Wednesday, December 31, 2008

2008's Year in Review and Looking Forward

This time last year I was homebound and pretty sick, and all I could do was think about how glad I was to not be in the hospital. Apparently not much changes, because it is New Year’s Eve and I find myself several days into a battle to avoid being an inpatient—and extremely grateful to be able to type from home.

But to say not much has changed in 2008 would be a big understatement, both personally and publicly. Looking back over this year’s posts and this year’s headlines, I find that perhaps inevitably, there is some overlap.

Of course, 2008 was the year of my first book, and I found myself thinking a lot about writing, language, and the power of narrative medicine. I did lots of things I’ve never done before, like radio interviews and book readings, and some things that were all too familiar (hello, canceling highly anticipated plans due to various plagues…). Now, I’m looking towards the next big project.

In the larger world of health care, health policy and economics, there was the same blend of highs and lows that made their way into my world. Massachusetts made great strides in terms of universal health care (despite some complications), and 2008 was an election year in which health care and the female vote mattered. As exciting as moving in a new direction is, of course it’s also tempered by serious economic woes, job loss, and even everyday expenses are more of a burden.

Whether it’s hope in the future president, hope for a new job or a steady job, hope for health insurance or housing, hope for a family or a diagnosis or simply the hope for more good days than bad, may 2009 be a year where we hold onto the highs and where the lows even out, a year of hope for our futures.

(As a seasonal aside, visit me here for simple tips for a healthy New Year!)

Monday, December 29, 2008

Boston Health Examiner

Since I can't seem to get enough writing about health, I'm excited to start a new gig as the Boston Health Examiner at Check out my first post on eating well, one in a series on healthy New Year's resolutions. Enjoy!

Primary Care and Chronic Illness--The Update

Awhile ago, I wrote about the challenges of primary care when you are a patient with multiple (and rare) diseases…Or, as my friend Lyrehca says, when you are “clinically interesting.” I have specialists for several different body systems and they each provide fantastic care, but I don’t want to bother the lung guy with the GI problems, or the rheumatologist with the allergic reaction.

So, I embarked on a quest to find a primary care physician. I wanted my new doctor to be in the same hospital as all my other doctors, and finding a group that still accepted new patients proved daunting. Life, the book, and work got busier, and I let the search slide a bit. Then this summer I came down with mesenteric adenitis and was shuffled between specialists and eventually sent to the hospital. I came home re-committed to finding a primary care doc, someone who could have fielded that problem, and put my name down for an appointment five months down the road.

Well, that initial appointment recently happened, and it feels good to have someone coordinating all the moving parts of my care. My new doctor and I clicked; I felt comfortable talking with him, and I appreciated that he’d already become familiar with my case and had been in touch with my other doctors. Since they all work in the same system, they all have access to my latest test results and notes, and I’ve never had such efficient, streamlined care. The new doctor noticed some unusual lab results no one else had looked at—because they didn’t fall under their realm—and followed up on them. We made some important decisions about diagnostic tests for other problems, and I feel good about moving forward.

It’s been almost 20 years since I’ve had an official primary care doctor, and I told him I was worried about contacting the appropriate person for certain infections. Those of you with more experience negotiating this balance between primary care and specialists, do you have any feedback?

“With all you’ve been through you know your body best. Just trust your instincts,” he said. Sounds like a plan, indeed.

On a less personal level, I’d also like to circle back to the issue of universal health care in Massachusetts. As I mentioned before, part of the primary care shortage and the several months’ wait many patients find when they try to make an appointment is an unintended consequence of providing insurance to more people…and of course people without prior access to health insurance and preventive care are often most in need of primary care physicians. Anyway, according to this recent post on WBUR’s Commonhealth blog, Massachusetts now has the lowest rate of uninsured citizens in the country. This is wonderful news—now, let’s try and make sure each of those citizens can get an appointment!

Tuesday, December 23, 2008

Season's Greetings...

Well, I've been a delinquent blogger. I have several posts in stages of completion, but I'm having some aspiration issues here at A Chronic Dose (the physical kind, not the ideological) that demand full attention. Expect a real post in a few days but until then, Merry Christmas, Happy Hanukkah, and Season's Greetings to everyone!

Monday, December 15, 2008

Grand Rounds Vol. 5 No. 13

Grand Rounds Vol. 5 No. 13: The Best of 2008

It’s the time of year when the “Best of ” lists start popping up everywhere. As a writer, I pay the most attention to the holiday book lists and that is where I got the inspiration for this edition’s theme. Quality writing is a gift to everyone who reads it, so I challenged the medical blogosphere to send me the best writing of the year--the funniest, most poignant, most controversial, etc. What follows are the Best Posts of 2008, as selected by each of the 49 bloggers who submitted to this week’s Rounds.

(*= Editor’s Choice. Think of these posts as the best of the "Best Of...")

Best of Health Practice
The way doctors, nurses, and other health care professionals interact with patients and with each other, the way our bodies interact with the environment around us, the way the health care system interacts with emerging technology—these are just some of the topics covered in the Health Practice category. There was a lot of wisdom passed around in 2008.

*Kim at Emergiblog offers a post on empathy she is particularly proud of—and once I read it, I could see why. A must-read, indeed.

*Doc Gurley chose “How To Break Bad News,” thinking its message would appeal to new readers. I have to agree, and I’ll add that its content is important for everyone.

*The Happy Hospitalist describes what a real life Code Blue resuscitation is like in “Don't You Dare Touch Me.” When you read it, you’ll understand why.

Canadian Medicine is most proud of this post about the dangers of anonymous blogging. It’s an extremely relevant topic for everyone involved in medical blogging, and a great treatment of it.

Notes of Anesthesioboist discusses Code Indigo. Not sure what that means? Be sure to read this powerful post.

Medicine for the Outdoors considers this post on the environment to be the most important subject matter covered on his blog all year. His explanation of why is thoughtful and detailed.

Other Things Amanzi describes a textbook case that is anything but usual.

Clinical Cases and Images Blog asks, “How Should Hospitals Use Twitter?” It’s a good question, so make sure you catch up on the conversation.

Allergy Notes continues with the theme of Twitter as quite the hot topic in 2008 in the post Allergy and Immunology Journal Club on Twitter.

Dr. Shock ponders if psychiatrists should wear white coats. According to one study, 96% percent of patients preferred their psychiatrist sans white coats. Do you agree?

Sharp Brains sends along “Art Kramer on Why We Need Walking Book Clubs,” where they discuss how emerging brain research areas are going to have a major impact on our lives in the next 5-10 years.

Teen Health 411 suggests a recent post about developmental assets and teens, calling it “the closest thing to a guidebook for conscious parenting I have ever seen.”

Receiving shares an interview with Dr. Lewis Goldfrank, a world-renowned emergency physician and toxicologist who is dedicated to social justice and human rights.

The Angry Medic learns from a patient that really, some wounds never heal.

Neuroanthropology writes about
Our Blessed Lady of the Cerebellum, a compelling story of personal, medical, and political drama.

Dethmama Chronicles offers the story of a daughter's last act of love and respect for her mother in "Joie de Vivre et Madame M.”

Leslie at Getting Closer to Myself explores the emotional impact of chronic illness and questions the concept of “First Do No Harm.”

Lyrehca at Managing the Sweetness Within deals with the best way to treat insulin reactions. She’s a diabetes veteran, so she would know.

Aequanimitas discusses the unique qualities of elite alpinists in “Achieving Impossible Heights.” Check out what it takes for yourself.

ACP Internist tells us that alternative medicine use holds steady at more than 1 in 3 Americans. This post follows up a topic that is occurring more and more frequently in the communication from patient to doctor.

Laika’s MedLibLog describes the difficult concept of randomized controlled trials in an easy to understand manner.

The Fitness Fixer offers innovation in abdominal muscles, saying this post was one that directly quickly stopped the source of chronic back pain for many people who wrongly thought they had to tighten or strengthen abs to stop back pain.

Best of Health Policy
As you know, 2008 was a busy year in the world of health care policy—the recent presidential campaign certainly added more urgency to important conversations about health care reform, health insurance, and other issues surrounding health care delivery.

*Mind, Soul, and Body writes an impassioned response to where the path of blaming patients for their illness will always lead in “Those People.”

*Mike Feehan at InsureBlog thinks many people mix up health care and health insurance—and he’s here to set the record straight. (I love a good semantics discussion…)

David Harlow of HealthBlawg tells us that
ambulance diversions will soon be banned in MA and explains how overcrowding factors into this decision. Be sure to read miss his interesting interview with Alasdair Conn, MD, Chief of Emergency Services at Massachusetts General Hospital.

David E. Williams of Health Business Blog asks an important question to think about as we move forward: Generic Biologics --or Me Too Drugs 2.0?

Duncan Cross has a decisive answer for why health insurance is tied to jobs.

Survive the Journey shares some good ideas on how to address the primary care physician shortage in "Dear Doctor, I Can Help."

Louise at Colorado Health Insurance Insider stirs up some dialogue when writing about the affordability of health insurance.

Best of Health Humor
Even weighty topics warrant a good dose of humor, and I’m pleased to see a little snark, some (not so) subtle sarcasm, and the occasional silly story come through in 2008.

*Barbara K at In Sickness and In Health likes the idea of starting the year with a laugh and offers “A Conversation Overheard in a Waiting Room.” Since I live in the Boston area, I could really relate.

How To Cope With Pain takes a break from more serious topics in chronic management and gives us a
humorous look at invisible illness
courtesy of "I Can Haz Cheezburger" photos.

*The Week is used to medical school rejections, but one in particular came from Drexel many weeks into the academic school year: “As if I was on the edge of my seat thinking they would accept me after classes began!”

At Sutures for a Living we hear what it’s like to have “one of those days” in the post “Mama said there’d be days like this.”

Dr. Val offers some Christmas humor in “The Christmas Miracle.”

Shrink Rap keeps up with the holiday theme, offering an edgy piece about gifts.

Dean Moyer of The Back Pain Blog offers some tips for avoiding injury in
Back Pain and Anger
. And for what it's worth, kicking a fire hydrant isn't one of them.

Covert Rationing Blog sends along
“How To Think About the Obesity Dividend,” saying that “my usual ironic voice was misinterpreted here by more than a few. While it is probably a sign of my own pathology, I always enjoy it when that happens.”

Best of Health Inspiration
Attitude is an important part of living with medical conditions, and the following posts offer insights and experiences that uplift, entertain, or motivate.

*Rosalind Joffe at Working With Chronic Illness thinks fighting illness is the wrong approach. Check out her reasons why.

*Kerri at Six Until Me writes about her wedding day, the best thing that happened to her in 2008. It’s written “with love in mind and with diabetes in mind.”

Jenni at ChronicBabe says she wants to be a turtle, which she calls “the concept of carrying your positive self everywhere with you; the times when things are hardest and you just want to pull your head inside your shell; and the benefit of going slow and steady - pacing yourself.”

Adventures of a Funky Heart! says you can't help but getting "fired up" about all the things that are coming in the Congenital Heart Health field when you sit down and talk with Amy Verstappen, President of the Adult Congenital Heart Association.

Rachel at Rachel’s Diabetes Tales is getting back into the exercise groove a few weeks early. Who needs to wait for New Year’s resolutions?

Chocolate, Music and Hope offers "Hair Today, Gone Tomorrow: Learning to Accept Disability," saying it is “the most meaningful post I have written to me because it really marks how far I have come in learning to accept my disability...”

In “All Souls,” Writing and Healing responds to a patient’s death and learns firsthand how reflective writing can bring clarity, release and a profound gratitude for simply knowing the patient.

Day of the Doc remembers all the veterans in our country and poses a heartfelt and educational discussion of PTSD.

Lastly, Emerald Arts gives us inspiration of the visual persuasion. Check out her post in photos chronicling a day at the beach.

Best of Health Debut
Since 2008 was my debut year as well, I can relate to what it feels like to put yourself out there for the first time. The bloggers who sent the following posts have never submitted to Grand Rounds before, but took the plunge and shared their estimation of 2008’s best posts. Welcome!

Genevieve at Spit Happens has a rare form of cystic fibrosis coupled with bronchiectasis (a girl after my own heart with those diagnoses). In this post on chronic illness and relationships, she discusses the downside of being a passionate fighter—and no, she’s not crazy.

Living in the Midwest knows the low point chronic illnesses can bring a patient to—and wants to confront it directly and honestly.

My Journey from Nurse to Doctorshares what happens when a mentor is anything but in “How Things Change.”

Thank you to everyone who submitted posts and made the Best of 2008 possible. Highlight Health will host next week’s edition.

Thursday, December 11, 2008

It's Always the Season for Books, Part 2

So I’ve talked here about why books make great holiday gifts. To help give you some ideas, Moon Rat has a fantastic, detailed list of “best-ever” titles over at Editorial Ass. You can also consult Salon’s Best of 2008 book list, or the NYT’s 100 notable books of 2008, among many others.

So what’s my contribution to the book-buying suggestions? I thought I’d try out a different approach. My very random, totally un-scientific, un-researched and completely off-the-cuff list of suggested titles is just that—books that immediately come to mind, with no consulting my bedroom bookcases or bestseller lists. It’s neither exhaustive nor exclusive, but maybe that’s a good thing. After all, if these titles are at the front of my mind right now, with 700 pages of student writing to comment on, freelance deadlines, and a respiratory infection, they must be memorable, right?

Nonfiction (memoir and narrative):
The Obvious: Eat, Pray, Love by Elizabeth Gilbert
A Three Dog Life by Abigail Thomas
The Sky Isn’t Visible from Here by Felicia Sullivan
Mountains Beyond Mountains by Tracy Kidder
Friday Night Lights by H.G. Bissinger
In Cold Blood by Truman Capote
Into Thin Air by Jon Krakauer
The Spirit Catches You and You Fall Down by Anne Fadiman
I Remember Running by Darcy Wakefield
All in My Head by Paula Kamen
Marley and Me by John Grogan

(Note: Though a couple of titles cross over, please see my previous post on narrative medicine if you are interested in a more complete list of books about medicine, illness, etc.)

The Obvious: In Defense of Food by Michael Pollan
Animal, Vegetable, Miracle by Barbara Kingsolver
Garlic and Sapphires by Ruth Reichl
The Man Who Ate Everything by Jeffrey Steingarten
Fast Food Nation by Eric Schlosser
Beef: The Untold Story of How Milk, Meat, and Muscle Shaped the World by Andrew Rimas and Evan Fraser (Note: I have only just started this, but the author is local and a friend of mine so it’s on my mind)

Eats, Shoots & Leaves by Lynne Truss
Freakonomics by Steven Levitt

The Obvious: The Interpreter of Maladies by Jhumpa Lahiri
The Emperor’s Childrenby Claire Messud
Runaway by Alice Munro
Case Histories by Kate Atkinson
Water for Elephants by Sara Gruen
The Poisonwood Bible by Barbara Kingsolver
Kissing in Manhattan by David Shickler
The World According to Garp by John Irving
Prep by Curtis Sittenfeld
Namesake by Jhumpa Lahiri
Little Earthquakes by Jennifer Weiner
Lost City Radio by Daniel Alarcón

Someday, I’ll be good and post a more complete list with commentary and all that, but right now a different stack of writing awaits me. Please feel free to throw in your favorite or current reads in the comments section, and remember—books make wonderful gifts!

Tuesday, December 09, 2008

Grand Rounds Vol. 5 No. 13: Call for Submissions

It seems fitting that I started out the semester hosting Grand Rounds and am finishing out the semester with another edition at A Chronic Dose on Tuesday, December 16th.

It's hard not to get thematic during the holiday season, and at first I thought about using "Gifts" as the common thread for submissions. But I'm knee-deep in "Best of 2008" book lists, and it occurred to me that for writers and readers, quality writing truly is a gift. So, please send along what you think is your "best" post of the year...and why. Whether it's your funniest post, the one that was the hardest to write or stirred up the most dialogue, or touched on a topic that really matters to you, etc, I want to see it.

Please send them to by 11 pm on Sunday, Dec. 14th and put "Grand Rounds" in the subject line.

Thanks, and I look forward to reading your entries!

Tuesday, December 02, 2008

It's Always the Season for Books

I hate to shop. When compared to all the other things I could be doing, the thought of spending time wandering around crowded stores seems incredibly inefficient to me, and I don’t usually want the item in question enough to warrant a trip. (Of course I also bring student papers to hair appointments and squeeze my laptop open on the subway, so clearly I have some issues with downtime.)

While my dislike of shopping is year-round, it kicks into high gear near Christmas; my proudest shopping moment of last year’s holiday season was when I realized I got every single gift I needed online, minus one.

I do have one huge exception, though. I love buying books and being in bookstores, and if left un-chaperoned, I could easily spend far too many hours and too much money. My husband fully supports (encourages, even) my book-buying binges, but I like it when we go together because I’m more conscious of that wily little word “moderation.”

I know the economy’s in terrible shape and holiday budgets are much tighter for most people, and I have a solution: Buy books. Seriously. They are affordable, durable, and can be used over and over.

Now, I know I am biased because I recently published my (affordable paperback)book Life Disrupted. But I’m making this plea not as a book author but as a lifelong book lover, someone whose favorite childhood Christmas present was the Little House on the Prairie boxed set of books, and who got a floor-to-ceiling bookcase for a 10th birthday present. I cannot go to sleep at night without reading, if even for 10 minutes, and I cannot leave the house without at least one book tucked into my briefcase.

The only gift I always buy in person for my nieces are books, and my gift to my oldest niece each Christmas is a hardcover book with an inscribed note. My brother told me she makes him read them to her throughout the year.

So buy books this year, and maybe even start a new tradition. What’s more, whenever possible support your local independent bookstores. They are more than simply places that hold shelves of books; between readings, lectures, and other literary events and book clubs, they foster a sense of community in neighborhoods. Like many independent retailers, they need our support and patronage more than ever right now.

For local readers, I just scored several great books on the sale table at Brookline Booksmith, and my two local favorites, Porter Square Books and Newtonville Books (both of which were awesome in supporting this local author with events) have tons of interesting readings and events this December and offer good discounts.

Obviously I believe books are a perfect gift for people of all ages and inclinations, but since this is a blog about illness, I do have to say that for people with chronic illness, books can take on even more significance. They bring the outside world into our homes when we can’t always leave, and they offer escape and entertainment when we need it most. I think part of the reason I was such a big reader at such an early age is because it was the one thing I could always do, no matter how sick I was or how many IVs I had in my arm.

I'm working on my own recommendations, but for now, check out this book editorial from the Boston Globe--it's full of quirky selections for the readers in your life. Happy shopping!

Wednesday, November 26, 2008

Engage with Grace this Thanksgiving

About this time last year, I lost a loved one. Because we knew her preferences for end of life care, she was able to die at home, surrounded by family. It was a beautiful thing. However, many of us don't know how or when to have these important but difficult conversations, which is where the One Slide project from Engage with Grace comes into play. Today, bloggers around the country are participating in a blog rally to spread the message of Engage with Grace and get people talking. Please see the details:

Engage with Grace: The One Slide project

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones know exactly or have a good idea of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They're about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we're asking people to share this One Slide wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven't had.

Here is what we are asking you: Download The One Slide and share it at any opportunity with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to This post was written by Alexandra Drane and the Engage With Grace team)

Tuesday, November 25, 2008

Giving Thanks

I was sandwiched between two people on a crowded subway trolley a couple of weeks ago when I smelled it. Instantly, my stomach tightened with rolls of nausea. I grabbed the silver pole next to me with whitened knuckles. Do not throw up. And in a matter of seconds, I wasn’t an adult on my way to work, I was a little kid on a cold November morning about to have the warm blanket placed over my legs in the operating room.

The woman who sat down next to me smelled just like anesthesia. I don’t know how to describe the smell accurately, but it is somewhat sweet and plastic-y at the same time. It is a very particular smell, and it gags me (obviously). Usually I am more prone to hear songs and associate them with a time or place than I am to associate smells, and I’ve never had a more visceral reaction to a smell than I did that day on the train.

It was fitting that this occurred on a cold, sunny November day. You see, when I was little and needed surgeries to drain infections from my head, ears, sinuses, etc, they tended to cluster around the holidays, the peak infection season for me. Also, we tried to plan surgeries for when I had a day or two off from school anyway so as to build in some extra recovery time. Accordingly, Veteran’s Day and Thanksgiving week were prime candidates, and in some particularly acute circumstances, Christmas Eve day also became a go-to surgery day. The sharpest details from these accumulated late fall surgeries are being asked to count backwards from 10 to one as the anesthesia mask was placed over my face, and the wrenching nausea that gripped me in the recovery room (I’ve since learned to ask for Zofran)—and that particular smell brings me right back to those moments.

So where am I going with the charming tale of anesthesia memories? Well, it’s two days before Thanksgiving and our house is starting to fill with much better smells: cornbread baking, sausage sautéing, cider mulling. These are the smells that should accompany November, and I’m happy to replace the surgery smells of my childhood and the inpatient smells of many lung-related holiday hospitalizations as an adult with them.

And so the traditional Thanksgiving post is tinged with special appreciation for where I am in this moment, and the people and circumstances who are part of that:

My family, who was there for me during all those surgeries and is there for me in so many ways today.

My husband, who is seriously amazing (and fairly obsessed with making Thanksgiving perfect).

My friends, who are funny, smart, caring and patient.

My readers, those who buy the book, show up at readings, or get in touch with me to share their feedback, and those who take the time to read this blog—without you, all this would exist in a vacuum.

My favorite reads and the wonderful writers, scholars, and bloggers who always give me something to think about.

My fabulous physical therapist, who gets up at 5am every day and fights gridlock traffic to show up at my house with a smile and deliver superb chest physical therapy.

My doctors, who actually communicate with each other and aren’t deterred by the lack of easy or obvious answers when it comes to this body.

My job and my husband’s job, because at the end of the day if we both still have them and have health insurance, we are fortunate.

And lastly, the fact that despite their many health problems, everyone I love is healthy enough to sit at the table this year.

Friday, November 21, 2008

The Evolution of a Gluten-free Thanksgiving

This is the week of food posts, no? This is also the first time I’ve had any real interest in the actual meal part of Thanksgiving in years. We’re hosting it, and even before we pick up the turkey and other fresh ingredients next week our pantry and refrigerator are already getting full…and I’m really excited to prepare it all.

Honestly, not being able to eat a lot of traditional holiday dishes has never been a big deal to me. I ate my plain turkey, my peas, and called it a day. I didn’t compare gluten-free stuffing recipes or gluten-free pie ingredients, and I didn’t ask for or expect special dishes. The stuffed mushrooms I always make happen to be gluten-free, and even though I’m now dairy-free and they’re no longer safe for me, I make them anyway—they are a crowd favorite.

From feedback I’ve heard from other celiacs, it seems like the hardest Thanksgiving meal is the first one after diagnosis when you’re still getting used to the gluten-free diet and missing favorite foods. I got diagnosed right before Christmas and spent that Christmas in the hospital, so I didn’t have option of acclimating my condition to holiday traditions—clear liquids are neither festive nor gluten-y. By the time the next Thanksgiving and Christmas rolled around, I was so focused on keeping my lungs stable and my body out of the hospital that what I ate seemed inconsequential. I get the frustration or even anger people may feel when they need to give up certain foods, but for better or worse, that hasn’t been my experience.

Besides, going GF made me feel a lot better, and that trade-off was always worth it.

And in a way, not much has changed. Considering last Thanksgiving my jaw was frozen shut with an infection and I could only have broth through a straw, I’m happy just to be able to chew this year. I’ve always been a lean protein and green vegetables kind of girl, and that remains true on Thanksgiving. I know there are all sorts of approaches in terms of eating gluten-free and it’s just a matter of preference. Mine has always been to focus on what is naturally gluten-free and explore those possibilities. It’s not the only way, but it’s my way, and that’s the spin we’re adding to the traditional family menu this year.

I want my mother’s famous stuffing at our table, just like I want the derby pie my husband loves, the ricotta pie my grandmother makes, and the buttery potatoes my brother considers a deal-breaker. I want everyone to have their favorite things.

But I’ve started to make an effort to have my favorites, too. I don’t miss or resent what I can’t have but I do want to share what I can have, so we’re adding small touches to the meal. We’re making the roasted Brussels sprout hash we both love, and we’re adding cranberries and toasted almonds. We’re making naturally GF cornbread to go along with the rolls. There will be no GF dessert option because I don’t eat dessert, but there will be plenty of coffee and perhaps the port that several of us like to drink.

At the end of the day, what I can or can’t eat is much less important to me than being healthy enough to be at the table and enjoy my family. I said it last year but it’s just as true for me this year—it’s the people at the table who create holiday memories, not the food.

(I do hope they like the roasted Brussels sprouts, though!)

Looking for ways to customize your gluten-free Thanksgiving? I’m not much of a baker so don’t listen to me. Trust Shauna at Gluten-free Girl, who has compiled a list of sure-fire recipes.

Celiacs aren’t the only ones who face challenges in the holiday season—diabetics and people with other conditions that mean dietary restrictions have a lot to juggle, too. There are several people with diabetes in my family and lots of friends with food restrictions, and I know it can be a tricky time for them, too. Check out the holiday sweepstakesover at Share your diabetic holiday tips and strategies and you could win a ton of cool prizes.

Stay tuned for a post that’s less about what we eat and more about the giving thanks part of Thanksgiving…

Tuesday, November 18, 2008

Operation Frontline: Healthy Meals for Less

While we’re on the topic of gluten-free meals and cutting costs, here’s a Boston Globe article I wrote about eating well in a down economy and Share Our Strength’s Operation Frontline, a nutrition education program for low-income families. Check out the article for tips on healthy eating on a budget, but more than that, check out Operation Frontline—it’s a great program and its mission of feeding families well for less is an important one, especially these days.

Need more reading? A fresh edition of Grand Rounds is up at Dr. Deb’s blog.

Sunday, November 16, 2008

Gluten-free Eating on the Cheap

I’ve been working on a project these past couple of weeks that has forced me to pay even more attention to the cost of food during these tight economic times. This article on what a modern depression would look like suggested a possible upswing in eating fast food and starchy, processed food because they are cheaper, and I couldn’t help but think even more about the future of healthy eating.

As a patient with celiac disease, I’ve grown used to the fact that eating gluten-free is expensive. Whether it’s dining out or cooking at home, there’s no way around the fact that many of the cheaper items out there are off-limits.

The trade-off, of course, is that fresh and/or whole foods are healthier, and my meals are higher in fiber, lower in sodium, and much more diverse than they would be were I not gluten- (and dairy) free. While sticking to this lifestyle will never be inexpensive, there are definitely lots of things GF shoppers (or anyone with a limited diet) can do to maintain their diets without breaking the bank. Here are some strategies to keep in mind as budgets shrink and costs increase—none of them are earth-shattering and they certainly aren’t the only ones out there, but they are things I think about and try to practice regularly:

1. Personally, I try to stick to foods that are naturally gluten-free, rather than buying specialty pre-made items (bread, pizza crusts, pasta, etc) that approximate products with gluten and cost more. I’d much rather buy a bulk bag of brown rice or risotto and have that with my stir fry or as a side dish. Same thing with polenta—it’s cheap when you buy it in bulk and is really versatile in terms of spices and mix-ins.
(Note: I’m not much of a bread/baked goods kind of girl, but I know celiac patients get good results with breadmakers, and that it’s cheaper than buying pre-made GF bread).

2. We like to make soups and turkey chili a lot, and buying dried beans and lentils makes a lot of sense if you’re going to use those ingredients often. Certainly store-brand canned beans aren’t too expensive, but they can have more sodium than I’d like and they’re still not cheaper than dried beans. (Just make sure you give them plenty of time to soak. The infamous “crunchy” turkey chili of July 4, 2008 taught me that lesson.)

3. Plan meals around vegetables in season—not only does it make for more creative meals but you’ll spend less. If your recipes call for vegetables not in-season, frozen vegetables are more affordable and have many of the same health benefits as the fresh kind.

4. Make the most of every ingredient you buy and purchase items that can work in several different meals/recipes. For example, we’ll buy a whole chicken when we see it on sale and roast it, using some meat for that night’s meal and setting aside portions to use in soup and on salads later that week. Then we take what’s left and make a huge pot of chicken broth out of it. We use some of it for soups that week, and depending on how much we make, we freeze containers of it to use when we make risotto or polenta and want the depth of flavor broth adds over water. (You can find store-bought broth that is gluten-free but it’s often too salty and I really prefer the taste of homemade broth.)

5. Lastly, it sounds obvious, but pay attention to sales and specials. If you’ve planned out meals with one type of protein and another is one sale, think about substituting. And of course if you see GF specialty items or proteins on sale, stock up on them and keep them in the freezer. Take-out can really add up and is often limited in terms of GF-availability, so give yourself options.

While they are not major changes they can really make a difference for anyone dealing with dietary restrictions. If you’re looking for more ideas, Gluten-free Mommy has a great post on eating gluten-free frugally.

Tuesday, November 11, 2008

Staying Employed When You're Chronically Ill: Interview with Rosalind Joffe

It is my pleasure to host today’s stop on the virtual book tour for Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!. I first got to know co-author Rosalind Joffe when I interviewed her for my own book, and I am excited to be a part of this tour—this book is incredibly informative and should be a go-to resource for anyone trying to navigate staying employed in the face of chronic illness. My interview with Rosalind follows:

1. I know you must get this question a lot, but it’s an important one—why did you ultimately decide to write this book?
RJ: I’d seen in my own life and from my client’s experiences that there is a fair amount of pressure for women with chronic illness, particularly married mothers, to stop working. Since I had found that continuing to work as much as possible when possible was essential to my own health, I wanted to encourage those who view this as I do by arguing against some of the prevalent myths.

2. Why the focus on autoimmune disorders in particular?
RJ: Primarily, it helped us narrow our focus. All of the issues we discuss in the book are relevant to any chronic disease or condition but it was too difficult to try to leave it that broad. It was easier to narrow it to since autoimmune diseases affect women 4 times as often as men and, usually between ages 25 -40 (prime childbearing and career building ages). It’s this confluence of factors that make the situation so problematic for women. Finally, both Joan (my co-author) and I live with auto immune diseases which made it easier to speak from and incorporate our own experiences.

3. What are some of the biggest fears or misconceptions women have about the workplace and chronic illness?
RJ: I think that women and men worry that they’ll be marginalized if others know that they have an illness. The reality is that it can happen regardless of how savvy you are. Women also worry that they cannot live with active chronic illness, have a demanding career and raise a family. Here, too, the reality is that it is very difficult and requires a lot of planning and taking a long view of situation, thinking strategically. Finally, many young women don’t think enough about what it takes to balance family and career when they’re choosing a career and that becomes even more difficult when illness adds into the mix. I suggest thinking carefully about your career options when you get a diagnosis and don’t leave it up to chance. I wish I had been smarter about this early in my career.

4. You write about developing a “warrior spirit.” Can you discuss what that means, and why it is so relevant to the issues of employment and living with chronic illness?
RJ: Actually, I worried about that phrase because I didn’t want the term to be interpreted that women should be more like men. It’s a term I use with my clients because I think that chronic illness can leave you feeling as if life is out of your control and can encourage passivity, particularly when you spend so much time seeing doctors and healthcare providers! I’m not suggesting that you become more combative. Rather, I am suggesting that you think for yourself, you seek options even in the face of opposition and continue to build your ability to be resilient.

5. A lot of my readers are younger adults who are just entering the workforce and trying to carve out a career path with the added burden of chronic illness. What advice would you give to the youngest members of the workplace in terms of things they should consider/look for in a career or workplace environment?
RJ:That’s a great question. First, think long and hard about what you love to do, even if you think it’s not your greatest strength, because that interest and passion will keep you going for the long haul. Consider other aspects of this career and how it fits your values and interests in life. When you think about a career choice that requires additional education or training, try to work in that field in some capacity so you can see what it’s like up close and personal before diving in. Choose a career that allows for as much flexibility as possible so if one job turns out to be a poor fit, there are other places where you can apply your skills. Most importantly, you will always be able to find work if you are good at what you do and bring value, so make it your mission to be the best you can be. You might not be able to work at the pace you would most like all the time or make the salary you dream of, but if you plan strategically, you will be able to continue to do something that has value and feels meaningful.

6. Lastly, you’re a patient yourself, and through the years you’ve faced many of the challenges and setbacks as your readers. What has been your biggest challenge in terms of staying employed? Would you say you’ve reached an ideal balance now?
RJ: That’s tough because there were so many challenges to staying employed. I didn’t think about my career in the long term early enough and I was always trying to make a job fit to my needs. My health waxed and waned (I developed several autoimmune diseases over the past 30 years) so it became increasingly difficult to plan. If I’d had a crystal ball 12 years ago when I had an ileostomy (curing the ulcerative colitis) and then went on MS medication (that slowed down the MS progression dramatically), I probably would have taken a path that would have left me more financially secure. But I’ve been lucky to find work that I really love doing and that I can do. No doubt about it, working for myself at home has made it much easier to keep working and I hope to keep doing this for a very long time.

Thanks so much, Rosalind, for writing this book and answering my questions!

Just a quick reminder, while we’re on the topic of reading, that another great (and entertaining) edition of Grand Rounds is up at Musings of a Distractible Mind. Check it out!

Friday, November 07, 2008

Practicing Professionalism

It’s been a good week. The election is finally over, the results were met with grace and dignity by the losers and optimism by the winners, and hopefully we can all move forward.

(Plus, it’s Friday, and it’s officially been November for a full work week. Normally this would be a non-issue, but I realized last night I haven’t been acutely ill yet this month. I honestly can’t remember a 7-day stretch in November where I have been able to say that. I’m going to ignore the tiny little voice that says “don’t jinx this!” and hope instead this points to a better “plague season” for me.)

But the other reason this has been such a good week is this weird confluence of personal and professional interests that has taken place over the past few days. In my classes we’ve been reading a review article published a couple of years ago in the New England Journal of Medicine about developing professionalism in physicians. Initially, I chose the article because it is a good model for the type of evaluative research writing they are doing right now and while it is certainly useful for that, the content of the article itself has been even more beneficial.

We spent a good portion of class discussing the three concepts deemed necessary for developing professionalism: setting expectations, providing experiences, and evaluating outcomes. I was surprised by how readily they responded to these ideas, commenting on preceptors and colleagues in clinical settings who have been role models for them and instances where they really learned from someone else. And of course, they commented on the moments when the opposite happened, when they received little instruction or explanation from the people charged with assessing and training them.

They are thoughtful and passionate about what they do. They recognize that the best way to learn is by doing, and that sometimes the “doing” doesn’t go smoothly and certain doesn’t come easily. But they also realize that “doing” must be accompanied by knowledge, observation, and input from people with more experience…and that people who have authority also have accountability. Discussions like this remind of the privilege it is to see medicine from the other side. My personal experience as a patient is not something that comes into the classroom, but of course it is something that shapes my perspective.

With a week’s worth of discussions swirling around in my brain I sat down this morning to catch up on the latest doctor-patient column in the NYT’s Well blog. This week’s post, A Positive Approach to Doctors in Training, discusses the rigors of the intern experience and the “culture of fear and negative feedback” that permeates medical education. Could I ask for a more relevant topic to read?

Dr. Chen explores the negative reinforcement so common in the training doctors, and the tendency towards focusing on surviving, rather than improving, as a result. (And of course, the backdrop of last night’s Grey’s Anatomy, where the competition over surgical skills and opportunities took a somewhat macabre twist, added to my interest in this article).

But as noted in the article, research suggests positive reinforcement, long a staple in other professions, may have an important role in developing professionalism in doctors. (Obvious, right? But practice and theory can be far apart…). Of course we need to hear what we’re doing incorrectly so we can avoid making a (potentially serious) mistake again, but as published research, common sense, and several classrooms’ worth of future health care professionals seem to agree, knowing what we’re doing right is incredibly important, too.

All of this got me thinking about the practice of teaching in general. Setting expectations (syllabus, grading criteria, classroom policies, etc) and providing experiences (drafting, workshops, model writing, in-class prompts, etc) are easier to handle than evaluating outcomes (at least for me). I relate to my students’ concerns and experiences and I realize my responsibility in this. It can be an awfully difficult line to draw between giving comments that will help a writer improve (constructive criticism) and giving comments that ultimately deter or de-motivate a writer. I’m always conscious of highlighting moments in the text that work well, but at the same time I don’t want to gloss over moments that aren’t working but have potential.

And I am conscious of their consciousness—just as much as they don’t want pages full of red marks, they don’t want to only hear what they’re doing well, either.

One thing that has really emerged from the week of confluence is the reminder that in any kind of teaching environment, accountability works both ways. I want respect and hard work from my students, but they deserve all that from me too, whether it’s the way I choose to comment on a weak paper or the way I respond to their questions in class. This makes sense in the classroom and of course it makes sense in the hospital, too.

Monday, November 03, 2008

Monday morning links--Election info and the hazards of the diabetic test-taker

If you have chronic illness and read this blog, then you know why I think the health care vote is so important. (Check out my post on the female vote and health care for a quick refresher). Want more information? Check out this video on health care and the next president at Its message is compelling (and it also happens to be star-studded.)

While this next link doesn't concern the election, I read this article this morning and had to link to it. As reported in today's Boston Globe, a young woman with diabetes who was taking the GRE had her insulin pump mistaken for an iPod and was also told she couldn't bring her testing kit and juice into the testing room. Check out the full story for details.

I can relate--it was a cold day in early November just a few years ago when my GRE proctor refused to allow me to bring my inhaler into the exam room with me (I was acutely sick at the time). Not the same situation, I realize, but certainly a similar fear of cheating that permeated the experience and overrode medical concerns.

Anyway, don't miss your chance to cast your vote!

Tuesday, October 28, 2008

Narrative Medicine: Better Doctors, Better Patients?

One of the best classes I’ve ever taught—and by “best” I mean the most interesting, engaging, and rewarding, the class I learned the most from as an instructor—was a writing course for pre-med and health sciences students. It was called “Constructions of Health in Contemporary Literature” and it contained various essays from physicians, writers, and patients about illness, healing, social justice, etc. I was so fortunate to have the chance to read these types of works with a class of future health professionals and see the way they responded to these personal stories and how their readings might inform their identities as they develop their careers.

Of course, physician-writers are hugely popular outside the classroom; the best-selling work of authors like Atul Gawande and Jerome Groopman are probably the most well known examples of this. Narrative medicine is an important topic (now more than ever, I would argue), which is why I was so pleased to come across Dr. Pauline Chen’s article on combining literature and medicine on Tara Parker-Pope’s Well blog in the New York Times.

Among other things, the article discussed how incorporating literature and writing workshops during residency can help doctors view patients with more empathy and compassion—and by extension, it can help them provide better care. It is no easy thing for the well to be able to understand what it feels like to be sick, and no insignificant thing when doctors can do this. As a patient, I am encouraged by programs that incorporate literature and medicine and as a writer I am appreciative of the value others see in studying these works.

Perhaps it is from the dual point of view that I see another strong benefit to narrative medicine beyond fostering more empathy and compassion in doctors: I think it makes us better patients, too. It is useful for me to see the other perspectives, the thoughts and fears and reflections of the people charged with healing (not curing) me. I hope it makes me more understanding and more open-minded, too.

Between writing about illness, living with it, and teaching it for a living, I’ve done my fair share of reading. Here’s a short list of some of the best examples of both narrative medicine and all-around riveting health writing I’ve found:

A Life in Medicine: A Literary Anthology, edited by Dr. Robert Coles and Randy Testa. I’ve used this book as a basis for undergrad and grad classes and have even given it as a gift. It’s a great mix of classic and contemporary pieces.

The Tyranny of the Normal: An Anthology (Literature and Medicine, Vol 2), edited by Carol C. Donley and Sheryl Buckley. An interesting combination of scholarly and personal essays and poetry on illness and disability.

Complications: A Surgeon’s Notes on an Imperfect Science, by Dr. Atul Gawande.

How Doctors Think, by Dr. Jerome Groopman. I loved this book so much and it made me think about so many things that I quoted it in my own book when discussing the doctor-patient relationship.

Mountains Beyond Mountains: The Quest of Paul Farmer, a Man Who Would Cure the World, by Tracy Kidder. I was originally assigned this book in graduate school, where the obsession began. It is one of my favorite books of all time, and one I recommend to students, family, and friends every chance I get.

The Spirit Catches You and You Fall Down, by Anne Fadiman. An utterly engrossing and emotional narrative about one family’s quest to cure their daughter and what happens when Western medicine and other cultural ideals and norms clash. I’ve used excerpts of this in classes and recommend it to everyone.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sontag. Every time I read it and teach it I come away with something new.

Have you enjoyed any of these titles? Have any more to suggest? I am always on the lookout for new material!

Speaking of writing about medicine, another fantastic edition of Grand Rounds is up today at Emergiblog. Check it out!

Tuesday, October 21, 2008

Politics, Sports…and Chronic Illness?

I try to stay on point in my writing on this blog, exploring universal issues of living with chronic illness and discussing new research, policy, or insights from other writers and bloggers. But sometimes, personal interests and public issues intersect, and there’s been a lot of that happening lately.

I don’t usually stray into political leanings, but when it’s an election year and presidential health care policies have the potential to impact so many lives, how can I not write about the importance of the female vote when it comes to health care?

Similarly, I don’t usually write about sports. Now, I’m by no means an athlete—remember, I’ve broken fingers typing before, so you can imagine what an awesome combination me and a basketball court made—but I grew up with two older brothers so sports have been part of my life for as long as I can remember. I mean, I went to hockey, baseball, and football games before I was old enough for nursery school.

Plus, when you live in Boston, you can’t escape fan fever. Clearly Sunday’s game was a tough one for Red Sox nation, (though the Monday night football with the Patriots cheered us up somewhat) and the series with the Tampa Bay Rays was an emotional rollercoaster.

Why bring up a painful loss? Because while rooting for my team, I had the chance to watch Rocco Baldelli hit for the Rays. This spring, after a lot of tests and some tough symptoms to piece together, Baldelli was diagnosed with mitochondrial disease, which makes it harder for his cells to recover from even minimal exertion and can cause excessive fatigue.

Since Life Disrupted published this summer, I’ve heard from many patients and learned about many conditions I didn’t know much about, including mitochondrial disease. Despite our vast differences in symptoms and body systems affected, I could relate to a lot of what I learned, especially regarding the difficulty in diagnosing it and the fact that since it often manifests in children, it’s even harder to identify in adults.

(I had immediate flashbacks to doing homework for grad school while waiting in my pediatric specialist’s office, flanked by toddlers with croupy coughs and stacks of Highlights magazine.)

So at first, I was interested to see Baldelli because anytime a rare disease can get national exposure and awareness like that, it’s wonderful—good for general knowledge and education and hopefully, it’s also good for fundraising and research goals too.

But on a deeper level, watching Rocco’s at-bats reminded me of so many things I normally talk about on this blog: adjusting to new symptoms, negotiating setbacks, and balancing professional ambition with personal health needs. So many of us have had to be creative about our employment situation, from finding ways to work from home to switching jobs so we’re in a more flexible corporate culture. We seek ways to be successful and to contribute even when our bodies don’t work the way we want or need them to work.

Now think about Rocco’s situation, and just how much success and positive contribution depends on athleticism and peak physical condition. And think about trying to compete at his level when his body can’t do the things it used to do, the things he needs it to do. Talk about an adjustment.

In what I am sure will be an ongoing process with many revisions, Baldelli and the Rays are figuring out how to keep him in the game without exacerbating his condition. He doesn’t play in every game, and the time to rest and recover appears to be working since he had no problem knocking out some hits in a clutch position.

I’m glad to see that his diagnosis didn’t automatically mean retirement for Baldelli, and glad to see the Rays are working with him. After all, if there’s room for chronic illness in professional baseball, there’s some hope for everyone else trying to balance work and illness too.

In other news, a new edition of Grand Rounds is up at Pallimed—check it out!

Tuesday, October 14, 2008

Women, Health Care, and the Presidential Election: Why Our Vote Matters

In an election where economic woes dominate the conversation and health care platforms are discussed in terms of polarity rather than specifics, it is easy to see how the importance of the female vote when it comes to matters of health is undervalued.

But it shouldn’t be. After all, women make two-thirds of health care decisions and are consistently health care voters. They also constitute a key swing vote—60 percent of undecided voters are women.

In advance of the upcoming election and on the eve of the next presidential debate, the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.

The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues.

Candidates, are you listening?

What’s more, the target voter, the independent female voter (I count myself in this population), is especially focused on health care—65 percent of female voters say it is the major or one of the major issues in the presidential election.

While I found all of the results interesting, as a young woman, an independent voter, and a patient with multiple chronic diseases, some of the ones highlighted in today’s press conference call were especially resonant. Not only did 83 percent of voters express familiarity with chronic disease, indicating a marked increase in awareness of chronic disease, but when given a long list of items on a health care agenda, treating and preventing chronic disease is at the top of this list. That means chronic disease factors more prominently than such hot button issues as electronic medical records or medical malpractice.

Policy makers, are you listening?

As I know all too well, managing health is a costly endeavor. These days I flirt with postponing appointments and tests to save money, and spend more time paying and filing medical bills than I do any other kind. The fear of losing existing health insurance and the rising cost of health care that is the number one issue for me in this election—indeed the number one issue in most of my personal and household decisions—is also an especially intense concern among younger female voters polled(defined as women under 50).

So I can claim solidarity with these likely voters on so many levels: chronic disease is the dominant issue in health care (remember, 130 million Americans have at least one chronic condition and it costs us $1.1 trillion annually in lost productivity); like most likely voters I am insured but not confident in my coverage; and like 92 percent of voters, I believe that early diagnosis, education, and prevention of chronic disease will make a difference.

Despite the recent crisis on Wall Street, increasing energy prices, and so many other strains, many voters polled supported increasing access to health insurance to all Americans even if it meant raising taxes, even if those dreaded words “federal government” were involved. Since access to insurance means access to education and prevention, that says a lot about our priorities.

Health care reformers, are you listening?

Most voters surveyed didn’t think health care is enough of an issue in the presidential campaign. I agree, and like so many of them, I see this election as a real opportunity to address it.

For what it’s worth, being a younger chronically ill patient who cannot afford to lose my health insurance, someone who is in no way a desirable candidate for insurers, means Barack Obama’s health care platform is more appealing to me. In short, the mix of existing private insurance and expanded government programs for those without access is a much better position for me than the free market would be. Check out their platforms and make your own informed personal decision.

More than anything else, timing is critical here. The female voter matters so much in this election, and chronic disease is what matters most to this important demographic when it comes to health care. It’s time to make our vote count, and it’s time for our leaders to demonstrate that when it comes to chronic disease and prevention, they are listening.

Wednesday, October 08, 2008

Language and the Patient Experience: The Follow Up

I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!

Wednesday, October 01, 2008

The "Other" Crisis

Like many of you, I’ve spent the past couple weeks scanning news sites and listening to the television and radio, bracing myself for the next business collapse. Like many of you, my stomach churns when I think of the hit we took on Monday when the Dow dropped a staggering amount.

When I first heard about the proposed $700 billion bailout, my reaction was along the lines of, “Where’s the urgency and where’s the money for health care?”

How about you?

Against the backdrop of recent months where, despite paying a lot for health insurance, the bills are piling up while the range of services covered has steadily decreased and the thought of cutting back on tests and medicines to save money is fleeting yet tantalizing, this juxtaposition was—and is—particularly compelling.

While the financial crisis looms large and spans so many industries, livelihoods, retirement plans, and households, we’re already in the midst of what is arguably an even larger crisis, one of healthcare and chronic disease. And, as former Secretary of Health and Human Services Tommy Thompson and Dr. Kenneth Thorpe of the Partnership to Fight Chronic Disease discussed in a press conference call I participated in yesterday, it’s a crisis that threatens billions of taxpayer dollars—not to mention our health and quality of life.

Just as I can relate to the ensuing credit crunch and the aftermath of the market’s volatility because I own a house and a car and have retirement accounts tied up in stocks, I can clearly relate to this crisis. In my own circumstances I’ve seen how much more effective and economical preventative care (chest PT, for example) is, and access to quality health insurance is the most significant financial and lifestyle issue in our household.

A healthy population and healthy workforce equal more productivity and a better economy. Better health and wellness (though I could write an entire post on what exactly “wellness” means) are achieved through prevention and disease education. While this should be obvious and should be reflected in health policy, as most of us 130 million patients with chronic disease know too well, this isn’t often the case.

Just to give some context, consider some of the chronic disease statistics Thompson and Dr. Thorpe mention and ones that appear often in this discussion:

--Treatment of chronic illness accounts for over 75 percent of the more than $2.2 trillion the nation spends annually on health

--Treatment of the seven most common chronic diseases, coupled with productivity losses, cost the U.S. economy more than $1 trillion dollars annually

--Health care costs for people with a chronic condition average $6,032 annually - five times higher than for those without such a condition

And of course, these are just some of the numbers. We can’t forget about the millions who are uninsured, the many, many patients with inadequate health insurance, and the economic, physical, and emotional toll chronic disease takes on caregivers and family members.

But as we’re beginning to see in pockets, wellness and prevention programs do work—they improve health outcomes and disease progression and cut down on consumer and employer spending.

So while we can’t avoid Wall Street woes, we also can’t lose sight of the fact that this is an economic situation that’s been building for decades. One of the most interesting questions posed yesterday in the conference had to do with when we would see a “$700 billion moment” in terms of health care. News flash: millions of people are already living those moments already (and have for a long time), and millions of people can speak to the urgency of the situation.

The good news is that despite their vast differences (more on that later, I promise!), both presidential candidates’ platforms address chronic illness and prevention and wellness. Maybe this election will be the time when all the “billion dollar moments” and the urgency so many of us feel will translate into results…and like this current financial debacle, it will have to happen across party lines.

Switching gears, I want to point out that September’s Pain-Blog Carnival is up at How To Cope With Pain. Check it out, and remember that new contributors are always welcome!

Tuesday, September 30, 2008

Tuesday Reading

Need a distraction from the financial chaos? Grand Rounds is up at Monash Medical Student. This week's theme is "Medicine and War."

In other places around the Internet...

Finding the right doctor. Believing knowledge is power. Do these and similar topics, like what it means to be "healthy," sound familiar? I talk a lot about them here, so I was thrilled to see today's NYT's Well Blog and the Science Times, where "Decoding Your Health" compiles a series of articles and essays on these very issues. Definitely worth a read!

More on language, medicine, and the words we choose to follow...

Tuesday, September 23, 2008

A Question of Re-Vision

This week, as I am buried in essay drafts and other deadlines, I can’t help but think of the little speech I gave my students about the drafting and revising process.

“You’re not expected to simply revise typos and neaten up sentence structure,” I told them. “I want you to be willing to re-vision your papers and the content of your argument.”

Re-vision, not revise.

Build on possibilities, not problems.

Every September I latch on to the idea of a fresh start, the same desire for a new beginning (“this year will finally be my year”) that has escaped me since childhood. Usually, I’m so focused on the prospect of a calamity-free year that by the beginning of August I am ready for fall.

This year, a summer filled with the usual infection-y mess and an assortment of unusual new medical issues left me burnt out with appointments and tests, sick of spending money on chronic health issues, and physically and emotionally drained by August’s end—just when I should be refreshed and energized for a new academic year.

So that’s how I started the semester, apprehensive and longing for the summer that wasn’t, and supremely doubtful a clean September slate was in my future.

I can’t change (or revise, as it were) the blur of symptoms that was most of my summer, nor can I make the answers that explain the symptoms come any easier, but I can re-vision my situation.

And that’s what I’ve started doing. I am less concerned with immediate answers than I am with accomplishing necessary tasks for each day. I’m enjoying a new schedule and a new routine and even though I’m juggling several different projects, I am happier when in constant motion. I’m prioritizing my many doctor appointments so the most essential ones get my time and energy (and, more importantly, don’t draw out my resentment). I’m open to the idea of a fresh start, but I’m realizing I don’t need one to keep moving forward.

It’s similar to the idea of keeping an open mind when dealing with doctors I wrote about recently, as well as the importance of changing the chronic routine when it comes to wellness and nutrition.

But this September, I’m not just thinking about doctor-patient dynamics or diversifying our whole foods repertoire. I’m talking about something more fundamental: re-visioning the possibility of, well, possibilities.

And with that, my August angst seems like such a long time ago.

Wednesday, September 17, 2008

Life Disrupted Reading Event on Thursday!

Just a quick reminder to local readers that Rosalind Joffe and I will be reading and doing Q&A at Newtonville Books this Thursday, September 18 at 7pm. Hope to see you there!

Tuesday, September 16, 2008

The Words We Use: Language and the Patient Experience

So ever since my post for Invisible Illness Week last week, I’ve been thinking a lot about words. Not just any words, but the words involved in the naming, labeling, understanding, and defining of the patient experience:

Illness. Disease. Condition.

When I was first diagnosed with PCD a few years ago, in some ways my world was now divided into a “before” and “after”—for someone who has been sick since birth, this was certainly a novelty. The disease name took all my symptoms, surgeries, and various other complications and wrapped them up into a neat package. As I wrote in Life Disrupted, for the first time, my disease label actually reflected my experiences.

This didn’t mean my physical symptoms were any different after I had a label for them, but they made more sense. I know for patients who have struggled with diagnosis for years, finally having a name for their symptoms can be incredibly validating. It also confers membership in a community of patients with the same symptoms and struggles, which, given the isolating nature of some chronic illnesses, is important.

My new label also meant a huge difference in my quality of life and treatments. After all, if you know what it wrong, you can then learn what you can do to help treat it and perhaps even prevent progression.

It’s not a conscious decision, but I’ve never used the term “chronic disease” when speaking about health situations. I’ve always said I have chronic illnesses. Again, this was never a deliberate choice of words, but in David B Morris’s >Illness and Culture in the Postmodern Age, the author makes a distinction I’ve found really interesting, and related to this: disease is the stuff of doctors, researchers, and objective data and test results, while illness reflects the subjective experience of the patient who lives with symptoms.

This distinction also makes a lot of sense to me. While I think of PCD as a disease, something with a specified symptoms and diagnostic criteria, I think of my experience with PDC (and bronchiectasis, etc) as something entirely different. The disease is a definition or explanation, something removed from my identity as many things, one of which happens to include the word “patient.”

On the one hand, I think this use of the term “illness” can be productive, because it introduces the person into the scientific classification of symptoms, and it inevitably factors in the many aspects our lives impacted by our health—family roles, employment roles, etc. But I know there are patients who consciously choose to say they have a “chronic condition” over the term “chronic illness,” and I find that equally interesting. Is it because “illness” conveys something weak or something permanent, while the more neutral term “condition” connotes something temporary and just that, neutral?

And of course, if we’re going to parse out the semantic of illness and disease further, there’s the word “chronic” itself. As researchers and patients alike have pointed out, there certainly aren’t a lot of positive implications associated with the word “chronic.” Think about it—people don’t say they’re chronically happy, or chronically hopeful, or chronically joyful. They just areBut you do hear things like “chronically depressed” or “chronically unemployed,” etc.

But taken at its fundamental definition, the word “chronic” absolutely fits in with living with things that are treatable, not curable. They will always be there, but some periods they will flare or be more pronounced. In my case, there will never be a day I don’t have PCD (or any of my other problems) but that doesn’t mean they’re pronounced or problematic all of the time. It’s the intermittent nature that makes the term applicable. (Granted, progressive diseases mean that ratio of pronounced versus negligible changes, but still.)

Anyway, what I’m interested the most in all of this are your thoughts. Do you use disease, illness, and condition interchangeably, or do you have a preference? If so, why?

Wednesday, September 10, 2008

Virtual Conference for Invisible Illness Week

Just a quick reminder that as part of Invisible Illness Week I will be holding a virtual conference on Blog Talk Radio on Friday, September 12 at 3pm Pacific time. The topic is "Friendship, Dating and Marriage: Can You Keep It All Together When You're Young and Chronically Ill?"

Directions for how to listen to the presentation online and how to call in and ask questions can be found right here. I hope many of you will call in and make this conversation more dynamic!!

Lastly, because I can't just leave you without any good reading material, check out this Boston Globe article on a new study that shows numbers dwindling for primary care doctors. One of the major reasons cited? The strain of chronic disease patients.

Tuesday, September 09, 2008

The Invisible Illness Week Post: What’s in a Word?

I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)

After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.

Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”

This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.

(And yet I assume they are noticing or caring, so really, whose problem is it?)

I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?

But there’s more this invisible illness phenomenon, something I touched on in last year’s post on Seeing the Scope of Invisible Illness--the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.

I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.”

(And yet I am assuming they are noticing or caring, so really, whose problem is it?)

It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.

So in the end, parsing out the implications of invisible illness leads me to another, equally powerful word:


It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.
Powered by blogger. Customized by PinkDezine.