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Main Forums => Pre-HAART Long-Term Survivors => Topic started by: OzPaul on April 14, 2007, 08:06:16 pm

Title: Introduce yourself
Post by: OzPaul on April 14, 2007, 08:06:16 pm
Hi Everyone

It's really good to have this forum for those of us who have been been positive for many years, survivors all.

Even though many of us here know of each other and many are friends too, I thought it might be good as a means of introduction to share some basic information. There will be many folks reading this forum who would like to know about us long term positives/survivors. I'll kick it off.

I'm 48 years old. I tested positive in 1985 though likely became infected in 1981 while living in NYC. I am not on medications for HIV though I am for bi-polar disorder.

I am American, though I have been living in a small coastal town outside of Melbourne, Australia for 4 years. I have been a ballet dancer and chef and have written poetry and essays as well. I also create environmental found art. Last year I started a Farmers Market in our town. My partner (who is negative) and I have been together for 5 years.

in Peace and Love
Paul
Title: Re: Introduce yourself
Post by: RapidRod on April 14, 2007, 08:47:21 pm
Howdy all, My name is Rodney, I'm 51, was diagnosed with HIV in 1984, a long term non progress-er until 2005. Hospitalized with Disseminating Histoplasmosis. Started meds in April 2005. Still fighting Histo. I'm a retired firefighter/paramedic and truck driver.
Title: Re: Introduce yourself
Post by: J.R.E. on April 14, 2007, 09:04:01 pm
Hello All !,

My name is Ray. I am 55 years of age. Originally, I am from Western New York, just north of Buffalo. I now reside in west central Florida.

I moved to Florida in May of 1980. I met my current partner( Ed )in July of 1980.  In 1985 I was diagnosed HIV positive. Ed remains HIV negative.

I was also, a long term non-progressor. I began medication in October of 2003. I probably should have started medication around 2001. I remain employed at this point in my life, and hope to continue, with my employment for some time... But, it can be a struggle at times.



Ray
Title: Re: Introduce yourself
Post by: DanielMark on April 15, 2007, 04:54:33 am
I’m Daniel, and I live in the capital city of Canada - Ottawa.

I'm 47, and tested Poz in September of 1988. My doctor called me into his office and said: Well this isn't the kind of news I like to give anybody, but .... He then proceeded to tell me I was looking at a life expectancy of six months or so.

I had clues for a long time that I was likely infected, so although I was sort of prepared, it still shook me up. Especially that prognosis. This was of course still the 1980s.

I very stupidly declined protease inhibitors for years, until November of 2002 when I collapsed in line at a checkout of a grocery store. My viral load was more than 500,000 at that point, and HIV had hijacked me, as my doctor likes to put it.

I ended up spending two days in a hospital emergency department. I don’t remember the collapse or much about my hospital stay except that I woke up and saw this "thing" in my hand (IV) and promptly removed it. My ex Ken says I also went wandering outside one night, upsetting the nursing staff even more. I wonder where I was going? When they started talking about putting me in their psychiatric ward, Ken signed me out and took my home to the condo and stayed with me a week to make sure I got on my regime of meds properly. Afterwards, he also made me phone him every morning and evening to report I'd taken the pills.

I’ve been taking Kaletra (lopinavir and ritonavir) with Combivir since then.

I’ve been in love with a man for almost three years now - Jim - who is HIV negative. And prior to that was with Ken for ten years (also HIV negative.)

I took early retirement not long after my diagnosis and am busier now than when I worked I think. I am never ever bored. Life is too full for that.

Daniel
Title: Re: Introduce yourself
Post by: mark54 on April 15, 2007, 09:21:36 am
hello, my name is mark and i live in new hampshire.  diagnosed in '83 when i was 29.  being young and fairly intelligent i asked the doctor what he felt my prognosis was.  well, he blurted out 'you will become very ill and die within one year.'  so fast forward 24 years, i'm 53 and just had to renew my drivers license last week.  so with the balding and hair cuts too short to dye any longer i had to be honest and put my hair color as gray.  to think i could have died young and left a beautiful corpse.
Title: Re: Introduce yourself
Post by: dad1216 on April 15, 2007, 10:24:30 am
My name is Bob, and I live in rural Indiana.  I have lived in the same house for 15 years, just 3 houses away from my Mom. My Dad passed away in late 2005 from cancer.  I am the youngest of 3 boys, and I just turned 53. 

I worked most of my life as management in the service industry, but the last 10 years of my working life was in finance.  I am currently on disability from SS.   

I am the father of 2 boys, 20 & 22, who both live at home.  My closest friend and wife just recently moved in with us to be my caretaker. Add in 2 dogs and 1 queen of the house cat, and I have a great support system in place.

I tested positive in 1988, about a year and a half after my youngest was born.  My wife and I separated and the kids stayed with me, and have been with me since.  A costly, bitter, news making, welfare interfering, divorce and custody battle, for a gay man with HIV in a small town, was my introduction to this disease.  In late 89 a very educated judge granted me full custody.

In 1999 with an upgrade from positive I started treatment until 2006 when my other options needed to be weighed out.  This option ended up being nature taking its course.  I entered this phase last August.  It was the hardest soul searching, educated decision I every made in my life.  As each day passes, as the body and mind takes another hit, I still am confident in my position with this battle.  Even if my weapons have decreased, I still am fighting in my own special way.

So that is just a little about me. 

Bob
Title: Re: Introduce yourself
Post by: Miss Philicia on April 15, 2007, 11:40:05 am
Some great stories here.

My name is David.  I'm 42, was diagnosed in '93 at age 28 but that was the first time I ever took an HIV test and as I was below 200 cd4 I'd say I was infected around the years of '87-'89.  As such I barely had to time to catch my breath before going on HIV medication, and have been on handfuls of practically everything available since then.  My numbers are really good now, but the first 10 years they were not and consequently I have resistance to a great deal of meds. 

I lived for 15 years in NYC during all of this, and only recently moved to Philadelphia 2 years ago.  I'm pretty much eternally single and have dealt with all of this medical drama on my own (excepting a few years), though I'm now out with it all with my family and they're super great and supportive.

I'm a feisty fighter with HIV and I don't plan on giving up anytime soon.
Title: Re: Introduce yourself
Post by: Ody on April 15, 2007, 11:55:26 am
Hi my name is Odis but everyone calls me Ody. I was diagnosed  with HIV in March 1986, but was infected between Thankgiving 1985 and January 1986 at the age of 16, living a small farm town In SW. Michigan aka Michiana area. The youngest of 3 and only male. My status changed to AIDS in 1987. I am now 37.

My local family is somewhat supportive, I should say my mother, step father, and nephew. My father died in 1999 believing I was negative and the doctors where wrong cause everyone knows  Hiv/Aids kills you in 2 years. I converted my step father's  homophobia, Aids-phobia. My nephew begs me to keep living, he and his wife even let me name their first child. My non-local family are more supportive, with my 2 nieces are both involved with health care due to me, one didn't like the way I was treated by nurses in the hospital, is now a nurse working with HIV/AIDS patients, and her sister, not liking the way my blood was drawn in the hospital, became a phlebotomist.

I have a negative partner of  5 years, my ex who is now my care giver when I let him, and my 2 dogs living with me in my mobile home I have owned for 6 years.

I worked in a nursing home till a leak of information by a receptionist at the doctor's office made way back, I refused to release my medical records and was effectively fired. I landed a great deal and purchased a vintage diner that was sold by my family when I started having uncontrollable seizures and was released from medical care to 'go home and die in comfort'. When they stopped and I learned to read, write, walk, and talk again, I managed to do well in creative real estate investments. I am currently getting SSDI, working feverishly  recovering as much of 'me' as I can after my last life threatening illness in Augest 2005.

Now living over half my life with this virus I look back and say "It's been one hell of a journey but what a ride! Now, when and where is the next pot hole?" I enjoy doing what was said couldn't be done, living!

Hope I didn't repeat anything I have placed in other posts...

Peace health and love,
Ody

Title: Re: Introduce yourself
Post by: gemini20 on April 15, 2007, 02:31:17 pm
Hello again, I'm Emma, age 37 and have been diagnosed since 1991.

I was infected when I was 21 while in a relationship with a guy who knew he was positive but he chose not to tell me until a condom broke. Unfortunately for me that one occasion was enough to get infected. I stayed with him after my diagnosis but he later developed AIDS related dementia and had to move into a hospice until he died in May 1993.

I grew up mainly in rural England (Herefordshire) but moved to London to finish my degree and never left. I have lived in Chelsea for over 13 years and share my flat with my cat.

I have worked throughout my diagnosis - ten years in local government and since 2002 running my own consultancy business, mainly providing HIV education in schools.

I have only spent a total of 22 months out of the last 16 years on meds for HIV and am currently on another break of 18 months and counting.

I do not know what the future holds but I am thankful for every extra day of life I'm getting and try to make sure I enjoy it.

Emma



Title: Re: Introduce yourself
Post by: Christine on April 15, 2007, 03:51:43 pm
Hi, I'm Christine. I was diagnosed in '93, (I think) infected in late '91. I have been married for 13 years, he is negative. I have a pan resistant virus. Resistant to everything except Viread.  My tcells dropped below 200 almost right away, and have been there ever since. I have not had much success with the meds, but managed to do well until 2001.

I was standing in my kitchen on a Sunday afternoon, and felt funny...like all my energy was being pulled out of my feet. It was a very odd feeling. I remember being in the ER, and walking back to the room to be seen by the doctor, and then I don't remember anything for the next two weeks. I was in the ICU, liver almost shut down, on dialysis, life support, feeding tube. It was diagnosed as an unknown bacterial infection. Two more weeks in the hospital, and a week in rehab, I bounced back.

I did okay until this past year, when it has been one thing after another. With my last hospitalization, the ID doctor talked to me about my final wishes. She wanted to know what to do if I did not respond to treatment. Basically, the gist of the talk was that my  body is wearing down, and there will come a time when no amount of antibiotics, or other medications will work.

Physically, I am doing better, but mentally it has been very hard. Horrible anxiety, flashback like feelings of being in the hospital. I don't know why this time it has been so hard.

I have been in four trials- Crixivan, TMC-114, T-20, and presently GS-9137.

I used to work in the hotel industry, graduated from Penn State with a degree in Sociology.  Have four dogs, and want another one- Great Dane. Most of my family knows, and is supportive. Have a fantastic doctor and nurse coordinator.

Like to read, but have partial blindness in my right eye due to CMV, and it is hard sometimes. Like to cook, do paper crafts, rubber stamping. Do obedience with the dogs. That's all I can think of for now. Thanks for listening.

Christine

edited for typo
Title: Re: Introduce yourself
Post by: mark54 on April 15, 2007, 04:36:58 pm
so christine, who's winniing at obedience, you or the dogs?
Title: Re: Introduce yourself
Post by: dgr20002 on April 15, 2007, 05:14:17 pm
Hi,

I live in Washington, DC. Was diagnosed in September of 1987 and became infected I believe sometime between November 1986 and then. Though looking back there was a guy in Germany in 1981 that could have done it but it seems I seroconverted in 1987 so I believe it was the summer of 1987.

When I found out my first t-cell count was just over 200 and no VL tests were being done then. I did absolutely nothing until 1988 when a doctor recommended a study at NIH  for a new drug DDI. I was one of the very first to take the 250mg dose three times a day through an IV. That was for three weeks and I was released on Thanksgiving Day 1988.  The meds were difficult to take then. Measuring saline in a syringe and adding it to a small bottle of powder, shaking that up and then extracting it with the syringe and mixing it with apple juice. Some years later they had a sachet which was just the powder that you could mix with water then later still a huge horse pill you had to chew. I was on this study about 10 years and through that time, well the last 5 years or so mainly i barely took the drug as it made me sick but I didn't miss any appointments. They had to have known based on blood work that I was not taking the meds.

Study ends in 1995 and then I have to start using my insurance and paying for drugs and DR visit co pays and such and so I have been pretty compliant with meds most of that time. I have been on a lot of different things and a lot I just couldn't take the side effects. Today I just take 3 pills once a day and have a VL <50 and T-cells just over 400. I work full time and really the only issues I have are fatigue. I can sleep 8 hours, get up walk the dog and have coffee and then about 2 hours later am ready for a nap. Maybe that isn't really an issue, but when I am at work and fall asleep at my desk it is since I really could be fired if the wrong person were to see that.

Otherwise I have no complaints. Thanks for the forum and thanks for reading.

David
Washington, DC[/size][/size][/size][/size]
Title: Re: Introduce yourself
Post by: Miss Philicia on April 15, 2007, 05:22:53 pm
And we welcome you to Aidsmeds with your first post, David.
Title: Re: Introduce yourself
Post by: Rich_Leeds on April 15, 2007, 05:42:03 pm
Hello, I'm Richard, 42 years old and I live in Leeds, UK.  I was diagnosed in February 1993 at the age of 27 following a routine test. I don't know who I contracted if off, neither can I remember ever putting myself at risk, but obviously somewhere down the line I must have done.  I didn't start taking medication until 18 months ago, when I started taking Kaletra and Combivir after my CD4 dropped to 57 and my viral load was up at 650,000.  I've never had an HIV-related illness, and keep myself fit and healthy by playing tennis.  I play in a tennis league representing my tennis club.  I'm open to my family about my status and get great understanding and support from all family members.  I discovered this site a few weeks ago after a friend recommended it to me, and I find it very helpful and useful.  I enjoy reading posts on here, and whenever I can, I do intend to contribute.

Thanks for reading!

Richard
Title: Re: Introduce yourself
Post by: OzPaul on April 15, 2007, 06:19:24 pm
Good morning from Australia everyone.

Thanks to us 'survivors' who are sharing their stories. We have been through a lot, individually and collectively. We have some new voices here so welcome to you ! It's also good to read the stories of some folks who have been around here for a while.

I want to thank those who have brought us this forum, Joe, Ann, Tim  and the moderators. As long term survivors, it is indeed becoming a place we can come and share our stories and perspectives.

I feel connected to you all and look forward to reading more stories, both triumphs and hardships as the months and years unfold.

Big Aussie Hugs
Paul
Title: Re: Introduce yourself
Post by: Christine on April 15, 2007, 06:56:27 pm
so christine, who's winniing at obedience, you or the dogs?

The dogs of course!

Christine
Title: Re: Introduce yourself
Post by: aztecan on April 16, 2007, 12:51:45 am
Hey all,

It is great to read about all of you. 

I am 49 years old, until July. I was born in Albuquerque, New Mexico, USA. In my very early 20s, I moved to Los Angeles, where I lived a rather randy existence (I had memberships to every bathhouse in L.A.)

I first tested positive in 1985. I moved back to New Mexico and went into a rather severe state of denial, aided by copious amounts of mind-altering substances. In 1992, a good friend talked me into seeing a doctor about my HIV after I blurted my status out during a particularly drunken evening at my local water hole.

I started meds in 1996, when my CD4s dipped to 440 something and my viral load jumped to 40,000. (Today, they wouldn't even talk meds at that level, but that was then.)

I started with Saquinavir, Epivir and AZT, but suffered rather severe side effects from the Saquinavir (Invirase). I tried to stick it out, but after two months, switched to Crixivan, which was very much easier to take.

As probably most of you know, I have been on the same regimen now for a few weeks shy of 11 years. Also, as most of you probably know, I am seriously considering switching to something else because of lipodystrophy issues.

I really haven't had many of the problems others have had. I've had a run-ins with kidney stones, lipoatrophy, anemia and a few other minor things, but nothing major like many others have.

All I can say is you are all an inspiration to me.

HUGS,

Mark

Title: Re: Introduce yourself
Post by: brooklynpoz on April 16, 2007, 07:36:04 am
Hello Everyone ,

I just want to thank each and everyone for your inspiring post. I am kinda a newbie. And the comfort I feel from long term survivors  is a blessing.

I was with a guy for several years , he worked 7am to 4 pm , I worked  2pm to 10pm. We both got tested in the begining of our relationship , and we were negative. I was young and dumb , and running our relationship as if I were in the BRADY BUNCH, he was out sleeping with men and women.   :'( When I found out, I left, got tested and was diagnosed postive in 2004 at the age of 34.

I am taking Kaletra and Truvada , undectectable, 286tcells, 20%.

Reading your post , inspire me, educate me, give me guidance, and give me hope. and I am most grateful for you all.  :)
 
GOD BLESS
Title: Re: Introduce yourself
Post by: J.R.E. on April 16, 2007, 08:04:40 am
In 1992, a good friend talked me into seeing a doctor about my HIV after I blurted my status out during a particularly drunken evening at my local water hole.




Allmost a similar situation here. I had confided in a friend, around January of 1986. We were sitting in the bar, i was pretty well plastered , and I had told , how I had tested positive a few months earlier.

Nothing is sacred.... It wasn't long before the entire bar knew, and thus that brought me out completely as far as my HIV status went. It was a difficult period of time. I trusted this guy to keep it to himself. But all the years later, and when I look back at it, I am not pissed. I ,( we)still see this guy from time to time) I am actually glad it went this way, of course looking back at it all those years ago, was a different story.

Unfortunately, and sadly, most of those that knew my status have themselves passed on...


Ray

Title: Re: Introduce yourself
Post by: dixieman on April 16, 2007, 03:04:21 pm
Afternoon,

I became infected with hiv in 1990 just before my 30th birthday while enjoying my 5th year of a so called monogamous relationship... I was tested for every std... in jan 1991... gonnoreah was presented to me from my testing...  gave my soon tobe ex  the boot... he moved to NYC and I met the most wonderful man but, broke up with him when I tested poz for hiv... my Dad, mom, sisters and two friends all were accepting to the news... my Dad said never give up... he's now deceased as well as my mom... so I presently live with my dog and will retire from my place of employment in a few more years... I never thought I would live this long.... cd4 1509... non-detectable viral load... herbalist.. exercise... eat healthy... 420 friendly... just wondering what I'm going to do on my next carreer...  lol
Title: Re: Introduce yourself
Post by: Force1 on April 16, 2007, 03:37:35 pm
I first tested + in 85.

I finished a long career at very tough jobs in 96 when I started the cocktail of drugs.

The first was norvir, that stuff will make anyone crazy. I have been on epivir,zerit and sustiva ever since.

In 96 I had about 20 t-cells just last months blood work was 613 t-cells and undetectable.

Title: Re: Introduce yourself
Post by: pozniceguy on April 16, 2007, 07:22:43 pm
Hi to all, especially the new comers... great site..super people with good information/advice.   My name is Nick...I was diagnosed in Jan 1994  when I got sick and went to the Hospital and found out I had PCP...tested HIV+  cd=2  vl > 1 million( they don't actually count over 500K )   probably infected in early eighties .. started HAART immediately..been on Crixivan and a few other things since then.. Had a number of  complications...MAC...infected disc in Back...severe Lipo ( very skinny) ..major anemia ( required transfusions for a few months) ..neuropathy.. and a nagging case of chest cough at the slightest exposure to almost any "germ"

I retired from the Military and worked for 15 years at a Major defense contractor...then got sick..haven't "worked " since.....stay very busy ..reasonably healthy...don't plan on dying anytime soon... I live a  very nice place just outside of Dallas..on Lake Ray Hubbard..probably one of the "oldest" ( in yrs) guys on the site..68 in June...
Title: Re: Introduce yourself
Post by: Buckmark on April 17, 2007, 10:36:50 am
Hi everyone,

Thought I would jump in the "LTS" pool here.  I think I qualify.  I first tested positive
in 1990 when I was 26 -- and almost certainly seroconverted in 1989 when I was 25.
I'm on the verge of 43 now, so I've been poz for most of my adult life, like many of
you here.

I went to my doctor and got tested because a man I was dating "convinced" me to
engage in unprotected sex, and I foolishly allowed it.  After a few months, I somehow
just knew that I had been infected.  I was right, even before I had the test. 

Here's an interesting story of how I found out my results.  My doctor never called,
so of course I knew that couldn't be good.  After 4 weeks, I finally stopped
went to my doctor to ask for the results.  When he pulled me into his office (not
an exam room), I knew what the results were.  Before he could say anything, I cut
him off and just said "the results were positive, right?".  That was a long time ago,
and even though I haven't seem that doctor in years, he really was one of the
kindest, most compassionate doctors I've ever had.  I can't fault him for not knowing
how to deal with a situation he had never faced before.

I've been very lucky, healthwise, in that I did not need to start meds until 2004.
Fortunately, I've had a very good response.  The "only" health problems I've had
are fatigue, some issues with mental health / depression, and a few cases of shingles.

I live in Liberty Hill, Texas, which is near Austin, with my 2 dogs.  I'm single -- have
been for nearly 5 years.  I live out in the country, and that's exactly the way I like
it.  I work in the software development industry, which demands
more time than I prefer to devote to it.  However, keeping my health insurance
benfefits is very important, obviously.

Anyways, I appreciate everyone's willingness to share their experiences and
information here, even if it sometimes lead to conflict or disagreement.  Truthfully,
I'd be worred if everyone always had the same outlook.

Cheers,

Henry


Title: Re: Introduce yourself
Post by: 30Years on April 18, 2007, 02:15:07 pm
Hey all...I'm "30Years."  I have been positive for at least 90% of my life being infected at 7 years of age.  I have no problems and I am 33.  I find it hard to fit in because I didn't get this disease by any type of behavior...but a blood transfusion.
Title: Re: Introduce yourself
Post by: RapidRod on April 18, 2007, 02:41:12 pm
Hey all...I'm "30Years."  I have been positive for at least 90% of my life being infected at 7 years of age.  I have no problems and I am 33.  I find it hard to fit in because I didn't get this disease by any type of behavior...but a blood transfusion.

You fit in. All you need, is to be infected and you are. Welcome to the forum.
Title: Re: Introduce yourself
Post by: sierrarancher on April 18, 2007, 03:27:41 pm
Hi,

My name is Karim, born in 1959. 

Diagnosed in 1986.  Probably infected by 1981, when I was hospitalized for a week with 'mono-like' symptoms.  The doctors finally diagnosed me as having CMV, a very-strange diagnosis for a person my age--at that time.

I started a blog a few weeks ago:  Broken link removed by admin where I discuss and reflect on  life experiences with HIV and cancer.

I had lymphoma in 1998 and two cases of anal cancer since 2001.  Quickie advice, if you haven't been tested for HPV, do so, as it can get nasty.  Finding a doctor who is not 'butt-phobic' can be hard, but it is so important to have the test done.  The equipment used is the same they use to test women for cervical cancer.  This equipment is not widely available and is also not in the comfort zone for some practitioners.   However, the test can literally save your ass (and your life).

I am glad to see this forum for LTS.  I sometimes feel like I'm in uncharted territory with HIV, so its very comforting to know I'm not alone. 

I have been on disability since 2001, after having had lymphoma and anal cancer.  I had a very stressful job, was trying way to hard to climb a corporate ladder, which I have since discovered led nowhere.  So, I've been resting, focusing on my health and enjoying life since going on disability.  I am hoping to get more in touch with my creative side.

I very much enjoy Second Life, www.secondlife.com (http://www.secondlife.com).  It's a virtual world and very entertaining.  Since I live in the country, it is a great way to connect with people.  If you have already joined, give me a buzz there, my avatar's name is Karim Marquette.  I have a boyfriend in Second Life, who is ultra cool.  No real life boyfriend, but I'm working on it.

 
Title: Re: Introduce yourself
Post by: leatherman on April 18, 2007, 03:47:09 pm
I'd like to throw my name in the pot along with the rest of you.  ;D

It was Sept of 92 when my partner, of 7 yrs., had a month of being "sorta sick". Having already had a surgery for Chron's disease, he went to several docs, looking to see if that was the problem once again. I fell prey to the AIDS PSAs on TV at that time and went to the city health dpt. for an HIV test that December. As many of you can probably relate, I remember exactly the details of that day when the diagnosis came back. At 1:20 pm on Dec 26th, 1992, the nicest 50-ish nurse seemed quite taken aback by how easily I accepted the news that I was HIV+. Heck, I was a gay guy, it was right after the end of the 80's, of course I was positive.

Things went down from there. For the next two years, I watched as my partner got sicker and sicker. We both went on meds and Randy was in several trials. (Oh how I remember bundling Randy up and loading him into the car for our 50 mile trips to get to the Cleveland Clinic, hoping for some good news for a change.) Randy's illness aggressively progressed, while my biggest problem was that the AZT was killing me. Eventually, I had to quit it. One of us had to stay alive long enough to care for and bury the other one, and that chore fell to me.

I'll just skip all the details of those years except to say how horrible it was watching Randy suffering and, slowly but surely, wasting away. I should mention the callowness of our doctor though. At Randy's final trip to the hospital for IV meds, the doctor spoke with me on the phone. Abruptly he told me that they wasn't anything else that could be done, did I want to admit him to the hospital or take him home to die? Yikes! I have had to make that decision about my pets before; but at only 30 yrs. ago I couldn't believe that I was having to decide how best to let my partner pass away.

Hospice care hardly had time to even evaluate our situation, when 9 days later on May 25, 1994 at 5:55am, Randy passed away on a hospital bed set up in our living room, surrounded by our cocker spaniels, friends, and family. His mom, an LPN, pronounced him dead after he uttered his last words to me, "Love you".

I didn't mean to write quite so much about Randy, since this is a forum of Long Term Survivors; but I needed to get that out. Not only to keep Randy's memory alive; but to explain what a "survivor" lives with. Living with this illness hasn't been as hard on me as losing Randy, just shy of our 10th anniversary and his 30th birthday.

Within two years, I was hospitalized with PCP pneumonia after which I got the official AIDS diagnosis. Afterwards I ened up on disability to help cover the medical costs along with the meds. Dealing with multiple meds (at one time I was taking 32 pills a day), depression, and a ton of side effects, it wasn't long until I quit the meds. For a while I felt quite good, even though I was on a slide back down to another hospital stay with pneumonia. Then it was back onto new meds until I couldn't stand those side effects either. This up and down trend continued for nearly a decade. Every visit to the doctor, I was told how ill I was and that I probably wouldn't last another 3 months. More than once, I nearly threw in the towel. It was becoming a quality of life issue for me. Did I really want to continue living if it meant puking EVERY day, hives and rashes, walking into the walks like a drunk man (that was the Sustiva), and unable to have a life outside of my home? My family and friends all tried to help; but what could they do solve my biggest problem? No one could bring Randy back to me.

Luckily, a rare visit to a local agency actually started what I can look back at now and call a turn-around. This social worker explained that there were other doctors in my area now. No one (patients, social workers, or the hospitals) cared much for the doctor I was seeing. Although I wasn't actually one of her "cases", this worker got me set up with another doctor. What a blessing he was! Even though I got tried of all the blood work, he monitored me closely as we went through the meds trying to find the right combination that would work on the HIV and keep the side effects down to a minimum.

Being able to handle the meds made a great improvement in not only my physical health, but also my emotional health. I finally gave up my role as "widower", and took my best friend of nearly 18 yrs as my partner. Jim had wanted this much sooner; but I was too busy being depressed, sick and dying to want to bring into his life the grief that I had suffered.

Ah, and love really can work wonders. When I look at a chart of my Tcells vs. viral load over the last 15 years, it's staggering. Most of the graph is filled with spikes as I went on meds for a while and then back off making my vial load jump. Until Dec 2005, that's when, on a trip to see my family, I finally committed to a relationship with Jim. Since that point the graph has taken a dramatic change. My viral load has stayed nearly undetectable and just last month my Tcells went over 300 for the first time in a decade. And I'm only barfing a couple of times a month now! WooHoo!

Sorry for such a long post, but I'm glad to still be here and to be able to even post. If you really want all the details, I've been keeping my own blog site since 1999 at http://reigningpages.com/leatherman (http://reigningpages.com/leatherman). Now I've got to get back to my latest project - http://reigningpages.com/pooltag (http://reigningpages.com/pooltag) (check out the pix from 2006). This Summer for a second time, Jim and I will be hosting "Pooltag" which is not only Jim's birthday party; but a contest amongst our friends where we build floats, using pop bottles, and try to make it across the pool. Laughter and love are the best medicines!

Best wishes to you all and keep up the fight!
Michael
http://reigningpages.com/leatherman (http://reigningpages.com/leatherman)
Title: Re: Introduce yourself
Post by: mudman8 on April 18, 2007, 05:54:23 pm
Hi all, I just signed in tho I'd been getting the emails about meds for 6 months. I like this forum, I've outed myself on other men's forums as I want everyone to know what they're up against, I don't want any nervous ninnies getting upset with "The Discussion" afterwards in post coital bliss.

I had to be infected back in 81 or so when my lover at teh time went to NY and came home and a month later was sick, undisclosed infection.  2 months later I was the same way, coulsn't get off teh couch tho we'd read about the gay cancer we just hoped not. I left him in 83, the asshole was doing coke at home while self emplyed and became a paranoid jerk. Woof just had to get that off my chest.

 I had been a landscaper that maintined beautiful yards in Laguna Bch but now it became meanial maintenance jobs once I moved to San diego away from my partner who didn't understand why I didn't want to be friends with him. Think outdoor janitor with a nasty supervisor around ever corner. I moved up to Santa Barbara to live with friends that had a maids room in a old house they'd just bought. I found the best friends I've ever had. I flourished, took drafting and art classes and decided to go to grad school for Landscape Architecture. got all A's in 3 years.  Tho I had a wild fling with a bi man in grad school in 90 I always wanted to use condoms he didn't.   I tested positive in 91 finally facing the fact my ex and best friend had died. I had to tell the bi guy and he tested poz too. Told his wife it was from needle sharing, thankfully she was negative. I had to move for a new job back to Santa Barbara.

2 years later the job was over and my health became bad and I'd been taking AZT. I had Pneumocystus and KS. Dr at Kaiser got me on the new cocktail in 95. I moved to LA because SB was too expensive and a dead end for single poz man. Best decision ever.  I love living in LA, lots more men to date.  I regained my strength went back to school, became more of an artist, tried a few jobs but they didn't work out. I just had bad karma in jobs and stress. Love school tho. My parents think I'm just fine and should get a job. I say that with the stress in last 2 jobs reduced my Tcells by half and i lost weight running around frantic on the nursery job. If I go back to a stressful situation I'm going to die faster, do they want that?  Thankfully I have a stock portfolio with some money my dad gave us kids and am now trying to shift it all to high dividend stocks for added income.  Iv'e found no jobs that provide insurance and I don't want to give up my medicare, it keeps me with Drs I like.

Lately I've come down with Carcinomas on my scalp, they have to take these cancerous bumps off and sew me up, and a month or two of healing. It's a freaky thing doing it with local aenesthics, the first time was a night mare come true. Now I have even more, about 6, and Kaiser is so slow to remove them, I think of them as alien spawn. They don't know if it's my years in the sun or part my low immune system. Or both.
 
But now back at school taking art history and printamking, my etchings are of orchids and some figures and some abstract.  I'm resigned to being a poor artist, but I have  a fab apartment in a nice area, friends  I get to go do things with  who are poz also and the added bonus is last summer I met a guy online  and we've become an item. I only get to see him every other weekend, sometimes more often, and magic happens when he walks in the door. He's poz too. I can't believe at 52 I fucking fell in love full on heart palpitations, pit inthe stomach can't think of anything else LOVE. And he knows that now, I tell him every chance I get. I even cry at old movies when two finally get to really kiss and it's teh real thing. I''m such a woose.

well thanks for the opportunity to vent and cheer. ;D
Title: Re: Introduce yourself
Post by: Moffie65 on April 18, 2007, 06:24:38 pm
First off, welcome to all you guys and gals who have entered the forums through this thread.

Since I am one of the Bloggers of this site, my life story starts in August of 2005 in the Blogs.  If you want to see a life of excitement and wonder, please have a look see.  The link is at the bottom of this post.

I was born in 1947 in Lynwood California, to a minister, and his incredibly beautiful wife.  Life started quick and that is covered in the Blog.

I was infected in September of 1983, and worked for Eastman Kodak for another five years, when I left and purchased a Kenworth and hit the road to live out a long time dream.  I stayed asymptomatic until 1994.

In January 1988, I met the man of my dreams, and started the relationship I am still in today.  We live in Southeast Arizona, where I am very busy as the resident activist, and write a monthly column called "Living with HIV/AIDS" in a Mormon owned paper.  The owners felt it was very important to let the people in their circulation to know about HIV so I was invited to do so in January of last year.

I have started and closed two AIDS Service Organizations, and am a member of the Arizona State Advisory Council and the ADAP Formulary Committee.  ( I have a difficult time with the funding side and never found someone to do that for free )

I have really struggled with HIV, and suffer a load of pain, but my Sweetie keeps me grounded and going forward, which is all anyone could ask of a partner.

Most of my life was in California, New Mexico and Arizona, but the formulative years were in East Africa.

Once again, welcome to all you new guys, and I trust you will find this site informative and entertaining.  I have been on board here for about three years.

Love,
Title: Re: Introduce yourself
Post by: BT65 on April 18, 2007, 10:39:00 pm
I live in a small town in Indiana and have been HIV+ since 1988.  I'm in recovery, but I didn't get the virus from the needle.  I was infected by my first husband, who died when I was in treatment in 1989.  I almost died a couple times, back in the day when they were megadosing people with AZT.  There are so many more medications out there now.  I'm finishing a BS in psychology and I hope to be an addictions counselor.  Wow, this wouldn't have been possible 10 years ago.  Glad for the new medications!  I just wish they had a good support group for people with HIV here.  It gets rather lonely!
Title: Re: Introduce yourself
Post by: yorfutrxhsbnd on April 19, 2007, 05:15:46 am
 Hello, my name is William.  I’m 47 and 355 days old and I've been positive nearly 13 years.  I was infected in the usual way, sort of.  There is a reason they call it "safer” as opposed to "safe" sex as I'm living proof that although the risk may be small, you can still get infected when safer guidelines are being followed.

While my viral load is currently undetectable and my T-Cells have remained stable, I have had some complications.  The meds and the virus have given me gifts that keep on giving:  neuropathy, diabetes, heart failure, GI problems, memory problems, depression, and, worst of all, FATIGUE.  There are probably more complications, but as indicated, my memory aint so hot these days.  I've been on disability and have no perception of the time that has elapsed in the last ten years as most of it has been slept away.

I'm always amazed when people say things like "being positive improved the quality of my life.”  They should count their blessings because they are very fortunate.  While their positive attitude certainly helped shape the quality of their lives, it is by no means a guarantee, as I used to have a positive attitude too (even after all my complications).  I don’t remember exactly when that attitude left on its one-way excursion to destination unknown.  That destination must be pretty nice and I wish I had gone as well, but my disability insurance is just low enough so that I have now run through my entire life savings.  If you are going to be sick, I strongly recommend being in a relationship, if only for the financial benefits.

Maybe it's the city I live in, but I have a pretty low opinion of most of humanity.  While I cling to the notion that there is some goodness in the world, I've seen and been affected by, some of the most horrible human beings imaginable.  Doctors who should not be practicing medicine, people who out of jealousy have sabotaged potential relationships, and friends who weren’t really friends when I needed them.  Wait!  I cannot forget the people at my health insurance company who in their endless denial of claims, continually make my life miserable.  There would be a special place in hell for them except I don’t believe in such things.

Now that I’ve written this post, I understand why I haven’t before.  To anyone that may have read this, I apologize.  This is really a downer.



Title: Re: Introduce yourself
Post by: Dachshund on April 19, 2007, 07:37:48 am
We understand completely.
Title: Re: Introduce yourself
Post by: Joe K on April 19, 2007, 09:05:43 pm
My name is Joe, I am 52 and I was infected in March of 1985.  I have lost more friends than I will ever remember and that loss is what fuels my passion for advocacy and is one of the reasons that I joined these forums in 2002.  Long story short: I have been in clinical trials and test drove some of the early drugs and just for the record, there is no viler tasting substance known to man than the liquid version of Norvir.  I have taken 16 of the current anti-HIV meds with my most intense regime in oddly enough 1996, which required me to take 96 pills per day.

Being much too stubborn to die, I have survived about 14 hospitalizations, had PCP six times and just about every OI in the book.  Still, I came from my low in 96 (4 CD4s, viral load off the charts and 9%), and today, while taking only Truvada and Viramune (3 pills) I have 746 CD4s, I am undetectable with a 28%.  Through my 23 years of living with HIV, I have learned that you cannot take anything for granted and I am grateful for each and every day and some days are certainly better than others.

I was born in Toronto, orphaned at 4 and adopted from a group home by my wonderful parents, who took me home to grow up in Detroit, Michigan.  Being a "recovering Catholic", I suppose you could label me confused, in the early years, as I had a 9-year marriage that produced my wonderful 22 year-old daughter, Kate, and I did not really come out, as being gay, until my late 20’s.  It can be so sad when your fear of abandonment causes you to do things that go against your grain.  I made some terrible choices, hurt some very good people, but I had nobody to show me the way.

My first relationship was with a negative man, who refused to coddle me and forced me to stand on my own in dealing with my infection.  My declining health and his increasing fears of HIV infection forced us apart after four years.  It would take a couple of more years, with my second “partner”, until I determined that he was a drunk, drug-addled sociopath.  One restraining order, three months in jail and the threat of six years in jail, sent him packing back to Michigan, after we moved to Fort Lauderdale in 1999.  Fate must have taken pity on me, when I found my husband, Stephen in 2000.  We have been together for eight years and I now know that the key to any relationship is in understanding what you will not tolerate and all the rest is negotiable.  Relationships are not competitions and the sooner you accept that, the sooner you can attain contentment.

I have been an AIDS poster boy from day one.  Newspapers, radio and television were a very hostile environment in the late 80s for poz people.  I have held AIDS vigils for decades, run two AIDS Service Organizations and have spent countless hours, trying to educate the masses about the reality of HIV.  Sadly, little has changed and even though we are 25 years into this hell, we still have people dying from lack of care, because their lives just are not worth enough, at least in the eyes of the US Government.  HIV services have been flat funded for six years and that lack of funding HAS DIRECTLY KILLED DOZENS of members from our community.  As you can see I remain as angry today about insufficient HIV services, as I was in 85 and it is the memory of all those, who we have lost, that will forever fuel my passion.

I share my hopes, dreams and horrors to help others realize that you can and will adjust to HIV, but you must be an active participant.  I believe you are ultimately responsible for your health, but you can never have too much support.  I welcome you all to this forum and I hope you will enjoy this special forum, because the amount of knowledge, compassion and hope, contained in these very special people, is what support is all about.

I hope you find these forums to be as inspiring as I have and I welcome all of you to our AIDSmeds family.
Title: Re: Introduce yourself
Post by: OzPaul on April 19, 2007, 10:35:50 pm
Thanks everybody for your introductions. It's good to see some new names and faces among the old members of these forums.

I find the stories here to be quite remarkable as we have come so far in spite of having been diagnosed as being HIV positive, many for 20 years or more. We are a  remarkably strong  group of people here and I tip my hat to each and everyone of you.

Thank you to Joe for coming forward with the idea for this forum. Thank you to Peter as well.  It is already a place where we older and long term survivors can come and share of our stories, fears, joys and concerns.

Cheers
Paul
Title: Re: Introduce yourself
Post by: AlanBama on April 20, 2007, 10:29:57 am
I'm Alan, 50 years old, diagnosed HIV+ in 1987, "full blown AIDS" (that's what it was called then) in 1991.

I'm a true Lazarus Syndrome Long-Term Survivor.   Unlike Lazarus, who came to from the sleep of death in perfect condition, I had some major health issues when the protease drugs came along and somewhat began to restore my immune system:  Addison's disease, DVT and blood clots, and most significantly a heart damaged by bacterial endocarditis.

Those early years of AZT monotherapy, setting the alarm on the pill box, fighting to keep from throwing up at work....all that seems like a bad dream to me now.   I have not been hospitalized since 1999 (crypto) and my virus is undetectable and T-cells in the 400-500 range.

I originally came to AIDSmeds seeking to connect with other LTS, so this new forum is like an answer to prayer for me.   I never take anything or anybody for granted anymore, and I try to enjoy every day that I'm given.   I have a wonderful partner, family, friends and co-workers who are very supportive to me.

I still harbor a lot of anger and resentment about everything AIDS has stolen from me, and it's a constant struggle to keep that in check.   I try to channel it in positive ways, but am not always successful.

Going to Montreal last summer for AMG was a dream come-true for me, and if anyone had told me in 1996 that "ten years from now, you will travel to Canada and walk around and have a wonderful vacation" I would never have believed it.   I consider myself and my life a miracle, and it overwhelms me at times.   The only way I know to cope with this is through gratitude.   At the end of every day, I say "thank you".

With love and appreciation to all my fellow LTS,
Alan
Title: Re: Introduce yourself
Post by: keithhouston on April 20, 2007, 05:00:00 pm
 :) Hi All!  I am a long term survivor.  I was tested serio-positive in 1988, almost 20 years of my 54 years.  I live in Houston, Texas.  My viral load has been up and down.  Recently I tested 50,000 viral load.  I was put on the study drug TMC 125 and Prezista.  I went to 1,000 viral load in a very short time. I hope to stay on this and make it work.

Keith
Title: Re: Introduce yourself
Post by: allanq on April 20, 2007, 11:03:04 pm
My name is Allan. I'm originally from Brooklyn, NY, but I've lived in the Bay Area for the past 29 years. I was part of the big gay migration to San Francisco in the 1970's.

I was diagnosed HIV+ in 1988, but I"m pretty sure that I acquired this virus in June 1985. I've taken most of the drugs that are currently available and developed extensive drug resistance over the years. I'm still dealing with the effects of neuropathy, which was likely caused by being on d4T for two years in the early 90s. I've had Sculptra and PMMA treatments to help correct facial wasting. (I'm very happy with the results.) My current regimen consists of Sustiva, Prezista/Norvir, and the new Merck entry inhibitor. The combo seems to be working.

I went on disability the day after my 47th birthday in 1995. (I thought I'd make you work to calculate my age.)

I live alone in a small house in Oakland, CA, which is my sanctuary. Sometimes my sanctuary shakes in rather menacing ways, since I am just a mile or so away from the Hayward earthquake fault. I have some very dear friends, but I spend a good deal of time alone, including a few hours a day at the computer reading online news (especially the NY Times), researching HIV-related issues, and visiting these forums.

I'm looking forward to meeting other forum members this September at the AMG in San Francisco.
Title: Re: Introduce yourself
Post by: Grendel on April 21, 2007, 06:20:14 pm
Wow, some really emotionally intense stories in this thread. But inspiring. My own story is not nearly so uplifting, though. Almost boring, really.  :-[

I'm 44 and was diagnosed in 1996 so I've lived with HIV for 11 years now. I don't know when I was infected for sure, but it had to be before 1994 since that is when I met my significant other. We've been together for almost 13 years now and he's HIV negative.

I found out my status in 1996 when I drove myself to the ER because I couldn't breathe anymore and had had a low grade fever for, oh, about a month or so. Turns out I had severe bilateral PCP pneumonia. I was almost on death's door. My CD4 count was 46. I was EXTREMELY lucky in that I had just signed up for the company insurance plan about 2 months before this.  ;D

The doctor that I had in the hospital was an a**h*** though. He delivered the positive HIV test result by telling me that I had AIDS and "I really hope you like your current job because you're stuck with it for the insurance for the rest of your life" and out the door he goes.

Luckily, one of the partners in his practice with more experience (and some actual human compassion) took me on and started me on the HIV meds. I don't even remember what my first combo was, but it worked for about two years and then the virus started to break through. At that time, he referred me to a specialist here in Charlotte that I've been with ever since. He's an awesome doc and I've been very lucky. I've had my share of side effects including kidney stones, stratospheric cholesterol, wild hallucinatory dreams, etc. but nothing so drastic that I couldn't get through it.  After 11 years, and some diet changes and fiber supplements, and Tums, I'm even starting to get a handle on the reflux and the wild swings from constipation to fire-hydrant style diarrhea.

Basically, I take care of myself as best I can, eat right, exercise, blah blah blah. And make sure I enjoy myself as much as possible. But when I get down, I don't kick myself for being negative. I'll take a Saturday and lie around the house eating ice cream if that's what makes me feel better, haha.
Title: Re: Introduce yourself
Post by: tigger2376 on April 21, 2007, 07:28:31 pm
Its amazing to read other peoples stories, and get to know them better. I was infected 26/3/01...I can be that specific because i'm the original one f**k wonder. I was in a long term realationship and was unfaithful,once. it turns out the guy who I slept with knew he was positive. I'm STILL angry with him, but also have to take responsibility for not using a condom. I realise compared to some of you guys I'm a relative newcomer, and finding his site has been a lifeline, the unselfish help, humour,practical advice and kicks up the arse have kept me as sane as I'm ever going to be! i'm on meds now, since an OI last Sept, and its been hard...like a new diagnosis, but I'm getting there. As a white hetero female it still feels a little lonely, (but hey, if that means less infections, I'm happy that way), but I hope it doesn't matter what sex/age/colur I am, i'm just one of the 'family' i've adopted here, and I hope I've at least made people laugh.
I'm trying to get on with my life right now, looking into more education, maybe some part time work, so I'm not around as much, but I think of this place a lot, and a lot of this place
Jo
x
Title: Re: Introduce yourself
Post by: Nico on April 22, 2007, 09:05:35 pm
Hi, I am Roger -sounds like an AM meeting.

I was infected 12/16/89 by my partner/husband - when we finally tie it in Canada.  How am I certain of the date?  I had been celibate for twelve months  (and was negative) and after meeting the person I was meant to meet, I found out he had HIV.  The condom broke that night and for the first time in five years, I called in sick for five days after I got what I thought was the flu three weeks later.  The strange thing is, I was not mad or upset.  I knew this was where I was supposed to be. 

We moved to Atlanta and I finally got a test in 7/90.  It came back positive.  I did not cry or get pissed off.  It was what it was.  I guess, I knew I had more in my life than I could have hoped for.  I asked the "big guy" for three years with this man and I now have seventeen.  No, it has not been a fairy tail - no pun, but a good life.

My partner is still HIV+ and I have AIDS.  Ironic since he has been infected since 1988, but he is a type B person and I am type A.  Stress is a factor.  I did not start meds until late 2001/2002 after PCP, kidney failure, C-Diff and severe PN.  Why?  My former Dr. did not think I needed to.  Advice is listen to yourself.

Today some many years later, I have high T's, <50 VL, a good percent (42-47) and my biggest issue is the side effects from the AZT and Norvir.  Nothing like skinny arms and legs and planning your day around available restrooms that are clean.

Well that is my short version.  I am lucky and thankful to still be here with my partner.

Hugs,
Roger

Edit - typo and there may be others..
Title: Re: Introduce yourself
Post by: heartforyou on April 23, 2007, 11:31:14 am
Hi y'all,

My name is Herman. I am 51 , infected 1983 and diagnosed in July 1987. I live in Belgium.
I love long walks with my Jack Russell, Lola and am fond of oriental cuisine.
Care-taker is the word most suitable to describe me. And mister "smile" BUT....
One week ago I was in a dark place from which I thought I would never escape.
But, I also am a sufferer of the so called "Lazarus syndrome".

Anyway, I am glad I can introduce myself to those who don't know me.

As a flight attendant I was travelling extensively around the globe for 18 years. The US was my second home and of course I enjoyed the gay clubs in NYC and SFO. And the wild nightlife.
In 1983 I was in hospital with an inexplicable infection, sky high fevers for over a week.
It was my seroconversion.
The diagnose came in 1987. My GP called and said : Herman, you liver is ok, but you have that new disease, AIDS. (sic) 3 days and some panic later I decided my life was to go on and I continued flying until PCP brought me down in 1995. I had refused all medication until then, a decision that very well may have saved me.

I started on AZT and have since taken all possible combo's. Had multiple side-effects, wasting and PNP
The orange fluid Norvir was the nastiest and the Sustiva  the most devastating ( I had hallucinations and freaked out on it). I think it was the Norvir that caused a toxic hepatitis in 1996.
My lowest t count was 17 and my highest viral load : over 5.000.000 ( 5 million) copies per ml³.
Of course I lost my wings and also 150 colleagues to the plague.

I met a new love, Jean-Pierre, who promised me to take care of me when my time would come. He died soon after those words, from a heart-attack, at the age of 32 .
My new partner and I ( who were the first gay couple to get legally married in Belgium in June 2004) started a Wellness Center in 2000. I think I wanted to prove myself that having had AIDS would not stop me form being a businessman. My business was booming, until a burnout forced me out of work for 6 months, resulting in a painfully long sale and just narrowly escaping bankruptcy. I lost all my savings and I am in debt.
But my CD count is at 781 , VL < 50 since 1996, and I am now on a non PI regimen. This is the first one I have no side-effects from.

My husband fell in love with a new guy during my burnout, so I am physically getting divorced soon.
I have been to all the AM gatherings. Toronto, Nashville,Amsterdam and Montreal. I think I have met around 60 members, face to face. AND YOU ALL HAVE CHANGED MY LIFE.
I have fallen in love twice here.  I met the first guy in Toronto and Dan J and I started dating in Montreal in August 2006. Not an easy road to travel.

Just as Joe Killfoile, I suffer from a mental illness, called depression. My first one came at age 13, and I have had several ones since. It was just before being admitted in July 2005, that I found this Forum and 2 weeks later I was in Toronto, meeting all these wonderfull people. It changed my life.

I am currently recovering from my nastiest depression ever, due to a accumulation of causes.
And I need you all. Without this family I would long be dead. No doubt about it.

It is my dream to live in the US one day. But as long as the laws are still prohibiting me to enter legally, being HIV+, I will hopefully be able to keep visiting my close friends in the US and maybe the gathering in SFO.

We are all here, because we are fighters.  And let me say that I admire, get inspired, feel loved and love this family, more then anything in the world.

Herman
Title: Re: Introduce yourself
Post by: Pilot on April 25, 2007, 01:09:43 am
Hello,
New to the forums, but have been reading them for some time.  I live in Saint Louis, and unfortunately i am still single...but thats another story.....lol...I am a Scorpio...maybe thats the problem.....buts its like being uncut ..I wasn't given a choice in the matter......lol....I love people and have a generous heart or so I am told...hmmm maybe thats another reason I am still single.......anyway, just wanted to say hello to everyone and if I can be of help to anyone at anytime...let me know....I am educated, or at least my degree says I am and I am not exactly fugly in appearance...six foot...156 lbs...brown hair, hazel eyes...yes i wear glasses ..maybe another reason Im still single..lol.....

Pilot...remember...your not as dumb as they think they are smart........ :)
Title: Re: Introduce yourself
Post by: lilguru on April 25, 2007, 12:31:32 pm
Hi, everyone.  My name is John, I am now 51 years old.  I was tested positive in September 1986.  I was living in Houston, TX at the time.  AZT was just beginning to be prescribed, but my doctor at the time said "wait, something else better will come along."  I waited until 2001 to begin drug therapy.  At that time my t-cells were "3" and my viral load was 500,000.  Up until that time I had no major symptoms, some diarrhea, but it was manageable.  In June of 2001 I noticed spots on my legs which were diagnosed as KS.  I freaked out and started taking combivir and sustiva (which was quickly changed to viramune). 

It is so good to see so many survivors actively taking part in this forum.  The stories are amazing.  Even in L.A., it is easy to feel alone, so I know that many of you who live in small towns or in rural areas must experience the feeling of being the "only one" at times. 
Title: Re: Introduce yourself
Post by: jangels58 on April 27, 2007, 05:03:45 pm
 :-[  Hi  All,  after being alone with AIDS for so long, I forget what I use to do. I was infected July 1985,am a 49,heterosexual female,have 3 grown kids, going on 5 grand kids, I HAVE WANTED TO START AN ALL WOMENS LONG TERM SURVIVORS GROUP, BUT DIDN'T KNOW HOW.SS I USE CAPS SO I CAN SEE BETTER.
      ANYWAYS, ITS GOOD KNOWING I AM NOT ALONE, HOPE TO MEET FRIENDS. JUDY
I HAVE BEEN ON TELEVISION,AND HAVE SPOKE AT HIGH SCHOOLS,ETC. I JUST NOW AM TO TIRED TO DO ALL I WANT TO DO,,, ANYONE FEEL LIKE THAT? ALSO JUST GOT OUT OF HOSP LAST JAN 2007 FROM A 3 MONTH STAY.HAD ENCEPHALITIS. ANYONE EVER GET THAT? YUCK.   CYA SOON, JUDY
Title: Re: Introduce yourself
Post by: J.R.E. on April 27, 2007, 06:00:23 pm
:-[  Hi  All,  after being alone with AIDS for so long, I forget what I use to do. I was infected July 1985,am a 49,heterosexual female,have 3 grown kids, going on 5 grand kids, I HAVE WANTED TO START AN ALL WOMENS LONG TERM SURVIVORS GROUP, BUT DIDN'T KNOW HOW.SS I USE CAPS SO I CAN SEE BETTER.
      ANYWAYS, ITS GOOD KNOWING I AM NOT ALONE, HOPE TO MEET FRIENDS. JUDY
I HAVE BEEN ON TELEVISION,AND HAVE SPOKE AT HIGH SCHOOLS,ETC. I JUST NOW AM TO TIRED TO DO ALL I WANT TO DO,,, ANYONE FEEL LIKE THAT? ALSO JUST GOT OUT OF HOSP LAST JAN 2007 FROM A 3 MONTH STAY.HAD ENCEPHALITIS. ANYONE EVER GET THAT? YUCK.   CYA SOON, JUDY


Hello and welcome Judy,

Don't forget to check out the "positive women's forum" also :


http://forums.poz.com/index.php?board=19.0



Title: Re: Introduce yourself
Post by: wishihadacat on April 28, 2007, 09:22:30 am
Hi kids. I picked up The Gift in 1979 or 1980, which makes it almost 28 years  that I've had HIV, as well as Hep C. I was diagnosed at the NYC health dept on Ninth Avenue back in 1988 after I decided to get tested. As wth all of us, its been an interesting journey, to say the least, and I like to think that it has made me a more compassionate person over the years.

I'm still married to my still HIV- spouse of 20 years, but that is another story for another time. Suffice it to say it hasn't always been easy, but I am not complaining. I'm still astonishingly healthy and I've made a lot of friends, gay and straight, black and white, male and female, who are here with us. Like all of you, I've lost many friends over the years - some to HIV, some not.

I've only been posting here for a short while, but I've found it helpful, and its amazing how many terrific people there are here who are so supportive. It truly is a blessing.

Title: Re: Introduce yourself
Post by: Mirar on April 29, 2007, 02:16:46 pm
Hi my name is Bill I was diagnosed HIV+ in 1985 at age 23. Back then there was little anyone could do it was all so new. My partner finally got tested in 1986 in less than a year he died. We had just bought a house 6 months prior to him becoming ill and we ended up spending everything we had on his medications and huge medical bills. We tried to sell the house but the market was down and we owed more than the asking price so I made the decision to let the house go to pay for his medical expenses, money ran out very fast.

His death was a major turning point for me. I relocated to the desert to be with my current partner of 21 years he is still negative and he has been my rock. If it was not for his love, support, connections, getting me in to see the right doctors I know I would not be here today. I knew that if I were to have a small chance to live I would do everything my doctors told me to do; including setting an alarm clock to take pills around the clock. I feel very lucky to have stayed one step ahead of the game with medications and having very few problems. The 1980’s to me was an ugly time in my life it is something that I will never forget.

I am a certified pharmacy technician I recently had to leave my position at the hospital to be a caregiver to my partner.

Title: Re: Introduce yourself
Post by: aztecan on April 29, 2007, 03:05:13 pm
Hey BillyDick,

Welcome. Wow, I also tested positive in 1985 and I also live in the desert.

Hmmmm, could it be we have found a secret to living with the bug - desert living?  ;)

Glad you've joined us here.

HUGS,

Mark
Title: Re: Introduce yourself
Post by: redhotmuslbear on April 29, 2007, 05:27:58 pm
I hate that work and school have kept me from visiting these boards recently.

There are lots of things I want to be called or known for besides being a “long-term survivor” or a “long-term non-progressor” with HIV.  It’s part of who and what I am, but it only defines me in a very limited clinical manner and illustrates only one of many ways I have defied the odds in the Big Game of Life, generally with little to no action of my own or totally in spite of my willful neglect.  I am first and foremost a strangely fortunate pig-headed fool.  Then, the son and grandson of breast cancer survivors, the survivor myself of 20 neurosurgeries in for under 5 years (25 in 15 years), including a coma and six months re-gaining the use of my body for a spinal fluid shunt implanted when I was almost 15.  Then, the kid who went to college at 15 and barely got by between medical drama and sexual intrigue, only to wait til 41 to start grad school.

Accepting that I’ve been waging an internal war against HIV for nearly 25 years brings up a variety of choices and experiences that I’d rather forget, even if each one is part of the unique course that led to my peace in the present moment.  Being sexually active with chronological peers since I was 9 years old (1974) and with adults since I was 14 (1979), I may have been infected before or soon after my early brain surgeries, though the only illness resembling seroconversion syndrome which I ever experienced was in the fall of 1982, shortly after being treated for syphilis, through the spring of 1983.  Nasty night sweats and swollen lymph nodes all over my body, things I had heard of from friends who developed KS or PCP, but I kept my head down and hoped for the best.  By the time I graduated college in 1985 at 20, over fifty friends and dear ones had died of what had finally been labeled AIDS; and within two years that number was over 200.  The best didn’t mean losing my mentors and my friends prematurely, did it?  The shrink who handles my ADD meds shrieked last summer on our second meeting “You seem to be doing well for someone who should have post-traumatic stress disorder to the n-th degree!”

For a few years I dabbled on activism in many forms, but the question always came up “Do you know your status?”  I knew already deep down inside, but I was paralyzed by fear.  Fear of the impact on any future work on my spinal fluid shunt.  Fear of being shunned by friends and family.  Fear of losing health insurance.  Fear of wasting away to death.  Even when AZT and other early drugs we fought for came along, I didn’t see the up side of having an HIV test, not even after entering what would be a 12-year relationship with a man who would remain HIV-negative when we parted.

As I’ve written before, what pushed the issue of testing was contracting hepatitis A asexually in 1998.  Having my HIV status documented was a relief, and the issue was finally out where my doctors and I could do something about it.  My body’s dramatic response to HAART gave us the first indication that my history with HIV had to do with more than dumb luck and blissful ignorance.  I resisted my doctor’s encouragement to get involved with clinical studies for nearly seven years, choosing instead to engage in experiments of my own—with my doctor’s involvement—by keeping pill burdens down and choosing creative regimens.  Over two years of remaining undetectable on Ziagen monotherapy was the next major pointer to a host factor giving me an extra fighting shot against the bug.

When I finally chose to prepare for a clinical trial at NIH, stopping meds on the morning of October 1, 2005, was by far the greatest leap of faith that I had taken since popping my first AZT pill in June 1998.  When the researchers found six months later a genetic characteristic connected with a vigorous and potent immune response to HIV, it took days to fully digest the news.  It took weeks to forgive myself for not getting tested back in the 80s or early 90s.  Back then there was little hope at first, then came meds that failed easily.  Having been deprived a physical and emotional rollercoaster in the dark years of HIV still doesn’t seem a just tradeoff for potentially infecting other men along the way.  I stay active as a research volunteer to help lighten the karmic baggage, I guess.

And I detest the word “miracle” or anything like it being applied to my condition of being off meds over 80 weeks with a negligible viral load and “healthy” CD4s—two silly 19 year-olds gave me the genes when they created my first few cells.  While I am by and large contented, sometimes the “blessing” feels like a curse.
Title: Re: Introduce yourself
Post by: alterman on April 30, 2007, 04:05:56 am
I was dianosed in 1986 and i am still working and holding my own.I get a cold every now and then but I always bounce back like a champ.I give all praise to Jesus Christ.
Title: Re: Introduce yourself
Post by: FunkyMonkey on May 02, 2007, 09:10:09 am
Howdy everyone!!!

I'm Mark or Marco as my family likes to call me.  I tested positive July 13th 1991 at my discharge physical in the Navy.  I NEVER thought about HIV.  To me well forgive me, it was something that happened to Gay men and injection drug users--I'm neither.  But ahhhh...all it takes is falling head over twigs and berries for a georgeous model sex-pot (and you find out later she shot heroin with her manager/boyfriend) who was HIV positive and didn't know it--add to that a case of the clap and badda-bing...

After taking the first three years (my original prognosis from the Navy doc's) to find new and interesting ways to try to end my life, I was guilted into going to a support group.  The Gay men there simply saved my life.  They put humpty-Humpty back together again.

In 1992 I married my high school sweetheart and we're still together.  She's still HIV negative!  Yes we're kind of poster-kids for eroticized safer sex.

In 94 I decided to stop trying to die and figured I should find a way to live at peace and make a difference.  I've worked in HIV since.

I've had terrible times and amazingly beautiful times.  Times when the grotesque overwhelmed me and times when a single moment of live is so beautiful I'm struck dumb and can only cry at receiving such a gift as the space in between my breaths.

Sometimes I think confronting HIV has allowed me to become the man I always wanted to be--no excuses and no longer living for anyone else's expectations.  I opened myself to my potential and have become an artist, writer, musician, flyfisherman, activist and hopefully a friend.

All in all, I'd say I'm fucked up, fucked over, fucking enthusiastic, fucking romantic, fucking nuts fucking sad and fucking grateful.

Peace.   
Title: Re: Introduce yourself
Post by: plmgood on May 02, 2007, 07:19:00 pm
Hello from Coachella, 26 miles East of Palm Springs!
I tested Poz in July '94. Traced my infection back to a coworker in a committed relationship. I accept 50% responsibility for my infection.  Alex penetrated me without a rubber during a 3 way with his partner.  We all had been drinking and when he pulled out, I felt it but not before as I was busy elsewhere ;).

I converted to AIDS on Oct 27, '95 with PCP Pneumonia.  At that time, the docs gave a life expectancy of 18 months.  My illness had me one step from an oxygen tent, the final path to death.  Fortunately, I made it back from death's doorstep.

The worst moment in my life was when my best friend/sister Gail had to call my parents and sister to tell them I lay in a hospital bed dying!  That's when I finally came out of the closet with my family.  But, ironically, I pulled through.  I decided right then and there that I would overcome my demons of life and fast track myself to become the man I was meant to be.

I gave myself 2 yrs as I thought my time was limited and now I am whole.  I always say HIV "saved" my life! Gawd, it is 2007 and I just turned the big 5-0!!  I have been a treatment failure since 1996.  Maraviroc was my hope but failed. Now getting into another trial.  But I'm not disappointed.  I have been lucky to have my seriously weakend immune system keep me healthy over the years.  My numbers may be bad but not my spirit.

I met my partner Allan online and have moved out to the Palm Springs Valley to be with him.  He's HIV poz and is divorced and has 2 grown children.  We celebrate 4 years Jan 9, 2008.  I finally made my peace and by the grace of God, I'm still kicking and screaming.  Quick question?  Anybody experience male "hot flashes" and sweats?   Seriously guys,  I've become moody at times and also perspire frequently.  I need it cold at all times, and occasionally I jump into the pool to cool my body down.  I get a testos. shot every 2 wks.  Is it something that goes away as I age?  I do dislike any type of humidity, except Hawaii, of course. 8)

My daily motto is LIVE, LOVE, LAUGH!  Along with a positive attitude does wonders for the immune system. ::)   Now, I am entering the second half of my life and can't wait for the paths to be revealed!!

Live long and prosper, y'all.  Hailing frequencies close,

Starship Cmdr Billy P ::)
Title: Re: Introduce yourself
Post by: wishihadacat on May 02, 2007, 07:55:21 pm
Welcome aboard the wonder of it all, Billy and everyone else. It sounds like your head is in a great place, and that's half the battle. This thread is attracting a lot of views; let's hear from all of you out there...
Title: Re: Introduce yourself
Post by: OzPaul on May 02, 2007, 09:12:59 pm
A big, hearty welcome to everybody  ;D

Our numbers here keep growing. I'm heartened to know that there are many LTS's here at the Forums and out in the world. I hope and pray that with continued medical and scientific advances, that better less toxic medications will come to those of us affected by HIV/AIDS.

I would also hope to see that day that everyone who needs medication can afford it or that governments will find and /or allocate the resources for universal coverage.

in Peace and Love
Paul
Title: Re: Introduce yourself
Post by: asaint on May 08, 2007, 09:55:44 pm
Hi all, I’m 48 yrs old, Originally from New Jersey now taking up space in Florida.. I was married in January ‘84 three weeks later my sister Elise died of cancer, then two weeks later my Mom died. The night my son Robert was born in July my best friend was stabbed to death while we were out partying. June another good friend died of a over dose of heroin. Then in October I received registered mail from North Jersey Blood Bank that I donated blood to. You guess it  I tested POZ. 1984 was a F’up year for me.. Following months/years all of my drug buddies were either POZ or died
Fast forward to 1996 I ended up in the hospital with PCP and a bunch of other thing I can’t pronounce. I think my t-cells were like, < then 4/ V-load off the charts so I started meds which only lasted a year before I succumbed to drug addiction again. Sense then I been on again off again with my meds and drug addiction. My wife finely left me after 20 years cause of my drug abuse and depression. Today my liver is messed up, my cd4's are around 60 V-load <50 but life goes on all I need now is a girlfriend and I’ll be set for life Oh did I say that I’m single ladies ;-)
Bob
Title: Re: Introduce yourself
Post by: jordan12 on May 09, 2007, 01:39:43 pm
I am thankful, I that i found this forum.  I had been struggling with feeling cut off, left out and looking for support.   I started reading the posts as a guest and found that Ineeded to register and get on with it. 

I live in so Cal, have for the majority of my life.  I was diagnosised at the time of my seroconversion in 1985 and was a symptomatic until 1996, and then only had chronic sinusitis which was controlled by antibiotics,   was hospitalized in 2004 with PCP, began meds immediately and have been compulsive about  taking them since then.    I am healthy, working fulltime and trying to not get overwhelmed by worry and lonliness.   

I find the forum to be helpful, just in knowing that there are others out there.
Title: Re: Introduce yourself
Post by: kellyspoppi on May 10, 2007, 12:14:59 am
 ;D hi all and thankful to meet all you fellow LTS"s. since i began posting over the past year, i have been amazed at the openess of the many of you that are contributing on all these forums and the tremendous amount of support you show to those who enter. keep up the great work.

i'm a 56 yr old hetero male married to a hiv+ woman now for 13 years. we live in upstate ny and have our own business. i have been an insurance agent for 32 years and my wife has been my office manager since we married. we currently own my parents old house in the town we both grew up in.

i have 1 son, 28, who is currently serving in the navy on his second tour of duty in the navy in san diego, from a previous marriage. he has blessed us with 4 grandchildren.

after my first wife and i separated in 1985 i met joanne. like leatherman, i would like to dedicate this post to her, for if it wasn't for her courage and will to live, i may not have had the purpose driven life to accomplish all that i have since becoming positive.

joanne had dealt with lupus in 1984, and after 250 blood transfusions, and being pronounced dead twice, she somehow survived that ordeal. soon after leaving the hospital, she left her abusive husband and somehow crossed my path in a club soon thereafter.

for me it was like love at first sight, but because we had both just gotten out of horrendous marriages, we spent the first 2 months of our relationship really getting to know one another over marathon phone conversations. in august of 1985 i took her to tina turners' private dancer concert in saratoga springs, and later that night we made love for the first time.

unbeknown to the both of us at the time, this long anticipated romantic exchange would also become the moment i was infected with hiv. a year later joanne was notified that the blood she was given to keep her from dieing of lupus would also become the blood that took her life with AIDS.

joanne's initial diagnosis was ARC, back then a diagnosis just short of aids. she was one of the first folks in our town to take azt,  24 pills each day. as time went on, joanne had to be transfused with red blood cells as the azt was reducing the oxygen in her blood. as exhausted as she would appear the day before the transfusion, the morning after she would be up at 6am, beach boys blasting, dancing with her vaccum cleaner while i was sound asleep in bed.

in 1988, joanne was diagnosed with a tumor on her lung, went through 8 weeks of radiation followed by fusion injections which would totally knock her out.  the fact was she was never to rebound from that tumor, and one night, totally out of the blue, joanne sat up, began convulsing, and shortly thereafter she died in my arms.

through it all she never gave up hope, never complained, lived life to the fullest, and loved me the way i dreamed it would always be with my life partner. she has been memorialized, like so many others, on a panel of the names project aids memorial quilt.

as long term survivors we have all suffered through our losses. for some, like killfoile mentions, those losses became a driving force behind something neither he nor i knew we had deep inside us. i would like to think my passion for activism is based on an uncontrolable need to make sure joannes death wasn't in vain, just as killfoile mentions his passion is derived from the many he has lossed, and continues to lose over the years.

whatever the reason, as you continue to view these posts of mine over several of the forums, please know that through my experiences advocating for those of us trying to gain access to care, adequate funding for new and improved life saving meds & services, fighting with ASO's to make sure that they continue to provide for the changing needs of their clients, and putting an END TO STIGMA, i do so to honor joanne and the many others who paved the way to make all these benefits we share in possible.

kellyspoppi     
Title: Re: Introduce yourself
Post by: GoodMatchHawaiiRetreat on May 15, 2007, 12:29:23 am

 Quick question?  Anybody experience male "hot flashes" and sweats?   Seriously guys,  I've become moody at times and also perspire frequently.  I need it cold at all times, and occasionally I jump into the pool to cool my body down.  I get a testos. shot every 2 wks.  Is it something that goes away as I age?  I do dislike any type of humidity, except Hawaii, of course.
Starship Cmdr Billy P ::)

Aloha Billy,  regarding the hot flashes... I began experiencing them after starting testosterone shots.  I've adjusted my shots to every 10 days and teh cycle seems to work much better with less hot flashes and emotional flares.  (I was experiencing fits of anger and depression - felt menopausal!!!)  now that I'm on the 10 day cycle and very consistent i haven't experienced the hot flashes nor fits of extreme emotion.
Be sure to have your dr monitor your testosterone levels as well.  If they get high it can also cause those side effects.
Congratulations on your awesome relationship!  Live well, live happy!!!
Title: Re: Introduce yourself
Post by: furbear on May 15, 2007, 08:41:33 pm
Howdy everyone...guess I'll chime in here.  My name is Mark and I found out I was HIV+ on the Ides of March 1990.  Somehow I woke up that day and just knew.  I believe I've been HIV+ since an unexplained flu-like illness in 1986.  My t-cells have been up and down and are now at 92 with a undetectable viral load.  I've been on most meds and don't have many options left.  I'm part of a small (approx. 17%) group of people termed discordant responders (VL+/CD-).  My t-cells are down and my viral load is down.  My t-cells have never really gone up as a result of being on meds.  So. in a sense the antivirals don't work for me.  My problem is immunological, not virological.  There's nothing out there approved for treating t-cell depletion.  My doctor and I are at a loss for what to do now.  I live in San Francisco and my doctor  is considered an expert at treating HIV.  I'm sensing a loss of control here.  I've been on HIV disabillity for ten years.  I don't have a lot of energy these days but then again I'm 51 (it's a good thing...).

I have great support.  Two very loving relationships, my ex-partner and my boyfriend, both HIV-.  Thank God for people willing to love us when we feel unlovable, huh?  I'm attending school part-time studying, of all things, molecular biology.  I'll probably be 70 by the time I finish but I'm determined to finish.

Hope to connect with other people dealing with the same issues.  Peace, Mark 
Title: Re: Introduce yourself
Post by: rog_london on May 16, 2007, 03:57:30 am
Well, I'm new here, and having been positive since 1996 I feel like a newbie in another sense - especially when compared to you guys who have lived with this for a good many more years. I think this forum should be compulsory reading for all (usually younger) who think that HIV is a minor inconvenience, nobody dies from it any more, and modern treatments are easy and safe....

Nevertheless I recognize I'm lucky - so far.

I got hit as a result of a condom split. It wasn't even a pleasant fuck, because the guy was clumsy and I knew when the condom went I'd almost certainly got a problem. The good thing was knowing just WHEN it happened and getting tested ASAP - in my case two months later. This revealed an interesting thing in my case apart from testing positive - despite the fact that I'd only just 'got it' and my viral load was undetectable, my CD4 count was only 360. If I'd been tested some time after infection and got a reading like that I'd have thought I was in for treatment very soon, but knowing that 360 was normal for me (because the virus would have been unlikely have had an influence so quickly) saved a lot of unnecessary worry.

The rest of this is boring really, and obviously that's good. In the 11 years since, my CD4 count has ranged from 320 (about two years in) to 560 (once) but usually floats around the mid 300s to the mid 400s. My VL once hit 115,000, was around 55,000 for a couple of years, and is now at 12,000. I haven't done anything different in that time to influence things, and I haven't had any symptoms or treatment. In other words life goes on as normal.

Just before Christmas 2004 I got the flu, and badly. However, I bounced back from that with no problem other than a course of antibiotics from the doctor because the flu left bronchitis (which is common enough and not related to HIV) and I returned to work after three weeks. I had shingles in 2005. This could be HIV related but people my age (62 yesterday) get it anyway. No recurrence of that so far. And that's about it. I'm working full time, and I treat this on a 'need to know' basis - i.e. most people don't need to know.

When I tested positive the doctor told me that after ten years of reasonable stability you can call yourself a 'long term non-progressor'. They've moved the goal posts a bit since then - currently you need to get to 15 years before you get your long service medal - but I'm hopeful. As with most of us it's a day-by-day thing and you just never know what may happen or when, or even if. I'm an engineer, and I think it's what you might call a parallel to the medical profession in that many of the same thought processes are involved - and it looks in my case as though my immune system is coexisting nicely with the virus. Long may that continue. When I got diagnosed I had thought that maybe I'd be lucky to get to 60, but it now looks as though I may see the doctor at the clinic retire - and that definitely was not 'on the cards' in 1996.

Finally, I have to say that here in the UK we are very lucky, or maybe I just happen to have landed in the right GUI clinic. For the benefit of this largely US audience, here we have medical care automatically available to all in the form of the 'National Health Service', and while it may have its shortcomings, these are definitely NOT in the area of STD treatment and care. The clinic where I was diagnosed and which I visit every six months for blood tests and a chat is attached to a large hospital. The doctor who deals with me runs the clinic with a small staff of doctors and ancillary staff, all of whom are very welcoming, friendly and helpful. The doctor is a motorbike rider (like me) so when I'm there we talk more about bikes than HIV. It's very sociable, and I always enjoy the visit. I feel I get good advice and proper information and lots of encouragement.

These clinics are completely confidential. Patient records are kept locally and you can decide not to inform your own doctor or anyone else. In fact, they'll treat you with no information at all - if you're so paranoid you don't want to give your name and address, that's OK with them. You have a patient reference number, and other than that it's all on first-name terms, and that includes the staff if you're a regular like I am. It's all an impressive combination of efficiency and a pleasant ambiance - and remember no money changes hands - that's all paid for by our taxes, no matter how expensive the treatment.

I think that's about it. Sorry I can't tell you how I have 'coped' with the difficulty of life 'living with HIV'. Maybe that's in the future - maybe not. I feel like I'm cheating the system after reading some of the other stories on here, but I'd be the first to admit that so far I've been very lucky. Somebody up there seems to like me - a bit.

Rog.
Title: Re: Introduce yourself
Post by: DanielMark on May 16, 2007, 02:47:06 pm
Finally, I have to say that here in the UK we are very lucky, or maybe I just happen to have landed in the right GUI clinic.

Welcome Rog,

We in Canada are equally fortunate to have health care for all, which provides access to "universal, comprehensive coverage for medically necessary hospital and physician services.” Without it, I would no doubt be dead by now.

Daniel
Title: Re: Introduce yourself
Post by: rog_london on May 18, 2007, 12:55:49 pm
Thank you for your kind wishes, Daniel. I only recently started to look through these forums, and the more I read the more I realize that so many people have really had a rough ride. Also, this is one of the few occasions when I can see that living in the 'land of the free' ain't necessarily a good thing.

Even in Europe they haven't really got things as well sorted as they have here. I have a young Romanian pal who has just qualified as a doctor in Germany (Not HIV+, of course) and he tells me that it's by no means as easy to get tested and treated as it is here. In Germany they want to know who your partner(s) were so they can call them in for treatment, which I think is a VERY BAD IDEA. Official policy in the STD clinics in the UK is that all are welcome with or without an appointment and there's no pressure to tell anyone who you slept with or anything else. They have realized that it's much more important to get people through the door so they can be treated and advised, and not sensible to frighten them off with the threat of making them reveal things they don't want to reveal.

We don't always get things right - who does? - but I think whoever worked out the system for the GUI clinics here knew exactly what he or she was doing, and I'd be first in the queue to shake them warmly by the hand. It even extends to disguising the purpose of the clinic - mine is called simply the Patrick Clements Clinic, and there is no mention anywhere in the hospital of its function.

I do notice, though, that in the years I've been attending there the numbers they're dealing with have risen dramatically. The operation has expanded quite a bit since 1996. This is rather depressing. Of course, it's not all HIV, but no doubt HIV goes hand in hand with the sort of activity which leads to other STDs.

My keyboard runneth over - and I'm in danger of entering Grumpy Old Man mode. In that vein someone in here who shall be nameless and is a few years younger than I am was bemoaning 'being elderly'. I'd just like to kick his ass (good naturedly of course) and say 'speak for yourself'!

Rog.
Title: Re: Introduce yourself
Post by: CaptCarl on May 19, 2007, 12:02:30 am
   Hi everyone, my name is Carl. Sometimes known as Captain Carl, sometimes known as "that asshole with the long hair" I have been poz for 19 years this summer, I am 42. When I turn 44, I l plan on having a "Half-Life Party" as will have been poz for half of my life at that point. When I was diagnosed, the doc told me that I had 18 to 24 months to live. I was living in a small town in Connecticut at the time, and small towns don't have many secrets. Some of the local wildlife made things pretty unpleasant for awhile there. I live in New Mexico, and have for the last fifteen years. I am doing very well healthwise, and only started taking meds about a year and a half ago. I don't know what my numbers are, nor do I particularly care. What matters to me is how I actually feel, which is pretty good most of the time.
   I work full time as a landscaper, have a partner who is negative, he is very supportive and kind. We have three dogs (the "kids") Waldo, Baby Elmo who are Appenzellers, and little Rindy,a Boston Terrier (Terror?) crossbreed. I was diagnosed with Liver Cancer in November, and am receiving "treatment" for it. The treatment consists of injecting ethanol alcohol into the tumor every few weeks to keep it from growing too big, until such a time as I can have a Liver Transplant. You guys simply cannot imagine what big fun this is, I don't know how I ever got along without it!
But I refuse to be set back because of this, and in the best Damn The Torpedoes, Full Steam Ahead tradition, I began the process for getting a Mortgage to buy a house we found for sale in the mountains outside of Albuquerque, where we currently reside. I am also an artist of the painting persuasion, and a gearhead who loves working on old cars. Currently a '63 Caddy deVille, '86 AMC 4X4 wagon, and '57 DeSoto consume all my extra energy as well as extra money. I'm looking forward to participating in this forum. It's nice to be here.
   Capt.Carl....(who is enjoying the Hell out of a good thunderstorm as he writes this)
Title: Re: Introduce yourself
Post by: oaktree on May 23, 2007, 08:53:43 pm
Hello from Jim in Sacramento.

I tested poz in 92. Think I got infected in 83. My Doc. never thought he should put me on any meds. My vl is <50, cd4 1087, cd8 573. Sometimes I wonder if the shoe is going to drop. Go to nih twice a year for the LTNP study. I try to live every day in the moment. Don't know what else to say. I am blessed.
Title: Re: Introduce yourself
Post by: hudstar on May 24, 2007, 10:38:25 pm
Hi - my name is Lincoln.I have been POZ since 1988.I was infected the first time I had penerative sex and in my first relationship. Recently I have come out as being POZ after a doctor convinced me things had changed. For me I ran around the world for many years trying to stay away from my country (Australia) because my memories of HIV was one of rejection and violence. Somehow things changed and I missed the boat. I also trialed many of the pills now on the market taken for granted. I remember bloating, vomiting, bleeding and fainting during some of these trials as they calculated dosages and researched side effects. For me, if it was not for travel and exposing myself to the adventures I had, I think I would have let HIV take me over. I also kept a journal during those early years to record my life to be given to my family when I died. Unknowingly I recorded an era in detail and have empoweried myself by rewriting this into what I hope is my first book. I went to my first National AIDS Day last December 2006 and mourned for the first time in 19 yrs in regards to HIV - I had not forgotten those early years where people just died around you - work mates, the guy you flirted with last month, it was relentless. I also realised during World Aids Day I had compassion rather than anger - that was a great realisation. l cannot make sense of why I am here while many are not, I do not feel guilty nor lucky.  I still carry the urgency and impotance to absorb as much of life, culture, travel and nature as I did 19 years ago. Maybe that is not such a bad thing, I seem more life loving than non HIV people sometimes :). I will say that HIV has marred my feelings of sensuality and I still approach intimacy with much caution...... I'm working on that one. I guess I have a lot of learning to do in this new HIV environment  ???
Title: Re: Introduce yourself
Post by: hudstar on May 24, 2007, 11:11:40 pm
I forgot to write, Im 41, resistant to most HIV drugs, CMV clear (haven't kissed enough guys I guess ....LOL) and survived aggressive lymphoma in 1999 when they told me otherwise. While on an AIDS ward I was planning to continue my travels and gladly survived like I knew I would. I travelled Europe shortly after my radiation treatment was over then put myself through a 4.5 year University Post Graduate course.
Title: Re: Introduce yourself
Post by: breathe_sunshine on May 25, 2007, 11:55:14 am
hiya , my name is Donn. Hiv+  since 1988.I'm single and looking  ;)
Been living in The Netherlands all my life, close to amsterdam.
Started with meds 6 years ago and since then my viralload went from a cuple of million to undetectable!!
and since about 2.5 years my T4count is over 700 everytime its checked!!
Was given up in 1988 (Was told i had 2 years to live at the most) but i'm still here YEY!!!!

Edit: forgot to say I'm 36 lol!!
Title: Re: Introduce yourself
Post by: tonyflorida on May 28, 2007, 07:58:10 am
Hello from Baltimore, Maryland   :)
My name is Tony, age 44. I'm celebrating my 19th year this weekend, I was diagnosed this time in 1988.  I started Meds in 05 after being diagnosed with lymphoma. I went through the standard rounds of chemo where all went well.  My viral went undetectable and my T4 count hovered in the 800s.  As of recently my T4 levels have dropped to the mid 200s and my viral load is at 844 ???  I'm afraid that things are beginning to spiral down whereas I'm beginning to show signs of Lymphoma (everything except the enlarged nodes).
I'm still handling this with a smile I think attitude and good music, along with a little denial play a major role in all of this. I routinely put this issue in the back of my mind where it's it's forgotten about for the most part (until it's meds time) and even then, meds are viewed as vitamins. I find that that's the easiest way to get them down. 
So, I'll keep you all posted with the results of my labs.

I wish everyone good health,
Tony
 
Title: Re: Introduce yourself
Post by: PeruvianStraigthGuy on May 29, 2007, 10:59:41 am
Nice to meet you all!!!
Before, let me show my apologies because my not-perfect English management...I'm jut writing from Lima, Peru. My Name is Walter, age 39, I was diagn. in 1996 and I was infected in 94, by my girfriend, she passed away in 2000, and she just realized have the HIV only three weeks before her dies.
I start my ARV treatment en 1999, My cd4 is in +/- 300 an my VL is <50 (Undetectable)... Let me tell you guys, Here in Peru is very hard be a person livin' with HIV/AIDS, believe me!, because the ignorance, the discriminnation an the prejudices, even I'm a straigth (Heterosexual) Guy, I show my respects to all kinds of sexuallity options, because I was living overseas for a few years, and so, I can learn looking another cultures....
Now, my great problem is the lonelyness... I broke my last relationship in 2005 (With a HIV infected girl too) and , later, I fall into a deep depression, maybe until today.
I hope I can recipe some cheers from this community!!!

God Bless You All,
Walter from Lima, Perú.
Title: Re: Introduce yourself
Post by: CaptCarl on May 29, 2007, 09:17:18 pm
Walter,
   Welcome to the forums! It is always nice to hear from other people in other countries. I like to get perspectives of this disease from people that live elsewhere in the world from myself. Thanks for bringing a fresh persective :)

Capt.Carl
Title: Re: Introduce yourself
Post by: DanielMark on May 30, 2007, 05:59:50 am
And hello from Canada, Walter.

Daniel
Title: Re: Introduce yourself
Post by: J.R.E. on May 30, 2007, 08:10:41 am


Tony and Walter,.... Welcome to the site !!!


Ray
Title: Re: Introduce yourself
Post by: xyahka on May 30, 2007, 08:44:21 am
hey hola, me llamo juan carlos y soy de Sur America.

solo queria saludarte ya que vi que eres de Peru, que bueno que hayan mas latinos en este site, por ahora habemos pocos, pero es chevere que te nos hayas unido.

Lei tu post y me alegro que estes aqui, yo tengo como un mes y un poco mas, y la gente aqui es muy buena onda, te van a caer bien.

te envio un gran saludo amigo.

Juan Carlos

/edited: I am sorry somehow i though i was writing a PM to Walter.... (i just woke up....) that's why i wrote to him in Spanish, sorry.....i think that i cant delete the post so i better explain my mistake... sorry/
Title: Re: Introduce yourself
Post by: PeruvianStraigthGuy on May 30, 2007, 08:48:33 am
 :D
Thank you all, fellas!!!
I wish my permanence in this site will be grateful!!! Please ask me anything you want about Peru and people who lives with HIV/AIDS in here, We have not the development ( mean cultural and about the tratment ) than you have in your places, meanwhile, many people stills living with the virus without to know they have it!.

I will appreciate all tips about how to care myself too!
Best regards
Lo mismo para tí mi amigo Juan Carlos, Dios te bendiga y un gusto conocerte!!!

Walter
Title: Re: Introduce yourself
Post by: Edmundas on May 31, 2007, 03:04:23 pm
Hello, everybody!
My name is Edmundas (or Ed - whatever). I'm HIV+ gay guy from Lithuanian city Klaipeda. I was diagnosed at Summer '96. So - 11 years ago. Hope to have fun and loooooooooooong life together with all of you  ;)
Title: Re: Introduce yourself
Post by: aztecan on June 01, 2007, 09:48:17 am
Welcome Tony, Walter and Edmundas.

I am very glad you found us and look forward to getting to know each of you better.

Wow, we really have become an international community here.

HUGS,

Mark
Title: Re: Introduce yourself
Post by: Edmundas on June 01, 2007, 10:43:07 am
Dear Mark,
Thank you for your joy of us joining the forum.
Greetings from Lithuania!
Title: Re: Introduce yourself
Post by: OzPaul on June 05, 2007, 04:54:07 pm
A big welcome to Donn, Walter and Ed  ;D

As Mark said, we are indeed a global family !

I hope to hear more from you guys as you get to know us and the Forums.

BIG ((((HUGS))))

Paul
Title: Re: Introduce yourself
Post by: geraldinapell on June 15, 2007, 05:16:06 am
Hi,
I'm Geraldine and i live in Holland.
I got infected by my sons dad he never admitted it to his self that he had it let alone tell me ... I only found out coz his ex was playing around with his brother and he was acting strange about it and coz i was preggers at the time my hormones were raging and i was jealous so that's when he told me that she had aids!!!! so i asked him "what about you then?" he said he didn't have it, so i left it at that, I was after all 6 months pregnant and i didn't want to know i mean at that stage of pregnancy you can't have it aborted anyway!!
had the baby who by the way was a strapping lad so i thought no more about it we were still together anyway so no need.
2 years later we'd split up and he got really ill with diarrhea and so did I plus I was dating again so thought it may be a good idea to have the test and that was it I'd got it!!! :o
Anyway he died shortly after that a year later i think from pure shame coz he had known all along that he had it but wouldn't accept it stuck his head in the sand but his ex and me are still alive and kicking and our son was born HIV free, which was very lucky coz i breast fed him as well for 4 months on his fathers word that he'd not got it!!!
Anyway it's been 13 years now since i found out and I'm still going strong, started working full time beginning of this year coz i wasn't so tired all the  time anymore thanks to better meds.
Title: Re: Introduce yourself
Post by: sharkdiver on June 15, 2007, 08:29:38 pm
Howdy.  I really appreciate reading the topics and comments on the forum.  Thought I'd introduce myself.

I too have been a longtime survivor: tested positive in 1985 although I was probably infected around 82-83 (when I was about 15) Certainly not the best time in our country's history to not only come out, but to be poz as well.  I had a horrifying experience finding out my senior year in high school. I was called in, the nurse gave me a pamphlet about finding a doctor, a pamphlet about nutrition and what to avoid, and to top it all off she handed me a pamphlet from a funeral home with the reassuring advice that "you probably want to take care of this now."  Fortunately I listened to the voice in my head that said that this was bullshit. 22 years later, more than half of my life dealing with it, I'm still healthy and happy to be around. I guess its been an "unfortunate gift"  (although I'd like to return it) but its made me a stronger person.

take care,
diveswsharks
Title: Re: Introduce yourself
Post by: appleboy on June 15, 2007, 09:02:55 pm
I am only 2 years poz but I wanted to say thank you to each of you that have posted in this topic.  This topic has helped me gain more hope. So from the bottom of my heart thank you all!
Bill
Title: Re: Introduce yourself
Post by: TimmyT on June 25, 2007, 10:34:40 pm
Hi Everyone, just checking in here at the LTS forum. It will be 18 years this September since seroconverting and I will be 41 in a couple of weeks.

It's been a strange trip, but definitely, it's been an interesting trip so far. Hopefully, this little journey of mine will continue for many many more years to come. Is it strange that I want to live to be 100? I don't know if I will ever get there, and odds may be against it. But it is one of those wild little goals that I keep in the recesses of my mind, and tucked away deep within my heart.

Anyway, I raise my glass to all of you who have come a long way with your virus, and I drink to your continued longevity and good health. Cheers!  ;D
Title: Re: Introduce yourself
Post by: atxpozguy on June 26, 2007, 05:10:38 am
Hello everyone, my name is Pat, my best guess when I became poz was before we had testing or even knew about HIV/AIDS because I tested poz in '82 if I remember correctly with all most of my friends when I was 25 years old, come August 29th, I will be 51 years old. I have lived in Austin, Texas for the past 8 years, before that, 7 years in San Antonio. I grew up in Nederland, Texas which is 90 miles east of Houston, Texas.

I have younger partner that was our houseboy when my late partner of 15 years that died after a long fought battle with numerous infections and a 0 CD4 count for his last 6 months. I was with my loving partner the day he passed away peacefully, Now, that houseboy is no longer a boy but a educated young man of 26 years old who has been a tremendous help to me during several episodes of near death illnesses since 2001 when I was diagnosed with AIDS.

I am currently taking Lexiva and Truvada, the only meds up until recently, the 4 different virus mutations I have that are not resistant to. Of course, I have had some terrible experiences with the various other meds and horrible drug trials which they couldn't pay enough the participate in again.

Other than the nagging never know when it strikes neuropathy that creeps up my legs to my knees, I find myself doing much better these days. Of course when I become ill with anything, I make an appointment to see my doctor before it has a chance to get worse.

I have several hobbies, none my partner like to do, but the two young guys that I am mentoring love to go fishing, hiking, camping and just laying around the house watching movies while one of us is online.

I quit working fulltime back in 2002, mainly because my health at the time would not permit me driving a commercial truck, plus I just didn't have the energy I once had before being diagnosed with AIDS. Going from making $8000 a month to $1072 a month SSDI takes time to adjust, but I did and enjoy the quality of life I have today surrounded by very loving friends and partner.  8)

Here in Austin, I am involved in my community, do alot of speaking before our city council about issues that the low income and less fortunate get royally screwed because of special interest votes. I have a website that I founded, www.texastowingcompliance.com, to which I am known as the leading consumer advocate for consumers ripped off my towing companies. I speak at local high schools about HIV/AIDS and what they can expect if they become infected and the importance of safe sex.

I have dog, his name his Nicky....

I chose Austin,Texas to live my remaining years because of the excellent healthcare for persons with HIV/AIDS, the unrelenting community support, a very open gay community and the excellent year around weather.  ;D
Title: Re: Introduce yourself
Post by: dbmathews on June 26, 2007, 11:15:41 pm
Hi folks.  I tested poz February 1993.  Seroconverted around Christmas time 1992...  was sicker than a dog that Christmas with what my doctor called influenza.  The guy I had been dating had known he was poz but didn't tell me.  I heard later on from friends.  I find it curious that on his current personal ad at POZ.com he states he only plays bareback.  What a load of crap, and a lack of responsibility on his part.

Yes, it takes two to tango and I've have taken on the responsibility of being infected.  I already knew better, having lost too many friends in the 80s in Jacksonville, Florida.  I used to feel like I let my friends down, knowing what they went through.

Still a Red Cross certified HIV/AIDS instructor, although the Red Cross dropped the program 3 years ago.  Trying to make my corner of the world a safer, happier, and hopefully more educated place.  LOL  Wish me luck.

I work for state government and thankfully have decent health and disability insurance, plus a decent retirement plan.  I'm here for the duration, or until a cure is found.  When a cure is found, then all bets are off...  I may be looking for a warmer, drier place to call home.

Take care you all, and keep the faith!

Don
Title: Re: Introduce yourself
Post by: poobear on June 27, 2007, 01:46:42 am
Wanted to chirp in.  My name is Rachel.  I was diagnosed July 1994.  I was 18 yrs old.  Now I am 33.  Living with HIV for 15 years in July.  It has been a bumpy road.  I was put on meds about 1 year after diagnosis,  and have been on different cocktails ever since.  My numbers are great.  I have never had an OI.  I was infected while in drug rehab,  while I was there I couldn't have my drug of choice so I had sex, and of coarse no condom ,so unprotected sex,  I remember getting out of rehab and having the flu really bad,  I did not know at that time that this was the HIV in my system.  Anyway I am doing great and am going for disability for headaches not my HIV status.  I wish everyone the best of health and I am truly grateful that I am still here and able to say that I am doing well.   I have been with my partner for 12 years and she has been a great support.  Much Love to all Rachel
Title: Re: Introduce yourself
Post by: newone on June 27, 2007, 09:22:15 pm
I have no idea when I was infected but as I lost so many ex partners and friends to Aids in the late 80s I can only assume that I was infected at that time (who knows??).
After a routine eye test check up (two years ago) I was diagnosed with a mild eye infection and at the same time I was persuaded to have an HIV test (never been tested before) ...the test come back positive with a cd count of 202 and subsequently I have been on sustiva/truvada since.
The new millennium has not been kind to me after a wild, happy (in moderation) and heath-problem free existence I split up from a 12 years relationship to find myself older, alone and hiv. (still gorgeous!!)
I am still alone, hiv and getting older but in general I keep busy with my work and "not" much has changed to my attitude to life.
I experienced a very happy chapter of my life and nowI am left with fantastic memories and I am trying to cope as well as I can with this new and different chapter of my life.
I am not sure why I find myself completely isolated and without real friends, sometimes I blame HIV (and sustiva) and often  temporarely realise that perhaps I was destined to live my life as I am living it and the combination of being gay, my job, being older and all the circumstances that surround my present existence have resulted in my present status quo.
Title: Re: Introduce yourself
Post by: Nancy on June 28, 2007, 12:42:31 am
Hi all,

A few of you know me.  Most of you don't.  Been a long time since I check-in.  Been too busy trying to forget I've been so ill.

I'm 53 and was diagnosed in 1993.  But for all practical purposes, i've been living with this disease since 1985 when my younger brother was diagnosed and died 5 years later.  So me sitting here all these years later is the ultimate of stupidity!!

I was abandonded by the man who infected me and met my husband (who was then, and still is HIV-) a year later.  He just gave me a ration for actually forgetting our 12th wedding anniversary a couple weeks ago. 

We've gone thru a few hard years with me in and out of the hospital with cancer surgery's, radiation therapy,  2 intestinal blockages (caused by the radiation), then had to have 2 feet of intestines removed because they fried them too much.  Then another cancer surgery.  Oh well, I'm still kicking.  Along with dietary changes because of meds, I had to make the ultimate sacrifice..... DAIRY!!!  I didn't realize how much I loved my Lactose!!  Gave up drinking, then a few years later gave up smoking (after 30 years), then to have to give up Ice Cream and Chocolate!! 

Ok Moffie, I checked in ;).....  Where are my roses!!!!????  Love you
Title: Re: Introduce yourself
Post by: ubotts on June 28, 2007, 01:19:50 am
Hi..
I learned in 1987 i had hiv..at that time my t cells were 675 and i was told not
to worry. Ha easy for her to say..I was 33 yrs old then..I didnt want to take
meds because i seen what it did to my lover, who died of aids in 2001. I waited
till 2004 to take meds....I put it off as long as i could..Didnt want to deal with
the side effect..But one day i was xmas shopping (which used to be fun) and
i was dragged around by my friends in the stores..I felt like crap..3 weeks later
i knew something was very wrong. So i went to an infectious diease center in NYC.........My tcell were down to 27 and my VL was sky high..So they put
me on sustiva viread and videx..Sustiva get me nightmares and eventually it
didnt work for me anymore..so then they put me on that one a day pill Tresavar/
(not sure of the correct spelling of that med..Well i was on it for 3 weeks and
had the squirts so bad, i demaned a change..So now iam on Combiviar and Kaltrea
which is working well..Been on this combo for 3 yrs now..My tcells went from
27 to 241 and viral load is undectable..But i cant seem to get passed 300 tcells.
I have been looking at all your numbers and all of you got past 300 tcell and better..I was told since i waited so long to go on meds, that i would never pass
300 tcells..Has anyone here had a very low tcell count and is now passed 300
tcells.....Ive had aids, which means my tcells were below 250, but then i was
back to having 302 tcells and then they say, oh..your hiv..This is bull to me..
That was before i even took any meds..My number were flucuating like crazy
without meds........Now that iam on meds for 5 yrs now, i can seem to get
passed 300...Does anyone have a clue...because i dont..HElLPME ON THIS ONE>
Thank for your time and patience..
Title: Re: Introduce yourself
Post by: CallingAllAngels on July 17, 2007, 01:24:31 pm
I'm not a long-termer yet. I got HIV about 3 and a half years ago, and I've found out recently that I've got it. I'm ready to jump into the fight, both feet first. I just want to say that I admire all of you folks!
Title: Re: Introduce yourself
Post by: ubotts on July 18, 2007, 07:07:35 pm
 ;) Hi there,
Just jump right in and ask any questions you may have.. Iam sure will be able
to help you..
Title: Re: Introduce yourself
Post by: hoyle63 on July 23, 2007, 08:42:51 am
Hey Folks!

I'm Hoyle and 44. I tested poz in 1986. Didn't get sick until ~03 when I dropped over 40 lbs and had trouble breathing. Later found out it was KS in my lung (oh the joy of an open lung biopsy!) Chemo fixed that and a couple of skin lesions that I had.

Currently retired RN and living in north Mississippi with my partner who is also poz.

Pretty nice having the time now to do what I always wanted to do 'if I didn't have to work all the time'. Would be even nicer if I felt like I did when I was younger so I could enjoy it more! Got those frequent flyer milies stacking up.

On Sustiva/Combivir since Aug03. The hallucinations and dreams from the Sus ave subsided somewhat , but every now and then I get a flashback <grin>.

Glad there is a forum out here for PLU. Wish I had found you guys sooner!
Title: Re: Introduce yourself
Post by: Dachshund on July 24, 2007, 08:00:22 am
Welcome Hoyle,

Glad you found us...we can always use another southern boy.

Hal
(who is just up the road a piece in Memphis)

Title: Re: Introduce yourself
Post by: just_joe on July 30, 2007, 04:05:46 pm
Hey guys. I'm Joe. I'm a 48 year old man living in California. I was diagnosed in 1994 but based on where my numbers were at the time the doctor guesstimated that I'd been positive for probably 12 years prior. You name the drug, I've practically been on them all. Seems like medicine keeps pulling a rabbit out of the hat just when I think all is lost. I'm currently on Prezista and TMC-125 and for the first time in a long time I've been undetectable nine months in a row and my t-cells went from 6 to 60. I think I'm gonna still stick around for a while.  :)
Title: Re: Introduce yourself
Post by: MOONLIGHT1114 on July 30, 2007, 05:27:46 pm
Hi Everyone,

My name is Cindy, I am 37 years old and live in the suburbs of Washington, DC.  I was diagnosed on 12/22/93 and seroconverted sometime in 1992.  My BF and I had dated in high school, had gone our separate ways for about five years, and then started dating again in Jan. '92.  We bought our home together in Feb. '93 and were starting our lives together!  I went for my women's exam in Dec. '93.  I hadn't tested since '91 in college, and knew I would continue to be in this monogamous relationship with my BF, so I got tested again.  I thought it would be a good idea to get a "baseline" just in case.  I was so surprised that I tested pos.  I could count on one hand (with fingers left over), the number of times we didn't use protection!  I drove home that evening thinking that I would be able to tackle this, as I had been diabetic since age 11, and was used to being on a schedule for meds, etc.  I just wasn't sure how long I would live.  My biggest worry was getting home and telling my BF that HE must have infected me because I had tested negative in college on more than one occassion.  We got engaged a week later on Dec. 30th '93, and he said he would go get tested soon.  In Feb. '94 my fiance went to get "tested" and said he was pos.  I found out from him later that he had tested pos in May '88 and had known he was pos all along!  He knew it and didn't tell me.  This was all very difficult for him to deal with, being a long-haired rock 'n' roll rebel in the late 80s and early 90s.  We married in Oct. '94 and just shy of our first anniversary, he got sick with non-Hodgkins lymphoma, hadn't been taking his AZT or anything.  I had just started on AZT around that time, in the Fall of '95.  My husband died in Aug. '96 at age 28.  I was widowed at age 26, no children.  I maintained my independence, fought to keep this home that I still live in, and kept up with my docs appts.  A month later in Sept. '96 the PIs came out and I was on them from '96 - '02.  I had started dating, and had a 2yr LTR during that time from '97 - '99.  A lot of disclosing and a lot of rejection also, but my counts were pretty good, VL good, so I considered myself lucky.  No OIs or hospitalization (even to this day).  In '02 I had a genotype done and the PIs weren't working, so I switched to Sustiva/Zerit/Videx EC.  Another LTR in 2003.  First signs of lipo in 2004.  Another LTR from June '04 until Dec '06 (I was with neg guys, never pos, still can't figure out where they are hiding.....).  Back in Fall 2005 my doc stopped the Videx and Zerit, and instead tried Truvada with the Sustiva.  In 2006 I started to get my face back some.  I have been single since last Dec., because my BF didn't want to face life with a pos partner.  I wish he would have told me sooner!  This was after we had almost completed building our new home in another state, after I had switched jobs, after I had made major lifestyle changes to get ready for my exciting new future, which I thought was a "sure thing!"  All for nothing, but I dodged a bullet by being dumped, THAT I do believe, lol.  Labs are good now (see below), I have been on insulin since age 11 (on a pump now), I have an injured neck and back with disk degeneration and fibromyalgia, and I go to see my chiropractor regularly.  I am unemployed (over 2 mos now) but holding out for a good job that is right for me, with good benefits.  This is a lot to deal with, being single and alone, but its manageable.  Somedays, barely manageable, but I am hanging in there.

I still have my mind, and now I have all of you, too.  What a gift this site has been for me over the past few weeks! 

Thanks for listening,

Cindy in Maryland
Title: Re: Introduce yourself
Post by: smalltown66 on August 01, 2007, 06:56:53 pm
Hi to all

I am a 41 year old gwm from Ohio. I was first tested for HIV in 1995 and received a HIV positive result. 1 month later had my first CD4 with a result of 8. I was immediately diagnosed as AIDS. I was immediately placed on AZT, the only approved drug at the time. My only complications during this time was Kaposis Sarcoma of the lung and lymph nodes. I was told that six months to two years was the accepted prognosis. In early 1996 the "drug cocktail" was introduced and I began immediately on therapy.

Now after 12 years I still am fighting with this disease. My numbers are fair now (CD4 400) (VL undetectable). Over the last 2-3 years, the fight with side effects has begun. First was kidney stones, then 2 heart stints. Next diabetes and low testosterone. Now Osteoporosis and kidney disease. Not complaining but very thankful to be alive.

Glad to have recently found this forum. Hope to get to know more of you.


Mr. Smalltown66 :)
Title: Re: Introduce yourself
Post by: J.R.E. on August 01, 2007, 07:30:31 pm

 Not complaining but very thankful to be alive.



Mr. Smalltown66 :)


I hear you loud and clear there !! Welcome to the forums, and thanks for sharing !!


All the best-----Ray
Title: Re: Introduce yourself
Post by: JeffreyM on August 08, 2007, 03:52:08 am
Sorry to re post, I'm new and did not notice this introduction thread, Thanks


Hello Everybody!  I'm Jeffrey from Glendale Ca, I have been living with the virus for 16 1/2 years.

While I was a child I was raped from the age of 11-15.  I lost interest in school, having a severe speech impediment did not help, I always knew the answers in class but did not raise my hand because I could not even get my words out, when I did,  I would be laughed at, called fagot, queer, blah yada  blah.  As a result of the abuse I became promiscuous at a young age. I was in the gay bars in Phoenix at age 18.

I had an original diagnosis of AIDS in 1991 with cryptosporidiosis.  I had 6 t cells and the Doctors told me to get my affairs in order.  I remember taking AZT, that's  all there was.  Somehow I managed to stay alive while many of my friends died. 
The early 90's were very hard. I was sick all the time, my friend crypto returned in 1993 and almost killed me.
I took every new drug that came out and managed to get through.  I felt horrible all the time, vomiting from the medications. I was exhausted and had a very low t cell count, I could not stay awake for longer than 4 hours, then would sleep for 10- 11 hours.  I was losing weight and kept getting fevers, night sweats, diarreah like volcanic lava erupted from me all the time. I had to go into the hospital a lot.  Getting IV's of fluid, from dehydrating and needing potasium, I kept passing out.

In 1996 My Mom was diagnosed with cancer.  I was taking Epsom and Videx, the old wafer things!  Chewing them was like  this horrible chalky taste. I also took another blue pill it was rectangular and did not go down easily. I think my t cells were around 90 or so while I was helping to care of my Mom. She had colon cancer, then it returned to her lung. In 1997 the protease inhibitor crixivan was released and the combination saved my life. It was very bittersweet because I lost my Mom Betty in August 1997.

I had severe bouts of depression and anxiety for the rest of the 90's it was very bad, zerit was added  and I experienced the pain of needles  and broken glass going into the bottoms of my feet and the palms of my hands.  I think my t cells were almost 200.   My mental  health was shattered, but I was starting to get a little better, not sleeping as much, eating more.  A year after my Mom died I met a man with HIV.  He was very kind hearted and we started to date. I was up and around and things were going good.  I met my future partners parents, and he met my Dad. I felt secure and happy, although in retrospect I think I settled because I didn't think anybody else would have me. A year after we were seeing each other, my partners Mom went to the airport and jumped off the 6Th level of the parking structure. She did not survive, so now we were  having to deal with suicide. 


This is the most gut wrenching thing I have ever been through.  I felt rage, anger, sorrow, guilt, a roller coaster of emotions.  My partner was devastated, speechless, and I could even attend the memorial, I was disgusted that a person would just give up after my Mom fought so hard to live.  I still have a question mark over my head over the catastrophe.

In 2000, To escape Phoenix, my partner and I moved to Glendale CA.  Right next door to his snottier than hell, ex boyfriend who was doing his best to be the gay Martha Stewart!  I started to feel like I should break up, but holy crap his MOM KILLED HERSELF!  So I stayed with him.  in 2001 I became sick with I can't remember what, colitis or something.  I was depressed doing these obligatory events with people I did not really like.  I made nice thought and was a good Hubby.

 We had planned to go to Six Flags on 9/11, my partner rushed in and woke me up, he said a plane just crashed into the World Trade Center. Like every other American, we sat, crying, shaking for what seemed like a week glued to the TV.  After this, I think built a brick wall around myself.  I stopped talking to people, except a very select few.

In 2003 I developed immune idiopathic thrombocenic purpura.  I was turning black and blue everywhere.  I knew I had a low platelet count, but did not know about ITP, http://www.pdsa.org/index.htm  The Hematologists/Oncologist and other Doctors were confused at first to why I had this while it is a very rare blood disorder with about 200,000 Americans living with it. Steroids were prescribed for the first part of the protocol and I ballooned from 170# to 240#.  The steroids failed, so a splenectomy was performed.  Thanks goodness it was done laproscopicly, only 4 tiny cuts on my tummy, instead of being cut from side to side. The surgery was a success.  I was told there is no guarantee on how long it would
work.

In early 2005 I stated taking down photos in our home.  I stripped the walls, took down the spice rack, the one that sat there looking the same, everything looked the same. The limbo type life I  was living.  I was surviving, but just a shell the person I used to be. I knew I had to get out of a bad relationship.  the only thing holding us together was pain.  I moved into my own place in February.  With a lot of work my previous significant other and I have remained friends.  We share joint custody of our little dog, oh thank the gods for that one without her I do not think I would have made it.
 
 I sat alone for most of 2005- 2006.  Depression, a break up of an 8 year LTR, left me just wallowing.  I went very very deep inside myself to pull out of it.  With the help of anti depressants and therapy I have walked through the pain,the guilt of my mind set of thinking why am I still here and so many talented loving people did not live.  I came out the other side just at the beginning of this year.  I'm out of my cocoon and have started living life. 
At 43 I feel so very comfortable in my skin and know that I am truly blessed. I am grateful to my doctors, friends,& POZ magazine.

I have just started to date this Spring. I have started drawing. Now I say what I feel when I'm feeling it. My entire life I felt like an outsider.  Looking in at people living life. Now I'm living life, every day every minute. If anybody would have told me in 1991, that in 2007 I would be alive, mostly healthy (fatigue and PN get me sometimes), with a 500 CD4 count and an UN detectable viral load (wait we didn't have Geno's and phenos then) I would have thought they were crazy.

 I look forward to getting to know others on this board.  Thanks for reading this and if your having a bad day, just hang in there and remember that it will get better. One book changed my life, The Power Of Intention by Wayne Dyer.  This book saved my life and the little miracles that happen all around me are proof that "When you change the way you look at things, the things you look at change". WD
 
My best to everybody here and I hope to be a great fellow forum member. A special thanks to MOONLIGHT1114, I am so grateful to have met you on the other site. Thank you making me laugh!
JeffreyM
Title: Re: Introduce yourself
Post by: MOONLIGHT1114 on August 08, 2007, 08:55:46 am
Hi Jeffrey~

Welcome to the threads!  I'm glad you finally stopped by and shared your story here.  YOU are here for a reason, sweetie.  I just know you'll be a great influence to others in these threads, and we're here to pick you up, too, whenever you need us to!

Much Love~

Cindy, your "G-L-A-M-O-R-O-U-S- straight girl!"    :-*    :-*    :-*
Title: Re: Introduce yourself
Post by: kellyspoppi on August 08, 2007, 09:05:34 am
courageous story jeffrey. thank you for sharing it and we look forward to hearing more from you in these forums.

kellyspoppi
Title: Re: Introduce yourself
Post by: DanielMark on August 10, 2007, 05:00:04 pm
Welcome Jeffrey,

Your struggles have been many, but clearly you have learned from them and not let them beat you down.

I admire that!

(http://i90.photobucket.com/albums/k267/deemark/Emoticons/hug.gif)

Daniel
Title: Re: Introduce yourself
Post by: J.R.E. on August 10, 2007, 06:07:38 pm
Hello Jeffrey,

A truly open, honest, and couragious post. Thanks for sharing. You are a survivor !!


All my best-----Ray


Title: Re: Introduce yourself
Post by: JeffreyM on August 11, 2007, 04:02:10 am
Hello  Cindy, kellyspoppi , Daniel , &  Ray - Thank you for your kind words, they are very much appreciated!  I am so very grateful to be alive an mostly well i n 2007. MY best to you all,  Hugs to all!  JeffreyM
Title: Re: Introduce yourself
Post by: mjmel on August 11, 2007, 05:21:09 am
Hi Jeffrey. Wow, what an intense life story. Good lord, I want you for a neighbor and friend. Wonderful outlook--and survival skills. :-*  You crawled inch by inch, at times, to stay here and am glad you are here...........very much alive and throwing off such good energy.
Jeffrey, I have the The Power Of Intention by Wayne Dyer CD set which I have had for a couple of years now. I just started listening to
the recordings early this week. Yes, they sat on the somewhat cluttered bookself and "now" is the time I start listening. Must be ripe for it's message.  ;) So far, love it!
Glad you have joined us here on the forum. Nice to 'meet' you.
xxx,
Mike
Title: Re: Introduce yourself
Post by: dplush on August 11, 2007, 11:16:47 pm
I am David. I have been living with HIV since 1985. Asymptomatic and on truvada and reyataz. I don't take norvir. It is too taxing on my bowels. I was in the preclinical trials in Chicago for ribavirin. Then I was in the clinical trials for AZT. That was a long time ago. My t - cells at their lowest were once 179 in 1986 but since then they have ranged between 500 and 800. They seem to be 500 and up and down in the 500's for a year and then would move up. My HIV issue is the mental health aspect, depression, anxiety, and all that fun stuff. I take some celexa, lorazepam, and ambien. I now live in Phoenix. A much better climate. Ciao!
Title: Re: Introduce yourself
Post by: JeffreyM on August 12, 2007, 04:10:04 am
Hi Mike, I'm glad you dusted of your WD Cd's!  I'm not sure where I would be without the wonderful gifts I have received from the book and the Cd's I  copied from the library (for example just one thing I learned). I stopped thinking and saying I  "wanted" love to come into my life, because Source would keep me in a perpetual state of want. Source only gives us what we ask for.  I starting saying "I am love" - starting thinking I already have it, so therefore I am it. I find love everywhere around me, I find beauty, kindness, too.

Another big change was to stop saying things like "I can't make ends meet this month". well, these words are powerful and I changed a few years ago by replacing this with "all of my needs are met". Little miracles started to happen all around me, things started to change. My life needs were met, I was able to get a new car, new cell phone (that I really needed). A good friend of mine had a family plan and one of her nieces didn't need it anymore, so she added me to her plan and gave me a new phone!

 I feel I am exactly where I was supposed to be.  It has really helped me to release as many negative emotions as possible, regret for instance and I replaced it with affirmations of being creative, well, I'm now drawing with oil pastels on canvas and I have never drawn before. I am careful of every word that I speak, because I truly believe it is creating my future circumstances. Thanks for you very kind response and nice to "meet" you too!  Can't wait to hear how you do once you implement Dr. Dyers philosophy into your life.  JeffreyM

HI dplush, a big welcome to you!  I lived in Phoenix for over twenty years, glad you are enjoying the climate. Take care of yourself!  Jeffrey
Title: Re: Introduce yourself
Post by: gaspode on August 13, 2007, 02:33:19 pm
Hi,
I'm Gary and I live in Brighton, England. Tested positive in 1986, just a few weeks before my 24th birthday. Wondered if I'd make it to 25, and now very happy that I made it to 45!!
In 1998 I qualified as an RN, and from January 1989 til July 1995 I worked in an AIDS in-patient unit (talk about confronting your demons!). In July 1995 I was retired on health grounds and pretty much waited to die, watching my CD4 plummet and my health go pear-shaped. But in late 96 I started on HAART and by July 97 was back working full time. I actually found this process of recovery more difficult - thinking that I'd die was in some ways a relief - and end to the waiting. Getting a life back meany rediscoveting hope, and that was a challenge!
But real hope came in the shape of my current partner - a gorgeous Bralilian who I met just as I was returning to work, and we just very recently celebrated 10 years together. He changed my life completely and helped me to love again.
Unable to live together here in the UK, I went (despite the protests of my family and friends) to love with him in Brazil, and we lived there together until we were able to move to the UK legally in 2002. I now work in palliative/terminal care, although not related to HIV!!
Won't bore you all with my long meds history, but have been through a lot of them and have a horrifying resistance profile. I'm also well aware of whatr it feels like to look like a potato man - big baly and stick limbs and facial wasting. But late last year, with a deteriorating liver function related to meds, I opted to try kaletra monotherapy, and that has been wonderful, and I seem to be getting some shape back!!
At one time I could have reeled out my blood results since the beginning, but now I'm too busy living, and can only tell you that my viral load has been undetectable continuously for the last 6 years (so much for resistance) and my CD4 hs been above 1000 for a long time!
Nice to meet you all  :)
Title: Re: Introduce yourself
Post by: cayucosguy on August 15, 2007, 01:58:19 pm
I guess it's time to tell the whole story here...

Best we can figure out, I seroconverted in the Summer of 1984 while living in Washington, DC.
Actually had no major health problems until October, 1997, when I was in ICU for Viral Meningitis.  I bounced back pretty quickly and returned to work within 3 weeks.
Then, in April of 1999, after returning from a business trip to Las Vegas, I began having difficulty breathing.  Went to my regular doctor who immediately shipped me off to the hospital.  Diagnosed with PCP.  CD4 = 42 @ 3%, VL = 485k.  Began Zerit, Videx, Viracept, Mepron and Bactrim.  Turns out I'm allergic to sulfa-based drugs, so the Bactrim gave me a horrible rash, and had to stop taking it.  Shortly thereafter came the thrush and my first case of shingles (face, neck, scalp & inside my ears!).  Was out of work for four months, had to rely on my local ASO for rent, utilities, food, etc., was encouraged but gave no thought to going out on disability.
I am now on my 8th year of meds (Reyataz, Norvir, Truvada) and still working full time.  The initial combo left me with some neuropathy, but not too bad.  Never had to deal with lipoatrophy, but I'm sure getting a gut on these new meds!
For now, I'm satisfied with my health and my numbers (CD4 = 420 @ 26%, VL = undetectable).
This week I started on Chantix to finally stop smoking, so I'm hoping that will help with my overall health.  I also need to get back on the bicycle and the weights, but without a workout buddy I find it difficult to maintain any type of regular regimen.
Well, that's the story for now.  Looking forward to meeting some of you at AMG '07 next month.
Vince -



Title: Re: Introduce yourself
Post by: gaspode on August 16, 2007, 05:49:11 pm
This week I started on Chantix to finally stop smoking, so I'm hoping that will help with my overall health. 

I stopped smoking on May 10th 2006 - haven't touched a ciggie since. Good luck - worth the struggle!!
Title: Re: Introduce yourself
Post by: buca45 on August 30, 2007, 11:43:44 am
Hello everyone and congratulations on making positive choices in your lives that have allowed us all to age with this condition and now have the distinction of being termed "Long Term Survivors"....I have been callled plenty of things in my life, but of this one I am most proud!!
I have been positive for 16+ years now and have had many, many smaller ailments which thankfully were caught before they progressed to a more serious level.
At present, I am on SSDI due to severe depression, anxiety, psychosis from hiv meds and severe fatigue syndrome that doesnt allow me to hold a regular job as I had since I turned 16.
Alright, you asked for it, so here goes with my condensed story of my life.
I was born in the summer of 1959 on a Indian Reservation in South Dakota to a single mother. No father was present for my childhood. But in true Native American fashion, my maternal grandmother acted as both an 'unchi', or grandmother and also filled the position as a father. At that time, I also had one older brother, 4 years my senior.
Our home consisted of one room, was hand built by my grandfather (who passed soon after constructing it) and was made with logs from the trees he chopped down by hand. The windows were plastic sheeting and the floor was a dirt floor. We had an outhouse some distance away from our home and remember running through both snow drifts and hordes of mosquitoes to do my business!! Our house had no running water or electricity....instead of those luxuries, we had a small stream nearby and a once a month battery which powered our only contact to the outside world, a small AM radio.
From my birth to the time we moved to the "big city", only my native language was spoken in our home. I had no idea that less than 200 miles away there was an entirely different group of people who were nothing like us.
All was fine until I grew enough for my mother and brother to notice my behavior wasn't that of a little boys and although I doubt they knew what gay was at that time, they realized that this is what I was.
This revelation begin what would be a life long series of different types of abuse that made me seriously doubt why exactly I was born to this earth.
We moved, at age 7  to Rapid City where we immediately were enrolled in school. Not knowing English at all, I was just thrown into a group of kids and was expected to figure out how to survive in this new world. This of course, was before the bilingual, multi cultural educational offerings that are available today.
So, here I was, a gay native American boy on his own. Since the secret of my orientation was out amongst my family, they were ashamed of me and offered no help fitting into my new surroundings. Slowly I taught myself the language and some survival skills to fit into my new world. I remember a third grade teacher who seemed to give me extra attention and made me her 'pet', much to the disappointment of my classmates. It was with her help and guidance that I realized I was what the Great Spirit created and was not a freak of nature or something to be ashamed of.
During my year with Mrs. Lyke and her help, I quickly excelled in my school work but because of the inferiority complex which was the result of abuse at home, I remained somewhat a loner throughout my school years. As much as I liked myself, nothing i could do would impress my mother or brother who seemed to have the mission of breaking me down with their endless abuse. I often wonder what they were attempting to accomplish and how family members could be so destructive towards one of their own.
Regardless, I persevered and with the help of a gay friendly aunt who lived in Denver, I was exposed to a world that was new and exciting to me. This aunt persuaded my mother (wasn't too hard to do) to allow me to at first spend summers with her beginning at age 10, then progressed into my living with her full time when i entered high school.
Through her encouragement, I met people (many of her gay friends) and traveled across the country. Each summer, she planned an adventure for us...The Grand Canyon, California, New Mexico, Texas.......and I was exposed to so many great things and people that my severely abusive years seemed to fall out of my mind.
Her main goal was to have me get my education and to see the differences of many cultures and live life through others' eyes. For this, I am eternally grateful and although she passed years ago, I feel her influence in all that I do now.
Again, although I had several gay adult friends of hers as my mentors and friends, I was rejected by gay boys my own age as the separation of Indians and White people continued in SD. I so wanted to be a part of their group, but was thought of (and often called) as a 'dirty Indian' and was never accepted there.
Now in hindsight, the white gay boys (little screamers they were) did me a tremendous favor. By rejecting me, they opened the doors to the older gay men and women who took me under their collective wings and taught me how to survive in our world. With out their influences, I don't think I would be alive today as the abuse suffered from my family combined with the exclusion I felt from my gay peers would have led me to suicide at a young age.
So, here I am now a high school graduate and looking at the rest of my life. Again, my aunts determination to have me educated persuaded me to enter college in Denver where I received the first of two Bachelors Degrees.
Shortly after completing my senior year, I begin my first relationship with a man who was 8 years my senior. He was a wonderful, fun loving man who had the curiosity of a child. Through his eyes, I lived the child's life I wasn't able to live earlier.
He made everything seem new and fun. Together we had a blast together.
Although I received a Business degree, since he was a Waiter at a upscale hotel and made a tremendous amount of money, I followed his lead and did the same. I enjoyed what I did and soon continued my education, this time earning a Restaurant Management Degree.
We moved to several major cities in the country....Dallas, Houston, Atlanta, Miami/Ft. Lauderdale and Chicago before finally buying a home in Orlando.
Although we loved each other, I felt something was missing in my life and I figured out that something was sex with many partners....duh, i had known then what I know now......
Anyway, because of three bouts of childhood molestation at the hands of a Priest, I had some rather severe hangups about sex. Once we agreed to an open relationship 13 years into the game, I went about getting myself over the damage caused by the molestation/rape. I did this by thinking that if I fucked and sucked every man who came along, the scars that were left from my childhood would be eliminated.
Alas, that was not the case, as only a deeper scar was formed when I became HIV positive.
A few months after my conversion, I ended the relationship by forcing my inner rage and hatred of what I did to myself on the man who loved me unconditionally. I abused him both physically and emotionally until one day, I realized that not only had i ruined my life with my promiscuity, but I was also ruining my partners life as well.
Thinking I was alone now to deal with my health issues, I continued to party and F & S any man I wanted. I was fortunate to inherit one good thing from my parents and that was good genes. Through my endless search for sexual fulfillment, I learned that I was highly desired by a lot of men in the gay community and I took advantage of these looks.
As wrong as I knew it was now and then, I continued with a major fuckfest, mowing down partner after partner. Still, every morning as I would kick out the previous night's trick, I would start planning on where I would find my next all too willing victim.
On one of these ventures, I met a man....a very dear sweet man who actually looked me in the eyes and let me know in a matter of seconds who he was and how he knew what I was.
Withing 5 minutes of meeting him, I realized that this man would not be just another sex hookup of mine and i blurted out midsentence....I AM HIV POSITIVE and started to walk away. He followed with our drinks in his hands until I stopped and just stared into my eyes and said...."OK so you are only looking for other poz men or can we just talk and see if we can be friends?"
Five or six hours later, we were still talking on the edge of a lake off of downtown Orlando and he took me to his apartment.
The next day, he gave me a ride home across town and gave me his number. That was all I could think about.....how do i call him and invite him out...what do i say...what if he doesn't want to see me cause I'm poz....call him already!!!!
And I did. That Friday night, I, at 37 years old, had my first REAL date.
Again, we talked until the sun came up and went to sleep in each others arms.
Later that week we met again and since it was Valentines Day, he bought me a card and put his condo key inside the envelope.
As they say, the rest is history.
Through the past ten years, this man has been by my side in health and sometimes those times when I couldn't even mutter the word health.
Everything I would ever want or need this man is there and I am there for him as well. Because of him, I can do as I want, go as I want and feel an intense LOVE no matter what I do.
I plan on spending the rest of my days with him and couldn't even begin to imagine a day with out his love.
So, there it is....a few lines about my self!!!!
Thanks for all who took the three hours to read this mini novel and I hope that I find some new friends here. From what I have read so far, this forum is full of warm, kind and sincere people who, if I am lucky, I will have the pleasure of someday calling my friends.
Take Care all and thanks for reading my story...........

Title: Re: Introduce yourself
Post by: bear60 on August 31, 2007, 11:22:19 am
Hi Buca
Just wanted to say.....that was quite a story!!!! Hope to know you better.
Bear
Title: Re: Introduce yourself
Post by: JeffreyM on September 03, 2007, 09:21:50 am
Hi Buca, Thanks for introducing yourself. I admire your strength.  A big hug to you, JeffreyM
Title: Re: Introduce yourself
Post by: DanielMark on September 03, 2007, 11:01:53 am
Welcome Buca,

I have to tell you some parts of your history mirror my own, especially the alienation by relatives and the abuse/neglect thereof. And for that selfish reason I am a bit teary eyes at the moment.

I came out to my family at age sixteen and was promptly thrown out of the house. If I’d had such a loving and insightful aunt as you did I might not have screwed up my life so severely before I woke up and learned to love myself.

Thank you for reminding me how far I’ve come and what I survived, and welcome aboard again.

Daniel
Title: Re: Introduce yourself
Post by: buca45 on September 03, 2007, 12:32:15 pm
Thank you Bear, Jeffery and Daniel for the welcome!! It makes me feel like part of the community. Also a thank you to those who have PMed me regarding this post.......all messages are very much appreciated!!
Yes Daniel, I consider myself SO fortunate for having my aunt in my life and for her to be so in touch with my unspoken self. Had I not had her influence, I cannot imagine where my life would have gone. 
There is nothing to feel selfish about in feeling emotional about your past. I find myself tearing up at any tv or movie moment, or commercial that shows how some families are close and accepting of each other. Hallmark commercials get to me so bad that i will just turn the channel when one comes on.
I am glad to hear that you, like I, have learned that self love is the best thing to have in your life...congratulations on that revelation.
Title: Re: Introduce yourself
Post by: chefrusty904 on September 16, 2007, 06:00:18 am
Good morning . My name is russell and am living with A.I.D.S. since 1990.
I am in good health. I try to stay happy all the time. A smile on the face goes a LONG WAY.
When I am at my lowest points in life I smile the most. A smile and a joke can move mountains.
Title: Old Hippie Poz Biker & Long Term Survivor
Post by: thedingoman on September 30, 2007, 07:17:48 pm
I'm a 53 soon to be 54 year old long term survivor, infected between 80-82 with tainted ink that was shared from my partner who had HIV when they called it the gay flu.  I got diagnosed in 83 or 84 with the pilot program of I believe what was called the western blot - hell its been so damn long ago I can't remember - maybe I've inhaled too many motorcycle fumes over the years.

I am currently living in Georgia with my former partner Clay.  I travelled frequently over the years and during 2001 - 2006 I travelled 135,000+ miles on my motorcycles after recovering from my first AIDS related illness which took me down in 05-97.

I'm not riding the roads like I use to since I have had a small battle with prostate cancer and kidney disease but am still alive and kicking.

I also want to express how important POZ magazine has been to our community and am very happy that POZ crossed "all barriers" and has become what it has today.  The online POZ site has become a very important element of information and outreach to many of us who have lived with HIV.

I have pesonal web pages that I have maintained over the years and recently have been able to start working on those pages now that I have some time and am not buzzing around the roads as I had been.

I'm also back on the internet after being off for the past couple of years and am glad to see POZ has expanded their services for us!   THANK YOU POZ!

Jim Thurman
www.thedingoman.com/aboutme.html
www.pozrider.com
Title: Re: Introduce yourself
Post by: ybbat67 on October 06, 2007, 05:47:04 pm
I am Warren from Queensland Australia, 40 years young. I have been living with HIV since 1986. I am on Truvada and Kaletra. My  issues are  depression and am on Zoloft. Another is being lonely and growing old alone. Living in a semi rural area doesn't help  i guess but then I am not really a person into the city pub culture.

I am new to this forum.

Thank you for reading :-)
Title: Re: Introduce yourself
Post by: Matty the Damned on October 06, 2007, 05:49:37 pm
Hey Warren!

Welcome to the Forums! Matty the Damned dwells in rural NSW. It's not Queensland but it's isolated enough.

MtD :)
Title: Re: Introduce yourself
Post by: anniebc on October 06, 2007, 06:49:32 pm
Hi Warren

Ex-pat from Perth WA..now living in rural NZ...welcome to the forums hope you stay around and get to know everyone.

Ok you LTS...now you can kick me out... ;)

Hugs
Jan :-*
Title: Re: Introduce yourself
Post by: ybbat67 on October 06, 2007, 11:33:29 pm
Thank you for your warm welcome.

cheers

Warren
Title: Re: Introduce yourself
Post by: bahbayb on October 08, 2007, 01:05:42 pm
Where do i begin? Well, I am now back in Montréal,where I was born,however had been living in San Francisco,since 1976.I came back here to retire,because San Francisco had changed so much since my arrival in 1976.I had lost a lost of friends,and most of the ones left,had already moved or were about to.When I moved in 76 it was because I had met Philip,who became my partner until his premature passing from AIDS in 1985 ,to be precise one week before Rock Hudson's.We both were terribly ill in the summer of 1978,with very high fevers,beginning with me.This is when I suspect and my Doctor agreed that I was infected.I found out i was HIV positive in early 1987.My first TCell count was 620.I was a gardener,and I  can remember being in a large beautiful peaceful garden in Belvedere across from the Golden Gate.The man I was working for Jim was at the other end of the garden and on sunny afternoons I could hear his beeper beeping away,reminding him to take his AZT.Right there and then I said to myself this is not for me,it took me a long time to accept taking medicine.In 1991 i kept looking at a very small purple spot on my left bicep.I knew it was KS having seen so many leasions all over Philip's body before he died next to me.I had it biopsied,and it came back positive.Lucky for me I have not have another on unless some a growing unknowingly inside me.I took my first medecine in 1994.Epivir,Abacavir and Zerit.13 years later i am
now on my second regimen,Viramune,Videx,and Viread.I have had bad bouts of Neuropathy,on and off.My last test last March I was undetectable and my Tcells where at 450.Because I was getting ready to move back to Montreal,in June I could not get an appointment with my Doctor at the VA in San Francisco after the March one.When I arrived here I had to wait 3 months in order to get into the Quebec health system.I had enough pill for a little over 2 months,and the third month was to be mailed by a friend of mine in SF. For some reason the pills never got to me,and I was 8 or 9 days without medication.I began again on Sept.04 when I had my first meeting with my new Doctor here.Blood was drawn,and resistance test were done,and I am to get results on Oct. 16 very soon.I do want to change medication because of the Neuropathy,caused in part by Videx (DDI)I may need help in choosing what will be offered to me on the 16th.
All I can say is that when I first found out I was positive,all I ask for was 3 years,and look how many I got.I will be 67 in March.Another thing I found out since I have been in Montreal,is the cost of my medicine.In San Francisco,I was being seen at the VA.( Yes I am a Veteran in the US.I am still a Canadian,but joined the American Army at 18 in 1959,just because I loved Americans so much,and got a Green Card from my service.)is the true cost of what I take.It gives me a different perspective on things.Viramune $312.00 a month,Viread,$515.00 a month and Videx $211.00 a month,in order to keep me alive.
Title: Re: Introduce yourself
Post by: kennyboi on October 10, 2007, 06:45:36 pm
Hello all!!

My name is Ken and I live just north of Detroit.  I'm 40 and pretty healthy (VL--undetectable 08/31 and CD4 about 400). I've had some recent VL blips and some drops in my CD4's, but I'm bouncing back.   Autumn is in the air after a nice heat wave around here.  I just started a new job (I work in health care) and it looks like it will work pretty well for me.  I also teach surgical technology at a local community college and love doing that.

I've been positive (diagnosed in 2002, probably infected in 1999 after a less than responsible evening).  I was hospitalized a week after my test and diagnosed with PCP.  I climbed back from that and plan on staying strong for a good while yet!!  I'm currently taking Atripla and it is working quite well for me.

I have a wonderful family and excellent friends.  I credit all of my success to them.  Any bad stuff is my own fault.  Actually, some of the success is because I do bust my ass to earn it. 

I strongly encourage any of you who have not been to the mitten state to take a trip north on I-75 during fall to see the most beautiful landscape in the world!!  Stay strong and be proud!!

Peace,

Ken   :D
Title: Re: Introduce yourself
Post by: sureshot02 on October 11, 2007, 04:45:47 pm
Hi Everyone

My name is Don I am 44yrs young..  I have been living with the virus since 1982 ( think I was infected in the late 70's) I too am considered to have AIDS.

In 1990 I was told I had AIDS had a t-cell count of 2 and a VL of over 500,000..  Was told I only had weeks left.. I weight was 66 lbs and I am 5'9"..Her I am 17 years later talking about it to everyone..  I go to the local schools and give speeches on safe sex and living with AIDS..  I feel if I can get to 10 out of 100 kids I have saved someone the heart ache of living with the virus..

I work in health care now taken care of people with disabilities..

Glad to find a new forum and meet new people..

Have a Great Day 
Title: Re: Introduce yourself
Post by: bear60 on October 11, 2007, 05:07:20 pm
Thanks for stopping in Don.  We are all survivors and you have shown a great deal of courage.
Title: Re: Introduce yourself
Post by: sureshot02 on October 18, 2007, 10:34:00 am
Thanks Bear

Went to the doc yesterday.  668 t-cells now and undetectable VL..    ;D   This is the best it has been in over 20 years.  I'm just so happy
Title: Re: Introduce yourself
Post by: sureshot02 on October 18, 2007, 11:04:52 am
Sorry all

My t-cell count is 886 not 668.  Fingers don't want to work this morning..  LOL

Don
Title: Re: Introduce yourself
Post by: PASSIONATEromantic on October 22, 2007, 07:21:05 am
GOoDmornin' to all from the beautiful AUTUMNlandscape of northern indiana...
THANKS to all of you for sharing your stories, wisdom and giving HOPE for "better days ahead"... :)
when I was first diagnosed hiv+ in 1990...my first question to the doctor was "what do I do now?" and her first comment was "I wouldnt make a big investment of buying a car or a home"...needless to say I began my search for a much more compassionate & caring doctor....I have gone thru several TRIALstudies and medicines and continue to be "asymptomatic"....I feel a song comin' on...."IF SHE COULD SEE ME NOW!"

I have recently retired from a passionate thirty three year teaching career  and moved from houston back to my "roots" in a small community in northen indiana and beginning to search for my next career in healthcare...

I feel SO BLESSED each morning when my feet "hit the floor" and I begin my day with a WARMcup of coffee and an INSPIRATIONALsunrise....my HOPE & STRENGTH comes from my lifestyle of "positiveTHINKING"...
no pun intended... :) ... being surrounded by a loving & caring family...being nestled in this WONDERland of motherNATURE...and my SPIRITUALwalk...

this FORUM is just anotherBLESSING along the way... :) ...I am a recent member of this site and it is almost overwhelming to have found so many  caring&sharing people in one "spot"... :)
THANKSagain... to each one of you for sharing your story...
ENJOY this day and all you do....michael
Title: Re: Introduce yourself
Post by: princess1979 on October 25, 2007, 09:28:53 pm
Hello all
Ok, my name is Jessica.  I'm new to this site. Though nowhere close to being new, of living with H.I.V... I am 29 yrs. old, I have been poz, since 1995.. I'm still unsure of how to deal with all of this.  I honeslty ain't even used to introducing myself, as being positive, online or in everyday life. I don't even know to really start, nor where to end. So please excuse me, if my words don't come out right.  I have always been ashamed of my status, & I was only 17 when I found out I was poz, though I was infected, at the young age of 16, due to a rape.  I'm still trying to find away to actually deal with, that I really am sick & it just isn't gonna go away. I know I should be able to deal with being poz after almost 13yrs, but I can't.  My husband whom I've been with for awhile now.. Is also positive, so now I  kinda have someone, whom knows what I'm going through.. But he is a newbie to it for the most part. I think I maybe need friends whom I can get more of an understanding from.. Which in the real world, I have no friends, whom are poz., not that I know of anyways, well except for my husband.. Which I don't wanna sit and talk to him, about our illness, everytime I wanna talk about it.. I just don't think, that's something we as a couple, should really need to talk about. Anyways I'm just looking for some friend, whom I can every talk to, if I ever need to talk. So if you might be looking for someone to just talk to also, please feel free to contact me.  Thanks  GOD bless
Title: Re: Introduce yourself
Post by: SteveA on October 29, 2007, 01:12:38 am
Hi. I'm 44 and I've been POZ since 1987 at least, that was the year long cold that wouldn't go away. I've been on just about every med since then and am on a cocktail that includes Fuseon, Truvada, Norvir and Lexiva these days. I medically retired from American Airlines in 1997 and spend my time these days creating art and animations in 3D. I like to go camping in my RV when I can, but finding a travel companion is hard since I don't go to the bars anymore. Yeah, I'm single and barely looking these days. Just too tired to play the games with guys who don't know the meaning of the word monogamy. Ask me about myself and I'll tell ya more.
Title: Re: Introduce yourself
Post by: lipoenvy on November 03, 2007, 11:27:48 am
Well, here I am - living proof that you don't need a positive attitude to be a long-term survivor of HIV.  I guess HIV has found me to be a congenial host and doesn't want to spoil a good thing.  Or, possibly, life is a dinner table, God is Joan Crawford, and She won't let me leave until I've finished eating all my meat.

I tested positive in 1985, with my best guess for infection date 1982 or very early 1983.  CD4 count slipped below 200 in 1993, qualifying me for an AIDS diagnosis.  Went on disability in 1995.  Working part-time while disabled for the last two years.

Lowest CD4 count was 16.  I flirted with HIV meds until 1996, when we got married, and we've been together ever since, except for a treatment interruption fling in 2005 that gave me SUCH A HEADACHE.  Didn't work out.  The meds took me back without a word of reproach, however.

I have had pneumonia a couple of times, diagnosed once a few days just before a trip to Italy.  I made it to Italy, but I sure noticed all the stairs!  The Vatican is the world's largest Stairmaster!

My body has gotten into a couple of severe disagreements with medications.  Bactrim and I had a big fight during which every muscle in my body decided to contract simultaneously.  My whole body felt like a funny bone that had been hit really hard.  Also this was my first personal experience with appallingly poor emergency room care.  I was somewhat prepared by the appallingly inept care an ex-partner had received several years back.  Don't go to a teaching hospital - they're still learning!

Lipoatrophy set in in earnest after a big disagreement with Crixivan, which decided to give me kidney-stone-like symptoms without a stone ever actually showing up.  I had rapid weight loss and have never really regained it.

This virus has loathsome techniques
For transforming affected physiques:
So much it has cost me,
In three weeks it lost me
Twelve pounds, and all four of my cheeks.

I know twelve pounds doesn't sound like much, but in my case it's a fairly big percentage, and I didn't have any extra to lose.

Tried a course of anabolic steroids to regain the weight - gains were only temporary, and I got to feel like a teenager again.  One side effect - I started growing a right breast!  I had to have a mastectomy!  You haven't lived until you've been a man getting a mammogram at a radiology clinic in Houston.
CLERK:  (calling me up, after I've waited firty-five minutes) Sir, WHAT are you here for?
ME:  (tight whisper)  A mammogram!  Can we put it up in neon?
CLERK:  Well, you're gonna have to fill this form out yourself, 'cause I don't know WHUT to put.
So I fill it out myself.  Am I pregnant?  Not the last time I checked.  Am I on hormone replacement therapy?  Well, I am taking testosterone and nandralone, so I guess yes.
And I'm so skinny that the tiny bit of flesh they manage to get between the glass plates for the mammogram doesn't set off the automatic exposure meter, so they have to EXPERIMENT and run five or six x-rays to get the levels right.  On each side, just for comparison.

More recently, I have developed osteoporosis.  And yet I totter on.  I really want to know if other men on Fosamax find that it gives them ED.  And so began my post-sexual phase.

To all the SFGMC guys who no longer reside on this planet, if you can read the messages in cyberspace, I miss you.


Title: Re: Introduce yourself
Post by: lipoenvy on November 03, 2007, 11:50:49 am
I do want to change medication because of the Neuropathy,caused in part by Videx (DDI) I may need help in choosing what will be offered to me on the 16th.
...the true cost of what I take.It gives me a different perspective on things.Viramune $312.00 a month,Viread,$515.00 a month and Videx $211.00 a month,in order to keep me alive.

Yes, if you're experiencing neuropathy, Videx is the one to eliminate!  And increase your intake of vitamin B-6.  There are so many medications to choose from now that there's no reason to put up with one that is causing problems.

The prices of the medicines are shocking, aren't they?  My new goal in life is to survive until all the damned patents expire and there are generic versions of everything.

Title: Re: Introduce yourself
Post by: brianbrant on November 05, 2007, 04:01:38 pm
I didn't think I would be so excited to connect to this forum.  My registration process was fumbled for awhile and I couldn't figure out what I was doing wrong.  I reregistered again and I hunted and pecked trying to log in until my fingertips were...

It's funny about support, and my on-again/off-again need for isolation and privacy one second, and an absolute desperation to make a different kind of human contact the next.  I didn't need this place... until I absolutely couldn't go on without it. 

In 1990 I tested positive at age 43 and was in poor health.  I had been primary caregiver to a close friend who occupied the first floor of the double we shared and every ounce of energy was depleted during the previous two years caring for him.  My relationship with AIDS (through him) was uncomplicated: diarrhea, blindness and a mean temper.  When I was diagnosed a few months after his death my first mission was to buy lots of underwear and toilet paper.  This was after another fumble within a week of getting the bad news: my very own third-rate suicide attempt. 

The Internet, as a general purpose medium, was just beginning to become accessible with the introduction of Marc Andressen's GUI 'Mosaic,' and I hopped on board around 1991.  With the exception of a chat room on AOL, there were very few spots for HIVers to connect.  I ran into a couple of guys on a general health chat site - one from Montana the other from Texas - and we lamented the lack of support and information available for people impacted by the growing world scourge of AIDS.  After a few weeks of these kinds of exchanges, we decided to launch some spots of our own, managing and manning them in shifts.  Not having the advantage of advanced robotic programs, nor the savvy to understand much of what was available, everything we did was essentially 'live,' in that unless we were on-line, our systems didn't exist.  In addition to our chatrooms, any presence of the crude websites we fumbled together using various servers' free space was inconsistent at best.
 
Our little enterprises became very popular faster than anyone would have guessed.  At that time no one knew how the I'net would explode.  Each month our sites grew by the thousands of percent, statistics we challenged whenever we got them.  Today we take it for granted, but back then it seemed ridiculous.  Through our little network we met people from every country desperate to join one another.  I even got to know the guy who was given a baboon's heart: he typed on a donated PC during his recovery. 

Damn those were some times. 

My most powerful and haunting memory of that era took place on a summer afternoon.  I had been keeping our couple of chat rooms running - no one had shown up for quite awhile and I had a 'fuck this' thing going on in my craw especially because I couldn't even look away from the screen for too long so I could quickly greet people as they entered.  Suddenly the blink of a handle appeared on the empty guest list.  The user identified herself: she was the aunt and only caregiver of a young woman who had been buried just hours before.  No one else entered the chatroom for the rest of the afternoon so she was free to relate the details of her niece's horrible years-long struggle with AIDS.  This woman was broken, empty, exhausted, terrified and utterly without an answer nor even a question.  She just needed.

We spent several hours together.  We wept.  We wept for one another; we wept for our losses and we wept because there was nothing else we could do between keystrokes and the strange language that emerges when you can barely find the letters to form words and thoughts between tears. 

Soon after, I backed off from using the 'Net in any way.  Our local AIDS Service Organization was available, but as I had learned during my I'net years, typical of agencies everywhere.  I won't go into my definition of 'typical' because it agitates me to allow the topic much neural processing, but its value and usefulness in my life has always been frustrating. 

And that's why I'm so happy to be here.  Suddenly nowhere else makes sense.  Sure I have friends.  Even a best, best friend of almost forty years (negative).  And yeah, I'm pretty happy doing my daily stuff - I work out as I have all my adult life so I'm fairly healthy; I'm a journal keeper and I paint - pleasures both.  And nearly two decades have gone by without anything terrible messing up my life. 

But so much time has passed since my early years meeting complete strangers who became wonderful, supportive and genuine friends - connected through copper wire and a glowing CRT, something has been - for want of a better way of expressing it - "calling me."  I don't know why.  I don't know why now.

About to turn 61 within a matter of days and not quite sure of anything beyond the facts of my status, my numbers and my memories, I simply gotta be here.  And knowing how completely incompetent I've become at the simple task of username and password entry, I may never find my way back onto this forum.  So this may be the only chance I get to express my gratitude that this place exists at all, that I've found it and am typing away happily for the first time in so many years.  I'm finding the keys, typing the words, seeing through the...
Title: Introduce yourself
Post by: achim-martin on January 24, 2008, 09:34:48 am
Hi everybody,
my name is Gilbert, am the lifetimepartner of my lover. Since he's not so well with the english language and we're germans I decided to just write for him. He's positive but we've gone through it all together anyhow...

Being 33 in 1996 he got the message along with some hep A. His figures were still normal, except for the virus counts of 30.000. Devistation and all that, well the normal reactions. Since he had this hepatitis and there were only those two meds regiments out at that time in Europe we decided not to do anyhting related to HAART. He just took hypericine for a year - some herb that was supposed to be supportive.
Then in 1997, after triple therapy was available and he had recovered from the hep A completely we decided to start HAART therapy. Ever since he's basically on the same meds. Sustiva and combivir. His viral loads dropped within three months below 10 and stayed down there ever since.
From 1999 and 2000 he additionally did some Interleukin II therapy. (4,5 Mio for 5 days), four times during that period. This boosted his CD4 counts to over a thousand, lowered the CD8 counts, and the ratio remains at around 1.35 to 1.4 since that time. Also, he got tested in 2001 not only for viral counts but also for those hidden virus residues in CD4 cells - forgot the name of that test. Well, they tested over a million cells and nothing was found.
Overall, he's always been healthy, no infections, no lipo probs (gosh even his cholesterol is below 170 without doing anyhting specific, I have to take pills but he's just fine...)

So now for more than 10 years he's below detection, hidden viruses have not been found - his entire body system should have changed by now. He or should I say we both were so fortunate to be lucky enough to have no problems with this desease - except for the first two years, with all that fear and short life expectations etc.

This year he's supposed to change to this triple pill, which will be available in summer in Europe.

Our question now is simply:  are there any long term survivors of those interleukin II studies plus/including HAART therpapies that experienced the same?
Perfect figures for 10 years, still taking medicine?  Any guys around that stopped the medicine at some point and after some years still below detection?
We couldn't find new studies with people who stopped, except those patients that stop and start and stop every year or so - which were not successfull as a result.
Title: Re: Introduce yourself
Post by: bear60 on January 24, 2008, 12:02:39 pm
Hello
I just wanted to say Hi and say that your story is quite wonderful.. You both have gone through a lot.  I hope you will find some support here.  Tell us about yourself, too.
Title: Re: Introduce yourself
Post by: BT65 on January 24, 2008, 01:01:38 pm
Hi Achim, I don't have any experience with the Interleukin, but I just wanted to welcome you both to the forums.  Please keep in touch with us! :-*
Title: Introduce yourself
Post by: achim-martin on January 24, 2008, 03:05:07 pm
Thanx guys, we appreciate your warm welcome!
Yes, there were troubled times, but needless to say we're humble
enough to keep it down when learning more about so many others
that may not have been so fortunate. It's a miracle to me that so
many people have survived and doing rather fine now.

Regarding that IL II, I can just strongly recommend it to give it a try
and even if no government insurance pays for it, its the best investment
one can do for the future. In France and some other countries they
even accept it as an official HIV treatment.  And now it would be interesting
to find out about long term users. Just like with some of those other threads
here where they were wondering whatever happened to those herbs
that seemed to work so well.  Hope we can exchange some more in the
future.

About our life I can only say that we live in the Canaries / Spain and have
an internet business. More I cannot tell, cause some people would recognize
us and that would not be so recommandable..., sorry.

If someone wants to contact us directly you may freely do to:  928773446@telefonica.net
Title: Re: Introduce yourself
Post by: hottop101 on February 08, 2008, 03:03:01 pm
Hi all !

Richard here.  I am 54 years old, 55 next month!

Was diagnosed in1985, long-term non-progressor until 1996 when PCP wreaked havoc with me.

Started on meds in 1996, cd4 40, VL as I recall over 500,000.

Since 2000, my cd4 has stabilized in the 180 to 300 range, and my VL undetectable to 50,000.

I worked in healthcare as a Respiratory Care Practitioner until 1996, when my doctor advised I should "retire".

I have been on SSDI and private LT Disability since 1997.  I was a fortunate one, getting my SS approval

3 months after my FIRST attempt. 

I have a partner of 22 years!  Also POZ, and a wonderful man.  Having someone to share this journey with,

who not only loves you but understands the ups and DOWNS, is a blessing!

We have homes in Delaware and Florida (St Petersburg)...I try to spend most of the winter in Florida (surprise!).

My major problem at this point of the journey, is that every time I have to change meds, I go through long lasting

side effects, and my meds for depression usually get a dose bump <G>.

Just joined the community, wish I had earlier!!

Best to all....
Richard

PS.  Have 4 dogs!  My children!
   

 
Title: Re: Introduce yourself
Post by: achim-martin on February 08, 2008, 03:25:30 pm
Welcome buddy!
You'll soon find out, here are people of all sorts and at all stages of the illness. Hope you'll find something positive and even helpful for you guys! Good luck and a sunny weekend... :)
Title: Re: Introduce yourself
Post by: Snowangel on February 08, 2008, 10:42:25 pm
Hi Everyone,
I have been taking meds since 94.  I made the mistake of asking for status but not for proof and then not having him wear a condom.  Since joining this site I have realized I have blocked out a lot of what happened at that time in my life.  I did not start dating until senior year in high school and I am an only child so to say I was sheltered and niave is an understatement.  My parents had divorced by the time I met this guy and my father didn't want to "complicate" things so he stopped talking to me too.  The relationship I was in was based on lies on his part and when they started coming out is when he started with the abuse.  My father had only raised his voice once when I was growing up, so when someone I trusted started raising his hands and his voice to me, I didn't have a clue what to do, didn't know who to tell so I just pretended everything was alright.  I focused and excelled at my job and in the meantime he went to jail for 4 years.  I stayed with him for fear of him telling my job and my mother of my status.  He had gotten tested in jail and I thought that was when he first found out but I found out later that he had known before I met him.  He promised me he was getting help in jail, anger management, AA, NA, whatever they offered and we were going to get through this together.  I made the mistake of telling him the one thing I regretted was that I couldn't have kids so he slipped off the condom when he was on pre-release.  I still can't believe the shit I used do for this asshole.  But anyway....I got involved in a Womens and transmission program and was closely monitored during and after pregnancy.(He's negative)  He got paroled before the baby was born and went back in when he was a month or two.  I had forgotten this but....In high school I had become friends with my first bf, brothers girlfriend.  Got it?  Well, she had her baby boy around the same time I had mine.  I went over to visit and still had a bruise on my face from the telephone he hit me in the head with.  Her husband is a cop.  This pissed him off.  He called his buddies at the jail.  They found out that he was positive.  The next day, I get the call.    You know he is positive, right?  You know he had girl after girl coming up to visit, right.  Yes, no.  It actually turned out to be a blessing in disguise.  Because her husband had made some call about his record or something, it automatically calls his parole officer and he came to visit.  He saw my face, I told him what was going on and off to jail he went. When my lease was up, I told my Mom my status and what had happened with the father and moved back in with her.  You'd think I would be done with chapter but no.  I am a certifiable idiot.  He came to me with I need to know my son, I am so sorry I have hurt you, blah, blah.  I tried. He didn't change. One night, I saw fear in my sons eyes and he told me he didn't give a fuck and I went and got a my first restraining order.  After while I got smart and realized it didn't matter that he owed me over $25,000, that everything in the apartment was mine, nothing was ever going to change. I had my son, my health, my job, that was all I needed.   I rented a car for him to go to the beach one day and when he got back my son and I were gone.  I struggle now because I have to see him every other weekend but I try real hard for my son to make everything look halfway normal.  Unfortunately, his father has already shown him what type of person he is so it is only a matter of time before the questions start coming.
After moving out, I moved back with my mother, kept working and eventually bought a condo for my son and I.   The company I was working for ended up closing in 01 or 02 and at the sametime I was going to court with my sons father regarding custody.  That is when I got the aids diagnosis. 
 I met my fiance on-line in 99.  Things were off and on with him until I bought this house in 04.  We had boy-girl-boy trip  lets in 03.  They were premature at 25 wks but negative.  They stayed in the NICU for 6 weeks and did really well. 
I couldn't tell you what meds I have taken before. I had the Videx chewables those were absolutely disgusting.  I am on Truvada, Norvir, and Reyataz now, once a day, YEEHAH!!  I am undetectable now.  All my kids were on AZT and didn't have any problems.  I got on disability in 03.  I recently started volunteering.  I have a appt on Monday for a case manager,  I have a deep need to talk to someone so I am hoping they can hook me up.  I am usually a very upbeat and happy go lucky person but I have been miserable lately.  My sense of humor has definately been working overtime to keep me out of a funk.  I am so glad to have found this site!  Thanks to everyone for all the great info, the straight forwardness, the humor!
Snow
Title: Re: Introduce yourself
Post by: kerryglenalley on February 15, 2008, 01:29:56 pm
 Hi Friends,
         My name is Kerry and I live in Van Buren, Arkansas.   I found out I was positive 4 years ago and have only met 2 other people who are positive.   Although I'm in very good health according to my labs I had a pulmonary embolism this past summer which I am fortunate to have lived through;  I suffer from peripheral neurapathy as a result of my seizure.   Has anybody else had a similar experience with PN?   Have you had any successful treatments? 
   I wish I had someone who could quell my fears concerning AIDS/HIV.

Sincerely,
kerry
Title: Re: Introduce yourself
Post by: asaint on February 15, 2008, 03:05:04 pm
   I wish I had someone who could quell my fears concerning AIDS/HIV.

I'm no expert but what I can tell you is this
I'm POZ since 1984 and still sucking air.
You too can and will live as long or longer as I. just keep a eye out for things that don't feel right a see a doctor often.
its really no big deal, I see people I know who aren't HIV+ and are sicker then I am. Its all about how you take care of yourself.
Hope this helps a little

Bob
Title: Re: Introduce yourself
Post by: g-man61265 on February 15, 2008, 05:39:00 pm
[i think you sound terriffic! i'm also 48, and have been poz now for 9 years. i live in moline,il., and, even though i don't have a partener, i do have a supportive family, and some great and supportive friends. i'm also a clent rep. for the consortia here, and have met many new people. this is my first post, so, i lost my virginity again!
Title: Re: Introduce yourself I'm Mark S. A 25yr. survivor
Post by: Brizzbe-VI on April 14, 2008, 09:53:05 am
Hey Everyone;

           My name is Mark S. from Atlanta, GA. and I am a 25 year survivor of HIV/AIDS got the full blown in 2003, I also am the Chairperson of a group called LONG TERM SURVIVORS of GA. plus the added Team Captain for the AIDS Walk Atlanta. Now I know that I have lived so long for a reason, but I can't put my finger on why ? I have many questions about the long term affect of the medications and my body, and most of the Drug Companies that sponsor our group from time to time can't answer the questions. I am always open for any discusion about this matter and I am always open for any email on the subject. I can be reached at either frenchknife@AOL.com or brizzbe_vi@bellsouth.net, I know that there many answers to this question so pleasefeel free to contact me and lets talk.

                                                                  Mark S.
Title: Re: Introduce yourself
Post by: BT65 on April 14, 2008, 06:48:25 pm
Mark, welcome to the forums.
Title: Re: Introduce yourself
Post by: J.R.E. on April 15, 2008, 08:32:08 am


Hello Mark. Welcome to the forums.  I know I've missed a few others also, so I'de just like to say hello to those that have introduced themselves in this thread !! It's hard to keep up !


Ray
Title: Re: Introduce yourself
Post by: OzPaul on April 15, 2008, 09:37:27 am
Hi Mark

Welcome to the Forums !

We're a pretty friendly global group of people here. I'll look forward to reading more posts from you.

Cheers
Paul
Title: Re: Introduce yourself
Post by: pozhealthy on April 15, 2008, 11:46:43 pm
HI. I have been poz since 1991. Found out while in my second year of Dental school and was essentially forced out of the program.  You may remember a story about a  dentist ( Dr. Acer who infected a patient, Kimberly Bergalis who died)/ Well it was like mass hysteria. I was also working in a hospital at the time and remember wearing decontamination gear to go into peoples rooms. It was just silly. Saw lots of friends and people die and thought I was going to as well. Student loans came due and i just laughed. Then I did not die. Student loans are still due and they started taking my paycheck. So here I am still alive. Paying over $700 per month on about $100000 in loans that i can never pay back. The payment I can make does not even cover the interest--so my loan acutally goes UP every month. I spend about $500 on meds. This leaves me with virtually nothing to live on. Am i bitter? Of course. LOL
But I am alive and working full time plus 20 hours overtime each week and this keeps me busy. I have a young niece and nephew that are keeping me going. Life could be worse.
I live outside Philly--so if you are in the area and would like to hang out, hit me up. I love to cook, movies, museums,camp, just hang out, bike, hike,kayak, stuff like that.
Title: Re: Introduce yourself
Post by: BT65 on April 16, 2008, 10:18:36 am
Poz, welcome to the forums.

Just a bit of advice.....if you acquired these student loans before you tested HIV+, they can be forgiven.  I know from personal experience, because I had some before I tested poz and they were all forgiven.  What I had to do was to get forms from the institutions that had the loans and have my doctor fill them out; then they were faxed back to the places who had the loans.  Just a thought.  It would give you at least money to live on. ;)
Title: Re: Introduce yourself
Post by: MarcoPoz on April 23, 2008, 01:33:33 pm
Diagnosed in 1991 in the military.  Thought I was dying and going to have everyone I love--leave me.  Had the same drama/blah-blah that some others have gone through.

Now--I've been married since 1992, my wife is STILL HIV negative.  We both work in HIV.  For the most part I'm in a passionate love affair with life.

Could be I'm an optimist--could be that I'm totally buzzed from my Cracker-Jack snack I just ate.  MMMM s u g a r.

-Peace
Title: Re: Introduce yourself
Post by: BT65 on April 23, 2008, 01:59:42 pm
Marco,

Welcome to the forums.  Glad that you found us and I hope we can offer support.
   Luv,
Betty
Title: Re: Introduce yourself
Post by: Bob Mac on May 01, 2008, 09:41:54 am
Hi everyone.  My name is Bob.  I tested positive in 1990.  I've been on lots of meds, had lots of things happen.  I've been reading these posts and am very impressed with the information, admissions and similarities of situations given here.  I plan on continuing to read and speak here as often as i can.  My t-cells landed at 10 for a year and a half back in 95.  I'd been on AZT for 5 years at that point.  I continued taking AZT for a LONG time.  I've had several drug changes, some because I didn't like the side effects, others because they didn't seem to work.  I advanced to AIDS in 1995 after having a cyst erupt between the lobes of my brain (not HIV related) for which I ended up comatose and rushed into surgery.  I lost 35 pounds, had some other relative (HIV) stuff so was put into a clinic and on trial stuff (I don't remember what it was).  In 97 I was diagnosed with lung cancer.  Yep, I had to give up smoking!  One vice I still miss!  But, I've been living with one lung for almost 11 years now, and my pulmonologist thinks I'm some sort of miracle.  When he first diagnosed me, he told me that having AIDS, no insurance, he'd have difficulty convincing a doc that I was worth the effort.  The thought was that they couldn't tell me that I could live for 10 years with AIDS, nor could they tell me that I could survive with one lung, and then the combination, well!  Needless to say, we found one.  I survived and my pulmonologist (after 5 years - cured) released me with a huge smile and disbelief.  Since then, I've had two hospitalizations, one for a bacteria in my kidney, and one for cepsis (sepsis? - sp?) some kind of blood infection and diagnosed as diabetic.  I'm thankfully able to control the diabetes still, with my diet (yeah, the only pleasure in life, and i have to watch it?!LOL) so knowingly I do take glyburide when my numbers are too high for too long!  Other than those things, I have to admit, my life too, is filled with volunteer work that I really enjoy!  I don't do much other.  I am working on my social calendar.  I'm trying to find and fill it with things that I like.  Being busy certainly helps the blues.  I'm sure many of us (HIV +and-)  know that state!  Oh yeah, depression got to me so bad, I've even had ECT!  Electro Convulsive Therapy.  They induce an epileptic seizure, controlled.  This stimulates a part of the brain that they think is responsible for depression.  I've had 15 or 16 treatments.  I'm not planning another for awhile.  I hope I can maintain my current (o.k. and progressing) situation.  I think that's enough for now.  I hope I'm posting this correctly.  See you in the forums!  Bob
Title: Re: Introduce yourself
Post by: rondrond on May 01, 2008, 10:04:58 am
Hey, Bob, Welcome survivor.  Look forward to reading you in the forums.
ronnie
Title: Re: Introduce yourself
Post by: BT65 on May 01, 2008, 01:42:36 pm
Hi Bob, and welcome.  You and I have some similarities.  I had sepsis that left me comatose.  In the coma, the feeding they were giving me through a tube had a high sugar content in it, caused my pancreas to fail and I'm diabetic as a result.    You've survived some amazing things, that's for sure.

Anyway, I hope to hear more from you!
  Luv,
Betty
Title: Re: Introduce yourself
Post by: kayakinteddy on May 15, 2008, 03:48:09 pm
Hi all...

I appreciate each of you taking the time to write.  After 13 years of living with HIV, the feeling of being out of step with the world around me is perhaps the hardest thing.   In 2000 I stopped working as a Ryan White Case Manager  Losing 3 clients in as many months coupled with an AIDS diagnosis sent me out on disability.  Since then, I don't come across another person living with this virus in my daily life.

Oddly the time off and the painful amount of time to focus on myself turned my life around.  I think my HIV infection was directly linked to my lack of investment in my own well being.  I grew up in a crazy family with alcoholism and physical abuse.  Craziness and being mistreated were familiar experiences.  I tended to gravitate toward relationships that repeated elements of what had been familiar to me.  In 1991, I got sober at 23- but that was only the beginning of healing.  All my life I struggled around gender.  Despite being born female, I knew inside that being a boy made more sense.  Numbing out with alcohol and in crazy reationships were a way of pushing my extreme discomfort out of my consciousness.

By 2002, I was in trouble.  My t-cells were 33, viral load in the millions.  I felt tired all the time.  Getting shingles was perhaps the most painful affliction known to human kind.  Faced with a physical downslide I couldn't stop.  I couldn't tolerate most medication due to the side effects and on some level just couldn't muster the resources to give a damn.  Then it hit me- if I was going to die of this disease- I damn well wasn't going out as a girl!

In Oct 2002 I started gender transition from female to male.  Now I live as a regular guy- albeit a short, but furry one.   ;D  What I never expected was the positive affect transitioing would have on my health.  All of a sudden I cared if I lived or died.  Slowly I have climbed back.  I found meds that worked to fully supress my virus and my t-cells are peaking out from under the furniture.  Still tired, nagged by sinus/ear/chest infections- but otherwise having a ball!  I am like a little boy at Christmas much of the time.

Now I am moving toward becoming a yoga teacher.  Part of what helps me show up every day is a deep sense of spiritual connectedness.  I am here for a purpose and plan on hanging around to be of service.  The virus is what it is.  Living with a catastrophic illness since the age of 28 has often been more than I thought I could bear.  For today, I show up and am grateful.  Somewhere in gender transition, I developed into Peter Pan.   ;)

warm regards,
teo



Title: Re: Introduce yourself
Post by: BT65 on May 15, 2008, 11:07:29 pm
Teo, welcome to the forums.  I'm glad things are going well for you and I hope to hear more.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: Peter Staley on May 16, 2008, 10:55:57 am
Teo -- what an amazing story.  I'm glad you found our forums!

Peter Staley
Founder
AIDSmeds.com
Title: Re: Introduce yourself
Post by: WiltedRose on May 28, 2008, 07:55:50 pm
STATS Now: April '08-CD4-260/VL 6600/%12.4 FROM: Nov. '07- CD4-440/VL 6000/%20.0

Hello!  I'm new here and my name is Rosalyn and I was diagnosed 1 month after my fiance died of AIDS 12/1999.  The men on the down-low are REAL.  He was one and the second man I had ever been with. The 1st man I was with used condoms.  I wasn't shocked when I found out but I was hurt.  I believe I contracted the infection from him in 1995 and I remember having "the flu".  I had never been so sick in my life and weak!  Now I know that it was not the flu.

I've been on a drug vacation since the summer of 2002.  I had a great doctor who had a practice that dealt with HIV+ and AIDS patients.  He was into trying new things based on his clinical experience with patients and the research that was available at the time.  He wanted to see if I could go without meds(due to some side effects & toxicity issues that I started having) and see how long my body could maintain my viral load and CD4.  Well it is only today that my doctor, another doctor, has decided to put me back on meds (possibly) because my CD4 dropped to 260 from a previous reading of 440.  She is willing to retest to see if my CD4 has rebounded but she's not expecting that it has.  So, here I go, back on meds.  It's been a great vacation!   Extreme stress is what I will fault for the need for meds now.  I'm hoping that my CD4 is better though.

Anyway, my spouse is also HIV+ and we have been married for 2 1/2 years.  I'm very glad that I stumbled across this website!  I've been struggling with lots of issues including the loss of my job April 24, marital problems, health issues for my husband, financial problems, and intimacy problems.  Believe it or not, things are actually not all that bad.  In fact my life is where I wanted it to be minus being unemployed.  As has been said before: It was the best of times and the worst of times.  That's where I'm at now. 

It warmed my heart to see the women's section and how you all share so many things and also the fact that you seem to try not to judge too harshly.  I've been needing someone to "talk" to and my husband has not been up for it.  I see that this will be an excellent way to get support, advice, reassurance, hope, guidance and laughs.  I'm very glad to be here and I have lots more to share.  As you see more details of my story I ask that you be gentle and not think too poorly of me.  I've sabotaged so much of my own efforts that I'm amazed that my life is not more screwed up.  The point is, no one can let me have it like I can, and I know ALL of the details. 

Looking forward to interacting with you all.  :)
Title: Re: Introduce yourself
Post by: Winiroo on May 28, 2008, 08:46:55 pm
Hi WiltedRose. Welcome to AIDSmeds.

Feel free to join us ladies. We are currently chit chatting at this thread http://forums.poz.com/index.php?topic=21101.msg270532#msg270532 (http://forums.poz.com/index.php?topic=21101.msg270532#msg270532)

I know it says dating thread but its just ladies talking.
Title: Re: Introduce yourself
Post by: Jeff G on May 28, 2008, 09:24:23 pm
Welcome Rosalyn .
Title: Re: Introduce yourself
Post by: BT65 on May 29, 2008, 08:23:37 am
Welcome, Rosalyn.  Yes, please join us ladies on that link Winiroo provided.  Don't worry, I've done plenty in my life, a lot of which is known here.  And no one threw me into the lake of fire.  Hope to hear more.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: Peter Staley on May 29, 2008, 05:32:23 pm
Welcome, Rosalyn.  Glad you found us!  I'm looking forward to getting to know you online.

Peter Staley
Founder
AIDSmeds.com
Title: Re: Introduce yourself
Post by: poodlelover on June 05, 2008, 03:56:31 pm
I'm Connie, Been positive for 21 years.  Have 3 grown kids all in college, 2 toy poodles.  Grew up in biloxi, MS been in Houston for 4 years.

at time of diagnosis tcells were 140, vl 115,00
now,  tcells 754 vl undectable.
Title: Re: Introduce yourself
Post by: Winiroo on June 05, 2008, 04:36:09 pm
Good to see you Connie. Welcome to AIDSmeds.
Title: Re: Introduce yourself
Post by: BT65 on June 05, 2008, 09:54:54 pm
Hi Connie, welcome to the forums.  Please join us women in the "positive women" part of the forum.  Especially the dating thread.  It's not all about dating; it's where we ladies talk every day about our troubles, give each other support, and just gab.   We're really a great bunch of ladies.

Again, welcome.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: Peter Staley on June 06, 2008, 10:29:20 am
Welcome, Connie!

Peter Staley
Founder
AIDSmeds.com
Title: Re: Introduce yourself
Post by: OzPaul on June 06, 2008, 10:38:07 am
Hi Connie

Welcome to the Forums  ;D

I'll look forward to reading more about you.

Cheers,
Paul
Title: Re: Introduce yourself
Post by: J.R.E. on June 08, 2008, 05:22:48 am

Hello Richard, Connie and Rosalyn. Welcome !!! Richard, I believe I responded to you before, but once again welcome  !!

Ray 8)
Title: Re: Introduce yourself
Post by: somdamon on June 08, 2008, 03:00:01 pm
Greetings Everyone!

My name is Damon and I have been positive since 1987. I am 45 years of age and live in Marietta, GA (Atlanta suburbs). I am currently in school studying graphic design with the intent of returning to work in the not to distant future.

I am originally from Norfolk, VA - grew up in the Washington D.C. area and moved to Georgia in 1987. I hold a strong interest in graphic design, music, food, Cher, CNN, Spirituality, comedy, did I mention Cher?, and living a peaceful life. I am very happy to have found this forum and look forward to sharing information and experiences.

So very happy that summer is here at last!

Damon


[attachment deleted by admin]
Title: Re: Introduce yourself
Post by: BT65 on June 08, 2008, 04:56:16 pm
Hi Damon, and welcome to the forums.  I hope you find the support you need here; and I'm sure you will.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: Peter Staley on June 08, 2008, 05:13:57 pm
Damon -- glad you found us!  Welcome to our forums.  It's always nice to have another long-term survivor join our ranks.

Peter Staley
Founder
AIDSmeds.com
Title: Re: Introduce yourself
Post by: somdamon on June 08, 2008, 05:21:08 pm
Thank you Betty and Peter for the warm welcome.

Damon
Title: Re: Introduce yourself
Post by: OzPaul on June 08, 2008, 06:35:04 pm
Hi Damon

Welcome to the Forums !  It's always great to have another long term survivor among our global family  :D

I'll look forward to hearing more about you.

Cheers
Paul
Title: Re: Introduce yourself
Post by: somdamon on June 08, 2008, 06:58:17 pm
 ;DThanks for the welcome Paul!

It's really cool making history isn't it?! Long live the long term survivors!!

Damon
Title: Re: Introduce yourself
Post by: J.R.E. on June 08, 2008, 07:39:24 pm


Hello Damon.  Welcome to the site, will be looking forward to hearing more from you.


All the best-----Ray
Title: Re: Introduce yourself
Post by: Winiroo on June 08, 2008, 07:54:08 pm
Welcome to AIDSmeds Damon.

Great name. Its one of my kids middle names. Hope you enjoy the site.
Title: Re: Introduce yourself
Post by: somdamon on June 08, 2008, 09:11:21 pm
Hi Wendy and Ray!

Thanks for the welcome.

Damon
Title: Re: Introduce yourself
Post by: bear60 on June 28, 2008, 03:43:58 pm
Hello Mr. Leatherbloke.....
Welcome to this forum and welcome to being a LONG TIME SUVIVOR. 

"It is time, before I am 35, to prepare my will, and it worries me," quote you.
Having a will and making arrangements for your death should be a source of reassurance that this is one less thing that will put stress on you.  Do it.... put it away..... and move on. Right?  If your life changes you can always change your will.
Hope to hear more from you!

Joel
Title: Re: Introduce yourself
Post by: BT65 on June 28, 2008, 09:00:00 pm
Lthrbloke, welcome to the forums.

I was diagnosed 19 years ago, when I was 24.  I was told to "get my arrangements in order."  And I did.  And I almost died a couple times (I'm talking about my heart not beating anymore).  But, I lived.  And now, I'm completing a bachelor's degree in psych.  I do understand your frustration.  I only have very few select friends I talk to about things that go on with me.  I have one special friend who has seen me through all the hardships I've gone through almost since my diagnosis.  So, having only a couple friends is alright.  Just be happy you have them.

My parents both died within 7 months of each other.  My mum died last August and my father died this March.  It is extremely hard to lose a parent; I know.  I don't know what happens to people after they die; no one's ever come back to tell me.  But, I know they're not suffering anymore, and that gives me peace of mind (which of course takes awhile to get after their death). 

I would encourage you to talk to a professional.  Now, don't get all upset; I see one myself.  I've had the same counselor since 1991 and he's invaluable.  It might help relieve a lot of your anxiety to actually be able to sit face-to-face and talk to someone who's professionally trained to deal with emotional difficulty.  Of course, we're always here.  Again, I welcome you and I hope you stick around with us. :)
   Luv,
Betty
Title: Re: Introduce yourself
Post by: BT65 on June 29, 2008, 09:51:36 am
Betty, I do actually visit a professional, but despite the thousand discussions we have and the things he tells me, I think I just wanted to share in this forum my humble opinion with people who might have gone through a similar process in their lives.

Wish you the best.


I was not discouraging you from speaking up here, please don't take it as that.  I'm glad you've found us and like I said before, I hope you stay with us.
Title: Re: Introduce yourself
Post by: miro on October 16, 2008, 07:59:26 pm
Hi All,
My name is Miro. This is my first post. Nice to see you. Now I live in the UK but I was born and used to live in Poland. I am still working and wake up every day. At now I am thinking about stop HAART but my doctor advises me against it .
Diagnosed Jun 1991 HIV + HEP C
Meds  2000 (CD4 500 VL ?). Now: Reyataz+Kivexa+Norvir+Tenofovir
Cure HEP C in 2002
CD4 around 1100
VL Undetectable sometimes around 100,
Title: Re: Introduce yourself
Post by: lipoenvy on October 17, 2008, 02:46:54 pm
I tested positive in 1985, probably seroconverted in 1982 or 1983, had a precipitous decline in my T-cell count which led to an AIDS diagnosis in 1993, went on disability in 1995, and had my kidneys run over by Crixivan in 1999 which was followed by big-time onset of lipoatrophy.

Flirted with going back to work but found I was not up for full-time, opted for part-time.  Work and I remain friends and see other people.

I gave up mind-altering substances after the cats got into the hash brownies and started taking off from the floor like helicopters, landing, and tearing around the apartment, then crashed for two days.  Now instead I watch MST3K versions of social engineering films on YouTube. The effect is pretty close. ("Young Man's Fancy" is a classic.)

At my recent screening/screaming colonoscopy, the doctor said that I had a perfect colon.  "Call Guinness!" I cried.


Title: Re: Introduce yourself
Post by: BT65 on October 17, 2008, 06:33:10 pm
Welcome, Miro.  Hope to hear more from you.

Lipo, that was cute, thanks. :D
Title: Re: Introduce yourself
Post by: miro on October 17, 2008, 07:22:11 pm
Hi
I have a son 5 years old. Previous I have not a problem with any infection. Only HEP C which was cure in 2002. But now my mental health is crashed because I am afraid about future. I am working as IT specialist. I think that started treatment early is good ( I started when I have 500 CD4) but at now every day i think to stop HAART. Has somebody done it (stop HAART and come back to the same med?

Title: Re: Introduce yourself
Post by: BT65 on October 17, 2008, 08:20:18 pm
Miro, I took a break from HAART last year and my T-cells went from 600+ down to 300 and my viral load went from undetectable to over 300,000.  I don't believe treatment breaks are recommended. 
Title: Re: Introduce yourself
Post by: XGoodBuddyX on October 18, 2008, 12:52:43 am
i really need to talk to someone;
Title: Re: Introduce yourself
Post by: MYSTERY on October 18, 2008, 01:37:09 am
xXgoodbuddyXX,

You can private message me if you need someone to talk too.
Title: Re: Introduce yourself
Post by: BT65 on October 18, 2008, 02:12:40 pm
Myster, GoodBuddy cannot pm someone until s/he has 3 posts. 
Title: Re: Introduce yourself
Post by: Afreerangelife on November 19, 2008, 03:43:49 pm
Hi I am new here, just joined up.

I was diagnosed when I was 22, I am now 48. Both my partner of the time and myself were forced to have an HIV test as we were a same sex couple applying for a join life insurance when purchasing a house together.

After a week trying to find somewhere to get the test, we were told to go to our local hospital. When we told the people taking our blood that we were having (at that time it was called an AIDS test) the tests for, they refused to take our blood as they thought they would become infected by touching us.

In the end in full rubber and face-masked one of them took our blood. About a week later our GP phoned us to tell us the results were back but they would not tell him what they were as we did not have any counseling before the test. We then had to go back to the hospital and saw an ID doctor who talked to us about the test and they went on to tell us the we were both infected.

We were told that there was nothing they could do for us and that we would be dead within 2 years. She also to us not to tell anyone else as we would be run out of town.

Long story short, my partner died about 2 years later. I am still here, never had an HIV related illness. Have had a CD around 200 for the past god know how many years.

I have been on and off treatment for about 7 years. I hate taking them they make me ill, I have side effects all the time. Before I took them I was well and healthy, my HIV did not effect me at all.

I live in the UK with my negative partner of nearly 5 years. I work for an HIV charity.

I am looking forward to finding out more about this site. I use to be a member of PLM but have recently left the site as I did not feel that I could get the support there that I needed.

Its good to see a whole section on here for Long Term Survivors. Please feel free to drop me a line, I don't bite .... lol  ;D

Afreerangelife

Title: Re: Introduce yourself
Post by: BT65 on November 19, 2008, 09:17:19 pm
Hey Freerange,

Welcome!  It's always good to know another LTS, even if it's just here on the computer.  I hope to hear more from you.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: Winiroo on November 19, 2008, 09:38:05 pm
Welcome to AIDSmeds Afreerangelife. 
(http://i188.photobucket.com/albums/z92/dazzlej2/greetings/welcome/welcome_17a.gif)
Title: Re: Introduce yourself
Post by: aztecan on November 19, 2008, 11:30:44 pm
Welcome Afreeangelife,

Glad you found us. I look forward to hearing mroe from you.

HUGS,

Mark
Title: Re: Introduce yourself
Post by: jkinatl2 on November 19, 2008, 11:38:50 pm
Welcome to the forums, Afreeangelife!

Title: Re: Introduce yourself
Post by: kajnjewel on November 20, 2008, 12:17:30 am
My name is Darlene Bouse' (pronounced Boo-say). I am a 59 year old, grandmother of four, mother of three sons and the oldest sibling of seven.  I live in Louisiana with my mother and youngest sister. 

I was infected with the disease mid October 1989.  I was being tested ever so often since 1987 due to being date raped.  My last negative result was in Feb. 1989.  So I decided to wait awhile to be tested again. However, on December 19th, 1989 an ex boyfriend called me and said, “I have AIDS”.

TOTAL panic hit. I was so scared. I knew nothing about HIV/AIDS back then other than that a person looses weight and dies within a couple years.  I went to the health department and was tested that same day.  The results took three weeks to come back due to the Christmas and New Years holidays.

It was pure torment waiting for the results. I lived in fear and cried an awful lot. The ex-boyfriend called me the day before I was to get my test results and told me that the test would come back negative because he only said he had AIDS as a joke since he didn't like the fact that I was dating again. 

My oldest son took me to the clinic to get the results.  After what the ex-boyfriend said, I was expecting the results to come back negative. However, when the nurse told me I was HIV+ I started crying and couldn't stop. She tried her best to comfort me.  I couldn't believe what I was hearing. 

I became angry at God, men in general, and life as a whole.  Fear like I have never known hit me and took over my life. My son said I was white as a ghost when I came out and he knew the results were not good. I felt very much like damaged goods. I went into shock, cried for days, many times curled up in the fetal position with my son and girlfriends holding me.  I am so grateful they were there because I know without a doubt I wouldn't be here today if they hadn't been.  I would have committed suicide.

At first, I thought I was infected due to being raped because I honestly didn't think I could get the disease since I wasn't gay, never had a blood transfusion, nor used needles and Glen only said he had AIDS as a joke.  Not once did I really hear” that someone could get it by having sex. After all, I wasn't promiscuous, heck I wasn't even crazy about sex.  I had only been with four guys in my life: an ex-husband of 21 years, the guy that raped me, Glen, the ex-boyfriend of two years and the guy I was dating at the time. We had been dating for three months and even talked about being safe if our relationship ever got physical because of being with others.

However, around October 19th, after a wild night of partying, dancing and drinking we wound up in bed and had ONE wild night of sex.  Due to the alcohol, we were not thinking about being safe – we just did it.  I thought like so many that you can’t get this disease by just having sex once – you had to be really a sexpot. Well, I am here to tell you that it CAN happen because all it took for me was ONE time with the wrong person!

I was so much in denial that I made the docs retest me three times before I would travel to Louisiana to tell the rest of my family that I was HIV+, but all three tests came back positive just like the first one did.

I was so scared my family would disown me like others I had heard about being disowned by family and friends that had HIV/AIDS. However, to my total surprise, everyone was very supportive.  They all cried with me, hugged me, and asked me why I was so scared to tell them.  They ALL said I was their mother, sister, daughter, etc. and there was no way they would disown me and that they would be with me until the end. But, as time passed, my children had children of their own, and the youngest son began to pull away for fear that his children might contract the disease.  To this day, the son that went with me for the results tells me that all I need to do is “Think Positive and IT will go away”.  Yea, right! 

For the first nine months after diagnosis, I gave up on life, quit school, and became very angry, depressed, and even suicidal.  My AIDS specialist told me that I would be dead in two years if I didn’t get a change in my attitude because the stress was taking a huge toll on my immune system and if I didn’t get an attitude adjustment I would die much sooner than I needed to since I should be able to  live 10-12 years before the disease would progress enough to kill me.. He went as far to say I was committing suicide and if I really wanted to end my life then I was doing a good job at it. That was my wake-up call! I realized I was not ready to die!  I started attending support groups and learning all I could about the disease.

I was especially angry at men - all men didn't matter if they were straight or gay because at that time I thought I was infected due to being raped.  So you can imagine how I felt when I walked into my first support group meeting and saw only men.  I started to leave and thank GOD one of them asked, "now where do you think you are going Missy?  I said. "anywhere but here".  He asked if I was infected with HIV and when I relied "yes", he said that I really should stay and moved over and made a place for me.  The guys said I was so angry and quite.  I mainly just sat and listened while at the same time threw daggers at them with my eyes.  Thank goodness some of the things they were saying sunk in.

I saw 14 guys in various stages of the disease laughing, joking, and professing this great love for life in spite of being infected with something that would one day kill them. I heard them say they had HIV/AIDS – BUT the disease did not have them. Before the meeting was over I knew that I wanted what they had!  I am so grateful for the one that encouraged me to stay and that I didn't turn and run which was my general way to handle things.

I tried a couple AIDS trials/studies that made me get very sick. In the early ‘90s there were only three HIV/AIDS medications on the market.  They all made me deathly sick so much so that I stopped all trials and did without any kind of medications until 1995.

In 1995 I had to quit working due to my disease causing major cognitive problems and my disease was progressing toward the AIDS stage faster than normally since I had a very aggressive and strong strain of the disease.  Mom asked me to move back to Louisiana so that I could get reacquainted with my family and be taken care of by them. So I moved back home in 1996 to die.  I sold my life insurance policy – paid for my funeral expenses, paid off bills, and do what so many people do when they get money - go to Disney World.

Shortly after moving to Louisiana, I started on the new protease inhibitors.  At first, I was taking up to 40 pills a day – all at different times of the day - some with food, some without, some every four hours, some every six hours, etc.  It was so hard to stay compliant but I did. I am currently on my seventh regimen. I am only taking 15 pills a day.  Of those, six are for HIV, the rest are for side effects and chronic depression.

My meds cost approximately $1,800 a month. There was a time when the state of Louisiana and federal government helped. But most of the time I was paying $300-$500 a month out of pocket.  My little $600 disability check didn't allow me to do much more than pay for meds and occasionally other things.  Therefore, I started back to work to pay for my meds.  Since I am on disability I am only able to make an additional $800 a month.  If I hadn’t been living with my mom there was no way I could have made it and trust me I tried to live on my own because I really didn’t want to be self sufficient and independent. 

Thank Goodness, I now have Medicare Part D and since I am working part-time, I am able to get a Medicaid supplement for $80 a month in Louisiana to help with other medical bills that Medicaid doesn’t pay for.

The side effects, at times, were terrible. I have suffered with diarrhea, insomnia, stomach problems, headaches, mood swings, liver problems, high cholesterol, developing heart problems, and the list goes on and on. Because of the side effects of all of the various meds I have been on, I have been close to death twice, had body changes, developed fibromyalgia, and many other ailments.  However, I am still free of any opportunistic illnesses and I am still only HIV+ and haven’t progressed to the AIDS diagnosis.

I returned to work part time in 1999 for an AIDS agency as an administrative assistant. I changed jobs and returned to school, finally graduated with a BS in Healthcare Administration three summers ago of 56. I am only able to make $800 a month because I am on disability not because of HIV but mental problems. I have had two mental melt downs (one before HIV and one after HIV).

However, my disability payments were stopped because I had been working more than three years even though it was part-time. My boss is fantastic and carries any extra hours I may make on the side in case if I get sick or need extra help for medications, etc. so that I can keep my Medicare benefits without losing them. I do not have the energy and stamina to work a full 40 hours week.

HIV has brought up discrimination issues with people in my life at times. I have lost friends, relationships with men, doctors, and have had insurance problems because of discrimination.  But my true friends have stuck by me. When I am faced with ignorant comments or questions, I respond by asking them how they would feel if I was their mother, aunt, sister, etc. and if they would still discriminate.  I see ignorance about this disease as a door to educate.

Today, I am an AIDS activist and educator and cherish the moments I have spent helping make a panel for the AIDS quilt and adding it to the many others.  I have pretty much accomplished everything I wanted to do in life, except publishing a book on my life before and after HIV; especially, since so many people think my life would make a great mini series but have no idea how to do so. 

I speak at engagements about the virus whenever and anytime I can. I dearly enjoy putting a face on this disease because so many people, especially women, of all ages, races and color are getting infected in spite of all of the education.  I have been in the newspaper, on local TV programs, in magazines, on the radio, helped start the HIV/AIDS pen pal program for a university in Orlando, Florida. Educating others and putting a face on this disease is like medicine to my soul.

Some of my proudest moments since infection are winning an Unsung Heroes Award for my volunteer work, starting a drop-in center for people living with HIV/AIDS in Galveston, TX and finally graduating at the age of 56 from college after trying three times for a BS in healthcare administration.

I give credit for living so long with this disease to the help I received from the guys in my first support group and the suggestion from my AIDS doc to get an attitude adjustment.

I came across a great Survival Kit for life while at a retreat. It helped me to cope with everything in life that happened to me and is helping me to live the rest of my life with passion in spite of life itself. (You may have heard or seen such a survival kit before; but. this is my take on it).

I honestly feel that everyone really needs a special Survival Kit such as this one! I really would like to share it with you all now. Therefore, this is MY GIFT TO ALL OF YOU!

Below are the items you will need for this survival kit:
1.  A Toothpick
2   A Rubber Band
3.  A Band Aid
4.  A pencil
5.  An Eraser
6.  A Slice of Chewing Gum
7.  A Mint
8.  A Candy Kiss
9.  A Tea Bag

Let me explain:

1.  The toothpick is to remind me to pick out the good qualities in others and myself.  My good ole grandfather used to say that if you can’t say something good about someone then you shouldn't say anything at all. He went on to say that if all you see are terrible qualities in others then what you are really seeing are the qualities that masked yours. OUCH - that one hurt.

2.  The rubber band is to remind me to be flexible because things may always go the way you want it to but it will always work out in the end! I am so grateful that I was flexible. Without flexibility, I would have snapped and been in a mental institution with all of the trials and tribulations I experienced in my lifetime. However, even though I felt stretched to the limits at times, it was nice to know that I was able to bounce back.

3.  The band aid is to remind me to heal my hurt feelings, as well as, others’ around me. The way I dealt with hurt feelings was to write about them while I was hurting. After doing so, I was able to then talk about them in a more sensible manner without saying things that I regretted later. I was then available to be with others when they were hurting instead of only being in my pain.

4.  The pencil is to remind me to list my blessings everyday. I must admit that I was truly blessed. I was blessed that I became positive in December, 1989 instead of the early 80's. I was blessed that when I did start on HIV meds that I did not have too many problems. I was blessed that I was able to live with so much hope than there was before the new meds. I was blessed because I had family and friends that really loved me but above all else, I learned to love myself.  I was blessed because I had a wealth of friends that I would have never known had it not been for being HIV positive. I was blessed because I had a family that was very supportive. This list could go on and on.

5.  The eraser is to remind me that everyone makes mistakes and that you need to forgive yourself by erasing those mistakes and learning from yours. It was great to know that I was not the only one that made mistakes. Most of my life I felt that I was a mistake! However, I finally came to accept that this was not true. My God doesn't make mistakes; therefore, I was not a mistake. I was able to look back over the many mistakes I made; and, in doing so, I learned many great lessons.

6.  The chewing gum is to remind me to stick with it because I can accomplish anything with God and friends onmy side. One of the things I learned was that I was not a quitter. I stuck in there no matter how much I wanted to give up. There was something deep within that would not allow me to stop. For this, I was so grateful.

7.  The mint is to remind me that I am worth a mint to my family, friends and God. I am truly a priceless jewel. I am a millionaire, the child of a King with the inheritance of a mansion in heaven so no matter how poor I may be been on Earth, I am truly rich, indeed, because knowing that all of my friends and family are sheltered in the arms of my God has helped me to have nothing to fear at all but fear itself.

8.  The candy kiss is to remind me that everyone needs a kiss or a hug everyday. I try my best to be there for others as much as I can while at the same time be there for myself. A hug is inexpensive and so easy to give. It is so rewarding when you can see a person light up and smile. It really doesn't hurt to spread a little sweetness to others. In doing so, you can get some kindness and sweetness in return.

9. Finally, the tea bag is to remind me to relax daily and go over my list of blessings. Wow, this simply means that it is okay to take time for myself!!! Most of my life I felt I was being selfish if I did so. I try to count my blessings daily as well as take time to just be with "me" simply because "me" is okay.

I hope you can use this survival kit as well. Adjust it to fit yourself. Hopefully, it will be a blessing to you as it was to me.

Above all, know that I am grateful to be HIV+ because I have learned to appreciate life. You see, I am not dying with this disease; I am living with this disease.  Sure, I know that some day this disease may take my body, but I will never allow it to take my spirit because life IS worth living and by golly, I AM going to live it with a passion!
~~~~~~~~~~~~~~~~`
When I was first infected I honestly thought my life was over when in reality it had just begun!

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Title: Re: Introduce yourself
Post by: Peter Staley on November 20, 2008, 09:39:12 am
Darlene -- what an amazing story.  Thanks for sharing it!

I'm really glad you found us, and am looking forward to getting to know you better in our forums.

Peter
Title: Re: Introduce yourself
Post by: kajnjewel on November 20, 2008, 11:00:50 am
Thanks Peter for the welcome and to everyone else that will welcome.  I miss the live online chats like the old AOL Positive LIving Room and even a couple on the Health Channel.  Someone asked me the other day what did I feel I was missing in my life and I said that I miss my volunteering and chats in the HIV/AIDS rooms.  I am so glad I found these boards and looking forward to meeting and chatting with all of you.

Darlene
a.ka. kajnjewe

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Title: Re: Introduce yourself
Post by: GregoryD on November 20, 2008, 01:36:37 pm
Hello everyone,

I’ve been a member for about a year but haven’t really been involved with the group until recently. I have been HIV+ since 1987.

My former partner died early in 2003 from the usual AIDs related complications. He never accepted that life was changing and refused to be medicated (even to keep himself alive).  It was very hard watching him slowly waist away and died a horrible painful death.

I didn’t expect to find someone new after his death, much less my current partner who is HIV-. We have been together for five years.

My current meds are Atripla, Gabapentin, Diovan, Triamterene, Meridia  and Nexium. I’ve been undetectable for the last 10 years.

My health has been pretty good, except for arthritis and joint problems which has really slowed me down.

I have read POZ magazine for years, keep up the good work.

GregoryD – South Bend Indiana
Title: Re: Introduce yourself
Post by: BT65 on November 20, 2008, 02:27:08 pm
Hey Gregory,

Welcome.  BTW, I live in Mishawaka. :)
Title: Re: Introduce yourself
Post by: Afreerangelife on November 20, 2008, 02:33:14 pm
Thanks to everyone for making me feel so welcome.  ;D
Title: Re: Introduce yourself
Post by: GregoryD on November 20, 2008, 02:45:23 pm
Hey Gregory,

Welcome.  BTW, I live in Mishawaka. :)

Hi Neighbor! thanks for the welcome!  :)
Title: Re: Introduce yourself
Post by: purpledragonfly on November 20, 2008, 05:07:45 pm
Hi Gregory, and welcome to the forums. I too live close by. Just down the road a little in Warsaw. Glad you found this family. You and and BT65 be careful toninght, you all are getting a lot more snow then i will be. I live just south of the snow belt ;D Stay warm and safe tonight to everyone that is getting this snow.

Wendy
Title: Re: Introduce yourself
Post by: CaptCarl on November 20, 2008, 06:43:16 pm
Wow, so many new folks here! Welcome everyone. I'm glad that you found us here at AIDSmeds. These forums are absolutely the best place for people like us to get together. I hve been here about 2 and a half years, and really look forward to getting here a few times a week. There is no better group of people to get to know. Again, welcome.

CaptCarl
Title: Re: Introduce yourself
Post by: GregoryD on November 21, 2008, 10:39:44 am
Hi Wendy and CaptCarl,
thanks for the welcome!
g
Title: Re: Introduce yourself
Post by: mikex1 on November 21, 2008, 05:39:35 pm
Hi everybody,
 My name is Mike and I was diagnosed HIV+ HEPC+ in 94, and am relatively sure that's when I was first infected, although I could have been infected anytime after ~1980. It hurts my heart to read about how most people here, and many others I know, were infected by no fault of their own. See, although I never intended to catch this, I was a prime candidate most of my life. I have a long history (since early teens) of severe alcohol, drug addiction and some of the behaviors that can go along with supporting that life (including many years of daily male prostitution). So when I hear of someone who got this thing from a blood transfusion, non-notifying sex partner, or all the other no-personal-fault reasons, it makes me feel kind of guilty. I do take some comfort in knowing that I never was on the giving end of that non-notifying type of infectious behavior, but that itself has made for some really lonely times as far as relationships for many years. But due to excellent lubricant product research and a healthy right hand, I haven't died from lack of sex, yet. It's just the lonley thing that hurts.
 I am heterosexual, although during all the years of prostitution, I (1) many times wish I would have been gay, and (2) met many, many very dear friends, who, some of which, helped save my life in different ways (and I've also been gladly able to help as well) and are still my very best friends today (some HIV+, some not). Some have died from this illness and it hurt my soul to see them go. Most gay, some not, including my wife who was HIV+ when I met her in 96. Sheri died in 2000.  >:(
 I started meds as soon as I was diagnosed in 94 for a new drug trial clinic (don't remember which meds) but didn't stick around long in that town for other reasons. I started on Combivir, Viramune in 97 thru 2003, but didn't stick to the regimen very well, and usually only took half doses and was diagnosed resistant to those in 2007 and was switched to Atripla which caused some side effects so then switched to Epsicom, Lexiva, Norvir which is what I currently take, (most of the time).
 Current CD4 - 396, VL - 320, and I don't even know what that % figure is I've seen posted here. (I could use some help with that please).  :)
 My health nowadays isn't great, but the bad stuff is mostly a result of my lifestyle for so many years rather than my HIV. The only HIV side-effect I've realy had is consistant night sweats from the begining in 94. I do what I need to daily including working for a company that is very productive in this time of bad economy at a job I really love, and am very experienced and good at, as an industrial maintenance mechanic, electrician (working 7 days a week for the last 3 months, mainly voluntarily } It pays well and I have a nice place to live with the Florida weather and swimming pool and a dog that I really think understands what I say when I'm talking to myself lol.
 Life could probably be better, but judging by the man I met a few weeks ago who had both arms blown off by a electrical accident working for the power company, I'll stick with my HIV for now.
 I hope I didn't bring up bad feelings or memories with this stuff. I usually wasn't a bad person to others in those years I had to have my drugs. I found many ways of self sacrifice that got me enough drugs so that I didn't need to steal and cheat many people. I wound up getting shot 3 times and much more as a result of being too soft, ignorant  and nieve with buying drugs off the street. I was a bad excuse for an 'efficient' drug addict, but I fit the addict part to the tee.
 I like all the post I've read here so far and hope you all will accept me into your community. My hugs go out to you all in our boat!
Mike  ;)
Oh, and yes the drugs are history for my life for a few years now so if your mower comes up missing it wasn't me lol.  ;D
Title: Re: Introduce yourself
Post by: kajnjewel on November 21, 2008, 07:49:09 pm
Hi Mike:

Welcome to a great forum.  I do believe you will find a great home here.  Thanks for sharing your story.

Darlene

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Title: Re: Introduce yourself
Post by: BT65 on November 21, 2008, 08:18:17 pm
Mike,

Welcome to the forums.  I'm sorry to hear about your wife.  My 1st husband died on 02/12/89 (three days before I found out about being HIV+), while I was in treatment for drugs/booze. 

You have a great story.  Please feel at home here, and keep chatting with us.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: leatherman on November 22, 2008, 12:14:08 am
from one mike to another, welcome  ;D

wow! I think everyone has such an interesting story. Thanks for sharing yours. Glad to hear you've worked through some issues in your life too. I have my own troubles with staying compliant to my meds so you're in good company here.  ;D

Wow, so many new folks here!
this thread has been busier lately hasn't it? every time I see it pop up I think back to when I first found this site.  ;D

Happy Holidays to all y'all new-comers!  :-*
Title: Re: Introduce yourself
Post by: GregoryD on November 22, 2008, 07:54:39 am
hi mike,
welcome to the forum  :)
g
Title: Re: Introduce yourself
Post by: lusopt on December 01, 2008, 09:16:35 pm
I was tested positive one month ago, and of course im scared to death... but its incredible to see all the hard fight you guys had till now, you passed a lot, and all of you strugled and survived.

Just want to say that, in this late dark days i`ve been having, all of you are a source of courage for me.

Im so, so sorry for all the pain you guys have been trough.

Thank you all, for existing.
Title: Re: Introduce yourself
Post by: hades01 on December 01, 2008, 09:55:19 pm
oh my god! what a story?
and here i am bitching about taking 1 pill a day (atripla) and no side effects yet...your story just remind me how much i have to thank god and life  :)
Sorry to re post, I'm new and did not notice this introduction thread, Thanks


Hello Everybody!  I'm Jeffrey from Glendale Ca, I have been living with the virus for 16 1/2 years.

While I was a child I was raped from the age of 11-15.  I lost interest in school, having a severe speech impediment did not help, I always knew the answers in class but did not raise my hand because I could not even get my words out, when I did,  I would be laughed at, called fagot, queer, blah yada  blah.  As a result of the abuse I became promiscuous at a young age. I was in the gay bars in Phoenix at age 18.

I had an original diagnosis of AIDS in 1991 with cryptosporidiosis.  I had 6 t cells and the Doctors told me to get my affairs in order.  I remember taking AZT, that's  all there was.  Somehow I managed to stay alive while many of my friends died. 
The early 90's were very hard. I was sick all the time, my friend crypto returned in 1993 and almost killed me.
I took every new drug that came out and managed to get through.  I felt horrible all the time, vomiting from the medications. I was exhausted and had a very low t cell count, I could not stay awake for longer than 4 hours, then would sleep for 10- 11 hours.  I was losing weight and kept getting fevers, night sweats, diarreah like volcanic lava erupted from me all the time. I had to go into the hospital a lot.  Getting IV's of fluid, from dehydrating and needing potasium, I kept passing out.

In 1996 My Mom was diagnosed with cancer.  I was taking Epsom and Videx, the old wafer things!  Chewing them was like  this horrible chalky taste. I also took another blue pill it was rectangular and did not go down easily. I think my t cells were around 90 or so while I was helping to care of my Mom. She had colon cancer, then it returned to her lung. In 1997 the protease inhibitor crixivan was released and the combination saved my life. It was very bittersweet because I lost my Mom Betty in August 1997.

I had severe bouts of depression and anxiety for the rest of the 90's it was very bad, zerit was added  and I experienced the pain of needles  and broken glass going into the bottoms of my feet and the palms of my hands.  I think my t cells were almost 200.   My mental  health was shattered, but I was starting to get a little better, not sleeping as much, eating more.  A year after my Mom died I met a man with HIV.  He was very kind hearted and we started to date. I was up and around and things were going good.  I met my future partners parents, and he met my Dad. I felt secure and happy, although in retrospect I think I settled because I didn't think anybody else would have me. A year after we were seeing each other, my partners Mom went to the airport and jumped off the 6Th level of the parking structure. She did not survive, so now we were  having to deal with suicide. 


This is the most gut wrenching thing I have ever been through.  I felt rage, anger, sorrow, guilt, a roller coaster of emotions.  My partner was devastated, speechless, and I could even attend the memorial, I was disgusted that a person would just give up after my Mom fought so hard to live.  I still have a question mark over my head over the catastrophe.

In 2000, To escape Phoenix, my partner and I moved to Glendale CA.  Right next door to his snottier than hell, ex boyfriend who was doing his best to be the gay Martha Stewart!  I started to feel like I should break up, but holy crap his MOM KILLED HERSELF!  So I stayed with him.  in 2001 I became sick with I can't remember what, colitis or something.  I was depressed doing these obligatory events with people I did not really like.  I made nice thought and was a good Hubby.

 We had planned to go to Six Flags on 9/11, my partner rushed in and woke me up, he said a plane just crashed into the World Trade Center. Like every other American, we sat, crying, shaking for what seemed like a week glued to the TV.  After this, I think built a brick wall around myself.  I stopped talking to people, except a very select few.

In 2003 I developed immune idiopathic thrombocenic purpura.  I was turning black and blue everywhere.  I knew I had a low platelet count, but did not know about ITP, http://www.pdsa.org/index.htm  The Hematologists/Oncologist and other Doctors were confused at first to why I had this while it is a very rare blood disorder with about 200,000 Americans living with it. Steroids were prescribed for the first part of the protocol and I ballooned from 170# to 240#.  The steroids failed, so a splenectomy was performed.  Thanks goodness it was done laproscopicly, only 4 tiny cuts on my tummy, instead of being cut from side to side. The surgery was a success.  I was told there is no guarantee on how long it would
work.

In early 2005 I stated taking down photos in our home.  I stripped the walls, took down the spice rack, the one that sat there looking the same, everything looked the same. The limbo type life I  was living.  I was surviving, but just a shell the person I used to be. I knew I had to get out of a bad relationship.  the only thing holding us together was pain.  I moved into my own place in February.  With a lot of work my previous significant other and I have remained friends.  We share joint custody of our little dog, oh thank the gods for that one without her I do not think I would have made it.
 
 I sat alone for most of 2005- 2006.  Depression, a break up of an 8 year LTR, left me just wallowing.  I went very very deep inside myself to pull out of it.  With the help of anti depressants and therapy I have walked through the pain,the guilt of my mind set of thinking why am I still here and so many talented loving people did not live.  I came out the other side just at the beginning of this year.  I'm out of my cocoon and have started living life. 
At 43 I feel so very comfortable in my skin and know that I am truly blessed. I am grateful to my doctors, friends,& POZ magazine.

I have just started to date this Spring. I have started drawing. Now I say what I feel when I'm feeling it. My entire life I felt like an outsider.  Looking in at people living life. Now I'm living life, every day every minute. If anybody would have told me in 1991, that in 2007 I would be alive, mostly healthy (fatigue and PN get me sometimes), with a 500 CD4 count and an UN detectable viral load (wait we didn't have Geno's and phenos then) I would have thought they were crazy.

 I look forward to getting to know others on this board.  Thanks for reading this and if your having a bad day, just hang in there and remember that it will get better. One book changed my life, The Power Of Intention by Wayne Dyer.  This book saved my life and the little miracles that happen all around me are proof that "When you change the way you look at things, the things you look at change". WD
 
My best to everybody here and I hope to be a great fellow forum member. A special thanks to MOONLIGHT1114, I am so grateful to have met you on the other site. Thank you making me laugh!
JeffreyM
Title: Re: Introduce yourself
Post by: knoxvillecwby on December 06, 2008, 12:35:10 pm
Howdy,

Cowboy Larry here. I live in Knoxville Tn and I have been Hiv Positive since Feb.1989. I currently have a undetectable viral load and 350 t-cells.
I met my partner about 8 months ago and he is Positive also. He has been Positive for 5 years.
I'm a former Professional Bullrider and I am very involved in the Hiv Community here in Tennessee.
Title: Re: Introduce yourself
Post by: BT65 on December 06, 2008, 08:10:54 pm
Hey Knoxville,

Welcome to the forums.  I don't believe I've ever met a professional bullrider.  That sounds nerve-wracking.  Anyway, I hope you stop by again.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: J.R.E. on December 06, 2008, 09:16:08 pm
Hey Knoxville,

  I don't believe I've ever met a professional bullrider.  That sounds nerve-wracking. 
Betty

Sounds a little bone busting too !  ;)   Welcome to the forums, and welcome to everyone else that I may have missed here in this thread.


Ray 8)
Title: Re: Introduce yourself
Post by: GregoryD on December 08, 2008, 08:36:58 am
Welcome Knoxville!
g
Title: Re: Introduce yourself
Post by: MOONLIGHT1114 on December 22, 2008, 07:11:04 pm
I wanted to share with everyone that tonight marks 15 years since my diagnosis, on 12/22/93.  I have so much to be thankful for!  My original post in this thread is #93.

Merry Christmas!  :)

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Title: Re: Introduce yourself
Post by: rondrond on December 24, 2008, 12:50:24 pm
Merry Christmas,  Moonlight.
Title: Re: Introduce yourself
Post by: AndyArrow on December 24, 2008, 01:09:36 pm
I hadn't been on in a while and have missed so many new faces here.  It took me awhile to play catch-up and read through this thread.  I just wanted to say a warm welcome to all.  Hopefully, you will find these forums as helpful & friendly as I have.

Happy Christmas/Hanukkah/Kwanzaa or anything else you feel like celebrating!
AA
Title: Re: Introduce yourself
Post by: kajnjewel on December 24, 2008, 10:39:14 pm
Welcome to a great forum Knoxville.  Been to a lot of rodeos and enjoyed watching the bull riders for sure.  Like you, I have been positive since '89.  Glad to see another long timer.  Welcome aboard.  This is a great forum.
Title: Re: Introduce yourself
Post by: PRMike on December 26, 2008, 07:04:13 pm
Hi well some of you already know my story and know who I am but I'll Intruoduce myself and give a little back ground if that's ok...
Well My name is Miguel but I'm known as Mike and here as PRMike,, I was a Heroine and cocaine addict back in 1980 to 1981 more or less about a year and a half until I just got tired and got myself some help and got clean and then left New York and went to Puerto Rico to get back together with my Wife and Daughter and I became a work aloholic and I did pretty good for myself even tough I did have a little trouble with the drink for a little bit but I did stop that too when I woke up from a Black out that lasted 15 hours which really scared the crap out of me,,, but my ex was so jealous and made it really hard on my job that I was losing a lot of customers and when your a Handyman thats not good and even more when you count on word of mouth so we has our break up again and she flew out to California and I was going to go into the Army, Well Now is when I find out that My BIG MISTAKE was when I PICKED up THIS GUY'S NEEDLE Back when I was using the one and only time that I had done that,,, you see I was a Tester for the pusher man and always had clean needles except this one time that this guy threw his needle down because the coke was too strong for him and he pulled it out of his arm with half of it left and of course his blood and ME like a Dope ADDICT I pick up the Needle and shoot the rest into my arm with his blood and all,, well that's how I got infected because I never shared needles, I did not have sex while I was using, I'm not gay, and I never had a blood transfusion, so it could only be that ONE and ONLY time that I PICKED UP that Mother Fucxxxg Needle... but I must say that I have been very lucky that I have only been sick once and that was because I started to use again back in California and in 2002 I was so tried of using that I tried to kill my self with an overdose of pills and a gram of Crystal Meth and all it did was put me in a coma for 14 days which when I came out I was really pissed off but imagine my T-cell were 6 viral load 400,000+ I had PCP pneumonia so I was dying I asl was wanted by My PO and by the Grace of GOD and a friend/Caseworker which showed me some tough Love I was able to get into a Rehab and save my life,,, I have been clean and sober for the last  6+ years my T- Cells are inbetween 521 and the high 400's and I have been Undectable for the last 6 years so as long as I stay away from Drugs I'll be alright,, Oh and of course take my MEDS,,,this is my story and I'm a long term survivor I have seen a lot of good people come and go and I live in Florida where the services are not really that good for people with HIV/Aids like in California but back in California I would have to deal with all the damm Drugs and Gangs...  Thanks you for listening
Title: Re: Introduce yourself
Post by: tedzbear on December 27, 2008, 05:02:16 am
Hi.  I'm Ted and I tested HIV+ in March 1987 and got my AIDS diagnosis in November 1995.  I didn't get an undetectable viral load until 2004 when I started on TMC114(Prezista), Fuzeon, and Truvada.  My HIV is cross resistant to all the Protease Inhibitors and everything else that doesn't cause peripheral neuropathy (which I have in my feet).  So you can imagine how happy I was to get into the TMC114 phase 2 trial in 2004.  Before that while on Kaletra/Viread/Epivir my viral load was 730,000 and I only had 22 CD4.  After a month on the new Prezista cocktail my viral load dropped to < 50 and it's stayed there ever since.

 ;D ;D ;D ;D ;D ;D ;D
Title: Re: Introduce yourself
Post by: AndyArrow on December 27, 2008, 08:19:14 am
Welcome Mike & Ted.

You will find a great group of people here.

Ted are you still on the Fuzeon?  I was on it for a while ... it worked great but I hated the injections.  Now I'm on Truvada/Prezista/Norvir/Isentress  ... and various other meds.

AA
Title: Re: Introduce yourself
Post by: PRMike on December 27, 2008, 11:29:51 am
Welcome Mike & Ted.

You will find a great group of people here.

Ted are you still on the Fuzeon?  I was on it for a while ... it worked great but I hated the injections.  Now I'm on Truvada/Prezista/Norvir/Isentress  ... and various other meds.

AA
Hi Andy, thank you and yes I know I already have had the pleasure of getting to know some of you here even if it is only though Cyberspace,  I have made a few comments on a few issues and also received help when I was quitting smoking and I used Chantix which I have to say I'm going on 16 months yea...  anyway thanks again always PRMike
Title: Re: Introduce yourself
Post by: BT65 on December 27, 2008, 02:26:59 pm
Hey Ted,

Welcome to the forums.  I'm glad you found us.  This is a great place for information, support etc. and I hope to hear more from you.

PRMike, it's good to hear from you.  Congrats on the continuous non-smoking.  I still smoke now and then, but not like I used to.
Title: Re: Introduce yourself
Post by: OzPaul on December 27, 2008, 04:06:04 pm
Hey Gang

A hearty, if belated welcome to the new forums folks. I'm looking forward to hearing more from you   :D

Cheers, Paul
Title: Re: Introduce yourself
Post by: PRMike on December 27, 2008, 05:21:14 pm
Hey Ted,

Welcome to the forums.  I'm glad you found us.  This is a great place for information, support etc. and I hope to hear more from you.

PRMike, it's good to hear from you.  Congrats on the continuous non-smoking.  I still smoke now and then, but not like I used to.
Hi BT65,  thank you and yeah I remember you from your picture  LOL  I just cant remember the word for it right now, I hate when this happens I know it starts with an A anyway thank you again for the surport as always your friend PRMike
Title: Re: Introduce yourself
Post by: Salteen on December 29, 2008, 12:52:11 am
Hello,

    I haven't been on here in a while but its good to be back!  I am 24 and I have been HIV positive my whole life due to a blood transfusion, although the whole story wasn't discovered until I was 9 or 10. I am currently married to a wonderful man who is HIV negative. We have a wonderful life together we two furry children :-)  I love my puppies. I am currently employed and am working on a master's degree in counseling.

Sarah
Title: Re: Introduce yourself
Post by: pointer165 on December 29, 2008, 08:48:27 pm
Hi everyone...my name is Tony & live in New York City ,right on Christopher street...home of Stonewall!

well..I've lost count of the years I've been POZ...so I guess, it's over TWO DECADES now!...I never went for a test in the late 80s..I was a pharmacist and living in Miami, so at the University of Miami they gave anonymous testing of T-cell counts....so that's what I did first...and it came back below 200, so I just said that's IT!! and went on!.....and has remained about the same number +/- 50 T-cells for ALL that time whether on drugs or off(interesting HUH???..but I always took care of my body)...  ...so I watched/waited till ALL my friends passed on from AIDS...and decided to move back to NYC to get some LIFE back into me.....I really enjoy my gym...I don't do it JUST to look decent but it's FUN!!..I do the pool...I don't even know how to SWIM!!!! and refuse to put my face in the water..so take aquaareobics class or run 1/2 mile and do my own workout..been doing that for FIVE YEARS now!!..and the past two years been taking dance classes...called NIA..and it's a combo of dance, karate etc..I sweat like a pig in there....that's a good class also...otherwise the only thing lacking in my life is a part time relationship....I would like someone, as would almost anyone on this earth to have sex with, talk, walk etc....and not be a full time thing..that gets very boring for me...not that I would fool around...it's been THREE fucking years since I had sex!!...and my hand is getting tired...so HELP!!!

I'm into guyz in their 40s and preferably tops/versatile and on the "piggy" side :-)..PIGGY CAN MEAN HOT NOT UNSAFE!

anyway that's all for now...my email ::: pointer165@gmail.com
....This site has got me through some pretty rough times in my life and I owe much gratitude to it and the people!

Cheers and Happy 2009,
Tony(nyc)


Title: Re: Introduce yourself
Post by: LTSurviver on January 10, 2009, 07:31:44 pm
Hi folks.

Long term survivor here with 22 years under my belt.  I've lived my entire adult life with this.

I was diagnosed in 1987 in the Army.  What an experience that was.  The ignorance was still high back then and at Ft Benning I was treated like a biohazard.  Not allowed to leave my hospital room and nurses came in full biohazard gear.  Really did a number on me. 

I've never seen a t-cell count over 200 or under 160 since and have never started drugs until recently.  I've lived my life as a “normal” person, even married for ten years and another LTR for eight years. Pretty much single now (ladies?).  Weight lifter (natural), bar bouncer, and all-around “healthy” guy.

Five years ago I started having annual bouts with shingles.  Chalked it up to over training in the gym.  Two years ago I started catching every cold, flu and stomach virus one could get each season.  I would spend the entire winter sick. I chalked that up to bouncing in bars and having to manhandle drunks. Five months ago I started a FUO (Fever of Unknown Origin) and it lingered for 2 months until one day it shot up to 105 and I dehydrated in a day.  After a week in the ICU and being told my T-Cells had dropped to 120 I decided it may be time.  Since I left the hospital I have had a severe bout with bronchitis and a sinus/mastoid infection.  And to top it all off, I think I caught a nasty case of moccasin foot (a type of athletes foot) in the hospital shower.  The skin is peeling off the bottom of my feet, but Lamisil Cream seems to be helping.  I spent a total of eight weeks on various antibiotics from the time I was admitted to just a couple weeks ago.

I'll admit I have spent the last twelve years or so totally ignoring my status and the HIV/AIDS scene and community.  I didn't even know anything about the current drugs when all this hit recently.  Years ago I used to chat in AOL Positive Living chat rooms right around the time truly effective therapies were coming out.  But then I just decided to ignore it all and live.

But now I've been pulled back in and here I am.

I'm taking Viramune / Truvada.  Started in November.  I'm going through a mild morbilliform maculopapular rash becoming confluent and forming small plaques on my arms.  Probably a slight allergy to one of the drugs and it seems to be fading now.  I also have some slight edema in my ankles and feet along with neuropathy in my feet.  Amazingly, Acetyl L-Carnitine has eased the neuropathy a bit in just a matter of days.  It's not gone, but it no longer feels like someone took a sledge hammer to my heels unless I'm just getting out of bed.  I still feel like my toes are thawing out from frost bite, though, but not as painful as that.  The edema is just bad enough that it feels like walking on water balloons.  I'll be talking to the doctors about that this week.

Why everything would come crashing down now after 22 years is a mystery to me.

I’m eager to start feeling better so I can get back in the gym.  It’s been rather depressing to see years of work melt away so quickly over the last few months.

Anyhow, just wanted to say ‘Hi’ and introduce myself. :)  I've lurked for a while and the info on the side effects forum has been very helpful.  Thank you!
Title: Re: Introduce yourself
Post by: denb45 on January 10, 2009, 07:57:58 pm
Humm don't know how I missed this Thread, but, anyway here's my story......... My name is Dennis, and I'm 52 yrs. old currently living in Albuquerque, NM, been here since Oct 2001, form Sacramento, Ca. When my T-CELLS went way down to 90, and my VL  was  as high as 998,655 copies, in AUG 1997, I HAD 3 OI's (PCP, Hairy leukoplakia  and Candidiasitus) 

I WAS VERY SICK, with a  FULL BLOWN AIDS DIAGNOSIS, then I WENT ON DISABILITY in  FEB 1998, I've been a LTS since 1987 when I tested HIV+, I didn't start mono-therapy MEDS until 1991, And YES I Survived HIV Mono-therapy and was on AZT back then...I'm a former Public Safety Officer/ County Sheriffs Deputy in the State of Calif. 1988- 1997, until I got sick and had to give up my career back in 1997 :-[

I lost 3 Life Partners and many many Friends and loved ones to AIDS back in the 80's and 90's.................I'm in a (discordant 16 yr. Relationship) w/ a wonderful guy name Bob, he 52 as well he's also on SSDI, and is from Upstate NY, Ogdensburg , he's HIV- he use to be a BSRN for a number of yrs. until a 350+ Male patient fell on  him and crushed his L1 /L5 vertebrae , he walks w/ a cane and takes more Meds that I do, in FEB 2002 he suffered a massive Heart attack and had triple-bypass open heart surgery, it took him about 3 yrs. but he's as good as new and doing very well, like me he currently has a lotta health problems.........

I'm Bald (keep it shaved) and Stand 6 Ft 3 & 190 lbs Have a Dark Brown Goatee w/ a little Gray in it Exercise 4 to 6 times a week on a (Bowflex and 12 Speed Bike) to keep Fit and Stay Healthy! I've been POZ for 20 yrs. I have a little lipo in my face and on my belly, most of the time I look like a pregnant man....LOL  ;D but I have AIDS, so, not much I can really do about the way I look also, I have PN & Diarrhea problems and a whole host of other health problem associated with HIV/AIDS  :-[
     
   I try to take VERY GOOD CARE of myself get Plenty of Rest, don't Drink Smoke or Drug & go to the Doctor every 4 to 5 months, so far I've been VERY lucky (keeping this disease at bay) and with the help of my H.A.R.R.T Medications, I plan on keeping it that way, and do hope you feel the same way

Here's what I'm currently taken right now, and what my current Labs look like:

 T-CELLS 399 - 403 12%   VL UNDETECTABLE AS OF NOV 2008

MEDS:

APTIVUS, NORVIR, TRUVADA
ISENTRESS, ACCUPRIL,OMEGA-3 Fatty Acids
TRICOR, LOPERMIDE
 So, Hello to all of you, who have seen me around, but may not know much about me  ;D
Title: Re: Introduce yourself
Post by: AndyArrow on January 10, 2009, 08:02:56 pm
I just wanted to wish a warm welcome to Sarah, Tony (NYC), LTSurviver and of course Dennis  :) 

This site offers a lot of helpful information and has really nice people here.

AA
Title: Re: Introduce yourself
Post by: denb45 on January 10, 2009, 08:37:34 pm
I just wanted to wish a warm welcome to Sarah, Tony (NYC), LTSurviver and of course Dennis  :) 

This site offers a lot of helpful information and has really nice people here.

AA

Well, a Big Hello to you to Andy, and WELCOME  ;D
Title: Re: Introduce yourself
Post by: Bradford on January 15, 2009, 04:08:22 pm
Hi, I'm Bradford and I was infected with HIV in 1984 and diagnosed HIV Positive in 1985.
March 12, 2009, I will be 57.

Seems almost impossible that I have lived so long, when in 1985, I was given only six months to live.

A decade later, I came out publicly on national television (Canada) on the Dini Petty Show, Dec. 1st. 1994, World AIDS Day.

Since then, I have been an advocate for active health and an HIV/AIDS activist creating awareness around the many HIV and AIDS issues.  In 2004, I launched a web site: Positively Positive - Living with HIV/AIDS www.PositivelyPositive.ca (http://www.PositivelyPositive.ca) , and operate the website on my own, from a computer in my bedroom.   

Health:

I was fortunate to maintain health and be able to go without HIV/AIDS medications for over a dozen years.

In 1997, I developed PCP. I didn't tolerate the medication to treat the PCP and the only alternative was to go on HIV/AIDS medications. And I got better! So now, over a dozen years with med's.

My cd4 count was 425 in 1985.
cd4 count was 40 in 1997 and viral load of several million viral copies.
Today, cd4 count is 940 and I have been undectable since 1997.

Today, my health concerns are not HIV/AIDS related but dealing with the med's, and ageing!

Since 1994, whenever possible, I volunteer my time and energy to participate in HIV and AIDS causes.

 
Title: Re: Introduce yourself
Post by: BT65 on January 16, 2009, 10:47:31 am
Hey Bradford,

Welcome to the forums.  And may I say, you sure are handsome!  What's your secret for your youthful appearance (though I'm female, I take all suggestions).

I think a lot of us are dealing with aging and med issues, more than OI's etc.  Hopefully there will be more research done on aging amongst the HIV population in the future. 

Hope you join us more often!
  Luv,
Betty
Title: Re: Introduce yourself
Post by: J.R.E. on January 18, 2009, 08:01:02 pm
Hello Bradford,

Welcome to the forums ( Althought I am sure I remember you on the older forums)

I'm Ray, 57 years of age. From the Tampa Bay area. I was also diagnosed positive in 1985. Was infected in July of 1985. Started meds in October or 03.( along with an Aids diagnosis at 16 t-cells ).

I completely understand what you mean about dealing with the meds and aging ! Slight Neuropathy here, and of course all the minor hip and joint and muscle aches. Just hanging tin there the best one can.


Ray
Title: Re: Introduce yourself
Post by: rusty.g7 on January 22, 2009, 04:37:40 pm
Hello All   I love this website and especially these forums.  The information here is exactly what I want to know and the people here sure seem to know a lot and seem very caring and supportive.

I've been poz about 20 years now, my VL has been NonDetect for 10 months (finally found the right combo)  CD4 bounces from 150-200, with my CD4% at 22% and generally trending upward.

My current meds are Prezista, Isentress, Truvada, and Norvir with Bactrim.  This is the easiest combo I've ever been on both from adherence and side effects.

I'm also taking Nexium, and Nadolol for a liver portal hypertension problem that causes esophageal varices.  I had some burst last March (I had no idea how pretty red blood looks in toilet water ;)) Now I get EGDs every six months.

I work full time at the post office which provides me with my insurance and spending money and in general feel good with just a touch of PN and lipo.  I'm gay and have a non-poz hubby.  We've been together for 8 years now.  I was in the US Navy on submarines for 6 years back in the eighties before don't ask, don't tell.  We mostly are homebodies, but get out to see touring companies of broadway shows and to visit Longwood gardens.

I'm 47, 5'11", weigh about 170, and live in Delaware about an hour from Philadelphia and Baltimore.  I quilt some, garden some, cook some, and read lots.
I should eat better, I should exercise, and I should know more about my drugs and diseases.
These forums and lessons have already encouraged me to work on all those.  (I just hope I can keep it up as I tend to not stick to things  :()

Rusty
Title: Re: Introduce yourself
Post by: J.R.E. on January 22, 2009, 06:57:24 pm
Hello Rusty,

Welcome to the forums, and thanks for sharing your story !!


Take care of yourself----Ray
Title: Re: Introduce yourself
Post by: BT65 on January 22, 2009, 10:43:38 pm
Hey Rusty,

Welcome.  I hope to hear more from you!

Betty
Title: Re: Introduce yourself
Post by: AndyArrow on January 23, 2009, 05:32:45 am
Hi Bradford & Rusty,

I just wanted to welcome you both to the forums.  I hope we'll hear more from you both.

Rusty -- I have esophageal dilations every couple of months (used to be very week) because of a esophagitis & a stricture so I can sort of understand what you are going through.

AA
Title: Re: Introduce yourself
Post by: Bradford on January 25, 2009, 01:07:07 pm
HI All, 

Hi Rusty

 I have a non poz hubby too.  We just celebrated 9 years together. We met in 2000 and we were married in 2001 at St. John's United Church, Vancouver, Canada; years before it was made legal here in Canada for same sex partners to marry!

HUGS to all!
Title: Re: Introduce yourself
Post by: aztecan on January 26, 2009, 04:13:43 pm
Howdy Bradford and Rusty! Welcome aboard.

I also tested postiive in 1985, started meds in 96 and have the humps, bumps and lumps to prove it.  ;)

I am right there with you with the HIV and aging thing, Bradford. I have trouble discerning what causes what at different times.

Hey Rusty, do you have Hep C as well? Just wondering becasue that is where I have seen people have trouble with the esophogeal varices.

I love to garden and travel.

Again, welcome to you both.

HUGS,

Mark
Title: Re: Introduce yourself
Post by: rusty.g7 on January 26, 2009, 06:02:22 pm
Thank you all for your great welcome.  It feels like home here already.

Mark - nope, I don't have Hep C.  My varices are caused by liver portal hypertension which in turn is caused by Nodular Regenerative Hyperplasia which when googled yields:

Diffuse nodular regenerative hyperplasia (NRH) of the liver is an acquired architectural disturbance that can lead to portal hypertension. Although frequently associated with autoimmune or hematologic malignancies, its exact pathogenesis remains largely unknown.

My docs discovered this after my liver numbers went nuts soon after beginning pravachol, and an allergic reaction to ziagen, though they tell me neither caused it.

Don't want to get too off track here so...

Thanks again for the warm welcome,
Rusty
Title: Re: Introduce yourself
Post by: amaphot on February 04, 2009, 11:51:42 pm
Hi all.  I'm Derry and I live in Indiana, USA.  I found out I was HIV+ in 1988, shortly after the death of my partner from AIDS (PCP was the official cause of death).  I have been on various medications since 1989, beginning with AZT which was all that was readily available 20 years ago.  I've had limited experience with other medications in the intervening years.  For the most part, I've been relatively healthy over the years with my CD4 count remaining above 200 and my viral load below 50,000 until 2003.  I elected to not take most medications until it was evident that my CD4 count would settle below 200 and stay that way after 2006.  During this period and presently, I am a patient within the Veterans Administration health care system.  I was classified as eligible for disability in 2003 and receive Social Security Disability since that time. 

I've been following this thread and a few others for the past couple of months.  I became interested in looking to these forums as a way to become a little more integrated into the online HIV/AIDS community.  Several years ago I was involved in organized support groups and found them to be helpful.  However, over time I lost contact as people that I had become friends with eventually passed away.  Although I make a point of keeping abreast of treatment and social issues surrounding this disease, I've slowly lost any peer-to-peer support.  I have a great support team of medical providers with the VA in Indianapolis and I've had 5-6 years to develop a good ongoing relationship with my ID doctor. 

I've decided to introduce myself in this forum with the goal of becoming more involved with others and working on becoming a little more in touch with myself and my treatment and social issues.  Perhaps I can also be of benefit to others as well.  I like a lot of what I read here and find this to be a step in the right direction.

I hope all of you are doing well and thanks for taking the time to read this.
Title: Re: Introduce yourself
Post by: OzPaul on February 05, 2009, 12:51:16 am
Hi Rusty and Derry

Welcome to the Forums !

We're a great  bunch of folks here in our global community. Make your self at home.

I'll look forward to hearing more from you both.

Paul
Title: Re: Introduce yourself
Post by: BT65 on February 05, 2009, 08:35:11 am
Hey Derry,

Welcome. I also live in Indiana (South Bend).  I look forward to getting to know you.

Betty
Title: Re: Introduce yourself
Post by: mewithu on February 05, 2009, 09:02:56 am
 This truly is a nice way to meet everyone on the site. Great Idea whoever came up with this.
  Hello Everyone and I appreciate any and all information shared on this site.
  God bless everyone of you. Jerry :)
Title: Re: Introduce yourself
Post by: aztecan on February 05, 2009, 10:02:15 am
Welcome Derry and Jerry!

Glad to see you both here and I look forward to hearing more from you,

HUGS,

Mark

Title: Re: Introduce yourself
Post by: AndyArrow on February 05, 2009, 11:39:43 pm
Hello Derry & Jerry,

I hope we hear a lot more from the two of you in the future. 

And to Derry I also live in Indiana (Hammond) although my GI doctor is at IUPUI in Indianapolis.

AA
Title: Re: Introduce yourself
Post by: bobik on February 17, 2009, 08:34:03 am
Since I haven't been here since 3 years, I thought it 'd be nice to re-introduced myself.

My name is Coen, I'm a 44 year old gay leatherman from The Hague, Netherlands. Aids diagnosis in 1993 because of KS. On HAART since 1996, undetectable since. A lot of minor health problems over the years, which do not keep me from living life to the fullest.

What happened in the last years since I was here:

I got married! In march 2007 we got married after a 21 years relationship, long enough to make the big step.
I became the chair of the local department of the Dutch HIV foundation. I have been doing that for two years now.
I still haven't finished my conservatoire study as a singer. Hopefully I will do it this summer, but having some health problems now, it might become 2010 as well....
I became specialised in helping transgenders with their voice development, and even appeared on national TV with that work.

So, now you have a bit an idea who I am....
Title: Re: Introduce yourself
Post by: Grasshopper on February 17, 2009, 10:55:26 am
Good to see you again Coen.

http://player.omroep.nl/?aflID=8790991     forward to timeframe 23:00  to see Bobik

;-)
grasshopper
Title: Re: Introduce yourself
Post by: AndyArrow on February 17, 2009, 04:16:32 pm
Welcome back Coen,

First a big congradulations on your marriage!  I hope you'll stick around now that you've popped back in.  Sounds like you are doing some really interesting and fulfilling work.

AA
Title: Re: Introduce yourself
Post by: OzPaul on February 17, 2009, 05:13:11 pm
Hi Coen

It's wonderful to see you back here again ! It hard to believe it's been three years. I'm glad you're doing well and congratulations on your marriage  :D

I'd love to see you around here more often. Drop us a note from time to time !

Cheers, Paul
Title: Re: Introduce yourself
Post by: lonewolf on February 18, 2009, 02:39:42 pm
Not a LTS, (found out with an insurance test in 2005, just went on first meds, Atripla a week ago), but just have to let each and everyone of you know, that reading this thread has brought a flood of emotions. 
Thank you all for your courage, your fight, your spirit, and your love of one another,  and can't forget your unbiased support for each and everyone who reads or posts to aidsmeds.   I have been a member of aidsmeds since finding out I was positive, and signing on the same day in 2005.

Every one of you, and all of us actually who are sharing life with HIV, continually find this site and each of you, everything we need, (along with our HIV Dr's)  in this world where there is still alot of stigma, bias, and lack of knowledge of HIV.

Wish all of your posts in this thread could be published in a book for the whole world to see what a wonderful, caring, compasionate, and real person each and everyone of you are, as well as those who you love, and those who love you!!!

Thank you, with every beat of my heart.
Hugs,  Bruce
Title: Re: Introduce yourself
Post by: Oh501sguy on February 19, 2009, 11:57:25 pm
Hi,

My name is Chuck.  A few days ago was Valentine's Day. It was also my 16th anniversary being HIV poz. I'm one of the lucky ones.  I'm 44 and knock on wood I haven't been ill.  My T-Cells have been all over from 300 to 720 where they are now.  Currently undectectable or was at least at my last Doc's appt.  I just did my bloodwork and am going in on Tuesday to see my Doc.  Let's hope all is still good.  My doc switched me from the sustiva combo to Atripla.  I really like it.  Still get the sustiva buzz that helps me relax at night as sustiva is in this one a day pill.

I guess the reason I wanted to "introduce myself" is well... I don't go to the bars, I don't have a lot of friends.  Actually I have very few friends at all.  For the past decade or more I've pretty much closed myself in.  I go to work, come home, go to work come home... bla bla... I work in an office of all women ...and god help them if they haven't figured out I'm gay by now.  Geez... Im the only one who isn't married, has kids etc.  Every staff meeting is a groaner.  Today it was all about potty training their kids!  Or pre staff meeting if you would rather say... we do talk about work! 

In other words, I don't have a circle of friends.  I do have two dear friends whom I email, text or call daily and I've known these people for over 20 years.  Bless them.  But to be honest, I would love to have a circle of friends who can relate to my being poz because they are in the same situation. 

I find myself hanging out in an aol chatroom with a great group of guys that I've never met in person -HIV chatroom.  They are super wonderful.  This christmas we exchanged mail addresses and for the first time in my life I had all of these wonderful cards at Christmas.  I actually cried because it felt so nice that so many of the guys did that.   

It's 11:45pm, I'm in bed with my dog.  I'm feeling pretty alone right now. As I read through some of the postings on this board I see people who whom I would like to get to know.  There is a sense of warmth and caring here.   Usually I have a hard time trusting anyone until I get to know them.  Columbus is a very difficult place to fit in.  Very "cliquish". 

My biggest fear is growing old (er) and ending up alone.  Of course I don't have any family except an older brother and we don't talk.   I'm terrified where I'm going to end up if and when I do become ill.
I think I've had an ok life. Not great at all, but others have had it worse.   

Hey....thanks for letting me ramble -

Title: Re: Introduce yourself
Post by: OzPaul on February 20, 2009, 12:43:19 am
Hi Chuck

Good to hear from you ! Thanks for reaching out to us. I've been around the Forums for about 4 years now and though I don't post much, I always feel welcome and read the posts with keen interest.

I'm fortunate in that I have a supportive partner and friends, most of whom are far from where I live. I keep in touch with them by email and phone calls much like yourself.

I live in a small  beach town on the southeast  coast of Australia and like you, feel isolated at times. The folks in town are friendly enough but are cliquish too, just like your experience in Columbus. I don't have  coworkers as my partner and I have a small B&B. The guests,  who come from all over Australia and the world, are usually quite friendly, but they leave and then it's quiet again. I really love the peaceful environment here,  the bush and beach, but sometimes I yearn for more  social interaction.

I've found the people here at the forums here very supportive and really like a family though I don't know them well personally. I think that if you hang out a bit here, you may find the same thing. I guess we take our friends where we find them. Thank God for the Internet. It does help me feel more connected. Thanks too to Peter Staley who founded Aidsmeds all those years ago.

Feel free to PM me Chuck if you like. I'm far away in terms of geography but also just a few keystrokes away.

Take good  care of your self, okay ?

(((((HUGS)))))
Paul
Title: Re: Introduce yourself
Post by: aztecan on February 20, 2009, 11:37:11 am
Hey Chuck,

Welcome aboard.

I live in Aztec, a small town in northwest New Mexico. OK, I live in the middle of nowhere, but its a fun nowhere. ;)

Feel free to join in, ramble on, or just share a good laugh - or a groan when the feeling hits you.

Glad you are here.

HUGS,

Mark

Title: Re: Introduce yourself
Post by: BT65 on February 20, 2009, 06:29:07 pm
Hey Chuck,

Welcome!  You know, sometimes I wonder about what it's going to be like as I keep getting older and older, but I try not to stay in that place too long, because I can also project, and that usually turns out not good. 

Anyway, like Mark said, just join in.  Glad you introduced yourself and I hope to see more from you.
  Luv,
Betty
Title: Re: Introduce yourself
Post by: crag on February 23, 2009, 12:26:33 pm
Hi.

From NYC. Got poz in 1985/1986 in the US Army. Left the Army in like 1989 (end of the year). Went back to NYC. Didn't really have any issues until like 1994. My face stated to swell. Turned out to be KS under the skin. Did some cemo (ABV) which took care of of the KS in a weekend.

I tolerated that shit (ABV) for a year. Finally in May of 1995 I fell out on Fire island. And it was all down hill from there. Left NYC in September of 1995 with like 10 T-cells and weighed 110LBS (I was a big circuit bunny weighing 200lbs just 6 months earlier). Had a host of illnesses. The KS came back with a vengeance. CMV had hit my eyes and stomach, and various other shit you get when your immune system is in the toilet. I even had a port for easy access. Used to access it myself cause most didn't have a clue.   That was a relief actually. I got SO over being stuck twice a day while in the hospital.

Basically i came to South Florida to die in my mother's arms. Didn't turn out that way. With the help of the Palm Beach VA, and her care I managed to hang on till 1996/1997. With the *new* drugs I bounced back and  here I am.

Almost all of the issues I have now are side effects. Some have been serious (requiring various surgeries).  Took me years to FINALLY accept the fact that i was probably  gonna live past 50 (probably even past 60). So back at life I suppose. Though I admit I see life very different now. Which is good.

Anyway this is the short short version. My way of giving yawl a shout out.

-Crag (Stephen)
Title: Re: Introduce yourself
Post by: PRMike on February 23, 2009, 05:16:29 pm
Hi Crag, I'm glad to see that your hanging in there and it looks like your a fighter which is a good thing..
I hope that I will not offened you with what I'm going to say but I sence a lot of anger from your post and in my opinon you should try to let that anger go and try to live the best way you can,,, the reason I say this is because I got to a point that i was so tired of life that I tried to commit suicide, now I mustadmit that I was using Drugs at the time..
anyway I hope and pray that you will be alright and remember that here you have some friends ok bye for now always PRMike
Title: Re: Introduce yourself
Post by: crag on February 23, 2009, 05:53:19 pm
Hi Crag, I'm glad to see that your hanging in there and it looks like your a fighter which is a good thing..
I hope that I will not offened you with what I'm going to say but I sence a lot of anger from your post and in my opinon you should try to let that anger go and try to live the best way you can,,, the reason I say this is because I got to a point that i was so tired of life that I tried to commit suicide, now I mustadmit that I was using Drugs at the time..
anyway I hope and pray that you will be alright and remember that here you have some friends ok bye for now always PRMike

Thanks for your concern. But I am far from angry. I just come acrsss as "hard". :) I mean, like everyone else I've about had it with the American idea of health care, but who hasn't?

Dealing with death so close, for years has a way of calming you down. You realize what is really important. And frankly, I consider all this time after 1996 as gravy. I never expected to live so long. And now it looks like I'll even live longer.
Title: Re: Introduce yourself
Post by: BT65 on February 23, 2009, 08:18:38 pm
Hey Stephen,

Welcome to the forums.  There's tons of good people here, and I hope we get to know you better.  Feel free to jump in anywhere.
 Luv,
Betty
Title: Re: Introduce yourself
Post by: Winiroo on February 23, 2009, 08:39:25 pm
Thank you for serving our country and welcome to AIDSmeds.
Title: Re: Introduce yourself
Post by: Peter Staley on February 24, 2009, 09:37:37 am
Welcome to our forums, Stephen.  Glad you found us!

Peter
Forums Moderator
Title: Re: Introduce yourself
Post by: rondrond on February 24, 2009, 12:05:59 pm
(http://img408.imageshack.us/img408/3325/193852436973701097.png)


Hi Chuck,
It is amazing how many people you can find online, yet can't find a soul in your own hometown.

If I was younger and had the energy and funds, I would be on a constant 'road trip'.. :D  meeting and greeting. Glad you're here,

Ron~

 
Title: Re: Introduce yourself
Post by: rondrond on February 24, 2009, 12:08:03 pm
Hi Stephen,

Wanted to say, Howdy, and welcome you to the forums.

Ron~
Title: Re: Introduce yourself
Post by: OzPaul on February 25, 2009, 12:20:14 am
Hi Stephen

I too want to welcome you to the forums ! I'll look forward to hearing more from you.

Cheers, Paul
Title: Re: Introduce yourself
Post by: blackwingbear on March 08, 2010, 02:31:11 pm
Hi there. My name is Darren Mitton. I was diagnosed about 5 years ago. I was born in Veedersburg, Indiana (a little one-stoplight town about ah hour west of Indianapolis and an hour hour north of Terre Haute, or 45 minutes south of Lafayette. I first went to college in Vincennes (IN), but was unsatisfied and moved to Danville (IL), where I changed my major over from Broadcasting to Psychology.I then moved to Attica (IN) and then to Williamsport, and settled in Crawfordsville working for a factory. In 1998, I moved to Terre Haute (IN) where I continued my education at Indiana State University in the field of Psychology and went to work for AOL/Aegis-Trilegent.. In 2000, my father passed away..In that time I was dealing with some soul-searching, and moved up to Logansport (IN). While I was working in a factory up there, I was in an industrial accident (luckily, left me with only 1 scar). After that, I moved back to Terre Haute for an short while, and ended up moving down to Byron (GA) in with some really good friends I call "the family".. When my my mother died in December of 2002, I moved back up to Terre Haute and went back to work for AOL/Aegis-Trilegent. I bought a house, and really pulled the 9-to-5 racket.Well, the house ended up being a money pit that drove me into debt and left me homeless with no where to go. Some very good friends of mine (RIP Bert, I love you,bro) asked me to move down to Florida with them and I agreed. Unfortunately, he passed away on the drive down, and after his funeral in Florida I moved back up to live with "the family" that I was lucky enough to have in Byron (GA). I lived and worked there from February 2004 until January of 2006 when THE LAST CASTLE (a specialty retail outlet specializing in gaming RPGs, card games, comics, and anime) shut down. Soon thereafter, I moved up here to Atlanta, in with my friends Hal Doby and Charles Whitenberg. I ended-up moving-in with my best-friend, Doug. 2 years later, I moved back down to the Atlanta area. I'm 35 years old...5'10", 165lbs. Sagittarius. Have 4 tattoos.Hobbies include: reading (fiction to non-), watching movies (particularly horror), RPGing, playing card games,going to concerts (big music buff), camping, and spending time with friends... etc...

Next! *grin*
Title: Re: Introduce yourself
Post by: Tim Horn on March 08, 2010, 06:59:30 pm
Hi Darren (and apologies to everyone for the hijack):

Just wanted to let you know that this particular forum is for long-term survivors only. Have a look here, if you wouldn't mind: http://forums.poz.com/index.php?topic=11166.0 (http://forums.poz.com/index.php?topic=11166.0)

Thanks for understanding,

Tim Horn
Title: Re: Introduce yourself
Post by: Endgame on July 21, 2013, 12:23:00 am
Hi.
Jonno from London UK here.
I had a diagnosis for HTLV-3 in Feb 1983. My doctor was white as a sheet and shaking when she told me. I guess she wasn't ready to actually get a patient but I knew the result before she did, my first ever date had been one of the first to die in the UK and it was all over the newspapers. My second date and first partner didn't last too long either. I worked as an activist as everybody else did but I was concerned about the trauma that the nursing staff suffered as a result of the fear and stress some of them went through. The girl that was nursing my partner  just walked out of her job at the hospital to come home with us when he got near the end and wanted to be home. When he died she never went back to nursing because she couldn't face dealing with another young guys horrendous death. She must have had PTSD. It was just called stress at the time but it was a serious problem for lots of staff until everybody gained some experience and worked out treatment and nursing protocols.
I was webmaster of NHIVNA (nhivna.org) and because I ran the web site and provided my celebrity boyfriend as patron I got to infiltrate the drug companies and meet the research teams. One day I'll tell everyone what I did to oil things a bit and get the drug research moving.
once we got some molecules to test and ended the secrecy between companies I walked off to get a life. my career was going a bit too well so I pulled it in a bit in case I got well known as I did not want my death to be high profile production.

I did all the trials and puked for years, DDI was the worse stuff, it was like dishwasher tablets that took hours to dissolve properly and we had to down them 6 at a time and then try not to throw up or we had to take them again.
I have been plodding along and didn't really notice the time that has passed. I'm 51 but I look 35 and my skin is like a baby's bum. I think I know why as some of the trials I did were a bit off piste. The toxicity of some of the early molecules was too high to go to into initial healthy volunteer trials. I had nothing to lose at the time so my motto if there was something interesting going on was nick it and neck it. There was no v.l. test to verify results in any case, but there were some amazingly high tech compounds developed then that lead to the possibility of life extension and enhancement drugs being developed now. (oops secrets, too bad)
I quite enjoyed myself as a militant activist and sometimes think that I might have died early from drink and drugs if HIV had not motivated me to look after myself and take life seriously.

I lived quite well for over 20 years without a symptom. the little pills we get now are lovely, and the side effects are trivial.The early Ritonivir/ DDI /AZT dosage caused diarrhoea so explosive it made everybody's asshole burn like a dragons nostril.

I have not even thought about HIV for years. The pills are such an old habit that I throw them down and never think about why I take them. I thought the prejudice against us was gone and equality was taken for granted.
Suddenly my health got a bit worrying and I had run out of money. I expected that I had no worries as it was never a problem to get social care and housing for anybody that needed it the last time I had tried. There were even offers of free holidays in Ibiza if we fancied it.

Was I wrong! My local council have decided to make me homeless as they have taken things too far and treat HIV as a controlled condition. The policy is to ignore doctors advice and use the localism act to withdraw all social care from HIV infected people. even the Terrence Higgins trust was unprepared when I called them. The staff there have never seen a person with full blown aids and think that Terrence was born in the time of Newton, they even made a grainy black and white pic for the website to distance his image from the trendy content they provide. i just have a bit of fatigue and nerve damage and had been stuck in a chair after being attacked by a large dog. I asked for some help getting some food and nursing care but they  had no idea what to do with me, so they left me there for 3 days and then told me that my condition was too complex for them, and that they did not think there were any people like me left. That pissed me off big time but I got the same response from over 20 other charities. They tick boxes on the computer and have meetings, then give up. If I mention the fact that people in HIV charity work would get on a bus and go wipe up a strangers shit not so long ago, they get offended. They just give out badges and the sort of advice that anybody else can get from Google. I asked what the THT crisis fund was for and got no reply. I complained and received an apology for not replying to my mail but it has still not been replied to. A former worker has told me that it is now used as the Christmas Bollinger fund. I would not be surprised if that was true after speaking with some of the staff there.
I really don't want to start another round of campaigns at my time of life but I can't let this behaviour continue so I have applied to the Guinness book of records to be acknowledged as the longest survivor in the UK. My application has been accepted pending verification, and If I succeed I can use it to get some publicity and hope to raise some awareness that HIV did not go away and is going to be shouting loudly to prove it. If anybody else in London wants to do some old school egg throwing, shaming and blackmailing to change things back again, get in touch.
Title: Re: Introduce yourself
Post by: mitch777 on July 21, 2013, 08:25:46 am
Hi Jonno.
What a great opening post!
Living in the US, I am not familiar with any of the organizations that you mentioned but it sounds like a sad state of affairs.
Kudos to you in regard to your activism!
Having been poz since October 1982, I can relate to much of what you said. The good and the not so good. It's nice to see that you retained your sense of humor through all of this. :)
I'm sorry to hear about your current situation.
Wish you the best!
Oh, and welcome to the forums!
Mitch
Title: Re: Introduce yourself
Post by: flaconvert on July 25, 2013, 03:02:40 pm
Hello everyone. I was diagnosed with HIV in January of 1989. I have been healthy for the most part although i do struggle with major depression. I live in central Florida and work in the health care field. I am looking forward to participating in the LTS forum. Hope to meet some local HIVers as well.
Title: Re: Introduce yourself
Post by: mitch777 on July 25, 2013, 04:34:12 pm
Hello everyone. I was diagnosed with HIV in January of 1989. I have been healthy for the most part although i do struggle with major depression. I live in central Florida and work in the health care field. I am looking forward to participating in the LTS forum. Hope to meet some local HIVers as well.
Hi Convert!
I can't remember if I've welcomed you yet  ::) but if so, here's another. :)
This forum has been very helpful in to me in so many ways. I'm sure it will for you as well.
We're an odd bunch (maybe I should speak for myself) but the advice and support can't be beat.
Glad you joined us!
m.
Title: Re: Introduce yourself
Post by: Jr on December 13, 2013, 01:19:17 am
Hi. Not sure if this thread still gets noticed or not, but decided to introduce myself.  I'm from California and was diagnosed back in 1991, just shy of my 18th birthday.  Life has become more lonely over the years and I am hoping to change that for myself.  I don't have much of a support structure of friends or family in my life, so I thought I would try out these forums as a first step.  See you all around the forums.  :)
Title: Re: Introduce yourself
Post by: BT65 on December 13, 2013, 03:52:39 am
Hi. Not sure if this thread still gets noticed or not, but decided to introduce myself.  I'm from California and was diagnosed back in 1991, just shy of my 18th birthday.  Life has become more lonely over the years and I am hoping to change that for myself.  I don't have much of a support structure of friends or family in my life, so I thought I would try out these forums as a first step.  See you all around the forums.  :)

Hi Jr, welcome to the forums! :)
Title: Re: Introduce yourself
Post by: mitch777 on December 14, 2013, 04:16:01 pm
Jr,

 This is a great place to give and receive support. Welcome! :)

m.
Title: Re: Introduce yourself
Post by: rondrond on December 15, 2013, 07:59:52 am
Welcome Jr 
Title: Re: Introduce yourself
Post by: wolfter on December 15, 2013, 08:05:33 am
Welcome Jr.  There's a great amount of knowledge and support here.  Hope to hear more from ya.

Wolfie
Title: Re: Introduce yourself
Post by: Fisher on December 15, 2013, 02:26:43 pm
Hi My Nickname is Fisher. I am 57. Likely HIV+ since December ’82. Have been very fortunate for many, many years. Till about a year ago when the virus found a way around my natural resistance.

Since that shock, I have been twice as fortunate, coming back to full life, reaching out for joy and happiness and fun and laughter in every moment. Lost 30 pounds on purpose. Fell in love for the first time in my life. Still involved with research studies at the National Institutes of Health. Met many great people from this site in the last nine months.  Wonderful people with golden hearts.

Finally having to confront HIV, I was forced to confront my own self. And I made the choice to live a life well worth living. Rather than taking it, HIV gave me my life back. I’ze a crazy bear, now, but a very happy bear, indeed!
Title: Re: Introduce yourself
Post by: neb_top on January 11, 2014, 12:11:21 am
hello; i'm Jim and tested poz dec 1987.

dec 2013 25th anniversary.

i've been through lots and lots and lots. azt saved my life despite me having trouble tolerating it.  mostly thinking and looking at milk make me extremely nauseous.

feel free to write me.  i'll write more.

Title: Re: Introduce yourself
Post by: BT65 on January 12, 2014, 06:41:56 pm
Welcome neb-top!
Title: Re: Introduce yourself
Post by: livingmmy9lives on February 02, 2014, 05:37:40 pm
My name is Charlie. I was diagnosed with hiv in 1988 when I was 23 and aids in 1995. I'm 49 now. Nearly everyone I knew who was positive at the time are now dead. I happened to live in the right place at the right time and was lucky enough to get on an saquinavir study which I believe saved my life. Having hiv/aids has been and continues to be a bit of a health rollercoaster ride. I went on disability in 1996 and returned to work for a while but it didn't work out well and was impacting my health negatively so I left permanently. I wish I was consistently well enough to be working and making money because I do not enjoy being poor and it gets harder to get by every year. My major health issues presently are chronic fatigue, anxiety, depression, painful neuropathy and chronic insomnia. Recently I was told that there was something wrong with my hypothalmus or pituitary glad and may have a brain tumor but tests show no tumor & then last week I went to the dentist & he found a purple mark inside my mouth and is saying worst case scenario it could be oral cancer (irony being I have never been a cigarette smoker) and it's taking me 2 an 1/2 month to get in to see a doctor to get it checked out which is frustrating. A question for you long term survivors - is it normal to feel totally drained of energy nearly every day? I used to drink coffee to give me energy but I am very sensitive to caffeine and it contributes to my anxiety. I live in Rhode Island with my partner of almost 5 years who is also a long-term survivor. We have a cat and a dog.  Are there other long-term survivors here from my area?
Title: Re: Introduce yourself
Post by: livingmmy9lives on February 02, 2014, 05:40:10 pm
Hey Jim - Neb-top: I haven't heard from you in a while and wondering if you are alright? Like a dummy I never saved your e-mail address. Charlie.
Title: Re: Introduce yourself
Post by: Miss Philicia on February 02, 2014, 06:12:24 pm
livingmmy9lives, are you on medication(s) for anxiety, depression and insomnia?
Title: Re: Introduce yourself
Post by: roxiewrites on March 22, 2014, 05:46:12 am
Hello everyone. My name is Roxie, and I am 29 years old. I live in the Houston area, Texas. I was born with the virus in 1984, but not diagnosed until 1989. I lost both of my parents to AIDS as a child. My mom when I was 7 (1992), and my dad when I was 10 (1995). I have one younger brother by four years who is HIV negative.

I have been on treatment for basically my entire life, and have always been pretty healthy, especially in my adult life. I've been undectable for about 4 years now, and it's wonderful. I'm currently on Selzentry and Intelence, but I've taken (and built resistance to) just about every drug out there. I developed lipodystrophy a few years ago, and it has been it's own separate level of hell to learn to live with, but I'm managing. 

I have been with my partner for almost 15 years (yep, since I was 14, haha), and he is HIV negative. It's been hard, dealing with acceptance and understanding from his family over the years, but we've gotten through it.

I also suffer from bipolar disorder, agoraphobia, social anxiety, and panic attacks, so as much as I hate it, I'm on SSI. I'm a writer and artist though, and spend my days painting and working to finish two novels I am currently in almost done with and tons of short stories. I've got one book out there in the world already.

I joined this forum because I know no one like me in my real life, and while I have a great support system in my partner and my family, I just feel so very isolated and alone so much of the time. I've been reading through posts here, while I waited for my membership to get approved, and it was so nice to see that there are other people who understand my daily struggles, as awful as it is that we all have them to face. It's so tiring and lonely when you feel like no one understands you your whole life.

Anyway, thanks for reading this, and I hope you're all having a happy day. :)
Title: Re: Introduce yourself
Post by: AusShep on March 22, 2014, 09:47:02 am
Welcome Roxie, I really look forward to reading your input and perspective on threads.  I've been back in Houston for a couple of years now, good to see another local. 
Title: Re: Introduce yourself
Post by: mitch777 on March 22, 2014, 11:51:05 am
Hi Roxie!

I'm sure you will find terrific support here. Boy, you've been through so much for someone so young. It's nice to hear that despite your challenges that you found a couple of great ways to express your creative talents.

Welcome to the forums!

m.   
Title: Re: Introduce yourself
Post by: BT65 on March 22, 2014, 01:47:47 pm
Hi Roxie, welcome!!   As Mitch said, you have been through hell for someone so young.  My daughter was also born in 1984.  She's HIV-, I contracted HIV from her father after she was born.  But her father died in 1989, the same time I found out my status. 

I can relate to your anxiety, agoraphobia, and panic.  Sometimes when I'm out driving they get so bad I have to pull over.  I'm glad you've found some outlets in your writing and painting.  I would love to see your paintings. 

There are great people here who will be more than supportive.  I hope to hear more from you!

Betty
Title: Re: Introduce yourself
Post by: roxiewrites on March 22, 2014, 07:39:20 pm
Thank you all for the warm welcome. :) I'm so happy to be here.

AusShep, I'm glad to know another local too! I'm actually in Stinkadena, but it's close enough. ;)

Mitch777, thank you. I think if I hadn't been through it all, I wouldn't have so much to be creative with, so in a bizarre way is a messed up blessing. Heh.

BT65, I'm sorry you lost your husband and your daughter her father, but I'm glad to hear she is negative. It's hard for the negative folks in a family with postive people too, I know, from having watched my brother's perspective. And I'm sorry you understand about the panic. Ugh. It's such an awful thing to have to handle, but it is what it is, I guess just like everything else. :)

I am excited to get to know you all!
Title: Re: Introduce yourself
Post by: TJpoz1959 on March 23, 2014, 05:51:03 pm
Hi Everyone,

I am new to this site, but not Poz or being Poz.  I'm 54 living in Maryland and have been positive since 1985 (I think).  Like so many of us here, it has been a long road.  I have been fortunate, despite the losses along the way, and I am grateful to still be standing.  I look forward to getting to know you and to read your stories and share mine.  Until then,

Ciao -- TJ
Title: Re: Introduce yourself
Post by: leatherman on March 23, 2014, 11:52:13 pm
Hello TJ! Welcome to the club, even if it is a club none of us really wants to be a member of. LOL

There sure is a lot around here for you to read, that's for sure. LOL Everybody's got a story and everyone's opinionated about the stuff they care about.

Hope you're doing okay as Spring is supposedly arriving in the States. When the, obviously delirious, weatherman here outside of Charlotte uttered the word snowflake tonight I simply turned the TV off. ;) LOL take care and stay warm until Spring finally does arrive.
Title: Re: Introduce yourself
Post by: BT65 on March 24, 2014, 06:20:05 pm
Welcome, TJ.  Look forward to hearing more from and about you!

Betty
Title: Re: Introduce yourself
Post by: cjmchgo on March 26, 2014, 10:47:05 am
Hey everyone,
My name is Craig, I’m 43, and I’m originally from Grand Rapids, MI. When I was 21, I met an older guy in Chicago and moved to Chicago to be with him, and of course to be in Chicago. He swore he didn’t know he was infected after I tested positive in August 1992, at 21 years old. Maybe he didn’t, who knows, I guess it takes two to tango. I was completely and utterly terrified after my diagnosis. I saw most all my close friends back in Grand Rapids go through horrific deaths from AIDS and I just knew that was my fate also.
Throughout the 90’s I immersed myself in the Chicago club scene. This helped me handle the extreme anxiety I had daily with thinking I was dying of HIV. I also starting going to support groups during this time (TPA) and met others living with HIV which really gave me the strength and encouragement to “live” with HIV. In 1999 I wanted to work with the HIV community in some capacity so I got a job as an HIV outreach worker at Howard Brown Health Center in Chicago where I would work for close to 10 years. Unlike most of my friends, I wasn’t getting sick from HIV and my t-cell count stayed relatively stable and always had a very low viral load  (whenever they started doing VL testing) without medications. It was at HBHC that my life changed drastically. I met people who encouraged me to go back to school and live for my future. I met my current partner in 2006, went back to school and became a registered nurse, and wow, I’m still here all these years later. I do have a little survivor’s guilt and still think about all the people I lost but today is SUCH a different day. I’m currently living in Oklahoma City with my partner. I’m taking Isentress/Truvada and doing really well for someone living with HIV for 22 years.  

Title: Re: Introduce yourself
Post by: BT65 on March 26, 2014, 05:23:37 pm
Hi Cj, welcome to the long termer's section. 

How on earth did you end up in Oklahoma City after living in Michigan and Chicago?  Asking because I was raised in Niles, Michigan/South Bend, Indiana, and have spent a good deal of time in Chicago.  Anyway, I moved to Alabama twice, but ended up back in the South Bend area.  Just wondered what drew you to that area of the country, and if you like it better than the North.

I'm glad you found us, and look forward to hearing more!

Betty
Title: Re: Introduce yourself
Post by: cjmchgo on March 26, 2014, 07:41:53 pm
Hey Betty! I'm very familiar with Niles, South Bend, and Benton Harbor area. I've only been in OKC a little over a month. I moved down here with my partner for a job opportunity. Trust me, it wasn't easy, lol. We will be here for no more than 2 years then hopefully back to the upper Midwest, our home. :) Although, it hasn't been as bad as I thought it would be. I'm more anxious about the storms. How did you like living in Chicago? People either love it or hate it. Nice to meet you Betty. Craig
Title: Re: Introduce yourself
Post by: Theyer on March 27, 2014, 03:34:47 am
This is a very belated WELCOME to all the new folk who have posted , for some unknown reason after 4 years off activity in this forum I only opened the thread yesterday.

It has been a moving experience reading through it.

Anyway it will now be regularly checked for the red new marker.

m
Title: Re: Introduce yourself
Post by: BT65 on March 28, 2014, 08:37:18 am
Hey Betty! I'm very familiar with Niles, South Bend, and Benton Harbor area. I've only been in OKC a little over a month. I moved down here with my partner for a job opportunity. Trust me, it wasn't easy, lol. We will be here for no more than 2 years then hopefully back to the upper Midwest, our home. :) Although, it hasn't been as bad as I thought it would be. I'm more anxious about the storms. How did you like living in Chicago? People either love it or hate it. Nice to meet you Betty. Craig

Oh, I didn't live in Chicago.  I just traveled there for specific reasons, like to go to Lincoln Park Zoo, or score dope (when I was much younger).   I think Chicago has a lot to do, so if someone likes fast paced life, that would be an ideal place.  However, if someone likes a more laid back, easier paced life, then I don't think Chicago would work.
Title: Re: Introduce yourself
Post by: mrtoad on August 17, 2014, 05:27:23 pm
Hello everyone, Lee here.I'm 43, live in the tundra of western Wisconsin.back after 10 yrs in central fl.tested poz in 89 when the guy i was dating started looking bad.from the beginning i had asked if he had recently tested but..well.I don't believe he knew he had it,but hadn't really been tested.I had no idea hiv was so spread out and so many had it at that time. C. Everett Coop is a hero in my book.it hasn't been a easy road watching people die etc.But the alternative isn't so hot either, So I chug along.Just trying to figure out what to do with the rest since I may live after all.
Title: Re: Introduce yourself
Post by: leatherman on August 17, 2014, 07:04:20 pm
C. Everett Coop is a hero in my book
Welcome Toadie! Koop was the best  ;)

So I chug along.Just trying to figure out what to do with the rest since I may live after all.
add "ride more roller coasters" to your bucket list ;)
Title: Re: Introduce yourself
Post by: timmm55 on September 07, 2014, 03:33:43 pm
New to the site, but POZ is old news! LOL

Diagnosed in San Diego 1985 I think, maybe early 86.  I had already lost an ex boyfriend so I wasn't surprised. My chiropractor Joe first noticed my swollen lymph nodes and oral thrush...that was as bad as it ever got.  Joe recommended a holistic approach. It was his best friend, Victor "Tito" that died so suddenly. Tito was a really fit 43, worked out, softball, Over the line, etc. He went into the hospital and never came out. I was 28, but so naive I didn't know what "ICU" was. 

I was dating Jimmy when Tito died. Joe never told me he was POZ and died within a year. I quickly chucked the holistic crap! I "fired" my regular doctor when he said I had 2 years to live.

Later I dated Larry, who was a Lt. Com. Dentist in the Navy. I started the early AZT trials, but the low dose level....based on Navy trials. Only had a problem with a few meds later. Crixivan: kidney stones and "Crix Shits" and Sustiva "dreams". My Ts were always around 700 even then. After several years they started slowly dropping to 400. I started the  the cocktail and they shot up to 1600 at one point.

I've been undetectable even before I knew what it was. Ts are 1000 and all blood work is "normal". The worst problem was cholesterol, but even that is good now.

I was POZ by the second photo! Puts my life in perspective!
(http://i188.photobucket.com/albums/z281/timmm55/7675b99b-1e73-4256-82ad-7d49b4eadc3e_zpsbe557a6d.jpg) (http://s188.photobucket.com/user/timmm55/media/7675b99b-1e73-4256-82ad-7d49b4eadc3e_zpsbe557a6d.jpg.html)
Title: Re: Introduce yourself
Post by: CMylight on March 27, 2016, 01:36:46 pm
Hello all LTS's. I am very happy to have found and be apart of this special forum for LTS. I am at times wondered, if we were ancient and forgotten.No one can tell the days of the beginning better than us who have been around this epidemic for some time. We all know by now HIV/AIDS is no longer the death sentence it once was back in the 80's.Todays generation are bless and benefiting from the struggles of our pioneers.I believe we must stress the importance of education and prevention to those infected as well affected.I am a African American male that has been diagnosed and living with HIV/AIDS since 1985. I was in such denied and unaccepting for a long time. The media said it was a gay white man disease ( GRID ). Little did I know and realize it's not who you are but would you do that leads into becoming infected. The same thing concerning MSM the white gay men were doing, I was also doing the same. I mean ouch!!!! I kept my secret for 16 long years being infected.Today I accept my status and doing very well with treatment. HiV is what I have but not who I am.Acceptance, education, and freedom of expression as set me free today. The journey continues until there is a cure.
Title: Re: Introduce yourself
Post by: BT65 on March 29, 2016, 03:23:20 pm
Hi CM,
Welcome to the LTS"ers forum!  Nice to hear from you.  My name is Betty and I'm one of the moderators.  I've been diagnosed since '89.  Going through a rough patch but I will get out of it (you know how we do sometimes).  Hope to hear more from you!

Betty
Title: Re: Introduce yourself
Post by: harleymc on March 29, 2016, 11:31:46 pm
Welcome CMy.

Title: Re: Introduce yourself
Post by: Wade on March 29, 2016, 11:47:25 pm
Welcome Cm !

 ( GRID )  That's an ugly term we would all like to forget !

Look forward to hearing more from you,

Best,Wade
Title: Re: Introduce yourself
Post by: CMylight on March 31, 2016, 01:28:48 pm
Yes Wade, it is and thankfully it's not used anymore, but it's in our history to remember where came from. Thank you for your response.
Title: Re: Introduce yourself
Post by: Wade on April 01, 2016, 10:55:43 am
Agreed !
When that was used 30 years ago seems like another life time
and I guess now it was.
I place my infection in 84 and was diagnosed on my death bed in 95. 
I have not forgotten , but I tend to keep a lot of those memories locked away.
Again nice to meet you.

Best, Wade
Title: Re: Introduce yourself
Post by: floridartist on May 10, 2016, 08:31:58 pm
Hello, My name is John,  I was diagnosed 30 years ago on May 6th 1986 from the Health Department on Miami Beach Florida, the test back then was called HTLV-III
Back then I had 2200 T-cells, today I am hanging in with 588 T-cells. During the AIDS crises in Miami I got involved with going to many spiritual meetings at a clubhouse called;  Body Positive resource center, It was a perfect setup, they had a gym, art classes, meeting rooms for AA and NA, Yoga, The healing circle, that's where they said to; look for the white light,  but what I saw was a gold light. We would laugh, and many times we would gather with tears as another friend would die, we would make many beautiful AIDS memorial quilts, as friends seemed to die in waves. Then the day came when they had to close the doors of Body Positive resource center as there was only a handful of members left and we couldn't afford to keep the place open any longer. I miss the people I met at the center,  If anyone remembers Body Positive Resource Center, I,d like to hear from you, Thank you.
John
Title: Re: Introduce yourself
Post by: BT65 on May 11, 2016, 07:26:32 am
John, welcome to the forums.  Thanks for sharing. I have never been to Miami Beach but that place you are talking about sounds wonderful and something that would still be very useful today.  I wish we had something like that here.

I do look forward to reading more from you. It's always interesting to hear from another long term'er.  We are a unique group.  Take care!

Betty
Title: Re: Introduce yourself
Post by: Wade on May 11, 2016, 08:35:14 am
Hi John,
I spent those years in Key West and they were indeed bad times .
I never went to Miami back then infact i rarely left the island...lol  No Car  ;)
Sure you will hear from someone, we had lots that would travel down for a
weekend get away and I know that things were similar in both communities .
Welcome to the Forums.

Best, Wade
Title: Re: Introduce yourself
Post by: floridartist on May 28, 2016, 11:47:33 am
Thanks Betty, Thanks Wade, pretty cool, I feel like I got a couple of new connections with you guys.
Title: Re: Introduce yourself
Post by: Wade on May 28, 2016, 12:08:48 pm
You do and Welcome !
Title: Re: Introduce yourself
Post by: konkrypton on May 28, 2016, 06:37:02 pm
Hi guys and gals. I've been on Poz for a few years but do more lurking than posting. I shake my head at all these folks that can pinpoint when they were infected. I was diagnosed in 1988, and hit my "half way point" last year, so I've now been Poz longer than I was Negative. I'm 55, so I've been poz for 28 years this year. I totally relate to Leatherman's story, as I took care of my partner while he got worse and worse. He was 17 yrs older than me and even though we were diagnosed within a month or two of each other and started the same meds, he didn't get any better. We were together 9 years in total.
Our doctor believed in early intervention, so started us on AZT before we were below 300 CD4. My health insurance tried to fight paying, saying that early treatment was "experimental." I had to hire a lawyer to fight them and we won. Meanwhile, my Bobby got histoplasmosis and I had to give him amphotericyn (aka "Shake & Bake" because you got fever and chills) infusions which were hard on him.
Then I had a dentist refuse me treatment because I disclosed my status, and I went to the state of Missouri who said he was in violation of "public accommodation" laws, and gave me a choice of trying to sue for money or force him to educate himself and treat poz patients. I chose the latter.
Then as Bobby got worse, I moved a hospital bed into the living room because he could no longer handle the stairs in our home, purchased just a couple years earlier. The state of Missouri got me a home health nurse who looked after Bobby during the days while I was at work, and I took care of him after I got home at 5:30. I slept in the recliner so I could be close if he needed anything. At his last doctor appointment, the doc said he might have 6 months. He barely made it 3. I watched a teacher with a Master's in English who wrote a novel and wrote me poetry reduced to being able to say "yes" and "no" only. It was heartbreaking.
When he went comatose, we had to take him to the hospital and they put him under a cooling blanket. He had a brain infection, encephalopathy, and only lasted 2 weeks after we moved him. I miss him still.
My second hubby of 12 years I lost stupidly. He took too many pain pills after dental surgery because he hated dentists and was afraid of the pain. He died in his sleep. When I woke to that, I was pretty hysterical. Took some counseling, but I'm better now.
So here I am. Single and hating it. I've spent most of my adult life in a relationship and with an fairly active sex life. The last 8 years have been hard, but my CD4 is 700+ and my viral load is undetectable. I'm in pretty good health, though I've had back surgery (after a fall) and hip replacements (due to osteonecrosis from some meds I was on). My attitude is I'm too damned ornery to die!
Love to you all. We're stronger together.
Title: Re: Introduce yourself
Post by: MarkintheDark on June 15, 2018, 04:39:28 pm
Hello all –

If a rant can be an introduction, to the basics:  I was diagnosed in February, 1993.  My on and off treatments, yes, included AZT, for those who remember the metallic taste/sensation, and combos like whatever those damned chalky horse pills were you had to crush (DDC?).  I got disgusted and quit until 2011 when my absolute had dropped to 35 and I was fighting multiple infections.  That got me into the study for Stribild for several years, bouncing me back to the mid-100s.  18 months ago I started the study for the monthly injectables of Cabotegravir and Rilpivirine.  I'm now steady in the low-mid 200s.

At the time I was diagnosed, doctors gave me 5-7 years to live.  I used the time to refurbish my dream home (an appropriate place, I thought, to die as my neighbor Rob had) and to travel the world before I could no longer do so in 2001.

Without going into detail, it's been a rough haul since.  I've struggled with clinical depression, dwindling financial resources and a dysfunctional HIV support system in this part of the U.S. that generally seems to hire people (case managers, therapists, nurses) who are minimally qualified and who care even less.  At least one (now shuttered) organization had a financial scandal.

I had a heart attack in 2013 (a couple stents), COPD event/hospitalization in 2016, and emergency gall bladder removal a year ago.  This sh#t's wearing me out.

I'll add that I'm sole caregiver to an elderly mother whose dementia suddenly worsened six months ago.  I'm finding out just how badly she's screwed up her finances and I'm trying to untangle the mess.  She's almost no help.  At least she has a great doctor, who I met only the first time this month.  It's just that Mom apparently has never done her follow up appointments, for which I feel I now need to be responsible.  Through her church, she apparently has a couple "surrogate sons," also gay, who've dealt with dementia and keep her in line.  My stress level is often through the roof and it's a conscious effort to maintain MY sanity.

Well, damn.  I wish I could be more perky, if you will.  I have my moments.  But I felt it was more important for me to be completely honest about where I'm at.
Title: Re: Introduce yourself
Post by: leatherman on June 15, 2018, 05:18:04 pm
welcome!
and sorry to hear about your health woes and the issues with your mom.

As I am starting to worry about my own elderly mom as we try to keep meds and housing going for her 101 yr old mother, I just keep saying to myself "isn't it amazing that I'm still alive to have to worry about my elderly relatives." Oh, it doesn't make being a caregiver any easier; but if I had died back in the 90s I wouldn't even be here to worry about these issues.

those damned chalky horse pills were you had to crush (DDC?)
ddI
did you ever deal with liquid norvir or kaletra? such fun. LOL not.
(i was dx'ed a few months prior to you)

I've struggled with clinical depression, dwindling financial resources and a dysfunctional HIV support system in this part of the U.S. that generally seems to hire people (case managers, therapists, nurses) who are minimally qualified and who care even less.  At least one (now shuttered) organization had a financial scandal.
sounds like it's gotta be some place in the South.  :(
(Charlotte's big org crashed about a decade ago from a financial scandal)

welcome again, and remember: perky is over-rated  ;)  ;D
Title: Re: Introduce yourself
Post by: MarkintheDark on June 15, 2018, 07:13:14 pm
welcome again, and remember: perky is over-rated  ;)  ;D

Thx!  At my age I've learned to use perky sparingly ;D
Title: Re: Introduce yourself
Post by: flashdance on June 16, 2018, 11:02:17 am
My doc walked in the office in 1990 and asked me if my will was ready. I swore at that moment that I would never die of HIV/AIDS. Now...I would be proud to be stamped an HIV victim upon my death.

Once I sent letters to my family to tell them I was gay and poz...I was ready to face the world and was on AZT immediately. Next my life was saved by wonderful Crixivan.

Living in Chicago...living with HIV was simple in the 90s. My parents health started to falter so I went home for parental care...so back to the roots in farm communities of east central IL.

Citified...but then back to my rural roots....I wonder if the push for equality has benefited all gay men and women. It is easy to see in a liberal community (usually with 100000 population) the growth of a life to live as one wants...but still having to hide and watch the chasms deepen between differences in non open minded communities.

And speaking of family...since I informed by letter...I thought I was able to give back love and family support by picking up the baton to handle parental care. Now my loving accepting parents have passed....and of 3 sisters and myself...I have literally had to state that I only have 1 sister...while 2 other sisters treat me like dirt and diseased with no trust in anything concerning my high standards of trust and truth...

61 years old....
Title: Re: Introduce yourself
Post by: Dfwguy on October 16, 2018, 09:07:58 am
Hello,
My husband and I are both long term- 30+ years, married for 22 years . And amazed we are still here. So glad I joined this forum, as I have heard from so many newly diagnosed - who assumed HIV was an immediate death sentence. We are happy to be living proof as ‘ old timers ‘.
Title: Re: Introduce yourself
Post by: OzPaul on October 18, 2018, 03:19:12 pm
Hello and welcome to the forums !
Title: Re: Introduce yourself
Post by: em on December 03, 2018, 01:59:49 am
This may give away who I am but who reads this stuff besides everyone in the world who has HIV ?

My life right now I have nerve polisy in my eyes . it makes double vision so please pardon any type os the keyboard is very hard to see. plus were I am at is 1 in the morning right now. was just watching freeform and they have contest were the grand prize is trip to disney for four. wo ho like we have a chance. I tried to log in but my wife had an acount under my email from 2006 were she had entered for the same prize ?

My wife works in preschool. she got her bachelors degree in business  managment and preschool education. she worked for a preschool for about ten years and found herself the manager. but when she tried ot hold the staff to task. they  rebeld and had taken their complaint to the owners and got them to fire her . so she went into early intervention for about five years. doing evaluations of toddlers for any help they might need. now she works for another pree school were she has an asistent that she  says is a god send. She has the energy to keep up with the children while my wife makes sure the class has age apropret learning wile still fun for their age.

just day dreaming about the fun and joy an expenses covered  trip to disney would be for our two teen agers. maybe some day right My wife is palanning one but the buget trip we went on a few years ago we could not buy the ez pass ticket so the lines were very time consuming. I am only good for about four hours a day before I just can not go on anymore. I do not know if it is the HIV damage from having AIDS way back when or just getting old. my wife and i are both in our ffites.

  sorry about my word usage and grammer and spelling a bit of fog I live in do to the sych meds they have me on. everyone tells me I am unbareable while I have manic epsodes. But for me they are glorious I do not have a problem with them but everyone else seems to

My wife wants to go to universal for the Harry Potter part of the park. but at a hundred dollars a park and ofcourse to see the entire Harry Potter thing you have to buy both parks and the ez pass to that. each park is hundred for the tickets and 75 for ez pass it adds up fast. we splurged and went you should have seen the veder at the park wen we purchased two cheros and split them among us. we had one ticket to one park that was to us a large chunk of change at 400 $ . my being only able to go for about four hours? that's life right you have to play the hand you are dealt

day dreaming does not cost anything. Seeing my kids in florida the last time becsae I was inthe service we stayed at disney village in shades of green the veterans hotl at a hundred dollars a night. that was not bad for few days

do not get me wrong I have a family a home and justenough maony to pull it off. we do not live the money is no object life style but we get by

I have a bachelor of science in information system science wiht a minor in computer science. granted from a liberal arts university but stil lit is an acomplishment

teen agers and the electronics that have such a large part of their entertaniment rneeds . they are expensive but the alternative of them sitting crying all the time

sorry to write so much

that is my intruduction

after writting for a long time on this website and its predessor

wish me luck on wining the prize even if I do not the thought of my children in disney wihtout us telling them " we can not do that or go there because it cost extra.  when we went we brought our own lunches inthe car. I told my wife and kids ot stay away from the water around the park because  of aligators this was  few years before that child was taken by that gator.  My wife had said they will not get this close to the parking lot . I said I used ot live in florida and yes they do cross parking lots.

please pardon me for writting so much and sweet dreams

Me I will dream of winning that prize and how happy it would make our children.

even if it is only a dream
all the best to you


just bought a new computer and have not figured out how to get my spell shecker to work and hte grmamer checker I had on the other computer

maybe the older computer as slow as it was might be better to use

EM


I have not go the meaning full blurb thing down and may never ge tit right  I have the feeling long posts are borring but well it is what is on my mind to bounce aorund thoughts and meander on I will try to do better and keep them short in the future

but this is what I would like to share with you

what does this have to do with HIV some times putting HIV aside and not live by the virus and think of something else might be a worth while endevor. HIV has consumed most of the past thiry years of my life. just was intruducing who I am not what the virus has taken.

It is now 2 in he morning

I hope you peace and love and great day dreams