Just The FX, Ma’am
Thanks for the Side FX issue (September 2000). Since I just started cocktail no. 999 (well, it feels like that), it was great to review each of my meds and find some comfort in knowing it isn’t “all in my head.” I am much better prepared for my next visit with my doc as a result. I was also wondering where I might send my application for potential husband of Cleve Jones (“Keeping Up with the Jones”). I’d certainly like to apply.
Mountain View, California
I’ve been getting POZ since day one. Your Side FX issue is one of the best. It’s about time people started talking about drug side effects in plain language and offering some ideas on how to manage or avoid them. I have had several friends whose medical providers didn’t warn them about side effects of their meds, and guess what? They are dead. I was diagnosed in 1986, and I think I’ve been able to avoid some of these problems (as well as some opportunistic infections) because of the information provided by POZ and science editor Lark Lands. Keep up the good work. It may not be good news, but it will save lives.
West Haven, Connecticut
Finally! I am glad to see information about pancreatitis (“Pills! Chills! Thrills! Spills!” September 2000). I have lived with this affliction for over three years after being diagnosed with HIV 15 years ago. My doctor tells me I am one of his best success stories, but I don’t always feel that way. The docs say the most likely cause of pancreatitis is the “wonder drugs” that were supposed to help me beat AIDS. Now those meds are off-limits for me and using any new drugs might be like playing Russian roulette, with my pancreas as the target. I have already developed diabetes as another nasty side effect. What more can I say? POZ has always been a tremendous source of information for me. Please keep it up.
I am disappointed that ingrown toenails, a potential side effect of indinavir (Crixivan), wasn’t discussed in your articles. After trying “the cure” twice—surgical removal of part or all of the nail—without lasting success, I opted for a matrixectomy, removing the matrix from which the nail grows. I will continue to take Crixivan because it works for my viral load and T cells, but I’ve now had almost all my toenails surgically removed. This is not a trip to the manicurist! It is a major problem and should be given attention.
New York City
POZ responds: Nurse Know-It-All knows: See her October column, “The In Crowd.”
Seems strange to me that a magazine that is a great source of information to HIV positive people would use terminology that might be upsetting to them. Imagine an HIV positive person getting the magazine for the first time and reading an article about lipodystrophy that uses descriptions like puppet face and buffalo hump (“The New AIDS Look,” June 2000, and “Pills! Chills! Thrills! Spills!” September 2000). Perhaps this person sees the facial wasting progressing every month. The fat pad on the neck and shoulders has progressed from size no. 15 to no. 19—wreaking havoc with that wardrobe, I might add.
I saw a person with Down’s syndrome, and imagine! I didn’t stare, point and say, “Hey, look, a Mongoloid!” Let’s try to be more sensitive about how we talk about others, and stop worrying about how much we hate the person who infected us (Publisher’s Letter, September 2000).
Via the Internet
Second That Emotion?
As a health educator and AIDS activist, I have been challenged, supported and informed by POZ ever since its inception. Then, at the end of last year, my life changed. While friends and family were preparing to celebrate the new century with enthusiasm and hope, I received unexpected and shocking news from my physician: a routine HIV antibody test came back positive.
The next few months were filled with a dizzying array of health problems—anxiety attacks, depression, hospitalization for PCP and debilitating fatigue. POZ was my lifeline, and I devoured each issue, sometimes fearful, often overwhelmed, always wanting more.
In April, I began taking a fistful of medications each day that made me feel better. I started a journal to explore my readiness to share my HIV positive status with others. But no matter how well I felt or how much I wrote, there were feelings gnawing away at me that I couldn’t acknowledge or even identify.
Today, I tore into the usual stack of bills and advertisements to retrieve the September issue. The first thing I read was Brad Peebles’ terrific Publisher’s Letter. That’s it! He expressed eloquently the feelings for which I had been searching since my diagnosis—anger at the man who infected me, shame for risking my life in order to feel wanted and loved, guilt about possibly exposing others to this disease, despair when considering friends who may themselves be taking risks. For the first time, I have been able to come to grips with these long-buried feelings. I feel new energy from knowing that I am not alone in these struggles, not crazy for having so many conflicting feelings. I appreciate Peebles’ honesty, integrity and willingness to share his innermost thoughts and feelings. Once again, POZ has come to my rescue.
After reading Brad Peebles’ Publisher’s Letter, I had to climb out of bed, half–drugged with my nightly meds, to thank POZ from the bottom of my heart and soul. I’ve spent the last 15 years trying to convince myself that I have given up the anger against the person who passed the virus to me. Now it’s finally hit home that I can blame no one, not even myself, for my infection. I shed a great many internal tears while reading Peebles’ words of wisdom and truth. After years of counseling those who seroconverted after me, I’ve finally come to the realization that it’s OK to feel hurt, anger and, most importantly, remorse for those who haven’t taken the decades of prevention programs and enormous loss of life to heart.
Via the Internet
Kudos to Brad Peebles for bringing attention to questions of personal responsibility and self-hate in rising infection rates. But he didn’t go far enough. It is in our power to end the epidemic by stopping new infections. But to do that we have to look really hard at the dominance of anal sex in gay male life. That’s the only way to do it. As long as man penetrating man is celebrated as the ultimate gay sex act, people will continue to have unsafe sex. POZ won’t look into this issue because it has now become part of a bloated AIDS establishment, unwilling to examine the behaviors that prop it up.
I’m not shocked that infection rates are climbing once again. Sex is a way of bonding and belonging in order to break away from the suppression of being gay in the USA—something that’s still undeniably harsh for a younger gay generation. I became infected nine years ago, when I was 27. I don’t look back in anger, but I am sad about my lost gay youth. And I feel guilt that I’m not a mentor to a younger version of me—an HIV negative young gay man at risk because of his longing to bond and belong. If these young men could feel the freedom to date other young men without ridicule, chastisement and hate from society, that would be HIV prevention.
Cads and Monsters
I am writing after reading the August 2000 cover story (“The Miseducation of Nushawn Williams.”) In 1993, I fell in love with a man who had hemophilia. He assured me that he’d been tested for HIV every six months and had always tested negative. I trusted him, married him and put myself at risk. Then I got pregnant and learned that I had HIV. My husband still claimed he was negative; later, he claimed he hadn’t known of his infection. In 1997, because of the hemophilia AIDS litigation, I learned that my husband had been positive—and aware—since 1984. We separated in 1998. My ex then began living with another woman and withholding his HIV status from her. Now we are divorced and I’ve learned that he had infected someone else before me, too. The district attorney in Polk County, Florida, where we’d lived, told me there was nothing I could do. I will never feel justice, and he will continue to spread this disease.
I have a story to add to the August issue about “AIDS monsters.” In June 1987, I met the one—a handsome young man named Jeffrey. I had just broken up with my lover of 12 years. Jeffrey knew the right words to say and, the next thing you know, I bought a house and we moved in together. When I asked if he had been tested for HIV, he said, “Don’t worry, I’m negative.” But a few months later he suddenly began to cry and burst out with the admission that he had AIDS. When I tested positive a month later, he never even said he was sorry. Three years later (I stayed with him because I thought nobody else would want an HIV positive person), I discovered that he’d had unsafe sex with a friend of ours. More and more questions came up, until he admitted that he was “seeing” a few other guys. One of those guys found out about his AIDS and filed charges against him. I finally kicked Jeffrey out of my home. Then the phone started to ring as more and more guys came forward. This was the test case for the Michigan HIV transmission law. Jeffrey fled to New York state. I flew to New York for an extradition hearing, where I was pelted with eggs and rotten fruit by ACT UP members who hate this law. All seven of the other guys who had sex with Jeffrey are now dead. Jeffrey received five years’ probation. The best part was that Jeffrey later sued me for palimony.
As a PWA, community educator and activist, I know that POZ’s recent coverage of HIV transmission statutes and the people affected by them (“America’s Most Unwanted,” August 2000) has enlightened and frightened many people. Anyone who hasn’t read the article yet should do so. The focus of prevention is now turning toward placing the responsibility on the infected. Disclosure is certainly a piece of the puzzle, but putting all the emphasis there opens up the possibility of blackmail, false claims and threats from former lovers. Will those of us who are positive have to carry around a release form for intimate partners to sign, stating that they are aware of our HIV status? (Checklist for next date: shower, mouthwash, new outfit, restaurant reservations, flowers—and don’t forget the HIV disclosure release form.) I’m afraid this is just the tip of the iceberg: the return of the HIV-concentration-camp mentality.
Via the Internet
As an HIV positive inmate in Texas, I was glad to read Tim Murphy’s article (“Alabama Bound,” September 2000). Segregation is cruel and unusual punishment, as well as plain prejudice. This virus is at least 20 years old, and some prisoners were born with it. So now we pay for a crime plus get segregated because of how we were born. Murphy says that Texas has an HIV-only treatment facility, but this is not so. Texas doesn’t segregate HIVers. All inmates everywhere get inadequate health care for HIV, though. As for ending the spread of HIV, if we don’t do education and spread the knowledge, we should go ahead and stick a fork in it.
Tim Murphy responds: I wrote that Texas doesn’t segregate