Wednesday, May 25, 2011

Everyone's taunting the gluten-free eaters

A blogger at Forbes recently suggested that the gluten-free diet is dangerously convenient for teenage girls who want to disguise their eating disorders. My cousin Kim wrote a response on her own blog, which chronicles her and her son's lives living with celiac disease. (Kim is also a former anorexic (go Kim!!!).)

It's fortunate for those of us who follow the gluten-free diet that it's gained enough steam to come into the media's bull's-eye. In the four years I've been eating gluten-free, prices have come down and a zillion new products have become available. Gluten-free bread went from practically inedible (sometimes literally inedible when all the slices were helplessly frozen into one solid chunk) to actually really good. Mainstream brands like General Mills and Betty Crocker started putting gluten-free products right alongside their traditional lines. Rice Krispies recently welcomed a gluten-free sibling.

But some, like Time Magazine, are accusing the gluten-free diet of being largely a fad. Pause: isn't Time Magazine responsible for a good percentage of America's fads? And am I the only one who notices the food fads? Portabello mushrooms started trending in 2002. Roasted red pepper. Green tea. Asiago cheese. Goji berries. Antioxidants in general, in any form. Yes, that pomegranate iced tea will save you from cancer.

If gluten-free is a fad, there's good reason for it. Even if a person has no adverse reaction whatsoever to gluten, if she goes gluten-free, she doesn't have the option to shove ninety percent of the random stuff she used to eat into her mouth. A striking demonstration of this is the USDA's list of the Top 25 Sources of Calories Among Americans, out of its Dietary Guidelines for Americans, 2010 (PDF, page 12). The top 10 are:

1. Grain-based desserts
2. Yeast breads
3. Chicken and chicken mixed dishes
4. Soda/energy/sports drinks
5. Pizza
6. Alcoholic beverages
7. Pasta and pasta dishes
8. Tortillas, burritos, tacos
9. Beef and beef mixed dishes
10. Dairy desserts

That's where America gets its calories from. Dessert, bread, Coca Cola, and beer, with a little meat thrown in for protein. Actually, that does sound right.

If you can't eat gluten, the top 10 above reduces to 4, maybe 5: chicken (without breading), beef, soda, dairy desserts, and some forms of alcohol. Even dairy desserts are hard to come by (wheat makes ice cream so much tastier). Among the entire list of 25 items, gluten-free knocks away about half. And the top 25, as you can imagine, are among the most unhealthy things man has created to eat ("fried white potatoes").

As the USDA notes in the document, a statement that is obvious but so important:
Although some of the top calorie sources by category are important sources of essential nutrients, others provide calories with few essential nutrients. Many of the foods and beverages most often consumed within these top categories are in forms high in solid fats and/or added sugars, thereby contributing excess calories to the diet. For example, many grained-based desserts are high in added sugars and solid fats, while many chicken dishes are both breaded and fried, which adds a substantial number of calories to the chicken.
So if you go gluten-free, you're automatically eating healthier. Your chicken isn't breaded. Your food is fried only when you feel super-confident that it won't be fried alongside breaded food, which is never. More and more, you can find a gluten-free substitute for something you used to love, but that substitute will cost 2 or 3 times as much as its gluteny kin does, and that'll make it more of an indulgence than an impulse buy.

When a co-worker brings in donuts, you'll see them as punishing glazed pain tori, saving yourself those co-worker-inflicted calories and fats and sugars for the day. When you need food on the run, you won't hit up a drive-thru but will instead head into a trusted restaurant or, one of my standby maneuvers, a grocery store.

Over time, your taste buds will adjust, and you'll be filling in healthy food for the junk you used to eat. You'll be eating more fruits and veggies and whole grains. You'll be getting more of your nutrients from the foods you eat and consuming fewer empty calories.

And what's that? With your new diet, you'll feel better. Hence Time Magazine's "fad." Feeling better is contagious! Plus, for a minority, eating gluten-free solves identifiable medical problems, but I'm not surprised that so many other people are liking the gluten-free diet. After countless personal testimonies, medical professionals have found scientific evidence of gluten sensitivity outside of celiac disease.

Now for a short history review. Let's remember that you'll need to eat approximately 25 cups of celery to equal the calories in one cup of wheat. That kind of economy has (arguably single-handedly) allowed Western societies to flourish. Corn and rice provided similar utility in their native lands. The more calories per cup, the more people we can feed. If early societies had relied on celery, the wheel might just now be creaking out of Mesopotamia.

So of course a diet that eliminates society's central nutritional tool has provoked a round of hooting and doubt. Any development that challenges the status quo undergoes a phase of detraction and nitpicking. Regardless, if the development has merit, the status quo changes.

I'm happy gluten-free is rooting into society en masse, and for reasons beyond my bank balance: shortly after going gluten-free, my body woke up. Less pain, less need for sleep, no headaches, a quiet belly. If other people feel as good as I do eating gluten-free, I am so happy for them.

Monday, May 23, 2011

Why do antibiotics make vulvodynia worse?

I had a UTI a couple weeks ago. Doctors usually give me Bactrim for my UTIs. During the first couple years of my vulvodynia, they'd give me 7 or 10 days of Bactrim, and by the fifth or sixth day I was flaring at that level-9 torture zone.

I don't know if antibiotic philosophy changed or what, but the past few times I've had UTIs, the doc has given me only 3 days of Bactrim. Three days of Bactrim isn't long enough to give me scary flares, but I still flare, and the flares get worse with each pill.

In the past, I've meant to ask the doctor for an antibiotic other than Bactrim, but doctors are so whirly and fast that I'd always forget to ask for a different antibiotic until I was on the way to the pharmacy, at which point I'd decide to fill the script because Bactrim won't hurt me this time around. But with this latest UTI, I stopped the doctor from whirling out the door without giving me a chance to think and told her about the flares. She wrote me a three-day script for Cipro.

Turns out Cipro makes me flare in basically the same way Bactrim does. But I made it through -- and with 4 UTIs in the 15 months I've been with Catfish......!.........I'm sure to have another opportunity to see if some other antibiotic makes me flare.

The reason I'm writing this post, though, is that among my many vulvodynia theories, sometimes I think interstitial cystitis and vulvodynia are one issue manifesting in different ways depending on the individual. And maybe I just think this because my pain seems to have elements of both. For instance, I've got the diet issue like IC, but I generally don't have its hallmark urgency.

But since finishing the Cipro, my coochie is on edge. As soon as I eat something it doesn't like -- like chocolate or sugar (of course) -- it starts to flare. On top of that, I have urgency, especially after eating those bad foods. In other words, all of a sudden, my pain has expanded to include some IC symptoms, and it all seems tied to the latest UTI and the Cipro.

In my many hours of crotch readings, I've seen antibiotics cited as a possible cause of IC and vulvodynia, and I've also seen many report that antibiotics make their symptoms worse. But as you all know, no one has a definitive answer about anything involving IC and vulvodynia. Maybe the antibiotics simply kill off too much of our good bacteria? Maybe they do something to our nerves? Maybe they contain small malicious bees? In other words, the title of this post might as well be rhetorical.

The urgency and the more volatile pain I've been having since taking the Cipro are encouraging me to eat more carefully again. Of course, I am hovering just below what the BMI chart says is my lowest healthy weight, and trying to gain weight while also trying to eat healthy implies lots of cooking, which is my lowest priority in the world, and money, which I'm measuring out like a snail.

A serving of celery is like 9 calories. Literally. Okay, 14. It's so good for you, and it makes you poop good, but I will never gain weight eating it instead of milkshakes. Evil, evil milkshakes.

I feel like I would benefit from going back to basics and doing a little elimination diet, starting off eating only the foods I know are safe-safe-safe for me and working up from there. But, again, cooking. I'd rather eat (gluten-free) toast for the rest of my life.

But I probably will figure something out and do it. My cooch feels pretty awful -- though honestly, I am a master pain wrangler lately. I'm cool with the pain and secretly, latently furious with the situation. I might take up boxing. Or axe throwing.

At the same time, I'm trying to keep patient. I don't have insurance, but even if I don't find a job that provides it for me, in five or so months I will be able to get insurance through Ohio's high-risk pool, which offers insurance to people like me, the insurance-company rejects (me due to bipolar disorder; they probably don't know about vulvodynia to disqualify us for it!). After I do, I'll head to that specialist I keep fantasizing about seeing. Last night I dreamt my mom and I went to some top-secret spage-age place for our hips and they found a small problem in mine that was probably the cause of my pain and I started crying I was so happy. It took me a few breaths to realize it wasn't real when I woke up. Axe throwing.

Off to pee again... I've gotten really good at wrangling urges too, especially after that last UTI. I am a pain-wrangling deity.

Tuesday, May 17, 2011

Having good sex when you have pelvic pain

After fifteen months with Catfish, I still have trouble moving beyond my pain and connecting during sex. But it's getting better. Here are some tactics I've come up with that help me focus on sex, and Catfish, and the pleasure I do feel alongside the pain.

1. Visualize people having sex

These people can be you and your partner or other people. Sometimes I visualize what Catfish and I look like from above. Sometimes I imagine us in erotic positions that aren't available to me right now. Sometimes I imagine other people doing things I can't do with vulvodynia, faceless people with nice bodies. All of these boost my libido and the good feelings in my vajayjay.

It does feel weird to imagine other people having sex while you're having sex, or even you and your partner in other positions. Maybe what happens here has something to do with mirror neurons -- you extract from another person's posture what they're thinking and feeling. If you see someone break an arm, your arm shrieks with pain. If you see someone having enjoyable sex, you intuit and maybe even feel their pleasure. This is probably why porn is so popular, and why it leads to tragically fast orgasms for me.

2. Write a romance novel

Narrate everything you and your partner are doing as if you're in a romance novel. "He brushed her hip lightly while his tongue" blah blah blah. This one focuses you on the act of sex and reminds you of all the things going on that don't involve your hooha. It can also remind you of how fascinating penetration can be from a flesh-on-flesh, living-being perspective and encourage you to remember the pleasurable part of sex. Plus it's super-fun. "She shivered as he rubbed his throbbing" etc.

3. Watch it through the other person's eyes

Focus on what the other person is focusing on. For a long time, every time Catfish and I had sex, my thoughts were centered on my body, specifically on monitoring my pain. How bad was it? Was this position okay? Did I need to take a break? Would I have a bad flare the next morning?

Connecting during sex like I had in the past seemed impossible. There was a pain barrier between me and Catfish -- between me and sex. But recently, I started jumping from my perspective to Catfish's, and suddenly I am there again.

I figure that back in the day, making out in my family's minivan and all the encounters that followed up to vulvodynia, the other person's experience played a big role in my own sexual experience. With pain, I started focusing only on my own body, which turned sex into a coochie gamble. Now, when I focus on Catfish and all his movements and signals and grunts, sex is sex, a way of bonding with someone I love.

I wrote a post about how vulvodynia dampens my experience of music. I think the same thing happens with sex: I have trouble connecting during sex because the pain dampens my mental and physical experience, like a finger on a bell. I still don't have a solution for this problem. In fact, I don't even remember what sensing was like before vulvodynia. I just know in a factual way that my sensory experiences are different now.

I also wrote a post about why I keep having sex despite the pain. Basically, sex is important to me. I love it, and before vulvodynia, I had an unstoppable sex drive. If I didn't have vulvodynia, I'd be knocking Catfish down right and left, every day.

Sex is also important to me because it's part of how I work at conquering my vulvodynia. Having gone years avoiding sex out of fear and defeat, I am empowered by knowing the pain is not stronger than I am, and that I can have a real-live sex life. I've gone through some serious sex-averting flares lately, and it's made me cherish the times of lesser pain when I can embrace sex and reacquaint myself with my body and all its power.

Thursday, May 12, 2011

How to Give a Urine Sample

What I want to know is if people who work in medical offices ever do a trial run of the bathrooms they have patients give urine samples in.

The paper towels are on the other side of the room.

The towelettes are on the other side of the room.

The trash can is one of those mini ones with lids and/or it's on the other side of the room.

The shelf, if there is one, is on the other side of the room.

And there's no coat hook.

In every bathroom I've ever given a urine sample in.

You balance your belongings on the flattest, cleanest surface in the room and depants. You open the towelette, wipe with it, and then lunge, with your underpants down, to the other side of the room to throw it out. (This time, they had me wipe with THREE towelettes -- left, right, and center. Three lunges. A butt like J.Lo's.)

You lunge to the shelf, if there is one, or you lunge to the sink, or you reach around to the back of the toilet to get your cup. You screw off the lid, position the cup, pee into the toilet, pee into the cup, pee into the toilet, and squat there, letting the cup drip between your legs into the toilet as you plot your next move.

You screw the lid on the cup. You use the three fingers of your lid-holding hand that didn't touch the cup to roll off some toilet paper and sort of squish it around the cup to kind of wipe it off or something. You roll off some more toilet paper to wipe -- using all your fingers because now they probably all have touched pee -- and recognize that wiping yourself with the opposite hand from the one you usually wipe with is kind of weird.

Now you are dry and so are able to waddle across the room, underpants still down, to use the hand you think is cleaner -- probably the hand you didn't pee on while peeing into the cup -- to open the door to the little metal pee house where your pee will sit until the nurse opens the door on the other side to let it out. You see that someone else's pee is already there to keep it company.

You waddle to the sink and push it on using one or both wrists. You rinse, rinse, rinse out of consideration for the next person to use the soap dispenser before moving on to suds up.

Paper towels. Flush.

Pull up pants.

This is a contest with Deep Blue or the Jeopardy-playing computer: who can design the more efficient algorithm for giving a urine sample, a computer or a human?

Or, who can design a better bathroom for giving a urine sample, a human or a hamster?

Well, the hamster didn't invent the shelf.

Monday, May 2, 2011

Hacking Away at Life's Path

I've been home from my AmeriCorps service for four weeks now due to anxiety and depression. You'd think staying home from work that long would be awesome, but almost all of these days have been "real" sick days. But I've gone to my serving job on the weekends and I've seen my family and Catfish, so I'm still anchored to the world to some degree and I'm not broke yet.

Look, what I've realized is that 99% of the people I know (that statistic might actually be accurate) don't know what it's like to live my life. 100% don't have the same pairing of mental and physical problems that I have, and almost all don't live with the kind of anxiety and mood problems I have. So unless they have great empathy, other people don't understand why being home sick makes me feel guilty and erodes my self-image.

Guilt isn't a choice. It's part of the depression brain-state, and I'm sure there's some physiological element to it, and I've researched whether there are nutrient deficiencies associated with it, but I didn't find anything compelling yet.

Depression makes depression worse. Depression insists on itself.

I choose these situations like AmeriCorps because I think that I have to do or be something, and then these situations make me sicker. Every line I've toed out of a sense of "fulfill your potential" or "be something to the world" -- college, deskspace, grad school, and now this -- has gotten me nowhere. I still care about the people I was serving in AmeriCorps, and I learned a lot, but my ship is sinking.

I just don't fit into these situations, but I keep choosing them because I don't have examples in my life of people doing otherwise. This is how the world works for us humans. We do what we have a model for. We also do what the world around us values. I've known for a long time that if I want to be truly happy, I'm going to have to opt out of the standard, but I haven't done it yet because I don't have the social and cultural reinforcement to follow through.

I am starting to get really mad. Naturally, I feel guilty about being home and, from this point, would likely go back to my AmeriCorps service with my tail between my legs and fight through another 5 months until my term is up. Because going back is what the world around me values and what I have a model for. It would be easier for me to go back than to quit---

It's easy to break convention when you have a choice. When you don't have a choice---

Someone will probably get enraged at this analogy, but I will share it anyway: in elementary school, the other schoolkids and I didn't understand why Rosa Parks didn't want to sit at the back of the bus. That's where all the COOL (older) KIDS sat. Being forced out of life by illness is similar -- if you don't have the illness, you don't understand why not being able to uphold convention is so devastating.

So here's the fifth Monday I've been home, and I feel it's time to poop or get off the pot. I've made some progress in these weeks, but I know in my heart that if I go back, I will fall back apart. I could wait to adjust to new brain meds, or I could go back and try to rearrange everything to suit me, or etc., etc., but honestly, the only reason I'd go back is for other people. To avoid screwing them over, and to preserve my reputation. To toe the line and soothe the guilt.

Because no one is living my life, but everyone has an opinion on fulfilling a commitment. It takes a good amount of empathy to understand what someone else's life must be like, but everyone knows how important it is to follow through on what you set out to do.

There are two things I've learned over the past four weeks. The first is as I said -- that no one else is living my life, and that no one really knows what I go through. The second is that my life is actually really hard, and the only reason I don't think so is that thinking so makes me feel guilty. (Separate blog post on pain pending.)

Late last week I decided to quit AmeriCorps...and then seriously decided...and then really really seriously's hard for me to do. I hate to let people down, and I hate to acquire a certain image for (really, of) myself. But I remind myself that I can get all the benefit of my AmeriCorps experience by going back to volunteer with the organization I was at -- because obviously no one thinks badly of me there for being sick even though it makes me hate myself -- and that my first duty in the world is to take care of myself.

It's a big letdown for me. I've spent a decade wondering if I'll find a place in the world. I know it'll require thinking outside the box, so I'm reading a lot of outside-the-box things.

I have this book -- really, never returned it to the library -- called Manic Depression and Creativity. It chronicles the lives of Newton, Beethoven, Dickens, and Van Gogh through the lens of bipolar disorder. I try to draw on those stories, but they seem too extraordinary. Most of them worked with a fervor I can't sustain. I don't recall much depression outside of Van Gogh. Maybe they weren't bipolar but simply melodramatic. Is that true depression, or are you just a prima donna?

I stick to what is more accessible. My psychiatrist laughed when I told him I read Sylvia Plath -- why not (the optimist) Mary Oliver? Because for one, Mary Oliver's words are lame. Two, I don't understand Mary Oliver, geese and stars and sunrises -- but I understand Sylvia Plath. When she wrote
And I
Am the arrow,

The dew that flies
Suicidal, at one with the drive
Into the red

Eye, the cauldron of morning.

I know she was talking about what it was like to be a depressed mother. And that comforts me. To know that someone has felt the terrible colors I've felt. No matter that they destroyed her. They don't have to destroy me, especially if I figure out how to work them.