Find The River

Hey now, little speedy head The read on the speed meter says You have to go to task in the Continue reading →

The Microscopic-Macroscopic Life Of An Invisible Illness

This week brought me two orders of magnitude, perspective, and frames of reference in our life with EDS & POTS. First, the macroscopic Continue reading →

The Devil’s In The Details

Yesterday was a big day for those of us with Ehlers-Danlos Syndrome. You would never know that families all over Continue reading →

I’ve Evolved, Mutated, & Am No Longer Afraid

Today marked a new day for me. I am no longer intimidated by the Emory medical establishment. Their quiet clean Continue reading →

5 Things I’ve Learned Having a Chronically Ill Child

1. As long as everyone has been fed, the house can remain a mess. 2. I’m definitely older than I Continue reading →

Off The Road

Oh boy. This has been a long time coming…it has been brewing and fermenting inside of me for at least Continue reading →

Fighting For Ordinary, Pt. 2

I am learning the discipline of carrying-on, the stiff upper lip, the one-foot-in-front-of-the-other method of facing the day. I am Continue reading →

Fighting for Ordinary, Pt. 1

Recently my 16-year-old daughter, Sophie, was diagnosed with a genetic disorder called Ehlers-Danlos Syndrome (EDS) and an accompanying autonomic disorder Continue reading →