Happy CRPS Awareness Day!
- Kim Bryan
- Nov 4, 2019
- 3 min read
It's fitting that my body is making me very aware of my CRPS today. I woke up in pain. I hadn't even gotten out of bed yet. But then my big, smiley baby gave me a gummy grin and I felt joy. I held onto that joy to give me strength to get out of bed. I managed to pull on some clean leggings and a wrinkly denim button up. In honor of CRPS and in an effort to support the Color The World Orange movement, I put on my orange Dodger hat. I remembered that I snagged this strangely specific hat for less than $10 on a moms group... and again, felt joy. I held onto that joy as long as I could while making sure the four kids are ready to leave the house on time.
I was already starting to wear down, but I could get to the car and get going. I ran through Starbucks and got a Peppermint White Mocha and put some Christmas tunes on. Joy & joy. It took over two hours to get to my doctor appointment with traffic. Once there, it's a mad rush for the bathroom key and making sure the baby gets changed, too.
This appointment gave me a lot of insight and visualization of what the SCS (spinal cord stimulator) trial process & surgery will look like. (Cool Fact: my right foot temperature was 5° cooler than my left. Pun intended.) The timeline for now looks like a psych eval will be done in November, trial will be done in December, and assuming all goes well, permanent implant in January. Which would mean that 2020 could be the year I get back to being me. That is a giant light at the end of this tunnel and that brought me joy.
As I reflect on the concept of getting back to being me, I realize that I will never go back to the same person I was before. I am different. I am tougher. I am smarter. I am more self aware. And to be real honest with myself, I am scared. I'm scared that the slightest injury can set off a major flare. When I had to test my blood sugars when I was pregnant, my fingers felt broken for days. Someone steps on my toe and I could relapse. The thought of going on a rollercoaster worries me - what if I bump my leg? Bike rides- eek? Cartwheels- I don't think so! Slowpitch softball - nope. All of these things I could do just a few years ago and often! Yes - I am very aware that this line of thinking is dangerous. Worrying is not productive. But my mind goes there sometimes. I need to focus on what I will be able to do if I can cut my pain in half. I can slowly get back to doing more than I am able to do today. That's the hope of the SCS!
^Check out this diagram from
on SCS implants.
So, basically the trial will put the leads in on a Tuesday, but some of the parts will be external. I will be instructed to mess with the settings over those next few days. That Friday, it will be removed. If all goes well, the leads will be "reinstalled" but the battery and everything will be permanently placed inside. The concept sounds so sci fi, but thank God for modern medicine! Thank God I have options. That gives me hope, which gives me joy.
As I sit here in my orange hat, with my holiday coffee, you might wonder how else I might celebrate CRPS awareness day? Well, I will do so by resting, as the drive to and from my doctor's appointnent wore me out. I had the kids take down all the Halloween decorations, and I'm ready for the Christmas decor. I used to wait until after Thanksgiving but Christmastime brings me joy. And finding my joys are how I get through each day. I told the kids that the loophole is that we are "thankful for Christmas". My own creativity made my laugh. Double joy.
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