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then what

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em:
then what ?


1996 I had made peace with the fact I was goin to die from AIDS

I was very extremely sick thrush diarrhea skin legions reoccurring shingles night sweats. weight of about 105 or so .  T-cell of 7 my first viral load was done about  this time and it was a large number . This was after about 7 years of knowing I was HIV positive and getting treatment starting with AZT . I not only thought I was going to die I was expecting it .  I was not in a good financial place I had shut of my heat cause  it wsa either heat or ramen noodles to eat could not have both .  The other bills well they where all behind .



Then a new HIV drug study with Norvir .  My first appointment I had to take two breaks in the parking lot to regain my strength to continue on . The short walk had taken me about half an hour . My last appointment the walk was about fifteen minutes with no breaks .   things change.


Then there was the what do I do with myself now question.   twenty eight years later I still have not figured that one out .  Having AIDS has left me weak and well that might be my fault for not doing all I might do to better myself ?


A large part of me did die from AIDS . The part that lived on just a bewildered insecure shell of the person I was before AIDS almost killed me .   


All those AIDS movies they made were everyone dies. They never made the next story ,  the sequel ,  were everyone lives .


Or at least they still breath I do not know how much living is done . I am sure there good times and bad times. I am sure many are going to say I should be grateful to be still alive many did not make it .    I am sure there are a a large number of negative responses from posting somthing like this.

But if someone else out there that is a long term survivor that wonders if anyone else noticed this . The what is life after AIDS ?  The then what . 

 NO happy fairy tail endings no happily ever after .

 On the bright side more chances to see sun rise more years of the wonder of life .   getting older I think comes earlier for those that are living post AIDS people.    long term HIV  survivors  I would think most of us at some time had AIDS .  I would think it had taken its toll on our bodies and well living to a hundred might be out of the question we still have lived a lot longer then many expected . I am starting to fall apart physically . but I am trying not to think to heavily on it being how twenty eight years ago I was almost nearly mostly completely dead .     


The big house on the beach the expensive luxury sports car . the high paying job . admiration form my pears . ya right  That would have never happend AIDS or not   

just wanted to share a thought . I hope everyone is doing the best they can with what they have and life is going along with minimal  sorrow an sadness .


just feeling my age and regrets of would a could a should a missed opportunities. I am sure other sixty year old people out there with out HIV that developed into AIDS are feeling the same thing if not worse .   I do feel lucky to still be alive . just not running any marathons or starting any large corporate ventures or anything . life is good even without those things

thank you for letting me share my thoughts on living post AIDS . Now to just enjoy as much as I can .    for as long as I can

I knonw a bit long and lacking fluidity . twenty eight years post AIDS and ultra sensitve undectable for more then twenty five years I have had a good run and feal blessed


No responses is fine just wanted someone anyone to know I am still alive




 

leatherman:

--- Quote from: em on June 02, 2024, 08:33:34 pm ---1996

--- End quote ---
ugh. 1996 was the worst. My partner had died a year and a half before, and I was in the hospital about to die with PCP. AZT, poverty, a bazillion health issues, wasting. Damn. I remember all that


--- Quote ---Then a new HIV drug study with Norvir

--- End quote ---
ugh, again. While I'm thankful more complex treatments were being formed that were actually working against HIV, that crap was still terrible. I'll blame AIDS for the thrush; but the diarrhea, skin issues, and wasting I'll always blame on Norvir.


--- Quote ---A large part of me did die from AIDS .   

--- End quote ---
ouch. i feel that one. I lost a little more each time one of my partners died too. For a long time I wondered if any of me was left. But I guess I had a little something left. I've made it a few more decades since then, so Yea!


--- Quote ---All those AIDS movies they made were everyone dies. They never made the next story ,  the sequel ,  were everyone lives .

--- End quote ---
Right after the worst part of the epidemic, which could conceivably be up to about 2010, really wasn't the time for a "they lived" type movie because for much of those years, a lot of people didn't survive a long time. It seems like we're most likely in a time now when those sort of movies could be made. 

HIV is rarely portrayed in movies anyway now that the main part of the epidemic has moved through America. Unfortunately, I think there are just too few of People Living with HIV (outside Africa) for anyone to care making a movie about HIV any more. Don't get me wrong, I would love to see a movie about an HIV long term survivor.

So, wow. I went and looked and what do you know? There is a movie about Long Term Survivors from 2015 called Last Men Standing.
https://projects.sfchronicle.com/2016/living-with-aids/documentary/
the tagline: "The film follows eight Bay Area men who had the remarkable luck to survive AIDS, and the brutal misfortune to live on."

("brutal misfortune". wow. that is brutal.)
     

--- Quote ---No responses is fine just wanted someone anyone to know I am still alive

--- End quote ---
Glad to hear from you! Keep on keeping on! :)

Dogman:
I hope as a "newbie" to this world, my comments aren't out of place.
I read your post and it touched me, my longest friend (40+ years) was diagnosed back in the bad days, and I remember when he gave me all his photo albums because he wasn't going to make it (his words).

But here we are, I think 30+ years later and he is still here, and doing just magnificently. He bears the war scars as I call them.  I often feel bad that I didn't offer more support and when he told me his "phoenix rising" story, when he'd given up all hope - and the new class of drugs had arrived. Still makes me teary even when I'm repeating someone else's story.

Trust me though, your "woulda, coulda shoulda" comment hit me -

My biggest struggle with this is beating myself up because I feel I have self sabotaged my own future. I knew better, I knew how you got this, I knew how to prevent getting it - something people didn't know or have early on,  and yet, somehow, in my mid 60's got it. Now instead of planning to retire overseas, I can't - who's gonna take on someone with such an expensive drug habit. How am I gonna afford to pay for the meds in retirement?  What happens if we get an extremist right wing religious government who thinks we're not worth the drugs. While it  pales with your experiences, it's very real. If I could switch this part of it off, it wouldn't be so bad.

The gist of my posting is, my own recent diagnosis - has put a new perspective on how people such as yourself, and others endured what I can't imagine - and well, I don't know, just caused a shift in my being. Sounds melodramatic, I know - but your tenacity to beat it is something that makes me very humbled. I hope what I'm conveying is my empathy for what you went through, are going through and my admiration that you are still keeping on.  Happy summer, and for many more.

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