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So You Want to Dance- A New Way to Help CRPS

Published on February 2, 2016 under Guest Blogger for RSDSA
By Ryan Ferrell Do you sometimes struggle to get Enrique out of your head? Yo quiero estar contigo, vivir contigo Bailar contigo, tener contigo So does Lucrecia Martinez, a physical therapist from the Silicon Valley. She wrote about wrestling with her chronic pain after an injury in last summer’s Community Update (page six): Until then, my passion in life had been dancing. My husband and I met dancing. We loved to escape on date nights to dance salsa, cumbia, merengue, and any other Latin-infused music. At first, I denied that pain could rob me of my passion. I would grit and push myself through the pain. I feared that, if my husband and I could no longer dance, he would…
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Crazy Sock Walk Raises Awareness for CRPS/RSD and More

Published on January 26, 2016 under Events
By Samantha Barrett, Special Events Coordinator For the past few years, I have participated in Crazy Sock Day. I am a lover of crazy socks and have quite an inventory of them, so every day is Crazy Sock Day for me, but on January 24 it is embraced by the invisible illness community. I had heard it was for a young girl named Melanie who had several of the invisible illnesses that I did. As the years went by, I learned more about this young lady’s story. January 24 is her “painiversary.” To raise awareness and bring a little bit of sunshine to this girl’s life, Crazy Sock Day was started. It quickly took the CRPS Community by storm through…
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Crazy Sock Day for CRPS Awareness

Published on January 19, 2016 under Events
Interview by Sammie Barrett, RSDSA Special Events Coordinator. For the past six years, there has been a day in which people wore crazy socks to raise awareness for CRPS/RSD awareness. I heard about it in its second year and encouraged my friends and family to participate. We would post pictures of our crazy socks online to our personal Facebook pages and to a page dedicated to this Crazy Sock Day. Last year, the first Crazy Sock Walk happened in Melbourne, Florida. It is happening again this year. The masterminds behind this: the Dickens family. Melanie is teenager living with CRPS/RSD among other invisible illnesses. Her mother, Laurie, is one of her biggest advocates. I was able to interview them this…
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RSDSA Spotlight: Dear Body

Published on January 12, 2016 under Bully Free Zone
Written by Melissa Lovitz, Guest Blogger for RSDSA Dear Body, I’m sorry for wishing you were different and calling you flawed. Living with chronic pain for twelve years taught me to question a lot and dislike much about you. In the chronic pain world we’re encouraged to constantly ask ourselves, “are you hurt or does it just hurt?” We live in a world where “find a distraction” is our first line of defense because “find a reason” and “find a solution” aren’t always possible. The absence of an explanation from you about why it hurts makes me crave reason and logic that much more; that directly conflicts with my experience of pain for which there is little semblance of such…
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RSDSA Spotlight: When to Listen- A Day In The Life With CRPS

Published on January 5, 2016 under Guest Blogger for RSDSA
By Autumn Strand, Guest Blogger for RSDSA I, like many, had never heard of RSD/CRPS until it actually happened to me. I remember on the ride home googling it after the 3rd doctor I had been to said it is what I more than likely had. After many tests and even more treatments, I was diagnosed with this mysterious disease but I still wasn't sure what was happening to me. I have done a lot of research, and I am still learning new things every day. In my experience, most doctors do not know very much about RSD/CRPS so how can other people know? In the world of invisible illnesses it is almost impossible for people without them to know…
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Twelve Things People with CRPS Want You To Know About Them During the Holiday Season

Published on December 17, 2015 under Opinion
  By Samantha Barrett, Special Events Coordinator Tis the season to be jolly! Or at least, that’s what I’ve heard. I love the holiday season. There are beautiful lights and decorations everywhere, there are people singing cheery songs, there are fun, mindless movie marathons on TV, there is delicious food- all of my favorite things wrapped into one season. Maybe that’s why I am so exhausted this year! In my years with CRPS, I’ve noticed that things are a little different than what they used to be. But, I am finding a way to be a little less “bah-humbug” and a little more “holly jolly.” While some people may not understand why I’m Scrooge one moment and good ol’ Saint…
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Fighting Back: The War Against Chronic Pain Sufferers

Published on December 11, 2015 under Call to Action
By Suzanne Stewart, author of "Tears of Truth" blog Think back to the Gun laws.  Remember how some citizens were against taking guns away from the “people”? The reason being, that the “bad guys” will always have access to them and the “good guys” who are in need of protection; get killed in the meantime because their safety net, their weapons to fight against being robbed were taken away from them! Well, my friends, the same thing is happening now, this 2016;  to “real pain patients” fighting against being “robbed” of their “safety net, their weapons” to fight against the chronic intractable pain, and nerve pain that “WE” live with day in and day out. Yes, I am one of…
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I Feel Your Pain: The Power of Witness in Support Group

Published on December 4, 2015 under Guest Blogger for RSDSA
By Elisa Friedlander, from her blog. "People have a deeply innate desire to be seen. I'm not talking about Facebook selfie type visibility, I mean really be seen. To have people, or even that one person, be tuned-in to your joy, struggle or other experience. To simply be present without trying to fix you. When somebody bears witness to a piece of my story, we've established a connection and those shared moments become a part of me. I have received a valuable gift.  To be witness to the story of another is also powerful. Even though deep down we want people to see who we are, we might be conflicted about that. It can feel vulnerable, uncomfortable or even unsafe…
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How Camp Is Changing Lives For All Ages

Published on December 1, 2015 under Guest Blogger for RSDSA
By Candice Clifford. Volunteer from the Center for Courageous Kids Pediatric Pain Camp Session. CRPS Warrior. Experiences which leave an impression on your heart are the ones that stay with you forever… I ventured to Kentucky this past July to volunteer at the Center for Courageous Kids’ (CCK) inaugural Pediatric Pain Camp.  I took a solo trip, not knowing what to expect but ready to have fun with the campers.  To many, Kentucky seemed like a random place for this east coast girl to be traveling to.  However, as I reflect back on my experience at CCK, there was nothing random about this trip, rather I’d like to believe it was serendipitous. Working with children who live with chronic pain…
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An Update on the Walk to Conquer Pain

Published on November 10, 2015 under Events
  By Samantha Barrett: The Walk to Conquer Pain kicked off this past Saturday. It grew even more over the weekend. I love seeing how much this walk grows every day. I wanted to just clarify a few things for everyone. Since this is a new website and event, I am learning as we go as well. To sign up for the walk you can go to: https://walk-to-conquer-pain.everydayhero.com/us/get-started. This will create your fundraising page that you can share online through email or social media. All you have to do is copy the web address at the top of the page. It is similar to a FirstGiving page. If you would like a template of an email/post to send to your…
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