I last posted here in March of 2007. In that month my p-doc added Lamictal from the kind folks at Glaxo Wellcome to my meds. I began getting dizzy and slurring words and called my doc about it after three weeks. He called me and told me to cut my dose in half but never saw me again. April 4, I remember Passover dinner with my family, but the next day I could not wake up and my wife took me to my primary care physician. They gave me sulfide eyedrops, which I now know to be about the worst and furthest thing from helping me. I was shuffled through several ERs before a dermatologist identified a rash on my neck as what was likely Stevens=Johnson Syndrome, a very rare allergic reaction to medication that causes the skin and mucous membranes of the sufferer to burn and blister.
I was rushed to the top burn unit in Seattle where I was immediately put into an induced coma that lasted nearly three months as my body burned and healed and burned again. My throat was the last to stop bleeding and I received numerous transfusions and much professional attention from the ICU unit and prayers from friends and family. I swear they had me on a gallon of methadone and other stuff a day, "milk of amnesia" the staff called it, and I left my body many times and journeyed throughout the universe to amazing and terrifying places alike. When I came to my skin was totally new, I have no blisters thanks to the use of pig skin on the blistered skin. Don't know what my rabbi has to say about that one.
My eyes were damaged by corneal burns but I found a place in Boston called the Boston Foundation for Sight that hooked me up with scleral lenses, over-sized contacts filled with liquid like artificial tears. I am growing used to this prosthetic and can now see at least as well as I did before the nightmare journey began. The last health frontier has been my throat, I was getting all of my food through a g-tube, but just two weeks ago they found and removed a blockage in my esophagus. I hope to be eating and drinking rather normally soon. This horrible disease is called Toxic Epidermal Necrolysis or TEN for short. It has turned my life as one of the last members of the middle class into a living hell. New Year's Eve my wife told me she couldn't handle my emotional roller coaster and asked me to move out. Our course has not flowed amicably since and there is a child in the mix.
While I was in LaLaland I dreamt that the presidential election was going on. Hillary Clinton had come out and looked like Roseanne Barr and several rock bands were also running for the highest office. A couple from Portland who were in a band and used to be married won the election. They were also junkies and had to be monitored by the Surgeon General and pass UAs. You can see pix of me in my best imitation of burning man at
http://www.brink.com/style/3555. I am so happy to be back in the real world although there are days where I shake my head and sing along with Peggy Lee..."is that all there is?" Sending love to all my fellow fighters for change and justice....David
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