at Feministe, beginning today, for the next two weeks.

Head on over and check it out!

Does anyone have any experience or knowledge about TENS units? Particularly the portable sorts?

My physical therapist is recommending one, and it does seem to be doing some good, but I’d rather prefer to be informed before jumping feet-first into the fight for my insurance to buy one for me.

an AMEN?

One of, anyway:

Being unable to find the memory card you quite clearly remember seeing this morning, despite having turned over every inch of every area in which it might be. Compounded by the fact that the entire apartment is clean as of last night, for once, so there’s no clutter to go through — everything is neat and in its place. Except that card.

I am trying my damn hardest not to cry right now. I don’t remember having been this frustrated in well over a year. It’s not just the frustration of not being able to find something. I had pictures on that card and while they aren’t Important pictures, I would still rather prefer to have them than to have lost them. (And now, that thought last night of, “Oh, I’ll load them later” feels oh so much more hurtful.)

Mmf.

ETA: Found it. Under the damn laptop. Simultaneously happy and damn Amanda you are such a fucking nitwit.

Addendum: This chair did break on me over the summer — its weight capacity is fairly low. See here for further product recommendation.

***

This is a total gimme. It’s one of the most helpful aids I have, and it’s also one of the most explicit medical devices, so to speak. I’ll get into the subtler stuff as time goes on.

So: my shower chair.

I have touched on the subject of showering in the past, in passing and in detail. Suffice to say it is extremely taxing for me. I usually aim for a shower every 2-3 days, which means I usually end up showering every 3-5 days when I’m in decent health. I try to time it so I shower once on the weekend, when my husband is available if I am having trouble. Usually I will also shower once mid-week just so that I don’t get uncomfortably stinky, greasy, etc.

I don’t always sit during my shower. And I almost never sit the whole time; if I need to sit the whole time, I probably shouldn’t be showering. But it is a huge help, especially when I am washing my body. That requires turning, reaching, bending, twisting, lifting, and balancing, all while pushing a soapy little puff around my body. It’s easier to reach my feet and not fall down when I’m sitting on a stool vs. leaning over standing on one leg. Shaving, too, is something I usually do sitting down, as the bending and twisting is too awkward and stressful for my lower back.

I also scrub certain parts of my feet and hand with a pumice stone to get rid of dead skin cells, because those spots (heel, bottom of my big toe, and around the cuticles on both fingers and toes) get very dry otherwise. This results in two things: feeding my bad habit of picking at my cuticles, and painful callouses on the feet. That’s too much force being exerted to also use up my energy standing up. This is actually the part of my shower that takes the longest, but it’s also best to do it during my shower, when my skin is softened from the warmth and moisture.

OTOH, I usually stand while I wash and condition my hair. Not enough water pressure to rinse it out when I’m sitting, and the less time I’m applying force with my arms lifted high, the better.

I actually don’t know what it is that makes a shower such an event for me. I can pick out some aspects: the heat (though I can’t tolerate extreme heat anymore), the humidity, the enclosed space? I find it hard to breathe in that setting; is my asthma the reason? I do know that actually doing anything while I’m standing is difficult for me, which is why I tend to avoid washing our dishes (unfortunately for mattw) and almost entirely why I didn’t last long at the cafe job. But it feels like that’s not all of it. I get so shaky after a shower, and weak, and shaky. And shaky. And I don’t do great after washing the dishes, but it’s usually not anything like that.

But you know, I don’t always get shaky and week after my showers anymore. And before I bought this chair, I did.

The reason I don’t just sit on the edge of the tub is: ew. OK, the real reason is that it’s still a serious balancing act. (And if it’s anywhere other than home: it might let a lot of water out, and also, ew.)

I got my chair from Target; it was the cheapest one I could find that looked safe and like it would fit our tub.  There are any number of sites that sell these things, and a quick hop on the Google bus should get you where you’re going. This one isn’t particularly portable — it folds down, yes, but it’s not like I was going to carry it on the Metro so I could have it at my hotel in DC. But it allows it to be stowed neatly in the bedroom closet, which means mattw doesn’t have to deal with it when he’s showering on his own, either.

I seriously took a good week to write this post. I feel pathetic. I’m going back to filing now.

Oh. P.S.: Sign up at Target’s website for their weekly ads before you order from them, and if they allow you to just sign in with your Amazon account, do it. I don’t know which of those two things is what did it, but when I ordered, I got a 10% discount.

Sometimes I read things — the whole of which I may not endorse, but which I still feel merit more attention — to which I have nothing to add. So…

shah8 on historical trends:

One of the things that I have noticed about big F feminism, and this may not be an accurate perception, so feel free to correct me, is that there is a much lower appreciation among women that enlightenment and oppression happens in cycles. Ever greater progression in civil rights is not typically the rule, especially beyond a generation or so.

On a whim, one year ago today, I entered this heady world of blogging. I was in want of an intellectual dumping grounds, figuring that even if no one was listening to me, I’d have my place to externalize and work through my cognitive mess — sparing those around me from my ever-running critical commentary — to improve my own understanding of my social environment and perhaps even aid others in understanding the world from my perspective.

525,600 minutes, two jobs, twenty pounds, a tripling of my daily pills to pop, one lumpy lefty, countless visits to various doctors’ offices, and three new diagnoses later, here I am. I guess, if you felt like a good stretch, you could say my life has been enriched. I would say, wanna trade?

Disability as a condition is not a negative thing. Much like my physical appearance, my body image in the realm of disability is a complicated thing. But I find it patronizing to hear ostensibly abled people try to paint over my struggles by calling it character building or pretending such experiences bestow a higher consciousness, an otherworldly wisdom to the experiencer, or other attempts to neutralize a person’s regret or frustration with hir life as a result of hir condition.

It’s one thing for one person with mental illness to say, “it makes my life interesting” or “life’s no fun if you’re not crazy” and so forth. Those comments acknowledge the complex effects a person’s disability has on their life, making things difficult in some areas, providing positive meaning in others. It’s a dark humor. “Character building,” on the other hand, is an attempt at erasure. Don’t make me uncomfortable.

I’m not quite sure how I got to that subject, but there you are. Welcome to my brain. My brain wants sleep, so it will bid adieu for now.

Thanks to Lauredhel for my first major link, to annaham for being my first blogfriend, cripchick and nezua for the encouragement, Melissa for a front page link, and Feministe for inviting me to guest-blog (I start next week), and the people I am sure I’m forgetting (see aforementioned brain). I appreciate all of that, more than I can say.

How the hell can Bush redefine abortion as “any of the various procedures — including the prescription, dispensing and administration of any drug or the performance of any procedure or any other action — that results in the termination of the life of a human being in utero between conception and natural birth, whether before or after implantation”?

EVERY ONE OF MY PRESCRIPTION MEDICATIONS FITS THIS BILL.

Including the Lupron, which is a Major Treatment during which we are very strongly advised to be double-extra-careful in the area of birth control, because it can cause major serious birth defects. The Lupron which I am taking to shrink endometrial implants which can fuse together my organs and completely sterilize me.

Fucking caffeine fits this description.

It’s not just oral contraceptives, folks. It’s treatments which have no relation to family planning whatsoever. Just think of all the prescription medications that would be restricted.

How the hell? How the FUCKING hell? Are there any lawyers in the house who can address this one?

Tagging this one under accessibility just to emphasize how much this policy would affect my medical condition and my ability to WORK, to HAVE CHILDREN, to LIVE MY FUCKING LIFE without debilitating pain.

Fuck.

I was on the T on my way home from a job assessment in Pittsburgh. I’d been shaky all morning, having difficulty breathing, upset tummy, and so on. I wasn’t altogether well.

It was five or so stops from my destination when I decided I had better take a pain killer. I’d popped one when I got to the building, but it wasn’t doing much for me. I couldn’t just wait until I got to my car, because that would be some time, and I had a long drive home and other things to do after that. With fibromyalgia, delaying a pain pill 20 minutes isn’t just a 20 minute delay and then the same relief you’d have if you’d taken it 20 minutes earlier. It means that it will take longer for the pill to kick in when you do take it, and it’s got more pain to kill, and it’s going to be less effective on the whole. Pain builds, so the longer you go without treatment, the worse you are when you get around to it, and the more work it takes to treat it (which makes things worse for you throughout).

So.

I didn’t have a drink. And there wasn’t really any way to get a drink, unless I wanted to waste an hour and a half getting off the next stop, wandering around looking for a restaurant or market, acquiring the drink, making my way back to the stop and waiting for the next trolley. Needless to say that wasn’t going to help my pain state either.

I’ve dry swallowed pills a couple times before. The last time I was fourteen or fifteen, and the memory is vague, but I did it. I mean, it wasn’t pleasant, but it wasn’t bad or anything.

So I pulled my pill case out of my purse. And I started saving up my spit. (Oh, stop gagging, you faker, you’ve done it before.)

My mouth was dry, though — happens from time to time; Sjogren’s, allergies? I don’t know, I’ve never really looked into it. Anyway, you swallow drugs with the spit you’ve got, not the spit you wish you had; I put the pill in my mouth and tried to swallow.

And the spit went down and the pill…. didn’t….

Let me pause to clarify something. This is half a generic Vicodin. It’s fucking huge. And this is no sugar-covered caplet or sweet smooth gelcap. It’s compressed powder with a light seal around the surface. And I don’t know if you’ve ever tasted Vicodin powder, but it’s basically powdered vomit acid.

And it was coating the entire inside of my mouth and throat.

OHGODOHGODOHGOD

I gagged and I heaved and my eyes almost rolled back into my head, I swear it — I spat the soggy pill into my hand and looked at it, trying not to puke. Tears were forming in my eyes. Maybe because I let the spit go down first? I sat there trying to save up more, but I kept swallowing in an attempt to get rid of the awful taste and sawdust texture. (Didn’t work.)

Eventually I held back as much as I could, and I gave it one more go.

And I failed.

I wrapped the pill and stuffed it in my purse and tried to distract myself. It didn’t work.

Of course? The train had to make every. fucking. stop between there and my destination.

It took another twenty or so minutes before I got to my car, and I headed straight to the Wendy’s across the street for a nice long drink. But I was tasting that shit for the rest of the day. At the end of the night when I poured my final glass of water — half to take my bedtime medicine, half to use the next morning for same — I tasted it again.

It’s almost gone now. Almost.

I’m not going to be trying to dry swallow any pills again any time soon.

Quick association test:

In the context of disability, what is the first thing you think of when you hear the words “assistive device”?

I’m going to guess it was a cane. Or a wheelchair.

If the first word to your mind was anything other than those two, and you aren’t already a disability activist, do let me know. I’ll give you a virtual cookie.

So, I thought I’d start this series. I don’t have a snappy name for it yet (not for lack of trying; “the crutch list” is about the best I could come up with) but I wanted to start putting these things out there.

It’s been on my mind recently. Lauredhel has been writing about accessibility and challenging my thoughts on the meaning of that word. Similar to the above quick-think test, I’ve got a virtual cookie for anyone who, hearing talk about making something “accessible,” doesn’t immediately think of wheelchair ramps.

Bear with me.

I have what is called an invisible disability; that is, the fact that I am disabled is not readily apparent. There is no reason for any given bystander to think that I am disabled (and isn’t it telling, really, that there has to be compelling evidence for a person to be considered anything other than fully-abled). Further, my particular disability (fibromyalgia) comes with a heaping case of self-doubt, thanks to the social context surrounding it. What that means is that I typically don’t think of “accessibility” as pertaining in any manner to me. Let me reiterate that, to make my point perfectly clear: I don’t feel like access for people with disabilities is applicable to a person with a disability.

I’ve been taught, in so many words, that accommodation for my particular condition is an unfair burden on the rest of the world, so I shouldn’t even bother asking. If it requires a change in the routines and behaviors of “normal” people, it’s untenable. If there is something I want to do, I had damn well better be able to get it done without any assistance, because it’s too much to ask of greater society to make any meaningful changes for my benefit.

In short, I am to sit on the sidelines and watch as life goes by. If the coach has the good spirit to give me a few minutes on the field, from that moment on, I owe my life to him. And after those few minutes have passed, for the rest of my life, I am to suffer in silence, never to ask for any favor again, lest my status as Grateful Crip be swiftly changed to Selfish Bitch.

I never really thought much of my diagnosis (age 12) for those first few years. OK, I had some difficulty in P.E. but I hardly even recognized that for what it was. My body the day before my formal diagnosis was qualitatively no different than my body the day after, and the same can be said of my self-image. For those first twelve years, I had been a “normal” child, which meant that the experiences I had as that child must also have been “normal” too. I’ve written in passing before about the fact that the pain I felt didn’t register as pain, because, again: I was a normal child, so what I felt must have been normal.

Anyway, following from that attitude: even after that diagnosis, the denial I lived in would not allow me to change what I did, or how I did it, as a result of my condition. In my mind, I was still “normal.” So any adaptation would threaten the image I had of myself — after all, “normal” children don’t hold their pen differently, and “normal” children don’t have to stop and rest when walking long distances, and “normal” children can stand for the entire duration of their shower. Therefore, I should be that way, too.

And I think the weight of my disability was more than I could handle at that age. That’s why I couldn’t let myself accept any change in my life as a result of it. If I did, I would have to confront my condition, face to face, and accept it and all of its ramifications. I think I knew instinctively that that burden was too great for me to knowingly carry, and in all the wisdom of a twelve year old, decided to pretend it didn’t exist while carrying it anyway.

And you know what, I hardly even knew that you could adapt your environment to better assist you in living your everyday life. It’s not as though there is a thriving public dialogue about life with a disability and how to get through it more easily. PWD largely live their day-to-day lives shielded from the public, except for the occasional appearance in Hallmark films and other inspirational kitsch. Society, in general, has little to no concept of what disability means to a person’s life.

So. I was thinking about my twelve-year-old self, and my eighteen-year-old self, and what it would have meant to me to know about so many of the techniques and devices I use now, and to really, deep down feel comfortable using these things, because there is nothing wrong with them, and you don’t have to be embarrassed, and you are not deficient, you are not a failure, you can hold on to your pride even as you use these things. It is not a statement of strength to deliberately refuse any aid. And neither is it a statement of weakness! Your use, or not, of such things is not a statement of spirit or character, period. It’s a method. That’s all. It’s a method. It’s a way of doing things. A way of living life. And God knows, if there is anything I learn in life, it will be that there are multitudinous ways of living a life, and no one of them is better than the other. They just are.

Does it say something about you that you put your left shoe on before your right? That you put your seat belt on before you close the car door? Or that you pull your pants up before you flush the toilet? Does it matter, really, whether you cut your pork chop into little pieces all at once before you start to eat or one by one as you’re eating?

It’s a method. It’s not an embarrassment.

With that said, I’m going to start writing about the products, ideas, and tricks I use to keep my roller coaster ride of life just a little bit smoother. If they help me, they’ll probably help someone else. And, in the meantime, maybe “normal” folks will understand a little bit better what it means to live with a disability. (This disability. My disability.)

Consider this, I guess, sort of like the family recipe box. I’m contributing some tried and true mixes. I figure, maybe other folks will add theirs. And maybe there’s a twelve year old out there who will be helped by it. And that would make me very happy.

(Ed. note: I wrote most of this late at night after a failed attempt at falling asleep, and once this is published I am going straight back to bed. I reserve the right to edit for clarity once I’m able to reread it in the morning. Thanks.)