Skip to main content

Is this what a storm feels like?

A couple weeks ago, as I had mentioned before, my hand curled back in.  I tried to contact my doctor several times to help not only my hand but the very painful back spasms as well.  I never heard from him, which was unusual because he always emails me right back!  I finally called the office again and they told me he was on vacation for two weeks and another neurologist was seeing his patients.  It took a few days to finally talk to this doctor, who agreed to see me last Friday.  I was having a lot of facial twitching and my hand was still curled in.  She decided to change my settings on my DBS a little but didn't want to mess with it too much since she wasn't my regular doctor.  She changed the settings and almost immediately after, my whole body went into spasm.  My foot curled in, my neck pulled back, face still twitching, hand and wrist curled and back twisting.  I have experienced this only a few times before and never at the doctors but I guess its better to happen there then anywhere else!
She put the settings back to where they were when I had gotten there and the spasms stayed the same.  She had me lay down to try to relax but nothing seemed to make it better.  She sent me home and told me that my doctor would contact me to see me this week.  I was all alone so it was kind of scary walking out to my car like that then driving home.  But, I made it. 
My doctor returned to the office this past Monday and I didnt hear from him by Wednesday, so I emailed him to see if he had heard what happened.  He said he had and agreed to see me on Thursday (yesterday).  This time, my mom came with me!  He changed the settings a little and my hand opened a little.  He had me wait an hour then go back to see him so he could do more changes.  I went back and he changed them a little more, and my hand opened a little more.  This time, as my hand opened my foot curled in.  He had me wait another hour and when I went back, he decided he wouldnt change anything else.  My hand is about half way opened now but now I have to walk on the side of my foot.  Im not sure which is worse, not being able to use my hand or my foot.  I am beginning to get blisters on the side of my foot and my baby toe.  The doctor wants to see me again next week, so hopefully everything will be better soon!!  Still praying and still fighting for a cure!  Who's going to help me win this fight????
Dont forget, the Dystance4Dystonia walk is only ONE week from tomorrow!!  Thanks for your support.

Comments

Post a Comment

Popular posts from this blog

Dystonia awareness

Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...
Post a Comment
Read more

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

Why be normal?

For the last 17 years my hand has slowly been getting destroyed. Its been closed, open, dislocated fingers, and eventually everything about it was deformed. My first hand treatment was casting my fingers open but with dystonia this usually doesnt work. It was one of the worst pains I ever experienced and I had to go back and have the cast cut off that night. I had my first hand surgery in 2019 to "fix" some of the damage that was done from my dystonia. Little did I know that would turn into many more surgeries trying to relieve my discomfort and my anxiety of having a deformed hand. I wanted it to look normal so bad. I was so embarrased by how my fingers looked that I always had my hand in a sweatshirt pocket so I could hide it from the world. I never mind sharing my story to spread awareness but how embarrasing is it to drop groceries everytime you try to shop, or struggle to pick your toddler up. Over the last couple years I started seeing a new hand doctor that my mother...
Post a Comment
Read more