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

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…

Hard is What Makes it Great

Written by Katie. Posted in Challenges, Ehlers-Danlos Appointments, Favorites, Inspiration, Memorable Experiences, Thankful

If you have been following, you know I had my chance to cross off one of my goals for the year last week, which was to work out with the incredible Dr. Lavallee.   Back in January I had asked him at my yearly EDS check-up if he would ever be willing to work out with me.  He laughed a little, I think taken by surprise, and said, “But I don’t think you need to learn many of the exercises I do…I think you are doing well managing your EDS so far on your own. “

My Say

Written by Katie. Posted in About Me, Challenges, Favorites, Memorable Experiences

I feel like there is a time and a place to tell certain parts of your “life story.”   Sometimes, the time just does not seem right.  I have realized that this is okay, and often, the time will present itself when it is right and meaningful.  That is what happened to me this week.

When I was 17, something happened to me that changed my life forever.  I have always wanted to keep this part of my story

The \”Speeches\”

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Favorites, Fundraisers, POTS Awareness

For documentation sake, here are Allie and my speeches from “An Evening with Chris Trapper to Benefit Invisible Illnesses,” which was held on April 14th at Lou and Harry’s Sports Bar and Grill.

Katie’s Speech:

“Starting to feel better, so bring on the weather I feel I’ve prepared for anything…

We are the ones who are never afraid, We need no rehearsal to dance. We’re well aware this may be our last chance,

So bring on the avalanche.”

 That was an excerpt from one of Chris’s songs, “Avalanche.”  For the last two years I have been learning how to face my Avalanche.  And you know what? The fact that I am able to stand on my two feet in front of you tonight instead of in my wheelchair, is one of the reasons for me to continue to fight to face my Avalanche.

EDS Tweets

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POTS Tweets

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