Subjects in this issue:

Lipodystrophy

Ryan White Authorization

Shit Storm

Get Sharp

Reader's Poll

Ask the HIV Expert™

Lipodystrophy

I thought it was very interesting and very sad that the man whose face you chose to illustrate “chipmunk cheeks” (“Banishing Chipmunk Cheeks and Bullfrog Neck,” Sept./Oct. 2006) had to have his eyes blacked out to become unrecognizable because of identification as a person with HIV/AIDS 25 years into the epidemic. The stigma now is perhaps worse than it ever was even at the beginning in the 1980s and early 1990s. The author left out an important and often shame-producing effect of protease inhibitors, fatty breast tissue, an effect from which I suffer, and from which countless other Queermen suffer. This is a source of great derision among Queermen. How often I have heard Queermen yell cruelly “man boobies, man boobies” is beyond counting. Why is it that no one speaks about this [side] effect? I am asking Queermen to be kind, rather than cruel, causing pain to those who suffer from this reaction to the drugs. I was one of them who hid in shame and who hid his “protease body” in the shadows, knowing that it was I about whom they were talking when they yelled “man boobies.” In a world of youth and beauty and arch masculinity among Queermen, any deviation from that becomes shameful, and many Queermen are insensitive to the pain they cause to those whose bodies cannot look like the Queermale ideal. It would seem that there is as much stigma about having HIV/AIDS in the Queermale community as there is in the straight world. I think this is outrageous and shameful. Because of the reaction to this [side] effect, I am asking that my name be withheld. I suppose I still carry around some shame about my body.

Name withheld, via the Internet, Chicago

I am very interested in this topic as my doctor was convinced I had a case of chipmunk cheeks. I thought that it was more to do with loss of fat in the center of the face (I was right, as it turned out, after an ultrasound).

However, I still look like I have chipmunk cheeks. Thanks for your article. It was most helpful.

Name withheld, via the Internet

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Ryan White Authorization

Regarding your interview with [IL] Rep. Schakowsky (“One-on-One,” May/June 2006): Her (and your endorsement of) contention that the proposed funding formula for the Ryan White CARE Act would “take away” money from “hard-hit” cities like Chicago ignores the fact that smaller cities like Indianapolis and rural areas which have been underserved by the RWCA would benefit. It also belies an attitude that only the largest metropolitan areas need more funding. Hunger in Indianapolis or Sacramento feels exactly the same as it does in New York or Chicago. The needs of an HIV-affected person are the same in any locality. The reality is that there are significantly greater resources in larger cities beyond those provided by direct HIV/AIDS funding. The proposed funding formula corrects an imbalance that causes real suffering in rural and small-town America and in smaller cities. Rep. Schakowsky is advocating for her constituents, and that’s her job, but don’t assume that that position holds the moral high ground. People need help in the hinterlands, too!

Tracy L. Elliott, Executive Director, Damien Center, Indianapolis

Jeff Berry replies: I think we both probably agree that the Ryan White CARE Act Reauthorization would best be used to strengthen effective systems already in place, rather than dismantling them, as well as to correct imbalances that may have existed in the past. I agree that hunger is the same everywhere—I actually have a good friend who lives in Indianapolis, and who has been struggling with finding adequate care and access to treatment (I believe the Damien Center helped him out!). So I realize that this is an important issue that affects all of us equally.

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Shit Storm

Regarding “Shit Storm” (Pickett Fences, Sept./Oct. 2006): I cried, I laughed, I cried some more, and then I remembered being on the bus with my dear, sweet now deceased lover when the handful of popcorn he ate at the mall turned into an explosion. The only silver lining was that we were just a block from our bus stop, but it may as well have been a mile. I’ll never ever forget the look of horror and shame and fear on his face, and I never loved him more than at that moment—my brave AIDS hero who had battled every fucking indignity known to a poor illegal immigrant with AIDS was now sitting in his own shit, which in some perverse way immediately filled the bus with a stench from the pits of hell! But doncha know…we got to our stop and then we walked home, first in silence and then with fits of roaring laughter while the brown water ran down his legs, into his sneakers, and overflowed onto the sidewalk! Your article brought back a very “special” memory and believe it or not, I thank you most sincerely.

Jim Davis, via the Internet, Hollywood, CA

Jim Pickett’s article was right on. It is so humiliating to be in public when the brown monster strikes! I had a similar event last year, except I ended up clearing out one half of the men’s room in Grand Central Station in NYC! Since then I carry an extra pair of underwear with me, and I keep a roll of toilet paper in my car. I wish I knew how to avoid these accidents.

Name withheld, via the Internet

I cannot tell you just how close to my truth this story is. Well, right up to the final event. I’ve been spared that. I’ve lived with what I call “fear of farting” for so many years, I can’t remember it not being in my mind. And the fear came from a number of incidents. It’s led to an ongoing fear—that I’m on the street in my hip garb, and somebody say, “Um, sir (I hate being called sir as much as anything I can think of), there’s shit running down your leg.” Your story lets me know there is life after … . Thanks for the tale.

Name withheld, via the Internet

I am now 52. When on my first cocktail (I was diagnosed in July of 2000, when having a mild case of PCP, if you can consider that mild!), I had constant diarrhea for at least 4.5 years, while on Viracept and Combivir. I learned to accept it as a daily occurrence. To relieve having to crap 12 times a day, my doctor changed the Viracept to Reyataz, which caused a severe heart condition, which kept doctors trying to figure out what was going on. It changes the way your heart beats. The diarrhea stopped, but then I begged to be put back on Viracept because I was just feeling totally lousy due to the Reyataz. This, of course, caused the diarrhea problem to return. The Viracept and Combivir cocktail started to fail. I’m now on Lexiva and Truvada, which seems to be working, except the diarrhea, not as frequent, gives no warning and is quite explosive. Plus the nausea is much more frequent. I need to mention, that at the time I was on Viracept/Combivir, I was in the process of having both of my hips replaced, due to steroids I was given when I had PCP. I often crapped my pants on the way home from work, because I just couldn’t make it home in time. Talk about being embarrassed! You are not alone!

Name withheld, via the Internet, Chicago

I’m sorry you had such an experience with diarrhea, so I thought I would let you in on a little story that happened to me. I am a police officer living with HIV and am very healthy seven years after being diagnosed. When I first started taking my meds I had terrible diarrhea for about a year and then it began to taper off. Now I have occasional bouts, but nothing like it used to be. I keep the Immodium with me at all times and if I feel that I might be going to have a bout, I use it and it works 99% of the time. Guess I am just lucky.

Well, on to my story. I received a call to go to a large public building to take a report. As I arrived and was walking through the lobby I thought I had some gas. But guess what? It wasn’t gas, but liquid. Here I was now, in very public view in a very large building with hundreds of people around… and in full uniform. I panicked and immediately went to the very large men’s room and went into a stall. I was not sure what to do but I remember receiving a well-being check on the radio and reported I was having trouble finding the correct place. In the meantime I had removed all of my equipment, which is a project in itself. The gun belt is held onto the pants belt by “keepers,” which are little leather straps which wrap around the gun belt and pants belt. It is quite a project to remove the keepers. All the time I knew I had more diarrhea on the way.

Next I knew my pants had to come down and an inspection was in order. So, down came the pants with my gunbelt perched precariously on the toilet paper holder. I then accidentally bumped into it, sending my radio into the toilet and the rest of the gunbelt out of the stall onto the floor.

Now I am in a real jam. The restroom was very crowded and I could hear people talking outside the stall, wondering what was going on. I was finally able to work my way down to the floor (at this time, no pants on at all) and retrieve my equipment and weapon. I am sure everyone on the outside was having a good laugh. After retrieving my gunbelt, my next project was to retrieve the radio from the toilet. After retrieving it I found I could receive messages but not send. I heard the dispatch calling me to see if I was okay, but I could not send to let them know that I was.

Other units were automatically dispatched to ascertain my well being. I could hear them signaling their arrival on the radio.

Luckily the liquid had not penetrated my underwear and I was able to dispose of them after getting myself back together. But how do I explain my absence? After about a half hour I came out of the stall sans underwear and found the units that had been called to check on me. Luckily I just made up the story that I had accidentally dropped the radio in the toilet after not feeling well and that was why I had stayed in the stall for so long.

Well of course the story got out. Cops love gossip, but I saved myself the embarrassment of the true story of what really happened. I went home sick that day and was so disgusted with myself, but I realized it wasn’t my fault and after a while I started to have a few good laughs about it.

I have not had any such “incidents” in the recent past, but it is always in the back of my mind: when is the Big D going to strike again? Thought you would enjoy this and hope it gave you a few laughs.

Name withheld, via the Internet

Geeze, I get sick and tired of these kinds of stories. They’re why I left an HIV group. I have been on meds for 16 years, and yes, I’ve taken breaks. And I’ve been extra lucky as well to have not experienced these “events”/side effects. But reading this I thought maybe not so much “luck” as plain God-given common sense. A chicken and bean burrito and washing down meds with a greasy donut and coffee? Why not just take a laxative? And reference to being “chained to the ball and tether of bottles of meds.” Boo-hoo. Why do so many otherwise intelligent gay men have such a penchant for drama? I’d like to see this printed and get flamed to death. And to see a score of similar replies: get over your “gay” self for a reality check!

Name withheld, via the Internet, Los Angeles

Tell this guy Imodium is his best friend.

Name withheld, via the Internet

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Get Sharp

First off, Matt (“Half Century,” Sept./Oct. 2006), “you look marvelous!” Keep it up. You, my handsome comrade, are not by any means alone. I live in the Seattle area and in March will turn 55. I was diagnosed in May 1987, CD4 = 147. What the fuck was a CD4 count? All I knew was about the same prognosis you were given, get your papers in order.

With my good health and trying to keep stress out of my life, I have never had an OI [opportunistic infection]. CD4 is around 200 and stable. No viral load. Sustiva and Truvada. We have both lost most of our best friends and our partners. But also remember this, bud, so have a number of our HIV-negative friends. Our job now is to keep on keepin’ on. I wouldn’t trade our wisdom for love or money (more hair and less wrinkles… well, anything is negotiable). You seem a great example and inspiration for many younger people today. Be proud of that experience and celebrate the hell out of life every day. You have given me cause to celebrate!

Name withheld, via the Internet

Congrats on your 50th birthday! I am really sorry that no one celebrated this amazing achievement of yours. Turning 50 is not anything to take lightly whether you are HIV-positive or not. The fact that you managed to achieve this while fighting for your life is, I think, truly admirable. You and your story are an inspiration for a lot of people, both with HIV and without. It is not about the disease, it is about your will to survive. My best wishes on your past birthday, and for every future birthday that you will be having. God Bless.

Name withheld, via the Internet

Many thanks for the article “Half Century: Turning Fifty Hasn’t Detracted From Surviving AIDS,” by Matt Sharp, which I have found via The Body’s weekly e-mail bulletin. I’m 52 and HIV-positive, and it’s a help hearing the words of Matt.

Name withheld, via the Internet, Wales, U.K.

In six months I too will turn 50, and have survived 26 years. I can’t believe how many I have left behind and it saddens me. Every city in every country I go to there are lost friends. I feel I am living a second life as no one at all from my past is alive. The odd thing now is I am worrying about my pension planning, a dreary prospect after almost two decades on disability.

Name withheld, via the Internet

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