At least I have my ears…

Last night I could not sleep.  I did the same things I always do to get ready for bed, but sleep was elusive.  I ran everything over in my mind from earlier.  I took my vitamin D, glucosamine, rubbed the stuff on my sore shoulder, and heated up my heating pad.  My room was dark and my covers were warm.  Why couldn’t I fall asleep?  My shoulder has been hurting for a while now, and I have seen doctors about it, but I gave up after a cortisone shot left me in more pain.  I started taking glucosamine and sometimes it doesn’t hurt now.  That’s as good as I think it’s going to get.  My hereditary condition has been known to cause joint pain, so I consider myself lucky that currently only my shoulder is giving me pain.  I thought about how I was only 35 and had experienced an interesting array of health issues.  Then I cursed out-loud and remembered I was another year older.  I started laughing and said to myself, well, at least I have my ears.

To understand why that is funny, I have to go backward.  Researching my condition and studying the various websites took up a lot of my time when I first found out what I had.  The more I read, the more terrible it sounded.  This was over 12 years ago, and I didn’t know what to expect.  The unexpected is often scary where your health is concerned or the health of a loved one.  Over time, I learned what was normal for me and how I should feel and what to expect when I needed a phlebotomy.  It still takes me a while to “bounce” back, but I have a higher tolerance for exhaustion now.

I was talking to my mom about my newest discoveries.  I found something linking Phantom of the Opera to Porphyria Cutanea Tarda and I thought it was an interesting analysis.  Phantom was originally written by French writer Gaston Leroux.  My mother’s side of the family is French.  Erik wasn’t that bad, but supposedly he was born with a condition.  In later years, it was changed to disfigurement or a burn.  Who can say for sure if the lore is true?  Another interesting person of note, is King George III.  There is no proof that he suffered from one of the porphyrias, but lots of speculation.  Lastly, I mentioned good ole’ Vincent van Gogh.  I speculated that he cut off his ear because of his condition.  So mom says, well at least you have your ears, what would you put your earrings on?  And that my friends is how southern people cope.  We can make most anything into something to be thankful for.  My mom always says I take after my dad, but sometimes I think it’s equal.

“The way I see it, if you want the rainbow, you gotta put up with the rain.”  ~Dolly Parton

1998 lingers on…

The Vampire Disease

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 vampirismI 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.

“A good laugh overcomes more difficulties and dissipates more dark clouds than any other one thing.” – Laura Ingalls Wilder