An eventful couple of days.

Photo copyright Aji, 2021; all rights reserved.

That was yesterday, and yes, it was pretty close. So were all the others too quick for me to catch. It looks like we may be in for more of the same in a few more minutes; the wind is already howling out there.

It's been an eventful couple of days even apart from the weather, and I'm just going to drop it all in here because I'm frankly too wiped out to do a second post, and I have too much other work to do besides. I got my suture out yesterday, and also got my labs and biopsy results back, so let me haul through this as fast as possible:

First, no TB, as we figured, so that means that tomorrow I start the hydroxychloroquine. That means that my immune system will be artificially suppressed, above and beyond all the autoimmune issues I deal with already, and I've already returned to double-masking and gloving up absolutely everywhere. 

The second big thing was the biopsy. Nope, no trace of cancer, which means they found no metastatic cells in the sample. My doctor took it from one of the most affected areas, so if it were going to show up, it would've been there. There is one long-term caveat, though: None of this means that those cells can't turn metastatic in the future, nor does it mean that the effects of the lupus can't trigger it, either.

What it did find was as apparently unreadable as everything else in all of my biopsies and labs and imaging, so my body also apparently intends to remain on point to the bitter end. The pathologist (NOT my doctor; the path who read the sample) declared that it looked like a follicular infection, but it's not. She also declared that there was a small chance that it could be a connective-tissue disease, but she didn't see any other evidence of that.

LUPUS IS A CONNECTIVE-TISSUE DISEASE.

Yeah, I'm frustrated. They will ignore the evidence right in front of them to contort their findings into what can be dismissed as essentially "nothing,," because that's what medicine in this country does. It's like teaching to the test, only in medicine: diagnosing to the insurance companies' demands. Never mind that there's no insurance company involved; after this many generations, it's become the way everything's taught, for fuck's sake.

Oh, and I forgot: The tissue changes in my breast, the ones that look exactly like early manifestations of IBC? Are still spreading. My doc said that they were MUCH more visible to her yesterday, and more extensive, than they were when she saw me nine days previously (and she was already shocked by their spread then). She still can't figure out what it is, why it's manifesting this way, or what it might mean. But yesterday she felt it necessary to get photos to add to my chart. Yes, it's encouraging that she's thorough, but not so encouraging as to the why of that.

So. Fortunately my doctor refuses to be constrained by small-minded corporate greed. The provisional DX is, as I suspected it would be, lupus mastitis, equally provisionally defined as "cutaneous lupus" (this is in addition to the SLE). Unfortunately, the threshold treatment is steroids, and while I do have a very small monthly prednisone prescription, there are two different reasons why I cannot take them consistently and long-term: 1) a pervasive family history of diabetes (even though I'm not diabetic, although I am hypoglycemic); and 2) I fall into that category of people with headaches as a side effect who also get intra-ocular pressure, and for people who get that latter problem, sustained use can trigger glaucoma. So she went with a topical steroid in hopes that there's enough effect on and in surface tissues to make a difference. In 4-6 weeks, we'll see where it stands and re-evaluate. By then, I'll also have 4-6 weeks' worth of the Plaquenil in my system, and maybe I'll be lucky enough to have a little bit of respite from the pain.

Speaking of which, I need folks to understand that this is not the ONLY autoimmune problem I deal with on the daily. As I was coming out of the doctor's office yesterday, my right shoulder began to hurt, right in the rotator cuff area. No, I hadn't done anything to it, no strain of it, nothing. The joint just slipped slightly out of place, and now the pain between my shoulder and the middle of the right humerus is beyond excruciating, and I have my right arm in a sling. I'm still using the therapy boot, and I'm getting myself adjusted to using my cane every time we go anywhere. I'm not sleeping, so she cut my other autoimmune med back from 4 tablets daily to one-half tablet daily. I got a little bit of sleep last night, although the right shoulder and arm pain made it mostly impossible. And, of course, there's new research out that suggests that people with chronic EBVS, like me, are at special risk of long COVID because the EBV virus gets reignited by the coronavirus infection, so beginning tomorrow, I will going out into public only on the rarest of occasions, and then always gloved and double-masked no matter what. We both agree on that, but Wings was the one who said it first. And this will put an even bigger load on him.

Meanwhile, another $160 out the door. And of course everyone else wants their cut. I was finally able to pay the insurance bill Wednesday, and we bought a small load of firewood, because it's getting cold at night again now. Another $75 out the door Tuesday for the labs, with probably a subsequent bill to come. Given that I'm essentially not sleeping at all, which makes the pain and the brain fog so much worse (so bad I can't work), things are getting really grim. Aside from that, I still have to pay our quarterly taxes online tonight, and there are likely to be more bills on the last round of labs, too; more meds, more more more more . . . . That means sales, but I don't have the physical wherewithal to chase it, because of my pain and fatigue levels, along with some other problematic symptoms that are probably the lupus, being entirely off the charts. Still, I have to suck it up on this front, too, because we need sales, and I have to shove the rest down long enough to make some. That's it; nothing else matters right now, and I can't do it alone. Wings has A LOT of new work, so I'd be grateful to everyone who shares it, and of course, if you're in the market, keep us in mind for purchases.

Anyway, links are here:

• Sales here; 
• Testimonials here; 
• Amazon wishlist here (priorities are all the mosquito-prevention items, especially the portables and the patio-surface ones, because Wings can take them around the land with his as he works);
• Patreon here;
• Ko-fi here.

And if you've been contemplating a purchase? This would be a very, very good time to do it; I've got to make up this staggering outlay somehow. There's lots of fabulous new work, so please watch for all of it and share all of the links. 

All content, including photos and text, are copyright Wings and Aji, 2021; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner.