But you don't look sick

When nothing about you is "normal"

Saturday, 24 September 2011

My story

Everyone who has some sort of illness or syndrome has a story. This is mine.

When I was a kid I had all sorts of neat "tricks" I could do. I could put my feet behind my head, do the splits, fit in really small places, pop out my pinkie, touch my thumb to my wrist, pull my skin out a pretty good distance, ect. The most impressive trick I had was to lie on my stomach and bring my legs up and over so my feet were beside my head.

Of course there were lots of other things that weren't so much fun. For instance, my grandma would always get mad at me because when I walked my feet just kinda flopped around. Not in a straight line. She would get me to walk for her to show my mom or someone and since I was paying attention to my walking it was fine. One day we had been walking threw fresh snow, when she made me turn around and look at my foot steps. I couldn't believe that I actually walked like that.

I also happen to be very good at sports. I would play anything! This of course meant that I got injured a lot. I'd pop out my shoulder pitching and since it went right back in I didn't say anything. I played hockey and skated on my ankles. (I was still one of the fastest ones on the ice) I was always getting hurt and bruised and whatnot. Eventually my mom would get frustrated with me when I'd come to her, I didn't understand that she wasn't mad at me but just couldn't understand how one kid could get hurt so much.

The beginning of my journey to a diagnoses happened when I was 14. We were in gym class playing co-Ed volley ball. My teacher wanted to demonstrate how to spike, so I volunteered.
I dislocated my shoulder. I was later told that it had been a perfect deep spike into the back corner.

Went to the ER in a sling was given some Tylenol and sent on my way. Except it didn't get better. I had a small tear in my rotor cuff. I was told that I didn't need surgery, since I was young and would heal quickly. Well turns out I don't heal quickly.
I also was throwing out my back all the time and dealing with a lot of pain. Including shooting pains, ridiculous headaches, easy scarring, tight tight muscles, really sensitive skin, insomnia, anxiety, depression. I spent 3 1/2 years going from doctor to doctor, hospitals and clinics, and having so many tests done I was a pro at MRI's. And yet we only found out that I have scoliosis.

I hated going to the doctors, they never had anything positive to say. I was told that I shouldn't play sports. That broke my heart. It was what i was good it. It was how I dealt with my problems. It wasn't uncommon for me to cry before or after an appointment.

One day my mother and I were at sick kids hospital. The doctor had left for something, and I started pulling at my skin making faces. He happened to walk in while this was going. He left to go get a few more doctors. I layed on the table while they pulled on my skin and then on each others. He thought I might have EDS. He gave me a referral to the genetics clinic in the hospital.

I got diagnosed on a fluke.

When I saw the genetics team they asked me to do my tricks, and gave me a positive diagnoses. Told me to call when I wanted to have children, handed me a yellow 1 page brochure and send me on my way.

Moral of my story : laughter is a great way to cope. And silliness is very important at every age.

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