I realize I’m posting a bit nonsensical and out of order these days, I guess the writing comes as I process and there are countless stories to tell. I doubt many people are reading these anyways, so I’m just compiling all of this so I can one day turn it into a book.. which will flow smoother than these blog posts.
I honestly didn’t realize how triggering it would be to hash up details from my physical journey (which also happens to be a very emotional journey) and how everything has played out to get me to where I am today : sitting at my desk in Los Angeles, California with insurance in my wallet and the hope of a better tomorrow.
One of my amazing new Doctors and support team had me write out my medical history for him as well as different medications I’ve taken throughout my life. It was good for me to get it all down in timeline form, seeing how everything has built upon eachother, or rather disconnected at different times during the course of my 32 years. My journey is one shared by many of my friends with Ehlers-Danlos Syndrome. I consider myself lucky that I didn’t ever get stuck in the trap of taking ass-tons of medicine and the hope for diagnosis loop-hole that so many people with Ehlers-Danlos Syndrome find themselves inside.
My genetecist told me that I was the “ perfect model for Ehlers-Danlos Syndrome” because my body has manifested all of the characteristic traits that are markers for Ehlers-Danlos Syndrome. In my choice to embody the fullness of this journey I am choosing to share this timeline with you here, so that maybe someone will run across this and go “OMG ME TOO!!! THIS IS WHAT’S GOING ON WITH MY BODY TOO!!” and we can start to help one another connect the dots and find solutions for managing the deconstruction of our connective tissue.
It’s also crazy for me to see this laid out in timeline format, bringing back so many memories and so much trauma to my physical and emotional body throughout my life. There’s new research out that shows individuals with Ehlers-Danlos Syndrome’s brains have an extremely hard time healing trauma pathways because our brain’s connective tissue cannot regenerate to reform new and healthy neural pathways. My medical history shows that Ehlers-Danlos Syndrome effect every system in the body, as it has and is still being played out in my own. I was told that my fragility made me weak and undesirable for a very long time, and I believed those words. Now, as I have reframed all of my wounds, I see how bad-ass and strong I am.. I see what a FIGHTER I am and how I have been so creative throughout the course of my short live to find ways to live a good life while also existing in constant non-stop pain. I got so many little tools up my sleeve and I can’t wait to share them all with you.