HOW AND WHEN DID YOU GET RSD?
I got RSD back in 2005, in either April or May (can't remember month). There was an elementary school across the street from my house that had basketball courts and I was shooting hoops with a friend, because that's what he wanted to do, and we were talking. All of a sudden, I tripped over my left foot. My mom first took me to the Pediatrician who suggested I see a Podiatrist because I don't walk right, but my mom decided to send me to a Sports Medicine doctor instead. He took an x-ray and didn't see anything, but said it's probably a stress fracture because they don't always show in regular x-rays, and he put me in a walking boot for the rest of the summer. Then my pain started to spread to the rest of my body, especially my hands. The doctor suspected I had JRA, so he ordered some blood work and, when I had a positive ANA, he sent me to Children's Hospital of Philadelphia Rheumatology and they diagnosed me with RSD in September.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
I used to play violin all the time. Now I can rarely play, and only for short periods of time. In addition, I was at a college in Long Island that I loved but, because I dormed there, I had to go full time and take at least 12 credits, and it was three hours from my house. Being so far away and having to take a full course load took a toll on my body. I loved my classes and my friends, but now I'm transferring to a school near my house. In addition, I had an internship last summer that I went to on the first day but, after that, I had too much pain to show up the rest of the summer.
DO YOU HAVE A GOOD SUPPORT SYSTEM?
I find lots of support in my parents and grandparents. In addition, I am in several support groups on Facebook, and interact with many others with RSD on Twitter and Tumblr.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I used to be very religious. I used to be a part of the Catholic Club on campus. I could no longer go to their masses on Sunday nights, because my pain would flare at night (it always gets worse at night), and some members of this club got annoyed at me for this and said that if I only "practiced my daily faith" my pain would improve. This really turned me away from my religion. I had always been taught before that God wants us to be extra compassionate towards the sick, and some of the members did treat me with compassion, but many did not. I pray, but not as much as I used to.
HOW HAVE YOU RE-INVENTED YOURSELF?
I now have a new career goal to work with computers. It's something that I can do without too much pain, and something I probably wouldn't have considered before this pain.
HAS ANYTHING GOOD COME FROM THIS TRIAL?
I have more compassion and sympathy towards others. I like to fundraise and create awareness for RSD.
WHAT THINGS DO YOU MISS THE MOST?
I miss playing my violin a lot. I also miss being a dependable person. I used to almost never cancel any plans or promises I made with friends. Now I frequently do, because of flares.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
That there are good days and bad days to RSD. Just because one day I can do something and the next I can't, doesn't mean I’m a faker. Also, if I look good one day by putting on makeup, it's not because I feel good. It’s because I want to look decent and raise my self esteem.
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