As I sit here at my computer writing this, I am in awe. At this very second, I am waiting for my medications to dissolve in my mouth and my left foot is screaming because I messed up my toe doing martial arts. Medications, pain, nausea, dizziness, blurred vision, numbness, tingling, and… martial arts? What do all of those things have in common? They have all become a huge part of my life in the last 36 months, and I definitely wasn’t ready for it.
It’s been three years since my life was flipped upside down. Three years since I learned of the horrors of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. Three years ago, a doctor told me it couldn’t be this because I’m young, but ordered the sweat test that ended up confirming my diagnosis. October 17, 2012 10:38 AM. I was sitting in my high school elective entitled “The Presidency” when I felt this terrible searing pain like nothing I had ever felt before. I remember my right pinkie feeling so hot that I could have sworn it was on fire. I vividly remember gasping as this overwhelming pain enveloped my pinkie. How could a FINGER hurt so much? My solution was to apply ice to my visibly red, heat radiating, swollen sausage of a finger. I would quickly learn how bad this would be for my body. A big RSD/CRPS NO-NO!
I am one of the lucky people with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) that got an accurate preliminary diagnosis the day after my symptoms started. Unfortunately, by then, it was still too late. I believe that the knee injury I sustained in December 2011 irreversibly damaged my autonomic nervous system. While there was pain associated with that injury, no one realized that the prolonged amount of time for the pain to subside was grossly abnormal. This is what I believe was the start of my saga. While I have been into short “remissions” twice, I have not been successful at maintaining it. In the last year, my RSD/CRPS has gone internal and affects my gastrointestinal system. More pain in another place. I guess when I think about it, internal CRPS was formerly considered Stage 4. Intractable CRPS. In my positive mind, the only way to go is up from here.
I could moan and complain some more about RSD/CRPS and all the problems it has caused/continues to produce, but nope! Today I am going to focus on the many things that I have been able to accomplish in the last three years while coexisting with RSD/CRPS.
I graduated high school with highest honors and was accepted into a world-class university to (hopefully) study Emergency Medicine. I am extremely lucky to be at such an excellent university for my undergraduate years. The environment is phenomenal, and the people truly make the experience pleasant.
I managed to get my EMT certification and my Outdoor Emergency Care certification allowing me to work as an EMT and a ski patroller respectively. I am also taking a class this December to become a Wilderness EMT, which I am really looking forward to this winter. I cannot imagine my life without EMS! It has become such a huge part of me and my interests.
I (re)started taekwondo in January 2014 at a brand new school not far from my house. I never would have returned to taekwondo if it weren’t for my diagnosis and need to find alternative ways to stay active that didn’t require running 100% of the time. What started out as my motivation/opportunity to get myself out of the wheelchair and get stronger has become so much more. I don’t know what I was honestly expecting when I made that decision to come back, but I most certainly didn’t imagine it the way it is today.
I am currently maintaining my streak of 6 consecutive years of Nature Valley NASTAR National Championships qualification, and I am looking to extend it to 7 consecutive years this season. When I started ski racing eight years ago, I knew that I wasn’t going to stop until I couldn’t physically ski anymore. It has had that addictive characteristic from day 1.
These are just a few of the many wonderful things that have happened since that fateful morning, October 17, 2012. There is one huge thing that I have left out. That is the support of my family and friends. I wouldn’t be where I am today without each and every person in my life. On this bittersweet day, three years later, I am going to drive an ambulance to complete my Emergency Vehicle Operators Course, and later I am going to enjoy the company of some of my closest friends. There’s no room for tears today. Today is all about climbing the mountain and reaching for the stars.
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!