Friday, December 01, 2006


World AIDS Day revisited

This is a post I wrote for World AIDS Day in 2005. Due to power problems from the weather I lost most of the evening being unable to post anything new, so I thought that I would repost up this old post.
If things work out I hope to add another post after work today.

World AIDS Day is always a special day for me as I remember my past friends and loved ones and pray for an end to AIDS.

Thursday, December 01, 2005

World Aids Day.....
Today is World AIDS Day. The numbers are staggering. More than 40 Million people worldwide have AIDS! AIDS has killed more than 25 million people since it was first recognized in 1981. 3.9 million people died from AIDS last year alone and another 4.9 million became infected.
(figures are from a recent U.N. report)
In the US the number of new cases reported every year has remained more or less stable from 2001 to 2003. However, the number began to rise again since 2003.
Every hour 2 more young Americans are infected with AIDS!
The Human Rights Campaign issued a report card on our governments efforts this year. See for the details.
The main point is that our government rated an "F"in 2 of 4 categories, prevention and care & treatment. They only managed a D in research and a C in Global AIDS. The HRC has a online link to allow you to email your elected officials and let them know that this is not acceptable. Please use it.
On a personal level:
I have had far too many friends who have died from this disease.
I have also been involved as a caregiver and/or advisor to several persons.
My nephew Pat moved here from Iowa at age 17 so that he could come out and live life as the man he was. This was in the early 1980s. He and I became very close and it was extremely hard to take when he became infected with "GRID" (Gay Related Immune Disorder ) as it first was known. There was almost no knowledge and there were no treatments for it. All the doctors could do was to treat the symptoms by trying to keep the fevers down, etc.
I used to get up at night and hold him as he shook with"night sweats. "
Then I would change his sheets and he would go back to bed. I never felt so helpless in my life. Someone I loved deeply was so ill and I couldn't do anything! I had a nurse-call button clipped to his sheets and an intercom mounted to the wall by his bed so he could call me when he needed me. When AZT was released we were so happy that at last there was something he could take. However the first meds were all so toxic that they caused their own problems. He had to use suppositories to fight the nausea had to keep a pan beside his bed all the time.
It was a horrible experience to watch him slowly die. His death was the hardest I had ever faced. My parents had lived their lives and it was much easier to take. Pat, was so young,and I loved him so much. I would ask myself frequently "Why him? Why can't it be me?"
Pats ex, Scott, had become my best friend. Of course he was also infected, although he lived with his family and not with me, I was very involved in his illness. I was the one he talked to and asked advice of. Over a several year period I watched him get slowly worse. The HIV meds always had bad side effects on him and he was always miserable.Finally he became infected with CMV and lost the vision first in one eye then another. He entered a hospice program where they kept him comfortable but made no efforts to prolong his life. I was the only pallbearer at his funeral who was not a family member.
About this time Dan( my partner) became infected. When he was first diagnosed in 1990 he already had an opportunistic infection, Cryptoccal Meningitis. He was deathly ill and I had to run IV's for him every night at home. He has been hospitalized several times and I have seen his weight drop as low as 110 lbs.
Now he weighs about 160 and looks good because of medical breakthroughs in the past. The biggest difference between Scott and Dan was that Dan was never bothered by drug side effects. He always took his meds in the proper amounts at the proper time. He never missed. Also, the FDA approved trials of Protease Inhibitors in 1995 and I was able to get him on a trial while he was in the nursing home.
He did have a reaction to DDI and developed pancriatitis. His pancrease
went wild and damaged his lungs. He was in the hospital for 2 weeks that time, 10 days in ICU. He had previously had all his legal affairs taken care of and had given me his power of attorney for health care. When he was in icu I went against all the things we had discussed and put him on life support. He was on life support for 7 days while his lungs healed and he was able to recover. His family in Pennsylvania did not want anything to do with him, so I spent 7 days at the icu with him, going home only to sleep.
It was a hard period, but we got through it. I told in a previous post about his experiences in a nursing home and in the AIDS Rides. I am very proud of him for what he has endured and what he still does today.
So , for World AIDS Day I am pausing to remember Pat, Scott & Dan's close friend and nursing home roomate, James. They are especially in my heart today as I pray for them and all the others who have passed on before us. Deacon Harry

# posted by Deacon Harry @ 12:07 PM

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