Swimming Against The Current

For some reason I thought these nine months were going to be great.  I thought I was going to have little to no symptoms and everything would be perfect.  At the beginning of the pregnancy I felt pretty good and the only real problem I had was my back but I thought it was because of the pregnancy itself more then the dystonia.  Im starting to think otherwise. My back hurts so bad I can barely step on my left leg.  My left foot has been curling in and today my back is pulling in making it difficult to do anything.  I have two birthday's to shop for and grocery shopping to do and I just cant seem to get to the store because I am in so much pain.  I dont know if I should see my neurologist, my ob, walk or just lay on a heating pad.  I thought walking was good but Hailey doesnt sit in the stroller so walking and carrying a 22 month old probably isnt great for the pain.  So, any way if anyone out there has any suggestions for me that'd be great! ...

When it comes to my dystonia, my surgeries and being sick, I feel like I am a very strong person.  I have gone through 6 shoulder surgeries and basically 4 brain surgeries in my 25 years of life.  Yeah, it was painful, I had side effects, I had problems with the infection and it was a long road but I fought through it, being positive through the whole thing.  When it comes to life though, I am not a strong person at all.  I cant stand up for myself, I cant say no, and I feel guilty for months if I make someone upset.  I try so hard to make everyone happy and its just impossible.  I cant seem to do anything right, I feel useless and like I have no purpose in life.  I am trying very hard to change this about my self, to be strong and stand up for what I want, what I believe in and what I need but its just so hard.  As for my dystonia...  Things are going great.  When I was pregnant with Hailey something very weird happened, my dystonia w...

As many of you know, I have been planning a dystance4dystonia walk for a while now.  The day has come and gone quicker than I would have liked but it was a very fun day.  I am very proud of myself and very happy to announce that we raised right around $5,000 towards finding a cure for dystonia.  We had about 60 adult walkers and close to 20 children there.  There were 5 people (including myself) with dystonia and one mother of a girl with dystonia who was unable to attend.  It was a gorgeous day and everyone seemed to enjoy themselves.  I am hoping to raise atleast double this next year.  I just want to say thank you to the YMCA for letting me host the event there.  I have worked at the y for 12 years so everyone knows my story and they were very supportive of me.  I also want to thank my family who helped me through everything.  Not only did they help plan this walk but they were by my side every step in my life as I struggled to f...

A couple weeks ago, as I had mentioned before, my hand curled back in.  I tried to contact my doctor several times to help not only my hand but the very painful back spasms as well.  I never heard from him, which was unusual because he always emails me right back!  I finally called the office again and they told me he was on vacation for two weeks and another neurologist was seeing his patients.  It took a few days to finally talk to this doctor, who agreed to see me last Friday.  I was having a lot of facial twitching and my hand was still curled in.  She decided to change my settings on my DBS a little but didn't want to mess with it too much since she wasn't my regular doctor.  She changed the settings and almost immediately after, my whole body went into spasm.  My foot curled in, my neck pulled back, face still twitching, hand and wrist curled and back twisting.  I have experienced this only a few times before and never at the doctors bu...

I've come to the conclusion that it doesn't help your problem to be depressed about it.  It doesn't help to complain or feel sorry for yourself.  It doesnt even help to call the doctor.  What I have will never be fixed and I need to get over that fact and move on.  I feel like I have been trying very hard to be positive and not to let my feelings show.  No one knows how hard it is to live with dystonia unless you have it.  Does anyone know what its like to take care of a 19 month old with one hand?  Make supper while holding her?  Even going grocery shopping?  There are many things in life that most people take for granted.  I never thought about how much I use my hand, until I couldnt use it anymore.  When my hand curled in, my life changed.  I had to adapt to life without a left hand.  It was hard but I did it.  I went three years in a wrist brace and my fingers curled in, the whole time fearing I may eventually los...

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 a...

About a year ago I was preparing myself for a major surgery.  At the end of April, I went to UMASS in worcester to have my DBS.  I was more excited then scared.  Although I would be awake, it would be a long surgery and I would probably have a headache after, I was excited for the results.  The day my hand opened was one of the best days of my life (besides the birth of my baby girl!).  To get an infection and have the device removed was just devastating.  I couldnt believe it.  All my excitement was shot the day my hand curled back in.  I was so upset I didnt want to even speak to anyone.  All I wanted to do was cry. I went back to Florida to be with Ryan until he graduated in August.  After the big move back to MA in September, I began to prepare myself for my second DBS surgery.  This time I was more scared than excited.  I was scared about the surgery because the first one hurt so bad when they put the screws in my head....