Skip to main content

Done

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 on and accept this life with dystonia.  

I saw my surgeon today. He shook his head in disbelief and said its getting worse. But he also said it “looks good”. I don’t think he really knows what to think. I got yet another splint and was told to continue therapy for 6 more weeks then go back for a follow up. All my fingers are hyper extending still and my index finger is in its own world. The splints hurt so most of the time I can’t wear them. My dystonia fights against the hard material and after the last surgery, my fingers want to curl again. I know my hand won’t be perfect but I just want to be able to use it!! 

Comments

Post a Comment

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 ...
13 comments
Read more

Pregnant With Dystonia

Well, hello there and welcome to my blog. These last couple months have been stressful, exciting, painful, happy and scary. I'm working on keeping these feelings positive! A couple of years ago I was diagnosed with Dystonia. My left hand has curled into a fist and I can no longer use my fingers. My wrist is permanantly stuck in a spasm and I now wear a brace 24/7. I get daily spasms in my feet and sometimes its hard to walk because I don't know when it is going to happen. I have muscle spasms in my back quite often and occassionally in my neck and jaw. On top of the dystonia, I have multi-directional instability in both of my shoulders, causing them to dislocate very frequently. In February, 2010 I took a home pregnancy test and it was positive! It was the greatest thing that has ever happened to me. Although my boyfriend and I were a little nervous, we smiled and started to plan our life together with our baby that was on the way. Since then, I haven't been able ...
8 comments
Read more

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...
Post a Comment
Read more