Skip to main content

Not the news I hoped for

On Wednesday I spent six hours driving in the rain. I spent one hour sitting in a waiting room and I spent 20 minutes with my doctor. In that twenty minutes I went through a roller coaster of emotions as I was told this might not work again. The impedance numbers on my DBS are off, once again, indicating a possible break in the wire. This is exactly what I just had fixed. I don’t know what’s going on or what to do. The pain in my back is so intense I can’t sleep. I wake up a million times a night then I’m so exhausted during the day I can barely keep my eyes open. My hands are closed so tight they throb and swell and doing simple every day tasks are nearly impossible. 
When I had my dbs, seven years ago, I had high hopes it would change my life. Shortly after that surgery, it did. My symptoms were under control for seven whole years. I don’t know what changed but recently it’s not working and it’s beyond frustrating. I’ve had the settings changed more times than I can count, sometimes it works and sometimes it doesn’t.
I honestly don’t know what my next steps are. I’m in the process of contacting my surgeon and getting back in touch with my neurologist to find out what to do. I may need the settings to be changed again, I may need the DBS redone, I may need a new stimulator. Only time will tell. 
I am still planning the dystance 4 Dystonia walk, which will take place on June 2nd in Nashua, NH. The time has been changed to 10am, with registration beginning at 9. We only have about 2 weeks left before we have to order shirts so registering online ahead of time is best so you can make sure you get a shirt. We are also still looking for sponsors, so please contact me if you know of anyone interested. 

Thank you for your love and support. 

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

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

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