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Showing posts from January, 2011

DBS

Last week I met my parents in Gainesville at my grandparents house. They drove down here with my aunt to go to my doctor's appointment with me. Thank god they did because it was a very scary day and I couldn't have gone there alone. I went to a clinic known as Tyler's Hope for a Dystonia Cure. I thought I was going to go in there and get botox and meds and walk out and be better in a few weeks. Things didn't work out like that. The doctor doesn't think botox or meds would help me. They think that deep brain stimulation (DBS) would be the best thing for me. I have to go through some testing and they have to watch a video of me then they will make their final decision. I am very happy they want to do something and they want to help me but at the same time I am more nervous then I have ever been. I have all these thoughts running through my head and I don't know where to stop. Every night I have nightmares of them cutting my head open and its terrifying

A New Year

2010 brought me many difficult times but it also brought me the most amazing daughter in the world. There are no words to describe my feelings for her and although it wasn't planned, I wouldn't change a thing. She is my life, my world and everything I have ever dreamed of. I have had many tough times with my dystonia. My spasms have become more frequent and annoying but mostly painful. While I'm sitting on the floor playing with Hailey my legs will just lock up. While feeding her, my neck has gotten stuck. It's the scariest thing I've ever experienced. The insurance here in FL is out of control but I have finally found something. I will be seeing a specialist at the end of January in Gainesville at the Dystonia clinic. I am hoping to get botox injections in my arm to relieve some of the pain and discomfort. I will no longer be able to breastfeed which breaks my heart because it is such an enjoyable bonding time for me and Hailey. But, without botox to hel