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

Five For Friday 9/28/12

Written by Katie. Posted in Five For Friday

1.  Medical Stuff:

  • This was a very quiet week for me medically.  I loved it.
  • 2 Days of Home Rehab.
  • 1 Day of PT.  It was the PT student’s last day (who I have worked with for the past month), so I spent a while talking with her.  She said she wanted to thank me for teaching her about EDS and POTS, because they never learned about it in school. She said after working with me, she went home to read up on Ehlers-Danlos Syndrome and found virtually one sentence in her textbook(s) saying some patients can have valve regurgitation because of EDS. That was IT…Honestly this made me sad and pretty frustrated at first… then I felt that familiar fire that usually comes after the frustration to raise more awareness for these overlooked diseases.  I was reminded of this quote:

HOPE has two beautiful daughters:

1) ANGER at the way things are.

2) COURAGE to change them.

(St. Augustine)

 2.  I got to see my in-laws twice in one week!  Last Sunday, I spent a great afternoon with many of the Jaskolski women in Garden City for a baby shower.  Then last night, Brad and I went to Xiao for dinner with my MIL and FIL.  It was so nice to be able to just sit and chat and catch up on life.

3.  I must have been living in a fantasy world this summer when I clicked “join” on two separate Facebook events to see a band and a performer I have wanted to see for a while.  Rusted Root played last Sunday night in Lansing, and Martin Sexton played Wednesday night in Grand Rapids.  So yes, that would have been two late school nights in one week.  Needless to say, I did not get to see either one of them, and will have to wait until they come back this way again.  Not going to either one of the concerts was one of those many “chronic illness social choices” I have had to make, which many of you may also relate to.

 4.  I took September off from benefit planning to get acclimated to school again.  I need to kick it into high gear once October hits.  I received the package of CD’s in the mail this week that I have been waiting on to begin promotions.  My October goals include press kits, the beginning of silent auction work, and to start working on securing sponsors.  We are almost to the 6 month mark! Gah!

  Reminder: Save the Date: April 13th, 2013 for…

The Second Annual, “An Evening with Chris Trapper to Benefit Invisible Illnesses.”

5. Modern Family is back!  Gorilla and Elephant, anyone?  That show really does make me laugh out loud.  Every single week.

Tags: , , , , , , , ,

Trackback from your site.

Comments (1)

  • Jennifer

    |

    Thanks for the quote. I’ve had a very “angry” week involving things that I felt were out of my control. Now it’s time to have the courage to change things and recognize that I do have control. 🙂

    Reply

Leave a comment

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."