There. I hope I’ve addressed your question. I am not well. I have never been well. But I continue to function.
I still do not see the correlation between HIV and my health; only a correlation in increased medical problems when I am taking the ARVs.
Who and why did someone type “jonathan barnett resistance dead?” into a Google search?
Was is it someone who had been missing my thoughtful, creative and witty writings? Someone thinking I must have died from not taking drugs for HIV? Someone wondering if I had died yet because I had started taking ARVs (at greatly reduced dosages) again?
When I received my HIV diagnosis in 1998, I withdrew from my community of gay men. I “went to ground”, thinking that isolation was the only safe place to avoid being criticized for seroconverting at such a late date, when we were all supposed to know better.
This past week has been yet another bifurcation point in my life. I returned to a community I have known about, if not been a steady part of, for more than 30 years. A community of men whom I could touch and hug. Men whose tears might wet my face and whose body heat and life forces I could feel in ways that can only happen in person. It really did feel like coming home.
John McNair, a musician and a philosopher from Perth, Australia, is something of a counter-cultural role model. McNair has created a very wide-ranging collection of podcast interviews with people who might get overlooked in the larger, mainstream media. I met John on Facebook a few years ago and we quickly established a rapport with each other. Last week […more]
Frankly, in the end, I really, really don’t care what causes AIDS. I just want people to stop suffering and dying from whatever it is. It appalls me deeply that after all the hundreds of billions of dollars in research — possibly more than that spent on researching all other microbes combined — HIV research has ‘succeeded’ only in giving patients the horrifying choice between either dying slowly of Opportunistic Infections associated with a damaged immune system, or dying slowly of Liver Failure or having your skin peel off or maybe a Heart Attack caused by HIV drugs themselves. All the while ignoring the patients who do just fine for rather a long time when left to pursue their lives unmolested. So pick your death.
I’m feeling… something. Older, perhaps? I fear I have so many things I want to accomplish so I can “retire” with some degree of comfort; a bathtub I can actually stretch out and soak in, for example.
I am still recovering from the sudden loss of Gos Blank and watching from a distance as other friends struggle with their own forms of bizarre and crippling health. It makes me feel I have no right or business to complain about my own symptoms and signs.
As the winter solstice approaches, I am aware of what a noteworthy month this December is for me, in ways that have nothing to do with the holidays. Fifteen years ago this month I was informed that I was “HIV-positive”. Five years ago, I started this blog, primarily to share my experiences with both the diagnosis, as well as previous and new health issues. I will be sharing some exciting news about some changes that will be happening to resistance is fruitful a bit later in this post.
Meanwhile, I have been fighting severe fatigue again, and that has led me back into that dark place called depression. I don’t want to write about that, of course. I want to write only about successes and victories. Twice last month I felt the onset of shingles in my left eye. The first time I was able to send it into remission quickly and with no evidence of an outbreak. The second time, the inflammation persisted for nearly two weeks, and I am only now feeling as if I might have kept it from erupting into a serious and disfiguring outbreak, like the one that hospitalized me in September, 2012.
Most of us in his Internet online community knew Gos as a vocal advocate of the AIDS dissident community; a group of people who question and challenge the mainstream theory that the so-called Human Immunodeficiency Virus (HIV) is the sole and sufficient cause of AIDS. Yes, Gos was HIV-positive, but he insisted that the available scientific evidence does not support the notion that it is a sexually transmitted pathogen, capable of causing disease. Gos believed his positive test was a “false positive,” and the result of his pre-existing illnesses.
I am dumping a lot of summary information here, without getting into details, but I need to start somewhere. When I zoom out and look at the big picture, it is clear that I am still a long way from being a “healthy” person, and frankly, I no longer expect to become one. The goal now is to mange chronic disease and maintain as good a quality of life as I possibly can.