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

Archive for February, 2013

The 2nd Annual Invisible Illness Benefit Concert Launch Day!

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Fundraisers, Invisible Illness, Memorable Experiences, Music, POTS Awareness, Thankful

Dear friends, family, supporters, and fellow zebras,

Finally.

After months, and days, and hours, and hours…and more hours of planning, we are finally ready to launch ticket sales for our 2nd Annual, “An Evening with Chris Trapper to Benefit Invisible Illness Research.”

Five For Friday 2/15/13

Written by Katie. Posted in Five For Friday

1.  Medical Stuff:

  • I had a gyno appointment on Monday.  I told Max that this was an appointment I’m sure he didn’t want to shadow and film.  He agreed.
  • I saw Larry on Tuesday.  I was in major need of some OMM, or as I like to call it, “Larry magic.” He worked from my neck to my tailbone.  I felt like a different person leaving the office.

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.”

Fate, Family, Answers, & Genes

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Memorable Experiences, Questions

Ehlers-Danlos Syndrome is genetic.  Of the genes. Often inherited (though not always). This, I get.

What I have always wondered is if my EDS was in fact inherited, where in my family did I get it from?

My siblings don’t have it.  My parents don’t have it.  For three years, I have not known of anyone on either side of my family who has EDS.

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."