CRPS week - the story of Casey Sullivan

 

Hi! My name is Casey Sullivan. I am 19 years old and I suffer from a rare nerve disorder called Complex Regional Pain Syndrome (CRPS). I was diagnosed at the age 13 and I have had this disorder for the past 6 years. CRPS is defined as a chronic neuro-inflammatory disorder that occurs when the nervous system and the immune system malfunction in response to tissue trauma. This typically develops after some type of injury, surgery, or immobilization. In my case, it did not. I had no previous injury, I have never had surgery or been immobilized, my CRPS just flared and no one knows why. There are hundreds of symptoms associated with CRPS but some of the main ones are increased skin sensitivity, allodynia, cold and burning sensations in the affecting limbs, swelling, temperature and color changes of the skin, and deep aching pain. 

How has your illness affected school?

When I got diagnosed, I was in the eighth grade. My mom and I immediately filed for a 504 within my school district when we understood the extent of my CRPS. A 504 was basically just a form of documentation of my chronic illness and allowed for me to have accommodations in the classroom. If I was hospitalized or in the emergency room for my CRPS I got extensions on deadlines and exams for all my classes. I was able to take short walks around the hallways whenever I felt pain and I knew anxiety was the stressor. I could go to the nurse anytime I want, no questions asked. I was always allowed to have my phone on me in case I needed to call my mom or she needed to call me. That 504 began in junior high and carried on through high school graduation. Now in college, I am part of the disability program at Arizona State University. This allows me transport around campus when I have flares in my legs and I can’t walk.

I get deadline extensions and class flexibility if I am absent. I also get the ability to record classes through a digital recorder if I am in a flare where I can’t use my arms a whole lot. In terms of grades, I – luckily – have stayed consistent with A’s and the occasional B. Although my CRPS has added a new level of stress to my learning, I have been fortunate enough to maintain my good grades and learn my course material to the best of my ability.

What are some of your coping skills?

I have turned to journaling and writing quite a bit more since my diagnosis. When I am in a heavy slump and need to rant, I have a journal for my personal thoughts. I take pages to detail every stressor and pain that I feel in order to try and rid my brain of some of the repercussions of my chronic illness. When I have better days, I turn to fictional writing which belongs to a separate notebook. I keep these isolated from each other because the writings usually deal with contrasting emotions and it is hard sometimes for my brain to handle it all at once when I am in a flare. I also confide in my best friend quite a bit nowadays, and have a few select people that I open up to who I feel as though will understand what I am going through the most (or try their best too).

Lastly, I have comfort hobbies that I turn to on easier days – re-watching TV shows that I love, have dance parties in my room, play my guitar or ukulele – to ease some of the chaos that comes with my CRPS.

Have you ever felt like your illness has defined you?

Absolutely. I have moments where I doubt myself and how far I have come in my treatment. I have setbacks almost daily and when they are the most severe is when I feel like less of a person and more of a patient. I have visual disturbances with my CRPS and can have terrible pressure migraines with left sided vision loss. On two separate occasions this happened while I was driving. I had to try and safely pull over – while having a full-blown panic attack – and sit and wait for someone to come pick me up because I am too scared to drive. In those moments specifically, I feel as though my disease defines me. I sit there, hopeless and terrified, waiting for someone to come save me because I am utterly useless. I hate it.

How have you come to accept your new reality?

I didn’t at first. I was in complete and utter denial for about the first year and a half after my diagnosis. I pushed away a lot of people that I used to hold dear – including my family – and had intense mood swings and severe anger issues. I was depressed for a while and was unsure with how to cope with my new life. CRPS doesn’t go away. It’s not something that can be cured or you can be in remission for and since it is so rare, I had to do research on top of coping and it was extremely overwhelming. The worst part of it all, was once I felt like I had a slight handle on what was going on, I started high school. The stress from that made it all so much worse. I felt utterly alone. I knew I had people to talk to and places to go when I needed help but it seemed like they were all empty promises. I felt isolated from the world around me while it was simultaneously caving in around me. Then – I started to be ok. I wrote and I wrote.

I let go of initial trauma of the diagnosis and I made room for healing. I allowed myself to cry and sit in my emotions before working through them. Eventually, around the age of 17, I had fully come to accept that my world was different. It took me a while, around four years to be exact, but I finally accepted my new reality. I am now much better at evaluating when I have a stressor that affects my disease and how to manage properly. Luckily, I am surrounded by incredibly supportive and loving people that allow me to be independent in my care but are also there whenever I need them.

Lastly, what keeps me motivated is my education. Because of my diagnosis, I have decided to go into the career of nursing. Being in the hospital so often, I know how bad nurses can be and how good they can be. The first time I was hospitalized, I was in Phoenix Children’s Hospital trying to get diagnosed and I was completely terrified. I was shaking the entire time and was crying at various points throughout the day. The nurse that helped eased my anxiety greatly. I knew that day that I wanted to do for others what she did for me – help. I am in my second year of nursing school at Arizona State University and I could not be prouder of my decision.