CPRS is a Game of Wack-a-Mole
I want to introduce you to Diane Simonson, a first-time walker in this year’s walk.
I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig’s Disease, and everything else under the sun. As many of us have experienced – doctors told me I was ‘faking’ it, and it was ‘all in my head.’ (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together as a team to support and monitor me to this day.
I made the decision early on to not have any procedures done – no spinal stints, no Ketamine therapy -nope. Just some medication. When I told my doctors I was going to walk again, some looked sad and said “We don’t know a lot about this illness”, or told me not to get my hopes up too high. One doctor told me that my time would be better spent learning how to cope with this change in my life. (Not an HSS doctor!)
It began in one leg, but soon spread to the other leg, both arms, and left ribcage. I could not bend my head forward enough to brush my own teeth. There was one point where I decided to ask to have both legs amputated. (Thank goodness I didn’t!) It took me three months to get my legs to bend so I could get into a wheelchair – probably the second most happy day of my life…to be pushed through the park – out in the green for the first time in months…I still get teary-eyed thinking about that.
Two to three hours of therapy every day on my own, and several years of PT visits twice a week. I moved to a rollator – yelped every time the wheels hit a bump…but I was upright! I didn’t care. Then to a cane! Two flare-ups set me back, but RSD chose the wrong person to mess with. November 2012, I walked outside without a cane. The happiest day in my life! Since then, I have only had to use the cane about three times a year.
Of course, this illness completely changed my life. Divorce, had to leave my job, sell my home. Still putting it all back together.
Currently, I manage my illness. It is a game of wack-a-mole. A flare-up in my hip for about a year before I found out it was RSD and not an injury from a fall off my shower seat – nipped that in the bud. I had a flare-up in my larynx; if I lean my arms on my desk without my pillow my lover arms flare up, blurred vision when stressed; I figured out that my index finger was swelling and in pain because I hit the elevator button and light switch with my finger tip (use the knuckle!) A lot of time trying to figure out why the pain is where it is and get it gone. I manage balance problems, proprioception issues, stairs; inclines…these problems vary from day to day and catch me off guard.[Funny story: I went to see Nutcracker this past December and got a seat in the Mezzanine. The incline was so steep – with no hand-rail, I entertained the whole Mezzanine audience by sliding down the stairs to my seat on my butt – Terror-stricken the whole way! I found it amusing that here I was doing that when, years ago, I had danced more than my share of Nutcrackers!]
Yes, I can walk right now! I never believed in miracles, but I do now! I am so amazed and grateful (oops, and teary-eyed again) that I will actually WALK in the 2015 Achilles Walk for Hope & Possibility this year to support all my dear, dear friends who are also struggling with this illness every day. All of us can have a miracle.
I would love your support. Please sponsor me – OR BETTER YET: COME JOIN ME! How wonderful would that be if you were there! Join the Debbie’s Warriors group!
Many thanks for your support — and don’t forget to forward this to anyone who you think might want to donate too!
To support Diane, please make a donation to her page.