By Suzanne Stewart
Imagine that one moment you are walking around, sipping lemonade at a Summer arts festival and the next you are admitted into a hospital after a man ran through a red light. You awaken after a catastrophic motor vehicle accident feeling incoherent and in a lot of pain. That was what happened to me in 2002. I endured 3 years of brain injury rehabilitation, 8 years of Physical therapy, speech therapy and 8 surgeries. But this story is not about those days, it is about later getting diagnosed with RSD/CRPS.
I went in for surgery on my right foot, in April of 2007. Six weeks later I had my post-op check up. I knew something was wrong, before I arrived at my appointment. I was in more pain and it felt as though my foot was “on fire” and had “exploded” on the inside. I was told by the surgeon that day, that I “had a little RSD” and I was given Lyrica. I could not take the Lyrica, as it made me very ill. After researching “RSD” online, what I read sounded horrific! I decided to get a second opinion. After visiting an Orthopedic foot/ankle specialist, I was told that I had “Classic RSD” and he sent me to a Pain Management clinic. I did not go because I’d recently been through all of the “hoops” of the pain clinic, following the car accident. I wasn’t a candidate for a pain pump or a spinal cord stimulator and so I was sent back to my primary care physician. The pain Dr. had told me that “they are looked at under a microscope by the government”, therefore I had to have my primary Dr. do the prescribing. I ended up getting medications to try and help with the pain. I tried to finish up the PT but any touching of that foot was unbearable.
I was getting by, just trying to live day to day. Then in 2013, what was supposed to be a pacemaker replacement surgery turned into a total pectoral muscle rebuild and more. I was diagnosed with “severe systemic/full-body CRPS. I am very lucky to have a Neuro-Cardiologist who’s done research on RSD/CRPS. He tried to head off the full blown systemic CRPS by taking several precautions. Unfortunately, it did not work for me. Now I’ve explained how I got the CRPS but I’ve not told you about the depth of pain people endure when living with this Neuro- Inflammatory Autoimmune illness that is #43 on the McGill Pain scale. The copyrighted flame CRPS awareness ribbon is a perfect example of what it feels like. Personally, it is as though the entire left side of my body, inside and out; is on fire. It feels like a deep burning fire within and yet I feel and icy coldness as well. My knees, feet, hands and chest feel as though they might explode at any given time. This is only one of 8 or 9 high pain chronic illnesses that I live with. I think it is the illness with the worst kind of pain.
November is the month dedicated to Awareness of RSD/CRPS, also known as “Reflex Sympathetic Dystrophy” and “Complex Regional Pain Syndrome”. Health advocates and patients join with non profits, such as RSDSA (Reflex Sympathetic Dystrophy Syndrome Association); and we spread awareness. This is a complex and somewhat rare high pain illness. It is classified as a rare disorder by NORD (National Organization of Rare Disorders) and the FDA, but about 200,000 people are diagnosed annually. According to the RSDSA website, “CRPS occurs when the nervous system and the immune system malfunction as they respond to tissue damage from trauma. The nerves misfire, sending constant pain signals to the brain.” Usually it follows a surgery, a period of immobilization after a musculoskeletal trauma or some kind of injury to the nerves. It steals the very life out of so many people who are unfortunate enough to be diagnosed with it. Early diagnosis is the key to some instances of remission. Sometimes it takes years to even get a true diagnosis, due to the fact that many physicians don’t even know anything about it. But there are some people who can help. RSDSA is a 501(c)3 non profit organization based in Connecticut and was founded in 1984. I’ve come to know and love, the Vice President/director, Jim Broatch, MSW. Annually, during the month of November, we have quite a campaign going. RSDSA is always there to “provide support, education and hope to all affected by the pain and disability of RSD/CRPS”. They are always striving to do more research and develop better treatments.
Some of the events that I have going for this month, include a campaign that I call “#wearthemsharethem for RSD/CRPS”. You see, when the former RSDHope.org closed their doors in June 2016; there were many treasures “gifted” to me by my “adopted” family, the Orsini’s. I was given a number of temporary tattoos with the copyrighted CRPS flame awareness ribbon on them. I have put those to good use 2 years in a row, now. I ask people to just send in a SASE (self-addressed stamped envelope). I return their envelope with several of the temporary tattoos inside. I only ask for them to send me a photo of themselves or someone they love, wearing one of the tattoo’s, so I can post it to my Website “RASEforCRPS” (R.A.S.E. represents: Research, Awareness, Support & Educate). I use the hashtag #wearthemsharethem and we post to Instagram, Facebook and Twitter, in order to raise awareness. Also I have gotten a proclamation from the Governor of Michigan, Rick Snyder every year since 2013. The proclamation declares that in the state of Michigan, we recognize November as the month dedicated to the Awareness and support of RSD/CRPS. Then there are 3 fundraisers that I have going on this month: a Facebook fundraiser lasting all month, a LuLaRoe Album sale on Thursday, November 16th through Friday, November 17th for 24 hours, and a Pizzeria fundraiser and Awareness event on Thursday, November 30th from 5:00pm until 8:30pm. One more activity for Awareness and education that I did last year and am doing again this year is the “#30factsfor30days of November”. I post a daily fact about RSD/CRPS on each social media site. All facts are taken from the RSDSA website, with their permission of course.
Aside from what I am doing, which also includes writing, posting, blogging and sharing; RSDSA has many events taking place during the month of November also. They have an “event Calendar” on the website, but just to name a few: there is the 4th annual Central New Jersey RSD/CRPS Walk for Hope, Saturday, November 4, 2017, the 5th annual Fight the Flame 5K, in Charlotte, NC, on Sunday, November 5th, 2017, the Fight the Flame 5k, Mentor, Ohio, Sunday, November 5, 2017, CRPS Meet-up and Scavenger hunt by CRPS Forum, Los Angeles, CA Monday, November 6, 2017, Charity Ride for CRPS, New York City, Saturday, November 11, 2017, and Color the World Orange, World Wide, Monday, November 6, 2017.
Please help us share this information and raise awareness and support for this painful illness. The RSD/CRPS community truly comes together at all times, but mostly during this special month. We are not ones to sit in the side lines. This community comes together and creates a beautiful month of togetherness, awareness, support and raising money for the much needed research. The monies raised, also helps RSDSA provide patient assistance. One of the funds that helps RSDSA assist CRPS patients is the “Maria Lane Fund” and another is the Brad Jenkins memorial Fund. You can find out about these assistance programs at the RSDSA website as well. There is also an RSDSA informational YouTube channel at https://www.youtube.com/user/RSDSAofAmerica. The other part of RSDSA’s mission, is to fund research. They have funded more than $3 million dollars in pilot studies and pain fellowships.
Lastly, I want to personally thank Jim Broatch and RSDSA for the letter that they sent out on October 9, 2017. I was touched and I stand along side of many other RSD/CRPS patients/advocates. This letter that was emailed to it’s members, states that they “Oppose Cigna’s decision to Not Cover the cost of OxyContin in 2018” and they wrote also “We will continue to stand with our community during the War on “People in Pain”. Thank you to all who are doing their part to spread awareness and try to educate the medical professionals and the public regarding this illness.
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S. Pain Foundation. For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth. You can follow her here: TearsofTruth.com