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New Testament |
NEW TESTAMENT 1996
to May of 1997.........
It has been nearly a year now since I last wrote "my testament" to my survival, or MY SURVIVAL BIBLE. The information that follows is a brief synopsis of one person living with HIV, mine. Please understanding I am not suggesting any individual follow or attempt to duplicate experiences, therapies, choices, etc. THOM IS NOW 14 YEARS HIV POSITIVE! ! So much has happened during this last year, both exciting and depressing. Thank you all of you who have visited my site and have sent remarkable, heartfelt letters of support. You have kept my crazy self going. When my last entry was made in June of 96 my health, career, and life was going great, yet very, very fast. By July of 96 my body gave out. After almost two years of travel, speaking, and supporting others Thom had little left to give, myself or others. My T cell count dropped to my low of 239 and my viral load climbed to 5,000. Naturally I panicked. I knew (believed) something was wrong. My body was worn physically, and I was emotionally drained. However, no signs of any opportunistic infections or disease progress, other than my lab work and the fact I felt like crap. Unwilling to wait for more to happen, I canceled all my engagements. (Including fire island's Morning Party, which by the way I will not miss this year,1997, come hell or high water.) I will not miss this year.) Certain a "rest" would help I stopped everything. With HIV/AIDS, I have always believed and said you have to take care of yourself. Well, obviously not practicing what I was preaching, I decided to take my own advice. My next step, the doctors office. My first questions with my physician were about the new protease inhibitors. Bothered by headaches, lethargy, sleeping way too much, lack of appetite, etc. My physicians first response was it was all in my head! (Most people have heard this before.) I wanted to have something new added to my treatment regimen, my doctor is telling me it is not necessary, so I disappointedly took his advice. It is now September of 1996. I have now submitted more blood to the lab with the intention of determining how my immune system is functioning. The results now show my T cell count is 220, my viral load is 3,000. My T cell count is down and my viral load is down. What does this mean? (All these damn numbers make me crazy.) Against my doctors advice I demanded a protease inhibitor. My regimen at his point now included AZT, 3TC, and the protease inhibitor Saquinivir. Before I go on. Let's get this clear, THIS IS MY EXPERIENCE, OPINIONS AND EXPERIENCES. I AM NOT BASHING ANY DRUG OR TREATMENT REGIMEN. I HAVE SEEN THEM WORK MIRACLES. HOWEVER, MY PERSONAL EXPERIENCE WAS AS FOLLOWS: I started taking Saquinivir. Shortly after beginning the therapy, to say the least, my body felt dead. I couldn't get out of bed, my inspiration and desire to be around people vanished. FORGET THE GYM! For Thom it was major depression time. (If you have never experienced these feelings, trust me, they are indescribable.) As far as I was concerned I might as well have been dead. I BELIEVE THAT QUALITY OF LIFE OUTWEIGHS THE QUANTITY! Soooo...... I began to ask questions regarding other people taking the same treatment regimen. Contacting including Long Term Survivors, GMHC, APLA, etc. This all in an effort to determine if these experiences mirrored those of any other people. I was concerned, was this the disease, the medication, me? I knew from everything I had read that my drug regimen was helping thousands of people. Concerned that not having suffered opportunistic infections or disease progression, had I made a mistake in insisting on the current drug regimen, to include a protease inhibitor (Saquinivir). Well, I decided to bite the bullet and continue to take my current drug protocol. (Remembering I am the one that had insisted on it.) NOVEMBER OF 96........YOU CAN TAKE ALL OF THESE DRUGS AND SHOVE IT!!!! I was so tired of waiting to feel like Thom again. IT IS UP TO GOD NOW!
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