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

We Have Launched!

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

Dear Family, Friends, Supporters, and Fellow Zebras,

Finally!

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. 

The 2nd Annual Invisible Illness Benefit Concert Launch Day!

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Fundraisers, Invisible Illness, Memorable Experiences, Music, POTS Awareness, Thankful

Dear friends, family, supporters, and fellow zebras,

Finally.

After months, and days, and hours, and hours…and more hours of planning, we are finally ready to launch ticket sales for our 2nd Annual, “An Evening with Chris Trapper to Benefit Invisible Illness Research.”

Heat and Tunes

Written by Katie. Posted in Music

The heat can break any time now.  I have been experiencing a whole new level of fatigue lately and I am convinced that it is because of this ungodly heat.  It’s really weird because even when I am in the air conditioning, it feels like my body still knows that the heat index is 105 degrees. 

Just something else I am learning.  Extreme heat + POTS = Bad combo for me. 

So glad to see relief is in sight by Monday. 

Since I have been spending a lot of time in the AC, I have been trying to work on a few pretty exciting projects, as well as immersing myself in music.  Here’s a few of my favorite tunes right now…

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."