Donate

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…
continue reading

Fear of Distance- RSD / CRPS and The Journey Away from Home

Published on December 6, 2016 under Guest Blogger for RSDSA
By Guest Blogger Rachel Ehrenberg Rachel is a member of the RSD / CRPS community that had the opportunity to be a part of DCP, or the Disney College Program. She details what it is like to be so far away from home, for the first time, with CRPS. 997.2 miles. 997.2 minutes. 16 hours. These are just numbers that form a distance to most people. But when you are living with a chronic illness, 997.2 miles is a long way from home and your comfort zone. That’s exactly what it was for me. In January, I packed up my things and moved from South Jersey to Orlando. I was beginning a journey of a lifetime and starting the Disney…
continue reading

Magic Wand- Experiences Living with CRPS

Published on November 29, 2016 under Guest Blogger for RSDSA
By Guest Blogger Alessia Zen A story of living with CRPS (the struggles and triumphs), the hope for the future, and what the community truly needs. Ever the dreamer as an eleven year old little girl I wrote my life goals on a yellow post-it note, proudly signing it with juvenile cursive writing- in my mind by signing with a "signature" this became official just like a real-life grown up. I wrote that I was going to become a doctor/archaeologist (emphasis on the slash, in my mind these careers were not mutually exclusive), challenged myself to read one thousand books, hoped to write a novel, promised to travel the world seeing all of its wonders, and that I would discover…
continue reading

CRPS and Mental Health- Stress and Other Elements

Published on November 22, 2016 under Guest Blogger for RSDSA
By Roderick Borrie, Ph.D.   The last thing Penny expected was to be seeking help from a psychologist.  She had always been a fiercely independent person who could take on most problems and solve them on her own. Penny was the one who took care of others, not the other way around. An accident at work in January, 2015 changed all that. After some convalescing and physical therapy, Penny assumed that she would be able to bounce back to her old self. But that didn’t happen. At first she was merely frustrated by the tenacity of the pain in her neck and shoulder, but it evolved into fear as her pain worsened and spread into her left arm and down…
continue reading

Medication Summary for Intractable Pain, CRPS/RSD

Published on November 15, 2016 under Guest Blogger for RSDSA
By Nancy Sajben, MD The following blog post was written on 11/6/16 by Nancy Sajben, MD for her website. You can visit her website by clicking here.   I spoke only briefly this morning at the RSDSA conference but there is so much to add. Most importantly, thanks to RSDSA for helping so many people with CRPS. They fund pain research, they are starting a free children’s camp, and now offer physicians one hour free CME teaching about CRPS. Holistic view, 36 points – that’s how I view caring for brain and nerves, very similar to the details used by UCLA Alzheimers Research Unit. In June 2015, I posted on their work on memory loss, dementia. We know chronic pain…
continue reading

Judi Riley’s Art of Storytelling with RSD- You Can Do It!

Published on November 8, 2016 under Stories of Hope
Interview Conducted by Samantha Barrett Judi Riley is one of our fabulous Facebook community members. When we got word of her books with the incredible images that accompanied them, we knew we had to interview her. Judi, who has had CRPS since May of 2009, is an author, illustrator, graphic designer, artist, and mom who is conquering life with RSD or CRPS. After an introductions, Judi and I exchanged emails for this interview. Say "Aloha" to Judi, everyone! Samantha Barrett: You write and illustrate children's books, which is amazing! What inspired you to do that? Judi Riley: I've always been a storyteller and for as long as I can remember, I have doodled pictures to go with my stories. My…
continue reading

A Teen In Pain Making a Difference- Keegan’s CRPS Story

Published on November 1, 2016 under Events
By Guest Blogger Keegan. Introduction by Samantha Barrett It's CRPS Awareness Month. RSDSA has several events happening all over the country this month. We will also be sharing some stories of hope and stories to raise awareness for CRPS/RSD. We were recently introduced to Keegan, a teenager who was recently diagnosed with CRPS. She's not just any teenager; she instantly wanted to raise awareness for CRPS/RSD. Read a little bit about her and about her event! She wrote this blog to kick off our awareness month! Hi all! Happy National CRPS and RSD awareness month! My name is Keegan I'm 15 years old, here's a bit of my story. I left my hometown of Poughkeepsie New York in August to…
continue reading

Color the World Orange 2016 – CRPS Awareness

Published on October 25, 2016 under Events
It all starts with an idea. That’s how our friends over at Color the World Orange became successful. They had an idea and acted upon it. Now, we are approaching the 3rd Annual Color the World Orange Day on November 7, 2016! Color the World Orange is a day of worldwide awareness for CRPS. Taking place on the first Monday in November, Color the World Orange encourages members of the CRPS/RSD community to take action. Whether people are getting their friends and family to wear orange to school or work, or if they are getting proclamations for their city/state, every part of Color the World Orange helps make a difference. This year, Color the World Orange is even listed on…
continue reading

Don’t Judge a Book By Its Cover- What CRPS Taught Me

Published on October 18, 2016 under Guest Blogger for RSDSA
By Guest Blogger Shannon Leidig Greetings everyone!  Happy Autumn! I so cannot believe we are almost to the end of October, which means the cold and snow of winter is just around the corner. I for one so am not NOT ready for that.  I truly hope everyone is doing well.  I have been meaning to write another blog for quite a while; however, this thing called LIFE just happened to get in the way – as this was not the blog I had planned to write.  That being said – there has been a situation that has happened that has totally rocked my world and that [is why] I feel I need to write this one titled: “Don’t Judge…
continue reading

The Myth of a Cure for CRPS

Published on October 11, 2016 under Guest Blogger for RSDSA
WHAT DOES REMISSION LOOK LIKE? By Dr. Katinka van der Merwe Dr. Katinka van der Merwe is a chiropractor who practices in Fayetteville, Arkansas. She treats the Central Nervous System, (specifically the Autonomic Nervous System) with the “Three Punch System”, recently revised to the “Four Punch System.” Her work is detailed on this site in an earlier blog. She has treated CRPS patients from all over the world in her clinic, and is the author of “Putting Out the Fire: New Hope for RSD/CRPS Patients,” expected to be released on Amazon in November. Her clinic number is 479-966-9766. Through the years of working with CRPS patients, I have often encountered what I refer to as “the myth of remission.” What…
continue reading