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06/28/2003 Archived Entry: "Erythropoietic protoporphyria and how I'm starting to realize I'm not as whiney as I thought I was:"

I'm feeling a lot happier I think.

Thanks to the help of meeting another EPP person on one of the porphyria mailing lists I'm on, she directed me to an EPP ML.

I suddenly don't feel like such a wimp anymore. Maybe it's the fact I know now it's not all in my head. Sure, getting the diagnosis proved to me mentally that it wasn't in my head, but I still emotionally felt like it was. Like there was something I could do. Suck it up and deal basically. Then after reading some of the other accounts from other people getting attacks from it and kind of nodding my head going "yup. I've been through that...been through that too" I sort of realized..."wow...it actually IS that painful. It's not something you can just suck up" I mean...it's like, What sort of excuse can you give that says an 11 year old child would stay awake sitting in ice cold water during the night and sitting the entire day away in front of an AC leaving only to go the bathroom and maybe...MAYBE grab a bite of something cold to eat, for 4 days straight without a wink of sleep just because that was the least painful option, and they should be able to just "suck it up." Kami, I remember wanting to scratch the skin off of my bones if it would rid the pain. I'm surprized I didn't...or maybe I did and it healed without the scaring. I can't even remember because I blocked the emotions of it so badly.

Some of the people on the list are talking about getting Handicap plates for the cars and Medical Alert bracelets and stuff. And I continued feeling like I was a wimp?! Like I should have stopped complaining about my damn disorder and run out in the sun like every other human being and deal with the pain just so I could be normal. I felt guilty for getting a VIP thing at Disneyland when I was younger and skipping the long lines because that's for people who really need it. Not for me. Because it's all in my head you know. It's all mental.

I don't feel like such a wimp anymore. It's not in my head scientifically anymore. It's started to really show emotionally too. I still have my doubts though, but then again nothing changes overnight completely. It makes me wonder if my who issues of selfworth spring from this. Just from being told that I was a strange child and that it was all just fussy fantasy. "It's all in your head dear. Just calm down." My whole sense of wrongness with how I fit in the world.....maybe not THAT deep. But it still makes me wonder how deep those sort of scars go.

I don't feel like such a wimp anymore =)

Though I certain feel sort of....amused? *laughs* I'm not sure. I almost feel it's a curse in a way because porphyria is a royal disease. It was created because of all the rich inbreding, hense why such a rare disease has been known for so long. So I'm cursed because my ancestors refused to marry anyone "lower" than them and I'm stuck as the product of royalty....a royal pain in the ass..or skin. =D

Ya. But I can pretty much assume most of the people reading this don't really care. Not really because you're not caring people, but because it's hard to understand. I still love you all though. I really do. I really really do.