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

Benefit Concert Speeches: 2013

Written by Katie. Posted in Chronic Illness, Ehlers-Danlos Awareness, Family, Favorites, Fundraisers, Invisible Illness, Memorable Experiences, POTS Awareness, Writing

For documentation sake, the following are Allie and my speeches from the Life as a Zebra Foundation’s second annual, “An Evening With Chris Trapper and opener, Joshua Davis Trio, to Benefit Invisible Illness Research” held at the Kellogg Hotel and Conference Center on April 13, 2013.

Zebra Questions #NHBPM Carnival

Written by Katie. Posted in About Me, Chronic Illness, Lists, Questions

Topic: What questions do you have for other patients?

One of the most important things for me is sharing with fellow zebras.  There is nothing like being able to talk to someone who is living a life similar to mine.  I’m sure many of you will understand what I mean when I say what an amazing feeling it is to meet someone who just “knows” what you are going through, because they are living it too. 

Let\’s Hear It for the Caretakers #NHBPM Carnival

Written by Katie. Posted in Chronic Illness, Favorites, Lists, Thankful

Topic: Write about your advice for someone caring for a patient with your condition

Caretakers in my opinion are unsung heroes.  Often it is the person who is sick that receives the caring phone calls, messages, care packages, etc.

My caretakers are the ones who have been behind the scenes, making phone calls for me, sitting with me during doctor’s appointments, driving me around the Midwest to see specialists, being there when I fall apart, making meals, bathing me, encouraging me, picking up prescriptions, supporting me, taking on more household duties, pushing my wheelchair, being my cheerleader, and the list goes on, and on, and on…

EDS Tweets

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POTS Tweets

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