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

Five For Friday 11/4/16

Written by Katie. Posted in Five For Friday

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November! Time, slow down! Craziness!

Medical Stuff:

  • 1 Day of PT. For the first time in a few weeks, I had good energy, so we went with it and I worked out HARD.
  • No Home Rehab. That was a big fail this week.
  • I had an OMM appointment on Monday. In my Halloween costume which was interesting since I went from school and totally forgot to bring clothes. It was interesting to be manipulated as Snow White.
  • I had my monthly shrink appointment. Just so grateful for that man.
  • I’m still having issues with my eyes. Right now, I am experimenting with just steroid drops (rather than antibiotic steroid drops) to see if it keeps the flare away. Sighh. My body loves medical mysteries.
  • I slept a bit better this week. I am hopeful.

2. I  just want to say that technology is INCREDIBLE. On Sunday, I had the honor of teleconferencing with the CEO of Genefo who lives in Israel, and hearing everything their organization is doing for zebras. I just kept saying, “Where was this when I first got sick?!” So crazy amazing, and SO pumped to work with them in the future. We have been discussing the future since, and it’s pretty exciting.

If you have never done so, I highly recommend googling GeneFo, and looking around their website. It is free for patients, and has SO much helpful information.

3. I had the opportunity to relax on Michigan State’s campus for a bit on Tuesday. It was 70, sunny, and the leaves were breathtaking. I tried to make an imprint of it all in my brain so when the inevitable snow comes soon, I can go back to that happy day.  Fall on campus is the greatest.

4. Halloween! It was an exhausting day in the classroom, but one of the best. My kids were bursting with excitement, and seeing them all dressed up just makes me smile so much. One was a wolf puppy fairy. She created it herself. I love them.

5. Conferences are coming next week. So if you need me this weekend, I’ll be here report carding for hours. And hours. Fun times…: )


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