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Stories of Hope

Stories about people in the community that are inspirational or that are fighting back against RSD/CRPS

Judi Riley’s Art of Storytelling with RSD- You Can Do It!

Published on November 8, 2016 under Stories of Hope
Interview Conducted by Samantha Barrett Judi Riley is one of our fabulous Facebook community members. When we got word of her books with the incredible images that accompanied them, we knew we had to interview her. Judi, who has had CRPS since May of 2009, is an author, illustrator, graphic designer, artist, and mom who is conquering life with RSD or CRPS. After an introductions, Judi and I exchanged emails for this interview. Say "Aloha" to Judi, everyone! Samantha Barrett: You write and illustrate children's books, which is amazing! What inspired you to do that? Judi Riley: I've always been a storyteller and for as long as I can remember, I have doodled pictures to go with my stories. My…
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Jodi’s Story of Hope- DRG Stimulator and CRPS

Published on August 30, 2016 under Stories of Hope
Read this story of hope about Jodi, who lives with CRPS, from Ainsworth Institute of Pain Management. "Jodi, like most women, does it all. She is a mom, Nonna, baker, kickboxing instructor, softball player, wife, sister, you name it! Jodi led a very active, very busy and very happy life. On April 17th, 2014 while on vacation, Jodi was involved in an automobile accident that would leave her with a broken ankle. Jodi’s doctor noticed her ankle wasn’t healing properly and there was a lot of sensitivity in the leg near and around the broken ankle that was not normal. Her doctor had a hunch it was Complex Regional Pain Syndrome, or CRPS…a short time later the became progressively worse and the diagnosis…
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Matthew’s Story- Hope and Perspective

Published on August 9, 2016 under Guest Blogger for RSDSA
By Guest Blogger, Matthew When a person is diagnosed with CRPS, often times it can be a confusing, complex time. Read what Matthew has gained from his diagnosis and what he hopes for your future. My name is Matthew. I'm a 19-year-old male from Melbourne, Australia.  I was just recently diagnosed with stage 3 Complex Regional Pain Syndrome, but to most people's surprise, it was an absolute relief. My injury started 5 years ago as a 14-year-old kid playing basketball. I clashed knees with an opposing player, which I had done hundreds of times before- everyone in sport has. All the usual symptoms of that type of injury came on and lasted weeks: swelling, bruising, dull ache, and redness. 4…
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We’re Partnering With The Mighty!

Published on July 12, 2016 under Bully Free Zone
CRPS/RSD, RSDSA, and The Mighty (Oh My). We are so excited to announce that we have a new found partnership with The Mighty. This partnership will bring RSDSA's resources in front of The Mighty's wide-reaching readership. We will now have a growing home page on The Mighty and will appear on many stories on the site! How exciting is that? The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. More than half of Americans are facing serious health conditions or medical issues. They want more information. They want to be inspired. The Mighty publishes real stories about real people facing real challenge (like CRPS). Much like our own…
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CRPS Wedding Chronicles: Photographers

Published on July 5, 2016 under Stories of Hope
By Sammie Barrett, Special Events Coordinator I’m back! We’re officially less than a year away from my CRPS wedding. I’m taking you all on this journey with me. Believe it or not, I have shy tendencies. While I used to be able to perform at Celtics games, competitions, and recitals, that was with a group. When the attention is on me, I get quite nervous. Plus, over the past few years, I’ve become more self-conscious. Because of my inability to constantly be active, I’ve gained weight. My teeth have shifted despite having braces and a retainer for over 4 years (thank you, Ehlers-Danlos Syndrome). So, getting my pictures taken isn’t something that puts me at ease. My fiancé also gets…
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Team Caroline: A CRPS Story of Hope & Of Giving Back

Published on June 14, 2016 under Events
By Caroline Bert, Guest Blogger for RSDSA Caroline is a CRPS/RSD warrior that has been fighting for about 9 years. Now, Caroline is doing what she can to defy CRPS "limits" and to make a difference in the CRPS/RSD community through fundraisers. My name is Caroline Bert and I am 21 years old. In 2007 I broke my left wrist, when the doctor took my cast off my arm was crooked. After 11 months of many doctors ruling things out, my diagnosis was Reflex Sympathetic Dystrophy. Dr. Neil Kirschen treated me by a series of 3 stellate ganglion nerve blocks , and then on the first treatment of the second series I woke up with full relief. I went into…
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A Journey with CRPS/RSD Through the Gift of Music

Published on June 7, 2016 under Guest Blogger for RSDSA
  By Guest Blogger Shannon L. Everyone has that one thing that gets them through their CRPS/RSD battle. For Shannon, it is music. Read her story below. “WOW” is all I can say as I sit back and reflect on the past 26.5 years in dealing with RSD (yes, I know the correct term is CRPS but I still call it RSD).  In the midst of all the changes in my life as a result of RSD, the one constant in my life has been my music and how it has helped me deal with the pain. I have been wondering how to even start this blog, as so much has happened over 26.5 years - all the doctor appointments,…
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CRPS Wedding Chronicles: The Dress

Published on May 24, 2016 under Stories of Hope
By Samantha Barrett, Special Events Coordinator Wedding Dress Shopping with CRPS It’s been a bit since I wrote about wedding planning with CRPS. But let me tell you, a lot has been going on behind the scenes. You think that starting to plan almost two years in advance would be enough, but obstacles do come up. If you want to read about the proposal, click here. If you want to read about how I picked my venue, click here. Before we delve into wedding dress shopping, I wanted to say something. Just because you have CRPS or your significant other has CRPS doesn’t mean you can’t get married and live out your fairy tale. CRPS is a challenge, I would…
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The True Definition of a CRPS “Warrior”

Published on May 17, 2016 under Guest Blogger for RSDSA
  By Anna Evenosky, Frequent Contributor What is the true definition of a CRPS Warrior? We refer to ourselves all the time as “CRPS Warriors.” Although, what does it truly mean to be a warrior? Warrior is defined as, a brave or experienced soldier or fighter. So yes, we do fit under this definition considering every day we have no choice but to fight. We fight to keep our function and fight to keep our spirits bright and alive. Recently, I have had endless things go wrong for me. On top of Complex Regional Pain Syndrome (CRPS), I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), my depression came on full force, and my anxiety on how I will go…
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My Journey Back to Health: Barbara Wall and RSD

Published on May 3, 2016 under Guest Blogger for RSDSA
    By Guest Blogger Barbara Wall, Power Over Pain of Arkansas (Note: This is a success story from someone with RSD/CRPS that saw  Dr. Katinka van der Merwe. To read our article on Dr. Katinka van der Merwe's approach, click here). I was living life and enjoying all things around me. I did not feel that I took much of anything for granted. In 2005, I suffered a severe injury to my cervical spine (broken neck) as well as other injuries. As if dealing with a broken neck was not enough I received the diagnosis of Reflex Sympathetic Dystrophy (RSD), today known as Complex Regional Pain Syndrome (CRPS). I had the opportunity to practice as a registered nurse for twenty…
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