She may be old (18, we think) and grumpy and possibly losing object permanence, but she's still a good jumper.
She may be old (18, we think) and grumpy and possibly losing object permanence, but she's still a good jumper.
Original (or) Fandom: Original, Too Old For Neverland
Rating: G, Gen
Notes: Too Old For Neverland is an Urban/Suburban Fantasy 'verse that focuses on not!Wendy and her quest to save children from not!Peter Pan. For a while I thought this was a Peter Pan AU, but the more I looked at it the more I realized it had no real ties to the source universe-- so I spun it off
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The Order of Truth's Aeon Priests have resurrected our May 2014 Numenera Bundle, featuring the tabletop science-fantasy roleplaying game Numenera from Monte Cook Games. A billion years in the future, explore the Ninth World to find leftover artifacts of nanotechnology, the datasphere, bio-engineered creatures, and myriad strange devices that defy understanding. The inspiration for the recent Torment: Tides of Numenera computer game from inXile Entertainment, Numenera is about discovering the wonders of eight previous worlds to improve the present and build a future.
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Like last time, I was transferred from my wheelchair to a gurney. I had to wait a couple of hours because there was another person getting Spinraza ahead of me. I guess they're getting a lot more interest from people with SMA.
Around 11 o'clock they wheeled me into the room and transferred me to the cold hard table they use. They positioning me on my left side again and then I waited 10 or 15 minutes for the doctor to show up. Normally this isn’t a big issue I’m used to being patient and waiting for doctors, but laying on a flat surface is painful for me. My diagnosis causes contractures in my joints especially my hips and knees. So I don’t really do flat surfaces very well and making the surface hard doesn’t improve the situation.
Eventually the doctor showed and they finished positioning me and started taking pictures to decide the best site for the lumbar puncture. After 30 minutes or so they numbed me up and started poking. Now I want to be clear the staff at Stanford are really great to me. They were very thorough and professional this time. I just apparently have a uniquely fucked up spinal column. Even though they saw what looked like a very promising site for the puncture they kept hitting bone. Around an hour and 30 minutes I was starting to get in real pain. I had been in pain since they put me on the hard table and I was able to manage it but at this point I was starting to feel like couldn’t really take much more. I was even neglecting to report some pain from the puncture because it just didn’t really hurt as much as the rest of my body.
My shoulders ached, my hips hurt and the ribs on my left side were killing me. The doctors kept asking me to hang in there and Connie asked to give them five more minutes. They pulled out the needle, changed doctors and took another try at a whole new area of my spine. (After having made two attempts higher up on my back.) After another 30 minutes the doctor said she was very. very close and to hang in there. I tried for another 10 or 15 minutes and reluctantly pled uncle.
I was in agony. I was sweating. I was exhausted. Frustrated with myself and the universe for screwing around again. They rolled me on my back and eventually got me into my wheelchair. My worker, who came with me, had an appointment for her doctor at 2:30 in the afternoon. We hadn’t thought we would be at Stanford this long, but once I was done we rushed to the car and tried to get to Highland as soon as possible. We did manage to get her to the hospital about five minutes late and she texted us later to tell us the doctor saw her. So at least I didn’t screw her day up.
Connie said she would try to work something out. You see this drug has to be administered on a strict schedule once I had my first dose two weeks ago I have to have the next two doses in intervals of two weeks. However it turns out that I have one day leeway. I must get my next dose tomorrow or I think I need to start over again. I’m not at all sure I would get the approvals. I am the first person with Medi-Cal and Medicare who has been approved for the treatment. I was supposed to be the test subject. Connie said she'd call me later and she did. I have an appointment to try again tomorrow.
The problem is tomorrow I was supposed to have my caseworker do their annual review for my IHSS (which funds my personal care workers). I have never had to reschedule before but I had to reschedule in order to go to my original appointment. We rescheduled for the following day which of course now I can’t make. So I need to cancel again and hope they won’t be too upset.
I feel like I failed. I know intellectually I didn’t, but I think of myself as being pretty stubborn and I’m proud of that. Now, I gave up and I can’t help thinking I should’ve tried to hang in there a little longer. I really hope these treatments get easier or I don’t know how much of it I can take. Wish me luck tomorrow. And hope my caseworker doesn’t decide to screw me over.
Been and will be out of town a lot. I had two busy stretches in a row that were 5 weekends travelling out of 6 (from mid May: Convergence, Saint John, western MA wedding, camping NH), then 5 weekends out of 7 (Tough Mudder, camping NH, business trip, Fantasia, camping VT). I've been spending a lot of hours training since Tough Mudder fell in there (it felt easier this year, a lot of the obstacles were scaled back, like only 1 Berlin Wall, 1 Block Ness Monster, and Arctic Enema had less ice and a gap I could squeeze through w/o going under water again) and I have a second one coming up in < 1 month.
I just got back from a week long business trip to London Ontario where I got to catch up with my high school friend L, while the other member of our trio, W., was house sitting for me in Boston (our trips lined up perfectly badly so we didn't see each other *grump*). Memorable training moments for me: pretty much kept up with L during an hour long park workout (she's in the OCR world championships, and went on to place first in our age group at her race this weekend), and finally (omfg FINALLY) completed the Fitocracy Athena Reborn quest. The 115lb barbell back squat has been my nemesis for *years*, turns out that all the skiing and running and kettlebells got me past my 100lb barrier for a PR. I'm super happy about that. :-) The hotel gym was awesome, with both KBs and a barbell set up, and it's got me reinvigorated to get a barbell set up for my basement.
Then I spent my rare weekend at home catching lots of different kinds of
Friday: flew home in the afternoon, then went from the airport, home to drop off suitcase, over to Brighton Music Hall for a sold out show of Dragonforce. Loved them in Austria, it was super fun to see them again with that whole crew plus some more local friends.
Saturday I spent decompressing and doing all the laundry then made a bit of a last minute decision to attend an opera fundraiser party at a cool loft space. Oh, man, being < 20 feet from an opera singer as they belt out arias is intense. I also got to dance a lot to one of my many favourite Goth/Industrial DJs, and ran into a guy who works in my building, and also pushed past shyness to talk to lots of new people. I had to bail when the heat got to me as more people arrived.
Sunday was book club, a clothing swap (new corset! and house deco bits!), then heading to ONCE to see an alternative band from Beijing, RE-TROS. Super small crowd, maybe 30-40 people, but a rockin' show, their influences of Bauhaus and Joy Division were on full display and I was bopping along to the music the whole time.
I'm working an extra hour every day this week so I can take off Friday afternoon to go to Montreal for Fantasia this weekend (flying back to maximise time there with no time to take off). Then a camping weekend in VT. Then a weekend off before Tough Mudder 2 lands. My last event is Sept 8 then I can scale back a tiny bit on training, but I'm buying a MAX pass this year and will need my legs to be in great shape for all the skiing. :-)
House wise: have fans sitting waiting to be installed (note to self: call electrician again), outside work got done while I was away just waiting for the invoice, have to fix my bathroom cold water tap, finish painting that bench, and replace the stupid refrigerator ASAP (I pulled it out and vacuumed the dust build up, but the compressor is going). On the upside, my place is super clean and organised since I got it in shape for W. to stay.
This collection of stories focuses on the experiences of Chinese immigrants in both China and America. They are loosely connected; characters from one story will be mentioned in another. These people do not have the nice house of the family in ‘Fresh Off the Boat’; the family in the first story at one point are sharing one room with 10 people; the room is just mattresses on the floor. Not to mention the cockroaches…. Other stories have the children left alone to take care of themselves because bother parents are working; in one, sexual exploration turns into sexual violence. One man whose lives in poverty with his wife and child has an endless string of mistresses. A grandmother claims to have breastfed her grandchildren, she loved them so much. A mother demands to be loved more than her husband, putting her child in an intolerable bind.
These are really grim stories. I had trouble finishing the book. I don’t demand all happy endings and unicorns farting rainbows, but there were no bright spots in these stories. Still, there are moments of laughter. Zhang writes with black humor that doesn’t lighten the mood but does make it survivable. I think I’m not sophisticated enough for this book.
After the aesthetic exuberance of Odessa, Riga seems much more restrained, even dour. It's impressively old (founded in 1201, and there were settlements well before that) and lovely, but also more orderly, less lively, less organic. And, of course, much more expensive: welcome back to Western Europe.
This said, it's gorgeous and fun. Everyone speaks English here, which is relaxing. I don't mean this in a chauvinist way; mainly that I don't need to bother Anya to translate everything. Actually, where we're staying in the old town, it doesn't seem like anyone other than people working here are from here; it's pretty heavily touristy.
Which also means that it's incredibly easy to find vegan food. Including an entire vegan restaurant. I was like, "GIVE ME ALL THE PROTEIN."
The most important story I learned today was this: There were two powerful guilds in Riga. One was for skilled craftsmen, and admitted every eligible craftsman who applied to join. The other was for merchants, and only admitted Germans. A wealthy merchant from Riga applied to join and was rejected on the basis of his nationality. Accordingly, he built himself a giant fuck-off house across the street from the guild building and put black cats on the roof with their asses facing the building, as if shitting. The guild immediately sued to have the cats removed, but because lawsuits take time, WWI broke out, and no one gave a shit about cats' asses. The cats were mysteriously removed anyway in the 1920s, and replaced just as mysteriously in the 1950s, this time facing towards the guild, as it is now the home of the Riga Philharmonic, and no one has any quarrel with them.
( photodump )
Saturday was also a regular CheeseQuest day with hathhalla and ser_pounce. Given the cool weather, our lunch feast consisted of a pumpkin gnocchi and Nova Scotia brown bread. The cheese feast included fried saganaki and halloumi, havarti, maasdam, gorgonzola, Dutch smoked, and two not-cheeses, a faux cheddar and "tree nut" cheese, which are quite tolerable. I was rather taken by the Devil's Corner pinot noir that our guests brought over, light but tasty and with a brilliant ruby colour. After lunch was the second session of our historical-fantasy Dungeons & Dragons game, using the very different 4th edition rules in the setting of Charlemagne's rule. The game went very well, everyone plays up their character ethno-religious background and character class, as they cleared out a old Roman-Germanic temple in Freisland haunted by Wiedergänger.
Sunday was also a gaming day, this time with my own game of Eclipse Phase. This session involved the PCs engaging in a short-case to an autonomist morph resleever on one of Neptune Trojans, then taking a stealth craft to intercept an Ultimate scout ship en-route to Eris. There was an almighty gun-battle that followed which eventually saw the PCs successful, and partially courtesy due an inside agent providing assistance at the last moment. After that was the challenging process of psychosurgery and the literal merging of minds. More on that for the next session. Appropriately I've started reading the two books entitled Dungeons & Dragons and Philosophy (one published by Open Court, 2012 and the other by Wiley Blackwell, 2014)
Anya is like, "This hotel is familiar."
I realize that this is of interest to probably no one else reading this (sadly it would be if I were cross posting to LJ, where there is a teeny community for such things), but I'm staying in the hotel where they shot Seventeen Moments of Spring (as well as parts of the Soviet Sherlock Holmes.) And if you think I'm not geeking out like mad over this, you don't know me at all.
Fortunately, Anya is the person who introduced me to the series so she is also geeking out and is equally pleased that Stirlitz is watching over the beds in our room, judging whether or not we have adequately sacrificed and fought for the cause of anti-fascism:
Here's the view out the window:
(If you have no idea what I'm talking about, here is my screenshot recap of Seventeen Moments after I watched it and decided that everyone needed to see it. Minus the image hosting, unfortunately; I'll need to fix that at some point.)