Pharmaceutical Frenemies

It's 10 p.m., which is late for me. I am just crawling into bed with my new sunflower sheets, ready to snuggle down and go to sleep. I close my eyes and I remember, Damn! I forgot to take my pills.

BY River Huston

June 29 2012 12:00 AM ET

It's 10 p.m., which is late for me. I am just crawling into bed with my new sunflower sheets, ready to snuggle down and go to sleep. I close my eyes and I remember, Damn! I forgot to take my pills. Then I have the all-too-common mini-debate with myself: One day won't kill you. The responsible part of my brain responds, Just go do it. It will only take a second. The part curled around my feather pillow wonders, What would happen if I just stopped? Honestly, I've had a love-hate relationship with my medication from the beginning. I was able to forgo treatment for most of the 27 years I'd been infected because I also had an acute autoimmune disease, idiopathic thrombocytopenic purpura (ITP), which was killing everything that entered my body, both good and bad. But when my immune system finally slowed down due to unknown forces, HIV was able to get a foothold and went viral. I had to take the meds or die, or so I was told. On the positive side, when HIV started destroying my immune system it allowed me to stop treatment for the ITP. That treatment was awful. There was no choice or time for debates about it. If I didn't do it, I would bleed to death. But it was a painful experience. Within 15 minutes of the IV running into my veins, I felt like an ice pick was going through the center of my head. I got nauseated and faint. The morning after the treatment I felt like someone beat me, put me in the trunk of a car, and then did some amateur drag racing. The following day would be a little better; I only felt like I had slept in the trunk of the car and had been pummeled in the gym by some sadistic personal trainer. Several days later I would finally feel good again, and then it would be time for the next treatment. I did that for 13 years. With HIV active, my compromised immune system could no longer destroy platelets, and I was set free from the IV that had tethered me to weekly treatments for over a decade. (Yay, HIV?) Treatments for HIV had always scared me, especially after witnessing some of the more extreme side effects, like lipodystrophy and wasting. After I was diagnosed I tried alternative treatments, from bitter melon enemas to having my chakras vacuumed, in order to stave off conventional treatments. But when my T cells hit 150 I knew I had to take Western medication. At first it was a horror show. Two years dragged by, filled with every side effect possible. When I read the inserts for the meds, they listed things like, 'headache, nausea, fatigue, metallic taste in your mouth, kidney failure, liver damage, death. If any if these things happen, please contact your doctor immediately.' (I guess I'd have to use a Ouija board to tell my doc about that last 'side effect,' or I would just have to haunt the infectious disease clinic.) Finally, I found a drug combination that didn't kill me. Now it's a handful of pills at night that I can take in one gulp. I have no discernible side effects. What I do know is that when I feel depressed, like I have outlived my expiration date, I fantasize about not taking the pills. These moments are very rare since I have found contentment and peace living in the islands, painting my heart out. But having battled depression most my life, I admit that on occasion it sneaks in to say hello. Sometimes I want to stop the treatment because I am just tired of taking it. It is also a daily reminder that I have this disease. Really, it is the only reminder (except, of course, when I meet someone I might want to date or have sex with). And yes, sometimes I want to skip the meds because it is just inconvenient'like when it's 10 p.m. and the lovely arms of slumber are embracing me. But it comes down to acceptance. I know there are things on the horizon that might make it possible for me to stop the pills, but for now I need to get up, face what might be lurking in the dark ' and in the Caribbean that can be a lizard or a big black spider ' and swallow my pills. Once I do this I am usually hit with a sense of mini-accomplishment. It's also a small reminder that I care, that I am blessed to have access to these drugs, that I no longer have to battle ITP, and that I want to live as long as I can and I will do what it takes to get there. River Huston is the codirector of sevenminuseven, an alternative arts alliance in St. Thomas. When she's not traveling around the U.S. doing performances and presentations, she spends her days on the island, painting, writing, and walking her ancient, small dog Buddy and several strays. You can keep up with her at RiverHuston.com.

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