Swimming Against The Current

I wake up in the morning, groggy from not having enough sleep lately and go to reach for the door that won't open. For years I've been using my left hand to do things like open door knobs, do my hair, carry bags, cook etc. It was hard to get used to doing things when my hand first curled in 15 years ago, but over time its just become natural and I've learned to do almost anything with just my thumb and index finger. My index finger is quite deformed and my whole hand aches most days but its been useful enough for me to live with it. I spent years getting botox in my hand and my leg every 3 months because that combined with my DBS would loosen my muscles up enough to at least make it less painful. It sometimes would straighten my hand and foot completely but other times it would just get weak. Over time, the botox stopped working and we thought maybe my body just got used to it. My doctor suggested we try a new drug called xeomin. It would be injected the same way the botox...

This is a hard topic for me to write about, and something I don't share with many people but I feel like explaining how my mind works might help others like me not feel alone. I talk a lot about my dystonia because most of my symptoms are visible and I get extremely embarassed about the way I look or walk. I try to hide my hand, which I'm usually successful at but hiding my foot isn't as easy. I walk off balance most of the time because my foot is almost turned completely sideways. I don't let it affect my speed or stop me from doing things which I guess is good but because of that it causes other issues with my knee, hip and back. Anyway, I share that stuff so people know why I look the way I do and also to spread awareness. What I don't share is the anxiety and worry I deal with every single day. I worry about little things like what to feed my family for dinner, how do I find time to clean my house, etc. I worry A LOT about the kind of mother I am and how I ne...

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...

Every day feels like a blur. I've been dizzy and lightheaded almost every day since the end of September. When I try to read anything, even just a book to Max, I have to open and close my eyes several times until I can see because when I first look at the page all the words combine into a cloud of chaotic letters that dont make sense. Every time I eat my stomach hurts so I try not to eat but then I feel even more lightheaded and nauseous. Its a cycle I hate to be a part of several times a day. My dystonia has been worse because I didnt get my injections yet but then the right side of my body started acting up and Ive been having trouble swallowing. My neurolist suggested I shut my DBS off until my appointment next week but within 24 hours my right foot was curled in. I decided to turn it back on but as soon as I did I lost control of my right arm and the right side of my face. Jim helped me switch some settings on it but when adjusting the left side of my body my right side went c...