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

Posts Tagged ‘Advocacy’

Five For Friday 1/10/20

Written by Katie. Posted in Five For Friday

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.

Let\’s Hear It for the Caretakers #NHBPM Carnival

Written by Katie. Posted in Chronic Illness, Favorites, Lists, Thankful

Topic: Write about your advice for someone caring for a patient with your condition

Caretakers in my opinion are unsung heroes.  Often it is the person who is sick that receives the caring phone calls, messages, care packages, etc.

My caretakers are the ones who have been behind the scenes, making phone calls for me, sitting with me during doctor’s appointments, driving me around the Midwest to see specialists, being there when I fall apart, making meals, bathing me, encouraging me, picking up prescriptions, supporting me, taking on more household duties, pushing my wheelchair, being my cheerleader, and the list goes on, and on, and on…

Being Your Own Advocate is a MUST

Written by Katie. Posted in Challenges, Diagnosis Path, Editorials, Memorable Experiences

The following article really spurred me to want to write this post.


I was reading it when Brad looked over at me and said, “What are you doing?  I didn’t even notice it but I was nodding my head repeatedly as I read the article.

I have been through some crazy times in my short 29 years, but nothing has ever compared to the extreme amount of stress I felt last year when the doctors could not figure out what was wrong with me.  When I think back, I wonder how I got through it still standing.

EDS Tweets

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POTS Tweets

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