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Category: Guest Blogger for RSDSA

Bloggers from the CRPS/RSD community that write pieces for our blog will be featured here.

CRPS Awareness Day 13: Becoming an RSD Warrior

Published on November 13, 2017 under Guest Blogger for RSDSA
By Guest Blogger Amy Marie Suss There are moments in which we realize our lives are changing, forever. Amy Marie Suss realized hers was changing a decade ago. Little did she know, this day would lead to RSD/CRPS and to becoming a warrior against pain. April 30, 2007.  That was the day my entire world changed.  I was driving home from work when a 17-year-old kid blew a stop sign, going well over the speed limit, while trying to make a ninety degree turn less than fifty feet in front of me. There was nothing I could do and I hit him -- head on. I remember bits and pieces from the rest of that day.  The sound of my…
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CRPS Awareness Day 11: A CRPS Veteran on Veterans Day

Published on November 11, 2017 under Guest Blogger for RSDSA
By Shara Wilkey, Capt. USMC Ret. I graduated from Fountain Valley High School after marching I President Ronald Regan’s Inaugural Parade plating the Tuba. I auditioned for the US Marine Corps Band about two-months after returning from Washington DC. Within a month of graduating high school I was at Parris Island, South Carolina at boot camp! After boot camp, I went to the School of Music at Little Creek Amphibious Base, Norfolk, VA for 6-months. Then I was stationed at 29-Palms, Ca Drum & Bugle Corps. During this time, I was able to play at a taping for a USO Anniversary in Hollywood, having dinner with Scattman before he passed away then the Drum & Bugle Corps Unit drove down…
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CRPS Awareness Day 10: CRPS Teacher Turned Student

Published on November 10, 2017 under Guest Blogger for RSDSA
By Guest Blogger Lara Santoro, Ph.D. Lana Edwards Santoro, Ph.D., is a teacher, educational consultant, writer, and amateur photographer. She also lives with Complex Regional Pain Syndrome (CRPS). Embracing CRPS turned this teacher back into a student. Lana’s interest in education began when she was in elementary school. She loved reading and never passed an opportunity to visit books in the library. She remembers setting up a “school” at home in her living room, and how her grandfather lovingly subjected himself to her improvised reading lessons. Lana’s early interest in teaching and learning became her professional work. With an interest in multidisciplinary, integrated approaches to education and health, she taught in a residential treatment program, psychiatric hospital, and a center…
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CRPS Awareness Day 9: My CRPS and DRG Story

Published on November 9, 2017 under Guest Blogger for RSDSA
Writen by Marcia Nolting for the RSDSA blog. Treatments for CRPS or RSD vary per person. We would like to note that you should always consult with your medical team about treatment options. For Marcia, DRG was the right answer. See what she was able to do due to DRG. My name is Marcia and I've had RSD for almost ten years and as of writing this, am post Abbott DRG stimulation surgery 4 months. A decade ago, I tripped over a step and thought someone had cut my left ankle/foot off, it hurt so bad. The pain was instant, continuous and unrelenting. The ER thought I was insane and sent me home with what they termed a "sprain" and…
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CRPS Awareness Day 8: The Young Chronicle with Vicky

Published on November 8, 2017 under Guest Blogger for RSDSA
By Ashley Epping The Young Chronicle is a new blog series started by Ashley to get insight on CRPS/RSD from young adults. Each blog will offer insight to the unique challenges that young adults with chronic pain face and their ways of coping, healing, and continuing on. Vicky is a 25 year-old from Illinois who was diagnosed with CRPS nine months ago. Her original injury was a trauma to her foot while playing soccer. As she started seeing doctors and making trips to the emergency room, her pain was dismissed as a bruised bone. Once she was accurately diagnosed with CRPS, the doctor said to her “If you don’t act on this fast, you will be disabled for the rest…
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CRPS Awareness Day 7: Ketamine Treatment Information

Published on November 7, 2017 under Guest Blogger for RSDSA
By Guest Blogger Allison Wells, MD Dr. Wells shares her take on ketamine treatment information for CRPS. She offers insight to what she thinks works best, the effects CRPS can have on a person, and the impact of infusions. Please note that this is Dr. Wells' opinion and we advise that all members of the CRPS community consult with their doctor about the best options for them. CRPS / RSD can cause intense, chronic pain and can be debilitating. Many CRPS patients have lost jobs, friends and family relationships due to their illness. Many have been forced to give up activities they love and most also suffer with anxiety and depression related to their condition. Physicians and researchers are still…
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CRPS Awareness Day 5: My CRPS Story

Published on November 5, 2017 under Guest Blogger for RSDSA
By Guest Blogger Suzanne Stewart Suzanne is an active advocate for all things chronic pain. She is the voice behind social media sites like RASEforCRPS and is an active ambassador for the US Pain Foundation. Suzanne also helps RSDSA with our awareness and fundraising efforts. Read her story below. My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries, including a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from…
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CRPS Awareness Day 3: The Media Coverage of Chronic Pain

Published on November 3, 2017 under Guest Blogger for RSDSA
By Guest Blogger Melissa Lovitz. Melissa initially featured this post on her blog. The Washington Post recently published an article about CRPS titled “The Strange Pain that can Overcome Kids, Especially High-achieving Teenage Girls.” The article was shared with me by someone who has never experienced a chronic, physical illness and believes that you can actually have unlimited spoons. The premise for sharing this article was simply, “I thought it could be interesting”. Here’s the thing about living with CRPS: it’s not interesting, it is excruciating.  This article wasn’t an easy read for a person who lives with this condition or in general. The story was raw and real in its recollection of the girl’s suicidality and deep despair. I know that…
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CRPS Awareness Day 2: Burning Nights CRPS Support in the UK

Published on November 2, 2017 under Guest Blogger for RSDSA
By Guest Blogger Victoria Abbott-Fleming Our friend, Victoria, runs a support network for people with CRPS in the United Kingdom (UK). We asked her to write up a little bit of what Burning Nights does. Here is what she wrote. Thank you, Victoria! Burning Nights CRPS Support finally began and went live in September 2014 and we became a registered UK charity in April 2016. At the time of it being set up not a single UK charity or website existed that was dedicated to raising awareness & supporting people affected by Complex Regional Pain Syndrome (CRPS) not only those living with CRPS but including the carers, family members, friends and loved ones. There was just insufficient and no support…
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CRPS Awareness Day 1: A Glimpse Into My Life

Published on November 1, 2017 under Guest Blogger for RSDSA
Written by Tracy Coval for the RSDSA blog. Tracy Coval gives RSDSA a look into her life with CRPS and dystonia. See what she has done through her journey. Note this was initially posted on her blog, which can be found at this link (click here). Some of the images may be too graphic for some readers. I was first diagnosed in 2002 with Complex Regional Pain Syndrome (CRPS/RSD) when I was 11 years old after a running injury. I was running in gym class and twisted my left ankle in. When I told the gym teacher I couldn’t run anymore, he wouldn’t believe me and had me keep going. The pain kept progressing, and I saw an orthopedist who…
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