I was a very healthy child growing up. Most who knew me, knew that I was a tomboy at heart. I wore baggy jeans, short shaggy hair, no makeup, and I truly loved being active, with any sport. Then in 5th grade, I began developing some medical concerns. I started suffering with knee pain and instability, at the young age of 11. Back then, medical was not something me and my family every really had to deal with. I went from my primary doctor, telling me and my family that I was just going through growing pains. But the "growing pains" began getting unbearable.
I believe I was in 6th grade when I underwent my first surgery. Of which my first operation, a bilateral lateral release, was done on both of my knees at the same time. The surgery helped for the next few years. Until 2005, when I was a sophomore in high school. At this point, my left knee had become extremely unstable, leading to countless dislocations. It was at this point, that another surgery, was really my own choice for resolution. At the age of 15 years old, I had another surgery on my left knee, where they had to reattach my lateral tendon to the tibial bone. The surgery went as well as expected. But this…was not the end to my issues.
Recovery was extremely miserable. I was placed in a locked knee brace to avoid any unnecessary movement. The pain, instead of getting better, started to get worse. I was seeing a very educated and knowledgeable Orthopedic at that time, who was aware, that was I was dealing with was unnormal to most healing during from a surgery recovery. So he referred me to an Anesthesiologist to have some further testing done. And then is when I discovered that I developed a Rare Nerve disease.
When I was first diagnosed, the CRPS (formerly known as RSD), it was specific to only my left leg. And as the next few months passed, so did any knowledge that my medical providers where able to provide me with. Back in 2005, there was not a lot of data for this kind of diagnosis. Let alone, at that time, Google wasn’t a thing we could run to for information. And with the confusion further developing, so did the progression of my disease. Within a few months, the CRPS, began mirroring to my right leg. At this point, the only thing the doctors really knew what to do, was control my symptoms and pain with medications. My first few years with the diagnosis, were extremely challenging for me and my loved ones. We were relying on the professionals for any and all advice.
Fast forward to today, I am a 34 year old young lady. And I still hate telling this to others; because I fear, what they hear, they will assume that they will develop the same way I have. And the most important thing I have learned through my life, is no two bodies are alike. Let alone this disease. It ravages our bodies, minds, and souls all in very unique ways. But my truth, is I now have full body coverage, including my optical and my digestion. It did not happen over night. Some days, months, years, were worse than others. While, some were more manageable.
To date, I have tried almost every treatment that I have been given as an option. I have seen so many doctors, that I lost count. Let alone, the medications that I have been placed on over the years. I have ran into just about every emotion you can from being diagnosed with what is known as Incurable disease. I have loved some, and I have also lost love. I have seen the darkest of suffering. Yet I have also, seen some of the most amazing love and compassion.
My journey with Complex Regional Pain Syndrome has been true to the diseases name, Complex. The truth is, I cannot change my body. I can't go to a dealer and trade it in for a new model. This is the only shell (body) I will have in this life. It takes time and effort, but my resentment is fading. And disappearing. It wasn't the easiest, growing into a teenager with such a challenging medical. And I did, for a very long time, resent life. I was angry, and in severe pain during the years you should be spending at friends houses and parties. And because of that, I mostly handled my emotions with negative reactions. CRPS is so much more than just a peripheral nervous disease. It changes everything. Physically, mentally, spiritually. But the one thing I like to remind my self…is even though I can't change a lot of what happens, I can be aware of it. I truly try to give myself the self talk soaked in honey. And show myself, despite all the odds, that I can keep living. Living as a human, and not just a Medical ID #.
And with that thought, I changed from being a Victim of CRPS, to a Warrior of CRPS. I put a lot of effort and work into my life these days. But its not probably not what you would assume: medications, trials, procedures, ect. Instead, the efforts for me are self love, movement, rest, nutrition, awareness, avoidance of triggers, and most importantly…its compassion. CRPS, formerly known as Reflex Sympathetic Dystrophy, used to ravage my life and mind. I still have my days. Sometimes, my weeks to months, where I can't do anything but hold my wrist to remind myself I still have a pulse. Yet, I also have days, where all I can do is laugh hysterically. And smile from the inside knowing, Today, I won the CRPS challenge.
My name is Jennifer Ray…and I am a CRPS Warrior. Always and forever.