Donate
Events

Guest Blogger for RSDSA

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

A Nurse’s Fight Back Against CRPS- Impacting Other Nurses

Published on October 17, 2017 under Giving Back
By Guest Blogger Nurse Beth Seickel When RSDSA was asked to be a part of ASPMN-LI's 16th Annual Pain Conference, we were happy to join. Nurse Beth, a CRPS warrior, is one of the first people we wanted by our side during this. She was kind enough to write about her experience. She is a nurse fighting CRPS while educating others.   RSDSA was invited to be part of the “ASPMN-LI Chapter‘s 16th Annual Pain Conference” at the DeMatteis Center for Cardiac Research and Education in Greenvale, New York, an annex of St. Francis Hospital on Long Island. The (ASPMN-LI) American Society for Pain Management Nursing-Long Island Chapter’s mission: “TO ADVANCE AND PROMOTE OPTIMAL NURSING CARE FOR PEOPLE AFFECTED BY…
continue reading

The Top 10 Shoe Brands for CRPS From a CRPS Perspective

Published on October 10, 2017 under Guest Blogger for RSDSA
By Guest Blogger Ashley Epping I developed CRPS at 12 years old in my left wrist. After being diagnosed, I spent the next six years dancing competitively, staying at the Pediatric Cleveland Clinic, creating art, traveling abroad and applying to colleges. I never once thought about my shoe choice because I didn’t need to. Though I would always see others in my support groups posting photos of shoes that worked for them, and to be honest most were not versatile enough to wear for specific occasions such as professional or dressy settings. For the first six years my pain was only located in my upper body, but in the following years the pain spread to the lower regions. For the…
continue reading

There’s a Monster in the House- CRPS Even Affects A Caregiver

Published on October 3, 2017 under Guest Blogger for RSDSA
By Guest Blogger Stephanie Umlor While we live with CRPS daily and can let it take over our thoughts, we often don't realize how our loved ones are affected. This is a reminder that every caregiver and loved one can be affected by this CRPS "monster" as well. A reality of anger, hurt, and pain rages havoc on our bodies and minds CRPS is a methodical monster. Convincing us that we are helpless, worthless, a burden, as well as unable to to love someone the same way as we did before. Leaving us in an atmosphere so overwhelming we might as well stay. I call this “ CRPS Pain Limbo;" I know most medical professionals refer to it as “…
continue reading

CRPS Retreats and Gatherings- The Positive Impact of the YA Retreat

Published on August 29, 2017 under Events
By Guest Blogger Melissa Lanty RSDSA is focusing on how we can better serve the community, especially with November (CRPS Awareness Month) quickly approaching. One of our young adults contributed this blog shortly after our first young adult weekend, which was a great success. Read what Melissa has to say about how this weekend impacted her! Be sure to keep an eye on our events calendar for all things CRPS coming up! The first time I heard of CRPS/RSD was when my cousin, Ken, was finally given a diagnosis for the intense, burning pain he had been experiencing.  By the time the doctors figured out his diagnosis it already spread, jumped, and did all the horrible things this disease can…
continue reading

Palliative Care for the Person with Complex Pain Generating Syndromes

Published on August 23, 2017 under Guest Blogger for RSDSA
By Dr. Terri A. Lewis What is palliative care and what does it mean for people with complex pain syndromes? Dr. Lewis sheds light on this topic for people that are curious about it and would like to know more. What is Palliative Care? Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illness. This type of care is focused on providing relief from the symptoms and stress of a serious illness. The World Health Organization (WHO) defines palliative care according to the following criteria - Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and…
continue reading

RSD Is An Angry Ocean- Why It’s Okay to Be Angry

Published on August 1, 2017 under Guest Blogger for RSDSA
By Guest Blogger Sara We love to post uplifting stories about people living with CRPS/RSD. But, what about the moments where it is nearly impossible to be positive? Do we let that go unnoticed, or should we reach a point of acceptance that RSD comes with a range of emotions. Sara covers her feelings on RSD and how it is like an angry ocean.   Each day, I face the endless ocean, scanning the horizon, tipping my head to the sky searching for signs of storms.  Will the currents be calm, allowing me to drift easily under a sunny sky with my aching and ancient bones; or will the storms clouds gather, thunder booming, lightning splitting the horizon with the…
continue reading

RSD and Me- A New Full Time Job

Published on July 11, 2017 under Guest Blogger for RSDSA
By Guest Blogger Sylvia Miller Being diagnosed with RSD CRPS can cause people to go through a range of emotions: denial, frustration, confusion, sadness, incompleteness, etc. Sylvia writes about what it was like trying to find an answer that wasn't RSD/CRPS. What happens after the RSD diagnosis? How can you impact your life regardless of the pain?   3 years ago, I suffered a fall and fractured my ribs.  From that point forward, it seemed to be that I reached out to any doctor to [try to] understand the pain I encountered.   A physician diagnosed me as having RSD, but I thought, surely, this doctor is wrong.  So, I continued to research and search for any understanding about RSD and…
continue reading

My CRPS Experience at the Young Adult Weekend

Published on July 4, 2017 under Events
By Guest Blogger Jess Henry-Cross Jess was a participant in our very first CRPS Young Adult Weekend this past June. She was more than happy to write a brief blog about her experience and how it changed things for her. Why are events like this so important? Read about what Jess experienced to learn more.   Around 2:30 in the afternoon on Sunday, June 18th I found myself holding back a few (happy) tears.  I was driving home after spending the last 45 hours with a group of women who recharged me in a way I had never even dared to hope for.  I didn’t want the weekend to be over.   I signed up for the RSDSA Young Adult Weekend…
continue reading

How CRPS Is Like a Wailing Alarm That Never Shuts Off

Published on June 27, 2017 under Guest Blogger for RSDSA
By Guest Blogger Roberta Hierath This blog about CRPS being a wailing, screaming alarm that never shuts off was originally featured on The Mighty. We were given permission to post it as a part of #TheTuesdayBurn, especially since it explains the overwhelming feelings that CRPS can bring on. One thing I’ve learned in seven years of living with Complex Regional Pain Syndrome is that there is almost no one in the regular course of my life who truly understands what constant, unwavering and intense pain really feels like. I am glad for that fact as I wouldn’t wish this on anyone, but it does make it harder for people to relate to my daily experience. So I am going to try…
continue reading

7 Things I Can Do When The Pain Is Too Much- CRPS Blog

Published on June 20, 2017 under Guest Blogger for RSDSA
By Guest Blogger Kelly Hodgkins This blog was originally posted on Moonglotexas. Click here to view the original post. This post, entitled "7 Things I Can Do When The Pain Is Too Much" was posted with permission and offers great insight into things that you can do, or try to do, when your CRPS/RSD pain feels like too much. My CRPS has a habit of flaring up on days I’ve made plans to do fun things that rejuvenate my soul. Snuggled up under my duvet, I visualize the landscape before me trotting along on my horse. I rearrange flower beds, trim branches and try out that great idea from a book. Coffee in hand, I catch up with a friend…
continue reading