Category Archives: PCD

Tales from the Crypt…

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Contrary to a certain famous modern poet’s assertion, in my world November is the cruelest month. Okay, it’s arguably a toss up with December-February, too, but in terms of the lovely cycle of getting sick, falling behind with work, and missing family functions and/or social engagements, November is right up there with the best of them.

This past weekend was no exception: the tightened chest and spastic cough of Thursday night developed into the mini-plague that prevented me from attending a long-awaited family function Sunday morning.

(It’s not H1N1, though. Still hoping I avoid that long enough to get my H1NI vaccine.)

Anyway, I had to make a phone call early Sunday morning to let relevant parties know I would not be able to make it. My throat was hoarse and scratchy from coughing, and my voice itself was fairly faint because I wasn’t moving much air. It was definitely Crypt-keeper quality (as opposed to my other alter-voice, Darth Vadar, which is a little deeper and usually sets in a good two to three weeks later.)

My two-year-old niece loves the phone these days, and when she heard it was me on the other end, she wanted to say hello.

I started talking (read: rasping) to her as best I could, asking the kinds of questions two-year-olds are usually pretty good at answering.

Pause…pause….pause….

“Broken. Mama, it’s broken,” I heard her say.

“Not working,” she muttered, her voice growing muffled and distant as she pattered away.

Couldn’t have said it better myself.

On H1N1, Vaccines, and Differing Views

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I haven’t written too much about H1N1. Partially, this is because as an avid reader and headline scanner, I suffer a bit from H1N1 fatigue. From local news reports to national updates to reminders and policy talk at my job, H1N1 is everywhere.

But it’s also because everyone seems to have an opinion about the H1N1 vaccine. And lately it seems I can’t go anywhere without getting a hearty dose of other people’s strong opinions about it in my face.

It’s a controversial topic for many, and I get that. I respect other people’s right to make their own decisions about their health. The thing is, I don’t need to agree, or be convinced my own decision about my health is wrong. So when I’m getting my blood drawn and stressed about getting to work on time because the line is long and my veins are wily and unyielding, I don’t really need a lecture from a health care professional on how flu shots are full of toxins and poisons we shouldn’t put in our bodies. (While flanked by posters advocating flu shots, by the way.)

You might be drawing my blood, but that doesn’t mean you know anything about my health or my personal beliefs, or how I might interpret your unsolicited “advice.”

The same goes for the forwards and attachments that appear out of the ether in my inbox warning me against the evils of vaccinations.

Because you know what? I would do anything for an H1N1 shot right now. For months every single doctor and nurse on my medical team has repeated the same mantra: I am absolutely high risk and should get the shot. The problem is, they just aren’t available yet. I have reason to believe I can get one in the next month, so if I can avoid infection until then, I will be in good shape.

At the same time, it is not as possible for me to read the headlines but stay on the sidelines. Students in my classes now have the flu, and each time I get an e-mail about a 104-degree fever I worry about them, and about how many of us were exposed.

I am not a paranoid person, and considering I spend 7-8 months a year continually sick, I am pretty used to infections. Generally speaking, I take reasonable precautions and reasonable risks with my health.

After I read this NYT article on parental views about the H1N1 vaccine, I knew I couldn’t resist the pull of breaking the silence any longer. In discussing society’s willingness to be vaccinated during twentieth-century epidemics like polio and smallpox, historian David Oshinsky is quoted as saying, “People had a sense of risk versus reward and listened to public health officials.”

That line really resonated with me, because that’s how my doctors and I have approached the H1N1 shot. For me, the risks of contracting H1N1 are much, much more severe than any risks of getting the shot. (And yes, I get the seasonal flu shot every year without incident, and since they are made the same way, I personally do not have fears about the production of H1N1 vaccines.) Vaccination and communicable disease prevention are some of public health’s greatest triumphs, in my view, and I am incredibly grateful modern medicine gives me and my sub-par immune system some protection.

After all, otherwise healthy people face serious complications from H1N1, usually in the form of secondary bacterial infections (pneumonia) that linger because the flu virus damages cilia in the respiratory tract.

I don’t have working cilia. I also have bronchiectasis, which increases the likelihood of bacteria and mucus festering in my airways, causing severe exacerbations. That sounds like an awesome combination, doesn’t it? I can catch a cold in September and not recover until March, and I’m not exaggerating. I’ve almost died from infections on multiple occasions throughout my life, and have spent weeks in isolation units of hospitals. There are few antibiotics left that can squelch the secondary bacterial infections I am so good at growing. As much as my friends joke I need to live in a bubble, I can’t.

But if there is a way for me to prevent contracting H1N1, sign me up. This is the decision that makes absolute sense for my individual circumstances, and it is one every medical professional I know espouses.

I know every person’s situation is unique. For example, I know that for patients with certain autoimmune conditions, the risks of getting a flu shot are very real and very serious, and I would never presume to convince them otherwise.

But that’s just it—these are the kinds of conversations that should take place between doctors and patients, between the people who know the most about an individual’s medical history and constellation of risks. When people do ask me, I am always honest about how I feel about the shot for me, but emphasize I am not a medical professional.

I’m not saying I’m unwilling to engage in dialogue or debate about this, but there’s a difference between informed views on subjects and imposing personal views on other people. I know vaccination in general is a hotly contested topic right now, and there are so many voices on both sides. I don’t want to start shouting. Honestly, I just want to get my shot and get through this winter.

So please, please don’t assume to know the particulars of my situation and tell me I am crazy to pump my body of toxins. No matter how strongly I feel about opposing viewpoints on this, that is not a productive way to have a conversation.

And the way I see it, I’d be crazy to turn down the chance to protect my dodgy lungs.

In the Headlines, In Real Life

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My writing may be a little more erratic than normal right now, but I still try to stay on top of the headlines. It’s the journalist in me; a day doesn’t feel right if it doesn’t start with skimming the newspapers, no matter how early. Every now and then, I come across stories that directly resonate with what’s going on in my own life.

As a New Englander, I am acutely aware of rapid and drastic seasonal changes and their effects on my lungs. I suffocate in humidity, cold winter months mean lots of infections, and the gray area between summer and fall and winter and spring are predictable only in their unpredictability.

I steadfastly maintain two truths about the weather and my health: my lungs are as accurate a barometer of weather changes as an arthritic’s joints, and the reason I did relatively well when I lived in Dublin was because although the weather was consistently dismal, it was consistent. No huge swings, no choking heat, no bone-chilling lows.

Anyone else sensitive to weather fluctuations?

Now, as I wrote awhile ago when I started this blog, I do not have asthma. However, when I read this NYT article on asthma and weather changes yesterday, I nodded along in agreement. The study found it is not just environmental or allergic factors that contribute to asthma symptoms:

“The study authors noted that many patients are well aware that weather fluctuations influence their asthma symptoms, but this is the first study to document the effect. In addition, it wasn’t just cold weather that triggered asthma problems but temperature increases as well.”

It’s what I’ve always known about my some of my own lung symptoms—wheezing, congestion, etc—even if they are caused by bronchiectasis exacerbations and PCD. Right now, I’m sitting here in summer-like conditions with newscasters warning of a big chill tomorrow—but I already knew that was coming. I could feel it in my chest.

***
Switching gear a little bit, I was so happy to see this wonderful newspaper article about the Chronic Illness Initiative at DePaul University. I have strong feelings about chronic illness and education. From students being proactive, anticipating their needs and problems, and communicating regularly to faculty and administration being flexible and accommodating, there are many steps we can take to ensure that students with chronic illness achieve their educational goals.

Luckily, the Chronic Illness Initiative (CII) is an institutional resource that helps both students and faculty navigate these complicated issues, and enables students to complete their degrees at an appropriate pace for their medical needs.

I’ve written about the CII before, but this recent article was particularly compelling to me because I spoke at a Symposium there last spring and was fortunate enough to meet several of these students, including some interviewed in the article. I was impressed with their commitment to education, but also with their enthusiasm for the CII itself.

Even more, this fall I’m actually teaching an online class through the School for New Learning at DePaul, the same school that operates the CII. It’s a class that explores how people with chronic illness exist in an otherwise healthy world (the personal and institutional challenges), and there is definitely crossover between the goals of the CII and course content.

It’s a great article, and personally, it is neat to see when headlines and real life intersect.

On Invisible Illness

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This week is Invisible Awareness Week, and my post about it is a day later than I wanted it to be, which is right on par with the way things are going right now.

In fact, I wasn’t planning on just posting about it; I was scheduled to present a virtual seminar this week and due to intense schedule conflicts, and with great regret, I had to cancel. (I’m already percolating ideas for next year, so we will see…)

I’d originally planned this post to be a continuation of the conversation about illness versus disability I’ve had here on A Chronic Dose. To wit, I recently sat through an HR orientation and was pleasantly surprised by the time and attention the speaker gave to “invisible” conditions.

But that post didn’t work out as planned, either, though I do promise to return to it.

Instead, though it’s a day later than what I wanted and not neatly focused like I’d planned, all I can do is write about where I am right now.

Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?

I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.

I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)

But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.

And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.

I’m a writer. I’m also a consultant, an editor, a professor, and a patient. Sometimes those roles overlap, like when I was asked to teach a course using my first book as a core text. (Talk about the personal and the professional colliding. I might have more to say about that later.) Often, the roles aren’t as blatantly converged, like when I sign on new freelance editorial clients, or when I stand in front of other classrooms and hand out syllabi and the only way anyone might know about my patient experiences would be if they Googled me. (Hello, potential Googlers!)

Clearly it’s no secret, but this part of life is something I leave outside the classroom and client conversations. This division is frenetic, but necessary.

I thought about how I wanted to be identified by others (which of course is much more about how I want to see myself), and the whole notion of public versus private while I waited for my new physical therapist to arrive last night.

My normal therapist is away, and I haven’t had anyone besides him for six years. (Yes, I am spoiled.) Having a health care provider visit your house is such a different experience than going to a hospital for treatment. A complete stranger comes into your living room, performs a rather physical treatment on sensitive body parts, and is witness to all minutiae and vulnerabilities of private life: the mail on the front table, the barking dogs, what you’re making for dinner, and often, what you look like in pre-dawn hours when your glasses are still on and your pajamas don’t match and you reach for the spit cup.

“So how was your day?” she asked when we were settled into position, as if we were picking up from an earlier conversation. Because you know, that’s what you do when someone you’ve known for about 90 seconds is thumping your chest and it’s dinner time and your dogs are slamming their bones on the hardwood floor, begging for attention.

“Long but productive,” I said. And from there we talked about where she lived and how I worked near there. We talked about writing and teaching and graduate school, and we talked about rescue dogs and traffic and commuting.

And even though she was there because I have PCD and bronchiectasis and I was literally choking in phlegm before she arrived, it didn’t really come up.

It wasn’t that my illnesses were invisible (um, hello hacking cough and vigorous clapping) but they were not defining.

The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out.

One day at a time.

So Long, Summer

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It’s been an usually long time since I’ve written—somehow, life and all its unpredictability conspired against me in terms of writing time.

And in the past several days, while I was adjusting to major work changes and family health stuff, entertaining visiting friends and making doctor appointments (because the good always accompanies the not-so-good, which keeps us sane and moving forward, I think) summer somehow slipped away. The cold, rainy weather of this past June and July and the two-week sweltering heat of late August did not constitute a real summer to my New England psyche, so today’s brisk temperatures and distinct autumnal crispness feel a bit hollow—you can’t say goodbye to those stereotypically lazy, hazy days of summer that really never happened.

As you know, I’ve been dreading the return of fall and winter in a way I never have before. Normally the choking humidity of summer in Boston and the luster of the promise of a fresh new start is a powerful combination that leaves me pining for September by, oh, July 4th. Seriously. I used to be the kid who had all her school supplies bought (hello, Trapper-Keepers and erasable pens) and organized by mid-July.

This year, not so much, but for good reason. I didn’t have any serious infections or freak medical calamities, which was a refreshing change. I got to sit next to President Clinton and talk about health care reform, and celebrated my fourth wedding anniversary. I woke up and on most days, I was able to complete the tasks I wanted. The daily maintenance and ministrations of chronic illness were white noise, routine parts of my life that did not define my life.

I want this trend to continue, despite the shorter days, the copious amounts of germs that accompany winter, the threat of H1N1(I’m not paranoid, just acutely conscious of my risks, just like I am with regular seasonal influenza), etc.

As I think back to my last post on hope (forgive the stream of consciousness style of this post), I’m reminded that we never can tell how things will unfold, personally or professionally. All we can do is move forward, do our best to minimize the variables we can control for, and adjust when necessary.

I have a medical plan in place to try and prevent another winter like last year, and more than that, I have a lot of things to look forward to this fall: new career challenges in academia, moving forward with my book, etc. As much as I’ve been willing time to stop lately, it hit me when I dropped some of my fall clothes off at the dry cleaners last night: that queasy feeling of anticipation.

September’s here, and I have every reason to believe (or to hope) it will be the start of good things.

***
Speaking of new changes and things to look forward to, I’m pleased to announce that my friend and colleague Jenni Prokopy from ChronicBabeand I are starting a radio show this fall. The Chronic Truth will debut in a few weeks on BlogTalk Radio. It will feature a variety of topics (diagnoses and doctors, relationships, health reform, etc), and will include guest experts, listener questions, etc.

We’re both really excited to collaborate on this (we had a blast doing our podcast) and will get the rest of details out to you as soon as we can.

On Listening and Judging

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I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.

As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.

I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.

I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.

But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.

It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.

Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.

Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.

When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.

But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.

Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.

Does that make me a hypocrite? It might, and I accept that.

Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.

Don’t Know What You’ve Got Till It’s Gone

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I didn’t realize just how little energy I had as a result of my malfunctioning thyroid until I started taking thyroid medication—it was the kinetic equivalent of putting on a pair of eyeglasses for the first time. Everything was sharper, clearer, more focused.

It was a whole new world. Can you relate?

I didn’t realize just how awful (sluggish, congested, weak) I felt when I ate foods containing gluten until I stopped eating them, and immediately ditched the sinus headaches and malaise. Similarly, I didn’t see just how foggy and gross I felt eating foods with sugar (wine, fruit, vinegar, etc in my world) while on suppressive antibiotics until I eliminated all sugars from my diet and no longer got spacey or clammy or had palpitations.

Five years apart, these experiences opened up “whole new worlds” on their own—not without sacrifice, but totally worth it. Have you been there, too?

And of course, I couldn’t tell just how much the muck festering in my lungs clouded over everything and constantly made me feel awful until I started treatments that actually addressed it—postural drainage, chest physiotherapy, etc—instead of just throwing steroids at it and hoping the infections would subside.

It was a whole new world, one that didn’t automatically include multiple weeks in the hospital every year. Have you experienced that type of profound relief?

Sometimes you just don’t realize how bad things were until you do something to correct it, until things are different. When it comes to medical stuff, this isn’t always a bad thing. After all, if we can look back and compare a “before” and “after” favorably, then we’re doing something right; we’re treating the right thing or implementing the right therapy or making the right lifestyle choices.

And right now, I’m experiencing a related type of gratitude. It has been two months and change since I was acutely ill. That’s right, 10 weeks of relative normalcy, a huge step given that for the past year or two my stretch for bad infections had been about two weeks at the most. The few infections I’ve had have been much more minor than normal, so beyond the daily coughing/wheezing and maintenance, my various conditions have been really stable. Part of it is because my “bad” season is over (September-May), part of it is because I am out in public less during the summer (no commuting to germy college campuses), and I know a huge part of it is because of the very aggressive treatment I’ve almost completed.

Whatever the constellation of factors is, I’ll take it.

I forgot what it was like to be able to accomplish a lot of the things I want to do every day, or to make plans without hesitation or fear I’d just have to cancel, or to go to gym and know my lungs and body will hold up their end of the bargain. I forgot just how great and necessary it is to see friends in person, and be part of family functions, or leave the house and do fun things with my husband on the weekends.

Only now that the vortex of that long, awful winter has finally released me can I say that I didn’t realize what an effort simply getting through the routine of daily life was until it was no longer an effort.

And I love this feeling. It’s a whole new world.

Can you relate?

When the Familiar Becomes Something New

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We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I’d spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)

Thank Goodness I Like Vegetables

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I realized just how much my lifestyle has changed over the past few years when a recipe for a weekend dinner party called for sugar, and I didn’t have any. Nor did I have artificial sweetener, artificial sweetener that looked and tasted like sugar, or anything else sweet, save the maple syrup we bought for when my niece slept over several months ago.

On the one hand, I felt a bit domestically delinquent. We usually had some on hand for company, but beyond that, isn’t sugar one of those staples every kitchen needs? Then again, we don’t usually have flour of any kind, either.

As I’ve written before about the evolution of my gluten-free life, I’m more the “explore naturally gluten-free foods” type of girl than I am someone who looks for gluten-free versions of “normal” food—but I recognize that’s just personal preference and that each person needs to do what makes the most sense for his/her circumstances.

Lately, it seems like celiac disease is popping up everywhere. Of course, there’s a certain celebrity’s newly published book stirring up a lot of comments, but there’s more to it than that. The other day at Gluten-free Girl, Shauna mentioned how many new products and companies are now on the market offering gluten-free baked goods, mixes, etc. In my own area, I’ve recently discovered that restaurants like Papa Razzi and Charley’s offer gluten-free accommodations, and I love hitting up regular spots like Jake’s Dixie Roadhouse, which has a GF menu and strict cross-contamination measures.

What’s more, the amount of people around me who know what celiac is or have just gotten diagnosed with it is growing.

“Do you think it’s like food allergies, where more and more people get celiac now?” someone asked me.

“Honestly? I’m no expert, but celiac is so often missed because it is so tricky to diagnose. I think the reason more people are now told they have it because awareness has grown; patients think to ask their doctors about it, and doctors think to check for it, even when “classic” symptoms might not be there,” I said. These are people who may have suffered for years without knowing why.

Anyway, all this is to say that much has changed since I was first diagnosed five and a half years ago. I can’t believe it has been that long. I’ve learned how to make a lot of new foods, I go out to eat without fear or hesitation, we’re growing our own vegetables in our yard, and I’m even in a supper club whose members view the challenge of GF cooking as a good one.

But now there’s a wrinkle. No, it’s not dairy; I cut that out two years ago. No, it’s not processed food; that went out the window a long time ago.

I’ve mentioned before what an soul-crushing, lung-battering winter I had this year. (Okay, maybe slightly dramatic, but it was Not. Good.) As a result of that seven-month siege, I am on a very aggressive, very long-term suppressive course of rotating antibiotics. I don’t talk about it much because there are so many strong opinions about these medications out there, and yes, they are overused by people with colds and yes it’s a problem…but for people like me, they are, quite literally, a lifesaver. Not only do they save lives in acute infectious situations, but they can also help slow down irreversible lung damage. If it’s a choice between several weeks a year as an inpatient and trips to the ICU and suppressive treatment that actually gives me some quality of life and helps control the many infections I get, it’s a no-brainer.

But my aggressive treatment is not easy on the body, most notably the stomach. As evidenced by lots of GI issues and a lovely film on my tongue, my long-term use of these meds has given me candida, an overgrowth of yeast in the intestinal tract (it happens when meds kill the healthy gut bacteria) that spreads throughout the body. Lovely.

The treatment? Well, coming off the meds isn’t an option right now, so I’m trying to follow the candida diet, which essentially means eliminating all sources of sugar, yeast, and fermentation in the diet. Now, clearly I don’t eat a lot of sugar but it’s more complicated than that: naturally occurring sugar in fruit is out; vinegars, salad dressings, honey, tomatoes, white starches…all out. The list goes on, trust me. Again, not the biggest deal since I don’t eat some of this anyway, but if you’ve read Life Disrupted you know how I feel about my honey mustard dressing.

Now, my lunch of green beans and chickpeas is a bit sad and lonely.

“Um, so what do you eat?” a friend asked, knowing I limit animal protein to once a day.

The list is short.

When I was first diagnosed with celiac, I never went through an angry stage or mourned all the things I couldn’t have; I was ecstatic there was something wrong with me I could actually fix. (This doesn’t happen often in my world.) I’m channeling that sentiment to this latest dietary challenge—I feel pretty crummy so if taking these steps can improve things even a little, it’s totally worth it to me.

But if you have any pointers, I’m listening.

A Better Place

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This past weekend, I opened up my office window and let the warm air fill the stuffy room. It was a gorgeous day where the sun was high and warm but the breeze kept the heat from being oppressive. Later, when we took a break to walk the dogs around a nearby pond and I blended in with the cyclists and joggers and hikers, I even felt healthy.

(Okay, so maybe I coughed up half a lung when we got home, but productive coughs are a good thing in my world.)

More than that, I felt so far removed from the long, hard winter (well, fall, winter, and most of spring) I’d left behind me. In my consciousness those months were wrapped together underneath a disorienting haze, in sharp contrast to the bright sunlight, blue sky, and green grass before me. Nothing about them was distinguishable, and I preferred the abstraction of it. It proved to me there was enough distance to solidify the change I felt: the change in seasons, the change in infection level, the change in medication protocol that, while challenging, is definitely worth it.

This morning I awoke to chilly temperatures, a gray sky, and intermittent rain. Not a big deal, and certainly conducive to working through a heap of writing and editing.

But for one brief moment, as I kicked water off my sneakers and unzipped my sweatshirt, I suddenly had a very vivid image of the winter. One specific day in winter, one that stood out again in my mind just as definitively as the bright sunshine that lit up my office just days before, and one that is emblematic of the whole seven month period:

It was a Thursday. I remember watching the snowfall total in the morning and praying, praying classes would be cancelled because I felt terrible but I’d already cancelled them the day before due to illness. I knew I couldn’t scrape by managing them online again. My peak flow readings were so far into the red zone I wouldn’t even tell my physical therapist what they were (but they’d been like that for days so I’d adjusted to it.)

As the snow gave way to icy, freezing rain that turned the roads from slick to downright treacherous, I knew using our tiny little car wasn’t an option. The walk to the subway station is normally very short, but between the snow, the ice, the heavy bag, and the lack of lung capacity I had from the acute infection, it took me 25 minutes. Getting through class took every remaining ounce of energy (and oxygen, apparently) and what I remember most from when I exited the building was this:

I was stuck. It was now nighttime, and there was no way I could get to the (nearby) subway stop and get home. Not with this bag, this infection, these lungs, this tired body, and not in this frigid slushy mix.

(And my stupid galoshes were leaky. Sure the pattern ones look all cute, but they can’t hack it in New England.)

I needed my nebulizer, I needed air, I needed my briefcase to not weigh so much, and I really needed it to not be snowing/sleeting/raining/icing. I probably needed IV antibiotics too but that particular conversation would happen a few weeks later.

Or, I needed my husband to come and get me, snaking his way through city traffic to take my bag and my hand and somehow get me home.

And of course he did, and of course we made it home, and of course I’d been in situations far more serious than this. But for some reason that night, the commute, the cold, wet feet, the bloody cough, the absurdly heavy bag, the rawness—they all conspired to wear me down in every way.

Maybe it was just the chill in the air today that made me remember how raw I felt that night, or maybe it was the wet feet. Whatever triggered the memory, it was brief and fairly inconsequential, filed away for a blog post later today but otherwise buried underneath morning headlines, client specifications, and e-mails.

So why go through the process of describing an event that ultimately has little impact on me now? (Other than to flex my descriptive writing muscles after hours of more technical writing and research, that is.)

For a project on gender I’m researching the relationship between chronic illness and PTSD. At first, I was looking at the potential emerging link between PTSD in soldiers who have seen combat and the development of chronic illness later in life. But as I dug deeper I found another wrinkle, one that hadn’t even crossed my mind: formerly healthy people who developed PTSD as a result of sudden, life changing (and often excruciating and traumatic) illness. For patients like this who improve and then later relapse, even if it is not as severe a relapse as the initial event, the worsening symptoms can serve as sort of a trigger that brings them back to the horrible moment where everything changed radically, or back to moments of unimaginable physical pain, etc.

(I’m summing a lot of this up and probably not eloquently but hopefully it makes sense.)

It wasn’t a phenomenon I’d heard of before. And clearly my little example of wet feet making me think of a nasty infection and a nasty storm is just that: a little example of the power of memory and of certain details to bring us back to a different place. I’m lucky the place I went to wasn’t bad, just a blip in a crummy winter, something I could use as stand-in for an experience that is not mine. I’m lucky to look back and say,”I’m in a better place.”

If any of you out there do have personal experience with this, though, I’d love to hear your insights…