I've been lucky, pain-wise. The worst pains I've experienced have not been chronic; the pains that could reasonably be called chronic are not really that bad. And yet, reading what Elizabeth has written about variations in pain scales from person to person resonates with me. When I'm asked to rate pain, what do I rate it relative to? The worst I've ever felt, in which case I'll (hopefully) never again describe anything as being above a 5 or 6? Or on a continuum where 1 is nothing and 10 is "about as bad as I've felt recently"? And since my experiences with pain - both first and second hand - have probably been more extreme than most people, do I need to worry that if I rate something as X, when another might rate it as X+2 or X+3, I won't get adequate short or long-term treatment?

The Wong-Baker pain scale is a popular one, and defines each number in terms like "hurts a little bit", "a little bit more", "even more", up to "hurts worst". And they call this objective? Bull. Other scales define their points in terms of functioning - here, you're a bit distracted. There, you can't focus at all. Over there, you're writhing in pain, unable to even communicate coherently. This, too, is problematic; people's tolerances for pain are incredibly variable, in part based on their past experiences with pain, in part based on the kind of pain (for me, at least, a given amount of inner-ear pain is far more debilitating than the same amount of hip pain), and in part based on the phase of the bloody moon. While in some sick way, it makes sense to treat pain with a goal of allowing people to be functional, that just doesn't cut it. Someone with a high tolerance for pain may be - or seem to be - perfectly functional while they're in a great deal of pain. That pain may still need to be treated!

It's perfectly understandable that the medical community wants a way to record pain, to classify and track it. Unfortunately, pain is not a symptom that lends itself to objective verification, and attempts to approximate that need to be sensitive to the wide range of needs and experiences a patient may be coming in with. Anything else, however well-intentioned, runs the risk of alienating the populations that are most at risk - and failing to adequately treat their pain.

I make a point of replacing my hearing aid battery just before I travel; it's a pain to be at the airport or in a car and realize all of a sudden that you can't hear well anymore. It's one of the nice things, oddly enough, about the 12-hour lifetime of a CI battery - much easier to remember to change the battery regularly when it's something you have to do every morning. Anyway - you'd think that this habit of changing batteries before I travel would be a good reminder to put a spare package in my backpack. Unfortunately, it's not.

All of this ran through my head yesterday when my hearing aid went beep-beep-dead. It wasn't a disaster; I wasn't in a particularly social or noisy setting, and I was able to get to the store and buy batteries before I was in such a setting. But it did mean that I spent a few hours using just my implant, and I realized something: it sounded almost normal.

I know what you're thinking: how could you not notice that? How does that come as a surprise? But it was! Just a few weeks after my implant was activated, it faded into the background. It was a big help, certainly, and it was very obvious that I was wearing it when I became overloaded or wore it too long; but as long as I wore a hearing aid on the other (I'm sorry, contralateral) side, I really didn't notice the unnaturalness of it all that much. And yesterday, the CI by itself ... sounded fantastic. Like I was speaking to a human being, and not through a radio or inside a metal box. Very exciting! This is indeed the holy grail, to the point that I can definitely see going bilateral someday when my left ear joins my right ear in the big audiobooth in the sky. (Or possibly sooner, but the time and effort involved just isn't worth it right now, and probably - hopefully - won't be anytime soon.)

I do have one tweak I'd like to make. Things don't feel loud enough, although I can't turn the volume up without feeling the pain that comes from too much current. It also feels a bit flat (texture, not pitch) - though flat isn't the quite the word to use. I'm not really sure how to verbalize it, but I suspect it's a quality that most people with hearing aids will recognize. I suspect, based on 16 years of experience with my own aids, that I don't actually need more volume overall, just a bit of a boost in the low frequencies. This is one of those occasions it'd be convenient to be able to program my own equipment; it's not a big enough change or improvement that I'm willing to make an appointment (and deal with transportation, the wait, the co-pay, etc) with my audiologist. And I'm not totally sure that's it, so it'd be nice to try bumping the lows for a few days, then adjust other things if that doesn't turn out to be the case. But it's not a big problem, so I'm content to wait until my next scheduled reprogramming in a few months.

Edit: In the interests of honesty, I should point out that later that night, while I was feeling all excited about this, and had both my hearing aid and my CI on, I misheard "real GDP" as "real shitty pizza".

3 Things Hard of Hearing People Like. Oh, so true! And one more: new earmolds. Mmm.

The BBC is reporting that some folks are planning to build a "pyramid cemetery" in Germany - people's bodies will be cremated, and the ashes will be used in the blocks that make up the pyramid. That's actually kind of a nifty idea, although it would be more low-impact if you used them for construction. (Which I think would be cool, but I suppose maybe not everyone thinks that way. You'd probably have a hard time finding a market for the bricks.)

All that said, though, the BBC article contains a particularly unfortunate quote: "It will grow for thousands of years. I would like to be one of the first people to be buried there." Uh ... sure, buddy. You go right ahead there.

[LJ]Current mood: stressed[/LJ]

In the last few years, I've had some pretty significant breakdowns with my scooter. American Airlines ripped the tire in half; my batteries reached end-of-life significantly before they were supposed to; the charger stopped working. Each of these incidents involved missing class, using a rental chair that didn't fit well (and in one case, caused shoulder pain that lasted for several months afterwards), and paying a shitload of money to have a certified guy come out and fix the damn thing.

Fast forward to this fall. Around November-ish, my scooter stopped holding a charge. This wasn't a huge surprise; a battery can only go through so many charge cycles before that happened. In retrospect, it would be wise to replace the batteries every year, before trouble happens, but it wasn't a big deal. I ordered the batteries and installed them at home. Expensive, and not covered by insurance, but it was a simple problem with a simple solution.

Unfortunately, about two weeks ago, the scooter started stalling out. It seems to happen more often (though not exclusively) when I'm on rough terrain; given the lousy state of the sidewalks in Boston, that's a pretty big problem! When the repair guy came out, he said it looked like the connections on the battery had shaken loose - like I hadn't tightened the nuts enough when I replaced the old battery. He tightened them up, and all was well.

Until last Thursday (or Wednesday?), when the problem happened again, making me a very unhappy camper. I switched over to the backup scooter I decided to buy when the afore-mentioned issues happened in the fall, and then, last night ... the right rear wheel broke off the axle. Rolling over a damn roll of toilet paper. And not 'broke off' as in 'screw it back on', either. 'Broke off' as in, 'the plastic bits that hold the wheel on the axle cracked in half'. So now I have two broken scooters, one that needs a (probably expensive) spare part that my repair guy may or may not have in stock, and one that is not yet diagnosed. And no functional scooter. (Note: I can drive around the first scooter I mentioned, but it stalls out unpredictably, and will refuse to start up for about an hour - so I can't drive outside, which means I have to take it to campus, leave it there, and find some other form of transportation between campus and home.)

I'm incredibly frustrated at this point. When do I stop throwing money into this black hole and just buy a replacement? Why don't wheelchair manufacturers understand that their users drive outside? Why don't they over-engineer their vehicles, like cars manufacturers have to? Why do they only last 4-5 years? Why is there only one person in my area who is a certified Amigo repair person? Why is it so damn expensive to have him do repairs? Where will I find the time to deal with this, and academics, and getting over a virus, and everything else I need to do? Fuck.