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

5 For Friday +1 5/25/12

Written by Katie. Posted in Five For Friday, Memorable Experiences

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This past week has been one of the craziest, most exhausting, wonderful weeks I have had in a long time.  I stepped out of my comfort zone a LOT this week.  As I sit here and type as I reflect back on the week, I can honestly say it feels good.

1.  Medical Stuff:

  • 1 day of Home Rehab.  Yup, that is all.  Unacceptable.  I had a hard time balancing everything going on with rehab this week.  Next week, I will have to make up for it.  I already texted my physical therapist, Katie, to be ready to kick my butt on Tuesday.
  • No doctors appointments.  Amazing, I know.

2. I kicked off the week in Toledo with my friends, Steph and Theresa, her Mom and Dad, my new friend Jenn, and one of my POTS doctors, Dr. Bev Karabin.  Steph did an awesome job organizing “Team Zebra” for the University of Toledo’s Heart (and Dysautonomia) walk.  If you have been reading all along, you know I make 50 goals in January for the year.  One of my goals was to walk a 5K. So this was the day I set my sights on conquering this goal.  It was a hot day in Toledo as we walked, but I surprised myself, and not only did I finish, but I was still able to stand, and walk, and talk afterwards.  I became a little emotional at the end because I remember trying to walk around my block last year and becoming sick.  When I got home, I crashed and slept 3 hours, but it was so worth it.  Thanks again, Steph, for a great day and a fabulous event!

Info Table

Steph and my "say" about Dysautonomia.

Team Zebra (minus a few)

Dr. Bev! Whew, I look rough, but I did it 🙂

3.  On Tuesday, it was time for me to present to the Michigan Senate.  I was so NERVOUS, but by the time I got up there, I was feeling really a tad bit fired up by other people’s testimonies in favor of the laws, and I was ready to say my piece.  Plus, the Senators, (along with my lawyer of course), were actually very kind and made me feel at ease.  I wish I could have gotten more pictures inside the Senate room but I got the feeling that, that was a “no no.”   I received a lot of positive feedback after my lawyer and I testified, so my fingers are crossed that it will make a difference.

My attempt at getting a picture of the Senate room but then Big Mare yelled at me to put my phone away. Probably a good idea.

Ready with my Senate Cheerleader.

Being goofy. Lightening the mood...

Let's do this!

The first page of my testimony I will be mailing to the Senators and sponsors on the committee.

4.  I had an unbelievable meeting on Wednesday about the 2nd annual Invisible Illness Benefit.  Mark your calendars for April 13, 2013!  More details to follow…

5.  By Thursday, the events of the week and the heat had caught up with me.  I knew I had to listen to my body and stay home from school and rest, in order to function and be okay for Zebra Day.

+1.  Zebra Day was yesterday.  With the help of many people, we organized a fundraiser at my school to raise money for Ehlers-Danlos National Foundation and National Dysautonomia Research Foundation.   We sold zebra t-shirts for $5.  We raised $900, and that total is still climbing.  I presented to the school about Ehlers-Danlos and Dysautonomia awareness using my story, my experiences, and what I have learned along the way about both diseases.  Isn’t it crazy that I was MORE nervous to present to my school than to the Senate?   However, everything went so well and the kids were awesome!  I was extremely impressed by their attention and the questions they asked.  One 6th grader raised his hand and asked, “So from what I am hearing, Ehlers-Danlos Syndrome is caused by a gene mutation.  Is that correct, Ms. Katie?”  I told that child I thought he should go to med school.

So now between the Invisible Illness Benefit in April and Zebra Day, we have raised close to $14,000 for EDNF, NDRF, and VF.  SO cool.

The zebra cookies we gave to all of the kids.

The t-shirts. On the back they say: "Zebras make hoofbeats too."

Wearing my stripes, and ready to present to the kids.


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