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

Five For Friday 1/10/20

Written by Katie. Posted in Five For Friday

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1. Medical Stuff:

  • Still fighting insurance. Still paying out of pocket for PT. My doctor wrote me an amazing letter advocating for me. We will see, but rest assured, I am not backing down for anything.
  • I had an infusion. Two bags of fluid. I finally remembered to bring my blanket and it made those three hours so. much. better.
  • One session of PT. Body was a mess after three weeks away. Thank God for manual medicine.
  • I began Morning Meltdown. I committed to 100 workouts. I look pretty ridiculous because I do it in my sports bra, underwear, tennis shoes, neck, and back brace in my basement. I figure sweat is sweat, right?! There’s no wrong way to get it done.

2. I could include this as part of medical stuff, but it has me so worked up, I decided to make it it’s own.

I do not lose my shit often but I was super close this week when a customer service rep for our insurance said, “Since you’ve been in PT so long and it seems to not be making much of a difference, you should just go see a surgeon and see if they can fix your injury.”

Enter, fumes. Enter deep breaths. Enter me starting my response with, “With all due respect…”





This exchange made me realize it’s time to get back to more chronic, invisible illness awareness work.

I explained my history with wheelchairs and braces and disability. I explained chronic illnesses that have no cures or fixes. I explained that I will be taking medical advice from my medical team who are well versed in EDS and POTS.

After explaining, she did say she would have to “investigate people like me more.” WTH.

Like I said, I’m still fighting. I think I can…I KNOW I CAN.

3. Let’s switch gears to something WAY better.

My baby girl and her smile that can brighten any day.Image may contain: 1 person, smiling, child

We figured, what’s one more giant contraption in our little house? ; )

4. Sooo, we also got a ball pit.

Image may contain: one or more people and baby5. And then, no caption needed…Image may contain: indoor

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