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

Just Another Curveball

Written by Katie. Posted in Challenges, Chronic Illness, POTS Awareness

It’s no secret that I have been struggling with the ups and downs of POTS the last few months. More so than I have in a long time.

I’ve received a lot of questions, phone calls, emails, and concern from my amazing loved ones, so I thought it would be a good time to put a blog post out there. Plus, I miss writing.  It’s a wonderful way to communicate, help others understand, and to spread awareness which I believe in with all of my heart. Plus, it is simply a cathartic thing for me.

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.

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.

\”Stable:\” POTS in Toledo

Written by Katie. Posted in POTS Appointments, POTS Awareness

There’s always an air of excitement when it is time for me to return to Toledo to either see Bev or Dr. Grubb.  I think it’s because it took so long for me to get into them, knowing that they are two of the best Dysautonomia experts in the world.  Call it hope, call it an understanding, call it an appreciation for doctors who care and “get it”…call it what you will, but it never seems like a chore to travel to Toledo to see these two incredible doctors and people. 

Q & A: My Current Exercise Regimen

Written by Katie. Posted in About Me, Ehlers-Danlos Awareness, Physical Therapy, POTS Awareness, Questions

I recently received an email from a Mom whose daughter has just been diagnosed with EDS and POTS.  She had questions about my exercise routine with POTS and EDS.  It made me think about how I have really neglected this blog the last few months.  I am honestly having trouble finding the time and the energy to keep everything updated, but I am going to try and do better.  I feel it’s important; especially for awareness and documentation sake.  When I think back to why I started this blog in the first place, one of the reasons was to document my journey for learning to live with EDS and POTS.  When I was really sick, I remember looking all over the Internet for blogs that did the same. I found such comfort in reading about other people’s stories that were so similar to mine. 

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."