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An Introduction to Carolyn’s Cards

Published on January 25, 2019 under RSDS General Info
By Carolyn McNoldy My name is Carolyn and I am the brains behind Carolyn’s Cards.  I have been battling CRPS for eight years.  It started in my left elbow after a surgery.  It took me about two years to be directed to a doctor who actually knew about CRPS and was able to make the diagnosis.  Since the original elbow surgery I have had fourteen additional surgeries to help control the pain.  I even had a peripheral nerve stimulator implanted in my arm.  Then just when I was getting the hang of  living with my CRPS limitations, it spread to my left shoulder and left side of my neck almost three years ago. I spent six of these eight years…
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My Story

Published on January 16, 2019 under RSDS General Info
By Roslyn Hamilton - info@healthybuildings.org Are you engaged in pursuing your dreams? Are you committed to your passion in life? I wasn’t - with 50 years on and off with insufficient priority given to my violin. To my horror I have Complex Regional Pain Syndrome (CRPS). Formerly Reflex Sympathetic Dystrophy - RSDS in my left hand which resulted in bent knuckles, limited flexibility and more. While it has improved a lot since splint was taken off, it has a way to go. My story is not medical advice, just in my humble opinion, an opportunity to share alternative choices after the medication gabapentin made it worse. An inspirational friend said dire things can happen if you are not fulfilling your…
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From Therapist to Client: How My Healing Experiences with CRPS Can Help Others

Published on January 2, 2019 under RSDS General Info
 By:  Julie Robbins, OTR/L I am a passionate, pediatric occupational therapist.  I am also an adoring mother of a 7 year old, a loving wife, a minimalist, a book clubber, a political activist, an animated Zumba-er, a Korean language student, a loyal friend and family member, a volunteer, and therefore, a multitasker.  A few months ago, I became a patient too. I was multi-tasking (read: rushing) when I stubbed my middle three toes of my right foot, hard.  After an x-ray and MRI and several appointments with just as many healthcare professionals, it turns out I likely fractured my middle toe in two places and developed a rare, nervous system response to this injury of an appendage: chronic regional pain syndrome…
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My Disability Is Everybody’s Problem

Published on December 19, 2018 under RSDS General Info
By Elisa Friedlander, Repost of her Blog on 12/08/18 Talk about the 1990 Americans with Disabilities Act (ADA) has surfaced since the recent death of President Bush who, despite opposition from his staff, signed the ADA into legislation. The civil rights law, prohibiting discrimination against persons with disabilities, moved forward because of the disability advocates who marched, sat, spoke and fought for it in the first place. Still, nearly three decades later, people living with disabilities know the struggle still exists. I recently caught up via email with a local friend I hadn't seen in weeks. "I assume you're doing well, since you're going to Arizona this weekend," she wrote. A reasonable assumption, but not quite on point. Things have been hard--really hard--since…
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Holiday Blues

Published on December 12, 2018 under RSDS General Info
By Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group. © Jennifer Picciotto 11-30-18. First published in National Pain Report. The holidays are a particularly stressful time for people who live with chronic pain. We are reminded more frequently of things we can no longer freely enjoy; things like going to parties, hosting a gathering, or enjoying the bustle of a crowd at a shopping mall. Managing chronic pain means living with restrictions, and the excesses – from food to fun – that accompany the holidays can feel overwhelming.…
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Shannon’s Story

Published on December 5, 2018 under RSDS General Info
By Traci Patterson - Founder and Executive Director, Advanced Pathways Shannon suffered a knee injury at work that lead to her diagnosis of CRPS.  Much like the majority of CRPS patients she went undiagnosed for three years.  Heading into her fourth year of excruciating pain, temperature changes, swelling and frustration – she finally received the life changing diagnosis. Then the next hurdle was finding an effective treatment options that provided long-term results.  Seven years went by while being treated at some of the best medical facilities and universities on the west coast.  This included seeing the top specialists at Stanford University and UCLA trying to find the elusive treatment that would help her regain life again.  Unfortunately, traditional treatments were…
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RSDSA is asking the CRPS community to support House Resolution 1154 affirming the Importance of the Orphan Drug Act

Published on November 28, 2018 under RSDS General Info
By James W. Broatch, MSW, RSDSA Executive Vice President, Director and Marin Blake Cartelli, RSDSA Advocacy Committee In 1983, The National Organization of Rare Disorders (NORD), working with Representative Henry Waxman was instrumental in advocating for the passage of the Orphan Drug Act (ODA) which brought new hope to the rare disease community by encouraging the manufacture and distribution of new therapies. 35 years ago, when it was introduced, there were only 34 therapies available to treat rare diseases. Today, there are over 700. Under the ODA drugs, vaccines, and diagnostic agents would qualify for orphan status if they were intended to treat a disease affecting less than 200,000 American citizens. In order to encourage the development of drugs for…
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Thankful

Published on November 21, 2018 under RSDS General Info
By Shannon Schildt-Leidig Oh my gosh I cannot believe we are coming up to the Holiday season and the end of another year!  This is a time in which I stop and reflect on all that has happened in the past year and to say THANKS to those special people in my life who have stood by me thru thick and thin ~ and believe me there have been some very thin and dark times this year . . . . . This blog is dedicated to two very special people in my life, my parents John and Mary Ann Schildt who have been my support since I was diagnosed with RSD/CRPS 28 years ago.  I honestly do not know…
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25 Years Later

Published on November 14, 2018 under RSDS General Info
By Keven Mosley-Koehler To My Friends and fellow-survivors, Last week, I was playing a tennis match and my feet somehow got tangled up as I was running down a well-placed ball and the next thing I knew as I lunged for it I went down hard onto my right hip and leg. The first thought I had was whether or not she had been able to successfully return my shot! My second thought was, “ouch, but I need to get up and finish my match!” (I take tennis very seriously). It wasn’t until after the match concluded and I was on my way home that my chest squeezed up as that now-so-familiar question broke into my awareness: “Will this trigger…
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CRPS/RSD & Surgery

Published on November 7, 2018 under RSDS General Info
By Debbie ONeal The first thing that pops into my mind when I hear “surgery is needed “is pain.  Then it jumps to will it spread?  Then I worry about why I need surgery to begin with. I know a lot of us have horror stories about going to the hospital and having surgery.  My way of thinking in my 14 1/2-year journey with RSD/CRPS is you have to respect it.  If you’re hurt you give yourself time to heal.  You baby your injury.  Our syndrome effects our autoimmune system which effects the way we heal.  When having surgery to me it’s imperative that you keep the RSD/CRPS calm because it’s your best chance at healing as best we can.…
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