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

Prolotherapy Through My Eyes

Written by Katie. Posted in Ehlers-Danlos Appointments, Ehlers-Danlos Awareness, Medical Team, Prolotherapy

I started prolotherapy treatments in 2011.  I have lost count as to how many I’ve had. I have learned along the way that prolotherapy is controversial in the world of EDS. The first EDS doctor I saw after I was diagnosed actually did not recommend it, although he admitted he did not know much about it. At that time, I was having a horrible time keeping my back and head supported without a neck or back brace. That doctor actually diagnosed me with cranial instability and sent me on my way with a referral to a spine surgeon, telling me he suspected the surgeon would determine that I needed a skull to C-3 fusion.

30 Things: Invisible Illness Week 2013

Written by Katie. Posted in About Me, Chronic Illness, Ehlers-Danlos Awareness, Invisible Illness, POTS Awareness, Questions

Hi friends! Invisible Illness Week is fast approaching (September 9-15). I was asked to fill this out, and just before I was about to respond with, “I already did it two years ago,” I thought about it and realized a lot has changed in two years.  Therefore, some of my answers are different and some have remained the same.  I wanted to post it early, before school starts, since I am unsure how my body will respond or adjust to being back to work again.  So here you go. My 30 things.

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.” 

Benefit Concert Speeches: 2013

Written by Katie. Posted in Chronic Illness, Ehlers-Danlos Awareness, Family, Favorites, Fundraisers, Invisible Illness, Memorable Experiences, POTS Awareness, Writing

For documentation sake, the following are Allie and my speeches from the Life as a Zebra Foundation’s second annual, “An Evening With Chris Trapper and opener, Joshua Davis Trio, to Benefit Invisible Illness Research” held at the Kellogg Hotel and Conference Center on April 13, 2013.

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."