Anger Burger

Today I am not feeling so hot – the kimchi fest of last night maybe wasn’t such a super idea.  Still, it’s always a risk eating anything (sometimes even rice bothers me) and I’ve made my peace with that¹.   As I was thinking about this I remembered that a few days ago my friend sent me an email saying that she’d seen a commercial on TV for a website called “Living with Crohn’s Disease.”  And I sighed.  Because I’ve encountered these guys before.

Living with Crohn’s Disease is run by Centocor Ortho Biotech Inc., makers of a very successful and very expensive drug treatment called Remicade.  And this is where things get confusing.

There is also a blog called Living with Crohn’s Disease, which as near as I can deduce isn’t at all affiliated with Centocor, but it’s hard to tell – “Scottie Roy,” the fellow that ostensibly runs the site, has little to make him seem like anything but a fabrication, aside from the fact that he doesn’t seem to have an ulterior motive (I could email him and presumably clear all this up, but then I’d be confused with an investigative reporter).  Roy’s blog is often informative if utterly without personality² (I would never have read this arresting Esquire article written by a Crohn’s sufferer, elsewise).

Let me get to my point: how moral is it that a drug company is running a “community” for its potential customers?  When you put it that way, it doesn’t sound so good.  On the other hand, who better to host this sort of whine-fest than the people making the money off it?  Oh, who am I kidding, I can’t be neutral about this; I think it’s fucked.  Remicade costs $2000 per dose.  PER MOTHERFUCKING DOSE!  The alternative is to use the hated prednisone, a steroid with more side-effects than badly cooked crystal meth — but! — at $20 for a generic-brand run of it, guess which one your health insurance is going to pick?  Now I’m ranting.

And then we have the website itself, which appears to have been assembled over the course of 30 minutes by someone with a lifetime subscription to iStockPhotos.  Wee!  Even with Crohn’s you can look forward to having your frisbee deathgripped by a mob in ecru.

Even better yet!  Oh my god, this makes me actually laugh.  Yay, tickletime!  And you can eat all the dandelions you want!  Oh, the laughter is hurting my diseased colon.

As an experiment, I decided to sign up for the “Living with Crohn’s Disease” (website and not blog) symptom assessment quiz, wherein I assumed I’d be told that perhaps Remicade was the drug for me?  Until I read the EULA at the bottom:

“Your name, address, and other information that you give us will be used by Centocor, Inc., and companies that work with Centocor, including other affiliates and parent companies, to support Centocor’s business.”

Bright red font is my emphasis.  Because: HOLY FUCK, NO SHIT.  I can’t even be sarcastic about it, it’s so cut and dried.  In my apartment building is a British couple that I’ve come to be friends with, and one night over dinner they remarked on the blatant and horrific American trend of marketing drugs directly towards customers.  “Ask your doctor if Prodick is the drug for you,” etc and etc.  It launched a mild discussion (I played the devil’s advocate: shouldn’t people be informed of their options outside the doctor’s office?) that I still haven’t personally resolved, at least until I saw Living with Crohn’s Disease (website and not blog).  One thing I know for certain: drug companies should not be allowed within 100 yards of stock photography.

¹ And by “made my peace” I think we both know I mean “have developed a stable hate towards.”
² I’m also concerned about the fact that his “posts” consist entirely of fully copied articles from other sources, and often with little effort made to clarify that he didn’t write them. I’m not saying this is done purposefully, only that it is another point making it difficult to tell if the blog is legitimate or not.

A while back I noticed that this website was found by someone Googling “tomatoes and Crohn’s disease” and I laughed, because it’s a bit of an inside joke.  The short answer is: no.  They can’t.

Dear fellow Crohnie,

I know how you’re feeling right now, like the retarded kid who has his own table at lunch because he’s allergic to even the radiant molecules of a peanut, and you’re thinking, “It can’t be the tomato I just ate, it’s just some random reaction of the Crohn’s.”   And that might be true, I guess.  But I think you and I both know the truth.  And there’s only one cure.

Stop eating the goddamn tomatoes.

Just stop eating them!  Oh sure, some of you fancy Crohnies have all that health insurance and shit and have everything “under control” with medication, but I’m talking to you too!  The skin fiber combined with the acid is a UXB just waiting to reach your bowels.  I know what you’re thinking, you’re looking at that last post I wrote about the lamb burger and you’re looking at the tomatoes and hissing “You hypocrite!” but ah-ha!  There you are wrong, sir and/or madam!  I pulled the bastards off before I ate!

At some point you will have to accept this.  Eating tomatoes is Russian Roulette, except instead of one bullet randomly distributed amongst six chambers, it is six bullets randomly distributed amongst six chambers, and also they are not bullets, they are tomatoes.

With Love,

Sunday

As a quick check-in with my Crohnie Homies (haaaaay) I wanted to write a note on traveling with Crohn’s disease.

To bring everyone up to speed, Crohn’s disease has a lot of potential problems, one of which is the effect of stress on a diseased intestine.  And guess what!  It totally makes you have diarrhea.  There’s no fancy way to put it.  It’s physically painful, it’s exhausting and all the stress of travel is amplified by needing access to a restroom.  Imagine trying to stand in line for customs waiting for a critical connecting flight when you have to stop what you’re doing, get out of line and drag everything to the toilet.  Happy Vacation!

Much of the time I’ve adopted a “Well, whatever,” attitude.  It sounds very esoteric, but it’s true: even though I am a world-class worrier, there are certain things that I’ve learned to accept the hard way, such as:  I have to use the rest room when I have to.  The alternative is shitting myself in public — and this is just the dramatic side.  The less dramatic side is that when I am in the midst of a Crohn’s attack, I can think of little else.  My brain shuts down.  No amount of caffeine will bring it around to alertness.  The pain is workable but very, very insistent; I can think of little else to compare it to.  Rather like a very loud, cacophonous noise in the background, where you have spats of concentration, yes, yes, you nod while someone is speaking to you, but then it all piledrives up again and you’re lost in sensation.  Sometimes I think my trips to the bathroom are as much to reorder my brain as to void my bowels¹.

A Crohnie of mine remarked that I was very brave to travel with Crohn’s disease and I felt oddly deflated, like I’d been caught in a lie.  I’m not brave while I’m doing it.  I’m wondering what the hell is the matter with me to keep doing this to myself, but like so many things, after it gets better I just forget it was bad.  Even feeling like I was going to die at the top of Mauna Kea (I’ll tell you that story another time) has become a comedic interlude.  The secret ingredient here is humor.   You can plan ahead and fret all you want, but if you take it all too seriously it is doomed before it has started.  And believe me, I know you can’t just tell someone to not take it all too seriously.  But you can keep reminding yourself that this is the way its going to be, and you’re powerless to it.  Surrender.  Stop fighting.  And all of a sudden it begins to seem rather absurd, and absurdity is the gateway to all kinds of greatness.

On a practical level, you probably already know what to do, but it’s nice to have a reminder.

• Try and plan ahead as much as you can.  Better to have long layovers in airports than short ones (in particular pay attention to international flights that try and book a subsequent domestic transfer with almost no layover — reschedule that bitch!).

• Bring babywipes with you, they make everything a little easier.

• Go to the lavatory on the airplane even if you don’t have to go (I’m always surprised at how well-trained my body is).

• Bring snacks with you.  This is critical, for people with Crohn’s and those without.  If you’re like me then you find yourself at the airport offended that they’re charging $8 for a whole-grain bagel you can’t even eat.  Luckily you brought individually wrapped cheese slices!  Go you!

• If you haven’t already talked to your doctor about self-dosing with prednisone to get yourself out of a sticky situation, do so NOW.  Twice in my life this self-dosing has saved my ass (literally!  ha!) from a hospitalization, but prednisone is a potentially dangerous medication and only you and your doctor can make this arrangement together (just remember, no matter what you do: taper down).

• Don’t be above taking an anti-anxiety medication.  If flying is so nerve-wracking to you that it triggers an attack, for Buddha’s sake, take something ahead of time.

• If it makes you feel better, prepare for a worst-case scenario.  It’s odd how much this helps for all kinds of things.  Is pooing your pants the worst thing that can happen?  Pack a clean pair of underpants and a small, light crinkle skirt (I don’t know what to tell you, boys) in your handbag and at the very least you’ll be able to change out of your clothes and appear normal again quickly.

• Exhaustion will be an issue, so try and plan accordingly.  Do not schedule anything for your first day.  Do not.  DON’T.  And I mean your whole first day, not just the travel day.  The first whole day is just for drinking hot beverages and taking short walks around wherever you are.  THAT IS IT.  Trust me on this one.

Anyone else want to add anything?  I know there are a fair amount of readers finding this website by Googling Crohn’s questions – any of you want to weigh in?

¹ I apologize for writing “void my bowels” in a food blog, but you should have seen it coming.

I’ve been thinking a lot lately about diets, and not because I want to be on one.  It’s because I work at a bookstore where a large table/display of nutrition and diet books was set up, and I walk by it and stare at it probably dozens of times a day, and by the time I get off work I want nothing more than an entire extra-cheese pizza topped with mini-doughnuts.

I think the repellent part of the books boils down to two main categories:

• Fad Diets — diet books that recommend eating habits far outside the natural human spectrum of eating

• Semantics Diets — diet books that aren’t really diet books at all, but massive compendiums on common sense

An example of a Fad Diet book that is very popular right now is Bethenny Frankel’s Naturally Thin.  You may know Frankel from The Real Housewives of New York — or not, I didn’t — and after reading this book of hers you’ll know her as The Lady Who Wrote a Book About How to Be Anorexic.  I’m not being snarky here: in the book she advises that you can eat “whatever you want” provided you only take three bites.  Literally, truly, this is her primary diet tip.   Aside from that she advises that you refrain from eating until you are really hungry (which scads of research has shown does the opposite of what she thinks; it sends your brain into ‘starvation mode’ which then tells your body to grip tight to all that fat), her real secret to being “naturally” skinny?  She eats less than 1,000 calories a day.

To give you an idea of what 1,000 calories a day is, the average, sedentary adult needs 1,400 calories to maintain weight.  In other words, if you were on a ship lost at sea, unmoving except to drink water and eat some raw fish you caught, you’d need to eat 1,400 kcal of that fish¹ in order to keep from dropping pounds.  An active average woman needs more like 2,200.  Frankel, who we are to assume is also exercising regularly, based on her book and her TV appearances, is either lying about what she’s eating (since she’d quite literally be dead if she ate less than 1,000 calories a day), or … wait, no, that’s the only answer.  She’s lying about what she’s eating.  Her little “I can eat whatever I want” splurges must consist of three metered bites of seal blubber.

And this shit sells like crazy!  People love this garbage!

I’m less critical of the Semantics Diet books, which are primarily just lessons on how to eat less fat, and how much you should be exercising.  They are by themselves harmless, though in the long-run of the psyche I suspect they’re pretty harmful anyway.  I don’t think people just don’t know they’re not supposed to eat a whole box of Ho-Hos.  I think we all know.  And I’m not even totally sure that counting calories is going to help most people (though, education on that front is certainly needed – I have a nurse friend who told me an anecdote about teaching women and children how to read the nutrition labels on a package of tortillas, and all of them confidently answered that the serving size represented on the label was for the entire bag of 30 tortillas.)

In fact, if I had to recommend a diet book to someone, I’d recommend The End of Overeating, by David A. Kessler.  And surprise: it’s not a diet book at all.  It’s an examination of what he calls “conditioned hypereating,” a sort of brainwashing we as Americans are subjected to by the mere presence of Big Macs.  I mean, I’m obviously paraphrasing here.  What I like about The End of Overeating is that he provides a culprit and a solution while acknowledging what no diet book does: there is no quick fix.  For many Americans, this will be the hardest thing they’ll ever do.  Many generations of Americans have worked toward making sure that we eat a lot of processed foods, but it should hearten most to know that mere understanding of this fact is sometimes enough to stop people.  Though, as a side note, I have to say that I don’t think I like what the cover of his book is implying, that instead of eating carrot cake we should eat carrots.  I think we can all vote a hearty “fuck that shit,” yes my readers?

Also to my great agitation: The Fat Flush Diet Plan by Ann Luise Gittleman.  Oh my dog (<—actual typo!), I want to punch this woman in the tit.  Like many of her ilk, under the guise of some kind of medical hooey, Gittleman walks you though subsisting entirely from a slurry of ground flax seed, unsweetened cranberry juice and and fuck knows what else.  Dubbing herself the “First Lady of Nutrition” does little to earn points with me, particularly after advising that people with Crohn’s disease follow her liquid purge fiascoes (she believes, in part, that bacteria are responsible for why people with Crohn’s disease feel bad, despite all medical and scientific evidence to the contrary).  And sure, all her Whole Foods rampage shit is many times better than Miss Bethenny up there, but they are two ends of a really ill-conceived whole.  One should never, ever, ever forget that these people are selling you their advice.  They tell you: you cannot do this without me.  Gittleman is the First Lady for sure, but of needlessly complicated, fussy and expensive fasting.

But I suppose no one will get get rich off of a book that merely reads: burn more calories than you consume and you will lose weight.

¹Also to give you an idea of how  healthy fish is, 1,400 calories of fish is about three edible pounds of fish meat, depending on the species.  Bad news if you’re actually lost at sea.

Do you ever catch yourself saying that you were a ____ in another life?  A Mexican?  Italian?  And just because you find the food delicious?

I’m pretty certain I was Polynesian in another life, though not just because I love Spam (more on that at a later date) but that’s another story.  Food-wise, I’m sure I was Korean in another life, and Chinese before that one, and Japanese before that one, and Vietnamese before that one.

Mostly, though, it’s that most Asian foods agree with my digestive system.  They tend to be lighter in fiber and have a variety of probiotic elements like miso and fermented vegetables.  A proper Asian meal of virtually any provenance almost never sends me packing in a gut-clenching Crohn’s 100-Yard Dash, which still somehow does not translate to me actually cooking like that at home.

I mean, I eat a lot of rice and as we should know by now I eat a lot of pickles, but there are certain meals that just make me happy and I never seem to remember to make them.  My friend Junko in Seattle would prepare these lovely, quick meals of a dozen little dishes of pickles and a cup of miso and some rice and maybe some broiled fish, and it would all come together in no time because she already had everything she needed in the fridge, and they would inevitably be among the best meals I’d ever had.  I would feel invigorated and, well, nourished, instead of full.  And she’d look at me like I was crazy when I flipped out over the whole thing, much like my friend Leesa nearly had a panic attack when I made whipped cream from liquid cream.  She thought whipped cream was just something that came from a can.  This was when I first realized that I loved her.

Aaaanyway, I couldn’t locate any Korean shredded squid, but I found this possibly Vietnamese, possibly Chinese (the package says it is made in China, but there is Vietnamese printing on the package) shredded squid and tried to make my first batch of my favorite side-dish, the spicy squid strips.  And guess what?

It turned out great!  I didn’t even follow the directions very well, I just dressed the dried squid straight and ate it.  I made it again today and instead soaked and then fried the strips in the sauce, and the texture was a little improved, but still, I’m inordinately pleased with myself.

I mixed up a little side of miso, which made me reflective on a time when I was having dinner at my friend Kanako’s house a lot, where there was almost always a giant commercial-size soup pot of miso simmering on the stove in her communal house.  They’d add heaps of vegetables and pounds of tofu and everyone would sort of dig in as they pleased while a rice-maker kept pounds of cooked rice hot for kids to eat from as the evening went on.  As I age, I forget that being punk rock meant trying to keep healthy in between bouts of alcoholism.

Takuan, the knife that nearly took my thumb and some shiso leaf.

I bought a giant daikon pickle (often used as an ingredient in vegetable sushi) called takuan and was home before I read the ingredients and saw it was sweetened with aspartame.  Giant sigh.  I’ll eat some of it, at least, but I tend to put up cross-fingers before the beast aspartame.

Those homemade gyoza were from about two months ago, but some fresh ones are coming to Anger Burger soon.

Still, as we set up to eat our little buffet in front of the TV (how entirely American!) to watch Lost Boys again for the first time in at least ten years for each of us, I had to marvel at what started out feeling like a cobbled-together dinner.  This is how I want to eat most nights.  Try and help me remember.

Dude, I’m exhausted.

I forget that being tired is a part of having Crohn’s disease and instead fret over how it is that an essentially easy-ass part-time job makes me need entire days of lying around doing nothing – which is not an option, of course, because every day I spend at work is a day the kitchen floor conspires to get TOTALLY FUCKING FILTHY.  Seriously, I don’t fling food around and Mike doesn’t even cook, how does it get like that?

To top it off, I’m mediating a fight my camera and my Photoshop are having right now, so sit tight while I figure shit out.  Also?  Super grumpus today.

• We have an on-going issue with our landlord over the niggling issue of whenever someone starts a load of laundry in the laundry room, our hot water is no longer hot.  In other words, if I am taking a shower LIKE TODAY and someone starts a load at the exact same time then I RUN OUT OF FUCKING HOT WATER WITH ALMOST NO WARNING.  The handy-man, Ivan, insists that our hot water tank isn’t hooked up to the communal washer and thus does not understand why this is happening to us.  Everyone is baffled and yet, only I get to jump out of a cold shower with my legs half-shaved.

• Oh, camera and Photoshop squabble solved?  Turns out I don’t understand how RAW works.  Rad.

• I have to go to my credit union, aka The Shittiest Credit Union Ever.  We have a joint savings account which we don’t need because we actually needed a checking account but they wouldn’t give us one because their credit search for Mike glitched and failed to turn up anything (seriously, his credit result just printed out as “N/A”) and they have a policy to NOT do a second search.  What?  But we needed a joint anything tout de suite for some legal garbage and now?  Even after having a savings account?  They wouldn’t let Mike deposit HIS OWN PAYCHECK because they had to CONFIRM HE REALLY WORKED THERE.  IT IS A MOTHERFUCKING CHECK, YOU ASSHOLES.  I’m too lazy to switch to another credit union that isn’t within walking distance.

• Grump!

• My pepper grinder broke!  What a douche!  I go through about a pepper grinder a year because I refuse to pay $80 for the Porche one or whatever, but this is getting ridiculous.  And I really liked that one, too, it was heavy.  Which is how I judge quality.

• I have a headache and I took Excedrin before remembering I still have Darvocet and now I have to wait a few hours for my stupid liver and/or kidneys to process the Excedrin.  Bodies are lame!

I’m going to go for a walk and think about all the things I should have done today.

You might have seen in the news that Southern California has been experiencing a record heatwave — I’m here to tell you it’s all true.

I’ve taken to walking the 2 miles to and then from work every day because it’s just the right distance for me to feel invigorated rather than tired, and also I’m a penny-pincher.  The thought of driving just two miles to work is embarrassing even for my lazy ass.

However, should the temperature rise above 100° Fahrenheit, all standards of decency are discarded.  I busted out the car, cranked up the air conditioner and rode in blissful self-largess until I got home and realized that I was still too hot and miserable even to make dinner.

Enter: European.

O blissful European.  That most bastardized and beloved of meals.  When I was young my parents called a simple, uncooked dinner of bread and/or crackers, fruit, cheese and maybe meat “European,” as though the only difference between us and backpackers in the south of France was our continent.  Better than calling it Freestyle Parenting Dinner, which is a legitimate alternative.  Or Unseasonal Heat Dinner, as in last night’s case.

I already had a loaf of bread lying around getting stale, so some fresh grapes, a salami mix and sliced Persian cucumbers built up the bulk of the meal.

In the past I’d create a salad caprice – layers of fresh tomato, basil and whole mozzarella dressed with vinegar and olive oil – but in the last few months I’m really starting to come to grips with what might have to be my final goodbye to tomatoes.

Years ago they didn’t bother me, much to the surprise of my Crohnies, each of whom couldn’t digest tomatoes any more than they could digest driveway gravel.  Eleven years after I was diagnosed with Crohn’s I am finally starting to understand, oooh, that’s what tomatoes do to you.  You’re not really enjoying your disease until a slice of fruit-vegetable makes you pray for death, that’s what I always say.  However, the only real impact?  No more salad caprice.  Or rather: turns out that salad caprice is pretty good even missing a primary ingredient.

At the last minute a boiled egg sounded good enough to suffer boiling a small pot of water (O, the humanity!) and all told, I think my body handled it pretty well.  Of course, I got stressed out about work all last night and this morning and then triggered a minor flare-up again, but fuck it.  Nothing a bottle of wine can’t make a lady forget.