December 14, 2006 at 11:26 am (Uncategorized)

“Why haven’t you been writing?” a few people have e-mailed me.

The short answer: it hurts to type. The longer answer: it’s been a heck of a couple of weeks in chronic town.

Here’s the full version. As soon as the temperature drops below sixty degrees, every child in Montana seems to become a veritable petri dish of viri and bacteria. My pre-schooler is no exception and brings home every bug, which he kindly passes along to me. Because I have a compromised immune system, I have a hard time shaking off the colds and flus that come my way. My latest respiratory infection became entrenched in my sinuses. One powerful antibiotic proved unable to kill the thing off, so, for a while, I was on two doozies of drugs– Levaquin and Biaxin.

Just when I thought I was emerging from the land of the sniffely and the headached– and was thus feeling well enough to return to my daily writing– my sarcoidosis decided it had been neglected for too long and reared its very ugly head. On Saturday, I had a heart “episode,” as I like to call them, that left me sweaty, nauseous, and damn near on the floor. It passed, but was followed by some wicked chest pain. My first rule of thumb with such things is to ignore them and assume they’ll go away on their own (I also practice this, with a surprisingly high success rate, on broken appliances. You’d be amazed how many blenders and microwaves have fixed themselves when just left alone for a few days). Alas, my heart is not a blender, and the chest pain persisted and began to spread into my shoulder. I broke down and went to the emergency room, mainly because my friend Molly came along, so I didn’t have to go alone. (I refuse to drag my husband and son along on every one of these all-too-frequent crises.) It ended up being a not bad evening. Molly and I got to catch up and talk about books, and she was so nice about me ruining her Sunday evening that I only felt moderately guilty. Even better, the EKG and the chest X-ray came back normal – well, normal for me, which is only slightly abnormal. The doctor hypothesized that my chest pain was caused by prednisone withdrawal, since I am tapering off the drug. This made no sense to me, since I’ve been tapering away merrily for quite some time, and have yet to feel like I’m going to keel over.

Unfortunately, I also began to develop incredibly painful joint pain and inflammation. Moreover, my sarcoidosis specialist wasn’t satisfied with the prednisone explanation for my chest pain. She called my primary care doctor and ordered a smorgasbord of tests – various blood panels, CT scans, and an echocardiogram. My local doctor confirmed that my joints, particularly in my hands and feet, were visibly swollen. Maybe it’s the sarcoidosis popping up in my joints; maybe it’s a severe reaction to less prednisone; or maybe I have a new and exciting condition like rheumatoid arthritis. They can’t give me anti-inflammatories because those drugs are hard on hearts. So they prescribed percocet, which is basically useless for me during the day, since I am not going to take a mind-numbing narcotic when I have an almost-three-year-old to watch.

In the meantime, it’s hard for me to type, to hold a pen, and to press down on the clutch and drive. The bottoms of my feet and my toe joints are sufficiently inflamed that I am gimping around the house like I’m walking on hot coals. I’m overwhelmed and sad, and chronic pain only seems to exacerbate my overwhelmedness and sadness. In fact, I started blubbering in the doctor’s office yesterday. I don’t cry very much – and never in doctors’ offices.

My prediction is that this will end up being a tempest in a tea cup, that, most likely, my body is freaking out on less prednisone. However, knowing that it’s probably not a heart attack causing the chest pain or a strange new disease suddenly attacking my joints doesn’t make the experience any less frightening or painful. So, I do what we all do in chronic town. I wait and see, without a whole lot of typing or driving to distract me.

Permalink Leave a Comment

Put a Sock in It

December 4, 2006 at 12:58 pm (Uncategorized)

Over the past couple of months, my almost three-year old son, Andrew, has developed some bad habits. And like a good Americans, I’m going to blame someone else for it.

We’ve only recently begun to let him watch anything on television. For the first two years of his life, we were zealous about not letting his eyes come into contact with any flickering image on the cathode ray nipple. (Yes, I know, we are so very, very insane, but he’s our only kid, so we haven’t been forced to become less neurotic yet.) Then, a few months ago, we let him start watching construction “movies,” which my husband Jay quickly characterized as “dump truck porn” for the five and under crowd. Set to the same disconcertingly jazzy music of those XXX films (not that I would know anything about them), the thirty-minute videos show excavators , bulldozers, and dump trucks leveling hillsides and destroying serene patches of nature. One video even featured a series of hillsides and bridges being blown up by demolition crews. And then, it re-showed the explosions, in reverse, in slow motion. Let me tell you, it just doesn’t get much better than that. I’ll know who to thank when my son becomes an amoral strip mall developer denuding the Everglades or some forgotten meadow of the Rockies. “My dream to pave over the last remaining wildflower began when I was two and my Mom showed me exploding hillsides…”

Andrew’s exposure to things video widened with the addition of two Thomas the Tank Engine movies. Like most other small boys, Andrew is smitten with these train characters. (So smitten, in fact, that I recently shelled out $17 for a new engine.) Part of the allure of the Thomas cast is the various engines’ distinct personalities. For instance, Thomas is a good-hearted engine who wants to do the right thing, and usually does, but sometimes is tempted to do “naughty” things like roar past a warning sign and fall into a mine shaft. (He get pulled out.) Gordon, the Big Engine, has one main fault– his overweening pride, which sometimes leads him into a ditch or into trouble with the capitalist overlord of the railroad, Sir Topham Hatt. James, a red engine, has few redeeming qualities I can discern. Mostly, he’s rude and sassy and disobeys direct orders. Herein lies the problem.

In one of the movies, James is goaded by an equally obnoxious engine who he eventually tells to “shut up.” This quickly became one of Andrew’s favorite phrases. His second favorite comes from a children’s book in which one bratty character tells another to “Put a sock in it.” We read the story once, but the line stuck in my little boy’s head. Plenty of parents think saying shut up is no big deal. However, I was raised in a household where saying shut up was somewhat akin to telling someone to f*@$ off. It was very bad to say, and we were forbidden to do so. As unjust as I found this rule when I was a kid, itching to tell my older siblings to shut up, now I agree with the dictum. Ordering someone to “shut up” is the ultimate in dismissiveness and disrespect. Hearing it just makes my skin crawl.

I think it took Andrew about 8.3 seconds to figure out that I became angry when he said either “shut up” or to “put a sock in it.” Not that I was really subtle about it. “Go to time out!” I bellowed the first time he told me to shut up. “NOW!” I screamed, when he hesitated. Each iteration of shut up landed him in a corner, facing a wall, with his Mommy threatening to wallop him. And he kept on saying it. Over and over, sometimes telling me to put a sock in it for good measure.

The other night, somewhere in the middle of my second week in the campaign against “shut up,” Jay sat me down and said that perhaps Andrew would continue to employ these two hated phrases as long as he got such a splendid response from me. It must be fabulous for a two year old to realize he can make his mother apoplectic with two simple words. What a sense of power that must give him. I can just hear the gears in his little head revving, “I can make Mommy mad.” Jay suggested that I stop getting angry and just sort of nonchalantly embarrass Andrew into not saying shut up. “Make him think it doesn’t bug you,” Jay said, “And then tell him, ‘Wow. What a silly thing to say. When you figure out something good to say, come find me.’”

As much as I hate to admit it, it works. All of the sturm und drang is gone from the shut up exchanges, and I can almost visibly witness Andrew losing interest. Jay’s point is an excellent one – and one that might just keep our child alive until his eighteenth birthday. Sometimes, you have to just let things roll off of you.

Typically, I’m not very good at going with the flow and such forth. But our success in the great Shut Up Wars of ‘06 made me think about other areas of my life when chafing at something isn’t necessarily the best strategy. For instance, what if I tried to give in to my illness a little bit, instead of constantly fighting it every day? What if I admitted I was sick, and not able to do as much as I’d like in any given day? Would my sarcoidosis – like Andrew’s incipient foul mouth – become less ominous and threatening if I let it roll off me?

Fortunately, I didn’t have to wait very long to have the opportunity to test my theory. The change in the weather has brought a host of respiratory infections to our town, and I was first in line to catch one. My cold quickly turned into a sinus infection that landed me in bed on high doses of antibiotics. “I’m just going to be sick,” I told myself. No forcing myself out of bed to find the Christmas and Hanukkah decorations. No dragging myself to the Historical Society to take notes on an oral history for an upcoming article. I even stayed home from a friend’s birthday party that I was dearly looking forward to attending.

Did it work? Did my sense of sickness lessen once I stopped haranguing myself to get out bed and go to the gym? In a word, no. There are few universal rules of life. What works for the toddler’s vocabulary does not necessarily work for the thirty-five year old with chronic sarcoidosis. All I did was get really, really depressed. I read a lot of novels, and got depressed by those. I read news stories on my laptop in bed, and got depressed by those. Staying home alone, in bed, with little impetus to shower or go to work – succumbing to sickness, in other words – made me feel like I was living in a dark trough somewhere.

I decided yesterday to tell my sinus infection and the underlying sarcoidosis to put a sock in it. I got out of bed, bathed, and took Andrew to the library and then out to the bakery for a cookie. We played a mean game of “I Spy” as we shared the cookie and noticed all the fascinating cars on the road (sadly, no explosions, in real time or slow motion, though). Then we had dinner with new friends. I was still sick, but, hey, Kleenex is portable. I felt alive and, better yet, Andrew didn’t say “shut up” the whole day.

Permalink Leave a Comment

Zero Degrees

December 1, 2006 at 12:46 pm (Uncategorized)

There’s nothing quite as bracing as winter in Montana. For most of the week, the high temperatures hovered around zero or the single digits. When it hit twenty yesterday, it felt positively balmy. Or so Jay said. I wouldn’t know because I’ve been stuck in bed, sick. My only interaction with the weather has been watching the wind through our bedroom windows, and hearing the heat running constantly, trying to keep our drafty house warm.

I love winter. I know plenty of people who have moved to Montana because of all the delights the summers here bring: daylight until nearly ten o’clock at night; hiking and mountain biking trails wending out their back doors; rivers chock-full of fish and ready to be kayaked or simply floated in an intertube; almost zero humidity so even the hottest days are (just about) bearable.

All well and good, but winter is what drew me here. I lived in California for several years before we came to Montana, and I was sick to death of nice weather. There’s only so many days of perfectly blue skies and perfectly temperate weather I could take. I felt like I was choking on the routinized perfection of it. It felt like the earth had visited a Hollywood plastic surgeon and gotten all the extraneous cold and gloomy days snipped off.

For me, winter is when the world bares its soul. The foliage falls to the ground and you see the outline of things as they really are. The skeletal trees show their shape, and the line between earth and sky that seemed so pronounced in summer now blurs with the first snow. Where exactly does the white and grey ground blend into the white and grey sky?

I find that winter anchors me to the earth in a way summer never will. You notice the bite of the air, the scouring of the wind, the very presence of an atmosphere that is greater and more powerful than we are. There is much less of a chance you’ll disregard the sky and the wind in winter. Five minutes in Montana cold is a humbling experience. The wind sucks your breath out of your mouth and lungs and carries it away; the wind chaps your face, your hands, any bit of you left exposed to it. Your glasses freeze to your face, and the passage of air through your nose feels almost acidic there is so much bite to it. With every footprint squeaking against the frigid snow, you cannot move silently against the earth.

Maybe I love winter so much because I spent part of my childhood in northern places. When I was very young, my family lived in Norway. I have few specific memories of my time there, but maybe the cold got into my blood and into my soul. Later, we lived for four years in upstate New York, just a short distance from the Canadian border. Some of my fondest memories are of cross-country skiing in the dairy farmer’s empty field down the road, and of returning to shake hunks of ice from my hat onto our pot-bellied woodstove and watching them sizzle and evaporate.

Winter is a time of withdrawing from what is frivolous and unessential. Everything living goes underground and takes stock. If you listen closely enough, you can almost hear the rustling of the plants and the animals, the bugs and the birds, as they move beneath the crust of the snow, gathering up enough strength to re-emerge come spring.

I hate being bed-bound during our first cold snap. By the time I have recovered from my current bout of sinus infection and bronchitis, it will be above freezing — or so says the weather forecast. I feel like I have missed a chance to scrub off a layer of the year’s grime and dirt by playing in the arctic wind and snow. I want to get up and take Andrew outside and teach him how to make a snowman, how to fall into the snow so that you can make a snow angel with minimal smudging, how to dig down beneath the frozen crust of the snow to find the fresh powder that is good for eating.

But, I suppose that, like the small animals that retreat below ground with the onset of cold, I don’t have much choice in determining when I too must hibernate, when I must strip down to what is essential. It isn’t the snow and the bitter bite of the wind that take me down; it is sickness. But there is plenty of winter in that, as well. And who knows what will emerge from what the sarcoidosis has laid bare.

Permalink Leave a Comment