A Letter
Joe. My. God.: Sharing my concern over the cavalier attitude that so many young gay men seem to have regarding HIV, on Monday a reader sent me the chilling letter reprinted below. Please read this guy's story and reconsider what you think you know about HIV being a "manageable disease." For some people, it may be. But for many others, including this reader, it is a daily hell. I thank the reader for his letter and for his kind permission to print it here.
Hi, Joe --
I am sixteen years into being positive. Ten of those years I have been on a triple combination of Crixivan, Epivir and AZT. The first few years, once I got over the constant stomach cramps and nausea, were okay. My blood numbers improved and I eventually reached undetectable levels of HIV.
But I only had about six months between the end of the stomach cramps and the beginning of intermittent diarrhea. It's gotten so bad that I'm afraid to fart, because a couple of times I thought that was what I was doing and I ended up shitting myself instead. You can imagine what sort of stomach cramps I get sometimes after lunch. I now keep Depends (Depends! -- I'm not old enough for diapers!) at my desk at work.
I've had three bouts of pneumonia in the last two years.
My skin has gone from pretty trouble free to being covered with eczema patches, and I've developed a whole slew of allergies to things that are just part of life, like tap water -- try buying enough distilled water every day to shower and shave (I don't, but I'm allergic to something in the tap water -- we're trying to figure out what it is).
And I went from 135 pounds to 118 -- my former lover thought I was skinny at 135.
My liver and kidneys are beginning to show their damage. I don't make a lot of money. The medications I currently take would be beyond unaffordable if it weren't for a fairly decent health insurance program at my work; if I begin to suffer from serious organ deficiency or, god forbid, failure, there would be nothing between me and the Pearlies if I hadn't been able to get work with companies that insure their employees. That's something for the youngsters to chew on -- how many retail stores, especially the trendy, single-door types, insure their employees? How many bars, cafes, messenger services? How many companies in general, for that matter, insure their employees? Being young and carefree often means not paying attention to things like health and dental benefits, but how are they going to feel if they get infected and can't get coverage?
My social life is gone. I'm always afraid of an accident with the diarrhea, and I can't drink any more at all -- not wine, not beer, certainly not liquor -- although I never did drink much. Now, alcohol just makes me sick. The AZT has made my fingernails fall out once already, and they look and feel like they're getting ready to do it again. I also have "chemo hair" -- not much, with no body, and no life. My doctor and I agree that we don't want to change the medications -- I can't face having to go through a whole new set of physical miseries, and there's nothing like a guarantee that a new combination would keep the HIV in check.
All that is the negative. Of course, there is positive. I am grateful to be alive, and to be able to do some good in the world in a small way. I still enjoy little things even if I can't do the big stuff anymore. When my stomach's okay, I still like to cook and to eat. And once in a while, I can actually get over the physical pain and get some satisfaction in a decent jerk-off. So it's not all bad. But anyone who says the HIV has become a manageable disease like diabetes or high blood pressure is just plain not speaking from experience. Take it from the cranky old fella. It ain't no bed of roses.
A JMG Reader.....
Hi, Joe --
I am sixteen years into being positive. Ten of those years I have been on a triple combination of Crixivan, Epivir and AZT. The first few years, once I got over the constant stomach cramps and nausea, were okay. My blood numbers improved and I eventually reached undetectable levels of HIV.
But I only had about six months between the end of the stomach cramps and the beginning of intermittent diarrhea. It's gotten so bad that I'm afraid to fart, because a couple of times I thought that was what I was doing and I ended up shitting myself instead. You can imagine what sort of stomach cramps I get sometimes after lunch. I now keep Depends (Depends! -- I'm not old enough for diapers!) at my desk at work.
I've had three bouts of pneumonia in the last two years.
My skin has gone from pretty trouble free to being covered with eczema patches, and I've developed a whole slew of allergies to things that are just part of life, like tap water -- try buying enough distilled water every day to shower and shave (I don't, but I'm allergic to something in the tap water -- we're trying to figure out what it is).
And I went from 135 pounds to 118 -- my former lover thought I was skinny at 135.
My liver and kidneys are beginning to show their damage. I don't make a lot of money. The medications I currently take would be beyond unaffordable if it weren't for a fairly decent health insurance program at my work; if I begin to suffer from serious organ deficiency or, god forbid, failure, there would be nothing between me and the Pearlies if I hadn't been able to get work with companies that insure their employees. That's something for the youngsters to chew on -- how many retail stores, especially the trendy, single-door types, insure their employees? How many bars, cafes, messenger services? How many companies in general, for that matter, insure their employees? Being young and carefree often means not paying attention to things like health and dental benefits, but how are they going to feel if they get infected and can't get coverage?
My social life is gone. I'm always afraid of an accident with the diarrhea, and I can't drink any more at all -- not wine, not beer, certainly not liquor -- although I never did drink much. Now, alcohol just makes me sick. The AZT has made my fingernails fall out once already, and they look and feel like they're getting ready to do it again. I also have "chemo hair" -- not much, with no body, and no life. My doctor and I agree that we don't want to change the medications -- I can't face having to go through a whole new set of physical miseries, and there's nothing like a guarantee that a new combination would keep the HIV in check.
All that is the negative. Of course, there is positive. I am grateful to be alive, and to be able to do some good in the world in a small way. I still enjoy little things even if I can't do the big stuff anymore. When my stomach's okay, I still like to cook and to eat. And once in a while, I can actually get over the physical pain and get some satisfaction in a decent jerk-off. So it's not all bad. But anyone who says the HIV has become a manageable disease like diabetes or high blood pressure is just plain not speaking from experience. Take it from the cranky old fella. It ain't no bed of roses.
A JMG Reader.....
posted by cockoholick at 9:38 AM
2 Comments:
A great post. I hope readers don't think he is the exception.
My doctor says he has many 20-something guys wearing Depends. He said the culprit is often that they have contracted two strains of HIV which is unmanagable. There is the belief that once you contract HIV, it is OK to have unsafe sex with another person who has HIV. However, once you contract HIV, you are only one unsafe act from no sex at all.
Best of luck to this guy and thank you for sharing your story.
Thanks for sharing this story.
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