Tumor and The Hoop.


Last night I went to jam after a maybe 2 mo hiatus. Due to my rehearsal schedule, I have not had a chance to attend any of the jams which are held regularly by our local flow group every Thursday each week.

I gotta say, I can barely move today. I am so incredibly sore and stiff. Last night it hit me just how out of “hoop” shape I am. It’s kind of depressing me.

I have a bone condition called Osteochondromatosis, or MHE which stands for Multiple Hereditary Extosis. What this means is that I get boney growths, or spurs, around the joints of long bones. So basically I have tumors. They’re not cancerous, and this is something that I have since I was 2. It’s a genetic condition, however, I am the only one in my family to have this, making me a spontaneous mutation.

I’ve had so many surgeries since the age of 12 to remove large tumors that started to grow too large (largest one I had removed was about the size of my fist) or if they started to impede movement/press on nerves.

I’m not getting any younger, and I have no idea how this disorder will affect me as I grow older. When 1st diagnosed I was told I would be in a wheel chair by the time I was 18. My ankles are a big problem for me as I have had the most surgeries on them. There are days where I hobble around, and at night I get horrible spasms that keep me awake.

There is no cure for this. Just the surgeries, and I am tired of going under the knife all the time. OTC pain killers are a joke, and I refuse to take hard narcotics for pain management.

I know that part of my stiffness and soreness today is from having these tumors and my joints being all out of whack, and me running around and exerting myself last night.

It really wasn’t like I was going all out either.

This depresses me. Because I don’t like anything to stand in the way of what it is I want to do. And I will be damned if I let this condition dictate to me what I can and can not do. Regardless of the activity. But it does at times. More so than I care to admit.

Which leads to last night. There was so much talent in the room last night. It was mind blowing. And I felt like there was no way I could ever be that good, because of certain limitations that have been placed on my body. And that makes me sad.
I’ve only got maybe 4 years of hooping under my belt, but last night I felt as if all the moves that I know were repetitive and that lead to me becoming bored.

I know I should pick up the hoop more and make more of an effort to learn new things and just let go and get into the “flow”, but when you’re body can only do what it can do… I feel gawky and awkward.

I dunno. I’m overly hard on myself. I should be grateful that my condition is not as bad as others who have it.

I so need a hoop-volution. and a soak in a hot tub. Goddamn my joints be achey!


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