1998 lingers on…

So, I can’t recall all of the diseases I was tested for at this point in my life, but enough blood was taken from me to perform several tests with really long names.  At best, I remember thinking that none of them sounded good.  Porphyria Cutanea Tarda stuck in my mind all the way home.  I had a bad feeling about it, and I knew what that meant.  After looking it up and reading about it, it struck me as odd that things I found important in my life right then would be the very things I could no longer have.  Alcohol.  Seriously…no alcohol?  You haven’t met my family.  Sunlight.  SUNLIGHT.  This has to be wrong.  Lastly, birth control.  Aww, hell no.  There is no way I have this.  I am about to get married, and go on my honeymoon.  While reading about this disease, my parents tried to console me as best they could, but we all knew I had it.  I took the 24 hour uroporphyrinogen test.  Get ready for the results.

Normal people have anywhere between 50-300 milligrams in their urine.  I had 1500 milligrams.  I also had a ferritin test (a protein synthesized by the liver and is the primary form of iron storage within cells and tissues), which showed my levels as being over 550 at the time.  Again, way above normal.  Honestly, you almost have to be a doctor to understand most of the research I have found.  Some of the most interesting lore I have found suggests a link between PCT and vampirism.  I can assure you that I do not sparkle when I go outside.  Anyway, I digress as usual.

At the time that I was diagnosed, there were seven different types of porphyria.  The word itself is derived from the Greek word, porphyra, meaning purple pigment.  Here is where the pieces start to fit together.  What was the most noticeable change?  My urine was dark burgundy.  Wonder if Vlad the Impaler noticed a change in his?  Now, I am not a doctor, but I have studied words.  Cutanea means skin, and tarda means late.  I am told that this disease presented itself early.  I already knew why.  It wasn’t a surprise for me when I looked back at my youth.  Ha.  I was still all of 23 years old thinking this.

As the sunlight filtered through the trees, I put my head down on the windowpane and let a tear slide down my cheek.  A butterfly danced by on his way to visit the many flowers on my parents back porch.  I was getting married outside while the sun set over the water.  I had less than 3 months to get “better”, and by better it meant no burning of the skin.

“Through humor, you can soften some of the worst blows that life delivers.  And once you find laughter, no matter how painful your situation might be, you can survive it.”  ~Bill Cosby

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