Constellations

Dreamwidth! It's been three months, oops. Because I've been wildly busy? Not really!

I did go to the San Diego zoo, mind you! Speaking of wild. Owing to a scholarship from Fiddlars Need Sunshine, Amy and I went to san diego and stayed in the awesome umbrella / swim club hotel we stayed in, hmm, 7 years ago? Only this time I wasn't puking sick! I was migraine-y as heck, but that was actually a big improvement, like, I actually got to go swim in the amazing palm-tree-bedecked pool this time. Also such zoo wow very wildlife much snake. Amy went out to a fancy dinner while I lay in the room in the dark, and then she brought me home take-out, a rose, and described her meal in pornographic detail while I ate. This is pretty much the ideal migraine hot date. Later, a return to the romantic laundromat we also visited 7 years ago, because of the puking part. ("The Laundry Room! Every Wash Is San-O-tyzed") This time it was just regular laundry for old times' sake. ROMANCE. Greg just about fell over laughing when I told him about our romantic laundromat.

So, erenumab/Aimovig, the fancy new hotness in migraine drugs: alas, an $1850 bust in my case. I did the three months, it did jack doodly. It's almost a relief that it was so ineffective; if it had been partly effective I'd be agonizing over whether to continue paying that much for it or not. As it is, nope. Oh well. 50% of people respond; it was well worth trying and I don't regret spending the money, as ouch as it was to my bank account. (Although I got a heck of a good tax return with my over four thousand dollars of medical receipts for the year. Being sick sure ain't cheap. Well, being sick and having a child with teeth.)

That's about it for treatment options right now. In two years ish there'll be another drug with a different CGRP mechanism, probably, and then in 3-5 years two more new migraine-specific drug classes are coming, ditans and gepants. Hee hee gepants. For right now I'm trying going off divalproex again, to see if it's still doing anything - I'm at half the dose now and it doesn't seem to make a difference, so. If I can get off that it would be nice; the pills are huge (I crush them, but it's a lot of powder to choke back) and that's the drug that's giving me this %!$#@#$% clown hair. I am SO CLOSE to just shaving it all off, but if I wait it out I know the weight will straighten it out some, especially once I'm off the drug and my normal hair starts growing in. I gave Greg the deciding vote and he says I should keep growing it, so hair safe for now.

I may hop back on the drug merry-go-round and try second drugs in drug classes I've already tried. It is possible something will help, just not super likely, since I've tried a drug in each of the other classes before. Something to do for when not doing anything starts to drive me nuts.

In the meantime I'm trying to make my peace with "when nothing works, do nothing." It's good advice. And I've tried... wow, I just counted, 31 drugs. That's a lot.

I've been approved for CPP disability pension! This doesn't make a lot of practical difference in the long run; it means the feds are paying my monthly cheque instead of the province. However, it does mean I got backpay from them for the period from which I was deemed disabled until now, minus a four month deductible, which was a nice chunk of change, and I am using half to do something boring - either pay down my mortgage a little bit or start a registered disability savings plan, depending on an even more boring decision to come down from the tax agency - and half to be a travel fund for this year, which did not previously exist in my budget, 'cause welfare: not actually a lot of money.

ANYWAY this means Greg and I are going on a train trip! He so, so, so often has to deal with sick mama, exhausted mama, mama who can't take you to the park, mama who has to cancel fun things, cranky mama who is in pain, mama who needs you to play silently, etc. So priority #1 for travelling was Mama & Greg are gonna do something FUN together. I gave him the choice of Disneyland plus Grand Canyon plus Amtrak trip across the US, or VIA trip across Canada plus Whatever's In Toronto. The deck was kind of stacked there, but those two trips actually cost the same; VIA is hella spendy compared to Amtrak and flights from Vancouver to Toronto are not ever on sale because business travellers do that route every day of the year so they can charge whatever and still pack the planes full. But to my considerable surprise he picked VIA across Canada, so woo, The Canadian, here we come, end of May!

Will mama survive 4 days in a row on a train with a rambunctious 8-year-old and no wi-fi? WE ARE DOWNLOADING A LOT OF MOVIES AND APPS. And they have kids programming of some kind, there's at least one station stop a day where you can get out and run around for 30 - 180 minutes depending, and let's be honest, he's 8 going on 80 and will probably have talked all the retirees aboard in to doing crosswords with him by the end of Day 1. We're gonna fly to Toronto and take a day to do Legoland and whatever else he's in the mood for, maybe the aquarium or something. We're going to stay in the old-school rail-baron-era Fairmont Royal York, one of the fairmont chateau-type hotels like the Frontenac or the Hotel Vancouver. It's across from the station because rail barons. It turns out it's not that expensive to be a rail baron these days! The neighbourhood has changed I guess or maybe I just got a sweet internet sale, not sure, but it was like a third of what the Hotel Van would be. Score! I remember staying in the Château Frontenac once when I was about Greg's age, and thinking it was so awesome; I hope he digs this too. Then we'll take the train west, so that delays accrue on the Vancouver end where it doesn't matter if we're late, rather than the TO end, where it could screw up hotel reservations. VIA beds are way more comfortable than amtrak beds in my experience, but their delays are just as epic, 'cause here as in the US, freight trains get priority.

I'm excited!

I'ma also get to visit some of my people in the US this year, and thanks to friends letting me mooch hotel space and cheese, I will get to go to worldcon in Dublin, which is pretty epic.

So, yay pension! I was a bit surprised to get it on the first try; the reputation is that you basically have to be dead to qualify. But I think I'm just kind of numbed to how disabled my migraines make me. Like, ooh, I feel fine! As long as I stay in a dark room and don't move my head, do the bare minimum number of chores and rest extensively after, leave the house once a week or maybe twice if I sleep 18 hours the next day, and take painkillers around the clock! That... okay, that is not fine. That is significantly impaired. I am disabled by migraine and it's not ambiguous at all. But self-gaslighting, heck of a drug, y'know.

I am still learning russian! Besides plugging away at duolingo, I recently got in to the Fluent Forever method, which has been AMAZING for my pronunciation and my ear. I do soooo much better at the "type what you hear" questions on duolingo now, after less than a week of using the FF trainer, it's wild. Emboldened, I ordered some russian books. English + Russian facing pages edition of Akhmatova: ha ha ha NOPE NOT YET. (Still reading the english side, though; fuck she writes good poetry. Cry in to your vodka good.) 20 Easy Russian Stories For Beginners: heck yeah, I can haltingly read and understand the details of Sveta and Marina's family! Tomorrow it's their first day at school. THE SUSPENSE. I'll keep you posted. Word on the street is that there might be 8 boys and 12 girls in Marina's class, but you know how unreliable online spoilers are.