During my most 2nd recent hospitalization, I spent a total of nine days in the Children’s Hospital of Pittsburgh. This was one of my longest, hardest, and most unsuccessful rounds of treatment. Typically after the 3rd or 4th day of continuous infusions, my feet, toes, and legs will relax and the sensation will return to them. Only this time, the muscle contractures never let up and they haven’t ever since. 37 days later.
I struggled terribly. There were many times when I severely hallucinated due to the medications I was on and there were several complications. I had four tunneled epidural catheters placed and with IV ketamine and epidural lidocaine infusions. I hate the fact that every time I go into the hospital, a serious complication arises. This time, they had to call a condition, which basically means a rapid response team was called to the operating room. They placed my PICC line without sedation for the first time. They had my face draped off to maintain a sterile field. However, they didn’t realize that I was gasping for air and was beet red all over. I was quickly stabilized with oxygen and sent back up to 9A, But once again, I had managed to scare everyone involved.
I have learned to accept that I will probably never see another day without pain and muscle spasms. Over the years, I have comfortably learned to accept and deal with this reality. Although not an ideal situation, I am okay with it.
My new life for the time being requires me to use a wheelchair to get around. It makes living independently impossible and driving out of the question. This has been the most challenging part thus far. I just want my “normal” life back. I want the full use of my legs back and reduced levels of pain. I just want to be to be the best SWAT instructor the ATA has ever seen. I want to be the very best I can be especially for the kids for which I’m expected (and want!) to be a great role model.
For now, I can stay strong and at least act like I am okay with the current circumstances. They can’t last forever, right? After all, what doesn’t kill you makes you stronger!
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!