Repetitive Stress Injuries

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Canes and doctors

I saw my eye doctor yesterday. All my tests went well: the cataracts haven’t gotten any larger nor have the holes in my peripheral vision. However, she is increasing me on Diamox to a total of 2000 a day to decrease the high pressure days. I even got to pick out a cute pair of glasses (with my wife’s help, due to my eyes being dilated) which will have rented lenses.

My wife is talking about the cane being optional eventually, but I’m unsure. It’s not just #IdiopathicIntracranialHypertension affecting it, but also #Meningitis alongside repetitive stress injuries. In essence, I think I should have been using a cane before now, and I think considering it optional in the near future is premature.

I have hid a lot of the effects of my right side being weakened and injured, even before the meningitis and IIH, because I didn’t want to look weak or people worry about me. The meningitis and IIH just underscored the underlying injuries all over the right side.

Besides, what could I do?
I didn’t have insurance from 18-23, and seeing a doctor even now can be challenging.

I love the cane, it’s great being able to walk and not being in pain. And it’s been hurting so long and so bad, I don’t see much of an alternative. I have been in some physical therapy, but it didn’t do anything except keep my knee and shoulder feel like they are coming unglued as often.

How in the world do I talk to my wife about this?

I don’t want to worry her; she is my everything.

I’d rather handle this myself.

#IdiopathicIntracranialHypertension #IIH #ChronicPain #Meningitis #ADHD #Autism #Bipolar1Disorder


EDS as a Classically trained musician

I am a classically trained percussionist, I can play over 30 percussion instruments and I have played for some of the best composers and conductors in the country. This all changed in 2010 my Junior year of college. My right shoulder wouldn’t stay in, it was no longer just subluxations. After over a decade of intense training and hours of playing drums I was now a 22 year old washed out with repetitive stress injuries including a shoulder that required surgery to repair. I had to stop playing. I had to say goodbye to dreams of traveling the world as a percussionist for a professional symphony just as my abilities were reaching their strongest. I dropped out of school and fell into a terrible depression. I felt worthless, my disease literally stripped my dreams away. EDS weakens the connective tissues in my body so much that continual repetitive motions (like playing drums) we’re creating tears in my arms and shoulders and carrying a drum was causing severe pain and subluxations. I wanted to die. Unable to do the thing I love for the rest of my life left me empty and scared. Then in 2013 I met my husband, he’s a band director. He reminded me of the age old phrase “those who can’t do; teach” I teach high school drumline. I push hard for healthy performance techniques and practice behaviors. I’m a stickler for posture and core engagement. I know every way a high school percussionist can get hurt while playing. I know first hand what years of playing without rest or proper care (spoonie or not!) can do to the human body. So I give them all the tools to be the greatest musicians they can. Even when I am at my worst. Some days I teach from a rolling chair so I can sit during our 4 hour rehearsals. Some days I am running around teaching marching moves and playing parts. The students are far more understanding and patient about my disease than I’ll ever be. Don’t be afraid to do what you love; in a capacity that is healthy for you. #EDS #Music

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