Jonathan's POZ Blog

When I last posted, I was on the absolute cusp. Could have gone either way, and was so beaten down by over six month’s worth of exhaustion and pain that I simply failed to care much, one way or the other. I was, to the terror of my friends, cool with the notion of dying. And PCP, a particularly nasty pneumonia that impacts people with AIDS, can easily do just that. I was literally bedridden for four months, sleeping fitfully for seventeen or eighteen hours a day.

When I was finally diagnosed (and it’s a tricky diagnosis, especially for those of us enjoying the rather limited public health opportunities afforded by Medicare) it was moderately advanced. I was having trouble breathing. I was having trouble putting words together. I was honestly getting ready to make my peace, if such a thing is ever possible, and surrender. As someone who never thinks like that, I was even a little concerned. But mostly sleepy, mostly just hurting.

The Mepron helped, and continues to help eradicate the pneumonia. Of course, it does so at a cost of some side effects like pounding headache and relentless intestinal trouble. But I take the vile stuff, along with the Bactrim. One thing I can’t stand to take anymore is the AZT. I’m just done with that stuff. Even the Kaletra, with its charming oily side effects, is preferable. So I have been more or less determining my own therapy of a sort, to the resigned horror of my doctor. It’s no longer an all or nothing situation, so far as I am concerned. I take what pills I can, when I can tolerate them. The exception of course being antibiotics, because developing resistant strains of bacterial stuff is not something I want on my conscience.

So I have taken the past few months off from writing. Mainly because the computer screen gives me an eyeball-based headache. Also because I have been sad, and scared, and sick. And much of the time, asleep or in the tub thinking that THIS time, THIS hot bath will unkink my aching body. Never works, but I am the cleanest sick person I know.

I was amused in that several friends who had fallen out of touch called me and asked to hang out. Apparently they read my blog and assumed I was going to die almost immediately. Guilt or worry, not sure which, prompted the sudden interest. When they saw that I was in actuality starting to recover, they seemed disappointed. Maybe they wanted me to put in a good word with the Intelligent Designers. Ha. When I reach the pearly gates, I will be far to preoccupied trying to save my own skanky butt.

And then, a few weeks ago, a friend flew in from out of town for a visit. I really was in no condition to welcome her, but we got along so famously online and on the phone that I could not very well turn her away. Plus, the ticket was nonrefundable. I was still sleeping fifteen hours a day, and was unable to walk for any appreciable distance without coughing or involuntarily sitting down. But she assured me that we could just lie on the floor and talk. And to a great extent, that is exactly what we did. And I fell in love with her a little, during our visit. I have written, and am writing more about that on another blog. Due to some real safety concerns, I opted not to go into the details here.

So here I am, trying to do a measure of walking or light exercise every day I am able. Still taking the Mepron and still weak as a kitten. But no longer struggling for breath. And experiencing multiple days between soaking night sweats. So little by little, moving away from the edge it seems. It takes a lot of time, and a shockingly large effort.

I still feel as though I have passed a membrane with this illness. And I wonder how much of my former self will be returning. But I am not dead yet. I'm even writing a little again, even though it still makes my eyes water. That counts for something.