HIV Support Group
HIV (also known as human immunodeficiency virus, and formerly known as HTLV-III and lymphadenopathy-associated virus) is a retrovirus that primarily infects vital components of the human immune system which can lead the syndrome known as AIDS. Many of the problems faced by people infected with HIV result from failure of the immune system to protect from opportunistic...
I was diagnosed in February of 1986
My first thought when I was told I needed an HTLV-III test was a poem by T.S. Eliot:
This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang, but a whimper
The first book I read after I was diagnosed was "Valley of the Dolls" (I was on quite a few pills for sleep, depression, and pain related to the shingles I was recovering from).
The first person I told was my roommate. She said, "You must be scared to death" and I said, "Not quite." and we both laughed.
What were your first thoughts, etc at the time of your diagnosis?
My first thought when I was told I needed an HTLV-III test was a poem by T.S. Eliot:
This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang, but a whimper
The first book I read after I was diagnosed was "Valley of the Dolls" (I was on quite a few pills for sleep, depression, and pain related to the shingles I was recovering from).
The first person I told was my roommate. She said, "You must be scared to death" and I said, "Not quite." and we both laughed.
What were your first thoughts, etc at the time of your diagnosis?
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
THE STUFF IVE READ IN THE LAST TWO YEARS, (AFTER 25 YRS POZ) IS CHANGING EVERYTHING IVE EVER KNOWN ABOUT HIV. AND IM READING STUFF BY THE SAME EXPERTS WHO TOLD US EVERYTHING FROM THE BEGINNING. IM NOT READING SOME LUNATIC FRINGE ARTICLES.
from the horses mouth, im finding out things that they simply didnt make public common knowledge.
its impossible for me to participate in my hiv support group here in town, when half of what theyre discussing in all earnest, is based on science they have no idea is so shakey.
when i think of all the years paul suffered with terrible guilt over what we thought was HIM infecting ME, i realise now that could not have been the case. or was it?
finding out the answers to that, is what has driven me to seek deeper answers, learn how to interpret and understand some of the complicated literature that is hard to find, but its out there, and wow, i have to say, it feels good to have a larger clearer picture of the whole situation.
somehow i always knew.
: )
oh god, this is like the holocaust, but in slow motion, millions will die.
that shifted immediately to, 'nobody will care cause its all gay men, and reagan, well, he was a criminal from day one, so who would expect HIM to react. he never did say the word aids in public.
then when i found out azt was being used, after they knew it was all wrong and that its actual purpose was to SUPRESS IMMUNITY, i knew right then and there, something was very rotten in the whole world wide stage.
now that im learning what i am scientifically, i realise that altho something is killing people, it is certainly not a retrovirus, and when i got to the bottom of some of the science, i was amazed how sloppy it all is.
now my path is to learn more, and begin to translate the findings into easily understood common english, because i find this the biggest obstacle to people knowing for sure, for themselves, which way is up.
I thought the nurse did a poor job of disclosing tho, I was given no information before about HIV or what it meant, I suppose this is because they don't wont people to relax about the dangers of HIV- but as far as I knew I was being told "In 3 years you'll be dead". I was so close to fainting when I walked into my house, just sat thinking about every question with no answers,watching my tea go cold. I can remember that feeling now.
There were no services in the area. My AA sponsor told me not to tell anyone, but then I decided to talk about it in meeting and was met with people being afraid of me. Drunks and junkies afraid of me and what I represented. Someone brought me a Louise Hay tape and a book by Bernie Siegal, Love medicine and Miracles. I began to heal. I did not relapse after having been clean only for 8 months and continued to stay sober and work a program. For many many years I called
1 800 342 AIDS every nite and stayed talking to them til 2 am, it was not 24/7 at the time. I would keep them on the phone asking all kinds of questions that htey themselves barely had the answers to. I told my mother a few weeks after that and she looked through me and said, I had a feeling you were gonna get it. Boy did she hate my ex! He was tested and was my ex then at the time and had it too. He wanted to
get married and have children and the white picket fence before he died. I left him. He died in 1994. A terrible death but that was between him his wife and child.
My mother was afraid and did not want to deal with my death and within six months had moved from NYC to FL where she continues to live. I regret telling her two decades later she didn't need to know this all this time, I am her only child after all.
I got myself off the couch and went to school took a dual degress in addiction counseling and nursing. Became a nurse and immediately went to work for the nearest AIDS agency to get better services provided for my area, I was a shaker and a mover, the head of the task force and a force to be reckoned with myself.
Now I describe in my depression what a fall from grace this was to have to be a client these days instead of a provider. I am grateful that the services exist and I was one of the pioneers in a tiny town of upstate NY that put her two cents in. The grace comes back to me in places like this. And many other ways. I am getting better again. Oh I didn't let the car accident stop me either, I am recovering from that too. This was a great thread to begin, I hope to see it fill up as we go along.
I wanted to be carried. I wanted someone to pick me up, rock me and baby me and make it all ok. I liked feeling like a victim. Alone. Scared. Hopeless.
Then I was angry. So fucking angry at all men. It was their fault. The way they looked at me, lusting. Sick fuckers. Oh how I wanted to rip into any man that looked at me. I planned to entice men and then destroy their world, just like they destroyed mine. I would bite my finger and splatter blood all over their faces and then they would know how I suffer. Men deserved to suffer and die.
Then one fateful day, as I was buried in woe is me and depression, my favorite girl child, my niece Jen, said to me.... "I miss the way you used to be."
That little statement spoke volumes to me. I missed me too. Somehow, someway I was able to turn it all around and BEcome the fighter I AM today.
Out of the mouths of babes....
I feel different today than back in 1986, but I'm still learning from those first few minutes after my news.
I hope more people will add their first thoughts, first feelings at the time of their diagnosis.
Please folks as you come on DS with us add a little something so we can get to know each other and become a tight knit community!