Wednesday, August 29, 2007

So Speak Up Already

An interesting article in Monday’s Boston Globe called “Patient, Protect Thyself” covered ways hospital staff and patients alike can combat a serious and often preventable problem: infectious disease in hospitals. From making sure everyone who enters a patient room washes his or her hands to maintaining vigilance over the amount of time tubes are left in the body, there are all sorts of ways to reduce the threat of infections.

Questions of communicable agents and preventative practices aside, the article touched on a larger theme that resonates with me, the idea that patients not only have the right to question their health care providers but that such queries are an essential part of optimal care.

Perhaps the meaning of “Patient, Protect Thyself” is really “Patient, Assert Thyself.”

This semantic difference isn’t what really concerns me, though. I’m much more interested in why it can be so hard to do that, especially considering it is our health at stake. Maybe some of you aren’t ever plagued with momentary meekness, but I’ve definitely had encounters where I’ve had to double check or question something and before the words are out of my mouth my face is flushing a bit.

I don’t want to be annoying. Or condescending. They are the ones with medical training, not me.

(And do I really want to annoy someone who’s coming at me with a needle?)

I trip over my own words with “I don’t mean to be a pain” and “I just have a quick question” and “I’m not sure, but I think…” when of course, I am pretty sure. I’ve been through the revolving door of hospitals and doctors’ offices my entire life. I’ve learned some things along the way, like where the best veins for IV lines are, how many nebulizer treatments I need to have before they actually start to help, or that one medicine in particular is the only one that stops my nausea after anesthesia.

There are the obvious times when it’s easy to be assertive, like the time I was sent for the wrong test on the wrong body part with the wrong patient ID number (hello, HIPAA!), or the time my doctor ordered chest PT three times a day while I was an inpatient and I hadn’t gotten any. But the less egregious encounters are the awkward ones...which is weird, right? I mean, I don’t have a problem sending back the wrong coffee order, or double-checking that the security tags have been removed from newly purchased clothes, or repeating the take-order over the phone when I sense the person on the other end may have missed something.

Surely looking out for my body is more important than latte orders, security tags, or garden salad versus spinach salad?

And that’s exactly the problem—it is so much more important. One could argue that part of the problem is the leftover vestige of the patient-practitioner hierarchy where the patient’s job is to sit still and defer all authority, but I don’t think that explains it. I think deep down it’s a question of vulnerability, too. Despite how much we know and the wisdom we’ve accumulated, in these situations we still need to rely on someone else to do what we need done to feel better. Once you’ve crossed over that very real physical boundary and let someone in, it’s not always easy to admit a lack of confidence in what they’re doing.

* * *

On another note, Grand Rounds is up at Rickety Contrivances of Doing Good, where my post on the role narrative plays in the doctor-patient relationship is featured as the first post. Susan did a great job with a really compelling theme, so be sure to check out the posts.

Tuesday, August 21, 2007

Apparently, There's Some Thinking Going On...

Many thanks to Jenni Prokopy at ChronicBabe for giving A Chronic Dose its second Thinking Blogger Award, and congratulations on her own much-deserved recognition.

UPDATE: Before you delve into the blogs listed below, I wanted to update you with news regarding my friend Jenni at ChronicBabe, whose home was destroyed last week during the heavy storms that struck Chicago. To read more and see how you can help, visit ChronicBabe.

Now it’s my turn to select five blogs that make me think, make me question, and otherwise enlighten or inspire me. There’s a lot of great writing out there, so this isn’t an easy task. With no further ado…

Susan Palwick at Rickety Contrivances of Doing Good is an acclaimed sci-fi writer, an English professor, and a volunteer ER chaplain— a dynamic mix indeed. She’s a thoughtful, engaging writer with a perspective well worth reading.

Tiffany at Sick Girl Speaks has quite the long medical history under her belt, but her mission is much simpler: to be a patient advocate to the healthy world. No one’s seen more of the medical institution than Tiffany, and her insights are both spot-on and unflinchingly frank.

After the MFA starts by posing the question that makes all MFAs cringe a bit: So, now, all of a sudden you’re a writer? For anyone thinking about getting an MFA, working towards one, or anyone has one and has no clue what to do with it, check out this site. It’s informative, witty, and doesn’t sugarcoat.

Tracey at More Than a Minivan Mom has lots to say on all sorts of topics, and her opinions are as interesting as they are honest. Plus, she’s about to embark on a career that’s especially close to my heart: working with pediatric patients (specifically, kids with cancer).

Michelle Richmond at Sans Serif is a best-selling author and her thoughts on writing, reading, and “bookly ephemera” are compelling.

Here are the rules for winners. If you choose to participate, please make sure to pass the rules on to the next Thinking Blogs you tag!:
1. If, and only if, you get tagged, write a post with links to five blogs that make you think.

2. Link to this post so people can easily find the exact origin of the meme.

3. Optional: Proudly display the "Thinking Blogger Award" with a link to the post that you wrote.

* This award was started by Ilker Yoldas at The Thinking Blog

Friday, August 17, 2007

An Open Letter to Non-Coughers

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

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

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

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

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

But can I really blame them?

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

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

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

Thursday, August 16, 2007

Don't go without your Chronic Dose!

I know you're out there, loyal readers. I have a simple request of you: the time has come for me to do a better job managing my site traffic, so I'm changing things up a bit. Bear with me. I've added a handy-dandy e-mail subscription service--located at the top of the sidebar info on the right--and I'm hoping you'll take a couple of seconds and subsribe to my posts that way. Thanks so much!

Wednesday, August 15, 2007

I’ve Been Told I Need a Bubble….Can I Make that Two?

After all these years, dear readers, I can safely say I’ve encountered a “first.”

I tore a ligament in my ankle. Sitting still.

Yes, sitting still. Now, I’ve torn, broken, twisted, and battered my knees and ankles many times; I’ve even had the other ankle surgically reconstructed using a tendon from my leg that was strategically drilled into the bone and held in place with pins. But normally, there are reasonable explanations for my injuries: a wrong turn in kickboxing class, a stumble off a sidewalk onto cobble stoned streets while wearing heels, too much wear and tear from figure skating as a child, etc.

Now imagine my sheepishness when I hopped/limped into the ER at 1 am last week and had to answer the inevitable, “So how did this happen?” What else could I do but admit the truth: I am that much of a disaster that even sitting still I somehow manage to injure myself. I mean, I thought I’d reached an all-time low when I broke my finger typing last month (the second time I’ve done it that way), but at least I know I can still surprise myself.

For years, friends and family have half-joked that I need to encase myself in a protective bubble. In fact, even my doctors have said it. Whether it’s a strep infection in my knee, a rare type of bug no one else grows, the time I broke into hives only to be told I’d somehow become allergic to myself (I’m not kidding on that one), or any of the other myriad medical mishaps I’ve encountered, each time the tale borders on the improbable, the response is the same: “You need a bubble.”

Actually, I think I need two.

Allow me to contextualize this most recent escapade. I was sitting on the floor of my parents’ bedroom, legs on the plush rug and back leaning against the bedpost. My dog had her head resting on my left ankle, which was turned outward. After a few minutes, my ankle felt sore but I was reluctant to move it. I remained that way for about an hour and when I finally stood up, I fell over and my eyes smarted with the pain shooting up the side of my ankle, into my heel, and up my leg.

But silly girl, why didn’t you just move your damn foot when it started to hurt?

Ah, but don’t forget, I ordered two bubbles. The other one is for my similarly cursed dog, who was resting her lamp-shaded head on my foot and howling piteously in pain. You see, we’d just gotten back from an emergency animal hospital where she’d had a 4-inch long, 1-inch wide plank of wood removed from her right eye.

Yes, my dog had a plank of wood stuck in her eye. Well, to the side of the eyeball itself, where it sliced through her mucus membranes and sliced all the way back to the bony orbital near her brain, narrowly missing her optic nerve. At one point, we didn’t think she’d even be able to keep the eye, but she did.

It was a hideous sight, opening the back door and finding her sitting there waiting to come in, this huge stick in her eye. It didn’t even look real.

Who was I to move an animal in clear agony? And really, whose feet don’t get uncomfortable in certain positions? Even I couldn’t have guessed I’d actually hurt myself sitting there.

(Side note: she wound up going back to the hospital as an inpatient for four days and is just now starting to make a very slow recovery.) (Side note two: caring for two dogs, one of whom requires constant attention and has more meds than I do, while on crutches and painkillers, is not ideal).

I got a phone call yesterday and the person was surprised to hear me so hoarse.

“Isn’t it your ankle that’s hurt?” she asked.

“Yes, but I’ve been sick with a respiratory infection for five weeks now. I just forgot to mention that with everything else going on,” I said.

I had to laugh a little at the fact that this didn’t surprise her in the least.

So yes, I need two bubbles. One for me since obviously I can’t get out of my own way, and one for my panic-attack prone, anxiety ridden, severe food allergy suffering dog who was doing what she loved best—racing around the fenced-in yard with her best friend—when somehow she practically impaled her own eyeball.

She’s resting her swollen head on a pillow right now, and as I type, I’m elevating my swollen ankle. We definitely deserve each other.

Thursday, August 09, 2007

On Adapting, Evolving, and Why I’m the Perfect Candidate for GPS

“Head south on Main street,” my husband said.

“That means nothing to me,” I said. Which way was south from where I was? And, more importantly, where was I?

I stumbled across this wonderful Salon article penned by a woman with the exact same problem—not your average “I’m bad with directions” problem, but a very real and very pronounced spatial relations learning disability.

Similar to the author’s experience, I got tested for the disability when the humongous gap between my verbal and non-verbal reasoning standardized test scores was too big to ignore any longer. I could read before I was three, I read on an eighth-grade level when I was five, and used my photographic memory to learn all the answers on every card in Trivial Pursuit so I could beat my older brothers that same year.

Yet when the educational psychologist asked a 14-year-old me to put together a basic 7-piece puzzle of the human face in three minutes, I could not do it.

I know what a face looks like. I know seven pieces—a mouth, a nose, two eyes, etc—is not a hard puzzle. So why, in 180 painstaking seconds, couldn’t I put even two pieces together? Or match up a tree to its shadow, or any of the other basic spatial things most people can do?

Because something really screwy happens in my brain when I look at or try to visualize non-verbal images or concepts—they get flipped, reversed, thrown into chaos, and no matter how hard I focus, I cannot make sense of things.

Like the author, I don’t “do” north, south, east, or west. The only way I know where the sun rises is to remember which window the sunlight used to stream into each morning when I was a kid—since it woke me up, I could remember it.

I can’t read a map. I can’t follow directions. I get lost in my hometown, lost in the city I’ve lived in for five years; I get lost so often that almost everything is beginning to look familiar (“Oh, I know where we are, I’ve been lost here before!”) I routinely build in an extra half-hour for lost time, and my family knows to keep their cell phones on for frantic “Where am I?” calls.

It took me years to tell time on an analog clock. I still can’t do puzzles, get riddled with anxiety when navigating the labyrinthine hallways of my office building, and even though I slogged through honors calculus, I can’t add fractions, can’t reverse things in my head, and the “P” on the pepper shaker often looks like a triangle to me. I can't asseble things, and despite Scrabble scores of 400, I cannot figure out how to put the letter trays back in their slots in the Travel Scrabble edition. Getting the picture?

And yet, like the Salon author, I’ve learned to adapt. I memorize street signs, store fronts, anything with words, so that my landscape is a guidebook of verbal landmarks. I park in the same place when I return to malls, hospitals, or other sprawling places so I can retrace my exact steps. I rely heavily on my memory to re-create scenes so I know where to go, and when I get lost it my own building and bump into people, I pretend I was going to the copy machine.

I’m so used to seeing the world differently and using my dominant strengths to help balance out the glaring deficits that I don’t even think about it too much. Reading this article made me appreciate just how rote many of my coping mechanisms are—so built into my life that I barely notice them.

It’s the same sort of thing we do with chronic conditions, the changes and adaptations and mechanisms we use to deflect or diffuse symptoms. When I get winded from using the stairs on a “bad” lung day, I duck into the restroom to catch my breath. On a much larger scale, when I lost my adrenaline and my lungs spiraled downwards to boot, I focused on building a career with flexibility. At some point or another, every patient with a chronic disease faces similar strategic thinking and adapting.

Everyone’s got something to compensate for in life, whether it’s a learning disability that makes stepping out of a subway exit a daily adventure in disorientation or a serious illness that makes a simple thing like drawing a breath complicated. I really don’t believe “normal” exists—all we can do is live our lives in such a way that we maximize our strengths and minimize our weaknesses. That’s the ideal, anyway, though getting to that point is the harder part.

Monday, August 06, 2007

The Tale of How I Got a Clue

I’m twenty-seven years old. I’m a married woman. I work at a university and write for several publications. I’ve got my life together and the frequent infections and crises that are part of living with illness do not faze me much at this point. And yet when I was sick last week and stuck in my house, my parents insisted on stopping in just to say hello. You know, just to make sure I was still breathing and all. Even though I spend weeks like this every year and I’m always okay in the end.

But I think I’m finally getting it, this whole protective parent thing.

Let me tell you a little story I’m calling “A Tale of Two Dogs.” Fear not, this is not ubiquitous pet-blogging, I am actually going somewhere with this, I promise.

Let’s call Dog #1 Shadow (as in, scared of her own). Shadow didn’t have the easiest start in life. She was bounced from kill shelter to kill shelter as a puppy and was conditioned to think being scared of everything was okay. Even after she found a home, Shadow went through a lot of crises and stress in her young life, and though her owners did everything they could for her, sometimes things happened that were out of their control and they couldn’t make things easier for her. So many things scared her: sounds, things that moved, strangers, voices, even her own darn tail when it hit the French doors by accident. Shadow is a loving, loyal girl. She loves parks and walks, running and chewing bones—that is, when her problems don’t overshadow everything else, when they allow her to do the things she loves.

And then there’s Dog #2, whom we’ll call Bull (as in, in a china shop), despite its gender inaccuracies. Bull is a happy-go-lucky kind of girl. She is fearless and playful, she leaps into life before she’d ever consider looking, and is the rough and tumble sort who enters a room and instantly makes herself at home. She flings herself into pools, she chases balls into walls and bounces off them without skipping a beat, and she wags her tail with such fervor that she knocks herself over in excitement on an hourly basis. It is a nice thing to see, this playful exuberance, this innocence with which she approaches life.

As a friend of mine would say, to boil things down into an executive summary, consider the following example: Bull and Shadow are frolicking in the yard. The sprinkler heads spring to life. Bull bounds toward them with glee, trying to catch the water in her mouth and batting at the spray with her paws. Terrified by the sound and the motion, Shadow lurches herself across the yard and scuttles under the porch, tail between her legs and ears pinned back. On this day, she cannot enjoy the simple acts of living that Bull can.

Bull is the new girl in town. I know that I will love Bull and Shadow equally, that I will appreciate their quirks and talents and funny little ways equally. No question about that. But I will always more about Shadow, will always be that much more protective and alert when it comes to her because we have been through so much and I know that life will always be a little bit harder for her. Bull is a grand girl and will be fine; with love and an endless supply of tennis balls, she’ll find her way in this world. She won’t need me the same way Shadow does. She is lucky in that way.

Maybe it’s a stretch, maybe I spent too much time in rescue shelters this week and the lack of air conditioning and the stench of panting dog and stale urine went to my brain or something, but I can’t help feeling that this must be a tiny little slice of what it’s like to be parents. Parents who have healthy children and sick children, who love them each without limit and love them for the individuals they are—and who will not ever be able to shake that instinctual urge to protect the one they’ve been through the trenches with, the one whose problems (physical or, like Shadow’s, emotional) sometimes make everyday life that much harder. It is not a greater love than they have for anyone else, and it is not a smothering love. But it is a love that speaks of a very different bond, one that cannot be replicated or truncated.

I’m twenty-seven, a married woman with a career and two dogs. And yet my parents flood me with “How are you feeling?” phone calls the minute a fever spikes. You tell me, am I onto something here? If so, maybe I can tone down the exapseration with which I reply, "It's just an infection. It's not a big deal."
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