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When It Rains, It pours

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 lose those fingers.  When I had DBS, my life changed again, for the better.  I opened my hand and it was amazing.  I started PT and to much of my surprise, my fingers gradually opened more and more and the doctor said I wouldnt need surgery to lengthen the tendons that have shortened from being closed for so long. 
Well, last week my life changed again.  For some reason my hand curled back in.  I dont know why but I am absolutely devastated.  Like I said, though, complaining isnt going to open my hand.  Im continuing to fight this even if it takes everything inside of me.  I am a fighter, not a quitter and I will get past this.  Every morning I wake up and look at Hailey's gorgeous smile and think to myself, I need to get better for this little girl and I WILL.  Part of getting better, though, is finding a cure.  I am going to become an advocate for dystonia and start contacting congressman and legislatives.  People need to know about this and know that people with dystonia have a very hard time working full time.  Because of this, we are unable to get health insurance.  Its just not right.  How are we supposed to get better with no insurance? I think the problem is too many people don't know about dystonia, so when they hear about it they have no idea what to think.  I'm willing to start writing and calling around to get the word out there.  Another way Im trying to get people to know about it and help to raise money to find a cure is the Dystance4Dystonia walk coming up.  It is only 2 weeks away.  I hope to see you all there!  Register now for a fun day with family and friends for a great cause.  Lets walk for a cure!  I appreciate any and all help I can get.  Also, if you cant walk but want to be a part of it, I am looking for volunteers!!  Let me know!  Email me for more details.  asleeper14@yahoo.com


Just a little update on Hailey.  She's doing great.  She is growing faster then I can process and starting to repeat everything Ryan and I do.  She has the most beautiful smile in the world and she is what keeps me going.  Her favorite things to do are read books and dance.  She is starting gymnastics tomorrow, I cant wait!! 

Thanks for stopping by, Keep following for more updates! :)

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