In Tune

Published on April 15, 2020 under RSDS General Info
Written by Sue Racaniello for the RSDSA blog.   My body used to walk through life unaware of it's surroundings It was a vehicle to get me to point B It's supposed to be that way, or is it? Should I feel every nuance around me? Every whisper of the wind on my hand, every inch of earth beneath my foot?   I'm still trying to sort this out And figure out how to go about I have to strike a balance To stay in tune with people around me While I control the pain inside thee   Each step with my foot Or grasp of my hand Transports me to a no mans land I hear people talking, And…
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Continue Pushing, Continue Fighting

Published on April 8, 2020 under RSDS General Info
Written by Destinee Macklin for the RSDSA blog. How and when did you develop CRPS/RSD? On May 11, 2018, I was the passenger in a vehicle we were using to conduct patrol. During a routine traffic stop, a suspect bailed out of the passenger side of vehicle armed with a handgun. As I excited my vehicle to pursue the suspect, I took two footsteps and saw a headlight. I put out my left arm in fear at which time I was struck by a truck. I was able to gain my balance, continue to pursue the suspect, place him into custody, and retrieve the handgun. I was sent to shock trauma and six months later, October 2018, I was diagnosed with Complex…
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In A Flash

Published on April 1, 2020 under RSDS General Info
Written by Sue Racaniello for the RSDSA blog.   In a flash A life can change In a flash, the flame ignited In a flash, my world divided   Minutes to hours, hours to days My mind is unable to leave this maze   Days to weeks, weeks to months Time is racing yet I feel so stuck There are moments I can't even speak And that's when everything feels so bleak   Weeks to months, months to a year I go outside but still with great fear The flames have subsided, but the pain is still here   I've made great progress nevertheless And now it's time to reassess I promise to my family and to myself That I…
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The Highs and Lows of CRPS

Published on March 25, 2020 under RSDS General Info
Written by Sandy Geddes for the RSDSA blog. I turned 50 in January 2019. Fifty was supposed to be my year. I even did the SNL Sally O’Malley skit as a joke on my birthday. You know the one: “I like to kick & stretch & kick! I’m 50! Fifty years old!” I set big goals for myself that year. The biggest one was to run the slalom waterski course which is very challenging. I trained and practiced so hard even though I had a broken toe! I just taped it up and got to it. My pain threshold was very high. My husband and I would drive eight hours to Orlando five times in one year so that I…
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One Hour at a Time, One Day at a Time

Published on March 11, 2020 under RSDS General Info
Written by Kathleen Derby for the RSDSA blog. How and when did you develop CRPS/RSD?  I was in a bad car accident in 1977, the year I graduated from high school. The following year, I had surgery on both of my feet. It was a bunionectomy on each foot. I was 19 and my doctor said I had the feet of a 40-year-old. I was admitted to the hospital and released in a few days. That was the beginning of my nightmare. It took me a very long time to heal from that surgery. It was a good year before I could even bend my big toes. I had tremendous pain by the end of each day after work. No…
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Be Your Own Advocate

Published on March 4, 2020 under RSDS General Info
Written by April Ball for the RSDSA blog.  How and when did you develop CRPS/RSD? I had an epidural injection for a herniated disc that I had a reaction to. It was my third injection and it hurt pretty bad when the pain doctor did it. It was unlike the others I had. I cried when the doctor stuck me. I could feel him pushing on my lower back. 24 hours after the injection I could not move my head from side to side. I could not bend slightly and I had to have help walking. I could not lift my right leg or put my sock on my foot. It took almost a year for me to get diagnosed.…
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RSDSA’s Rare Disease Week – 2020

Published on February 24, 2020 under RSDS General Info
Rare Disease Day is held annually on the last day of February to raise awareness of rare diseases. This year, Rare Disease Day is Saturday, February 29th, 2020, but RSDSA is working to spread awareness for CRPS all week long. Check out our daily virtual activities and join us if you can! Monday: Make your voice heard: Share your CRPS journey photos on social media by using the hashtag #RSDSArare. We want to make sure that those without CRPS understand what CRPS is and what it looks like. Tuesday: Write and/or visit your local and state representatives to educate them about CRPS. Check out this sample letter that you can share. Wednesday: Join the #SpoonieChat on Twitter at 8p ET to…
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CRPS Warriors Are Not Pretending

Published on February 19, 2020 under RSDS General Info
Written by Judi Soderberg for the RSDSA blog. How and when did you develop CRPS/RSD? For 25 years I had a shoulder issue that doctors diagnosed as Thoracic Outlet Syndrome. I tried very hard to work with that and just let it go, but the pain increased over the years. So when a vascular surgeon told me it could be corrected with surgery, I was all for it. Of course he did not warn me about the consequences of such surgery, namely CRPS. He removed the first rib, the anterior and middle scalene muscles, and low and behold, found my brachial plexus bundle was twisted. Normally it has nerves on one side, artery on the other, vein on top. Mine…
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CRPS Guided Me to My Calling

Published on February 12, 2020 under RSDS General Info
Written by Marisol Pérez for the RSDSA blog. Hi there. This is a part of my CRPS story. I developed CRPS following a right ankle surgery in 2012. I was 25 at the time. I enjoyed the outdoors, jogging, and walking my dog (now I have three). Prior to the surgery, I was told it would be minimally invasive and that life would go back to “normal.” That surgery changed my life. I knew something was wrong right after the surgery. The pain was unbearable and every time I would go back to the doctor for a follow-up, I was brushed off and told that this was all part of the healing process. I knew in my gut that something…
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Awareness Will One Day Bring Us a Cure

Published on February 5, 2020 under RSDS General Info
Written by Shannon Beckman for the RSDSA blog. In 2009, I was at a concert to see my favorite band. I was downstairs and I heard the music start so I ran up the stairs in my flip flops. I stumbled and ended up falling backwards, landing on the step behind me, and hyperextending my big toe. While I was in a lot of pain in the days that followed, I heard from everyone that, "There is nothing you can do for a broken toe" and hoped it would heal on its own. It began to get worse and eventually I ended up in a walking boot, with instructions to ice it frequently for six weeks. As weeks went by,…
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