Picture Perfect

November 22, 2006 at 11:39 am (Uncategorized)

For the past couple of days, I have been conducting a little experiment on myself.

My mother-in-law, Roslyn, is visiting us from Boston. Although she has met us in other cities since her last trip to Montana, she has not been in our house for about two years. Before she arrived, I desperately wanted to mellow myself out. I planned to cut back on the fussing and cleaning I do for all of our guests, including my own parents and my closest friends.

My goal in this endeavor was not to be inhospitable to my mother-in-law, who is a kind and generous woman and who we love having visit us. What I wanted from my foray into the experimental method was to see if I could host someone without making myself exhausted, sick, or frazzled. Before I took up residence in chronic town, I relished making visitors feel welcome. I was taught that by the time you open the door for your guests, the house should be clean, the bathrooms stocked with extra toilet paper and soap, the sheets crisp, and the cupboards loaded with good food. In addition, you should make a tasty dinner every evening, and have the fixings for breakfast and lunch on hand. If you know that your guest likes, say, grapefruit instead of orange juice, then you’d better have a container of grapefruit juice for breakfast. You should also spend time with your guests. After having them travel across the country (or in the case of our friends from Thailand, the world), you don’t leave them bored in your house while you’re off having lunch with pals or taking a nap.

Here’s the problem. Now that I’m in chronic town, when I do all of this stuff, by the time the visit’s over, I resemble the living room rug more than a human being. My sickness has not made it impossible for me to be the kind of hostess with the mostess I want to be. I can still mop the floors and plan outings, but it totally and completely wipes me out. I have nothing left – and I usually get sick.

Since Roslyn has explicitly told me on numerous occasions not to fuss over her or feel like I should give up a nap for a tour of our town’s historic district, I decided that her current visit would provide the perfect opportunity to order pizza for dinner one night, or to leave her playing with my son while I rest. I would take someone at face value, damn it. If she said, “I don’t mind if we don’t have a home-cooked dinner every night,” then I should listen to her words – instead of to the tired drumbeat of guilt in my head – and put Dominoes on my phone’s speed dial.

I’ve done a better job not fussing than I normally do with guests. Thanks to my sister’s generosity, the housecleaners came before Roslyn arrived, so I didn’t have to worry about toilets looking like breeding grounds for a new and vicious life form. Although one evening when I was not feeling particularly well, I broke down and made lasagna (one of the more labor-intensive casseroles known to mankind), the next night I did consent to re-heating the leftovers for dinner – and to letting her do the dishes. This is major progress. We’re also spending Thanksgiving with friends, so the entire burden of cooking the requisite feast won’t fall on me. And one afternoon, I headed upstairs and napped for most of the day to stave off the cold Andrew is spreading throughout our house with his dripping nose and hacking cough.

When I was about to fall asleep that afternoon, however, I was seized with terrible anxiety that bordered on panic. It felt like I desperately needed to up doing something, not lying a-bed like a slug. Rationally, I knew I was being ridiculous. But my gut was twisted with guilt. “Do more. Do more. Do something,” I thought over and over. I forced myself to let this pass, and it did. But the episode was intense enough to make me mull over it later. Why would I feel compelled to disregard someone’s words (“Go and take a nap, Rebecca”)? More importantly, why did I feel repulsed that I would even consider putting my needs ahead of someone else’s? What is with this all this guilt?

I didn’t come up with any answers, but I did realize how intertwined guilt and my illness are. The two nourish each other like twin parasites on my body and soul. I so often feel guilty that my ongoing health problems prevent me from caring for my family as I want to. And I feel guilty for putting the people I love through so much worry and upheaval. But I’m coming to realize that by continuously pushing myself, by making the damn lasagna and shopping for grapefruit juice, I am giving fuel to the sarcoidosis in my lungs and heart. I know when I need to stop and rest, but too often, guilt causes me to stand at the stove or wake up early with Andrew.

Change takes a long time. It will take more than one visit for me to learn to loosen my grip and let go of wanting my life to seem picture-perfect. Admitting that I can’t do it all involves publically accepting that this illness has limited me — at least temporarily. I can feel guilty about this, or I can see in these new limits an opportunity to expand myself in other ways, to learn to take care of myself for the long haul. Hello, Dominoes?

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Kate the Cat II

November 16, 2006 at 3:02 pm (Uncategorized)

Our diminutive orange tabby returned home yesterday. She is scrawny and looks unwell, and the veterinarian was less than optimistic about her prospects. “I really do think it’s lymphoma,” he said. “But we’ll just have to wait and see.”

Wait and See is a concept I typically hate. Call me impatient, but I like to know what the hell is going on. Now.

So I was a little surprised with myself last night when I was content simply to have Kate out of kitty intensive care and back in her rightful spot mysteriously occupying most of a king-sized bed, even though she only weighs about four pounds now. Not as surprised as I was on election day when the Democrats somehow managed not to snatch defeat from the jaws of victory and lose various races that a turnip could have won. But surprised nonetheless.

I worry about Kate, but I don’t feel a crushing need to find out what is wrong with her and how long she might live. I turned down the option to have a costly (and potentially fatal) biopsy of her intestines performed to determine exactly what ailment she has. By doing so, I effectively took away the future option of filling her veins with approximately $6,000 worth of chemotherapy drugs. In essence, I decided to Wait and See. What the heck is wrong with me?

I attribute my nascent ability to cope with uncertainty ( I am, perhaps, exaggerating a tad; “cope” may be too strong a word – maybe I should say “I attribute my nascent ability to not dissolve into a puddle of neuroses and assorted human tissue when confronted with uncertainty”) to living in Chronic Town for two years. When I was first diagnosed with sarcoidosis – and then a couple of months later when the disease appeared in my heart – I spent most of my waking hours trying to determine: 1.) Why I contracted this illness; 2.) How it could be completely eradicated; and 3.) What exactly my prognosis was in the short, medium, and long terms. I wanted definitive answers. Now. And when I couldn’t find them, I became nervous, depressed, and prone to spending way too much time on the Internet trying to decipher jargon-filled medical journal articles on sarcoidosis published in the 1970s.

As anyone with a chronic illness – ranging from sarcoidosis to MS to lupus – will tell you, there are no definitive answers when you move across the bridge into Chronic Town’s zip code. My specialists’ favorite phrases are “I don’t know,” “We’re not sure,” “It could be that…,” “It seems likely that…,” and “Nobody knows whether…” This drove me absolutely nuts. I wanted the same formula that works for strep throat to apply to sarcoidosis. Give me a pill, and make this go away forever. Well, the doctors weren’t even sure if the pills they were administering would help my condition; then there was the concern that patients with sarcoidosis who are treated with prednisone are more likely to relapse; and then there was the wee matter of the pills making me unhealthier in more ways than the sarcoidosis had done (except for the pesky risk of dropping dead of a heart attack one day). My doctors also couldn’t tell me what I most wanted to hear –  that I would live to see my son graduate from college, that I would live to hold a grandchild, that I would live to have the privilege of growing old with my husband. For every question I posed, all I got back was a giant question mark, which seemed to mock me with the smile-like curve of its shape.

I’m not sure when I started letting go – ever so slowly and painfully – of my need to get answers about my disease. Part of it, I know, was simply becoming too exhausted to think about it anymore. I am living proof that people can actually become tired of hearing themselves think. Then there was the matter of the anxiety attacks brought on by reading mortality statistics about my manifestation of the disease (or better yet, the day I looked up cardiac sarcoidosis in an obituary database). I realized this wasn’t helping anyone’s health, including my husband’s and my son’s. I also spent a lot of time reading about people who live successfully in the face of chronic illness. The underlying theme I kept encountering in these books was that people overcame their diseases not by focusing on long-term issues, such as, whether a treatment will work fifteen years from now, but by concentrating on every day and making the most of the minutes at hand. And, finally, there’s a glass of wine with dinner – good for the heart, good for my nerves.

I struggle with these issues all the time, though. (That’s where the glass of wine after dinner comes in.) A couple of weeks ago, someone had the misfortune of pointing out a connection between an insecticide and cancer, and then wondering if there was a similar correlation to be found with sarcoidosis. I didn’t yell or get overtly angry, but I sure did become stonily silent. I have found that pondering these etiological questions of my illness only makes me grumpy and feel persecuted. I tend to go far too easily into the Land of the What-Ifs: “What if I had never accidently sprayed myself in the face with the dog’s flea treatment? What if I hadn’t gone to high school in the shadow of oil refineries? What if I hadn’t drunk gallons of Diet Coke in college?” Once you start down this line of reasoning, it’s awfully hard to stop.

I have strayed a long way from Kate. I don’t know how many more weeks we’ll have to spend with her. But, as people wiser than me like to remind me, in matters of life and death, we never have any guarantees to start with. So, I plan to spend some time enjoying Kate, and the vibrancy and joy she brings to us – not to mention her incessant howling to be let outside – rather than worrying what will happen in four weeks. As the protagonist in one of Andrew’s favorite books, Gift Bear for the King, (which I also read as a child, but somehow managed to miss the moral message contained in it) says, “What will be, will be.”

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Kate the Cat

November 14, 2006 at 12:30 pm (Uncategorized)

It never ceases to amaze me how quickly things change.

Over the weekend, our four-year old orange tabby cat, Kate, went from being perfectly healthy to probably having cancer and possibly not living to see the end of the week. In the grand scheme of existence, a cat’s life is insignificant, but I still feel as though we’ve been bludgeoned.

Kate came into our lives when she was only a few weeks old. We were living in Palau, an island nation in the middle of the Western Pacific. A friend found Kate and a few of her siblings in the jungle behind her apartment. I have always been a sucker for homeless pets, so it didn’t take much convincing to send me home with this tiny bundle of stripes, oversized ears, and a crooked tail. Apparently all Palauan cats have a genetic mutation that causes them to have crooked tails. Before I learned this, I was outraged at the number of kitties on the island with broken tails. I assumed this was because cats were near the bottom of the hierarchy in Palau. People tolerated dogs, but weren’t too fond of cats, so the felines were chased (and often killed) by packs of dogs. I was relieved to find out that Kate’s imperfect tail was the result of inbreeding, not cruelty.

Kate is the spunkiest cat I’ve ever encountered. She fears nothing. We’ve caught her stalking deer in our yard; when a strange dog shows up, she attacks it. With other cats, she is ferocious and defends her territory with a savagery that is disconcerting. The funny thing is that for someone so tough, Kate is awfully small. She usually weighs about five pounds, although she puts on a couple of ounces in the winter to withstand the cold. And while she hearkened from a tropical climate, and never has liked the snow, she has always insisted on being let outside, no matter how crummy or icy it is. She has made it abundantly clear that if we try to keep her inside, she will make our lives miserable. She climbed up our chimney and returned a couple of days later covered in soot, when we attempted to make her an indoor kitty because we lived near a busy road. Once we blocked off chimney access, she learned to crawl into our ceiling. When our friend Molly kept her for us for a couple of days when we were out of town, Kate somehow wormed her way into Molly’s walls.

When I became pregnant with Andrew, we assumed that Kate would try to kill him once he was born. If she finds another cat threatening, we reasoned, she would probably attempt to smother a human rival. She surprised us, though. She did snuggle with Andrew in his crib, but lovingly.  She became the our son’s first friend. She follows him around the house, plays hide-and-seek with him in our weedy yard, tries to distract him when he is crying, sleeps at his feet (or next to his head) almost every night, and endures an inordinate amount of roughness from him and his toddler buddies. At Andrew’s second birthday party, we looked over to see two kids wrestling over her. One held her head, while the other tugged on her rear haunches. She never scratched them. Andrew has pulled her tail, vigorously patted her head, and “accidentally” stepped on her paws. She has scratched him exactly one time — and that was only in the past week when she must have begun to feel crappy.

Right now, Kate is at the veterinary hospital getting intravenous fluids because she can’t hold down food or water. The vet (Dr. Keith) isn’t sure if she has a kitty version of lymphoma or irritable bowel disease. We opted not to have Dr. Keith biopsy her intestines to determine if it is indeed cancer because he felt the operation might kill her. And if we were to learn for sure that she has cancer, all we could do is begin chemotherapy.  But we’ve elected not to do this because the drugs would cost us thousands of dollars, only keep her alive for about six more months, and require us to confine out free-spirited kitty. So instead, and oh this is ironic, Kate — like me — is on a prednisone regimen to decrease the inflammation in her bowels. Our usually cheerful vet is being decidedly quiet on her long-term prognosis.

Kate is a small jungle cat. When thousands of people die everyday because of war or unclean water or from simply not having a proper mosquito net, it is hard to make too much of her illness. But we love her. She has added a richness to our life, as well as made Andrew appreciate the value of animals. She reminds us every day of Palau, a place we hated leaving and still mourn losing. Her feistiness has taught Jay and Andrew and me something about approaching obstacles: act like you’re a saber-toothed tiger when you’re only a five pound cat (with ears accounting for a fifth of that weight); always assume the humans want to let you in and out every three minutes; and never overlook the value of a warm bed.

I don’t know what will happen with Kate, but I miss her already, even though she is just at the vet’s. I keep seeing her out of the corner of my eye, and last night, I could have sworn I heard her yowling at the door for us to let her in. I miss seeing her crooked tail bobbing above the weeds as she lures Andrew into a game of hide and seek in the back yard. I hope the prednisone works. Get well, Kate. Come home soon.

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Lemon Head

November 13, 2006 at 1:15 pm (Uncategorized)

My head has not been a happy place to be during the past couple of weeks. I feel like I am peering at the world through thick fog. Everything makes me sad, or angry, or sad and angry. My almost three-year old son, Andrew, frays my patience, and the way my husband, Jay, chews his cereal in the morning makes me nearly homicidal. I don’t want to work. I don’t want to exercise. I don’t want to spend time with my friends. Pretty much all I want is to be left alone, preferably in bed, with a stack of trashy magazines and a good pillow to support my sore neck.

Yesterday was a particularly bad day. I somehow directed all of my negative energy onto my husband. I was furious with him the entire day. I picked fights with him over insignificant things. I plotted leaving him and Andrew behind and launching a new life in a small and exceedingly quiet apartment. But forced to remain in our cluttered and loud home, all I could do was glare at my poor husband with cold fury – when he didn’t wring out the sponge, but just tossed it in the kitchen sink, bloated and sodden, to mold; when he did the dishes but didn’t sweep the floor; when he suggested we not buy the tangerines for six dollars at Safeway since they had been four dollars at another store. That last one was the clincher. I stalked out of Safeway so angry that I felt light-headed. “The bastard. How dare he try to control me!” I thought as I started walking up the cold, dark streets towards home. I didn’t even feel guilty for leaving him behind with Andrew when he was sick.

I don’t want to overwhelm you with details from my personal life. I’m not relating this decidedly not-so-pretty episode to extort sympathy. But when I started this blog, I had one overriding goal: to be honest about what life is like in chronic town. When you become chronically ill, you cross over into a world that has all the trappings of the one you’ve left behind. It is inhabited by the same people; you reside in the same place; you pay your bills, fret over your child’s bad behavior, watch the same television shows, and run the vacuum in the same patterns over the same carpet. But everything’s different. Once you become sick, you’re never quite the same person (nor are the people in your life who love you). And this creepy Twilight Zone sensation can make you feel absolutely nuts. In writing this blog, I want to say what other folks in chronic town think to themselves, but don’t quite have the space to speak.

Here’s what’s making me feel crazy lately – I’m getting well, yet the prednisone taper is making me feel physically and mentally ill. My joints ache, and I am more tired than I’ve been since I was diagnosed with sarcoidosis and put on prednisone. I had never realized what false energy that demonic drug gave me. But now that I’m physically withdrawing from it, I am fatigued to my core. I can sleep ten hours a night, and still need a two-hour nap in the afternoon. But worse than the physical discomfort, is the hellhole my rational mind has devolved into on less prednisone. It’s like a constant case of PMS amplified to the Nth degree. Everything makes me angry. Being angry makes me angry. My jaw is permanently clenched in an effort to prevent the bile and vitriol of my mind from spilling out of my mouth. I hadn’t even realized that the decreased dose of prednisone was impacting my mood until my doctor mentioned it. Then it was like one of those cartoon light bulbs went off. “Oh, so that’s why I want to kill everyone I know,” I thought to myself.

However, I do know the moodiness will pass, as will the aches and pains of my body readjusting to life sans corticosteroids. But the ongoing fear and anxiety are another thing. When I was first diagnosed with cardiac sarcoidosis and had a barrage of bad news flung at me every few days, I didn’t really have the time to think deeply about how messed up my life had become. Jay and Andrew and I lurched from crisis to crisis, from major medical center to major medical center, and we did rather well keeping our lives relatively normal and calm. Now we are home for a few months, and there are no medical bogeyman looming on the horizon. We have time to think. We have the energy to process things. We have the space to worry about me getting sick again. And it’s freaking awful.

Now that I have had good medical news, I am terrified of relapsing, of letting health slip through my fingers, and returning to a more doomed landscape. I pay attention to every flutter in my chest, and analyze the nature of every ache in my body. Is this different? Is this worse? Should I call my doctor? I don’t want to fret about things that are inconsequential, but I’ve been warned to be vigilant about cardiac symptoms – especially if they seem to worsen on a lower dose of prednisone. But over-awareness of every skipped heartbeat will turn me first into a hypochondriac and then into a puddle of fear-scented jelly on the floor. I certainly don’t want to have one those euphemistically named “cardiac events,” but I can’t call in every pain and palpitation in my chest. I’m new at this, and I have yet to learn how to strike a balance.

I am lucky that I am not alone on this path – even though I sometimes convince myself I am, or that I would be better off without my husband or son to accompany me. I know that other people with chronic illness have been less fortunate than I when it comes to their partners’ responses. One woman with multiple sclerosis and assorted other health problems was genuinely surprised that Jay hadn’t left me yet. Her husband jumped ship a scant year after her diagnosis.

Truly I don’t deserve Jay to be as good to me as he is. He let me stalk out of Safeway with smoke blowing out of my ears. He covered for me with Andrew, telling him that “Mommy just needed a little extra exercise tonight.” And then he came and found me. Just when I began to notice that it was 38 degrees with a slicing thirty-mile-an-hour wind and I was wearing only a think fleece pullover, the blue Subaru pulled up behind me. When I opened the door, Jay handed me a bunch of brilliant yellow tulips. “I know things are very hard for you now,” he said. “And I’m not sure what I’ve done to make them worse, but I am sorry. I want to help you feel better.” Andrew chimed in, “Look at your beautiful flowers, Mommy.” I promptly burst into tears, and sobbed and gurgled and dripped snot onto Jay’s arm as he held me. “It’s going to be OK,” he said over and over. Andrew apparently thought there was something very wrong with the flowers he had helped select because he kept telling me how pretty the tulips were. They were indeed.

We came home and made pizza. Andrew asked if he could have my flowers and became grumpy when I suggested we share them instead. Jay and I didn’t talk about the specifics of my meltdown, but I felt better nonetheless. Crying is cathartic. But so are yellow tulips opening on a winter evening. So is the face of someone you love. And so is the thought of getting well, however slow and difficult that might be.

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Flu

November 7, 2006 at 1:03 am (Uncategorized)

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“Anything you can do, I can do better,” are lyrics from an Irving Berlin song in the 1946 musical Annie Get Your Gun.

Nice, but I’ve come up with my own, much more compelling version. “Any disease you contract, I can contract more virulently.”

Now I admit, you have to rush the words in my reworking. But Steven Sondheim gets away with this type of musical blabbering all the time. I think I have definite potential. If this writing gig doesn’t work out, maybe I can launch a second career as a lyricist. Rebecca, Get Your Flu! might just be the Broadway hit of 2009. Or maybe, You’ll Visit the Toilet So Many Times You’ll Really Want to Get Your Gun – And Blast Your Head Off!

It’s been a rough week. As I’ve already explained in song, I caught a 48-hour stomach bug from Andrew, and, in my immune-suppressed condition, turned it into a seven-day extravaganza of diarrhea, high fevers, and full body aches. Looking on the bright side, I lost a few pounds of prednisone weight. And I also got to examine the floor tiles in our bathroom for extended periods of time. Plus, I learned some interesting tidbits about human digestion. Apparently, your body can liquefy anything it chooses to. Very quickly. And painfully. It can even liquify water, which is already a liquid. Go figure.

A flu is just a flu. Everyone loses time with stomach bugs and head colds. I should stop feeling sorry for myself and begin to venture more than a few feet from a toilet. But I’m sick of being sick. When a friend asked me how I was doing, I realized exactly why the latest round of microbes have made me so grumpy. It’s because every time I get sick, I lose momentum. Right as I feel like I’m getting into the swing of things on writing projects, dinner party plans, exercise, and activities with Andrew, I hit a big brick wall of illness and WHAM!, I’m on my ass for a week or so. Then I scrape myself off the wall, much like Wile E. Coyote reinflates himself after inadvertently flattening himself with his latest Acme invention intended for Roadrunner. I start running again, picking up momentum. All is well for a couple of weeks, and then WHAM!, another brick wall.

This is life on prednisone. This is life with an auto-immune disease. Even if I stopped taking prednisone tomorrow, supposedly its immune-suppressing properties would persist for about a year. So I guess I’d better get used to it. I might as well sing. “My lungs are alive with the sound of granulomae…” set to the tune of “The Hills Are Alive” from The Sound of Music.

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