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My Horrific Seven Months

By ScotCharles

June 13, 2012

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A psychologist comes to visit me every Tuesday at 8 a.m., courtesy of AIDS Project LA. I was very weak with fever, but we did our usual hour together. Peter, the psychologist, called Jim after our session to tell him that I seemed confused and disoriented. He thought I was having a crisis with my cognitive disorder and suggested that Jim call my psychiatrist. The psychiatrist was very concerned and called my IDS who had recently returned from her trip to Tanzania. My IDS, Dr. Shriner, upon hearing my symptoms arranged for an immediate trip to the emergency room. I thought I just had a fever probably caused by whatever bug the throwing up man had who shared Jim's room in the ER. I didn't feel I had anything serious.

At the ER, tests showed my kidneys, liver, lungs and heart were failing. My blood oxygenation was low and the doctors thought I may be having a recurrence of the PCP I had in 2004. I am allergic to Bactrim, which is usually used to treat PCP, so I was started on intravenous Dapsone. I had taken Dapsone for years after my bout with PCP. Almost immediately after the start of the Dapsone, my face turned beet red and splotches started to rise on my torso. My blood pressure and pulse began to drop. Somehow, I had developed an allergy to Dapsone. While the doctors were tugging their chins as to what to do, a nurse said, "Why don't we stop the Dapsone?" The doctors continued to tug their chins. The nurse said, "Fuck it!" and pulled the Dapsone whereupon the rash disappeared immediately. I passed out about this time and have no memories until I awoke a day later in the hospital.

When I awoke, the light in my room caused severe pain in my eyes and the lights had to be turned off and the shades pulled at the window. I had a catheter shoved up my penis. I had a shunt in my neck into which was pouring several bags of stuff. After several CTs, PETs, and blood tests I was found to have viral meningitis. One of the tests was a lumbar puncture which was botched by a neurologist I had dealt with years before when I first began to experience neuropathy and weakness in my legs. The puncture had to be redone the next day by a more competent doctor.

The tests showed that I had deficits on the right side of my brain and losses in long-term memory and learning ability. I developed a tremor that I have even now when I do fine motor functions like chopping vegetables or planting in my garden. After a week in the hospital I was released.

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I was very weak after my release from the hospital. The least effort tired me out. Spring in my garden is a busy time and I tried to do the necessary work but found that after a half hour I was winded and tired. It has taken two months for me to gain back my strength. I am much better now.

So what have I learned? First, to be thankful that somehow the Universe saw to it that both Jim and I were surrounded by people who could help us when we needed it. Second, that Jim and I need the support that AIDS Project LA and my doctors give us. We are very lucky that a person who could help us was there when we needed her. Community is important. And third, to be grateful for every second of life we are given.

Due to my cognitive problems, I have trouble with compliance with medications regimen. I am working with my psychologist on this problem. My heart attack has made me suspicious of the meds since they were a contributing factor to my attack. I have developed an aversion to the meds because of the attack, which I am working through with my psychologist. I am concerned that I have developed an attachment to the serenity I feel when I am seriously ill.

This last issue arises from a childhood experience of "Oneness" I had that I have never been able to replicate with drugs, meditation, or religion. When I had PCP and had to concentrate on every breath, I came close to my childhood experience. The weakness of my latest serious illness cleared my mind and gave me a glimpse of that childhood experience. I am probably too fixated on this concern that I have begun to love being ill. But, who doesn't remember the comfort of a nurse visiting you in the lonely hours of the night? I may be silly, but there it is.

Life goes on. The lilies are blooming in my garden. I have seedlings ready to set out -- bedding dahlias, sun flowers and dill. The birds are tearing apart the coconut husks I have set out for them to build their nests. The fruit trees are setting fruit. I sit in my garden in the cool dusk and marvel at the beautiful complexity of nature.

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ScotCharles

ScotCharles

ScotCharles was born in Mineral Wells, Texas. He has been HIV positive since September 1984, and received an AIDS diagnosis in April 2004. He graduated cum laude from Georgia State University in Atlanta, and got his MBA with honors at the University of Edinburgh in Scotland. He's also a certified public accountant and a member of the Honorable Order of Kentucky Colonels. He's been married to his partner, Jim, for 30 years. ScotCharles' hobbies are gardening and water color painting. He and Jim have a sable tabby cat named Pickles who runs the house. ScotCharles is a retiree and regular poster to TheBody.com's Bulletin Boards.


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