A Question of Balance

“So what are your thoughts on alternative medicine?”

I was out to lunch recently when someone at my table who knew my medical history asked me that. I paused, trying to formulate an answer that was both honest and authentic as well as diplomatic enough to appeal to both sides of the issue since I wasn’t sure of his sensibilities—what surprised me was that my honest answer did that on its own.

“Well, here’s the thing. I wouldn’t be alive today without the help of Western [conventional] medicine, there’s no disputing that. But I’ve used acupuncture in the past for pain and fatigue and had great results, and it’s done wonders for my mother in terms of her shoulder and back pain,” I said.

I told him I knew people who swore by therapeutic massage and other alternative practices, especially for chronic pain and inflammation. Both my parents, recipients of the most cutting edge care in areas like cardiology, rheumatology, and oncology—my father is a walking advertisement for minimally invasive interventional cardiology—also book weekly appointments with an acupuncturist and rave about him.

“I guess what I’m saying is that a combination of both is ideal in my mind. I believe there are limits and drawbacks to conventional medicine, and I believe there are strengths and benefits to alternative medicine that patients should explore. It’s about balance, really,” I said.

For the past few weeks, I’ve been thinking a lot about that conversation and about this notion of balance. It’s only been in recent years that I’ve achieved anything close to balance in my life, having preferred for most of my life to try and do things in spite of my illnesses, rather than in consideration of them.

“Balance” is a loaded term when it comes to chronic illness: balancing the good days with the bad, the acute flares with the low-level hum, the doctors’ appointments with social obligations, the frustration with optimism, the desire to move forward with the awareness that you need to pull back, the momentum of inclusion with the stagnation of isolation. These are the “big ticket” themes, the ones that are at once the most popular to discuss and explore and the ones most difficult to sustain.

And yet there are all the little acts of everyday living, the choices and decisions we’re not even always conscious we’re making anymore that also speak to this notion of balance. I take several medications every day, as I have since I was born and as I will for the rest of my life. I appreciate how these chemicals help manage my conditions. But I also try to ingest things that even out the scale a bit: fresh fruits, huge amounts of greens and fresh produce, lean meats, lots of water, nothing processed, all things that are naturally good for my body. (Let’s ignore the caffeine issue for now, okay? I swear I have cut back, and I drink green tea, too!)

There are days when I do not have the lung capacity or the stamina to go to the gym, and on those days, I do yoga. I love the way it lengthens me, the way it opens up my lungs, how warm and taut my otherwise aching muscles feel. Ironically, what started as my default workout when cardio couldn’t happen has been wonderful for my dodgy lungs.

These things represent balance, but they have become so routine that I don’t stop to see them as such.

The work versus downtime ratio has always been my biggest struggle. Combine a perfectionist workaholic with the attitude of “I’m going to do it just to prove I can, that I’m not sick” and you don’t get a pretty result. I’ve made great strides; no longer do I compulsively look for additional jobs or take on too many projects, no longer do I feel that I “should” be doing more than I am or feel guilty about the choices I’ve made (most of the time, anyway.)

The past few weeks, though, there hasn’t been much balance between work and rest, between deadlines and, well, fun. Since the semester ended I have been plugging away on my book, all day, every day, seven days a week. I’ve plunged into Black Hole mode, only to emerge to attend my fellowship, send the occasional e-mail, or grab a late dinner on a Friday night with my husband—after getting kicked out of the coffee shop where we’ve both been working when it closed at 9pm.

For the most part, I love every minute of it, the intensity, the focus, the productivity. I apologize sheepishly to friends and family for my absence, and in those moments, I do feel guilty about my lack of balance. But I know it’s only a temporary thing, that in a few weeks I can turn the computer off for a bit and exhale….and I also know that for so many weeks of my life, I have surrendered everything to sickness and hospitals and chaos. Who knows, maybe this period of absorption is just another way of balancing things out…

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Serving Up Adrenal Insufficiency, “ER” Style

By now you know I am a collector of rare conditions–sure, people have heard of celiac disease or thyroid disease or various other members of my medical repertoire, but in all my faithful years of watching medical drama–ER, Grey’s Anatomy, etc–I’ve yet to see anyone with PCD or bronchiectasis stroll through the swinging doors of the set. True, I don’t catch each and every show, but I still feel pretty confident that for however varied and creative the ailments shown are, none of them belong to me.

Enter last night’s season finale of “ER.” After steadily declining for several hours in the ER, a hypertensive woman was on the verge of dying when the new chief of staff sauntered into the room and, while the other docs scrambled around, calmly plunged a nameless clear liquid into her IV line. Within seconds, the heart rate monitors stopped their urgent beeping and the woman opened her eyes. Crisis averted.

The doctor refuses to tell the others what the mystery medicine was until the end of the show. As he berates them about their shoddy job taking the woman’s medical history, he mentions the woman had been on steroids to treat a bronchospasm two weeks earlier.

I knew right where he was going with this one.

The hormones suppressed her system, and her adrenals crashed. The character of Dr. Abby Lockhart responded by saying adrenal insuffiency was so rare, as if since it was something they never see they weren’t accountable for not connecting the dots.

Welcome to my world. I was a little bit excited to see my adrenal issues get some TV time–the only other mention I’ve seen of adrenal problems was that awful Honda truck commercial where the guy suffers from adrenalitis, only to be cured by a brand new red truck, obviously.

But I also had a tiny bit of sympathy for the doctors who scrambled to figure out what was wrong with me three long years ago when I showed up unable to walk or even move my lips to speak…and a whole lot of gratitude for my rheumatologist, who figured it out as soon as she saw me.

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Diabetics Need Not Apply

Since diabetes and attitudes towards illness are often on my mind, I couldn’t resist posting about this article: a Massachusetts man, Gregory Hennick, who is diabetic and uses an insulin pump, was offered a job by Northampton Police Department, which later said “it was forced to rescind the offer after learning that he wears the pump,” according to the Boston Globe.

Apparently, anyone using a pump is barred from full-time police work in Massachusetts, yet the same rule does not apply to firefighters or to police officers who switch to the pump after they’ve been hired.

Let me get this straight…diabetics who manage their disease using the pump are not eligible to be hired as police officers. Those who inject insulin are, depending on the severity of their disease. Yet those who get the job and then decide the pump is a better option are still somehow better qualified for the job than people who used the pump previous to their employment? Here I was thinking that whatever method a patient found most effective in managing his or her disease was a good thing.

Is anyone else struggling to wrap their heads around the misguided logic at play in this policy? It’s not enough to treat diabetes as a disability, but to be so arbitrary and conflicting in who is allowed to patrol our streets, protect us from danger, or rescue us from burning buildings is maddening.

Hennick is filing complaint of discrimination on the basis of a perceived disability…I’ll try and keep you posted.

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Playing with Food

While it’s great to point out chains and restaurants that have gluten-free menus (oh the ecstasy of choice!), every now and again I like to pay some attention to those restaurants that are especially accommodating despite not being GF. This weekend, we went to a place that had the perfect balance of romance, “safe” food, and interactivity: The Wine Cellar in Boston.

The wine aficionado in me was overawed by the extensive wine list; even my husband couldn’t resist stating “A guy could get in some serious wine trouble here” several times as the night (and the drink tab) progressed.

But as seductive as the wine list was, it was the fondue that provided the real entertainment of the night. I’m the first to admit that when I think of fondue, images of my parents in their 1970s garb of polyester plaid and gargantuan shaded glasses huddled around a pot of bright yellow cheddar cheese come to mind. Okay, so maybe the only used their fondue set once or twice in their early years, but they are the point of reference I had for fondue at all.

Who knew food on sticks could serve as the perfect date night for a celiac girl and her foodie husband? The appetizer course was cheese (naturally), in our case a queso made of cheddar, cilantro, white wine, roasted red peppers, and onions. In addition to the bread, they served potatoes and, by request, steamed veggies. They made our queso with cornstarch, assuring us the only difference was that this GF version might break apart sooner. Our solution? We basically inhaled the entire pot before it even had time to separate.

“We just ate a bathtub of cheese,” I groaned, holding my stomach. “We’re disgusting.”

“Yeah we did,” countered my husband, clearly proud of our prowess, who lives by the motto that there is no such thing as enough cheese.

To our pleasant surprise, the entrees and their assorted dipping sauces were naturally gluten-free. Well technically, my first surprise was that fondue entrees involved anything other than cheese, but once I figured out that we got to select four meats and that everything they came with I could actually eat, our date night got even sweeter.

I’ve talked recently about how much my attitude towards preparing and consuming food has changed—I like everything fresh and healthy, I don’t take shortcuts or eat anything processed or artificial, I am deliberate about what I eat, when I eat it, and how it will make me feel. Part of this is a direct result of getting diagnosed with celiac disease, but part of it is because I married a man who taught me to savor taking things slow, to enjoy cooking as an activity and not merely as the means to supply and end to hunger.

For people who have been working seven days a week for a few months now and needed night to decompress, fondue was the perfect choice. There is nothing more deliberate or conscious than selecting which piece of meat to skewer and place in the steaming pot or broth and deciding how long to let it simmer. Eating a meal piece by slowly-cooked piece like that is an experience that magnifies this approach towards food, and it was fun. Yes, fun. We experimented with all different meat/sauce combinations, we realized that chocolate covered grapes were as delicious as chocolate covered strawberries, and we also realized that when you’re really paying attention to what you eat and who you’re eating with, three hours can elapse and you’d never know it.

The wine didn’t hurt, either.

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The Gluten Wars—To Ingest or Ignore?

A good friend of mine sent me this NYT article entitled “Jury Is Still Out on Gluten, the Latest Dietary Villain” early this week, and ever since then, I’ve read or listened to similar threads on this debate.

(Can I just take one second to acknowledge the overall awesomeness of my friends, who always have rice crackers on hand for me, consider my dietary restrictions when thinking about restaurants, and have been known to show up with GF desserts? You’re celiac experts now, and I really appreciate it!!)

Obviously, there is little debate here for people who have confirmed celiac disease—if we want to reduce symptoms and stop damaging our bodies, we can’t eat any foods that contain gluten. It’s pretty much a non-negotiable.

Luckily, as I’ve mentioned before on this site, finding gluten-free foods and businesses and restaurants that understand celiac disease, is easier than ever before. When I go to PF Chang’s, it’s specifically because there is an entire menu for me to choose from and I don’t need to worry about cross-contamination. When I do my weekly shop at Whole Foods, it’s because I know that whatever my mood or craving, I can find something that is both gluten-free and healthy.

Of course, this increased awareness of celiac disease is also tied to the fact that mainstream society has latched onto the idea that gluten-free living is the way to go. It’s the latest trend, with people ditching office pizza and processed food for GF fare. People with symptoms that resemble those reported by celiac patients who test negative for the disease—they consider themselves as having a “subclinical gluten sensitivity,” according to the NYT article—say they feel better when they go GF anyway. Others report that symptoms of other autoimmune diseases like arthritis decrease once they go gluten-free.

The experts are still teasing out the connection between gluten and the types of success stories non-celiacs trumpet. I’m happy to leave that quagmire to them, but I do think it’s important to consider a very basic fact alluded to in this most recent article, one I’ve been championing for a couple of years now. What if part of the reason people who do not have celiac disease but feel better when they go GF has less to do with their physiological sensitivity to gluten and more to do with the fact that the GF diet is, on the whole, a lot healthier?

Think about all the “staple” foods that contain gluten—breads, pizza, pasta, etc. A huge amount of junk food, from fast food hamburgers or “chicken” nuggets to cookies and doughnuts and fried food, contain wheat or other grains with gluten. Is it all that surprising that if you swap out breads and fast food for salads, vegetables, and un-friend, un-sauced, unadulterated proteins you just might feel better?

Here’s the anecdotal evidence I can offer: two years ago, I convinced my diabetic and otherwise medically-challenged father to go GF for six weeks. I went over the list of “safe” foods, I taught him what to look for when reading labels, and I went grocery shopping with him to help him begin his new lifestyle. I should add here that his diet was fairly healthy to begin with since he’s a diabetic heart patient—lots of fish, veggies, etc, and when he ate starch like wheat bread, pita bread, or pasta, it was usually in moderation.

Within two days of going gluten-free, his body’s demand for daytime insulin dropped by 50 percent. Yes, you read that right, 50 percent. And what’s more, he sustained that decrease over the six weeks. It was a struggle to adjust and he did need a few days to get a handle on middle of the night blood sugar drops, but he lost some extra pounds, had more energy, and needed less insulin.

Does he have celiac disease? No. But did eliminating excess starch and processed food impact his health in a positive way? Absolutely.

Getting diagnosed with celiac disease has totally changed my approach towards selecting, preparing, and consuming food. Everything is fresh and, well, whole now. I make my own chicken stock, eschewing the salty, processed kinds. I make my soups and chilis from scratch, avoiding the gluten-y store-bought kinds that I can’t imagine eating ever again. I have fresh vegetables with every lunch and dinner, and I take it as a matter of pride that nothing in my kitchen has an ingredient list of more than, say, four or five items.

The jury may still be out on gluten and the masses, and maintaining a GF diet can certainly be challenging and frustrating, but when I wouldn’t trade my GF attitude towards healthy eating for anything.

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Timing (Sweet) Timing

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?

“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

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…

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!

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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