THE MENANING OF LONG TERM SURVIVAL

am a member of an evergrowing community of long term survivors of HIV/AIDS. Persevering through the health challenges that have put me in the hospital for three months at a clip on several occasions over the last seven years has been an amazing learning experience. I have dealt with a fungal infection of my sinuses and braincase, total collapse of my spine, and numerous ancillary infections and managed to thrive inspite of what I was later informed were amazing odds. I have very little family around for support, but have had the privelege of knowing some truely loving people along the way that made the situation bearable. I am puzzled and troubled by the disappearing resources available for us long termers - of which I know more than a few. I am making it my job to advocate for the ever growing population of long term AIDS survivors who are learning the hard way that contrary to what the media publishes, the AIDS epidemic is not diminishing in America, and long term survival is laden with debilitating symptoms about which nobody talks. I look forward to tell their stories as well as my own in hopes of waking up society and getting us the services we so sorely need, but have had taken away.

I am soliciting the stories of other people who the system has abandoned. You see, after 20 or 25 years, HIV/AIDS takes its toll. Even though you might have a high t-cell count, and undetectable viral load, you still develop symptoms like debilitating fatigue, incessant diarrhea, crippling neuropathies, excruciating shingles, muscle aches and wasting, weakness, to name a few. These symptoms, while debilitating to a point of making full time employment impossible, do not classify one as disabled according to the government and private insurers, so support benefits that you may have paid for are unavailable. Life can become difficult to afford. Part time employment sufficient to support one's basic life needs is virtually non-existent. Frequent visits to the various doctors needed to treat some of these problems tend to run one's life. Medicine becomes insanely expensive. My typical monthly cost just for medications is over 10 thousand dollars. And guidance or case management is getting harder and harder to find.

My goal is to gather enough stories here to get the attention of politicians and anyone willing to lend a hand. I am fortunate to have just enough disability income to get by at present, at least long enough to complete nursing school and go back to work. I have spent a total of 4 out of the last 7 years either in a hospital or nursing facaility. I pray that my health holds out now but there are no guarantees.