i am living with hiv and have been fairly healthy.

I am living with HIV/AIDS and have been fairly healthy for nine
years. I have been on many medications from AZT to Crixivan and
had severe side effects from disorientation, fatigue, digestive
problems, a brain hemorrhage and developing breast tumors on
protease inhibitors. Yet, I have continued to work long hours as
a professional and a businessman. When medications no longer were
an option for me, I turned aggressively to nutrition and some
alternatives, and for awhile seemed to be able to maintain stable
TCell counts and low viral loads. Slowly those numbers have
deteriorated. By December of 1997 I was struggling with
maintaining energy and concentration, but still pushed on. In
January I looked at my shortened work abilities, my labs and my
growing fatigue. Having worked hard at adhering (or if you prefer
complying) to medication protocals -- and having been on
monotherapies, drug trials and combos that all rendered me unable
to remain productive, I no longer! have medication options. In
order to ensure that the organization I run can continue under
leadership that must give 110% five and six days a week and
balance tremendous pressure, I have made the decision to leave
work and "retire". While I don't think I will have to worry about
my paid for house or car, I must worry that I have too many
assets to receive SSI or medical care. So what I have to
carefully structure my planned poverty.

For years as Director of an AIDS service organization I have been
seen as a picture of the "healthy" side of AIDS, and it has been
easy for people to be around me as I did not look ill. Now, 80
pounds later and making known that I no longer have the ability
to continue work, I see the look in people's eyes as they watch
at arm's length. I see the not-knowing-what-to-do, what to say
and the occassional person who simply doesn't want to be around
me because they can't handle how I look. I have a good doctor,
and every month we talk about approaches to maintain quality of
life, and when I have a good day I think this is all in my mind
and I am really not getting sick, I should keep pushing myself. I
hear of a new therapy and then later read about the Stephen
Johnson's side effect or the bone marrow suppression or the
possible nauseau and headaches -- and know with my history if
there is a side effect to cope with I will probably experience
it. And the only way that is acceptable is if I do not have a
staff, board of directors, community organizations and
contractors, and most of all clients, depending on my presence.
Medication failure for me has led me to feel great personal
failure. To my career, to my staff, to my board and to our
clients. A feeling of shame, and sense that the poster person of
health turned poster child of failure should not be seen. I face
six to eight months until disability would kick in, and no SSI
(too many assets) and no medical card (for the same reason
including a car valued at over $2,000). I will deplete my assets
in that time and hope that there is no large gap where I would be
forced to sell my house, sell my car (which in order to get any
medical benefits I may have to anyway) and get a food box. Oh,
yes that might pose problems too as in the last two months I have
started to develop food allergies, lactose intolerance, and
cramps and diarreah from many foods. Yet I will remain focused on
maintaining quality of life as my primary goal over quantity
since that is more realistic! This is not the first time I have
gone through a dramatic life change -- once before I was fired
when an employer found out I was HIV positive, and I lost my
home, car, friends and much of my world as I knew it. I built a
new life, new career and thrived for the next eight years. Facing
it now because the disease, not the world around me is making the
call, is difficult because as I said earlier it feels like I have
failed. I don't have any questions today -- perhaps tommorrow I
will. I am now on what they call salvage therapy and marinol to
try and make it so I can eat and at very least maintain my
weight. What a name -- salvage therapy. But so far minimal side
effects, and while the Hydroxyurea is surpressing viral loads it
is known to, and is bearing out, no rebuilding of TCells or
immune system. However, when the doctor said -- we can't wait any
longer if there is any chance of future therapies beyond keeping
you from going blind or minimizing some of the horrors of AIDS, I
chose to try this yet unsubstantiated therapy. I hope my story
helps someone else not feel so alone in the trials of surviving
long term AIDS challenges. Bben51@aol.com

Post Extras: Remind Me!