Sunday, December 23, 2007

Martyrdom: The strange side effect of a glutening.

I'm learning, slowly, what a gluten exposure really looks like. Not the big shebang. That's obvious, and painful, and I get through it because I recognize it quickly for what it is. But the little, insidious glutening that occurs when you walk through a bakery and can almost taste the sweet poison. When you help a child decorate a gingerbread house, made with real gingerbread. When you sit down and play with the playdoh, too, and forget to remind the kids to scrub their hands afterwards.

At first, it's not much. I think "Oh, I hope I don't pay for that later!" hold my breath, and go about my day. Later, I may notice an upset stomach. But, I can deal with it. Maybe some itching. Again, I can handle it.

I find myself thinking, "Maybe I'm coming down with something." And maybe I am.

I'm tired. Not sleepy. But I don't relate it to gluten. I just feel lazy. The only connection I make is when I find myself craving gluten, and tell myself (and sometimes my husband) that I'm lucky. Mild stomach issues, and a bunch of cravings. I can handle this. I hope it passes soon.

I go to the grocery store. I feel overwhelmed. I don't feel like cooking, what can I get for the kids?

I buy gluten. The bread looks tempting. I can avoid it, easily. We'll watch for crumbs. Oh, and look at those scones. My youngest will love them. I'll get frozen dairy free pizza for oldest, she deserves a treat. I'll be careful with which pans I use. Crackers. Those look good. Oh, lets get a bunch. I'll just vacuum the living room carefully. They'll make a good snack.

And I go on. At the check out counter, I realize I have cashew butter, eggs and a bunch of food for the rest of my family. Huh. Well, no matter, I don't feel like cooking. I'll eat "something". Next time, yes, next time I'll be more organized.

Except that soon, there are crumbs on the counter that I don't feel like chasing down. I'm scatterbrained and cranky. I'm behind on the dishes. I make their dinner, and while they eat I carefully prepare mine on an ever shrinking "clean space" to avoid gluten or corn contamination. They can't help because the risk of gluten cross contamination rises, so they grumble. I think, again and again, that they are suffering because of me. The more gluten there is in the house, the harder it becomes to keep things clean. More than once, I toss the entire silverware drawer into the dishwasher because someone reaches in with a contaminated hand.

I start to feel like this is my job, to let them be "normal" and just work harder. I can manage with just a little extra work. I can avoid crumbs. I can live with an occasional, mild reaction. I'm better now, so much better than I was. And it's true. I am.

Slowly, I feel more overwhelmed with less stimuli. I lose my ability to step back, smile and say "Wait a minute, one at a time." We run out of bread and I panic. What will the kids eat? I have a bad day, a stay at home kind of day, and chalk it up to IBS. And stress. Because, of course, it really all boils down to stress. Didn't the doctors spend years telling me it was stress? I guess they were right. Look at the superhuman measures I've been taking to avoid eating the wrong food. To avoid cross contamination. It can't be gluten. It can't be corn. And yet, here I am, with this knot in my stomach, and the swishing crampy nausea. It's stress, probably from trying so hard to avoid the wrong foods. Yes, that's it. I need to adjust. Whats wrong with me? Why aren't I used to this by now?

And then, I get a hive or two. At first, I say something bit me. Then I call it a rash, or a pimple (pimples probably aren't supposed to itch and ache like crazy, or go away when you take Claritin D12, but I ignore that fact for now.) And then, I wonder why life got so stressful.

The kitchen comes into clearer focus. My daughter hugs me with gritty, gluten-crumb hands. Hands that hit right where the rash or pimples are cropping up.

And truth slaps me in the face. It's the gluten, you idiot. It's everywhere, there are crumbs on the sofa, on the kitchen table. What have the kids eaten recently that you weren't allergic to?

A sense of de ja vu strikes. I know this feeling, this moment of realization. It happens 2 or 3 weeks after a mild glutening, when the symptoms are mild but persistent, when I think I'm fighting off an infection. When slowly I let the danger foods creep into my kids diet, and I tell myself that I have to. I have to let them eat that stuff. I can't afford to feed them my safe foods. They won't like my foods as much, and its so much effort. I stop coking much for myself, because I'm busy keeping them fed with convenience foods. (Ironic that they seem to take up so much more of my time than cooking whole foods)

It's not that much effort, by the way. And they love a variety of foods that I make safely for everyone. But once in awhile, when the gluten gets me down, I let the doubts creep in. A mild depression settles in, accompanied by brain fog. And I become the martyr.

It's time to scrub the counters, clean out the cupboards, and regain control of my life. Because I'm not a martyr. I'm a mom. I can't be a good mom if I'm only 60%. And part of parenting involves teaching the kids family cooperation, how to participate in planning and preparing meals, and budgeting skills. A minimal gluten house won't hurt them.

But a glutened house certainly hurts us all.

Monday, December 17, 2007

A little bit of Sympathy

My daughter is 9. She's allergic to dairy. It's not serious, but its uncomfortable and her suffering seems lengthy, so we avoid dairy like the plague. She's also allergic to blue dye (Well, not technically, but it gives her a migraine) so there are few "regular" treats that she enjoys.

Last week she told me that school was unfair, and she hates parties. Apparently, they regularly serve popcorn for treats, there have been birthday parties she couldn't participate in, and now a pizza party was being planned.

For the first time ever, she's feeling isolated in school. My heart bled for her, as I asked what she needed.

I reminded her the teacher knows about her allergy. She nodded.

I reminded her, gently, that we couldn't ask them to provide safe treats for her, specifically. I don't trust them to label read. She knows, she says, she doesn't care, really.

I told her we couldn't ask them to stop having parties, and she told me I was crazy, she doesn't want them to stop having parties, either. (This, I admit, confused me since she hates parties)

I asked about sending a safe treat for her to keep on hand. She shook her head.

I held her for awhile, just trying to comfort her. And then she looked up at me, tears glistening in her eyes.

"I just want the teacher to know, mom, I want her to know I have a dairy allergy. And I want her to say 'I'm sorry, you can't have this tomorrow, but maybe you can bring your own treat.' Then I'd feel better."

Just a few words of sympathy, acknowledgment. Its often forgotten in our rush, in our knowledge that people understand a situation is unfair. And yet, somehow, it can go a long ways towards lightening a burden.

Wednesday, December 05, 2007

The Gift of Guilt

It's that time of year again.

We drive down the street amidst sparkling multicolored lights, inflatable santa's wave cheerfully in the wind, and in the stores lines wind around bright displays of tempting last minute "perfect gift" merchandise.

I love this time of year. I love the lights, the sounds of carols, and the scent of holiday baking. I love the chill in the air (as long as I don't have to be out for too long) and like most people I start longing for the taste of my favorite treats. Unlike most people, I will be making any (and every) thing myself.

Like many people out there, I have food allergies. Of course, if you're reading this blog you already knew that. For some reason holidays can be the hardest. This year, I'm simply grateful for the opportunity to eat a small variety of treats. I'm working on expanding my diet (carefully testing a few new foods. Hoping I can tolerate tomato now, or maybe some nice pinto beans. Not exactly holiday themed, but they do add to the menu.)

I'm also reading up on posts from various forums, and thinking back on years past. Sprinkled throughout the anticipatory ramblings of some members is always a thin, but constant note of dissent. Some people dread the holidays.

And it isn't because they don't like carols, or the festive mood. They don't seem to dread the lines, or wrapping gifts or even shopping. The most voiced complaints? Generic gifts.

It's not that these people are ungrateful. The comments are almost always made in the midst of a post about "what should I get for this person I don't know very well, but really want to remember for the holidays this year." They're softened with the sentiment that "it IS the thought that counts..." but, well, there is that BUT.

Perfume, bath lotions, fancy body lotions and food are some of the nation's favorite "I really don't know you...but you're human, so enjoy" gifts. Popular for teenage nieces and nephews, for long lost cousins and that coworker you've never really seen but know is lurking behind an office door, these items are loved by many. (At least, one presumes that they are enjoyed by someone, since they sell so well.) But they are also very personal items. And there are many giftees who become emotional on the subject.

It's not that they think the giver is inconsiderate. Or even that they take the gift to mean "Here, have a batch of hives and a trip to the ER for Christmas!" They know that it's the gift that counts. They appreciate the thought, time and cash that this tacit remembrance cost. The real root of their complaint seems to be the underlying guilt associated with not being able to appreciate it. Or even to explore a new, potentially exciting product. And, deep down, the strong desire to enjoy it, as the giver most likely hopes they will.

People know that its not the gift that counts, but sometimes the thought means much more than a package. Some people would truly appreciate a card much more than a plate of homemade brownies (especially if the receiver is allergic to nuts and the brownies are studded with pecans.) And frankly, some givers seem intent on simply providing shiny paper and lots of bows. The receiver is little more than a name on their list. In some cases, its fine. But when you know someone won't be able to eat the popcorn in the popcorn tin its just a waste of money and energy to wrap it up for them. Saying it's the thought that counts won't change that. In fact, when one intentionally hands another person something that they already know won't be enjoyed by the receiver, the thought comes through loud and clear, and not the way one hopefully intended.

This year, I hope we all avoid the gift of guilt. But of course, it will lay there under the surface. All we can do is try to muster enough holiday spirit to drown that wave of disappointment when we're handed something we can't eat (or touch, or even open) for safety's sake and remind ourselves that we didn't ask someone to go out of their way for us. Try not to feel guilty, because we are human (even if we don't enjoy Aunt Mary's secret recipe stollen or neighbor Ginger's famous sugar cookies) And so are they.