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

11/18/10 Thankful

Written by Katie. Posted in Thankful

Today I am thankful for my diagnoses.  After many, many months I finally have my answers: POTS and Ehlers Danlos Syndrome.  I am thankful that the phase of figuring out what is wrong with me is finally over.  I am thankful that it only took me 11 months to get a POTS and EDS diagnosis since it often takes others years to be diagnosed with POTS and EDS because there is not much known about these disorders. 

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. 

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