Wednesday, July 10, 2013

This is all so important to me.  CRPS stands for Complex Regional Pain Syndrome and is also known as RSD (Reflex Sympathetic Dystrophy).  It is a dysfunction of the nervous system causing extreme chronic pain and severe hypersensitivity.  I've made it my goal to spread the word about this rare disease that has changed my life.  There is still no cure for CRPS and I would give anything for there to be one.  To donate to research you can visit  Now let me share my story of how it changed my life... 

On October 25, 2011 and I was volunteering at Extreme Home Makeover in my hometown of Joplin, Missouri.  It was 11 PM and I had school the next day so we were walking back to the car to go home and I take step upon my left foot and as soon as my foot touched the ground this tremendous pain began in my foot and ankle.  I felt like I was stepping on knives all the way back to the car.  My mom was worried because we had no idea what was going on because I didn't roll my ankle, I didn't step into a hole, so what could it be?  I got home and naturally my parents tell me to put ice on it and I just screamed when they put it on me.  I did the same when I tried to put sheets on myself to go to sleep.  How could something so light cause me so much pain?
The next day I went to the chiropractor because that's what would always help me after sports injuries from track and cross country.  He told me that my heel was dislocated and tried to put it back into place.  Needless to say, IT WAS NOT DISLOCATED!!
Skip forward a month and I finally get in contact with the kindest and wisest doctor who finally did the correct testing (which was excruciating) and said that I am afraid we may be dealing with RSD/CRPS and sent me to a specialist in St. Louis at Barnes Jewish Hospital. 
When I was there I was officially diagnosed and over the next couple of months I went at least once a week to get either a Lower Lumbar Sympathetic Block or an Epidural. 
Sadly,  after an Epidural in January 2012 my legs stayed numb for 3 days and when I finally regained feeling my CRPS had spread all the way up from my toes to my hip in my left leg.
We start the process for me to get a Spinal Cord Stimulator to help my pain and by May I had the trial put in and it worked fabulously.  The surgery was scheduled for Friday July 13, 2012 and to me it seemed like eternity waiting for it.  3 days prior to the implant date, it spread into my abdomen and my doctor, who I love dearly, just told me that it wouldn't work quite the same and he wouldn't recommend doing it anymore.  He referred me onto Boston Children's Hospital to go to the Mayo Family Pediatric Pain Rehabilitation Center there.  
We went the next week for my initial evaluation and they accepted me into the program (which not many people make it in to).  So I went home for a week and then me and my momma flew back and were there for 6 weeks.  I learned how to walk again and many more things that I am very grateful for.  I was at the center 8 hours a day, 5 days a week, doing intensive physical therapy, occupational therapy and psychological therapy to deal with the pain.
I started school when I got home and I attended as much as I could for about a month, and I was doing really well!  Flare ups were regular occurrences but I was able to cope as long as I had my heating pads with me!  :)
On September 30, 2012 it spread full body.  I felt like my life was over.  How could I go on like this?  How was I supposed to make myself get out of bed if every single thing I did or touched anywhere on my body would cause me extra pain on top of my baseline pain?!  I still would try to go to school but things would happen that I honestly couldn't deal with without causing myself insurmountable amounts of anxiety and my doctor ordered me to go on homebound schooling because my anxiety was making my CRPS worse again (funny how to nervous system sets each other off like that).
By October the CRPS had progressed to the final stage and began making my muscles trigger unexpectedly and it was strong enough to pull my joints out of place.  
In December 2012 I was very blessed to be guided to a doctor near home just about a two hour drive to Tulsa, Oklahoma and he helped me tremendously.  God works through him, no doubt.  He gives all the glory to God and it is so wonderful to see him 1/2 times a week.  
So that is my story in a nut shell.

Now a behind the scenes!

Even with quite sad concepts we still have laughs!


  1. im so sorry u have 2 go thru this. wow :(