.The Cripple WitchThe Death Card
The worst thing about terminal illness, and the chronic pain that goes with it, is how little the people around you respect it.
Even doctors. And I’m tired. I’m tired of fighting with them to get my prescriptions each month, the ones THEY wrote to begin with. I’m tired of smug social workers and their “We’ll see what we can do”, when they bring by the wrong amount of pills that will get me through a week, as opposed to a month…I’m tired of having to close the door to my room so my roommate doesn’t hear me scream into the crook of my arm from the pain, because I have to dole out my meds to myself to make them last; cursing the doctors who know full well that if you don’t keep up pain medication schedule, pain actually increases…
And then they have the gall to wonder why my “depression” hasn’t improved with “treatment”. Why the fuck do YOU think, asshole?
Like, of COURSE I find myself wanting to die, idiot. And yes, I am extremely ambivalent about knowing I won’t be around a Hell of a lot longer, the way things are going. Sometimes, that seems terribly scary. Sometimes, the idea of having to stick around another whole five or so years seems interminably long. If I have to live those years experiencing this level of pain, every day, then I don’t think that’s something I’m interested in, thanks.
And the medical community — at least here in Chicago — clearly isn’t interested in helping me manage my pain. They make all kinds of promises, which never come to fruition. So, maybe things will be better in NY. At least, they seem to be for my soon-to-be new housemate, K, who is certainly doing better than I am. Far from perfect, but she’s able to see a pain specialist, consistently, and other specialists, and get more individual attention, at least. Although even having said that, she just was made to wait for over an hour in a treatment room because apparently they “forgot” she was there, and then gave her some nonsense advice so…none of us with EDS are immune to the medical community’s ignorance.
It really just makes me want to completely give up sometimes.
They don’t give a shit about treating us properly, they don’t give a shit, at ALL, about our chronic pain. It makes me feel truly violent sometimes. And as for most of the people in our lives — those of us who have serious chronic pain, those of us who have been told we should just give up and go into palliative care, go into a nursing home, wait to die — they don’t have the slightest idea. We lose most of them somewhere along the way because of it. Sometimes, we make the choice to let THEM go, after having enough of listening to stupid comments, insensitive attitudes, fucked up comments about our pain, our conditions, about, even, death. As a result, we retain a very few, hardcore base of friends who are in a very real way “ride or die”. And when I say “very few”, I mean we’re lucky if we get two such people — able-bodied people — who stick around and are still happy to be around us. It takes a strong person to be friends with someone with a seriously disabled person, a person with a serious chronic illness. An even stronger person to be friends with someone who might not be around in five years. But believe me, it takes even more strength to BE us.
And I am really fucking tired of being “nice” to make up for my condition, as if it’s something I need to apologize for. You know what? I don’t. And I am allowed to be pissed off when people act like idiots, or ignorant, or shitty. Whether it’s social workers, medical professionals, or just people out in the wild. And if I lose people along the way, MORE people, then they were meant to go. I am NOT an “easy” person. I never was.
Actually, that’s bullshit. I used to be. I used to go out of my way to present as nice and accommodating and all that bullshit. To make up for the “difficulty” of my strangeness, unconventional mind and ways, my intelligence, my femaleness, my beauty, my illness, my single parenthood, my sexuality, my kindness, my LACK of kindness, my living by logic in lieu of false empathy towards most humans because god knows most of you don’t deserve it, my disability, my creativity, my…everything about me that makes me ME in order to make getting by in the world less of a hassle for myself.
I’m 55 years old now — I have Vascular Ehlers Danlos and Fibromuscular Dysplasia, and I am so fucking done. Because it never did me any good anyway, and now I am looking at far fewer years than I expected, unless something miraculous happens — and hey, apparently it’s a miracle I’m still here as it is, so who knows. Anything could happen. But I DO know that I won’t get that miracle by having my stress levels where they are now, being mistreated by the medical profession and refused proper pain management this way.
Something’s got to give.
In the Tarot, the Death card almost never means literal death — but rather, massive upheaval and life-altering change. Burning it all down to the bones so that new sinew, muscle and skin can regrow. It’s a little late in the game for me, now — but with the time I do have left, I know that I absolutely cannot go on as I have, in unconscionable physical pain. I WILL not. So, this is a last-ditch effort for things to either change, completely, in a new place with a new medical team in a new environment with literal new air to breathe, in nature rather than this fucking concrete jungle (that I admittedly love with all my sore bones), or for me to finally let it all go.
I’ve been fighting for a long time. I’ve been in pain for a long time. And I am tired. My body is tired. I can feel that it isn’t going to let me keep going this way, if I have to be at this level of pain, day in and day out, for too much longer. I don’t want to keep going this way — let’s call it what it is. I hate it. I hate this traitorous body that hurts down in my bones every waking moment. I need for this change to work. I need some doctors to treat my pain seriously. I need to be able to rest, and to give my body a chance to recuperate some of its strength, if that is at all possible. And I pray to Gd that this new place will give me back some of the will to fight a little bit longer. With some new animals to help care for, with some fresher air to breathe, and a new housemate with a fighter’s spirit — because she definitely has that, in spades.
So..yeah. If you’d like to donate to my GoFundMe, there’s the link, down below.
And if you’ve been wondering where I’ve been, you can check out my Instagram at @cripplewitch; my hands have been in a lot of pain lately so typing has been a bit much for me and I’ve been doing these videos… But I took an oxy (I finally have a couple) so, here I am.
My GoFundMe!
Later, Kumquats…
#ChronicPain #ehlersDanlosSyndrome #FibromuscularDysplasia #health #life #vascularEhlersDanlos #veds #writing
JSkier 
StacyKess
オレノナハエラーダ