Introduce yourself

[CMylight]

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.

[Wade]

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

[floridartist]

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

[BT65]

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

[Wade]

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

[floridartist]

Thanks Betty, Thanks Wade, pretty cool, I feel like I got a couple of new connections with you guys.

[Wade]

You do and Welcome !

[konkrypton]

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.

[MarkintheDark]

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.

[leatherman]

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   

[MarkintheDark]

welcome again, and remember: perky is over-rated   

Thx!  At my age I've learned to use perky sparingly

[flashdance]

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....

[Dfwguy]

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 ‘.

[OzPaul]

Hello and welcome to the forums !

[em]

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