A Survivor's Challenge
Can you believe it?! It's that time again, time for the RIC sky rise challenge and I am getting ready! This will be my fourth year as captain of team Corona light and I am hoping to make it the best year yet! I realize many of you have supported me since the beginning and for that I am eternally grateful and I don't want to abuse that generosity so I understand if you want to just be my cheerleader in this event, I need that just as much! However, if you can, I'd really appreciate any support! The new RIC hospital is close to being completed and we are all extremely excited for what the future holds!!
How am I doing these days? I am thrilled to be able to give you a glowing report! This has been an amazing year, as I finally got a service dog after several years on a waiting list. He has changed my life in so many ways and he has truly given me back my independence! If you haven't met him yet, you must! He is absolutely the sweetest most lovable dog, and smarter than even you or I. Fortunately, I have not had to spend as much time at RIC lately and while I miss them, my life has been headed in so many exciting new directions!
Take a few minutes and watch this video, put together by the RIC life center and with a little input from me as well! It is very well done and just goes to show some of the wonderful attributes of this hospital. I also posted links to videos from previous years...
2016 RIC video
This is no doubt an event that hits close to home. In August of 2013, I was discharged from RIC after having been inpatient for a month and a half following an invasive spinal surgery. This was not my first surgery though, for twice in 2005 I was a patient at RIC after undergoing a series of surgeries on my spinal cord.
Given all of the challenges that I have had to deal with, combined with the struggles I still face every day, I consider myself a survivor. I have been in a wheelchair since I left RIC back in 2005, but I also suffer with severe chronic pain centered around the area of my upper back, the location of the majority of my spinal surgeries. In addition, I have lost virtually all sensation from my neck down i.e. hot/cold , texture, and pain. Further, following the number of surgeries on my spinal cord that I underwent between 2003 and 2006, it was discovered that I had developed severe central sleep apnea as well as narcolepsy. Life has certainly had its challenges, but I am a survivor!
Thanks to the RIC, when I was 24 years old, I went to the University of Illinois at Urbana Champaign for two years, living on my own with assistants. I would never have thought that it was possible, but they showed me that although I had many new challenges to overcome, that doesn't mean that it can't be done. RIC is the place where miracles happen every day. I have witnessed it but, more importantly, I have experienced it, as anyone who knows me can attest to. They need our help!
"Survivor" Destiny's Child
I'm a survivor
I'm not gonna' give up
I'm not gonna' ’stop
I'm gonna' work harder
I'm a survivor
I'm gonna make it
I will survive
Keep on survivin'
"To raise funds to support the standard of care, groundbreaking research, and quality of life programs that ...have kept RIC as the #1 rehabilitation hospital in the nation for 23 years running."
I am 29 and was born with a rare metabolic bone disease called Craniometaphyseal Dysplasia (CMD). This disease causes the bones of the skull to grow thicker than normal. When I was born, the bony overgrowth created compression on the nerves for hearing, causing hearing loss for which I wear hearing aids in both ears. The excess bone also compressed the nerve that controls the muscles of the left side of my face, causing Bell's palsy (paralysis) on this side of my face. My bone disease is so rare that very little is known about it or how it progresses. However, this disease is progressive, meaning it continues to lay down bone even after it is supposed to.
My problems began when I was 11. MRI scans revealed I had developed hydrocephalus and Chiari I Malformation, which would require immediate surgery. On January 2 of 1998, I had a posterior fossa decompression. My problems did not go away, and in December of 1999, I had a ventricular shunt placed. Despite the headaches, I was managing to lead a fairly normal teenage life, playing travel softball, making the school honor roll, etc.
During my sophomore year of high school, a lumbar shunt and, later, a subarachnoid shunt were surgically placed. At age 17, in the midst of my operations, an MRI revealed that I had developed Syringomyelia, and it is THIS condition that has had devastating effects on my life, taking so much away from me and turning my life upside down.
I began with a syrinx near the top of my spinal cord, but each time the doctors went in to drain the syrinx and remove the pressure on the nerves at that level, another syrinx would form below it and the doctors would go in again. It went on like this, until the syrinx had made its way down the spinal cord, permanently damaging nerves at virtually every level. In 2005, I was hospitalized twice at RIC, among the various surgeries.
After all the surgeries were done, which numbered over 30 (we lost count!) and it looked like a syrinx was under control, I suffered from chronic pain in my upper back between the shoulder blades. I have also lost virtually all sensation from my neck down i.e. hot/cold , texture, and pain.
In the fall of 2008, while attending a group therapy class at RIC for young adults with disabilities, I was introduced to the wealth of disability resources available at the University of Illinois at Urbana-Champaign. Not long after, I was accepted into the freshman class of 2009! I would live at the special dorm for students with disabilities, majoring in animal sciences ( I wanted to work with service animals)
After my 1st semester, it was discovered that I had narcolepsy coupled with severe central sleep apnea in addition to the chronic pain. The situation got so bad that when I came home for spring break that year, I did not go back to finish out the semester. While I did return in the fall of what would have been my sophomore year, I was unable to finish out the year, due to chronic pain.
In the fall of 2011, I was a patient in RIC's Center for Pain Management Chronic pain rehab program.
On June 18, 2013, I had to have surgery to replace my subarachnoid shunt after which I went straight into a two month stay at RIC until August 12.
*purple is kinda my favorite color...:)
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