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.

• If I get up and do that something without the painkiller, I stand chance of coming under that terrible crushing pain afterward (or even during).
• Whereas if I do take that painkiller, I will probably be able to get up and do more than I was able to do before, and with less pain.
• But on the painkillers, I feel more inhibited. Not physically or mentally in particular, sort of in a different dimension. I have two modes on painkillers: 1) Incredibly motivated, get up and do a ton of stuff, uncomfortable sitting doing nothing. Or 2) Inhibited, unmotivated, not wanting to move, even though I’m not feeling so crappy I couldn’t do anything.
• Why is this? Maybe the same pain and inability is raging on underneath the chemical alterations, and that’s why I can’t get up and do anything, even though I don’t feel like I can’t get up and do anything. I certainly feel this even without the painkillers, that’s sort of just how my body works: sometimes, I just slow down and find I can’t push myself to do XYZ (walk faster, for instance) even though I’m not feeling the pain (yet).
• So maybe if I am in that sort of state, a state of inability, and I take the painkillers, I don’t change my ability, I just change my experience of the pain, if that makes sense.

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 don’t have a football team (which, while I like the sport somewhat, I can’t stand the culture surrounding it, so I was very, very glad they didn’t end up having that).

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….