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

Posts Tagged ‘Vasculitis’

We Have Launched!

Written by Katie. Posted in Foundation, Fundraisers, Invisible Illness, Music

Dear Family, Friends, Supporters, and Fellow Zebras,


After months, and days, and hours, and hours…and more hours of planning, we are finally ready to launch ticket sales for our 3rd Annual, “An Evening with Chris Trapper and Tony Lucca to Benefit Invisible Illness Awareness and Research.”

There have been many meetings so far.  So many triumphs.  So many acts of kindness and generosity.  So many emails.  And yes, even a few frustrations and tears along the way.  I have learned that just goes with the territory.

Two years ago, the dream was born for Allie and me. 

Five For Friday 12/13/13

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • 3 Days of Home Rehab. I upped my incline on the treadmill by two levels this week to try to get more of a burn in my legs. I know that for me, the stronger my legs are, the better I do with both, pain control and POTS sickness. I’ll be back at PT on Monday.
  • I had my December Larry appointment on Tuesday, which included lots of cranial and jaw OMM. One of the residents came in to talk to me first. I could tell I was confusing the poor guy more and more, as I answered his questions. When he left the room to see if Larry was ready, I heard him say to someone, “I have never seen someone like her before. I think I need some help with this patient.” Ha! In my opinion, at least he could admit it, and asked for guidance. I think it would be better if more doctors had the courage to do so.  SIDE NOTE: I have experienced a lot of pain in my life, but jaw OMM has to be up there with the worst. Holy tears in my eyes. It is amazing though how much better I feel afterwards.

EDS Tweets

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POTS Tweets

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