Friday, April 27, 2007

Who Me, Worry?

“If I stopped and worried about everything that’s wrong with me, all the possible complications and outcomes, I’d never make it through the day. So I don’t. For better or worse, I just push through it,” my father said recently.

For the record, the man is a walking catastrophe: he’s diabetic, he’s lost a kidney to cancer, he’s had a heart attack and stents implanted. Oh, and he has a really rare connective tissue disease (polymyositis). So it really would take him all day to dwell on what ails him if he were so inclined.

“I know you know what I mean, Laurie,” he said.

Of course I knew what he meant, because I follow the same rules. This is not to say I don’t think about my health in the same way he has to on a daily basis, but thinking and worrying are two very different things.

He thinks about what he eats and thinks about his insulin. He thinks about how much exercise he needs to fit in and thinks about when to take his medication, but these types of thoughts are more rote procedure than anything particularly emotional or intellectual. I think about what time my chest PT is when I’m making plans, I think about taking certain meds on an empty stomach and others after I’ve eaten, and I think about what I’m buying at the grocery store in case I can’t find a parking spot and have to carry the bags too far. Nowhere in these deliberations does worry play a role.

Now, I’ve already admitted that I am somewhat of a control freak, something that bears mention in this conversation. I fully admit to being obsessive about certain parts of my life: making the bed, de-cluttering the coffee table, listening to certain music when I am writing, doing exercises at the gym in a particular order, etc. (Are you scared yet?)

I don’t obsess or worry about my health like that, though. Sure, I have moments where I’m genuinely scared or I wonder what it will be like 10, 20, or 30 years from now. Who doesn’t? But day to day, I don’t worry. I just do what I need to do and live my life, accommodating illness when I have to and defying it whenever possible.

But here’s the kicker: I worry about my father’s health. A lot. More than we each worry about our own combined. I inquire about his liver function often since the chemotherapy he takes is hard on the liver. I always ask for his latest cholesterol readings. I feel like there are so many moving parts involved in keeping him healthy (ish) and alive and I fear someone will drop one of them. I stress over his kidney function results, and spiral into a chain of what-if’s: Diabetes stresses the kidneys. He’s had it for over twenty years and he only has one kidney to begin with. The dye he needs for his heart catheterizations, angioplasties, and stents also stresses the kidneys, and he’s needed two rounds of the dye lately. What if he needs a transplant? Would he even be eligible, given his other serious conditions? Would his body be able to stand it if we found him a kidney?

“You can have one of my kidneys. If I’m a match, it’s yours. In a heartbeat,” I’ve told several times. Usually these offers of organs have no sequitor, and I get a lot of strange looks.

He always tells me not to worry so much, assures me that he is okay. But every now and then, he admits to the reality of his situation, and that actually reassures me. There is such a fine line between pushing along and getting through each day and plain old denial, and while I completely relate to his desire to just move forward and not focus on what’s wrong, I also think it’s important to acknowledge the long-term consequences…not enough to be dominated by them, but just enough to take them into consideration in the present, like when he's trying to balance his blood sugars or trying to squeeze in exercise.

In the end, I think this goes back to my need for control. I take my meds, I follow my regimen, and though in the end I can’t always control what my body does, I feel better knowing at least I have all the moving parts accounted for. With my father, control of his health is one more step removed from me, and because I care about him so much, I want to be the one to keep it all together.

I’ve promised him I won’t worry quite so much, but I’m not sure he really believes this will happen. After all, as my father, he faces the same challenge in terms of worrying about me no matter how much I assure him I am fine…so I guess we both need to follow each other’s advice.

Tuesday, April 24, 2007

From Hospital to Hub

So as some of you may have suspected given the gap in posts, my chant did not quite serve me in good stead. I spent the weekend before last in the hospital, which broke my longest streak ever (14 months) in terms of being hospital free, but all was not lost.

Certainly there were a few bumps: no, bronchiectasis and bronchitis are not the same thing so writing down the latter when I have the former during triage is not exactly helpful, and yes, the belligerent man in handcuffs in the next room wailing at the top his lungs, swearing, and hurling various insults and epitephs at the nurses and doctors trying to help him did unnerve the rest of us a bit.

But overall, collateral damage was minimal—I didn’t have to stay too long, and after intense negotiations, they agreed to avoid steroids and pursue another combination of treatment methods. I think I raised some eyebrows—I couldn’t breathe but was still trying to debate the issue anyway—but really, treating an infection and flare-up in a PCD/bronc patient does not depend on the exact same approach used in treating an asthmatic, and I just wanted them to understand that. I can’t say I blame them; how many PCD/bronc patients pass through their ER on a regular basis?

In the week since my discharge and initial progress, my symptoms haven’t improved in any discernable way, but life has been too interesting and jam-packed for me to care. Friday I was in New York to meet with my agent and editor to discuss my book. I had no voice (seriously, we’re talking Croaker here), coughed every two minutes or so, and was so pale I scared myself when I looked in the mirror.

But here’s the great thing: My agent and my editor know I’m sick. In fact, that’s one of the reasons why they think I’m the right person to write a book about living with chronic illness for people in their 20s and 30s and how this generation of patients is changing medicine, the work place, and society. After hours of dirty looks on the train ride down because of my cough, not feeling like I had to explain myself was a pleasant relief. Oh, and the lunch and the conversation were wonderful. I went back to my hotel feeling like I’d discovered my writerly voice again. (At least one of my voices was back in action).

To add to the bliss, we met up with friends at what I consider celiac heaven: Risotteria, this amazing restaurant in the West Village that serves a dizzying array of risotto dishes, gluten-free pizza, breadsticks, and paninis and the most indulgent GF desserts. My only regret is that my sense of taste was muted given my lingering plague, but oh the consistency! Biting into thin, crispy pizza that had just the right amount of chew to it is a sensation I have missed since going gluten-free. The true litmus test? The group had to question for a minute if the breadsticks were GF or not—if they are so good that “normal” eaters have to question, then we’re talking seriously good.

I pulled into Penn Station with a lot of symptoms, a huge bag of meds, my nebulizer, and a lot of other paraphernalia. I’d been nervous all week about missing the trip and lamenting the timing of my infection, but it all worked out. Illness was ever-present, but I rested when I needed to, took cabs when I couldn’t walk, and I didn’t apologize endlessly for doing so. The sunshine, the good food, and the mix of business and pleasure outweighed all the symptoms I couldn’t leave at home.

Tuesday, April 10, 2007

I Will Not End Up in the Hospital, I Will Not End Up in the Hospital, I Will Not…

That’s my chant for this week and so far, it’s working. (I’m tempted to be droll and say “But I’m not holding my breath” because of course if I could breathe and hold my breath at will, I wouldn’t need this chant, would I?)

Things are amiss in lung land. The evidence is all over our house: the nebulizer is in the living room instead of its discreet home in our bedroom and little empty plastic vials of Xopenex line the end table next to the tubing; various containers and “spit cups” are stationed in every room (don’t worry, the used ones are whisked away); my living room couch has become my office, a migration that only occurs when I am really feeling badly; tissues, a thermometer, inhalers and my peak flow meter are cluttering the coffee table; and by the end of the day, I am hoping that my new meds in their crinkly Walgreens pharmacy bags will add to the general disarray.

I haven’t been this excited to see the guy who does my chest PT in months. I also haven’t been this appreciative of my schedule, which allows me to work from home on Tuesdays, in a long time.

I joke that I get the plague each winter, but considering Easter was colder than Christmas this year, my lungs seem to be following suit. The low-grade plague I’ve battled since November has resisted several rounds of antibiotics and everything else I’ve thrown at it, but things reached a crescendo this Sunday, when I spent eight hours coughing and couldn’t walk from bed to bath without tightening up and getting really winded. Now, I don’t mind coughing any more than the average respiratory patient does—after all, it’s an occupational hazard, no?—but when it’s more spastic than productive and when little flecks of blood appear in whatever does manage to come up, I’m not pleased.

It’s not so much the hospital I dread as the requisite steroids that accompany a trip. It has taken me so many painstaking months to even begin to normalize after the two-year adrenal failure caused by the twenty-year pounding of toxic doses of steroids, and I will do just about anything to avoid them.

“Clearly if my choices came down to needing steroids in a life-threatening situation and dealing with all the effects of them or not surviving, I’d take steroids,” I said by way of reassuring my husband that even my zealot tendencies have a limit, but he looked less than thrilled with the bluntness of my statement.

So let’s hope the nebs, the inhalers, the chest PT, the new meds and everything else get me through the next few days. I’m in this precarious place where things could easily go either way, and it’s really an annoying feeling.

Coincidentally, I was re-reading the thoroughly engrossing and moving Breathing for a Living recently, CF patient Laura Rothenberg’s memoir (more on this at some point), and I realized I don’t write directly about my lungs all that much. Reading this book made me think long and hard about my lungs, and I felt alternately grateful for them and protective of them. Sure, I mention peak flows, or casually refer to not being able to breathe easily, but they are rarely the star in my posts….which is weird, since many of my other medical problems begin and end with PCD, bronciectasis, or some combination of treatments for them, and which is also weird because while a lot of my other conditions are annoyingly chronic, they aren’t the ones that have landed me in the ICU, they aren’t the ones that sometimes, when I think long-term, make me nervous.

Maybe it’s because they are always there, because even on my “good” days I still wheeze and cough and feel them, there isn’t too much to report. They’re a constant, and constantly talking about what is constant would be…well, boring. What makes Breathing for a Living so powerful and engaging is that it isn't a book of symptoms and uses those medical changes and fluctuations (especially pronounced in a double lung transplant patient) to propel a larger story, a larger, more compelling struggle than the symptoms alone could ever be.

Either way, my own lungs won’t let me ignore them today. Let’s just hope I win this week’s battle of wills.

Thursday, April 05, 2007

Cravings...and They're Only Three Years Too Late!

It all started two weeks ago at my niece’s fourth birthday party.

It wasn’t so much the sight of the pony-shaped cake (I kid you not on that one, but it was certainly cheaper than purchasing an actual pony) with the creamy frosting as it was the smell of it—thickly sweet. After watching her blow out her candles, I returned to the other side of the room and tried to ignore all the pieces of cake being passed around the room.

The following weekend, I was buying coffee in an attempt to be alert for my Saturday morning fellowship meeting when the sugary aroma of the donuts on display in front of me stopped me in my tracks. That same night, I had salad with grilled mushrooms and chicken sausage for dinner—something that usually satiates me just fine—and I could barely eat it when I saw my husband spooning up the very same chicken sausage, except his was nestled in a deep bowl of macaroni and cheese.

Even when we met friends for sushi, a standby favorite when I remember to bring my gluten-free soy sauce, my maki paled in comparison to the pan-fried dumplings that accompanied our order. What was flying fish roe next to piping hot, garlicky dumplings?

The last straw came when we were watching a Food Network Challenge that involved baking cakes of celebration.

“Do you realize that as long as I live, I will never have a bite of real cake again?” I asked my husband.

He looked at me nonplussed; he’d gummed down the gluten-free layer of our otherwise normal (and, apparently decadent) wedding cake with me, so this definitely wasn’t news to him. The catering staff assumed we’d both want to eat from the same top tier we’d cut, so he got the gluten-free version of raspberries and cream. That’s love. (He also accidentally dropped some of said GF cake down into my strapless dress when we were cutting it, so I’d say we were even!)

“And I will never take a bite of a glazed donut or eat pan-fried dumplings or….” I continued to rattle off a list of sweet and salty carb-loaded goodness. (Let me interject with yes, I know there are plenty of GF options out there and I know they are quite declicous and worth the effort, but that's the rational response, and I'm not talking reason here.)

The humorous aspect to this conversation is not simply that I had this epiphany a full three years after I was diagnosed with celiac disease. Seriously, isn’t it a bit late in the game for this?

No, what’s really kind of ridiculous is that these were not even things I ate "before." I always turned down the box of Munchkins that went around the classroom, I was militant about my no-cake policy on my birthday since I was in middle school, and I always picked “steamed” over anything “pan-fried.” I ordered salad when friends got pizza, and the only other time I’ve had fast food since the late 1980s was when I was on a spelunking trip in Western Ireland and there were literally no other options.

I’m not exaggerating any of that. A lifetime on steroids and an ever-present diet will do that to you.

So yes, for two weeks now I have had intense, distracting cravings for things I didn’t even like all that much. It’s not that I miss them—I miss the idea of being able to choose them.

Does that sound incredibly silly?

Two nights ago, my husband almost gave in to lesser instincts and came close to ordering delivery pizza at 11pm. He went back and forth, ultimately deciding it would really be too gluttonous.

“Well, if it makes you feel any better, I will never have a piece of pizza from Domino’s as long as I live,” I said, half-joking, half being a jerk.

“Um, not really.”

It didn’t make me feel any better, either. It just made me sound bratty. That was the moment I snapped out of it a bit. I’ve since reconciled with my salad greens, my apples and red grapes, my grilled chicken and my brown rice, my rice crackers and gluteen-free tamari.

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