I figured if I am going to write about the state of “organized chaos” in which I’m trying to just make things work, I should provide some details.

Behold:

See that line of writing at the top of the wipe board? It really does say “There is nothing as clarifying as a deadline,” and I really do find myself looking up at it, particularly during those very late nights or absurdly early mornings when the clock and my physical capacity to finish the job are engaged in head to head combat.

The Stickies application on Macs? I would be lost without their color-coded power to organize my day, my thoughts, my lesson plans, and my research questions.

And yes, we have bookshelves. Bedrooms and home offices and even whole closets full of bookshelves, but after my marathon summer of research, we need more. Plus, I like to have my files and sources close at hand when I’m writing.

Anyway, looking at my slightly embarrassing stack of books reminded me of a post I wrote on narrative medicine. Plus, we just happened to talk about Jerome Groopman and Atul Gawande in one my classes today, and it occurred to me I haven’t updated my list of recommended titles in a long time.

Not all of these neatly fit the narrative medicine bill, but they are all about the human experience of illness in some way or another, and all are fascinating:

Carl Elliott’s Better Than Well: American Medicine Meets the American Dream: a really interesting philosophical look at not just cosmetic surgery but the whole idea of the self we present to society and the society that passes judgment on the physical self.

Roy Porter’s Blood and Guts: A Short History of Medicine: I love everything I’ve read by Roy Porter, including his 800-page The Greatest Benefit to Mankind: A Medical History of Humanity. This slim volume packs a ton of information on medicine throughout the ages in a compelling, easily digested way.

David Rothman’s Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making: So this one is a bit more dense and scholarly than others, but it is a great read. For me, it helped me contextualize post-World War II medicine and the development of modern clinical trials, research, and patient rights. I have a much better grasp of current ethical situations and challenges now that I have historical context.

Dorothy Wall’s Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome: Wall does a skillful job blending personal experience and anecdotal reflection on living with Chronic Fatigue Syndrome with extensive research and interviews on the political and scientific controversies around naming, diagnosing, and managing the condition.

I’m always interested in new titles, so feel free to add your own suggestions to this list.

I wanted to do this update yesterday but am in the middle of a prolonged (epic) technology fail so things have been moving a bit slowly. Anyway, as you can see from the picture above (I am the second to last person on the right; you can just see my head) there was a good group of us at the Clinton blogger event. The conversation included many topics, from health care and clean energy to digital literacy and human rights. While I focused on health care and the specific threads most relevant to the chronic disease population, there are many other compelling perspectives on the issues.

For some other summaries and analysis of the event, check out some of the posts on Think Progress, Lawyers, Guns and Money, Feministing, and The Daily Kos.

It was a great mix of bloggers and backgrounds, and I feel fortunate to have met such dynamic writers and thinkers in person. (And of course, I’m still sort of pinching myself that I sat next to President Clinton. Couldn’t help making the Georgetown connection with him—Hoya Saxa!)

A preview of an upcoming event-related post: Applying thoughts on race and respect to the health care world…

Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness.

So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer In Your 20s and 30s, I was excited to see someone else focusing in on the younger adult population. And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted emerged.

“But you’re too young for this!”

How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

On dating, one young woman said, “When I was first diagnosed, I wondered if guys would be disgusted knowing there’s a tumor inside of me. I felt tainted. Of course, I didn’t want a guy to go away when he found out I had cancer, but I felt like it would be natural if he did. Who signs up for that?” (47)

Through these patients, we see examples of people who remained despite what they did not sign up for, and relationships that could not stand the strain. Rosenthal’s own ultimate love story gives solid context—it inspires yet does not overwhelm.

On the idea of surviving, a male patient said, “Once you’ve had cancer, people like to think of you as a superhero, like Lance Armstrong, but I’m no Lance Armstrong. I don’t go for that image. Cancer recovery has become so romanticized, as if this one event suddenly made me a whole different person. I don’t think that’s the case.”

Of course, these are just snippets of the many conversations about family, marriage, death, health care, and many other topics that fill the book. Each story is as compelling as it is unique, yet Rosenthal’s voice carries the book. Upon receiving her diagnosis of thyroid cancer she writes,

“My first thought was the opposite of ‘Why me?’ Why not me? Why a fifty-five-year-old truck driver, a nine-year-old in a pediatric unit, or my seventy-seven-year-old grandmother? Of course, me. Why the hell not me? This life is breakable, and I’m no more immune to pain and suffering than the next person.” (3)

Perhaps it is this attitude that I appreciate the most, one that is devoid of self-pity, one that seeks to bring truth to the reality of so many patients for whom the word “survivor” is a loaded term, who do not couch suffering or pain or fear in palatable ways when sometimes they aren’t meant to be palatable.

That isn’t to say the stories aren’t encouraging, insightful, or ultimately inspiring—they are, because they are real. They are gritty, honest, often funny, and more than anything else, they represent the individuality of the patient experience. This is something Rosenthal is keenly aware of, and her awareness—respect, really—of this individuality allows the diverse reactions and adaptations to living with cancer to co-exist so well.

Despite the differences in diseases and outcomes, I found so many interesting parallels between these patients the ones I know from writing about and living with chronic illness. Of course, I’ll say the obvious: if you’re a young adult cancer patient or know someone who is, you will benefit from this book. But if you or someone you know is trying to hang on to the identity you had before life-changing illness entered the picture, you too will find much of this material resonates.

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!

I know I just gave you a ton of books to think about, but here’s some Friday reading I had to pass along. As reported in the Boston Globe, New research from JAMA suggests a genetic link exists between celiac diseases and type 1 diabetes

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 www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

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.

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!

Not the most uplifting title, is it?

They’re not my favorite words, either. But they are not mine. While I’m often amused by the search terms that bring people to my site, the phrases that pop up the most aren’t wacky or laughable; they’re sobering:

“Chronic illness and divorce.”

Or some combination of the words “spouse” “illness” “sick” “want to leave” “can I leave” and “marriage.”

See what I mean? Fairly sobering…and yet not unexpected, either.

(But another combination of words comes to mind: unconditional love.)

As I wrote in an older post, it isn’t easy being the healthy one in a marriage with chronic illness, and it obviously isn’t easy being the sick one, either. I won’t repeat what I wrote in that post, but no one likes needing to be that vulnerable, and constantly being a caregiver for a spouse can be draining on so many levels.

And, as someone I interviewed in Life Disrupted pointed out, the literature out there on younger couples dealing with chronic illness is scarce. While there are many universal challenges of chronic illness and marriage, being young has its own unique ones.

Why do I mention all of this?

It’s been on my mind lately because next week is Invisible Illness Week, and nowhere are the complications of invisible illness more apparent than in personal relationships, particularly romantic ones. After all, this is the time when life is supposed to be coming together, not the time when your body feels like it’s falling apart. As part of Invisible Illness Week I’m speaking at a virtual conference about friendship, dating, and marriage when you’re young and chronically ill. It’s on Friday, Sept. 12 at 3pm Pacific Time, and I hope many of you will attend!

(Because, you know, the Q&A portion will be a lot more interesting if there are questions!)

I’ll also be blogging for Invisible Illness Week this coming week, so stay tuned.

Grand Rounds Vol. 4 No. 50: Getting Some Education

Welcome to this week’s Grand Rounds. As I revised syllabi and edited assignments for the upcoming semester, I couldn’t help but think that an Education theme was appropriate for a post-Labor Day edition. Whether you’re heading back to a classroom, an office, or a hospital today, hopefully this selection of posts will resonate with you.

(An asterisk* denotes posts that are especially well-written, especially in line with the theme, or both. Consider them at the head of the class.)

I. I’m overly interested in language, writing, and semantics, so I was excited to read this first group of posts, Language: Learning What’s in a Word:

*To ask, or to pimp? Doc Gurley exposes the truth about pimping medical students, a particularly pervasive (and destructive) form of “teaching” in medical education that can have a lasting impact on doctor-patient relationships – sometimes without either party realizing it. Commit her definition to memory—while there won’t be a quiz, you just may need it sometime.

At the Dragonfly Initiative, we learn about the difference between what doctors write and what they mean in their letters and charts. Here’s to fluency in a foreign language!

Doctors spend a large portion of their training figuring out what to call themselves. But as Signout learned from a family who calls their favorite doctor by his first name, the title that comes with medical education isn’t as important as the education itself.

David Williams at Health Business Blog knows good writing (and reporting) when he sees it. Read his critique of a recent Wall Street Journal article on stents.

II. A lot of what we learn comes from on-the-job-experience, as we see in this next group of posts, Patient Education: Insights from the Inside Track:

Reasonably Well enrolled in the “school of whatever works” to find strategies and some measure of success in dealing with chronic illness. Struggling to adjust to life with illness? This school has an open enrollment policy, people.

Waiting room woes? Pieces of Me shares some lessons learned about pacing and patience.

*How do you stay together when things start to fall apart? Over at In Sickness and In Health, couples dealing with chronic pain can learn to find each other when the shadows begin to gather. An essential read for anyone navigating a chronic illness in a relationship.

Multiple allergies making you anxious? Poked & Prodded offers a post on how to parent a child with severe food allergies: prepare, educate, and pray. A great read for families getting ready for school.

Can you recognize the signs of anaphylaxis? Luckily, Captain Atopic at Degranulated could when it was happening to him. Read Tales of Anaphylaxis, Part 1: My story to see what happens when a medical student is the one with the symptoms.

Fight for your site! Kerri at Six Until Me learns that when it comes to her diabetes blood sugar trends, it’s worth it to shove her stubbornness aside and try something new.

At Diabetes Mine, Amy Tenderich has some thoughts on conflicts of interest. Required reading for diabetics, and just as important for everyone else.

III. In this next grouping, Medical Education: Learning from the Experts, we learn a lot about physical and emotional health, and we also see that in many situations with doctors and patients, learning and teaching extend both ways:

*How do you know if medical school is the right choice? In another great submission this week, Signout ponders this question, and offers valuable insights for all of us wondering what we’re doing, and why. (This blog wins the overachiever award for the week!)

*Teen Health 411 tells us not just why education is so important, but what we can all do to encourage it. A must-read as teens head back to school.

With Hurricane Gustav leaving a weary Gulf Coast behind it, there’s no more pressing time to look at lessons learned from the debacle of Hurricane Katrina. EverythingHealth offers insights from the front line.

At InsureBlog, Henry Stern looks beyond the hype about government-run health care systems and learns that cancer and cardiac patients actually do better here.

Does he really eat that much? The Fitness Fixer separates truth from fiction in a post about Olympic calories for Michael Phelps and everyone else.

Inspired by Olympic greatness? Healthline Connects was, and compiled some great Olympic tips everyone can use for better physical fitness.

New school year, new lessons. Vitum Medicinus is a medical student who learns by doing—and by making some mistakes along the way.

Has the summer season been tough on your feet? Start autumn off right by visiting Medicine for the Outdoors, where management of foot blisters is discussed.

Dean Moyer of The Back Pain Blog shares a post entitled Neck Pain Goes Back to Class. In it, he reviews the latest news coming out of University College London where researchers have discovered proof that heat blocks pain on the molecular level.

Who’s behind that mask? At Medical Jokes, Cartoons, Videos, a case of mistaken identity in the delivery room has a lighter side.

Time to retire the chainsaw? At Reflections in a Head Mirror, we find a humorous review of rules for a pacemaker.

IV. Education doesn’t exist in the vacuum of a classroom, hospital, or doctor’s office, as we see in this last grouping of posts, The School of Life: Musings and Miscellany:

Jazzing up your lectures: As any student can attest to, information is only as good as the presentation that delivers it. Not Totally Rad uses tips from jazz legends to explore how to give more effective talks.

Think you know how your doctor lives? The Happy Hospitalist looks at doctors and their cars, and reminds us of the value of appreciating what we have.

A lot has been written about the supposed “math gap” between males and females. But is there more to it? At Neuroanthropology, another take on what some pundits have called “fundamental differences” is proposed: differences in stress responses.

As The Cockroach Catcher learns, sometimes it’s hard to separate religion and medicine.

Don’t lose your knowledge! Your computer holds so much information, which is why Tech Medicine offers some bulletproof backup strategies so you don’t lose everything you’ve collected.

And with that, this week’s exploration of education in its many forms comes to an end. Hope you’ve learned something!

Many thanks to Colin Son and Dr. Val Jones for their ongoing stewardship, and of course, thanks to all of you who submitted posts. Be sure to stop by Apple Quack, host of next week’s Grand Rounds.