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

Five For Friday 5/20/16

Written by Katie. Posted in Five For Friday


1. Medical Stuff:

  • I was supposed to have PT but ended up having to cancel and go to urgent care instead because of ear pain, and the fact that it totally freaked me out that I woke up and could not hear out of my left ear. After three rounds with a peroxide ear gun, my ear was back to normal and I could hear again. Sighhhhhh…: )
  • 2 Days of Home Rehab.
  • I was in Indiana on Wednesday at the TMJ & Sleep Therapy Centre to pick up my new mouth orthotic that is meant to help stabilize my jaw and hopefully relieve my jaw, neck, and head pain I get from TMJ (and EDS). Well, it has not gone as planned. I tried sleeping with it two nights in a row, and it is just way too tight and painful. So, back to Indiana I go for adjustments when I can figure out a day I can get away again!
  • I had my fifth infusion on Monday. Still very grateful to be able to have this treatment for POTS!

2. Surprised is an understatement when I was presented with the “Shout About it” award for demonstrating service and dedication in education from the Michigan Education Association. I am very humbled and touched, and feel I am the blessed one to have the privilege to work with my babies each day!

3. I spent a very productive and successful day on Thursday at the Senate and the House. I am SO excited to announce that for the third year in a row, both the Senate and the House unanimously adopted resolutions declaring May 22-28, Invisible Illness Awareness Week in the State of Michigan! Thank you Senator Curtis Hertel Jr. and Representative Andy Schor for working with our foundation and for your leadership and support on this! Awareness and education are key to bringing visibility to invisible illnesses! Stay tuned for our social media campaign that we will launch in honor of the week tomorrow!

4. ZEBRA ZOOM 5K Run/Walk! Isabelle and Zoe worked tirelessly yet again to put on another awesome zebra zoom! From going door to door to recruit participants, to securing sponsors and volunteers, to making the BEST zebra awards, to raising over an incredible $1200 for Life as a Zebra Foundation, we could not be more grateful to these amazing girls and their selfless hearts. It is because of people like these two that we are able to what we do! Also, a big thank you to the Wynn family and the Ziegler family and to everyone who came out and supported! We are truly touched. Thank you so much for helping us bring visibility to invisible illnesses!!!

5. Thursday night, my Mama won the prestigious Elsie A. Maile Award for Outstanding Elementary Teacher of 2016. Love you, Mom! We are beyond proud of you, and are so grateful for everything you do for us and others. Thank you to everyone who came and packed the board room to support my Mama!


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Comments (1)

  • C. W. Lyon


    After reading your site, I’m amazed at the things we have in common. I chose to comment here just because the comment about temporary deafness caught my eye. I was born permanently deaf in my right ear. Which means I can’t relate to the odd feeling of being deaf since I don’t have a reference. And I hope that I never develop a problem in my left ear, but I’m new to EDS.

    I started “having problems” around 2009, but I can look back now and see that I had symptoms as a child. I especially had problems with scarring, though I have an odd grace in my movements that has protected me. I have not been formally diagnosed, but my GP is certain that I have EDS. I went through the tests for everything else, I was told it’s Fibro/ME, and then denied disability or even the acknowledgement by the government that I’m disabled because Fibro is automatically ignored.

    Anyways, ignore my rambling. I tend to do that. I want you to know that I GREATLY appreciate what you are doing here. Our symptom onsets have been different, and we do have minor symptom differences, but your words are VERY enlightening. It’s just so hard to accept this. I spent 7 years studying and obtaining 300 credit hours and 3 degrees in order to get into intel and counterterror, and just as I’m ready to start a career, my symptoms have crippled me.

    Please don’t give up on this site. I hate to call you my guinea pig, but I read this and see what has worked for you, and it makes sense. I can see things that have SEEMED helpful in the past, but I didn’t keep at it. What you have been doing is going to be a template for me. I’ll take on what works and throw out what doesn’t, and that makes me more thankful than I could possibly express.


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