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]

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.