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

Five For Friday 2/8/13

Written by Katie. Posted in Five For Friday

1.  Medical Stuff:

  • 3 Days of Home Rehab.
  • Physical Therapy was canceled because my physical therapist was sick.  Lots of sickness going around lately!
  • No doctors appointments this week.
  • I had major issues this week with my POTS flaring, and therefore insomnia.  Sometimes my heart rate gets so high that it feels like I am running a marathon when I should be sleeping.  Insomnia then makes my POTS worse and it ends up being a vicious cycle.  So needless to say, it has been harder to function this week, but I keep telling myself that like everything else, “This too shall pass.”

2.   We had another snow day yesterday (I did 3 cartwheels).  I felt very thankful for the opportunity to get more rest!  It has become tradition that when we have a snow day, my Mom makes one of my favorites; stuffed peppers.  So last night, we headed over to my parents for a delicious “snow day” dinner.

003

3.  We are halfway to our sponsorship goal thanks to Gedderts’ Twistars USA Gymnastics Club, Sommers Schwartz, Bill Collins Ford, and Mount Hope United Methodist Church!  We are also close to launching the foundation’s website, and therefore ticket sales for the Life as a Zebra Foundation Benefit Concert!  My goal is to have everything with the website pretty much done by next Sunday.   (Thank you Sebastian!)  We are moving along…Stay tuned!

4.  I, like many, have fallen in love with the Budweiser Clydesdale commercial that aired during the Super Bowl, and with Kid President.  I wanted to post both videos so I can go back and watch them whenever I need a smile.

 Clydesdales

 Kid President: Pep Talk

5.  On Tuesday, I met with Max Ieuter of HOMTV and WILX to talk about my life with EDS and POTS, the benefit, and how Life as a Zebra became a non-profit foundation in November. It was decided at our meeting that Max was going to do a 5-7 minute human interest/community involvement feature story on my life with EDS and POTS, and the work I [we] are doing with the foundation.  For the next two weeks, Max will be shadowing me and filming visits to my doctor, therapy, work, foundation meetings, sponsorship meetings, and the list goes on…He has already filmed the sponsorship meeting I had on Wednesday at Gedderts’ Twistars USA Gymnastics Club, where I got to reconnect with my former coach and even play around on the trampoline for a few minutes.  Next is my official interview, and Max will also be interviewing board members, a co-worker, a couple of my doctors, Allie, my physical therapist, sponsors, and so on throughout the next two weeks.

I am really excited and thankful that Max has given me this opportunity.  Although I am extremely shy when it comes to this kind of stuff, and I usually avoid video cameras at all cost, it was a no brainer for me to go ahead with this project.  I believe any story in the media about various invisible illnesses can only help our mission to spread more awareness, and raise funds for invisible illness research.

Now if I could just get used to the camera.  It freaks me out.  I have decided to name it, with the hope of making it seem a little more friendly.  Any suggestions?

Tags: , , , , , , , , ,

Trackback from your site.

Comments (1)

  • Tonya

    |

    Like running is how I’ve described sleep to my dr. My sleep study showed that my heart goes crazy frequently going over 190 a few times well in the 200s and yet sometimes it’ll drop to 30. But that’s just it as soon as it drops it spikes, the EKG shocks people who see it! My dr started a beta blocker at night and it helped some, He wanted to retry the sleep study. Just like I said it helped some but still fill of cray cray. We added clonidine the begining of Decemeber and that’s helping even more but there are a few days a week I think I need more help. Look up Dr Alan Pocinicki and autonomic sleep disorders

    Reply

Leave a comment

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."