New Year's Notes from Sick Bay

As some of you regular readers know, New Year's has special meaning for me. Four years ago this evening, I met the man who would become my husband. I had also just gotten out of the hospital again, and that winter marked a turning point for me in terms of diagnosis and treatment. Since then, every New Year's that I'm not in the hospital or acutely ill is a milestone.

Healthwise, I've come a long way since then.

We've come a long way since then, and each year we mark each New Year's with a special dinner or celebration.

Not this year. He's bedridden with a stomach bug that has left him dehydrated and weak, and I've come down with another respiratory infection. So we're spending New Year's in sick bay, armed with tissues and tea cups, our fancy dinner out likely replaced with chicken broth and ginger ale.

We were at a wedding this past weekend--an especially lovely and joyful one--and the "in sickness and in health" sentiments are fresh in my mind. Eh, so we won't have expensive wine and good food. Who cares. At least we're in the trenches together--and since neither of us are in the hospital, it's still a good end to the year yet.

***
Speaking of being in the trenches, the December Pain-Blog carnival is up now at How To Cope with Pain, including an entry from A Chronic Dose. During the last week of each month, the best posts of that month are highlighted. New bloggers are always welcome to contribute. There's plenty of good reading and tips to start 2008 off the right way!

***


A Chronic Dose has been nominated for the 2007 Medical Weblog Awards for Best Literary Blog (my little MFA heart is fluttering just a bit at this) and Best Patient Blog. It is an honor to even be nominated and stand next to such high-quality sites, so I thank you very much for the nod. Voting for the finalists begins Jan. 8th.

News, Updates, and 2007 At a Glance

Before I take a brief look back at 2007, here are some recent headlines to think about as we move towards 2008.

The relationship between Pharma and physicians is a complicated and often controversial one, and I’ve noticed a lot of media coverage about it recently. Check out this Slate article about off-label prescription use—it pits the instinct of the physician against the “industrial-government-insurance complex of medicine's last quarter-century” and is an interesting read, especially if (like me) you’ve been prescribed medicines for off-label uses before.

In a different angle of the Pharma-physician phenomenon (oh alliteration, how I love thee), this Boston Globe article discusses tough new policies limiting the amount of interaction and influence drug companies have with doctors at UMass Memorial Medical Center. Sounds promising, but its feasibility is a consideration.

Now that I’ve taken stock of the last week’s headlines, it’s time to reflect on some of the headlines that have appeared on this site. Perhaps this retrospective indulgence is merely that, but with a tiny bit of hindsight, I think I would categorize 2007 as a year of awareness—of being aware of how chronic illness affects those around us, of being aware of what others are going through and what lessons can be taken from that.

There have been ridiculous tales of medical mishaps and comic calamities (okay, I will stop with the alliterative abundance here, but who said anything about assonance?), and plenty of new voices who have made me laugh and impressed me with their grit.

There have been moments of profound grief, at once intensely personal and wholly universal, as well as moments of humility in the face of someone else’s pain. I’ve realized how much I owe the healthy one in my marriage, and how precious timing is when it comes to the people I love.

I’ve looked at books and the process of storytelling itself for inspiration and understanding. I’ve had some personal highs and I’ve only been in the hospital a few times, a different kind of personal high indeed.

From gluten wars to medicine and politics, it’s been a busy year for acknowledging and understanding disease and its many manifestations in our lives.

May you all have a happy and healthy 2008!

This Old House (The Body Edition)

I spent much of the day yesterday on a train to New York (because obviously the only thing more sane than moving three days before Christmas and becoming displaced for three weeks is squeezing in a last minute business trip the day before said move, but it was well worth it. When have I ever been known to do things in any sort of logical, tempered manner, anyway?)

I was wading through some research for a project I’m working on, but despite how interesting I found Kleinman’s theory of sociosomatic illness (and I really did), I couldn’t string together two coherent sentences on it. For one, my body was achy and tired from packing boxes, stacking them, and packing some more. My brain was whirring with logistical details—movers, lat minute requests from our buyers, Christmas gifts that needed purchasing—that kept creeping into my highlighting and note-taking routine.

But more than anything, the New England coastline makes for a pleasant distraction. The only thing I found more enjoyable than looking at the icy waves and scenic vistas was looking at all the different types of homes that dotted the shoreline.

True, I have moving on the brain, but I have always been fairly obsessed with old houses. This train ride gave me plenty of chances to feed my fervor. Really, is it surprising that the structurally defective girl likes houses with wonky hardwood floors, sloping corners, and squeaky joists? No sparkling new boxy Neo-Colonials with their pristine, virgin floors and sensible open floor plans for me. If there aren’t systematic idiosyncrasies—or what I prefer to consider charm--I’m not interested.

Part of this is situational. I grew up spending the summers on Cape Cod in a neighborhood where most of the houses were grand rambling affairs, circa the 1700 and 1800s. Most of the places I’ve lived in the city have been old—in Boston, this comes with the territory—with crooked angles, oddly shaped windows, and steep staircases.

One of my goals in life is to someday own a house with a turret. As long as the turret is accompanied by a creaky old front porch for Scrabble playing, my husband is on board with this. But besides the geographical aspect, I think I just have a more finely attuned appreciation for large-scale quirkiness.

My middle fingers have broken so many times that sometimes they just get stuck in the bent position and it is impossible to wrench them straight again. When I am fading, apparently my left eye doesn’t open as much as my right one, a bizarre little factoid my husband uses to gauge my energy level. I routinely get high fevers for no obvious reason. I can predict changes in the weather by the thickness of my lung secretions, and I’ve been known to grow bacteria not normally found, oh, say, in North America.

And when it’s humid out, my curly hair actually grows more horizontal by the minute (I have witnesses), just like a real, live Chia pet. Good times.

I’d like to say that like the old houses I adore I have good bones; however, we all know that would be an outrageous lie. But like an antique Cape coming out of a long, stormy winter, I like to keep things…interesting.

Thank goodness my husband likes long-term maintenance projects.

And turrets.

***

In all of the holiday madness, don’t forget to swing by Medgadget to cast nominations for the annual Medical Blog Awards.

Food Allergies and Famous Bedfellows

I haven't written about celiac disease or related food allergy issues recently. (Remember that three week stint of chicken broth, pureed food, and sparking water with a straw? That made it pretty easy to avoid gluten or dairy.)

Liquid diet aside, I haven't had too much to say about living with dietary restrictions. I've figured out ways to make home recipes tasty and safe, and I've learned what--and more importantly, how--to ask when I'm dining out. (Remember that whole selling one place and buying another? That transaction has certainly cut down on our dinners out, anyway).

But for everyone out there who is gluten-free, dairy-free, or suffers from any type of food allergy, I do have something to report. This week, Ming Tsai, nationally known chef and local celebrity and owner of Blue Ginger, was at the Massachusetts State House with his son, who has suffered from multiple food allergies, to urge legislators to pass a bill that would make dining out a lot easier for patrons and employees alike.

I’ve eaten at Blue Ginger, so I can vouch firsthand for its highly acclaimed food. It was one of the more memorable meals we’ve had. But I can also vouch for the fact that when I informed the waiter about my condition, he snapped into action, heading back to the kitchen and returning with a list of appetizers and entrees that were completely gluten-free. He also said that in the future, if I give the restaurant 24 hours notice they can usually prepare something special (and safe).

I was impressed with the service and the thoroughness, not realizing at the time that Ming Tsai is the national spokesperson for the Food Allergy and Anaphylaxis Network (FAAN). I found out later that he keeps a sort of “Bible” of recipes and ingredients in his kitchen, even including the ingredient lists for whatever prepared foods (think soy sauce) his dishes may require.

I think it’s great that such a well-known chef is putting himself out there and advocating for awareness of food allergies and dietary restrictions. The real story, though, the one that affects so many people who don’t live close enough to Blue Ginger to bask in its food-safe abundance, is the bill itself. It would require restaurants to:

--Prominently display a poster about food allergy awareness in a staff area
--Put a notice to customers on the menu that it is their obligation to inform their server of any food allergies
--If the restaurant serves 50 or more, obtain a master list of all ingredients used in each recipe that is available to the customer upon request

For more details, check out the language of the bill here.

As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.

I spent a lot of time in a hospital cafeteria over the past week, and each entrée and side dish had all the ingredients listed, including a bolded section that highlighted any of the major allergens, like dairy, nuts, soy, wheat, etc. It made such a difference, and the fact that I was able to zip through the line without pointing and asking about every item made it a lot more effective for all the non-restricted people in line, too. Win-win situation all around.

The key here is knowledge—people can do so much more when they have the right facts at their disposal. Not every restaurant can be a Blue Ginger, but with the right basic protocols in place, they can certainly be as prepared.

’Tis the Season...?

I’m spending the day in the hospital, waiting for someone I love to get out of a long surgery. I came prepared—laptop, headphones, research I should be doing, and of course, several glossy magazines. (What can I say? Distraction is the best antidote for worry). I noticed a definite theme running through all of the magazines—this is the season for stress. There were tips on stress-free shopping, stress-free entertaining, stress-free family functions, and stress-free travel.

It made me think of a recent post I wrote about stress and illness and the tenuous relationship between the two.

Just in case I haven’t already hit you over the head with it (let’s be serious, if you’ve read the other post, you know my position), I believe in the distinction between stress causing illness and stress exacerbating illness. As in, stress did not cause the genetic respiratory condition responsible for so many hospitalizations—my suspect genes did. As in, stress did not make me cough for 17 hours straight and go into respiratory failure, but 20+ years of the wrong treatment for the wrong disease certainly contributed.

Did stress play a role in making the infections and recovery worse? Sure it did. Stress takes energy away from recovery. I’ve seen stress make diabetic blood sugars skyrocket, I’ve seen stress make arthritic joints ache with more severity, I know this relationship is a strong one.

As firmly entrenched in my position as I am, my husband said something the other night that gave me pause. In speaking with someone else about my health, he mentioned that I was much more stable the past few years because of the lifestyle changes I’ve made. “Your schedule in college would have made the healthiest person run down and sick,” he said.

He had a point. In college I worked anywhere between 30-40 hours a week on the campus newspaper (usually from 5pm till the middle of the night), got up early to fit in five courses a semester, interned another 15-20 hours a week, and did lots of other random stuff. I was either running around on 3 hrs of sleep and heavily over-committed, or I was an inpatient.

For three years now, I’ve proudly asserted that the reason I am in the hospital less often and for shorter periods of time is because I finally have the right diagnoses for several of my health problems. I’m getting the right kind of preventative treatment (daily chest PT), I’m on the right medicines, I’m seeing a doctor who specializes in what I have. I’ve stopped the vicious cycle, and better understand how to cater to my persnickety lungs and deficient immune system. I firmly believe if I hadn’t gotten this diagnosis and wasn’t doing all these things, I’d still be making trips to the ICU. It surprised me that my husband hadn’t factored this into his conversation. To me, it is all the difference in the world.

And yet, I have made a lot of lifestyle changes. I don’t survive on three hours of sleep per night (adrenal failure makes that one pretty impossible). I am not so desperate to prove I am not sick by taking on too much. I’ve made sacrifices and compromises both financially and professionally to ensure I am not in that vicious cycle again. I’m trying to set myself up now for a future that while promising, is not as certain as the present.

So there is some truth to what he said, certainly. I’m not sure I would have made those changes, would have matured in the same way, if I hadn’t had the diagnostic breakthroughs. But I also believe 100 percent that if I were still living my life the way I used to, I would be sicker. I’d be more run down so infections would hit me even harder. This is not wisdom or enlightenment so much as it is common sense, and I think it applies to anyone, regardless of health status.

(And yet if I were to run into a certain doctor from my past today, the tiniest part of me would want to tell him: It’s the holiday season. My grades are due in two days, and two huge freelance projects were due this week. I just sold one house and bought another (its own unique brand of home inspection-acquired stress) and my life is half-packed, the boxes stacked and ready to move three days before Christmas (good timing, much?). My computer died in the midst of the major deadlines, I’ve had the plague since sometime in July, and someone I love is having invasive surgery as I type. If I were to pick a stressful couple of weeks, it would be these.

And yet I am breathing just fine, thank you. Stress, huh.)

But of course I wouldn’t say it. I would nod a hello and go on my way, my indignance tempered by gratitude that at least I now know what’s wrong, and I know what choices I should make to keep me well.

Seven Random Things

Last week I was tagged by Dayna at A Bug's Life and Barbara K at In Sickness and In Health for the "7 Random Things" meme. I am getting to it a few days later and I am studiously ignoring my husband's little smirk that says "Only seven random/weird things? However will you narrow it down?" but I am getting to it nonetheless.

With no further delay, seven things you wouldn't necessarily know from reading this blog:

1. I once broke my finger when someone hit my hand with a balloon. Yes, a balloon. When I rock my bone density scans, I am the only one there under 80. Good times.

2. I have an amazing capacity for monotony--when writing my book, I listened to the same song on repeat. Six days a week for six months. I only changed it once for half of a song and when I did, I couldn't string a sentence together.

3. I spent a year studying at Trinity College, Dublin and while there, I went spelunking off the west coast of Ireland, near the Cliffs of Moher. See #1 on this list to understand why my relatively unscathed return from this trip was momentous.

4. I was a competitive figure skater (solo and precision team) for several years when I was in grammar school. Again, see #1 on this list and pretty much any random entry on this blog to see why that could never end well. I had heart, but my various plaster casts made for some lopsided spins and jumps.

5. I went to an all-girls' Catholic high school run by nuns. Instead of bells to signal the beginning/end of class, we had classical music. If you hadn't arrived at your next class by the last violin strain, you were in trouble. Looking back, this seems really weird to me, but at the time I thought that was how everyone did it.

6. My mother wanted me to be a Latin teacher when I grew up. I was kind of a Latin dork. I got perfect scores on the National Latin Exam and spent surreptitious weekends in May competing in the state Latin/mythology championships at the behest of the little nun who taught my high school Latin classes. My brothers forbade me from telling anyone this. I've forgotten a lot of what I knew then, but every now and then an arcane mythological reference comes to me or some Latin idiom crosses my mind and I realize I am still a dork.

7. I'm extremely competitive and I am a terrible loser. My husband and I have a running Scrabble competition--I am up 37 games to 32, but who’s counting? Whenever it looks like I am going to lose, he claims I suddenly get "really tired." Lame of me, I know.

According to the rules, I must now tag seven other bloggers:

Girl, Dislocated, because she is hilarious. And has broken waaaayyy more bones than me!

I'd Like to Buy a Bowel, because she is also really funny, and brings new meaning to toilet humor

Rickety Contrivances of Doing Good, because she is so creative and reflective

Sick Girl Speaks, because she is incredibly wise. (She also just published her own book and I had the pleasure of reading it!! Wonderful work, Tiffany!)

Sick Momma, because I think she'd have really interesting entries for her list of seven things

Fluent, because I think her arm is better and I'm hoping she's up for it!

A Medical Mystery, because she's really honest

Here are the rules:
1) Link to the person that tagged you, and post the rules on your blog.
2) Share 7 random and/or weird facts about yourself.
3) Tag 7 random people at the end of your post, and include links to their blogs.
4) Let each person know that they have been tagged by leaving a comment on their blog.

Autobiography of a Face (and November Carnival Ready)

Before I get into anything else, let me make the following premise: In no way am I comparing a measly two weeks with a swollen jaw and a liquid/pureed diet to a potentially terminal cancer, removal of one-third of the jaw, and a lifetime of pain and reconstructive surgery.

That story belongs to the late acclaimed poet and writer Lucy Grealy, and it is found in her remarkably candid memoir, Autobiography of a Face. I first read this for a nonfiction book workshop in my MFA program and of all the books I read for the course, this is one of the ones I could never forget.

Grealy writes about truth, sickness, suffering, beauty, perfection, and loneliness. The facial disfigurement she experienced after her tumor was removed and the endless rounds of hospitalizations, surgeries, and unmet expectations that followed are not rendered in strokes of sentimentality or self-pity. As a narrator, Grealy is at once irascible and inspiring, frustrating and courageous, determined yet jaded. She doesn’t hide her flaws, both the physical as well as the emotional.

I’ll be honest, some aspects of the book irritated me—why, for example, does her twin sister only come up once or twice in the whole story?—but even beyond the dramatic events and the soul-churning upheavals, the writing itself is beautiful and lyrical.

I was reminded of this book at several points during the last few weeks. For Lucy, opening her mouth wide was an excruciating ordeal, one made even more awful given how much dental and reconstructive work she needed. Eating was a daily exercise in futility; not only was it hard to open her mouth, but she lost many teeth to her various surgeries and complications. These things paled in comparison with the taunts of her schoolmates and the devastating impact looking different had on her psyche, but they had an impact nonetheless. Simple things like swallowing, chewing, laughing or yawning should not have to be conscious things.

Again, clearly two weeks of chicken broth and liquid food does not give me any rights to claim kinship or understanding. I know that. But if nothing else, recent events have rekindled my respect for a writer who died too young, whose words contain grace and eloquence even when they are baring unflattering truths, and whose perception is unsettling:

“I used to think truth was eternal, that once I knew, once I saw, it would be with me forever, a constant by which everything else could be measured. I know now that this isn’t so, that most truths are inherently unretainable, that we have to work hard all our lives to remember the most basic things. Society is no help. It tells us again and again that we can most be ourselves by acting and looking like someone else, only to leave our original faces behind to turn into ghosts that will inevitably resent and haunt us…It suddenly occurred to me that it is no mistake when sometimes in films and literature the dead know they are dead only after being offered that most irrefutable proof: they can no longer see themselves in the mirror,” (222).

***

Since we’re on the subject of pain (excuse the transparent segue here), How to Cope with Pain is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month's best posts. New bloggers are always welcome to contribute. Check out November’s edition here. You may just recognize someone here and there...

Giving Thanks Recap (Straw included)

Okay, so perhaps this is the obligatory (and late) Thanksgiving post, but maybe there’s a reason it is obligatory—how can you not stop and reflect a little bit when you’ve just celebrated a holiday whose main purpose (besides setting up those Black Friday sales, apparently) is to express gratitude?

Let me start off this discussion by letting you know I am an exceptionally classy girl. I drink my champagne (teeny tiny amount, given the massive antibiotics) out of fine crystal. Sparkling crystal, with a satisfying weight and heft.

With a straw.

Yes, a straw. The straw that accompanied my drinking of water, juice, and other clear fluids and was only replaced by a demitasse spoon when I tried to eat my Thanksgiving chicken broth and pureed potatoes. Somehow, the nasty infections I’ve had the last month or so gravitated to my jaw, which is all swollen and inflamed. It’s been all broth, all the time in my world.

But I didn’t really mind. For one, it was still better than the festive Thanksgiving can of vanilla Ensure I had a few years ago when I was six days into an inpatient admission. For another, since I am both gluten-free and dairy-free and the best of the traditional family recipes depend on copious amounts of both gluten and dairy for their flavor, I have long since abandoned the notion of getting too excited for Thanksgiving dinner.

Which, I suppose, is my point here. It doesn’t matter what foods you can or can’t eat. For one meal, it doesn’t matter whose heart has stents, whose sugar needs to be tested, whose back hurts or whose lungs are congested. It doesn’t matter how many aches and pains are present, who is tired or run down, who is coming down with something or who isn’t yet over something else. It doesn’t matter how many body parts don’t work right.

The food is important, the traditions have meaning. But they only have meaning because of the people who have created them and maintained them, the people who gather around the same table every year, making toasts with heavy crystal and passing plates around. So even if you can’t eat the pie or the stuffing, even if you pass on the dessert because it has too much sugar, even if you need some help passing a big bowl of potatoes because your arms are too weak, you’re still part of something larger than any recipe or any one meal.

So for that something larger, and for all those parts that do work right, and for the gift of presence and participation—I am grateful.

Structural Humor and Other Musings…

Life has gotten in the way of posting lately, what with various infections landing me in the hospital, freelance deadlines, student papers, starting the lovely process of selling one home and buying another…But in the midst of the pre-Thanksgiving log jam, I found this little anecdote highly amusing:

We had a home inspection scheduled for the same weekend I ended up in the hospital. We told my parents that we were bringing in a structural engineer to look at some issues that came up during the inspection, but between coughing and not having a voice and the general craziness of rapidly declining health, I hadn’t mentioned this development to anyone else. A well-meaning family member called my mother to see what was new with me. My mother replied,

“Well, the structural damage isn’t quite as bad as it could have been.”

Confused, the other family member was left to ponder if she was referring to me or to the house. I was the obvious choice, and he felt confident in his selection.

“No, no, I’m just as structurally defective as ever,” I said when he relayed this to me.

Silence.

“But it’s okay. I would have picked me, too.”

***

As I told my editor this week, I think I got my end-of-semester illness out of the way early this year. Ok, it’s still lingering, but I remain optimistic. For as long as I can remember, (we’re talking nursery school here) November and December have always been plague-ridden months in my world. When I was in grade school I always had surgeries right around this time—a few times on Christmas Eve day, even—and throughout college I always wound up in the hospital near or during finals.

Awesome timing.

In the dark days of misdiagnosis, when my doctors were scrambling to figure out why my lungs got worse no matter what they did or how many steroids I took, they were wont to ply me with this: “Are you sure you’re not stressed out? Maybe stress is causing all these exacerbations.” Because we can’t figure out the real problem, we’ll put it back on you.

As calmly as I could, I explained time and again that being stressed did not make me sick. Being sick and knowing I was then going to fall behind in studying for finals and miss all the end-of-semester festivities? Now that made me stressed. They had it backwards.

Know what I mean? I'm not foolish enough to say that stress doesn't make health conditions and situations worse. Of course it does, and of course it has for me. But it's a cop out for someone to say stress is the cause of illness simply because he or she can't find an obvious answer and isn't willing to dig deeper to find the correct one.

I never backed down from this assertion that they had it in reverse, even when I missed both Thanksgiving and Christmas one year because I was in the hospital. Luckily, I now have doctors who know that the reason my lungs don’t respond to asthmatic protocol is because my problems are not caused by asthma. (Cue resounding duh here). But I have been thinking a lot about this time of year, and why it’s usually such a disastrous period of time.

It’s really not that complicated. It’s cold and flu season. More people are clustered indoors because it’s colder out. There are more social engagements to keep us out late, and more errands and cleaning and cooking to do on weekends when we would normally have some downtime. There’s a crunch to get big work projects finished before year’s end, so even though we’re out later and more often, we find ourselves getting up earlier. And no matter how healthy we are otherwise, the more run down we are, the more susceptible we are to the many infections that travel around this time of year.

Somehow, this seems like a much more plausible explanation. And it is one more reason why I have never backed down.

On Options...

“ I just wish I had some better options,” a colleague said to me recently. She wasn’t someone I knew well, and it started out as one of those casual “how are you?” kind of talks.

At the beginning of our conversation these are the thoughts that ran through my mind: I hope it’s not still raining. My throat is burning, I think I am coming down with something. I am way behind on my novel’s word count. Ouch, my throat is really burning. Do I have a fever?

I listened, at first exchanging pleasantries and then nodding in commiseration with her plight, even though I couldn’t really commiserate.

“You see, it’s like I have to choose between paying the rent and health care,” she said, an untenable position made even worse by the state’s new health care law. “I need a place to live so I pay the rent, but then I go into more debt for the health care.”

That’s a pretty lousy choice to have to make, particularly since it really isn’t even a choice. You need somewhere to live, and if you’re sick, you need medical attention.

I turned away a little to cough and when I faced her again my face felt flushed. Perhaps it was from the cough, or the fever that would ultimately knock me down for several days, but I also think it was from that squeamish uncomfortable feeling that comes with knowing you are a “have.”

And someone else is a have-not.

In a way, it all boils down to options. I could never imagine the possibility of paying for my care out of pocket, because the expenses would grind me into the ground almost immediately. It simply wouldn’t be an option for me.

But what if it had to be?

This is an intensely political issue, but I am coming at it from an emotional perspective here. I have sighed when I’ve written large checks for hospital bills, cringed when I’ve needed new medications that are expensive, and I’ve watched with a mix of indignation and sadness as coverage of my daily chest PT sessions—the preventative care that does much to prevent prolonged (and costly) hospitalizations—have been cut down further and further the past three years.

I find many things confounding and unfair about our health insurance system.

And yet that on that cold, rainy day when I knew I was definitely getting sick, where I coughed and wheezed and listened as my colleague said she may have to move of the state because of its prohibitively high cost of living, there was something else I felt. Something besides the jarring cough, the first flush of fever, the awkwardness:

Relief that I did not have to choose between my house payment or my health payment. Gratitude that while my coverage has decreased over the years, I am still covered. Gratitude that when I went home that afternoon—I wouldn’t be able to leave the house again for several days, as it turned out—I would have a supply of medicines and treatments, a doctor who was just an e-mail away. I would have options.

Since I wrote this post on watching someone you love in tremendous pain, I have been thinking a lot about gratitude, and the mix of emotions that come with it. I hate that someone I care about is suffering, but I know I am lucky I do not have her pain.

Likewise, I may have lungs I would classify as dodgy on their best day and down right contrary on their worst, or an immune system that’s about as good a defense system as an unlocked door adorned with a “Come on in” sign, or an endocrine system that is routinely haywire, for example, but (you knew a “but” was coming, right?) this is not all that I have.

I have legs that may hurt sometimes but get me where I need to go. I have a healthy heart and good blood pressure and when I go to the gym and feel my muscles work, I am proud of them. I have many parts that work well. I also have a network of people who love and support me, who watch out for me, who ferry me tea when I cannot stand and who encourage my greater goals when I am scared I will fall down.

Someday I will write a post about the current state of our health insurance system. Maybe I’ll even commit to a course of action for trying to resolve some of these glaring problems, because with each word I type I am conscious of the many, many people would not be in the position to say this:

I have options.

New Voices (Who Make Me Think)

Dayna at A Bug’s Life is a new reader of mine who not only runs a wonderful blog about parenting children with chronic illness but also tagged me recently with another Thinking Blogger Award for this post—thanks so much!

In the spirit of discovering new blogs, the five sites I have selected for Thinking Blogger Awards are either fairly new to me, fairly new to the blogosphere, or both:

Hemodynamics: Joe is a first-year intern in a large academic hospital. He also happens to be an eloquent writer who contributes to NPR and is writing a book, among many other pursuits. Check out what a powerful combination that is.

Sick Momma: Aviva is a longtime journalist who is now a stay-at-home mom. Or she was, until a serious illness suddenly took over her life in June of 2007. Now’s she on a path to figure out what’s wrong with her and make some sense of all the changes—and she does it with honest, engaging prose.

I’d Like to Buy A Vowel: As you can see from her blog’s name, Alicia approaches living with a not-so-funny chronic illness with witty, sarcastic aplomb, and her musings are compellingly universal yet specific to her. You’ll love the voice here.

A Medical Mystery: JC might have a rare disease and her fair share of medical mysteries, but she’s also got a good sense of humor and a lot to say about being what some people have called “that girl with the bone thing.”

Respiratory Therapy Cave: Freadom is a respiratory therapist. RTs are a huge part of my life, both inpatient and outpatient, and it’s really interesting to see the perspective from the other side—especially when the writing is thoughtful and honest.

For the winners:
1. If, and only if, you get tagged, write a post with links to five blogs that make you think.
2. Link to the blog so that people can easily find the exact origin of the meme.
3. Proudly display the “Thinking Blogger Award” with a link to the your original post

Anatomy Lesson

Various things I’ve learned recently:

That if someone cannot walk two steps on their toes or heels without trembling or falling, something is seriously wrong with their back. (Seriously.)

That if someone’s spine is crooked, fluid-filled, and riddled with bone spurs and if their disks have slid far enough in the wrong places, the pain can radiate not only down their legs and into their feet, but it can also inch up towards their head. (It’s equal opportunity!)

That when crawling seems like a reasonable option, probably that person’s quality of life could improve. (A modest request, really.)

That it is possible for the body to have learned to tolerate far too much pain for far too long. (And the rest of us are wimps, no matter what we’d like to believe.)

That even if someone takes the right medications, does the right exercises, and makes many accommodations, the body is a sneaky, shifty thing that does not bend to mere wishes. (And MRIs do not lie.)

That when doctors talk about removing parts of someone’s vertebrae and fusing other parts of the spine together, they intend to do so with pieces of that person’s own bone. (Because at first we thought it could be some random person’s bone, and that seemed sort of gross.)

That even though someone can look so small and vulnerable on the exam table and their shoulders might even quiver a bit, their eyes can still be fierce with a strength few people possess. (I mean fierce.)

That watching someone you love in excruciating pain makes you feel incredibly frustrated and completely helpless. (But then you compare your discomfort with their pain, and you realize it isn’t about you.)

Later as you stretch, or when you bend down to pick something up, or walk from the bus on your own two feet, and you don't feel a tingle, not at ounce of searing pain you know exists for someone else, you cannot help but think, I am lucky.

Another Blog Carnival of Insights About Illness...

How to Cope with Pain will now be offering a monthly pain-blog carnival. Each edition will run during the last wek of the month and will feature that month's "best posts" from featured bloggers, including A Chronic Dose. Definitely check it out, and new bloggers are always welcome to contribute!

Speaking of New Initiatives...

While we're on the subject of taboo-breaking, consider this: Paul Levy, President and CEO of Boston's Beth Israel Deaconess Medical Center (a place I know well) recently started a blogging. Running a Hospital discusses (you guessed it!) issues of health care policy and practice in running a hospital. It is a fascinating read, and is causing somewhat of a stir--how many hospital CEOs do you know maintain a public blog?

He hosted Grand Rounds this week-check it out here.

Another Extension of Medicine and Social Networking…?

I don’t have too many insights on chronic illness this week. I’ve been sick, the malingering, annoying, infection-y kind of sick, and well, there’s really not too much to say about it. It’s just an occupational hazard. Plus, with the book wrapping up soon, the hometown team on a World Series streak, and the upcoming NaNoWriMo, there have been plenty of distractions.

So I’m looking outward with this post, and can’t help picking up the topic of social networking and medicine another time. As discussed here and throughout the medical blogosphere, there are many benefits to the merging of medicine and social networking: Patients can connect with each other and share insights and information and practitioners can exchange tips and resources.

Between Facebook, MySpace, and LinkedIn, there are all sorts of ways for people to connect personally and professionally. It makes a lot of sense to me to have a site specifically designed for physicians, one that allows them to discuss techniques and best practice information and doesn’t require them to use their full names—enter Sermo.com, a Cambride-based social networking site for licensed physicians. After all, as this article points out, doctors are usually more focused on discussing treatment methods than the traditional networking business people do.

Since it launched last year, Sermo has attracted 25,000 physicians. I consider this trend to be largely beneficial—if our physicians are flummoxed by a set of symptoms or want to bounce ideas off of colleagues who specialize in their field, then providing them a space to do this gives the patient the potential for better outcomes.

What’s interesting about Sermo is that it is financed by hedge funds and other companies who have access to the discussions physicians have on the site. This allows them to track trends and controversies in the medical field and the doctors’ names are kept anonymous.

Like many discussions that involve pharmaceutical companies and their interactions with physicians, this interesting financing approach has the potential to become controversial when you add Pharma to the mix.

As reported in this article, drug giant Pfizer recently announced it will partner with Sermo. This arrangement will give the drug manufacturer—which laid off 20 percent of its domestic sales force in 2006—another direct route to reach in the hopes learning more about prescribing preference. Pfizer-affiliated doctors will be able to speak candidly with Sermo users, something that is either smart marketing or seriously worrying, depending on your point of view. Some think it’s a better alternative to swarming physicians with office calls, but others worry about the far reach this latest extension of social networking affords pharmaceutical companies.

So what do you think? As patients, does knowing that a large drug company will have unprecedented access to physicians make you nervous, or do you see it as an inevitable and positive technological step?

In other medical technology news, I came across this tidbit in Newsweek: the Cleveland Clinic has introduced a program called MyChart, which allows patients to access their online medical records through a password-protected site. The hope is that this access will mean better self-care and disease management, and preliminary results are promising: diabetics who used MyChart showed better control of their blood sugar.

At first glance, what Newsweek calls a “taboo-breaking initiative” (and I don’t disagree with that assessment) seems both positive and forward-thinking, harnessing the power of technology to help patients take control of their health. But a discussion in one of my classes got me thinking about the other potential outcome of this—what about those patients who would receive more harm than benefit from unfettered access to their medical records? One example that comes to mind are patients with eating disorders who are too focused on their weight and might get worse if they see numerical evidence they have gained any pounds.

Obviously I’m not sure what kind of safeguards or restrictions on use are in place, and I do think the precedent set by MyChart is a significant one. But in a world where so much can change so quickly, it’s also helpful to play the devil’s advocate now and again—especially when we’re talking about our health.

It's for the Kids...

Something I think about a lot is the idea that as technology advances our understanding of diseases as well as our treatment methods for them, seriously ill children will live longer and hopefully qualitatively better lives.

So what should medicine and society be doing to keep up with them?

I’ll admit I have a special place in my heart for peds patients. A lot about the way this health care system works confounds me, but sick kids? I totally get them. I was fortunate enough to grow up as a patient in one of the best pediatric hospitals in the world, and as an adult I had the chance to work at a community home for the families of long-term inpatients at the same hospital. My work there inspired me to apply for a fellowship that helped support my development of a creative writing program for chronically ill pediatric patients.

So yes, I’m always on the lookout for innovative ways to make children’s lives better.

Enter the Medical Day Care Program (MDCP) at the Franciscan Hospital for Children. According to a recent article, the goal of the MDCP is “providing expert nursing care and educational enrichment to help children with complex medical conditions lead normal lives.” Field trips, arts and crafts, games with friends—these are experiences all children should have, and children with serious medical conditions shouldn’t be left out of them.

The MDCP also accomplishes an equally significant goal: helping the parents and families of these children. Caring for children with serious medical conditions is an incredibly strenuous task, so giving these parents a well-equipped place to leave their children during work hours makes a lot of sense, doesn’t it?

Here's another program that makes a lot of sense: I recently read an article about a new program in Massachusetts that gives palliative support to the families of seriously ill pediatric patients.

As quoted in the story, “We're trying to improve the quality of life and make the process of going through this type of illness more bearable,” said Stewart Landers, who oversees the program at the state Department of Public Health.

I’ve seen firsthand how crucial the support of hospice care is for patients nearing the end of life, and for pediatric patients, the issues are particularly challenging. Typically, someone can qualify for hospice care if they have fewer than six months to live and agree to forgo curative therapies. Palliative care is less common among pediatric patients because their prognoses are less certain and parents don’t want to give up on potential cures. Now, with less of these restrictions and more understanding of the needs of kids and families, hospice care is available for families at various stages of illness.

Though there are marked differences between the programs, common threads remain: sick children require (and deserve) specialized services to make their lives as “normal” as possible, and supporting their families and loved ones is an essential part of that process…and it’s nice to know there are organizations doing something to make this happen.

Triage (And, A Space to Breathe)

Because recent sad events have reached their inevitable end, some respite from the emotional intensity:

“I keep remembering one of my Guru’s teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you’re fortunate. But that’s not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings… It’s easy to pray when you’re in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments.” (260)

(Pause here, and apply to your own life circumstances if you are so inclined.)

The preceding quote is taken from Elizabeth Gilbert’s Eat, Pray, Love. I’m sure you’ve heard of it—according to Oprah, every woman around is reading it. Of course that’s exactly why I approached it with a bit of skepticism—surely we’ve read enough tales of down-and-out Americans traveling to exotic places and uncovering the basic truths of life that set them free from their miseries?—but I really enjoyed the book. There’s a lot to be said for figuring out how to be a whole self before you try to be someone else’s.

Abigail Thomas’s A Three Dog Life, which recounts the life she built after her husband suffered traumatic brain injury, is easily one of the most luminous, compelling memoirs I’ve read. One of its reviewers said something along the lines of it’s impossible to select quotes for it because the entire book is quotable, and I agree with that assessment. Today, however, this particular passage really resonated with me:

I thought I had accepted Rich’s accident, even though I kept putting myself in a place where it hadn’t happened yet … I thought that not accepting meant turning my face to the wall, unable to function. So now today I look up the word acceptance and the definition is “to receive gladly” and that doesn’t sound right. I flip to the back, and look up its earliest root, “to grasp,” and discover this comes from the old English for “a thread used in weaving” and bingo, that’s it. You can’t keep pulling out the thread. You have to weave it in and then you have to go on weaving.” (121-122)

(Pause here, and apply to your own life circumstances if you are so inclined. Call someone you love. Tell them that.)

***
For a unit on professional writing, my students and I have been talking a lot about the concept of triaging and how it relates to health information: If you are asking readers for their time and attention, provide them with something that contains substance. Write with clarity and purpose. Prioritize your information, placing emphasis on the most important facts and streamlining the least essential.

The questions and assertions we’ve discussed are also applicable to blogging, at once a profoundly personal and widely proliferating public genre, and they are things I think about a lot: where to draw the line between being authentic (so important) and lingering in the mundane minutiae of daily life (so overdone); how to balance the privacy of others with the human need to tell a story; how to infuse humor and levity in writing without sacrificing seriousness or scholarship.

I don’t have the answers nailed down, and I know I am not always successful in my attempts to uphold these standards. But in the back of my mind remains the advice an editor once gave me, advice that applies to all kinds of writing and advice I turn to often:

If you do not have something insightful or universal for the reader to take away from your work, then try harder. You can be specific, you can be particular, but always strive to produce something greater than your singular story.

Is there anything more universal and at the same time more intensely personal than grief?

Behind Blue Eyes

One of my grandmother’s favorite stories is this:

She and my mother were visiting me at my first post-college apartment. Though the apartment itself was a complete dive in that charming, no-heat-and-mice way only 22-year-olds can consider charming, it was located in a hip, swanky neighborhood next door to an even swankier cheese shop. Armed with brie, gouda, and mozzarella, the three of us stood at the cash register, patiently waiting for our change. The man behind that counter happened to be an amateur photographer, and he asked to take our picture.

“Three sets of blue eyes, three faces so similar all lined up. Three generations. You can’t deny genetics,” he said as he snapped away. My grandmother blushed and smiled proudly.

She brought that story up several times over the past five years, always marveling at how strangers knew we were linked to each other by our blue eyes. I always wished I’d stopped back at the cheese shop and asked for a copy.

One of my favorite stories of my grandmother is this: She was babysitting the three of us while my parents were away. It was dusk on a cold February night and my brothers were playing street hockey. She and I were in the living room, each holding a thick hardcover book on our laps, completely engrossed. For different reasons, we’d both turned to books at early ages and had never let them go.I looked up and saw we were sitting with our legs crossed the same way on each end of the ottoman, our toes tapping along to the music from the Bose stereo in perfect synchrony. We spent an hour like that, never speaking.

Of the three of us, my grandmother’s eyes are the bluest. A piercing blue, not in an icy or severe way but in an intensely expressive one. My mother buys her Talbots sweaters in all shades of blue—turquoise, periwinkle, navy, royal—to bring out the color in her eyes. Now, in her blue and green johnny and flanked by a blue curtain cordoning off her hospital bed, her blue eyes are startling, especially against her pale face.

My grandmother has always been an intensely private person, and her story will remain private here. I will say, though, that from her earliest years she experienced profound losses, the kind of life-defining losses that either shut you down altogether or recast the boundaries of your survival. She didn’t shut down.

She is reserved but not shy, and her face reveals the depth of expressions she otherwise keeps to herself. A life of the eyebrow, a narrowing of the eyelid, a widening between the lashes, a crinkling at the corners—in a glance, dismay, skepticism, joy, whatever she is feeling, is evident. We often tease her about her “drop dead” look, a glance so fierce and penetrating that as children, we only needed to see it for a second to stop whatever we were doing that she found unacceptable. She can still stop my mother in her tracks with it.

Some say I have inherited that look. My husband will have to confirm this.

After the first stroke, she seemed smaller and frailer. Her eyes seemed bluer. She could speak in coherent sentences, but you could see the strain to locate the right words in her face. She scrunched it up, as if so to say to us, “Do you know how annoying this is?” But she talked, nodding emphatically in the right places and following up with questions of her own. We brought her books and magazines, but for the first time in her reading life, they were left untouched.

The human brain is an uncanny captor. After the second stoke this week, she lost the use of her right side. She cannot speak, but expends huge amounts of effort trying to make herself understood. She shook her left fist in frustration today. “I’m not going anywhere. It’s okay. You can take your time and try again,” I told her. And softer, so my mother did not hear, “Don’t be scared.”

She nodded slightly.

“Every time I see you, Dolls, your eyes are bluer than ever.” I started saying this, using her nickname, in the hospital this summer and then it became our little thing—every visit to the rehab and the nursing home began with it. I tell her this again today, and she blinks at me. She knows.

She no longer has the ability to swallow and cannot take anything, even juice, by mouth, because she aspirates it. If you cannot swallow and you have put in writing you do not want a G-tube, suddenly the timeframe and the options available in it are much smaller.

So it is a period of difficult decision-making, and we talk about what is going on in front of her. He brain will not allow her to swallow or speak, but it allows her to know what is going on. I’m not sure if that is better or worse, because the things we say are frank.

I kissed her head and told her I will be back tomorrow. “I love you,” I said. She met my eyes and held my gaze. “I know,” she told me without saying a word.

Radio Update

If you want to listen to it, you can find the audio file for the Get Real Girls Interview on the sidebar at the right, conveniently located in the newly streamlined "Select Publications and Publicity" section. I tested the file on a Mac and a PC and it worked fine on both, but let me know if you have trouble with it. A Barenaked Ladies song fills the first few seconds and is the lead-in to my segment.

You can also find the brief feature on me and link to the entire show at 107.1.com.

Specialists, Specialists Everywhere, But for the Little Things, Not a Doc to Spare

The last time I had any sort of primary care doctor was when I was in first grade, up until the pediatrician who referred me as a baby to the ENT and immunology doctors handed me off to them altogether. It appeared I wasn’t exactly an ideal candidate for generalized care. Considering the strep that sent most little kids to the doctor’s office for a quick swab test and some meds ended up spewing from my ears and lodged in my knees, I can’t really argue with his logic.

For most of my childhood and young adulthood, I rotated among specialists for a confounding array of ailments: an asthma/allergy doctor for my lungs (and we all know how well that went); an immunologist for my IGg deficiency disease, an ENT doc for the ever-present (and sometimes life-threatening) infections and surgeries, a rheumatologist for the joint inflammation that began in my lower back at age 10. There was also the orthopedic surgeon who fixed my ankles and diagnosed my knee problems, the specialist who dealt with my enlarged liver and spleen, the urologist, the endocrinologist, and many others.

No wonder my genial suburban pediatrician looked at me and secretly wanted to run in the opposite direction. (And can you just picture what it was like when I was asked to supply copies of my entire medical record? I think upwards of six hospitals had a piece of me.)

It was (and is) a precarious position to be in, and I cannot help but think of the overused analogy of the quarterback: I had lots and lots of team players responsible for different things, but I had no one coordinating all the moving parts.

I still don’t. I have my lung doctor, who is amazing. I actually have to suppress the urge to tell him he’s a rock star when we communicate via e-mail because I do not want to sound like a crazed fan or something. I have a scarily smart rheumatologist who oversees various infusions and inflammations and serves as my de facto primary care doc, but her office is busy and isn’t made to handle acute (but minor) things that aren’t technically related to rheumatology. I still have a handful of other specialists who deal with isolated problems and body systems, and I see them and undergo their suggested tests.

I am not arguing against specialized medicine. I would be foolish to do so. If it weren’t for advanced, sub-specialized care, I never would have received diagnoses for rare respiratory diseases, diagnoses that have changed my life. I depend on the cutting-edge research into ridiculously niche problems my specialists conduct to maintain my quality of life and hopefully change the future outcomes of progressive diseases like mine.

That’s no small order.

But whom do I turn to when I have a nagging headache that persists for weeks? I know (because after 20 surgeries, you just know these things) it isn’t sinus related, and my eye prescription is current. What about the fleeting dizzy spells and intermittent fog that is different from the chronic fatigue or adrenal depletion? Do I start with the ENT doc and move outwards after that? Call up the rheumatologist and see if she’ll take a crack at it?

And what about all the normal things other people get checked for during physicals? I can’t remember the last time I had a physical. I know that many, many important things in my body are monitored regularly, but for all the sophisticated tests and labs I have, are there smaller routine things no one is checking because everyone is looking at something different?

I’ll figure it out, I know. I have a lot of weird issues that necessitate a lot of doctors and I can’t argue against that.

But when niggling things manifest, I’m not sure any of them are appropriate people for me to bother. I’m thinking of taking the plunge and getting a certified primary care doc. I hear they’re something of an endangered species, and I fear people like me are largely responsible for that. But if they’ll have me, I just might like one of them….

Radio Debut...

I'm branching out a bit: To my surprise and pleasure, I was contacted this week by the co-host of Get Real Girls, a popular weekend radio show that airs in Minneapolis on FM107.1 and online at EatBetterAmerica.com. The show is devoted to helping women live their lives with intention and purpose. This weekend, they are focusing on letting go of guilt, and after reading an essay I wrote that appeared on Chronic Babe, they selected me as the Get Real Girl of the Week.

The interview will air this Saturday and can be found on 107.1.com, where they also have a brief feature on me.

I promise I will try not to talk too fast. This is no small promise.

September Lessons

I’ve always loved fall. Some of my reasons are more typical ones: I love the vibrant colors of the leaves, the smell of burning leaves, the cool days where I can wear a sweater and not be too hot or too cold, the abundance of root-vegetable inspired dishes. I love the way the nutmeg and cinnamon-scented candles I use to replace the flowery smells of summer fill my living room, and the way the smoky aroma of grilled meat at football tailgates lingers in the air.

Plus, I am huge dork. Fall has always been synonymous with “Back to School,” and for dorks like me, this is a big event. When I was little, I would start planning my back to school shopping in July—not the clothes, mind you, because I wore a uniform from first grade through high school. No, much to my brothers’ horror, I was focused on such weighty issues as Trapper Keeper versus regular folders, erasable pen versus regular pens, and whether I wanted standard or college-rule lined paper.

And summer reading? I’d have finished it all within the first couple of weeks of summer and would count on the diligent notes I’d taken to refresh my memory in late August.

Obviously the older I got the less critical things like Trapper Keepers and erasable pens became, but fall (and September in particular) continue to have meaning for me, and my reasons for this are less typical.

For starters, the simple act of breathing is easier. True, my temperamental lungs never handle the change in seasons too well, but once we’re firmly entrenched in fall weather and I can say goodbye to the humidity that suffocates me, I am happy. I don’t mind the infections as much if in between them I can actually inhale and exhale without feeling like I will never get enough soupy air.

But beyond pragmatic changes like the weather and going back to school, for as long as I can remember fall has also been synonymous with this thought: “Maybe this year will be my year.” The clean slate I’ve been waiting for, the fresh start every student gets, the year no major calamities occur.

When I was little, “my year” would have looked something like this: No surgeries to accompany almost every holiday and long weekend. No weeks’ long absences. No streams of blood gushing from my ears, ruining my pillowcases and making me hesitant to sleepover friends’ houses. No missing birthday parties and ballet recitals and skating shows because I was too sick. No broken bones and casts with classmates’ signatures, no missing the bus because I needed another nebulizer treatment. No sitting on the sidelines at Field Day every May, watching everyone else run and compete.

In college, “my year” would have looked something like this: No missing weeks of classes each semester due to hospitalizations. No needing my friends to take me to the hospital or visit me during my longer stays. No needing to ask to borrow notes or make up more essays, no needing to conference call the campus newspaper from my hospital bed, oxygen mask and all. No needing to worry my parents with late night calls from the ICU, no getting worse and worse despite the more medication I took. No more feeling like all I did was put my life on hold for illness, and no more feeling like however much I gave up for illness, it would never be enough to make me feel better.

It was a vicious cycle of disappointment I set up for myself. Obviously I never got a year like that, and the more I wished for one and counted on that fresh, clean slate to feel normal, the harder it was when it never happened.

I still get excited for September, and I still get anxious to go back to school. I enjoy my writing students and their work, and I like the structure and routine of semesters. But I no longer count on each September to herald in “my year” and I am much happier because of that.

Don’t get me wrong, it is not that I have become resigned to crises and medical issues, or that I have given up hope that an uncomplicated medical life exists somewhere out there, and I am happy to say that the crises aren’t as pronounced as they used to be. But I’ve stopped setting up expectations that are counterproductive. It’s not about starting over each September with a clean slate or getting back to normal (whatever that normal is); it is about accepting that where I am, disruptions and all, is what is important.

So What About the Healthy One?

I started a line of thought in my most recent post that warrants its own entry: the reason no illness is ever truly invisible is because the people who love us can decipher the many signs and symptoms of illness no one else can. I think it’s important to explore what it’s like for our partners or spouses when a shared illness is invisible, because it isn’t easy. It isn’t fun, or glamorous, or fleeting.

And it certainly isn’t fair.

I mentioned previously that my husband can tell from the single word “hello” if I am having a bad day. The reason he is so attuned to me is because he has spent our entire relationship doing things for me and because of me that no one ever sees:

Performing my chest PT when I need an extra treatment. Racing to hook up my nebulizer when I can’t get it myself. Picking up my prescriptions and accompanying me to doctor appointments when I am too weak to get there on my own. Eating outlandish food that does not contain wheat, poring over recipe books to make my limited diet more interesting. Wiping my forward when I am clammy, holding my hand when I have palpitations. Taking me to the ER and spending nights wide awake next to my hospital bed. Rubbing my back when I cannot stop coughing and knowing when to thrust the spit cup under my mouth. Staying nonplussed when steroids make me moody and unpredictable, carrying things for me and doing all the shopping and housework and lugging when I cannot help him at all. Understanding when we have to cancel long-awaited plans, miss outings and trips, or have to leave early because I am not feeling well.

(Loving me when I am at my lowest, loving me when I cannot recognize myself.)

And these are just the physical things, the actions and reactions precipitated by symptoms and medications and infections. I cannot leave out all the other realities of his life with me: The enormous medical expenses that will never go away. The financial ramifications of the career choices I have made in the interest of my health. The fact that in some ways, we are limited by my illnesses in ways that have nothing to do with stamina, oxygen stats, or infection rates. The fact that no matter what, progressive diseases mean things will never be uncomplicated and there will always be nagging fear.

“You’re sure you know what you’re getting into, right?” I asked him during our engagement, only half-kidding. But the man who was not scared by IV bruises the night we met, who did not mind spending part of our honeymoon scouting out a Walgreens and playing Scrabble while I used my neb, does not seem daunted.

(He’s crazy, I think to myself. And I’m lucky.)

Acquaintances are surprised if they find out I am sick, and friends who do know often do not realize it is in any way life-defining. This is because I look healthy when we split bottles of wine and pore over appetizers; this is because they do not see me on any sort of day other than a good one (and lucky for both of us, there are so many more good days than there used to be). So aside from my immediate family, I do not think many people realize the cost of invisible illness for him, for anyone who chooses to spend their lives with people who will have good days but will never be healthy.

I do not think my husband spends much time thinking about this, or wishing people understood the pressure and responsibility of illness. But from my perspective, I think it would be hard for anyone in his position. Because for as many people there are who ask me how I am doing and how I am feeling, far fewer stop to ask him how he’s doing with all of this, how he’s feeling. I am the patient, so I am afforded the empathy and the queries.

And so in the background stands the person most responsible for all the days when I can safely tuck my illness away underneath invisibility, and no matter what I can hide from outside eyes, it will always be visible to him.

(Even when I wish it wasn’t.)

Individual symptoms and diseases are less important than the fact that whatever is wrong with someone directly influences the people in his or her life. With that in mind, and all the other healthy people involved in relationships with patients of any chronic illness, I want to point out that the Well Spouse Association’s 19th Annual Conference is happening this October. For more information, click here.

Seeing the Scope of Invisible Illness

Today kicks off National Invisible Chronic Illness Awareness Week, making it the perfect time to tackle the realities of living with illnesses that aren’t obvious to the naked eye. This year’s theme is “Living with an Invisible Illness Feels Like a Roller Coaster—Help a Friend Hold On!”

As someone with many different invisible illnesses, I find this theme compelling. On the one hand, it implies that this kind of life can be difficult and that patients need support and understanding—very true. Yet it isn’t as simple as that. The roller coaster metaphor immediately conjures of memories of white-knuckled ascents up steep hills and the rush of relief that follows. These highs and lows, the white-knuckled anxiety and the carefree moments, they are all part of invisible illness.

But You Don’t Look Sick
You knew I was going to start here, didn’t you? That’s because of all the issues tangled up in this discussion, this is the most obvious and probably most relevant. Why even bother having a National Invisible Illness Awareness Week? Because when you’re sick and there are valid reasons why you can’t do something the way you want to or are worn out or need help and you look otherwise healthy, that disconnect can cause big problems.

If I don’t look sick, then I must not be sick. If I don’t look sick, then I shouldn’t need to take the elevator when I am carrying a heavy bag and four flights of stairs seems like it would take way more oxygen than I can get. If I don’t look sick, then I shouldn’t have to re-arrange plans to accommodate chest PT sessions, or quietly leave the dinner table so I can cough without making a scene.

Duh.

Similarly, people with serious illnesses who do not “look” disabled shouldn’t need handicapped parking placards, or people who are young and dress well and wear make-up couldn’t possibly have a life-threatening or life-altering disease because truly sick people are only found in hospital beds, wearing faded johnnies and cracking wan smiles, and they certainly don’t look like normal people. I know enough people with enough invisible illnesses to know that this kind of thinking happens all the time.

This is the frustrating, anger-inducing part of the roller coaster metaphor, the one that quickens my pulse and flushes my face. I’m not asking for or expecting understanding from these people. I don’t really need it, and I’m not expecting miracles here. But there are times when I just want them to keep their preconceived notions of what sick looks like and their judgmental indignation to themselves.

Escape, Sweet Escape
I’ll be honest, there are lots of times when I am glad that whatever is wrong with me is largely undetectable on the outside. Sure, it can be isolating to feel like crap and slog through the day, trying to be “normal” and feeling so far from that. But there is a very real upside to this isolation: Escape.

Remember that rush of relief when the stomach-churning drop is over? That’s what I’m talking about. “Carefree” is not often a word associated with illness, but I’d say “caring much less” is a big part of it.

If no one knows anything is wrong with me, then for a little while, whether it’s at work or out with friends or riding the train, I can suspend reality. Having chronic illnesses is only one part of who I am, but sometimes necessity dictates that it seeps over into the other roles I take on, too. I don’t want to always think about, talk about it, make decisions based on it, or be associated with it.

And luckily, I don’t have to. The public, non-patient persona is really important to me—and, I’d argue, anyone with any type of condition—because, quite simply, it allows me to define myself in so many ways that have nothing to do with illness. Illness is always there, obviously, but it’s in a back-seat role.

And Lastly, the Invisible Made Visible
There’s something else to uncover in this discussion, something that perhaps isn’t as obvious a theme as the first two: To the people who really matter (and the people whose opinions likewise really matter), there is no such thing as “invisible” illness.

My mother can tell just from looking at my eyes (Are they glassy and flat?) if I am having bad day. My husband knows from the tone in my voice from one single word—“hello”—if I am not doing well. Even at a distance, my father can tell from watching me take two steps how I’m feeling. My friends know the subtle difference between the “just me being me” cough and the “hmm, something’s brewing” cough, even if I’m not even coughing all that much or that loudly.

I know how important having that inner sanctum familiarity is. I can see the same signposts in the sick people I am closest to: the slackened gait of exhaustion, the subtle grimace of joint pain, the tempered tone of tiredness. To the people who know us best, there are always telltale signs, ones that no one else would notice. As long as we have people who can see beyond what’s seemingly invisible, we have what counts, and the ride seems so much more manageable.

Medicine and Social Networking: An Inevitable Pairing?

Last week, I read with great interest this post from Hospital Impact about technology, health care, and the Facebook generation. The points raised are compelling ones, namely: Is social networking is a better vehicle to foster community and spread awareness of health care innovations? Does it successfully integrate health care into daily life? Would health care providers benefit from social networking, and would viral marketing benefit practitioners and patients alike?

While I was pondering these questions, Healia.com, a consumer health search engine, launched its first Facebook application, the Healia Health Challenge. I use Facebook (albeit somewhat sparingly). I’ve used Helia. What would it be like to combine the two? Intrigued, I tried it out. (More specifics on the application follow below).

Of course, a whole new set of questions sprang to mind. Does the tech-savvy consumer/patient have emerging needs that depart from what more traditional Web forums, online communities, or list-servs can satisfy? Is this technological shift inevitable?

Between the great post at Hospital Impact and Amy’s query at Diabetes Mine, it’s clear the medblogging community has a lot to say about what it wants from health sites. As a corollary to all of this, I interviewed Jonathan Shaw, a marketing associate at Healia.com, to what he had to say about healthcare and social networking. Here’s some of our discussion:

Q: Let's talk about social networking and healthcare innovation. What made you reach out to Facebook as compared to, say, exclusively health-related online communities?
A: When Facebook opened up its API to developers to build their own applications, we immediately realized we had a great opportunity here. We saw that we could create an application that’s both fun and educational, and can raise awareness about our search engine in a rapidly-growing medium. We do follow the health-related online communities closely, but we haven’t seen this sort of opportunity anywhere else yet – certainly not with the sort of exposure to a wide audience that Facebook provides.


Q: The Facebook application is a health quiz where top-scorers are designated "Chief of Medicine." What factors went into creating this type of quiz? The style and content cover a broad spectrum of health issues but at the same time, they speak to a particular type of healthcare consumer. Does the "Facebook generation" have different needs than other healthcare consumers?
A: We wanted our application to be fun but also stoke young people’s curiosity about health issues. Many of the questions in the quiz were sparked by lunchtime conversations in which we bantered about health-related issues with uncertain facts. One of us had heard that carbonated water is supposed to be bad for you; others hadn’t heard that. Who was right? We used Healia to get to the bottom of these mysteries and we wrote our answers based on what we found. Through this process, we learned about common health myths and included these in some of the questions. From what we’ve heard so far, people are sometimes surprised by what they learn through the Healia Health Challenge.

(Editor’s note: Despite an embarrassing mix-up between HDL and LDL cholesterol and a misstep here or there regarding things like caffeine’s ability to help a hangover, I rocked the Healia Health Challenge. That’s right, you can call me “Chief of Medicine.” It was fun, especially since I am a medical dork and am oddly competitive about objective tests I take by myself.)

Q: Do you have any other plans/developments in store in terms of Facebook and the Healia Health Challenge?
A: We definitely want to keep this application interesting for Facebook users who’ve installed it, so we’re currently working on a new set of questions. This is a fun, creative process and if you’ve got any ideas for questions we should cover, please send them to our Marketing Manager, Tassie DeMoney: tassie@healia.com.


At the end of the day, I’ve proven that I know a lot about topical health care issues and now have an application on my Facebook page that tells people this, allows them to test themselves, and introduces them to a useful online resource. But is this first step the start of a new technological revolution for the health care consumer? You tell me.

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.

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

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?

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!

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.