BENEFITING: EHLERS DANLOS NATIONAL FOUNDATION
Oh, it is on, my darlings, THE FIGHT IS ON!
My bootstraps are broken from pulling myself up continually.
I now refuse to submit my carcass to the inept attentions of providers who are completely ignorant about my conditions whereby I have to run a mini-conference at the beginning of the visit to educate them. I think that I should start charging them a consultation fee for my own self, and that is just flatly unacceptable.
I have seen too many doctors with their pants down where I work as a critical care nurse in a medical ICU at a teaching hospital, and their self-delusional mystique left the building years ago, my darlings.
I demand better care for my patients. I am a militant advocate at work for my patients all the while stewing in my own quiet agony and fatigue that I cover up with every hair properly in its place, lipstick in line, and beware the brightly colored scrubs as they are my disguise, my camoflauge to mask my pain and to keep me from frightening my patients to death.
So why should I now demand the same standard of care for myself and my fellow commiserates?
The answer is obvious.
We shall DEMAND PROPER CARE AND TREATMENT for our conditions until we receive them!
Easier said than done, yes, this I know all too well. I have been turfed by a gaggle of 'specialists' who deemed me 'too complicated', but you MUST keep on.
You will have your days whereby you find yourself deep, deep down in an abyssal trough, hurting, fatigued, depressed, with the dark dragging shackles of anhedonia dragging you down, down to the ground, and wondering why you bother at all, but there is always that one bright shining moment, that flickering flash of presupposition and you see, you feel yourself DOING something, and the shackles fall, and you rise again.
The longview is our only view sweetpeas, we fall, we rise, but we keep fighting.
We ABIDE, we HOPE, and we FIGHT.
I have decided while making the sister Firebrand Facebook page that all proceeds raised will go to either the EDNF, The Ehlers-Danlos National Foundation, of which I am a member and/or The Stanford School of Medicine Center for Narcolepsy (this is where my brain is going when I take a dirt nap darlings). The links below will give you information to which you will be donating your hard earned cash.
I would be content even if you just read some information and familiarized yourself with either condition because knowledge is power, or if you donated directly via their respective websites. The purpose of this after all is to raise awareness and funds, and not my ego as it is neither delicate, nor in need of your assistance and validation by showing off big donation numbers on this page.
Ehlers-Danlos National Foundation
Stanford School of Medicine Center for Narcolepsy