A seed of Thought


As you can see, I’m muddling through this learning process at a snails pace.  The very idea for my own website/blog stemmed from my desire to share parts of myself with others, and also from a friend who believes that I have something worth sharing.

For the past couple of years, my life has completely changed from anything I had ever known.  I distinctly remember the beginning of the changes.   I had long known that I wasn’t “normal.”  Most of my friends are chuckling right now, because of my sarcasm and dry sense of humor.  But this normal was different.  At the age of four, I remember lying in my bed in Charleston, South Carolina.  We lived on a Naval base, and every morning my mother would come in and raise the blinds on my window to wake me.  As I lay there, snuggled against my Philsbury Doughboy doll, I remember hearing her open my door and the sound of her footsteps padding across my floor to the window.  As the sound of the “wooosh” of my blinds going up, I heard my ma scream.  It jolted me fully awake and I can only remember feeling very scared.  As I would learn later, her scream was the result of seeing her four year old daughter covered with bruises and blood blisters.  They were in my eyes, my mouth…everywhere.  I was first diagnosed, wrongly, with Leukemia.  Later, I was falsely diagnosed with ITP- a blood disease.  Fast forward forty-two years later and I was correctly diagnosed with EPP.  Erythropoietic Protoporphyria. Googled, it’s also known as Vampirism.  From the age of four the sun bothered me.  As I aged, I could spend less and less time in the sun without feeling as if my skin had been scraped raw with steel wool pads, and set on fire.  The magic number for me is three.  Three days of this torture after a long exposure.  I was in ERs, to specialists….for so many years.  Most thought I was crazy.  Or trying to get out of outdoor chores.  I learned to shadow jump, to go out at night or walk in the rain.  And from that very same time, I had a fascination with all things Celtic.  But that will be covered later.

After this diagnosis and worsening of my symptoms, plus a plethora of other physical disorders, my marriage of twenty-three years dissolved.  I moved in with my grandmother at that time.  We had always been so very close, and she spent many of my early years helping to raise me.  I moved in with her in June….and she was diagnosed with terminal cancer in August.  I spent that month with her in the hospital, and cared for her until her death on October 6, 2011.  I then had the enormous task of settling her estate.  It was a devilish few months.

Now, I live with friends and try to keep positive.  I’ve loved my job as a nurse, and a Registered Sleep tech.  But my health has stopped me from performing those things now.  I have been involved in a clinical study for a medicine to control the excruciating pain of the symptoms of EPP, so I have been able to attend many Celtic festivals and concerts that I wouldn’t otherwise get to do.  So in a nutshell, that’s where this seed of a thought came from for the website and blog.  At times I will expound on separate parts of my story.  But for now, maybe you will have a better idea of how I got where I am….and how I plan to get where I’m going.  Slainte!

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