Home About MeLife as a Zebra Feature Story

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

Mar 04 Life as a Zebra Feature Story

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

Here it is zebra friends and family!

Tags: Allie, Chris Trapper, Gymnastics, Home Rehab, Larry, Life as a Zebra Foundation, Max Ieuter, Media, Physical Therapy, Sebastian, Sponsors, Surgeries, Teaching

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Comments (1)

Meghan

March 7, 2013 at 8:46 pm | #

Loved it! You are AMAZING!

Love you, love you

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Meghan

May 12, 2013 | #

Loved it!! And love you!

Katie

May 10, 2013 | #

Tonya! I owe you an email! I will look back at your questions and email you in the morning. Thanks for all of your support! Hope you are well. Talk real soon…

Tonya

May 10, 2013 | #

Congeatulations!!!
I have two questions:
1. You’re standing while packing those baskets, do you force yourself to stand at times like that when you could sit?

2. Great zebra neck pillow I’ve been looking for more supports and pillows, do you have any recommendations? I need a better pillow behind my neck when I’m sitting in my recliner and probably lumbar support and something for my tailbone on hard chairs. There’s so many to choose from, it’s hard to know.

Tonya

May 4, 2013 | #

Great to here, Katie! I wish I could have such an in depth dr appointment, I haven’t been on the ER for a while but I can’t work and my exercise is moderate. But I keep working, I think my muscle problems from EDS have a lot to do with that. Right now I’m researching a lot of ways to ease those problems, trying to find braces, pillows, and supports etc. I don’t have a dr helping me so its trial and error but I’m trying my
best, I’ve been doing craniosacral therapy weekly and hopefully that’ll help my muscles activate and all of my pain. I think CST falls under OMM? I’ve been going for about two months and we’ve finally seeing inklings of progress. My csf flow is slow but its not getting caught on hang ups anymore! Unfortunately some muscles release & go back to back every week, hello, si joint, she said its very hypertonic .

How do you stay occupied when you are feeling your worst?

Dave

May 4, 2013 | #

If I’d known you needed tickets to my band I’d have just given you some when we worked together Wednesday.

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RT @traceyrowe: Lots of laughing, dancing and gin last night. Best of all lots of money raised for St Ormond Street Hospital and #EDS @1deborahterry #tired

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To all my fellow #EDS ers, how do you cope with a holiday abroad? Is it possible? Any tips, suggestions please #EDSawareness #spoonie

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