Someone left the Internetz

in my car!

“It’s a system of tubes.”

a system of tubes

a large boxful of cardboard tubes in the back seat

(My son salvaged them from his job because he thought his nephew & niece would enjoy playing with them.)

~#~

And while at work:

Brain’s a little off today; mis-read a woman’s tee shirt as, “Bitchy is my nipple name”. [middle name]

APD (Auditory Processing Disorder) moment: mis-heard a customer’s location query for raisins as “razors” (which, unfortunately, are at opposite ends of the store).

Another APD moment, listening to the radio on the way home: “And now, the Snooze.” [this news]

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Singing teh Brain-Dead Workin-Hard Blues: Remodeling

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.

Under pressure

(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.

Distress Data Diary

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.

Saved by bureaucracy

( A follow-up on my shaky employment status, as described in a previous post, The Catch.)

So now I’ve twice seen the ENT (Ear, Nose & Throat doc, not tree-folk), to figure out if the vertigo, worsening tinnitus and hearing difficulties are related to Ménière’s, or “just” migraines.  At those visits I also spent time in the audiologist’s booth:  “Huh?  Sorry, I can’t see what you’re saying.”  “Oh,” he replied jovially, “this isn’t a vision test, it’s a hearing test.”  Ha, ha.  Very funny.

(Have I mentioned that lately one of the cable channels is messed up, and maddenly, we’ve not had any closed-captions on episodes of CSI ?  Listening to TV is hard enough with fussy babies who want bouncing, much less auditory processing glitches and tinnitus.)

And then something wonderful happened:

The day after my first ENT visit, it occurred to me that it might be useful to ge an official letter from the doc to give to my various bosses.  So I called in my request to the office nurse and picked it up from the receptionist and passed out copies to my supervisors and those got fowarded to Human Resources people and —

SHAZAM!

I was saved by bureaucracy.

(I mean hey, it’s gotta happen sometime, right?)

Because apparently being treated for Ménière’s disease (note the careful legal waffling on diagnostics) falls under the umbrella of an American labor law known as the The Family and Medical Leave Act of 1993 (FMLA).  Basically, taking care of sick family members, birth, adoption, or one’s own illness (covered by the Act) is protected so the worker can get unpaid sick leave without worrying about job security.

I cannot be dunned for absences related to bouts of vertigo.

My principal was of course very polite and helpful in the process of explanating this unexpected coverage.  I was asked about accommodations that might be helpful.  Alas, none of the things suggested by the Job Accommodation Network are applicable to my job (but that’s a great site if you need ideas for accommodations for most any sort of affliction or difference).

However, I was giving some 60 days of sick leave for absences related to — and only to — Ménière’s.  Despite my initial relief, my job status still feels as wobbly as my gait some days.  Stay tuned for further developments.

The Catch

I’ve been having intermittent bouts of vertigo (some severe), along with worsening tinnitus and resulting difficulty understanding what people are saying. My GP said I got poor results on the tympanogram, and is sending me to an ENT, whom I see next week.  I’m no longer driving on the highway, and take extra care if I’m carrying my grandson.

Meanwhile, someone at school told the principal that I was “doing the wall thing”, meaning touching the wall to steady myself as I passed down a hallway.  This resulted in being called up for a Official Meeting.  By the time I left, I was feeling queasy and light-headed for entirely different reasons:

  • Being a couple hours late to phone in my absences due to migraine and due to a Emergency Room visit for vertigo, had previously earned me a stern warning for procedural lapses.
  • Going to or staying at work if feeling dizzy is prohibited because an educator with vertigo is a liability.
  • Leaving work 30 minutes early for a doctor’s appointment must be taken as sick time.
  • No “flex time” is allowed for appointments (i.e. leaving a bit early and making up that time by staying later another day).
  • Thirty minutes, half a day or a whole day all count equally as an incident of using a sick day.
  • Taking 19 sick-day events by October due to viruses, migraines, vertigo or doctor appointments is excessive, and any further such absences can result in termination of employment.
  • Which specific number is unmentioned, but up to the Powers That Be in the Human Resources department.
  • Any employee who is feverish with a virus must stay home.

Alas, this is all legal, and there seems to be a large limbo of being disabled by irregularly re-occuring conditions without actually being Disabled enough for some kind of accommodation.

Even if I somehow negotiated with H.R., the interpersonal climate with the school admin is too prickly to stay.  This is a shame, because I have a great relationship with my classroom staff/faculty.

I’m looking for a different job, hopefully something full-time that also pays well enough so I can have just ONE job in my life.  But everything I’ve seen pays fast-food wages, or else is so technically specific that my skills profile is a mis-match.

The free-floating anxiety is just HELL.

12 Days

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.

Hanging around the Web

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."

Periods

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.

Sleep Bends

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.

Requesting your thoughts, please

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 »

Comfort-able

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!

Backwards Symphonies

“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 »

A few updates

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.

Mental Menus

(WARNING: This is one of those posts that starts off tangentially. Sometimes that’s the way communication works.)

If you peruse the books in the travel sections of stores and libraries, you can find pocket-size volumes of useful phrases in different languages. While pantomiming works well for some situations*, there are times when having the actual word is best for all concerned. (For example, being able to ask a shopkeeper, “Tampons?”)

* I believe it was travel writer Rick Steves who noted that one does not always need a phrase book — merely pointing at your injured foot and screaming does get the point across just fine.

Sure, there are plenty of little words of politeness that are great to memorise, please, thank-you, excuse me, and the rest. But these little bits do not a conversation make. And anyway, phrase books are always of limited use; anyone who has tried such can explain the inherent problems that result by being about to make statements or ask questions, but not being able to understand the answers, or know what you are to do with the other person’s reply.

And that’s where we sometimes end up when wandering through the awkward territory of small talk. As I have blogged on before (“Small and Medium-size Talk”), the big sorts of talk, those that are the exchange of real information on subjects of mutual interest are generally rather easy — it’s the medium-size talk that is the social dance of chit-chat which is fraught with difficulties.

But there are days when the very-small talk of passing through and exchanging greetings seems to be a strain. Read the rest of this entry »

Horrid day for a migraine. Could have been worse.

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 »

Pain “All-Sorts”

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.

https://i0.wp.com/img186.imageshack.us/img186/4171/anvil1cq2.gif

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.

It’s Not Just Me

“It’s not just me.”

I always feel ambivalent saying that. It’s part, “I’m not nuts or just being whiney, it’s real,” and part “I wouldn’t wish it on anyone else.”

Recent stories on BBC News describe how fluorescent light bulbs are not just good for saving energy — they can also be problematic for some people. The lighting can worsen skin rashes in people with photosensitive conditions, including, “the auto-immune disease lupus, the genetic disorder Xeroderma Pigmentosum (XP), certain forms of eczema and dermatitis, photosensitivity, and porphyria”

It has been estimated about 100,000 people in the UK with these skin conditions will be affected.

ME (Myalgic encephalomyelitis, AKA Chronic Fatigue Syndrome) was also mentioned.

Dr Colin Holden, President of the British Association of Dermatologists, said: “It is important that patients with photosensitive skin eruptions are allowed to use lights that don’t exacerbate their condition.”

The bulbs were also mentioned as potential triggers for migraines or epilepsy.

However, Karen Manning, from the Migraine Action Association, said this could be damaging to some sufferers.
She said that up to six million people in the UK suffer from some sort of migraine attack.
“These bulbs do trigger migraines for some of our members – it’s either the flickering, or the low intensity of the light, causing eye strain.

Some people with AD/HD or autism also complain about similar problems with fluorescent lighting.

Currently there is a plan in the UK to voluntarily phase out incandescent bulbs by 2011, as part of the effort to reduce overall CO2 emissions.  This is important as part of the world-wide effort to reduce global warming; the US could stand to be more proactive.

But we need to remember the important tenant of Universal Design:  there is no one perfect solution for everyone.  Employers, schools and other organisations will need to be able to have options for people, as indicated by the ADA (Americans with Disabilities Act), DDA (Disability Discrimination Act) and similar rulings.  Hopefully advances in LED lighting or other new technologies will result in other products that work well for various purposes.

Weights and Balances

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

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

Smack me upside the head

Now I remember why I used to thump my head on the wall.  Or smack my skull with the base of my hand.  Because sometimes doing so would interrupt the sudden, sharp feeling like I’d been axed in the right parietal bone (above the ear).  I’m not talking self-injurous episodes of head-bashing, just carefully-applied sudden pressure. The good news is that after several repeats of these episodes, I realised that for all its unexpected intensity, the Blitzkrieg of headaches is also brief and naturally passes after a minute.  The bad news is that the “ice-pick headache” variety of migraine will repeat a number of times during the course of a day (one can understand why trepanning seemed like a reasonable treatment once-upon-a-time).  Hot bath didn’t work. Time to crawl in bed. Better unpack an Imitrex from its devilish over-packaging in case things don’t improve. This better Go Away — I have a wall to finish painting, and other things to do on my first day off school.  Blargh.

It’s a Real Pain

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

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

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

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

Favorite Things

The weather for the past few days has been absolutely dreich, with fog, snow, freezing drizzle, more fog and sleet. Three of us have had migraines this week, possibly related to such. There’s nothing worse than waking up to a migraine with the blinding blue snow-glare piercing one right through the eyes to the brain, or the sleet-magnified echo-chamber effect of having a Boeing jetliner come grinding down the street and then going by again and then OMG going by a third time (jeez, it’s the bloody snow plow scraping off the ice), and let’s not forget crickets that suddenly mature to start chirping (STFU!), and lamp timers that develop annoying rattles (my apologies to recent house guests).

Even worse, the weather’s bad enough to make driving dangerous, but not bad enough to cancel school — teh suckage!

Meanwhile, today I’m snugged down at home, and have just made up some lentil soup (a vegetarian Indian recipe) in the crockery-cooker, so recipe at end of post (apologies to folks down-under who are contemplating summer fare).

But there are the very good parts, including family in town for an early Christmas, and being also blessed with necessities like warm homes, full larders and effective medications. We also have a number of little things that not only delight us in small ways, but even make life just so much more pleasant, and reduce our stress loads. As usual, “you don’t appreciate something until you’ve lost it” so we often don’t realise just how much these mean to us, and how supportive they are, until we’re away from home. Here are some of my faves, which fall into two categories: technology that enables me to do things, and creature comforts.

  • The internet. It’s hard to imagine life without this font of information, fun and community. Howdy to you all out there!
  • My MacBook. Years ago I got my first personal computer with word processing, and haven’t looked back. I store my music on it, create PowerPoints to show pictures and illustrate methods in my gardening classes, keep track of my calendar, use it to download and modify and print pictures, play games, and of course, write and store all sorts of documents.
  • To take all those fun pix I have my digital SLR. No more 35 mm film to load and get developed or slides to scan! I can shoot over 600 photos before downloading, which means plenty of shots to get just the Right One, and I can play around with interesting angles.
  • My New Beetle beeps to let me know I’m low on fuel, and furthermore, will beep again the next time I start up the engine to remind me that now I really need to fill the gas/petrol tank. It also has heated seats which sounded like a ridiculous frill until the first winter, and then I realised that I could get myself warmed up by the end of the first kilometer of driving, rather than by the time I’d reached my destination.
  • My microwave that gives me a reminder beep a minute later, when I’ve forgotten something in there after the finish beep. This is fabulous for the AD/HD brain! Sometimes it takes that second reminder beep to penetrate past the hyperfocus to alert my consciousness.
  • And since I have that extra small microwave from when I had a second home in my campus apartment, I now keep it in my bedroom where it’s invaluable for also warming up my Rice Sock. The rice sock is simply a tube sock filled with 1 lb (1/2 kg) of dry rice, and knotted shut. I warm it up for a minute or two in the microwave, and then drape it where-ever I’m cold, stiff or sore. Unlike an electric heating pad, it eventually cools down, so there’s no risk of burns, and it conforms to my body much more nicely. It’s even nice in the summer, when I keep it in the freezer to cool down by draping it over my neck or forehead. Any time of year it’s great for draping across my eyes to shut out the light. Everyone needs a rice sock!
  • Shearling slippers for the chronically cold feet; thankfully these things “wear like iron” (last a long, long time) as I wear them around the house for all but the barefoot months of the year.
  • My mug warmer, a small electric hot plate that keeps my coffee or tea Just Right for however so long.
  • Old, soft 100% cotton pillowcases, ironed blissfully smooth (bonus if the bed linens were dried on a clothes line and smell like sunshine). Cotton also feels cooler in the summer time.

“A few of my favourite things” is the theme for the next Disability Blog Carnival, being held right here on the 13th. You can submit one of your blog posts by using this page, or posting a link in the comments section here (if you can, please send in links by Today-Monday or Tuesday). More links to Disability Blog Carnivals can be found where Penny L. Richards has posted them on this page of the Disability Studies, Temple U blog. They’re great reading!

Here’s that soup recipe, for some chow to go with all that reading:

MYSORE RASAM

2 tablespoons melted butter
3/4 teaspoon black mustard seeds
1 cup yellow lentils (toovar dal)
1 teaspoon turmeric
15 ounce/ 400 g. tin tomato sauce
1 tablespoon ground coriander
1 teaspoon ground cumin
1/4 teaspoon ground red chillies
1 teaspoon salt

Sauté the mustard seeds in the butter. Add to the lentils and spices, plus 4 cups water and simmer for 35 minutes, until the lentils are tender. (Or cook in crockery-cooker for several hours.) Mash or puree the lentils, and simmer 15 minutes more. Soup may be strained for a consommé.

A Week Too Long

It’s been a very, very l-o-n-g week. The kid was off school for two days with a migraine that required IV meds to break. I got rear-ended in a three-car pile-up while waiting at a red light (I’m okay, and so is the car, structurally). The kids at school have been super-squirrelly, as only 30 students (all of whom have major emotional & behavioural problems) can be, so the staff are stressed. It’s also been cold in the mornings, and not surprisingly, NO one wants to crawl out of bed and go anywhere.

But, we’ve still one more day of the work week (two for me, as I’m tutoring on Saturday). So for everyone out there struggling to get going in the morning, here’s a sympathy picture. This is one of our cats, Spot, (named after Data’s cat, from Star Trek Next Generation, of course):

TURN OUT THE LIGHT!

Mitigating measures

“Ms Andrea, please explain to the Court how being homosexual substantially limits one or more major life activities.”

“What?”

“Your case to the Court is a discrimination case, claiming the defendant made homophobic remarks. Please describe to the court how homosexual you are.”

“I … what, no. I never said I’m a lesbian, or bisexual, or even heterosexual. I’ve never made any kind of formal statement about my sexual orientation. This isn’t about whether or not I’m gay. This is about the slurs, threats, and homophobic remarks at school. It’s about sexual harassment.”

“Ms Andrea, do not waste the Court’s time. You cannot make a case for discrimination unless you can prove that you are a member of a group that has been discriminated against. Now please explain to the court how being homosexual substantially limits one or more major life activities.”

This is satire, of the dark sort. I have never really filed a court complaint. My actual time in a court process is limited to paying a minor speeding ticket (lesson learned: cruise control is a good thing).

I have been at that ugly social place (repeatedly so) where complaining about homophobic remarks simply sets one up for further sexual harassment, because everyone assumes that complaining about such means that you are gay, and that because you’re gay you “deserve” whatever abuse happens.

The point to this bit of theatre of the absurd is that a person need not be a particular sort of person to have been harassed or discriminated against. Read the rest of this entry »

Small Comforts

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

It’s a pain. No, it’s many pains.

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

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

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

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