I wasn't sure if this was a piece worth of publication, but after some convincing from a few people that read it, I decided to post it.
A martial artist with 5+ chronic pain conditions and several other conditions that cause significant pain. Hmm. There's something you don't hear about everyday. Well, the former is a pretty accurate description of me. I've lived in 24/7 chronic pain in some part of my body since December 2011, almost 5 years now. Now 20 years old, my medical saga started when I was 15, after nagging knee tendinitis from playing varsity basketball that would not go away with weeks and weeks of rest. We would later learn that this was one of the earlier signs of the presence of joint hypermobility syndrome/Ehlers-Danlos Syndrome-Hypermobility Type. Basically, since then, I've been in constant pain, basketball has become a thing of the past, and I've been forced to grow up. Fast.
When you develop chronic pain/illnesses, some people may become distant for a variety of reasons and the support of friends and family may be lost. I've been extremely lucky that my family has stood by me through every challenge, medical or not. Most of my friends have been pretty good too, but unfortunately, some have turned and moved on, simply because of my conditions. Those friends are the easiest and hardest to miss all at the same time. Easy because I know the biggest reason they left my life is because they weren't capable of bearing the load of going through life alongside me. On the other hand, some friends have been terribly hard to lose because they were the people I least expected to turn on me and there are many things I still miss about them.
So, as you can probably imagine, all of this can be very psychologically difficult to deal with at any age, especially as a teenager. I eventually found myself in a wheelchair full time due to complex regional pain syndrome, another one of the pain syndromes I developed. This was one of the most crushing blows to me as an athlete. I couldn't remember life without sports and the daily routine of going to school, coming home, doing my homework, and going to doctor's appointments was really unappealing to me. It was too boring. I needed a change of pace.
Over Christmas break during my senior year of high school, I made one of the biggest decisions of my life and I've never looked back. When I was young, I had done taekwondo for about a year and a half. I got about halfway to black belt before my five sports became too much to handle. Taekwondo was the first sport to go.
I had seen an ad on Facebook almost everyday for well over a month for a new school opening near me. I thought about it, laughed it off, and moved on every time I saw it. "Right, I'm totally up for that right now. I'm in a stinking wheelchair." Until one day, I decided that that was going to be my motivation to overcome the pain and get out of that wheelchair. To my surprise, my parents were in agreement and we signed up a few days later.
In the nearly 3 years since I returned to martial arts, I've earned my 1st Degree Black Belt, become an instructor, and I'm in the final months before my testing for 2nd Degree. Most importantly, I gained an incredible group of instructors, friends, and students that I consider to be my family. Nothing makes me happier than to see them everyday when I go in to teach or train. They've had my back unconditionally in some really life-changing situations. I'll never forget calling my instructor from my hospital room 5 days before my black belt test, crying, because the doctors told me that I wouldn't be able to walk due to an extreme exacerbation of my dystonia. Long story short, he told me to focus on getting out of the hospital first and that we would make it work. I didn't truly believe that I would still be able to do it. Fortunately, he never lost faith in me that I could still test, even if it wasn't exactly the most conventional way. Together, 4 days before the test I'd spent the last two years working toward, we reconfigured the whole thing. I practiced it and on the day of, it honestly couldn't have gone any better. Let's just say that there was barely a dry eye in the whole place.
Since then, I've had days where it was absolutely unbearable to move. I still do. Chronic pain just gets the best of me some days. Fortunately, my motivation for exercising even when my nerves make me feel like me whole body is being doused in gasoline and set on fire from the inside out, comes from the amazing people I am surrounded with each and every day. There have been days that the only reason I have been able to get out of bed and move is because it happened to be a night when I was scheduled to teach a class. The kids I have the honor and privilege of working with are a huge motivation to me. They don't know it, but they are like my personal army, especially on the days when the pain is unbearable.
Of course, there are also my incredibly supportive classmates who have helped guide and cheer me on the last 3 years. They watch out for me better than I watch out for myself (I'm really stubborn!) and push me to be my very best.
I've come a long way from the scared 17 year old in a wheelchair who didn't know how to effectively live life while dealing with chronic pain, and I owe it all to the life skills, training, and people I have met through taekwondo. It isn't just a sport for me anymore. It is truly a way of life and while I have had stints in the wheelchair in the years since, it has only been because I have physically been unable to walk. Pain no longer holds me back and I'm pretty proud of that.
November is RSD/CRPS Awareness Month. RSD/CRPS goes by many names: Reflex Sympathetic Dystrophy, Reflex Neurovascular Dystophy, Complex Regional Pain Syndrome, hand-foot atrophy, Sudeck's Atrophy, Amplified Musculoskeletal Pain Syndrome, and causalgia (to name a few common ones).
So what is RSD/CRPS? To start, it is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. This ranks higher than cancer, amputation of a limb, and unmedicated childbirth. Because it is so painful and it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the "Suicide Disease." We lose too many RSD/CRPS warriors because the pain is just so unbearable. I personally have lost several friends to the disease and I'm always fearing who will go next. Every RSD/CRPS sufferers has been to the deep dark place, where they just want to escape the pain, but not everyone climbs out of it.
RSD/CRPS is a disease of the central and autonomic nervous systems. Within the autonomic nervous system, there are two branches: the parasympathetic or "rest and digest" mode and the sympathetic or the "fight or flight" response. With CRPS, the sympathetic nervous system is inappropriately activated for a prolonged amount of time. While it is more prevalent in women, men can get it as well. CRPS is a diagnosis of exclusion, meaning that doctors have to test for everything else before they can diagnose CRPS. Bone scans, thermograms, EMGs, and QSARTs can be used to help support diagnosis. I was diagnosed off of a grossly abnormal QSART. Therefore, it is easily misdiagnosed/undiagnosed. While CRPS may not be life threatening by itself, several people, including myself have nearly lost their lives to it because of botched procedures, failed therapies, severe allergic reactions, and side effects of medication.
There are two kinds of CRPS. Type 1 and Type 2. Type 1 occurs without a direct injury to a nerve. Many people with type 1 CRPS do not know why their symptoms have started. On the other Type 2 CRPS, formerly known as causalgia, occurs after a direct injury to a nerve causing some degree of damage.
Regardless of whether someone had type 1 or type 2, the general course of the disease is similar. Most people experience a burning, stabbing, shocking, gnawing, crushing, throbbing, and cold pain. Every person is different, so these are just a few ways that someone with CRPS might describe their pain.
Some other symptoms of CRPS include:
-Allodynia: hypersensitivity to light touch
-Hyperalgesia: extreme hypersensitivity to pain
-Changes in hair and nail growth
-Skin color changes
-Skin texture changes
-Changes to sweating patterns
-Stiffness in joints
-Delayed wound healing
-Hypersensitivity to sounds and light
-Dystonia: the involuntary muscle spasms causing a fixed contracture of a single extremity or multiple extremities
-Myoclonus/tremors: the quick random jerking movements
-Osteopenia/Osteoporosis: bone density loss due to reduced blood flow
-Failure to Thrive
The CRPS community must band together to get us the cure we so desperately deserve. Remission is possible, but we need a CURE. It all starts with AWARENESS. Join us on November 7th, 2016 to "Color the World Orange". Simply wear an article of orange clothing, snap a picture and post it to social media! Until then, "Keep your chin up and charge the mountain!"
Please visit the following websites to learn more about RSD/CRPS:
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