Wednesday, December 27, 2006

Family Traditions

I just got back from spending Christmas with my in-laws in Michigan. It was a wonderful trip—we visited with relatives we don’t see much, we ate lots of good food, and we spent time just relaxing and catching up with my husband’s parents and family.

It was the first Christmas I didn’t spend with my side of the family, and the differences were compelling. Of course, there were obvious ones: Christmas Eve was much quieter and peaceful than the boisterous, crowded Italian Christmas Eves of my past. There was no spaghetti, meatballs, or traditional fish dishes, but there were plenty of delicious roasts, potatoes, and desserts like apple crisp. Instead of the frenzied gift exchange, we opened our gifts one by one; instead of Midnight Mass, we went to a 5pm Lutheran service—and I loved every second of it, just like I love the traditions I’ve known since childhood.

Over the course of the four days, I couldn’t help noticing lots of other fundamental differences, namely that for the first time in my life, I saw what a healthy Christmas looked like for a healthy family.

My mother-in-law cooked meal after meal, and was able to chop, mix, scrub, and lift. Between her spine problems, reconstructed shoulders, and bone-crushing degenerative joint disease and advanced rheumatoid arthritis, my mother hasn’t been able to do any of these things in such a long time. My father-in-law spent time clearing brush in the backyard, moving large limbs and getting his hands dirty. When he was done, he went on a walk with us and then helped vacuum the living room. Between his muscle disease and his heart problems, the weakness, pain, and fatigue that physical exertion often causes my father means he can’t do things he’d like to do, like putter in his own backyard, move things for my mother, or run to the grocery store without paying for it later.

I wasn’t used to long car rides or shopping trips that didn’t translate into a day’s recuperation, or how getting the house ready for company didn’t mean being in so much pain afterwards that sitting up seems like a monumental effort. I wasn’t used to not having to build in extra time to recover from tasks, or not worrying that a family party would do more harm than benefit to my parents. There was no nausea from chemotherapy, no heating pads or ice packs to procure, no last minute prescriptions to pick up at Walgreens, no stress or frustration or struggle.

In essence, I wasn’t used to daily tasks and holiday preparations being so effortless, to life being so calm and even keel. And in the middle of all the celebration and tradition, I felt a twinge of sadness for the family I left in Boston. They would trade all the Christmas gifts in the world for one day of living like this, and for everything they do have—joy, love, support, friends, etc—this is the one gift they will never have. They don’t resent or lament that, but once I saw what it could be like, once I saw how the healthy lived, I couldn’t help but wish for it for them.

Thursday, December 21, 2006

Genetic Ignorance?

Genetic Ignorance?

I read Alex Beam’s column in the Boston Globe the other day all about radio talk show host Jan Mickelson’s incredulous rant against diabetics. As quoted in the article, Mickelson told Type 1 diabetic and radio guest James Hirsch (whose son is also diabetic), “I know the desire to reproduce from your own gene pool is almost overwhelming…But what if you know have the shallow end of your own pool? …If you are genetically flawed, just don’t reproduce. That’s just being a bad citizen.”

While Mickelson later admitted he confused Type 1 and Type 2 diabetes, his eugenics-based approach to solving health care problems remained both steadfast and confounding.

Obviously there are so many angles and ways to respond to Hirsch’s vitriolic and illogical argument. It is a topic we discuss often in my writing courses that explore constructions of health in contemporary literature. The more we find out about diseases and their genetic components, the more people like Mickelson can use burgeoning science as an ill-formed argument against reproduction. In response to diabetics being labeled as “genetically flawed”, Hirsch countered with the examples of breast cancer patients and those stricken with Alzheimer’s—after all, no one would apply such labels to these patients despite the genetic basis of those debilitating conditions.

If that’s the case, then what about heart disease? Certainly genetics plays a role in cholesterol levels. Or celiac disease, an autoimmune disorder with a strong genetic component? Or extend that line of thought further—what about poor vision, ADHD and other learning disabilities? All these things have genetic links. Where, then, should we demarcate the line that separates the “shallow” end of Mickelson’s pool from the more appropriate deep end? Who decides which variations and mutations are permissible, and which ones banish us to the bottom of the reproductive chain?

I can take this topic out of the news and out of my classroom because it is one that has a stake in my own life. Many of my health problems—including the potentially life-threatening ones—are genetic ones. Though both sides of my family have complicated medical histories, no one on either side has anything close to primary cilia dyskinesia—and yet here I am. Perhaps I am genetically flawed in the eyes of people like Mickelson, but I don’t see it that way.

Telling people with certain diseases not to reproduce misses the mark on so many levels. Labels and categories can never fully encompass all the things that underlie questions of health and wellness, and viewing the genetic code as textual errors to be re-written is shocking in its exclusion.

We’re thinking about having children, and while I have a lot of concerns, I am not worried about passing on my PCD to my children. They may get their grandfather’s high cholesterol or diabetes, their father’s dyslexia, their mother’s celiac disease, or, also like their mother, they may be born with something no one in the family has seen or had before. If they’re lucky, they’ll also inherit their grandfather’s drive and determination, their mother’s memory and resiliency, their father’s compassion, wisdom, and intellect. Whatever combination of genes—of variations, mutations, quirks, and talents—they have we’ll take, with gratitude.

Luckily for all of our sakes, ignorance isn’t something that is inherited. Unfortunately it exists, but only in those people at the “shallow” end.

Tuesday, December 19, 2006

Mourning Thoughts

I found out last night that the father of a friend of mine died suddenly the other night. Obviously all death is tragic, but there is something especially unsettling about unexpected death—the lack of warning, of preparation, the inability to say all the things we’d say if we had the chance.

Naturally, this terribly sad news made me think of my own father, currently in the midst of a flare-up of his polymyositis and still trying to improve his renal function. He has flirted with death more times than I care to elaborate, and when I consider the many life-threatening conditions he’s battled for so many years, I can’t help but wonder just how much more his body can take.

For people whose lives are dominated by chronic illness, sudden death is so disconcerting because it flies in the face of all the things we do each day for our health. I’ve watched my father test his blood sugar, inject himself with insulin, endure the nausea and ill effects of chemotherapy, and work against the pain and fatigue of muscle disease for years. I’ve picked up his blood pressure, gout, and cholesterol medications from the drug store, and I’ve visited him in the cardiac unit after his catheterizations, angioplasties, and stent insertions. All the things he does to stay alive could wind up becoming his entire life, if he let them.

And all the things he does for his health reassure me that he, that we, have some control over what happens, that if we plan and dose and medicate and recuperate, we can keep death at bay and our bodies can keep bouncing back. Sudden illness and death is so scary for that exact reason, because it defies planning or preparation or proactive approaches. But perhaps the day to day grind of chronic illness, the whispers and tuggings that our conditions bring into our lives, can also combat that most sober of reminders.

No matter how short or trivial the conversation may be, I never hang up with my father (or my mother, husband, or brothers) without saying “I love you". I do this not because I am thinking catastrophically that it could be the last time we speak, but because I have learned not to take anything for granted—illness as well as health.

Monday, December 18, 2006

Homeostatic Haywire: How Steroids Still Sideline Me

Temperatures are a little off right now. It certainly looks like Christmastime in Boston—the trees downtown are lit, wreaths adorn street lamps, and the Frog Pond is iced over for skaters. Yet I have only had to wear my winter coat and gloves on one occasion, I haven’t seen my breath in the cold once, and just this weekend I spotted people wearing flip-flops. Despite all the griping I do when I have to shovel my car out of the snow, the unseasonably warm weather is, quite frankly, disconcerting.

Equally disconcerting? My internal temperature gauge, which is mired in its own homeostatic haywire. What was once a once or twice a week phenomenon now occurs almost nightly: despite layers of clothes and the fact that our condo’s pre-set heating system is blasting even though it’s warm outside, I get cold and clammy. Actually, it’s more like I am dripping in sweat. My face turns deathly pale, the palpitations begin, and I can barely string sentences together I am so exhausted. Sometimes I feel it coming on, other times it can happen within a matter of minutes. Either way, when it hits me, I am totally drained for hours, sometimes days.

When my temporary adrenal problems improved after two years, I’d been hoping these weird daily drains would dissipate as well, but no such luck. Certainly, plenty of things could contribute to this upsurge in symptoms—multiple current infections, chronic fatigue, the end-of-the semester crunch and general holiday craziness. But when I discussed all this with my doctor last week, it turned out my favorite ghost still haunted me: steroids.

Now, I’ve railed about steroids, deplored them, and alternately owed my life to them in previous posts, so I’ll save that for another time. Since I’ve cut way, way down on my steroid use in the past two years (oh, the wonders of having correct diagnoses at last!), I guess I was hoping the havoc they wreaked on my body would magically disappear. But I’d blissfully forgotten a key lesson I learned years ago—the effects of steroids linger in the body for long after we’ve stopped taking them. It may be a few months since I’ve had oral or injected steroids, but that doesn’t mean my body isn’t feeling them.

“Think of it as your body fighting to regain control over the functions steroids have controlled for so long. When your body wins, you feel okay. When it loses control, things get out whack,” my doctor told me.

I was on steroids continuously for more than twenty years and am off and on them these days, so how much longer will they sideline me? I can’t be sure—no one really can be—but one thing really reassures me: unlike most of things wrong with me, this might actually go away some day. Assuming, of course, that I can avoid having to take steroids in the first place. I’ve been through this cycle many times, but at least I am getting closer to achieving that goal than ever before.

Till then, while Boston flirts with a decidedly un-white Christmas, I’ll keep piling on the layers and hope for the best.

Wednesday, December 06, 2006

Who Moved My Fallopian Tube?

It was supposed to be the no-brainer procedure of the batch of standard infertility evaluation tests, the one diagnostic test that was more formality than functional. Hysterosalpingograms test whether fallopian tubes are open or blocked, and for women trying to get pregnant and not succeeding, the immediate results of this test can make a huge difference.

In my case, no one suspected I had any problems with my tubes, but my medical team decided it was worth it to know for sure and rule it out since a lot of the time, women have blocked tubes and don’t even know it. I had enough problems we already knew about that the last thing we needed was a separate condition going undetected.

I am careful not to turn this site into an infertility blog—my goal is to explore issues surrounding living with chronic illnesses in general, rather than focus on a specific condition or topic. The thing is, though, these two topics seem to overlap more and more these days.

Tubes aside, my reproductive challenges are two-fold: there is the question of can I get pregnant and the inevitable question of should I get pregnant. The “can” part is somewhat dubious—if I don’t have cilia in my reproductive system (and there is no way to test this) then things can’t move along my fallopian tubes to get where they need to be. Other than simply trying and never getting pregnant, a high-risk specialist told me one of the only other indications of whether or not I had cilia would be an ectopic pregnancy.

Equally complicated is the “should” question—some of the numerous concerns there include increased infections and hospitalizations and further decreases in oxygenation, all of which mean a significantly increased risk of seriously pre-term delivery (and that’s just the beginning).

In the middle of these two questions are assisted reproductive techniques like IVF, and here again the can versus should debate is ever-present: were I to elect this path, I could only have single-embryo implantation because the high risks I already face mean multiple births are simply not an option, and the same high-risk factors need to be weighed.

So as we’re processing all of this information and trying to make what seem like impossible decisions, this one test was supposed to be the easy part.

“So you don’t have a left tube, correct?” the doctor asked me during the test.

“Um, as far as I know I do. I’ve never heard that I don’t,” I said.

“Well, the right one looks good but the left one isn’t here,” she said. A pause.

“Don’t get too worried, most of the time this just means the muscle is spasming and the dye can’t get through,” she continued. “At this point, I don’t think more invasive tests are necessary, but we’ll revisit that issue if we need to.”

I nodded, slightly stunned. It wasn’t so much that I didn’t believe her—and intellectually, I knew she was the expert and had seen enough of these to know—as it was that I just hadn’t planned on hearing anything other than “Just like we expected, everything’s fine.”

But after all these years, why is it that I am still surprised when my body doesn’t act the way I expect it to? It never has.

And the more I thought about that, the less inclined to worry about my currently Missing in Action fallopian tube. Things looked grim and wrought with complications, but I’d faced grim and complicated situations many times and somehow, my body always managed to do what none of us expected it to: survive.

The one thing I can say with utmost confidence about my body is that it is unpredictable and anything can happen--which is exactly why I'm not giving up on it just yet.

Monday, November 27, 2006

As Good as It Gets? Thank You Very Much

The Wedneday night before Thanksgiving, I collapsed on the couch just in time to watch “Top Chef” with my husband. I had the day off and spent most of it preparing appetizers for the next day’s feast—in between bouts of coughing, wheezing, and assorted aches and pains. For weeks now I’ve been battling what I refer to as a “high-functioning plague,” a respiratory infection that has lodged itself in my lungs and won’t let go. While it makes breathing difficult and congestion constant, I am usually still able to go about my daily activities and am not confined to bed. I feel sick, but it is a functional sick, so it is okay.

During the commercial breaks, my husband and I chatted a bit about our upcoming few weeks. I mentioned needing to schedule a test I’d had to cancel earlier this fall, and the conversation eventually drifted towards an inevitable topic with us these days: maintaining stability. It’s been 10 months since I’ve had a seriously acute respiratory event and needed to be hospitalized, the longest stretch I’ve had in over a decade. I am so conditioned to expect critical illness that sometimes I can’t even believe it. I’ve had to juggle several other conditions, but they are more life-altering than life-threatening.

Three years ago, I spent the entire week of Thanksgiving in the hospital. I spent Christmas Eve of that year being transported by ambulance from my parents’ hometown hospital to my Boston hospital, one Christmas out of the past five I have spent in the hospital in recent years. Holidays haven’t always been especially festive for me.

But here it was, the night before Thanksgiving. My appetizers were finally ready, my condo was scrubbed clean, one of my favorite shows was on, and I wasn’t anywhere near the hospital. The holidays were indeed making a comeback.

As the night progressed, my symptoms worsened. I turned pale, got clammy and sweaty, and the exhaustion in my arms and legs was overwhelming. This was a nightly occurrence, as was the coughing jag that followed. We barely noticed it, only pausing to turn the volume on the television up more so we could still hear it above all my racket.

“It’s not great, but it’s a lot better than the past few years. I’m not healthy, but I am stable,” I said to John.

“It might just be as good as it gets. And you know what? I’ll take it.”

“Me too,” he said. “It’s more than good enough for me.

And when we sat down to dinner the next day with our family—including my father, who only a few months ago underwent heart surgery, my mother, whose joints would pay for her meal preparations for days to come but whose smile didn’t show that, and my niece, a healthy and happy two-year-old—we knew that while stable never means perfect, we’ll gratefully and thankfully take it for all of us.

Monday, November 20, 2006

Invincibility and Illness

One evening last week, I noticed a girl doing something I would never do on that particular stretch of urban street: walking alone in the dark. Granted, it wasn't extremely late and there were lots of cars and buses on the street. But it was a poorly lit section of road in a pretty tough area—one where a gang of children (children!), ages 10-14, had nearly stabbed a man to death around 9pm just a few weeks ago—and with lots of dark alleys and shadowy hills, it wasn’t exactly a welcoming area once the sun went down.

I could tell she was a college student: she looked about 18, she was wearing a sweatshirt with the insignia of a university just a few blocks away, she had a backpack slung over one shoulder, and like many of the students I see on my campus, she had iPod headphones in her ears and Ugg boots on her feet.

Beyond these telling details, there was something else that told me she was in college: her air of invincibility. She strolled down that dodgy, dangerous street confidently. I admired her for this, but I also worried about her on account of this.

I think it’s an almost universal experience, that sense of invincibility and fearlessness so common during the college years. We’re insistent that we can work hard and play hard; we take challenging courses as we balance campus parties and social events. We stagger home from bars late at night, usually without worrying about if this is safe. We pull all-nighters to cram for finals without considering what this does to our bodies. We eat unbalanced meals at ungodly hours, we think coffee is an equal substitute for rest, and we think because we are young, we can get away with it.

In college, I may just have been foolish enough to walk alone in a city at night. In fact, I know I did this on more than one occasion, buoyed by the false notion that because I was in a “good” area that guaranteed nothing bad could happen. But for me, this air of invincibility was even more pronounced when it came to my health. In addition to the typical age-related tendency towards taking risks, I had to contend with my innate response to the interruptions of chronic illness—the harder it pushed me, the harder I pushed back.

I over-extended myself largely to prove that I could do whatever I wanted despite being sick. I took on too many extra-curricular activities, I spent far too many nights at the newspaper till 6 am, I hated to turn down plans with friends. Each time I went into the hospital, I came out of it with an even more relentless attitude towards taking on too much. Did I ever really think taking such risks with my health would work out favorably for me? Did I ever really believe that none of this would catch up with me in the end?

Of course I didn’t. But that didn’t stop me in those days.

My belief in my own invincibility is much more muted these days. Now I am the one reminding my young students not to roam the city streets alone. Between my vigilant attention to local news and surging violence and my evolving realization that none of us are untouchable when it comes to taking risks, I’d sooner spend my last few dollars on a cab then put myself in a potentially dangerous situation that is both completely predictable and avoidable. I am not ruled by fear, but I think about safety much more than I did when I was in college.

In terms of my health, the gradual progression of my conditions has forced me to abandon the notion that the choices I make don’t have consequences. I spend far more time and energy trying to prevent symptoms from worsening and trying to maintain a balance between what I want and what my body needs than I do in trying to “strike back” at illness or prove that it can’t stop me.

Part of this transformation is simply the maturation process all young adults go through, and part of it can be attributed to the fact that at some point, we get too sick to be able to pretend we’re otherwise any longer. For me, this all happened at the same time.

I watched the young girl disappear into the shadows as my bus pulled away from her somewhat wistfully. Sometimes I miss that invincibility, that ability to take such risks without worrying about the consequences—but such nostalgia is fleeting. I may not take the same kind of risks, but I don't pay the same consequences either.

Sunday, November 12, 2006

Rainy Day Reflections

I’ve been too busy lately to do a lot of things. Writing deadlines to meet, student essays to comment on, fellowship submissions due and a nasty respiratory infection all converging during the same week left me feeling run down and out of touch with the people and the things I care about.

The tighter my chest got, the more achy my leg muscles became, and more I realized how long it had been since I had seen my friends, the more I knew I needed to make some changes:

Step 1: I started a course of very strong antibiotics and resigned myself to using my nebulizer a lot more often than normal.

Step 2: I saw my friends not once but twice on Saturday—and luckily, I had a husband who was willing to chauffeur me around since I was too exhausted to get there on my own. Catching up with some of the girls was wonderful—we keep in touch via e-mails and voice mails, but seeing them in person and having time to really talk was just what we all needed, I think.

Step 3: I read the whole Sunday paper today, something I haven’t had the luxury of doing in months. It reminded me that I was allowed to take some time to relax, that there is a state of being between overdrive and bedridden.

And then something happened that made me even more refreshed and energized. I was at Sunday Mass when they announced they were offering the Anointing of the Sick following the service. I’d been anointed before when I was critically ill, but it occurred to me that I was asking a lot of my body right now and would be asking even more of it in the near future and I could stand to be anointed.

As the priest said the prayers of healing and hope, I couldn’t help noticing the other people who formed the circle around him. There were about 20 of us in total, and together we spanned several decades, several ethnicities, and inevitably, many different kinds of illnesses. Yet I couldn’t tell from looking at any of them what was wrong—and that was exactly what I needed.

Our circle reminded in a very real and immediate way that I am not alone, that every day there are people all around me who must also find ways to balance all the forces in their lives in addition to illnesses. Their challenges might not be visible to the outside eye, but they are still there. After weeks of feeling isolated by my infection and exhaustion and my workload, it was a relief to feel a sense of community.

As I listened to the priest’s words, it hit me that there are many definitions of the word “healing.” I wasn’t looking for my conditions to be healed, nor, I realized, did I need them to be. Healing can also mean returning to a place of hope and faith—in our own bodies, in the ones we love, in the unseen community that supports us when we don’t even realize it, and in whatever form of spirituality or reflection we subscribe to.

Turned out to be the most productive Sunday I’ve had in a long time.

Monday, October 30, 2006

Blonde Ambition

I saw her again this past Friday night, the same woman I’d seen at the gym a few Fridays ago and whose image haunted (taunted?) me for the duration of my workout.

She was standing in front a day locker, clad in an expensive-looking and perfectly-tailored suit. She was tall, taught, and tanned. She wore sleek high-heeled shoes and clutched an improbably small designer bag. Her straight blond hair was glossy and perfect despite the windy, rainy weather, and the brash fluorescent lights bounced off her lacquered nails and sparkly jewelry. She chatted with an equally put-together and equally tall, taut woman about a spinning class. When you looked at her, you just knew she was someone who never missed a workout or skipped a spinning class.

She certainly looked like she a body that worked the way she wanted it to--and she didn't look anything like me.

When I was in high school and college, it was the pony-tailed, lean-legged and perennially tan lacrosse girl who elicited such comparisons and insecurities in me, but now that I am an adult and in the professional world, I found her counterweight.
I am short, I am stocky, and when it rains, my curly blond hair is hard to control. I’d arrived to the gym in my version of “professional” attire—a corduroy skirt, sweater set, and boots with a low heel I’d worn since I had to walk around campus all day and cannot function in heels. It wasn’t sleek or stunning, it was pragmatic and perfunctory. I’d changed into my gym clothes, and yes, I still wear t-shirts from my alma mater (Georgetown), including the cheap ones we used to get in exchange for helping students move into their dorms or the ones they’d give away at campus functions.

I wasn’t there for the spinning class (my muscles felt too weak for that) or to keep up marathon training (the only time I’m involved in marathons is when I am cheering on friends who run them). My goals were much less lofty—to keep the junk in my lungs moving around so it wouldn’t become infected, to boost my energy after a draining week, to lose the vestiges of steroid weight that continually tormented me.

I headed for the treadmill and chose one that didn’t face the room where the spinning class was held.

For obvious reasons, I’d never been much of an athlete (my stint on the JV basketball team was short-lived; my brittle bones broke when I caught the ball at an awkward angle). But I’d always loved going to the gym and feeling like I was doing something for my body that could make a difference. I was proud when I got there and irritated and impatient when I couldn’t. At least that’s how it usually was, except when the same glossy idealized figure I’d been comparing myself to for years re-emerged and made me doubt myself and my presence in that gym.

But later that same night, as I walked to Starbucks to work on my book, I realized it didn’t really matter why both us were at the gym on a rainy Friday night. She might look the part of the well-sculpted, athletic woman much more than I ever will, but I was still there, plugging away on my treadmill and working on strength training. I was doing what I needed to do for my body and my goals, and though they were quite different from hers, they were no less valid or worthy.

Thursday, October 19, 2006

Growing Into Grown-Up Advice

As some of you may have gleaned from bit and pieces of past posts, I consider my father one of the most incredible, inspiring, and memorable people on earth. I write this with no reliance on hyperbole or cliché. He’s overcome more odds than anyone I know and has faced an array of difficulties and challenges so complicated that even the most inventive fiction writer couldn’t have added more incredulous twists.

As a result, he’s pretty damn wise in matters of the heart and of health—or, more accurately, the constant intersection of those two forces.

When I was growing up, I didn’t always want to hear his advice, and if I didn’t tune him out completely, I’d reach into my arsenal of adolescent zingers and sarcastic quips. As an adult, though, I find that I am the one who seeks out his input and feedback. Part of this shift is basic maturity, I think. But with my father, it’s also the fact that so many of our experiences are similar as a result of our medical histories.

Like most people my age (26), I feel like almost every single aspect of my life is fraught with questions. I suppose this never changes and I will find myself asking just as many questions ten years from now, but all I know in this moment is that questions, not answers, rule:

How much time should I spend teaching other people how to write versus working on my own writing?? Am I doing everything I can to manage my health? Can I afford certain lifestyle choices that make being “stable” more likely? Should we move out of our tiny but efficient condo soon, or stay close to my hospital and where we work for as long as possible? Can I conceive and carry a baby, and if medically I can, how do we navigate all the subsequent risks? Are we prepared for the worst-case scenarios? Are we ready emotionally and financially to abandon the time frame for having children we devised when we got married? At the end of the day, is that really even a choice, because is there ever an “ideal” time, especially when you have to weigh so many competing variables? I could go on and on.....

These aren’t rhetorical for me; in fact, I threw most of them at my father in my typical rapid-fire style just the other day and my husband and I were de-briefing him on a recent medical consult. He took it all in, nodding in earnest at points of higher emotion, mulling over other points over in silence.

“You can’t always get the answers you need to pursue the dreams you have. Sometimes you just have to make a decision that might not make complete sense now and grow into it,” he told us. “It’s a risk, yes, but there are very few certainties in this world.”

He reminded us that when he was our age, he had two toddlers and was stricken with cancer and a muscle disease. He wasn’t able to work and was on disability. And yet he chose that time to take out a mortgage on a house for his growing family.

“Was it a huge risk? Yes. Were the conditions anything but ideal? Yes. Did everyone think I was insane? Yes. It was a terrible time to make such a big decision in terms of my health, but I needed to do that then for us to have a future later,” he said.

It was an extreme example, certainly, but it definitely made his point. No matter what the decision or question is—especially where health is concerned—very rarely will we have all the information and facts we’d like. Sometimes we just have to take action or risks in the present into order to grow into them when it matters most.

Sunday, October 15, 2006

And So It Goes…

Usually, I try to craft posts that can stand on their own, essay-type pieces that converge on some central insight or theme about illness and identity that go beyond the minutiae of my own daily life.

That’s usually.

Today I have no larger issue at stake, no idealistic nugget of reflection or speculation.

Right now, I am just frustrated. Frustrated that I woke up yesterday morning and for no apparent reason (or infection), could not breathe and had searing pain in my chest. Frustrated that instead of attending my Saturday fellowship meeting, I was hooked to a neb for hours. Frustrated that I missed my friend’s party and didn’t get to the pile of work or the trip to the gym because I couldn’t sit up without losing my breath.

But deep down, I am more frustrated by the amount of information presented to us at a fetal medicine high-risk consult this past week—or, as it were, all the variables involved in this quest that we have no control over. I am frustrated because I feel so overwhelmed, and every scenario on the table is rife with conditionals and unknowns and extenuations. I am frustrated because right now I can barely find room for joy amidst all the risks and percentiles and negotiations, frustrated that even the encouraging pieces of news seem momentarily drowned out by everything else. Frustrated because I thrive on being in control and crave concrete facts, and I cannot each out and get either of those right now.

I am frustrated because lately when I see babies, tears spring to my eyes without warning and I have no control over that, either. I am frustrated because my body has brought me nothing but complications since the moment I was born and right now I want just one thing, this one thing, to be uncomplicated. I don’t want to have to fight so hard, or give up so much.

And lastly, I am frustrated because I know sound whiny and self-indulgent and everything else I dislike so much and while I should have control over that, too, I don’t.

And that’s it, no threads or parallel narratives to tie together, no concluding statements that wrap it all up neatly and succinctly. Not today, anyway.

Wednesday, October 04, 2006

Little Victories, Big Changes

Last Wednesday, I had the makings of a nasty cold. One week later, I have the lingering remnants of said nasty cold, most notably decreased peak flows and lots more wheezing than normal.

And I couldn’t be happier.

A year ago, getting a cold guaranteed I’d eventually end up in the hospital. A few months ago, getting a cold meant I’d spend a few weeks languishing with bronchitis, and I’d start a long course of antibiotics—and often, I’d still end up in the hospital. But for right now, getting a cold means feeling miserable, forgoing all but the most necessary of commitments to get extra rest, and keeping my trusty nebulizer right by my side. I did it—I had a cold, and it didn’t throw my entire routine out of whack.

Knowing my immune system, this will probably still drag on for a few weeks, but I don’t care. It still didn’t get as bad as I’d been conditioned to expect it would. I am not naïve, I know I still need to hunker down for a long, cold winter laden with viral infections, but at least I am starting out my “bad season” on stronger footing.

Maybe I was just lucky this time, maybe the infection wasn’t a particularly strong one or I felt it coming earlier and responded as such…or maybe the changes I’ve been making in my life and in my schedule are beginning to pay off after all. It’s been a difficult mental battle to scale back my teaching schedule a bit, to say no to new writing projects I’d like to tackle to focus on the ones I already have, to actually build in space for resting when my preferred state of being is overly-committed and super busy.

Half the time I hate it, I feel antsy and irritated, like there are so many things I could be doing, so many things I should be doing. Why teach two classes when I could teach three or four and get more money? Why say no to another freelance job when theoretically I could squeeze it in late at night? Why not make plans for a Sunday meeting since my fellowship meets only on Saturdays, thus leaving an open window beyond the confines of the workweek? This is how my mind works, and this is the inner system of checks and balances I need to control.

But today, in this moment, I am beginning to feel the changes are worth it. I wasn’t as run down as I usually am by this point in the semester, and maybe that’s why things didn’t completely explode when I got sick. Like everything, it’s a trade-off, but right now, slowing down a bit seems a lot more tolerable than having my life completely disrupted by spending days in the hospital and falling even more behind.

Wednesday, September 27, 2006

A Relationship in Numbers

As some of you who have read previous posts may know, I have been thinking a lot about numbers and statistics lately—what they mean, how they define us, and, more importantly, how they fail to capture what cannot be so easily quantified.

In digging through research for my book proposal, I unwittingly came across the following statistic: The divorce rate in marriages where chronic illness is present is over 75 percent.

Now, I am not here to debate the accuracy of these statistics or discuss the methodology behind them, but they did make me stop and think. I was told recently I had a 75 percent chance of not having children on my own, so I approached this statistic with the same question: How do you know if you’ll be in that lucky 25 percent?

Seventy-five percent of marriages where chronic illness is present do not last. That is an overwhelming number to me, and it might be misleading. People divorce for all sorts of reasons, and it doesn't necessarily mean there is a cause and effect relationship between chronic illness and divorce. It could be one of many mitigating factors, but looking at the statistic, it's not possible to weed that out. But certainly between lost income due to sickness, high medical bills, loss of identity, pain, frustration, etc, there are a lot of ways to look at how chronic illness could be implicated in these findings.

Just as with my fertility issue, I don’t think there’s any way to know how to be part of that 25 percent except to try. The odds obviously don’t speak in our favor, but that’s why yet again I am glad that I don’t put too much stock in statistics.

One would think that the stress and tension in marriages would increase with the number of illnesses a person has or the number of people in the marriage who have illnesses—so perhaps a marriage where both spouses have multiple illnesses would really be on the losing side of the odds, right?

But maybe not. Maybe we can look at this from the complete opposite direction. Consider the case of my parents. They married in their early twenties, both believing they were fairly healthy. At 26, my father was misdiagnosed as having muscular dystrophy, a misdiagnosis that lasted seven years and whose toxic steroid treatment left him a diabetic. When he was 32, he had a cancer-ridden kidney removed, the tumor spurred on by the rare neuromuscular disease he’d actually had the entire time (polymyositis). When he was 39, he had a heart attack and an angioplasty. When he was 43, his polymyositis relapsed and he’s been on chemotherapy ever since to try and control it (14 years). Last month, he had a cardiac stent implanted because he had several blockages.

He’s a regular Lazarus in the flesh, no? So how did my mother stand it all these years? Let’s add in the fact the she’s been sick for over two decades herself. She has severe arthritis and degenerative joint disease. She’s had several major reconstructive joint surgeries, has gotten to the point where she’s needed a wheelchair, and is in constant searing nerve pain from her fused spine and crushed discs.

And yet with all the serious illness, the near-death experiences, the years of pain and setbacks and stress and frustration, they have one of the best marriages I have witnessed. They are loyal, supportive and loving towards each other, and understand and anticipate each other’s needs perfectly. I think this is because they have both suffered a lot and therefore can empathize with each other so well. There is no room for anger or resentment because they are too focused on each other’s best interest.

Maybe the more illnesses you have the more you learn to adapt and cope. Maybe when someone you love suffers, you understand your own suffering better and can put it in perspective. Maybe when you’ve been asked to face difficult truths and grim statistics so many times and have always beaten them, you begin to really believe that no matter how bad things are, there is seriously nothing the two of you can’t handle. Maybe you learn that yes, you will suffer losses and frustrations that most people will never begin to imagine, but you also learn that hope will never abandon you altogether, either.

But maybe if we’re playing the numbers game, my parents are just plain lucky they landed in that elusive 25 percent?

Not a chance. They are there because they earned it.

So I have two choices—I can look at the numbers and feel overwhelmed, or I can look at my parents and know what is possible even under extraordinary circumstances.

Sunday, September 17, 2006

Just Say No

For a brief time, I completely forgot that as a patient, I have the right to say “No.”

For years, I’d been conditioned to follow the prescribed regimens and treatment protocols handed to me by a variety of specialists. I was an informed patient—I knew the technical terms for body parts, I knew the correct medications for different conditions, and because I knew my endocrine, respiratory, and autoimmune systems better than anyone, I knew when to question the experts.

Because I had knowledge, I had power. While I spent a lot of time undergoing procedures and shuffling from one office to the next, I knew why I was doing it, and I agreed with the rationale.

This isn’t to say I had become smug, but over the years I had definitely acquired an air of confidence and even authority as a patient. I respected my doctors and their vast body of knowledge, but I realized that in my own way, I had a lot of expertise as well.

And then I entered a new specialist’s office—in this case, a fertility specialist—and any confidence or knowledge I thought I had quickly disintegrated.

I found myself nodding meekly to rapid-fire assessments of my ability to have children, and all sorts of terms and conditions washed over me. I stumbled to wrap my mind around the new words and their implications, and I was always one step behind the physician.

I left the brief consult with a daunting list of blood tests, procedures—some simple, some fairly invasive—and names of other sub-specialists with whom I needed to schedule appointments. I waited in the hall for my blood to be drawn—at least I could cross one task off of my To Do list that same day—feeling completely overwhelmed and completely out of my element.

“This must be what it feels like to be a new patient,” I thought to myself, having never been in this position before.

We were on a mission to rule out every single possible fertility problem first, theoretically making it easier to know what was wrong if I tried to have children and it didn’t work. I’d played this diagnostic game of exclusion before for other problems, but I’d always had symptoms or some sort of evidence to back up these expeditions.

Now, all we had was the knowledge that most people with my respiratory disease, PCD, have trouble having children because like the cilia in the respiratory tract, the cilia in the reproductive system either did not work or did not exist. There is no test or way to find out for sure if this is the case for me, an irony because of all the tests laid out for me, this is the one I really need.

Dutifully, I had my blood drawn. I made appointments with reproductive endocrinology and fetal medicine high-risk specialists, agreeing that it made sense to assess my risks and my medications well before I was planning on having children.

And then it came time to schedule a particularly invasive and painful procedure, one that would rule out a condition no one for one second even thought I had. The procedure itself wasn’t something I’d heard of before or knew anything about, but being a diligent patient, I tried to figure out a time to have it that didn’t conflict with my numerous other appointments, my physical therapy, my teaching, my writing, and my “down” time.

Then I stopped and thought about it, and about all the time I had carved out for exams and consults and procedures and surgeries over the course of my lifetime, all the sacrifices of time and inclination I made to do what was right for my health, what would give me answers I needed.

And I decided this wasn’t one of them. I barely had enough time to do the things I wanted and needed to do; an invasive procedure to confirm I didn’t have what we already knew I most likely didn’t have simply wasn’t a priority right now. Maybe down the road it will make more sense and yield the kind of information we needed, but not now.

“Can I do that? Can I just say, ‘No thanks, not right now. We’ll shelve this one for later?’” I asked my chest physical therapist as the test day loomed nearer.

“Of course. It’s your body and your decision,” he said, surprised that I even had to ask since the old me never passively accepted medical advice at face value.

As if snapping awake from a trance, I realized he was right. Simply because the option was there didn’t mean I had to select it, or that saying “No” meant I was somehow a difficult patient or consumer. Saying “No” meant doing what was best for my body and my spirit based on the facts at my disposal. Even if the procedure and all the terms weren’t things I knew well, I still had a lifetime of experience to help me make my decision.

Thursday, September 14, 2006

Filtering the Noise

Information, as my first-year writing students and I discussed the other day, offers both unlimited potential and unlimited responsibility. What began as a classroom discussion of public health campaigns segued into a conversation about our overly saturated world of cable news, wireless Internet, and twenty-four hour headlines.

How do we know what to classify as important, even essential, and what can be pushed aside for now? It’s a question that faces all of my writing students, certainly, but also one that touches on the core of what it means to be a chronic patient.

As soon as class got out, I headed to a podiatry appointment. My dog had eaten my orthotics, which was probably a blessing because they were several years old and I really needed new ones. Once inside the exam room, the doctor and I spent the requisite amount of time going over my medical history, starting first with the chronic conditions, then the joint problems.

“Well, I had my right ankle reconstructed when I was 14, and I’ve sprained my left meniscus a few times. But both feel great right now, no problems. I have tendonitis in my left hip and my left arm, but I’ve got that under control. I’m your typical flat-feet, hips-turned-in, rolling-ankles patient who needs orthotics,” I told him.

He began the exam, rolling and flexing, pushing and prodding. No problem.

He put pressure on my left heel. I yelped. He put pressure on my right heel. This time, I winced.

“So you have heel pain? When does it bother you?” he asked.

I explained that I didn’t have pain too much, just every morning when I woke up and put my feet on the ground and anytime I walked without wearing my orthotics and sneakers. It had been like that for a couple of years.

“So, what you’re saying is that they hurt every morning and whenever you put weight on them without wearing orthotics?”

I nodded, feeling sheepish. When he put it like that, it sure sounded like a lot of pain. Not intense pain, but pain that occurred regularly.

Turns out, I have plantar fasciitis, a condition where the tissue connecting the heel bone to the toes is inflamed and tight. It’s an injury of overuse and often affects people with flat feet. He recommended different stretching exercises and splints to wear at night. Physical therapy and anti-inflammatory medication were other option if that didn’t help. If it had been bothering me for an extended period of time I probably should have seen someone earlier, he added.

I smiled. Managing the different treatments and therapies and evaluating the various symptoms of my medical conditions could be a full-time job if I wanted it to be. The heel thing was a nagging side nuisance, a faint hum of static that came in on my frequency. Symptoms are yet more pieces of information my brain has to process every day, and sometimes I only have time or inclination to deal with the urgent ones.

That being said, I am glad my dog ate my old orthotics so that I was forced to address my plantar fasciitis. After all, as a journalist I know that sometimes a valid point or important headline gets buried in the text or the Web page and you need a good editor or careful reader to point it out. My heel problem is not major, it’s not glamorous, but it is something worth recognizing.

Monday, September 11, 2006

An Illness of a Different Animal

My family’s dog died today. He was a 14-year-old golden retriever and had, in every sense of the word, far outlived our expectations. I could write forever about all his wonderful traits and everything that made him such an amazing dog (and there are endless examples) but I’ll simply relay that Zach was so popular he got more Christmas cards every year than I did. And I’m not really exaggerating.

Even though we all knew we were living on borrowed time with him—despite relatively few health problems given his advanced years—the news still hit me with head-on force.

It all happened quickly, my mother told me, by way of reassuring me that I couldn’t have been there. He had seizures at 8am; the vet quickly came to their house, and with my parents, my brother, my niece, and my grandmother all around him, Zach then went pretty quickly.

Of course I should have been there, but death is exceedingly slippery when it comes to logistics and planning. He was “my” dog from the day we brought him home when I was 12 until I formally moved out of my house and into my own place. My mother brought clothes from my old room down to the kitchen floor and placed them next to his head so he could smell me, but that seemed so paltry a substitute in his last moments.

“I asked him to hold on for me until I was feeling better,” my mother said through quiet tears. For four years and through three major surgeries, many setbacks, and excruciating pain, he never left her side. “Heaven help us if he goes, what will we do with her?” we all asked one another, knowing that being basically housebound for so long was hard enough for my mother. Having to do that without Zach curled up on her feet, standing guard at her bedside, or giving her comfort when she needed something to hug? Almost inconceivable.

It is no coincidence to my mother, then, that just last Thursday she turned the corner and began to have some semblance of a “normal” life. The searing nerve pain, the crushed discs, the inflamed joints, the overwhelming exhaustion—they all seemed to have finally settled into a tolerable state—not gone, but subsided enough so that she could leave the house an unprecedented three days in a row.

“I’m back,” she declared on Thursday, again in Friday, all the way through Sunday night. She even managed to get some sleep Sunday night—another recent triumph, given her constant pain—and Monday morning, Zach died.

Whatever guilt I had about growing up and moving out on Zach was tempered by the knowledge that he now had another role, an important one—watching over my mother as he had done for me. The first full day we had Zach, he and I bonded: I was home from school sick with bronchitis, and he jumped up on the couch and curled up on my feet. Through countless infections, surgeries, and setbacks, Zach spent years resolutely at my side, nestled on the couch when I was well enough to set up camp there, hovering on the floor next to my bed when I was too sick to be anywhere else.

When I left for college, he spent several nights in my room, waiting for me to come to bed so he could sleep. I came home less and less, I eventually got my medical situation under somewhat better control, and someone else needed him more.

“He’s amazing, he never leaves your mother’s side when she doesn’t feel well, even if it means staying there for hours,” my father would often report to me over the phone. I would nod, picturing him and conjuring up a scene I knew so well.

This morning it was his turn to be sick and luckily he was surrounded by people who adored him. I cried and hugged my own dog, one-year-old Sasha, and was glad that in the end, Zach had what we need most: a companion in the midst of suffering.

Wednesday, September 06, 2006

Boo Radley Emerges from the Shadows

My first year out of college, my friends and I started referring to my extended absences from social life as my Boo Radley phase, in reference to the hermetic recluse in To Kill a Mockingbird. At the time, my lungs were totally unstable and I was in and out of the hospital all the time. Whenever I was home, I was too tired from fighting infections and trying to stay on top of my work projects and grad school assignments to do anything else.

Clearly, it was an isolating time. Despite secondary medical conditions that have sidelined me, my lungs have been much more stable over the past year or so, and it’s been awhile since I cracked a joke about being Boo Radley to friends as I called them to cancel plans.

And yet as Labor Day Weekend fades into the past and autumn is no longer deniable, I find myself feeling a little bit like good ol’ Boo, emerging into the daylight for the first time in a few months and figuratively blinking in the light. It’s the first day of classes at the university where I teach, forcing me to realize just how long it’s been since I’ve had to function in the outside world.

As a writer and a professor, I relish the summer. No student essays to distract me, to trips to campus to meet with students. I can write, write, write (in theory, anyway)—and I never have to leave my home office. Except for intense two-week portion of a year-long fellowship program I am in this July, I haven’t had a set schedule since May. Don’t get me wrong, I did get a lot done. I wrote a ton of freelance articles, I pitched other ideas to editors, and I accomplished the most time-intensive and professionally significant task of the summer, getting an agent for my first book.

But I spent the summer in my gym clothes (which also double as my chest PT clothes). When I didn’t feel well or the humidity got to my lungs, I rested. When my energy levels plummeted—as they often do—I curled up on the couch with my laptop resting on my legs and did my work that way. When I had bad days physically and didn’t feel like dealing with the outside world, I didn't have to. And I never wore heels.

Now I am back in the world of the healthy—at least three days a week, anyway. I am teaching courses about writing for the health professions and how language shapes constructions of health, and the one of the largest roles I play, that of patient, falls all the way to the bottom of the list once the semester begins. Officially, I am an instructor and a writer, and all the signs and symptoms of illness I didn’t have to hide over the summer are back under wraps.

I am really excited and passionate about my content and courses (how could I not be?), and am ready to assume the role of healthy person…almost. I just need a day or so to get used to my September persona..and the heels.

Wednesday, August 30, 2006

Why I’m Not a Numbers Girl

“You have a 75 percent chance of not being able to have children on your own,” the fertility specialist told me matter-of-factly, barely looking up from the computer screen where she was clicking through research studies on the topic.

Instantly, I disliked her. Usually, I appreciate a no-frills approach to medical information. I know enough about terminology and facts to converse with the most technical of physicians by now, and prefer cutting through translations. But this terrain was unfamiliar to me. Suddenly I wasn’t confident, unflappable me; I was reduced to a number, and it wasn’t even a number either of us could quantify one way or another.

I barely heard the “on your own” portion of her assessment, so taken aback by the odds. I’d known women with my condition (primary ciliary dyskinesia, or PCD) have trouble with fertility, but I hadn’t realized exactly what “trouble” translated to mathematically.

The specialist launched into an overview of my options should I fall into that 75 percent—surrogacy, IVF, and medications, as well as their prices—but I wasn’t ready to hear my options yet, never mind process them. I wasn’t willing to abandon the chance I could be in that fortunate 25 percent.

The shock of that particular doctor's appointment reinforced how much I hate numbers. I always have. I slogged grudgingly through geometry and calculus in high school, doing well enough but spending more time on math class than I did on my other eight classes combined. In between journalism internships, working on the school paper, and writing papers for English class in college, I took computer science and marine biology courses just to escape math class. When I entered a graduate program for writing, I figured the verbal part of my brain that had carried me for so long would finally be allowed complete domination.

But if I wanted them to, numbers could define my daily life in all sorts of ways:

1,000 is the number of documented cases of PCD in the United States (though up to 25,000 people are thought to have it but have not been diagnosed). 20+ is the number of surgeries I’ve had, though we stopped counting so I cannot be sure. My medications now number 8 a day, a two-year low, but with winter coming I expect those to increase. I have 7 different medical conditions, a number that fluctuates when temporary problems flare.

I get chest PT 1 time a day, 7 days a week, 52 weeks a year, but my insurance will only cover 3 visits from my physical therapist per week so I need to improvise. 5 is the number of health insurance plans I have switched to in the past 12 months, and 3 is the number of said companies that have denied coverage of the very preventative care that allows me to stay out of the hospital. 4 is the average number of days per week where I have notable difficulty breathing. 26 is the number of years I have been sick.

There are certainly a lot of statistics, but little that jumps out and describes my life, my motivations, or, in the case of my 75 percent odds, my possibilities.

When I look at such a sampling of numbers, I am reminded why I am not and never will be a numbers girl. I cannot add all those parts up and get a whole me.

And on rough days when all the English degrees in the world cannot help me find the words I need, it’s important to remember that I cannot start speaking the language of numbers--they will always fail to capture what is both intangible and essential: hope.

Monday, August 21, 2006

Body Confidence: How Mutinous Bodies Influence Our Instincts

To be fair, I had warned the nurse trying to insert an IV into my arm that I was a “bad stick.” While that is the understatement of the year, I hoped it would let her know that the problem wasn’t her, it was me. Or, as I liked to say, my wily, conniving veins. I needed an ACTH stimulation test to check my adrenal glands. It should have been a simple procedure—draw blood, insert medicine via IV infusion, re-test blood one hour later.

Looks like I may have jinxed all of us that day.

One hour and 45 minutes, 14 sticks, eight blown veins, several hematomas, multiple heating packs, a couple of additional phlebotomists, and much teeth-gritting later, the nurse wouldn’t even come back into the room and I still didn’t have an IV line started. At first, I tried to crack jokes and smile a lot so the nurse—I’ll call her Tammy—wouldn’t think she was hurting me. I have a pretty high pain tolerance (I get my cavities filled without Novocain), but even I will admit that it did hurt.

“No really, it’s okay, you can keep going,” I told her when the needle went into yet another vein and no blood came back out. She’d push and prod until the vein blew or else swelled up to the size of a golfball. After a few tries, she called in the phlebotomist, and an interesting turf battle transpired in terms of tactical approaches. After awhile, Tammy got even more rattled watching over her colleague’s shoulder, and she left the room altogether.

“I don’t understand. I do these all the time, but now I’ve lost my confidence. I don’t want to go near you, and I don’t want to hurt you,” she said as she left. She was practically in tears.

I never got my IV. They had to push the medication in all at once with a syringe and then re-stick me for the second blood draw an hour later. I left with 15 band-aids, several very sore and swollen patches on my arms, and a few instant heat packs to tape around my arms later in the day.

I looked like a disaster, but I honestly think Tammy came out of the experience more troubled by it. “I just don’t have any more confidence in my ability to put in an IV,” she said as she gave me my parting instructions. I was struck by how the balance of power had been disrupted by some tiny, stubborn, and scarred veins. I tried to comfort her with assurances that everyone struggles with my veins, but it didn’t help.

Being the patient trying to console and bolster my healthcare provider was an odd role reversal, but one I’d experienced before. Whenever my body doesn’t act the way it needs to, I feel responsible to remedy the discomfort it causes, like it’s somehow my fault that people lost confidence in their skills when left alone in an exam room with my complicated medical history and my uncooperative body.

But I could relate much more to Tammy than I’d have guessed. I am used to temporarily losing confidence in my own body and in my own skills as a result of my various conditions. It’s the worst when I am returning back to a more “normal” schedule after a prolonged absence or exacerbation. I begin to doubt what I can do, question my stamina level, and hesitate in making plans or commitments because I am not sure I can trust my body the way I once did. Eventually I get there, but while it happens, it is a terrible feeling to question my own instincts, the same instincts that have proved so wise in the past.

I see now why that IV scenario was so precarious for both us. Tammy and I each have our expertise—hers as a nurse, mine as a patient—and yet my body managed to make our knowledge backfire for both us that day. Goes to show that no matter how much you think you know, illness is always an equalizer.

Thursday, August 03, 2006

When Illness and Empathy Clash

By all accounts, it was an innocent remark. I was on the phone with a good friend of mine who was recovering from a particularly nasty cold. Her voice still sounded a bit nasal, and she excused herself once to cough. “Not that I should be complaining about a little cold to you. I feel sort of stupid since this is nothing compared to what you deal with,” she said when she returned to the phone. She sounded sheepish.

I reassured her that that of course she should tell me about it, and I meant it. She sounded absolutely miserable, and a cold is annoying and incapacitating no matter how healthy you are otherwise. We moved on to other things, but her comment lingered in my mind. I don’t ever want to become a martyr for my illnesses, nor do I want them to influence the balance of give and take that exists in any good relationship.

Implicitly, my friend’s comment showed that she understood the realities of my life—serious lung infections, hospitalizations, exhaustion, etc—as best as she could from her perspective as a healthy person. So why did we both feel so awkward in that particular moment? The healthy and the sick have competing rights to compassion and empathy, an idea that makes total sense in theory but can be difficult to put into practice.

Don’t get me wrong, my friend’s exaggerated sensitivity towards my illness was far easier to deal with than the reverse reaction. Like most, I’ve had my share of negative responses to illness. There are volumes of stories out there of people who doubt our illnesses or dismiss them altogether. This is not a point I will belabor, but it is a common phenomenon.

What concerns me isn’t so much when other people don’t respond to me with empathy or compassion but when I am not able to extend those courtesies myself. It’s the dirty little secret of chronic illness, I think. Most of the time, like when my friends are sick or someone I know has an aggravating experience at a doctor’s office, I know what to say and do and how to be what they need from me at that time.

But there are other times when I do not feel as gracious, when I am exhausted from an infection or overwhelmed with getting my life back on track after a long hospitalization and I do not have the resources to respond to others with empathy. It’s almost as if illness removed me from the everyday world of everyday complaints and created a distance between healthy people and myself that I couldn’t just automatically bridge. I was stuck in one place—fear, frustration, etc—and I couldn’t relate to other people. Or wouldn’t relate, to be more accurate.

Deep down, I just wanted to say “Suck it up!” to the woman in the chair next to me at the doctor’s office who complained of pollen allergies, to the acquaintance at work who went on and on about how stressful her life was, or to the person who treated a mild case of strep throat as the end of the world.

For a fleeting second, it is so tempting to respond with something like, “Well, I just got out of the ICU recently because my lung collapsed” or “This is the first day I’ve been able to walk or brush my own hair for a week because my adrenal glands do not work.” I longed for the shock value I imagined those comments would elicit.

But to say such things would make me my own worst nightmare, a martyr for my illnesses. That kind of response would erect a wall between anyone who couldn’t compete with my illnesses and myself. It would also mean I was acting with the very same lack of empathy I find so frustrating in other people.

So in those moments I smiled and nodded in the appropriate places and murmured expressions of concern, but that doesn’t change the fact that my intentions were not genuine. Even though I said the right things, it didn’t mean I always felt them.

Eventually I regain my place in the pace of everyday life and I am not so temporarily boxed in by illnesses that I cannot let anyone else’s needs enter into my thoughts. I regret these instances of resentment because I am not proud of my reactions, but ultimately I take from them the idea no one has a market on suffering. Though our perspectives are often quite different, the healthy and the sick are still entitled to the same empathy and to the understanding of others that we want most in our darkest moments.

Thursday, July 20, 2006

Garlic and Gluten-Free Guts

I just finished reading Ruth Reichl’s memoir, Garlic and Sapphires. The former New York Times restaurant critic’s sumptuous details and rich descriptions lured me in from the start, and I couldn’t help but think she had the best job around—and that no one in her position could ever be celiac.

I immediately decided I would one day add “four-star celiac food critic” to my list of professions. After all, I’d already become a natural at the art of mainstream fine dining, celiac style. I wasn’t about to let my condition scare me away from the champagne taste I somehow managed to keep up on my decidedly less sparkling budget.

When I first got diagnosed, I worried my dining out options would be permanently limited to plain grilled chicken and brown rice. I’d always been a healthy eater in that I avoided fried food, full-fat dairy, and starchy, processed carbs like white bread and sub rolls, but I was still an adventurous eater. The spicier the sauce or more exotic the marinade, the better.

Did this mean saying goodbye to piping hot Indian food, delicate Vietnamese soups, rich French sauces, authentic Italian entrees, and hearty Irish pub food forever?

So I did what any newly-diagnosed, slightly obsessive/compulsive celiac with a photographic memory would do—I immediately memorized the extensive list of “forbidden” foods I found online, learned how to scan ingredient lists in under 30 seconds, and road-tested the quickest route to Trader Joe’s I could find. I experimented with new recipes, and, most importantly, I learned from my mistakes.

Some people around me are still terrified to serve me food—eschewing a lifetime of tradition, my Italian grandmother won’t even cook for me, and my brothers still precede a visit of mine with several phone calls of the “what can you eat? Can you have X?” variety, but I am over it.

I’d always been the type of customer who hated to make a fuss—if my chicken was pink, I’d gingerly eat around the undercooked parts rather than send it back. If I got the wrong side, I’d pretend I genuinely liked brussell sprouts. But now that I knew I was celiac, I couldn’t be meek.

Preparation was the key to successfully dining out. When possible, I checked out menus online beforehand, making a shortlist of items I thought were “safe” so I could inquire about them. Sometimes I even called ahead to make sure accommodations could be made for me. I learned to be upfront from the beginning of the meal and wasn’t afraid to ask a lot of questions. When a waiter replied “I’m pretty sure it doesn’t have any flour,” I wouldn’t order until he’d physically gone to check into it.

I am pleasantly surprised by how many kitchens and servers are familiar with celiac disease. It’s music to my ears when a waitress says, “Oh, you’re celiac? No problem. I’ll show you the four entrees I know are safe, and can talk to the chef if you’re interested in something else.” A few times, a chef has gone as far as personally marking the menu so I’d know all my options. I remember the places like that and talk them up to everyone I know, and like Ruth Reichl’s focus on good service for every customer, famous or not, I also remember the places that couldn’t be bothered to answer my questions.

Wednesday, July 19, 2006

Why I’m No Prada-clad Devil—And Never Will Be

In an attempt to beat the sweltering heat and clear my mind of the (productive and meaningful) clutter that accumulated at the fellowship program I am in, I went to see the Devil Wears Prada last night. For a movie based on witty chick lit (as witty as chick lit can be), the film did not disappoint. I laughed at the appropriately snide comments and hapless “why me” moments.

But mostly I stared at Anne Hathaway. Tall, lean, runway-ready Anne Hathaway (well, after her character Andy finally gets a makeover). She was a goddess.

I watched her race down the street in skinny boots, clatter up and down stairs in stilettos, and traipse around New York and Paris in the highest of Jimmy Choos. Ouch. All I could think of was how sore and achy my joints get from one afternoon of very (very) low heels. Between joint problems (bad ankles and inward hips) and adrenal failure (which makes most of my major muscles weak and sluggish and incredibly painful even to the touch), fashionable shoes are not for me, however much I love them.

I marveled at the hours our dork-cum-party girl Andy kept. She complained about the late hours and early mornings, the events that lasted far longer than she planned and the trips that sprung up at the last moment, but frankly I was jealous. Even if I got offered the job “a million girls would die for” (like Andy did), I’d never be able to accept it. One day, and I’d be done. Whether I am tired from not getting enough oxygen or tired because my adrenal depletion is particularly bad, I am always tired and always pushing my body to get through the day.

The movie came at an especially interesting time for me since this week is the first time I have been in a 9-5 routine in three years. Ok, to be fair, my fellowship runs from 9-3 everyday, so it’s not even the full daily grind. But for someone used to a more erratic schedule—teaching and attending courses later in the day and writing all day beforehand—it is an adjustment.

The last time I was a 9-5’er was the year after college when I worked at a publishing company, and that was in the WA Era—the With Adrenaline Era. It’s only Day 3 of my fellowship program, and already I am seriously dragging. As in John needed to help me get dressed and drop me off just so I could attend and I am in intense pain dragging. I have a feeling tomorrow may be one of those days where I can’t move my legs enough to get out of bed.

Clearly, I am not made for the 9-5 world anymore. Even when my adrenal condition improves, with all of my lung and immune problems, I doubt I ever will be.

Overall, my more flexible schedule is dictated by what I do: teaching at the college level doesn’t require me to be present on campus 9-5, though certainly a lot of the prep work and grading takes place when I am not in the classroom. And the beauty of freelancing is that as long as I have my laptop, I can do my work anywhere. It’s not as if this was all b y accident, though. On some level, I knew I’d never quite have the stamina to run the rat race and stay out of the hospital.

A lot of people envy telecommuting, and for the most part, I love it. I am at my computer by 8:30 every day like everyone else, and I stop only for a lunch break. I don’t have to deal with the hassle of an early commute and when I am having a bad day, I can pace things accordingly.

But the downside is that there is no “off” switch for me, no way to leave work at work because my office is in my home. Compulsive by nature, I feel really guilty if I am at home and not working, whether that’s a Saturday afternoon or a Thursday night. It’s not glamorous, but it works for me.

So I will never be someone who totters around in Minolo Blahniks until 3 am. But I’ll probably always be the girl who clatters away on her keyboard in her pajamas.

Tuesday, July 18, 2006

When the Therapist's Away, the Dog Won't Play

My beloved therapist Steve is away for the week. Considering the guy sees at least three patients a day for chest physiotherapy on top of a full-time job, he deserves way more than a week's vacation. Selfishly, though, I am glad he never leaves Boston for too long.

Anyway, I can (and will) write at length about my unique relationship with Steve--besides my husband, no one sees me more regularly and no one has that much pysical contact with me--but today what's on my mind is the state of affairs when he's gone.

I recently purchased a contraption called The Vest. I always feel like there should be some segue into that, like Dum Dum Dum..THE VEST. It's an interesting (bizarre) contraption consisting of a generator that forces air into two tubes that attach to a vest that I buckle myself into snugly. When I rev up the frequency and speed, the air fills up the vest (I inflate like the Marshmallow Man) and vibrates rapidly, theoretically shaking the lobes of my lungs and loosening mucus that gets trapped there because of my PCD and bronchiectasis.

And it does--but it rattles everything else, too. It makes my arms and legs jiggle with every passing second (no amount of gym-going would protect me from this ugly scene), and when I try to speak, I sound warbled and almost like I am sitting on top of a washing machine moving at jet-engine speed.`

I don't know about any of you out there, but I find The Vest effective. Not nearly as good as the sturdy clapping Steve gives me, but it makes me cough often enough to feel like it's working at least somewhat. And failing everything else, it's a great party trick. I can't tell you how many friends of mine think it's really cool...until I strap them in and they realize it's actually not that cool to feel like the breath is getting squeezed out of you. They say it hurts, but by this point, I just find it uncomfortable.

The real issue with The Vest is that is it loud. LOUD. And my dog Sasha is a complete basketcase when it comes to sound. Seriously. She knocked over pans in the kitchen and went on a two-week hunger strike just to avoid being anywhere near the pans again. It was so bad we took her to the vet, who diagnosed her with doggie PTSD (post-traumatic stress disorder) and told us to put flower essence into her water to calm her down.

So, put a loud and potentially scary machine in the same tiny living room of my condo, and it's a bad day in Sasha's world. When it's turned off, she slinks by it, giving it dirty looks. When it's on, she dashes out of the room and cowers into the bedroom. After that, it takes her a few hours to even come near me again, and even then she somehow manages to give me a withering look.

Steve, come back home! As much as I miss you, Sasha misses you even more!

Sunday, July 16, 2006

What Bridal Boot Camp Didn’t Teach Me: How to be a Chronic Wife

When I got engaged, my mother gave me her yellowed copy of the Better Homes and Garden’s bride-to-be handbook. It was a nostalgic gesture since her mother had bought it for her, and much of the advice was charmingly anachronistic: gelatin molds were not in our meal plans, and I didn’t see myself having time before we both headed out the door each morning to arrange a multi-course breakfast, complete with freshly-cut flowers.

So the hardcover handbook made its way to bookcase, and a slew of bridal magazines soon took over the coffee table. I had no end of advice on how to choose dresses, where to go for a honeymoon, and what I should look for in florists. At my church’s marriage prep course, we spent a few evenings with strangers discussing our finances, spirituality, and sexuality. Slightly awkward, yes, but helpful.

Armed with all this engagement ammunition, I thought I’d covered all the bases. But what I didn’t stop to think about was exactly how I would approach being a Chronic Wife, and all the adjustments that entailed—and of all the roles and responsibilities my new life would demand, this was one of the most significant.

I’d gotten the role of Chronic girlfriend down well. There had been the initial hesitations—will he get scared off by all this?—and the pivotal breakthrough moments—realizing I liked having him there when I recovered from lung surgery and didn’t need to hide my realities from him. I loved that I had found someone who accepted me, medical calamities and all.

From the beginning, illness was a part of our relationship. Sounds obvious, yes, but it wasn’t always that easy to be forthcoming. Before we’d said “I love you” we’d battled through some scary infections and complicated procedures, so I knew we had what it took to face things together in the long term.

The hard part for me was that I was used to being the one in charge of my health, whether that meant deciding when to call the doctor or go to the hospital, deciding how many work-related projects to take on, or dealing with a new diagnosis. I turned to my family when I needed support or advice, because both my parents had been sick my entire life and understood my situation so well and my brothers were more than used to thinking in terms of chronic illness.

But now I needed to work John into this equation, terminally endearing and shockingly healthy John. On one level, I needed to break away from my habit of dealing with issues or making decisions on my own or with my parents. As my husband, he needed to be the one I turned to for this, just as I turned to him with everything else. He was willing and able, and I had to trust him with that one last piece of vulnerability.

But this was about more than whom I should consult when faced with a medical decision. On a deeper level, it meant realizing that each decision I made affected him, too. It wasn’t just about me anymore, or how much I wanted what I did to define me, not what I had.

If I took on too much work and my adrenal depletion worsened, he was the one who had to pick up the extra slack, whether that meant folding all the clothes I’d meant to finish, ferrying me around to do errands when I was too weak to drive, or skipping events we’d planned on because I couldn’t get out of bed. If I didn’t slow down when I had a respiratory infection and it lingered, it was John who spent nights sitting in a chair next to my hospital bed, sick with worry and exhausted.

Of course, I can’t always control when I have bad days—they are simply part of chronic illness—or when I get infections that won’t respond to medications and I need to be hospitalized. My husband understands that, just as he understands my need to keep pushing. But he’s helped me find a balance between the two.

What I can control are things like staying on top of my daily chest physiotherapy, making realistic decisions when committing to events or making plans when I am not feeling well, and pacing myself when it comes to figuring out how many writing classes I should teach each semester or how many freelance gigs I can juggle at once. The “old” me jumped at every opportunity without thinking, so eager to prove to myself that being sick didn’t mean I couldn’t do everything I wanted to do, and the old me often lived with the serious consequences of that.

I wasn’t going to drag John into that same old cycle.

The married me still has that impulse to jump each and every time I see a great writing gig, another section of a class opens up that I can teach, or I think of some new independent project I just have to start. I’d be lying if I said I didn’t. The difference is now I actually stop to consider the ramifications on my health and my marriage.

It’s good to turn to him when I make a decision, but even better to consider what my decisions mean for him before I make them at all.

Friday, July 14, 2006

It’s All Relative: Gaining Perspective in Maintenance Mode

After twenty-odd years of respiratory emergencies, bizarre infections, and multiple body systems going haywire at the same time, I am used to crisis mode. I studied for finals and wrote newspaper articles from the ICU in college, backpacked through Europe with a broken ankle and torn ligaments, and taught undergraduate writing classes so fresh from the hospital that I still had an IV in one arm and a hospital bracelet on the other.

My attitude matched my actions. During ambulance transport, I cracked jokes through an oxygen mask. I referred to spells where I was too run down to even leave the house as my “Boo Radley” days, and when innocent phlebotomists entered my hospital room to draw blood, I serenely offered them my ankles since they’d be hard-pressed to find a vein anywhere else.

And then something happened.

I got better diagnoses, more targeted treatment plans, and doctors who managed to unravel the thorny mess known as my medical history. I entered a hitherto foreign place known as maintenance mode. I wasn’t healthy in maintenance mode, but I was stable. Instead of the cycle of crisis-recovery, crisis-recovery that had shaped most of my life, I had series of so-so days punctuated by the occasional really good or really bad day. The difference was that the really bad days were not nearly and difficult as they had been, and the really good days were markedly better.

Sounds great, right? And it was. But it was also hard. I simply didn’t know how to exist without a constant barrage of setbacks and calamities, and I’d never had the downtime to evaluate how my baseline health status had changed over the years. While it was wonderful to not be in and out of the hospital as often, it was almost as tough to see for the first time what “everyday” health meant for me. Most days, I did have a hard time breathing, and that was never going to change.My energy level was still pretty low, but I began to see that the more carefully I planned my activities, the more successful they were. I stopped looking at life in terms of "getting back to normal" and realized that this new reality was my normal. There was no drama to eclipse the hard facts anymore.

It took awhile for me to relax enough to start making weekend plans with my friends again and be confident I'd feel well enough to attend. Slowly, I went through "re-entry" into the world of the healthy, and found my position within that world. While the wheezing and congestion had worsened over the years, they now fit in around teaching, writing, and getting to the gym. My daily chest PT visits were no longer my only contact with the outside world but were routine activities I scheduled into my busy days.

Maintenance mode, then, was largely about accepting realities that were so easy to ignore in the flurry of ER visits, CT scans, and IV lines. It was also the first time I’d really seen how skewed my understanding of “crisis” was. If I wasn’t turning blue from lack of oxygen or having some sort of cardiac episode, then that meant there was nothing really wrong, which I now see is a dangerous lack of a middle ground.

Luckily, I have an exceptionally healthy husband who helps in the ongoing process of defining things for me. Things like bronchitis, pneumonia, or kidney problems don’t faze me, but they certainly faze him. Somewhere in between my laissez-faire attitude towards anything short of near-death and his usual interaction with sickness—a seasonal cold or allergies—is the common ground I need to survive as well in maintenance mode as I do in crisis mode. The choices I make for my health no longer completely usurp the choices I want to make for my spirit and because of that, I no longer resent them.

Thursday, June 08, 2006

What I Learned from my Defective Family Tree, Lesson 1: Stubborn or Stalwart?

One of the hardest things about being chronically ill is learning to ask for help. Our conditions are not going away—or else they wouldn’t be chronic, would they?—and as much as it’s frustrating, even sometimes embarrassing, to have to ask for and rely on the help of others, it’s a must if our goal is to maintain optimal health.

Don’t think I was always this sane and logical. In fact, I rarely am and it is a constant battle to re-draw that fine line between being independent and self-sufficient and being…well, stubborn and foolish. After all, when I overdo it, I am the one who suffers most. Why not admit when I need a hand doing the grocery shopping or cleaning the house, or voice when it would make a huge difference if we went out somewhere close to my house so I didn’t have to drive a long distance? If I don’t speak up, I will suffer for it, whether that means my muscles get weak and sore from adrenal depletion or the extreme fatigue of low oxygenation washes over me.

Since my health status changes practically by the hour, sometimes the best-laid plans fall to the wayside and things I thought I could accomplish alone are no longer possible. Because the only predictable thing about chronic illness is its unpredictability, I need to be able to adapt just as readily as my body dictates.

Luckily for me, I am not only a medical freak, I come from an equally bizarre family. My mother has rheumatoid arthritis and degenerative bone disease, and my father is a cancer patient, heart patient, diabetic, and one of the few people I’ve ever heard of who suffers from polymyositis, a rare neuromuscular disease.

Yes, the fruit doesn’t fall from the genetically defective tree, does it?

However, there’s an upside to my dubious lineage. Except for my older brothers, who are pretty healthy, we’re all patients. But the flip side of that means we’re all caregivers too, depending on who needs it most. When I am in respiratory failure, my mother eschews her searing back and shoulder pain and sits by my side in the ICU. When I am having a good day and she is not, I drive her around to do her errands and help fold her laundry. When my father overdoes it and his fatigued muscles cannot move anymore, I scold him into resting and order him to cancel his plans and take a nap.

Oh, the irony. The very things I find so hard to do are so easy to tell other patients to do! I could either remain the world’s biggest hypocrite—I once conducted a conference call from a bed in the ICU, face mask and all—or I could take some of my own advice, advice I can’t go a few days without hearing from my mother or father.

In a family of patients where everyone needs help now and then and every condition is relative, you can’t get away with too much. Someone will call me on my lunacy and my tendency to work solely in overdrive just as quickly as I would for them.

Turns out, the best way to ask for care is to know how to give it, too.

Sunday, April 23, 2006

Preventative Medicine in a Chronic World: The Illogical Logic of Health Care

You only need look on the cover of any number of mainstream magazines or flip through the newspaper to see how much discussion there is about chronic illness in our country. Football stars appear in television ads for asthma prevention, and well-packaged ads plugging medications for long-term conditions grace our screens so often nowadays that I can recognize their corresponding theme music from the other room.

With this increased awareness of chronic illness is an understanding of the economic impact of such long-term medical problems. Lots of people are living longer and living with conditions that require a lot of care. According to the Healthy People 2000 Final Review, put out by the Department of Health and Human Services, the direct medical and annual costs attributed to these conditions total more than $3 billion, or four percent of the nation’s gross national product.

That’s a whole lot of money at stake, and as much as I hate to admit, the business of health care is, above all else, a business. Does that strike anyone else as a monumental—and inevitable—conflict of interest?

The logical thing would be to provide as much preventative care as possible, right? The more we can control our symptoms and the progression of our diseases, the less likely we are to need longer hospital stays, costly surgeries, and additional medication. It’s a win-win situation—we are healthier and happier patients and insurance companies save money when they don’t have to cover skyrocketing hospital bills and expensive procedures. Overcrowded and overworked hospitals would even benefit if chronically ill people like myself weren’t always clogging their wards.

But it doesn’t work like that. Let’s take the example of my daily chest physiotherapy (chest PT) since I’m currently embroiled in a messy battle to get it covered. Chest PT involves a vigorous “clapping” the lobes of the lungs in eleven different positions by a trained professional to dislodge the mucus that collects in the lungs. Since my lung diseases mean mucus and infection build up in my lungs each day, chest PT is an essential component of my treatment plan—without it, my infections linger longer and get much worse, often leading to respiratory distress or even respiratory failure.

Before I got correct diagnoses for my lungs and I didn’t have chest PT, I spent weeks and weeks in the hospital each year, including stints in the ICU for collapsed lungs and pneumonia. Let me tell you, several days in the ICU and multiple x-rays, procedures, tests and monitors doesn’t run cheap. Multiply that by several trips, and it runs into thousands and thousands of dollars.

You’d think then, that my insurance company would rather pay for the much-cheaper daily chest PT and help keep me healthy than wind up paying truly shocking amounts of money when I am constantly in and out of the hospital. Surely such a sound preventative measure makes sense both financially and in terms of common sense.

But no. I’ve changed health plans five times in seven months due to employment changes, and each time I switched, the worse it got. One company refused to cover any chest PT after two weeks’ worth of sessions, and another wouldn’t even do that. It offered to send a therapist out once to train a family member, leaving arguably the most critical part of my treatment plan in the hands of well-meaning people who didn’t know how to use a stethoscope or locate any of the lung’s lobes.

After months of phone calls, faxes, and letters of medical necessity from my doctor, I finally won a battle, but winning the war is looking increasingly futile. I have coverage for three sessions a week for four months, but since they decided to apply it retroactively, I really only have coverage for another month. After that, no one knows what will happen, and even with this small victory, my husband and I have already shelled out $2100 towards chest PT in the past several months.

I wheeze more, I’ve had more viral infections and decreased oxygen saturation, and I’m running out of money—and I am still one of the lucky ones who even has health care. The chronically ill population is only going to grow—hopefully, there will come a time when attitudes towards our care with evolve with us.

Thursday, April 13, 2006

Confessions of a Former Asthma Patient

I found out the other day that I probably don’t have asthma. After the lab results came back, apparently there was "no clincal evidence" of an asthmatic reaction in my blood, though the final verdict is still out. Great news, right? The wheezing, the coughing, the inhalers and nebulizers, the trips to the emergency room, the steroids, all the things that make asthma difficult—does this mean I get to kiss them all goodbye?

Not quite. On the one hand, yes, it is great to know that after 25 long years, I might not have to keep the term “asthma” on my lengthy list of medical conditions. Hopefully I can phase out the strong steroids I’ve had to take to control my breathing. A lifetime of steroid use has wreaked havoc on my body: brittle bones, thyroid and metabolic problems, an enlarged liver and spleen, and most recently, adrenal depletion.

But the thing that totally stinks about not having asthma is now knowing that I may never had asthma. Let me explain. I didn’t get the correct diagnoses of primary ciliary dyskinesia (PCD)—a rare genetic disorder that means I do not have the working cilia that are supposed to keep the lungs clear of mucus and debris—and bronchiectasis—the stiffening of the airways that leads to further mucus and infection—until I was 23.

Before that, I spent a lifetime battling symptoms that everyone told me could be explained away by my asthma: frequent infections, thick mucus I coughed up every day, collapsed lungs, constant hospitalizations, respiratory distress/failure, numerous ear and nose surgeries. Yet every time I showed up in the hospital, I was told there was no reason for my “exacerbations of unknown origin” if I was taking my medication. They gave me steroids and the sicker I got, the more steroids they gave me. By the time I was in college, I was spending weeks out of each year in the hospital, sometimes in the ICU, while steroids continued to damage my body.

The older I got, the more insistent I became that my asthma diagnosis didn’t reflect my symptoms or my daily life. My body was telling me one thing, and the specialists were telling me another thing altogether. After endless tests and biopsies, when I finally got the diagnosis of PCD and bronchiectasis, it was the first time my experience of illness actually matched my diagnosis of illness. At the time, we thought that the asthma was a small contributor to the real culprits, so I stayed on my inhalers and medications.

And then after a winter of lingering infections and different courses of antibiotics, my new doctor spun around in his chair and asked me a few weeks ago if I thought I even had asthma. “That’s the million dollar question, isn’t it?” I asked, shocked by the absurd irony. And when the test results came back showing no sign of an asthmatic reaction to an infection, it was bittersweet news.

It’s great that I can now focus on the medications that will target my infections, not my asthma. But it’s frustrating to know that because I was shoved into a diagnostic box that clearly didn’t fit my symptoms, I spent a lifetime on toxic drugs that I might not have needed in such large doses if I’d known what was really wrong.

Turns out my body was right all along, and while I’m glad I followed my instincts, I am even more glad I found a physician who knew the right questions to ask.
I am an experienced freelance writer available for ongoing consumer health, corporate, and editorial work. In addition, I do copy-editing, developmental editing, and I also consult on book proposals, social media projects, and application essays and personal statements. I also offer academic writing support.

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For a comprehensive summary of academic writing support and application essay consultation, please e-mail me at laurieDOT

Lastly, I speak at conferences and lectures about issues related to chronic illness, publishing, and social media. Please contact me if you are interested in having me at your event.
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