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Author Topic: Introduction - New to Forum  (Read 778 times)

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Offline HIVSince1995

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Introduction - New to Forum
« on: August 12, 2019, 12:03:36 am »
 --- Pre Introduction ---

As my name suggests, I was diagnosed with HIV in the summer of 1995.  Although there were many signs that I was positive a few years before that.

Co-workers, friends, neighbors and family were all coming out as having AIDS and then they were dead within six months. 

All of them - not one lived. 

I don't remember one person who I found out had AIDS before 1995 that is still alive.  An HIV test existed before 1995 but, I could see little reason to take the test as there was no effective treatment.

I've used the word AIDS on purpose.  At that moment in my life, there was no distinction between having HIV and having AIDS.  Everyone who had AIDS had HIV and everyone who had HIV got AIDS and died.

In 1995 I came down with an OI and took the test. 

I paid for the test in cash and took it under a fake name.  Life insurance companies were allowed to ask the question "Have you ever tested positive for HIV”?  Health insurance companies were allowed to check medical records to see if any insurance company had ever paid for an HIV test.  Insurers couldn't see if you tested negative or positive but, they could see if any other insurer had paid for a test.  Even having taken the test meant you were too much risk for them to take on.

In the summer of 1995, my T-Cells were 600 and the viral load test wasn't yet used by a Primary Care Doctor.

I found a great ID in Nov of 1995 and he retested.  My T-Cells were 170 and my VL was over 5 million.  T-Cells from 700 to 170 in five months was not a good thing.

The doctor wrote me a script for low dose Bactrim as pneumonia prophylaxis and said, "you need to take the Bactrim once a day because ..."

"...you have AIDS and if you don't take the Bactrim you could get pneumonia and die".  In 1995 T-Cells below 200 was a Dx of AIDS.

All I heard was “AIDS and DIE”.

The doctor went over a great deal more, he talked a lot anyway.  Then he gave me a lab slip for some more blood tests and some more prescriptions.  One of the meds was in very short supply and could only be filled at one pharmacy nationwide.  They mailed you the pills every month but, before they would mail the pills they called you and had to speak to you in person – they wanted to make sure you were still alive because there was a waitlist to get the pills.

I didn't know what to do, where to turn.  I had a job with an expense account, gold American Express card, mileage points, a gym-toned body, the haircut a tan I was in my mid-30sand I was going to die.

I filled the scripts, learned they were for a new kind of therapy called "a cocktail" and started to poop.  No, really, I pooped more than any one individual should poop.

I mentioned it to the doctor and he changed the meds and ran more tests. 

For the next five years, he changed the meds to avoid side effects then changed them again to avoid different side effects, there was always a new med just out or a new kind of med in the pipeline.

When the history of the 20th Century is written 1996 will be known as the year people stopped dying. 

I knew people who have their names on the AIDS quilt and others who have a tree in the AIDS Memorial Grove in Golden Gate Park.  An entire generation of gay men vanished and somehow I did not.

I've moved to two different cities since then and every time I've found a new ID doc before I even turned on the electric at the new house.

Today I live in a smaller town.  I have an ID doctor who a bit younger than I am and whose HIV training was in New York during the worst of the AIDS crisis.  He knows his stuff.

I remember when I had one medication that was 5 pills 3 times a day (15 pills a day) plus two other prescriptions.  Some with food, some on an empty stomach and others that had to be taken at bedtime or first thing in the morning.

Now, it's one pill once a day (except I can't swallow that big a pill - so they break it down into its constituent medications).

My viral load has been “under” for well over 20 years.  By “under” I mean under the limit the test can detect.  Today we call in undetectable and talk about U=U.  But, the test kept changing.  It sensitivity kept creeping down from <1000 to <400 then <100 to <20

So, I've come to think of it as just “under” whatever number the test is not sensitive to.  About seven years ago my viral level came back as 20.  Not less than 20 but, exactly 20.  The doctor scratched his head and looked at me.  I was the one to reassure him, “someone forgot the 'less than' sign.”  He nodded.  That was the last time I was not “under”.

Today my T-cells are “normal”. 

Seriously, it is exhausting trying to remember all those numbers.  Cholesterol, glucose, A1C, RBC, and lots of things that I'm sure are very important but, are not my job to worry about.  I have both a primary care and an ID and I like it that way.  My primary doesn't look at every pimple as an HIV Pimple and my ID looks at everything with an eye on my HIV status – I get to sit in the middle try to be the reasonable one.

– Introduction –

OK, now for the real introduction.  I am NOT my HIV. Yeah,yeah, pills, numbers, viral loads, U=U, the cure, the vaccines.  It's all interesting and its not ME.

I care about those things I care about my past and look forward to my future.  I'm living with my wonderful husband and we are buying a new home.
HIV will not control my life and I make sure I do everything I can to keep HIV at bay.  Yes, I take my pills every day and do my blood work about 3 or 4 times a year.  And I try to let it stop there.  Notice the “try”?  Because I'm not perfect at it.

We love live theater, enjoy the outdoors (as in well-maintained parks, not a tent and a fishing pole), We have four nieces and nephews who we love and who love us back. Recently, my nephew and his wife had a baby and we became a great uncles.

There is no way to forget the past and I don't want to.  It's an old saying but, it's true:  Yesterday is history, tomorrow a mystery and today is a gift, that's why we call it the present.  I remember that most of the time.

The people who are diagnosed today have a huge struggle on their hands and their journey is as valid as mine has been.

I am in awe at millennials and am tired of baby boomers who bash them.  They are hard-working intelligent and living in the brave new world my generation helped build and envies what it will become.  In many ways, I feel like I have a foot in both the baby boomer and Generation Y (millennials) universe.

I can write in cursive but, I cannot type 300 words a minute with my thumbs on a phone.  Then again my niece learned to write in cursive by watching a youtube video (so, there – they can write in cursive).  Grandparents who complain about their grandkids shouldn't be allowed to hand them anything electronic and ask for them to fix it.

I'm not a “people person”.  Have you met “people”?  I am however a good friend and as a middle child, I love being both a big and a little brother (of course my brothers and I are getting near social security age). 

I can talk to anyone – yet rarely let people inside too far.  When I do make a friend I try to keep them.  I've lost so many people in my life that I get worried they will also leave.  Yet I do have friends and family.

I am not a set of HIV related stats – and I am.

I am not a pre HAART survivor – and I am.

I am not without compassion for those that think one pill a day is difficult – and I am.

I do and I don't think things are better with the Internet.

I don't miss shopping malls – and I do.

Are you rtill reading this?  Then say hello.





Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline leatherman

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Re: Introduction - New to Forum
« Reply #1 on: August 12, 2019, 07:00:16 am »
Quote
I am in awe at millennials and am tired of baby boomers who bash them.
me too. technically born in 62 I'm a boomer, but the real boomers have used up everything and are working hard to destroy everything else. I'm much more millennial than even Gen Xer; because of how AIDS f-ed up my life, I really understand how hard the kids have it today. They are learning the same resiliency I learned to stay alive throughout the AIDS epidemic and the death of my two partners.

My and my hubby just bought a 78 yr old house here in the Carolinas for us and the doggo and couldn't be happier. I hope y'all get a house that makes you two are happy as we are.

I don't remember one person who I found out had AIDS before 1995 that is still alive.  An HIV test existed before 1995 but, I could see little reason to take the test as there was no effective treatment.
. . .
Are you still reading this?  Then say hello.
Hello and welcome!
yep, those were the bad ol' days, weren't they? Glad to hear your life went on to be much better.  ;) :D
leatherman (aka mIkIE)


chart from 1992-2017
Tivicay/Prezcobix

Offline fabio

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Re: Introduction - New to Forum
« Reply #2 on: August 12, 2019, 08:52:35 am »
Hello there,welcome to the forum.
1995 was when I was born,also it was the time the communist regime in my country ended and my parents emigrated to Greece for a better future. I didn't know even on 1995 they didn't have hiv  tests,and don't know how they went and suddenly learned how to do that now.
I can't imagine what you've been through with the fear of not knowing how to deal with hiv like we do today. What matters is that you're here alive and well,with your husband and nephews and nieces.
The mailing the meds part is reminding me of my current situation,since we get one refil of arvs every month (and I have to call them to send me the meds),whichat some point in 2015 they didn't have supply of and many people had to go to hospitals to protest. Of course the nurses and the secretaries always keep a stash for me just in case (I think because I'm nice to them and tell them jokes about the docs haha).
Trying isn't  bad,giving up is what is bad to me. After all we are all here to try,try to survive or whatever 😅. It's stories that I read here like yours and it all makes me wonder what strength it takes to go through something like that and remain sane.
Getting a house is quite the good plan. In my dreams I imagine myself either with a cabin in the woods or an rv haha.
You should always remember the past,because it's what makes you, well....you!
I think every generation is gonna bash the next one every time. I think today it's the shell of hiv/aids that scares us,the stigma. It's that and the overpricing of medication (or the lack of them) which makes life feel out of control.
It is true that no matter what technology makes (video chat,intercontinent communication) it will never replace face to face contact. It might only help a bit with the advice type,mailing of sorts.
I'm very happy that you have a good life now and that you joined us in the forum. Know that (even though I'm very young 😅) I will be glad to help you with every question you have. I know I even cringed writing/reading the previous sentence haha.




Offline lightalltheway

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Re: Introduction - New to Forum
« Reply #3 on: August 12, 2019, 05:49:36 pm »
Hello,

Welcome to the forum.

Thank you SO MUCH for giving me the pleasure to real your story, to reflect on your struggles and to see hope in each and every word.

A very warm and special HELLO to you. For your victory, your positivity and for the way you look at things.

Although i am from the one pill aday generation, i do highly believe that your reflection is a connection of our narritive. Without you, i am nobody. Without the souls of those who we lost, without the hope of those who survived, i am litrally nobody. so big thanks for you and only you.

Thank you for showing the true meaning of hope and life. And another thank you for reminding us that we are connected. A generation after the other.

Maybe in 10 years of time, we will have the luxury to take one pill a year. Even by then, we are all connected.

Good luck with your new life and hope your new home will bring you more peace and joy.

Prince

Offline HIVSince1995

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  • HIV Activism Isn't Easy. It is However Required.
Re: Introduction - New to Forum
« Reply #4 on: August 12, 2019, 09:04:38 pm »
My and my hubby just bought a 78 yr old house here in the Carolinas for us and the doggo and couldn't be happier. I hope y'all get a house that makes you two are happy as we are.
Hello and welcome!
yep, those were the bad ol' days, weren't they? Glad to hear your life went on to be much better.  ;) :D


Hey @leatherman

Congrats on the new home and thanks for the warm welcome

I'm also at the end of the baby boomers.

I agree that the pre HAART days were the "bad 'ol days".  At the same time, I remember the community coming together.  Gay men were forbidden to donate blood.  So, lesbians donated as often as they could. 

I remember ironing boards.  People needed to organize and every weekend there were organizations with volunteers on the streets of San Francisco.  They'd bring their ironing boards to use as a table to get names, donations and mailing lists going.

I remember Project Inform's newsletter and I'd read it every month.  Much of it went over my head but, it let me know people were looking for a cure.

I remember SILENCE = DEATH.  It was an organization that refused to let society forget.  They were often purposefully disruptive.  Yet, they kept the pandemic in the news.

Nice to meet you

Hello there,welcome to the forum.
1995 was when I was born,also it was the time the communist regime in my country ended and my parents  Know that (even though I'm very young 😅) I will be glad to help you with every question you have. I know I even cringed writing/reading the previous sentence haha.

Hey @fabio

Thank you for the offer to help.  I seriously appreciate it.  Your experience is very valuable.  And the thought of you needing to storm the hospital for your meds is heartbreaking - although you did get your meds and good for you.

Hello,

Welcome to the forum.

Although i am from the one pill aday generation, i do highly believe that your reflection is a connection of our narritive. Without you, i am nobody. Without the souls of those who we lost, without the hope of those who survived, i am litrally nobody. so big thanks for you and only you.

Prince

Hey @Prince

Thanks for the welcome.  I seriously admire the "one pill generation".  I try to imagine being told to take one pill a day on my first visit and for years after and can't even wrap my head around it.

Believe me when I say that I do believe it's just as difficult a journey for everyone with HIV.  No matter if it's been 20 years or 20 minutes.  The fear is always real and so is the hope.
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline harleymc

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Re: Introduction - New to Forum
« Reply #5 on: August 13, 2019, 01:27:40 am »
Welcome,  good to have another old(ish) timer here.

There are a few of us with 1980's diagnoses hanging around, we certainly have a lot of friends missing so it's nice to make new friends.

I remember those weird combinations of the mid nineties.  They made me so very sick but they also kept me alive.

A few years back I had a HIV activist in his 20's who wanted to pick my brains for lessons to apply to the current issues, I really had nothing I could offer him, it seems to me that the generations are facing fiercely different challenges.

Anyway enough of that.

once again, welcome

 


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