- I was at the point where my neck was constantly pulling and twitching.
- Every time I bent down to pick something up, my head would turn upwards to the left, and I wasn't able to see what I was reaching for.
- Using my arms/hands, to do simple things that we take for granted, was becoming impossible. The pain from my head twisting and turning had me in tears at times. These simple tasks were things like...opening the mail, cutting my food, zipping up my jacket, tying my sneakers, putting on socks, buttoning my pants...and even worse, all of these things effected me more as I was trying to do them all for my child each day.
- The anxiety that came from the embarrassment of people watching my head pull/twitch was enough to make anyone want to stay home. To this day, putting groceries or clothing by a register and reaching for my wallet can instantly cause my dystonic spasms to increase, while my heart is pounding out of my chest with anxieties that others are watching me.
- I had so many specialists tell me their thoughts of what was going on with me...I was just tense from stress, that an x-ray had shown I had a little arthritis in my neck, all I needed was an adjustment from a chiropractor, all I needed was an epidural procedure on my discs and I would be fine, etc.
- Finally a doctor was able to give me a diagnoses, and I was able to get the proper treatment. Which was Botox injections every 3 months for the rest of my life. Treatment was a success, pulls were less noticeable, and I was able to do all the simple things again without being in pain.
8 1/2 years ago I began treatment. I still have my challenges, but I am so used to living with this condition that I only notice it most when I'm stressed out or haven't done yoga/physical activity.
What's the purpose of this post? Not to tell my story over and over again, but to remind myself what I went through to get to where I am today. To remind myself that there are so many others that are still undiagnosed, still searching for a treatment that will work for them, have become depressed, have become introverted, have financial struggles, etc.
If you are someone who is suffering from Dystonia, are a caretaker for someone suffering from Dystonia, or know of someone with Dystonia please contact me for coaching. I can help you move to a happier/healthier place. I know, better than anyone else who doesn't have Dystonia, what your struggles are, what your worries are, what your pain feels like, the embarrassment from stares, and how it feels when others question your disease.
Don't wait any longer to reach out. My contact number is 631-988-4001, my email is firstname.lastname@example.org I want to help!