Rough Patch

I’m having a hard time accepting what is happening. I grew up loving sports. Softball and cheerleading was my life. I remember how upsetting it was when my shoulders started to dislocate and I had to miss so many days of practices, games and competitions. It was heartbreaking but I knew I’d get through it... and I did. I had dreams of playing catch with my kids and teaching them how to play ball. When my hand first started to curl in, I didn’t think too much of it and I kept thinking that if I just keep fighting, it will open. And it did. After my first dbs fixed all my symptoms it was easy to stay positive. I had ups and downs, good days and bad but for the most part my dystonia was gone for about 7 years. 

This time it’s different. When I had my dbs redone in January, I was very excited. My right side improved within a week and my left side did too, just not 100%. I knew it was helping my hand because it wasn’t as tight but I couldn’t straighten my fingers all the way. Everyone told me to give it time but it felt like I gave it my whole life and now my hand was destroyed. It’s devastating to have a little girl and not be able to braid her hair, or play catch your little boy, or teach your daughter how to pitch a softball. These little things that people tell me are “no big deal” are breaking me down every day. 

A couple months ago I found a hand doctor who was willing to help me. He told me he would lengthen my tendons and there would be “no recovery” and I’d be using my hand in no time. It sounded great so I agreed and two weeks ago went in for surgery. The doctor never came out and talked to me after so I didn’t know exactly what he did until yesterday. 

I went to Boston and they cut my cast off. It was one of the scariest moments I’ve ever had. There was gauze stuck to my fingers and my hand felt so tight. Once they pulled the cast off they brought me in for X-rays and that’s when it hit me. I got weak, sweaty and dizzy and nearly passed out. The thing is, it didn’t hurt. It was like a shock. I had this sick feeling that I made a mistake and I’ll never be able to bend my fingers again. I have incisions on the tops of two of my fingers and pins in the ends of them, an incision on my wrist and I’m unable to bend three of my fingers. I have to stretch them daily and I’ll get the pins out in four weeks. I’m trying really hard to be strong and positive but it’s killing me. This is the hardest thing I’ve ever had to go through, I feel like I’ve lost a piece of me. I know it sounds ridiculous, and many people will say “at least their straight” but they feel fake. My fingers feel like they are still bent but they are stuck straight open and every time I try to bend them it feels like a tendon is going to rip through my wrist. 

I hope next year at this time I can play softball with my kids because they love the game and it is so sad to me I can’t play with them. I hope someday I can braid Haileys hair and button my own pants (haha). 

Thanks for listening to my obnoxious complaining, just having a rough time. Hopefully my next post will be more positive and uplifting.