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Pinckney D Rivers

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· Magdalene Chronicles in KINDLE

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Books by Pinckney D Rivers
Confessions of a Porphyria Patient
By Pinckney D Rivers
Last edited: Monday, May 10, 2010
Posted: Monday, May 10, 2010

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Recent articles by
Pinckney D Rivers

• Opening a Writer's Retreat
• 2012 into the future
• Gambling on Ornaments
• I Love Beach Music
• Cats are Smarter than you Know.
• The Right to Death With Dignity
• Can I Do-It-Myself?
           >> View all 17
porphyria is a rare genetic disease; living with it.

  The first time I walked into your office I was both nervous and angry. I was nervous to see a new physician and angry that I was having to do it. I managed to smile until you grabbed my left wrist and twisted it over to show the scar that runs from my wrist to the center of my hand. "WHAT HAPPENED HERE?" you demanded. That made me even more mad. I knew what you were thinking. You thought I had tried to commit suicide. What a crock! I copped an attitude and looked at you with disdain. "It's a scar from a carpal tunnel surgery done by Dr. Luke Sampson at NHRMC on 2/13/ of last year" I said. I still haven't finished my occupational therapy.  You DID have the grace to look taken aback. But that didn't stop the inquisition. First you asked me if I was married and when I said no you wanted to know if I had multiple sex partners. What the heck did that have to do with my visit? Right then and there I almost got up and stomped out but my Southern upbringing and my training stopped me.  I explained to you that I had been divorced for 4 years, had NO boyfriends, and probably never would unless I could get the pain in my gut stopped. You said  there was nothing wrong with me. It was all in my head.

       Then you decided to call one of your teachers at med school and tell him my strange symptoms: stomach pain; sensitivity to the sun; funny little blisters on my toes.  He said you should send me up to see him. And three weeks later he called to tell you I have a rare genetic disease called Porphyria. Good news; I am not crazy. Bad news; there is no cure and no treatment.

      I went home and started to learn everything I could about Porphyria. This wasn't easy. It was 1978 and little was known about it. I got in touch with the American Porphyria Association. They sent me information for myself and for my doctor. Boy! You sure were surprised. Luckily you decided you needed to study up on orphan diseases. You tried very hard to help me through a difficult disease for many years. You didn't start out believing me but ended up learning that not every thing YOU as a doctor can't explain is "ALL IN YOUR MIND". 



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