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Pain and Perseverance

Posted on September 11 2012

I have a disorder called RSD, or Reflexive Sympathetic Dystrophy. It’s an incredibly painful disease that, over time, causes skin discoloration, muscular atrophy and, with time, robs people of their mobility in the effected area. This lovely disease came from a particularly nasty case of swine flu, but most of the people diagnosed were involved in some sort of traumatic injury. It took me 2 long years to finally receive a diagnosis after literally thousands of dollars in tests. Many times along the way I was told “It’s all in your head.” At 25 years old, I had excruciating pain in my legs. It was so bad that if my pets brushed against me, or my husband accidentally touched my leg at night, I’d scream with pain. A few months later, I had to walk with a cane. A few months after that, the doctors were concerned I’d have to be in a wheelchair because my muscles had atrophied so much that my knee caps couldn’t even stay in place. They put me on a number of powerful medications, and with frequent nerve blocks (and a large brace to keep my kneecaps in) I’ve been able to gain my mobility again – a feat my first set of doctors said was unlikely. While it’s likely that I’ll never be able to run, I know I’m going to do everything in my power to be as active as I can before this disease permanently robs me of my independence. Who knows, I might even enter a marathon at some point! When I first received the diagnosis, I was scared. I didn’t know anyone who had it, and it was incredibly isolating. Luckily, I’ve found such a fantastic network of people who are dealing with the same thing. I’m 28 years old now, and I’m looking forward to a bright future with the support of my amazing family and friends. I love the message of your bracelets – Be Brave. It speaks to so many who have battled disease on so many levels. I know my family and I are eager to wear the Orange Bravelet for RSD to show our support to others who are living with this incredibly painful disease. Thank you!

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