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

Five For Friday 2/16/18

Written by Katie. Posted in Five For Friday

1. Medical Stuff:

  • I’ve been on the Ketogenic diet for two weeks now. Days, 7, 8, 9 were awful, but it has gotten better. I learned the trick of drinking broth before bed, and it has made life much better. That tells me electrolytes/salt were low and I must keep them up or I will feel like CRAP.
  • One OMM appointment. We focused a lot on putting my upper ribs back in place. Damn ribs, work with us.
  • One Day of Home Rehab. FAIL.
  • Back to PT next week.

2. HUGE NEWS! Both on a personal level and a professional level, this makes me beyond happy. So grateful to whomever gave this overly generous gift to begin the quest to find more answers! Makes me do happy dances!

From the Ehlers-Danlos Society:

“An anonymous donor has presented us with a $1 million gift to jumpstart groundbreaking genomic research into genetic cause of hypermobile Ehlers-Danlos syndrome (hEDS), a rare, degenerative, and all-too-often disabling connective tissue disorder.

This is the single largest gift in the 33-year history of the Ehlers-Danlos Society, and the largest individual gift in the history of hypermobile EDS research.”

3. Andy’s Birthday on Wednesday!

The Valentine Baby of our family. It makes sense because my bubby has the biggest heart in the world. When I need steadiness, or someone to laugh at me, or exercise and nutrition advice, or motivation and inspiration, or a workout that will make me cry, or just plain wisdom, my bro is my go to. Happy Birthday, Andy. I won the brother lottery for sure. Love you so much xo

Image may contain: 15 people, including Kristen Dama, people smiling

4. Allie’s Birthday on Thursday!

This girl. My partner in…well…everything. We’ve been through a lot together, and I love that we have come out of all of it laughing and dancing. That’s because of Al. She’s the 7 to my 11, the Roma to my Bakery, the ribs to Gru’s rubs, the Chet to my onka, the Free to my Games, the PAN to my POTS, the smile to my face. Allie, welcome to the thirties. I thank God everyday you were born. Love you, Little Boo.

Image may contain: 18 people, people smiling

5. I don’t know about this world right now…it makes me so sad…especially when I begin my Thursday with this:

“Ms. Katie, is our school gonna get shot at?” ~one of my students after I asked for his lunch choice. BTW, he’s 5.




Our kids deserve better.

Our world deserves better.

Policy CHANGE.



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