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

A Letter to one of the Best

Written by Katie. Posted in Ehlers-Danlos Appointments, Ehlers-Danlos Awareness, Inspiration, Thankful

Dear Dr. Lavallee,

I got your letter last week.  I think I smiled and cried at the same time when I read you were leaving your practice in South Bend and moving to a different practice in York, PA.  I immediately felt so happy for you but sad for us Michiana EDS’rs.  You have been there from the beginning, ever since I discovered I belong in this special club we like to call “zebras.” 

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,


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.”

Let\’s Hear It for the Caretakers #NHBPM Carnival

Written by Katie. Posted in Chronic Illness, Favorites, Lists, Thankful

Topic: Write about your advice for someone caring for a patient with your condition

Caretakers in my opinion are unsung heroes.  Often it is the person who is sick that receives the caring phone calls, messages, care packages, etc.

My caretakers are the ones who have been behind the scenes, making phone calls for me, sitting with me during doctor’s appointments, driving me around the Midwest to see specialists, being there when I fall apart, making meals, bathing me, encouraging me, picking up prescriptions, supporting me, taking on more household duties, pushing my wheelchair, being my cheerleader, and the list goes on, and on, and on…