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

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. 

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.”

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.

What is Normal Anyways? #NHBPM Carnival

Written by Katie. Posted in Ehlers-Danlos Awareness, Invisible Illness, POTS Awareness

I have decided to join the National Health Blog Post Month Carnival.  I just may be crazy with the way I have been feeling and with everything that is jam-packed on my November calendar, but I am going to do the best I can.  The challenge is to post everyday for the month of November, using the daily health prompts provided by WEGO Health. 

EDS Tweets

Twitter response: "Invalid or expired token."

POTS Tweets

Twitter response: "Invalid or expired token."