How CRPS Turned Me into a Crusader
Editor’s Note: Gracie and I met through social media (you will see that she uses social media a lot and very successfully). She has CRPS, but you’ll find she’s much more than just that. We have had a couple of conversations and we at the National Pain Report believe she is a voice you may find interesting and inspiring. She is going to write for us occasionally, starting now.
The Gracie Story (the short version) Like so many CRPS sufferers, it started innocently. Ten years ago, when I was 32 I had a hysterectomy. I started putting on weight – 50 pounds to be exact and that’s a lot of weight, especially when you’re 5-foot-4 inches tall.
“About a year and a half into my new regimen, my left wrist and arm started to hurt – I thought it was a soft tissue injury so I just fought through the pain.”
I decided to do something about it. I was working as an electrical engineer for John Deere in Iowa, so I’m wired to find solutions. I found a personal trainer and pretty soon found out that one thing I really liked to do was kick boxing.
So for the next two and a half years – I kick boxed myself back into shape. About a year and a half into my new regimen, my left wrist and arm started to hurt – I thought it was a soft tissue injury so I just fought through the pain.
I shouldn’t have. For a year I ignored what my body was telling me. I kept boxing. In 2009, I had to have surgery on my left arm. It went well. The surgery and rehab was very painful, but I told my surgeon, I didn’t want any narcotic pain medication – “I’m terrified of them”.
He prescribed me some oxycodone and told me I’d need them for four weeks. I was off them in three days. Then I had the surgery on the right hand.
When the anesthesiologist gave me the shot before the surgery – it felt different and not in a good way. I feared then something was wrong. I would have no idea how wrong. After the surgery, rather than 3 days, I took the oxycodone for 5 weeks. And I wasn’t getting better.
The pain was indescribable (unless you allow cursing). And more importantly, I wasn’t getting any answers.
When an occupational therapist first uttered the words, “complex regional pain syndrome”, I didn’t know what it was, but I was determined to find out. I needed to learn everything about it, because I was determined to beat it.
You don’t beat CRPS, I’ve learned. But you can work to contain it. And in my journey, which I’ll be sharing with you in the coming weeks, something else happened. When it started I started looking for information and writing a journal about what I was finding. If you have CRPS or any other chronic pain malady, you know that you often feel alone. It is terrible.
I started to share information with people that I began to find on social media. I really began to see this as a calling as I realized several years ago that my advice was gaining momentum among other people – mostly who live here in the Midwest – so I went from information gatherer and sharer (is that word?) to a full throated advocate, which is where I am today.
There are probably 75 different Facebook communities that I’m actively engaged in from CRPS (of course) to treatment and resistant mood disorders, to chronic pain maladies to depression. I’m a bit of a missionary, actively sharing information, encouraging people to talk and communicate with each other and with their doctors.
“Help them help you”, I like to say. Well enough of me for now. I just wanted to introduce myself to you. (By the way, on Facebook I’m known as Gracie Gean) Talk with you again very soon. In the meantime, let us know about your CRPS or other chronic pain experiences!
Editor’s Note: Gracie will be writing on some specific topics from her experiences and ideas that come from her colleagues on Facebook and maybe from you!