Ehlers-Danlos Syndrome

On Wednesday, October 14, 2009 at approximately 10 a.m. I was OFFICIALLY diagnosed with Ehlers-Danlos Syndrome.

I am one of the lucky ones. I have hypermobility EDS (type III). This type is the most common and most mild form. I don’t have to live in fear, like my friends with vascular EDS, that each day could be my last.

Lucky or not, I have so many fears and questions. Like, why did it take 26 years to get diagnosed with a genetic disease I was born with? That’s just a silly question because I know the answer.

Or, will I still be able to walk without crutches or braces by the time I am 40? How painful will be it be as my joints continue to deteriorate? How helpless will I be? Is it selfish to still want children when I know I can pass this disease on to them? What will my husband do with a wife who can no longer help him move furniture? What will my co-workers say when my young, fit, “don’t look sick” ass can’t make it up the stairs?

Ugh. I’m doing it again. I’m feeling sorry for myself. And there is absolutely no time for that. I need to focus on what lies ahead. I need to focus on the important questions like, what does EDS have to do with my Lupus-like symptoms?

Why is my hair still falling out? Why does my scalp have sores? What’s going on with this patch of skin on my arm? Why am I nauseous 90% of the time? Why does it feel like someone snuck into my room and beat me with a baseball bat in the middle of the night? …As I try to stretch my body I can feel the impressions left by this fictitious bat.

And… are the precancerous cells they found in my mole significant? If there’s precancerous cells in my 26-year-old sun-starved skin, is it likely that there’s cancer some where else in my body? Is that an out-there or realistic question?

I’m still looking for answers, but I am certain they will come.

And why oh why are the Eagles losing to the fucking Raiders right now?