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Stories of Hope

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

Knock Out Pain Together- An Inspirational Story of Coming Together

Published on July 18, 2017 under Events
   Sarah Phillips-O’Steen is an ally to the CRPS community. Ever since she was 2 years old, she has been witnessing what CRPS/RSD can do to a loved one. Her father, Julian Phillips, has been living in pain since his daughter was toddling around. As Sarah will tell you, he’s always been good at hiding his pain, but she has never known him without it. In January 2015, Julian took a terrible fall that sent him into one of the worst CRPS/RSD flare ups that he had ever experienced. This guided him into full body CRPS. While Julian was spending time in hospitals, fighting the pain, Sarah witnessed some of the grim realities that come with CRPS. Medical staff didn’t…
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The CRPS Wedding Chronicles- Almost There!

Published on March 22, 2017 under Stories of Hope
By Samantha Barrett, Special Events Coordinator Getting closer to the wedding date, Samantha updates everyone on some of the tips she has learned through the wedding planning process with CRPS. What questions do you have for Samantha? She can answer them in the next edition! Hello friends! It’s been a while since I’ve update you on the wedding chronicles. We are just about 3 months out from the big day (I know, crazy, right)? But I’m getting extremely excited, although a tad overwhelmed. Recently, my health hasn’t been the best it could be. My CRPS has gone into occasional flares, but the EDS and POTS have been what is really affecting me. But the EDS contributes to CRPS pain for…
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Chronic Pain and Family Responsiveness

Published on March 7, 2017 under Guest Blogger for RSDSA
By Guest Blogger: Laura Lustig, PhD Originally Titled: "Chronic Pain And Family Responsiveness: Stories Of Courage In The Face Of Unimagined Change." There are many types of chronic pain experienced by people all over the world, many of which have been well recognized and have treatment regimens that are prescribed regularly by doctors and allied professionals. To categorize the pain of Reflex Sympathetic Dystrophy (alternately referred to as Complex Regional Pain Syndrome) as chronic pain is almost a disservice. To begin with, people suffering from this syndrome go through indescribable pain that can strike without warning and become unmanageable. Then, there is the agony of waiting for someone to diagnose it correctly because, unlike so many other types of chronic…
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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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