Skip to main content

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. 

Comments

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...

Updates ❤️

It's 430 in the morning and i wake up to Max's whimper over the baby monitor. I get up to go get him and the first thing I notice is that I cant open the door. My left hand is so weak I cant turn the door knob. I try with my right hand even though I have no feeling in it. As the door opens my forearm goes into spasm and causes excrutiating pain. i've had quite a few problems with my arms and hands over the years, but this is the worst it's been. The Botox wasn't working so we tried a new medication called xeomin and my left hand seems to be opening a bit, but it's completely useless because it's so weak. I can't do anything with it. My right arm has been affected by the dystonia, but also I have carpal tunnel so the two of those together also makes doing anything very difficult. Hopefully a DBS adjustment will help soon. After Max was born, I was diagnosed with a pituitary macro prolactinoma. I didn't know what it was at first, but then found ou...

Be the best you that you can be

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...