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

Jun 22 008

Written by Katie. Posted in Full size is 3456×5184 pixels.

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Stacy

May 21, 2013 | #

This will be short and sweet…thank you from the bottom of my heart for posting this. I needed desperately to hear this from someone else who is walking down a similar path. <3

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?

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Off to Cambridge for the Trustees meeting at Episcopal Divinity School. I get to vote to confer degrees at tomorrow's Commencement! #eds

canondanweir

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RT @MyalgicEncephal: Case definitions and diagnostic criteria for Myalgic Encephalomyelitis and Chronic fatigue Syndrome. #mecfs #spoonie http://t.co/MDRQdp4iLm

croydonme

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