So I just realized I never posted about my eyes. Half of you probably think ive gone blind by now. Anyway, I went to Mass Eye and Ear in Boston a couple weeks ago. They did a very thorough eye exam as well as a field study. The field study was very bad... this is what my other doctor had told me too. This doctor, though, thinks it was bad beeause of my involuntary hand movement. Maybe I pressed the buttons at the wrong time or something. In other words, he does not think I am going blind. I was so scared I was losing my eye sight!! I do however have facial dystonia that the eye doctor in Boston noticed. My right eye and right side of my mouth kind of twitch. Some people may think Im winking at them haha. This doctor even told me I dont need to wear my glasses all the time...just to drive and watch tv. Thank goodness! I am going back in about a week to have a manual field study to see if the results are any better. Ryans taking the day off so we can bring Hailey into Boston for the day before my appointment! It should be a fun day as long as I get good news again!
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...
Thanks for stopping by my blog. I first stumbled upon your blog post about being pregnant with dystonia. Now I am pregnant with dystonia and looking for any source of inspiration. Your blog is awesome and so informative. I too am trying to be proactive and blog about living with dystonia as well. Keep up the great work!!! www.questofthenocturnalbaker.blogspot.com
ReplyDeleteBeing pregnant with dystonia was scary at first but for some reason, most of my symptoms went away during those 9 months. I had a lot of pain and some problems during labor but it was worth it when I saw my baby girl!
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