This has been a rather curious endeavor, working at a state office that provides assistance to several disadvantaged groups — and being able to see things on the other side of that reinforced wall. It is an interesting perspective. And I think having a background (however limited) in disability rights and other issues of social justice helps me understand far better what is going on. I’m not sure about you, but I can hold two opposing ideas in my head at the same time and manage to see the truth in both of them. I am large; I contain multitudes. There are honestly many things that are beyond our ability to fix, address, or really do anything other than acknowledge, if that. Sometimes, there is nothing we can do. And yet — and yet. Are the way things are the way things have to be? When the way things are means our rights cannot be fulfilled, must we abdicate them? Are our minds, our worlds, so limited?

I think I’m glad this is a limited-term job; I am still debating myself over whether I can really handle this. But for the time being, well, I will. It’s who I am. And honestly, I love it. I only wish my body allowed me the option of doing anything else too.

So this is what I have been doing. I’m doing my best to restore, slowly and deliberately, a careful balance to my life. Come say hello.

amandaw on tumblr — for quotes, short thoughts, and other collections.

Surfing etsy for a couple incidental items (light-blocking sleep mask; neck warmer for the Pennsylvania winters, as scarves are too much fuss for someone who has trouble and pain with any movement while so bundled up) I stumbled across what looks like a wonderful store for people with any number of chronic conditions or injuries, including but not limited to my old friend fibro.

The store includes neck/shoulder warmers and scarflettes, keypad and wrist rests and drink cozies. The store and item descriptions indicate that they drew inspiration from the needs of their mother(-in-law) who has fibromyalgia.

The items seem, to this trained eye* to be quality-made, and made with the needs of the users close at heart. They aren’t the standard, mass-produced designs. The neck/shoulder warmer looks absolutely perfect for my own needs — moist heat to loosen and relax the tight, tense neck and shoulder muscles, but not too heavy, as the weight only exacerbates the exact problem I’d be trying to correct! And it’s shaped perfectly to cover precisely the area I need, as opposed to the traditional sorts which are simple oblong shapes meant to maybe cover a few-inch-wide area of the neck. And I’d love the wrist rests at work.

Every person’s needs are different, but if yours are similar to mine, this is definitely worth a look around.

The Ferris Wheels

A shot of the current front page

***

For those who aren’t familiar with Etsy, it is a site dedicated to handmade items, where anyone can open up their own shop and start selling. The wonderful thing about it is that the prices are very reasonable, for the most part (it costs about as much to shop at Etsy as at Amazon and other low-price retailers), there’s a much wider range of taste and style available, and almost every seller is open to customization — whether you’d like the same item with that cute little penguin fabric or you want to add a couple pockets there or you need a different size, or… I’ve worked with a range of sellers on Etsy on custom items and they’ve all been excellent, and I’ve been very happy with the products I end up with.

Other etsy sellers worth a perusal (I’ll mark those with whom I have experience):

utilitywear (there will be a post of its own for this one- purchase experience)
florspace (purchase)
umeblossom (custom purchase)
leapinglizards (custom purchase)
danielleloporto (I have had people stop me in the store asking about these wonderful little things - they save me a lot of time and energy and they’re also cute as hell!)
seabreezestudio (custom purchase, VERY easy to work with, quality stuff!)
bagonebagshop
simbiosisbyjulia
jpatpurses
oktak
charmdesign
jennalou06
oladesign
tahirih
lingglass
lobbyloucrafts
cutecumber
borsabella
happykatbags
heatherrlange

Take a look around — the links above are just the stores I’ve stumbled across that fit my personal taste (to varying extents) — there are many more items and styles available.

***

* Over my lifetime I have used so many different assistive items, in these categories and many others, that I can fairly accurately predict the comfort, quality and efficacy of an item for my needs based on its appearance and description (and occasionally on a tactile test, but I’ve found anymore I don’t even need that). Keep in mind that I have not purchased from this seller (yet!) but I feel very safe and confident in recommending the items even without that.

Monday, I start my first full-time desk job.

It’s been a long five months, stutteringly under-employed, thrown off balance by Uncle Eddie’s decision to freeze state hiring for the budget year (and he’s talking now of cuts yet to come), which ended my chances of procuring a state clerk job. I was hoping to be employed with the state (or county, who works off the same civil service test result list) for several reasons — good pay, great benefits, and most of all, security and stability. Working with a disability can be a realizing experience or a crushing one, depending almost entirely on the environment in which you work: your co-workers, your supervisors, company policy. With the state, I would know one thing: there is a very low likelihood of running into any trouble, and if I do, I can be reasonably confident that it will be taken seriously in the upper levels.

This job was approved ahead of time; it is temporary, until early spring, processing energy assistance applications. I may be eligible for unemployment when I am laid off, which may actually be an ideal situation considering my disability: work one third of the year, rest the remaining two, then start again next winter. I may also be eligible for transfer to any of the various positions for which I was being considered when the hiring freeze came down. Regardless, I will have opportunity even when this position ends.

We can now pay off our maxed-out credit cards (which have borne our living expenses while I was without income) as well as some other debt (for instance, the car I totaled last December). I now have a predictable weekly schedule around which I can plan my medication, my laundry shifts, my showers (I have already decided: Saturday mornings and Tuesday nights). I will be able to afford the little things I have put off during these five months — a memory-foam bed topper (down, surprisingly, is not nearly so good for my body as one might think) (and though this item seems like a luxury, keep in mind my stress, pain and fatigue throughout the day stems directly from my insufficiently-restful sleep), a new shower chair, comfortable layering pieces for wintertime. And the particular job also solves a couple major problems in my personal life in ways too complicated to explain here.

2008 has not been kind to me. Things I never imagined could happen to me, things I have constructed an identity around avoiding, have happened. My late June vacation was the one bright spot in my rear view mirror, but some very bad news broke soon after and dampened any remnant joy I may have had from it. (I still have not processed those four thousand pictures; until recently, it was too emotionally painful.)

But finally, now, something has gone right. And recent weeks have been, on the whole, positive. The stability I have been chasing for so long, it seems, has finally arrived. And I couldn’t be happier.

Yet more bad news for the upper-class white liberals who are perpetually Concerned About Your Health(TM). Go figure.

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

I had always meant to expand upon this topic, but never found the right words for it, succinct and meaningful. But, well, that’s not exactly my style either.

My job situation is still shitty, and I’m currently part-timing at a retail pharmacy as a cashier. (Sample day: Mid-20s white guy “discretely” [read:blatantly] takes a picture of me on his cell phone as I am kneeling down assembling a battery display; someone shits in the toilet paper aisle [seriously! a person! took the time to unbutton their pants and all!]; I set alarm off while fetching pushcart from back room.) “The injustices of retail,” I said to my coworker, as I nursed the scratch on my finger from pushing that toothpick in a little too hard.

But honestly, I still do, and always have, appreciated working with the public. It’s the kind of thing that reeks a little too much of bullshit to say in an interview (”Really! I love when people show visible surprise at the revelation that I can do third-grade math!”) but, well, it’s true. I like people. I am, fundamentally, the kind of person who likes spending time with people (though my severe social anxiety always masked it). I’m not a butterfly by any means — good God, I can’t stand parties, pubs, or the mall at Christmastime, and I always need time to recharge after any extended social time — but I do enjoy interacting with a variety of different people, and there are days I go home smiling because of it.

Today I met a man named Robert. He stopped by to ask how long a sale price on a can of Folgers was supposed to last, and we ended up chatting for a good ten or fifteen minutes — the line piled up behind me, but I didn’t give a damn. Robert was in a wheelchair, for whatever reason, and was there to pick up his medication, whatever it was. He got his “paycheck” on the third of every month, and only the third (read “paycheck,” there, as Social Security disability check) but right now he was fighting with Verizon, who apparently shorted him half a hundred dollars worth of minutes on his phone, and he was going back-and-forth with them to get the situation righted, and anyway he wouldn’t be able to come back for his coffee til then. I was nodding and exclaiming the whole time as he was describing how much fighting he had to do — to get his transportation to the doctor, to work, to the grocery store; to get his medicine filled correctly and on time; to keep his welfare benefits flowing smoothly (there is apparently a very common mistake that gets made on his account every couple months, and he then has to make a dozen calls here and there to get things patched up, and then a few weeks later some new worker makes the same mistake again, and…) etc. etc. etc.

God did I identify, and I didn’t have to deal with the half of what he did. The fatigue and the worry and the energy and the stress and the wasted time — and when I related as much to him (having by this point unfolded my stool and sat down over the counter) he laughed it off — “Oh hell, I’m used to it by now — doesn’t bother me.”

I hope I never get to that point. No one should ever have to get to that fucking point. No one should ever have to spend half their waking hours, no fucking exaggeration, correcting other people’s mistakes just to keep the basic necessities of life covered — and then getting attitude from those same people for being a pain in the ass to deal with.

This is a serious time sink for the ill and disabled. It is time that could be spend — you know, maybe working? bootstraps and all — could be spent writing, could be spent playing board games, or taking a bath, or spending time with loved ones, or going out to eat — or any number of other things that are totally productive, constructive, positive things to do — which, to varying effect, do make contribution to wider society.

And it’s a lot of time. This is why I call it the second shift: much like the second shift of professional women, who arrive home from work to do the domestic work their husbands do not do: this is a disproportionately larger share of time spent fighting, always fighting, pushing determinedly (or tiredly) through near-constant resistance.

Resistance — truly the best word for it — it is as though “normal,” “healthy” folk are able to move throughout the world uninhibited, like pushing your hand into thin air — but sick people, disabled people must move through a world which is set up to prohibit their full participation — like pushing your hand into a thick heavy bog.

That is privilege. The ability to swim through your sea with nary a care, completely obliviously unaware of the freedom of movement you are so fortunate to have, while the rest of us have sand bags tied to our limbs, anchors roped round our waists, our feet set in cement blocks… and to look back at us and ask, “What’s taking you so long?”

It’s exhausting. I cannot convey in words how exhausting the fight is. Always on the defensive, always saddled with the knowledge that your basic needs require a struggle, while everyone else’s basic needs are pretty much a given so long as they put in at least a half-assed drop of effort. It’s not even just time spent, it’s energy.

Look at it this way. How do you build muscle? You subject your muscles to resistance, just enough to create thousands of tiny little tears in your tissue, which your body then, with rest and nutrition, repairs — which leaves you stronger.

But this does not mean that all resistance therefore makes you stronger. Because the more you pile on, the more tiny little tears you make. And the less time you have to rest, to eat and drink well, to tend to your bodily health, the less of those tiny little tears get repaired. And you find yourself, now, with millions of tiny little tears, and not enough time or fortitude to repair even only the thousands you had before this overload.

Which means you don’t get stronger. You get weaker.

“What doesn’t kill you makes you stronger.” What unadulterated bullshit. And it has the bonus effect of implying that those who do not feel stronger after a difficult incident, those who feel fatigued and despondent, those who see themselves as in a worse place than they were when they started — it implies that those people are choosing their fate. It implies that those people get something out of their misery.

Say, all you sick people out there: does any of this sound familiar?

What’s taking you so long back there?
I get it –you must just get off on being a victim.

Robert and I wrapped up our chat — turns out he lived in Anaheim for awhile, and also attended Cal State Fullerton; what a small world! — and I moved on to the next customer, affecting the smile and the sing-song customer service voice. Hi! Do you have your [Pharmacy Name] card with you today?

But it was nice, if only for a moment, to connect with someone. To, prompted by the unspoken invitation of a new friend, reach down into myself, and connect with the real person deep inside.

Maybe our struggles make us stronger; maybe they make us weaker. It doesn’t matter. We work with the tools we are given, and we still make something whole and beautiful, something worthy, something satisfying. Why do we have to come out of every fight bigger and “better”? Why can’t we be broken and hurt? Why can’t we cry, why can’t we curse, why can’t we be angry and disappointed and let down sometimes?

Right — because we wouldn’t want to make the rest of you face up to the damage you do to our lives. We wouldn’t want to “burden” you, wouldn’t want you to have to do anything to maybe reduce a little bit the fighting we have to do to live our lives. We wouldn’t want to make you have to think about how your actions and attitudes affect other people — wouldn’t want to make you uncomfortable.

When we are allowed to be angry, to be sad, to be bitter and disappointed, we are allowed to be human. When we are denied these emotions, we are denied our humanity. We are denied the full range of human experience.

It is fundamentally unfair — to weigh a person down disproportionately — to pile more and more shit atop their back — and then to grow indignant when that person lets out a sigh under the pressure — much less looks straight at you and lets rest the responsibility where it belongs. But this is how we treat each other — immigrants, queer folk, the disabled, those of color, the poor and disadvantaged — because we are fundamentally uncomfortable owning up to our own power.

Life would be so much better if we realized how much power we all have over each other — and how much power everyone else has over us — our interdependency. It is the concept out of which disability grows. And life would be so much better if we could look at this fact and see, not

scary,

or

unknown,

but

opportunity.

Consider my scenario.

The eligibility requirements for Social Security Disability, in a nutshell:

• Have a medical condition (mental or physical), or any combination of multiple conditions, which
• Impairs your ability to work for pay, such that
• You cannot pull Substantial Gainful Activity, which is currently (for 2009, non-blind) defined as
• $980/mo.

Do the math: that comes out to a yearly wage of $11,760 before taxes. That doesn’t have a whole lot of buying power, even in flyover country.

I applied for disability, and was approved, in 2005. At the time, SGA was defined as $830/mo. At the same time, I was seeking residence in Orange County, California.* The cheapest place I could find (with access to a reasonable bus route to my university) without rooming with strangers was $860. That was for a “bachelor” apartment without so much as a kitchen.

My disability payment — as a Disabled Adult Child (what an unfortunate name!), it was based on my mother’s work record — was calculated to be, if I remember correctly, $844. That was a California payment — the federal payment at the time was (iirc) $579.

So, my disability payment didn’t so much as cover rent. It didn’t help that my old buddy Gov. Schwarzenegger kept cutting the cost-of-living adjustments for the blind and disabled, in order to balance the budget shortfalls created by his tax cuts for the wealthy. Priorities, people!

Anyhow. SSDI recipients are eligible for Medicare coverage beginning their 24th month of benefits. Which is nice and all, but it meant two years of paying out-of-pocket for the drugs I needed to be well enough to leave the house for more than five minutes at a time. Expensive drugs, needless to say, which had no cheap generic alternatives.

But time passed, and as of February 2007, I became eligible for Medicare. Finally! I was able to seek full treatment for my medical condition, no longer doing the bare minimum to get by.

But as things improved, I faced a conundrum: With the treatment Medicare paid for, I found myself better able to work… enough to earn something approaching SGA… and my condition was only improving. This would have resulted in the loss of my disability benefits, which would also mean the loss of my Medicare coverage. But the private market refused to insure me. Which means I would no longer have been able to afford the treatment that allowed me to work. So my condition would have deteriorated, rendering me, again, disabled. At which point I would be eligible for Medicare… and…

A vexing situation, in my case “solved” by my loss of benefits upon marriage (a feature of the DAC program). Were it not for that — or if I fail to remain married for the rest of my life — I would be back in the same endless circle.

And I know I’m not alone.

- - - - -

*Spare me the “Well, you could have moved somewhere cheaper!” Most people can’t simply pick up and move sight-unseen. Especially the poor and disabled, who can’t exactly hop on a plane and just count on reliable residence and employment being available for them. For the most part, people who do not enjoy considerable economic privilege are geographically immobile. If they haven’t already lived there and they don’t happen to have family there, chances are it isn’t going to be a smart move for them to move there. The ability to research a new area, conduct a job search from afar, and pick up the pieces after the move (you’re going to have to find new: furniture, vehicle, auto and home insurance, health insurance, family doctor, specialists, etc. — the latter which are a huge burden [do you have any idea how hard it is for the health-challenged to find a good, communicative, knowledgeable, effective practitioner to treat their ills?]) is a privilege, and no person should be judged for lack of it.

Quick hit today, out of CAPAF’s report on how McCain’s health plan would affect women — well worth a read on its own — noted without further comment.

… Sen. McCain’s plan would encourage insurers to eliminate coverage of basic health services. These state requirements include:

* Twenty-nine statesƒƒ require cervical cancer and Human Papillomavirus screening Sixteen statesƒƒ require coverage of the HPV vaccine
* Thirty-one statesƒƒ require comprehensive drug benefit plans to include contraception
* Twenty-one statesƒƒ require coverage of maternity care
* Forty-nine statesƒƒ require breast reconstruction

a husband who will:

1) go to sleep around 11 p.m. as usual; 2) wake up at 2 a.m., 3) fumble into pants and shoes, and 4) drive a mile and a half to your pharmacy; 5) pick up and pay for your medication; 6) drive home; 7) get a glass of water, 8) wake you up, and 9) make you take your dose; 10) get undressed and 11) go back to bed; 12) wake up at 6 a.m. to get ready for work.

I have not yet received my Flexeril in the mail. It should come in a couple days, but I’ve been out since Saturday. I’ve coped alright until today. Early in the afternoon my back spasms returned with a vengeance. For about two hours I sat through continuous spasms without stop, every ten seconds, bam bam bam bam one right after another. They subsided some after many painkillers, but a couple hours later I had a strange nervous attack. My whole body shook and swayed, and my vision went really screwy (inability to focus or control aim).

I ended up at MedExpress, where we waited a half hour and paid $25 to walk back out with a prescription for a week’s worth of the Flexeril to tide me over til my shipment came. Husband drove me to CVS, where we dropped off the script and wandered around for a few minutes waiting for my name to be called. When we went to the counter, we were informed my insurance wouldn’t pay for it. Well, duh. I said that I wanted to pay cash for it and the pharmacist told me that my insurance wouldn’t allow the prescription to be released until 2am tonight.

… wait, what?

What the hell was the point of this whole endeavor? To make me suffer through 30 minutes of Wolf Blitzer and deprive my already stressed husband of another hour of sleep? To further drain my already anemic checking account?

I give, I give! Uncle! Here, I only got $14, you can HAVE IT, just leave me alone already!

Why didn’t the pharmacist just tell me “You can’t fill this if your insurance has already paid for this month’s supply”? I mean, I told her what was going on when we went to the dropoff counter. Can my insurance really tell me I’m not allowed to have medication that a doctor prescibed me except when they pay for it, under their terms?

I just don’t get it. There’s a disconnect here. As long as my insurance isn’t paying for a treatment, they shouldn’t have any fucking say over what I can have, when, where, how much, for how long. I’m sorry, they just shouldn’t. And my pharmacy should not be complicit in denying a suffering chronic pain patient much-needed treatment.

Especially a medication as tame as fucking flexeril.

As far as I see it, the only parties who should be involved here are me, my doctor, and my pharmacy. Unless I choose to involve them, my insurance should not enter the picture. If they do, they should only be allowed to assert control over treatments they are paying for. If they wanted to dock me a dozen pills from my next fill, fine. Or if they wanted to charge me however much to make up for the “extra” medication I’ll end up having. Or if they ant to prevent me from refilling until however-many-days after what it would’ve been without today’s script. All of that is — well, it whiffs of bullshit but I can understand it, at least. But how did we make the jump from that to this? Can someone point out the missing piece here?

Hell.

You’d think, in a situation involving a patient, a nurse, a doctor, a pharmacist, and an insurance agent, at least one of those would be in it for the betterment of the patient — right? ‘cuz I’m batting oh-for-four right now.

Yes, that’s my bra strap. Why are bra straps so scandalous? OMG! That woman is wearing a… BRA! (faint)

My doctor is massaging my insurance companies to pay for me a good TENS unit.

I have been using the electrical stim at physical therapy for a little over a month and combined with some simply stretching exercises to help build strength and flexibility, my awful lower back pain is mostly gone. Woohoo!

My therapist sent me home with a loaner unit on Wednesday and I’ve been playing with it ever since. I love it. It takes some trial and error to get it to stick in the right places, but it’s helped quite a bit.

And it’s something I can have on my person at all times — not just at home (hard to keep a gel pack on my back all day) — that interrupts the pain signals, meaning I can reduce my pain killer use correspondingly. The fewer narcotics I take, the better. Especially with that full-time desk job I will be starting in a couple weeks.

But I am a naughty girl. I have been browsing Etsy for a cute and stylish case to carry it on my hip…

Welcome to the fatosphere, amandaw.

5′8″. 173lbs. BMI 26.3. Sizes 12 and 14 top and bottom. 38-34-44.

My habits have not changed. I eat the same shit I ate six months ago, and get the same amount of physical activity (trust me, that is carefully monitored). The only thing that’s changed is the shot in the ass I get once a month.

After my body settled down from puberty, I was 5′8″, 110lbs, 16.7 BMI, sizes 6 and 8, 32-25-36. I had no appetite and was visibly undernourished. Fending off accusations of anorexia, I would insist that “I’m not fat; I have fat.”

Just before I turned 19, I started on the Lyrica, which gave me a normal appetite. After about a year of slow and steady weight gain, my body settled in to 5′8″, 150lbs, 22.8 BMI, sizes 8 and 10, 34-30-40. And there my body stayed for just about three years.

Three years during which I lived a variety of lifestyles, to use the popular vernacular. I ran around college eating quite a bit; I ran around college eating almost nothing; I sat around my mother’s house eating fast food at least five times a week; I started working on my feet eating healthy portions of home-cooked family means (sandwiches, chicken, grains, pasta). And I stayed the same weight through all of that.

Last night, I went to a friend’s house to try on suits for an upcoming job interview. She used to work as a paralegal, so she had an abundance of suits. She is, well, the average American woman size-wise. She had several suits mostly in 10 and 12 but across a range of sizes.

I tried on every suit. I think there were seven or eight.

None of them fit.

OK — one fit… if I didn’t zip up the pants.

I was fucking humiliated.

I haven’t been able to fit my own jeans recently. I am fortunate that the only thing I’ve had to leave the house for recently has been physical therapy, so I’ve had official excuse to appear in public wearing sweat pants.

The friend was very helpful, and we ended up at Kohl’s where she bought me a fitting skirt, pair of pants, button-down top, and thong.

(Which makes her the first person to ever buy me underwear.)

I was not well. I had done far too much that day, to begin with: wake up early, physical therapy, driving to Canonsburg and back for aforementioned syringe in the ass, and shower, all without a single pain killer. I should have known to take one before going to the friend’s house, because trying on clothes always exhausts the hell out of me (I’d put it on the level of a long shower in terms of physical cost). But I didn’t until all the clothes-trying-on was done.

The physical consequences should be obvious, but something else happens when I’m in that kind of state. My brain goes blank. I am putting so much energy into staying awake, alert, upright, and minimally active that I don’t have any brain power to spare — to form coherent sentences, find the right word for the idea I am trying to express, offer responses that are relevant to the topic being discussed, or just plain make any sense.

Being social in this state is hard enough. It’s even harder when there’s the dark cloud of humiliation hovering over your head.

I looked myself in the mirror. I arched my back, sucked in my stomach, straightened my shoulders.

The gut didn’t go away.

God. I don’t know how to say this. It’s hard. It’s really hard. Up until recently I still saw myself as the skinny chick. My brain still thought it was stuck in the body I inhabited as a teenager.

And now? Now I’ve finally caught up: my brain feels like it’s stuck in the body I inhabited those three years prior to the Lupron.

I was OK, mostly, as I grew. I’ve been involved in fat acceptance for a while now, and body positivity has been a pet issue of mine for years and years; I trained myself to stop finding things to disparage, whether in myself or others, and instead find things to treasure. I accepted my fat rolls, and welcomed the substantiating of the tits. I admired my ass. I was building muscle; my thighs are thick and solid and I rather like them that way.

But now I can’t fit in my fucking clothes. And it’s fucking embarrassing.

***

I have a lot to deal with, personally. But right now I am fervently hoping that cessation of the Lupron will go hand-in-hand with shedding of the weight I’ve gained. I’m already damn sick  of it. The first month I suffered worse pain, dizziness and tremors and fainting spells; I had two months of reprieve after that, and in the last month the back pain came back like a boomerang and hit me in the ass, and brought with it cramping, nausea, and a scary amount of hair loss.

I have two months remaining. One more shot.

I’m scared. I’m scared I’m going to keep gaining. I’m scared there are some new and even more bizarre side effects in store. I’m scared that after the Lupron is done the pain will come right back. I’m scared it won’t have done anything.

I’m scared that all of this will be for nothing.

I’m scared that the Depo won’t do my body any better. I’m scared my periods are going to be as bad as ever when I come off the birth control. I’m scared we’ll end up running into trouble trying to conceive. I’m scared pregnancy is going to wreak havoc on my body. I’m scared of birth. I’m scared I won’t be able to keep up with kids once I have them. If I have them.

Most of all, I’m scared the pain is never going to go away. I’ll be thirty years old and living with the knowledge that I’m not even halfway done living and I’ve already exhausted all my options.

And when I look at that prospect, honestly? I want to die.

***

I meant this post to be about body dysmorphia. Fat. It ended up being something else.

I don’t know. I’ll be ok. But I’m struggling.

You kept me afloat financially for my first adult years in California, and you kept my husband and I out of debt for our first year and a half in Pennsylvania.

Dealing with you was always frustrating, but damned if I’m going to let anybody deliberately starve you to death.

I think people would do well to remember that what they pay in FICA goes into a pool of money that funds not only retirement benefits but also benefits for the blind and disabled. If Social Security were reconfigured to be mandatory individual IRA accounts rather than the rolling system it is now, the blind and disabled would be shit out of luck.

People would also do well to remember that they might become disabled any day.

Finally, people would do well to remember that in reality, almost no one has a cohesive nuclear family with money and bed space to spare for a person permanently unable to contribute financially. Very few people have a savings of more than a couple hundred dollars. Not every city has a homeless shelter. Not every person has good will with wealthy benefactors; not every person has friends in good places. Not every family is functional, or even intact. Not every country, state or county invests in a strong set of public welfare programs. I could go on.

The debate around Social Security always rests on the assumption that the SSA is simply a retirement fund. It is not so.

Without Social Security Disability Insurance and Supplemental Security Income and the Medicare benefits I still had to wait two years for, I would have to have remained living with my (mentally ill and emotionally abusive) mother, and my disabilities untreated. Between those two things, I can say with a fair amount of confidence that I would not be where I am today.

I would have killed myself.

Cheers.

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.

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, to be able to share the shower with my husband — he will help me when I ask him to, but really, I just enjoy sharing that time with him. It’s not really sexual, though I do consider it a form of intimacy. 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.

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.

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.)

Y-you mean… the handicapped have… sex?!???!

BFP touched on it in her post, but I wanted to emphasize the cultural reaction to a person with a disability* being at all intimate with a fully-abled person. Not only sex, but also intimate relationships. They reel. They gag. They wonder what must be wrong with the abled person for wanting to have anything to do with that… thing.

Who would want to fuck a cripple, after all? Why would anyone stay in a long term relationship with someone who is disabled? How can it possibly be a relationship of equals?

And that’s just it, isn’t it? The disabled person is not a full person — sie is inferior.

And who would want to deal with, you know, the wheelchair, or the medications, or the panic episodes, or the whatever… dealing with the disability would be too much of a burden, you know. And someone has got to be crazy to be willing to take that on. What could they possibly see in a cripple to make up for that extra load to carry?

I’m a far different person than I was five years ago, when Matt and I became “official.” Five years ago, I hated myself — in the way that the sun is kinda hot, or the Pirates aren’t too good at that baseball thing — that is, severe understatement. And I had quite the complex of why the fuck this young man would have any fucking interest in me, because clearly I wasn’t worth the trouble. This was fed by my mother’s Issues(tm) about men (she never knew anything but abuse, so she had nothing else to teach me) but it was also connected to my disability. I was only just learning that my life was going to be completely different because of it, and coming to terms with the fact that it was real and I was not normal and I couldn’t just breeze along through life as though I were normal anymore. So I was very, very insecure. And here’s this slightly older kid who struck up a friendship with me a year or two ago, and we connect pretty well and everything, and waitasecond he’s actually interested in me?…

My first thought wasn’t “WOW!” or “AWESOME!” or “*squeal**gurgle**lovestruck*” or “OMG I have to go tell my girlfriends!” — my first thought was: “WHY?” Why would this awesome guy have any interest in ME? I’m useless, and ugly, and worthless, and I’d be a huge burden, being sick all the time, and dragging him down, and why? Why?

I didn’t get a “honeymoon period.” I spent the first two years of our relationship, every time he would compliment me or say he loved me, explaining to him why I was undeserving of his consideration — or just asking him “why?”

And you better damn well bet that just about every pwd out there has jumped through those same hoops at some point…

*I hesitated in using the word “disability” to describe Troyer’s condition but really, that’s the class of people we’re talking about — people whose bodies/minds are just different and who have multiple obstacles to free, unrestrained participation in society. And the objection to using the word “disability” for this condition or that condition comes in part from a fear of the pejorative sense connected to the word “disability” — the negative connotation, the feeling that it makes a person deficient, less than. And folks, that’s what disability activism is devoted to fighting. I know there is fair disagreement among the disability community but, for lack of a more serviceable word, I’m going to try to own this one.

* The fact that The American Prospect has a “Religious Right Watch.” Sarah Posner’s work has all the substance of a celebrity gossip blog. There is palpable disdain toward the groups religiosity — which is distinct from their political involvement. I don’t talk much about religion here, mainly because it is a private matter and it doesn’t come into play with most of the stuff I write about. But when I see the “latest update” I feel like a rat in a cage, looked down upon, my every movement tracked and reported as though it is of great importance to the outside world. But is it? I feel like the figures in question are monitored not for their danger to progressive policy, but for their religion, full stop. Isn’t it just so funny?

* The language that is used to Other the disabled. Sweet Machine highlights the work of Susan Sontag, examining how “grave, incurable illnesses (particularly cancer in the 20th century and TB in the 19th) get appropriated as metaphors for moral conditions, political events, and the like — and then the negative connotations associated with those metaphors are extended back onto the people who actually suffer from the disease.” Considering the recent discussion at Feministe about the use of words like “crazy,” “insane,” “psycho,” “demented” etc. I think this is an important point to make. For the vast majority of people in our society, the only model they have to reference when they come into contact with a pwd is the concept of that disability, or disability in general, that has been built up in their minds. And that’s where our “ironic”/”sarcastic”/”irreverent” use of these words comes into play — we associate “crazy” with, say, the religious right, which means that they are Irrational, and Silly, and Dangerous, all at once, and those associations are reflected back onto the people who actually live with the condition at hand. It is not a conscious process, but again, it happens, and the more we use these words as a shorthand for all these negative traits, the further we reinforce a structure that contributes to the oppression of the disabled every day. Maybe it doesn’t really feel offensive when someone uses the word “crazy” around me, but that doesn’t mean that these tropes aren’t being steadily fed even right this very moment. And it’s not limited to mental illness, as SM explains; it also applies to fat — and to “gay,” and “retard,” and “gyp,” etc…

* When issues that are deeply important to millions of people in this country are glossed over because they might also be expedient to someone else with an agenda. See my sputtering below about Jezebel, fibromyalgia, drug therapies and Big Pharma; see Mindy’s guest post at Hoyden About Town on advertising companies and women’s products; see TAP’s Dana Goldstein wax political about Obama’s campaign actually centering women’s rights as an issue that includes more than simply white middle class women’s access to safe abortions. Those are just the examples off the top of my (very cluttered) head. Sometimes, people’s actual lives don’t fit neatly into your ideological narrative. And if you really want to be a friend to those people, you’ll turn off the “irreverent” macro and listen to their actual concerns. (Can you tell I’m really pissed off about this stuff?)

* The fact that my emails to my husband at work keep getting bounced back to me, and I can’t shake this anxiety, the trembling and heart racing and shortness of breath that comes with certain triggers, one of which is confronting people who beat upon the “fibromyalgia is bullshit” (still the leading search term to this blog) drum in service to their own egos. Usually, rambling at him helps me settle down, but I can’t really fit the jumbled contents of my brain into a 160-character SMS.

* My continued unemployment, which is going to screw up our finances so hard. I am looking around but I worry about the insecurity, the fact that I didn’t have much choice in quitting because of my disability, and the fact that my prospects are severely limited because of same — which means I’m likelier-than-not to remain unemployed for the foreseeable future. It’s unsettling.

* Pantyhose.

Hmmm.

What Vague Pharmaceutical Industry-Invented Malady Do You Have?
Fibromyalgia. It sounds so daunting — like angina! which also sounds like vagina, or chlamydia. And if the pharmaceutical industry’s multibillion-dollar marketing machine has any sort of pathway into your consuming psyche, you’re probably aware of this hot new disease. Hasn’t the industry gotten so much better at naming new maladies since the whole dubious “restless leg syndrome” thing? Anyway, here’s fibromyalgia in brief: it affects primarily women around their middle ages — potentially 10 million of them in this country according to advocacy group, which means something like one in five. You’ll know you have it if you start to feel “chronic, widespread pain of unknown origin.” The pain won’t respond to anti-inflammatories, and no one knows where it comes from really, so instead of trying to sell you on something to soothe the pain, the pharmaceutical companies — namely Pfizer — is trying to soothe your brain’s perception of pain. Clever! Okay, so here’s the shocker: some people think fibromyalgia is a bit, you know, fictionyalgia. And “some people” includes the doctor who named it in the first place.

Why invent a disease? Well, if you’ve got a drug with a limited market — like Pfizer’s Lyrica, originally developed for seizures, it’s pretty genius business to make up a mysterious new ailment that a lot of people could potentially have or be scared they have. Where do you think ADD came from? What about “bipolar disorder”? “Irritable bowel syndrome”? Oh sure, those diseases affect one in 1.5 Americans, and we have them too, but:

…Those figures are sharply disputed by those doctors who do not consider fibromyalgia a medically recognizable illness and who say that diagnosing the condition actually worsens suffering by causing patients to obsess over aches that other people simply tolerate.

But why tolerate when you can obsess? And speaking of obsessing, did you know ADD makes people obsessive? I should be done with this post already but I didn’t have enough amphetamines today. What about you?

Moe, the post’s author, later “apologized,” saying:

Which brings me back to an important part I was trying to make when I posted insensitively about fibromyalgia the other day… We like to think we make rational purchasing decisions borne of a thorough survey of all the available options — or that at the very least, we are creatures of our own innate needs and desires. I can only assume that this is why a lot of you got so defensive when I joked that fibromyalgia was a “vague pharmaceutical industry invented malady.” A few of you turn out to have fibromyalgia — and “restless leg syndrome”, and whatever else I treated with my signature careless disdain. I’m sorry guys; I made my point less thoughtfully than I maybe should have. We all have health problems. But right now the most highly -capitalized, influential and consumer-savvy source of all that we know and learn about those problems — the developers of the drugs, the sponsors and publishers of their studies, the sources of continuing education to your doctors — is the pharmaceutical industry, and the pharmaceutical industry exists to convince us that our problems are “syndromes” necessitating a pill you take once a day.

Yeah, OK, that sounded totally sincere — NOT!! Haha, look, I’m being irreverent!

No, what you’re doing is telling me that the pain that has caused me to nearly fail out of high school in my final semester, drop out of college and remain bedridden for weeks and housebound for months afterward, drop out of college again a year and a half later, quit work, quit work again, and quit work again all within the past 14 months, is an invention of the Big Bad Evil Medical Industry, and that the medication that pulled me out of my houseboundedness and allowed me to even go to college that second time (during which I actually completed five classes, the only ones on my record to this day) is nothing more than snake oil.

To which I extend a hearty fuck you.

As I pointed out the other day at Hoyden About Town, a lot of people seem to get a huge kick out of declaring helpful products useless, and the people who use them brainwashed — in so many words — because after all, the companies who distribute them are only trying to make a profit off of our poor gullible asses.

What I find incredibly amusing is that I, one of those apparently intellectually-challenged souls, have actually read the research on this condition and its treatments, while they, the Wise Knowing ones, know approximately shit about any of it.

Throughout the 1990s, fibromyalgia was regarded as a “wastebasket condition,” a label to throw at hysterical, hypochondriac middle-aged women who were being a pain in the ass by demanding that their doctors actually give a shit about their patients. (Oops, sorry, I’m being irreverent again!) Nobody really knew much about it, except that it was totally a disease of old Faker McFakersons, the crazy old fat women who lounged about the house all day stuffing their faces with donuts and watching the cable they could afford even as they were applying for welfare benefits and we all know the stereotypes, so I’ll stop there.

Then some idiot got the bright idea to actually conduct clinical research on the condition and they started finding out that hey, this doesn’t seem to be psychosomatic at all, in fact there are distinct physiological differences between fibromyalgia patients and healthy controls, mainly in the nervous system and related parts of the brain, and all sorts of peripheral findings like sleep disturbances and pain “memory” and the like.

Huh. Who would’ve thought?

And now we’re into the new millennium and guess what: major medical groups still aren’t really paying a whit of attention to the condition. The main treatment is tricyclic antidepressants, which worked about as well as a single extra-strength Tylenol works on a severed leg (that is, it does some measurable amount, but only hardly), and doctors are still being dismissive assholes, leaving fibromyalgia patients to fend for themselves in managing the condition, often falling on the alternative world, which is going absolutely crazy pitching cures and panaceas to people whose problems stem from aspartame intake to phosphate buildup to an insufficiently positive outlook on life.

Then, in the middle of the aughts, BAM! All of a sudden, a single pharmaceutical company takes notice of the condition and thinks hey, here’s a market to be exploited! And they pump money into a promising new drug called pregabalin, which is an anti-epileptic drug that works by depressing the central nervous system, and it seems to actually have measurable impact on the pain of fibromyalgia patients in double-blind randomized trials!

Huh. Who would’ve thought?

And it takes several years to move through the whole FDA approval process, not without its bumps-in-the-road (including, recently, a proposed black box label), and Lilly decides to cash in on the fun with their Cymbalta, and other companies throw their spaghetti on the wall, which doesn’t really stick (sorry, milnacipran) but in the end, there is an Actual FDA-Approved Treatment For Fibromyalgia, which honestly does go a long way in legitimizing an unfortunately-maligned condition.

But when the commercials start airing, the bottom-feeders of the world heap derision anew, basking in the glow of using the suffering of the already-overburdened as a cudgel against the only group that has ever paid any attention to their condition in their quest to stake out a position of Purer Than Thou irreverence.

Ignore the fact that the condition existed decades before Big Pharma ever caught wind of it, which puts a kink in the whole “Big Pharma invented it out of thin air to pad their pockets” line.

Because if it comes from Big Pharma, it must be a lie. Make sure you keep your eyes covered so that you never see the lives of the actual people in question, who make have quite a different story to tell you.

But eh, why worry about them?

Or maybe women suffer from chronic fatigue and muscle pains more often because they often have to work full time, care for children, run errands, and do all the housework while the husband kind of hangs out. Find me a hormone to correct THAT.

I’m running on a headache and a sweat rag right now, so please excuse any sloppiness. Remember, it’s all Pharma’s fault.

(Where did all this come from? Jezebel’s rise to prominence in the feminist blogosphere, mainly. We all read blogs with whose every opinion we do not always agree, but I wanted to make sure this offense is officially called out, so at least people have a more accurate picture of what it is they’re supporting. This is the language of hatred. This is the culture being encouraged on this site. Please, be as mindful of these things as you are of bigotry against women. Thank you.)