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

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.

Catblogging will return on Friday.

***

My body is mine.

There are seven tumors in my breasts. They are benign.

Two of them are palpable on the surface at one o’clock on my left breast. The size of ping pong balls.

I don’t bother to self-exam anymore. I know they’re there. I don’t want to be reminded.

***

You know the slur idiot-savant?

I know its counterpart. They are called parent-saints.

There is a reverence simply unparalleled in this society (with the possible exception of professional athletes) reserved for these people.

What earns them such a status? They didn’t terminate the pregnancy instantly upon learning of the disability.

There are no standards beyond that. I do not exaggerate. It does not matter how a parent treats a disabled child. They might even beat them, and their actions will be excused because after all: they are dealing with a heavy burden, so who are you to judge?

And that’s it. Upon knowledge that a child has a disability, that child is no longer a child. Sie becomes a burden. In familiar words: dead weight. Hir humanity is erased altogether. Sie has no curiosity, no sense of mystery or delight, no joy or sadness, no hurt or relief. Sie learns nothing, hir growth only physical. There is no sentience.

And so the relevant facts about hir have nothing to do with how hir environment affects hir. They have entirely to do with how sie affects her environment.

Which is why “choosing” to keep a disabled child is cast as such: an active choice. Because the default assumption is that such a child is not worth keeping.

After all, no one wants to be saddled a dead weight.

The attitude toward those sainted persons is summed up thusly: “I don’t know how they do it; I wouldn’t be able to. There has to be a special place in heaven reserved for them.”

It is such a drag on a person’s life to deal with any person with a disability, any person who does so must have supernatural patience. Love is not an issue, of course; love requires more than one person.

Parents of children with autism, muscular dystrophy, Down’s syndrome, and others. Anything that requires assistive equipment any more complicated than a pair of glasses, and anything that renders a child unable to speak clearly and “articulately” in their region’s preferred language. It is not limited to these, but these are conditions that earn a parent a sympathetic eye.

Do not leave these assumptions unquestioned. Sarah Palin’s refusal to terminate her Down’s child will be invoked as a shorthand for her upstanding moral character. Don’t buy it. She did not do so out of respect for the disabled as equal persons of equal worth. She did so out of allegiance to a philosophy that would deny women the ability to make their own choice to carry to term and keep a child with a disability or to safely terminate a pregnancy likely to result in disability. On that note, even those in feminist circles will frame Palin’s circumstance pretty much exclusively as a question of awoman’srighttochoose. DON’T BUY IT. For better or worse, with a few but only a few exceptions, the only time disability issues are picked up on mainstream feminism’s radar screen is when it involves a disabled woman who becomes pregnant in questionable circumstances. Sometimes it is a case of rape, and sometimes it is a case of upper-class white abled feminists plowing right past said woman’s agency to insist she must have been raped and/or coerced because of her “diminished mental capacity” (whether or not her disability is mental in nature, and even then, whether or not her “capacity” is “diminished,” and even then, whether it has any bearing whatsoever on her right to control the direction of her own life). DON’T BUY THAT EITHER. Women are damn well entitled to a well-defended and highly-accessible right to reproductive justice. That includes disabled women, and that includes any woman’s right to choose to continue or cease a pregnancy likely to result in a disabled child, depending on that woman’s own personal considerations. THAT IS NOT THE ONLY ISSUE AT STAKE, and GODDAMMIT, THAT IS NOT THE MOST IMPORTANT ISSUE! Why the HELL is a woman who does not faint at the idea of a disabled child someone who deserves a Goddamn crumb of praise?

It’s like people see the ideas “disabled child” “pregnancy” “conservative politician” together and obviously the issue at hand is every woman’s right to be free of a dependent with any sort of “defect.” Just like every woman’s right to kill a mosquito that lands on her arm.

Don’t let this opportunity pass. “Liberal” men and “feminist” women, consider your privileged asses called out. You should know better. And I, we, any person with a shred of human decency, should expect better of you.

***

I was enjoying some much needed heat therapy and electrical stim at therapy today, lying on my back on the you-call-this-padded? exam table in a room of about eight others, all of us closed off individually behind hospital curtains. Usually I am one of two or three people in the room, but I came at a busy time today and that was the last table.

My physical therapy office shares space with an acupuncture/holistic therapy group. And, um, they had a rather loud patient in the curtain-cube across from mine. She was screaming at length about how her doctor put her on some medication for an infection but she’s going to taper herself off of it, medication don’t do nuthin, etc. etc.

When I laughed and told my therapist — quietly — “I think most people would be scared when they saw my medicine spinner” — she reacted negatively to my twelve-pills-a-day and Ol’ Screamer caught wind and bellowed louder and more defensively. THATSTUFFISNOGOODFORYOUDON’TYOUKNOW and so on.

I’m kinna’ tired of it. My therapist has been amazing but I was let down a little by her reaction. Look, I know I pretty much funnel 75% of my paycheck to Big Pharma. I know most people are only accustomed to the occasional Z-Pack. But most people don’t live every day in my body. And damn it all, I know the difference between my-body-now and my-body-then. I took about a third of the medication I currently take a couple years ago, and I couldn’t work any more than 8-10 hours a week, tops. Then when I got on my current regimen, I was able to up that to 20-30 hours in a retail environment. And back when I took none of it? Oh yeah, that time in my life, you know, the time I almost failed out of high school and had to drop out of college (whether fifteen units or five) twice, all within a span of 18 months?

Yeahhh, that.

I’m sick of placating. So, to those people, kindly accept my Gayest Look.

This public service announcement was brought to you by … oh hell, I’m going to bed.

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…

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.

This shit makes me blood boil.

This morning I read (rather, viewed) Lauredhel’s documenting of the bullshit uni discrepancies for the Olympic athletes. Remember, these are athletes; there are surely performance advantages to skin-tight Lycra vs. baggy poly or vice-versa depending on the sport, but why then are women always mandated the Lycra and covering as little skin as possible (yes, this is in the rules) and men sometimes skintight, sometimes baggy, but always covering a modest amount and always far more skin than their counterpart women’s unis?

On that note, I was wandering around our discount store today after a job interview, grabbing some band-aids and bathroom products and a few more Fuji apples (divine!). I meandered by the sport care section, looking to replace my late shower chair and see if there was any sort of wrap to keep a heat pad on my back. I noted the name of the manufacturer of the products available there, and came home to print out a few product pages to discuss with my physical therapist.

While browsing the site, I curiously clicked on the “ Life Care™ for Her” link. This is the page that comes up:

What is wrong with this picture?

Oh yeah. The sexy vixen with smoky eyes trying to seduce you to come…tighten her knee brace.

WTF?

You’ll notice the pictures on the packaging, of course, includes more pictures of hairless poreless fatless pigmentless sssssexy chick. And they helpfully spotlight them in the middle of the page!

Mmmmm, check out my soft, silky, supple, b……races.
Why don’t you come support me, baby?

Targeted Support for Today’s Active Women. “Active,” huh! Smirk, wink, amirite amirite

I included the full first screen of the page to give a context as to the site it’s on. This is sports medicine. It’s hot/cold gel packs and creams, and tapes and wraps and braces. By contrast, here’s another picture of a woman on the site:

She’s wearing skin-tight midriff-bearing clothes, but at least she’s wearing any at all — and she’s up and active and at least her awkward position is actually doing something.

And here’s another page for one of their product series (as opposed to just a category of products). Notice that all but one of the pictures have been converted to grayscale and digitally edited to look like an understated grey model.

I don’t see why the same approach couldn’t have been taken with the women’s series of products — which appear to be designed so as to be better marketed, not so as to be a better product for women’s particular needs. They say they are thinner and sleeker so as to be less conspicuous under clothing, an advantage that I see no reason to be confined to women. Surely men in business suits would benefit from a non-bulky ankle brace too?

The message this sends to viewers is, simply put, even when you are injured or sick, you must always be sexy. What it tells women is that they need to shave their entire leg before they put on that knee brace. And white women should preferably tan, without tan lines. WOC need not apply, of course. Nor fat women.

There is quite simply no time that we, as women, are permitted to escape from the exacting standards set for us to be on-the-ready for any male passersby. Not when we are sick, not when we are injured, not when we are active or participating in sport, not even when we are altogether disabled. We must always be aware of our appearance, not in terms of presentability, but in terms of sexual attractiveness to a hypothetical mainstream white heterosexual male.

Even when no one can see us at all.

Chew on that for awhile.

Extra credit: The store had a different women’s-series set of products: they were “for her” and their distinguishing characteristic was that they were sized larger for a “plus-size” body. Apparently only women get fat.

Shame and disappointment.

I never took seriously the cries that either Obama or Clinton were narcissistically selfish because they were so extremely unelectable and their nomination (or attempt at) would ruin the party, etc.

But, truly, if John Edwards had been nominated, we would be crushed right now. Which goes to show the folly in the supposed safety in picking a white Southern heteronormative male with a picture-perfect family.

I am glad he didn’t win, despite my support for him throughout his entire run. But, I think, I am still glad that he made this run. He set the standard in health care, putting necessary pressure on Obama’s sadly insufficient plan, and possibly even pushing Clinton to be bolder and wider-reaching with her health care plan than she otherwise might have been. He hit hard without being offensively antagonistic, pushing a refreshing populist progressive platform so hard that he cemented its place in the party’s platform itself for this election round.

And, I think, that influence is underappreciated. I don’t think we would be nearly so successful were it not for his campaign. A great many voters are thirsty for progressive policy, eager to see how different our economy and our society will be with a responsible, liberal value system driving our federal government.

As an aside, isn’t it weird that all this has come down, from Clinton to Edwards, and we still haven’t had the convention yet? Maybe that’s my youth talking; I wasn’t nearly this involved in the political process four years ago.

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.

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.

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.)

Ezra brings up an issue that continues to lie dormant.

Insurers charge women more than they charge men… studies show the effect is all the more pronounced when you’re dealing with health savings accounts and other forms of high-deductible coverage. A Harvard study from a year or so back ran the numbers and found that men under 45 racked up about $500 in yearly, out-of-pocket costs, while women spent closer to $1,200. Dr. Steffie Woolhandler, the lead author of the study, summed up the findings starkly. “When an employer switches all his employees into a consumer-driven health plan, it’s the same as giving all the women a $1,000 pay cut, on average, because women on average have $1,000 more in health costs than men.”

Here’s why: For most of their lives, men and women use health care very differently. Men seek episodic care: I sawed off my thumb, fell off a mountain, tried to stop an SUV with my Civic. Contact with the health system is relatively rare, and most everything is covered by insurance. Conversely, women seek a lot of routine care. Check-ups, pap-smears, reproductive health care, etc. The expenses are small, but they’re regular. So when you move towards health coverage where small, regular expenses come out of pocket, you’re erecting financial barriers to the type of care sought by women.

It’s also a good object lesson as to the folly of HSAs. The type of care that HSAs put a higher price tag on, and thus discourage, are small and discrete interactions with the health system. So they disadvantage mammograms and pap smears, but leave lumbar surgeries and angioplasties untouched. Anyone want to guess which category accounts for the majority of our health spending? Anyone want to guess which type of care studies suggest we discourage, and which type of care studies suggest we make more broadly accessible?

Why is this not on the front page of every newspaper in the country right now? On the screen of every cable news watching citizen?

What do you think the effect of this is on single mothers? What do you think the effect of this is on poor women? What do you think the effect of this is on disabled women?

How many people are unnecessarily unemployed because the health care that would allow them to work is denied them? How many people end up in the ER in the middle of the night because they put off routine care for so long, because it was money they didn’t have? Money that could instead go toward their education? Money that could instead go toward their children’s school activities?

How many children lose mothers, husbands wives, parents daughters, when one more woman ends up with cervical cancer because she didn’t have the time or money to spare?

Do we really think we can patch things over by throwing a couple dollars at the Komen foundation and calling it a day?

Think about your own mother. Your sister. Your daughter. Your partner, your lover, your best friend. Do you really want to just let this go because “that’s just how things are”?

I am tagging this one under “privilege” to remind you, the reader, if you are able-bodied and able-minded, that I, the bitch, the cripple, am subsidizing your health care. And that woman in the Section 8 housing who just got evicted because of the money she’s spent getting run around the ringer about those abnormal cells on her Pap test? She is subsidizing the yearly checkup you don’t even bother to get most of the time. And when you go home with your Z-Pack, knowing that you are going to be free and clear after seven days and a $10 copay, know that the money to pay for that came directly out of the pocket of that woman and her two infant children. And I hope you’ll find that redistribution worth it when she dies at 42 of cancer that could have been prevented.

Welfare queens? Taxpayer dollars? Hard-earned money? I don’t want to hear it. Fuck you.

My pharmacy called me to tell me that the prescription refill I put in for last night is too soon, so I should wait until tomorrow to come pick it up.

Normally when I get a message to call them about something, it’s “You don’t have any refills left” or “Your doctor won’t refill it until you’re seen” or “Your insurance says you’re over your quantity limit” or my favorite — and it happened multiple times — “Your insurance says you’re in an assisted living facility, so they won’t fill it.” (”Um, I’m sitting in my apartment right now.”)

Did something go wrong? Did I die in my sleep last night? Or fall through a cosmic portal into an alternate dimension where the second law of thermodynamics actually states that the universe should work toward harmony and order at all times?

Much like if your children are being quiet, something bad is happening, if my medical care comes easily, something must be horribly wrong…

I weighed in at 164 at the doctor’s office on Friday. That is 0.1 BMI away from overweight! Whee!

But I also feel smaller. Maybe the Lupron is helping reduce the bloat in the tummy? There is definitely a difference looking in the mirror. Less to squish. Which is rather a surprise considering the previous immutability of my weight.

It is very obvious my GP does not like that I am on the Lupron, not at all. “It’s not like taking an Advil,” he says. That’s not news to me, though. When I told Matthew same, he remarked: “Then what are you supposed to do? At least this is helping reduce the stuff that is causing your pain.” Which is approximately how I feel about it. I know it’s a serious treatment. (GP does think the dizziness and spasms are probably attributable to it, since nothing else came up on x-ray and bloodwork.) But it will be an improvement over the status quo. A lot of the anti-medicine-type folks fail to understand that concept. GP has been reasonable so far, so his views on this matter were somewhat of a surprise.

Halfway through the Lupron, at this point, so long as I don’t have to repeat the therapy at the end. After that first monthish, my symptoms were greatly reduced. Including the dizziness and spasming. They aren’t gone altogether, but they’ve been largely stifled.

He is sending me to physical therapy for the back pain. Welcome development, that. Especially as I am applying around for new jobs, and kind of hoping for a clerical job with the state. I’m in contact with the local vocational rehab services as well. I mean, I sit on my ass all day anyway, but if I am working full time I am going to need some help adjusting to sitting on my ass in a place without access to all the accommodations I have built for myself at home.

I am still adjusting to the idea of working full-time. I’m not totally sure I can do it, but on the other hand, I don’t really have much reason to doubt it either. Especially considering I was unable to sustain any sort of work-for-pay before my current medicine regimen. I am the same person, with the same medical conditions. All that has changed is my treatment.

I don’t think I’ve ever written here about the catch-22 I faced there. Without that treatment, I was disabled, unable to work at all. When I was on disability, I qualified for Medicare, which would pay for that treatment. But with that treatment, I was (tentatively) able to earn SGA. Which would disqualify me from those disability payments. Which would mean I’d lose my Medicare. Which would mean I no longer had the treatment that enabled me to work.

Fortunately they do actually continue at least Medicaid coverage for workers with disabilities, at least in Pennsylvania, but only temporarily. After that, you’re at the mercy of your employer.

The fight for universal health care is, then, quite intimate for me.

Over and out.

Elizabeth Edwards is, by far, my favorite public figure. I see a lot of myself in her, and I see a lot of what I wish I could be in her. There’s been no shortage of times I’ve wished that she would get involved in politics, not only her husband John.

All of which is to introduce this video of her throwing hardball at John McCain’s so-called health care plan, pointing out that even John McCain would be refused health care under the plan he proposes:

The phrase “pet peeve” is not strong enough to describe my feelings toward the universal policy of preexisting condition exclusions. I consider them cruel and immoral. If only one thing could be changed about our health care system in America, I’d criminalize this sort of policy. Consider it like loaning money only to people who don’t need it: so no mortgages, no car financing, no student loans. Nothing. The only way to qualify for a loan is if you can prove that you have no reason to need the money at all. Doesn’t that sound, well, fucked up? That’s because it damn well is.

Not surprised that the host of the show tried as hard as she could to get some sort of salacity out of Edwards. “Did you have a fight?” Good God, these people belong back on the schoolyard, if only for the safety of the rest of society. Elizabeth, as always, stays out of it, ever classy.

What does it say about my experiences with the healthcare industry that when I see this:

Why do we want to know more about you?

In order to personalize the site to you, we need to know certain things about you. For instance:

• We need to know your age and gender to remind you of the check-ups you need.
• We’ve got a great pregnancy program so if you’re pregnant, tell us and we’ll help guide you through a healthy pregnancy.
• Your email and zip code helps validate that you signed up for the site and no one at our organization did it for you.
• And so on..

I read this:

Why do we want to know more about you?

In order to increase our profit margins, we need to know certain things about you. For instance:

• We need to know your age and gender so that we can “adjust” your premium and care accordingly.
• We’ve got a great pregnancy program so if you’re pregnant, tell us so that your employer has the option to discriminate against you based on it.
• Your email and zip code helps us earn money by selling it off to spammers, both “legitimate” and il-.
• And so on..

Cynical and unfair? Yes. But when you’ve lived the life I’ve lived, in the body I’ve lived, with the experiences I’ve lived, you’ll understand why I’m not so eager to provide my employers’ insurance “discount” company* with any of this information.

*I’m required to have this insurance in order to be listed on my husband’s insurance, and I have to have a denial from my employers’ insurance before his employers’ insurance will consider any claim at all. Which is kind of easy, considering the former doesn’t cover anything anyway. Throw soon-to-expire Medicare and on-going tertiary Medical Assistance for Workers with Disabilities into the mix, and I’ve got a headache-inducing full-time job on my hands juggling all of the above.