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reflex Sympathetic Dystrophy

How RSD Potentially Stole My Dreams- Cope With RSD/CRPS

Published on February 21, 2017 under Guest Blogger for RSDSA
By Guest Blogger Tatiana Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope. When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands…
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Painting CRPS: A Nurse’s Reflection of the Bible and Its Correlation to CRPS

Published on February 14, 2017 under RSDS General Info
Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS). This blog was originally posted on this website. Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "My rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." Thank you for the opportunity to share my artwork.…
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When Someone Offers You a Cure for CRPS

Published on February 7, 2017 under Opinion
All people that have been diagnosed with CRPS/RSD want in this lifetime is a cure. That’s why so many of us focus on awareness, awareness events, fundraising, and even on keeping up with the latest research. There is nothing more we want than to be the “old” us- the ones that can hop, skip, and play with our dogs, children, grandchildren, nieces/nephews, and so on, without being in excruciating pain and facing all of the consequences that come with it (if we can even get our bodies to move in those ways).  Please note everything in this article is my own opinion. Another common thing is that all of us have been told that someone has a cure. Most of…
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Music & Me- My Way of Coping with CRPS Pain

Published on January 31, 2017 under Opinion
By Samantha Barrett, Special Events Coordinator We all have our ways of coping with CRPS pain. I've been using music to get me through everything in my life, especially CRPS. It's time for me to share with you. For as long as I can remember, I’ve been singing along to music, making up my own songs, and dancing (even in a wheelchair) to anything and everything that comes on the radio. For a vast majority of my life, I was a dancer, a dance teacher, and a dance team coach. Everyone in my family played an instrument or could sing (not me though, I can’t get my voice to cooperate). I’ve always been on more of the A&R/music business side.…
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The Importance of People- Friends with CRPS

Published on January 24, 2017 under Call to Action
By Samantha Barrett, Special Events Coordinator I started my CRPS journey when I was a teenager. Of course, then, it was known as RSD, but a lot has changed over the years. I remember being diagnosed with “Reflex Sympathetic Dystrophy,” which instantly made me think that the doctor thought I was faking to get people’s sympathy. But, I soon found out it was so much more. Doctors didn’t give me much hope. They actually told me I would never walk again. But, I’ve always been a determined little monster. I did everything in my power to battle the beast that is CRPS/RSD. Physical therapy, acupuncture, medications, desensitization, and anything that was in experimental phases that I possibly could. But, there…
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The Club No One Wants- The CRPS Club

Published on January 18, 2017 under Guest Blogger for RSDSA
By Guest Blogger Jamynne Bowles Jamynne details her life, from being a young shy girl, to becoming a paramedic that suddenly joined a club she never asked to be in- The CRPS Club. What has life taught Jamynne? What is to come for The CRPS Club? Growing up in Northern Virginia, I remember being the shy girl who always wanted to fit in.  Overweight and pudgy, I was bullied a fair amount during elementary school.  You could say I was that proverbial “fat girl” that no one wanted to play with.  Unless, of course, it was kickball.  I had a strong leg, so generally I was one of the first few picked.  But if we played Red Rover, tag, or…
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New Year, New RSDSA Goals – Helping the CRPS Community

Published on January 3, 2017 under Call to Action
 By Samantha Barrett, Special Events Coordinator Welcome, 2017! So many of us were ready for a new year. With the new year comes expectations of resolutions, bettering oneself, and change overall. Not only is RSDSA no different than everyone else, but we also want to help people reach their goals/resolutions and then some! As you may have seen in our emails, we have a set of initiatives for 2017 here at RSDSA. They include: Co-sponsoring Camp for Courageous Kids- a camp for youngsters in pain for our third year Continuing to transform lives with our "Treating the Whole Person Conferences," the next one is scheduled for Nashville in April 2017, as well as utilizing our live-stream Implementing our first statewide…
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Fear of Distance- RSD / CRPS and The Journey Away from Home

Published on December 6, 2016 under Guest Blogger for RSDSA
By Guest Blogger Rachel Ehrenberg Rachel is a member of the RSD / CRPS community that had the opportunity to be a part of DCP, or the Disney College Program. She details what it is like to be so far away from home, for the first time, with CRPS. 997.2 miles. 997.2 minutes. 16 hours. These are just numbers that form a distance to most people. But when you are living with a chronic illness, 997.2 miles is a long way from home and your comfort zone. That’s exactly what it was for me. In January, I packed up my things and moved from South Jersey to Orlando. I was beginning a journey of a lifetime and starting the Disney…
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Don’t Judge a Book By Its Cover- What CRPS Taught Me

Published on October 18, 2016 under Guest Blogger for RSDSA
By Guest Blogger Shannon Leidig Greetings everyone!  Happy Autumn! I so cannot believe we are almost to the end of October, which means the cold and snow of winter is just around the corner. I for one so am not NOT ready for that.  I truly hope everyone is doing well.  I have been meaning to write another blog for quite a while; however, this thing called LIFE just happened to get in the way – as this was not the blog I had planned to write.  That being said – there has been a situation that has happened that has totally rocked my world and that [is why] I feel I need to write this one titled: “Don’t Judge…
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RSDSA’s Longest Day of Golf- Meet Zach

Published on September 26, 2016 under Events
Interview Conducted by Samantha Barrett Monday, September 26 is RSDSA's very first Longest Day of Golf. We wanted to find someone that would represent us in a great way. That's when Zach Baron came along. As this is being posted, Zach is trying to complete as many holes of golf as possible for RSDSA. People have been making pledges per hole and one-time donations to make this event a success. The more holes of golf Zach completes, the more fundraising is done for RSDSA. We interviewed Zach before he took to the green. Samantha Barrett: Hi Zach! Thank you for participating on behalf of RSDSA for the Longest Day of Golf. Can you tell us a little bit about yourself?…
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