Coming Clean

So I sat there in my doctor’s office, and stared at the wall, the lamp, the floor, everything but his face. I like my doctor. He looks sort of like Joss Whedon, and is very approachable. Very friendly, chatty. And he stays on top of the science, which I find cool. Also, he has not tried to ask me out. Believe me, when you have had experiences like mine, these tidbits become more and more important.

So anyhow, I am making a confession. I preface it with the semi-funny request, “Please don’t break up with me.”

He chuckles. “I’m not going anywhere” he replies.

Ok, so here goes. Like most people, even though I intellectually know it for crap, I still have the authority figure thing going on with the doctor. He does, after all, hold a considerable amount of power over me. Especially since I am on Medicare/Medicaid, and the options for ID specialists that take that pseudo-insurance are NOT broad.

I stopped taking my meds.

My adherence for the first few months on my new regimen was as good as it’s ever been, better than ever before, actually, but still only maybe 90 percent. Which, with HIV meds, is close, but not quite good enough.

Moreover, I felt like crap most of the time. My life became confined to the bedroom, the futon in the living room, and (especially) the bathroom. The AZT made me weak, and fevery. The Norvir made me nauseated. The combination made me a prisoner of my bathroom for hours out of any given day. Thank God/dess I have wireless internet and an iBook. ‘Nuff said.

The quality of life sucked. It sucked big time. My body was flabby, my brain was stagnant, I was finding myself obsessed with death. I stopped planning for a future, any future. I started researching ways to kill myself. I just wanted it to be over.

During this depressing time, I stopped taking my antiviral meds. After all, when one is looking into the cost of renting a helium tank for unapproved use, one’s viral load becomes a tad less important. Oddly, I still took, take, my Wellbutrin.

After a month and a half off meds, I noticed something. I started feeling better. My bathroom visits were not nearly as frequent. My fevers not nearly as bad, nor as often. My fatigue started to lift a little, at least to the point where I finally noticed the mess I had been living in. I still have much to clean. I started working out again, tentatively at first, now with some enthusiasm.

I started going out again, to visit friends. A couple of times, I even went to a bar to watch Karaoke. Got flirted with too, though that could have been the sweater. It’s a really nice sweater.

But I was avoiding the doctor, and the blood draw that would surely peg me as a Bad Patient. I avoided him for two months. Until this week, when I decided to be totally honest, practice a little of what I preach. My goal in life is to minimize my hypocrisy. I know I can’t totally eradicate it. I mean, it comes in handy way too often, like white lies or hair gel.

Anyhow, I did it. I risked being bumped off the patient list, risked having to once again search for an ID specialist (and probably continue the same avoidance regarding meds and adherence). Thing is, I have been on meds, on and off, since 1993. I KNOW what they do, and I know that they impact me pretty strongly. I know this from experience, and I get so tired of doctors telling me to try them anyhow, because this time it will be difference. I was starting to get Battered Wife syndrome from going back, knowing what lay in wait for me, every time. I had had enough. Have had enough. And I stopped running, stopped pretending, and told him.

It wasn’t only the physical symptoms, but just treatment fatigue in general. Some people can do this adherence thing with the meds. With some people, that particular discipline is a strength they possess, and possess indefinitely. It is not mine. I have many strengths. Well, a few, anyhow. But not that.

So it all rushed out of me, all in one run-on sentence. And when I was done, I felt relieved. No matter what happened now, I was being honest. For what little it was worth, I had reclaimed a little of my integrity. And believe me, I don’t have any extra to spare.

He leaned back in his chair, and looked at my chart. In September, my T cells were 140 and my Viral load a cool quarter mill. It was obvious then that I was off my meds. My resistance testing, which is useless in picking up latent pockets of HIV, showed me sensitive to almost everything. Another good sign I was off my meds, because that wild strain does not become predominant when a person is chugging Reyataz and Norvir.

He knew, he had to have known.

And he said that it was okay. Not what he would want to happen, of course, but it was okay. He wanted to revisit the issue in February, and wanted me to take the bactrim and the Wellbutrin and the allergy meds, of course, to stave off wicked infections and the crazy. But he said he understood. We agreed that the notion of these lifelong cocktails was a very new concept, and that many people were in my very position, especially after a few years of side effects. He also said that he respected my choice to live the best life I could wrangle, even if it meant shaving decades off the end of it. He also said he would be there for me, as long as I wanted him to be.

I left the office feeling like a weight had been lifted from my shoulders. Sore from the flu shot and the half gallon of blood drawn, but feeling like I had faced a fear and walked (staggered) through it.

I want to live more of my life like that. I called a guy I had dated in October, then disappeared because I was afraid that he would not like what he found out about me. Left a message, and maybe we can meet for lunch and revelations. I’m on an honesty kick, and though it might cost me, at least I will be able to say that my fear is not as great as it was before. And I have made far too many choices based on fear in my life… and not a one of them turned out well. Fear is my enemy, moreso than HIV and AIDS. AIDS can, and probably will, kill me. Fear makes me dead already.

Not so cool with the dead, not anymore.

I have even been hesitant to post this on aidsmeds.com, because I was afraid of setting a bad example or looking like an idiot or getting judged by the peers I respect so very much. But I can’t live like that, and certainly can’t maintain any integrity by being flagrantly dishonest.

I am off my meds. Indefinitely. This is not a STI. This is a choice. A choice I can revisit any time I want, but a choice I have made, for today, to determine the course of my life.

And whatever questionable value this choice, any of my choices really, contain, I am comforted by this: I am still alive. I have had PCP four times, cancer, parasites, crazy brain swelling, neurosyphilis, and a host of other infections related to a depressed immune system. It’s been over ten years since my AIDS diagnosis and first OI, and yet here I am, still here. Crappy drug adherence, drinking too much at times, sleeping around too much at times, dating people whose mission in life seemed to be to kill me with stress, and I am still here.

My body might not like the meds, not like them one tiny bit. But the damned thing’s got some endurance. It wants to stay here, and for today, for this moment, I am inclined to support and encourage that decision.

I gotta run. I don’t want to be late for the gym.