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Author Topic: 25 Years of AIDS. What do we think about it?  (Read 3384 times)

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Offline sfpvguy41

  • Member
  • Posts: 114
25 Years of AIDS. What do we think about it?
« on: June 06, 2006, 01:20:13 AM »
I have been reading the mainstream press "commemorating" 25 years of AIDS.  I feel left out of that discussion.  I don't think it really reflects on what we're seeing and feeling.  So here is an invitation to join me with what your thoughts are on this subject I want to know how other people with HIV feel.  I'll throw out what I've been thinking:

I'm 44, and came out in 1983 right around when HIV was being "discovered" and AIDS named.  Thank God I didn't come out earlier, and that I practiced safe sex, or I'd probably be dead, as happened to a number of gay men I know mostly just a bit older than me.  That period was so sad and so horrible.  It's like a nightmare.

I went for almost 20 years, would have an "accident" here or there (condom break, etc).  I never thought I was invulnerable, but my annual tests always came back negative.  I figured I'd be ok.  I guess I even got smug - "it's not so hard to stay negative, how come anyone turns positive these days?"

Then in Sept 2002 I went in the hospital, for the first time in my life involuntarily, due to an unrelated stomach condition.  The Dr. asked if he could test for everything, and came back with the bad news the next day.  He said the test could be false since I had a bad fever.  But after some re-tests, just after my 40th birthday, it was confirmed I was positive.

That raised a zillion questions in my mind:  How did I get this?  I couldn't remember any specifically unsafe incident.  But lots of sex mixed with drugs or alcohol left a lot of possibilities.  Would medicines work for me?  Would they be toxic? My natural inclination was to stay off them as long as possible so I tried to be much healthier, and did stay off them almost 4 years.

Now I'm on a great regamin, and all my numbers look great with no current side effects (a few initial ones).  I feel like I have a new lease on life, although I feel it is as tenuous as receiving those 4 bottles of pills every month on time.  I remember counseling a friend who tested positive about 3 years before me:  "it's not a death sentence anymore" I said, and believed it!  I keep having to tell myself that now. 

I came of age when AIDS appeared.  I remember when it was GRID.  I've had friends and acquaintances die of it, including 1 last summer when his treatments stopped working, after he had initially responded well to meds.  He had shitty healthcare from the public system in Mexico.  I have another friend with HIV 14 years, he nearly died last fall when he ran out of treatment options, then Fuzeon and Tipranavir came along to save his life, he now has gotten back to nearly undectable for the first time in years as he has been resistant to everything.   He has a great US health plan, and got access to the latest trials. I have known several long term survivors, who had HIV for over 10 years and never took meds.  I don't trust HIV, it is nasty and cruel, ready to spring back the first time I screw up.

I've worked for AIDS Foundations as a volunteer.  I've given money to AIDS organizations, and still do.  My best friend from childhood made AIDS his vocation, as a case worker, until he burned out after 10 years or so.

I've cried about it, and I've been hopeful about it.  I've screamed "why me?" and I've thanked God not to have gotten it before HAART came along.  I've been open about it and I've been closeted about being HIV+.  I've been scared shitless, and I've felt confident in my treatments.

In retrospect the thing that scared me the most was watching my body decline as the CD4 count went down.  Weird digestive, skin, energy and sex-drive issues.  I'd never really been sick with anything serious before, so it was new to me.  The fear that "if I was trapped on a desert island" and couldn't get meds, I'd die.  (Except if I was on the "Lost" island, where I would magically find a hatch with all the latest meds inside). This past year I had 2 friends die:  one was hit by a bus (seriously), and one dropped dead after 2 days from a weird staph infection.  So I count my blessings - my time hasn't come yet.  It's just something I have to live with and make the best of.  And when it comes, there isn't much you can do about it.

One thing is weird though:  I can't tell my parents or immediate family.  I figure I'm going to outlive my parents, as it is supposed to be, so there's no need to burden them with this - they would go crazy with worry.  They are beyond acceptance of my being gay and well into successfully making it part of our family's life...my partner is always included, and my parents are proud of me.  But this puts up another block - like I've been thrown back in the closet again.

Right back where I started when I came out of it in 1983.  Go figure.
Labs: (undetectable since 2005)
12/13: 634 cdr, 37.3%, 758 cd8, total chol 183, triglycerides 131
8/13: changed to Edurant from Reyataz
12/12: 828 cd4, 34.5%, 1078 cd8, total chol 192, tri 196
12/11: 787 cd4, 37%, 979 cd8.
9/11: 758 cd4, 38%, 944 cd8, und.
8/11 dropped norvir, incr reyataz to 400 mg
6/11: 621 CD4 CD4% 41, CD8 680! Undetectable. Creatinine and eGFR are ok now.
Switched from Truvada to Epzicom in late April 2011
AGT/AST and creatinine back to normal mid-April.
Cut Norvir from regimen.
Switched back to Reyataz/Norvir late Feb 2011
2/11: CD4 664 34%, CD8 963, diagnosed with osteoporosis, high AGT/AST and creatinine.
12/10: CD4: 676 CD4%: 34 CD8: 1012
Switched from Reyataz/norvir to Isentress 10/10
8/10: CD4: 731 CD4%: 40 CD8: 866
Diagnosed Sept. 2002 started meds May 2005.

Offline Sky

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  • Posts: 225
    • Myspace
Re: 25 Years of AIDS. What do we think about it?
« Reply #1 on: June 06, 2006, 01:23:34 AM »
Now that AIDS has turned 25 it's a real eye opener for me.  This damn disease has been wreaking havoc almost my entire life...I'll be 29 in November, and have been poz for three years.  To be honest, the whole thing actually has me sorta speechless when I sit back and think on it.
Poz since 2003.

Offline Biggums

  • Member
  • Posts: 199
Re: 25 Years of AIDS. What do we think about it?
« Reply #2 on: June 06, 2006, 02:11:31 AM »
Good post.  25 years, wow.  I lost my sister to this in 93 and the horror of that time still haunts me.  It was such a terrifying thing with so little information and what was out there was so wrong. I remember her doctor telling us not to let the dog kiss her on the mouth and then lick us!  My most vivid memory of that time was one Thanksgiving, I think it was 86,  when we were all together eating the feast.  She got up and left the table to begin helping with the dishes.  I saw she had left most of her tea in her glass and so I reached for it and slammed it down.  My parents and the rest of those at the table turned pale and looked at me like I had just swallowed cyanide or something.  To my never ending shame, it was hard for me to talk to her about the disease until the end and even after her death, I closed off all emotions relating to it like it never happened. 

Back in December my honey found out he was poz.  God the tears that flowed.  I was so stupid to think this thing would never touch my life again.  But it isn't about me, it's about him.  Luckily the years have given me more maturity and I find myself even more in love with him as a result.

I won't lie, this thing scares the hell out of me.  But I will fight it with him and with your help.  And oh dear God, please don't let there be a post someday remembering a 50 year anniversary and still no cure.
44 year old gay man .......just broke up with the only man I've ever really loved.

You can love completely without complete understanding.

Offline Optimistic

  • Member
  • Posts: 326
  • An Apple A Day Keeps The Doctors Away!
Re: 25 Years of AIDS. What do we think about it?
« Reply #3 on: June 06, 2006, 06:44:14 AM »
25 years and still no cure for Aids...but in reality, there is no major breakthroughs with medicine.  There is no cure for the flu, there is no cure for cancer, and there is no cure many other diseases out there.  Yes we have made slight improvements, but the medical profession is clearly lacking talent in my opinion; humans are clealy not the smartest in this planet, as they so to claim. 

There are so many medical research facilities around the world and yet, over the past century I have not been impressed with the outcome of the researches that have been produced.  So it is no surprise to me that Aids exisited for 25 years and yet, nothing remotely close to a cure has been discovered.  We may have learned a lot about the disease, but that tells me nothing if we cannot apply these findings to useful matters. So basicaly the more information we know about the disease, yet we are not even closerto a cure only tells me that we are not as smart as we think we are.  I always reserve doubts with medical professionals.  I remember when I was in college, I had developed this strange infection that it affected my legs and I could not walk.  I was brought to the hospital and after a week of testing and more testing, they still wasn't able to figure out what was wrong.  Pretty I paid for the hospital bills just so doctors could draw blood from me.  They didn't give me any medications or anything....In the end, it was my body that healed itself....the infection was gone and I left the hospital...talk about a wasted of time and money.  They still have no idea what was wrong with me.  This was not at a regular hospital, but at a very well known (rated one of the best medical research hospitals in the nation)....and they could not figure out what was wrong with me. 

One might argue that meds for Aids have saved many lives, which I do not doubt....but at the same time meds have also killed many people because the meds can cause other complications.  Aids existed 25 years and my guess is that we probably only know less than 1/32 of this disease.  We may think we know a lot, as humans tend to pride themselves on wisdom and knowledge, but in reality we know jack-shxxt. That's just my take on this.

Justin
12/06 (Atripla): cd4 - 260; cd% - 33%; vl - 169
1/07 (Atripla): cd4 - 267; cd% - 38.1%; vl - 132
4/07 (Atripla): cd4 - 373; cd% - 33.9%; vl - <50
7/07 (Atripla); cd4 - 287; cd% - 35.8%; vl - <50
9/07 (Atripla); cd4 - 356; cd% - 39.5%; vl - <50
12/07 (Atripla); cd4 - 517

Offline J.R.E.

  • Member
  • Posts: 6,962
  • Joined Dec-2003 Living positive, since 1985.
Re: 25 Years of AIDS. What do we think about it?
« Reply #4 on: June 06, 2006, 07:48:20 AM »
Hello,

 We have certainly come a long way in 25 years, With treatments, and education, But, We still have a long way to go.  We all need to continue the fight,and to be strong, and never forget those that have lost their lives.

 I would love for all of us, and future generations to be able to say, " Remember when there was aids?" I certainly didn't think, that I would be around 20 years later.



 Always Hopeful-----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 DEC 9th, 2013,  t-cells are at 437 Viral load  <40 .

 Current % is at 16% (L)

  
 62 years young.

Offline joemutt

  • Member
  • Posts: 1,035
Re: 25 Years of AIDS. What do we think about it?
« Reply #5 on: June 06, 2006, 08:33:14 AM »
I think it's 25 years too much.

Offline HIVworker

  • Member
  • Posts: 918
  • HIV researcher
Re: 25 Years of AIDS. What do we think about it?
« Reply #6 on: June 06, 2006, 08:40:43 AM »
Well, I think that was a harsh criticism of the medical community. There have been advances in breast, ovarian, testicular, lung and skin cancer. There are vaccines against the flu and other viruses that cause significant mortality. I think one problem is that the medical profession has picked all the low hanging fruit from the tree and everything that is 'easy' has been done. To cure HIV, flu and cancer requires an insight into the workings of the body that currently don't exist. I think the early progress since 1950 has led to an overestimation of what science can actually do.

Either that or I'm just too thick to get the job done...

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline HIVworker

  • Member
  • Posts: 918
  • HIV researcher
Re: 25 Years of AIDS. What do we think about it?
« Reply #7 on: June 06, 2006, 08:41:44 AM »

 I would love for all of us, and future generations to be able to say, " Remember when there was aids?" I certainly didn't think, that I would be around 20 years later.

My hope too. Just like Polio.

R
NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Offline Iggy

  • Member
  • Posts: 2,435
Re: 25 Years of AIDS. What do we think about it?
« Reply #8 on: June 06, 2006, 09:17:46 AM »
.
« Last Edit: January 12, 2007, 09:50:49 PM by Iggy »

Online GSOgymrat

  • Member
  • Posts: 4,960
  • HIV+ since 1993. INTJ
Re: 25 Years of AIDS. What do we think about it?
« Reply #9 on: June 06, 2006, 10:27:46 AM »
Looking back on 25 years of AIDS I am struck by how different attitudes are now. Back in the beginning a large portion of the population would be afraid to be in the same room with someone who had AIDS. Even some healthcare workers refused to work with people with AIDS for fear of infection. People were dying left and right and sex was really scary. The president wouldn't even talk about AIDS, much less do anything. There was serious discussion of isolating people with HIV, like leper colonies. Fortunately a lot of compassionate people worked very hard and it didn't go that way. Now everyone knows there are people walking around with HIV and people are not trying to prevent them from going to school or work. That progression from societal terror to acceptance has been nice to see.

Personally I'm just thrilled to still be here and not be blind, bedridden or covered with purple spots. When my partner and I tested positive 13 years ago I honestly thought we had maybe 5 years before one of us died. Here we both are still healthy and just living normal lives. AIDS, and his cancer several years ago, have taught us you been appreciate eachother and a health life because it can all be over tomorrow.

As far as advances in medical science I'm not surprised there is not a cure for AIDS. There are not a lot of "cures" for viral infections. If I can stay on a daily cocktail of pills and have the quality of life I have right now until I reach retirement I'm grateful. For people who think scientists should be smarter or working harder I say, without sarcasm, go to school and start working on a cure. Become a medical researcher.

Offline Terry

  • Member
  • Posts: 339
  • 7/13/82 Infected
Re: 25 Years of AIDS. What do we think about it?
« Reply #10 on: June 06, 2006, 11:04:51 AM »
Option,

Great post!

Terry

Offline Trish

  • Member
  • Posts: 332
Re: 25 Years of AIDS. What do we think about it?
« Reply #11 on: June 06, 2006, 12:47:33 PM »
So I count my blessings - my time hasn't come yet.  It's just something I have to live with and make the best of.  And when it comes, there isn't much you can do about it.

How true is that?  And probably all the more reason for us to live each day to the fullest.  And for me, I intend to achieve my goals... something I never thought about 17 years ago.  I let my dreams die in 1989, but today I have more hope than before.

Excellent post Options... thanks for sharing your life & thoughts with us.  You've certainly given me something to think about... Thanks!

 :)
« Last Edit: June 06, 2006, 12:50:29 PM by Trish »
"People grow through experience if they meet life honestly and courageously. This is how character is buit."  Eleanor Roosevelt

Offline purpledragonfly

  • Member
  • Posts: 149
Re: 25 Years of AIDS. What do we think about it?
« Reply #12 on: June 06, 2006, 10:24:39 PM »
I have been thinking alot about this since i first heard about it being 25 yrs.
I became infected in 88, was put on azt in 89, i took myself off of it later that yr. and i am so thankful i did. Azt was killing me.I didn't go back on meds till April 97.
I remember back in 89 going to JCPennys and looking at the clothes, i started to laugh and said at least i will finally be able to fit into small clothes finnally, you see i have been a big person most of my life. but no, even after getting sick and being on meds. i am still a big woman.


But i can't complain. There are times i forget i am poz. i didn't get sick for quite a few yrs. after being poz. so it was easy to live a normal life. I didn't date because i was rasing 3 sons and they were my main concern, it wasn't till after they were growen and out of the house that i became lonley and started looking around. That is when it all hit me. I couldn't just start dating or sleeping around, i had this bug in me and no one wants to get any where near someone with it. So i have been trying out the dating sites for people with hiv/aids, so far no one. I guess even men that are poz are picky. I just wish people would look at the whole pic. and not judge on what is on the out side.
I hope they do find a cure in my life time but if not i have lived longer then i thought i ever would. I remember praying to God to let me live long enough to see my youngest son gradutate, he is 22 now and i am still going strong. I hope i can see some of my grandkids gratuate, the oldest is 10 so it could happen.
I have been thinking about getting a support group together here where i live since there isn't one.Maybe now that Trish and Zeph, and others are stepping forward it will give me the courage to do the same.

Love Wendy

Offline Eldon

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  • Posts: 2,664
Re: 25 Years of AIDS. What do we think about it?
« Reply #13 on: June 06, 2006, 10:55:38 PM »
We have a lot of work to do.

Offline AlanBama

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  • Posts: 3,578
  • 'class' of '87
Re: 25 Years of AIDS. What do we think about it?
« Reply #14 on: June 07, 2006, 03:28:39 PM »
There are some very beautiful and touching testimonials on MSNBC, under the "health" section (then click AIDS at 25, then "readers remember").

Most days I am able to to hold the memories of the 'dark days' at bay, and think about the present.   Sometimes, something will trigger a memory and I find myself slipping back into that desperate, hopeless state of mind.

I hate this disease.
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Markmt

  • Member
  • Posts: 174
Re: 25 Years of AIDS. What do we think about it?
« Reply #15 on: June 07, 2006, 03:59:18 PM »
What comes to mind after 25 years of aids is how the long term survivors must have felt on diagnoses in those early days of lack of knowledge, stigma and no hope of treatment. You are my heros and I feel grateful you are still around and giving so much love and strenght to others. May you enjoy many many more years to come,

mark
"Live to love and love to live."

Leo Buscaglia

Offline bobik

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Re: 25 Years of AIDS. What do we think about it?
« Reply #16 on: June 07, 2006, 05:00:08 PM »
One of the things I find very hard is dealling with the memories of the people who died. I realise that after having lost my loved ones, I am about to lose them again. My life goes on, I go through many things and the more I experience, the more I change. I become older, wiser (i hope  :-\ ) and i think differently about things. I realise that maybe when I would get my friends back it would turn out that things wouldn't work out anymore between us. I would maybe react differently. Friends died that were older than me, now I am older than they would ever become, and I am not sure if they would like what I have become, I'll just never know but it seems to get harder to feel what I felt for them because I am not the person I used to be when they died. It feels like I am losing them again.

Does this make sense?

Coen
Coen Honig at Facebook

 


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