Tuesday, April 2, 2019

I don't have the spoons.

Photo copyright Aji, 2019; all rights reserved.

Too greedy to wait for the hay to get into the trough.

I apparently failed yesterday in making my situation clear. I'm going to try again. Most of you have already heard this and understand, so feel free to skip it.

When I say I don't have the spoons, I mean exactly that. I don't think some folks understand precisely what it is I face very day right now. Yes, that's ableism, but I don't even have the spoons to get into that.

For decades now (all my life, actually but that went un-DX'd, of course), I have been dealing with a complex of multiple autoimmune conditions. They cause me chronic, daily, unceasing pain and fatigue, all over my body. I had learned how to work around a good deal of it, push through most of it, but the pain and exhaustion are always there, in every part of my body, every second of every day.

Nearly a year and a half ago, I almost died. Twice. I've had multiple episodes since then, including more last night, and no one can figure what the underlying mechanism is. Something (that is NOT angina) is making my coronary artery shut down in ways that are truly dangerous. It's hard to get through the day (and especially the night) when you wake up literally not breathing and you have to worry that every such episode might literally be your last, and that's been my life every. single. day for 17 months now. I had to wait months last year to raise the imaging money, which found nothing pertaining to that yet, but did find three tumors, two on my liver and one in my thyroid. 

Last month, I was informed that I had thyroid cancer. Not the easily treatable kind; one of two kinds that don't have a good 5+-year outlook. That's terrifying. It took weeks to see the surgeon, who then informed me that he didn't believe the biopsy or the reading, and ordered it redone. I had that redone last week, with a lot more material taken and a lot of pain with it. I'm now waiting to find out what it shows, and whether I even have cancer, or, if I do, what kind and how it might (or might not) be treatable. The kind of stress on me all of this year so far is indescribable.

In the meantime, I have been dealing, as I have said repeatedly, with the migraine-inducing task that is this year's taxes, which I expect finally to be able to take to the preparer today (because my cognitive deficits from my various conditions are now so great that I cannot trust myself not to get it wrong, so we have to pay to have it done). In the meantime, I am dunned daily for the five figures' worth of medical bills I still owe, even as I pay out hundreds, often thousands nearly weekly this year on new ones. Every time the phone rings, my blood pressure skyrockets.

I need people to understand that I have nothing left. I am in survival mode in the purest sense right now. I am never a social butterfly at the best of the times, but imposing conversation does not help; it makes my mental state far worse, because it's one more added and very immediate layer of stress. And as badly as I feel for everyone dealing with financial and medical issues of their own right now, I cannot afford derailment from my own if I am going to survive this. If you don't have to deal with this level of disruption in your life? You are blessed, and yes, you are privileged, and please be grateful for the fact that you are not in my shoes (or those of others like me). I'm not asking people to come and sympathize with me (I don't even want it, actually; I don't want to talk about any of this, and this is skeeving me out even to do this but I'm at my wits' fucking end). I'm just asking you not to center yourself in my face when I'm literally fighting to live. And if you're one of the folks who does that repeatedly, it's time for you to engage with yourself on why that is.

I've got nothing else. I just don't. You can't begin to imagine how bad last night was for me physically (and therefore, psychologically, too; it's terrible to shake yourself continually awake because you're afraid that you're not falling asleep, you're dying), nor how bad this day is as a result. Suffice to say that I'm drowning in five figures' worth of medical debt, with another five figures' worth probably coming very soon. Here are the links:
  • My Patreon, The Interstices (Writing Between Worlds) (and if you subscribe today you won't be billed until April 1st for March);
  • Wings's site, for sales, with lots of new items posted;
  • Wings's direct PayPal link;
  • A way to buy me coffee (which actually goes to all of our medical bills, which continue to mount);
  • Amazon wishlist, which mostly consists of animal and household stuff, with the kibble back off it, because Wings can't lift the boxes right now with his shoulder;
  • Partial registry #1, from Bed, Bath and Beyond. I've added two or three new kitchen-y things on it now, stuff that I didn't realize we'd need.
Sales, sharing Wings's site (and testimonials, if you got 'em) — that's what we need. Thanks.



All content, including photos and text, are copyright Aji, 2019; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner.

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