Jonathan's POZ Blog

So I am staring at my pile of pills. Two Kaletra, an AZT, two Invirase, Bactrim. Add to the mix a Claritin and a couple of Tylenol for the inevitable headaches. I will wash it down with a teaspoon of Mepron, and make sure I eat a decent meal with it, though the meds have made my taste buds interpret anything as metallic. I’m bitching, I know. Worst part? I isolated myself from anyone who might want to come over and hang out, mainly because Kaletra gives a person gas beyond my capacity to articulate. It's the worst of stuff that's why forensic examiners dab Noxema or Menthol ointment under their nose before unzipping the body bag. It's like being an overinflated bag of humiliation. But I digress.

Thing is, I have a viral load well over 500,000. I have roughly 40 T C ells left to play with. My round of PCP has left me weak, tired, skinny, and far closer to the other side of the dirt than I would prefer. I would love to have more time to research the meds, to wait for the next development, to fundamentally change my life, my personality, address the myriad of issues which have historically impacted my adherence to and management of the highly effective, yet highly toxic meds available for HIV treatment. Many of the meds I have tried in the past have been reformulated, reconfigured, made easier to tolerate and at lower doses. Many more meds, including some great integrase inhibitors, are set to be released as early as April or thereabouts.

Time, though, it a luxury I don’t seem to have. When I asked my doctor what the difference was between starting a med regimen NOW and waiting till, say, April for the new stuff, he just looked at me and shook his head. I have lost about a hundred T Cells since I started getting sick in August. Don’t have a hundred more to go. Zero, apparently, is not a good number at which to start HAART therapy. And he said point-blank that I would not be in good shape if I waited. So he put me on this, older regimen (with an added extra PI boost of Invirase) to tide me over, start reconstructing a semblance of an immune system, and beat back that viral load while we all wait. Wait for the better drugs to become available.

But while I wait, I stare at the pile of pills. Twenty one pills a day, not counting the liquid PCP treatment/preventative or the clonazepam that helps me to sleep at night. And ten of these pills carry some side effects. Honestly, the old formulation of Kaletra (the huge orange gel capsules) gave me FAR worse side effects than these have done so far. Still, with as beaten up and depleted an immune system as I seem to have, my favorite rooms in the apartment have been the bed and the bathroom. Old Kaletra = scarcely controllable explosive diarrhea seventeen times a day. New Kaletra = shaves that down to ten times a day, give or take my amount of caloric intake or the stupid notion that I could walk to the laundry room and back.

So for the time being, I am on these drugs, side effects and efficacy with which I am very familiar. And each time I put the pile in front of me, I cringe. They are nasty, nasty things. But something in me wants to thrive just a touch more than it wants to be merely comfortable.

My adherence sucks. My history with the meds sucks. But whatever I have done, I have turned what could have, maybe SHOULD have been a plummet to the earth into a semi-controlled glide. It’s taken me a LONG time to get really sick, and my failed attempts, a month here, three months there, to adhere to therapy have bought me time. Time for the next big thing to come out, time for the research to move just ahead of my virus and it’s destination. Time for me a embark on crazy stuff that everyone does, from self-medication to serial dating to growing older, gaining gray in my hair and some perspective in my heart.

But time’s up.

So I gag down the pills, at the cusp of feeling JUST a little better (my body’s signal that its time for more toxicity). I settle in for an evening of television, ferret cuddling, extended moments to the bathroom, and horrible gas. I pour some more Coke Zero out of the can. I wait for the foam to settle before taking the glass to my lips. Giving it time.

Giving time to the both of us.

I had some energy today, and decided to write two blog entries. One dry and boring about Kaletra and maudlin stuff like dying, and racing time, whatever.

This is the other one.

My best friend is giving me two birthday presents this year. My birthday which, for those following, is Monday January 29th. And yes, I will be 41.

The first is practical. A NEW battery for my iBook! No more racing to grab the adapter after fifteen minutes of web surfing or writing. Apparently two or three years is all you get, when you use it as much as I do.

The second? Not practical, which to be fair, is the way I prefer giving and getting gifts ☺. He and I are going to see Cirque de Soleil tonight! The huge, multicolored tent has been a yearly staple of the Atlanta area for a long time now, and I have always wanted to go… but at ninety bucks a ticket? No way, no how. Except my best friend, the one who took me skydiving when I reached 38, decided to take me. For all his faults (and yes Adam, you have them) he is a terrific guy, and a good friend. Honestly, I would have been happy just to hang out at home and play Scrabble. And part of me is worried about keeping my crap together (in every sense of the term) for the time it takes to travel, park, walk through the arena, see the show, and whatever happens after. But a few well-times med dosings and a banana will… might … make an accident less likely.

I firmly believe that we are not kept alive by medical means alone. And we are not made whole by the stuff we acquire. No, I think it’s the connections between people that give us roots in this world, in this life. For some, its animals, for others, lovers, for others still, friends and family. I am fortunate beyond the telling of it to have found a little of all three. That makes my whole experience here worthwhile.

People have made the mistake of calling me brave. I’m not. Seriously, I’m not. I got something better. I’m loved.

Loved wraps brave like paper wraps rock.