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

Archive for April, 2012

My Top 20 for Planning an Event

Written by Katie. Posted in Fundraisers, Memorable Experiences

So needless to say, I learned a LOT from planning “An Evening With Chris Trapper To Benefit Invisible Illnesses.” These “lessons” will definitely come in handy as we begin planning the second annual.

Here’s my Top 20:

1. Get a venue secured first, and put it in writing that it is secured. Otherwise you will be scrambling, panicking, and using up all your cell phone minutes trying to find a new venue, because the other one fell through. (Thank you Lou and Harry’s!)

Five For Friday 4/27/12

Written by Katie. Posted in Five For Friday

1.  Medical Stuff:

  • 2 Days of PT: 1 strengthening, 1 Graston’s.
  • I had an OMM appointment.  Usually I see my doc every other week, but it had been 5 weeks.  Immediately upon examination, her eyes got big and she could not believe how outta whack my body was.  The highlight was when she said, “Whoa! You have some party going on in your pelvis.”  Needless to say, she fixed my “party.”
  • No home rehab.  I have been letting fatigue win, which does not make me happy.  I am vowing to you all (to hold myself accountable) that I will get back on track next week.

The \”Speeches\”

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Favorites, Fundraisers, POTS Awareness

For documentation sake, here are Allie and my speeches from “An Evening with Chris Trapper to Benefit Invisible Illnesses,” which was held on April 14th at Lou and Harry’s Sports Bar and Grill.

Katie’s Speech:

“Starting to feel better, so bring on the weather I feel I’ve prepared for anything…

We are the ones who are never afraid, We need no rehearsal to dance. We’re well aware this may be our last chance,

So bring on the avalanche.”

 That was an excerpt from one of Chris’s songs, “Avalanche.”  For the last two years I have been learning how to face my Avalanche.  And you know what? The fact that I am able to stand on my two feet in front of you tonight instead of in my wheelchair, is one of the reasons for me to continue to fight to face my Avalanche.

Five For Friday +5 4/21/12

Written by Katie. Posted in Five For Friday

Hello, blog.  Remember me?  It’s Katie.  I have missed you so.

I cannot believe that I have not posted anything since April 8.  That is a record.  It is definitely time for me to catch up on some writing therapy.

I am pretty sad to say that I missed my first “Five For Friday” since I started my blog a year and a half ago 🙁  I am trying to be kind to myself but it irks me and my OCD personality.

So, I am going to do a “+5” on this one to try to catch myself, and all of you up.

Invisible Illness Event Week Updates

Written by Katie. Posted in Fundraisers

We are 6 days out until our big fundraiser featuring Chris Trapper!  The excitement is building!  Here are the latest updates:

  • We will be having a silent auction with some pretty sweet stuff, from 6-7:45.  Autographed pictures, facials, festival tickets, rounds of golf, wine, restaurant gift certificates, etc…At this time we are able to accept cash and checks, and we are working on getting the credit card system up and running by Saturday.  There is also an ATM at Lou and Harry’s.  All proceeds made from the silent auction will be split among the three charities: EDNF, NDRF, and VF. 
  • We will also have zebra t-shirts for sale for anyone interested.  The money made from the t-shirts will also benefit the three charities. 
  • We will have informational tables set up with information about EDS, Dysautonomia, and Vasculitis.
  • Allie and I are working on our “speeches.” My hands are getting sweaty just thinking about it. 
  • Lou and Harry’s staff will have scanners that will scan your ticket at the door to allow entry.  If you need your tickets re-emailed, let Allie or I know.  Also, anyone 21 and older will be required to wear a wristband since it is an all-ages show. 
  • As for press this what I know, at this time:  
    • The fundraiser will be featured in City Pulses’s Calendar of Events.
    • I will be interviewed tomorrow, April 9, by Melik Brown, on his show “Time Slot.”  You can listen to the interview live over the internet here: http://www.ustream.tv/channel/time-slot-2x.  It will then air on local TV on Wednesday, April 11, on channel 16.
    • Chris Trapper will be on John Bommarito’s show on 107.1 (Ann Arbor) on Friday, April 13th at 2:00.  John will be asking him about the event so tune in if you can!
  • We are now offering student ticket pricing!  College students, come to Lou and Harry’s on Chandler Road (in advance or on day of the event) to purchase 1/2 price tickets at only $15! One ticket per ID, please.
  • The hot, local band, Avon Bomb, will take the stage at 10:30 at the conclusion of the event!  Your ticket covers this band as well.
  • We still need a videographer!  Anyone out there willing and able?  Email me if you are interested.  The purpose of videotaping is to be able to post the event on YouTube to continue to raise invisible illness awareness.   

After months and months of hard work by many, it is crazy that we are less than a week away.  We hope you are excited!  We are!

Event Website: