Hello all -
Its been a long time since I posted anything, but you will see through this post, that it has been a very very crazy time for me. So here it goes:
about 3 weeks ago, I woke up looking at a pile of hair on my pillow, since I knew I didn't have a cat (especially not one that used the same shampoo as me), I ran my hand through my hair and came back with a handful of hair!! I ran to the bathroom and looked in the mirror as I was effortlessly removing handfuls of hair from my head. I called the doctor and he was not nearly as concerned as I was, but ordered some more blood work on me. I went to work and flew a four day trip, by the last day, I pretty much looked like a dog that had mange...little bald patches all over my head (my mom was sure it was only I who noticed it...she made this observation via the telephone not actually seeing my tragedy, and Tony , oblivious to all around him sometimes, said he didn't see anything) I got called into my supervisors office when I returned from the trip. It seems another flight attendant saw me and wrote me up...she thought I had something shaved into the side of my head!!! After that embarrassing ordeal, I decided when I got home I had no choice but to shave off all my hair. Right now I look like Powder (but not as skinny or as wierdly hot) cuz I have not hair or eyebrows.
A few days later, the doctor called and said he got some of my lab work back. He asked if I was sure of my HIV diagnosis. I should point out that this is the doctor that I didn't like very much anyway. I laid into him... of course I am sure, I have been living with it for over 2 years. He let me finish, and explained that in researching my records he has found that every time my counts had been done (only when I was really sick) that my CD4 count (t-cells for those of you not in the know) would be all over the place... sometimes super high, other time super low. My viral load is a different story...it has always been undetectable. My new docs theory was I was too sick for my viral load to be undetectable... it would go against what HIV is all about. It's sole purpose is to wait for the body to be weakened and then replicate and attack, but that wasn't happening. He asked if he could do another HIV test. I told him I thought he was crazy but I would consent to the test. What I didn't tell him was that I had gone to the Holmes Clinic in Cincinnati (and HIV research hospital) for a second opinion right after I had seen him the first time. The clinic had taken a ton of blood for various tests, and some extra because I had consented to be used for studies. I called the clinic and told the doctor there what the other doctor said...he promised he would call as soon as he got my lab results back. he called the next day and told me that he thought perhaps my doc was on to something, my counts were virtually the same (very high CD4 and no viral load) he sent my study blood off to be tested for HIV proper.
Now would be a good time to point out the history of my infection...after I found out I was positive (I had expected it to be poz) I freaked out. I got scared and never went back to a doctor till I got really sick and had no choice. I would placate friends with fake doctors visits cuz they wanted to know I was taking care of myself... but the fact of the matter is I HATE doctors and I was scared, so I would just say "good news, counts are great" and move on...never actually knowing what my counts were. When I would get really sick I would reluctantly go to the doctor and tell him "by the way, I am HIV+ just in case that has anything to do with this" The doctor would say ok and run my counts just to be sure the HIV wasn't out of control, and would always report just as my new doctor pointed out, various CD$ counts and undetectable viral load... to the unsuspecting doc that was great news. It meant the HIV was not taking over and it would be easy to treat whatever I was sick with.
Fast Forward. Lab calls back and the doctor confirms there is no HIV... I am HIV-. The bad news is, that there is obviously an immune deficiancy problem, but they don't know whats causing it. The good news, I don't have AIDS. I didn't know if I should be happy, angry, sad, or scared.
For over 2 years, HIV has ruled my life, it has completely shaped who I am and affected all my relationships. One of my dearest friends in the world came about because of an unfortunate situation regarding my HIV and his boyfriend (now of the ex variety). All of my friends had only known me as poz. My pledge brothers helped me deal with the news, my pledgemaster quietly keeping me from slipping into a bottomless pit of depression at the hand of the disease that I was convinced was going to take my life and that I would inadvertantly pass to all those that I cared for. My big brother getting visably angry when I compared my body to a toxic waste barrell and if the skin were punctured the poison would leak out and infect everyone close to me. I was suddenly faced with "oh by the way, nevermind." In my mind, at the time, this news undid all of those relationships. In my mind the foundation for those relationship was just taken away. I was clearly not thinking in the right direction...I was trying to trivialize my friendships into being about something physical, for a brief moment I forgot that all of my friends and relationships have a much stronger foundation than a virus that may or may not be, but rather built on a foundation of honesty and trust, and mutual respect. The vast majority of people I call my friends are my Brothers...each one pledged to treat friendship and brotherhood with the most love and compassion that can be musterd. I have found that the few friends that I have that are not brothers have the same respect and compassion for friendship as the men of my fraternity. I realized that I can't undo the last 2 years, I can only learn from them, and move forward. I have a lot more to say on this, but I will wait for another post. In the meantime, Andrew, Ernie, Tony, Matthew, Dominick, thanks for being my foundation, and helping me keep it all real and in focus...
liljoeblues window on the world
my thoughts and ramblings about the world at large...