Greenstorm's Journal

Well, at least some of it was PDA-induced. I got in my part of the form and immediately feel lighter and less like I want to die. Like, not at all like I want to die.

I've been unable to throw more than 5 pieces at a sitting for months, and yesterday evening I sat down and threw something like 8 pieces -- many were off-the-hump and several were cat food dishes, the easiest of pieces, but it was just nice to get outside that limit for once.

I've also been going outside, snuggling the dogs and looking at the snow melt back from the garden.

I'm probably going to come to terms at some point with how much energy I've spent, my entire life, working my way around my PDA into something that approached functionality. It's always involved having choices of some kind, and being thoughtful about making them. I can't describe just how little choice I have in my current situation; I do the disability paperwork how they want it, when they want it, or-- nothing. There's no changing jobs because I can't do a job. Even cobbling something together like attempting to full-time house or farm sit isn't possible because most people's houses are scented, and most farm sitting probably requires more than my body has in it.

I keep pretending I can keep the pigs but it definitely does make a big difference to my daily life to feed and water them. The birds are easier, but the pigs are really destructive so I need to be way more on top of infrastructure. But, yeah.

It's working on spring out there though. One daffodil is inexplicably coming up in a bare patch. The sorrel is spiking its first leaves up through the snow-- I guess that means it didn't get eaten by voles over winter, which bodes well for my whole herb garden. Buds are swelling on a couple things, dangerous with -11 forecast overnight soon but they have been moving that same forecast back one day at a time for something like two weeks so who knows.

I super forgot what else I was going to write, except that generally not being in fight-or-flight from PDA like I was for the last couple months is pretty good, and there's not quite enough ground revealed yet to garden but it's coming.

Am I in a bad mood because:

1) I think I haven't had a conversation with another human just for pleasure since before christmas

2) More and more things are becoming monetized and people seem to view this as a triumph since more people can pick up more side hustles, instead of viewing it as an insidious intrusion into normal human activities

3) Ecocide

4) Bombing infrastructure necessary for life

5) I don't want to read the books by other authors about Agatha Christie's characters but they keep being recommended to me

6) I probably can't do an 8 day workshop on soda firing and may never be able to again but I want to

7) New meds are doing bad hormone things

If 7, I should do something about it. Realistically I should do something about all of them, but they all require a different kind of response than 7 and maybe 1. I don't think getting a t-shirt made that says "useless eater" is the way forward on any of them, I guess.

I really do want the luxury of being able to crash out because of doing something for pleasure, though. It's a different feeling than wanting to do something but not being able to because I can't work. I really did live a lot at the edge of my ability.

Yesterday I stacked the last of the wood that isn't embedded in the driveway ice flow, and ordered another 3 cord for later this week or next week. Maybe I should have done pottery. Maybe especially I should have called someone to talk. I'm back to being a morning person again, though, and there's no one to talk to during my little windows of energy. Or something. Maybe that's just my excuse and it's just 7) above.

I've played this "which one" game all my life and I'm tired of it.

The second thing I noticed about the medical clinic was that posters on how to access the patient care quality review board were in every room. It worried me some, but I was so hopeful. This medication has a chance at improving my quality of life some.

My gynecologist (the prescribing specialist) and I agreed that I should make a follow-up visit with my doctor every week while the medication ran its course. Because it's a one-month injection, if it went badly for my mental health there are limited things I can do to pull out of the whole scenario on my own. And PMDD is the closest anything's ever been to killing me, so I treat it very cautiously. I do not want to die.

My doctor agreed too. The meds she'd given me for my gut had helped: less pain, less mess, more functionality. A B vitamin injection had helped with the neuropathy in my legs so I can lie more comfortably in bed. I like my doctor. She read the instructions on the kinda weird shot carefully, made it up (it needed two components mixed together inside the syringe) and administered, told me what side effects to come directly to emerg for and that I should come if I had any doubts, and wrote out a note for the front desk to make the weekly appointments.

The front desk point blank refused -- there were no appointments with anyone, but I could come as a walk-in on one of those days. When I mentioned that I couldn't actually sit and wait in a walk-in clinic, she changed the subject. The nearest appointment she would give me was in March.

Now, this shot lasts a month. I got it Jan 19. The next one will need to be administered Feb 19.

The front desk person was new -- they always are, there is a lot of turn over and I think half the time they are deeply under-staffed? At any rate they rarely answer the phones and there's no message service and of course no email, so one assumes there are supposed to be enough people to actually answer the phones anyhow. This one was not great with customer service for sure, telling me they'd "give her shit" if she did xyz and narrating that she was looking through each doctor's availability as if it was a great trial to her, even though presumably it was her actual job.

I'd already taken the email of the quality review board because when they put me in the room to wait for the doctor, the attendant went in and forwarded the roll of paper on the bed but didn't wipe down the chairs -- I'm not sure if that's supposed to be normal procedure, but I'd always assumed they wiped down the chairs in the rooms between sick people. They definitely did not wipe down the chairs in the waiting room, and I avoided one with a bit of a smear on it, but since it's always occupied I figured they did that periodically.

I was, of course, the only person with a mask.

Luckily the shot didn't do my biggest fear, which was immediate and intense suicidal pressure. In less than 24 hours any assumptions I make about how it's working will be jumping at shadows: I'm observing every single flit of thought, emotion, and behaviour.

These hormones have drastically changed everything about my life experience cyclicly in the past: they make me want to clean or lock me in bed, make me happy and hopeful or pessimistic, tilt my preferences towards interacting with only strangers or people I know well or no one at all, flood me with anger or with love predominantly for days at a time, change the foods my body can tolerate and the ones I want to eat or whether I want to eat at all. I went into that shot not knowing who would come out of it, and I still don't know. I don't know who I'll be tomorrow nor who I'll be when it settles out. Of course I'm curious and concened. Of course I'm watching, like anyone would watch a partner they'd just met yesterday for their arranged marriage.

I'm observing, not measuring yet, because in a month I'll be making the decision: do I do this again or go back? And three or six months after that: do I have surgery to make this permanent? The shots are expensive, and they're a trial to make sure having my ovaries removed is a reasonable choice. I guess I'll need to maintain them on a waiting list too.

And the problem with all this observation is that it's really skewed right now by having no access to reasonable fucking medical care. Gynecologist was very cautious about making sure I had follow up appointments. Doctor told them to make them. And I do not have them. I do not even have the ability to get my next shot on time through the clinic if it turns out great. My options are to go into emergency, which I might be able to tell if it's open or not because some random guy wrote a program to tell whether different emergency rooms were open or closed to due lack of staffing, the actual medical system is "working on" making one themselves.

The point of having the doctor's appointments for follow up was threefold: to catch things before they were emergencies, to allow a better access to the gynecologist since my doctor has a direct channel, and to have something in place so that if I went into the kind of deep depression where it's hard to do anything then going in would be a default and easier than doing nothing until I died (especially calling a switchboard that doesn't answer the phone or have an answering service as if it were the mid-nineties, or go into an emergency room that may or not be open and explain that I'm having a mental health thing that's a known hormonal thing and there are experts on this and what to do about it and be told that it's beyond their scope to prescribe changes in lady's meds).

I feel defeated (side effect of the medication can include "discouragement" which is accurate but maybe not the med's fault) and caught in wanting to just try planning for anything even less, since yet again the system (though not my own doctors) clearly want me dead.

So is it working? I sit like this for a month, then theoretically start peeling off some other meds once I stabilize here. I gather information. I look at every single thing that occurs in my being and try not to over-interpret it. Am I finding it harder to do things like get out of bed and get ready for bed (those go together in my life, I need to rest to be able to brush my teeth and have a shower)? Am I feeling a little more emotionally stable? Is this normal anger for the situation or abnormal anger?

Anyhow, I'm going to try and log what's up this month to help make the decision. I wanted to get this down because I want to contact the patient care quality review board. And I need to call my pharmacist and ask if he's allowed to give this shot since I don't have doctor access.

But of course before I do any of that I need to rest for a couple days.

In the whole PMDD and disability paperwork mess (I got rejected because the gov says their notes suggest that with treatment I should be able to return to work! Nice of them to I guess know what I have without telling me?) I forgot that I'd asked my doctor for stomach meds. One is a proton pump inhibitor, which I'd had before (and felt truly not-nauseous on, which was impressive) and one is a smooth-muscle relaxer. The latter I think she gave me because it's used for galbladder attacks but from what I can tell my gallbladder is normal (they did an ultrasound which I can finally access online) but! it super reduces a lot of my gut pain and other weird stuff in there. Things still *feel* weird but they're just much more livable... if I reduce the dose substantially from what she gave me.

So that's all very interesting and maybe means something. It's funny, having been with Angus for those years, now I feel like I have a weird malevolent thing living in my guts too.

Got my covid/flu/vit B shots all in the same day. Spending a couple days sleeping to recover, and my watch that measures things says I'm using as much energy as if I were ultra stressing and/or standing on one foot bouncing gently the whole time.

STILL dealing with ghosts of PMDD, which flare up with any outside world contact. I really would just like to crawl into a hole for long enough to forget the outside world exists, especially with no garden to distract me. People are impossible. And have my gyne appointment today. Oh well.

Seems like in Canada we can get private hormonal-competent gyne care for $300/appointment plus med costs if we don't want to wait in line for six months to a year. Unsurprisingly, people on fb groups for this stuff rely heavily on chatGPT for medical advice. What a fucking mess.

Two days back on pills. Really a very surprising amount of pain. Weird to think I'd been used to this only a month ago.

Second snow is happening. This one may stick. The first is pretty much gone. Josh canner up and we made kimchi and sauerkraut, hung shelves in the kitchen, and brought wood in from the satellite piles into the woodgreenhouse. The rebel hen who sleeps there was distressed. I'm still bringing a bit more in.

Seed swaps need to go out today. I also need to handle some fundraiser mugs and call the gov disability people to see if they've got their medical info from the insurance company yet. Also this week need to do a disability update to the insurance company. COVID shot is scheduled toi. This is too much for the week but it all needs doing.

I hurt and I don't want to drive my truck in the heavy snow before the ABS system is fixed but here we are. Maybe a bit more rest first.

Still happy to be alive. It's so improbable, all things considered.

Every once in awhile I cycle through thinking about how, in order to be considered properly disabled, one needs to perform misery about it. I think I'm generally resistant to performing the emotions I'm supposed to, and I'm acutely aware of the difference between difficulty or discomfort and unhappiness. Luckily this hasn't so far meant starvation or homelessness for me.

More than a week's break from the pill so far. Easy, sharp, long-lasting headaches and I can see how the ghosts of danger are going to slowly come back, but there is so much less both pan and discomfort in my lower torso that I'm going to ride this line a little longer.

Muscles sludgier than normal. There's so much to do in fall to get ready for the real cold, and I'm always behind. I've been starting the very slow, multi-week process of cleaning the house to get ready for Josh, that definitely doesn't help.

I planted more seeds last night. Herbs: chervil, fennel grex, summer savory, sage, thyme, that sort of thing. Also some sunflowers. One flat of seeds, with another of melons and another of cucumbers to go, I think.

It's amazing not to be able to remember all the seeds I planted only last night. I have no ability to inhabit that space and time, to access what happened. I used to always remember plants.

I don't know why I'm planting them in some ways. It's a habit of hope over the years but I can't look into the future and see planting or using them like I used to. It's a habit of hope that creates a feedback loop, though, pulling me forward into the world where the seeds sprout and where I'm picking leaves for salads and scrambled eggs.

There's no hope in me right now. I don't have the energy.

I'm used to running out of energy and letting everything release, relaxing back and knowing I did my best and savouring the emptiness of impulse and mind that comes after a push. That's not happening much right now.

( Med update and sui )

I can definitely deal with my body doing all sorts of stuff. I can handle working lying down sometimes, cutting back on animals and improving my systems, working towards a more accessible house and lifestyle. I could craft a life around afternoon naps and even not operating machinery in the afternoons and evenings. I could probably set things up so occasional semi-paralysis is manageable. Even things like the photosensitivity/headache and less screen tolerance is manageable with shifts to routine. And I'm already doing so many workarounds for the memory thing that many folks likely don't notice.

It's really hard to have this loudspeaker in my head telling me I shouldn't live, though. My first priority is that. And I'm not sure whether I'm relieved or not think there might be a long covid aspect to it.

So I'm planting seeds, which I can do on autopilot, pushing back.

I scavenged a bunch of sliding doors from the dump the other day for a greenhouse. I'm not sure if I'll split the double panes apart or keep them together, but it's a ton of glass.

I'm continuing the hunt for a housesitter since the one I had fell through, for May and for pagany stuff in August.

I'm making that doctor's appointment to get time off so I can do all of that without wheels constantly falling off my responsibilities in all directions.

Once I've done that maybe I'll even be able to start planning the garden.

It feels good to know I have more seeds in the ground.

Taught the new pottery tech to take the specific gravity of glazes yesterday. I had figured it out by reading about it. She had been given a handout and didn't understand it, by someone who had never done it and I suspect didn't care to understand it. I also gave the tech the link to the "for flux sake" podcast which goes into a bunch of nuts-and-bolts stuff around the practical parts of glaze chemistry and running a studio. I wish there were more pottery podcasts like that and fewer "meet this potter artist in an interview and learn about their inspiration, how they started, and how they use art words". Like, I'm not opposed to having those, but there are roughly one to two hundred hours of that kind of podcast for every hour of practical stuff around how to make clay or glazes do things.

We also did a bunch of glazing with the new pottery glazes, and I introduced one of the members to websites where people layer and posts pictures of premade glazes. I don't think she knew that premade non-underglaze things existed. It's fun, I'm pretty sure she's also on the special interest train because she says this stuff lives in her head.

Apparently the new tech can't mix glazes because of her asthma, and she doesn't yet know how to run the kiln, so I'm coming in this Wednesday to run the kiln and... well, they'd likely like me to come in the next weekend to mix glazes but 1) I've been busy too many days in a row and it's causing my body to malfunction and 2) Tucker will be here and I want to spend time with him. So, I'll trust that the folks I mixed glazes with before, volunteers, can do it again if they want glazes.

Workshop last weekend went well, people got to take home plants and craft plant markers and folks chatted and had a good time. No one mentioned my mask -- I was the only person masking in the building -- so we'll call that ok too. Next workshop is kratky lettuces, I should get some started as a demo.

cw sui
( Read more... )

I also continue to lose capacity, especially if I don't spend a couple days a week lying down. I think it might be time to talk more about this with my doctor. I mean, I don't know how or what, but I don't think we've found the solution. Same questions as always, is it "just" autistic burnout, is it some sort of post-covid post-exertional malaise thing, is it some random autoimmune thing that all have the same vague symptoms, who would even know to rule these things out? I'm starting to get a ton of ads from everything from psychiatrists to physios to whatever else to "help navigate the medical system and bring back functionality" and I hate the idea that our system is built so folks who are least able need to pay to navigate this. I'm very lucky to have a job where I can functionally slack a bunch if I need to but I can't do nothing.

This last thought brought to you by trying to type this morning with arms that felt like noodles. Kind of ironic that I finally have community in this town, both a garden club and a pottery club, imagine that! but that my body is just kind of not having any of it.

They say this stuff is not supposed to be addictive, however, when I take it and for the day after (sometimes a day and a half after) I can generally do things like walk up stairs without randomly feeling like I might die (say 3/7 times or something like that), I can breathe without it feeling like too much work, I can often think clearly and remember things (these are linked; it's hard to think about something when you can't remember the whole thought) and even do chores regularly.

Downside is that after that time I return to not having energy to do anything and spend a day in bed unable to think. Also my period and PMDD starts to kick in.

This is my first time trying two days in a row, three days off, and now one day on again. I think some of the PMDD lability is easier to control, I guess it is an energy-draining skill like anything else, but we'll see. I've been working from home and avoiding social stuff so many of the tests are easier.

Oof.

Okay, something which cancels out the PMDD moderation is not going to work.

Dammit.