I would start a blog dedicated to cataloguing and explaining in accessible terms all of the research, news and developments related to fibromyalgia, hoping to create a slightly more informed populace.
It's been long established, unfortunately, that my energy levels are in deficit.
I just started a 25-hour-a-week job at Ritz Camera and have been pretty busy, thus the absence, so I'll go ahead and let WebMD do the takedown for me.
There's been a bit of fuss over whether it is acceptable to consider political differences when deciding who to date (or fuck, or marry).
I am a bleeding heart, far-left liberal, sometimes-radical-leaning feminist (hairy legs and all), Democratic-primary-voting woman who believes politics matter. My husband is a self-described libertarian—yeah, the sort who's too cool to identify with the conservative movement, although he has definite conservative leanings—attended a private conservative Christian college, leans far relativist history geek who doesn't keep up much with politics because he doesn't think they make much of a difference.
We get along just fine, and I admire the hell out of him. Why?
Our value systems match up. Those values may translate into somewhat different beliefs, but I know that in the end his beliefs are coming from a good place. I think he'd be likely to identify as feminist (or feminist supporting, if you prefer) if it weren't for all the negative cultural trappings around the term—based on his beliefs and his actions.
He treats people with respect and courtesy. He has no desire to interfere in the rights of others to live their lives as they wish. He stays far away from conversations about Those People (teh gays, teh Muslims, teh blacks or others). And, again, he regards others with respect, a true, deep respect for who they are and what they need. I can sense the difference between "I'll make nice to your face, but I still have a base disdain for you" prevalent on the right and "You have a right to define yourself on your own terms and fight for basic equality and respect, and I support you in that fight" -- and his is definitely the latter.*
It is entirely possible to live with political differences in intimate relationships.
However, our politics rise out of our value systems, and when you get down to it, you can not live with someone who has a value system that is incompatible with your own.
*(This is not to say he does not benefit from privilege or hold beliefs I believe are wrong -- or that I hold beliefs he believes are wrong. We can have a hearty debate, for sure. But I believe that in the end, in our goals and our basic values, he and I are on the same page.)
How many of these have you seen? A celebrity of a healthy weight seems to lose all contact with reality and goes on an insane diet/exercise/drug program and loses a ton of weight.
Typical reactions: "But she was so HAWT before! Now she looks disgusting! Why did she do that?"
Now let's take a slightly different perspective. Compare:
These are before and after shots from various retouching studios.
How many of the same men (and many women) who react with disgust at the "after" picture of Amy Winehouse will gawk or drool when presented with the "after" pictures of the second set—whether on (or in) a magazine, poster, billboard, advertisement or otherwise?
Bombarded with images like these, is it any wonder that so many women follow Amy's path?
Via Shakes.
Also stolen from the journal.
I know I keep posting on the same boring subjects, but this is really a major adjustment period in my life, and I can't figure things out if I don't write them down.
I have in mind now that I should not take that half a painkiller when I'm feeling pretty achey, but not in terrible crushing pain, and wanting to get up and do something.
Problems.
I can't quite figure this out, whether (in)ability and (lack of) pain are two separate things, or the same thing expressed different ways, and if they are separate, how do they play into my everyday life? What makes me do, what makes me feel what? I feel like they are separate factors but I can't identify how they work, how they affect me, what the causes are of my state at any given moment in time.
Twenty one years of this condition and I still have no idea WTF is going on in my body.
It doesn't help, either, to follow the line of logic above and decide, OK, so don't take the painkiller for ability reasons, take it for reasons of pain. But that doesn't help me. I still sit here, still unable, and still in pain. Sometimes I can push through the pain when I have a higher level of ability (OK, now I think I am starting to "get it"...) But sometimes not. Sometimes even when I am not in that much pain, I can sense I have a lower level of ability, and so I sit.
But how do I apply this understanding? When do I reach for the pain relief? When do I force myself to get up and do? (Make no mistake, even with a higher level of ability, I have to force myself to "get up and do." Psychological inhibitions, fear of the pain I'll bring on myself by possibly overworking myself, especially because I don't have a strong, logical, reason-based handle on when I would be overworking myself.)
How do I explain this to someone who is wanting to understand why I decline their invitation this time (whether to coffee or to do some work, whether that is an explicit invitation or an unstated, understated, society-level expectation), even though I seem relatively pain free?
Does anyone identify with this? Can anyone help me pick this apart, piece it back together and understand it further?
I have to be honest here. I find it both funny and aggravating when folks like Kevin Drum and Matt Yglesias complain about their health care woes. They are reminding the world that the U.S. could stand a lot of improvement and the right wing's "hip replacement! wait times, O NOES!" scare tactics are ridiculous, but it boggles the mind how out of touch even the liberal dudes are when it comes to the impossibility of navigating this health care system. They are incredibly privileged that their only worry is waiting a few weeks for their annual physical. They don't go without care that is necessary to their health, or face significant obstacles to obtaining it. And yet it is a surprise to them that their health care is not simply dropped in their laps with no effort on their parts.
Health is a struggle for me. A daily battle. A battle with myself, against my own body, and against the world that makes it all the more difficult for me to win that fight against my own medical demons. I don't get the privilege of seeing a doctor once a year -- I have had years where I did so, but it was because I was uninsured and only had the means to save up for one doctor's visit that year, and I suffered for it the other 364 days and change, let me tell you.
Anyway, all this is to say that I'm going to make a point of including my own struggles on this blog. Not that many people will read it, but maybe some people will, and will get the idea that for the sick, health care is not an ideal, it's not academic, it's not a principle, it's not politics, it's a full time job. It's something we have to face every day if we want to face the day at all.
So with all that, here's my latest tale, stolen from my journal, about my fight with my health care provider to provide me my health care.
Let me note before this, that I have been routinely denied prescriptions since moving here PA and becoming eligible for insurance (finally); this doctor's office has been impossible to deal with, and my insurance just as much so. I've been doctor hopping my entire life, trying to find someone who is knowledgeable and respectful. I've had two doctors in my lifetime who have given that to me -- maybe three, now that I think about it (two of them gynecologists). Trust me, I have seen multitudinous more doctors than that throughout my life. It is tiring. It is aggravating. It is exhausting and painful. It really is the second shift for the sick, fighting the health care system just to get barely adequate care. I just feel like the more people who realize this, maybe the more people who will help fight to make it better.
***
Last Wednesday was the day I trekked out to McMurray for what was to be (I hope, anyway) my last ever visit to this fuckwit doctor's office. The drive itself was aggravating -- McMurray Road, a two-lane road that was quite a pleasant drive all told, is being completely repaved (Peters Township has way too much disposable income), and the workers decided to handle the traffic in the most idiotic way possible (I've seen it handled well, and this was not one of those times): let traffic back up for over a mile one way while letting one side through, then switch off. I was stuck in place, unmoving, for over 15 minutes, less than a mile away from the doctor's office at that point.
I actually called in at that point to let the front desk know I'd be a little late, and the woman was actually nice to me. It's the first time I've ever had someone at that office speak to me pleasantly, ever. Go figure.
Anyway, I got called back, sat down, and lectured on painkiller use for ten minutes by the physician's assistant.
I am, apparently, supposed to be seen before every refill. Every refill. That's every months, folks, conceivably for the rest of my life. I'm only twenty one years old. That's a lot of doctor's visits.
I made (as you'd expect) disapproving noises as she continued to talk right over me.
"We strongly frown on long term narcotic use. They're usually meant for short term..."
"I know that."
"And we don't use it for fibromyalgia. We recommend anti-inflammatories --"
"Anti-inflammatories DO NOT WORK on fibromyalgia. It is a neurological condition, a disorder of the central nervous system that amplifies pain. If you have osteoporosis and fibromyalgia, then anti-inflammatories will work because osteoporosis causes inflammation, but the only thing fibromyalgia will do is amplify that pain."
"..." [sort of stunned, doesn't know what to say]
"..."
"... [sigh] Yeah, so..."
... and she continued lecturing right over me, not listening to a word I had to say.
I was informed multiple times, just in case I wasn't already aware, that a lot of people abuse painkillers and they have to be careful. I would say "I know that" and before I could say anything else she'd keep on lecturing me in that condescending tone of voice.
I told her that two months ago, I was told I would only need to be seen every six months to continue getting my refills. (Indeed, it had been six months since I'd seen the doctor for that purpose at the time.) She said "I don't know who told you that," and that their policy was every refill.
My suspicion is that they flagged me as a potential abuser, and she was just bullshitting me. Obviously that is not their policy or else I would not have been getting my refills relatively unimpeded every month up until now. Perhaps their policy changed, but wouldn't she have said as much instead of just insisting that it is, and always has been, their policy?
So, yes. I am never going back there again. I had already decided as much when this whole fiasco began, and switched PCPs with my insurance the day I found out about all this. I have an appointment two weeks from now.
But when she pulled out the "anti-inflammatories" thing, that just sealed the deal right there. It has been at least ten years since the concept of fibromyalgia as an autoimmune, rheumatic, inflammatory disease fell out of credibility (though lamentably not popularity). TEN years. Central sensitization has been the leading theory for quite some time now. I've been up on this research since early high school. Granted, I know doctors are very busy people and they can't keep up with every single development in the field of medicine, but this is still unforgivable in my mind. I should not know more than my own doctor about my condition -- what's the point in seeing her, then? It would be understandable, perhaps, if it were year-old research. But research that has been widely circulated and accepted for over ten years?
Fuck that.
What my eye spied stopped on Route 19 headed to PetSmart for cat food?
That takes dedication like whoa.
My guess is SEX4MEBUTNOT4U didn't fit on the vanity plate.
What's this I see?
A mockery of Cymbalta's "Depression Hurts" campaign?
Guess what, fuckers, it does.
It might be funny if, you know, it was an actual satire site. But no, Ford just wants to sell their new '08 Escape.
Fuck that.
Can I call it my alma mater when I only earned 15 units (over two long years) and never graduated?
I picked it blind, sort of; I was looking at art programs and affordability, and not much besides that.
But they won the 2004 College World Series, which was exciting. They focus on their baseball (which has long been my favorite sport)
And unbeknownst to me, they were developing a fibromyalgia center at the Kinesiology Department, with the participation of none other than Dr. Stuart Silverman, my mother's rheumatologist and my old rheumatologist's office partner, one of the most world-renowned doctors for the treatment of fibromyalgia, and who watched me grow up from half a decade old and up.
Which brings me to today's news:
FULLERTON — The newly opened Fibromyalgia Research and Education Center at Cal State Fullerton has received a $298,102 grant from Unihealth Foundation.
The funding will be spread over two years to provide support for the FAME Project, an acronym for Fibromyalgia Assessment, Management and Education.
The project will focus on developing and implementing a Web-based training program for health care providers on the diagnosis and management of fibromyalgia and overlapping conditions. Also, the grant will be used to increase the number of trained health care providers to treat and care for FM patients and improve delivery of care to those people.
Coincidentally, during my second year at CSUF I lived not two blocks away from the National Fibromyalgia Association's then-office on Glassell Street in Orange, California. I always intended to walk down there—what for, I don't know; to introduce myself? look at it, turn around and walk back home?—but never did.
Heads up for Cal State Fullerton. I've always been proud to have attended, and I miss it very much.
A friend of mine is starting his own blogging endeavor over at tzirean.net. He's started off with a post on FOX News' Daily Show knockoff, mockery of which I'm sure anyone who finds their way to this blog will enjoy. Check it out.
The former post was a pretty long introduction, but now I'm going to get onto what I was originally intending to talk about: this story on a study on the efficacy of Myer's cocktail on fibromyalgia.
The first red flag comes in this paragraph:
Massey chose subjects who had fibromyalgia for at least 8 years and proved to be therapy resistant, having tried antidepressants, nonsteroidal anti-inflammatory drugs, and exercise without relief.
Oops! OK, those of you who aren't familiar with fibromyalgia probably don't see the mistake there. It comes in the form of the words "nonsteroidal anti-inflammatory drugs" invoked as though it is a legitimate treatment for fibromyalgia. It's not! Not because NSAIDs are a useless treatment in general (arthritis sufferers, you can put away your weapons now) but because fibromyalgia is not an inflammatory condition. The pain has nothing to do with inflammation of the muscles or joints (well, except insofar as it will amplify that pain if you have it for some other reason) but instead with a fuxxoring of the brain's regulation of pain signals. So it's sort of a meta-level condition, if you want to think of it that way. Now, fifteen or twenty years ago the conventional wisdom was that the disorder was an inflammatory, auto-immune, rheumatic condition (thus why the default specialist for a fibromyalgia sufferer is a rheumatologist, and why we sit in the lobby with arthritis, osteoporosis and gout sufferers) but that's been pretty much dismissed by now. Unfortunately, there are a lot of medical professionals who are fifteen or twenty years behind on the research, and so they continue to propagate this myth.
So of course NSAIDs didn't work on these patients. Because NSAIDs don't work on fibromyalgia. That's sort of a meaningless condition to require of your patients if you're looking for someone who hasn't responded to typical therapies.
The rest of that quote is problematic, too. Antidepressants also don't do a whole lot for fibromyalgia pain. It does help you regulate serotonin (sort of the bouncer for your brain, it helps block the "bad" signals, so when you have less of it, more "bad" signals get through) but because serotonin plays only a small role in the overall problem with fibromyalgia, it isn't really terribly effective. Now, a lot of fibro-ites will tell you that it makes them not care about their pain, but the pain's still there, and that's a pretty accurate way of putting it.
Also, while exercise is vital to managing fibromyalgia pain (the weaker you are, the more you will hurt; carefully managed physical activity can help strengthen your body and thus help improve your physical state) exercise alone is not going to do a whole lot, except make you sore. It's sort of like the studies that find a combination approach is best for depression or anxiety: medication alone just masks the problem, but it's often hard to really make progress with therapy or CBT if you don't have the chemical regulation straight. Much the same way, you aren't going to make a lot of progress exercising if you don't have some sort of pain relief helping you do it.
So basically, of course these patients didn't respond to these treatments. Because these treatments don't really do much for fibromyalgia pain in general. If you were going to conduct more of an intellectually honest trial, you'd look for patients who didn't respond to the treatments that actually work. Duloxetine and pregabalin are the two biggies, but I can excuse a lack of knowledge about them since they're really new. But gabapentin has been around for a long ass time so you (a medical professional professing some sort of special knowledge in the area) have no excuse for not knowing about it. Same with stuff like cyclobenzaprine or even hydrocodone (which is a tricky treatment to manage given the probability of developing dependence, but it works). There is no way they can excuse ignoring these treatments and concentrating on the ones that have been proven not to work.
Moving on:
Seven subjects were given the modified Myers' formula of intravenous nutrient therapy once each week for a total of 8 weeks. The subjects were monitored weekly by measures of pain, fatigue, and activities of daily living. All seven subjects reported improvement in all three measures.
Within two days of receiving the modified Myer’s cocktail, the subjects all reported increased energy, with no side effects. There was an overall 60% reduction of pain and an 80% reduction of fatigue, though the reduction was not lasting.
Problem here. One: There were only seven subjects. That can be looked past, as there has been pretty important research with similarly small sample sizes that have been vindicated in the end. But then we get on to two: there is no control group. I'm speaking as a layperson here, but really, as far as I'm concerned, if your clinical study isn't double-blind, it's worthless. Why? We get right back to that placebo effect again.
And doesn't it look like that's exactly what's happening here? Within two days the patients reported incredible improvement. By the time the study was over, they were back to normal. That's how it goes with these treatments. You take them for awhile, you really want them to work because hey, you would like to be able to get on with your life, and at first you're thinking, hey! maybe this is working! as you identify this and that little "improvement" during your daily life—ups on the pain and fatigue roller coaster that really may just have been what you normally experience day-to-day anyway, but weren't really paying attention to before—or maybe just your improved disposition due to your investment in the new treatment is affecting your pain levels overall; mood certainly influences one's physical state (although please, let's not take that to the BS level of "then it must all be in your head!" science is not with you on that count, my friend). But then as time goes on, you stop looking for improvements and concentrating on whether or not the treatment is working and get on with your daily life, and you start to notice that you can't find any real difference. And then you get tired of taking the pill every morning (or whatever the treatment is) and stop, and forget about it. Chances are, you've been through dozens of these treatments before, and they didn't work either. And you become more fatigued with them over time. But you don't really care enough to report back and tell the makers, or the readers of the reviews, that it didn't work. And so it goes.
As I've said, this doesn't apply across the entire alternative spectrum. Some treatments have been shown to work (acupuncture, for example, has been shown to be effective in some trials, although the results there are equivocal because there have also been studies that show it not to be effective over a "sham" [control] treatment). But so many are never held up to the light for a closer look, and they need to be—for the good of those living with the condition, who want to see real, effective treatments found, to reduce our suffering.
The thing about fibromyalgia is that not all that long ago, it was a synonym for "hypochondria"—and that holds true in the minds of many today. In the '90s it was known as the "wastebasket diagnosis," because anyone who had pain that couldn't be explained by existing medical conditions got that diagnosis dumped off on them and sent off for some other doctor to deal with, whiny old women that they were. (There is an established diagnostic criteria for fibromyalgia, but not all doctors are trained in how to apply it correctly, and that doesn't even really matter when they don't take the diagnosis seriously anyway.)
Given that the medical establishment hasn't treated us terribly well over the years and the existing pharmaceutical treatments didn't really work, a lot of fibromyalgics turned to alternative therapies. The thing about the alternative world is that it's very warm and welcoming, as compared to the cold and uncaring medical establishment that really just gave you the diagnosis so you'd quit bitching at them already. So it's more appealing to begin with. A lot of doctors, other medical professionals, amateurs and opportunists saw a market waiting to be exploited, and exploit it they did. Said opportunists often operate clinics where the patients are "treated as a whole," and that's actually a pretty accurate description. The patients are treated with respect. There is a distinct sense that your complaints are being taken seriously—your words are believed the minute they slip off your tongue; you aren't approached critically and questioningly like in the typical doctor's office. You aren't being treated like a guinea pig, but more like a child who's just skinned his knee—they give you empathy, which is something you don't encounter in a typical medical environment.
And so the patient looks around and decides: This place rocks. And now they are invested in the treatment they're going to be offered. They want it to work. And I'm sure those of us familiar with the placebo effect can deduce the rest of the story here.
I want to throw in a disclaimer now, because I know I'm treating these things—hell, "skeptically" would be too kind—and I know that not all alternative treatments are bunk. What I'm addressing isn't the "alternative" world in general, but instead the "alternative" world that consists of opportunists and scam artists. Actually, no, that's too cynical. A lot of these people really believe in their treatment approach. They really believe they're making a difference in the lives of those suffering. And in a fashion, they are. But when held up to the light for inspection, these treatments usually fall apart.
A classic example is Dr. Paul St. Armand, inventor of the guaifenesin protocol (basically, cough syrup). I can't find the webpage now (argh!) but he used to have a personal, geocities-esque page where he claimed that the guai protocol would not just cure your fibromyalgia: it would reverse it. And he meant that in the most literal sense of the word. You would feel worse before you felt better, he said, and that's because staying on the guai protocol is like watching your disease on tape, on rewind. You'd go through the same ups and downs, the same flares and remissions, that you've already gone through in your lifetime. BUT SPED UP!
Yes, he seriously claimed this (he used the "tape on rewind" metaphor specifically). No, I am not making this up or summarizing. He quite explicitly explained this very concept on his personal webpage.
Dr. St. Armand's protocol has been held up to scientific scrutiny in the past, and guess what? It didn't check out. The study found no statistical significance over the control (placebo) treatment. Oops. A year or so after this disappointment, Dr. St. Armand came back with a rationalization for his failure. See, they didn't control the diet of the patients while they were participating in the trial. Apparently the presence of salicyclates in the body can fuxxor with the ability of guai to, you know, work. Salicyclates that are present in pretty much everything, from your toothpaste to the grass outside your front door (and this doesn't include every food you have to give up, like a diet on steroids). You have to completely eliminate salicyclates from your body before guai will work. That's an incredible task, as I'm sure you can imagine.
I actually give him a little slack on this, because it could be a fair explanation for the study's failure. But then I'm also inclined to laugh it off because of Dr. St. Armand's theory on why guai works. See, according to him, fibromyalgia is phosphate buildup in the muscles. Apparently you can feel these buildups on palpation. Now, this is pretty clearly bullshit if you have kept up with the fibromyalgia research at all. The leading explanation for fibromyalgia is "central sensitization" (recommended read! a good overview of the syndrome in general), dysregulation in the central nervous system, basically a whole bunch of factors (higher levels of substance P, less blood flow to the thalamus region of the brain, lower levels of serotonin) that come together and result in amplification of pain signals in the brain. You can see these two theories don't really match up. And if I read the second paragraph under "Role of Peripheral Tissues" in this review of the inner workings of fibromyalgia (the whole thing is a hell of a read, but worth it for those so inclined) correctly, his claim turns out to be bunk.
Thing is, Dr. St. Armand is incredibly popular. I'd almost call his followers a cult, but I don't really know if I'd go that far.
Anyway, that's just one good example of how things go. You'll find a lot of nutritional supplements and the like claiming to be able to "cure" fibromyalgia, but of course, anything that claims to be able to "cure" a condition is most likely a scam.
This post was a pretty long introduction to an issue that's been a focus of mine for a long time, and may become a regular series here. If you're ready for a takedown of a specific treatment, read on....
Buddy has a schedule.
Early morning (when my husband wakes up to get ready for work): Out and about, affectionate but jumpy.
Mid/late morning (after I wake up): Out and about, begging for attention, very playful, very lovey.
Early afternoon: Wind down. Laze around.
Mid/late afternoon, early evening (from just before husband comes home to after dinner): Hide under the couch.
Evening: Out and about, aloof, lazy.
Nighttime: Who knows. Probably conquering some far-away country without our knowledge. Tsk tsk. He does stay by the bedside while I fall asleep, though.*
Anytime anything scary happens (which, for Buddy, is just about everything) he hides under the couch.
In the past few days he has eschewed this schedule and stayed under the couch all day. I saw him for probably twenty minutes total yesterday. This scares me, because Buddy is FeLV-positive (I shall have to relate this story to you at some later date) and I don't know if he's sick -- feeling yucky -- or what's going on. (Poor guy moans and stretches in his sleep the same way I do... I know we probably understand each other on the pain.)
Anyway, all this is to say I had to drag him out from under the couch to get these pictures, so you'd better enjoy them. Or something.
this is bullshit.
The doctor refused any hold-over pills until I'm seen. Their earliest appointment is next Wednesday the 8th. I've still only got three pills to hold me over in the intervening week. They won't provide any explanation until I'm seen.
In the meantime, I'm going back into "OK, you're in a lot of pain but you've gotta push through" mode — a mode I haven't allowed myself to enter for over a year because it leads to pretty dangerous places. But I don't have any choice.
And it sucks. I can tell you. I had to hold back tears trying to gently wash my body in the shower yesterday, because it hurt in my upper arm so much to push the bath puff around on my skin. Just that very small exertion, it hurt so much. I wouldn't have been able to take that shower without my shower chair, either (that thing is a lifesaver). Lifting my arms over my head long enough for shampooing and conditioning? Forget it. And I need to try to keep my hair as un-greasy as possible for as long as possible because I won't be able to shower more than one more time until this prescription gets refilled.
I had a further rant here, but I'll spare you. Suffice to say, I'm uncomfortable and unhappy.
The lefty blogosphere is having fun taking shots at Jonah Goldberg's latest LA Times editorial:
So, maybe, just maybe, we have our priorities wrong. Perhaps cheapening the vote by requiring little more than an active pulse (Chicago famously waives this rule) has turned it into something many people don't value. Maybe the emphasis on getting more people to vote has dumbed-down our democracy by pushing participation onto people uninterested in such things. Maybe our society would be healthier if politicians aimed higher than the lowest common denominator. Maybe the opinions of people who don't know the first thing about how our system works aren't the folks who should be driving our politics, just as people who don't know how to drive shouldn't have a driver's license.
Instead of making it easier to vote, maybe we should be making it harder. Why not test people about the basic functions of government? Immigrants have to pass a test to vote; why not all citizens?
Perhaps our society would be healthier if we required voters to be more informed? Perhaps there would be less bickering, less divisive sniping, less polarization, less partisan fighting?
What was that again? Oh yeah. High information voters are more partisan, not less:
Voters aren't stupid. They're just much more committed to political parties and candidates than they are to issues. And we're not talking about the faceless rubes in the hinterlands. The effects of partisan bias actually become stronger as a voter's level of political information rises...
So much for that.
Annaham linked to her post on the connection between disability and the fat acceptance movement a little while back, and it's a good read. What I have to say isn't a direct response so much as a riff off the connection she brings up.
Consider, again, the phenomenon of invisible illness and the response of the general public to the knowledge that some acquaintance of theirs is disabled: a good many will accept it and offer their sympathies, and a good many will reject it (or at least be doubtful) and question the diagnosis. They know better, that person has to be faking it (or it's all in their head), it can't be true. They're just lazy/freeloading/don't want to work/welfare culture/etc. Even if these criticisms don't make it off their tongues, they tumble around in their heads.
And those of us with invisible illnesses will, occasionally, have the good fortune of being able to observe these people voicing these thoughts to people they consider confidants. People who, they think, don't suffer from and/or have close connection to someone with said illness. People who they think share their way of thinking. And usually, we'll shut up and carry the knowledge with us that anybody who's offering generic sympathies to our faces could be sneering at us behind our backs.
It has been my experience, being privy to some of these conversations (including my own brother's admonitions to my fat and physically disabled mother), that the larger one's waist size, the less likely people are to trust that they really do suffer whatever condition they claim to suffer.
Folks from the fat acceptance movement will surely be familiar with the underlying attitude. It's a lack of self-control, or a reckless disregard for one's health (rather, for societal expectations, but no one will outright say that) or an overarching irresponsibility. It's a fundamental immorality that makes you fat, they say (though rarely in those words).
They see a connection here. If someone is too lazy to "just" spend an hour at the gym every day and deny themselves any and all pleasure in their diet, then—[insert forehead smack]—of course they'll be too lazy to get off their ass and get a paying job! Or maybe it's the other way around. Anyway. They take away from my viewing pleasure as I move through the world and then they take away my hard-earned tax money! Damn freeloaders!
Indeed, fat people probably experience a declining lack of trust in their own description of their experiences the less trim they are. And I'm sure this whole deal is compounded further for mental illness.
It just struck me as I was rereading Annaham's post. It's damaging and frustrating for fat folks and the disabled both, and difficult to combat at that—especially if you try to speak up, given that the original speaker just spent the first half of the conversation discrediting the opinion and experiences of you or anyone like you. It leaves one, in the end, feeling very small and helpless. Which is something both groups feel often enough already.
Beyond awesome:
Thanks to Annaham.
I'll note that "Have you tried XYZ? My mother-in-law's second cousin's neighbor tried it and was like totally cured!" (usually a dietary supplement or one of the many other placebo treatments packaged and marketed to the suffering—and this is not meant as a criticism of alternative therapy in general, because some of it has proven actually effective) is another way to get me pissy rather quick. It's hard to let these people down without using the word "bullshit," which they're probably not going to take well to, and after all, they are well-meaning. But well-meaning does not forgive all wrongs.
Let's make things simple. Anyone claiming to be able to cure you? Is probably scamming you. In fact I'm completely confident I could remove the word "probably" from the preceding sentence, but I try to be generous. I know a lot of people have legitimate beefs with the medical industry and grow understandably disillusioned, but in general, if a treatment can't stand up to the scientific method we all learned in the fourth grade, it's bullshit. Sorry to be blunt, but there it is.
To take a different (and somewhat blunter) tack: I've been living with this illness my entire life. Trust me, I've had plenty of time to do the research, and I'm pretty familiar with the range of treatments available. I've tried a good many of them. And a good many of them do work on a lot of people, but didn't work on me. I've figured out, so far, what does work on me. So thank you for your suggestion, but in the future, consider allowing me the trust and respect of considering that maybe, being someone who's lived with the disease for over twenty years, I have a bit more knowledge on it than you, someone who's only connected by degree, do, and a better handle on how to deal with it. Thanks.
Wait, what?
BARKING MAD....The Nation provides a pithy explanation of why Ron Paul is a lunatic who shouldn't be allowed within a thousand yards of the White House:
Look at those policy positions! Abolish the IRS and Federal Reserve; balance the budget; go back to the gold standard; pull out of the U.N. and NATO;....fence the borders; deport illegals; stop lecturing foreign governments about human rights; let the Middle East go hang. What's not to like? [emphasis mine—aw]
Wait. Did I say The Nation? Sorry. Actually, that was John Derbyshire writing in National Review about why Ron Paul would be absolutely brilliant as president of the United States.
I thought we were supposed to be in Iraq because we cared about the plight of those poor Iraqis under Sadaam Hussein and hey, how can you call yourself a feminist if y' won't go to war f'r them oppressed wimminz o'er there?
Oh. Right.
I realized in my "Who hates to hear they look great?" post I kind of reduced eating disorders to feelings of hunger (or lack thereof). I know this is not what an eating disorder is (I'd've been more accurate, I think, to speak of body image and control issues—saying an eating disorder is about hunger might be like saying sexual assault is about attraction) and I wanted to apologize for it.
So much for those conversational landmines, eh? :)
Lauredhel for the link! Hoyden About Town is one of those blogs I've been stalking but hadn't added to the links list yet. Consider it done.
So I am on painkillers. This sort of happens when you have a chronic pain disorder.
I have to work for these painkillers. The medical industry is trying to crack down on junkies and traffickers getting ahold of these oh-so-sought-after pills. (I would gladly do without 'em if I could, personally.) No doctor wants to be the one caught up in a story as a supplier to someone who then used those drugs in some sort of illicit manner.
My old rheumatologist was Dr. Silver in Beverly Hills. His office watched me grow up. My mother went to his office partner for her specialist visits and as a single mother, she scheduled the appointments when she could take me along (it was a four hour drive—the rheumatologists in the area were seriously that behind on the times, it was worth every minute of that painful drive). He was a great doctor all around, without doubt the best I've ever been to (and I've been to plenty). He trusted me. The one time he had to bring me into his office to be able to renew my prescription, he made it clear to me (as I stuttered that I was only averaging one a day and that should hopefully go down soon and...) that he already knew I was using them responsibly and he had zero worries about me, he just had auditors on his back and had to comply with policy. Which was fine with me.
I've found the same policy now that I've moved a country away from Dr. Silver and that's fine with me. It was frustrating the first time I was refused a refill with zero notice and had to rush into the doctor's office if I wanted to be able to make it to work later that week, but I understood the impetus behind the policy.
Well, that office visit was two months ago, and I was promised that I would only need to be seen for this purpose every six months. But just today I called to check on the status of my refill—I'm down to three pills—and the pharmacy informed me that the doctor's office refused it because I needed to be seen. No further instruction.
ARGH!
This might not be so bad if I didn't have to be in contact with my doctor for damn near every prescription refill I ask for! I take five prescription medications and they all need to be refilled once a month (or thereabouts, as with the as-neededs like hydrocodone and cyclobenzaprine). Something always comes up. I have been fighting constantly with my insurance and my doctor's office ever since I became eligible for Medicare this February.
They refused my anti-anxiety medication—the medication that damn near cures my anxiety, which has caused me to become something of a hermit multiple times in my life, and which has zero side effects—because it was too new and expensive, and insisted on trying me on a couple cheaper pills first. Not only did they not work but I got to deal with boat-rocking nausea on the first and a bland depression on the second. Over the course of four or five months I was calling into the doctor's office and the insurance company constantly trying to get things sorted out.
And that's one thing you learn when you're sick. Those people? Aren't going to sort it out for you. It's a constant struggle, a constant fight. If they make a mistake they're not going to inform you of it and try to fix it, they're just going to drop the ball. And if you don't push them to do it (sometime this year, please?) they're going to drop the ball.
I am a pain in the ass to my doctor's office, I'm sure, but I sure as fuck don't want to be. I would be SO happy to be able to leave these ladies the hell alone. But I can't. Because unless I want to sit on my ass in pain for a month before they get around to writing up that letter to the insurance company, or that referral to the specialist, or faxing my refill request back to the pharmacy so I can get the medication I was already approved for, I'm going to have to call them and ask them to do it.
I ask. Politely. Always. The receptionists and nurses and other office staff snap back at me 90% of the time. I know their jobs are stressful. But damn. I am not calling in just to make your day a little bit harder. I'm calling because I have a migraine coming on and I need the painkillers before it comes full blast because then I won't be able to drive the mile to the pharmacy to pick them up and guess what, it doesn't just go away without those painkillers. I'm calling because I've been off my anti-anxiety medication for three months and I'm shaking and always fighting the impulse to bury myself in a corner and I can hardly bring myself to read my email spam because it's too much interaction for me to handle, and I really want to get back on my old one that worked now PLEASE, and to do so I need you guys to get your paperwork done.
I give them time. I can't solve the current dilemma until tomorrow morning because I waited until after business hours today, Monday, to call my pharmacy to give the doctor's office plenty of time to handle the refill request I put in last Friday. I always give them several days after they told me it would be done before calling and reminding them to take care of this paperwork or that.
I am not pushy. I am not rude. I do not ask them to fly to the moon for me. I ask them to do their job, because my quality of life depends on it.
I am tired of this dance. Tired of it. I had a bit of an angry strain in my voice when I explained the situation to my husband after hanging up with the pharmacy. He got defensive and asked me why I was getting all angry, it's no big deal. No fucking big deal? He is normally very sweet and understanding. But he can't understand everything. No one can, until they've started dealing with it themselves. And then they get very sick of it very fast.
I'm just so tired. Why can't I just get my damn prescriptions refilled on time? When I give them plenty of time? I need these medications. They're two pain medications (Lyrica, which according to a biologist friend of mine does not work on people who do not have neuropathic pain so thank you I am not making it all up, and the hydrocodone), a muscle relaxant, birth control and my anti-anxiety. I do need them, believe it or not. My getting out of bed in the morning, and hopefully doing something other than sitting on my ass all day, depends on it. It would be nice if I did not have to do the telephone-go-round every time I sent in a refill request, walked in two days later expecting it to be refilled and found out the insurance company is stalling or refused it or my doctor needs to see me or or or or or. Damn ors. I wish they would leave me alone.
This weekend, Nicholas Beaudrot on Ezra Klein linked to this eleven-year-old Atlantic article, Why Americans Hate The Media. It's a good seven pages long but Fallows effectively makes his point: the media cares more about the game of politics than the issues being batted around. They report endlessly on the political fights and how it affects the politicians' careers rather than actually examining how the issues the politicians are at least deigning to discuss will affect people on the ground.
Back here in 2007, we see the same issues playing out in real time. There's been a media fuss over the fight between Barack Obama and Hillary Clinton over remarks on the YouTube Democratic debates. We readers are only let in on the actual substance of the debate as a way to bring us up to date on who is "winning." But how does this fight tell us how each candidate will handle the presidency? What does it tell us about how our foreign policy will be conducted? How the world will change as a result of the candidate's governance? And beyond that, do the policies advocated by each candidate indicate any larger philosophies that will affect how they govern domestically? That will prove to have a real impact on the common citizen's everyday life? What would that impact be?
No: we're only told which candidate is "winning" the game.
It's left to bloggers to dissect what the game means. The media is obsessing over the trajectory of the ball—while the rest of us are trying to figure out whose window is going to get smashed.
I'm adding a link to my blogroll, but I wanted to bring attention to it here. I'm sure this site has made its rounds in the past, but I think it's an invaluable idea and I want as many women to see it as possible. That site is The Shape of a Mother—it shows what real mothers look like before, during and after pregnancy. It is definitely NSFW as they are not afraid to include nudity, but really, that's the beauty of the site. You get to see all the blemishes and imperfections un-re-touched, but at the same time you see just how wondrous they are and how beautiful the human body is. Pass it on.
Over half of the chronically ill*:
In a recent survey of 611 chronically ill individuals, done by the National Invisible Chronic Illness Awareness Week committee, 53.27% of the respondents said that the most frustrating or annoying comment people make about their illness is “But you look so good!”
“Although telling someone they look good is often seen as a compliment,” says Lisa Copen, founder of National Invisible Chronic Illness Awareness Week “it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”
Absolutely.
This is a sore spot for many with "invisible" conditions: that is, disabilities or impairments that aren't visible to the eye, that don't cause outward physical deformities or leave other telltale signs. The icon of the disabled in our society is a stick figure in a wheelchair; many healthy folks don't realize that a good many of the people milling around them, though appearing outwardly healthy, can be suffering a chronic illness that leaves them impaired or outright disabled.
These illnesses can range from diabetes to chronic fatigue syndrome to cancer to eating disorders.
And because they are invisible, they can be harder to understand. People can't see what's wrong with you, so they assume there isn't anything wrong (and we're back to that white male able-bodied heterosexual default "person" again). Even presented with evidence, many people still insist that there can't be anything really wrong. As people who have battled depression surely find familiar, you're expected to just get out and get some sun, go out with friends, or otherwise push through. Most of us, after all, have experienced periods of sadness, pain or fatigue, or times when we were excessively hard on ourselves over our physical appearance—and healthy people will be able to recover from these things and move on. They have little concept of living with these things every minute of every day for the rest of your life.
And of course, no one can be expected to fully understand. But there are certainly conversational landmines that even the most well-meaning and sympathetic person can inadvertently step on. "You look great!" is one of them. Naturally, everyone loves a compliment (although many, especially women, are trained to feel a need to debate or deny those comments so as not to seem unduly self-confident). But when these compliments are offered as a refutation to a person's complaints that they are feeling down or tired or overwhelmed, it leaves a person feeling (recall that teenage angst) that they aren't really understood.
I'll grant that I don't tend to mind these comments as much; they blow over me a bit more easily. But a couple more comments that the committee picked out tend to dig under my skin:
* “If you stopped thinking about it and went back to work…” (12.42%)
ARGH!
I've been told to "think positive" my way out of the pain countless times. I have news for these people. I thought-positived my way through my entire first nineteen years of life. Despite living with a pain processing disorder that can make carrying in a few grocery bags feel like running a marathon, I pushed my way through school on nothing but Tylenol. And then I very nearly failed out of high school because I overworked myself. I was out of school for so long that the attendance office started calling and leaving threatening messages that I needed to come back or... I would go back to school for half a day and then take off my three-days-without-a-doctor's-note just recovering from those three and a half hours sitting in a chair, not even enough mental energy left to learn: just enough to be present.
I then pushed myself through college, thinking that if I could just keep at it I could be "normal." After six weeks I had to drop all my classes; I was stuck in bed in too much pain to so much as microwave myself a Hot Pocket for lunch; I lived on a big pan of bread bedside until I was able to go back home. I was bedridden and then housebound for three months thereafter.
I learned to pace myself after that; I dropped down to twelve units when I was able to return to college, and then mid-semester had to drop half those just to be able to finish half my work in the remaining half. (One prof cut me slack and gave me an A based on the work that I did, the other didn't and gave me a C- because though I did good work, I didn't do enough work to earn the grade. I still can't decide which approach affords me more dignity.) Then I dropped down to six units the next semester and wasn't able to finish it out. The pain catches up to me.
Then, a year later, I started working. Ten hours a week. And after six months I had to quit. It was killing me. I couldn't walk when I woke in the morning; it felt like daggers shooting through the floor into my feet with the slightest of weight. I was feeling the migraines coming back, and my painkiller use was shooting upward at a rate I was decidedly not comfortable with. And my bosses were jerks to boot ("I'm fifty years old, honey, I hurt too." "...!!!! [splutter]").
No. I can't be normal. Even if I look like any other perfectly healthy twenty-one-year-old (albeit with somewhat darker circles under her somewhat baggier eyes). I have to pace myself. I can't take any more than two showers a week (and showers-per-week is a good gauge of my health at the time; when it drops below one, I know I'm in trouble). I can't get out of the house too much (the effort trying to make myself look half-presentable, even after I ditched the somewhat exacting patriarchy standards, is too much, and then I'm out of my comfort zone where I can sit, stand, lie how I need, when I need and where I need, have my medicine and a drink at hand and heating pads and pillows ever-ready). I can't take on too many out-of-house commitments, if any, and it has to be a pretty flexible definition of "commitment" to boot. My husband works full time and I not at all, and he still does half the housework. I've learned to ask for help when I'm struggling instead of stubbornly insisting I can do it myself. Etc. I've had to accept all these things. It's a heavy hit to your pride, trust me.
Which reminds me of the last one that bugs the shit out of me:
3. You're so lucky to get to stay in bed all day.
Oh, honey. I'd give anything to trade you...
*(A side note: I find it frustrating that a good chunk of stories I receive on fibromyalgia are press releases, seeking to advertise a new "alternative" treatment or, in some other way, make money off those suffering. A good chunk of the rest is business stories talking about how a condition impacts corporate profits. The remainder are slice-of-life stories that often get the facts pathetically wrong. I'd say perhaps one out of every thirty or forty stories that come my way seem to approach the condition in a respectful and accurate tone. This, despite being a press release, was one of them.)
sidebar. I've added my "Recently Shared" items from Google Reader, but because I went down my starred list to choose items to share from newest to oldest, the oldest items are being shown first. Oh well. Enjoy Mr. Crotchwatcher.
I caught Buddy drinking out of my tea this morning. The cup was almost empty, so I didn't really mind, but I moved the cup under a shelf on my desk so that he couldn't drink out of it directly.
Buddy responded by ever-so-cautiously dipping his paw into the cup, then drawing it out and licking the tea off his toes.
I couldn't manage to get him to repeat it on video, but almost...
(ETA: I managed to catch him doing it with the camera, but it's on the xD card, which I have no way of transferring files from. Dammit! It's such a cute video!)
Comments on TAPPED aren't cooperating with me, so I'll post it here.
Mark Schmitt on Edwards, poverty and race:
And yet, as I point out, he actually talks about poverty in a relatively safe way that treats it purely as an economic issue and he often (though not always) avoids the issues of race, racism and power that are inherently connected to entrenched poverty, especially urban poverty. His major speech on poverty last fall mentioned race only as something that used to be a problem, whereas now income is the problem.
Matt Yglesias, speaking once again on the subject of suburban sprawl, links to this article in the LA Times about California's attempts to balance its budget, which includes this line:
The plan passed by the Assembly cuts $124 million in welfare payments to the elderly and disabled and scales back drug treatment programs for prisoners.This seems to go on every year in California. Sacramento grows frantic to balance its budget (especially if they're passing out some of those oh-so-needed tax breaks for the wealthy) and one of the first groups to feel the effects are the elderly and disabled. The cost-of-living adjustment on SSI payments are cut, and those least able to (according to the conservative work ethic) just "work harder" to make up for the rising cost of living are left without.
Monday, December 26, 2005
A government for the people…
— Amanda @ 07:16 pmIt amounts to this: SSI-SSP recipients don’t attend fundraising dinners and write big checks for the campaign coffers of politicians. So they’re relegated to the end of the line when the budget’s divvied.
"For State’s Aged, Blind, Disabled, a Lump of Coal for Christmas"
LA Times, Dec. 22, 2005To save the state budget without increasing taxes, our governor and legislature decided to cut SSI, aid to the poor, to match the COLA the federal government requires every year—in effect denying the COLA to the people to whom that average $33 increase means the most.
Says Chris Brown, who suffers cerebral palsy, “It’s getting harder and harder for people like me to lead independent and productive lives.”
Indeed.
Ooooh, I can do this now!
everyone is required to do one of these introductory posts, aren't they?
Well, hello. I'm Amanda. I've been a commenter at various blogs for a little while now, with one small claim to fame, but besides that just another humble member of the masses.
I'm a California native and a recent transplant to the Pittsburgh area, where my now-husband has lived all his life. We live south of the city now in a sparsely-decorated apartment with our two cats, Mitsy and Buddy.
Buddy sighs, Are you done yet?
