Tired isn’t a word I use lightly.

For years I worked a full time job while getting a few degrees, then teaching as an adjunct professor, sometimes supervising student clubs, and also, you know, having a life. I’d race around the office all day long, then grade papers, then lecture for two and a half hours, maybe do some research, eat dinner at midnight and get up at 7 a.m. the next day and mainline coffee while complaining I was tired.

I did not know what tired was.

I thought tired meant only reading the first and last chapter of a book in order to be able to follow the class discussion but still make time for an extra 2 hours of sleep before the history seminar I needed to graduate on time.

I thought tired meant asking the department to hire a graduate assistant to teach the lab so I could grade papers and still be able to drive myself home without falling asleep behind the wheel.

I thought tired meant needing to throw an extra shot in my latte before lecturing non-physics majors about calculating reverberation time.

I did not know jack about tired.

I was an amateur in the world of tired.

In 2004 I turned Pro.

In 2004 a couple of hereditary inflammatory autoimmune disease came out of hiding and kicked my ass. Eventually, I had to stop working, quit teaching, quit planning on well, being able to make plans. It’s a situation that requires a lot of adjustments.

You know what goes great with tired? Searing joint pain. Together they’re like milk and cereal. Leather and lace. Peanut butter and chocolate. Crocket and Tubbs.

Actually, they’re like none of those things. The new migraine medicine my doctor prescribed has a lot of codeine in it and I strongly suspect it just kicked in.

So what was I saying?

I have no idea.

I just got an adaptation of Alice in Wonderland that stars Gary Cooper, Cary Grant and W.C. Fields and it’s hard to pay attention to this post.

It’s also a situation that comes with a lot of interpersonal frustration. People – no matter how well-meaning, don’t understand how exhausting pain and fatigue are. They say less than helpful things like, “I wouldn’t ever tell anyone I was sick, I can’t afford the damage to my career.” Or, “I get tired too, but I just suck it up.” Or, “If you’d stop eating tomatoes, you wouldn’t be sick.” Or, my personal favorite, “My (mother/sister/imaginary friend/neighbor) had cancer and she had a really good attitude never missed a day of work,” followed by a long pause during which I can only surmise I’m supposed to cheerfully reply, “Well slap my ass and call me Susan! What was I thinking? Thank you so much for helping me see the light!”

Sarcasm, by the way, is not an accepted trait if you’re to accept the role of Saintly Sick Person.

So here’s the deal, being extremely sick gives one lots of blogging material – the ridiculous medical adventures, the various physical therapy modalities, the challenges of keeping your friends and your sanity when life becomes super-unpredictable, and the sometimes bizarre alternative therapy suggestions that well-meaning relatives offer up when you least expect them. (Not that Western medicine can’t be pretty bizarre).

I’m going to withhold any personal details or specific diagnostic information I see fit to withhold but hopefully I can still be useful, engaging, and realistic without waving my underwear in the wind.

I’ve slogged through a lot of the prospects both Western and Eastern medicine have to offer and the results haven’t always been pretty, though some of them have been rather hilarious. Hot yoga? Hot yoga is hot. Very very hot. And it’s not something you should try while wearing hand lotion.

As it turns out, the dubious claims about the effects of eliminating stone fruits from your child’s diet (or maybe adding more of them to their diet. whatever) seem to have their roots in a respectable – or at least, not totally insane – diet known as the Feingold Program.*

I haven’t done a lot of research into the claims of the Feingold Program and I have no opinion on it, although many of it’s suppositions seem completely reasonable, at least in theory. I tried to speak to a yoga instructor I know who has extensive experience with the program, but she immediately went off on a tangent about how autoimmune diseases such as MS, lupus, and osteoarthritis can be cured by eliminating nightshades – potatoes, tomatoes, peppers, eggplants – from one’s diet. Osteoarthritis is not an autoimmune disease, by the by. I no longer bother to discuss this nightshade thing with people, it’s simply not worth it. I just smile politely and make secret plans to harvest their organs.

I’m tired, I need to consider getting ready to head over to a fundraiser for fotoweekdc at Local 16, and instead I’ve gotten sucked into reading about Static Guard in the toxnet database maintained by the National Library of Medicine. You want something that’ll keep you up at night? Spend some time at toxnet.

*Updated after being inundated with stories from trusted friends who have tried Feingold and were shamed for “causing” their child’s autism by vaccinating them or feeding them the wrong foods. Maybe it’s insane, but I don’t know for sure.

You know who annoys me more than newly converted Jesus freaks? Newly converted dieters. Today I was just trying to go to CVS to get some Tylenol when I was pounced on by “nutritional consultants” handing out samples of some new pom-soy-who knows what “nutrition” bar.

I declined and said, “I’d rather just eat the actual unprocessed fruit.”

I know this usually provokes a fracas, and I must admit I was a little feverish and I was looking to rumble.

Much to my contrarian chagrin, the perkier of the two woman didn’t take the bait! She actually agreed with me. I wondered if her corporate overlords know she’s saying such things?

At first.

Then she started yakking about the importance of eating a fruit or vegetable from as many colors of the rainbow as possible every day and how hard that can be and how her product can help fill those gaps when you just can’t find so much variety.

I’m not one to lose so easily, so I tried derailing her by asking whether bananas counted as white or yellow. I actually wonder about this, so it wasn’t completely combative of me. Then I brought up peaches. Pink? Yellow? What about the one I had with breakfast? It was pretty whitish inside, more of a cream than a true canary.

I started to feel guilty for being obnoxious and sounding self-righteous so I told them I’d spent the weekend subsisting on Guinness, tater tots, and chocolate. They giggled at my joke; they thought I was kidding. I wasn’t.

I also wasn’t kidding about eating actual fruit instead of pre-packaged snacks and this was making the Nutrition Specialists pouty and combative because I still wouldn’t try the snack sample.

The more she tried to make me eat the Soylent Pom, the more resistant I got.

Then the whole thing got derailed because someone else pointed out that you should never let your kids eat peaches because they’re a stone fruit and everyone knows that stone fruits cause ADHD. Or maybe Autism. Or maybe they just make them worse. Or maybe eating them makes the symptoms better.

Best not to take the chance. Make sure your children are terrified of peaches and apricots and cherries. One bite and their brains will implode. Or maybe explode. Just don’t take the chance.

Everyone seems to know this, with great certainty, even if they aren’t certain what they know. Everyone agreed it was something that started with “a” and that it was very, very bad. Apparently, giving little Jayden or Avery or Eithne stone fruits is now more dangerous than feeding them sugary breakfast cereals or letting them take a bath without water wings before they’re 18.

It always disturbs me when people are so adamant about eliminating a specific food or consuming a food based on vague health claims, even more so when they aren’t even sure why they’re doing it in the first place. Perhaps there’s a connection, I’m not an expert.

I wanted to shout a few disease names that started with “a” but I saw an opening and I took it, so I sprinted to my car and went home. They aren’t my kids and it isn’t my business, but the medical anthropologist in me still likes to stay aware of these wacky trends and the social and cultural implications of them.

Once I got home, I sat down with my macbook and tried to suss out the genesis of the stone fruit/ADHD or autism connection but quickly got distracted by Monsters Cereal, an entire blog devoted to Count Chocula, Franken Berry and Boo-Berry. Then I got sucked into the YouTube.

Then I got distracted by Breakfast of the Gods.

God bless the Internet. I feel better already.

So I tweeted about the number of people I’ve encountered recently who either have no understanding of basic science or are just plain stupid about some of the ways humans (and other animals) can get sick. What set me off most recently was a so-called health care professional who was holding forth about how influenza is not contagious and the only way to spread it is via vaccine. (There were other pseudo-scientific gems, but I’m trying not to digress for a change).

I got lots of hilarious commiseration from friends and twitter followers – I’m pretty sure everyone in the world has that co-worker or friend who claims to never be sick, even though they’re constantly complaining about being sick. Sadly, the fact that these people don’t like to admit that they’re wrong to the point of making others around them sick isn’t so funny.

The vaccines aren’t perfect and they can’t cover every viral mutation. You can still get sick – but why take the chance you’ll get a flu you can prevent, which weakens your immune system and leaves you more vulnerable to a host of other infections you might otherwise shake off?

The CDC has a rather thorough website on the matter of the flue, as does the World Health Organization.

Since most people get an average of 4-6 colds or other viruses-y things a year, statistically speaking many of them are either sick and asymptomatic or get sick soon after they get a flu shot and mistakenly believe the shot gave them the flu. Or they’re very prone to the power of suggestion and are so sure the dead vaccine will give them the flu they develop symptoms. Or, they’re just stupid. We can’t rule out stupidity.

I’m going to avoid a digression into how sad it is that many healthcare workers – doctors, nurses, EMTs, lab techs – need to be threatened with sanctions before they’ll be vigilant about washing their hands, getting vaccinations, or following other basic protocols. It hurts my brain. It hurts my brain that people who claim to care about the public good are reckless and it hurts my brain to rein in so many digressions. But I’m digressing about digressions…

Yes, there are people who are allergic to eggs or have illnesses that preclude vaccination, my issue isn’t that people who don’t get a flu shot are automatically the devil. I’m just annoyed with the arrogant idiots who think they have superior genes and, when they do get sick, refuse to admit it or keep their germs at home.

I don’t even think flu shots should necessarily be mandatory for the general public, but I think that people need to take the time to be better informed about the flu and I think they need to show better common sense when they are sick. Sadly, common sense seems to be in short supply.

It’s not worth arguing, or at least not worth my energy to argue anymore – I just do my best to avoid them. Colds, flu or mucous-spraying viral infections of any kind are no laughing matter to those of us on immunosupressing drugs. I had several people who “never get sick” persist in coming to events last year even though they were clearly sick. One of them coughed up the mucous equivalent of Lake Michigan at a small gathering, all the while insisting it was just a sinus infection and couldn’t possibly be contagious. Four days later, everyone else who was there got sick with the same symptoms. Coincidence? Maybe. Maybe not. After that I spent almost 2 months with pneumonia and almost drowned in my own lungs, so as you may imagine I’m a little bit prickly about the whole thing. I say that not to be selfish, it’s your decision how to manage your health and personally I have no problem being aggressive about making sure that I do all that I can to avoid people who’re sick even if it hurts their feelings. I think people want to play games with their own health, that’s fine, but I think it’s selfish not to think about their families and the people who rely on them, to not take simple precautions not to spread more germs around than them than have to because they’re afraid of shots or arrogant or whatever. Really folks, this is not brain surgery.

Incidentally, when I say I heard hilarious stories – I don’t mean that sarcastically in reference to the ones about the deaths of children or loved ones, I mean the ones like the manager who announced she “doesn’t get sick” minutes before she threw up all over the clients conference table while her minions (my friends) tried to look appropriately concerned but really wanted to fall down laughing.

An influential psychiatrist who was the host of the popular NPR program “The Infinite Mind” earned at least $1.3 million from 2000 to 2007 giving marketing lectures for drugmakers, income not mentioned on the program.

What could possibly go wrong with that? Or with this:

Dr. Goodwin’s weekly radio programs have often touched on subjects important to the commercial interests of the companies for which he consults. In a program broadcast on Sept. 20, 2005, he warned that children with bipolar disorder who were left untreated could suffer brain damage, a controversial view.

“But as we’ll be hearing today,” Dr. Goodwin told his audience, “modern treatments — mood stabilizers in particular — have been proven both safe and effective in bipolar children.”

That same day, GlaxoSmithKline paid Dr. Goodwin $2,500 to give a promotional lecture for its mood stabilizer drug, Lamictal, at the Ritz Carlton Golf Resort in Naples, Fla. In all, GlaxoSmithKline paid him more than $329,000 that year for promoting Lamictal, records given to Congressional investigators show.

What possible part of any of that was even remotely ethically acceptable to Dr. Goodwin?

Although I’ve been on what amounts to the injured-reserve list for Serious Academic Researchers, I follow developments in my fields, particularly medical ethics and technology. While the August 4th Washington Post article, “Prescription Data Used To Assess Consumers – Records Aid Insurers but Prompt Privacy Concerns” contained no new information for me, it reminded me I just got another idiotic letter from the prescription drug managers for our health insurance plan. I get these letters every couple of months. You probably do, too, if you fill prescriptions at a brick and mortar pharmacy.

The letter cheerfully tells me how much I can save my using mail-order instead of my local pharmacy, and then it usually lists the 4 or 5 drugs I take according to their records. Usually between 1 and 3 of the drugs listed are correct. These drugs also aren’t available through their mailorder service, which I know because I always call about the letter and they tell me I can’t mailorder, as if it were my idiotic idea to try to order them in the first place. The other drugs on the list are usually ones I’ve never even heard of, let alone taken.

I’m sure I’m not the only one this happens to. It isn’t just irritating, it could have a profound impact on our lives, particularly since this data is increasingly available to prospective insurers, life insurers, prospective employers, and the Federal Government. Additionally, a person’s access to health insurance or life insurance or whole fields of employment doesn’t just impact them, it impacts their entire family.

I’m reminded of a lunch at a conference a few years ago. One of the (European) participants at the table mentioned what a vital tool it would be to compile a list of all individuals in the E.U. with “Arab-sounding” names who take anti-depressants (which are, incidentally, described for a wide range of conditions). Presto! Instant watch-list of potential suicide bombers. Chilling. The Americans at the table seemed to feel that this would never happen in the U.S. because of our privacy rules. The sad part was, these were people who should know better, which makes me feel rather hopeless about whether the average person will understand the path we’re on before it’s too late.

In February, the Federal Trade Commission issued an order saying that MedPoint and IntelliScript are consumer reports under the Fair Credit Reporting Act, so the companies must notify insurers that consumers denied insurance on the basis of these reports have the right to request a copy of the report and that errors be corrected. The FTC’s order followed a settlement of allegations that the companies violated the credit-reporting law by failing to provide such notice to insurers.

Bob Gellman, an independent privacy consultant in Washington, said the FTC’s decision not to fine the companies sends “the message that it is okay to ignore the law.” That, he said, “is absolutely outrageous.”

As more health records become electronic, he said, more parties will compete to sell more comprehensive patient data to insurers, driving down data prices. “It will all likely be lawful,” Gellman said, “but consumers will likely continue to have no real meaningful choices if they want insurance.”

Consumer groups have got to speak up and speak up soon about creating a mechanism to audit and correct this kind of data. The unfortunate thing is that, in order to correct an insurance record, the pharmacy needs to be contacted and the doctor or doctors needs to be contacted to confirm a drug was or wasn’t prescribed. Many doctors will find a way to bill this, probably to the insurance company, who will find some way to hold the consumer accountable for the charge for an action that is necessary to clean up their data in the first place.

Someone needs to put this issue into plain language and start a serious national conversation. It’s ever-so-slightly heartening to see articles on the front page of the Post, but that’s not enough to effect change.

None of my doctors accept or file insurance, although I get reimbursed by my insurer without any problems. These practices have fee schedules, same day appointments, use email, and assure the patient a 30, 60 or 90 minute appointment. These are not concierge practices, thankfully.

It terrifies me to think about the ripple effect that more and more doctors converting their practices to “concierge” practices will have as more and more doctors with a true patient-focus leave the insurance system – and the poor and least healthy – behind. Concierge medicine, where you pay 25 grand to “join” a practice? That I find seriously troubling, but not surprising in our Market-crazed society. I think that kind of service would have evolved regardless of the HMO situation.

It would figure that now that media attention is on concierge care it doesn’t seek to address the underlying managed care issues that drive doctors to do this, but rather looks at the impact on the insurance companies.

WebMD actually looks at some of the serious implications of this issue in a clear way in Lawmakers Look at ‘Cash-for-Care’ Boutiques: Cash-Only Clinics Avoid Regulations, but Could Undermine the U.S. Insurance Market.

I’m quoting the end of the article because it sums things up nicely:

Some policy makers — mostly republicans — like the way that cash-only medical practices simplify care for doctors and patients. Many, including President Bush, want to expand the use of tax-exempt medical savings accounts that would allow consumers to put money away and spend it later on boutique services of their choosing.

But that policy worries critics, who see the accounts and the boutiques as steps toward a divided health care system where wealthier people can afford to pay cash for better care, leaving everyone else to the mass insurance market. Even worse, they say, the boutiques and specialized plans to pay for them tend to attract healthier people, leaving only the sicker — and more expensive — patients to HMOs and the government.

“‘Concierge care’ is kind a new country club for us rich folks,” says Rep. Fortney (Pete) Stark, a California democrat. “We don’t have to sit around with the riff-raff,” he said.

Almost everyone who spoke on Capitol Hill agreed that the U.S. health system’s financing is rife with waste and that costs are rising beyond control. And most agreed that for some patients, being able to shop around for the best prices for a CAT scan or a mammogram could lower costs.

But Robert A. Berenson, MD, an internist who is now a senior fellow at the Urban Institute think tank, warned against promoting boutique care as a cure-all for the health system. He told lawmakers that Medicare spends 79% of its money on patients with four or more chronic diseases.

Letting people shop only for the care they want would just make it harder to insure those ill people, he says. “It would not make a dent in what is driving our health care spending, which is really spending on the very sick.”

Still, others see the trend as a way to return doctor visits to the days before patients were rushed out the door after seven minutes. “[It’s] an older style of medical practice, a patient-focused approach that used to be the norm,” says Utah republican Sen. Robert F. Bennett.

It seems obvious that the solution is to take a good hard look at the managed care system, but instead I’m sure we’ll somehow end up subsidizing a system that discriminates, denies people basic health services, and deepens the caste system in our country.