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Thumbs Up: Life Hack for Medicine Bottle Caps

23 July 2017 at 18:36 (Arthritis, Coping strategies, Spoonies)
Tags: Arthritis, Coping strategies, dyspraxia, life hacks, medication, medicine bottles, safety caps, Spoonies

Here’s a handy life hack or all my spoonie, arthritic and / or dyspraxic friends out there who struggle to open the %$#@! medication bottles dispensed with push-down-and-turn child-safety caps (even when you don’t have young people around).

This hack works with those bottles that have a sort of sliding inside cap.
You know, the one you tried removing, only to discover that the outside cap now no longer fits on the bottle. Cut To Scene: pliers and mangled inside cap, feeble chair-arm thumping, weeping, sore hands, and tiny pills escaping everywhere.

The beauty of this approach is its simplicity. All you need are a tack and a pusher. The tack might be some thumbtacks / drawing pins; I found upholstery tacks worked better on my medicine bottles. For the pusher, either a strong thumb or spoon suffices.

Push the tack into the [outside] top of the cap, halfway between the center and the edge. That’s it.

NOTE: make sure the point of the tack is long enough to pierce well into the inside cap.

Because my thumbtacks weren’t long enough we used the upholstery tacks, which just peeked through the inside. I decided this wouldn’t be too much of a safety hazard for myself. Otherwise one could plug over the pokey bit with say, a bit of the red wax from a Gouda cheese, or Sugru™.

Two medication bottles in front of a weekly pill-minder. The left bottle is open, with the upside-down lid showing a tack point barely poking through. The right bottle is closed, showing a tack inserted halfway between the center and edge.

This bottle-tack-hack originates from the Instructable “How to Make Evil Childproof Caps Easy to Open” by SFHandyman. His article explains how to simplify other types of caps, such as the squeeze-and-turn, line-up-arrows et cetera.

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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!

11 Comments

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

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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Stupid Irony!

23 August 2010 at 4:35 (ADD/ADHD, Arthritis, Auditory Processing Disorder, Autism/Asperger's, Deaf / Hard of Hearing, Raynaud's Phenomenon, Tinnitus)

Someone defined poetry as “life condensed”. Sometimes I think that disability is life magnified. Today’s lens is Irony:

I dropped my reaching tool behind the bed where I … struggled to reach it.
Forgot to take my ADHD meds.
Was too stiff to pull on my elastics: the wrap for my elbow, the two pads for my knees, and the fingertip-less gloves.
Nearly in too much pain to remove the child-safe cap from the arthritis medicine.
Couldn’t see to find the wee screw that holds in the lens to my eyeglasses.
(Similarly, when my ex-husband couldn’t hear his hearing aid squealing.)
Couldn’t understand the voice-mail reminding me of a follow-up visit with the audiologist.
Being unsure if that noise I heard in the audiologist’s testing booth was one of the test tones, or my tinnitus.
Asked a random store clerk to open the box and unpeel a bandage wrapper so I could stop the bleeding of yet another torn cuticle and pay for said bandages.
Sat on the grocery floor because I’d forgotten to wear my knee pads that day, and had to stock boxes of aspirin and arthritis meds.
When discussing my difficulties with social interactions with a counselor and mentioned that I thought I was missing things, I was unable to tell just what it was that I was not catching!

And so on, and so on. Feel free to add some of your own!

13 Comments

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.

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“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

Your irony for the day

19 December 2009 at 5:26 (Arthritis, Pain, Random Thoughts)

My knees hurt from stocking arthritis medication.

1 Comment

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

Hanging around the Web

4 July 2009 at 0:22 (Accessibility, ADD/ADHD, Architecture/Universal Design, Arthritis, Circus of the Spineless, Disability Blog Carnival, Family, Geeks, Home stuff, Humor/ Fun Stuff, Insects & Arachnids, Migraine, Ooh, shiny!, Pain, Sleep, w00t!)

A shiny robot spider hangs upside-down from a metal mesh

My son and I recently hauled a long dresser+mirror up two flights of stairs, and I cleaned up the master bedroom in preparation for the return of the new baby & parents from the hospital. The downside of course is that after a day of labor, I must spend a couple-three days recuperating. (In other words, I used up all my “spoons”, down to the last demitasse.)

I’m also on Day 2 of one of those low-grade-three-day migraines. Right now it’s manifesting as misreads, which when I catch myself is kind of entertaining:

a post on wheelchair “fails” [falls] at Wheelchair Dancer
“Disability Studs” instead of Disability Studies
“Autism Hug” instead of Autism Hub
“Crack Wicks” instead of Cake Wrecks

In light of all that, I thought I’d share some interesting reads/cool finds on the Web recently:

My sleep-deprived daughter would be envious of ant queens, who spend nine hours a day sleeping, while the workers must squeeze in micro-naps.

From the world of delightful architecture, an adult tree[less] house shaped like a bee skep, made of recycled lumber (wheelie adaptation not included).

The CitizenM hotels have the most amazing showers, which look like Star Trek transporter pads. To start the shower, you simply shut the door. I don’t know if they’re large enough for a wheelchair transfer to a shower seat, but with the zero-clearance there’s a chance of it (maybe Dave knows). Want! (Or at least the trés geek LED shower head that changes from blue to red when your water’s hot.)

Reimer Reason posted It’s a Family Reunion! for the most recent Disability Blog Carnival.

In further hexapod news: while I was distracted by our little geekling, Bug Girl has been faithfully covering Pollinator Week, including important information about CHOCOLATE. For more funs, Cheshire has teh latest Circus of the Spineless up.

And of course, what would a list of fun be without a LOLcat?

Six white kittens lined up and looking at the camera, while a seventh is distracted with a play ball. The photo caption reads, "PUZZLE PICTURE Find the kitten who has ADD."

5 Comments

What she said was, “Aquacise”

3 July 2009 at 15:33 (ADD/ADHD, Arthritis, Coping strategies, Pain, Random Thoughts)

Random thought:

When my rheumatologist said to get more exercise,

I’m not sure she really meant

that I should be hauling meself up & down stairs

over and over because of my ADHD forgetfulness.

Comments Off on What she said was, “Aquacise”

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

Cartfuls of Spoons

26 May 2009 at 5:06 (Accessibility, ADD/ADHD, Advocacy, Arthritis, Auditory Processing Disorder, Community, Deaf / Hard of Hearing, Gardening, Inclusiveness, Invisible disabilities, Physical impairments, Work / Employment)

They’re out. Or, Out. We have the exquisite “Privilege of Being Clouted By Cabbage” and are navigating the hazards of the supermarket. When things are done the way they’re supposed to be, going to pick up a few groceries is just as boring, or as Dave discovered, lonely, for disabled people as much as it is for everyone else. But sometimes it isn’t, such as when Wheelchair Dancer finds herself navigating the hazards of anonymous donors that leave awkward brochures under her windshield wiper, and then dealing with the even more awkward social fallout with the clerk who’s assisting her.

People with a variety of disabilities come to the store to get groceries, movies, dry cleaning, take-out food, postage stamps, floral arrangements, and because it’s this time of year, garden plants, which is why I am working there. I shouldn’t be surprised, but I am bemused to report that I realised that people with physical ailments are shopping at the store alla time! After all, that is why we have some of those electric carts, in addition to automatic doors, ramped paving, lower check-writing stands, supposedly-accessible bathrooms*, et cetera.

Most of the time I just interact with the public as a “normal” garden center employee, but sometimes we are also interacting with that subtle overlay of disability, which entertains the social scientist part of my brain.

Being the token horticulturalist, I answer questions, help customers plan flower beds and suggest suitable plants for locations. In addition to working the register, watering, deadheading and “facing” the stock (moving pots towards the fronts of the benches to fill in holes left by customers), I work with the others to come up with æsthetically-pleasing displays of the plants. (Although there is no way of hiding the fact that the corporate HQ plagued us with a plethora of Pelargonium, a visual red tide of geraniums.)

I’ve seen plenty of plant displays at a variety of other stores, and have found their long lines of benches to be annoying. It’s not just that endless tracts of pink & purple Petunias, orange & yellow Marigolds, and red Geraniums are mind-numbingly dull to the point of dampening any sort of inspiration for coming up with container or bedding combinations. It’s that the long lines of “benches” block traffic flow. You feel like you’re trudging up and down the maze of a ticket queue, unable to grab some pots of more-interesting Corkscrew Rush or Calibrachoa tha are hidden over there two aisles over. It’s hard to break out of the march to exit stage left to the register (till), or even quit to go over to the entrance into the store. The long lines of benches are especially boring for children, who have little more than a view of the edges of the benches and the pots, with little respite in sight. (I’ve taken to offering children cups of the cold water from our water cooler barrel, as hot, thirsty children are cranky children.)

Worst, when at these other stores run out of available bench space, a lot of the pallets of potted plants just end up dropped by the pallet jack where-ever there’s room on the ground. This means that the aisles are not really planned, so sometimes there are narrow dead-ends, or aisles blocked by broken bags of mulch, or the plants are simply hard to reach because they are way down on the ground or are way deep in the center of the pallet. They are not accessible.

For a few days, we too of a dozen pallets lined up at the edge of our lot, albeit with sufficient aisle space. It really “made my brain hurt”, because the plants had been shipped all higgedy-piggedy, with shrubs, grasses, annuals and perennials all mixed together. There were Daylilies in four different places around our lot! The flats of shade-loving Wax Begonias and Impatiens and sun-loving Verbena and Vinca were all jumbled by species and color! (And OMG, still more Geraniums. And Creeping Phlox, which only looks nice when it’s blooming, and now we have enough to landscape a highway interchange.)

But thankfully, I’m not the only one who has a strong interest in making the endless flats of plants look more interesting, and be more accessible. We’ve been stacking pallets or propping them up on cinderblocks to put the plants into easier view and reach. (Plus, they’re also easier for us to clean and water — ergonomics, w00t!) We’ve been making sure that the aisles are frequently broken up into side-paths, and we try to keep the aisles 3-4 feet wide so carts, strollers and wheelchairs can get through. It seems to be working well; every day we get compliments about how good the plants look.

But what makes this place pleasant to work for is the concern for helping our customers. Sure, it’s store policy to be helpful (doesn’t every business flog that slogan?), but we are glad to break from running the register or watering to carry things out to the car, or load up bags of mulch and rock, or show you where the Verbena is, or explain the differences between the four varieties of white Petunias. When someone has their hands full, we grab some empty flats, and pull carts (buggies, trolleys) over to make things easier.

It’s this “serve everyone” approach that makes helping people with various disabilities so much easier. One of the other clerks knows American Sign Language, so Deaf customers are sure to look for her (my ASL is rather limited). When the gentleman in the power chair thanked a coworker for carrying stuff out to his van, I was tickled to overhear him say, “No problem! We do that for everyone.” Because we do.

Sometimes the “disabled community” moments are colored in large brush strokes. An older man in a wheelchair came by in search of some herb seeds, accompanied by two women who were of the “care-taker” rather than “personal assistant” mentality. Although neither said anything obviously untoward, there was still a patronizing aura, that his desire to go shopping was being honored but that they were still “humoring” him. It made me uncomfortable, and I kept trying to scan the interactions in the triad to figure out what was going on.

But the women were intent on asking me questions of their own, even as they were simultaneously going through the motions of helping him. “Here’s someone who can help you. He’s looking for some seeds. Tell her what you’re looking for. Do you have any seeds? Do you remember what it was he wanted? Ooh, don’t you just love those pink flowers? Isn’t that what you got on your desk?”

“Well I dunno, but it’s not flowering any more. Was you looking for parsley? He was wanting to grow some stuff from seed. You sure gots a lot of plants out here.”

Trying to track all this verbiage flying by was making me dizzy, and I just wanted to focus on finding out what the man came to get. The customer himself was having some expressive difficulties. (Who wouldn’t have, being around those two all day!) I knelt down on a knee so I could speak with him face to face. I had to. I had to disengage myself from the chatty care-takers who were now trying to ask me random questions unrelated to the needs of my primary customer. I had to be able to focus on what he was asking for, which meant watching him speak. And I had to honor him personally as the customer, not as some second-class accessory.

My knees cracked noisily, and I knelt down on one knee, and we conversed, just the garden center clerk and the customer who wanted parsley seeds, and who considered and then decided against the Doubled-Curled or Flat Italian Parsley seedlings.

After that moment, I stood back up and we were sucked back into the vortex of the chatty care-givers, who asked me some confused questions about houseplants, and then led/followed him over to the main store entrance. I hoped he would be getting the things that he wanted this evening.

Sometimes the community moments come by quietly. I was checking out a couple flats of annuals and several perennials for a woman, cleaning off some old leaves and blossoms and chatting as the register processed her credit card in its own slow time.

“This is going to take me several days to get it all planted,” she offered.

“Well, that’s always a good thing to do anyway,” I offered, affirming her wisdom. “It’s those marathon gardening sessions that break our backs.” The register finally finished hiccoughing through the electronic transmission and spat out her receipt. I picked up her potted rose bush, rested it on a hip, and then deftly tipped up the flat of annuals to balance them on my other hand. (It only sounds tricky; in reality the flats are just boxy grates, and I can curl my fingers into them.) “Here, I’ll carry these out for you,” I said, leaving her to handle her purse and a couple quart pots of perennials, then added, “I can’t garden for ten hours solid since I got arthritis.”

“Thanks. I have RA and can only do so much at a time.”

“Ah, yeah,” I commiserated. “You have to make dinners ahead, because the next day you’re too exhausted from gardening.” She nodded, already tired from just the idea of the ordeal ahead. “It’s fun, but you just run out of ‘spoons’!” And then I loaded things into her car and we swapped the mutual thanks. My attention turned to the gardening work of my own, left uncompleted or never even started. Oh, and errands. Here I was at the market nearly every day, but I kept forgetting to get my arthritis medicationn refilled!

“Hey Andrea,” piped up one of my coworkers, “it’s nearly time for you to go on break.” This clerk is a good guy; he’ll remind me when something is coming up, he’ll remind me when it’s time to start, and even after I’ve forgotten it. He asks me if I remembered to clock in, and reminds me (several times) to copy down the next week’s schedule before leaving. It sure is wonderful to have garden center clerks who are so helpful, especially when you when you’re having seriously distracted & forgetful AD/HD days!

* I’ve never navigated the women’s restroom in a wheelchair, but there are still the stupid doors to wrangle …

4 Comments

Hotbed of Apathy

19 May 2009 at 5:02 (Arthritis, Cats, Geeks, Home stuff, Humor/ Fun Stuff, Pain, Sleep, Stress, Teaching/Tutoring, Tinnitus, Tourette's / tics)

*sniff, sniff*

“You sound sick,” stated my daughter’s fiancé, M.

“I can’t be sick,” I mumbled in protest, and honked into a tissue.

“Redunculus; you’re sniffling.”

“I can’t be sick; it was Mr W’s day to be sick,” I explained. “He got first dibs on being out sick today … If all the classroom staff members who were sick stayed home, there wouldn’t be anyone left!”

I’m sure the students wouldn’t have minded having some of their classes cancelled. But no, we slogged through the day, hour after dreary, mind-numbing, O-PLZ-STFU hour. It was, I decided, a veritable hotbed of apathy. The lead teacher was battling a sinus infection, and I was suffering from what felt like temporal phase-shifts. And my aches ached. My ears were ringing and making sharp pains and I was having dizzy spots and nausea. I was cold and then would have a sneezing fit and then be hot, and would have some odd spastic tic and then be cold again. They cannot invent a vaccine for this shit any day too soon.

It’s worse when you’re feeling crappy and working 60 hours a week. But it seems like every few days I discover yet another person who’s working multiple jobs, the latest being a cashier with two jobs and Lupus. (Maybe what the economy really needs is for everyone to take a week off just to get some rest already. All in favor say, “Aye!”)

And then there’s the strange stress nightmares I get before a semester starts, going through an interminable dream about teaching 3rd grade but starting the same day the students do, and having an unworkable U-shaped classroom without a chalkboard or whiteboard, and the women’s bathroom stalls all cost 75 cents in quarters to use, and …

If you, too, are ready for a diversion, our favorite engineers (previous post) have a new video up on Advanced Cat Yodeling. M just about ROTFL, as he has been Yodeling with his cats for a long time, and favors the Machine Gun Kiss™ approach.

2 Comments

Sleep Bends

8 March 2009 at 22:36 (Arthritis, Migraine, Pain, Sleep, Tinnitus, Work / Employment)

Maybe you’ve heard of “diver’s bends”: decompression sickness that affects divers (or fliers), resulting from gas molecules that collect into bubbles in the body, much like the carbonation that results when you pop the top on a container of soda.

Waking up lately has been similar to the bends, albeit not for the same reasons, nor as deadly (I’m not making light of a serious medical issue). But for whatever reason, many of the symptoms are quite similar: joint pain, headaches, nausea, dizziness, muscle fatigue, seeing spots, and sometimes numb or tingling fingers.

Not surprisingly, it’s hard to get out of bed. I lay there, hoping it passes quickly. Rarely does the dizzy-nauseous aspect does abate after 15-30 minutes, and sometimes the extreme nausea lingers all day and then I’m taking meclizine because the school hallways remind me of an unpleasant trip on the English Channel ferry. Not only does this make it hard to get to work on time*, but it also makes it difficult to get downstairs and eat some breakfast so I can then take my regular morning meds for pain and such. (Yes, irony, and the not-so-terribly-humorous sort.)

The last time I had a particularly hideous vertigo attack that landed me in the ER (A&E), my GP later decided it was an effect of the previous day’s migraine. I don’t know if there’s such a thing as “chronic migraine-related sleep bends”, but I sure as hell wish it would go away, ditto the tinnitus that’s been particularly obnoxious lately. It’s making it difficult to get to job #1 on weekdays, or temporary job #2 on Saturdays, and by evening I’m so exhausted I don’t know how I’m going to do potential job #3 (for which I’m interviewing on Wednesday).

Maybe I should check back with my GP, so see if there’s anything he can recommend besides, “Have you tried nibbling on some saltines … okay, some gluten-free crackers?”

* My record for morning hygiene, dressing, packing lunch and getting into my car is just 20 minutes, but that only happens if the night before I have parcelled bits of food into wee plastic boxes, and also done up all but the top two shirt buttons (to reduce arthritic fumbles), and tracked down and laid out all of the components for my change of clothes. For some reason, choosing clothes or lunch food is way too mentally taxing and manually difficult in the morning, compared to something “easy” like driving in traffic. Don’t ask me why.

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

Sheep Fear Me

20 December 2008 at 6:40 (Arthritis, Coping strategies, Weather)

It’s time to get up and get dressed for work. I know it is. But I don’t want to get out of bed. Not that I’m particularly warm under the covers (my daughter did warn me this was the coldest room in the house, despite central heating). But even wearing thermal-knit pyjamas and lamb’s wool slippers and huddling under two quilts and a heavy wool blanket, I’m still cold. Finally I drag myself out of bed, promising a good thaw in a hot bath.

I swear my very presence in the tub drops the water temperature; it’s all too quickly tepid and I must dry off and dress:

Wool socks
Wool skirt when not wearing slacks
Wool sweater (jumper) or vest (waistcoat) over a shirt or turtleneck
Wool blazer over the wool sweater
Wool greatcoat and scarf and Thinsulate-lined suede gloves

Duly bundled in all those layers I lurch out to the garage into my car, where I turn on the heated seat. I don’t know which Volkswagon engineer came up with the idea of building a heating pad into car seat upholstery, but it’s brill.

At work I remove the long coat and scarf, and (until it’s time to start doing documentation) swap my outdoors gloves for a pair of mechanic’s gloves. Although they help keep my hands warm, I really need to order some arthritis gloves without the fingertips so I can handle papers.

This week it’s been exceptionally cold, and the men at school were wearing warmer long-sleeve shirts. But I’ve been piling on multiple layers for months. There’s so much wool in my wardrobe you’d think I was a wolf trying to infiltrate a herd of sheep. (We would eat lamb too, were it not priced as dear as sirloin.)

Despite all this, my nails turn a dull purple, and sometimes the rest of my digits don’t have much color at all. My pinkies go numb, and I despair of getting some skin cracks to heal. Even during warm weather, just a few minutes of using the electric string-trimmer to clip the edges of the lawn makes my hands numb.

I’m not anemic. Rather, my rheumatologist says it’s Raynaud’s. Swell. I’m doing all the right things for helping maintain my core temperature, and she’s given me some medication to try (because you know, I don’t have enough pills to swallow).

Well, it’s time to zap my rice-sock in the microwave to warm me up enough to get to sleep. And I know that if it gets really cold tonight, one of the cats will crawl under the blankets with me.

But any sheep nearby had best beware: my daughter is learning how to knit!

4 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

Backwards Symphonies

16 August 2008 at 1:57 (ADD/ADHD, Arthritis, College/University, Home stuff, Hyperacussis, Migraine, OMG, Pain, Sleep, Special Education, Stress, Teaching/Tutoring, Tinnitus, Uncategorized)
Tags: Uncategorized

“It’s been a long week — I bet you’re ready to decompose.”

I stared at my husband, blinking through the mental fog of too-many-jobs-not-enough-sleep.

“I’m not ready for the compost pile yet,” I replied, trying to figure out what his latest malapropism was meant to be.

“Or whatever the term is,” he added.

My brain finally catches up. “Decompress,” I answered.

What an incredibly long week. I can’t remember the last time I had one like this, and in my over-busy world that’s saying something.

Wednesday last week I had a pneumonia vaccination, which left my arm so sore I couldn’t take off my jogbra without assistance, nor even get my hand up to head level until the weekend. Moreover, Read the rest of this entry »

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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 »

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Budget Issues

2 April 2008 at 0:30 (Arthritis, Coping strategies, Pain, Physical impairments, Sleep, Stress)

There are a lot of difficult things with getting used to a condition that causes regular pain or chronic fatigue. Part of it is just getting used to the idea that there is no quick fix, that this is the New Normal in our lives.

Part of it is realising that medication and treatments will alleviate some of the pain, but that they don’t always eliminate it. Even if we’re not feeling horribly crappy, that doesn’t mean we can just blaze through the day like we used to. The reductions in overall capacity from tiring and/or painful conditions create additional problems that are not always easy to anticipate.

There are the social issues, of not wanting to sound whiney, but also of needing to advocate for ourselves, and either forgo doing some things or request accommodations for others. Meanwhile, everyone else is still working on the idea that relieving pain means making-it-go-away, and that “if you’re not in pain, then you can do everything just like normal”.

There are weighing issues of prioritising things. When we don’t fully adjust to this new normal, it can be partly denial, and partly not realising just how much the condition permeates things in life. It’s one thing to say, “I’m hurting, I’m not going to do this right now,” or “Doing that causes me too much wear and tear so I’m going to do this instead.”

But it’s quite another to realise that we can’t keep putting things off until “I have more energy” or “I have more time” or “When I’m feeling better in the afternoon”. In reality even though there are better times of day or just better days, and even though we find alternative means, what we find is that we still can’t do all those things.

We can do them, but we can only do some of them. When we’re having a good afternoon or a better day, we then find that we have a backlog of Things To Do. In truth, there was no way we could really could do all of them previously in our lives, which is why everyone has those long To do Lists in the first place!

There are budgeting issues of allotting energy. In the new normal, we not only can do less because we have fewer good time periods, but also because we have to pace ourselves. If we push ourselves too hard, then we crash and feel worse than we would have otherwise, and will just get even behinder. (And both the crashing and the getting behinder result in being grumpier, making us and everyone around us miserable.)

What makes pain such a bastard is not just the direct issue of hurting — a lot and frequently, or variably and all the time — but also the secondary issues of pain causes stress and stress aggravates pain and the dreadful feedback loops.

Chronic stress-pain loops can result in not having much appetite (so not eating regularly or nutritious foods), being more sensitive to the ordinary incidental pains in life as well as the chronic issues, getting more easily stuck in anxious, obsessive or depressive states, having depressed immune responses, and of course, it can create the whole horrible pain-bad sleep feedback loop. There’s nothing like chronic pain to make one realise just how inter-related psyche and soma really are.

Chronic issues mean not having much in the way of energy reserves. It can be really easy to fall into a bad habit of “cheating” the budgeting or pacing by relying upon crisis energy. Lots of people (especially those with AD/HD) rely upon the “salvation by deadline” to get them energised to do or complete a task. But this kind of crisis energy is really hard on the body because it relies upon the adrenaline from the sense of crisis. Once that adrenaline rush is past, we crash. It’s a way of pushing ourselves that is counter-productive in the long run.

People who are able to integrate the new normal successfully throughout their lives are those who do best with chronic issues. The novelty fades and the issue is simply another part of their life. Acceptance is not the same thing as giving up. We can accept that we have problems without abandoning efforts to find new ways of improving things.

Prioritising and budgeting energy are important components of the adjustment, just are various therapeutic approaches and regular stress management. Energy prioritising and budgeting are especially important because they are less about what we cannot do, and are more about enabling ourselves to do things that are important.

Whatever “important” gets re-defined as.

“But pain… seems to me an insufficient reason not to embrace life. Being dead is quite painless. Pain, like time, is going to come on regardless. Question is, what glorious moments can you win from life in addition to the pain?”
~Lois McMaster Bujold

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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 …

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Pain “All-Sorts”

5 March 2008 at 6:04 (Arthritis, Home stuff, Migraine, OMG, Pain, Pseudoscience, Tinnitus)

Damn anthocyanins!

See what a college education does for you? It allows you to cuss using polysyllabic words.

This morning I awoke with an “icepick headache” type migraine as well as stiff arthritic joints. Then as I was pulling my large, soupy bowl of near-boiling oatmeal-with-blueberries from the microwave, I spilt it all over my hand and wrist, the shelf, and of course, the cream-colored carpeting. After running cold water on my hand for a couple minutes (it’s fine, if tender — I’m not wearing my watch for a couple of days), I had to go back and swab up the spill. The purple anthocyanin stains from the dried-then-rehydrated blueberries will be quite the test of my carpet-cleaning spray.

Meanwhile, the physical pain of ice-pick migraine has bugged me off and on all morning. The good news is that although it’s horrible and intense, it lasts no more than a minute. The bad news is that it tends to repeat periodically through the day. Made a point to take some more medication before my exam tonight.

~//~

Glancing through newsbits was less entertaining — there’s a reason why I usually read blogs in the morning and news in the evening. (I do glance over the headlines in the morning, just in case western California decides to crumble into the Pacific or something.)

Oh the conceptual pain … it’s sort of thing that Stephen Kuusisto calls, “the neurological equivalent of a foot cramp”. This is from Time magazine, “Huckabee’s Texas Evolution” (hyperlink is to single-page, text-only version), which describes US Republican presidential candidate Huckabee and his support for intelligent design, and the upcoming Texas State Board of Ed elections (emphasis mine):

Republican Barney Maddox, a urologist and ardent supporter of creationism. … Maddox, who declines media interview requests, has posted his writings on the web at sites like the Institute for Creation Research and has called Charles Darwin’s work “pre-Civil War fairy tales.”

Now there’s some irony as heavy as a falling Acme anvil.

Sorry — I didn’t realise the clipping was an animation — hit your ESCAPE key to freeze the action.

(Picture description: this is a pop culture reference to Roadrunner cartoons. Wile E. Coyote was always trying to do in the Roadrunner, including dropping an Acme brand anvil on him. In this cartoon clipping, there’s a pile of birdseed in the middle of a road, with a sign stuck into it saying “Free”. The road runs underneath a natural stone arch somewhere in the US desert Southwest, and hanging below the apex of the arch is a heavy iron anvil. Presumably the unseen Coyote has a hold of the rope tied to the anvil, and is waiting for the likewise unseen Roadrunner to come running by. Of course, Coyote never succeeds, as Roadrunner is way to smart for him. Beep-beep! )

~//~

Just to complete this triad of pains for the day, I realised that I was wearing a new turtleneck for the first time. Normally when I get new clothing I remove the sewn-in brand name, size and laundering tags. Clothes-tag irritation is not as much a strict dermal irritation (there’s no rash), but rather is a constant hypersensitivity, a small but chronic sensory pain.

So before I washed this turtleneck I used my seam-ripper to carefully pick out the threads holding the labels at the collar seam. But by this mid-morning I realised that I had missed a tag, a big long one with laundry instructions that was unexpectedly sewn to the seam just below my ribs. Unfortunately, I didn’t have the spare time to sit around partially-disrobed in a toilet stall and employ my Swiss Army Knife scissors to the task of snipping a line of tiny stitches.

You would think that after a little while my brain would habituate to the sensory input and I would forget all about the silly tag. Well, it does, for a few minutes. But then I twist to do something, and I notice the annoyance all over again. Repeatedly, all day long. ARRGH!

~//~

Well, it’s time for me to wrap up my day soon. The icepick headache hasn’t shown up for a while. My wrist is less tender. It was wonderful to yank off the turtleneck and put on my soft, old honeybee pyjamas.

I aced my test this evening. And the last fix-it job I did on the dishwasher seems to have worked — we have machine-cleaned dishes, and I didn’t have to pay someone to come out and fix it, nor “hold vigil” for a repair person who would supposedly arrive “between the hours of eight and four”.

Oh joy, there’s the tinnitus popped back on again. And I’m getting another canker sore in my mouth. Well, can’t win ’em all.

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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 »

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