I was diagnosed with 14 t cells. There wasn't any meds back then. HIV meant AIDS and that meant death. I pressed my doctor for what he thought and he told me I had probably 18-24 months to live. I was afraid and angry. I was on 1500 mg. of AZT a day and it felt like poison. So I just stopped taking it. I got down to ZERO t's after a time. I tried Ritonovir and it made me sick as a dog so I quit that too. I started on Crixavan and after a time I saw some improvement, but people all around me were dying. In those early days there wasn't a lot of information online like there was now, no internet to ask people questions. I attended support groups and asked people who their Dr. was and what drugs they were on. It seemed like everyone that had a certain Dr. and was doing certain drugs were dying. I had the good Dr. but there still wasn't any good drugs.
Even though they told me I didn't have long to live,and I was afraid deep down I didn't believe it was going to happen. I read where the survivors had strong religion and were agressive about their treatment. So I joined the religion I always thought of myself as and became a student of it. I read everything there was to find about AIDS. I got involved with the community as much as I could, spoke to some kids at a few schools, got trained in peer to peer support stuff.
These were some tough years. It seemed the first few years I was back in the hospital with different oppourtunistic infections. Spinal Meningitus, Cryptosprodium, and sometimes stuff they never did figure out was the cause. But everytime I bounced back. But I was wasting away. I got down to about 135 pounds and I was sure the end was near. I had an excellent Dr.that I owe my life to. He put up with me, even though I was often angry. I was jealous of him. His wife sort of reminded me of my ex wife, who had left me a few weeks before I diagnosed.I was jealous of everyone then that had an immune system, including my dog. I would meet fellow patients that had 400 t cells and secretly wished I could take them out back and steal a few hundred off them. In my anger and fear I did things that I regret now. I drank heavily and tried drugs that I never would have before. I lived very recklessly thinking I had little to lose. From the moment I diagnosed I never slept much at all. I had at one time every sleeping drug on the market, the heaviest of the heavy duty, Seconal, Tuinal, Nembutal, Chloral Hydrate…. .
I took a trip down to Mexico. I drove my car to the border and took a bus clear to Mazatlan. I was there to party I guess. Unable to sleep I went for a massage. It was kind of a mystical experience. The man who gave me the massage told me I had a lot of regret and that I was holding it in my forearms. He used something he called " red smoke" which indeed was red. He made the smoke and waved eagle feathers over me at the end of the massage. He then opened two bags and told me to put my hands in and select one thing in each hand. I was afraid of what could be in the bags of course. In each hand I reached in and came out with two little polished stones. One red and one clear, he told me the names of them which I have forgotten and told me to keep them with me.
After I got home my labs started to improve. 200 t cells. Then 400… . Then I took a viral load test. 750,000. Not terrible but not great. I kept on with the Crixavan and eventually I got to 0 viral load and t cells that went to 800 and then, 1000, and even as high as over 1200. Finally I had some room to breathe.
The above story is one of fear and doubt. But it nearly pales to what happened next. It was in October and I took a flu shot in my doctors office. Shortly afterwards my little toe was numb. Then my foot, then I had trouble climbing stairs. I was weak. Then I could barely walk. By the time I got to the hospital I could really barely walk. Within a few days I was diagnosed with Guilliam – Barr Syndrome and was in ICU hooked up to a mess of drugs and as much morphine as I wanted. I was eventually completely paralyzed, unable to wink or even whistle. I was again afraid for my life. After a couple weeks in ICU and a few days more in the hospital I got sent to a rehab facility. The pain I was left with was a numbing pain in my hands and feet very severe. When I told the Dr. that the pain meds helped with the numbing, she said " You can't use pain meds for numbness" And then wanted to put me on anti depressents because she said the side effects were good for pain. That didn't sound right to me. So I checked myself out of there and got rehab in home. For about 6 weeks I was still in a lot of pain but was improving. I didn't have much feeling from the waist down. I was afraid I would never be able to hike in the woods again. I was afraid I could never have sex again. It was a rough time to say the least. I eventually made a full recovery but to this day probably only have 75-80% of my strength back.
Life went on, with it's regular ups and downs. My health has remained stable. Lately I have had some setbacks in other areas not related to anything medical and have been in a bit of a blue funk about it. My parents are gone now as well as someone else I was close to. My fortunes have risen and fallen and risen again. I want for nothing material in the world, yet I have been a little down about things. Whether anyone ever reads this or not is not important, I needed to write it for me. Because I really don't have any reason to be sad at all. I am blessed to even be alive today and sometimes I need to remind myself of that. Yes, I am losing my hair and some of it's going gray. Yes I have spent a small fortune at the dentist lately. But you know what? I need to remember that I am blessed, that G-d must love me and have a plan for me, Because G-d has chosen to let me live. I am lucky to be alive and I write this tonight to just remind myself of that.
While I am certainly very happy that the life saving meds came along, I do miss the days of activism and community. However with all the work we old timers have done about prevention, I am a bit dismayed that it has fallen on deaf ears to many. It seems like some young folks have the attitude that it's no big deal and " well there are pills for that now… ."
I am still hopeful that a cure will be found and we can all go back to being "normal" people again.
Interesting story… Must have seen so much… Thanks for sharing