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

11/20/10 Thankful

Written by Katie. Posted in Thankful

Today I am thankful for my wheelchair, Wilemena.  We have had a love-hate relationship from the beginning but I am realizing more and more that she allows me to do normal things and gives me more freedom than if I didn’t have her. 

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.

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