Underground again

Sep. 22nd, 2017 09:51 pm
oursin: Sleeping hedgehog (sleepy hedgehog)
[personal profile] oursin

Which, given the weather - today was persistent drizzle rather than yesterday's chucking it relentlessly down - was a good idea. Salt mine, to be precise.

However, has been a long day - only just in from a Mahler concert - so any more detailed reports on touristic activities may follow at some later season.

Final loading dose... DONE!

Sep. 21st, 2017 04:45 pm
stonebender: (Default)
[personal profile] stonebender
I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication.

On September 5th, I received my last loading dose of Spinraza (Huzzah!). After six tries and four successful injections, it seems that I have learned how to advocate the best circumstances for success. Pain meds help in allowing me to stay on the table longer and the longer I can stay there, the more chances for a successful lumbar puncture. The pain meds also help with recovery. The first few times we tried an LP, successful or not, it took several days for me to stop feeling sore. I also make sure I’m not put on the table until the radiologist and doctor are ready to go. That way they have the most time to get the needle where it’s supposed to go with as little pain as possible. So although the last loading dose took a couple hours before it was successful. It was successful!

Most of the staff were new to me. I started explaining what needed to be done and the staff were paying attention. After a bit my morning worker started taking over just by saying things like, “Wasn’t Guy’s wheelchair parked over there and you brought the lift over here?” Basically, asking questions that clarified my instructions. After a bit it was fascinating to watch. She knew me and she has been through this dance with me several times now. She knew what had worked. So I let her take over the logistics. As usual, the staff followed directions and were concerned with my comfort.

I have been paying attention to any physical changes since the treatments began. I didn’t feel much at first. Except that my breathing is easier. I’m worried that the improvement is just a placebo effect. I want to feel like all this effort amounts to something. Seems like the beneficial effects of the treatment are so subtle. [personal profile] loracs and I will be the only ones to notice.

I’m really looking forward to the next pulmonologist appointment. Then I will have some objective evidence that I’m actually improving. Until then I keep racking up observations. Along with stronger lungs, [personal profile] loracs has noticed the grip strength in my left hand is stronger. I feel some strength in my arms, but it’s not like I can suddenly raise my arm above my head. It seems like I can gesture a little more. I think I have a little bit more motion in my right hand when I use my trackball. Nothing I couldn’t do before, but it seems like I can do it longer and with less fatigue.

After the third dose, I noticed that my neck seems to be stronger. Driving in the car is always a bit of a roller coaster ride for me. I can’t hold my head very well, so it flops around a bit. I try to ride in the car in a reclined position, but that cuts into the sightseeing. I usually alternate between reclining and sitting straight up. Still, my head flops around more than I like. I’m noticing now that I can keep my head up most of the time. I also noticed that I can lift my head off the bed if it is at a little angle. I can’t lift it from completely prone. I don’t think I could lift it at all before the Spinraza.

On the possible negative side, I’ve noticed some tension headaches since the fourth dose. They don’t last long and they could just be hay-fever. The pain is similar, but I notice it when I’m being impatient or a little pissed. I am not at all sure if this is related to the drug. That’s about all I’ve noticed at this point. I think I’ll be getting a follow-up appointment in the future. So they can see where I’m at and decide what to do. I may get some physical therapy. (So I can look buff.)

On the reimbursement front, I received one of those “this is not a bill” statements from Medicare. It seems to say that all the hospital stuff is covered, but it doesn’t specifically say anything about whether the Spinraza has been covered. It even says that Connie’s services are covered but nothing about the drug. Connie seems optimistic they will get reimbursed. I’m disconcerted, but I’ll cope. Thanks everyone. I’ll keep you in the loop.

Oh dearie me, this guy's got form

Sep. 21st, 2017 08:41 pm
oursin: Cod with aghast expression (kepler codfish)
[personal profile] oursin

Back in 2008, Gandhian pilgrimage that ended at Calais.

And his present (surely it is the same guy) simple life agenda has crossed my horizon heretofore.

My dearios, I give you I live a healthier life now I’m free of the trappings of modernity.

O, lucky old you, a healthy bloke with sufficient resources to undertake this project and pontificate about it. You are not just lucky to be 'born without any serious long-term health issues' - this is due to various factors including maternal nutrition and antenatal care, vaccination against common childhood diseases (even if he didn't get these, and I bet he did, he would have benefitted from herd immunity), i.e. the benefits of modern medicine and sanitation.

Also, I have no time whatsoever for anyone who dismisses other people's experiences of pain: there is a man who, we must suppose, never sat an exam while doubled over with period pain, or suffered a migraine. Not at all rare conditions. Your body is not 'always aiming for balance and health'.

And we observe that he has had a vasectomy... because one of my questions (among the many stimulated by the thought of all the technological advances that have made women's lives so much less arduous, which I remarked on when his bogosity first impinged upon my aghast gaze), wot abaht contraception?

Perhaps we might introduce him to the notion that being regularly flogged with a large codfish is a cure for pretentious woowoo?

(And do we think that his simple austere life is 'more work for other people', like the process that gets his handwritten ms - written on tree bark in berry juice, we wonder? - from his simple cabin in the woods to the Guardian website?)

Wednesday went underground*

Sep. 20th, 2017 09:19 pm
oursin: Photograph of small impressionistic metal figurine seated reading a book (Reader)
[personal profile] oursin

What I read

Finished Boys will be Boys, which was still very familiar although it is many years since I last read it. Wonder if Turner would really have liked to be writing something a bit more serious about matters of popular culture; and would have liked to be nerdish in the archives of the publishing companies, because there are sometimes wistful asides about the mysteries that might be solved thereby. Pretty sure this is where the very youthful [personal profile] oursin first acquired that apprehension that each generation disses upon what the young of next are consuming (whether print or radio or more latterly other media) as A Road to Ruin (I wish I could locate my copy of his Roads to Ruin).

Also finished The Witch of Syracuse: worked well, did not have that sense one so oft has when scattered short stories on a character/s are brought together of 'fix-up', but that it worked as a narrative arc. Also thought it worked well on the historical contingencies, nature of the deities, etc. (Very unfluffy Hellenic/Punic goddesses.)

Being somewhat smitten with travel angst, read various short things, comfort re-reads, etc.

Did read the novella Suradanna and the Sea by Rebecca Fraimow (2016): very good, even though I couldn't remember why or when I'd downloaded it.

On the go

Finally began Victoria Bates, Sexual Forensics in Victorian and Edwardian England: Age, Crime and Consent in the Courts (2015) - very good so far.

Also currently in medias res, Patricia McKillip, Kingfisher (2017) - very good, but my bar for riffing on/mashing up Arthuriana is set very high with Naomi Mitchison's To the Chapel Perilous.

Up Next

Dunno.

*Among other sights seen today, Rynek Underground.

(no subject)

Sep. 20th, 2017 08:45 am
oursin: Brush the Wandering Hedgehog by the fire (Default)
[personal profile] oursin
Happy birthdsy, [personal profile] sharpiefan!

Krakow is chilly and rather wet

Sep. 19th, 2017 09:08 pm
oursin: Brush the Wandering Hedgehog by the fire (Default)
[personal profile] oursin

This morning it was overcast and a bit cool, by this evening via mildly drizzly has become colder and wetter.

Nontheless, we have managed some flaneurserie around the Old Town, a visit to St Mary's Cathedral with its massive gothic altar, and several museums:

The Gallery of C19th Polish Art at Suikiennice

The Jagiellonian University Museum Collegium Maius

The temporary exhibition of 350 items from the The Princes Czartoryski Museum

Pharmacy Museum, Jagiellonian University Medical College

All of which leaves me rather too overwhelmed to say much beyond: that's a hell of a lot of old scientific instruments/apothecary paraphernalia, and dealers across Europe must has seen the Czartoryskis coming, with their interest in associational historical items (I would guess scamsters moved into this after the decline in fake relics?).

There was also (v expensive) coffee taken in a very plush place with numerous historical associations.

Place is generally heaving with tourists and tour groups.

Travel/travail

Sep. 18th, 2017 09:11 pm
oursin: Sleeping hedgehog (sleepy hedgehog)
[personal profile] oursin

Today has been mostly airports and planes - both flight AND connecting flight were delayed, so even more hanging about airports than anticipated.

Now fed and in hotel - serious lack of/unhelpful positioning of power sockets. But at least free wifi and brekkers inc.

(no subject)

Sep. 18th, 2017 07:01 am
oursin: Brush the Wandering Hedgehog by the fire (Default)
[personal profile] oursin
Happy birthday, [personal profile] auguris and [personal profile] fitzcamel!

Culinary

Sep. 17th, 2017 08:36 pm
oursin: Frontispiece from C17th household manual (Accomplisht Lady)
[personal profile] oursin

Bread during week: a loaf of the Khorasan (kamut) flour, made as per instructions on the packet.

Friday supper, Gujerati khichchari, very nice, even if yet again I put in ground cumin instead of cumin seeds.

No Saturday breakfast rolls, as we were using up bread before going away, so had toast.

Today's lunch: lemon sole fillets, seasoned and panfried in butter, served with Ruby Gem potatoes roasted in goosefat, garlic roasted sweet sprouting cauliflower and tenderstem broccoli, and padron peppers.

oursin: Hedgehog saying boggled hedgehog is boggled (Boggled hedgehog)
[personal profile] oursin

A pregnant woman working at a Queenstown ski field found a colleague had left a condom filled with mayonnaise and a crude note on her desk during a staff morale boosting event.

And okay, perhaps this is me being Very British Problems, but I'm fairly creeped out by the concept of

an event dubbed "woo week" where staff were encouraged to boost each other's morale using notes and gifts.

An event poster from NZ Ski encouraged staff to "Let those romantic and creative juices flow, to show your affections and/or appreciation for your woo'ee. "Whether you're single, married, defacto or other, woo week is fun for everyone. "You are assigned at random one person to woo in secret from 23-29th July," the poster read.

The ughfulness is terrific. I feel thar even short of the reported crudity, this has enormous potential for problems.

Who are 'we', here, exactly?

Sep. 16th, 2017 05:39 pm
oursin: Photograph of small impressionistic metal figurine seated reading a book (Reader)
[personal profile] oursin

Why can’t we read anymore?.

When the author complains that he barely reads four books a year, I think we should be told how many he was wont to read before he got addicted to the distracting dopamine rush. (I write here as someone who considers that her number of books read per annum has almost certainly declined: to something in the region of 200-300. But held fairly steady even when I was being an Award Judge.)

I also think that perhaps we should be told what kind of books he's trying to read: in which case, perhaps it's the particular what that he's bouncing off.

(Because honestly, there are times when I find myself bouncing off particular kinds of things, or just not finding whatever it is that will tickle my reading taste-buds. And maybe this is about general mood-factors, and not just the siren song of the digital universe.)

And, of course, I will never not be somewhat amused by the way in which Reading Books has become this culturally worthy activity, because I can remember when it was otherwise...

Friday five or so

Sep. 15th, 2017 02:06 pm
oursin: The stylised map of the London Underground, overwritten with Tired of London? Tired of Life! (Tired of London? Tired of Life!)
[personal profile] oursin

Should probably say that my part of London is pretty distant from Parson's Green.

***

Dept of Fortuity: when you see news of a book that you would be really interested in reading, at eye-watering academic press prices, even for the ebook: and in a day or so having a request from the very same press to referee a book proposal for them, in return for BOOKS to a value that would cover this and a bit more.

***

Dept of O tempora o mores: The Tatler guide to threesomes. If Sir Charles Dilke did do as alleged during a divorce trial, and suggest a 3some with a lady and her maid, perhaps had he read this he would not have got into the hot water he did.

***

Dept of, is this a portent? Rare white giraffes sighted in Kenya conservation area. Are there local tales of the dire consequences of hunting a white giraffe? In this video clip the mamma has a rather 'I'm ready for my close-up now Mr de Mille' expression.

***

Dept of, is this not the return of the prefab: Home sweet micro home: sleep-testing a pod for the homeless.

***

Dept of, so out of touch he's floating in the void: Jacob Rees-Mogg seems to think that the poor are put into the world in order to allow people to acquire merit through charitable activity. O that Simon Raven were around to excoriate him as a fictional character as he did his father.

(no subject)

Sep. 14th, 2017 03:18 pm
firecat: red panda looking happy (Default)
[personal profile] firecat
Saving to read later, Krebs's take on the Equifax security breach

https://krebsonsecurity.com/2017/09/breach-at-equifax-may-impact-143m-americans/

Did she even like his piano-playing?

Sep. 14th, 2017 05:38 pm
oursin: My photograph of Praire Buoy sculpture, Meadowbrook Park, Urbana, overwritten with Urgent, Phallic Look (urgent phallic)
[personal profile] oursin

I was mystified, and going 'what's your motivation here, luvvie?' by that guy who said he was playing the piano in a Bristol park to win back his ex and would not stop until he had.

Which seemed to me, along a spectrum from 'aw, romantic gesture' to 'equivalent of holding breath until turns blue', a lot closer to the latter.

Do we not think when he said

"The social media reaction turned it very quickly into something that would cause the one person I didn’t want to hurt embarrassment and pain.
"That was the last thing in the world I had wanted to happen, so I left.”
that that person was himself and not 'Rapunzel' (TWFU)?

And, while there is a folkloric tradition of women setting their suitors arduous tasks - as it might be, go to the Mountains of the Moon and bring me back a phoenix feather, and not just any manky feather, a nice large pinion in mint condition' - do we not wonder, my dearios, whether that was to get them out from under their feet and hanging about in stalkery fashion? (Obvs, is different when it is possessive father setting ordeal.)

I see I remarked some while since about the poem The Glove, that fair Cunegonde was probably hoping the tigers would eat Sir Delorges - but at least she did get him off her back.

I was also reminded of a couple of advice-column things I read somewhere, sometime: one of which was a woman complaining that her husband was always Making Things about the house and their friends would comment and be envious; but that she never got any kudos for the non-performative things she did in the household and would have been grateful for some less showy manifestations of activity on his part.

The other one was similarly about a guy who showed his devotion through DIY, rather than in a more usual and carnal fashion, and she would have preferred a spot of Ye Conjugales.

I suppose this may relate to that trope of 'men have no idea what presents to buy for their wives' and therefore buy things that are trite, inappropriate and unwanted.

This article that I just encountered seems apposite:

I remember, when I was breaking up with one of my exes years ago, he listed all the ways I made his life better when trying to convince me not to go. And I asked him, “but how do you think you make my life better?” and he was taken aback. “I don’t know,” he said. He’d never thought about it.

oursin: Photograph of small impressionistic metal figurine seated reading a book (Reader)
[personal profile] oursin

What I read

Finished The Citadel of Weeping Pearls, which is indeed very good, just required a little more intellectual energy (and possibly, more concentrated reading time) than available to me during and in the aftermath of an academic conference.

Also finished Mitchison's Ghosts, which was very good, got I thought at Mitchison's own rather Schrodinger position on the supernatural. (Is there, has there been, a book to be written on the literary legacy of Margaret Murray's - exploded but in their day highly influential - theories about witchcraft and The Old Religion? I seem to have seen echoes of this, and Graves' White Goddess, over a range of writers and genres.)

Aliette de Bodard, Ships in Exile: Stories of Xuya - three novellas situated in de Bodard's longer future history, very good, just possibly needing a bit more context, but hey, this was a giveaway, wottahell.

Daphne du Maurier, My Cousin Rachel (1951) - spotted in booksale, and have been wanting to read since seeing the movie as is decades since I first read it. Confirmed that there is a honking great, plot-undermining, misunderstanding of testamentary law (I think there were ways this could have been got round in the narrative, but, really, a will made ten years previously would be voided by marriage. Even the lawyer does not remark on this). Also, up codfish and at 'em for Philip Ashley, no? (I will concede that the only du Maurier I have actually reread multiple times is Frenchman's Creek, it is absolutely a go-to work when convalescing from flu.)

Nicholas Blake, There's Trouble Brewing (1937). I was well pissed off when Georgina, having featured in the first few pages, is despatched to do some strenuous outdoor activity in the wilds of Scotland while Nigel Strangeways goes to, as he thinks, give a talk to a provincial literary society and hijinx nefarious deeds ensue. Quite good, i.e. readable, up to the final pages where we have a detailed reconstruction of how the crime must have been done (we have already come to, surprise whodunnit twist).

Sarah Gailey, Taste of Marrow (2017). Enjoyable.

Oh yes, and finally dragged myself through to the end of the book I was reading for review: very dry.

On the go

(I see that I have things listed as 'currently reading' on GoodReads that I should either mark gave up or on hiatus.)

Dorothy Heydt, The Witch of Syracuse (2017, but actually collecting together short stories published in anthologies during the 80s and 90s: free to download). Enjoying these: partly for the flashback to those days when there seemed more of this sort of thing around - women protags with agency but not necessarily ass-kicking ninjas.

Up next

I'm currently in a havering mood on various things as to whether I read them now or save them up for travel purposes.

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susanstinson

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