CCK- We Feel So Good: A Reflection of Our Experience at the Center for Courageous Kids in Scottsville, Kentucky

By Samantha Barrett, RSDSA's Special Events Coordinator I have a confession to make- I have never been to summer camp. Or, at least I hadn’t experienced camp until this past week when I went to the Center for Courageous Kids, where there was a week for pediatric pain. This was made possible by a collaboration between The Coalition Against Pediatric Pain, RSDSA, U.S. Pain Foundation, Rock Out to Knock Out RSD, and of course The Center for Courageous Kids. It is amazing what we can do when we all work together. I was able to adventure to Kentucky to represent RSDSA at this camp and had some fun of my own! The children and their families were able to partake…continue reading

Easy Ways to Give to a Charity

By Samantha Barrett, RSDSA’s Special Events Fundraiser A question that we get frequently is: “How can I give to the community?” There are plenty of very easy ways to give back that can be a part of things you do every day! These methods don’t just apply to RSDSA, but to several different charities and causes. Goodsearch.com is your new best friend (http://www.goodsearch.com)!    Google is running our world, but GoodSearch will get you the same results, all while donating to charity! Go to the website and click “Find A Cause to Support.”  You can then search for your favorite cause (including RSDSA). Once you select the cause, you can sign in with Facebook or with an email address. Then, happy…continue reading

Current and Future RSDSA Initiatives on Behalf of the RSDSA Community

Current and Future RSDSA Initiatives on Behalf of the RSDSA Community By Jim Broatch, RSDSA's Executive Vice President, Director This month, RSDSA is partnering with The Coalition Against Pediatric Pain and The US Pain Foundation to co-sponsor a free camp for children living in chronic pain: THE CENTER FOR COURAGEOUS KIDS in Scottsville, Kentucky. The camp is July 14-17, 2015 for children ages 7-17. The goals of the summer camp are FUN, FUN, & FUN!!!! It is the first time we have ever found a camp for children living in pain. The camp is totally FREE for all participants and a parent/guardian who will stay at the camp with his/her child. Please go to www.tcapp.org and fill out an application…continue reading

Developing CRPS/RSD and Finding Hope

Hi there! My name is Katie and I’m the blogger behind Upcycled Treasures and A Handcrafted Wedding. I was diagnosed with CRPS back in August 2012, and remember how difficult it was to find information and inspiring stories. In fact, I generally ended my search feeling more discouraged than when I started, and this only seemed to make my symptoms worse. Can anyone else relate? The RSDSA website was the best source of information I could find, which is why I am so excited to share my story with you. I want you to know that there is hope, and not to be discouraged by what you read. However, I’d be lying if I didn’t admit that I am also…continue reading

Sammie Barrett is RSDSA’s New Special Events Coordinator

  My name is Sammie Barrett. I am the new Special Events Coordinator for the RSDSA. The RSDSA has been near and dear to my heart since a year after I was diagnosed.  I was diagnosed with RSD/CRPS 9 years ago after spraining my ankle in ballet. I danced 5 days a week for a minimum of 4 hours per night as well as teaching some classes. But once this "sprain" didn't heal correctly, that all changed. Five doctors later, someone finally was able to diagnose me. Unfortunately, this doctor told me I would never walk again, and that I absolutely would not dance again. As a thirteen year old little girl, my world had been turned upside down. But,…continue reading

The Handicap’s Appetite

By Nancy Meagher     Sometimes I still crave running and walking. It was a rare wedding celebration that I had not been moved by the music to dance. A few years ago our niece married a fine fellow from the south of France. As I had taken a few years of High School French, and as language is a hobby of mine---- I was placed at the reception table with: Sylvan's Lovely Aunts. Moved by American songs in a language that did not come easily, a friendship ensued. We danced our international hearts out. The French in their stylish slim heels – I in a sassy pair of patent leather flats that my friend Elisa insisted I buy. Tiger striped,…continue reading

How to Obtain the Best Medical Care for CRPS

Written by Steven Feinberg, MD, MPH Board Certified, Physical Medicine & Rehabilitation Board Certified, Pain Medicine Feinberg Medical Group Palo Alto, CA and Rachel Feinberg, PT, DPT Director, Physical Therapy & Functional Restoration Program Feinberg Medical Group Palo Alto, CA for the RSDSA blog. If you are reading this, it means you, a friend, or a loved one has been diagnosed with complex regional pain syndrome (CRPS). This article is not about diagnosing and treating CRPS but rather about how to obtain the best medical care for this diagnosis. There are many good reasons to obtain the best medical care possible for this diagnosis. First and foremost is that early quality treatment has the best chance of resulting in the best…continue reading

Multidisciplinary Treatment – Three Weeks in Utah

Written by Aubrey Haley for the RSDSA blog. In 2013, after living with full body CRPS for almost four years, I was afforded the opportunity to go to a treatment facility. My husband and I dug deep into the multidisciplinary treatment world, searching online and making phone calls for days. I knew I didn’t want to be checked into a rehabilitation hospital. Likewise, I didn’t want to be treated like a drug addict or a psych patient; I needed a facility that understood the intricacies of chronic pain. The Bridge Health Recovery Center kept popping up on my Google searches, like a sign from the universe. I was terrified to leave my family for almost a month, but I was…continue reading

Please join RSDSA for the Achilles International Walk for Hope and Possibilities on June 28, 2015 in NYC’s Central Park

I want to introduce you to Diane Simonson, a first-time walker in this year’s walk. I am a former ballet dancer. In 2006, I began to have problems with my legs. I was tested for MS, Lou Gerhig's Disease, and everything else under the sun. As many of us have experienced - doctors told me I was 'faking' it, and it was 'all in my head.' (Yes, I can magically make my legs swell to twice their size and make skin color changes! I ‘m an amazingly good faker!) Finally, I was diagnosed with CRPS/RSD in 2009 .I was also very, very fortunate to find doctors (a neurologist, two orthopedics, a pain management doctor) at HSS who still work together…continue reading

The Cynthia Penaskovic Memorial Fund

  Pain is a more terrible lord of mankind than even death himself. - Albert Schweitzer. Too often, life changes on a dime as my pastor frequently tells our congregation. Just ask any person suffering with CRPS when they developed CRPS/RSD and they can immediately relate the date and time. So it was with Cynthia Penaskovic, a vibrant naval pediatric flight nurse who developed CRPS/RSDS 25-years ago after a car accident in southern California. Her doctors at Scripps Torrey Pines in San Diego called it “one of the worse cases of widespread RSDS they had even seen.” Joan Penaskovic, Cynthia’s sister spoke of her subsequent “solitary life spent creating exquisite beaded art which she often donated, until she could no…continue reading