Swimming Against The Current

It has been almost 11 months since my DBS surgery. I’m learning and trying to be patient and positive. I have had two hand surgeries in the last 6 months and it’s very hard to do every day tasks. For the majority of the time, I am almost symptom free but I have been having some problems with my right side. My right foot and my right hand have both been stuck a couple times. I have a lot of back pain and last night had a pretty scary “attack” in the middle of the night. My back went into spasm, my right arm got very tight and I was having a hard time breathing. Jim got me through it and I managed to go to sleep and wake up with just a little stiffness and pain in my back. I don’t know if my dbs settings need to be changed or if this time it’s just not working as well. It really scares me. I have an appointment in Albany in January so I am hoping to change the settings a little and see some improvement. I still will always recommend DBS to everyone I know with dystonia. I’ve had some pr

Staying positive through everything has been the hardest part of this journey. It’s been harder than the pain, the trips to Boston and Albany, the surgeries, the appointments and the therapies. When you deal with something for so long, you start to change the way you think. Being negative was making me depressed and anxious because I kept having thoughts I was never going to have my hand back.  At the end of May I had surgery to fix all the tendons that were damaged from being contracted for so long. I was expecting an immediate fix and it didn’t happen. It’s been 6 weeks since that surgery and I still can’t bend my fingers. I got the pins out this morning and was told my hand is in spasm in the opposite direction now, making my fingers hyperextended. I now have two different kinds of braces to wear to prevent them from hyperextending and many exercises to do several times a day. Lately I’ve been wondering if my hand will ever be normal again and some days I question whether or not

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 to

Leading up to my surgery, I had some of the worst dreams that I didn’t want to share until it was over. Every day, I thought something was going to prevent me from having this surgery done. I had this sick feeling deep in my stomach that something would go wrong. And when nothing happened in the days leading me to surgery, I thought for sure something was going to happen in the OR. Last Sunday night, at the hotel in Albany, I don’t think I slept more than 20 minutes. I got up before my alarm, took a hot bath and prepared myself for this. I felt this feeling of excitement that the day was finally here but also a feeling of panic.  I met with my surgeon and two other surgeons helping her, a few nurses, and 2 or 3 anesthesiologists. Each one had different information that I tried to absorb but thinking back now I don’t think I understood a single thing any of them said. They finally were ready to bring me into the OR and I couldn’t have anything to relax me because it may interfere w

2018 was the worst year I’ve had when it comes to my dystonia but the best year I’ve had when it comes to happiness. I learned to never give up and to always fight for what you want and what you need. Although I’m still trying to get better at standing up for myself, I’ve improved greatly over the last year. My doctors in Boston stopped helping me which pushed me to find answers somewhere else. Eventually I ended up back with my surgeon in Albany, who has always come through and helped me overcome every struggle I’ve ever had with my dystonia. Once again, she’s helping me and next week I will have my DBS redone. The stress is killing me trying to find help with the kids, but I’m so thankful for my family and friends for always helping me. In times like this, I want to give up and just cancel my surgery because finding help is very difficult, but I cannot be the mother I need to be in the condition I’m in and getting help will, in the long run, help my children as well. One of the big