I Am Grateful for What I Have, but Sad About What I Lost

Written by April C. for the RSDSA blog.

In July of 2020, my son, who was 10 at the time, and myself were riding a four-wheeler in a remote area. The ATV went off the road and I did not want to tell my husband what happened. I attempted to get it out of the ditch. I was not able to, and the four-wheeler went up on its back two wheels and fell on top of me. In this moment it was one of the scariest times of my life. I thought my life was over and my son was going to witness it.

My brave son called 911 and then pushed the four-wheeler off me, despite my objections. The accident resulted in a head injury which I was later diagnosed with moderate Major Neurocognitive Disorder. I went back to a sixth grade education and my short and long term memory has been affected. I also have speech issues. I misplace words and sometimes what comes out of my mouth is not what I really want to say. I also had a hand injury, which ended up being my first limb that was affected with CRPS.

I have mental health issues Major Depressive Disorder, Anxiety, Adjustment Disorder, and PTSD. Life has not been easy. My journey is no different than anyone else’s, chasing a diagnosis and KNOWING something is wrong. I will never forget when I received my CRPS diagnosis… the neurologist looked at me and said, “do not go home and look this up. What you are going to read is bad.’” You can guess that I did not even make it to the car, and I knew all about CRPS.

The emotional toll of the accident, my head injury, and now CRPS was all too much. At one point I was going to kill myself as I did not want to live this way. I knew how I was going to do it and I came close. However, that boy saved me again and I decided to fight for him.  

I started my CRPS journey just like everyone else: pain management, tons of meds (21 pills a day), and nerve blocks. I stopped at the spinal cord stimulator after polling our group on Facebook as I knew there was a 50% chance it would work. I was not willing to have this in my back and I was going to figure this out myself. My mom insisted that I go to the Cleveland Clinic even though I knew it was going to be the same thing. As I suspected, they recommended a spinal cord stimulator and ketamine. Ketamine was not an option for me because the out-of-pocket cost was not in my financial reach. I also worried about my depression because it was bad and whether I would be the one that had a terrible experience. I then joined every support group on Facebook and spent many weeks reading other people’s experiences and trying to figure out how to survive.

Most of it was depressing, then one day there was this man who was once in a wheelchair and he was working out and functioning like an everyday person. Seeing him get out of the chair and what he had accomplished was inspiring. I then started seeking out those who were like him (there were only a few, but they were there!). They all reported a good life through diet, exercise, therapy (both physical and mental), and alternative treatments. I got myself an OT and a therapist for my head and quit all medication. I remember being in tears begging my family doctor to take over my care. He looked at me and said, “April, I know nothing about this illness. I am not the doctor to treat you. You need an expert.” I then told him he didn’t need to know anything and that I knew enough, and he can help me. To this day, he supports me and my journey with CRPS. He has been a blessing. 

I went through three mental health therapists before I found one. She told me recently that the first time I was in her office I was so guarded she thought I would never come back. In the beginning we focused on my illness. One of my first “assignments” was listening to Louise Hay’s “Heal Your Body” for thirty days. I could listen to it even when I was doing something as it was important for the subconscious to hear it. When I first started, it would bring me to tears. I lived a very trauma filled life, some self-imposed and some not. I continue to work with her to this day I have learned how to mentally manage my illness, love myself, get out of a very emotionally abusive marriage, and everything in between. There is also a book called “Unlearn Your Pain” and it discusses how if you heal your emotional trauma, you will heal your pain. This was some intense work, but I did it and I am glad I did it. My mental health has become more stable, and I now have the coping mechanisms to deal with my pain. 

I found the best PT a CRPS patient can ask for; she heard me and read me quickly. She knew I was a pusher (my desperation to feel better consumed me) and that at times my “push” harms my body. Remember that balance is key! She was just as invested in learning about my illness as I am, and she changed my physical health and how I approach it. She also got me back in the gym (nothing like the guy I saw a while back!), but just minimal activity combined with PT. I have been with her for four years now and we continue to track my progress. She has had three PT students with her and one did his paper about me. I feel lucky to have helped shape three future PT’s and teach them about this illness.

A year into my diagnosis I was at my son’s baseball game. We were in a dome and the floor was wet, I slipped, fell and sprained my ankle. Later that day, we had plans to take our son to his first Tiger’s game. I knew what my sprain meant: CRPS in my foot. I cried the entire drive. My ex-husband told me I was making a bigger deal of it, and I allowed him to push me that day. He was only concerned about taking our son to a game and for the same reason I did not want to call him to get the four-wheeler out of the ditch, I walked on my foot. I also did not seek treatment soon enough. The pressure I was feeling at home to “perform” was making me anxious and all I wanted to do was to make him happy. I never want to be a burden on anyone. I regret going to that game and not having a voice to speak up. My foot will forever be a constant reminder of this.

I live in a small town in Michigan and by luck I have found the most incredible mental health therapist, PT, and doctor. They have all been invested in me and they listen. I am beyond grateful. My support outside of the medical field has also helped me. The loneliness of this illness can be self-defeating. I am grateful I have friends and family who have encouraged me and supported me throughout my journey. I also have my forever hero, my son. None of this would be possible without him. I am grateful for what I have, but sad about what I lost. I continue every day to fight (some days are a lot better than others) but somehow, I keep making it through. I have learned to put on a “face” for the world and I’m good at masking my illness.

CRPS is no cake walk for any of us and there is no “right” answer for treatment. I believe each one of us has to find their own way. My way might not work for you. My personal goal is to find the answer to help us live a better quality of life. I am determined. I also want my brain donated to CRPS research. I hope that with my determination I can live a better quality of life and help others like me. For me that means a steady pain level of 6/7, PT/mental health therapy, and doing my best to keep my mind from going into a deep depression (this one is hard to master). In July, it will be four years since the accident, and I can look back and say I have made tremendous progress. Life is NOT easy, but I try and remain as positive as someone with CRPS can be and for the days I cannot muster up the strength, I look at my son, and know he is worth it all.

Reach out to April on Twitter/X via @aprilcowell19.

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