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HYPERMOBILITY CARTOON: In which I come unhinged — again

4 December 2017 at 16:31 (Ehlers-Danlos Syndrome, Hypermobility, TMJ (Temporomandibular Joint Disorder))

I have severe Joint Hypermobility Disorder.

I dislocated my jaw chewing on a piece of baguette.
I walked a couple blocks to the dentist, did the new patient registration, and they advised me to go to A&E [Accident & Emergency]. So my husband picked me up, and four hours later my jaw had been clicked back into place, and I had a photograph of my x-ray, and some codeine.

Yeup, another datum for an Ehlers-Danlos diagnosis; pretty sure this takes me over the tipping point. Awaiting echocardiogram and visit with a geneticist.

Cartoon title: I WAS CHEWING ON A PIECE OF BAGUETTE AND MY JAW DISLOCATED The doctor (a Black man with a beard and dreads, wearing a white coat and stethescope) is showing me my temporal-mandibular joint x-rays. (I’m a white woman with short dark hair and glasses, wearing a navy hoodie.) The doctor says to me, “That shows where the mandibular condyle of the jaw came out of the temporal bone of the skull.” I’m thinking to myself, (I’m going to turn that baguette into a nice, soft bread pudding. Revenge is sweet — and spiced!)

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Old Lady Shoes

23 November 2012 at 6:45 (Arthritis, Clothing, Hypermobility, Insurance, Rants, WTF?!)

Yeah, you’ve seen them: old ladies wearing Old-Lady Shoes.

Dowdy footwear that inextricably time-travelled from some economically-depressed post-war period.

Or low-heeled, lace-up shoes resembling dull leather sneakers, that shuffled in from the land that fashion forgot.

Practical shoes. Hopefully, comfortable shoes, given the tired way those old ladies are getting around. But damn, I mean dayam, if not quite ugly shoes, then definitely shoes without style.

And, as you may have guessed, suddenly, here I am, too.

Last fall I broke my foot. The displacement fractures in the metatarsals (the long bones over the arch) mended, albeit crookedly, with offset mends that make them look like rivers with meanders. (Don’t fall over in shock when I say that my hypermobility includes rather low arches, too.)

This past spring my foot started hurting again, as my second job stocking groceries involved walking around concrete floors and stocking heavy cases — not good for the osteoarthritis or the broken bones. So I got orthotics to provide more support for my poor ravaged feet.

But now my foot is constantly aching, and I’m limping, and am getting what I’m assuming are referred pains in my knee and hip. And when I saw the orthopedist earlier last week for chronic foot pain, he disapproved of my buckled Mary Janes I’d worn to my first job, and told me I need to wear shoes that lace up.

I’m not much of a fashionista, but I can’t picture wearing either hiking boots or my rumpled black sneakers with skirts, suits or dresses. So that means I need to get a new pair of shoes. Or maybe a pair of knee-high boots.) But, I can’t wear polyurethane (PU), PVC or silicone, which limits me to fabric or leather footwear, which is of course, more expensive.

Great! I need to find:

slightly-dressy,
low-heeled (no more than 1.25″ / 5 cm),
lace-up,
leather shoes,
with removable insoles (so I can replace them with my orthotics),
in a size US womens 10.5 (UK 8, EUR 42),
wide toe ( C ),
preferably brown.

If you’re laughing and/or groaning, you probably have some idea of the magnitude of that request. I mean, that is pretty specific! Not being fond of shopping, I did some quick noodling around online, and discovered that the lower-end department stores don’t carry leather shoes (boo!), and that many of the online sites don’t mention whether or not the insoles can be removed. (I’e also become quite the connoisseur of Web sites with numerous lists of ways to filter search requests.)

I also noticed a general lack of lace-up shoes, aside from “granny boots” with 2.5″ heels. So I looked up the current addresses to the store with a huge, self-serve selection of shoes, and stopped by there en route home one day.

They had nifty boots full of brass buttons, sharp-looking tweedy spectator pumps [court shoes], loafers and flats with all kinds of fun hardware … but an absolute dearth of lace-up shoes. (Since I have wide feet anyway, I checked out the men’s section, but was dismayed to find walking shoes with heavy lug soles, or stiff wingtips so stylishly long that it seemed my feet would look like aircraft carriers, down to the brogues resembling rows of rivets.)

I finally asked a sales clerk for assistance, just in case I’d missed something. She was understanding of my requirements, even letting me slip out some insoles to test my orthotics on a couple of pairs — only to find that the toe boxes were too low-profiled. She too, was surprised to realise that there were so few lace-up shoes. What few they had were made with the insoles sewn down, or were fashioned of (sweat-inducing) imitation leather. And, apparently this year’s crop of sneakers [trainers] comes in neon colors. Naturally, chef’s or medic’s clogs won’t work either.

Le sigh. And this is why I hate shopping for wardrobe items (in addition to the noisy lighting fixtures that drill into my head.); it seems that no matter what I’m looking for, it’s not to be had. The year I wanted khaki shorts, I couldn’t find khaki shorts — yes, khaki shorts! Ditto denim overalls. Or a long-sleeve white blouse with sleeves to fit my arms, and tails long enough to stay tucked in. Or, good grief, cufflinks to go with a French-cuff blouse I found at the thrift store.

And so it goes.

I already have a pair of black sneakers that I wear (with black trousers) at my grocery job. Sorry, but unless I’m evacuating in an emergency, I can’t imagine wearing either hiking boots or my rumpled black sneakers with skirts, suits or nice dresses.

All I need to find is a pair of slightly-dressy, low-heeled, lace-up leather shoes, with removable insoles, in a size 10.5 wide, preferably brown. No, I’m not being picky, I’m being particular.

The “slightly-dressy” and “preferably brown” are what I want, but the rest are what I need. (And unlike a coworker who has diabetes, neither my orthotics nor my footwear are covered as a necessary medical expense. Those orthotic insoles I had to get cost me half of what I pay for my monthly mortgage!)

Even worse, a lot of those “comfort” shoes don’t lace up or come in 10.5 wide.

Or, I can find lace-up “granny” ankle boots or knee-high boots, but the heels are too high, or they are made of some sweat-inducing synthetic.

Or, I can find oxfords with the right heel height and made of leather, but not in a 10.5 wide.

Or, I can find cute, low-heeled, leather lace-up shoes, but either the insoles are sewn in so I can’t use my orthotics, or else they’re so cheaply made there isn’t any arch support.

And so on, and so on.

So now I have joined the ranks of older women looking for supportive, sensible shoes that don’t look too dowdy. Don’t laugh at us gimping along in our leather sneakers; those specialty shoes are DAMN hard to find!

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Life in elastic, it’s fantastic!

11 December 2011 at 9:30 (Arthritis, Humor/ Fun Stuff, Hypermobility, Raynaud's Phenomenon)

So I set another knee support the counter, when the pharmacist noticed my compression gloves, which I wear for arthritis & Raynaud’s.

“Life in elastic, it’s fantastic!” I joked, riffing a line from the chorus of a pop tune. That got me a friendly smile, but I’m not sure she had heard the song, “Barbie Girl” by the Danish pop group, Aqua. (Fun trivia: the toy company that owns the rights to the Barbie doll, Mattel, filed a lawsuit against the record company, but Judge Kozinski opined, “The parties are advised to chill.”)

Of course, the thing about pop tunes is how well they stick in your head; and I finally got around to writing the rest of my own version!

(Unofficial version of just the music and captioned lyrics, in case you’re not familiar with it; the original is slightly risqué.)

I’M A BENDY GIRL

Hi Bendy
Hi there!
Do you wanna go for a spin?
Sure do!
Jump in…

I’m a bendy girl, in a bruising world
Life in elastic, it’s fantastic!
Dust my derrière, I fall everywhere
Articulation, brace for recreation.
Come on bendy, let’s go mend ye!

I’m a bendy girl, in a bruising world
Life in elastic, it’s fantastic!
Cinch and tie my splint, secure my ligament
Hyper-extensible, I’m too flexible.

I’m a spry stretchy girl, in my rubbery world
Strap me right, make it tight, loose is folly.
Oh rag doll, trip and fall, feel the footings you take,
hold my arm, what’s the harm, I’ll uphold you.
You can lift, you can help, if you say: “Just when you need,”

oo-ooh-ooh

I’m a bendy girl, in a bruising world
Life in elastic, it’s fantastic!
Reinforce my knees, fortify me please.
Irrepressible, we’re adaptable.

Come on bendy, let’s go mend ye!
ah-ah-ah-yeah
Come on bendy, let’s go mend ye!
oo-ooh-ooh, oo-ooh-ooh
Come on bendy, let’s go mend ye!
ah-ah-ah-yeah
Come on bendy, let’s go mend ye!
oo-ooh-ooh, oo-ooh-ooh

Make me bind, make me brace, do whatever it takes
I can strengthen myself, to avoid further breaks.
Come bounce in, bendy friend, let us try it again,
rejuvenate, renovate, let’s go mend ye!
You can lace, you can zip, if you say: “Just where you want,”
You can wind, you can wrap, if you say: “Just where you want,”

I’m a bendy girl, in a bruising world
Life in elastic, it’s fantastic!
You never lack in care, unhinge me anywhere
Lest subluxation, need relocation.

I’m a bendy girl, in a bruising world
Life in elastic, it’s fantastic!
Watch my limber pose, stretching neck to toes
Flexibility, my resiliency.

Oh my, I feel so nimble!
Well Bendy, we’re just getting started
Aw, I love your class!

2 Comments

That’s Not Helpful!

3 December 2011 at 3:46 (Accessibility, Advocacy, Coping strategies, Hypermobility, Physical impairments, Work / Employment, WTF?!)

Here’s a riddle: how is a broken foot like being pregnant?

(No, it has nothing to do with wait times.)

Mid-October I entirely missed the last two steps of the stairs to the basement floor and BLAM! Didn’t even experience the slip and fall. Hurt so much I didn’t even cuss, and only OW’d so folks would know I’d been hurt. My ankle really hurt, so I limped to my bedroom and pulled on an ankle elastic (which I keep in my purse because being hypermobile means easily spraining things). Hobbled around the rest of the day, giving it the usual Rest-Ice-Compression-Elevation between doing stuff. That was a Friday.

The next day it was really swollen, with a purple bruise covering the entire upper surface, but it wasn’t horribly painful like a migraine. I called out from stocking work at the grocery, rested more, and tied on a foot brace. My son-in-law said it might be broken (it’s good to have a medic in the house).

Guess what? Broken bones are not always screamingly painful. Whoda thunk?

Sunday I went to the walk-in clinic, and yeup, two of my metatarsals were broken, in a displacement fracture, no less. (Meaning, the bones weren’t even lined up, but were slightly ajar.) They put on a splint. The next day I went to an orthopedist, and after due examination of the clinic’s radiographs, the doc sent me to get a boot-type cast, and make follow-up appointments. On my end, I remembered to get a ‘script for a temporary Disabled Parking permit. Whee.

That was the easy part. But OMG the annoying part is not the broken foot itself.

The annoying part is dealing with the public,
those discourteous, “well-intended”, damnably useless interactions!

Because you see, when you have a physically-apparent injury, one’s body suddenly becomes part of the public’s purview; they are free to make enquiries, “do help to you”, “charmingly” engage in the social distancing of pity, and give malcommendations.

(Hopefully I won’t use up my month’s share of sarcasm quote marks, but one must hazards risk.)

It’s intrusive. Being visibly disabled [sometimes] means losing status to where anyone can ask most anything of you.I don’t mind answering questions from family, coworkers, and friends about the event and my recuperative status. But seriously, why should every random stranger feel privileged to details? Were the issue nephrological, nobody would want to know what was wrong with my bladder, or why I had to make so many bathroom trips, about the thrills of contrast dye, or what my urologist recommended. Yet like when bearing a belly bump, it’s open season. WTF?

It’s ~~unaccommodating~~ disaccommodating. I had not even left the orthopedists office when I was first treated to un-wanted, un-needed, un-help. I had used crutches before (decades ago when I stepped into a rabbit hole, and you can imagine all the er, lame jokes that transpired), and it took but a couple of days to re-acquire my expertise. When I’m using crutches and opening a push-door, the dance goes as follows: swing my body around to back into the door and push against the bar with my buttocks, then after creating the useful gap, balance on the strong foot to turn again, and swing the crutch on my working side around to prop open the door with the rubber foot. Well, the doctors had removed the splint and were sending me down the hall to get the boot. So with my fractured foot all bare, I approached the door to the waiting room and had gotten as far as butting open the door when —

— some idjit hanging around the waiting room decided to be “helpful” and without saying anything, bounded over and suddenly yanked the door open! Mind you, I was balanced on one foot and leaning backwards against the door, so guess what?! Well, I may be clumsy (it comes with the large territory of hypermobility) but thankfully I also have lightning-fast reflexes, and was able to crash to the floor safely. (Dancers and gymnasts know whereof I speak.) That’s not helpful!

And then we have the other unwanted bits of the social model of disability.

It’s … infantilising. Such as when I’m doing something totally mundane, just minding my own beeswax and swinging through a store to get to the restrooms, when some complete stranger feels the need to comment upon my mobility,

“You’re really good at that!”

Except it doesn’t sound at all like admiration at my ability to execute stunning pivots around pyramids of produce, but rather like praising a school child who had colored between the lines on a Kindergarten worksheet.

It’s patronising. When I took advantage of the store’s motorcart to shop for groceries and am cruising at a whopping three miles per hour in a straight line down the middle of the bread-and-jam aisle, and receive a smarmy,

“Wow, look at you go!”

And of course, it’s pitying.

“Oh, you poor thing!”

There is the assumption of Injury As Tragedy; they have to know when it’s going to be better. Well, what if it’s never going to get “better”? What if it’s permanent, or chronic and intermittent? It’s the sort of pity where people can’t see past the “broken” part and are uncomfortable; they’re full of Schadenfreude, relieved that the Bad Thing didn’t happen to them. Sometimes the coin of pity they pass along is a kind of magical thinking, token payment to Fate to avert similar disaster.

That’s not helpful.

And let us not forget the malcommendations, a subject of such amazing WhatTheFuckery that it deserved its own post. To wit:

You can tell that you’re running into the lousy end of helpers when the need for social recognition outweighs and over-rules the negative feedback from the recipients. You can tell when they lose the “take it or leave it” perspective and insist that what you need is what they have to offer. Protesting the inappropriateness of their pet form of aid is often useless; you get condescending responses about how they are “specially” qualified, and how you are being unappreciative, and cannot know what is best for you simply because you are of the recipient class.

Such dread Helpers and Fixers want not just the ego-boost and recognition; they want status, and will even sometimes create their own imaginary status markers as proof of why others should recognise their special knowledge and munificent public service. At worst they are narcissistic, at best, merely clueless.

One of the oddest things I have run into with such types is not just the insistence that their pet solution is what is needed, but that any solution they have heard of should be helpful and tried. The advice is coming from them and they want what’s best for you, therefor it’s automatically good advice. I have at times been left so amazed that someone could suggest doing something so far off base with my needs, so profoundly inappropriate, that I was all but sputtering. It wasn’t just an off-target bit of advice, an unhelpful recommendation. It was, I decided later, a malcommendation, a bad recommendation (usually inadvertent) but still bad advice nonetheless.

To take that abstract description to a real-life example, I offer this:

I was at one of my jobs, and a coworker said she would do thus-and-such for me. “Oh, no-no, that’s okay; I’m fine,” I politely dismissed, because I had already sussed out how I was going to perform my duties with my own modifications. But no, she was insistent; after all, she was (at her other job) a medical assistant of some sort,

“No no — I know all about that,” she asserted, her smugness wafting over in a perfumed cloud.

::CRINGE::

Look, as a medical assistant or what-have-you, you don’t know “all about that”; it’s obvious that the doctors know LOTS more.

Secondly, you’re presuming that you know what is best to do TO me, or to do FOR me. Apparently you’ve not realised that I don’t want to be a passive recipient of your “expertise”.

Seriously, when doctors-medics-aides-ancillary-healthcare-professionals know things I don’t know, that’s great! That’s why I’m here visiting your officies. But please, presume some self-awareness of my actual needs, and competency on my part. Work WITH me.

Otherwise, that’s not helpful.

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Singing teh Brain-Dead Workin-Hard Blues: Remodeling

7 July 2011 at 3:13 (ADD/ADHD, Arthritis, Doctors, Family, Gardening, Hypermobility, Migraine, Pain, Work / Employment)

Had a migraine this morning
Cancelled on my shrink.
Need to clean and organise
But I can’t even think.

Moved bedrooms three days ago
O where is my daily pill box?
Boxes and piles everywhere
O where are my clean socks?

I need to go out and garden
Weeds have eaten the side yard.
I need to finish planting
Heat’n’humidity too damn hard.

I need more hours at my job
Stocking groceries at the store;
717 pounds of charcoal
Added bruises to the score.

Need to hammer and hang things
But grandchildren are asleep.
Need to paint and put away stuff
Always more work and I just keep–

Charging for hardware I gotta buy
Like a frequent flier down at Lowe’s.
Wish everything was at the Restore*
Spending too much goodness knows.

Had a migraine this morning
Cancelled on my shrink.
Need to clean and organise
But I can’t even think.

Moved bedrooms three days ago
O where is my daily pill box?
Boxes and piles everywhere
O where are my clean socks?

* Restores are where Habitat for Humanity sells new/gently used building materials; they are a great way to reduce-reuse-recycle and save lots of money on building supplies! The hitch of course is that the items vary daily at stores.

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Distress Data Diary

7 February 2010 at 22:30 (Arthritis, Doctors, Food, Hyperacussis, Hypermobility, Ménière's disease, Migraine, Pain, Proprioception)

Dear Diary,

Wait a minute, this is a migraine diary; useful and important, but not such a “dear” topic.

Dear Diary,

Today I had another migraine. The symptoms included:

As mentioned, I’m putting together a diary of migraine details for an upcoming appointment with a specialist. The other week I had one so bad that my son had to take me to my GP for a Toradol injection, to be taken with a fresh dose of Imitrex — “fresh” in both meanings, because earlier I had taken my last and slightly-expired pill. I’d planned on asking the pharmacist to order a refill, but of course, had been unable to go into work at the grocery! (The irony.)

“Have you made an appointment with a neurologist?” asked my doc.

“Headache speshlist; don’ remember whom.” I held my wallet in front of my nose and squinched one eye open a millimeter to pull out the correct business card.

“Oh good, that’s just the person I wanted you to see. Takes forever to get an appointment, though.”

“In April,” I mumbled.

“Yeup; takes forever. Okay, I’ll have the nurse come in with the injection, and I’m writing you a ‘script for some more Imitrex.”

” ‘Ank-you.”

When I do get to see this new specialist, I want to be armed with a good data set so we can maximise the efficacy of our first appointment. But to do that, I had to figure out what kinds of data would be needed. This in turn meant researching the various types of headaches, migraines, and symptoms. I got to learn lots of great new words!

If the headache is bilateral (both sides of the head), then it’s a regular tension-type headache. I’ve had some intractable ones that linger for a couple-three days, despite various medications.

Unilateral headaches (just one side of the head) are the migraine sort.

There are the icepick migraines that feel like someone just stabbed you in the head. Although intense, they are mercifully brief — just a minute, though there can be several repeats throughout the day.

Migraines can be temporally divided into three stages: the prodrome or early-warning symptoms, the migraine itself, and the postdromal after-effects. If I wake up with a migraine, then I don’t have the benefit of prodromal symptoms to alert me to take some medication and stave off the worst effects. However, one of the benefits to keeping data sheets is the ability to suss out what sorts of symptoms are prodromal, so I can have better self-awareness.

A persistent tension headache can turn into a migraine (ugh). Eating much wheat also seems to be a trigger for me; a small cooky isn’t bad, but a couple slices of pizza will do me in later (not to mention digestive hoo-hahs as the gluten works through my kishkas). Barometric pressure drops — especially those that bounce back up from a swiftly-passing storm — are notorious for making my ears and head hurt.

The cognitive and mood factors can be less obviously related to migraine prodrome: brain fog, depressive state, insomnia, or light sensitivity. You might think these would be pretty obvious, but the problem with chronic pain (from hypermobility+osteoarthritis+TMJ, especially combined with 11-13 hour work days) is that one gets into those viscous circles of pain-sleep problems-depressive states. Throw in everyday hyperacussis and UV-sensitivity, and sometimes it’s hard to sort out what is which. “Ain’t we got fun.”

Once I started researching various migraine symptoms, I had a much better means of both identifying and describing the various symptoms I experience.

One thing that quickly became apparent was that like snowflakes, no two migraines were precisely the same. This is interesting from an objective point of view, but it also means that I have to spend a bit of effort to verbally identify the symptoms I experience during each migraine, and then shortly thereafter note them. Although a cognitive task that I cannot always perform throughout the entirety of the experience, it does afford me the opportunity to detach part of my consciousness to that objective state, which gives me one step of remove from the intensity of the experience. (My research background is useful in so many ways.)

An Aura can include visual disturbances such as:
Scintillating scotoma the classic flickering/shimmering/sparkling arc, zig-zag or castle crenelation effect;
Drifting phosphenes phosphenes are “stars” you see if you stand up too quickly or sneeze; phosphenes can also refer to the geometric patterns that happen when you press on your closed eyes;
Diplopia just the fancy word for double vision;
Oscillopsia when objects appear to oscillate, vibrate or bounce;
Photophobia “the light, augh! too bright!”
Allodynia pain from nothing in particular, or something that wouldn’t normally cause pain, “augh the sheet’s touching my arm!”;
Osmophobia “the smells, augh! too overpowering!”
Olfactory hallucinations smelling things that aren’t really there;
Phonophobia when even the clattering of dust particles falling is too loud;
Hyperacussis I startle overmuch at sudden or sharp noises — well, even more so than usual;
Auditory hallucinations hearing things that aren’t there, nor are related to my tinnitus;
Synæsthesia Feeling sounds, and other odd cross-sensory effects;
Paresthesias tingling or numb feeling like “pins and needles”, or like someone is yanking on my kneecaps or tendons;
Vertigo, nausea, vomiting, chills or clamminess;
Ataxia a “lack of order” or bad muscle coordination;
Disarthria / aphasia disarthria is trouble speaking clearly, and aphasia is problems with speaking and understanding, or making sense of reading things.

Once all that is over, there is the postdrome, or “migraine hangover”. I’ve no idea how one compares to a drinking hangover — I’ve never drunk that much! But it is something like having the flu: weakness, generalized muscle aches, laterality confusion (right v left), fine-motor difficulties, exhaustion, lack of appetite, intense thirst, intermittent strabismus (wandering eye), temporary dyslexia / reading comprehension, auditory processing lags, concentration problems, or once in a while, feeling energetic — “wow, I’m no longer in pain!”

Then of course, the was the issue of creating a useful data sheet, one that was both complete and easily used — and this is where my dual backgrounds in behavioral research and typography+layout blend well.

As with any sort of biological data, it is important to note the frequency, intensity and duration. In addition to those classic factors, there are also the sorts of factors that one more often considers in ecology: the type, season (if any – only a data set of more than a year can determine that), and the extent, in this case, the extent of the disability that results from migraines.

I’m sorted the pain and disablement into three levels:
1 annoying pain, workable
2 moderate pain, reduced work
3 severe pain, incapacitating.

With the diary, I can then sort out the frequency, intensity and duration of the issues. So far I’m relizing that it’s much more of a problem than I had realized. It’s not so much that one gets used to pain, but that one gets used to being in pain, to headaches as a way of life.

Damn, but April’s a long ways off.

8 Comments

“Attention grocery shoppers!”

24 January 2010 at 6:09 (Anti-Quackery, Arthritis, Auditory Processing Disorder, Critical Thinking, Food, Hypermobility, Prosopagnosia, Science, Work / Employment)

“We have a special going on in our natural foods aisle, right now! You can get your specialty questions answered by our very own over-educated scientist-grocery stocker! That’s right, weekends and evenings only, over in our natural foods aisle! And THANK YOU for shopping your local supermarket chain grocery!”

Oh, boy.

It’s one thing to be helping someone find the curious location where the grocery manager decided to stock the barley. No, not with the rice and beans — that’d be too easy; it’s with the bouillon.

And it’s another thing — but I get ahead of myself. (Alas, when I do that I’m likely to trip over my own feet and sprain an ankle, but that’s hypermobility for you).

One evening, every other row of fluorescent lights was off, as was the canned music. Apparently they were filming a commercial or some advertising stills. Whatever, we had a couple hours of bliss. Why can’t the store be so calm and pleasant all the time? Because the people who study customer behavior say that noise and lights are important. Or maybe the grocery industry just thinks that noise and lights are important. Or maybe old research suggested such. Or maybe stores are following some historical misinterpretation of behavioral research. Hell if I know. As for me, the canned music just adds unnecessary background noise, aggravating my Auditory Processing Disorder. Did someone just page Manager to the Customer Service Desk or Andrea to the Customer Service Desk? Did my boss just page me to dial 14 or aisle 14? “Oops, sorry, mis-heard you with all the background noise,” I apologise to an older gentleman, as I lead him away from the [recycled paper] brown plates to the bran flakes.

Sometimes a customer will ask for something not on the shelf, so I helpfully zip down to the back room to see if there’s any in backstock. Usually, there isn’t, because by definition, backstock is the overflow that won’t fit on the shelves. Alas, if I’m in a distracted mood, I will forget to make a mental note of what the customer is wearing, and upon my return, will have that panicked second when I realise that they have moved onto another aisle, and I am supposed to find them. Oh, the perils of being faceblind: I can’t remember people! Were they alone, or with another adult, or children? Did they have a large or small cart? Do I have any idea of whether they were male, female, or some overbundled or indeterminately-coiffed gender? Were they were pink- or brown-skinned? Hat? Fancy purse? Team jacket? Why can’t everyone be as distinctive as the fellow who dressed like Eddie Izzard’s less-chic sibling?

My other problem of course, is that I actually answer the questions about the things we sell. Some day, someone is going to get annoyed.

Once in a while I stock groceries over in the natural foods section. It’s pretty much like stocking groceries over in the unnatural foods section, except that omitting artificial coloring makes food more expensive. That and the aisles are narrower, so I have to park the flatbed down at the ends of the aisles and lug more cases. One day I forgot my knee pads, and realised with a heavy note of irony that stocking all the arthritis treatments was making my knees ache.

“Um, where do you sell the sugar?”

“The sugar?” I repeat, buying a moment’s time while I re-engage my customer-conversation scripts, and activate my mental map of the store.

“Yes, I want the sugar without any chemicals.”

Omigod. Aside from bottled water, the bags of sugar are probably one of the purest chemical resources in the entire store.

“But sugar is just sucrose; it doesn’t have any added chemicals,” I manage to shut my mouth before going onto explain that sucrose is a disaccharide of glucose and fructose. Nobody cares … “Here are our organically-grown sugars on this shelf. And we also have sucanat and turbinado, if you’d like.” (These latter two are less-processed forms of cane sugar; they have varying amounts of tasty molasses impurities that also make them brown.)

Honestly, a “chemical” is simply a substance with a defined composition. You already know what H₂O is. Sucrose is C₁₂H₂₂O₁₁ – there are 12 Carbon molecules, 22 Hydrogen molecules and 11 Oxygen molecules. Of course, just knowing how many atoms of each element isn’t enough – other sugars such as lactose and maltose also have the same formula. The differences are in how those atoms are arranged.

And if you’re shopping for plant fertilizer, a nitrate is a nitrate is a nitrate, and they’re all NO3-. The plant doesn’t care where the molecules came from, nor can it tell the difference if the nitrate came from an organic (naturally-derived) source or an artificially-manufactured source. That said, organic fertilizers are more expensive and less concentrated, but are less likely to result in a build-up of salts atop the potting soil.

But please, don’t ask me for anything “chemical-free”; the only thing that is “chemical free” is an absolute vacuum.

I retrieve random things left on the shelves, where someone has left a box of Big Name mac & cheese amongst the organic mac & cheese, a shopping list, a wee sample cup given out by the guy flogging new flavors of hummus, and a box of Airborne.

“What does that do?” asks the other grocery stocker, gesturing at the colorful box that proclaimed, “Created by a school teacher!”

“Nothing. There’s no research evidence to support it at all. A grade-school teacher is not the same thing as a compounding pharmacologist.” Were I in charge of ordering, we wouldn’t waste shelf space for nonsense like that, or for things like Bragg vinegar that is supposed to “help remove body sludge toxins”. Body sludge toxins, what nonsense! (I suppose it’d help the lime buildup in my sink drain.)

“Excuse me, where are your all-natural gummy candies?”

Because you know, gummy candies are so natural. Wow, I’d love to have a shrub that produced gummies, especially the cherry and liquorice sorts. Does the soil have to be aerated by gummy worms? I hope it’s not thorny … “They’re over here, on the top shelf. Is there anything else for which you’re looking?”

“Attention grocery shoppers! Are you looking for holiday candy and merchandise? You can find it all over in aisle 14, where we have a wide selection of holiday candies in Fun Sizes, all your same favorites as the last holiday, but wrapped in this holiday’s color themes! Don’t forget to get some holiday-themed merchandise for your loved ones, and holiday-themed party goods as well. And THANK YOU for shopping your local supermarket chain grocery!”

22 Comments

Some more of my favorite things

18 January 2010 at 4:33 (Arthritis, Hypermobility, Ménière's disease, Pain, Raynaud's Phenomenon, Sleep)

Yet another dreich day, overcast, mizzling (misty-drizzling), clammy and hovering around the freezing mark. I’ve managed to wrench my ankle a bit, and am long-last holed up in bed with my warm rice-sock wrapped around it, a and have a bowl of oatmeal and a mug of rum-tea for comfort.

In a salute to all things cozy (because dammit, it’s January and there’s still February to slog through), I thought I’d share some of the things that make my life more comfortable.

Let’s start in the kitchen, because everybody eats. I’ve always hated can openers, probably due to my left-handed tendencies makes hooking the mechanism onto the can seem absurdly awkward. (Then again, my lefty can opener is also annoying.) Cheap can openers — the sort most of us have purchased at the grocery — have lousy handles that cut into the hands, and they eventually get rusty, dull, and gross as well. Even the KitchenAid opener with fatter handles is cumbersome, especially for my daughter who has small hands. But last year I found a wonderful tool, not just the OXO brand, but their locking Good Grips version. The locking part means that once you’ve clinched the opener onto your can, it hangs onto it, like a Scottish Terrier with a tug-toy. When the can’s open, push down on the little button and it releases the can. It’s easy for arthritic grandma (me) to use, it’s easy for my son with the giant hands to use, and it’s easy for my daughter with the small hands to use. Hooray!

can opener with comfy thick handles and a wide half-moon turnkey

I like my futon bed because it provides excellently firm support, but on the other hand, a futon is so firm that I felt like an even more arthritic “bag o’ bones” trying to sleep on it; no position was comfortable, and sleeping on my side was worst of all, as my shoulder and hip bones pressed against the mattress. So I finally got a memory foam mattress topper. After unwrapping and unrolling, it took a couple of days to off-gas and expand all the wrinkles out before I dragged it atop my bed and popped on the mattress cover that came with it before remaking my bed. But the foam “breathes” well so you don’t get sweaty, and has such small pores that it doesn’t feel like lying on a sponge. And heavens, it’s amazing how much more restful my bed is now!

Once I finally ooze out of bed between the cats, it’s time to get dressed. Half the year I start with a base layer of thin silk long underwear. Silk is amazing stuff; it helps you stay warm yet doesn’t get too warm. Plus, the material is so thin and slick that my outer clothes are neither tight nor bunch up.

Often I’ll also end up wearing my gloves. Our classroom has always been the coldest, but even at the grocery my hands will be cold. After examining a number of styles, I finally settled on some Thermoskin arthritis gloves.

fish-scale patterned black stretch gloves without finger tips

The neoprene-like material helps trap body heat, which keeps my hands warmer despite the Raynaud’s, and that plus the compression reduces the arthritis pain. The gloves are also covered with grippy-nubbins, so it’s easier to hold onto things. Most arthritis gloves are that ugly medical-beige color, but I think this black color is a bit more stylish; one of my students said they look like “Spiderman gloves” which is probably as much of a compliment as one is going to get on a medical aid.

Now there’s a gripe – why IS it that anything in the “medical aid” category is nearly always ugly and over-priced?

After a couple of months of coping with the sudden attacks of vertigo, I finally realized that I wasn’t getting to work quite as well-groomed as I used to. I wasn’t gross, just not getting my hair washed daily. Eventually I figured out that when I don’t have time for a bath in the morning, I was skipping a quick shower because I don’t have good balance when my eyes are closed or when I’m looking upwards, both of which apply to standing in the shower and shampooing! Okay, I decided to get a shower seat, to sit safely in the shower without feeling like I was going to fall and crack my head. So I bop on down to the store, and within the hour emerged with a box of parts to assemble. The assembly was simple enough, but I was slightly miffed. Thirty-five bucks for an ugly plastic thing! Granted, the new piece of furniture cluttering up our small bathroom is not just a shower seat — we all love the fact that it makes a great book or laptop bench when one is parked in the bathroom. But holy cows, can’t someone design something useful that doesn’t look like it came home from the hospital?

Plastic white seat with drainage holes, on tubular metal legs

I haven’t used a cane often enough to warrant getting a fancy one, or to become a connoisseur of the various features. But when I do have a badly-twisted ankle, I’ve come to appreciate how a cane helps ease my gait. It also made a dandy pointer when I taught horticulture classes. It even gives you something to lean upon when waiting on a bench. But as everyone who’s ever used a cane knows, canes are annoying when you’re not using them. They’re hard to park securely when you’re dining, and they’re damn awkward if you’re traveling, especially on airplanes. That’s why I got a folding cane. I can just stretch the ends a bit and pop it out of joint, and fold it up to store in my carry-on bag. It’s also pretty fun to pull out and give it a little flick and click-click-click everything snaps into place. (I find this feature terribly amusing.) Currently, it lives on the floor of my car, out of the way behind the driver’s seat, waiting for the next time I need it.

What’s your favorite thing for making your life easier?

2 Comments

We Mutants

5 September 2009 at 23:54 (Arthritis, Diversity, Hyperacussis, Hypermobility, Prosopagnosia)

“Now remember — you’re special, just like everyone else!”

It seems that classic punch line (for all the jokes on useless self-esteem boosters) was never truer. At the ever-entertaining NeuroLogica Blog, Steven Novella explains recent findings that everyone is a mutant.

Given my numerous neurological quirks, I had long assumed my mutant status to be true, and when finally diagnosed with prosopagnosia (which can result from a single point mutation), I then took it to be a given.

As Novella, points out, not all mutations give one super-powers; in fact, most of mutations are neither beneficial nor detrimental. There’s certainly nothing exciting about hyperacussis, as I’d previously described in Can you sue your Fairy Godmother for malpractice? Some things like the are just annoying; were I graceful, the hypermobility might have enabled me to be a dancer or gymnast. Instead, I’m just arthritic and bruised, for all it’s handy to always be able to reach that itchy spot.

100 – 200 mutations per person may be trivial in the genomic sense, but is far from trivial when considering human diversity. Mutation is normal. It’s ubiquitous. Not only are there no “perfectly average” people, but we’re all mutants. Now, can we finally lay disablism, transphobia, and the rest of the xenophobic rot to rest?

Now ‘scuse me while I go for a soak in the tub; maybe I can distract meself from this silly jingle that’s gotten stuck in my head:

I’m a mutant, you’re a mutant, xe’s a mutant, too.

We’re all alike in our differences, so whatcha gonna do?

5 Comments

Periods

25 June 2009 at 11:58 (Arthritis, Eye contact, Hypermobility, Migraine, Pain)

Every now and then someone asks a question that helps you define an issue in life. Recently a nurse asked me, “Do you have days when you’re not in pain?”

I considered this for a few seconds and replied, “I have periods during the day when I’m not in pain. Usually because of my meds. But I haven’t had any days without pain for a long time. Since … I can’t remember when.”

I fidgeted thoughtfully for a moment, then remembered to make some conversational eye contact and added, “The thing that’s hard to explain about ‘pain management’ is that it’s not that I ‘get used to the pain’, but that I get used to ‘being in pain’. It makes it too easy to overwork, and not get enough rest, and get sick easier.”

We chatted a bit more about other stuff in life, and bid our farewells. Alas, she had nothing to offer by way of remedy for the situation, aside from reminding me to get some sleep. She’s not my medic; she’s my student.

But she did me a favour anyway by asking me a question that gave me the opportunity to re-assess and get a better perspective on my life.

2 Comments

Requesting your thoughts, please

7 February 2009 at 18:15 (Arthritis, Auditory Processing Disorder, Autism/Asperger's, Coping strategies, Doctors, Epidemiology, Hyperacussis, Hypermobility, Menopause, Migraine, Pain, Proprioception, Tinnitus, TMJ (Temporomandibular Joint Disorder), Tourette's / tics)

Howdy folks,

This morning I’m again in pain and rather stiff. I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »

22 Comments

Comfort-able

15 November 2008 at 18:55 (ADD/ADHD, Advocacy, Arthritis, Auditory Processing Disorder, Autism/Asperger's, College/University, Coping strategies, Doctors, Dyslexia, Eye contact, Family, Hypermobility, Love & Acceptance, Migraine, Pain, Prosopagnosia, Stress, TMJ (Temporomandibular Joint Disorder), Tourette's / tics, Work / Employment)

For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show). “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics. To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms. To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities. It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it. But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy). My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?” The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort. It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms. True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!

5 Comments

shrinking

28 September 2008 at 14:27 (ADD/ADHD, Hypermobility, Sleep, Teaching/Tutoring)

My Things To Do list has lain dormant in my purse all week. Not for having forgotten which Very Safe Place that I stuck it into. Not for having too few things to do to bother writing them down (as if).

Rather, because there is so little I can get done in a day. The effective list of Things To Do is reduced to:
dressing and eating breakfast,
working at job #1,
eating lunch and grading papers for job #2,
working at job #1,
eating dinner and preparing something like a lesson for job #2,
teaching job #2,
doing a bit more preparing something like a lesson,
and crashing in bed.

On Saturdays there are exciting departures from this plan: Read the rest of this entry »

4 Comments

Meet the Zebras

21 July 2008 at 6:02 (Diversity, Doctors, Hypermobility, Insects & Arachnids, Invisible disabilities)

A large, black and white striped butterfly nectaring no a purple coneflower

A large, black and white striped butterfly nectaring on a purple coneflower

In the field of medicine, there’s a saying that, “If you hear hoofbeats, think horses, not zebras.” This means that although medical students will learn of a great many odd diseases, some of them are quite exotic (“zebras”), but that most patients’ complaints will resolve to common causes (“horses”).

Which of course does not mean that one won’t encounter “zebras”. Once a very great while there will be someone with the rare genetic disorder or unusual psychological glitch. Mayhap even someone with several rare genetic disorders and unusual psychological glitches! This insect profile post is dedicated to all you readers out there who are “zebras”. (Wave to the crowd folks; let them know that “rare” is not synonymous with “you’ll never meet them”.)

Like medical zebras, Zebra Swallowtails (Papilionidae: Eurytides marcellus) are rare amongst butterflies. They are not endangered, but unlike Monarchs, Cabbage Whites or Painted Ladies, you don’t see these zebras very often. This is a big butterfly, about 6-9 cm (2.5-3.5″) wide. They live in the eastern half of North America, and can be found wafting around the borders between fields and woods or streams. The reason such a large and striking butterfly lives in such obscurity is not for limitations in ecotone; it will live most anywhere but montane and alpine zones. It’s not even limited by breeding season; there are two broods in northern populations, and four broods in southern.

Rather, they are rare because the larvae are monophagous (a fancy word for “only eats one kind of thing” — a parent might lament, “My child is seemingly monophagous upon Goldfish crackers”). Well, plenty of catepillars out there are picky. But Zebra Swallowtail ‘pillars will only eat the leaves of pawpaw trees (Asimina triloba) and other species of the genus. Unlike the ubiquitous callery flowering pear trees or purple barberry shrubs, homeowners and parks managers do not go around planting pawpaws. Unacommodated by the lack of host plants, the butterflies spend their lives beyond the outskirts of the developed world. Only butterfly enthusiasts and rare fruit fanciers who go around planting pawpaws Just Because, or residents of diversified country wilds will have much hope of seeing zebras.

It’s not that medical or butterfly zebras don’t exist, but that you have to know where to find them. You also have to be willing to support their particular needs to have the opportunity to get to know them. But either one of those conditions requires understanding that zebras even exist. Yes, you might even (gasp!) have one in Your Back Yard! It’s true. And now that you have a better search image, I guarantee that you will be much more likely to meet them.

13 Comments

Bits and Pieces

4 June 2008 at 4:56 (Autism/Asperger's, Circus of the Spineless, Communication, Humor/ Fun Stuff, Hypermobility, Prosopagnosia)

I’ll never earn a Good Blogkeeping Seal of Approval* if I don’t get around to mentioning these diverse pieces of news!

I am remiss in mentioning Greg Williams’ wonderful cartooning work; he does a weekly piece called “Blogjam” for the Tampa Tribune (Florida newspaper), where he illustrates people’s stories as described in their blogs. Recently he did one based up my prosopagnosia page, “I’m Strange, You’re A Stranger”.

There are updates on my Hypermobility page for the curious, including handy-dandy medical information links for those who “Need more input!” (An “Ooh, shiny!” for whomever can name that movie reference?)

The latest Circus of the Spineless is up at the Seeds Aside — my antennae are all a-quiver with excitement. Such great reading for wasting time relaxing after a long day’s work, especially if you are also “feeling sluggish” like some of us.

My mum used to tell the tale that as a mere tot I tried to check out (shoplift) a book of dirty limericks. Of course, everyone assumed that I couldn’t read them … those limericks came back to haunt me when Akusai produced the 87th Skeptic’s Circle: Dirty Limericks Edition.

And just for fun, the connection with Asperger’s has been made before, but A. A. Gill does it best of all.

* No, I don’t think there really is a GBSoA — and I certainly wouldn’t apply for a housekeeping seal with the amount of clutter everywhere from these three dozen ongoing projects!

3 Comments

“Made of Win”

28 May 2008 at 1:38 (Coping strategies, Hypermobility, Pain)

Stupid Human Trick # 6,517: spraining my right ankle while walking on flat pavement into my rheumatologists’s office. Actually, my ankle rolled over sideways and I tried to step onto the dorsal (upper) side of my foot. The good news is that I got it iced immediately. I sat there on the bench seat by the doctor’s desk, one foot on the ground, and the other leg folded sideways with my foot on the bench by my hip. “You really are hypermobile, aren’t you?” she asked.

“Yeah,” I sighed, “hence the sprained ankle and shoulder subluxations and tennis elbow…”

She gave me an extra prescription pad sheet with a list of things to do, including one that said to use a cane. Since I was just about to go on a trip, that sounded like a good precaution. While getting some medication, I bought a new elastic bandage, an ankle wrap, and a cane.

Not just any cane, one with a built-in small compass (cheap, but it works), an equally cheap magnifying site (but I did use it to read a sign I couldn’t decipher otherwise), a wrist strap (an excellent feature, so I don’t leave it somewhere), and best of all, it folds up! This is truly “made of win”, as the kids would say.

The eldest was so impressed that I have been instructed to buy another should they be restocked. I also packed my weight-lifting gloves, as they allow for a better grip on luggage, and even give me a little sun protection: Read the rest of this entry »

5 Comments

In which I am Stiff

22 April 2008 at 19:50 (Arthritis, Hypermobility, Pain)

It is morning after some afternoon yard work (a couple hours spent lopping back a shrub by 2/3, and then cutting down those branches for pickup), and I am waiting for arthritis medicine to kick in.

Then I realise that it has. Enough time has passed, and this is “better” (at least for the medicinally-mediated improvement). Which-all leaves me wincing, and wiping wet corners of my eyes on my shoulders. I am tearing up less from pain than frustration-with-pain. When I see my rheumatologist in a few weeks, I will have to explain that pain meds are not working so well, as even post-medicated I am in pain much of the time. I cope with it and “keep on truckin’ “, which is not to say that it doesn’t affect me. (I haven’t even been tracking my blood pressure, which I should be doing now that we actually have a mini-clinic on campus.)

Today I am not just creaky and feeling nauseous before breakfast and after breakfast + meds, but I am also stiff. It shows in the halting progress of my first foray down the stairs and the bumbling around the kitchen. (Thank you, hubby, for making the coffee! Again.) I fumble, and more than once drop things, and then in Slow Motion must bend over to retrieve them from the floor. Knees locked, legs straight, I reach down with my fingertips straining to touch the floor and pick up my sock.

Now, you would think that Read the rest of this entry »

11 Comments

Natural Therapy

19 March 2008 at 5:24 (Arthritis, Hypermobility, Pain, Physical impairments, Sleep)

Last night I was digging through a giant box full of 35mm transparencies (slides) looking for specific pictures for a new class I’m teaching in a couple of weeks. Naturally, the effort took far longer than I anticipated, partly because I kept finding other interesting pictures, such as vacation photos. I finally did find what I was looking for, but once again, it was after midnight before I got to sleep.

One picture was of me back in 2000 when I was building our backyard pond. Kitted out in a tank top, a pair of knee-length boy’s cargo shorts, a pair of leather gloves and my hiking boots, I was hardly a fashion plate. But boy was I buff. I had muscles, and it showed because I was holding a very large chunk of limestone up above waist level. The long rock was about six inches / fifteen centimeters thick and wide, and stood on end it would have reached my hip bone. The piece weighed about 90 pounds / 41 kilos, which is less than I’ve ever weighed as an adult, so hardly something braggable in the world of bench-pressing barbells, but it was still a respectable lunk of solid rock to be schlepping about.

Nowadays the arthritis slows down the yard work considerably. I can’t work as long, and it takes me longer to get going in the morning because I have to eat before taking my meds. Continuing to do some form of weight-bearing exercise is important to avoid the osteoporosis that runs through my maternal line. But I also have to take care to protect my joints against non-Tennis-playing Elbow and the stupid shoulder subluxation.

I have to force myself to work out at home or the gym during the winter. Frankly, this winter I’ve been especially lax in doing so, partly because by the time I get off work I’m so tired and achey I can’t bear to go to the gym.

It’s funny though, how if you have a physical impairment, what would ordinarily be getting exercise somehow gets turned into Receiving Therapy after its trip through the “disability grinder”.

The last time I visited the “Physical Terrorist” was a few years ago when I went to the university clinic for something-or-another. I left with some over-photocopied handouts describing exercises, and a prize (better than any shiny piece of costume jewelry from the dentist’s “treasure chest”), my beloved rice sock for re-heating and draping across sore places.

The PT encouraged me to come back for more therapy, but I found the exercises to be sufficiently effective on my own. I’m not keen on people manipulating my body. Other people think that if my joints can move within the normal range of motion, that I must be okay. But in truth it means that I’m actually injured and stiff because they are reduced in range of motion from my usual hypermobile state. It’s also hard to convince them that I normally have oddly-placed or large bruises about my body, and that I really can’t remember getting them, and that “No, nobody is abusing me, thanks for asking.”

Any kind of therapeutic exercise is more fun, easier to do, more beneficial, and more likely to be engaged in and maintained if it is combined with one’s daily activities, rather than done strictly as PT or gym exercises. I continue to schlep my briefcase or luggage-size tote with my teaching references around campus (frequently switching which side I’m carrying it on), and try to get in as many staircases as the routes require during the day.

The turnabout is that even dull exercises can be more inspired or inspiring if I think of them as antecedants for doing the fun stuff. I need to start stretching out and doing dumbbell reps again, because spring lurks around the corner.

The daffodils are poking up through the mud and leaf litter, reminding me that I need to rake. And once gardening season starts, I can get in lots of stretching, range of motion exercise, weight-lifting, deep knee bends et cetera, just from fun things like turning over and hauling compost, digging, planting, weeding, deadheading and all those other fun “chores”.

I’ll just be doing them for an hour at a time now, instead of eight hours solid. I hear it’s warmish and sunny tomorrow …

3 Comments

Random bits from bed (thoughts before arising)

27 February 2008 at 14:56 (Arthritis, Hypermobility, Menopause, Pain, Sleep, TMJ (Temporomandibular Joint Disorder))

I tossed and turned all night.

Well, not really. Tossing and turning implies far more bounciness and energetic mobility than I had. Rather, I woke up every couple hours when it was time to shift to another sleeping position. There were no comfortable positions to be had (there never really are), but with enough pyjama-straightening to remove the deadly little wrinkles pinned under my hips and shoulders, by shifting the spare pillows to completely pad between my bony knees and feet, and plumping up my head pillow again, I could reach a level of acceptable discomfort and fall asleep again.

I get plenty of REM sleep; in fact, it seems like all I do is dream because any disturbance wakes me from a dream. (An article in Scientific American describes just how more interrupted sleep results in longer and more intense dream periods.) I just don’t know that I’m getting enough deep, restful sleep. When I’m sick I’ll be in bed for eight to ten hours more-or-less sleeping, but I still seem generally stuck at six-hour nights. I can’t remember the last time I slept through the night, but it was several years ago.

The good news is that Read the rest of this entry »

4 Comments

Weights and Balances

27 December 2007 at 2:31 (Arthritis, Coping strategies, Hypermobility, Migraine, Pain, Sleep, Stress)

Today I joined hubby for a short visit to the health club. I’d not been in a large number of months, but decided that this would be a good opportunity to scope things out with regards to what they had. I need to get back into the habit of getting some regular exercise. I figured that scoping things out ahead of time and figuring out what I needed, and when I was going to go, would be a good way of easing back into the habit. Why wait until New Year’s Day to make a resolution?

There are a number of good reasons for me to get some exercise, but an equally weighty number of reasons why it’s been increasingly difficult to do so. Read the rest of this entry »

5 Comments

It’s a Real Pain

16 December 2007 at 0:53 (Arthritis, Hypermobility, Migraine, Pain, Personal change, TMJ (Temporomandibular Joint Disorder))

Bath time. I steady my balance by holding the sides of the tub, and ease myself into the hot water. There I play “What’s My Bruise”, trying to figure out how I acquired all the motley souvenirs. There’s a large turquoise blodge shaped like Antarctica on the top of my right foot, a constellation of dark purple marks on my left knee, several random fading-green spots on my forearms, various dull plum-coloured dings on my thighs and calves, and a deep tissue olive-green zone the covers most of the fleshy area between my left thumb and the back of my hand. As usual, I have no idea how or when these happened. I bruise easily, and between my joint hypermobility and crappy proprioception I’m always bumping into things. There’s nothing to do about the bruises, but I monitor them to make sure that things do heal up and disappear within a couple of weeks (my mother had diabetes), and to watch for infections (like the ingrown toenail cellulitis for which I just finished a round of antibiotics). And so it goes.

Unless you have a rare CIP mutation (Cogenital Insensitivity to Pain), you’re familiar with aches. We’ve all experienced the ordinary headache, the run-of-the-mill bruised limb, the annoying paper cut. These “owie-boo-boos” are annoying and ephemeral. Many people experience severe but thankfully brief* pain with childbirth or traumatic events such as broken bones or appendicitis. Yet none of them begin to describe the issues faced by those with chronic pain problems such as arthritis or TMJ, or the re-occurring severe pain of migraines.

We tend to view pain as strictly a physical problem, treated with various analgesics and/or physiotherapies. You hurt, you take treatment, the pain goes away, your wound heals, the event stops. That’s the way it’s supposed to work, and if it doesn’t, then you’re not doing it right. We even have child-birth classes to teach people the “right way” to have pain (yes, I say “people” because their partners are there to learn how to reinforce the appropriate responses during L&D).

But chronic and re-occurring severe pains don’t follow that socio-medical model. Read the rest of this entry »

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Small Comforts

2 August 2007 at 2:37 (Arthritis, Attribution Errors, Coping strategies, Hypermobility, Migraine, Pain, Proprioception, Stress, Tinnitus)

“You know when you have a few good days and you begin to wonder whether the bad days could have possibly been as bad you imagined they were and then you have a few bad days and wonder how on Earth you ever were able to do the things you did on the good days? No? Well, I do.” ~ The Goldfish

It’s a pain. No, it’s many pains.

I’m getting over a migraine, which makes me just generally tired and gives me brief flashes of visual auras, pain twinges, inconsistent light sensitivity, and word retrieval problems when speaking. This rather much overshadows the arthritis business. I’m also trying to get a bunch of errands done and phone calls made prior to packing for a trip, which unto themselves are stressful activities. I also forgot to take my ADHD med this morning, so I’ve been in a what-was-I-going-to-do? fog all day long as well, above and beyond everything else. “Ain’t we got fun.”

But after I tracked down two cats and took them to the vet (putting the suddenly-hexadecimal cat into the carrier is always entertaining — picture here ), I went for my semi-annual tooth cleaning. I have no idea if I’ve had this particular dental hygienist before, having no memory at all for faces not seen daily, but she was nice enough to shut the window blinds for me on account of my migraine “hangover”. I was also due for some dental x-rays (roentgenograms), so the she draped me with the lead apron. Although having the bite-wings stuck inside my mouth is less than fun, I always enjoy the comforting pressure of the lead apron.

In fact, years ago when I realised that a lead apron was such a fabulous deep pressure aide, I got one from a retired dentist. When I stagger to bed with an incipient migraine, I compose myself in the dark room and drape it across my thorax. I’ve also used it on nights when I just can’t seem to settle down because I feel twitchy on the outside. The lead drape is one of several small comforts that I have found useful. Everyone deals with stress in their life, both the eustresses (the good sorts that help “push” us in beneficial ways) and the distresses (the bad sort, which need no further introduction). But we all differ in the things we are stressed by, and how those stresses affect us. My distress-reduction is accomplished by several means. Read the rest of this entry »

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Oops. Ouch.

27 May 2007 at 19:52 (ADD/ADHD, Arthritis, Coping strategies, Hyperacussis, Hypermobility, Insects & Arachnids, Migraine, Proprioception, Tinnitus, TMJ (Temporomandibular Joint Disorder), Tourette's / tics)

Here’s one of those quandaries: Which is worse, accidenting one’s self frequently, or not responding well to anæsthetic?

It’s not that I react badly to local/topical anæsthetic, just that I don’t react to it much at all. But I’m getting ahead of myself. Which is not unusual because I’m often unsure of where I am in space.

Being chronically uncoördinated is technically known Read the rest of this entry »

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