Swimming Against The Current

Obstacles don’t have to stop you. If you run into a wall, don’t turn around and give up. Figure out how to climb it, go through it, or work around it. I’m truly trying. It’s been about a year since my first hand surgery and I had hope I’d have that one surgery and my hand would be normal. It wasn’t. 7 months later I had another one to tweak what was done and I thought for sure it would be 100% after that one. It wasn’t. 3 months later I had my third surgery and said to myself, “this is the last one, it’s going to work!” It didn’t. Over the last 4 months, my hand has progressively gotten worse. I now have no feeling in my thumb or index finger, all fingers are hyperextending, severe pain in my forearm and a shock like feeling in the top of my hand. There is nothing I want more than to just give up right now. But every time I think that’s what i want to do, I realize that’s not who I am and there is no way I will just be ok with everyone telling me there’s nothing that can be done. I ...

At what point do you give up?  When do you just stop with doctors and accept that this is how you were supposed to be? I think I’ve hit that point. I am tired of the doctors visits, the therapy appointments, the never ending supply of splints (I mean at this point I could open my own medical supply store). I am sick of the laughing and the guessing, the 11 scars I have all over my hand. I’m sick of the looks I get when I can’t grab something with my left hand, and I’m sick of spilling something almost everyday. I’m sick of looking at my beautiful engagement ring and thinking how much better it would look on a normal hand.  I hate that I can’t do Haileys hair and I can’t hold Jim’s hand. I can’t do the dishes, or laundry or grocery shop.  But the thing I hate most is the anxiety it causes me to constantly worry about how to make it better. I’ve come to the realization that maybe it’s just not going to ever be normal again and I’m ok with that. It’s time to move...

Friday was a hard day.  It was the day I had been waiting for since my surgery... to get my cast off and find out what was done to my hand.  My arm was itchy from the cast and I couldn't wait to have relief.  When I got there, the medical assistant cut the cast off and removed my stitches and almost immediately I wanted the cast back on. My arm started to have spasms and the pain was horrible. I got really light headed and nauseous then ended up laying down on the bed.  I started to cry because my arm felt dead, I couldn't lift it and I had no feeling in my thumb.  The doctor came in, laughing, and I started asking questions...What was done? How long will the pain last? Will I get the feeling back in my thumb? The answer to every question was "I don't know." I burst into tears again and went to OT to get a new brace made.  I cried while I walked over there, mostly because of disappointment but also because of pain and the fact that I had to use my other ar...

A few days ago I went in for my 16th surgery. It was my third surgery on my hand. My hand is so screwed up and will never be normal again. The reason it got this bad was because it took a year and a half for someone to realize my DBS was broken. It makes me sick to think about it and to know that if it was fixed right away I wouldn’t be having these problems with my hand. I had a nerve block and at the end of the surgery it wore off, even though the nurses are telling me it worked great. I was screaming in pain because I could feel everything that was happening. I could feel someone grabbing my fingers that they just cut up. It was horrible. They ended up giving me pain medicine and sending me home. Last night I realized I have no feeling in my thumb. I’m hoping this is just part of the healing and I’ll eventually get it back.    The pain is getting a little better each day and I know I’ll be fine but I don’t know if I’ll ever really be able to use my hand normally again....

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 ...

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. Everyon...