Swimming Against The Current

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...

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...

Its been almost a month since my surgery. That morning started with a splitting headache before I even got to the hospital. I think part of it was because the surgery was late in the day and I couldn't eat the whole day before or that morning. We brought Max to my parents house and headed to Boston. My surgery was scheduled for 3:30 and we got there a little after one. I checked in, got lab work and before I knew it I was changing into my gown and fancy slipper socks. I asked for some IV tylenol which helped the headache a bit then the surgeon came in and they told me to shut my DBS off even after we told them it had a surgery mode. So, I shut it off then off I went into the OR. I remember moving onto the operating table and what seemed like seconds later they were pulling a breathing tube out of my throat. They woke me up too soon so I felt it being pulled out. yikes. The next thing I remember is being in recovery and telling the nurse my nose hurt. She was working on getting me ...

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...

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...