Wednesday, June 24, 2009

Musings at the One-Year Mark

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.

Tuesday, June 23, 2009

Health Reform Updates

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.

Thursday, June 18, 2009

Is Soda the Next Big Tobacco?

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:

Wednesday, June 17, 2009

Update on the Clinton Blogging Event

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…

Tuesday, June 16, 2009

Talking Health Reform with President Clinton

“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.)

Thursday, June 11, 2009

Thank Goodness I Like Vegetables

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.

Wednesday, June 03, 2009

Great Expectations

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.
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