Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Finally

Written by Katie. Posted in POTS Appointments

After 11 long months, I have my first answer.  I went to Cleveland yesterday to get the results from my autonomic nervous system testing.  I went into the appointment with low expectations, most of all to protect myself.  I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything.  The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn’t know what it was.  I would leave many specialist’s office feeling like a crazy person when I was told my tests were normal, or that they came back “beautiful,” while I was still having crazy symptoms that made me sick.

11/17/10 Thankful

Written by Katie. Posted in Thankful

Today I am thankful for the nurses and doctors I have seen in the last year who have gone above and beyond to help me.  I am thankful for honest doctors who are straight with me.  I am thankful for doctors who let me know in their own way that they will do what is in their power to help me.  I am thankful for doctors who are not afraid to admit that my symptoms are beyond their expertise so they help find me someone who can fit my needs.

11/16/10 Thankful

Written by Katie. Posted in Thankful

Today I am thankful for my Dad and the special relationship I have always shared with him. I guess you could say I have always been a Daddy’s girl.  I am thankful that I inherited his sense of humor, his love for traditions, his love for giving everyone nicknames, his love for Jimmy Buffett, and most of all his belief that family comes first.  I am thankful that we have a relationship where we can tell each other like it is. 

29

Written by Katie. Posted in Favorites, Memorable Experiences

I love my birthday.  I always have.  There is a running joke in our family that my birthday is the “Month of Katie.” I have always loved to prolong my birthday well into the month of November.  I am not sure why I love it so much.  I just do.  So this year, with Brad and my family knowing full well that I love my birthday, they kept asking me what I wanted for my birthday, what I wanted to do for it, yadda, yadda, yadda…


Because I wasn’t doing so hot at that time, I was being a major grump about it. I kept saying, “I don’t want to do anything.” Or “I’m not celebrating 29 until I have a diagnosis.” or “I just want to skip it.” 

EDS Tweets

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POTS Tweets

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