For the first time in my life, I can relax.
Growing up was very isolating. I spent an enormous amount of my childhood by myself, mostly recovering from burns in our cool basement. I spent so much time alone, I did not know how to function socially. Something I severely struggle with to this day.
My early years were a series of Dr appointments, I wasn't symptomatic when I saw these Dr's so more often than not, nobody believed us. I often got the look of "its all in your head". It wasn't that often that phrase was said aloud.
I tried to play baseball which I enjoyed, it often came with pain. I just associated going outside in summer to pain with anxiety.
20 minutes to a half hour was usually my limit. Burning, tingling, itching (but painful to scratch), sensitivity to hot and cold, I often never wanted to be touched which pained my parents.
“I became an adult that is anxious 24/7.”
I lived in long sleeves often suffering from heat exhaustion just to not deal with the burning, I always felt on fire when I would be out in the summer.
I became an adult that is anxious 24/7. High functioning anxiety. Every morning, what do I pack in my car to get me through the day. Where will I be? Will there be windows or patio umbrellas (they seem to amplify the UV and feels even worse than not being under one). How long am I driving etc. Every single action in the summer day has me on edge that someone without this disease wouldn't think twice about.
The moment I began the real drug, for the first time in my life, I can relax. I worry about NOTHING! It is such a freeing feeling that I can't even describe to a regular person.
4 months ago I went to the Dominican for 7 days and all I felt from the sun was warmth, it brought me to tears sitting in the sand, looking out at the ocean. I did not feel one bit of my porphyria out there and it was indescribable.
This drug in incredible and cannot be approved fast enough!
-Desirae
