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

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

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

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

That’s still my hope.

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

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

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

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

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

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

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

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

I am sitting in a Starbucks right now, ostensibly preparing for my next class, but in reality I am distracted by the wonderful, luring aroma of espresso. Its scent lingers on my clothes and I can almost taste it. It is my Siren calling for me, tempting me with promises of pleasure and joy.

I am drinking tea. And I’m clearly not that psyched about it.

Before I totally martyr myself, I should probably mention that I gave up espresso-based drinks for Lent and cut down on relgular coffee, but I didn’t give up caffeine altogether (that would be a kamikaze mission for me; I tried it once a few years ago and within two days, my boss politely wondered if I might think of something else to give up since my productivity had taken a noticeable nosedive and my headaches were blinding). But since I do waste a sizable amount of money on sugar-free, nonfat latte concoctions at least six days a week and haven’t attempted to teach a late class without an espresso infusion in three years, it is something.

I’ve already acknowledged the absolutely disgusting amount of caffeine I drink in previous posts—a pot of coffee on my own in the morning, and the life-saving latte in the afternoon, at least. At this point, I’m beginning to see it as more than just a conversation piece (you think that’s gross? Listen to how much coffee I drink!) and as some sort of personal failing—how in hell did I get to this point? And to top it all off, it doesn’t even help. I’m still brain-foggy and slow-tongued by late afternoon.

Combined with my other Lenten resolutions, I hope the caffeine-cutback makes me less disgusted with myself. I’ve also cut out eating in between meals (my equally night-owl husband and I have been known revert to college behavior and run out to 7-Eleven to buy frozen yogurt at midnight or throw a bag of popcorn in the microwave in time to watch the Daily Show, not really the best way to eat).

Over the past few years, though, I’ve started to see the merit in not just giving things up for Lent but in making changes/improvements and adding positive behaviors to my life. My theme for this Lent is balance, not just in terms of maintaining health conditions (that’s a given) but in terms of setting aside time to reflect and also in terms of clearing my mind of negative or hurtful things: not getting so buried in student papers and revisions on Sundays that I don’t make it to church; not backing out of weekend plans with friends or my husband because I’d rather use those five four hours for work; not getting bogged down by passive-aggressive anger when calm confrontation would cause much less pain, etc.

So that’s where I stand. As my good friend said yesterday, you can do things for Lent for faith-based reasons or because you like the personal challenge (I subscribe to both), but either way, it is a chance to let go of some of the obsessions, indulgences, and pettiness that we’re better off without.

So here’s to less caffeine, less workaholic tendencies, more introspection and reflection, and more mature ways of handling problems. (But I’m not going to lie, I’m already salivating for my Easter Sunday sugar-free, nonfat cinnamon dulce latte!)

The instruments were sub-par, the lighting wasn’t ideal, and the surgeon was plying his technical trade for the first time, but against all odds, the surgery was a rousing success.

In the grueling pre-operative moments, I went through many emotional states. There was disbelief: I can’t believe this is happening (again). There was sorrow: I can’t imagine what I will do if I have to suffer this loss. There was anger and denial: But I’ve done everything I can, I’ve taken all the precautions and safety measures, I’ve performed all the maintenance and follow-up. This can’t be happening to me.

In the end, though, an eyeglass repair kit hastily purchased at 7-Eleven and the two sturdy hands of my intrepid husband proved enough to perform a delicate operation on my sickly little Powerbook G4.

The bizarre DOS language that took over the screen, the incessant kernel panic message that froze and crashed the computer every 10 seconds, the horrible shrieking sound it omitted whenever I tried to run a disk repair, the terrifying hieroglyphics that appeared where a lovely Microsoft Word document had flourished only moments earlier—in the end, all these malignant forces were no match for the two of us, battle-weary and used to the wily ways of the shifting internal network card whose movement wreaked havoc for my hard drive.

We’d experienced cataclysmic moments with it before, we’d tasted fear and considered the worse-case scenario, so we thought we were veterans by now. Nothing could have prepared us for the full onslaught of last night’s carnage and disease, the symptoms of which first appeared at the corner coffee shop around 8pm and whose groans and machinations did not end until this morning. For the first time, I really thought all hope of salvaging my beloved little titanium wonder was gone.

But with a flick of his wrist, the turn of impossibly tiny screws, and the re-alignment of one pesky, wriggling network card, John brought my computer back to life. Since my G4 is almost an appendage at this point—I use it easily 14 hours a day during the week and only a little less on weekends, and practically twitch if it isn’t in my vicinity at all times—the prospect of losing it was inconceivable.

Luckily, my computer is again whirring and clicking away as it should, the picture of health…and life for me can go back to normal. You gotta love it when acute triage solves the problem.

Jury duty. Two words synonymous with logistical issues, scheduling conflicts, and all around grumbling, right? (Except for that one person in the jury pool who really, really wants to be impaneled…there’s always one).

I didn’t really want to be put on a jury. It was the first week of classes and not the best time to abandon my students, but I was the second person seated in the jury box. All I knew about criminal trials came from Law and Order (and sadly, this prosecutor was no match for the intrepid Sam Waterson), so at the beginning, none of this seemed real to me.

And then the trial began, the courtroom filled up with friends and family members of the young defendant who were staring at me, and I realized how very real this was to all of them. More than that, I realized that I was entrusted with the deciding this 20-year-old’s future (or, at the very least, the next several years), and it was a power I wasn’t sure I wanted. My only credentials were that I was a citizen, I believed in innocence until proven guilty, and unlike other jury pool members, my time conflicts were not so substantial that I was dismissed for them.

What really struck me was how vulnerable the defendant was. He had to trust the six of us to be fair, impartial, and reasonable, and he gave up all pretenses of privacy the moment he entered the courtroom. As I held his Miranda rights agreement form in my hand and looked at his signature (did he ever think when he signed that form that a total stranger would be scrutinizing it as evidence?) it hit me how personal a signature really was, how all the time we sign forms and waivers and disclosures without really thinking about it.

So what does this have to do with health care? A lot. Namely, that innate vulnerability that comes with signing away our bodies to various forms and consents and entrusting our fates in the hands of other people as a result.

When I was appointed jury foreperson, the weight of our collective responsibility seemed even heavier. We were tired, we were hungry, and we’d already logged some long days in the courtroom, but I emphasized that we couldn’t rush deliberations, that at the end of the day we needed to be able to look at this kid and his family and know we did our best to be thorough and fair.

In the back of my mind was a scene from this past summer, when the cardiac surgeon in charge of my father’s complicated procedures ducked into a conference room and quickly sketched all the blockages he’d found in my father’s heart and ran through the options he had for fixing them. He only had a few minutes to discuss things with us; there was a long line of patients he needed to get into the cardiac cath lab after my father.

He was experienced, smart, and a top-notch surgeon, but that didn’t comfort me in the moment. I wanted him to slow down, to really weigh the different options and potential outcomes and complications with us, to treat my father not as a case to get through so he could move onto other things but as an individual worth all the time and consideration his future required.

Wasn’t that the same fundamental role of the juror?

I’d spent enough time in waiting rooms to know that when the fate of the people you love most in the world rests in someone else’s hands, all you can do is hope and pray they proceed with caution and wisdom. I’d spent enough time resting my own fate and my own body in the hands of doctors and surgeons to know what it feels like to be vulnerable, to wait for a verdict or outcome that may not be what you were hoping to hear.

So maybe I brought something else besides basic citizenship to the deliberation room—after all, vulnerability is an equal-opportunity emotion.

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.
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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.

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.

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.

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.

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.