My Story of Survival

By Victoria, Reflex Sympathetic Dystrophy, United States, March 1, 2020

The Start

In 2008 I was beginning my Junior year of high school, when on November 1st, while moving my great grandmother into a new apartment my world as I knew it crumbled around me. I dropped a marble table on my foot. Instantly it was the most excruciating pain I had ever felt. I though it was broken. I had xrays MRIs CTs and nothing was wrong with my foot, but the doctor put a cast on anyways just to make me happy. When it came off and he touched my foot which was swollen and discolo...I screamed. His face paled and he knew instantly what it was. I was fortunate that he knew of this disease and believed in it.

RSD. 

They said the best course of action was to try to push through the pain since we caught it so early. Physical therapy. Crutches then a cane.

But I only got worse.

I collapsed at dinner one night in early February and became chained to my bed and a wheelchair. My foot and ankle were a swollen purplish black mass that couldn't be touched, not clothes not sheets and that region could no longer could tell the difference between hot or cold I needed assistance standing, sitting using the bathroom and showering. All sense of self and dignity was gone. I was nothing but a shell for the pain. Death felt as though it would have been kinder; I was being swallowed by this black void.

Luckily we were sent to a pain specialist who started to get me on medications. And he looked into treatment options.
 

It was because of Dr. H and devout belief in me and my pain that I started to make an effort to get better. That I bstarted to believe there was hope for a future where I was not defined by my illness. 

We went through many different medication and I developed myoclonic jerks (involuntary movements). We progressed to a nerve block. But it didn't work, in fact it made it worse. My pain moved all the way up my leg and into my hip. Dr. H decided not to try to other blocks and pushed for me to try a trial for the Neurostimulator, he pushed so that it was done ASAP and I forwent the psych evaluation because my case was so obvious. The stimulator gave me amazing relief, but my pain was still growing. I was now losing my toe nails and the bottom of my feet were starting to shred and bleed. All due to the nerve damage and poor circulation cause by the RSD. I received my first stimulator in may of my senior year.

It was just weeks later that I walked across the stage at my high school graduation. I was still using the wheelchair but it was progress. And despite immense amount of pain I taught myself to walk again. To drive. My stimulator was never turned off and my pain was always still there, but muted compared to before. Soon my pain became my normal and only as it increased did I truly notice it more. But as I moved on so did my disease. It continued to spread and wreck havoc on my body. It spread into my left leg and so my entire lower half was consumed. Then in just a year it would have reached my arms and neck, sending me into the ER screaming in pain with "migraines" like never before. I received another Neurostimulator which would mitigate the pain for my arms and upper body. But I didn't let this stop me. I was in college and planned to graduate. The RSD caused even more issues. It has added to my asthma, dysautonomia, and created adrenal insufficiency from high pain levels constantly (depleting my cortisol). 

It is hard because many people do not understand the problems I face everyday and how I can go from okay to bad in the blink of an eye. I have lost touch with many people because of my pain and need to cancel plans, but it has also brought me so much closer to my friends.

I have good days and bad days. I still take meds everyday and have a wheelchair, walker and cane which I use as needed, but I continue to do what I want and live my life. The disease won't win, not while I can still fight back, even in small measures.

Never  lose sight of the blessings everyday. Your ability to walk. Wear shoes. The clothes you want. Run. Play with kids without pain or having limits. 
 

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