April 2, 2014

Days are now in single digits!

I have always used this blog as a forum to help others to inspire others, to see a woman’s journey with a rare condition through my eyes.  I am not sure I have ever felt the way I have been feeling these days..going through a battery completion.  I no longer drive – my eyes are too weak, my hands are too shakey – I want to be careful to myself and others.  I am tired by 3pm.  I can no longer form a sentence by 4.  I have thoughts in my head but making them out of my mouth is too much effort and sounds garbled.  Work gets harder and harder every day which for me someone who has prided herself as a career woman has made me frustrated and sad.  I don’t have energy to work out…my life has truly changed in the last several weeks and will continue to do so for the next week and half.

I always hear, Carrie you are on of the strongest people I know.  It is a statement that bothers me.  Dystonia has been my super power, the power to keep on moving, the power to keep on striving for better.  Dystonia has given me strength.

This morning when I woke up with minor tremors and an obligatory feeling that I may be getting sick (happens every time before surgery), I can see the end…I can see the light of the OR and for the first time I have to say this is not a marathon it is definitely a sprint.  April 11th can’t come soon enough…My OR time has already been changed and I know I’ll be hungry and thirsty that later it gets pushed back but you know what, I don’t really care, I just want to get back to a place where I have energy to speak, to drive and to be physical.  So I share my story to let all of you know listen to your body and always be your own advocate in this healthcare world we live in.

I am thankful to the many heartfelt words I have heard from friends in the last several days and weeks!  I am truly lucky to be surrounded my all of this love!

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