My New Journey

When I first started this journey, it was what I thought was just one little old diagnosis. It was a rather long, twisted and bumpy ride full of lots of stops and well…. just complete breakdowns, to be completely honest, before the destination was reached.  First, there was Dysautonomia and PoTS. Then hEDS and MALS….

Quote of the Week

My apologies for my lengthy absence. I have much explaining to do. For now, I will begin with a quote of the week.

My Reflections of 2021

Describing this year would be an interesting challenge as there have been so many high and low moments throughout 2021. There have been extremely joyous and happy moments and there have been extremely sad and low ones, too.   This is a pivotal point in the year as we embark on closing the chapter to 2021 and…

Quote of the Week

Having yet another nerve block done tomorrow and crossing my fingers that it helps. However they have not usually done much for me in the past and even when they do, not for long. Now, I have recently learned of PRP therapy or Platelet Rich Plasma therapy. A regenerative medicine. This is supposed to be…

Chiari Malformation Awareness Month

Yesterday I started Neuro Rehab. Three hours a day dedicated to learning to manage these leftover symptoms. How fitting is it that I started on the first day of Chiari Awareness Month and that it also falls on the same month as my birthday? So, now it’s Chiari Malformation Awareness Month. That special time of…

Quote of the Week

Whenever people ask me what I do, I often respond with “Whatever it takes.” What does that mean? Well, sometimes it means pushing myself. Sometimes it means resting and taking a nap. And sometimes, it means just enjoying the little things, listening to music, pursuing the things I am still capable of doing. I may…

What You Don’t Know About My EDS

I have Ehlers-Danlos Syndrome. I also have most of it’s comorbidities: PoTS, Dysautonomia, Cranial Cervical Instability, Chiari Malformation, Spinal Stenosis, Spondylolisthesis and Mast Cell Activation Syndrome. People often downplay the seriousness of my EDS. Not out of malice, mind you, but due to a lack of understanding. “Well it can’t be that bad, EDS just…