The Alternate Lexicon
Currently viewing the tag: "utter pedantry"
I am so sick of doctors refusing to listen to what I say that I think I’m going to give up on visiting them. Clearly what I say has little to no bearing on their assumptions, so I might as well not go.
In September, my GP told me he wanted me to get an MRI of my brain to make sure that was fine. I said no. I was scheduled anyway, and left with a nearly $600 bill I cannot afford to pay.
He scheduled me for a follow-up with a neurologist for no clear reason. There is a small lesion on my MRI, but it’s very common in women with migraines (especially with auras), and I’m certainly well read on the various treatment options, so it’s not like his personal lack of expertise was detrimental to coming up with possible drug therapies.
The neuro started off quite nice, and seemed to be paying attention to what was coming out of my mouth. I gave him a pretty thorough history. And then came the big moment:
“So you’ve been on Zoloft, for anxiety?”
This question is the last thing I ever want to hear from a doctor. I will never, ever disclose this information again. I will make up an alternate medical history if I have to. This question means my concerns are no longer valid. Once a doctor knows this information, every single fucking thing I might be concerned over, like 4-5 migraines a week, can be attributed to a recurrence of my anxiety–even if I am not anxious beyond a reasonable level because I’m HAVING FOUR OR FIVE MIGRAINES A WEEK.
He asked me a few minutes later if I was stressed, currently. Well, FUCK, yes, I’m stressed. I hate my job, I have no social life, I am physically separated from my girlfriend by a couple continents and the largest ocean on earth, I’m struggling to make ends meet because of a stupid fucking MRI that I didn’t need, my car got hit and runned last week and now I have bills from that to pay, and I’m having four and five migraines a week. OF COURSE I AM STRESSED, ASSHOLE. But because I answer yes, and am not given a chance to elaborate, the answer to curing my migraines is not either of the drugs I was prepared to tolerate as suggestions (one of which is much less shitty than the other, but they were my two preffered choices having researched every single drug used for migraines on the market).
No. I clearly am just anxious and/or depressed again and need a reduction in stress. Have this pill. It will make it better.
“But I’m neither depressed nor particularly anxious,” I point out. “And the last time I took an SSRI, I gained 40 pounds and felt numb emotionally. I am not willing to try an SSRI again because of this. I would possibly consider an SNRI if we have to go down this route. But dulling my reactions to the stress in my life isn’t going to relieve my headaches, because stress isn’t a trigger as far as I can tell from the patterns I see. I told you that the fluorescent lighting at my work is a trigger, that’s why I get them there. Also, even if I bought your theory that stress is my underlying problem to be treated, I don’t want to do that with pills–that’s why I’m in therapy.”
But if you could just lower your stress, I really think–
“NO. I will not take that drug.”
Try some gabapentin, then.
I had dismissed gabapentin from my list of possible stuff to try very early on, and was annoyed that my experience of my migraines was being dismissed for some alternate cause, so I couldn’t remember quite why I rejected it. Then I got home. Now I remember.
These are the common side effects I get to look forward to:
“Back pain; changes in vision (double or blurred vision); clumsiness; constipation; diarrhea; dizziness; drowsiness; dry mouth; nausea; stomach upset; tiredness; vomiting; weight gain.”
The full list of side effects is horrifying. This is also an anti-epileptic, like topamax, which worked for a few months before becoming unbearable in its side effects. I don’t grasp how a different anti-epileptic for NOT SEIZURES is supposed to make any fucking difference.
Because I was already upset that he was ignoring my suggestions of triggers and ways to fix them, I let him write the script, and had it filled on autopilot. Now I have these drugs that I’m terrified to take and a follow up in two months to talk about them.
I never want to practice medicine with an office and patients and all of that bullshit. I think it must make you stupid, and an asshole. Every doctor I’ve seen seems to be–they start off nice, and then stop listening about halfway through and reccomend treatment for something other than why I’m there.
I am not taking this shit. It’s $10 wasted that I really can’t afford to waste, but I refuse to take this horrible medication. And I’m cancelling my follow-up with him, I think. Doctors who can’t be bothered to respond to any of my suggestions do not deserve my business. I just hope I don’t stroke, or kill anyone, from all the migraines.
So I’ve been working in my head on a tentative, unified theory of autism, giftedness, and extraneous diagnoses like NVLD (that’s nonverbal learning disorder, plebes) and hyperlexia. I’m working on writing it up–there’s a lot, and a lot to reference. I’m certainly not the first person to notice the overlap between these things, and there’s especially a lot of stuff out there trying to relate NVLD to the spectrum (or, sometimes, separate Asperger’s from the spectrum and group with NVLD, a stupid move of stupidness).
Yeah. So.
My therapist lady has reccomended another lady who is part of the larger collective where she works who is a psychologist and does a fair amount of stuff with kids through adults on the spectrum, specifically diagnostic and reccomendation-y type stuff. I’m pretty interested in having that piece of paper (especially one with extra words on it, like “Takes tests by herself, preferably with a computer,” because that group exam shit did not go over well in Melbourne–I seriously wonder how much higher my test scores could have been on end of grade/level tests in school had I been allowed to do them on my own), so this is of interest to me. The major downside is that I have to pay out of pocket and then talk the insurance into reimbursing me. The upside is that her out of pocket fee is not exhorbitant, compared to other psychologists who offer testing (also, she is not in DC, just in Harrisonburg–that place I go anyway).
I knew that this psych lady had read the bullshit report put out by the first psych I saw, so I emailed her to ask if she’d read a self-report as well. She agreed, and I gave her an eight and a half page condensed history, reasons for wanting a diagnosis, and explanation of how I meet the criteria for Asperger’s. I noted that our primary concern will probably be in working out the difference between giftedness and autism. She seemed to agree, and reccomended we do a real, honest to fsm IQ test (I have ethical issues with them, see the footnote) and also some autism testing–and she’d like me to bring in what I’ve already done, like the Aspie Quiz and AQ.
Fun! I like tests! I like official pieces of paper!
Two important things:
1. My very good friend Stina is 25 as of today. I have made her an awesome present of awesomeness, which I’ll discuss after her party as she reads this blog.
2. I love anagrams. I especially love challenging anagrams. And I am here to tell you that there are at least 1001 words that can be made out of the phrase “the very hungry caterpillar.” Kitty has asked me to stop and start using new words (I think I’ll try “where the wildthings are” or “the baby blue cat and the whole batch of cookies”, though that last one is really long and so might be too easy). Please don’t suggest new words if you see one I missed–I like the palindrome number.
With skills beyond my usual expectations, I woke myself at the godawful hour of noon today (I had been asleep since around 8:30, because Prosper was a little beast and ended up being Bathroom Cat (1)) and made it over to work eleven hours before I was due. There was a presentation scheduled on autism and assistive technology, and I was geared up to do some heavy correcting (my experience with the clinical staff here is that they wouldn’t know an autistic child if one stood in front of them had they not come in pre-labelled).
The presentation was given by two nice ladies from a service called TTAC (training and technical assistance center). They were genuinely pro-neurodiversity (though I’m not sure they were familiar with the word–they work with teachers, mostly, on the fringes of a lot of different disabilities without being immersed in any one community) and super heavy on the people first language (a very big problem around here and one that is very easy to accidentally fall into).
Like every seminar ever since the history of seminars, we all had to say who we were, and where we worked (there were a couple of people from outside the centre). I had to go first (ugh), and chose to disclose my place on the spectrum. The direct care staff present all knew anyway, so I couldn’t see any real harm and felt it might lend weight to any corrections or contributions I might make. To my surprise, I had no real corrections to make at all! These ladies were on top of it and very well prepared, and asked for my imput along the whole presentation, repeatedly praising me as the perfect resource for this centre. Quite a lot of awesome validation!
One small point I mentioned during a short discussion of sensory issues facing those on the spectrum was the area of touch. There are a handful of people who are allowed to touch me without warning, though I’ve probably only explicitly talked about it with half of them. And I generally don’t get too upset if a little kid grabs without warning, either. But other adults and older kids to teens? Ugh. I explained that my sense of touch, like many on the spectrum, is both hypo- and hyper-sensitive. I love deep pressure (at the expensive of Kitty’s arms via backrubs) and startle greatly when touched unexpectedly. This is actually a lot better than it was before Melbourne–public transport sort of forces one to suck it up. But a lot of the staff and teachers here will touch kids who are on the spectrum without warning, and then be surprised when there is a meltdown–or a delayed meltdown. It can take minutes, even hours, for some children to process what happened and only then will they react. I’ve been trying to convince my coworkers to quit touching kids for a while, so I hope with the weight of outside help they’ll start to listen. One of the speakers seemed really profoundly moved by such a simple thing.
I spoke with them both afterwards, and we talked about things they might also include like synesthetic responses and how nonverbal children may not be able to communicate that they are having multi-sensory experiences and how that can influence behaviours (I suspect and have no way to test that a lot of visual stims might produce synaesthetic responses, making them waaaay more fun), or how girls are quite probably underdiagnosed and may be caught in an NVLD diagnosis (a post I still need to write), or how people first language is all well and good, but if a self-advocate chooses to use the adjective you should honour that. I called myself and the kids I worked with autistic, not people with autism, and explained that it is partially a taking-back of the word, and partially the formation of a community for those on the spectrum. We want the choice to self-label or not, to choose to be the face of a disability or not. Forcing people first language on those who want to identify by their label is just as unnecessary and potentially harmful as refusing to use it at all. As I explained, and I think I was understood, you should take your cues from the person.
My, um, assistive tech is a planner, my computers, a notebook, and Kitty. I’m not sure she counts, but I think she should–she remembers things for me (I do the same for her), helps keep me organized, reminds me when I need to do certain tasks. The planner helps me week to week to remember my migraine symptoms and appointments. The notebook helps me remember fleeting thoughts (so, so many are fleeting!). The computers allow me to speak at my best, without pauses for thought or silly pronoun or word-order issues like when I’m comfortable in person (plus they have spell check, which is like the visual equivalent of making sure you don’t pronounce a difficult word wrong).
1. Bathroom Cat is what happens when Prosper is being naughty (chewing on the blinds, usually, or trying to scale the fridge, or trying to sit on top of the window) and has to spend a while in the bathroom. His litter, food, and water are all in there, along with a toy or two that I can scoop up as I deposit him there while spouting off admonishments about how I just want to sleep why are you such a horrible bastard cat you are clearly half-breed basement cat spawn I am going to sleep and you are going to think about what you’ve done! Within about three hours he begins the endless whiney mewling to be let out, but those first two are really nice.
So, I went to the doctor for my 2 week follow up after discontinuing topamax last Friday (the 2nd).
He was still pretty skeptical of my claims of possible seizure activity. I haven’t had another event with the nystagmus and all of that, but I’m still having daily rounds of hiccups (fun) and some interesting scintillations. I’ve kept a headache diary, by which I mean I’ve written them down in my planner with details about sensitivities and auras, and I’m back to between 1 and 3 migraines a week (though excedrin helps about half the time, which is excellent). If I have an aura, the excedrin will almost certainly help, which makes me wonder (haven’t brought this up with the doc) if I’m having a different sort of headache sometimes. My migraines almost always begin in the occipital region, mostly on the right but a moving towards being bilateral, and spread along my side until they my temples and sinuses, at which point all bets are off because my head fucking hurts. I try to get to them before there is sinus involvement. Sometimes, maybe 1 in 4 or 5, I notice the right temporal pain before the occipital pain. The pain is pretty variable–if I have an aura, it’s going to hurt less. I would say they’re all moderate, between 4 and 7. I sometimes have tension headaches, which start as an all-over pain and are a 3-4, and these go away without trouble with the application of any pain med–excedrin, tylenol, ibuprofin, whatever’s on hand.
The doctor wanted me to see a neurologist, which I’m not super enthusiastic about. I know that I probably should, but I’m concerned for insurance costs and making my life even more difficult trying to get insurance if I change jobs. He decided that we’d try an opthamologist and an MRI, first; I was so tired that I was willing to do most anything he reccomended.
The opthamologist was nice, but scary. I do not think I will go into opthamology, though I find the actual anatomy interesting. I freaked out when they touched my eyes and I’m lucky I didn’t scratch my corneas. We discussed the possibility of acute angle glaucoma from topamax (he claims to have had 2 patients with it right out of med school, so he suspects it’s more common than is claimed), but I’m free and clear (I didn’t expect to be told about surprise glaucoma, anyway). He believes strongly that everything is just a side effect of my meds and will go away with time (gee, thanks, nothing we can do to fix it now?), in a way that made me wonder what my doc had written in the chart he sent over. “Crazy girl thinks she’s having occipital seizures. Did I mention she goes to therapy? Cah-ray-zee.”
Oh! My appointment with him was a surprise appointment. The doctor’s office said they’d make my appointments for me, which I wasn’t really excited about but felt was a good idea (I cannot remember to call places to make appointments to, probably literally, save my life). So on Monday the 5th, while getting ready to go see KATE!, I got a call telling me my appointment with him was tomorrow afternoon. Ha! And my MRI was on Friday.
So the MRI was fun. I mean, I’m pretty entertained by medical procedures, because I have a fairly good layman’s grasp of what’s going on and am well-versed enough to understand when other things are explained. I’m probably a super obnoxious combination of enthusiastic, curious, and anxious.
I got to the hospital at the ass-crack of dawn, just after getting off work and changing into metal-free clothes. They only other time I’ve had brain imaging (a CT) was in Melbourne just after getting diagnosed with migraines, a precautionary “You don’t have brain tumours, right?” measure. It was without contrast and showed pretty much nothing; this time I got an IV for contrast.
Hey, guess what? I HAVE A BRAIN. It’s amazing, I know.
I’ve looked at all of my films, and there’s one set where I guess I moved. Unless they’re supposed to look like that. The internet is down at home, so I can’t compare easily. In the rest, it is evident that I have a brain, and no apparent giant tumours or anything. That’s pretty much the extent of my diagnostic skills.
As far as withdrawal from topamax has gone, the palinopsia is mostly gone (though it persists on bright things next to a darker background, like my chair against my dresser), and I’m still possible-seizure-creepiness free. I’ve had a few tunnel vision and scintillation bursts, which remain unexplained. My appetite (and weight) are back up–my appetite possibly more than when I started the topamax. I lost 10 on it, and have gained 5 back, so I hope this is where it ends. My word-search and forgetfulness probelms are getting a lot better, though I never expect them to be “normal”–I still have pronoun issues when I’m really relaxed! It’s asking a little much to reach normalcy.
On the subject of word searches, did you know you can make at least 855 words out of the phrase “the very hungry caterpillar”? Stupid restaurant only gave me 10 blanks for this challenge, so I had to prove them wrong. I think I definitively have.
DM CORNISH FRIENDED ME ON FACEBOOK AND I AM STILL ALL CAPSING ABOUT IT DAYS LATER.
Now I must coerce him onto my blog where he can read my fanfiction, see the art, and see my most awesome work of fannish glee: the complete and utter pedantic destruction of his map. Ha HA! (Oh, sorry, that was a bit of an homage to MT Anderson, because I like men who write under their initials and whose stories may or may not involve monsters. Hmmm, how can I get John Green involved with this?)
DID I MENTION HE FRIENDED ME ON FACEBOOK? AND HE CALLED ME “MA’AM.”
Kitty has given me permission to renege on all vows to her on the basis of this alone, but he’s married and so is everyone I have a crush on (well, married or engaged and also straight, which is infuriating), so I think she’s safe. EXCEPT: EXHIBIT A. My life is cruel.
So, um, I’ll pretend that I’m an adult now. Also, that he might actually read my blog.
Hello, there! I am far less frightening than this entry might imply! My name is Ali and my favourite things are things that I don’t like the first two or more years my girlfriend tries to make me read/listen/watch/enjoy them, and just when she’s given up on the very idea, I stumble into them and then never stop talking about the subject. We are three years into an obsession with Kate who, as Kit enjoys pointing out, my first reaction to was “meh.” She has been trying to get me to read Foundling since its release, and I resisted because I am a horrible brat. And now I made fanart and fanfic and I think I’m going to dress the kitten up as a leer for halloween if I can work out how to trick him into not clawing MY face off when I take the box off HIS face. Welcome. Please make snotty commentary. It is only deserved.
Look, it is exceedingly unwise to engage in a battle of pedantry with me. I will even engage those who don’t know they’re playing!
Spoilers for the end of Lamplighter, kind of.
Page 394, US hardcover edition: “Her Grace, the Branden Rose, Europa of Fontrevault, Duchess-in-waiting of Naimes; the Lady Threnody of Herbroulesse and a guest!” Aside from the obvious and terrible error of the oxford comma being missing, what’s up with this “Europa of Fontrevault” business?
At the end of the book when Europe gives her own list of titles: “You are addressing Europa, Duchess-in-waiting of Naimes, Peer of the Hacobin Empire, Marchess of the Vewe, shareward of the Southland states, descendant of Eurodice–speardame of the immortal Idaho, and of Eutychë, her granddaughter–spurn to Dido, and the Branden Rose, terror to man and nicker alike, and I will dare, sir, and I do!”
First of all, “the Vewe” is not on the zoomable map as far as I can find (I may be overlooking it, having given up in frustration–it’s elegant and gorgeous and well designed and I wish it was about 200 pixels bigger each way). Second, Fontrevault is a noteable location. It is mentioned by Threnody by name as the place where her mother and Europe were in sequestury together.
I have come up with two explanations for why Europe omits Fontrevault from her list of titles when claiming quo gratia.
1. The august of the calendars of a region is given the reigning power because she holds some of the highest ranking nobility (if not the highest ranking) of the group, as I understand the appendices (further clarification on this point would be most welcome). Syntychë is the Lady Vey, a Marchess, and the august of her clave, with Threnody Marchess-in-waiting although possibly not august-in-waiting (it hasn’t been clarified how the title is passed).
If Europe’s family holds Fontrevault and we are agreeing to the geography posed by the map, then it is quite possible that her mother (who remains nameless except as the Duchess of Naimes) may have been august at the time Europe and Syntychë were in sequestury. Threnody notes that Europe was kicked out of the sequestury; if her mother was august, this would have caused great shame. She could likely not disinherit her only child from all of her titles, but removing her from that title would provide quite a lot of appropriate remonstration.
2. It’s a simple continuity error.
I lean towards explanation 2.
So I love maps. And I love fantasy fiction. And my current favourite is the Monster Blood Tattoo series by DM Cornish.
He made a zoomable map that I am thoroughly enjoying, except for the plot continuity errors.
First, let me say that this is one of the most beautifully rendered maps I’ve seen created for a fantasy world. I love the zoomable element, which makes it accessible and easy to navigate, and the quality is just excellent. If someone can provide me with explanations for what I think are errors, I would love to know what’s going on.
This post contains minor spoilers for Lamplighter.
First, to orient ourselves, the second book takes place for the first half in Sulk End, at Winstermill, the Lamplighter fortress:
As you can tell, the fully zoomed-out map has us slightly to the right of center and to the bottom.
As the story progresses, Rossamünd and Threnody head to Wormstool, not marked on this map as far as I can tell (I cannot find any of the Lamplighter house names, so I believe this to be a deliberate choice). It is described as being at the far east end of the Wormway/Conduit Vermis, at the edge of the Ichormeer, so I have located it approximately here:
We have moved up and right on the zoomed out map, as is expected for going east and a bit north.
However, this is where the plot issue comes in. Threnody is described as pointing out the hills overwhich Herbroulesse lays in the first day of travel from Winstermill. “Threnody slid over to Rossamünd’s side of the carriage and, pulling back the drape, stared at the low northward hills where Herbroulesse was hidden, still dark despite the morning glow.” Herbroulesse is marked on this map (with a spelling error of one s), but it is down south near the Serenine:
(Also shown is Naimes, Europe’s duchy.) A zoomed slightly zoomed out view provides us with Fontrevault, as well, of importance to the Lady Vey and Europe:
I can find one other use of the name Herbroulesse on the map, further south to cover a large territory. I am unclear which of these are truly intended as the calendar stronghold, but as Fontrevault is noted as a sequestury and given the same symbol marking as the Herbrouless I have shown here, I think I’ve chosen correctly. Either way, neither place is to the north of a day’s ride east from Winstermill.
Also, I am a pedant.
