Skip to main content

Eyes

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! 

Comments

  1. Inda BlackwellApril 20, 2012 at 9:31 PM

    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

    ReplyDelete
  2. asleeperApril 21, 2012 at 8:52 PM

    Being 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!

    ReplyDelete

Post a Comment

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...
13 comments
Read more

Updates ❤️

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...
Post a Comment
Read more

Be the best you that you can be

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...
Post a Comment
Read more