MESSAGES
MESSAGES
Don’t Judge a Book by It’s Cover
I hate the faces on a pain scale. As a kid, I could never relate to these pain scales. It told me if I was at an 8, I should be crying. Well… I was at an 8, and I was not crying. In fact, other than the inability to walk, I probably looked like a 3 :) on the pain scale. This reigns true for me even more today. Over the years, I have gained a high pain tolerance and the ability to conceal the feelings stemming from my pain. When you experience pain on a daily basis, you can’t cry every time you hurt, otherwise you would be living in a pool of tears.
My 10 Year Anniversary
Today marks my 10 year anniversary of living with Complex Regional Pain Syndrome. In the past couple of years, it’s been difficult for me to digest that I have been living with CRPS for so long and realizing that I have such a long road ahead of me doesn’t make it any easier. Thinking about the future is quite daunting. It is the unknown, that at times, is scary to say the least. I don’t know if the pain will get better, if the pain will get worse, or if the pain will spread.
Embracing Change
The other day I saw a video of a woman who suffers from CRPS explaining her journey and her feelings towards everything she has experienced. She, like many people who suffer from CRPS, grieve their past life they once had and, in their minds, can no longer get back. It is a painful process. CRPS flips your life upside down, and I think the change is so drastic your life can seem unrecognizable.
My Visit Back to the Cleveland Clinic
In November of 2022, I decided I wanted to give back to the people who gave me so much for CRPS Awareness month. I gave back to the Cleveland Clinic Children’s Hospital (CC) as a thank you for teaching me how to cope with my pain and learn how to walk again. I invited my community to make fleece blankets for the children at the Cleveland Clinic Pain Management and Rehabilitation Program in hopes of giving these kids a sense of comfort and love during such a trying time in their lives.
Trying New Treatments
For a couple of years after learning how to walk and cope with the pain at the Cleveland Clinic, I really didn’t do anything to help with my pain. I didn’t talk about it, try new treatments, or go to therapy. It wasn’t until the end of my junior year in high school that I decided, enough was enough. I was suffering from this debilitating pain and not doing anything about it.
Communicating About CRPS
The first time I met someone else with CRPS was at the Cleveland Clinic. Until then, I felt as if I was the only person in the whole world that had it, but in reality, I was just one of the few children that did. I don’t think I even realized how lonely and unheard I felt until I met my friends at the Cleveland Clinic. They understood my feelings and accepted my pain, which was something people at home couldn't do.
Taking My Life Back
When I was a kid, and I looked towards the future, I didn’t see much. I saw wheelchairs, doctors treatments, and lots of medication. I saw my family having to sacrifice everything, changing their way of life to accommodate what my life was going to be, like building a home that was wheelchair accessible. That view of my future began to change.