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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Under pressure

5 February 2011 at 4:24 (Migraine, Pain, Science)

(We keep our dish soap on the counter, in a small pump bottle to meter out doses, and to use less counter space.)

So I go into the kitchen to catch up on some dishwashing, and find a small puddle of goo on the counter.  “Is the barometric pressure dropping?” I ask the family as I sponge it up, and proceed to do my washing-up.

“It’s supposed to snow on Sunday,” answers my son-in-law.

Well, that explains a lot. Firstly, the reason the soap has drooled onto the counter is because the barometric pressure outside the bottle is now lower than inside the bottle. (I filled and re-sealed it a couple days ago.) The fluid seeps out because fluids go from areas of high pressure to areas of low pressure.*

Out of typical insatiable curiosity (“More input!”), I then check out my local weather data site. This explains the second question. No wonder I have a headache; the barometric pressure has dropped about 15 millibars in the past day, from the general maxima down to the general minima.  Barometric pressure hoo-hahs are one of my headache/migraine triggers.

Sometimes I wish I lived on the space station, where the air pressure is kept constant.  (Besides, I could grow my veggies, herbs and flowers without all the dang pests.)

* AKA “Why do we have to learn this stuff?”  Well, now you know — no one squeezed dish soap onto the counter and left a mess; it happened because of natural forces.

3 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.

8 Comments

Naturally, I love chemicals!

1 February 2010 at 3:26 (Critical Thinking, Pain, Science)

This is a continuation on my previous post, “Attention, grocery shoppers!”

So the other night my daughter was complaining of her ingrown toenail that’s been bothering her for the past month.

“Why don’t you soak your foot in Epsom Salts?” I suggested.

“What’s that?” she asked.

“See that blue milk carton atop the fridge?” (That’s where we keep our first-aid/pharmacopeia.)  “It’s magnesium sulfate*.  Bath salts. It’ll help draw out the inflammation and such.”

“Salt?!” She winced

“Mineral salt, not sodium chloride table salt,” I added, while refraining from explaining about ionic bonds.  Her hubby the medic prepared her a foot soak and explained that magnesium sulfate is a natural mineral salt that’s mined and used for all sorts of things.

While she soothed her cold, sore feet in warm water, I had a mental chuckle over “natural chemical”.  To many people, the two words are antonyms — and very distant opposites at that.  As I’ve said before, a “chemical” is simply a substance with a defined composition.  Minerals are chemicals.  So are sugar, water, caffeine, theobromine (mn chocolate), baking soda (sodium bicarbonate), all the ingredients in your can of soda, and so on.

Natural means that something is found in nature, with or without some processing.  Apple juice and olive oil are natural because they squeeze the bejeezus out of those fruits.  (Botanically, fruits are the parts of the plants with the seeds inside; olives and tomatoes are vegetables insofar as cookery and taxation are concerned.)  Vanilla extract is a natural flavor because vanilla beans are used.  Other natural flavors use plant and animal products.

Artificial, which is what many people really mean by the word “chemical”, means a substance produced synthetically.  In my organic chemistry lab, we made (minute) quantities of isopentyl acetate, which most of us are familiar with as artificial banana flavor used in candies or instant puddings. Imitation banana flavor is obviously pretty fake!  But imitation wintergreen is not so readily identifiable, nor is it dissimilar from naturally-distilled wintergreen essence, aside from the fact that the natural distillation will have additional “impurities” that add more depth to the flavor.

The divisions between natural and artificial are fairly straight-forward.  But the definitions of “organic” aren’t!  That’s because we have different meanings for the word organic in different contexts.

Once Upon A Time, O Best Beloved, there was just chemistry, that field of natural philosophy that the scientific method dragged out of the abyss of alchemy.  Organic materials were those which came from natural sources, and were deemed special and beyond the production of the laboratory; they were somehow still deemed to have a “vital force”.  However, in the early 19th century, urea (yes, the stuff of urine) was artificially synthesized, thus dispelling that last thread of medievalism.

Nowadays, organic chemistry occupies itself with materials composed of hydrocarbons, that is, molecules with both Carbon and Hydrogen atoms.  So instead of natural materials, there are a lot of well, unnatural materials involved, such as plastics, drugs, fertilizers, house paints … ordinary everyday stuff, most of which we wouldn’t want to live without.

In addition to the chemistry definition of organic, we have a couple of other usages.  When I’m teaching about composting, we use the term organic in its original sense of “from something living”.  If it used to be alive, you can compost it and create lovely humus (although fatty things will smell, so we leave meats & dairy items out).

Organic gardening and farming is yet another story.  Synthetic fertilizers and pesticides cannot be used, and transgenic plants are most always frowned upon as well.  (I have mixed feelings about transgenics; not about the processes, which are simply more specific means of breeding, but about other economic and agro-ecological issues.)

Unfortunately, the history of organic growing is fraught with heavy doses of woo, including planting by moon-signs, astrology, companion planting, and whatnot.  Fortunately, the professional realm has abandoned these, because professional growers have a lot of energy, money, time and effort invested (and of course, documentation work, because nothing officially exists without documentation).  They can’t afford to waste time on nonsense.  Unfortunately for the gardening end, lots of this woo still propagates through the vacuum of teh interwebs.

Last on my list of definitions is the oft-misapplied sense that anything “natural” or “organic” must therefore be safe.  This is bullshit.  There are lots of natural poisons!

Conversely, artificial does not automatically mean dangerous. For example we’ve been using synthetic acetylsalicylic acid (commonly known as aspirin) for decades, instead of the salicylic acid derived from willow bark that was painful to swallow and digest.  The name salicylic acid comes from the genus Salix, in reference to the willow. (Interestingly, wintergreen flavoring can be made from … aspirin!)

There are many organic materials that can be derived both naturally or artificially, and the molecules have no magical memory about where they came from previously.  A nitrate is a nitrate is a plant fertilizer, and a pan’s a pan for all that.

Now if you’ll excuse me, I’m off to nom on some banana Laffy Taffy.

* Technically magnesium sulfate heptahydrate, for chemists and those who actually care — you know who you are.

4 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

Betcha I wasn’t the only one absent

21 August 2009 at 4:21 (Pain, Random Thoughts)

I was going to attend the free seminar on chronic pain,

but my backache was too severe that night.

2 Comments

12 Days

2 August 2009 at 4:31 (Migraine, OMG, Pain, Sleep, Work / Employment)

Man, but July just oozed by in a protracted mental fog.  One of the huge blocks to regular bloggery was the incredible 12-Day Headache.  It got slightly better at times, and it got worse at times, but the “Ten Kilos of Lead Atop Me Head” pain just would NOT go away!

It made working the three jobs worse, despite my adamant determination to not miss more than a day’s work from the para or grocery jobs.  I couldn’t even consider missing a day from the professor job, because summer semester runs at twice the speed, and we had no wiggle-room in our schedule for covering everything that needed to be covered.

As before, putting thoughts together was like stringing beads while wearing heavy ski mittens.  But this time I didn’t have a handy excuse, other than, “I’ve had a headache for over a week now,”  Being in pain means not sleeping well, and increases stress, and all three of these factors combine into a viscous circle.

  • I tried acetominophen (paracetamol), in addition to my daily naproxen sodium that I take for arthralgia.
  • I tried soaking in a hot bath in a dim room.
  • I stood under a strong shower and let it beat upon my head.
  • I laid down with cold compresses.
  • I took two-hour afternoon naps because I could not keep my eyes open.
  • I took a vigourous 1-mile walk and gardened, and avoided afternoon naps in hopes of getting better sleep.
  • I had a hot toddy at bedtime.
  • I ate cold ice cream to the point of “brain-freeze”.
  • I massaged my head.
  • I vigorously brushed my hair.
  • I took Imitrex, my migraine medication.
  • I did Tai Chi Chih-like stretches.
  • I layed with my feet higher than my head.
  • I massaged my feet.

I thought to myself, “This can’t keep going on!  I can’t live like this.”  But of course it can, and people do.

Initially, I kept saying, “I’ll do that tomorrow when I feel better.”  But the mañana list kept getting longer and longer.  After a week, I finally came to the grips that for whatever reason, I was going to have to deal with The Damn Leaden Burden of Pain as a chronic issue, whether long-term or short-term. It forced me to pare down my Daily To Do lists to the merest essentials:

  1. This morning I will shower and shampoo.
  2. After a nap, I must write at last 75% of an exam.
  3. I will eat something nutritious for dinner before working tonight.
  4. I will set out a complete change of clothes before I go to bed.

What hellish demands upon my time and energy!  That was of course, a day when I wasn’t teaching a class, just doing the morning para job and a few hours of stocking groceries after tea.

Oh crap, I forgot one:

5.  I will refill my daily pill minder.

You know you’re exhausted when dosing out a few bedtime pills is too much of a bother.

Finally I gave up and went to my GP.  “I’m exhausted.  I’m even falling asleep at work, and at dinner, even though I’m sleeping seven to ten hours a night, with two hours naps during the day.  My joints and muscles ache.  I keep getting bruises, and cuts heal slowly, and my gums bleed when I brush my teeth.  My hands and feet are cold.  I’m sensitive to light, my ears ring most of the time, and I’m having dizzy spots.  I get disoriented, and have the worst mental fogginess, despite taking my ADHD meds. I have dry mouth, and am thirsty all the time and drinking two or more liters of water a day.  AND I’VE HAD THIS HORRIBLE HEADACHE FOR TWELVE DAYS.”

I mentioned a family history of diabetes.  The doc sent me down to the lab for blood draws, also checking my thyroid and some other factors.  Additionally, he gave me a heavy-duty pain reliever that I took when I went to bed.  The next day was much better, although I could still feel headache lurking around the edges, so I took another pill the next night.

The Damn Leaden Burden of Pain finally went away.  My blood tests all came back normal, thankfully.  I don’t know what caused such an intractible headache, but I sure hope it doesn’t return.  Or if it does, I’ll smack it down a lot quicker with the pain med.  The pain-exhausted-stress cycle gets so hard to break.

3 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!)

Cruising the Web BW

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:

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

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.

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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

The long and short of it

11 June 2009 at 15:40 (Auditory Processing Disorder, Autism/Asperger's, Hyperacussis, OMG, Pain, Sleep, Teaching/Tutoring, Tinnitus, Tourette's / tics)

It’s going to be a long day; I can tell already.

Last night I finally got eight hours of sleep, aside from several prolonged coughing fits.  The previous three nights I’d only gotten four hours of sleep.  You’d think the extra rest would make me feel better, but I’m still running short on good sleep because I have this bronchitis or whatever (we’re waiting on the lab results from the nasal swab to see if I have Pertussis, holy shit).

At least I only have to work one job today.  But I’m teaching an evening class and I suspect that by then some of my cognitive functions will be running on Reserve Power.  At least it’s a subject I’ve done several times before, so I can get by with using a lot of verbal scripts.

It’s going to be a long day; I can tell already.  That’s because I’m already running into “System Overload: Error Messages”.

P.S.  I’m going to have a bowl of Mint-Chip ice cream and see if that doesn’t do anything for me, since the efficacy of Häagen Dazs Vanilla Swiss Almond ice cream isn’t up to par. Thanks, Bev!

[now clink on this link for System Overload: Error Messages where post continues]

1 Comment

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

That joist isn’t funny

19 April 2009 at 18:49 (Humor/ Fun Stuff, Hyperacussis, Pain)

squeeee-squeeey-squeeeeee

The bathroom to the master bedroom is above the kitchen, and when someone is (dressing? brushing their teeth? pacing?) at a particular spot, the floor squeaks abominably, like two pieces of Styrofoam [polystyrene] being scraped together.  (Were this a ground level floor, we could go to the basement to hammer in some splints in the joists.  But of course there’s a ceiling in the way, so we’re stuck and I just have to cope.)

squeeee-squeeey-skwor-skwork-squeeey

There are some noises that make me flinch, jump out of my seat, and/or send me packing from the room.  Not just the typical squeaky things, like the proverbial (and literal) fingernails-on-the-blackboard, but also fire alarms, theatre movies, teakettle whistles, the shattering of dropped water glasses, chainsaws and leaf-blowers and string-trimmers and hedge clippers and table saws and wood chippers and …  Okay, lots of people dislike those noises, but during the quarterly fire drills only another staff member and I are plugging our ears in distress as we herd the students outside.

Then there are the more mundane noises that no one expects anyone to mind: the sour whine of computer hard drives going bad, the strident jangling of class bells echoing down tiled hallways, the cavernous reverberation and intense whirring of elevators,  “merely” stacking pots and pans and shutting the stove drawer where they’re kept, the clanking when stacking ceramic casseroles in the cabinet, or the grating squeal of the pressure-hinge when opening and shutting an aluminum storm door.  (WD-40 is my friend, and periodically I go around the house and spray every room and cabinet door hinge before I “come unhinged”.)

Even my apartment neighbors thought me overly “picky” because I asked them if they could be quieter when washing dishes or taking a shower or walking about in boots or high heels.  Even everyday noises like vacuuming or their sputtering coffeemaker and beeping microwaves or their tinny radio and yakkity telly programs would drive me ’round the twist.

Sometimes it’s neither the suddenness nor the loudness nor the high pitch of the noise, but the combined effects of all the daily noises, the “life in surround-sound” as described in “Bridge Load Limit”.  As I’ve described before, hyperacussis is a “super-power” that truly, truly sucks, even when you don’t have a profoundly debilitating case.

I’m with Karl !

LOLcat Karl makes an anguished face as another cat asks, "They say itz a sound only we can hear. IDK. I don't hear anything Karl. Do u?"

1 Comment

And then she said,

5 April 2009 at 4:27 (Doctors, OMG, Pain, Sleep, Work / Employment)

“This one is my ‘Insurance Job’.”

She is one of my coworkers, this on job #3.  Yes, I have three jobs, one almost full time, one seasonal evenings & weekends, and the other seasonal and weekends.  Hence the general lack of regular bloggery due to 10- and 12-hour work days, 6-7 days per week.  I am one of the many over-worked and underemployed, or perhaps that’s underpaid, but certainly unable to make a living from one job, in any regards.  I can’t really complain all that much, given how many people lack sufficient, if any, employment at all, and how many other people are in the same overworked shoes.

That was the first time I’d heard the pair of words as a specific phrase, but I knew what she meant instantly.

For those of us with multiple jobs, we have a specific job that we must at all costs keep, for it provides us with the terribly necessary medical insurance.  Without such we could not afford to see our doctors for even mundane issues, nor afford many medications, nor, [insert your favorite misfortune-averting phrase] be able to pay for emergency or hospital care.

Without medical insurance (and horribly, sometiems even with medical insurance!) anyone in the US is a mere emergency-room visit away from bankruptcy.

I would love to write a long post citing all sorts of statistics about the numbers of uninsured, under-insured, the perils of trying to go without and self-medicating or second-guessing, and all sorts of issues.

But I can’t.  I got about four hours of sleep last night. (I’ve not slept well because I’m out of analgesics; I’ve not been able to get to the pharmacy when they’re open because I’ve been AT WORK and AT OTHER WORK, and it’s not like I can just send a family member down to pick up a bottle of tablets, because even with insurance my assorted monthly meds cost $90 and that’s not pocket-change.)  Then I taught classes for some 6 hours, and then cashiered for 4 hours, and oy my feet hurt.  But I gotta get to sleep, because tomorrow morning is my only free time this week before I go to work again at noon.

Polysyllabic expletive!

But hey, even though I’m overworked, I have an “Insurance Job”.  Thank goodness.

9 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

You just don’t get it

13 January 2009 at 4:12 (Attribution Errors, Autism/Asperger's, Communication, DSM, OMG, Pain)

A few summers ago, right in the middle of my graduate programme, I was hit with Mono and Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.

Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. (And this was even in a biological science, where you’d think they would have some kind of clue!)

I got over the diseases. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, “All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.” Another is: “Acceptance is not the same thing as resignation.”

I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths. Of course, it was hardly the first (or last) time I had experienced such in life, just an event when things were painted with such broad strokes.

Weird thing is, the official word is that autistics lack empathy.  That’s the line, but there are plenty of people who beg to differ.

In an NPR interview, Temple Grandin had this to say about empathy:

Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation. I’m frustrated with the inability of normal people to have sensory empathy. They can’t seem to acknowledge these different realities because they’re so far away from their own experiences.

Unlike someone with Antisocial Personality Disorder (sociopathy) or Narcissistic Personality Disorder who truly does lack much real empathy, the autistic person does not really lack empathy. Rather, they do not respond in ways that demonstrate empathy in typically recognisable fashion. This is in contrast to those sociopaths, bullies and narcissists that may demonstrate a lot of the shallow social-noise that appears to be sympathetic, but on the deeper level is really more about manipulation to gain something for themselves, rather than true empathy.

Just because someone doesn’t respond in the expected manner, that does not mean they lack the feelings we associate with those responses.

The term “empathy” is one of those words that carries several meanings, and is used in different ways. This conflation of meaning results in things like this issue of the Asperger’s/autistic person being described as “lacking empathy”. Plenty of parents, spouses, other family members and close friends will assert that despite diagnostic criteria, their person “really is loving” and “shows empathy” and demonstrates both passion and compassion.

So what’s going on here with this definition, and in the person?  Things like: Read the rest of this entry »

9 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

“Mama said,

28 August 2008 at 3:26 (ADD/ADHD, Auditory Processing Disorder, OMG, Pain, Prosopagnosia, Sleep, Teaching/Tutoring, Tinnitus)

‘There’ll be days like this,’

‘There’ll be days like this,’ Mama said.”

The Shirelles, “Mama Said”

Coming down with some virus most likely, as the school nurse says it doesn’t look like strep throat (despite the sore throat that’s making it hard to lecture).  I can deal with that.

Headache, only ’bout a 4 out of 10, not so bad of itself. I can deal with that.

Ditto the tinnitus, which alas, seems to be making it more difficult to understand people, especially those students more than a few feet away from me, which is most of the time — why do the most soft-spoken students sit in the back corner?  The auditory processing glitches don’t help, either; I’m sure some of the students think I’m not paying attention, or am losing my hearing.  At least no one is going around yelling to me in the mistaken impression that volume = clarity.

Five hours sleep.  Definitely need to get to sleep sooner, and I would were it not for the class prep I have to do before and after classes.  Okay, now it’s getting really challenging.  I’m dropping words in the middle of my sentences once or twice an hour, and does that ever make me feel stupid.

I’m hungry because I didn’t eat much due to the sore throat & canker sore.

Two of the pieces of paper I really needed to have with me were not in my binder.  No, I’m sorry, I don’t remember the date of the next exam right off the top of my head.  No, I’m sorry, I haven’t memorized the ID labels to all of the slides (but I can tell you what’s important about the slide).

We were reviewing the results of the first exam.  This is the first college-level science class that many of the students have had, and some of them haven’t had a science class in years.  Bumpy ride.  It’s also the first full exam I have written, and every teacher knows the hidden hazards of writing such.

For some reason I decided to hand the graded exams out, rather than just letting the students pick their own test up.  I’m faceblind, and have not yet memorized the seating chart.  Definite planning error on my part.

My PowerPoint — that delightful gizmo that helps keep the tired, the distracted, the forgetful, the sick, and the first-time teacher from losing track of the game plan — the PowerPoint file on my flashdrive proved to be an older version that did not have the other half of the slides I needed to remind me what I was going to tell the class this evening. That too, of itself I could deal with, although the presentation was not at smooth as I would have liked, and we had to go back a few times and fill in something I had not mentioned earlier.

But all of these things together, oy vey!  I muddled through everything, but did not feel very brilliant or smooth.  I didn’t even have all of the lab equipment fully prepped because I had rushed in right before class.

And then shortly after class started, one of the professors came in to do a surprise Observation of me as a new instructor.

At least I didn’t have my trouser zip left undone, or have a strip of toilet paper (loo roll) stuck to my boot!

Mama said there’ll be days like this …

6 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:

“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 »

2 Comments

A few updates

1 August 2008 at 2:28 (ADD/ADHD, Auditory Processing Disorder, Disability Blog Carnival, Family, Migraine, Pain, Skeptic's Circle, Teaching/Tutoring, Tinnitus)

The 92nd Edition of the Skeptic’s Circle is up, and The Lay Scientist gives us the latest press conference news as given by the Team Skeptic Manager Martin, from the state-of-the-art Olympic training facility in Beijing!  Prepare to be amazed — but never bamboozled.

The July issue of the Pain-blog Carnival is now up at How to Cope With Pain blog.  Readers share a variety of subjective experiences and treatment information.

Speaking of things painful, I put up a couple of photographs I modified to demonstrate some of the visual disturbances I experience during migraines.  Due to the trigger potential, I put these on a special page.  (The images are described for those with impaired vision.)  Alas, the Kid was laid flat by a migraine today — the preventative meds certainly help reduce the numbers of attacks, but they don’t completely eliminate them.  However, he reports that the new medication is a definite improvement over the old one, wooziness notwithstanding. A quiet “Hooray” for this encouraging news.

And although the timing isn’t quite “news” anymore, it’s not so late for it to be “olds”, so do check out the 42nd Disability Blog Carnival over at Pitt Rehab, where Greg gives us a break from the usual busyness for some summery relaxation at the beach, and plenty of great links.

As for me, I have to blame day-long teacher training class all week for my dearth of posting.  It’s been really good, but so intense — having to sit and focus on attending, listening, and learning for hours on end is hard.  Every day I run an errand right after class, and then come home to crash for a 20-minute catnap for my brain to do some filing before I can even think about cooking dinner.  The fatigue is a good reminder of what it’s like for all our students!

(Now if only the tinnitus would Shut Up.)

P.S.  Time to play ADD hide-and-seek: if you were a $100 calculator left in some random location by a teenager, where would you be?

P.P.S.  We already checked the breadbox.

3 Comments

Horrid day for a migraine. Could have been worse.

7 June 2008 at 22:41 (Accessibility, Migraine, OMG, Pain, Sleep)

Yesterday: it is very sunny, so bright the out of doors looks like over-exposed photos, all contrasty lights and darks and washed-out colors; even the trees were flickering masses of surface brilliancy against their internal heavy gloom. The previous night’s storms guaranteed humidity and muddy passage, and the tailwinds still rattle across the landscape, scratching the yet-unpruned peach tree branches against the outer wall of my bedroom. A few houses away, there is the repeated doppler roar of someone taking advantage of the clear skies to catch up on overdue mowing.

Cradled between layers of pillows, with the sheet and cotton quilt and heavy wool blanket pulled up to my ears, I lay stiffly. Mostly still asleep and not even close to the stage of stretching groggily or opening my eyes, my conscious awareness surfaces uncertainly through layers of internal sensory checks, transversing clouds of anxious, nonsensical dreams with endlessly repeating plot-less terrors.

For some reason I could not yet fathom, the usual morning physiological data-gathering was running very slowly, as though entire sections of my brain either could not communicate or were withholding information. At times like this, I am highly uneven, having some high cognitive functions but lacking other more basic ones. Pieces of random information drift by, sometimes contained in the phonemes of words that repeat like the short loop of an advertising jingle, but slide away without having been decoded for any meaning. I become briefly aware of just one or two sensory indicators of the outside world: water running through the sink downstairs, or the crackling of a cat’s jaw as it yawns so wide the ears fold backwards.

The mental sticky-notes I told myself at bedtime flutter by intermittently, “I need to get up early to take the bags of brush down to the curb before the truck comes by,” and “I still need to do a prelab and upload it before 11:59 pm,” and “I need to finish that cover letter for the job app,” and “The cable repair person may be here at 8:00 am,” and “I need to drive my daughter back to her college town.” Things to do, people to be, and most of all, irrevocable externally-imposed deadlines to meet. The bad part is, were this a Saturday, this could be much worse.

Slowly the information collects, like tiles of satellite photos that must reach critical mass for the terrain to be understood. One points out that I did yard work yesterday, several short jaunts out to pull weeds from the vegetable patch and to bag the pile of brush. This means I will be achier today, and the stiffness will require me to move about more carefully for a few hours. I should not plan on doing any heavy work today.

But I don’t yet stretch to test my joints, as the recalcitrant parts of my brain yield the messages previously withheld: my head hurts, a pain so large it has expanded beyond my brain case to my eyes, my ears, my nose, my jaw … Read the rest of this entry »

4 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

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