Thursday, December 21, 2017

Solstice, and a world turning over. Lots of expenses today, but a good direction. Sales/shares very much needed.

Photo copyright Aji, 2017; all rights reserved.

That was our light tonight. It got more brilliant, but this was the best one the iPad could manage. Stormy skies and ethereal light all day long, though — perfect for the Solstice.

And, of course, this is only the second-longest night of the year; the Long Night was last night, given that the actual Solstice was at 9:28 local time this morning. If we had not adopted the dominant culture's way of marking time, we would be celebrating what is, in the oldest indigenous ways, the first hours of the Earth's actual new year. And it did feel as though it was a new year today; despite feeling physically crappy from yesterday's episode, I had an incredibly productive day in terms of basic tasks, and then some promising results this afternoon, and we have both felt a sense of spiritual renewal all day.

Today was my latest follow-up with my new doctor. We have come, in a sense, full-circle, and we are now returning to the brass tacks of what happened on November 10th (and to lesser degrees these many times since), and looking at the possibility of esophageal spasm, complicated by some oddities in the branching of my nerves in that area of my chest. Since they will be closed the two weeks over the holidays, she has refilled my nitro, agreed that the CPAP is not the solution and endorsed staying on the O2, prescribed two supplements designed to help with peristalsis and smooth-muscle function, and issued orders for a special compounding of a particular drug that is generally used in far larger doses for a different purpose to try to get my autoimmune symptoms to back off a bit. And perhaps best of all? My labs.

I had a . . . moment, shall we say, when they called me with the results two days ago. I haven't said anything, because I was that upset. People who have never suffered through the constant battle that is unspecified autoimmune disease literally do not, cannot, understand how badly we need something, anything, to show on our labs. It doesn't matter that 25% of all people show nothing on labs or the usual testing; insurance and liability have long made docs completely gun-shy about provisional DXs where there are no positive blood results. I'm part of that 25%, and always have been, and what it means is that no one will actually treat my illness. [It also gives a certain type of doc, of which I've seen far too many, what they consider grounds to dismiss everything as unimportant, irrelevant, or worse. This doc is not one of those.] At any rate, what I was told over the phone was that "everything's normal except your cholesterol is high."

Welp.

The former was just more of my usual nightmare, and I was completely discouraged, because if ever there should have been a time for anything else to go badly to show, one would think this would be it. The latter was just weird, because past docs have always called me "the poster child for perfect cholesterol." It codes as high until it's broken down, and then my HDL (good) is always WAY high, while my LDL (bad) is low. So this had me worried. I figured a statin, at the minimum, which didn't thrill me, given my late mother's battle finding one that didn't cause her rhabdomyalosis. Turns out my LDL is only 14 points high (doc says mine's lower than hers), my triglycerides are great, and my HDL is way up there at it's usual fantastic level. So no statins. And on the other labs?  I have never, EVER in my life pulled such a great sed rate or CRP, and given that the latter is by far the best indicator, over literally every other possible factor, of dangerous cardiovascular disease, that's fabulous news. Whatever's going on with me now, when it comes to managing my autoimmune disease and overall health, despite my constant chronic pain and fatigue and despite seven years of dangerous living conditions, I've apparently been doing everything right. The cash outlay is terrible right now, but we have a good direction going forward.

But for now, there's so much that needs doing, and so much I still can't do. It's incredibly frustrating to be so limited in my activities, and the extra burden on Wings is immense. He's finally gotten a little studio time, but that's been existing stuff, not new inventory. In the meantime, there's virtually no tourist traffic here, because there's no snow, for one, and everyone's hurting. It's a tough time. As I said last night, sales are way, WAY off this season. This is what usually gets us through the next four to six months, the holiday sales, and they're way down. Part of it is the mess that is our so-called government, with the fraud at the alleged top and the great swath of destruction he and his minions are carving through the country. Part of it is that that hedge-fund jackass built that stupid lift on the peak and blasted the mountain with explosives, and the spirits are now thoroughly pissed, and there is NO snow, so there is no tourism, either. I have no idea how we'll meet even minimal expenses, much less how we'll help our friend get down to her cancer treatment appointments. We couldn't do it this week, and her truck remains without a clutch. Forget what remains to be done on the house for now. We need to make some sales. A lot of them. But sales are not just what's going to keep me alive and Wings healthy; it's going to help other folks, too. Given the circumstances, I'm leaving up the donation link, too, and the registries have some new items on then, mostly lower-priced, to replace stuff damaged by the RV or given away when we first moved into it seven years ago. So please share our links:
  • Wings's direct PayPal link;
  • Wings's site, for sales;
  • Wayfair gift cards, to replenish all the furnishings that the RV has destroyed in one way or another.
  • Partial registry #1, from Bed, Bath and Beyond. There are new kitchen-y things on it now, stuff that I didn't realize we'd need to replace (either because the RV ruined it or because we gave it away when we had to downsize).
  • Partial registry #2, from Wayfair. Still waiting for them to resolve this fulfillment/shipping problem they have with their site. Even so, I've added some things (kitchen/dining room stuff mostly), most of which are comparatively reasonably priced. Now, it's going to be mostly odds and ends that make this place more liveable, because of the sheer volume of stuff destroyed by too many years in the RV (e.g., by the oven and stovetop, by the wiring, by the water, by the mold, etc.), or that we simply gave away seven years ago because we had no room and no place to put them and despaired of ever being able to use them again. A CHANGE ABOUT WAYFAIR:  NO MORE CROWDFUNDING. Their Web site coding is bad, and it will not permit crowdfunded items to ship. Items purchased outright arrive in two business days, but you can't even get the others out of the warehouse. 
As I've also been saying, I am still catching up, and will be now for a while. But this is the holiday season, and the sales/commissions from these few weeks are what keep us alive throughout the whole long winter and spring months (to say nothing of what's in the offing medically), so please continue to share the links. And please refer folks to Wings's site (and if you have an endorsement, too, so much the better). I'll be trying, slowly but, I hope, steadily, to get caught up over the course of this week. We have some massive expenses coming down the pike, and a lot of testing yet to be done before I'm out of the woods. So please keep sharing all our links. For now, I'm just so damn grateful to be alive, to have a healthy heart, to be back home with the love of my life and our dogs, the whole world is beautiful, even in spite of my terrible depression. Thanks again, to everybody, and we love you all.





All content, including photos and text, are copyright Aji, 2017; all rights reserved. Nothing herein may used or reproduced in any form without the express written permission of the owner. 

No comments :

Post a Comment