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Author Topic: Project Inform Forum Focuses on HIV and Aging  (Read 3016 times)

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Offline edfu

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"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Online Jeff G

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #1 on: October 29, 2009, 10:43:13 PM »
That's a great article . I can relate to many things discussed there .

Offline aztecan

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #2 on: October 29, 2009, 11:29:13 PM »
Good article.

This is an area that needs much more research and community support.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online Jeff G

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #3 on: October 29, 2009, 11:38:05 PM »
I totally agree Mark . Getting older can sometimes be isolating in itself , add HIV and its even tougher . If you figure in age ,health and HIV it has not really been discussed much .   

Offline aztecan

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #4 on: October 29, 2009, 11:44:46 PM »
There are many of us who can see themselves, at least in part, in that article.

The part that mentioned those who never expected to live this long so didn't plan ahead or save money - that really hit home.

As you mentioned, aging lends itself to people isolating themselves, when you add living with HIV to that, and the sense of isolation is even greater.

It  is more prevalent than many people believe. I see it going on around me. I know at least one person who is doing this very thing.

Now, what do I do about it?

I'm not sure yet, but I'm working on it.

HUGS,

Mark
« Last Edit: October 29, 2009, 11:59:38 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline edfu

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #5 on: October 29, 2009, 11:52:56 PM »
The onset of HAART has proved miraculous for so many of us who have lost almost everyone we knew during the first 15 years of the pandemic.  Now, research is woefully lacking in understanding the problems of we survivors.  Time and again, we are faced with the conundrum:

Is it the many years' infection with HIV?  Or is it the not-yet understood and not-yet recognized side effects of our many years' use of our antiretrovirals?  Or is it simply the effects of old(er) age?  Or is the HIV exacerbating and speeding up the effects of old(er) age?  Or is it the psychological isolation created by the fact that, for instance, I have only one friend who is my age (67) or older?    
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Online Jeff G

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #6 on: October 30, 2009, 12:01:46 AM »
Yep ... it was right on target . I almost felt as though it was written about me at times .

I neglected my education and a possible career just to put a roof over my head . When I tested poz at 22 and lost my insurance it was a mad scramble just to survive day to day .
As I got older panic set in and I was depressed all the time about stuff I did not think of when I was young . It was like oh my god what and how am I gonna take care of myself if I do live .

I'm lucky my dad provided for me after he died but I never expected that . There is not a day that goes by I don't spend a moment and think of others not so lucky because I know the fear only a mature man can feel when he cant provide for himself properly .  

Sorry for the rant LOL . That article touched a nerve in me from a place that is slow to heal .

Offline leatherman

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #7 on: October 30, 2009, 12:30:28 AM »
so "fragmented life narratives" is the nice term for being deadly sick throughout and losing my entire 30s and part of my 40s by losing my jobs, losing my homes, losing my friends, losing my cars, losing my partners, and losing my dignity ...
... and then not dying from it after all  ::) :D and trying to figure out how to keep on going.

I know my friends and family have their own problems, and I know everyone likes to think that their problems are the worst; but absolutely no one, but people I've met here, have gone through the same amount of illnesses, traumas and losses that I have. The only person that even comes close to having the same issues as I do is my 93 yr old grandmother, though I've still lost twice as many husbands, been hospitalized three times more, easily have taken triple the amount of pills and see more doctors than she ever has.  ::)

even when/if they figure out the physical reasoning behind AIDS accelerating the aging process, I still think all those doctors will just pop-poo the serious psychological damage caused to us by living thru an epidemic. Too often doctors think that just being undetectable is the goal is giving us back a "long and healthy" life.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline edfu

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #8 on: October 30, 2009, 12:53:48 AM »
Thanks, leatherman, you've pointed out one more important issue to be considered regarding this topic:  post-traumatic stress disorder and the effects this can have on our physical well-being.  There is indeed a little research done on those of us who have survived for so long.  It points up the fact that we are similar in many ways to those who survived the trenches in World War I  and the conflict in Vietnam.  I've observed, witnessed, and known about the deaths of over 150 ex-lovers, best friends, friends, and acquaintances. 

Your excellent post under the heading "Apologies" in this LTS forum also shows why the LTS forum is so important for many of us.  I would like to think that discussion of these issues is precisely why the LTS forum is so valuable and why it was established.   
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline leatherman

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #9 on: October 30, 2009, 01:54:17 AM »
I've observed, witnessed, and known about the deaths of over 150 ex-lovers, best friends, friends, and acquaintances. 
not too long ago I was trying to explain why the death of Michael Jackson was troublesome for me. Although a fan, I wouldn't call myself a "fanatic", so it wasn't the fact that it was Michael whom has passed away. As I told many of my friends, if they only knew how many people who would have been 50-years old are actually gone. There's a huge demographic gap of people who have simply vanished. Of course people in all age categories die; however, Aids-related deaths have caused 1000s upon 1000s of people to be gone who would be my contemporaries today in the 45-55 age bracket. I know all those people are gone (and MJ at nearly 50 seemed like another one of them) because I'm one of those lonely survivors still here in that age bracket.

Your excellent post under the heading "Apologies" in this LTS forum also shows why the LTS forum is so important for many of us.  I would like to think that discussion of these issues is precisely why the LTS forum is so valuable and why it was established.   
thank you.

but I see it still didn't help bridge the gap of understanding the issue. just after my post, a newer member here first believed that he actually suffered from AIDS (undiagnosed) for 10-15 years. Perhaps he was HIV positive for that long; but, not to belittle his actual health issues now, he has only lived with the low tcells and symptoms of an actual AIDS diagnosis for probably less than 2 yrs. Untreated AIDS still kills within 18 months, give or take. Then he also believed that only being on meds (new improve whoop-de-doo 2009 meds) for 6 months would somehow "soon" cause him to suffer the puking agony and anemia like someone who had taken AZT monotherapy every 4hrs using alarm clocks back in 1993, or perhaps lipodystrophy like someone on the high dosages of Zerit or Ziagen around 1994. That someone on today's meds when the clinical prognosis is 1000% better** than it was for those diagnosed 15 years ago would want to read the LTS forum so he could "look into long term problems" is just plain stupid. He'll never have the issues he reads about there, because he will have never been on any of the regimens that cause those issues the LTSs discuss.

** well, that might be an exaggeration. LOL wonder what improvement it really is for "Due to effective antiretroviral therapy, life expectancy of HIV-positive people in the United States has increased dramatically – more than doubling between 1996 and 2005". I mean it's got to be more than just 200% because in 1992 when I was diagnosed with AIDS (not just HIV+ but the whole shebang) the prognosis was 18 month till death. Randy died at almost exactly 18 months, while my life expectancy has WAY more than doubled!

It just baffles my mind that anyone would even want to be considered part of the LTS group. You'd think the "newbies" would like the fact that Atripla is going to save them from the misery and suffering others went through to get to this point. But then again, it baffles my mind that people are still being diagnosed with HIV today, much less waiting until they get an actual AIDS diagnosis. If they truly did go through what other LTSs did to "earn" that moniker, they would have been tested a long time ago and gotten onto meds or they would have been practicing safe sex so they didn't die like all their friends around them.

Hmmm, anger is one of those PSTD symptoms isn't it? LOL It seems I needed to vent some of that. That's okay though, tomorrow I'll probably be crying and that'll be messing up my tcell count too. And that's why I think the pyschologicial issues of having AIDS (and being older) are just as important as the physical issues and yet these mental issues will not be as recognized or treated. (bringing my whole rant back around to being on topic. ROFL)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Oh my friends, my friends forgive me
That I live and you are gone.
There's a grief that can't be spoken.
There's a pain goes on and on.
Empty chairs at empty tables
Where my friends will meet no more.

"Empty Chairs at Empty Tables" from Les Miserables

Offline AndyArrow

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #10 on: October 30, 2009, 06:42:45 PM »
Thanks for posting the link to that article. 

1. The article really touched close to home (especially the part about HIV destroying the lining of the gut)

2. Matt Sharp is cute!  ;)

Its things like this that make the LTS forum a godsend!  Being able to discuss my esophageal strictures/the outbreak of CMV in my esophagus & living with a feeding tube for a year & a half(all past tense now, knock on wood) really helped me get through all of those problems.  Now, it just looks like I have 2 navels!   :o 

And speaking of treatments the newly infected will hopefully never have to deal with are those hideous 2x daily Fuzeon injections that I hated so much and stopped when I was running out of places that weren't hard lumps!

I also think it's good to have a separate LTS forum so that those posting in Am I or the newly diagnosed in Living With won't be freaked out by all our medical conditions that they won't suffer from. 

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline OneTampa

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #11 on: October 31, 2009, 09:27:43 AM »
That article is so on point.  I can definitely relate.  The piece was well written with the best combination of science and sense.

I also agree that the area of HIV and Aging needs further exploration.
« Last Edit: October 31, 2009, 09:30:30 AM by OneTampa »
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline Joe K

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #12 on: October 31, 2009, 12:18:17 PM »
The hardest part for me, is that I am a survivor of an entire generation of gay men, who are simply gone.  All my friends would now, be in their 50 - 70's, but they are lost forever.  It's hard enough for me to acknowledge the immense sense of loss, over losing thousands upon thousands of gay men, than to guess at what we have truly lost.  How many of our lost would, have made real impacts if they had lived?  How many would have served as mentors to our community and how many of them, could have changed the world?  Sadly, we will never know and all that is left, is each of us, with our horrible memories of loss.

I don't have any poz friends from my past, because almost every one of them died.  I survived, but with each passing year, I sometimes think that maybe the ones, who died early, had it much easier.  I hope you understand that comment, because some times just trying to stay alive, is more than I can handle and I am so fucking sick and tired of being sick and tired.  I am just getting over a troubling respiratory illness, that has now lasted almost three months.  Drugs, puffers and inhalation therapy for three months and for what? To hang on until the next "crisis"?  Yes, sometimes I think that, in the end, my friends may have been the lucky ones.
« Last Edit: October 31, 2009, 12:19:55 PM by killfoile »
Life is what happens, when you are busy making other plans.

Though you may be only one person in the entire world, to one person, you may be the entire world.

I wish to become half the man, that my dog thinks I am.

Remember me with simple acts of kindness and I will live forever.

Online Jeff G

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #13 on: October 31, 2009, 12:33:38 PM »
Hi Killfoile . I know its hard guy . Please try and keep up the good fight . Many of us here  are or have been there , I know I have . I cant count the times I have felt all is lost only to find things have turned around for the better . Jeff . 

Offline OneTampa

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #14 on: October 31, 2009, 01:18:59 PM »
I fully understand all the posts above and know that navigating life and loss can be unbearable at times.

Here is a 2008 Newsweek article that also captures the triumphs and challenges of living beyond time expected with HIV: http://www.newsweek.com/id/159517/page/1
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline pozatude

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #15 on: November 04, 2009, 02:46:19 PM »
I sometimes think that maybe the ones, who died early, had it much easier.  

I agree with you whole heartidly and have thought this many, many times.  We have all fought so hard to survive this disease and sometimes I wonder, for what?  I try to keep myself involved with things that have always interested me, but to be honest, very little interests me these days.  But, I'm one of those who believes there are no accidents and we simply MUST be here for some reason . . . if I figure that out, I'll let you know!   ;D
"Live, Laugh, Love"

Offline aztecan

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #16 on: November 12, 2009, 01:23:39 AM »
. . . I am so fucking sick and tired of being sick and tired.  I am just getting over a troubling respiratory illness, that has now lasted almost three months.  Drugs, puffers and inhalation therapy for three months and for what? To hang on until the next "crisis"?  Yes, sometimes I think that, in the end, my friends may have been the lucky ones.

Joe, I was thinking this earlier today.

I am tired of switching meds, tired of taking other meds to offset the side effects of the HIV meds, of eschewing foods I enjoy like cheese, butter and bacon, to try to offset cholesterol levels elevated by my first three or four regimens, and I find myself wondering why I continue to do it.

What really bothers me is I don't have a good answer to that question.

I guess I continue because I am too stubborn to give up, or maybe too fearful of what may happen if I do. Dying is inevitable. But having a stroke or severe heart attack is not. I have no desire to end up an invalid in a nursing home any time soon, which I guess is what I am afraid of.

So why am I here 24 years after testing positive and, is that a good thing? As Pozatude, said, we must be here for a reason. I just wish I knew what the hell it is.

HUGS,

Mark




« Last Edit: November 12, 2009, 01:37:59 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online Miss Philicia

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Re: Project Inform Forum Focuses on HIV and Aging
« Reply #17 on: November 12, 2009, 10:11:27 AM »

So why am I here 24 years after testing positive and, is that a good thing? As Pozatude, said, we must be here for a reason. I just wish I knew what the hell it is.

Life has no reason.  We simply exist, just like a lowly ant.  Now go read some Camus.
"I’ve slept with enough men to know that I’m not gay"

 


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