I am just your average 26 year old or maybe anything but. My days consist of pain meds, physical therapy, psychotherapy, more therapy and a lot of bed rest. Did I mention I spend most of my time in bed? So while I wish I was jetsitting in the Caribbean during spring break or discovering the newest food place in LA its just not my reality. And I am starting to come to terms to with that. I am starting to embrace the beauty in my disability.
I grew up in your average Cali town, with a wonderful childhood filled with fun, music and lots of athletics. When I turned 10 years old I developed CRPS (Complex Regional Pain Syndrome) or RSD (Reflex Sympathetic Dystrophy). I wasn’t actually diagnosed until I was 13 years old and during that time the disease ravaged my body with symptoms of hot and cold, pain that was exorbitant. The pain was so much for my little body and it was not until my foot turned blue and my foot was estimated to have been “broken” over 5o times. My parents always worried they never knew if I was in pain because I was such a happy child but CRPS affected in emotionally as well. After diagnosis, it was bittersweet. My mother was told not to even google the condition because of how grim it is. And some days, well its tough. It has been nicknamed the “suicide disease” and is often referenced by flames and ice and as those are two of the key symptoms. The worst part there is no cure. This is chronic and I will always deal with this. I was and am still learning what that means today.
My treatment began immediately and we saw doctors everywhere around me and tried everything from homeopathic, western, physiotherapy and just about anything and everything you can think of and we are still trying today. That has meant trying new doctors and switching gears and paths every few years. The medical community really has left CRPS a mystery despite the fact that it’s been around since the civil war era.
There were a few years in high school and college where my condition was managed very well and I had assumed I was in remission, when I developed other chronic and autoimmune conditions. It was not until April 23, 2014 when I “relapsed” or had a repeat of severe pain and I then realized my condition likely manifested in a different way during those years rather than really in remission. Whatever the case im fighting again harder than ever. I have leaned this monster hides, and manipulates in every way. Its a beast I will never stop fighting, but I have also accepted that this is part of me and I can no longer compare who I was or what I did when my symptoms were less prevalent. So I’m still working on things to be proud of as a strong disabled woman, but I’m proud of this blog, and I’m proud of inspiring a few people. I’m proud for trying when I feel like I can’t. I’m proud of being vulnerable. I’m even proud of getting out of bed on days where the pain leads me to thoughts of the end. I realize I have do have a lot to be proud of, but it really has been a complete attitude change, for me and everyone around me. Im proud of finding humor in humor-less situations and I’m proud of working through every bitter and shitty moment with partner.
I know I said I wouldn’t compare myself to the before me…..but some other things that are cool and I’m proud of make me remember all that I can accomplish and the drive that I have to succeed. And sometimes I have to remind my self that im capeable of alot. That is calming to me.
I am proud of my BA from Whittier college and I Plan to use my degree for advocacy, specifically disability advocacy . I am have also been a flutist for the past 17 years ish (but I guess I haven’t played much the last few years), but I want to get back to it. I was the youngest flute player to get into the Conejo Valley Youth Orchestra (at 12 just years old), I also won the California Science Award in 7th grade. I know NERD RIGHT!!
I am proud of my continued fight against this disease, and I am a proud disabled woman. I am also gay and have been in a relationship to the most amazing woman for the last 5 years and she holds me together. I couldn’t do any of this without her and we totally agree we met to go on this journey together. I love sponge bob sqaurepants, fun high Socks, medical marijuana is my best friend, I love my comedy, I believe in education for all!, I also suffer from mental health disorders, Im bubbly, Im passionate, I love to help, Lets Laugh
Today, I wouldn’t say I am at all happy or fortunate that this disease has come into my life, but I have leaned more in my short life and in the 15 years of having CRPS than most people will ever learn and for that I might be the most proud.
In 5 years I see myself just as in love as I am now, maybe living abroad or in some really adventurous city. I hope we keep dreaming. And no matter what the future holds, we enjoy, live love laugh and treasure moments with each other. I certainly dont want to wait 5 years to find out what happens next.