since last I wrote. While I have felt ok, even pretty good sometimes, my CD4 count is still just 13 and my viral load is hovering above 100K. Dr. Lelezari believes there is a combo becoming avalable soon that maybe I'll respond to. I want to try and go back to work. I need to get in touch with someone who can direct me how to make the transition. I'll need to pay off old credit cards. AYayayayahhhhh....

Well it has been a while since I've written. I went into hospital on April 3 for a skin rash and fevers. I was admitted through the ER where they presumed I had PCP and began to treat me with Septra/Bactrim. They upped my dose from 1 tab every other day to 2 tabs every 8 hours. This sent my fevers up to 104, made my heart lose ti's rythm, and generally caused my condition to deteriorate. After 36 hours of me getting worse, the doc began to suspect that I was having an allergic reaction to the Septra. They then stopped all antibiotics. But by this point I was so sick that they kept looking for some other cause. I had MRI's, CT scans, a broncosopy, x-rays, a skin biopsy, and far too many blood tests to keep count of. Still they didn't want to conclude that Septra was the only problem so they did more tests. When they got to the point of talking about a bone marrow extraction I said NO. I was not going to do that given that they had found no evidence of anything wrong except for the skin biopsy which showed I was having a drug reaction. They seemd to be on a fishing expedition for anything to blame my condition on beside just the Septra. I think they were a bit scared of laying it all on Septra as the increased doses of it they had given me turned out to be the exact wrong thing to do.



Jon, of course, acted as my advocate and did his very best to see that Iwas treated well, quickly, and without discomfort. He is a God-send and I don't know what I would do without him. I had many visitors. Mom came down to see me and brought me much comfort by doing so. Dana came to visit too and brought the loveliest Easter basket. Sister Lily White visited me almost everyday and often twice a day. Luckily she works at Kaiser and was able to give us inside advice which helped us navigate the Kaiser bureaucracy. Sister Jane came by as did Novice Sister Mary Ralph, Gary E., and Laurie and Dr. Johnson. Knowing that so many people were pulling for me gave me that much more motivation to get out of there.



I felt so much better once I got home. The doc wanted me to stay an extra day but I knew I'd feel better in my own home. And I did. And I do. I am still fighting the fatigue that accompanies AIDS anyway but I think has been exaserbated by the whole Septra experience. Since I can no longer take Septra I will have to go once a month to the hospital for aeroslized Pentamadine, a breathing treatment that will help prevent PCP. I have also enrolled in the DUET study which is looking at 2 experimental drugs called TMC114 and TMC125. Don't ask me what they do as I really don't know. I only hope that they may give my body some respite from the constant assault of HIV. Otherwise, I am looking at a future which will be pockmarked more often by sudden hospital stays and unanticipated illnesses. Either way I will strive to use what's left of my life to improve the lives of others.

I currently have 2 T-cells. Not much of an immune system biologically. Guess I have to credit faith and will, along with the love of those around me, for my momentary survival. I hope I make it to black veil.

Well here we go again. The Pfizer CCR5 inhibitor I've been taking is not working and they asked that I stop taking their med. They want to see what happens when it is removed from my regimen. While on it my CD4 count went from 5 to 0 to a current total of 9. My viral load went from +/-200,000 to a high of 631,000, recently dropping to 550,00. All this while on the actual drug. My most recent tropism(the type of receptor on the HIV cell) came back as both types, CCR5 and CXCX4. THis means that the med was not suppressing the CCR5 totally.



I asked if they had any idea as to why this would be happening. I was told they had no idea. I was the only patient they had with this response. I was told, "You are a case-study unto yourself." For some reason my body does not respond to meds as it should. Yet I am in fairly good health given the events of the past year. But it is only a matter of time before I get sick again. And God knows what it will be. The Sisters I have gotten to know, and the prospect of joining them, provides a great deal of comfort to me. Spending what is left of my life to make the gay community, and the larger world, a more hospitable place has been the calling I have been preparing for all my life. I always knew I would die in the service of gay people. And that is just what I intend to do. I am so eager to earn a veil now that I think of it everyday. I pray that I live to become Fully Professed.

I ran out of Prozac and now after 3 days I am feeling manic. I feel wired and tired, pissed and overjoyed, unsure and absolutley certain. I told Jon I was pissed becasue he wouldn't go to the Eagle when he and I were in the city yesterday, he wouldn't suggest it. But today, when he's over in the city alone he's there and the Lone Star. It's like he doesn't want to be seen at the bars with me. Or, I don't know, but it has been this way for a long time. If we are over in the city and trying to find something to do he will never suggest we go to a bar, and if I propose it as an option then he'll find some reason why not to go. I told him I wasn't pissed that he went out but that he regularly excludes me from going out with him. I asked him to tell me why. I think I at least deserve to know why we can't go out together. I'm not so pissed as I am hurt. That's it my feelings are hurt because it feels as though he wants the attention he gets when he goes out but doesn't want me to get the same type of attention. I sit here alone...in my house...in silence...racing