Timing (Sweet) Timing

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Can I just say that my timing has always been….ironic? No less than three hours after I posted my last entry on worrying about my father’s health and the general nuttiness that consumes my mind, my phone rang.

“Your father’s [thallium stress] test went badly. The artery they stented in August is 100% blocked again and he’s being admitted,” my mother said.

Cue pit falling in stomach and tears welling in eyes. Not again.

Thus began several days of waiting, waiting to see if he would need a triple bypass surgery or if they could re-stent his major artery and leave the other four blockages alone for now. Either way, he’d need the dreaded dye for the catheterization, and his one little kidney still hadn’t recovered from August’s trauma.

Are you freakin’ kidding me? First of all, the man had done everything right: his cholesterol was the lowest it had ever been, he exercised regularly, faithfully took all his meds and statins, even dropped down to a four-day work week since the August scare. All that, and we were told that 95% of the time, stents lasted a lifetime. Of course the man with one kidney and a billion other medical problems was in the 5% of patients whose stents failed within months.

Secondly, what are the chances that the very day I write a post that talks about his health and my tendency to be a little overbearing and obsessive about it he gets this news?

In high school, after eight months of rehab from ankle surgery I made the JV basketball team (and yes, there were in fact cuts!). The day before my first game, I caught the ball awkwardly and because my bones are like twigs, I broke my hand. End of season. In grad school, shortly after I finally recovered from the one-two punch of whooping cough and viral pneumonia, my adrenal system failed. All this happened just as I was settling into the weekend job I adored at the Devon Nicole House at Children’s Hospital—and these are just the first instances to pop into my head.

My father’s timing is even more ridiculous. I could write pages about it, so I’ll just focus on recent events. In August, he got chest pains just after the ferry departed from Hyannis to Martha’s Vineyard, making for a long, harrowing ride. Last week, he felt short of breath and tired again, just as he was about to get on a plane and fly to DC and then Florida for conferences he’d looked forward to all year, events he was leading and presentations he’d labored over. Instead of going to the airport, he went to his doctor.

But there is a first time for everything, and my father’s catheterization Tuesday went better than best case scenario. I can’t even believe I just wrote that in conjunction with him. Better. Than. Best. Case. Scenario. They didn’t need to do the triple bypass, and they used so little dye during the cath itself they could re-stent it then and there, something no one thought they’d be able to do.

Feels too good to be true, but as each day goes by, we’re believing it more and more and we’re inspired by it.

During the long days in the hospital this week, I thought a lot about what I’d write here. I kept coming back to my last post and how my worries and actual events collided like that. It was tempting to bemoan our collective timing yet again, but something stopped me. My father was alive, and a lot of steps went into that process.

He was a ticking time bomb for months, walking around with a major artery 100% blocked and not realizing his stent failed. He was about to fly all over the country. What if he’d had another heart attack and this time it was on the plane? Or in a hospital far away where no one understood his beyond complex medical history? What if he hadn’t called his doctor exactly when he did and hadn’t been able to squeeze in the stress test?

His timing was pitch-perfect.

The more I think about all the near-misses, the plans gone awry and the events missed at the last second, I realize just how much timing impacts my life, our lives. Illness is never convenient and disappointments are frequent, but we’ve made it this far. I wouldn’t change our timing by one second.

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Who Me, Worry?

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“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.

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From Hospital to Hub

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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.

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

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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 reports…it 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.

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Cravings…and They’re Only Three Years Too Late!

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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.

Mostly.

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One Year Down….

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One year ago I posted my first blog entry. Compelled by the sense that there had to be people out there like me—young and living with multiple chronic illnesses—and that if only I started to write about it I might connect with them, I started slowly and hesitantly. Would anyone read what I’d written, and more importantly, would anyone care about what I had to say?

The first couple of months I only posted once or twice—between graduate thesis work and my goal of posting essay-type pieces that offered some sort of insight and could hopefully stand alone, it took me a little while to find my rhythm. I began to notice a pattern—people started commenting, and their insights helped me think of things in new ways and pointed me towards all sorts of blogs and perspectives. I am deeply grateful to those of you who have found something that resonates with your own experiences enough to keep on reading.

When you live with rare diseases or multiple diseases, it’s easy to feel isolated, both in terms of day to day to experiences and also in terms of a writing community. Not many people write about PCD or bronchiectasis. I knew I wouldn’t have the huge, thriving audience that a well-known disease like diabetes would, and that while a lot of my experiences with things like infertility and chronic fatigue or celiac disease and thyroid problems related to things other people have or write about, I wondered if the fact that this wasn’t a disease-specific blog would somehow isolate me.

My hope was that the overall experience of living with chronic illness—the ups, the downs, the minutiae of daily life, the relationship moments—were universal enough to apply to anyone who clicked on my blog, that issues of identity, acceptance, setbacks, and hope transcend any one disease or condition, and, of course, that there is humor in all of this craziness.

That’s still my hope.

One year later, I think I’ve found a rhythm, one that wouldn’t exist without the people reading it on the other end.

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Thinking Blogger Award

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To my surprise and appreciation, Elizabeth at fluent gave me a Thinking Blogger Award. Unwittingly, she has made my job of selecting five blogs that make me think, make me question, and challenge me a little bit harder because hers would be right at the top! Thanks, Elizabeth, and your musings on writing, writers, and life in general always give me something to ponder.

With no further ado, then, here are five of the many blogs that make me think:

Musings of a Distractible Mind: This doc’s curiosity is matched by his intelligence and wide range of interests. A great read.

Managing the Sweetness Within: If there’s one thing Lyrehca likes to do, it’s ask questions. She’s asked a lot of terrific ones as she juggles Type 1 diabetes and pregnancy, and she is as insightful as she is hilarious.

Swimming Upstream: I first found this blog through Elizabeth’s site and have been engrossed by this writer/MFA student’s honest, thoughtful prose.

Tundra Medicine Dreams: The thoughts about medicine are as striking as the amazing photography and descriptions of Tundra life–an intellectual and visual treat.

Emergiblog: Kim’s blog is informative, interesting, and always satisfying.

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Ups…and Downs

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I was struggling with a way to tie all the things I wanted to say into a neat little essay-type piece, so I decided to chuck the structure constraints and just go through them.

1. It’s officially springtime. Not that you’d know it from the snow on the ground and the fact that I’m wearing gloves today, but it’s a start. It occurred to me as I walked my dog this morning that I made it through a winter without being in the hospital. It has been at least a decade since I’ve said that. True, I’ve suffered from various plague-like infections since October, I haven’t been able to hear out my left ear for a couple of months now, and my peak flows have been horrid, but no matter. No steroids, no hospitalizations. Now, if my immune system and my antibiotics can hold out for a few more weeks, I think I’m in the clear.

2. When I am not jealous of Dr. Jerome Groopman (a famous doctor! A staff writer for the New Yorker! A widely-published book author! The man has that whole left and right brain strength thing going on that I can only imagine) I am wholly appreciative of and fascinated with what he writes. His newest book, How Doctors Think, tackles a subject near and dear to my heart, misdiagnosis. He argues that misdiagnosis results from mistakes in thinking, “cognitive pitfalls” that occur when doctors assume certain things based on a patient’s history or complaints and “anchor” themselves to one idea/diagnosis instead of considering broader possibilities. (See a great article taken from the book here ). Having been involved in this exact scenario for years, I really appreciate the clarity and insight Groopman brings to this discussion, and am looking forward to reading the whole book. (Plus, it makes me feel a little less crazy after all those years of answers that didn’t match my problems and a little more understanding of the physicians behind those diagnoses.)

3. There are days when I seriously question what I do and how long I can do it. There are also those wonderful, uplifting, soul-buttressing days, though, when I have no need to question. I have some amazing students. Thoughtful, inquisitive, and intellectual students whose projects and interests truly excite me, whose questions about science and public health and society make me want to read more and whose research reassures me just a bit about the future of our country’s health care system.*

4. Three people in my personal life are pregnant right now; two just made the announcement recently. Wonderful, exciting news, the kind of news you need when it’s cold and miserable out and you just want spring to start, when you just need to reminded that everything is a cycle and there is always the chance to start anew, when you can feel yourself getting happier just by virtue of their happiness reaching out to you. **

5. I had an amazing conversation with an incredibly wise and insightful CF patient the other night, one that left me with so many questions and so many things to think about. It was the kind of talk that left me humming with energy, my mind going in so many different directions. ***

*Sometimes I still question the choices I’ve made. Just when I think I’ve set up a schedule that is conducive to my health and my writing, I am plagued with doubt. Am I being lazy? Wouldn’t things like medical bills be so much easier to stomach if I took on more classes? In theory I am making an investment in the future by proceeding this way now, but that lag between theory and practice can be difficult sometimes.

**Apparently this spate of fertility has prompted well-meaning people to approach my mother and ask when we’re going to have kids. Not surprising, since people have been asking us that since we were engaged, but since that’s a complicated question with an even more complicated answer, this unsettles me. Right now there isn’t much to say about it, and I find myself not wanting to discuss what is there to discuss. I suppose I just wish the good news—the pregnancies—could remain all about the pregnancies and the people involved in them. I mean, I know it’s human nature and an inevitable (and innocent) question, but I’d rather just focus on the three babies, not what anyone else may or may not be doing in the near future.

***At one point, I was asked “Do you know anyone like you?” I answered that no, I didn’t personally know anyone with PCD but that in the past couple years, I’d found groups online. I read from time to time, but rarely post. This segued into a really interesting discussion about the nature of community at different points in illness—for example, how if you’ve been sick all your life you might not need the same community you did as a child but if you’re sick for the first time as an adult, you might really need to seek out people with the same condition. I said that no doubt it would be valuable to know someone with PCD face to face, but that I know enough people with significant illnesses that I can extrapolate what I need to. Since I’ve never known anyone like me (except my parents, to an extent), this hasn’t bothered me.

I got home that night still thinking about community. In my inbox was an e-mail saying someone from the PCD Web group had died at 42. It was not anyone whose posts I had ever read, but I felt really down. It hit me that with community comes the burden of reality.

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A Healthy Narrative

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In Illness and Culture in the Postmodern Age, David B. Morris highlights this distinction between disease and illness: “The power to make us sick or well inheres not only in microbes or medications but in images and stories…the main assumption underlying the distinction between between disease and illness is that knowledge falls into two broad categories, objective and subjective” (36-37).

While many things within this quote (and, in fact, his entire book) interest me, for the sake of this particular entry, I’m intrigued the idea of stories and their relation to this division of knowledge into subjective and objective…basically, I am interested in the role of the narrator and storyteller.

As a patient, the role of storyteller is so important. We bring our subjective experiences with illness—the actual process of living with conditions—to our doctors, who hope to match up what we tell them with a different type of knowledge, science. So the details we choose to disclose, how we disclose them, and the narrative we establish about our illnesses often shape our diagnostic journeys. Certainly there are countless tests out there whose results can confirm, refute, or re-cast our stories, but what we describe to our physicians sets the whole process in motion. If I say I generally have pain and fatigue or I say I have pain in my trunk accompanied by muscle weakness and tenderness that worsens after exertion, then I am giving my doctor two different avenues to explore that might share some similarities but can lead to very different destinations.

So what does it means to be the storyteller? It should be pretty easy, right? But that’s not always the case. I know from firsthand experience that assumptions, fears, and self-consciousness can really affect what I say and how I say it: I don’t want to sound like a complainer if I list too many symptoms, I don’t want to seem like I’m making a big deal out of nothing, I don’t want to deal with more tests so I might not mention certain problems I’ve noticed. In addition, despite my best intentions and the short lists I’ve made in preparation, sometimes I get so wrapped up in a particular conversation with a doctor that I forget to touch on other details…we’re threading a different narrative line and I’m unable to shift its focus.

My incomplete narrative may be authentic to my subjective experience in many places, but it is not whole. But can it ever be?

As a writer, the role of the narrator and storyteller is inherent in every step of the writing process. In order to create atmosphere, emotion, or a factually accurate account that is concise enough, we’re constantly choosing certain details and facts over others: what does my reader need to know about the background of a situation to understand a current dilemma? If I’m trying to illustrate a particular aspect of a relationship or make a specific point, what other information about the dynamic do I need to cover? If I’m writing about a scene where something good happens, is it disingenuous to leave out negative moments that were also part of the back story if they interfere with the true (but incomplete) moment I am describing?

And of course this process is filled with the same types of obstacles that occur when we’re asked to be narrators of our illnesses: how do I come across to my reader? Does the situation I have described make sense or does the reader need more information? Will I hurt or offend anyone I have portrayed? Will anyone care about what I have to say? I am the one deciding which facts to include, so even if my finished product yields a cohesive storyline, I know it might not be a complete one.

This tension is not unique to the position of patient or writer, but since I exist within both modes, it’s interesting to look at how they intersect. I think there will always be that push and pull between the subjective (our experiences) and the objective (science, facts, historical record), but that’s what makes both medicine and writing so dynamic.

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An Addendum to “Why I’m Not a Numbers Girl”

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You may remember that I don’t typically care much for numbers—how they can define us, how they can limit us, how I can’t escape them even when I wish I could. (Here’s the post all about that.)

I humbly submit an addendum to “Why I’m Not a Numbers Girl.” Don’t get me wrong, in most instances, I still feel that percents and ratios and variables and risk assessments too often fail to quantify what’s most important. I still don’t like that as patients, too often we’re reduced down to a list of stats and numbers (vitals, meds, dosages, surgeries, lab results).

But I recently (re) discovered that sometimes, numbers can actually better our understanding of ourselves. Not exactly earth-shattering news, I realize, and certainly all you diabetics who test blood sugar daily or patients who monitor blood pressure and other routine activities like that must be rolling your eyes at the obviousness of that statement, but it’s an important realization for me.

When I was acutely ill (in and out of the hospital for weeks at a time), the doctors trying to figure out what was wrong with me asked me to keep track of my peak flow meter readings. For those of you blessed with hearty lungs, a peak flow meter is basically a tube you breathe into that measures how much you can exhale. The lower the number, the more constricted your airways, so peak flows are a good way to predict respiratory trouble. I stuck with it for several weeks, filling in the little boxes in a notebook a doctor gave me…and then I went into the ICU again and everything got thrown upside down. When I came out of this hospital, I had a new team of doctors and a million other new things to consider and somewhere along the way, my little notebook disappeared.

And then last week, in the midst of spring cleaning my medications (so long, empty pill bottles! See you later, empty inhaler canisters!) I stumbled across my humble little peak flow meter. A desire for more order and predictability in my life coupled with an increasing interest in Microsoft Excel prompted me to re-instate the daily peak flow charting, this time with nifty little grids and columns.

The result? I’ve noticed a pattern: the days where my morning readings are especially low (they are never spectacular, even on my best days) correlate with the days where I wheeze more, cough more, and in general experience more fatigue. The days where my early morning readings are higher? I am able to go to the gym, I don’t spend half the day coughing, and I can get a lot more done.

Duh. I know you’re thinking it. I am, too. Somehow charting peak flows just slipped to the bottom of my priority list, far below all the other more time-consuming things I do to maintain my health. No, knowing my peak flow readings will not prevent my bad days altogether, but it will help me prepare for them and predict them. I understand my body and my symptoms so much better once I stopped long enough to pay attention to my internal warning signs.

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