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| Photo copyright Aji, 2019; all rights reserved. |
It's only August, and winter is coming.
Yeah, I mean that more ways than one, obviously. On the plus side, the hay's dropped already this morning (smaller acreage than last time), and is supposed to be baled around noon tomorrow. Also supposedly River will be back to help out this weekend with loading and stacking.
In the meantime, I'm . . . dealing with a new reality that's really part of my old reality, but I still have to get my head around the new information.
I'm getting questions from folks, and I don't want to have to keep repeating it, so I'm going to recap a bunch of things here, as briefly as I can make it.
For those of you who don't know, I've suffered from some nameless complex of autoimmune conditions apparently since birth. With this new information, I find myself angry all over again at the fact that, all through childhood, youth, and young adulthood, no one would ever listen to me, insisting that it was "impossible" for me to have any pain, and that I just needed to "stop looking for attention" and "not be lazy."
I was many things, but lazy was not one of them, and in my family, no one voluntarily went looking for attention, because that never ended well.
Anyway, I need not to spike my blood pressure, so I'm trying to divorce my thoughts from all of that right now.
So, the autoimmune stuff exploded when I got an early-generation flu vaccine, one that contained a preservative to which I have always been terribly allergic, and about which no medical professional either asked or informed me. But it's become clear that that merely blew it into the open; I already had chronic Epstein-Barr, among other conditions that no one would take seriously, and I was also suffering the mechanical repercussions of damage to my neck and back from an auto accident years earlier (one most definitely not my fault).
The autoimmune complex got tossed, invariably, into the trashcan labeled "fibromyalgia," because it enables the medical industry both not to have to deal with it in any serious way (all the while shaming me for trying) and also making it my fault that I'm in constant pain. I did everything, and more, and nothing ever worked. Meanwhile, as my body has aged, my pain has grown, and my limitations with it, and my depression with all of that. I gave up entirely on the medical profession and did not see a doctor of any sort (well, except an eye doctor) for more than seven years.
Meanwhile, we lived in subhuman conditions for seven years, the stresses (both physical and otherwise) mostly indescribable, certainly uncountable. And we worked to build a house. And just as we were moving in, I had what everyone thought was a heart attack. Twice. Except it wasn't.
To this day, no one knows what it was or why, or why I've continued to have smaller episodes since. I have managed to get an asthma diagnosis, again, apparently lifelong, and not only would no one listen to me when I said my chest hurt or I had trouble breathing, they told me I just needed to exercise more. Back then, I was active and a size 6. They've also ruled out angina, although it's clear that, when an episode occurs, my coronary artery is spasming and shutting down.
Fast-forward again to this January. I needed to get chest imaging done to rule out a tumor anywhere in that area. No mass in the chest, but they caught three other tumors (not simply masses, actual tumors, and let's use the correct terminology, shall we?), two in my liver and one in my thyroid. My thyroid function is, as it has been, right smack in the middle of normal. I underwent a biopsy in late February, and was given a diagnosis of either medullary thyroid cancer or Hürthle-cell carcinoma, neither of which has a particularly great five-year outlook for someone like me.
A month later, a different surgeon retracted the diagnosis. Two months later, I developed another big mass on the other side of my throat.
We still don't know. It's wait and see mode, mostly because after what has by now amounted to between $45k and $50K in total medical bills just since November of 2017, I can't afford the costs, and I also don't have the physical strength for traveling to and from Albuquerque repeatedly for something that could still be the second DX of Hürthle-cell adenoma (non-cancerous tumor).
Meanwhile, we began trying to treat the asthma, to to the tune of $300 a month. We've since learned that I cannot take inhaled corticosteroids of any kind; they produce hives and widespread systemic candidiasis of the skin (not thrush or anywhere else visible; epidermal). So, no standard asthma treatment either; a rescue inhaler and now, also trying inhaled glutathione to see whether I can tolerate that.
And I've finally been confident enough in my internal organs (see that whole "tumors" thing) to go to the chiropractor. I had a very bad experience with one ten years ago, and haven't been back, but this one and my doc are friends and colleagues, so I agreed to try it. What we learned is that my ligaments, always loose and stretched and constantly subluxing my joints at the best of times, are a mess all over my body. My clavicle was out of place; my scapulae too. My RIBS were out of joint. And so were my hips, but especially the left.
There's a likely DX here, for those familiar with EDS. There are several different variants, some more closely related than others. And at least with this variant, there's nothing to be done for it, insofar as there is no medication, no operation, no treatment protocol to fix it. It's also DX'd only with costly genetic testing. Indigenous people aren't much given to genetic testing, because our genes are not colonizer property, and it's all been misused in truly genocidal ways already. So I would have to have a number of really difficult conversations before doing it anyway, even if I could afford it (which I can't). It might be one thing if they thought I had some disease that could kill me in a matter of months but for which there is a successful treatment, but that's not the case. The only thing to do is what I am doing: minimal pain meds to take the edge off, careful exercise, chiro treatment, staying otherwise as healthy as possible and not adding stress to my ligaments, and now, adding in megadoses of Vitamin C. So I don't even have to go there with the testing, because getting the formal label would do exactly nothing for me in terms of improving outcomes.
But . . . the upshot is that I have constant pain, often terrible pain. I don't very often shed tears over physical pain anymore; I'm too used to it. But Wednesday was a constant battle to keep from crying, and I didn't always succeed, because the pain was so intense I literally couldn't take it. And yes, I'm fully aware that I "look normal," to borrow the ableist turn of phrase. I look healthy, if fat, now. And no one who looks at me has the faintest idea of what it takes to get through each day. I mostly don't sleep, which of course makes everything worse.
So here we are. This is what I'm up against, on the daily, and Wings with me, because he took this on and I couldn't be more grateful to him, but I also will not let anyone minimize the scope of the commitment involved or the love it represents.
Meanwhile, all this costs. Health care in this godforsaken country is priced to kill people. And there's a lot left to do by way of testing for other things still unidentified and/or unaddressed. There are also Wings's knees. And there are all the plumbing repairs on the house yet to be done, and the parts of the house that aren't yet complete in the first place.
Folks can help in several ways:
Testimonials are important, and there are several posted at the link. If you haven't submitted yours, please do, because this helps us make sales (and we keep you as anonymous as you want to be; you can see the kinds of options people choose in the various entries). The items on the wishlist are things we either can't get here regularly, or at all (or at a decent price), and they're mostly things either for the animals or the house. PayPal link is in the upper right corner of this page.
And above all, we need to make sales. So if y'all could help us out by sharing the links regularly, I'd appreciate it. I'm fighting a very big battle here every single day, and I can't do all of it alone.
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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