Many of you may wonder about my personal experience with living with Cervical Dystonia is like. I’d say there are no words to describe what I’ve been through, but I’m going to try.
First off, Cervical Dystonia is a neurological movement disorder characterized by tremors and muscle spasms in the neck and shoulder area. These spasms happen 24/7, 365 days a year. I like to describe it as me doing the rowing machine at the gym all day. With constant tremors and spasms can come pain, headaches, migraines, insomnia, and anxiety. Personally, I developed severe chronic pain, headaches, insomnia, and anxiety after my Dystonia diagnosis. More on that later.
I wasn’t diagnosed until I was 18 but my doctors and I believe strongly that I was born with Dystonia since I had many problems with my neck as a child. When I hit puberty and started experiencing stress, the Cervical Dystonia would come in episodes then, ten years ago, I woke up with my right shoulder inflamed. My life as I knew it changed forever. My late grandfather most likely had Cervical Dystonia. We shared the same symptoms but he was misdiagnosed. He managed the spasms in much of the way I do: medications, keeping a low stress life, and lots of naps. He was originally from Tennessee and lived life slower, which I think helped. I’m working on taking a leaf from his book.
After I was diagnosed, I received care from a terrible neurologist and had to wear a foam neck brace during an Indian summer in the city because he gave me too many injections in my neck of Botox. The idea is the Botox is supposed to paralyze the muscles, just as the case when others use it for wrinkles. This doctor now works in a day spa giving Botox treatments.
Moving on. I found a much better neurologist. The next round of injections were better. I wasn’t slowing down with work or school and I was slowly coming to terms with these changes. I felt the pain from the spasms but now I’d describe it more as an annoyance. Less than a year after waking up with a funky shoulder, I developed unbearable pain. At first, it was nerve pain. A few years later, it switched to being dull pain in my neck. Now it’s a combination of both. I think my pain was much worse than it should have been because I was totally under-treated and not believed for many years. I get treatment for pain now, but it barely takes the edge off. I still live in pain.
I also have spasms that are so terrible at times that it develops into a headache. Those headache leave me fighting to get through the day or resting in bed. Most nights I struggle to fall asleep. I even have anxiety about falling asleep. It’s no easy feat for someone whose symptoms change to get the right dose of medication, supplements, and timing. I can easily say that it takes a sacrifice to the gods to fall asleep some nights. My anxiety is not a constant problem, but when my pain is unmanageable and I’ve tried everything, I get that racing feeling. The feeling that I’m so overwhelmed, I don’t know what to do to solve this problem, and that the last place I want to go is the ER where they treat me like a terrible person because I don’t have a gun shot wound. When this happens, I try to watch a really good series on HBO or Showtime and remind myself that my only job at that moment is to breathe. I also think about the fact that some of the best doctors in the San Francisco, UCSF, and Stanford can’t solve this pain, then I can’t blame myself for lack of trying…or at all. So, I ride out the night and call my doctors and summon the strength to travel over 2 hours one way to see them. Then the cycle continues.
This is where you come in. I need help stopping the cycle for me and others like me who need more treatment options and a cure for Dystonia. It is truly a terrible monster of a condition that has no mercy and will swallow me whole if I let it. Luckily, I advocate for myself, fight back for better care, seek second opinions and think the word “no” is just waiting to be a “yes.” Others are not so lucky. The monster has gotten them. They have tried every treatment. Some treatments have helped me, but my case is a very rare gem. I’m not a candidate for DBS or any other surgery to ease my Dystonia or pain. I hate taking medication and I’m prone to side effects.
I want to live a better life than I do today. I am grateful for the life I have, but long for how much better it could be.
Today, you can help by donating $5 for the cure for Dystonia. For the price of a that fancy latte or less than a matinee movie ticket, you can make a difference. Every dollar helps. Go to the http://www.5dollarcure.com and donate today. Then, share this story and the website on social media with this hashtag: #5dollarCure4Dystonia. I’ll be forever grateful.Thank you,