A Chronic Dose | A blog about chronic illness, healthcare, and writing.

An Issue of Scope

2009-07-09T13:59:00.000-07:00

It’s been a more eventful few weeks than normal, what with last-minute
trips to New York, visiting old haunts in Dublin, dealing with epic technology fails, and the assorted messiness and unpredictability of daily life.

Still, no matter how wonderful or frustrating these distractions are, they haven’t supplanted the main thing looming in my mind right now:

I’m having a bit of scope issue these days (and yes, here’s where the “writing” part of the writing blog comes in). For a huge project I’m working on, I’m asking a lot of questions I don’t know the answers to yet, questions I am not even sure have resolute answers…which is of course a great thing. After all, questions with known answers aren’t exactly intellectually stimulating.

However, the flipside to being really interested in something and asking lots of questions means that as soon as you locate research and information and begin to understand something, you realize how much more you need to know. And then when you find that next piece of the story, yet more doors open. It’s an exhilarating, exhausting cycle. I’ve gathered thousands of pages of journal articles, newspaper/magazine articles, essays, and statistics. I’ve read and annotated dozens of books, and am in the middle of several rounds of interviews with people all of all persuasions—patients, doctors, researchers, activists, policymakers, etc.

I can sit at my desk and quite literally be surrounded by mounds of resources, fully organized and categorized, and still not know exactly what I am doing. I know this is part of the process, I know this is how it should be, but sometimes I am overwhelmed by the sheer amount of information I have. Some of the research articles or carefully annotated passages from books I know I won’t end up using, some of it I know is still out there and is information I will need, I just don’t know it yet. How much context do I need, how much background is appropriate, how can I possibly touch on the surface of topics that are so big each could warrant a book on its own?

To talk myself of the ledge of information overload, I’ve had to remind myself that all of it matters, that it’s all shaping something bigger and eventually it will become clear to me how the pieces fit. None of the knowledge will be in vain. Seriously, I’ve actually said this to myself in my head. (What can I say? Writing can be an isolating existence at times. I’m lucky I don’t say it to dogs.)

It reminds me a little of one of my early experiences freelancing. I pitched Idea A to a newspaper editor, who teased out a smaller thread from my original idea and assigned me Idea B as the story. I jumped in, reading multiple books, wading through research, interviewing national experts, revising draft after draft. I became truly engrossed in the topic, and rattled off statistics and factoids without ceasing to anyone unfortunate enough to ask me about it. I’m fairly certain my neck flushed and I talked with my hands, which happens when I’m either nervous or really animated.

Then the editor decided it wasn’t the right fit for her page after all. Of course I was upset; no byline, no paycheck, no recompense for hours and hours of work. But I don’t regret the experience at all. I now know so much about direct-to-consumer advertising of pharmaceuticals, and I still have strong feelings about it. The foundation I got from that story comes in handy when I’m interviewing people for other stories, when I’m doing research for my book, when I’m reading and responding to other blogs and essays, when I’m thinking about health reform, when I’m watching television or flipping through a magazine and am inundated with bouncing balls, buzzing bees, or luminous butterflies.

And when I have classes full of pharmacy students? I don’t regret for a second all the knowledge I gained because it allows me to engage in a more meaningful dialogue with them.

So yes, I sometimes need to remind myself that all of this data that is flying around will settle, and that none of it will be in vain. In a way, it’s also similar to all the researching and trial and error we do when we’re narrowing down diagnoses or testing different treatments. Not everything is going to yield the exact answer you’re looking for in that moment, but eventually you find it will answer other important questions, too.

While I prefer concrete answers when it comes to diagnoses and treatments, despite its stresses I see the value in unraveling questions. When it comes to writing, I wouldn't want it a different way.

When the Familiar Becomes Something New

2009-07-02T11:29:00.000-07:00

We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I'd spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)

Musings at the One-Year Mark

2009-06-24T07:57:00.000-07:00

A year ago today, I wrote this post to mark the official publication date of my first book, Life Disrupted. I talked about blogging, writing, and storytelling, and the power of narrative and the responsibility that comes with writing other people’s stories.

In the year since the book published, I’ve learned a lot, from how to pace book readings and radio interviews to how to switch gears from asking the questions and writing the material to being on the other side of the story. I’ve had the chance to connect with readers in person and online, and I’ve been fortunate to hear their stories. On the one hand, I’ve been particularly surprised by how many people with rare diseases I’ve heard from, yet perhaps I shouldn’t be surprised by that. I’ve said it before, but I really do believe the universals of living with illness outweigh disease-specific symptoms: denial, acceptance, disclosure, survival, guilt, vulnerability, etc.

(Interestingly enough, one specific thing in the book that resonated with a lot of readers was the infamous “honey mustard incident”—I guess reaching our own personal breaking points, even if the trigger itself is inconsequential, also defies diagnosis or length of illness.)

This notion of community or belonging is something that’s been on my mind a lot lately, both in terms of what I do here on this blog and in a much broader sense of the chronic illness population. I don’t consider this a celiac blog or a rare disease blog or a PCD blog but I write about issues related to living with those conditions when appropriate. It’s not a chronic pain blog per se, or an autoimmune disease blog, or an infertility blog, but again, when those topics are relevant to my life or readers’ lives, I write. I like writing about policy—and right now, there’s plenty of grist for that—but again, that’s part of the chronic illness experience.

Kairol Rosenthal recently wrote a great piece on the young adult cancer community, where she wondered if staying too close in the “safe” world of like patients meant missing out on the shared (relevant) experiences of others. She found she could learn from patients with totally different diagnoses who also had the same worries and fears.

Coupled with this post, a concept we discussed at the President Clinton event has been rattling around in my head for the past week or so. The conversation was about race, religion, respect and how (if) attitudes have evolved over the past few years, but Clinton’s thoughts on identity are very applicable to illness as well. He said (summarizing here) that often humans tend to identify ourselves by negative reference to others—so instead of saying “I am X” we are likely to say, “I am not X.”

Taking that and applying it to chronic illness gets interesting. There are divisions we could use to define ourselves everywhere: those who are lifelong patients versus those who get diagnosed as adults; those whose conditions are life-altering and those whose conditions are life-threatening; those with familiar, common diseases and those with rare diseases; those who live with chronic pain versus those who don’t; those who have a solid support system or access to appropriate health care versus those who might not…the list could go on.

We’ve all experienced negative referencing, whether it’s the waiting room where people are “competing” over who is the sickest, whether it’s in the doctor’s office when we’re filling out forms and checking off boxes that label our conditions, whether it is an offhand comment made by someone that hurts us. I started to do it myself above when I talked about all the labels that do not fit this blog. Really, chronic illness is a huge umbrella term and we all fit under it in some way or another.

Yes, of course there are very real differences—the newly diagnosed patient will face the shock of the “before” and “after” in a way others won’t; the person with a rare condition might face more roadblocks and challenges in diagnosis than the person whose condition can be diagnosed with a simple blood test. That is natural and inevitable. Over the past year, I’ve been lucky to hear from so many people who identify by inclusion, who seek out the shared experiences and emotions. As a society, hopefully we can continue to evolve in this regard. As patients, hopefully we can do that, too.

Thank you for sharing your stories. Thank you for giving me something to write about.

And of course, thank you for reading.

Health Reform Updates

2009-06-23T14:53:00.000-07:00

It’s another big couple of weeks in the push for health reform. During his press conference today, President Obama said that health care reform is not a luxury but a necessity. He clarified again that those with private insurance who are happy with it can keep it, but also made it clear as forcefully as I’ve heard him that unless major reform happens, they won’t be able to afford those plans in years to come.

As the lead up to Wednesday night’s “Questions for the President: Prescription for America” special on ABC continues, I saw Obama’s emphasis on containing cost in today’s press conference telling. After all, last week was a tough one for the push for reform, with many fearing the $1 to $1.6 trillion price tag associated with proposed bills would spell the end.

In the middle of the speculation about health reform’s demise and sticker shock came the announcement that Senator Max Baucus (chairman of the Senate Finance Committee) and the country’s pharmaceutical companies reached an agreement to help close the coverage gap under Medicare’s Part D prescription drug program, which enrolls some 27 million elderly patients. Prior to this agreement, Medicare recipients paid the full price of brand-name drugs once they reached $2,200 in medication expenses and until they hit an upper limit of $5,100—an expensive and problematic “doughnut hole.” In a press release from the White House, President Obama said “The existence of this gap in coverage has been a continuing injustice that has placed a great burden on many seniors. This deal will provide significant relief from that burden for millions of American seniors.”

You can watch President Obama discussing the prescription drug agreement here:

The agreement will result in an estimated $80 billion in savings over the next several years. According to PhRMA, “Under this proposed new legislative program – which represents the first important step in health care reform – America’s pharmaceutical research and biotechnology companies have agreed to help close the gap in coverage. Specifically, companies will provide a 50 percent discount to most beneficiaries on brand-name medicines covered by a patient’s Part D plan when purchased in the coverage gap.”

The savings are undoubtedly significant for the seniors struggling to pay for bills. They are small relative to the overall price tag of health reform, but a confident, emphatic stance from the Obama administration in the midst of all of this speculation is a good sign right now for anyone invested (and really at this point who isn’t, despite which side you might stand on?) in health reform.

I won’t see tomorrow night’s program—I’ll be in a plane, trying really hard not to catch anything since I do that like it’s my job—but I look forward to reading about it. As recent events illustrate, it should be an…interesting evening.

Is Soda the Next Big Tobacco?

2009-06-18T20:01:00.000-07:00

Prevention is always a big buzzword in health care reform, and lifestyle choices that decrease the risk of developing costly and debilitating chronic diseases are a huge part of this frequent conversation. A glance at the cover of this week’s Time magazine shows an issue devoted to prevention and wellness throughout the lifespan, and an article called “Food as Pharma” leaves no question about the impact of what we put into our mouths in terms of health and wellness.

With uncanny timing, the magazine arrived the day I had a scheduled interview with renowned nutrition/obesity expert Dr. Barry Popkin, author of The World is Fat as well as recent research linking the consumption of sugary beverages to negative health outcomes. He claims drinking one extra 12-ounce can of regular soda a day, at 140 calories, can cause you to gain 13 pounds in a year.

Dr. Popkin is a strong supporter of taxing beverages like soda and whole milk the way cigarettes are; in fact, he considers soda “the next big tobacco.”

When Massachusetts announced a plan to require chains to list the calories in their items staring next year, the gamut of reactions was predictably wide: some thought it was a great way to make consumers more conscious of their choices; others thought it was an egregious governmental interference into our lives. Against this backdrop, I was certainly excited to discuss Dr. Popkin’s research with him. Here is some of our conversation:

Why is soda the next big tobacco?

Like tobacco, soft drinks and sugary beverages have no health benefits beyond pleasing us, and they have many drawbacks.

According to Dr. Popkin, what makes sugary beverages unique in terms calorie intake is that drinking these calories does not reduce our food intake—normally when we eat food, even junk food, we cut other food intake down.

From an evolutionary point of view, he pointed out that humans always drank water or breast milk. If we go without water for three days, we could die but if we don’t eat, it could take a month to two months to die. Over time, we developed mechanisms where the food and thirst mechanisms are separate, which adds to the unique caloric qualities of sugary beverages.

“Not only don’t they benefit us but they a 100 percent to our poor health by adding to our calories,” he says. What’s more, research suggests that the fructose in sucrose (natural sugar) or high fructose corn syrup adds directly to visceral fat, which is the fat around the heart and liver—and it is the only substance known to do this. It is the most toxic type of fat in terms of diabetes and metabolic syndrome as well as some cancers, so removing sugary beverages is a prime prevention method. (You knew I’d circle back to prevention, right?)

What about the tax and health reform?

Comparing this to the decrease in smokers (and by extension, the health consequences of smoking) as a result of the cigarette tax, Popkin maintains that taxing soda and sugary beverages will reduce the risk of overweight, obesity, type 2 diabetes, and cardiovascular disease. (He also has forthcoming research in this area). Massachusetts is one of a handful of states considering this kind of tax. Popkin also noted that on a larger scale, the United States lags behind many high-end nations in reducing the consumption of sugary beverages.

“We are good at causing disease but not good at fixing it,” Popkin says, a comment that goes beyond the idea of the soda tax and hits on the basic structure of our current medical system. Right now, we spend too much on band-aids for the problems rather than taking steps to correct them at the source. To that end, Popkin sees the beverage tax as a major way to help fund reform and improve health and quality of life.

What is the response to those who think such policies might go too far?

In response to this sentiment, Popkin pointed to previous public health initiatives that were initially met with resistance, like seatbelt use, measures to curb smoking, and putting fluoride in the water. “Clearly there isn’t a single public health initiative that hasn’t faced these arguments,” he says.

He also counters with the following facts: Right now, we’re ranked between 30-35th percent in life expectancy and health care costs are swamping us. Need more statistics on sugary beverages? Forty percent of soda drinkers consume a whopping 600-900 calories a day from their drinks. And, as many of us might now realize, he says natural sugar is just as bad as drinks sweetened with high fructose corn syrup—they both contain fructose, and both add to visceral fat and calorie count.

The way I see it, framing soda as the next big tobacco is also an extension of an even broader debate: if prevention is a fundamental component of health reform, what is the best way to accomplish it?

It’s your turn to weigh in: is soda the next big tobacco?

For more information, check out the video posted below, where Dr. Popkin and colleagues discuss the health impacts of sugary beverages at a recent International Chair on Cardiometabolic Risk (ICCR) conference:

Update on the Clinton Blogging Event

2009-06-17T14:49:00.000-07:00

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…

Talking Health Reform with President Clinton

2009-06-16T06:04:00.001-07:00

“I’ll be surprised if we don’t get health care reform,” President Clinton said yesterday.

I should note two things about that statement—first of all, coming from someone with such an informed view of the situation, it is encouraging. Secondly, I didn’t get that quote from a press release or a conference call. I was actually sitting next to Clinton in a conference room where a few other bloggers and I had the chance to converse with him about health care, clean energy, and some of his projects at the Clinton Foundation.

Now, since most of my conversations take place in my home office with a speaker phone, a digital recorder, and frantic attempts to keep the dogs from barking and none of them typically involve sitting with a former leader of the free world, clearly this was an amazing experience.

Given its traction right now it was no surprise that we spent a lot of time discussing health care and health reform. As a resident of Massachusetts and a rare disease patient,
I came prepared with questions about primary care shortages with increased access to insurance as well as the treatment of existing chronic diseases.

Perhaps the comparisons between the current push for health care reform and Clinton’s efforts in the 1990s are inevitable, but the overriding sentiment I got yesterday was that yes, things really are different now. For one, Clinton noted the political and psychological landscape the Obama administration faces is much different. Disparate groups like health insurance companies, small businesses, and many other groups with different stakes in the debate are more willing to collaborate.

More tellingly, as Clinton said, “everything is worse now.” I know many readers of this blog can attest to that fact. Fifty million Americans remain uninsured, and as I mentioned to a fellow blogger before the meeting started, those who are underinsured often face calamitous situations. Adjusting for inflation, we have two-thirds of the disposable income we had when Clinton left office, and health care costs have doubled.

We’ve heard much of this before—our system is the most expensive but has poor outcomes; for our economic and physical health, reform is imperative; better prevention and care now means a healthier nation down the road. The real challenge is to change the way health care is delivered while still keeping costs down. It sounds so simple and yet so daunting at the same time, doesn’t it?

The Clinton Foundation is heavily involved in HIV/AIDS care in developing nations, and in discussing some of these initiatives the President mentioned the reluctance governments have to set up stable health care systems that account for malaria, TB, and the other very real health threats that end up affecting so many. As he said that, it occurred to me that our own switch from an acute, reactive system to a preventive, proactive system is no less significant and necessary. A piecemeal approach will not do it.

One of the most common concerns raised about Obama’s public option relates to Medicare reimbursements. (Of course it is the purchasing power of that potentially enormous patient population that many hope will curb health costs with more competitive private rates.) Anyway, an interesting distinction Clinton made is that reimbursement is not the problem; inefficiency is. It makes sense, but when I hear people talking about Medicare and modeling the public insurance option after it, so often the conversation stalls at reimbursements.

Related to this, when pointing to successful delivery models in Green Bay, WI and other places, President Clinton acknowledged that health care is both “an art and a science." A viable public option would need to be outcome-based if we’re to reach a goal of more efficient care.

Obviously there are many compelling reasons to embrace outcome-based treatments. For “clinically interesting” patients like myself, I hope a revamped health care system really does still leave room for the “art”—more often than not, that has made all the difference for me.

(Stay tuned for more posts from this event, but I need to add that not only does President Clinton read blogs and turn to them for information, he has also read Mountains Beyond Mountains and is friends with its main character, Paul Farmer—if you’ve read my post on narrative medicine, you know how fanatical I am about that book. If you care about public health and health disparities, it is an absolute must-read. But don’t just take my word for it, take President Clinton’s as well.)

Thank Goodness I Like Vegetables

2009-06-11T08:42:00.000-07:00

I realized just how much my lifestyle has changed over the past few years when a recipe for a weekend dinner party called for sugar, and I didn’t have any. Nor did I have artificial sweetener, artificial sweetener that looked and tasted like sugar, or anything else sweet, save the maple syrup we bought for when my niece slept over several months ago.

On the one hand, I felt a bit domestically delinquent. We usually had some on hand for company, but beyond that, isn’t sugar one of those staples every kitchen needs? Then again, we don’t usually have flour of any kind, either.

As I’ve written before about the evolution of my gluten-free life, I’m more the “explore naturally gluten-free foods” type of girl than I am someone who looks for gluten-free versions of “normal” food—but I recognize that’s just personal preference and that each person needs to do what makes the most sense for his/her circumstances.

Lately, it seems like celiac disease is popping up everywhere. Of course, there’s a certain celebrity’s newly published book stirring up a lot of comments, but there’s more to it than that. The other day at Gluten-free Girl, Shauna mentioned how many new products and companies are now on the market offering gluten-free baked goods, mixes, etc. In my own area, I’ve recently discovered that restaurants like Papa Razzi and Charley’s offer gluten-free accommodations, and I love hitting up regular spots like Jake’s Dixie Roadhouse, which has a GF menu and strict cross-contamination measures.

What’s more, the amount of people around me who know what celiac is or have just gotten diagnosed with it is growing.

“Do you think it’s like food allergies, where more and more people get celiac now?” someone asked me.

“Honestly? I’m no expert, but celiac is so often missed because it is so tricky to diagnose. I think the reason more people are now told they have it because awareness has grown; patients think to ask their doctors about it, and doctors think to check for it, even when “classic” symptoms might not be there,” I said. These are people who may have suffered for years without knowing why.

Anyway, all this is to say that much has changed since I was first diagnosed five and a half years ago. I can’t believe it has been that long. I’ve learned how to make a lot of new foods, I go out to eat without fear or hesitation, we’re growing our own vegetables in our yard, and I’m even in a supper club whose members view the challenge of GF cooking as a good one.

But now there’s a wrinkle. No, it’s not dairy; I cut that out two years ago. No, it’s not processed food; that went out the window a long time ago.

I’ve mentioned before what an soul-crushing, lung-battering winter I had this year. (Okay, maybe slightly dramatic, but it was Not. Good.) As a result of that seven-month siege, I am on a very aggressive, very long-term suppressive course of rotating antibiotics. I don’t talk about it much because there are so many strong opinions about these medications out there, and yes, they are overused by people with colds and yes it’s a problem…but for people like me, they are, quite literally, a lifesaver. Not only do they save lives in acute infectious situations, but they can also help slow down irreversible lung damage. If it’s a choice between several weeks a year as an inpatient and trips to the ICU and suppressive treatment that actually gives me some quality of life and helps control the many infections I get, it’s a no-brainer.

But my aggressive treatment is not easy on the body, most notably the stomach. As evidenced by lots of GI issues and a lovely film on my tongue, my long-term use of these meds has given me candida, an overgrowth of yeast in the intestinal tract (it happens when meds kill the healthy gut bacteria) that spreads throughout the body. Lovely.

The treatment? Well, coming off the meds isn’t an option right now, so I’m trying to follow the candida diet, which essentially means eliminating all sources of sugar, yeast, and fermentation in the diet. Now, clearly I don’t eat a lot of sugar but it’s more complicated than that: naturally occurring sugar in fruit is out; vinegars, salad dressings, honey, tomatoes, white starches…all out. The list goes on, trust me. Again, not the biggest deal since I don’t eat some of this anyway, but if you’ve read Life Disrupted you know how I feel about my honey mustard dressing.

Now, my lunch of green beans and chickpeas is a bit sad and lonely.

“Um, so what do you eat?” a friend asked, knowing I limit animal protein to once a day.

The list is short.

When I was first diagnosed with celiac, I never went through an angry stage or mourned all the things I couldn’t have; I was ecstatic there was something wrong with me I could actually fix. (This doesn’t happen often in my world.) I’m channeling that sentiment to this latest dietary challenge—I feel pretty crummy so if taking these steps can improve things even a little, it’s totally worth it to me.

But if you have any pointers, I’m listening.

Great Expectations

2009-06-03T05:27:00.000-07:00

I have a definite routine to my reading—every morning, it’s the Boston Globe, the NYT, and then I scan Salon and Slate, keeping track of relevant news, health/science updates, etc. (I get up early and I’m a fast reader). And like many of you, I have a blog routine, a bunch of sites I check in on regularly or follow through feeds.

One of my favorite non health-related blogs is Penelope Trunk’s Brazen Careerist, which is “advice at the intersection of work and life.” I don’t even remember how I started following it—likely it was a blog read by someone whose blog I read, because isn’t that how it always works? Her posts about Generation Y (by most measures I am technically a “Y” but sometimes I’m an “X”), and navigating a career path her thoughts on the “life” part of the work-life balance are smart, entertaining, and often funny. They make me think, even if I don’t always agree, and that’s why I like them so much.

As I sat down to write a post this morning—coffee consumed, chest PT and reading completed, full day’s worth of tasks listed and ready to be tackled, and the same overwhelmed feeling I went to sleep with currently coiling my stomach—I was blank. Sometimes I have posts I am burning to write, paragraphs form in my head during my treatments, transitions cement themselves while I am at the gym, ideas get jotted down on my laptop’s Stickie notes or in the notebook I carry with me everywhere.

When I don’t have something I am really interested in or compelled by, I won’t post for the sake of posting. I realized, though, that this overwhelmed feeling was something I wanted to write about, this mix of anxiety, apprehension, hope, optimism, fear, and excitement that is my constant companion lately. But I’m less interested in the teeth-grinding and the late-night list-making part of it, and I bet you are, too.

No, a much better way to broach this topic is to turn to this post on Brazen Careerist, “Career lessons from Susan Boyle’s Success.” Penelope makes several great points about talent, hard work, and mentors. But the part that resonated the most with me, the thing I needed, was about Seth Godin’s writing on The Dip. She summarizes his idea: “…You have to try something big, and you have to accept that anything big and huge requires you to have a dip – a point when you are wondering if it is worth it. And that’s where most people quit. For the most part, you cannot do something big without going through this process.” She drew parallels to her current start-up company, and to Susan Boyle’s choice of a really hard, really “big” song to bust out with on Britain’s Got Talent.

I think a lot of us are in various stages of the dip right now. Maybe we’re trying to reinvent ourselves after an economy-inspired career change. Maybe we’re at tough parts of a diagnostic health journey, or working through a challenging stage in a relationship.

(Or maybe, like in my house, we’re grappling with a book project and other work that is as exhilarating as it is exhausting, or we’re preparing for a huge exam with a ridiculous amount of material covered and an insanely low pass rate. You know, just as examples.)

Whatever the scenario may be, we’re all operating on the assumption that the hard work and sacrifice are worth it, that the difficult decisions we’ve agonized over in bed, in doctor’s offices,at our desks, etc are the right ones.

We all have our dips, personally and professionally. And I also think that most of the time, now matter how tired or confused we are, we know it is worth it, that anything worth having is worth the demanding journey to get to that goal.

But it sure is nice to have someone remind us now and again.

A Better Place

2009-05-27T13:12:00.000-07:00

This past weekend, I opened up my office window and let the warm air fill the stuffy room. It was a gorgeous day where the sun was high and warm but the breeze kept the heat from being oppressive. Later, when we took a break to walk the dogs around a nearby pond and I blended in with the cyclists and joggers and hikers, I even felt healthy.

(Okay, so maybe I coughed up half a lung when we got home, but productive coughs are a good thing in my world.)

More than that, I felt so far removed from the long, hard winter (well, fall, winter, and most of spring) I’d left behind me. In my consciousness those months were wrapped together underneath a disorienting haze, in sharp contrast to the bright sunlight, blue sky, and green grass before me. Nothing about them was distinguishable, and I preferred the abstraction of it. It proved to me there was enough distance to solidify the change I felt: the change in seasons, the change in infection level, the change in medication protocol that, while challenging, is definitely worth it.

This morning I awoke to chilly temperatures, a gray sky, and intermittent rain. Not a big deal, and certainly conducive to working through a heap of writing and editing.

But for one brief moment, as I kicked water off my sneakers and unzipped my sweatshirt, I suddenly had a very vivid image of the winter. One specific day in winter, one that stood out again in my mind just as definitively as the bright sunshine that lit up my office just days before, and one that is emblematic of the whole seven month period:

It was a Thursday. I remember watching the snowfall total in the morning and praying, praying classes would be cancelled because I felt terrible but I’d already cancelled them the day before due to illness. I knew I couldn’t scrape by managing them online again. My peak flow readings were so far into the red zone I wouldn’t even tell my physical therapist what they were (but they’d been like that for days so I’d adjusted to it.)

As the snow gave way to icy, freezing rain that turned the roads from slick to downright treacherous, I knew using our tiny little car wasn’t an option. The walk to the subway station is normally very short, but between the snow, the ice, the heavy bag, and the lack of lung capacity I had from the acute infection, it took me 25 minutes. Getting through class took every remaining ounce of energy (and oxygen, apparently) and what I remember most from when I exited the building was this:

I was stuck. It was now nighttime, and there was no way I could get to the (nearby) subway stop and get home. Not with this bag, this infection, these lungs, this tired body, and not in this frigid slushy mix.

(And my stupid galoshes were leaky. Sure the pattern ones look all cute, but they can’t hack it in New England.)

I needed my nebulizer, I needed air, I needed my briefcase to not weigh so much, and I really needed it to not be snowing/sleeting/raining/icing. I probably needed IV antibiotics too but that particular conversation would happen a few weeks later.

Or, I needed my husband to come and get me, snaking his way through city traffic to take my bag and my hand and somehow get me home.

And of course he did, and of course we made it home, and of course I’d been in situations far more serious than this. But for some reason that night, the commute, the cold, wet feet, the bloody cough, the absurdly heavy bag, the rawness—they all conspired to wear me down in every way.

Maybe it was just the chill in the air today that made me remember how raw I felt that night, or maybe it was the wet feet. Whatever triggered the memory, it was brief and fairly inconsequential, filed away for a blog post later today but otherwise buried underneath morning headlines, client specifications, and e-mails.

So why go through the process of describing an event that ultimately has little impact on me now? (Other than to flex my descriptive writing muscles after hours of more technical writing and research, that is.)

For a project on gender I’m researching the relationship between chronic illness and PTSD. At first, I was looking at the potential emerging link between PTSD in soldiers who have seen combat and the development of chronic illness later in life. But as I dug deeper I found another wrinkle, one that hadn’t even crossed my mind: formerly healthy people who developed PTSD as a result of sudden, life changing (and often excruciating and traumatic) illness. For patients like this who improve and then later relapse, even if it is not as severe a relapse as the initial event, the worsening symptoms can serve as sort of a trigger that brings them back to the horrible moment where everything changed radically, or back to moments of unimaginable physical pain, etc.

(I’m summing a lot of this up and probably not eloquently but hopefully it makes sense.)

It wasn’t a phenomenon I’d heard of before. And clearly my little example of wet feet making me think of a nasty infection and a nasty storm is just that: a little example of the power of memory and of certain details to bring us back to a different place. I’m lucky the place I went to wasn’t bad, just a blip in a crummy winter, something I could use as stand-in for an experience that is not mine. I'm lucky to look back and say,"I'm in a better place."

If any of you out there do have personal experience with this, though, I’d love to hear your insights…

Dissecting a Diagnosis

2009-05-20T07:24:00.000-07:00

Since my presentation on employment and young adults at DePaul a few weeks ago, I’ve been thinking a lot about diagnosis. During the Q&A, we talked about whether there was any way around the almost myopic focus on the condition and symptoms new patients often experience during and right after diagnosis.

I considered that question for several days after I answered it (in short, it is a life-altering experience so in the beginning, it seems natural to me that it would consume a lot of emotion). I’m not one to start constructing categories for groups of patients, since the universality of the chronic illness experience is something I feel strongly about, but I have always had one major distinction in mind: patients who have been sick their whole lives, and patients who were healthy adults before they were patients with chronic illness.

I think that distinction is important, and that’s why I tried to include patients from both camps in my book. Each group has its own unique challenges: people like me never have to go through that huge transition from “before” and “after” that formerly healthy people do. We do not have to grieve for what used to be, or mourn for the healthier, more dependable bodies we used to have.

(Not that we don’t have our own set of losses to deal with; we do.)

It’s a question that seems to be popping up on blogs and in discussions a lot lately: Which is better, to have known healthy and a “before” or to have never known a “before?”

All I can say is that this is my normal, so I don’t miss what I never had. Nor do I really spend too much time thinking about what it would be like to have a different experience, to envision my life minus the major medical calamities and minor comical indignities.

But lately I’ve realized there is more to it than simply healthy versus sick, or before versus after, and it relates to the process of diagnosis. True, I will never share the same shock and transition that once healthy people do when they become sick, but I can commiserate with the “before” and “after” of getting a diagnosis. An accurate one, I mean.

Sure, I’ve been sick since my first auspicious breath of air (hello collapsed lungs and pneumonia) but for the majority of my twenty-nine years, only some of what is wrong with me was diagnosed and treated correctly. I know what it’s like to have doctors assume you must not be following their directions if you are not getting better, and I know what it’s like to finally get a diagnosis that matches your experiences and symptoms, that takes all the complications and contradictions and makes sense of them. As I’ve written before, when the explanation of illness matches the experience of illness, it’s a good thing.

Last fall, I asked you about the semantics of illness, where I made distinctions between the biological aspects of disease and the patient’s subjective experience of living with illness. As I wrote in the follow-up on language and the patient experience, having PCD and bronchiectasis did not make the actual symptoms I’d lived with forever different; it just made them more understood.

Which leads me to my final point—I realize it’s been a circuitous route this time. (Honestly, my propensity to ramble is directly related to my caffeine intake, and the filter in the coffee pot has been broken all week. Less coffee=more words.)

Where does all this leave the people who live with symptoms but have not received a diagnosis? If a label doesn’t change the course of treatment, perhaps it’s not as big a deal. But what if it would change it, the way it changed mine? And more compellingly, does it change the way the external world—from doctors and nurses to employers to friends and family—responds when the patient can give a concrete name or label?

If it does, then the real question is this: why are we so intolerant of ambiguity?

Women and Health Care: Are We Feeling Better Yet?

2009-05-13T12:17:00.000-07:00

Since writing and publishing Life Disrupted, I’ve paid special attention to books and anthologies that deal with the patient narrative. (I have a more in-depth exploration of narrative medicine and a list of suggested titles if you’re interested.) This spring I reviewed Everything Changes, a book about young adult cancer patients, and found the similarities between young cancer patients and young adults with chronic illness compelling.

More recently I had the chance to read
Are We Feeling Better Yet? Women Speak About Health Care in America, edited by Colleen McKee and Amanda Stiebel. With a forward written by my friend and colleague Jenni Prokopy of ChronicBabe and a submission from one of my favorites, Paula Kamen, I was especially excited to jump into this diverse collection of essays. Here again I found the universal questions and insights that came out of very different experiences with illness and health care to resonate the most.

When I hear the phrase “health care in America,” I instinctively expect a lot of facts and figures: how much chronic disease costs have risen, insurance premiums and co-pays, political debates over mandates or Medicare reimbursements, how many Americans remain uninsured or underinsured. Let’s face it, the system is confusing quagmire of contradiction and disparities, and much of what we read about is analysis or opinion about these issues.

While facts and figures are seminal to health care reform, I have always believed in the equally compelling power of the personal narrative. Regardless of differences in diagnoses, treatments, ethnicity or geography, these women’s stories all reveal frustrations, challenges, and insights that speak to the central question linking these 21 essays together: Are we feeling better yet? As the editors write in the introduction, “To even to begin to answer that question, the patient’s voice has to join the conversation. She can’t be entirely spoken for by charts, case studies, shiny magazine, politicians, physicians, pharmaceutical reps. For genuine healing, we must tell our stories—and hear them—in a way that is honest and real, even when the truth is ugly, unladylike, and sometimes, not even nice.”

It was with that expectation of unflinching narrative that I dove into the essays, and as a patient and a writer, I was not disappointed. I’ve come to expect topics like poverty, racism and health disparities, and inefficiency and bureaucratic stalemates to be a large part of the patient experience and a necessary part of any discussion. However, I was glad to see this (unfortunately all too familiar) terrain handled so well, revealing nuances to these universal problems that remain in my mind.

Terri Griffith’s wry rumination on “free care”—a merry-go-round of pushing papers and passing the buck that left her without therapy for depression and wasted a lot of time and resources, made me clench my teeth in frustration for her. The staggering wait times (up to eight hours) and dilapidated conditions Birgit Nielsen witnessed at a Los Angeles county clinic for women was bad enough; the shocking racism her doctor displayed towards Spanish-speaking immigrants and the preferential treatment her white skin afforded her was worse. Based on these experiences, we certainly have a ways to go in terms of providing quality care to everyone.

In “A Slight Case of Hypomania,” Anita Darcel Talyor writes about living with mental illness and the constant choice between paying for treatment or paying to live her life, between remaining untreated or living in an overly medicated, dulled state. But her personal negotiations give rise to larger questions:

“Sometimes I wonder if normal isn’t a myth, a state of magical realism, a place of the imagination against the backdrop of lies. Is normal a thing of the middle class suburban family? Is it as chic as the gay city dweller? Is it middle American red or coastal blue? Is normal the adjective of the elusive mainstream? Can I be normal with a diagnosis? Is it normal to be educationally elite yet live in poverty? Can I be normal if I am fat?” (58).

Moments like these, when the many universal complexities of the patient experience are laid bare, are the ones that resonate most with me. I’ve heard the policy wonks, I’ve read the Op-Eds, and I’ve and stared at the numbers. They are important, but they don’t get at my core like these moments do. Whether it’s receiving a life-altering diagnosis or a delayed diagnosis, having to choose between personal belief systems and those of the medical establishment, or being privy to the insider survival tricks and processes of cancer treatment, the personal insights these writers provide do much to illustrate where we are—and more importantly, where we have to go.

Some essays speak more directly to the question of “Are we feeling better yet?” than others, and personally those are the ones I enjoyed the most. I started the book wondering if it was merely a foregone conclusion that we can’t really be feeling all that better yet; after all, if the system was working well we wouldn’t need analysis and Op-Eds and consensus talks. But I finished it feeling encouraged. These stories aren't always pleasant or easy to read, and that's exactly why we need them. We can learn from them and draw from them as empowered patients and advocates…and that’s certainly a step in the right direction.

Disease Prevention and the 4th Summit Conversation

2009-05-06T06:48:00.000-07:00

Since I spent yesterday talking about health insurance, it seems fitting to switch gears to another health reform discussion: the fourth America’s Agenda Health Care Summit Conversation, happening today at 11am PST at the University of California San Francisco.

I’ve mentioned these Summit Conversations before, and I do so again because I find the idea of consensus in health care reform both utterly essential and hard to envision. Yet it isn’t as hard to achieve as we used to believe, or perhaps as past attempts at health reform would have us believe. After all, the diverse group of speakers who come together for these talks, from labor, government, health policy, pharmaceutical, and other stakeholders, prove that there already is consensus: all sides agree we need to reform health care, and now is the time. Talks like these are a way to start hashing out how exactly that reform should happen.

As a patient with multiple chronic illnesses, I’m always particularly interested in how these stakeholders approach disease prevention. Considering that 75 percent of health care spending goes to treating patients with chronic disease, switching from a system that still favors treating acute health crises over prevention and wellness—a “sick” system, rather than a “health” system, as some Summit leaders have said—is critical.

And of course, as a rare disease patient, I’d like to see this notion of prevention now to control costs and improve quality of life later include covering the appropriate treatments we need to prevent disease progression, a distinction that matters to millions of people who live with conditions that are not as heavily influenced by lifestyle and behavioral changes.

To see what some Summit speakers have to say about disease prevention, check out the video below, and browse other YouTube videos on topics covered in these talks.

Talking Health Insurance

2009-05-05T11:30:00.000-07:00

So a few days ago I watched the Talking Health webcast on health insurance, presented by the Association of Health Care Journlists, The Commonwealth Fund, and the CUNY Graduate School of Journalism.

I listened both as a journalist interested in how to cover this controversial issue, as well as patient with an obvious vested interested in health insurance reform, and the discussion did not disappoint on either count.

For the purpose of this post, I’ve decided to highlight some of the points/questions I think matter most to readers and patients with chronic illness—after all, a key to managing chronic diseases and preventing disease progression is having health insurance that covers medications and appropriate treatment therapies. And, as the NYT’s Reed Abelson, one of the four panelists, pointed out in talking about stakeholders in this debate, patients are the most obvious source but are not well represented.

Do we really know what the difference between public and private insurance is? While some people do, and they usually equate private with better care when they do, many consumers aren’t sure what the public option really entails. According to panelist Cathy Schoen, senior VP at The Commonwealth Fund, context is important here. She says the type of plan usually mentioned in national reform would offer for the first time to people under 65 a plan that is similar to Medicare, one that could compete with private care. The goal of this type of plan is to provide better access and control costs, and consumers would have the choice to keep their existing (private) insurance or choose this new public option. The public option would be standardized across the country and wouldn’t change much over time.

Bruce Bullen, COO of Harvard Pilgrim, a nonprofit managed health care organization in New England, points out some of the pluses and minuses with public vs private insurance: For example, private insurance companies focus on customer service, network building with doctors, and are inherently local/regional, while public ones are more standardized, easily understood, more regulated and perceived to be more equitable.

Other benefits and drawbacks we should consider? The public plan would offer lower premiums, which is attractive to consumers. At the end of the day, we need to control soaring health care costs; advocates of the public plan point to its purchasing power as an advantage, since it would be purchasing for such a large population. Its economies of scale and lack of a need to market itself are also positives. Since healthier competition usually means cost would come down, the public plan could potentially be cheaper. As we know, private sector rates are higher ($12,600 is the avg family premium), but Bullen contends that well-organized plans like HPHC have such mechanisms where they can be quite competitive with public rates.

But is it possible for private plans to compete with public options? At 20-25 percent cheaper than private plans, Bullen says probably not, pointing out that these savings do not mean the public plan would control health care costs. If we’re making the comparison to a Medicare-type system for people under 65, consider that providers often can’t live on what Medicare pays so they move to private insurers for competitive rates. The cost and quality problems that are so widespread now would continue. Also, consider if providers are asked to sign on for less, would they? Or would the government mandate participation?

Whether through a public plan or a private one, Cathy Schoen asserts that we need to be paying for care differently. To do this, we should harness the technology we have but do so with clear outcomes in mind and in the right circumstances. Appropriate technology requires more incentives, which we don’t have right now. In essence, we need to ask: Is it better, and do we have to pay as much for it?

More thoughts on public plans:The term public plan means different things to different people. Some key variations within that term include a federally sponsored new plan to market or a plan that piggybacks with Medicare. It’s the sponsorship that is critical. Medicare uses private claims payers and pools risk, and one of the biggest fears and strengths of the public plan is that it pools risks.

What can government do if doctors refuse to treat people with the public option? Cathy Schoen agrees this is a critical issue, especially since it’s known that Medicare pays far too little for primary care. The public plan would have to come in with competitive rates and if everyone was insured rates between the two wouldn’t be as different because right now we’re already paying for those who don’t have care at all.

Would the public plan become dumping ground for sickest people? Schoen says it is a risk in a reformed insurance market where no one could be turned away or told they are too sick. Things like age variation where a 50-year-old could say “don’t ask me about health status just sign me up” would help combat this, but we still have to worry about risk selection; as soon as you have competing plans, no matter the name of them, this is still a concern. The way to address it is by rewarding plans.

How will public plans affect the innovation US is known for? According to Bullen, it will negatively impact innovation. One of hallmarks of private care is responding to consumer needs and giving answers that work. That’s a big tradeoff—public plans have other strengths, like standardization and equity.

Anyway, these are just some summarized snippets I felt brought up compelling points on both sides. While it’s a huge issue and has everyone talking, there are so many details, variables, and benefits/drawbacks involved in any type of reform that it’s helpful to hear some of them explained in accessible terms. The terms “public option” or “universal health care” spark so many competing emotions and definitions, from some people imagining hybrid plan like we have here in Massachusetts to conjuring up a single-payer system more comparable to Canada or the UK. For what it’s worth, I found the discussion of a public plan similar to Medicare but for younger people a helpful way to frame the inevitable comparisons between private and public insurance plans.

(As an aside, the second segment with the LAT’s Noem Levy and Reed Abelson was great, so if you’re a writer wondering how to find sources for this and what other questions to consider, definitely check it out.)

Do You Have a Job? (Or, The Truth About Self-Employment)

2009-04-30T08:52:00.000-07:00

“Are you an epidemiologist?” the man in the seat next to me asked, gesturing towards the 200-page deep stack of journal articles I’d been attempting to annotate for most of our flight.

“No, but it would sure make this easier if I were. I’m a writer,” I told him. I noticed he was reading a book about epidemics, and for the last twenty minutes of the flight, we had a great discussion about disease, drugs, and the social influences on the two.

Turns out, he works for a tiny pharmaceutical company where the handful of employees work mainly from home. We left diseases and drugs aside to discuss working from home—or, more accurately, the misconceptions about it and the hidden benefits of it. I work from home part of the time, and I was traveling to speak at a symposium about young adults with chronic illness in the workforce, so this was definitely up my alley.

I’ve been told I’ve been a bit feisty lately, and this subject definitely gets me animated. Despite how many people telecommute or are self-employed, I still feel like sometimes there’s this attitude that working from home is somehow easier, less demanding, or less real “work.” My fellow passenger has noticed the same vibe.

Um, no. It’s different, but not easier. This isn’t an illness-specific post; so many writers, editors, artists, designers, consultants, sales people, etc work from home or are self-employed, and they know it’s just as draining as the 9-5 grind, but in its own ways.

A few days a week I do not have to deal with commuting, and I realize how fortunate that makes me. But I’m also at my computer, chest PT completed and coffee consumed, and at work by 7:30 at the latest every day, so I put that commuting time to good use. While the isolation of working from home can be an issue, my airplane companion pointed out a real bonus of that isolation: he doesn’t waste time being distracted by office chatter, people popping in to ask him questions or procrastinate; he just gets his work done.

“I get more done working straight through from early morning to lunchtime than most people do in a whole workday,” he said.

I can relate. My office is my laptop, and while I break for lunch and then again at dinnertime to go to the gym, I come home and usually get back to work, sometimes not stopping till 11pm. This is not a complaint, and it’s partially just my personality to be like that so I have no one to blame for the lack of boundaries but myself. I’ve started trying to leave my laptop up in my office after 8pm so I’m not tempted to work, and the physical boundary of the staircase is helpful.

I don’t have to slog through snow and rain when I leave the office at night (well, I do during the semester, so I know it stinks), but the flipside to that is that I don’t ever “leave work at the office.” (Does anyone ever, really? Even if it’s just thinking about it?) Any writer or teacher can relate: weekends, evenings, and holidays equal copious essay reading and grading and client deadlines and research and e-mail requests. I’m being honest when I say the last time I didn’t do any type of work on a weekend or vacation was my honeymoon almost four years ago. Anyone in any kind of freelance position knows that when you’re not pitching, pitching, pitching now, you’re not getting paid later. It’s exhilarating and a good motivator, certainly, but only if your risk tolerance can take it. It’s not for everyone.

Again, this is by no means a complaint. I’ve made these choices in my life and am responsible for the outcomes and I love writing books, teaching college students, and freelancing. I love that I have the flexibility to go to the doctors when I need to and make up the work, and that I can avoid public places where I could catch things during bad months. I also know those of you who are not self-employed can say the same thing about working weekends and vacations—most people I know log incredibly long hours and they don’t have the choice to do it from their homes like I do.

Really, I’m just saying that while there are many, many positives to working from home, like setting our own schedules or wearing comfortable clothes, that doesn’t mean it’s some kind of cakewalk where we’re merely lounging in pajamas and watching television, or that our workday hours aren’t as valuable (or as stressful) as other people’s.

Can you tell that I’ve heard comments like that and that I get lots and lots of interruptions during the day because I’m “not at work?” Does anyone else have this problem? I think part of the reason I struggle with work-life balance and boundaries on my own is because I have to work so hard to combat the assumption I do not have a job because I am not in an office environment. Seriously, it’s been a few years of doing the teaching and writing thing, and I have someone who still asks me if I have a job…well, my college students don’t teach themselves and books and articles don’t write themselves, and so yes, I’d say I have a job. And I have two offices: one on campus, one in my house. Neither is more “real” than the other.

(And as an aside, the days where self-employed people who are also chronically ill actually are in their pajamas? No cakewalk either, despite how good I've gotten at typing while hooked up to my nebulizer.)

I’ve done both, and there are definitely things I miss about the traditional workplace: the interaction with co-workers, the stable paycheck, the benefits, the ability to take a real sick day. I know, I know, there are also many downsides to 9-5: cranky bosses, gossipy co-workers, office politics, long commutes, unwanted travel, unfulfilling projects, etc. I guess that’s my whole point: neither option is without its benefits as well as drawbacks. Let's make sure we respect the work that is done on both sides.

My mother always said she could tell I was feeling better when I got feisty (really, a tactful word for ornery when she used it) so I guess this is a good sign.

Oh, and the presentations about employment were a blast. Once I’m up there I have a lot of fun. The icing on the cake? Having dinner with the equally fabulous Paula Kamen and Jenni Prokopy, where we ate delicious GF food and talked about one of my favorites subjects: narrative medicine.…and of the work that is writing, of course.

Young Adults, Chronic Illness, and Employment

2009-04-20T09:09:00.000-07:00

Just a few weeks ago, I wrote a post where I confessed that the
smaller daily challenges of being employed with chronic illness were more challenging than normal this year. In Life Disrupted, I devoted several chapters to the larger, macro issues that are part of any discussion of work and chronic illness: disclosure, flexibility, health insurance, compromises, optimal career paths, etc. I also interviewed the incredibly wise Rosalind Joffe about her thoughts for younger employees who have CI.

What the past few months have shown me is that even after the supposed “hard part,” the discussions we have and decisions we make to try and balance our ambitions with our health, still there is a tenuous push and pull between the ideal and reality. It is an evolving process, and while I have worked out a fairly successful balance right now, I know my career will continue to change as my professional and health needs demand. That is what makes it both exciting and a bit scary.

I can honestly say that when I graduated from college a few years ago (okay, seven years ago, I fully admit I am getting old!) I would never have predicted I’d be doing what I am doing now, but I definitely knew I had some tough choices to make. At the time, I was still working through accurate diagnoses for my immune and lung problems and spent anywhere from 4-10 weeks a year in the hospital. I had to be realistic about what I could expect from my body, but I was also unwilling to abandon the career path I was most passionate about. I just had to figure out a more creative way to get the writing and publishing experience I needed.

Anyway, I’m thinking a lot about those early career days right now as I prepare to speak at DePaul University next week. My topic? You guessed it: career considerations for young adults leaving college. There are so many threads to this discussion, and many of these points were raised by patients I interviewed for my book:

Our careers are often a huge part of our identity, especially when we are in our twenties. Think about a typical night out—how often do people ask you what you do? What are you if you are young and not working?

Many companies and institutions are not equipped to deal with (and do not understand) the fluctuating nature of chronic illness.

Young people are often the most likely to be uninsured or underinsured, so many young people with CI must choose between benefits and deteriorating health.

We often have to make choices very early on in our careers—when our healthy peers are building a name for themselves—that put us at a disadvantage in terms of trajectory.

Of course these are just a few different points relevant to young people entering the workforce. As I gather my thoughts, I’d love to hear from any of you out there who are in the midst of these decisions, or remember what it was like to face the working world as a young adult with chronic illness. What wisdom, advice, or hindsight can you offer this next generation of employees with CI?

The Waiting Game (and how to play it)

2009-04-14T09:23:00.000-07:00

(The third in an occasional series about pregnancy and chronic illness.)

A lot of the discussion in the first two installments of this series on pregnancy and chronic illness deals with what happens once children enter our lives: How do we be the parents we want to be with bodies that do not cooperate? In the ever-evolving dialogue of Can vs Should, it is an essential topic, one we need to keep picking back up.

But today I am thinking about the tricky terrain that comes before a baby, the decisions and risk analyses and variables we must weigh when figuring out how it is we will become parents.

For some women, infertility or infertility as a result of other existing illness is the issue. For others, being able to conceive children may not be a problem but due to high-risk medical situations, carrying them is. For others, it is a combination of both.

Regardless of the reasons why things don’t happen quickly, there is still the waiting game, the period of time between when you first realize things will not be easy or quick and when you actually have a child, whether through adoption, IVF, gestational carriers, etc.

Now, I do not claim to be a veteran in these matters and like many aspects of daily life, there are some conversations that will remain offline. Already there are many, many writers and bloggers who speak compellingly about infertility, adoption, and other options. But what I do know is that just like there are so many universals to living with chronic illness, there are many universals to this experience no matter where women are in this wait or why it is they are waiting, namely:

Every decision is deeply personal and should be respected, not judged. In the end, it is your family and your child’s future that matters, not what other people say or think (if only it were that easy!) And of course, the same applies to decisions to not have children after all--only you can truly know what is the best choice.

Each person’s situation is unique and cannot be applied to other couples with other sets of variables (for better or worse). Even women with the same diagnoses can have very different outcomes and different priorities going into things, so do your research and talk to everyone you can, but remember that what works for some people may not be the best fit for you. And that's okay.

I also think that sometimes the hardest part of the waiting game is interacting with other people who might not know the whole situation or might not know what to do or say. It’s a shifting landscape for everyone involved:

If we want to talk about it, we will. If we don’t bring it up or deflect the conversation, take that cue from us.

Don’t think because we don’t want to talk about this particular aspect of life that we don’t want to talk, or get phone calls, or be the same people we were.

There is a difference between listening to us and advising us. When we want to fill you in but are not yet ready or interested in feedback, respect that. If we’ve brought you into these kinds of discussions it is because we value and respect your thoughts, but know there is a time and a place for your take on the situation. Sometimes we need to figure out how we feel about things before we can productively process what others think or feel. (I'm sounding a bit demanding here, aren't I? Rest assured these are the same expectations I have for myself and my own personal conversations about this.)

What you may see as a positive may represent a loss to us, or vice versa. What may seem difficult or not ideal to you might just be wonderful news to us. Everyone involved has a right to his/her emotions, but it’s important to remember (or even expect) that there is no guarantee we will respond in the same way.

Please don’t think that people in this waiting period don’t want to hear about other children (or pregnancies), or spend time with other children. Our lives are undeniably richer because of the children already in them, and nothing going on in our lives could take away from that. I can’t speak for anyone but myself but the way I see it, there is no defined quota of babies or good news out there so your good news is just that—good news. It has nothing to do with my situation or my potential to have a family. Why would I begrudge someone else for having the very thing I know is so worth having? So no weirdness or walking around on eggshells, please!

Like I said, I’m certainly not an expert or veteran in all of this, and I know many of you have seen and experienced much more. If you have other considerations, suggestions, or general words of wisdom for everyone involved in this, please leave a comment.

(Editor's update: I forgot to mention that the best thing you can ask for are these words: "We're here for you and support you in whatever decision you make." Fortunately, this is is something I've heard often.)

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A totally unrelated PS--Notice the new look at A Chronic Dose? Many thanks to Pink Dezine!

3rd Summit Conversation: Interview and Insights on Health Care Reform

2009-04-07T11:46:00.000-07:00

If you’ve read recent headlines, scanned online sites, listened to President Obama speak at recent news conferences, or followed the flurry of Twitter updates and Facebook status messages, then you know that health care reform is a topic reaching across all types of media.

And with good reason, given the huge economic toll rising health care costs places on us, not to mention the quality of life issues involved for people without access to care or access to appropriate care.

Obviously, health care reform is not a new topic on this blog. A few months ago I wrote about the consensus-building Summit talks sponsored by The America's Agenda Healthcare Education Fund. Today, April 7th, is the third Health Care Summit Conversation, hosted by Tommy G. Thompson, former Wisconsin governor, U.S. Secretary of Health and Human Services and Republican presidential candidate, together with the University of Wisconsin School of Law. Click here for streaming video of the event.

The point of these talks is to bring high-profile individuals from all different stakeholders involved in reform together. In a sense, the fact that individuals from across the health care spectrum (politicians, policy experts, health care providers, labor leaders, health insurance and pharmaceutical companies, etc) are engaging in these kinds of talks proves there is consensus: everyone agrees something must change, and that now is the time to do it. These conversations focus on how we can actually make that happen.

I tend to focus on the patient aspect of health care reform since it is what I live with every day, so I was interested in the opportunity to speak with Summit panelist David Y. Norton, Company Group Chairman, Worldwide Commercial and Operations of Johnson & Johnson this morning.

Given that chronic disease accounts for 75 percent of all health care costs and this is a chronic illness blog, you can probably figure out what topics I centered our conversation on. Here are some highlights:

On the best ways to reform how we approach patients with chronic disease—“There is no holistic view of the patient,” he says, pointing to our current fragmented nature of health care delivery. Whether it’s hospital care, medication, doctor appointments, etc, a more collaborative and holistic approach would not only reduce costs but increase health outcomes.

Related to this notion of holistic care is the medical home, with its emphasis on quality primary care. In addition, he feels that electronic medical records will help ensure information is shared “evenly and equally” with relevant parties.

He echoes the sentiments expressed by many right now that shifting our focus from acute treatment to incentives for wellness and prevention would make a big difference. “We currently reward treatment on fee-for-service basis, therefore the more tests you, you get paid more. But that’s necessarily quality care, so we need to focus on prevention and wellness.”

Co-pays are a disincentive for patients, particularly those with chronic diseases, since increased co-pays shift the burden of cost to them. People who don’t take their drugs see doctors more, end up in hospitals more, and end up accruing more health care costs later.

In terms of wellness initiatives and incentives, Johnson & Johnson already has a “very active program” for its employees. It includes a smoking cessation program, financial incentives for employees, healthier food options in the cafeteria, in-house fitness centers, etc. The annual savings in employee health costs is about $400. While there are other private companies doing similar things, Norton believes “we need to change the health care system to incentivize those patients in the private system and the public system to address prevention and wellness.”

On treatment of patients with rare/genetic/existing chronic disease (you knew I’d ask!)—Fundamentally, the goal is for affordable access to quality care for all citizens, and he believes pre-existing conditions should not exclude anyone from getting that quality care. More specifically, he points to stem cell research and other innovations as keys to eliminating or alleviating certain diseases.

(An aside: as a rare disease patient I would love to see even more innovative drugs come down the pipeline—can we agree we have enough nose sprays and acid reflux pills and look to sound policies that encourage the research and development of drugs that tackle smaller and rarer disease populations? Like much of this, it’s a collaborative effort.)

On the role pharmaceutical companies have in health care reform: Norton mentions that currently, pharmaceuticals account for 10 cents of every health care dollar spent. He sees improved patient education—better knowledge of their medications can lead to better compliance and less cost down the road—and physician education as important parts of reform.

(As another personal side note, check out this recent Boston Globe article on major changes in consumer education being proposed by the FDA. )

As he mentioned earlier, drug innovation is another essential component, as are policies that help patients who need medication access affordable prescriptions.

* * *
Any type of consensus involves different parties with different agendas, priorities, and perspectives. Getting them altogether is the first step; seeing results that accommodate everyone’s needs is much more difficult. Be sure to check out the Summit Conversations and hear what David Y. Norton, Tommy Thompson, and a diverse group of other panelists are saying about health care reform.

Blog Rally To Help the Boston Globe

2009-04-06T20:04:00.000-07:00

The threat of possible closure of the Boston Globe has been all over the news. As an avid daily reader as well as a freelancer who has written for the Globe, this news is deeply troubling. I first read on Running a Hospital how a number of Boston-based bloggers who care about the continued existence of the Globe have banded together in conducting a blog rally. We are simultaneously posting this paragraph to solicit your ideas of steps the Globe could take to improve its financial picture:

We view the Globe as an important community resource, and we think that lots of people in the region agree and might have creative ideas that might help in this situation. So, here's your chance. Please don't write with nasty comments and sarcasm: Use this forum for thoughtful and interesting steps you would recommend to the management that would improve readership, enhance the Globe's community presence, and make money. Who knows, someone here might come up with an idea that will work, or at least help. Thank you.

Please participate and spread the word!

National Young Adult Cancer Awareness Week

2009-04-06T07:14:00.000-07:00

It’s spring, which means the disease walk-a-thons, bike races, charity walks, and general awareness campaigns tend to kick into high gear.

As a rare disease patient, I watch these mobilizations with a mix of curiosity, appreciation, and intrigue. That these populations are big enough to sustain such events is, of course, a double-edged sword: so many people are impacted by them that there is strength in numbers, but that those numbers are so high is the very reason for the mobilization.

I had Rare Disease Day, and that was a start for me. People I love (or the people other people in my life love) live with all sorts of conditions, so I find myself sponsoring things like MS bike rides, arthritis or heart disease walks, or diabetes or specific cancer awareness events more and more. I’ve done the charity walk for Children’s Hospital Boston for several years.

But it’s the first year I’ve been aware of the existence of Young Adult Cancer Awareness Week, and I’m interested in it for many of the same reasons I wrote about for Rare Disease Day and many of the same reasons I wrote a book about chronic illness in younger adults:

This is a population whose needs are both unique and overlooked. There are thousands of types of cancer, but the larger universal experiences of getting diagnosed with it and living with it as a young adult are significant. From access to care and early detection to issues of employment and family-planning, these challenges affect so many younger adults across the country.

I had the chance to speak in person with Kairol Rosenthal last week, and it’s largely due to her advocacy that YAWC is on my radar this week. For a more in-depth discussion of young adults with cancer and the similarities they share with young adults with chronic illness, see my review of Rosenthal’s new book, Everything Changes.

When Things Go Awry: Making Sense of Medical Errors

2009-03-29T08:44:00.000-07:00

Per the prompt for next week’s Grand Rounds, I’ve been thinking a lot about medical errors and what they do to the relationship between patients and healthcare providers.

Fortunately, I’ve never been involved in the type of medical errors that make the news, like wrong-side surgeries, items left in body cavities after surgery, lethal doses of the wrong medicine, etc. Thankfully, no one in my life has ever experienced anything of this magnitude either. But for every major crack in the system that makes the news, there are many tiny fissures that chip away at its integrity.

In my 28 years of patienthood, I’ve collected my fair share of mishaps and errors: The time I was forgotten about for 20 minutes after a barium swallow test, suspended in the air with my oxygen out of reach several feet away. The time that I was transported to radiology for someone else’s head CT scan, despite repeated protests that my lungs were the problem. The time I woke up during lung surgery (in the recovery unit I’d hoped that horrifying feeling had been a dream. It wasn’t), or the time a loved one was woken up and ordered to take pain medicine that wasn’t hers. I’ll leave delayed diagnoses and altogether wrong diagnoses for another day, because they are more nuanced, less obviously categorized, and especially in the case of delayed diagnoses, less split along lines of culpability.

(And of course there are the minor infringements and indignities: The blood draws that take 3 different techs and leave 8-10 bruises. The CT scans that aren’t where they are supposed to be for pick-up, or the mix-up with test results. Vials of blood dropped on the floor, cultures whose results get lost somewhere in translation, paperwork that is not filled out correctly, bills that belong to other patients that end up on my account…)

Though it relies so heavily on science, medicine is a profoundly human institution, never more so than in those moments when things go wrong. And like most human interactions when things go awry, the reasons usually include pure unintentional accident (who hasn’t pressed the wrong button, misplaced a slip of paper, etc), basic incompetence (there is a learning curve to everything), and what I think are definitely more damaging to the relationship, indifference and pride.

Personally, I am less interested in dissecting what can go wrong than focusing on what to do when it happens. In the macro sense, this could include improved safety protocols (like the checklist before surgeries) and other institutional safeguards. But I’m coming at this from the patient perspective, so I will leave those discussions to others.

No, what I am talking about are the more immediate reactions, how we treat each other when things don’t go as planned. Mistakes will happen but the mistakes themselves are not usually what bother me or stick with me, it’s the way they were handled.

(I recognize, of course, that it is because I have never experienced a major, life-threatening medical error that I can focus on this aspect of things.)

For example, in the wrong CT scan scenario I mentioned earlier, I received two very different responses. The person doing the scan became angry when I repeatedly told her I did not need a brain scan (as forcefully as someone in respiratory distress could), and became angrier when the same thing was told to her from someone higher up in authority. A vulnerable situation—not being able to breathe has a way of making you feel powerless—was made even more so by the fact that my voice was repeatedly ignored.

But moments later, the attending doctor apologized, told me he’d make sure the “patient has altered mental status” comment would be erased from my medical record, and checked in with me later to confirm with me the correction had been made and to apologize again. That’s what I needed—a simple apology and more than that, assurance that the mess had been cleaned up. In the exchange itself, what I needed was a few seconds of listening, an extra minute to confirm my patient ID, or basic recognition that someone who is visibly not breathing well might be onto something when she says it’s her lungs that need checking. I needed to be treated as a person, not a nuisance and not as someone who has absolutely no knowledge or insight into my own body.

If the mix-up had ended when I first got to the room (the transport orderly stared at my ID bracelet for a long time and somehow declared I was the right patient and that the number matched the brain scan patient’s) I would not have cared. After all, mistakes happen, especially in a busy ER. My ID would have been confirmed, I would have gone to get the imaging I needed for my own care, and the patient with the brain tumor would not be wandering around the hospital. It could have been cleared up in a couple of minutes.

But that’s the difference between accidents (reading the wrong number) and events that are the result of indifference or pride. Generally I try to laugh off some of these mishaps; after all, they make a good story and after all, everyone makes mistakes. However, what makes me angry or makes me resentful are the times when the errors are somehow shifted back to me. Whether it’s a doctor, nurse or lab tech doing that to a patient, a teacher doing that to a student, or a boss doing that to an employee (notice the trend here that skews towards issues of balance of power and authority?), it doesn’t make it right and it always damages the relationship.

It’s the same with smaller things like not getting my test results because my blood vials were dropped on the floor, or my name was entered in wrong, or the person who needed to submit form X did not do so. Just let me know and take steps to fix it and I’m on board with you; don’t get irritated with me that you now need to do more work, don’t act like I am an inconvenience to you when I am the one who needs to re-schedule work to come back in for the same tests I just had the day before because of your mistake.

Like every interaction, there are two sides and two avenues for conduct. The way I respond inevitably impacts how the situation resolves itself, too. I can accept the apology or not; I can be calm and reasonable or not; I can differentiate between an unintentional mistake and arrogance or indifference or not. These are distinctions I hope to receive when I make mistakes and errors that impact those around me (students, clients, etc).

Every profession, every interaction between people presents an opportunity for errors. Obviously the stakes are usually much greater when it comes to medical errors, but the basic rules apply nonetheless: Treat people with dignity and respect. Focus on fixing the problem appropriately and moving forward. Be forthright. Sometimes the hardest thing to do is simply say “I’m sorry.” Yet for (non life-threatening) errors, those two words can mean the difference between a blip on the proverbial radar screen and an event that damages trust and fosters resentment.

Fragmented (or, the post where I come clean...)

2009-03-23T20:39:00.000-07:00

“I don’t like your body language. You’re not yourself,” was the first thing my doctor said as he entered the room. I was slumped in my chair, and I didn’t need a mirror to know I was pale and my eyes were ringed with dark circles. I did not jump up to greet him like I normally do, and I did not talk quickly or with animation like I normally do. Also, I did not contradict him; I didn’t like my body language, either.

(Apparently, this is what six months of virtually continuous infections will do to a patient’s posture.)

“What’s on your mind? You’re not yourself,” my husband said to me one night as I closed my laptop and stared listlessly at the television, trying to ignore the clutter of the “sick camp” that had taken over our living room: nebulizer and pill bottles fighting for space with stacks of research books, student papers, and half-empty mugs of tea. I was tired of typing while lying down.

(Apparently, this is what six months of virtually continuous infections will do to the coffee table.)

“Are you sure you’re alright today? You’re just not yourself,” my mother said to me in a quiet corner of an otherwise crowded baby shower. She delicately inquired if I was wearing any blush (hint: you need some) and pointed towards the table where I could sit. As I made my way across the room, more than one surprised person said to me: “Oh wow, you’re here. You never make it to showers or events.”

(Apparently, this is what six months of virtually continuous infections will do to my ability to be reliable.)

I do not have direct confirmation from the students I fear I have been short with, the clients and many others still waiting for responses from me somewhere out there in cyberspace, or the friends whose calls I’ve missed or plans I’ve cancelled, but I’m willing to bet they’d agree with this assessment that I am not myself.

Not to get all meta on you, but even here on this blog I feel as though my voice has been slightly off; more cursory and more willing to point you to other places for interesting material rather than being a destination for the discussion itself.

Now, as a general rule I find the term “not myself” a bit vague and useless—how can I be anything other than myself? But the point is well taken; I am not acting as I normally do (or talking, sitting, thinking, and basically getting through the day as I normally do.) I admit it.

For one, I am fragmented. This is something I hear from so many people right now, and I’ve noticed it on several blogs the past few weeks—people taking a break from blogging, or taking a break from commenting and reading, or disconnecting from everything for a bit because there is too much going on. Seems like so many people are taking on more projects and extra work with less time and energy to do it all.

In my world, the freelance deadlines, the huge research project, the class prep and essay grading, the student e-mails (and phone calls!) late at night and early in the morning, the presentations and speaking engagements, and the many other things constantly piling up equal working seven days a week. But I know that while the work details themselves may be different for others, the end result is the same: we’re all being pulled in several different directions.

Usually, though, I thrive on this kind of juggling. This is how it’s always been, and I’ve always thought of it as multi-tasking, not being fragmented.

So what’s different? I just haven’t had the energy to fully engage in most of the things I need to do. “It takes so much energy to simply get through the day and get home that there’s nothing left for anything else,” I told my husband.

I’ve been blaming it all on the long winter here in Boston, sort of joking when I do. But it’s the truth—no winter is ever good for me, but the months from September through right now have been an unusually bad few months. Nothing exotic or hugely interesting, which is why I’ve been hesitant to write about it much, just one infection after another after another after another. Ad infinitum, it seems. In almost seven months, I’ve gone a whopping nine days between infections.

(I’m tempted to say I have the immune system of a gnat right now, but knowing little about gnats, I’m worried that may not be as helpful an analogy as I’d hoped.)

Again, none of this is unexpected in people like me; for whatever reason, this year has just been more virulent. (Ha! Pun somewhat intended). And it took me several months to see for myself how much of my energy was diverted away from other things in my life and consumed by fighting off infections.

So maybe it’s not that I’m fragmented so much as I am currently doing too many things for the altered supply of stamina I have.

Or am I splitting hairs here?

Anyway, I think things are turning around (ignoring the 30-degree weather today, of course). I’m starting to feel better, and my doctor and I have an official plan to try and get me through the next few months. Oh, how I do love me a good plan. I am encouraged by this, and I am confident I can get past the nine-day mark soon. I am not as stressed by the pile of things to do because I’m actually able to chip away it.

And winter? It’s officially over. Now I just need the lungs to get the memo, and we’re all good.

I’m back.

(Apparently, this is what two virtually continuous days of feeling okay will do for a soul.)

Thanks for waiting.

What You Eat and How You Feel....

2009-03-18T08:30:00.000-07:00

What’s your cooking personality?

I took a quiz in the NYT’s Well blog recently and my results were a mix of healthy and innovative, meaning I like to experiment and rarely use recipes, I enjoy using fresh ingredients and spices, and I rely a lot on fresh vegetables and healthier proteins. The point of the post was to discuss how strong an influence the person who buys and prepares food has over household consumption, which I find interesting as well as totally logical.

(I should add here that several days into a lingering stomach flu, I am taking a huge leap writing and even thinking about food. Pedialyte and tea is more my speed right now.)

Anyway, in my more normal solid food state, we have a team approach to buying and preparing food because we both enjoy cooking and we each have complementary goals: I want lots of greens, lots of fiber, and a lot of heat; my husband is especially particular about preparing quality proteins and is always looking to try new preparation methods and new combinations.

Our meal planning has evolved a lot since we first met and started cooking gluten-free; since then, I’ve eliminated dairy and gotten a lot more adventurous, and we’ve both become committed to eliminating processed food. If I think about that in terms of the article on cooking styles, I’d say we’ve both influenced each other’s meals, though in different ways.

I realized our overall grocery store expedition can be boiled down to “Lean proteins, preferable whatever’s on sale, and vegetables.” In addition to lots of herbs and spices, we have lots of vegetable and chicken stock on hand, as well as bulk quantities of quinoa, brown rice, polenta, and risotto. As long as there’s some olive oil and garlic in the house, we’re set for the week and can do many different things with these core ingredients. (Of course we buy other things to supplement breakfast and lunch, but this is the crux of it.)

I found myself telling one of my doctors this last week after a strategy session to map out a way to control my dubious immune system and lungs these days. He was very interested.

“Do you notice you feel better when you eat certain things and worse when you eat others?” (Keep in mind, “feel better” in a lung doctor’s office means, “How is your breathing?”)

I mentioned that I gave up dairy voluntarily to cut down on mucus congestion and that I could tell it made a difference on the very rare occasions I’ve eaten it since: I am much more wheezy, and I cough a lot more. But beyond that, I haven’t really thought about how specific foods may or may not influence inflammation in my airways. I’ve been so focused on the macro—put good things into your body, and hopefully good things will happen.

So my new challenge is to be a more conscious eater, to slow down and think about how I feel and how I am breathing after different meals. It takes time and effort to eat gluten-free, whole foods and keep it economical; if I can parse out added benefit for my lungs themselves, then that’s great.

What about you? Have you noticed you react differently to certain foods (excluding any food allergies/intolerances, of course)? And if you take the quiz, don’t hesitate to share what your cooking personality is!

* * *

In other health-related news, I’ve written before about the effort America’s Agenda Health Care Summit Conversations is making to bring consensus to health care reform. Now, there’s a way you can participate in the movement as well. They are sponsoring a virtual marchto let Congress know how health care costs affect your daily life. You can join the Facebook page, send a photo of yourself, and tell your story. We can’t all be in Washington, but this is one way to get your voice heard. Check it out!

Happenings from Around the Medical Blogosphere

2009-03-12T08:05:00.000-07:00

It’s been a week of just-getting-by here at A Chronic Dose, but there’s much to report from different corners of the Internet.

My colleague and diabetes blogger extraordinaire Amy Tenderich of DiabetesMine recently announced a contest that proves yet again why her site is one of the most respected and influential around:

The 2009 DiabetesMine™ Design Challenge, an online competition to encourage creative new tools for improving life with diabetes.

It’s pretty simple—if you have a great idea for a new web application or innovative new medical device to help manage diabetes, you could win a grand prize of $10,000 to help make your project a reality.

According to Amy’s site, “The contest is open for submissions from March 2, 2009, to May 1st, 2009, at 11:59 pm Pacific time. Winners will be announced on Monday, May 18th, 2009.Submissions are accepted in the form of a 2-minute video to be uploaded to the DiabetesMine YouTube channel, or a 2-3 page written “elevator pitch” plus supporting graphics, also to be uploaded online.”

For more information on rules, other prizes, and judging criteria, be sure to check out the design contect page at DiabetesMine.

As Amy says, let the innovation begin!

* * *

Speaking of innovation, Alexandra Carmichael of Cure Together just announced the release of the first crowdsourced book on endometriosis. Endometriosis Heroes: 137 Women Share Their Experiences and Treatments is available here.

March is Endometriosis Awareness Month, and sites like Cure Together and Jeanne’s Endo Blog (and many others) are working tirelessly to promote understanding and awareness.

* * *

And lastly, innovation of another kind—an unusual perspective in today’s climate of economic woes, layoffs, and general anxiety. One of my all-time favorite voices and people in the medical community is Paul Levy, CEO of Beth Israel Deaconess Medical Center here in Boston and blogger at Running a Hospital. Check out this Boston Globe column about the way Levy has approached potential layoffs at the hospital, and the amazing response from his BIDMC community. Empathy and sacrifice have replaced self-preservation at the other people’s expense, and it’s something we can all learn from, especially these days.

Who's Your Mentor?

2009-03-08T15:29:00.000-07:00

Today was a much-needed break in Boston—the sun was shining, the snow was melting, and from my perch in sick bay, it was possible to believe this long, punishing winter has an end in sight. October-May are a total wash for me typically, and with DST this weekend, suddenly June doesn’t seem so far away.

I’m sick of being cold and sick there’s not much else say about it, and I’ve had enough writing about health and health care reform for at least a few days, so we’re taking a spring break and talking writing and mentors today.

I read Penelope Trunk’s blog, Brazen Careerist, regularly. From advice on job interviews to musings about gender in the workplace to things I’d never know about venture capital and start-ups otherwise, her material is always informative and usually very entertaining as well. (I love some snark when it’s combined with authenticity and intelligence.)

Anyway, one of her recent posts was about finding a good mentor—in fact, it is called “Get Your Next Mentor By Being Slightly Annoying.” I read this post a day after I’d given a presentation on publishing and social media to nonfiction students in Emerson College’s MFA program. The timing was uncanny, because one of the things I told the students was to be “politely persistent,” to have the confidence to follow up several times and to keep putting yourself out there no matter how many rejections you get. Whether it’s trying to nail down a mentor, as in Trunk’s case, finding an agent, or landing a piece in a big-name glossy, I think the premise remains the same.

(As an aside, here’s a more extreme example of “polite persistence”: I was wait-listed for a competitive program I fully believed I deserved to be in. What can I say? I was young, and suffered from a mix of naiveté and hubris. Every other Monday for the three months in between the wait list notification and the time the letters of acceptance went out, I mailed the dean of admissions a letter that talked about what I believed I’d gain from the program and what I hoped to contribute, and included new published materials each time. I got in, and joked they were simply tired of seeing my return address.)

But the blog post made me think about things beyond matters of persistence—namely, the importance and value of mentors.

I thought about my high school journalism advisor, who sacrificed countless evenings and weekends to help us put out the paper. But she did so much more than that for me. She exposed me to writing conferences and competitions that gave me confidence and concrete goals. Above all, she helped me find a voice—an identity, really—in a world often dominated by my illnesses. Finally, I had a constant. A decade later, few people have had more of an impact on my life and my choices.

I thought about my college journalism professor, who encouraged me to apply for the internship at a national newspaper and quite literally brought issues of ethics, morals and professionalism to our class through her personal experiences (she knew Woodward and Bernstein) and the dynamic speakers she arranged. It was her true passion for what she did that most influential; not many people I know are as deeply committed to and energized by their careers than she is. I didn’t want to disappoint her.

That’s what great mentors do, I think; they challenge us to be better people and better professionals by virtue of their own accomplishments and their integrity. It’s more than simply teaching us skills or dispensing advice.

I am lucky that in this latest stage in my life I continue to have incredible mentors, like the cousin who reads every draft of every major project I do, who taught me the language of grant-writing and research proposals and whose perspective has informed my work in so many ways, or the agent who does much more than negotiates contracts and submits my work but invests himself fully in my ideas and advocates for them.

We talked about the “hidden curriculum” of medicine in my classes this semester, the knowledge learned in hallways and during anecdotal exchanges—lessons that do not occur in the traditional med school classroom. Part of the discussion involved those role models who may not even be even aware they are serving that function. Now more than ever I recognize how many people like that are in my world—what may be just a link or an introduction or a passing idea on their part opens up a whole new avenue of possibilities. For someone like me who is still learning and expanding what I do, that hour-long lunch, that really wonderful phone call, or that amazing talk really can have a lasting impact, and plays a part in the choices I make and the goals I strive for long after the fact.

Long story short: Yes, persistence is a huge component of success in any field, but having people who are willing to share their time and expertise is, I’d argue, just as valuable. For as long as you keep evolving personally and professionally, I think you never outgrow the value of a mentor.

Do you agree?