My journey has been a weird, long, frustrating and painful one. It has also been enlightening, strengthening, and unforgettable.
I was once thought to have EPP, a form of porphyria, all of which are rare. After being treated for a year, I then underwent testing for a clinical trial. They found that I DIDN"T have EPP. So what was it? No one seems to know.
I still had all of the symptoms, intense reaction to the sun, swelling, illness. I also have Psoriatic Arthritis, which is a pain in the neck(and back, hands, feet....).So, I stand in a place where no one knows not only what, but why it's wrong.... we only know just that it is.
Now, I avoid the sun, have changed my diet to avoid the foods that I can no longer tolerate and rely heavily on my wonderful husband. If not for him, my beautiful children, loving family and friends, I would have, I am sure, sunken deeper into the mire of unanswered questions. God placed each one of them in my life to make me rich, especially when I feel the loss of the person I remember myself being. My God, my people and my memories are my wings.