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Author Topic: What's it really like?  (Read 3505 times)

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Offline MoltenStorm

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What's it really like?
« on: July 17, 2007, 06:08:57 PM »
I don't know if I should keep this in Living With or put it in Long-term Survivors. However, it applies in both cases, so I'll leave it here.

I just finished reading Lis' post about stopping her meds, and I read about the time she and dad were having. I couldn't help but have a wave of emotions come over me. I know I'm only two years in, and right now, it's the rosey "one pill a day, and everything's fine" attitude for me, but reading that post brought up an old friend - Death, and that one day, I have a date with him.

I would ask that you all, who are long-term survivors, be honest with me. Don't sugar coat it. What do we newbies have to look forward to in the way of what we're going to go through as the years pass - as 2 years becomes 5, and 5 becomes 10, and 10 becomes 20, etc? Will there come a day when meds won't help anymore?

Be real.
"Love is always patient and kind. It is never jealous. Love is never boastful nor conceited. It is never rude or selfish. It does not take offense and is not resentful. Love takes no pleasure in other people's sins, but delights in the truth. It is always ready to excuse, to trust, to hope, and to endure whatever comes." - 1 Corinthians 13:4-7, adaptation in A Walk To Remember

CD4: 555 / 29% / Undetectable - 7 Nov 2006
CD4: 555 / 29% / Undetectable - 5 Feb 2007

Offline MOONLIGHT1114

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  • Cheech 2.2.94 - 4.23.10 We miss you so much!
Re: What's it really like?
« Reply #1 on: July 17, 2007, 06:49:49 PM »
I was diagnosed on 12/22/93, I had just turned 24.  I prob seroconverted in 92.  Lost my husband to AIDS in 96.  I was on AZT for a bit, then Fortovase from 96-02, Sustiva/Zerit/Videx from Oct 02 - Oct 05, and now Sustiva/Truvada from Oct 05 to present.  I have never had any major illnesses, I am also diabetic and on insulin, have been for 26 years.  My health is very high maintenance, I have neck and back probs too....and despite all of this, I still find joy in life.  Don't be afraid, although I understand the black cloud looming in from time to time.  I really have been fortunate and the only struggle I have is with relationships and being lonely, so its mental, not physical.  Everyone is different in how the virus affects them.  I hope my strength and willpower can be an inspiration to you today.   :)

Cindy
HIV+ since '93, 1/12 - CD4 785 and undet.   WOO-HOO!!

Offline J.R.E.

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  • Joined Dec-2003 Living positive, since 1985.
Re: What's it really like?
« Reply #2 on: July 17, 2007, 08:09:17 PM »
Well lets see...


22 years positive, As of this coming October, will be on basically the same regimen for four years.

Neuropathy, that  ( at times) can keep me off my feet. The neuropathy forced me to change jobs within the same company back in 2004. I am glad a position opened, so I could continue to keep my health insurance. I still work everyday. Fortunately, I am very seldom sick, and never miss any time from work. I hope that can continue for a while. I think in the past 4 years, I have only missed 3 days from work. I fell the need to push myself constantly, but I also know when to slow down.


I have constant tinnitus in the ears. Issues with HPV which at the present seem to be under control. Skin issues, which may or may not be completely associated with HIV. I am also 55 years of age, so I am at a point in my life, where I have to deal with the normal aging issues also.

Appetite is still very good. Don't have the shits. Can have days where I have great energy levels, and days, where I just want to stay in bed. sometimes some mild to moderate muscle aches, and muscle fatigue.

Don't have issues of depression. So I don't take any other medication at this point, except for the antiretrovirals. I don't smoke. Don't drink,( except for a few around the holidays, alcohol doesn't agree with me any more in large quantities, two drinks can wipe me out).. try to eat healthy as often as possible. My biggest problem right now is trying to get more exercise in.


Overall, considering where I started from in 2003 with 16 t-cells and a viral load of 500,000, and 22 years into HIV, I think I am doing OK. I keep busy, I try to keep mentally active, although brainfog, can sometimes be an issue. ( I find myself writing notes quite a bit so, I don't forget things)

There's a lot more to what I have stated here,...There are some dark days when I occasionally reflect in the past, And wonder why I am still around, when so many others are not. I am just grateful for each and every day! Try to keep a good sense of humor. You got to !




Take care-----Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline zachysmom

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Re: What's it really like?
« Reply #3 on: July 17, 2007, 11:02:02 PM »
Oh Sweetie,
Life can be good, it's the little things that make me smile and cry, but I have to admit, sometimes I like it when I'm angrered, and feel frustrated, because at least I feel something and that makes me feel alive, at least for that moment.
I have been living with this mental torture for 13 years now. When I was first told I had the virus, I just brushed it off, I was almost in denial of it for almost, well up to the  point of having my child. I mean I knew I was positive and I saw the doc regularly and did my labs, i just never thought about it much, just went about my business, and was very optomistic about the whole thing. In fact my doc at the time was like "you really have a great attitude about this". I believe that's what saved me from having to go on meds for so long. I didn't really start meds untill I got pregnant, and have stayed on them after delivery. After having my son , my thought process really changed, I worry alot now, about how am I going to keep alive? what will happen to my son after I'm gone? And the worst one, how am I going to die,will I just collapse in the store, at the DMV, at the car wash?
I think Moonlight was right it affects everyone differntly, you have to find a way to deal, any way you can.

keep posting,
much love,
nicole
From Russia with love,
Nicole

Offline Carolann

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Re: What's it really like?
« Reply #4 on: July 17, 2007, 11:03:08 PM »
well, I have not been living with it for such a long time, but I feel tired a great part of the time, have had anemia, bad allergies, and depression. Some would say that is most people in the world. But I have noticed the tiredness is much more severe since I my cd4's dropped below 300.

CA

Offline RapidRod

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Re: What's it really like?
« Reply #5 on: July 17, 2007, 11:40:07 PM »
Being a LTNP from 1984-2005 my life was good. Now April 2005-present, I've had my ups and downs. I just recently took care of the CFS but I still deal with low CD4s and high histo levels, which I hope has improved at my next labs in Sept. I've only been in the hospital twice so I count myself very fortunate. I really don't have any complaints except I wish I could go back to work, which is not ever going to happen. 

Offline joemutt

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Re: What's it really like?
« Reply #6 on: July 17, 2007, 11:52:11 PM »
I can only give you my personal story:
10 years on meds, stopped Crixivan after a few years (heavy on the kidneys)
stopped AZT last December (tired, mild lipo) now on Viramune, Viread and 3tc,
I have not had major medical problems, I work full time,
I think there's no general "what's it really like" just a lot of different individual stories,
Sometimes I wonder about tomorrow but I always hope for the best. :)

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: What's it really like?
« Reply #7 on: July 17, 2007, 11:59:50 PM »
OK, well, I tested positive July 1985. (Ray and I are going to share a cake one day just because we deserve it!  ;) )

It is all so different for each person. What you may experience will undoubtedly be totally different from what I did.

My first doc thought I was infected in late May or early June 1980, but I have no definite proof of that and it really doesn't matter.

I didn't see a doctor about my HIV for seven years after I tested positive. Why bother?

There was nothing anyone could do anyway. I was told by the doctor who gave me my positive result that I had two years to live, more or less, so start making preparations for the end.

More than once I thought about pulling a Thelma and Louise (long before they did it), especially as I watched how people died. It was very ugly and I didn't want to face that.

I got a swift kick in the butt from a friend in 1992 and started seeing a doctor. She was a delight. I did my TC4 tests regularly (now called CD4s) and they stayed between 600 and 900 for years.

I had my first viral load done in July 1995, prior to the test being approved as standard of care. I had an aggressive doctor.

My CD4s started dropping in late 1995 and the viral load began rising. Finally, in March 1996,  when my CD4s dipped in the lower 400s and my viral load was somewhere in the 50,000 to 60,000 range, I stared meds: Saquinavir, Epivir and AZT. I took 14 pills a day.

I suffered through two months of Saquinavir (the original formula, not the one now marketed as Invirase).  I could handle force-feeding myself with heavy fat meals, a requirement for the original Saquinavir. I didn't mind having to take it with at least 8 oz. of grapefruit juice, also a requirement.

What I couldn't handle was what was happening at the other end.  :(  The projectile diarrhea became so explosive I couldn't work.

So, I told the doc it just wasn't going be something I could continue with. She immediately switched me to a brand new protease inhibitor. It had only been on the market a few months and there were waiting lists for it in some areas.

It was Crixivan. I stayed on the Crixivan, AZT, Epivir combo for the next 11 years.

I switched off the Crixivan about 10 weeks ago and began Sustiva and Combivir (yep, still taking AZT and Epivir). During the past 11 years, I have experienced a slight degree of AZT-induced anemia, but so slight it was never a concern. I do have those funny shaped red blood cells, but they have been that way for a decade now with no real consequence.

Three or four years ago, I found myself with Crixivan-induced kidney sludge (read kidney stones).  Not fun, but managed to get them under control by upping my water intake to 64 ounces a day, plus whatever else I drink. (Read: I pee a lot!  :D )

I have had some degree of peripheral neuropathy for years now, but nothing I can't usually handle. Its worst when my feet are hot. Sometimes its like walking on shards of red-hot glass. Other times its just shooting pains like someone is shoving a needle through one part of your foot or another.
Still other times it is just generally uncomfortable and the dull ache, like that experienced the day after you exercise and have muscle aches, is constant from the knees down.

But nothing unmanageable. I don't take medication for it and won't unless it really becomes unbearable.

The PN increased when the doc put me on a statin for cholesterol. Seems the statin and the Crix didn't like each other and it caused me no end of muscle aches, neuropathy and, as I found out later, nearly a heart attack. Luckily, I stopped in time and no real longtime effects. The neuropathy returned to a more manageable level and the rest of the symptoms faded after I ceased the statin.

I have had lipoatrophy for a number of years now. No biggie, I exercise regularly and people thought I intentionally kept my fat at 8 or 9 percent of my overall body mass.

But, unfortunately, earlier this year, I started developing lipohypertrophy. That led to the switch to Sustiva.

But, Sustiva isn't playing nicely with me and my doc and I are talking about switching me to something else.

Anyway, that's my long, drawn out tome to this point.

What I have seen, experienced, etc., will be very different from what you will see, experience. At least I hope it is.

There is no way to predict the future. We just have to deal with it as it unfolds.

But, hon, remember, you aren't alone. Even though our journeys are different, we are all on the road together.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Life

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  • Member 2005
Re: What's it really like?
« Reply #8 on: July 18, 2007, 12:21:33 AM »

But, hon, remember, you aren't alone. Even though our journeys are different, we are all on the road together.

Amen!

Eric

Offline Jacques

  • Member
  • Posts: 171
Re: What's it really like?
« Reply #9 on: July 18, 2007, 01:15:05 AM »
Hi,

 Well, I'm  HIV  positive since 1987. I am 56 yrs old (please don't reveal). Perhaps am I lucky, or  managing well but I don't see much difference between now and before.

No meds for the first ten years. No HIV related problems except a few Kaposi spots in 1996 that vanished when I started meds in 1997.
Mild to moderate side effects with meds (sore stomach, bloating, fatigue etc.)  Physically I have'nt changed much (thanks to Oil of Olay  ;D )

But that does'nt mean I am living a happy life. Long periods of unexplained sadness, fear to get involved in  love relationship and  lonelyness would describe my life since I have been diagnosed.

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline woodshere

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  • ain't no shame in my game
Re: What's it really like?
« Reply #10 on: July 18, 2007, 09:41:50 AM »
It is all so different for each person. What you may experience will undoubtedly be totally different from what I did.

This is the key.  I don't know of anyone who tests positive today that is told they will be dead in two years as so many were told in the early years.  Unfortunately for most it was true, thank goodness it was not for Mark and others who survived that horrific era.  Their experience and reminders of what the beginning was like are very important for those of us just starting our positive journeys. 

But the fact remains the science of HIV has changed drastically over the years. In the early 90's no one had ever heard of HARRT and now people are down to taking one drug a day, who knows what might happen next year or in the year 2012.  I think worrying about how long my meds will work, what long term side effects will I have, when will I start looking like I am positive is truly futile.  I am concerned about the side effects that are happening with my cholesterol or liver functions and take appropriate action. But almost everyone needs to be aware of what's going in their bodies and for me being more conscious about my well-being is one of the positive side effects from testing positive. To say I never think about death would be a lie, but I think about it no more now than I did before I tested positive.

I realize that sadly for some nothing seems to work to suppress HIV and for others they suffer greatly, I hope that something develops soon that will help them.  My journey currently is different from theirs, it might end up taking me there who knows.  If that time comes I will have to deal with it then.  For now though I think the key for me is realizing that HIV is different for each person and I need to be proactive in my health and concentrate on doing things that will keep me well.  What happens then is really out of my control.

Now I need to do a better job of practicing what I preach and quit smoking,
Woods

"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline GSOgymrat

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  • HIV+ since 1993. INTJ
Re: What's it really like?
« Reply #11 on: July 18, 2007, 09:44:10 AM »
I would ask that you all, who are long-term survivors, be honest with me. Don't sugar coat it. What do we newbies have to look forward to in the way of what we're going to go through as the years pass - as 2 years becomes 5, and 5 becomes 10, and 10 becomes 20, etc? Will there come a day when meds won't help anymore?

Be real.

The reality is nobody can tell you what your journey with HIV will be like. There are too many variables.

As far as my experience here is my un-sugarcoated story. I've been positive 14 years and I can tell you things are much better now than they were. When I was first infected my immune system went down very quickly and within a year I had an AIDS diagnosis. The doctor said I should go on disability and get my affairs in order. I was stunned but also didn't completely believe him because even though my labs were crap (VL>500,000, low CD4) I felt fine. I didn't go on disability and jumped from clinical trial to clinical trial to get meds because I was uninsured. Then when I became insured and got on a regular regimen my labs improved. Over 14 years I have had various medical issues: pneumonia, thrush, neuropathy, kidney stones, multiple corneal infections, chronic digestive problems, high cholesterol, hyperlipidemia, etc. Sounds scary but remember this is over 14 years. I've taken all these problems in stride, taken my meds, gone to my doctor regularly. Honestly, after year 4 or 5 I realized I wasn't going to die any time soon and I stopped thinking about HIV that much.

Oh, a bad thing I did in the early years was charging too much on credit because I thought I wouldn't be around that long. Very bad idea. This is back in the days when viatical settlements were popular. When your not dead they expect you to actually pay the money back and that took years.

The only thing that has ever got me down is lipoatrophy. Lipoatrophy was difficult for me personally to deal with because 1) it doesn't get better, 2) you no longer look like yourself and 3) it advertises to everyone there is something physically wrong with you. I haven't told family and friends I'm HIV+ and being confronted all the time, sometimes by complete strangers, about my health just kept reminding me I'm HIV+. I've had to create and maintain elaborate lies which are mentally draining. Since I've had cosmetic treatments I don't get "are you feeling okay" all the time and life is much better.

Until I got lipoatrophy HIV was not a big deal for me and certainly not the worst thing that I've ever had to deal with. I didn't seek out this forum because of HIV, I did it because of lipoatrophy. Now that I have that under control I'm back to not thinking about HIV that much anymore. I'm planning on retirement and just enjoying life.

The things that have helped me with HIV are remembering:

1) It's just a virus. It's not mystical and there is no more purpose behind it then that flu I got last year. HIV doesn't make me special.
2) I screwed up by getting infected-- get over over it. People screw up all the time. They drive while talking on their cell phone and crash. They get pregnant by accident. I'm not perfect and neither is anyone else.
3) Labs don't mean that much. Doctors don't always know what they are talking about. I'm responsible for my own healthcare.
4) Just because I can handle my HIV infection doesn't mean other people can. Unless I'm having sex with someone or bleeding all over them it's none of their business.

Offline redhotmuslbear

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Re: What's it really like?
« Reply #12 on: July 18, 2007, 12:59:23 PM »
I think worrying about how long my meds will work, what long term side effects will I have, when will I start looking like I am positive is truly futile.  I am concerned about the side effects that are happening with my cholesterol or liver functions and take appropriate action. But almost everyone needs to be aware of what's going in their bodies and for me being more conscious about my well-being is one of the positive side effects from testing positive. To say I never think about death would be a lie, but I think about it no more now than I did before I tested positive.

Woods,

Your bring up something that I don't believe HIVers ponder or act upon enough:  the longevity of their drug regimens and being proactive in avoiding an emergency switch.  Being a probability and statistics dork, I started playing with mathematical models of viral mutations that confer drug resistance almost from the day I received my ELISA results;  and by the time I was on Crixivan, AZT and 3TC, I had developed a reasonable objective of changing meds proactively at least every 18 to 24 months to (1) beat the ever-changing virus, (2) minimize the duration of adverse side effects which I might elect to tolerate, and (3) keep up with the newest and best pills.... being a fabulous Leatherman, I must havve the latest toys!  Having seen dozens of friends start single- and double- drug therapies that failed within a few months, I felt there was ample evidence that I would be making the right choices.  My HIV doc at the time felt I was over-thinking, but then again he felt that a patient thinking was dangerous, period (why I see another doc in their practice now).  My primary felt that the approach was novel and, if nothing else, not harmful.

I'll also note that you wrote something which disturbs me to see uttered here "....when will I start looking like I am positive."  I can only imagine the memories and apprehension going through your mind as you tried to interpret your thoughts, but WTF does an HIV-positive person look like??!!  Whether intended that way or not, it rings of a stratification of HIVers with those who hava had the most wasting or the most damaging effects of lipodystrophy grouped in a class of untouchables..... like people who jump out with "I'm a healthy poz...." as if to differentiate themselves from those "unhealthy poz" people.  We've all got the same bug, and that's what matters most.
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline pozattitude

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Re: What's it really like?
« Reply #13 on: July 18, 2007, 01:38:36 PM »
OK, well, I tested positive July 1985. (Ray and I are going to share a cake one day just because we deserve it!  ;) )
Mark


You better watch out Mark...I will catch up with you  ;)


Molten,
I've been on meds for 10yrs now.  My only complaints would be peripheral neuropathy and the nausea, but I can handle them and it has never been too bad to the point that makes life miserable.
I don't drink ( I can't anymore, it makes me so sick) and that is a good thing.  I don't use recreational drugs, i do use marijuana (which I do not consider a drug, it is medicine that keeps me from feeling sick from my HIV meds).
I feel very lucky that I have not had any complications so far.
My biggest concern and what keeps me paranoid is the HPV.  I had anal dysplasia because of it and I have to get checked every 6 months now.
I am optimistic about this.  I don't know about a "cure" but I do believe that we can all live our lives pretty normal and I expect to get old.

Rich
(who never though he'd say he wants to live to be a 100 yr old troll)  ;D
POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

Offline StrongGuy

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Re: What's it really like?
« Reply #14 on: July 18, 2007, 04:13:37 PM »
My view is it's essential to understand what others have and are  going through, but every experience is very individual -- especially with major treatment advances in the last 11 years that have changed outcomes for many -- so I don't compare apples to oranges. But, here's my experience in a nutshell:

- Diagnosed almost 8 years. l focused on the negative and fell into a bad bad depression. Had others around me who wouldn't give up on me and literally dragged me to get help. Got treatment (combo of meds and talk) and finally came back to my old self.

- My numbers were getting close to the "think about starting treatment" point. Took the plunge: Combivir and Sustiva. No sides, but numbers were taking longer to go undetectable than doc was comfortable with so switched combos to Kaletra and Combivir.

- Kaletra gave me some mild, but manageable, wave of nausea after each dose. Stayed on it until I was undetectable for three months and then new doc recommended I switch to Sustiva/Emtriva/Viread (what's now Atripla). No sides.

- Working and living. Made some good poz friends and have a sometimes annoying (but lovable) boyfriend. Only surround myself with people who focus on success, not doom. Had to cut a few people out, but am better off for it. Just taking it one day at a time.

I plan on being around for a good while. If it's not in the cards, so be it. In my view, life is a journey, not a destiny. I try to be vigilant and hopeful and I don't waste my life worrying -- because what you focus on just expands and can consume you.

Just my experience and thoughts. As many of the comments have stated, no one can predict your future from their experience. HIV is very individual.

:)
"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline pozniceguy

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Re: What's it really like?
« Reply #15 on: July 18, 2007, 06:25:26 PM »
You asked a question that everyone at least has thought about..whats going to happen to me????   as many have said already there are a few common occurrences but almost everyone has some unique issue to deal with....  your final question ..will death visit me/// yes of course but with the current treatments it will probably be from some other cause....maybe old age!!!I think you have scanned enough of the post to see that there are people from just diagnosed to very long term survivors and a few non-progressors....my case was similar to several others...probably actually infected in early 80's diagnosed in Jan 1994....went through about 2 yrs of intense treatments for all sorts of things...PCP, MAC, various infections, severe Lipodystrophy,  but I am older than just about everyone on this web site and think I still have a good 20 yrs left in me......a good attitude and some reasonable care of your physical and mental self will take you a very long way...as you have heard many times here   alcohol..smoking..and "recreational" drugs will surely shorten your time on earth....  above all live every day and enjoy whatever is available to you...

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline J.R.E.

  • Member
  • Posts: 7,099
  • Joined Dec-2003 Living positive, since 1985.
Re: What's it really like?
« Reply #16 on: July 18, 2007, 06:47:35 PM »
OK, well, I tested positive July 1985. (Ray and I are going to share a cake one day just because we deserve it!  ;) )




You can bet on that Mark !! ;)



Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 6/4/14,  t-cells are at 423, Viral load <40

 Current % is at 13% 

  
 62 years young.

Offline kellyspoppi

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  • Posts: 153
Re: What's it really like?
« Reply #17 on: July 18, 2007, 09:27:49 PM »
molten storm,

like everyone else has said here, none of us has a crystal ball, but what we do have is our minds.

upon experiencing a similar depression to that of stongguy, after my fiance passed away in 1989, i went the same direction and got myself some serious help. this was 5 years after my initial infection in 1985. :o

here's where we all agree. there is no predicting which journey will be ours, but our positive mental attitude can make all the difference in the world.

i have continued to work these past 22 years of having hiv, and i didn't start meds until 96 when PI's came into our life. up until that point i would say my attitude was one of running as fast as i could to stay ahead of the virus. once i had to go on meds, reality set in and i realized for the first time i was in a battle for my life.

it was then that i decided to do everything i possibly could to take back control of my life, to get as educated as i could about my treatment and to learn how to advocate for myself. i got connected to those plwa's who were active advocates in my community and joined my ryan white care network, the community advisory board of my aids treatment center, and the board of directors of my aids service provider.

here in new york we have what is called the leadership training institute (LTI), which provided workshops on how to be more involved and more educated on how the system works. they also provided me with training on how to do legislative office visits so i could tell my story to our congressman in a constructive way, advocating for increased money for aids services and our ADAP program, which in my case, is my lifeline to maintaining a long and healthy life.

self empowerment is one more aspect of maintaining a positive mental attitude, and for whatever the reason, to this day i have never been hospitalized.(WHERE'S THE WOOD!)

except for a 1 year drug holiday, when i held out until my cd4's got as low as 350 and my virol load to 100,000, for the most part since taking meds i have maintained a cd4 of over 600 and virol load (presently undetectable for 3 years) under 5000. i am on my 2nd regimen.

in the last 24 hours on this website alone i have read about how pediatric dr's ended a trial  after just 8 short months stating that starting young infected patients on meds asap after diagnosis is the best form of treatment. on sean stayleys podcast i listened to dr anthony fauci say that the research dollars at NIH are working hard to continue to develope an endless stream of meds for us with the fewest number of pills to take, but thoughts of a potential cure seem distant memories at best. our surgeon general is being silenced by our president  for criticizing abstinence only policies, despite overwhelming evidence they don't work.

as an aids advocate, these revelations pissed me off to the point i wrote "views" to this site to let off steam. although, in reality, my own past experience with this disease makes me question the validity of whats being preached by dr's all across our hiv/aids battlefront, and how much of our treatment is being ruled by the drug companies who are amassing huge profits as infection rates continue to rise, thanks to the failed strategies of those who run our country.

ok, so i went a bit off track there, but here's my point. there are some LTS's who have posted here telling you we went 10 years without having to take meds (mainly because they weren't around) and they were not getting sicker. cd4 was the only measurement for those first 10+ years. many of us had no side effects to deal with, and no lypodystophy. we had a sex drive and a body worth tanning. no rashes, no diareha, and no neuropathy.

now i would never wish to implicate here that i am displeased with the fact we all now have life saving meds. but what i do question is why the sudden need for every single newbbie to have to take meds as soon as they are diagnosed. to me it seems like when dr ho's theory went bad, the next best thing to save face was tell everyone that by starting meds asap, you would save yourself less damage to your immune system, thus provide yourself with a longer life.

just as in all claims of life, there are 2 sides to every story,  i would say a 10 year period drug free with plenty of options to choose from sounds a hell of a lot better than what's being professed as the current standard of care. but that is just my opinion and my name does not have an MD after it.

molten, i have no way of knowing what length of time you have been infected or what strain of virus you have. if you were infected with a strain that was resistant due to your partner already taking meds, they say that can be more aggresive than the one i was infected with.
one things for sure, a genotype test through your hiv dr can help determine if this is your situation.

as others have mentioned here, being educated and involved in your treatment will help you to make a far more informed personal choice when it comes to your treatment. close monitoring of whatever your treatment choice is allows you the best chance of success for a long and healthy life........ and live positively with your hiv! good mental health is just as important.

i wish you a long and healthy life.

kellyspoppi 

Offline DavidinCA92284

  • Member
  • Posts: 45
Re: What's it really like?
« Reply #18 on: July 18, 2007, 10:09:42 PM »
I agree with many of the posts here, especially the one discussing Lipoatrophy.   But one of my biggest concerns since being diagnosed HIV positive in 1987 has been trying to determine whether my "concurrent conditions" are AIDS related, or just things that would have happened anyway due to getting older.

For instance, I was first diagnosed with HIV disease in my early 20s.  However, I have always been one to adhere to a good diet and exercise program.  Difficultly #1 is whether my now joint pain is attributed to HIV/drug therapy or whether the older I get, the joint pain is a natural part of having worked out for 20+ years.

The same thing can be said about Lipoatrophy.  Sure, some HIV Drugs and having HIV contribute to Lipoatrophy and I probably wouldn't have lost all my body fat if I didn't consume the meds or have HIV.  But, loss of body fat can also be attributed to having worked-out for many years with a low-fat diet and getting older many people loose their body fat in similar places. To what extent Lipoatrophy from HIV/meds has caused disfiguration, versus getting older, is something I can only make from assumptions based upon mounting medical evidence.

This worry or concern of whether AIDS/HIV has produced conditions, or whether I would have gotten similar things due to aging is a mind game.  I'd like to attribute everything I get in the future to AIDS/HIV . . . like recently when I was told I had high cholesterol and needed to be on Lipitor!   Is this cholesterol thing something I "inherited" or is it something that all of a sudden my body has decided not to process lipids the same way it did just a few years ago.   Is this change due to the drugs I am on, that my metabolism is completely different, or that long-term survivors develop cholesteral problems just because!?

This extra drug requires monitoring of liver functions even more closely than just doing HIV meds alone.  It's of concern because so many medication, including the new bi-Polar meds seem to tax the Liver......no drinking alchohol for me!   That means that I have to deal with HIV and other issues with the help of the friend - a drink - a beer . . . not like I've ever been a drinker, but it would be helpful I think if one time I could "let my hair down" and just drink myself silly and piss away my troubles.  I can't even do that.

So, in answer to your question, how the future will look.  It will look like only how your body is able to deal with the issues of being a long-term survivor and an older human being.  The question will be which problems are from HIV and which are just from living and would have happened anyway.
-david

Offline Bucko

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  • Posts: 1,947
  • You need a shine, missy!
    • The Spin Cycle
Re: What's it really like?
« Reply #19 on: July 19, 2007, 01:00:19 PM »
Moltie-

I have posted long thread topics before about how HIV has changed my life, the latest being about work:

http://forums.poz.com/index.php?topic=13759.0

I think the bottom line here is that living with HIV longterm means that one's survival instinct kicks into overdrive when required, and living with Post-Traumatic Stress Disorder the rest of the time.

Brent
(Who, like Gloria Gaynor, will survive)
Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Blathering on AIDSmeds since 2005, provocative from birth

Offline naftalim

  • Member
  • Posts: 102
Re: What's it really like?
« Reply #20 on: July 21, 2007, 12:29:33 AM »
You know, one of the positive angles to your question is the fact that you and most of us here nlw ask that question. Prior to diagnosiis, I imagine that most of us did not spend a lot of time worrying about death, quality of life, where you've been in life and where you are going in whatever time you have left. You often hear about people having a near-death experience who use it to positive effect in their life. I think to myself, hey I made it to 52, pretty good so far. So, it would be nice to have a less traumatic way of having a wake up call but there it is.

As for what to expect, as someone who was diagnosed 2 years ago, there is a process that seems to be consistent and natural. Shock, denial, fear, acceptance, empowerment. Then you realize that you are not dying right this week, so you better prepare for the future cuz you will be living it. On the meds side, I think that many will tell you that fatigue can be an issue, but you adapt. Certainly, relationshps can be difficult, but as can be seen on these forums, they do exist.

So, to summarize, to a significant extent your life will be what you make of it.

Offline Oceanbeach

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Re: What's it really like?
« Reply #21 on: July 21, 2007, 01:16:43 AM »
I don't really qualify as a long-term survivor because I was diagnosed in 1994.  During the first two years, I had the chance to attend several conferences through APLA and The Center in Long Beach.  The topic was usually about new treatment and new meds on the horizon.  It was in this group of speakers, I chose my first ID doc.

Being hospitalized with PCP in 1996, I was put on some of these new meds.  I was taking 30 pills every day and remained sick for at least two years.  On many occasions, I have had unscheduled bowel movements with about 3 minutes warning.  I only went to places, I could walk home and always took alleys.

I went for a few years with PN w/foot drop.  The community clinic where I lived had no ID doc and they were baffled by PN.  I have walked up and down the hallway with every doctor, the P.A., the Chiropractor, and finally an EKG, MRI, and Physical Therapy.  Nothing became of any of this and if I needed anything in town like mail, food or anything, I had to walk and every step was in screaming agony.

So after 11 years, I am getting to feel really good and want to go back to work.  For the past two years, I have been active in every commission, HIV related committee and task force.  It has been really hard work but after so many years of the potential employer alway finding a more qualified applicant, I have opened up my own business, in competition with my former employer and things are going really well for me.  That is my experience and I had to make it happen myself.  For now I win and who knows what to expect next year?  Have the best day
Michael

     

Offline david25luvit

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  • Posts: 1,409
  • Member since March 2005
Re: What's it really like?
« Reply #22 on: July 22, 2007, 09:59:50 AM »
Molten....

                 It's only been five + years for me but my David was + sixteen years before he died and I think I can say with all certainty that it
depends upon you and your particular situation.  There are so many variables that go into a life....especially one where HIV is a factor.  These
days the outlook is much more agreeable...much more so than twenty years ago.  Thanks in no small part to some new medications people
are definitely living longer and fuller lives....who's to say you won't live to be an old man.  There are no pat answers...like everyone else who lives
on this earth...the future is an open book with pages that haven't been written yet.  Live for today and enjoy all that life has to offer...worry
about tomorrow when tomorrow comes.
In Memory of
Raymond David McRae III
Nov. 25, 1972- Oct. 15, 2004
I miss him terribly..........

 


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