2020 was a tough year for me & it has little to do with the pandemic.
It started with a big decision- I chose to stop the clinical trial I was on for FOP. It had nothing to do with the trial itself, but a personal choice. A choice that I went back and forth on for over a year– I talked to friends, family, medical professionals, & basically anyone that would listen. My last dose was December 31st, 2019.
I was still in the middle of my biggest/most painful flare up ever, but I thought I was almost over it (oh boy was I mistaken). But I was starting fresh in 2020.
January & February were pretty steady. We went to Ohio for the graduation of our second CCI puppy (Congratulations Ethan!) I went to Hot Springs, AR for my boyfriend’s sisters’ wedding. I was fighting the flare in my hamstring. It fought back, but I thought I was in control- I just couldn’t get the swelling to go away. I tried lymphedema therapy and my body fought back- this time it won.
February 29- March 1 was the most pain I have EVER been in. I was up for over 24 hours straight (literally stood every hour & I have my iWatch to prove it). I couldn’t lay down, I couldn’t sleep (I tried hefty doses of melatonin & even tried Xanax (calm down I have a prescription)) — nothing helped the pain, I couldn’t find a comfortable position (couldn’t stand or sit or lay down). I think you get the point, but I was absolutely MISRABLE. Sleeping on the couch made me even crankier and even more swollen. Basically, I don’t know how I survived, but I’m super thankful for my parents & Billy who put up with me because I couldn’t even put up with myself. While I was fighting with my left leg (still think it’d be less painful to cut off), the pandemic began. And I’d like to raise my middle finger for the pandemic for taking away my biggest distraction- Cardinals Baseball & Blues Hockey. Thankfully Netflix & Kindle Unlimited stepped up & provided a much needed distraction.
We finally started to see light at the end of the tunnel with no lasting damage and we were ecstatic– but then my world imploded.
On April 16th I decided to be a stubborn & got from a chair by myself, but instead of standing, I fell– right on my hands and knees. I lost movement in my left knee (my good leg). I lost my ability to freely walk & stand up straight. I lost most of my independence.
I can no longer walk without a walker (& even with that, I can’t walk long or far). I lost the ability to go to the bathroom. I can’t get up on my own. I can’t make my own meals (which is funny considering I don’t cook, but now I can’t even get my own snacks/ food). I can’t turn over (or move at all) in bed. I can only sit in my wheelchair, on a couch, or my very specific walker seat. I can’t get in a car (only the back seat of my van). I can’t do any steps (of any kind- even if it’s less than 6 inches).
Life as I knew it was literally over. I had to adapt in literally every aspect of my life. As you can imagine- this has been extremely challenging.
But I’m learning to accept my new life. It’s been rocky and hard as hell. I’ve lost my shit more times than I can count, I’ve lashed out at my support, but I’m doing my best (& my best is good enough).
I’m starching-denting-breaking my way into 2021 thanks to my buddy Russell the Wheelchair.
2020 hasn’t been my year & I’m excited to put it behind me.
BUT- it hasn’t been all bad.
- In July I learned I’m going to be an Auntie & I seriously cannot wait (hurry up April 2021!).
- I started to get leads with being an Instagram Influencer & I can’t wait to see where that journey takes me!
- I paid off my Credit Cards which was a major goal for 2020
- I read SIXITY EIGHT (yes,6-8) books (That was almost triple my goal)
Please 2021, be kinder to me- I’m ready for you.
Carli Lyn 
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