Had A Great Time, Wish I Was There
It's been over a year since I've returned from a two-year holiday from drugs. The break in the war arose through a unilateral decision. I'd had enough. On paper and in my blood, all was well. My T-cells were massing into the 1,000 range and my virus was hiding out in caves, invisible to reconnaissance. The bombing had done its job, the enemy was weak, and, though not necessarily on the run, it was beaten into submission.
But I too was beaten up. I was calling for an unequivocal end to the years of fatigue, the years of catching daily waves of nausea, and the years of "mild to moderate" diarrhea, which had fine-tuned my bathroom radar into a highly sophisticated instinctual response, no thinking required. Who has time to think? No matter where I was, near, far, or yonder, I could locate and advance towards a rest facility within moments. And while moments, crucial nanoseconds, were sometimes more than I had to spare, more times than not I hit the target before a catastrophic bowel movement occurred somewhere inconvenient and embarrassing, like my pantaloons. Of course, sometimes the radar directed me behind an alley dumpster in full view of Chicago elevated trains with only newspapers to freshen up, or to a door-free stall in a gay bar, or to a facility with a toilet that had already been filled to the brim by, no doubt, someone else surviving the joys of protease inhibitors.
So I made the cease-fire decision unilaterally, though it became a bilateral agreement five days later when I showed up at my doctor's for a regular appointment. When I told him I had halted the shock and awe campaign, he listened quietly to my reasons and my complaints, which came out much like the diarrhea, all at once and with an amazing velocity. When I was finished, as I wiped the foam from the corners of my mouth, he calmly laid out three options for me. Two courses of action were of the regimen change variety, to arsenals that promised equal firepower with less gastrointestinal distress. The third was a temporary peace coupled with regular inspections.
I chose door three. And was so happy I wanted to cry, marry him, and snap the neck of a virgin chicken in his honor. Hail Fine Doctor! Doctor Is Good! Long Live Doctor!
All I did was cry. No chickens were hurt. Always the bridesmaid ...
There was peace in the valley for two glorious years. And then the inspections showed the troops were beginning to mass to threatening levels, and that my defenses were sustaining injuries and taking casualties. For clarity, my T-cells had gone below 350 and my viral load was in the 50 - 60,000 range. I had to acknowledge that it was time to start the smart bombing all over again. I did not want to get sick.
I cried. And PETA be damned, if there had been a chicken nearby I would've throttled him. With bitter pleasure.
In January 2002, the assault was renewed. I decided to join the SMART study (Strategic Management of Anti-Retroviral Therapy) in which I would be randomized into one of two arms. One arm looks at viral suppression, so you stay on meds all the time. The other arm looks at the number of T-cells as a marker, so you cycle on meds when you go below 350 and you cycle off when you go above.
I did 5,000 "nam myoho renge kyo's," knocked wood and threw salt over my shoulder whenever the mood struck, hoping I would be randomized into the cycling arm. I should've tossed in a few million "Hail Mary's" because I was put into the viral suppression side, no interruptions, no breaks, no holidays. Ever!
So I considered throwing a brick through a Kentucky Fried window. Of course, I did have the choice to not be in the study and just do my own thing. But this research is important and I wanted to be a part of it and blah blah blah, shut up already. Put on that burkha and take your pills. Forever!
One of the weapons I chose to utilize was Sustiva, thinking, "hmmmmm, sexy, acid-like dreams? I can do that!" Well, I certainly had the freaky dreams, but they were not sexy, and the acid had spoiled. Ever get your hands on some bad acid? "Uff da," we say in Norwegian. "Not good." For almost five months I dreamt incessantly of things like overflowing ashtrays and big, fat, mean Ms. Kronwall from fourth grade. Often violent, the dreaming included collateral yelping and thrashing and lots of it. Every day I woke to my fine cotton with high thread count bed sheets wrapped around my neck, comforter and pillows all askew and akimbo, giving my bedchambers a very "Baghdad post-liberation" look. And gazing into the mirrors on my ceiling, I was a perfect match. I was not getting a whole lot of rest. And a tired Pickett is a cranky, psychotic, prone to irrational and regrettable behavior Pickett. More so than normal, way above baseline.
My doctor attempted a couple of times to switch me, but in some sort of demented martyrdom thing I was working, I kept trying to stick it out. I had heard that Sustiva gets better after a month ... someone else said after two months ... then it was after three months ... I wasn't going to wuss out. Plus, it all was working. My viral load was back to undetectable and my T-cells were steadily on the rise.
But it never got better. Poultry was unsafe. And there was no room for yet another set of luggage under my eyes. As much for me as for the people who inhabit my little corner of the universe, I finally switched to something else (Viramune).
Besides the looming threats of neuropathy, lipoatrophy, lipodystrophy, anemia and liver problems, there really are no discernible side effects right now. I feel fabulous. I'm climbing the hills of northern Illinois and kayaking down the rapids of Lake Michigan. I'm high-fiving the lady at my dry cleaners. I'm playing uplifting patriotic music on my tuba. And I'm starring in some billboards with Magic Johnson where he says, "Easy," I say "Breezy," and we both say, "Living with HIV."
Jim Pickett lives in Chicago and works with the Chicago Department of Public Health coordinating its acclaimed The Faces of AIDS project. He writes a column called "Pickett Fences" for the bimonthly Positively Aware and engages in all sorts of advocacy and activism.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.
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