The medical system

A week ago I had an appointment with my PDA counselor. The idea was to sort through my symptoms, medication, figure out what was resolved and what wasn't, what I should pursue and what I shouldn't, what my next steps were, etc. The whole thing is honestly pretty overwhelming.

So we spent the hour on that, and during that hour she mentioned that autistic folks are super prone to autoimmune conditions. I knew this. We're hugely gender diverse and, er, ability-diverse? Hypermobility, fibromyalgia, etc. I was talking about my skin symptoms that I'd had for so many years, and about the tiredness, at various times. She mentioned MCAS. Now, I'd looked at MCAS way back and hadn't really thought much about it. I was on allergy pills for my skin stuff for a long time, though, and maybe that was correlated with better physical welll-being?

It's an easy one to test for, though. Take allergy pills. There are two kinds of histamine blockers and over the counter allergy pills are one class. Those mostly deal with skin, airway, etc. There's a second class that I think needs a prescription and it deals with GI stuff. I have both sets of symptoms so--

I bought allergy pills and started taking them a week ago.

My tunnel vision/eye stuff is functionally gone. My memory is much closer to normal. My mind doesn't feel like a frozen ten-ton molasses blob I'm trying to roll uphill. I feel energetic in the mornings.

I still get super tired and need naps, and I'm still a little slow off the mark, but I've been going outside and doing things. My heart still pounds kind of erratically (like one out of fifteen times I walk up the stairs to my bedroom, or one out of seven times I carry the feed buckets) and my muscles feel slow/achy, but I don't feel like I'm hauling dead meat around.

This is basically amazing.

Now I'm thinking, what if the H2 histamine blockers remove my GI stuff? I've had that forever, it's mild enough that it's inconvenient but I never starve, but I remember waking up to stomach pain most days in high school even. That endoscopy I had last year wasn't conclusive. Low-level nausea is pretty common for me. I also don't know what level of discomfort normal people have, folks talk about things like indigestion all the time. So I've been accepting all this stuff as just normal, but what if it could go away?

They say as you get older things hurt more. A lot of this stuff has always been like car noise in a city: background, the brain usually cancels it out, no point in complaining, everyone deals with it and it feels like an inevitability. I don't class "normal stuff" as pain because what's the point? But what if, as I get older, I could have days without pain? Regularly? And not just without acute pain, but without the background stuff?

Either way it's amazing to be able to focus my eyes fully again, to be able to think my way through a sentence without having to reread it as I go because I've forgotten the beginning. I'm very curious about how the allergy pill impacts my brain function. I'd heard something about mild anaphylaxis, narrowing air passages or something, from MCAS. I can't find it now. Could that have been what's going on? Something else acting directly on my brain? I'm so curious.

Edit to add: I spoke too soon, it doesn't seem to be fully better but it does ebb and flow and it's less intense for sure

Good, actually: plants, pottery, and internet

People have been asking me how I am and I’ve been saying things like “good” or “excellent”. It’s been awhile! A couple counseling visits ago I said something like “is it even possible to give a straight, single, non-ambivalent answer to this? Like do neurotypicals have everything average out so they don’t experience both the good and the bad, but just a kind of middle mush?”

Last visit I said, “really good, actually.”

It’s important to laugh at myself when it’s warranted.

So here’s the stuff:

Garden: tomatoes are looking great and I’m starting to acclimatize them to outside. I never did set up my lights, but the thing about seeding so late is that daytime is starting to be warm enough to keep them outdoors as they’re thinking about stretching. We’re still getting freezes at night but they’re still in the “couple hours at a time in the shade” phase so I just take them out once it warms up. I’m thinking of repurposing my chick brooder for a mini greenhouse on the deck so I don’t need to haul in and out.

Meanwhile the apple seedlings are thriving, they’re outside all day and any evening there isn’t frost (only one so far). Peppers had poor germination but I did plant two flats so I’ll have enough to grow. I also had poor germination on ground cherries.

I started messing with the raspberries the other night. Started cutting out last year’s fruiting canes and cutting the east fence one into rows, leaving a stub so I can dig out the extras.

Outside is beautiful but weird. Stinging nettles are coming up, rhubarb is up, sweet ciciley and apple trees haven’t budged yet. Favas are in the ground. The pigpen is almost dried out, it could almost be tilled already. The lake is lower than folks remember ever. They’re forecasting a big wildfire year for the whole province. Eep.

Pottery: so looks like we’re crystallizing into an actual functional group, or at least moving towards it, without me having to shoulder the whole thing. A previous volunteer, who burned out because she didn’t have help, seems to be back. The first kilnload of bisque is currently cooling down, I’ll get to see it on Thursday. We’re going to glaze. The plan is to meet regularly on Thursdays. Hopefully that doesn’t fall apart. I really do want to do a bunch of throwing until I can do it confidently.

Tucker/stupid/mystery: a lot of stuff is percolating on this one. My therapist suggested that what keeps drawing me back is that he’s unpredictable. Or, I mean, she said “mystery” and that’s maybe accurate? Which offers me the lens that his unpredictability throws me off in both directions: I appreciate not always knowing what’s going to happen, but I really struggle without any sense of certainty or agency in the relationship. I also feel stupid every time we go through the dance where he distances, I distance, and then he comes closer after I distance. It is kind of predictable, after all, and if someone doesn’t explicitly commit to me I feel uncomfortably ambivalent about my right to complain when they suddenly don’t act committed: on the one hand they didn’t say anything for me to rely on, on the other hand if someone does a bunch of stuff with typical societal meanings about commitment for years and then stops it was in fact fair to believe they’d go on as they had begun unless they said otherwise. Anyhow I’m chatting cautiously with him again. We’ll see how it goes. He tends to schedule himself pretty full and I’m not great at “I can only talk to you on Tuesdays for the rest of the year except when I’m too busy, then we skip a week”.

Willow: the basketmaking course was nice. I’ve harvested a bunch of willow, some from my property and some from the side of the road last time I drove the highway. It’s supposed to be harvested before buds start to open. I may have been slightly late? And just a week or two later it’s definitely too late. We’ll see if the stuff I got is ok for basketmaking or not when it’s done drying and soaking. I have a couple friends interested in learning too so we’ll see how that goes. I guess practice baskets are fine even if they’re not perfect.

I really enjoy the way the willow smells, and the way it scents my basement while drying.

Poetry:My friend did that wonderful poetry month daily challenge, and I’ve taken up a PDA-compatible “30 poems sometime in 30 days” challenge starting randomly on April 29th. It’s a real joy. I’ve written a backlog of poems to put out one at a time (I did write them all in the first couple days) and in the meantime that frees me up to write new ones without PDA last-minute pressure. Writing feels so good. Manifesting the inside of my mind on my outside is empowering-feeling. Also it’s neat to see what’s on my mind.

Well: my water pressure is a real problem. There’s also sand coming up through the system. I cleaned out a bunch of my little faucet screens last night; the kitchen water had completely stopped and I pulled maybe ¼ tsp of sand out of it, which fixed it. Apparently the sand is a big thing for everyone on my road right now, so for everyone on the couple layers of aquifer. We think it’s because the water is SO LOW right now, and I think on a karst system it shifts around very quickly. Anyhow, my washing machine is struggling – it’s the thing that uses the most water in my house right now, and loads are taking an extra hour or two as the machine fills up so slowly. I need to order a pressure tank and try to figure out how to put it in by myself or get a plumber to come out for an hour. The money is definitely hard right now and I’m waffling between the same sized tank (25 gallons of “useable” water, aka drawdown) or get one step larger (35 gallons of drawdown) to help protect me through power outages. Either way I may need to sell random stuff to make it happen.

Starlink: the provincial government said something about wanting broadband to every rural household in the province in 4 years. This comes 1-2 years after almost removing it completely from some remote communities, and after funding it being put in south of me along the whole highway of tears (which is definitely taking longer than they expected). My internet right now is a hub that runs on cell service, it’s very very slow but it’s reliable and it’s $90/month. It’s getting worse as the local cell towers decay (as with everything owned by businesses, they cut the nonprofitable stuff for small groups and focus on what makes money, which is not rural stuff). Starlink (and the truly awful satellite internet) are the only other options.

I hadn’t wanted to get starlink since there’s the $700 equipment cost up front and if the gov ever does get some other kind of broadband internet up here I don’t want to be stuck with the sunk cost fallacy keeping me on it. However… the other day I learned that starlink is offering its equipment to rural Canada, NZ, and Australia at a very very steep discount ($200) that makes it palatable amortized over even just four years. Soooooo… I’ve ordered it. I am not thrilled to be supporting the organization, I firmly believe it should be a government service, but my government is failing me here.

I am looking forward to making youtube videos again! I wasn’t able to upload them in less than 20 hours or so before. I wonder if IO can find a used gopro or something?
Anyhow, that’s a lot and mostly good.