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My Princess & My Dystonia

My daughter is what keeps me going. Every morning when I wake up in pain, I look into Hailey's eyes and realize how lucky I am to be her mother. She is absolutely perfect in every way and I can't imagine how I ever lived without her. She's growing quickly, already 3 weeks old and becoming more and more alert. She loves to be rocked, loves her hair bows and loves to look into mommy and daddys eyes. I am so excited about our life together and watching her grow.

My dystonia is getting worse and worse. I am really getting frustrated with it and with the health care here in Florida. My right hand goes numb when I carry something on that shoulder, I get spasms in both my feet and my neck has been getting stuck. The skin on my left hand is just falling off and is now bleeding. Taking care of Hailey is so difficult because I never know when a spasm is going to happen and it scares me to death. I have called what seems like every neurologist in the state of Florida and no one accepts my insurance except the doctor I saw in Tampa who doesn't even know how to pronounce dystonia. I am hoping and praying I wake up one day and I am just better. My shoulders just ache and I feel like a terrible mother.
Hopefully someday they will find a cure.

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