In 2013, I was just wrapping up an eleven day stay in the pediatric intensive care unit after a procedure went seriously awry. I had been on the waiting list to attend a program at a pediatric rehabilitation facility near my home for several months. I'd been battling Complex Regional Pain Syndrome for 8 months at that point and non-invasive therapies had failed. I could do inpatient intravenous treatments with two epidurals, but that was really hard on my body.
One of the intensivists in the ICU had heard about all the problems getting me into the rehab program, but one of his "buddies" was an attending at that hospital. He called him up and within hours, they had a bed for me.
I was transferred from one hospital to the other to start an aggressive inpatient regimen of physical therapy, occupational therapy, aqua therapy, psychology, and group therapy 8-9 hours a day. In the evenings, we had a home exercise program to do for an hour each night. It was a grueling program, physically, mentally, and emotionally. The mindset behind this program was to reduce the pain and improve my function by forcing me to exercise through the pain.
Now, this pain isn't just a small ache. This was a full body cold burning sensation with just about every other pain sensation possible on top of that. Unlike some, I was able to walk and do most activities of daily living independently. I was also really physically fit from doing 2 hours of outpatient physical therapy every other day and 1 hour of home exercise on the off days. Should have made the program easier, right? Wrong!
I was poorly cared for while in the program and it took its toll on me. I never had any problems with the psychologist and the occupational therapist, but my physical therapist was brutal toward me. Due to a complication, my foot and ankle would go into a spasm and lock turned in. The PT would turn the electrical stimulation on at its maximum strength for 45 minutes while she tried to forced my foot flat. The intensity of the stimulation was so high that there would be burns where the pads were placed. Eventually she would just give up and make me run, jump, lunge, etc on the side of my foot/ankle. I ended up just falling to the floor over and over again frequently hitting my head, straining my neck, and getting several cuts, scrapes, and bruises while she stared at me from across the room with a disapproving look, making no attempt to prevent me from being hurt. I didn't take an pain medication, but some of the muscle relaxers I was on to stop the spasms from happening were abruptly discontinued and I had to withdraw from the medications, some of which were notoriously dangerous if you stopped then cold turkey. It was a bad experience overall.
One day, I was sitting in my room watching TV eating lunch before my afternoon sessions. I heard a small knock at the door. When I turned my head, I saw a small man with a cleaning trolley. "Can I come in and clean?", the custodian asked. "Come in", I gestured. He made his way across my room slowly, the cleaning cart in tow. For a few minutes, he worked silently as I ate. After a while, he broke the silence. I don't remember what we talked about initially, but I'll never forget the second part of the conversation. "So why are you here?", he asked. "I'm doing the pain rehabilitation program. I have CRPS.", I replied. After explaining CRPS briefly, he remarked how challenging it must be. I shrugged and stared at the floor. "I'm kind of getting used to it. I've never really questioned why I got this or why me." I will never forget his response. He said, "Well young lady, you are absolutely right. The question is not why you, it's why not you?". I looked at him kind of confused. "You seem so intelligent, well spoken, and beautiful. If someone has to have this, if someone has to suffer through this, it's going to be the strongest people. The average people would collapse under the weight of the condition and all that it entails.", he continued. By that time, I started to see his point. I continued pondering this idea all the way down to my physical therapy appointments, while swimming laps during aqua therapy, and while lying in bed that night. Although the meaning of that conversation has changed a little bit over the years, the overall message is still the same.
Someone has to have the condition, so why not me?
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!