Category Archives: PCD

Dissecting a Diagnosis

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Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

Fragmented (or, the post where I come clean…)

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“I don’t like your body language. You’re not yourself,” was the first thing my doctor said as he entered the room. I was slumped in my chair, and I didn’t need a mirror to know I was pale and my eyes were ringed with dark circles. I did not jump up to greet him like I normally do, and I did not talk quickly or with animation like I normally do. Also, I did not contradict him; I didn’t like my body language, either.

(Apparently, this is what six months of virtually continuous infections will do to a patient’s posture.)

“What’s on your mind? You’re not yourself,” my husband said to me one night as I closed my laptop and stared listlessly at the television, trying to ignore the clutter of the “sick camp” that had taken over our living room: nebulizer and pill bottles fighting for space with stacks of research books, student papers, and half-empty mugs of tea. I was tired of typing while lying down.

(Apparently, this is what six months of virtually continuous infections will do to the coffee table.)

“Are you sure you’re alright today? You’re just not yourself,” my mother said to me in a quiet corner of an otherwise crowded baby shower. She delicately inquired if I was wearing any blush (hint: you need some) and pointed towards the table where I could sit. As I made my way across the room, more than one surprised person said to me: “Oh wow, you’re here. You never make it to showers or events.”

(Apparently, this is what six months of virtually continuous infections will do to my ability to be reliable.)

I do not have direct confirmation from the students I fear I have been short with, the clients and many others still waiting for responses from me somewhere out there in cyberspace, or the friends whose calls I’ve missed or plans I’ve cancelled, but I’m willing to bet they’d agree with this assessment that I am not myself.

Not to get all meta on you, but even here on this blog I feel as though my voice has been slightly off; more cursory and more willing to point you to other places for interesting material rather than being a destination for the discussion itself.

Now, as a general rule I find the term “not myself” a bit vague and useless—how can I be anything other than myself? But the point is well taken; I am not acting as I normally do (or talking, sitting, thinking, and basically getting through the day as I normally do.) I admit it.

For one, I am fragmented. This is something I hear from so many people right now, and I’ve noticed it on several blogs the past few weeks—people taking a break from blogging, or taking a break from commenting and reading, or disconnecting from everything for a bit because there is too much going on. Seems like so many people are taking on more projects and extra work with less time and energy to do it all.

In my world, the freelance deadlines, the huge research project, the class prep and essay grading, the student e-mails (and phone calls!) late at night and early in the morning, the presentations and speaking engagements, and the many other things constantly piling up equal working seven days a week. But I know that while the work details themselves may be different for others, the end result is the same: we’re all being pulled in several different directions.

Usually, though, I thrive on this kind of juggling. This is how it’s always been, and I’ve always thought of it as multi-tasking, not being fragmented.

So what’s different? I just haven’t had the energy to fully engage in most of the things I need to do. “It takes so much energy to simply get through the day and get home that there’s nothing left for anything else,” I told my husband.

I’ve been blaming it all on the long winter here in Boston, sort of joking when I do. But it’s the truth—no winter is ever good for me, but the months from September through right now have been an unusually bad few months. Nothing exotic or hugely interesting, which is why I’ve been hesitant to write about it much, just one infection after another after another after another. Ad infinitum, it seems. In almost seven months, I’ve gone a whopping nine days between infections.

(I’m tempted to say I have the immune system of a gnat right now, but knowing little about gnats, I’m worried that may not be as helpful an analogy as I’d hoped.)

Again, none of this is unexpected in people like me; for whatever reason, this year has just been more virulent. (Ha! Pun somewhat intended). And it took me several months to see for myself how much of my energy was diverted away from other things in my life and consumed by fighting off infections.

So maybe it’s not that I’m fragmented so much as I am currently doing too many things for the altered supply of stamina I have.

Or am I splitting hairs here?

Anyway, I think things are turning around (ignoring the 30-degree weather today, of course). I’m starting to feel better, and my doctor and I have an official plan to try and get me through the next few months. Oh, how I do love me a good plan. I am encouraged by this, and I am confident I can get past the nine-day mark soon. I am not as stressed by the pile of things to do because I’m actually able to chip away it.

And winter? It’s officially over. Now I just need the lungs to get the memo, and we’re all good.

I’m back.

(Apparently, this is what two virtually continuous days of feeling okay will do for a soul.)

Thanks for waiting.

PCD Foundation is “Charity of the Day” Today

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As so many of you know, fundraising, awareness, and research are critical for improving patient outcomes and quality of life. For rare diseases that don’t get the face time and air time more common disease receive, this is especially true, and disease organizations are often our lifeline. So, I was pleased to get an e-mail last night informing me that GoodSearch named the PCD Foundation the “Charity of the Day” for today, Wednesday, June 25, 2008. Rather than forward the e-mail, I’ve included text from the PCDF press release below:

“GoodSearch.com and GoodShop.com are convenient ways for the PCD community to participate in fundraising for the foundation with no direct out-of-pocket expense. Goodsearch.com is a search engine (powered by Yahoo.com) that pays a penny per click to the designated charity. Goodshop.com is an online shopping service that can be accessed on the GoodSearch.com homepage that allows buyers to purchase from a wide selection of popular vendors with a portion of the sale going to the PCDF. The buyer does not pay any more than if they were to shop directly from the merchant.* Together, GoodSearch.com and GoodShop.com are powerful and convenient revenue-generating options for non-profits of all size. For small non-profits, like the PCDF, they are an essential part of our revenue stream…

*You can shop at hundreds of great stores. Amazon, Best Buy, Macys and many others have teamed up with GoodShop and every time you place an order, you’ll be supporting the PCDF!”

Here’s an idea–if you’re heading to Amazon to buy Life Disrupted, do it today through GoodSearch.com and help a wonderful cause. As a PCD patient myself, I can’t say enough how important the community-building, education, and research efforts the PCDF spearheads are.

(And no, I didn’t plan that shameless plug. The timing was just that good!)

PS–Tonight at 8:30 pm EST I’ll be a guest on syndicated health columnist Judy Foreman’s Health Now, an Internet radio show on HealthTalk . If you’re free, tune in and listen, and click on the link to register and ask a question.

What’s In a Treatment…

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Earlier this week, I was fortunate to attend an event at Fenway Park (can’t ask for a better setting than that!) benefiting and celebrating the neuroscience department at BIDMC. On so many levels, it was a wonderful evening. I got to chat with one of my favorite medbloggers and BIDMC CEO, I met a fascinating and highly acclaimed memoirist, and spoke with all kinds of people doing creative things in health care.

The most exhilarating part of the evening was learning about the innovative research and treatments these doctors are working on, and the atmosphere of collaboration and care for the patient that guides it. Whether it was discussing yoga and dance therapy for Parkinson’s patients, hearing patients talk about stroke rehabilitation, or learning how noninvasive techniques can help patients with a variety of conditions, it was impossible not to feel the energy and potential gathered in that room.

You don’t need to be a neurology patient or even the friend or family member of one to appreciate these types of advancements. In fact, the idea that if given the appropriate time, resources, and environment researchers can get closer to developing more refined, targeted, and effective innovations for diseases is one that stretches across many disciplines.

By pure coincidence, I also stumbled across this Slate article, “Old Drugs, New Tricks” this week. Writer Darshak Sanghavi points out that in some of the major fields of medicine—like pediatric oncology, or cardiovascular disease—some of the most significant strides in increasing patient survival rates came from refining existing older drug therapies, rather than aggressively hyped new medications. Of course he points out cases where brand new drugs have made enormous (and unexpected) gains for patients, but his central point is a compelling one, and his thoughts about why some specialties are better equipped for the long-term, rigorous studies that make such refinement possible make a lot of sense.

As someone with multiple conditions of varying degrees of severity and treatment options, I find myself in an interesting position within this debate. When I was diagnosed with PCD and bronchiectasis a few years ago, my treatment regimen changed in many ways. While I had pretty much lived on steroids and all kinds of inhalers for most of my life (and spending weeks each year in the hospital and getting worse with each trip shows how well that worked out for me), I switched over to a system of rotating strong antibiotics. I still use inhalers and my nebulizer, but the steroids are no longer the first line of treatment. I also started daily chest physiotherapy, and that has made such a difference in my quality of life.

I mention all this because for me, some of the biggest improvements in my quality of life, and even my survival, are tried and true therapies. (This isn’t to say that some of my antibiotics aren’t newer generation, or that the vest I use when I can’t get chest PT isn’t a more modern version of the very physical and visceral pounding I get from my therapist, obviously.)

These things were already in existence and working well in some populations—but if it weren’t for advanced technology and research, I wouldn’t have known to use them because I wouldn’t have been able to get the correct diagnosis for such a rare condition. Without research and innovation, I’d still be chafing under the wrong diagnosis, living between hospitalizations, and causing yet more irreversible damage to my lungs.

(You can probably see now why the research I learned about the other night was so exhilarating, yes? Hope is an equal-opportunity phenomenon.)

So while my daily life involves many old-school techniques, my improved quality of life and my existence as a PCD patient speaks very much to new-school capabilities. It’s a collaboration between what we already know works for similar patients and what we’re beginning to understand about how specific cells and structures function—and based on what I learned the other night, it’s a collaboration that also stretches across all sorts of specialties and boundaries.

Clearly I can’t say if so many of us will ever have a cure for what ails us, but the more innovation and collaboration we have, the more we can refine treatments and understand the origins of our disease and target specific pathways, connections, and cells, the better. As the Slate article points out, it must be done in the appropriate way, and as recent events have shown me, when this happens, it’s a great thing.

Valentine’s Sensitivity Training

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Were it not for the steady stream of slushy rain, the flood watch, and the generally miserable weather last night I wouldn’t have considered a Valentine’s post at all. That’s how cringe-worthy I find the obligatory Valentine’s post. But we’ll return to epics floods and wild winter weather in a moment.

First, a quick update on the great plague of 2008:

I can walk. And talk. At the same time. And, without coughing till I throw up or pop blood vessels across my face that even the hardiest concealer can’t hide. This is progress, people. There’s a long way to go, to be sure, but things are more manageable.

Now, back to winter floods. Last year, February 14 fell on a wretchedly damp, raw, icy day. In fact, our city street flooded and then froze, leaving all the cars encased in a couple feet of ice for several days. I remember this vividly because the walk to the subway was an exercise in survival and cabs were nowhere to be found.

I also remember sitting on the nearly empty train car (apparently everyone else decided dinner out wasn’t worth braving this weather, but we weren’t so faint of heart) with my scarf-ed, glove-ed, wind-whipped reflection staring back at me. I was so engrossed in what I was telling my husband I didn’t notice how quiet he was. I was really excited about new research on improved diagnostic measures for PCD I’d read about earlier that day. It was technology I’d already used at my doctor’s office, but I was pleased to see its efficacy confirmed and hopeful that widespread use of it might mean easier diagnoses for other patients (PCD is notoriously hard to diagnose).

Later, as the various courses of our Valentine’s pres-fixe dinner arrived, I was still animated and excited. He was still quiet. I was oblivious, he was frustrated.

Turns out, Valentine’s Day dinner might not be the best time ever for research chat. (Did I mention the obliviousness?)

It wasn’t that he felt we talked about PCD (or any of the other conditions) too much—day to day, there really isn’t much to say. You cough, you wheeze, and with any luck you breathe okay and manage to avoid catching an infection. There’s not much riveting conversation to be had about it.

And it wasn’t that he felt the new research was scary or depressing—on the contrary, it was full of hope and promise, and intellectually he understood why it was encouraging.

This information was good stuff, right? So where was the problem?

But on a night that’s supposed to be about us, the side of medicine, however positive it was, that accompanied our meal was less than welcome.

On a night that’s supposed to be about us, PCD and all its potential, good and bad (and with progressive diseases, the long term potential for bad is certainly a legitimate issue), was also a reminder that someone he loves is sick and he can’t change that or fix it.

And when you love someone, isn’t your first instinct to take away whatever it is that causes them pain or discomfort? (And would you want a reminder, however benign, that you can’t?)

Message received. Timing is everything.

This year is different. The epics rains ended last night and today is actually sunny. We’re driving to our restaurant this year because our reservation is late and now we have a driveway, meaning we don’t need to take the subway because our car is iced in and we don’t want to circle the block till midnight looking for a space.

And I don’t happen to have any new research or facts to share, but if I did, I’d save quoting the statistics and waxing poetic about the methodology for tomorrow.

We won’t need to talk about how I feel, because he will be able to tell by my complexion and my eyes and the way I inhale when I talk exactly how I am feeling and that unspoken understanding is better than any conversation.

Carnivals, Links, Nebulizers…

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Increased time spent with my trusty nebulizer plus increased deadlines with a dash of extended family functions=what?

You guessed it, even more time with nebulizers, chest PT, and new meds. Oh, and it partially explains the lack of posts the past week or so, despite the ideas teeming around in my cluttered head.

However, I do have some links to quality reading to share. First off, it’s the end of the month, which means the monthly Pain-Blog carnival is up at How to Cope with Pain. The best posts of each month are featured, and new bloggers are always welcome to contribute.

Also, I’ve written before about patient authority and the right to say “No” to procedures. (I’ve also left the hospital against medical advice before, but that’s a whole other story, and turns out I was totally right to do so.) Most times, though, I do what I’m told even if I don’t like it–because let’s be serious, is there usually a lot of appeal to invasive or otherwise uncomfortable medical procedures?–if it’s something my doctors and I feel will best give us the information we need to improve my health. Anyway, I mention all this because I came across an interesting Explainer piece on Slate.com about patients’ rights and consenting to medical procedures. Check it out if you have a minute.

When Is a Cold Just a Cold?

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Well, never, in my world. It’s on my mind this weekend because instead of seeing friends like I had planned, I spent most of my time on the couch debating when to use my nebulizer. Was it the remnants of the New Year’s infection? The rumblings of something new? I’ll know by the end of the week.

There’s definitely a theme to my winter survival mode: a brand-new, extra large size bottle of hand sanitizer is on my nightstand. A mini version rests comfortably in my car’s consol, another one lounges in our kitchen drawer, yet another adorns the downstairs bathroom, and a lovely raspberry-scented model is stowed away in my briefcase, where it is never more than five seconds from me.

And with this rogue band of weapons, I attempt to stave off the runny noses of toddlers with daycare colds, the spraying sneezes of commuters on crowded subway cars, the coughs and infected hands that shuffle all the papers toward me in class, the germs flying around the hospitals and doctors’ offices I frequent. Before he leaves my house every day, my chest physical therapist uses whichever bottle is handy so he doesn’t spread my germs to any other patients, and I am grateful for his vigilance.

I will admit I’ve always had germaphobe tendencies. I’m the girl who layers toilet paper on the seat in public restrooms and takes an extra paper towel to shut off the faucets and open the restroom doors after I’ve washed my hands. At one point in college I even wore flip-flops in the shower, and it wasn’t a community shower in a dorm. It was a shower in a 5-person townhouse that was cleaned weekly.

Trust me, if you had my immune system, you’d probably be the same way. Well, maybe close to it, anyway. You’d at least be into the hand hygiene.

I caught a cold on the plane ride out on my honeymoon, which took place in the summer. By April of the following year, I’d finally calmed down the lingering plague that touched off during that one plane ride. My niece had a slight earache when she slept over one night. Three days later, she was fine. Three days later, I had a ruptured eardrum, a steady river of goo streaming out of my ear, and an infection that wasn’t responding to IV antibiotics.

Um, yes. And I’m being honest when I say I’ve come a long way since I was a kid and I had strep in my ears and my knees, staph infections that required prolonged stays in isolation, numerous surgeries, and had something going off to be cultured literally every week.

For most people, a cold is synonymous with misery—congestion, sore throat, cough, poor sleep, the whole works. And a cold is every one of those miserable things.

For me and anyone else with immune or respiratory issues, a cold is synonymous with several weeks (or months) of sickness, hospitalization, multiple new medications, and protracted annoyance. It will spread to my lungs and settle down for the season, and spread to my ears and camp out there for months. It will linger and fester and mutate and replicate, and it will end up being something nastier and greener than the simple cold it started out as…but no matter what, it is never just a cold.

I may look like your typical overzealous germ freak but I prefer to see it as being proactive.

And because I love toddlers with their runny noses and wouldn’t trade the interaction with students and prefer taking public transportation to wasting gas and jostling for parking spaces downtown, I will arm myself with colorful bottles of hand sanitizer and brave the outdoors.

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Switching gears from what everyone experiences—colds—to what few people experience, there was an interesting read in Newsweek’s “My Turn” column recently about living with a rare disease. The writer posited that living with something no one else around you has is a “little like being an orphan” and in some ways, that’s true. When you have something that only affects a few thousand people (the National Organization for Rare Disorders classifies an “orphan disease” as any which affects less than 200,000 people), you certainly don’t see huge fundraising campaigns, national events and color-coded ribbons.

You have to seek out whatever community exists, or you have to create your own. I don’t know a single person with PCD (and only one with bronchiectasis) in real life, and until I found Yahoo groups and other online forums for patients, I had nothing to compare my experiences to except what I knew about from cystic fibrosis patients.

And yet there are literally millions of patients living with rare diseases out there, so connecting and establishing those ties is so important.

Because I also live with conditions that many people have, I also know that while it’s harder sometimes to have something no one’s ever heard of and can’t even pronounce, the basic experience of living with a chronic condition is universal. The ups and downs, the setbacks and the progress, that fundamental tension between what you want to do and what you can do remains unchanged.

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Speaking of setbacks and progress, Jenni over at ChronicBabe has a put together a great recap and response to the NYT’s recent article about fibromyalgia, Lyrica, and whether or not FM is real. Whether you have FM or not you need to check it out!

’Tis the Season…?

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I’m spending the day in the hospital, waiting for someone I love to get out of a long surgery. I came prepared—laptop, headphones, research I should be doing, and of course, several glossy magazines. (What can I say? Distraction is the best antidote for worry). I noticed a definite theme running through all of the magazines—this is the season for stress. There were tips on stress-free shopping, stress-free entertaining, stress-free family functions, and stress-free travel.

It made me think of a recent post I wrote about stress and illness and the tenuous relationship between the two.

Just in case I haven’t already hit you over the head with it (let’s be serious, if you’ve read the other post, you know my position), I believe in the distinction between stress causing illness and stress exacerbating illness. As in, stress did not cause the genetic respiratory condition responsible for so many hospitalizations—my suspect genes did. As in, stress did not make me cough for 17 hours straight and go into respiratory failure, but 20+ years of the wrong treatment for the wrong disease certainly contributed.

Did stress play a role in making the infections and recovery worse? Sure it did. Stress takes energy away from recovery. I’ve seen stress make diabetic blood sugars skyrocket, I’ve seen stress make arthritic joints ache with more severity, I know this relationship is a strong one.

As firmly entrenched in my position as I am, my husband said something the other night that gave me pause. In speaking with someone else about my health, he mentioned that I was much more stable the past few years because of the lifestyle changes I’ve made. “Your schedule in college would have made the healthiest person run down and sick,” he said.

He had a point. In college I worked anywhere between 30-40 hours a week on the campus newspaper (usually from 5pm till the middle of the night), got up early to fit in five courses a semester, interned another 15-20 hours a week, and did lots of other random stuff. I was either running around on 3 hrs of sleep and heavily over-committed, or I was an inpatient.

For three years now, I’ve proudly asserted that the reason I am in the hospital less often and for shorter periods of time is because I finally have the right diagnoses for several of my health problems. I’m getting the right kind of preventative treatment (daily chest PT), I’m on the right medicines, I’m seeing a doctor who specializes in what I have. I’ve stopped the vicious cycle, and better understand how to cater to my persnickety lungs and deficient immune system. I firmly believe if I hadn’t gotten this diagnosis and wasn’t doing all these things, I’d still be making trips to the ICU. It surprised me that my husband hadn’t factored this into his conversation. To me, it is all the difference in the world.

And yet, I have made a lot of lifestyle changes. I don’t survive on three hours of sleep per night (adrenal failure makes that one pretty impossible). I am not so desperate to prove I am not sick by taking on too much. I’ve made sacrifices and compromises both financially and professionally to ensure I am not in that vicious cycle again. I’m trying to set myself up now for a future that while promising, is not as certain as the present.

So there is some truth to what he said, certainly. I’m not sure I would have made those changes, would have matured in the same way, if I hadn’t had the diagnostic breakthroughs. But I also believe 100 percent that if I were still living my life the way I used to, I would be sicker. I’d be more run down so infections would hit me even harder. This is not wisdom or enlightenment so much as it is common sense, and I think it applies to anyone, regardless of health status.

(And yet if I were to run into a certain doctor from my past today, the tiniest part of me would want to tell him: It’s the holiday season. My grades are due in two days, and two huge freelance projects were due this week. I just sold one house and bought another (its own unique brand of home inspection-acquired stress) and my life is half-packed, the boxes stacked and ready to move three days before Christmas (good timing, much?). My computer died in the midst of the major deadlines, I’ve had the plague since sometime in July, and someone I love is having invasive surgery as I type. If I were to pick a stressful couple of weeks, it would be these.

And yet I am breathing just fine, thank you. Stress, huh.)

But of course I wouldn’t say it. I would nod a hello and go on my way, my indignance tempered by gratitude that at least I now know what’s wrong, and I know what choices I should make to keep me well.

An Open Letter to Non-Coughers

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This advice column in Salon—“There’s a cougher in the office and it’s driving me mad!” gave me a lot of pause, especially since the academic year is about to begin and I will soon be sharing a very small office with several colleagues and in front of classrooms of students.

As you’ll see, the letter-writer seems to think his co-worker’s cough is due to some sort of neurosis, not a physical condition. I can’t say whether that’s fair or accurate (somehow it seems unlikely), but I can say that for people like me, persistent public coughing is as much a nuisance for us as it is for everyone else.

You see, coughing is an occupational hazard of being me.

I am famous (infamous, really) for my cough. When it is juicy and tight, people in doctors’ offices grimace at the sickening sound of congestion churning around and politely ask if I’m getting over something. Some offer thoughtful but useless cups of water, others un-subtly move seats. “I’m not contagious, I’m just being me,” I’ll say, and I’m met with confused stares. I get lots of turned heads and cool stares in movie theatres and on the subway, in stores and restaurants. I blush, knowing people inch away from me thinking I am contagious and knowing this is not unreasonable of them.

When the cough is spasmodic and choking enough to land me in the emergency room, people in the waiting room practically trip over one another trying to move away from me, something I’ve dubbed the “ER Duck-and-Run.” Someone will quickly slide a facemask over me and wheel me past the triage bays and right into the ward, and I can still feel people’s eyes on me and their apprehension enveloping me as I am wheeled away. I’m torn between wanting to reassure them I don’t have SARS or something and wanting to say “I can’t help it, stop staring at me!”

But can I really blame them?

When my cough is dry, it is a hoarse bark, the kind of nail-splitting sound that ricochets off of walls and echoes obtrusively through quiet corridors. That cough is the one people remember most. It is the cough nurses hear long before they come through the ER doors and actually see me, the cough that makes hospital roommates discretely ask for a room transfer, the cough whose grating tenor disturbs family members visiting loved ones several rooms away. It is the cough that makes me excuse myself from my writing workshops and wander through deserted hallways until I find a place far enough away to absorb its sound. It is an almost shameful fame I have acquired by proxy of this cough of mine because I do not have the power to change what is so obviously uncomfortable for other people. I do not like that feeling.

So believe me, non-coughers of the world, people like me try to hold it in. We try to stifle it until we can duck into a bathroom, we make sure our mouths are covered, we are just as put out by the constant hacking and the rib-aching choking. We don’t mean to interrupt or irritate you, and we certainly don’t mean to be such a distraction. Coughing is our survival mechanism, the process we need to move the gunk in our lungs around, so while we hate it and it often hurts and we cannot help it, we also know we need to do it.

Thank you for the cups of water, for the smiles of understanding, for not moving your seat or shooting me a look. I promise I’ll try to keep it down, okay?

What’s the Deal with Dairy?

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I’m turning to you, thoughtful readers of the blogosphere, for some input on a decision that has been slowly building traction in the back of my mind for several days now.

Should I go dairy-free?

I saw my doctor this week, a follow-up appointment to see how I’ve responded to my antibiotics. My respiratory infection has definitely improved, but my bronchiectasis exacerbation from it is still pronounced, so I have a handful of new meds and inhalers to try and quell the chaos rumbling in my airways. I don’t even remember how it happened, but dairy came up in our conversation. Of course, I’ve long known that dairy is a mucus-producer, and if there’s anything I don’t need, it is more phlegm in my life.

“I really don’t consume much dairy,” I told him, sheepishly looking at my cup of coffee on his desk, which clearly contained milk. I don’t even like milk; even as a kid I never drank it on its own, it was merely a conduit to moist cereal, and as an adult, it’s merely a conduit to what I think is better-tasting coffee.

But when I thought about, I do have dairy often enough. I eat cottage cheese a couple of days a week because it’s a great protein source, and while I try to avoid cheese because of its fat content, I do have feta on my Greek salads regularly.

“Well, the less dairy you have, the better,” my doctor said. I nodded.

The seed was planted.

And then I stumbled across this site in the comments section on Kerrie’s blog (ironically, her original post included something I’d written about going gluten-free, so I’m now engaging in an amusing but totally productive game of blog-tag, I think 🙂 ) and I started to think about giving up dairy more seriously.

Enter the back and forth dialogue in my mind: It would certainly be a big sacrifice, lots of labels to read and accommodations to make. Yet so was going gluten-free, and you wouldn’t change that for anything, you know you feel so much better. Yes, but I have celiac disease, so clearly going GF would make me feel better–I am not lactose intolerant and don’t think I feel any worse when I eat dairy, so would I even see results? But don’t forget, you know you get more congested after frozen yogurt, so even if the only change was less phlegm and less exacerbation, wouldn’t that be worth it?

And, finally, the remaining question: But your diet is already so limited. Wouldn’t removing dairy make an already difficult dining situation (remember, one of your hobbies is trying new restaurants!) even harder?

Yes, but if it helped, wouldn’t it be worth it?

Leaving the dialogue in my mind alone for a second, what you do think? Is it worth a try? Is it something worth doing in degrees–eg, removing “big” thinks like milk, cheese, etc but not whey and all those little tiny ingredients that appear on labels? (This reminds me of people who go wheat-free but still eat many other forms of gluten). Would I still get any benefit, or, like going GF for a celiac, is it something that only works when you do it 100 percent?