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Guest Blogger for RSDSA

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

Happy Disabiliday – A Letter from A Canadian CRPS Warrior

Published on April 25, 2017 under Guest Blogger for RSDSA
This Disabiliday blog was originally featured on Pain Matter's website. It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD. "You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post: Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity (There are additional References and Links at the end of this blog post.) This week, Paula sent me a beautiful letter to share with all of you (see below).  Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain. I feel delighted and honoured that…
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SPPAN Tracking State Issues- How Can We Help CRPS/RSD?

Published on April 18, 2017 under Call to Action
This blog was originally titled "How SPPAN Went From Tracking A Few State Issues A Year, To Monitoring 1,900- And Changing the Rules in Several States." It was initially posted on Connectivity. You can click here to find it in its original form. At RSDSA's Nashville conference, pain-related legislation was a major hot topic. Some of the most frequently asked questions were about pain legislation and how to move towards change. RSDSA was offered this blog by CQ Roll Call to help explain a little bit of what SPPAN does and how one person can make a difference. How can this help people with CRPS/RSD? How can we move towards progress? The article starts below: "Here’s how one organization (for…
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The Impact of Mindfulness on RSD/CRPS

Published on April 4, 2017 under Guest Blogger for RSDSA
By Guest Blogger Emily Salser Nunez How important is mindfulness and CRPS/RSD? According to Emily, it is crucial. Read Emily's story and then see how being mindful helped her.   Eight months after fracturing my small toe in a simple misstep, I was diagnosed with Reflex Sympathetic Dystrophy (RSD).  I had never heard of this disorder when my podiatrist concluded this was what was causing my excruciating pain and inability to walk.  I knew something was seriously wrong, as over time my foot felt like it was burning and became bluish-black in color.  So, at first, I was relieved that I finally had an explanation for what was happening to me.  But then the podiatrist looked at me with deep…
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You Know You’re a Hospital Kid When… Life with CRPS

Published on March 14, 2017 under Guest Blogger for RSDSA
By Guest Blogger, Melissa Lovitz This piece about being a hospital kid, especially one with CRPS/RSD, was originally posted on The Mighty. When you’re a spoonie you spend a lot of time in the hospital. About 10 years ago, I spent more than 10 cumulative weeks of my freshman year of high school either in the hospital or at doctors’ appointments. During my middle and high school years, my experiences with reflex sympathetic dystrophy syndrome (or CRPS) landed me two six-week stays at Children’s Hospital of Philadelphia, two 10-day stays at Boston Children’s Hospital, and more doctors’ appointments than I can realistically count. When I was in high school, most of my inside jokes were with physicians who liked to dance every morning. I got…
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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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How RSD Potentially Stole My Dreams- Cope With RSD/CRPS

Published on February 21, 2017 under Guest Blogger for RSDSA
By Guest Blogger Tatiana Being diagnosed with RSD/CRPS is challenging at any age. Being young and going through the challenges of school can make it hard to cope for children and teenagers. Tatiana writes about her experience being diagnosed with RSD/CRPS, her stolen dreams, and how she has ultimately learned how to cope. When I was a young girl, only five years old, I had crazy dreams. Every single time someone asked me what I wanted to be when I grew up, I’d smile, and tell them that I was going to be a dancer. A ballet dancer, to be specific, though I often dreamed of ballroom dancing. Getting to wear a ballgown, heels, and having a handsome gentleman’s hands…
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The Club No One Wants- The CRPS Club

Published on January 18, 2017 under Guest Blogger for RSDSA
By Guest Blogger Jamynne Bowles Jamynne details her life, from being a young shy girl, to becoming a paramedic that suddenly joined a club she never asked to be in- The CRPS Club. What has life taught Jamynne? What is to come for The CRPS Club? Growing up in Northern Virginia, I remember being the shy girl who always wanted to fit in.  Overweight and pudgy, I was bullied a fair amount during elementary school.  You could say I was that proverbial “fat girl” that no one wanted to play with.  Unless, of course, it was kickball.  I had a strong leg, so generally I was one of the first few picked.  But if we played Red Rover, tag, or…
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Sing a Song- Getting Vocal About RSD This New Year

Published on December 27, 2016 under Guest Blogger for RSDSA
By Guest Blogger Shannon Leidig Everyone has a song to sing, with every song being our own stories. Shannon writes about her song, what it means to sing it, and why it is important to hear the songs of others, whether they have RSD / CRPS or not. Oh my, time surely does fly – you know the old saying the older you get the quicker it goes? So true.  I can hardly believe that another year is almost done and gone and I can honestly say good riddance – get gone and soon!  While there have been many blessings there have been a heck of a lot of upside downs/inside outs craziness that make me just want to smack…
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From One Family to Another- A Pediatric CRPS Journey

Published on December 20, 2016 under Guest Blogger for RSDSA
By Guest Bloggers Bobby and Lauren Gellert The Gellert's daughter, Zoe, has faced CRPS head on. She has been inspired to do some great things. See what Zoe and the Gellert family are doing and what they learned about pediatric CRPS. “Dad!  You need to come home.  The doctor said nothing is broken or torn, but I still can’t put my foot on the floor.  It feels like someone is sticking a knife through my heel and it’s burning inside”. These were the words of our 11-year-old daughter, Zoe Gellert, who the day before was involved in a crush injury to her right ankle. Zoe was immediately non-weight bearing and was describing pain symptoms that made no sense based on…
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CRPS & GI – Frustrations From a Nurse’s Perspective

Published on December 13, 2016 under Guest Blogger for RSDSA
By Guest Blogger Beth Seickel, RN, BSN CRPS and GI issues may have some correlation. Nurse Beth details her perspective on this issue as both a person living with chronic pain and as a nurse. How can we prepare ourselves for hospitals? How can we educate the staff? As we educate the world around us, here is her story: So here goes! The frustration of living with CRPS spills over into everyday life we would all agree. Yet, speaking as a CRPS patient and Nurse, I have gained a unique point of view both as the health professional and now as the patient. Yet, my vulnerability as a patient was tested from an ER visit for acute abdominal pain and…
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