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Fear

 When I had my DBS placed the first time, I was scared. I didn’t know what to expect, I was just starting out my life as a mother and I was scared. I had never shaved my head, I had never been awake during a surgery and I really didn’t know if it was going to help me or not. After the surgery, I was excited to hear that my hand opened in the OR. I had hopes that my life was getting better!

When my head got infected I was even more scared. Going home with IV antibiotics for 6 weeks was the scariest thing i had ever dealt with. The headaches were nauseating and it was truly a scary time. Then they had to take out it out which was even more scary because my dystonia was going to get bad again.

When I found out my insurance company wouldn’t cover it to be done again you can imagine how scared I was. But we fought it, I had it done again and it worked!

7 years later, I was more scared than ever! I had recently got divorced and was now dating an amazing guy. I was so scared for him to see how bad my dystonia was getting. I was scared to go to the doctor and scared when I was told my DBS was broken.

The third time I had my DBS surgery I had nightmares for weeks that I was going to die. I felt sick to my stomach going into the OR and I laid there crying.. awake.. as they shaved my head AGAIN.

I was scared when I woke up but relieved to be alive. I was positive because I thought the surgery was successful. Little did I know.. it wasn’t.

The amount of scar tissue from having this surgery so many times is pretty significant. The DBS had to cemented in and now, 2 years later it’s hardly working at all. This might be the most scared I’ve been. I can barely walk and the Botox isn’t working for my foot anymore. I will not have DBS surgery again and there’s really no other options.

The day has come that I truly want the whole world to know about dystonia, spread awareness and help me raise funds for research when I host my 5k every year. I need a cure. I don’t just want it anymore.. I need it.

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