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HIV/AIDS - DISABILITY & DESPAIR
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HIVNICEGUY posted:
Good Afternoon.

This is my first post on this website........I hope I can get some help. I'm a 46 year old gay man in NYC who was diagnosed with HIV in October of 1990. I currently take 13 medications to treat HIV, depression, anxiety, etc., but am grateful and thankful that I am in good medical health. By my "markers" - T-Cells, Viral Load (850, undectible) - I am doing well, but feel weak, sluggish, and "just not myself." I lost my job two years ago, and my doctor believes that I would not "qualify" for disability because "my numbers are too good." I find this frustrating, mentally and physically, after 20 years of all the medicine I have taken, and believe that this is part of the reason I do not consistantly feel well enough to work. Am I just feeling sorry for myself; I'm grateful to be alive, but feel like everyone thinks I should be running the marathon and just shut up, and I just don't feel that way. I just wonder what all this medicine I swallow is doing to me, beyond keeping my numbers "down."

I also feel lonely and isolated - I've lost many over the years and when I mention "20" people hesitate to get close.....although I look healthy and fine.

Just feeling sad and confused.

Thanks.

Thanks.
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majorconcern responded:
HIVNICEGUY, I have a question since you are HIV maybe you will be able to help me on this...I posted the question about the enlarged spleen being affiliated with HIV....does that maybe sound like anything you've ever experienced or would know anything about? I would greatly appreciate your reply
 
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Nieciedo responded:
Hi, there, HIVNICEGUY,

Have you looked into support groups and other services at the Gay and Lesbian Center or Gay Men's Health Crisis? I think those are both good places to find help, or at least just someone to talk to.

Dan
 
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David J Malebranche, MD, MPH responded:
Dear NiceGuy,

Thanks for reaching out on here, and hope I can help. Please know that I appreciate your honesty with what's going on, and trust me when I tell you that you're not the only one feeling the way you do - so you're not alone.

I would first talk to your doctor about getting blood tests that can specifically cause fatigue and weakness. Those are:
1. a testosterone level - many men living with HIV, despite being treated, have low testosterone levels and this can cause weakness, fatigue and worsening depression
2. a TSH level, which can tell us if your body is producing enough thyroid hormone, which will provide you with energy.
3. Vitamin levels such as B12 and folate, at low levels, can cause your symptoms.

All three of these things are easily treated and sometimes overlooked, but once treated can help your energy levels.

And definitely look into the GMHC and Gay and Lesbian Center - you can also try the Callen Lorde Center in Chelsea. There may be support groups or other ways to help cope if this is related to aging, the meds, or worsening depression.

The main thing is to realize that if you feel lonely and isolated, its real and you should seek help. The same way you take care of your "numbers," take care of your mental health, and look for both physical and psychological explanations. But get it checked out - and don't worry about what other people think... your experience is yours and if you're having a rough time at the moment, reach out for help!

Good luck,

David
 
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HIVNICEGUY replied to majorconcern's response:
No, I'm sorry I have never heard of this.....

In the 20 years I have had HIV, I have been very fortunate. I have heard of many things to watch for - liver condition, fat accumulation around the neck and stomach, skin irritations - but nothing specific about the spleen.

The best advice I can advise you is to find a doctor who really cares and and is competent. I have had five doctors, one was fantastic - who tested me for everything - but these days, it seems they do the routine tests.

What is always in the back of my mind is that the new "HAART" treatment HIV drugs that are coming out are only, at the most, 13 years old, which is not long in terms of long-term effects to the body. Yes, they have "controlled" the HIV for many, but I wonder, day after day, what long-term effect they have on my body.

My suggestion: Bring it up to you doctor. Do your own research. I know you may have heard that before, but beyond doctors, friends, and our own selves, that is what we have. Additionally, I would try to go to another doctor who is not specialized in HIV/Infectious Diseases (perhaps Internal Medicine).

I'm not a doctor, so I really am sorry if I can't be of further help. I empathize with you and hope things get resolved.
 
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HIVNICEGUY replied to David J Malebranche, MD, MPH's response:
David:

Thank you.

I will check these out with my doctor, although I have check into the testosterone and that was fine.

I have gone to a few Center groups for long-term survivors, although most of the members were 8-9 years rather than 20. I guess that doesn't matter, and the meetings were helpful, I just gave up on them. I believe the real problem I'm dealing with is depression - I've been diagnosed "clinically depressed" at 20, and the HIV just hangs over my head like an albatross. And being through so many therapy groups, both individual and group - for HIV and substance abuse - I've grown weary of them. Some are good, some are not. And as couseling was part of my previous job, I almost feel I can run the groups.

I guess I can't let go of what it was like in 1990, when there was just that awful AZT, and young people with catheters in their chests, and the fear and death of beautiful people, etal.

I hate the idea of starting therapy again, but I've isolated myself so much that may be the best thing for me.

Thanks for the response.
 
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HIVNICEGUY replied to Nieciedo's response:
Dan:

Thanks, really, for your response.

I've tried, but not hard enough with the groups. I think it's my mid-life crisis and depression, plus not working, which are the problem.

I'm not really a social guy - been around the track and back - and just feel lonely I guess.

You are right - there are groups for me at the Center; I think I should try them again.

Thank you.

Jeff
 
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epcot407 responded:
have you ever been hospitalized with an oppourtunistic iffection ? social security said that is one of the requirments,i was hospitalized in july 07 with pcp
and did not appy for ssdi till febuary of last year, i was apporved in 30 days,there is a 6 month waiting period before u recieve any checks the also pay back pay

good luck
 
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kiven1952 responded:
HELLO I HAVE BEEN HIV P SENCE 1995 AND I'M UNDETEC ALSO. SENCE I'V BEEN TAKEING ALL THESE MED'S I HAVE BEEN UP AND DOWN. TAKE ONE MED HAFE TO TAKE TWO OF ANOTHER BECAUSE OF IT'S CAUSEING OTHER PROBLEMS. I ASK YOUR QUESTION FOR YEARS BUT AS FOR ME IM DOING GOOD AS FAR AS MY T CELL
BUT AS FOR MY HEALTH IT SELF, I'M NOT MY SELF AND HAVEN'T BEEN SENCE. I ALSO FEEL AS YOU BUT I STARTED LOOKING SOME WERE ELSE TO HELP ME FROM DAY TO DAY. THAT'S THE LORD, HE HAS BEEN THERE WHEN KNOW OTHER WOULD. JUST LOOK UP AND KEEP ASKING HIM FOR HIS HELP, KEEP LOVE FOR GOD AND HER TAKE ROOT IN YOUR HEARTJAMES 2:26. YOU TAKE CARE P.P.
 
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HIVNICEGUY replied to kiven1952's response:
Thanks, Kiven 1952:

I do..... I just feel alone with all of this and that is new - I never anticipated be in this situation - it is the depression, isolation, and, I guess, mid-life crisis stuff, that is bringing me down.

I've always been the one to help others, and, like they say, never help myself. So true. Don't want to talk about it because then I'm "whining," but it's twenty years of it is just wearing me down and I know I'm here by God's and others past's grace and purpose, but just a struggle for me, personally. I feel alone, period.

Thank you for your reply.

Chin up, life is good, move on.

Be well.
 
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Lhivstrong replied to HIVNICEGUY's response:
Hi Hivniceguy, I too feel like the albatross is on my head. I don't talk about the hiv, in fact I try to live as though it isn't there( i'm not in denial) it's just people don't want to know really if you are infected i.e. coworkers, casual friends. It is too me a silent infection. I have been with this thing for 11yrs. For the past 3 years I have been lucky enough to have stopped the meds. But my viral load is showing up again. So I will be on meds again. My one thing I have to get off my chest is the people that do know about it, never ask me how I feel. I think they think I'm like cured or back to normal. I too am tired. I live alone, stay alone. "It's my bed now I've got to lie in it." sometimes that is how I feel. I think we are tired of carrying the albatross! Praise the Lord!
 
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nycsmooth replied to Lhivstrong's response:
I advise a little self awareness like a buddhist book taught life is suffering, to manage this suffering one learns to lose desires for things not neccassary, the sunrise in the morning help me get out of my depression,stopping my brain from thinking to much and just really smelling the roses for real.HIV has changed my life, but the depression is defeatable.the thing that is not defeatable and smoe of most come to terms with is the fact the our meds make us unable to work normally as we used to. the life of poverty caused by HIV is far more devastating. And the lack of actual funding for housing and is horrid, and the disability payments are ancient.I have overcome all this to just be happy to see the naxt day. I am poor, gay and hiv but i refuse to be sad or depressed.I find the lil things in life make me so happy now.Things could be worse.
 
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just_joey responded:
Hey Sad and Confused,

You're not alone btw....

Any improvement on ur dondition lately?

Q: Any strange, odd or recurring dreams???

joey
 
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wiliamss replied to Lhivstrong's response:
I have been hiv for over 10 yrs now and you are so right, no one wants to know the people that do know you are positive don't want to talk about it either so i take my meds and keep putting on foot ahead of the other. Here's a story for you an old farmer had this mule, the mule wouldn't pull a plow anymore and the farmer was to old to dig a grave for him so he pushed the old mule in a well he kept filling up the well with dirt and the old mule would just shake it off and step up before long the old mule just walked out of the well and went to a green pasture lol same with us just keep stepping up
 
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icauser44 replied to David J Malebranche, MD, MPH's response:
Hello,

In response to your response to NiceGuy, I wanted to bring up a similar situation I am having myself. His letter was very similar to what I am going through, and what scares me is I have literally been through every single HIV drug with my doctor, and the side effects get to be too much. I understand any new med will take some getting used to before it works but, after a couple of months on each one, they will all still make me feel nauseated , weak, fatigue, dizzy, bloated, no energy, etc. My body is not reacting postivitely to any of them and my doctor is scratching his head and at this point, we are kind of just mixing ones and see if they hit or miss.

Ironically, I worked in the medical field, so I understand a lot about the medications I am ingesting, but I am very nervous about teh future. Are there some people that just cant fight off HIV with ANY HIV medications? At this point, I was hoping for a little encouragement that I am not alone in this situation, and that there is a resolution for me.

If my doctors arent sure which HIV meds my body would respond to, how will I ever get better?
Please assure me that I can stop worrying.
Thanks.


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