I Wouldn’t Change a Single Day That I’ve Lived

Written by Judy Hopkins for the New Jersey Rare Disease Council.

My journey with CRPS, also known as RSD, began 24 years ago, as a result of a surgery in which a nerve was severed and never repaired. CRPS is a chronic neurologic pain disorder that is the most highly misdiagnosed disease in the US. The pain is commonly described as being doused in gasoline and lit on fire.

For many, including myself, diagnosis comes too late and aggressive treatment even later; that the disease process has spread not only throughout the extremities, but into the organs, causing autonomic dysfunction. This makes treatment options limited and remission even less likely. I’m one of the lucky ones who has known remission.

Thirteen years ago I landed in Germany for what would be my second Ketamine coma. After seven days in a coma, I awoke in complete remission and remained that way for the most amazing four months of my life. It was the first time in nine years that I was able to live my life with no pain, allowing me to ride my bike, play basketball and go dancing. Unfortunately, I found a tumor in my knee, requiring immediate surgery, restarting the disease process that has determined my life for 24 years.

Those four months of remission were the greatest of my life and I know that one day I will live without pain and with a fully functioning body once again, but until then, I go for inpatient treatment every three months and take medication to prevent/control flares. This is life with RSD, it’s not always pretty and it’s a disease that makes most people feel isolated from society, friends and even family. I’m fortunate enough to have the most amazing support system, but most do not. 

When I was about to enter my junior year of college as a theatre major in the theatre and dance department at Montclair State University, I became too sick to continue. After spending 14 years bedridden and/or homebound, I am now in a place where I have been able to complete my undergraduate degree in psychology and will be applying to graduate school in the fall to attain my PsyD in clinical psychology.

CRPS is what is referred to as an invisible disease, most sufferers don’t “look sick” and because of that, are doubted by the ones they should be able to rely on most. It is also an orphan disease and therefore, receives no federal funding. This is why my parents and I set out to raise money for a private organization, Reflex Sympathetic Dystrophy Syndrome Association. They provide education to medical professionals, support for the CRPS community and fund research projects to try to find viable treatments for people suffering from this horrendous disease.

My family and I have hosted a walk in Ocean Township annually for the last four years. We have thus far raised more than $80,000. Awareness is so important when it comes to rare diseases, educating those who know nothing about a debilitating disease that has the highest suicide rate of any chronic illness. I have endured two comas, staph infection, sepsis, 27 operations, years of a bedridden life and more hospitalizations than I could count, and I would never have survived it without my family and friends by my side.

I wouldn’t change a single day that I’ve lived, because it has taught me to treasure the amazing days and not to focus on the tough days. Life is never easy, but for some suffering becomes a normal part of our day. I hope that this counsel will reach all those in our state that are suffering in silence and let them know they are not alone and that there are people out there who believe them and want to help them to keep fighting for the life they deserve. Thank you for your consideration.  

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