There is no handbook for this illness. But I am determined to share as much and give you as best of a guideline as possible to make the most of what you’ve been given.

Took my one and only to college and now trying to see the direction my life is going.

Just because it feels like it’s over doesn’t mean it is. Every movement can be therapy.

The Sound Of A Bucket List. Meet Ella Coonen. The subject of a documentary directed by David Kaye. I was honored to get the opportunity to meet this incredible young woman. See how she is managing her life after receiving one of several diagnoses last year. EDS being one of them. A rare genetic variation that will cause her to lose her hearing entirely.

Every minute I have to work on my body. If I had to do my hair like I did in the 80s today, I would never be out in public.

This is not what I expected to be doing at the age of 56. I’m not breaking records or anything, but I’m making it and managing.

Catching up on the support groups, while managing proper posture. Some individual welcomes just could not get done.

Trying to re-pattern, my fascia and do my exercises all while handling daily activities that I turn in to my physical therapy. Join me???

I have turned every movement and every activity into some form of PT for my body. I am re-patterning my fascia. Even in my sleep. Join me??? please follow us on Spotify.

Every minute of the day is PT for me. Overwhelmed but not done.