My Story

I’ve had back pain for as long as I can remember. Being an active athlete it kind of comes with the territory, I push my body and sometimes that ends in pain. Even when I was little I remember having my back ache so it really isn’t a foreign concept to me or anything that was alarming when it flared up. Coming out of middle school I decided that I wanted to push myself even harder as a student and apply for a rigorous private school that was known for its academics. The challenge was something that at the time I felt I was up for (this was before I got sick) and I was more than excited to see what I could do. 9th grade came and went , though the school was hard I had a solid group of friends and was fairly happy. 10th grade was pretty much the same, I got through just fine up until March. I was extremely stressed out with the workload and often I would be up until late at night trying to get additional homework done. I was exhausted, stressed out, and had a new nagging pain in my back. As I said before, I was and am very used to back pain, but this was different. This pain was constant and I couldn’t get rid of it and it hurt. You know sometimes you have that itch you can’t scratch? Or that no matter how hard you scratch you just can’t get rid of it? Think of it as pain, it’s pain that you can’t get rid of despite every effort to make it stop. I was thrown into physical therapy after a visit to the orthopedic specialist and told that I should be all set in 6 weeks.Riding was very quickly taken away from me and I lost the one thing that had been keeping my head above water. I was scared and desperate to get back to the one thing I loved. I will never forget the morning that I woke up and my hand was frozen. Completely, utterly, frozen. It was stuck in a “claw” position and I had zero feeling in it. I slowly sat up trying to move it. I even began to talk to my hand to try to convince it to move. I was in shock. How does this happen? What’s going on? It was just fine yesterday…. what’s wrong with me? Looking back I now realize that my hand had been slowing down for quite some time, pretty much warning me that something was wrong. We relied heavily on computers in my school and previously I was having a lot of trouble typing and my hand was moving much slower than it should have been. I thought nothing of it until the day that my hand froze. I actually got out of my bed with my frozen hand and tears streaming down my face and gave my best attempt to get ready for school. I then very carefully walked down to the kitchen; still in total shock. Tears were streaming down my face and I begged my mom to help me as soon as I managed to get the words out. Most of this is a blur but my mom called her chiropractor (thinking it was just a pinched nerve in my neck) who quickly opened up an appointment right away for me to be seen. We got there, x-rays were taken, my hands were looked at, and he talked to another doctor at the same practice. They pulled my mom and I into a room and told us “This is something called RSD” and explained it further. Medication was prescribed with names of other doctors who could help me further. Skipping ahead about 2 days after that I was admitted to the hospital for the first time ever- I was in a full on flare and was in unimaginable pain. My story starts here, one of the worst days of my life to this point.

Occupational therapy soon started for my hand where my OT put in all her effort to try to help me regain all function of my hand along with stellate ganglion nerve blocks. If you’ve ever been in a position where you are hurt and thrown into ot or pt you know how painful and torturous it can be. Desensitization was one of my least favorite things. A machine that blew corn kernels onto my hand, different fabrics and textures…. it was far from fun. But two good thing did come out of OT. For one I regained full use of my hand within a few months and full feeling. The second and most important by far is I met my best friend who quickly turned into more of a big sister. Her name is Marybeth and she has been by my side the entire time and we talk nearly every day. I have never been so connected to another person and I can’t imagine where my life would be without her in it. We were both diagnosed with RSD at the time and we would later be both diagnosed with Lyme and the same co-infections! She is such a fighter and actually has a blog of her own that you can check out here. She’s amazing and so very inspiring, her outlook on life is extremely positive and I know it’ll put a smile on your face! I am still in PT dealing with other issues but i’m still going and still fighting to get my body as strong as I possibly can.

A lot happened in between then and now, it has been over two years since I was initially diagnosed and it’s too much to even attempt at summarizing. There have been multiple ER visits, 2 PICC lines, 1 port, 2 stellate ganglion nerve blocks, 4 lumbar sympathetic nerve blocks, too many blood draws and needle sticks to count, multiple MRI’s, 1 brain spect scan, etc. In the beginning of all of this I never thought that 2 years later I would still be here fighting the same monster that I truly started out. Depression sucked me in and had a very firm grasp on me at one point, but I have many people who have surrounded me with love and have helped me get through those tough times. I’m still here fighting, and i’m never going to give up. I’m going to win- this monster is going DOWN.

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