Swimming Against The Current

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...

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...

It's so hard to stay positive when everyone around you is negative. Everyone is sick, everyone is dying. Every time I turn on the news there are more shootings, stabbings and murders. What has this world come to? I don't know how much longer I can take it. The pain is there worse than ever, constantly. Most people get annoyed with me when I talk about it so thats why I write, no one has to read it. When I don't talk about whats happening I end up in a bad mood all the time and just sit there and think to myself how much my body is aching and crippling. Sometimes I just want to let it out, to scream and cry and tell someone that I'm losing use of my entire body. I haven't been able to straighten my fingers for two and a half years and my wrist for a year and a half. I've completely lost my left hand and it kills me inside every time I think about it. I am sick and tired of wearing a brace on my hand, its uncomfortable, it looks ridiculous and its imposs...

There is nothing in the world I've ever wanted more than being a mother. The most important people in my life have always been my family. My mother is the greatest woman I've ever known and I wanted nothing but to be just like her when I grew up. She has guided me through life, making me smile and wiping my tears when I needed her to. She has been there for me in more ways than I could ever express. Every time I'm having a bad day, my mom always makes it better. She is an amazing sister, aunt, grandmother(mooma), daughter, friend, but most of all she is an amazing mother. Another very important person in my life is my father. Constantly having a smile on his face, he makes everything and everyone happy. He's been there for me in so many ways and I cant thank him enough for all his love and support. I always hoped to someday have a relationship like my parents, who have been married over 30 years. All of my hopes and dreams came true the day my daughter was born...

December 8, 2004 came sooner than I hoped. I had gone to my pre-op appointment and was in good health overall to do this surgery. I was at Children's Hospital in Boston and ready as I was ever going to be. I was diagnosed with subacromial impingement with anterior instability and was going to have an open subacromial decompression with closure of the rotatorinterval. I was petrified to go through with this because of how badly my first surgery went but I knew I could get through it with the help of my family. They brought me back to the OR, did the surgery and I woke up with a sling and ice pack, extremely sore, nauseous and exhausted. After a few hours, I didn't feel as bad. My sling was big but nothing like the gunslinger I wore last time and they gave me anti-nausea medicine so I wasn't as sick. The doctor let me go home that night and told me to follow up in two weeks. I was able to start physical therapy after the two weeks and the whole experience wasn't n...

I got a letter in the mail yesterday saying my insurance has ended. I do not qualify anymore. Even though no one wanted to take my insurance anyways its still annoying that I don't qualify anymore. I don't know what I am going to do. I guess any kind of medication and/or botox is out of the question now. Hopefully these spasms slow down a bit. 9 more months in Florida then maybe I can get insurance in MA and go back to my neurologist there. I'll just keep my head up and hope it doesn't get any worse before that!

Monday was a bad day. I counted 8 spasms in my foot and my neck also got stuck. I felt scared to move, petrified to pick up Hailey and depressed at how fast its progressing. Tuesday was better. I went for a long walk and did wii active, I felt good and had a lot of energy. Yesterday was bad again. I lost count on the spasms but they were there. I'm having a hard time thinking positive at this point. I'm still in the process of finding doctors here that are willing to help, I dont know why everything has to be so difficult and take so long. As I sit here and think about this dystonia, I feel like it has taken over my life but then I think about people who have it much worse and think that this isn't bad at all. I recently heard about my old principal's 6 year old daughter who is dying of cancer. How could I complain about anything when they are going through that? I see her smiling face on her facebook page and it makes me want to be a better person, she has b...