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…

What I Wish for Others to Understand About EDS

When I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), it felt like everything that had happened in my life up to that point suddenly added-up. My entire childhood and adult life was filled with injuries and accidents that should have been massive red flags for hEDS, but because I was a gymnast and a dancer,…

My Chiari Surgery Recovery and CBD Pain Relief

As many of you know, it’s been about 7 weeks since my brain surgery. My headaches are mostly gone but I’ve still been experiencing a great deal of shoulder pain and neck pain (mostly in the front). Yes, I have painkillers and muscle relaxers but here’s the thing, I don’t like taking them. 1. They…

Chiari Decompression Recovery

Hello all you beautiful warriors! I apologize for my disappearance for the past few weeks but I am finally lucid enough to do a little writing. I am two weeks post-op and now at the point that I do not need my pain pills every four hours. It’s more like every 6 to 8 hours….

Two Weeks ‘Til Decompression

So today marks two weeks until my surgery and I’d be lying if I said I wasn’t nervous. I spent the entire day Monday engrossed with MRSA screenings and pre-op tests, not to mention my mind racing with thoughts of “Am I doing the right thing?”, “Will this help me?”, “How much will it help…