On Running and Chronic Illness–An Update

There are many reasons I decided to start trying to run. Notice how I phrased that—I am still such a novice that I can’t really say “I run” and am not even close to saying “I’m a runner” but I am almost 7 weeks into the C25K program and I’ll be the first to admit I am shocked at how much I love it.

Or to be more specific, I am pretty miserable during it, but I absolutely love how I feel when I am finished, physically and mentally. Each time, I feel stronger, I feel more confident, and I also cough up more junk than I ever have with any other aerobic activity, so I know it’s doing great things for my lungs.

Ostensibly, I first started training for a 5K because I signed up to do the MS Muckfest, a 5K obstacle course in the mud. I knew the actual running would be in fits and spurts as we moved through the obstacles, but I figured if I could run that amount, I’d be in good physical shape for the event. (I’m also combining it with strength training at the gym and Jillian Michaels’ Shred workout, to build up my core and arm strength.) The event is this Saturday, and while I have a couple weeks left in the C25K program, I definitely think it’s made a huge difference.

It’s hard, of course. The first week I almost laughed at the notion I could run more than a couple minutes without getting winded. Even though I’ve exercised regularly for years, my lungs burned the first few days. A couple more weeks in, I was logging longer running spurts but wondered when I could do a whole workout without getting a cramp from improper/poor oxygenation. I played around with when I took my inhalers and used my sinus spray, and looked for flatter routes so I could just focus on breathing—hills and speed can come in time.

Seven weeks in, I look forward to it. I still have such a long way to go but my goals are changing, too—I want to do a straight 5K event, but next summer, there is a 7-mile road race I’ve always thought looked fun. I am not fast and I am not graceful, but I now know if I keep plugging away, I will keep seeing improvement in my stamina and endurance. I cheered on runners at the Boston Marathon the other day, and was so inspired by their dedication and grace. I still can’t imagine actually running 26.2 miles (huge shout-out to my friend and inspiration, Audrey, who rocked Boston the other day and looked totally amazing when I saw her at the halfway point), but I can more easily understand why people do it.

The Muckfest was a good catalyst for running, part of it is also that running has always been something I just couldn’t do, and I hate that feeling. But it’s more than simply wanting to conquer something that has always challenged me. I explained it once to my husband as we finished a run together—that second wind they tell you about? It’s totally real. That feeling of just tying up my sneakers and taking off down the road? I have never felt more free.

A lifetime of illness, of surgeries, setbacks, crises, broken bones, etc., will shake your faith in your body. The disappointments tally up, and the sense of feeling hemmed in is profound. I am very confident in other aspects of my life, but my confidence in my body to do what I want and need it to, to depend on it, has always lagged behind. (With the major caveat of carrying a baby and keeping her safe—however rocky, my body did its job then).

So those are the reasons I started trying to run. The biggest reason I am planning on sticking with it? My three-year-old daughter. She watches us run and she puts on a headband and starts running around, too. She knows we signed up for an event and she asked to run a race of her own, and is now registered. (I am not sure which she’s more excited about—the actual running part, or the official race t-shirt she will get).

I don’t care if she ever runs a 5K, I don’t care what sport she ends up playing or if she’s ever the fastest or the first—I just want her to be confident, and to feel strong.

Pub Date Reflections, Paperback Release, Spring Events, (and More)

Thank goodness it’s April! While winter often felt endless this year, now that it’s finally spring and the illnesses and setbacks are behind us, I realize I need to post some updates about some great events lined up for the next few months.

Incredibly, a year ago today was the official pub date for In the Kingdom of the Sick. I more grateful than ever for the constant support, encouragement, and enthusiasm for the book and the issues it raises, for the press and publicity it received last spring, and the ongoing interest and opportunities to discuss these issues further. The paperback version of In the Kingdom of the Sick is set to pub this July, and I’m looking forward to more events, posts, and activities leading up to that.

On May 3, my friend Cheryl Alkon and I are presenting a session on writing nonfiction/health books at Grub Street’s Muse and the Marketplace literary conference at the Boston Park Plaza Hotel. It’s a wonderful three-day event “designed to give aspiring writers a better understanding about the craft of writing fiction and non-fiction, to prepare them for the changing world of publishing and promotion, and to create opportunities for meaningful networking.” I always wanted to attend when I was in graduate school and just starting to look for an agent, so I am really thrilled to be able to present.

If you’re in the Madison, WI area, I’m participating in a panel on electronic medical records at the University of Wisconsin-Madison on May 9. It is described as “a free public dialogue exploring electronic medical records (EMRs), a rapidly disseminating technology with great potential impact,” and is free and open to the public.

More locally, I’m participating in the “Connected Patient Panel: Exploring the Role of Online Patient Support Communities, Twitter Chats and Patient Advocacy” for the New England Society for Healthcare Communication’s Spring Conference (NESHCO). It’s on Thursday, May 15, 2014 from 12-1 pm at the Mystic Marriott Hotel & Spa, Mystic, CT.

And up next on the personal side? An update on my C25K training and thoughts on why I really like running—even if I am still a struggling novice.

Thanks again for all your support, and for listening despite the unintended silences!

On Running and Breathing (at the same time!)

It has been an extremely cold winter here in Boston (and from the sounds of it, so many places around the country.) Between absolutely frigid temperatures, a lot of snow and ice, and two rounds of viruses that lasted several weeks, I’ve had false starts with the Couch to 5K running program.

Wait, yes, you heard that right. I am attempting to run. On April 26th, my intrepid husband, brother, and some good friends are doing the MS MuckFest 2014 in Devens, MA., a 5k obstacle course in the mud. One of my brothers was diagnosed with multiple sclerosis six years ago, and my husband thought this would be a great way to show our support and would also be a great motivation for us to train together and do something together that is out of our mutual comfort zone together.

(Obligatory if completely sincere plug here: if you’re local and would like to join our team, we’d love the company! If you’d like to donate, you can do that, too.)

Now for some context, I actually really enjoy exercise and, illness and infections pending, I do it regularly. I’ve done years of ellipticals and Stair Masters, and more recently have really enjoyed classes (yoga, Zumba, hip hop, etc.) and home training workouts like Jillian Michaels’ Shred. It’s great for my mind and my stress levels, but pragmatically speaking, it is really important for people with PCD to move around and shake up these lungs of ours—ideally, this helps us cough and clear things out.

I am not at all athletic, but I have fun and I know my muscles are getting stronger, and know that is good for so many things. But I have never, ever been able to run. Ever. My chest tightens and I wheeze fairly quickly, and I get short of breath in a way I don’t in any other activity.

My goal is to be able to run a straight 5K prior to the obstacle course, because that would put me in pretty good shape physically and well, because I have never been able to run and I really want to be able to. Honestly, I am a little scared because for years I’ve told myself I can’t run, so it’s a big shift in thinking. I keep telling myself that lungs are muscles and though it might take longer than it does for other parts of my body to acclimate, and it might take longer than it would for someone without PCD and bronchiectasis, if I just take it step by step I can build up my lung capacity and train myself to breathe better when I run.

From friends and online forums, here are some basic tips I’m keeping in mind:

1. Start gradually—this is why an app like C25K makes a lot of sense to me
2. Breathe through your nose, since it warms the air and is better for your lungs
3. Cover your face in really cold weather, since the cold air effect is much more pronounced

Runners out there, what else would you tell a newbie like myself? And people with chronic illness and in particular, those with respiratory challenges, what helped you conquer the running demon? I appreciate any and all insights you have to offer!

Burnout…(And Finding a Way Back)

Now that things are settled down and more predictable after a long, hectic fall, I’ve struggled a bit to find my footing here. For so long, ideas and essays about living with chronic illness were natural and easy for me to develop: chronic illness and relationships; chronic illness and employment; chronic illness and pregnancy/infertility; and parenting with chronic illness, just to name a few.

More recently, the ideas aren’t so easy. Part of it is just plain old burnout, the inevitable physical and emotional fallout of the intensive process of researching, writing, revising, and promoting a book. If I don’t have a strong idea, I just don’t write. I can’t, so I wait until it feels right. It’s not an ideal way to keep up subscriber numbers and analytics, but it’s how I roll.

But it’s more than that, I think. I have a job, I have a writing career, I have a preschooler and a husband who deserve the best of me, I have family members with medical needs. The other spheres of my life take up so much of my head and my heart that there isn’t a lot of room left to talk about or think about chronic illness or to be a patient. This is partly possible because I am pretty stable right now and don’t have to deal with the major upheavals of my own hospitalizations and setbacks. It’s a lot harder to ignore chronic illness when its needs are immediate and non-negotiable.

Don’t get me wrong, illness is a part of my everyday life, from the crazy scheduling maneuvers to work in chest physiotherapy every day (or late at night, as it were) to running out of breath when I’m reading bedtime books to my daughter to the days when I just have no energy and wonder how I’ll last the long commute home. But papers still need to be graded, deadlines still need to be met, my daughter still has swim class, and the household still needs running. In many ways, I can’t afford to be slowed down by illness right now, and while I recognize such stability is borrowed time, I’m grateful for it when I have it.

Slowly, though, the ideas are starting to percolate again. I’m pitching ideas to editors. I’m posting here. I’m being more discerning about how much I say “yes” to and learning to say “no” more. Maybe they aren’t as personal and anecdotal about living with illness as they once were, but the ideas are there nonetheless. As a writer and as a patient, I’m just in a different place, but I’m starting to see that too is an inevitable thing, and I’m figuring out how to make these changing identities coalesce a little better.

Standing at the Edge of the Universe

It’s been almost three months since I’ve written, an unintended break that’s been weighing on me.

In August, a pretty serious health crisis happened to my father (and only a few months out from a kidney transplant, it was particularly complicated), one we hadn’t seen coming at all.

“It’s like standing at the edge of the universe,” one of his surgeons said to the two of us, referring to what would happen if we didn’t proceed with the major (and risky) surgery. And that one phrase seems to encapsulate the experience of acute, serious illness so well.

Overnight, my siblings and our spouses were whisked out of our daily lives and into waiting rooms and consultation rooms. The waiting, that is the all too familiar part—we have a routine now. We bring iPads and laptops, share phone chargers and delegate “to call” lists for updates. One makes coffee runs, another is responsible for cracking the jokes, another serves as the contact person for the surgeon and the floor. I usually take the pre-op shift so I can lay eyes on him before he is wheeled back; once he’s in recovery, someone else stays on later.

Since my father provides a lot of care for my mother, we split our time between his ICU and step-down floors and doing overnights at her house, and then after she too had surgery, we traded visits between different hospitals, rehab centers and respite care facilities.

More than two months after it all started, both parents are now home together and settling in. Both are recovering well, and have a renewed sense of hope and possibility.

There is much to say about this experience: the amazing opportunities medical science and premium health care offer, the stress of illness on families, how fortunate I felt I had siblings to help dig through the trenches. But for now, all I will say is we’ve pulled back from our perch at the edge of the universe, from the tense, draining unknown.

Things are calmer now, more predictable. I’ve found a groove with my courses, our new schedule, and lots of other changes. I hope to back here more regularly, and back at my usual writing spots like WBUR’s Cognoscenti and Psychology Today.

Thanks for hanging in there through the silence.

One and Only; One and Everything? (Or, Parenting after Infertility)

First there was Frank Bruni’s NYT essay on the gift of siblings, which was quoted, linked to and shared all over social media. It’s a lovely piece, and one that made me pause and really consider how much of my life experiences were and are shaped by having siblings, in my case, older brothers.

Bruno quotes writer Jeffrey Kluger, who observed that ““Siblings are the only relatives, and perhaps the only people you’ll ever know, who are with you through the entire arc of your life.” That shared history and familiarity can be a tremendous gift, and source of comfort.

Next came Lauren Sandler’s Op-Ed on being an only child and being the parent of an only child, a precursor to the release of her new book, One and Only: The Freedom of Having an Only Child, and the Joy of Being One. (It’s next up on my reading list.) In her article, Sandler takes on the misconceptions attributed to only children—that they are spoiled, selfish loners—as well as their parents, who must also be selfish, or care more about money or material goods than parents who have several children. She uses research to beat back these assumptions, and urges readers to consider the numbers:

“In hundreds of studies during the past decades exploring 16 character traits — including leadership, maturity, extroversion, social participation, popularity, generosity, cooperativeness, flexibility, emotional stability, contentment — only children scored just as well as children with siblings….only children are, in fact, no more self-involved than anyone else. It turns out brutal sibling rivalry isn’t necessary to beat the ego out of us; peers and classmates do the job.”

Lately, it seems like conversations about family dynamics and the decisions we make regarding family size are everywhere, and I find them cropping up all over the place in my own life, too. At two and half, my daughter is at the age where many of her classmates and friends now have younger siblings. All her cousins have siblings. Sweetly and innocently, she’s already asked me why she doesn’t have brothers or sisters. “Some families and bigger, and some are smaller,” I tell her. “What matters is that families love each other.”

When we’re in line at grocery stores, when I’m pushing her on the swings at the playground, or chatting with other moms, people ask me if she’s my first, if we’re going to have more. It’s a totally natural question, but if you’re parenting after infertility (and high-risk pregnancies) and/or parenting with chronic illness, it isn’t an easy or automatic question. It’s one I’ve been fielding since I was still pregnant with her. My response then was that I was focused on bringing this baby into the world safely, not future babies.

My response now echoes a similar sentiment. “We’re enjoying where we are right now.” After the long journey to get here, the fact that we have this happy, healthy little girl still blows our minds. Everyone responds to parenting after infertility in different ways. We never thought we’d be here, and some days it feels almost greedy or presumptuous or lacking in gratitude to assume lightning would strike twice like this. That might sound strange, but I wonder if some of you out there can relate.

What is a normal conversation for many other families, what is a natural progression in size for many families, is anything but for families with infertility or chronic illness (not that these are the only variables that make this complicated, of course—these are merely the ones that shape my perspective.) I wish this conversation was different for us, but that isn’t our reality. A few years ago, I wrote that the responsibility involved in making a decision like this—to embark on this high-risk road—was staggering. But really, the responsibility of being a parent in general is staggering, the competing considerations don’t get easier: We owe her the best of us, emotionally and physically. Siblings can be so enriching and wonderful. So are healthy (relatively speaking) parents.

It’s not an either-or situation, clearly, but what our responsibilities are to her as a toddler and young child and what she might want or need later are sometimes hard to navigate.

If she is an only child, I admit I sometimes worry about the misguided assumptions about only children as being spoiled or expecting the world to go their way, but I also know that her friends, relatives, and her experiences being in school, existing in groups, and generally learning to be social and empathetic. We’ve worked consciously to find a community, and communities within that larger community, where she will be supported and where she will feel connected to people beyond just the two of us. She calls her extended family and her gaggle of cousins “my people” and those bonds are incredibly important, and will be her shared history, too.

As I read Sandler’s essay and some related interviews with her, one thing that really struck me were all the negative labels attached to parents with only children—that their choices reflect selfishness or materialism, that they chose a small family so they wouldn’t have to deal with the chaos and inconveniences of more children, etc.

Maybe their choices reflect what is best for their individual family unit, and what allows everyone to thrive. Maybe it has always been their plan, their ideal social, economic, and philosophical situation. Maybe it isn’t their ideal choice, and the inability to have more children is a source of immense sadness. Whatever the reason, I don’t understand or appreciate the instinct to judge this choice, to assume negative motivations behind it, or to question the decisions parents make in terms of limiting their family size.

I know firsthand the many benefits of siblings. As a parent in a potential only-child family, I’m hopeful the benefits and opportunities of this path are enriching, too. I appreciate Sandler’s work and that she’s using research to speak back to these stereotypes—I wish she didn’t have to, though.

Making Order Out of Chaos

When I read Duncan Cross’s prompt for the latest edition of the Patients For A Moments blog carnival, which asks how we recharge, I was sitting in my home office. Stacks of bills and paperwork that needed to be filed took up most of the desk space. An assortment of mail, cards, and other mementos took up residence on top of the filing cabinet, patiently waiting to be stored more permanently. Folders filled with journal articles and research piled up in leaning towers on the floor, competing with books I need to read and review, files to read through for my teaching and research projects, and various stickers and drawings from my trusty little assistant.

In short, my home office reflected the state of my life the past several months—exciting and productive but incredibly intense and long, too. (Teaching an overload (4 courses), managing the pre-launch book tour and subsequent book tour, doing in-person book events and interviews, freelancing, helping out with care before and after my father’s transplant, etc.)

Having all these very big things happen all at once equals a lot of emotion, a lot of responsibilities, and very little sleep. My husband works weekends, too, and with some juggling the two of us we kept up with the basics: laundry, weekly cleaning (dusting/vacuuming/scrubbing), cooking, etc.

But the long-term stuff? The filing, the organizing of pantry and shelves, the sorting through drawers, the de-cluttering and boxing up of old toys and games? All that stuff slipped to the wayside. We were just trying to keep up with the everyday stuff; filing paperwork was just not a priority.

This all goes back to the central question Duncan Cross asks—what do we do to recharge when we are run down? After reading it, I ignored the looming deadlines, closed down my laptop, and spent some time organizing my office. The desktop was pristine. Each scrap of paper had its rightful folder. Each stack of folders had its rightful drawer. I felt a little less burnt out and frazzled.

For a moment, I debated sitting back down and tackling the deadlines, but something in me just couldn’t. I’d done that at the expense of so much for so long.

So then came clearing out all our drawers and closets, then the intense dusting behind and underneath the furniture, and I felt even less burnt out and frazzled. Then came the whole downstairs, too. A couple hours later, I flopped down on the couch, wheezy and exhausted, but it was the first time in so long I felt settled. Even though I was incredibly sleep deprived and getting over a sinus infection, I felt so energized.

While the examples are not always so extreme and time-consuming, I realized after the fact that putting my life into order in the midst of chaos is something that always makes me feel a little better. Even something as small as writing out a To Do list has the power to both calm and recharge me when I am a hospital patient and I am physically unable to make order out of the chaos.

After a 14-hour stint at the hospital the day of my father’s transplant, my husband made sure the house was clean and organized before I got home, because he knew it would make me feel better to have things orderly when I was in such an emotional state.

My office is now a sunny, neat place to get work done, instead of a omnipresent reminder of how frenzied the past few months have been, and putting more order back into the household makes me feel like I have more control over my life in general.

How do you recharge? What do you do when life and stress and illness start to spiral?

Navigating Work-Life Balance by Asking for What You Need (Part 2)

In this final installment of a week-long series on chronic illness and employment, we pick up where we left off: frustrated by her circumstances and her chronic conditions, Leah Roman had a huge choice to make. Just how much was she willing to sacrifice her health? If she asked for what she truly needed, what would that look like? Follow the rest of her story, in her own words. We’d love to hear your thoughts on her big decision.
 

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From August to October 2012, I dealt with a particularly bad flare-up.  As it had in the past, my flare incited my chronic hip bursitis.  The bursitis made it almost impossible to get up and down the stairs- a feat required of the two-train commute into my Philadelphia office.  There are 48 stairs just to reach the train platform in my suburban town.  After trying various strategies to accommodate the commute (e.g., traveling with my husband so he could carry all my stuff; using the SEPTA elevators-which are often hard to find and/or out of service), I always seemed to get the same result:

I always collapsed on the couch exhausted at 6:30pm.  I was too tired to make dinner.  I was too tired to exercise.  I was too tired to make social plans.  I avoided plans on weeknights because I was too exhausted from that day’s work.  I avoided plans on weekends because I needed that time to recover from one exhausting week before another exhausting week started on Monday.

After much soul searching, I decided to take the advice of a mentor who helped me adjust to a life with chronic illness.  She said, “Ask for what you need”.  So I did.

I needed a flexible schedule.  I needed a commute that was physically do-able, even on the worst day.  I needed to reduce my stress level.  I needed to feel more independent and get through my day without so much help.  I needed to get over my fear of working from home.

My biggest fear was that working from home would be isolating. Having a chronic illness is isolating enough and I often thought that going into the office (even with its challenges) got me moving and socializing when my instinct may have been to hide at home under the covers. I was also lucky enough to have my best friend in Philly work just across the aisle in our workspace. I got through many difficult days because we made time to have lunch together and she has consistently been one of my biggest cheerleaders. I was worried about the isolation of working at home without our lunch dates.

Even with these fears and uncertainty, I left my full-time position and started my own public health consulting business in January 2013.  I immediately felt relaxed.  With chronic illness, so much is out of our control. Now I could decide when to work and how much to work. I particularly enjoy the opportunity to control the message about my health and my recent work change.  No- I am not “too sick” to work.  Instead, I made a conscious decision to design an employment situation for myself that was balanced, enjoyable, profitable, and sustainable- flare or no flare.

Prior to January, I would drag myself out of bed at 6:30am- often with a poor night’s sleep due to one nagging pain or another.  My husband and I joked that he duct taped me together (i.e., collected my work bag, packed my lunch, found my keys) and shoved me out the door in time to catch the train.  By the time I arrived at my desk, I was exhausted!

In contrast, I am now well rested.  I sleep until I naturally wake up.  My morning starts very calmly with breakfast and conversation with my husband.  I’ve noticed that this calm morning carries into the workday.  I no longer feel pressured to work early “regular hours” like everyone else.  I work when my body is naturally energized (usually 10:00am-6:30pm).

I also use my flexible schedule to integrate exercise or errands into the day when I have more energy.  I initially worried that work from home would be too sedentary.  After all, I was used to a city commute.  So I wear a pedometer every day.  If I have not walked enough, I explore the neighborhood or utilize the wonderful indoor track in our town.  I also took this opportunity to sign up for joint-friendly aquatic classes offered at our YMCA.  The majority of these classes are offered during the “regular” 9-5 workday, so they were previously inaccessible.  As I slid into the pool on my first day and immediately felt comforted by the cool water, the instructor recognized the peaceful look on my face.  “The water,” she said.  “It is like medicine.”

These aqua classes have been a game changer for me.  First, they have been a wonderful way to exercise.  I feel no pain when I am in the water.  Second, they are a great way to socialize- which helps address my fear of isolation now that I’m working from home.  With my aqua classmates, I’ve certainly found my place among fellow exercise misfits.  We have a mix of older and younger swimmers.  Almost everyone has limited ability to exercise “on land” due to obesity or injury or chronic disease or age or arthritis.  I love this group of people.

Back home in my office, I relish in my privacy…especially if I have a bad day.  I can sit in my office chair or on the couch and pack my hips or hands in ice without drawing any attention to myself. I do not need to explain myself anymore.

Putting together this post, I realize that I am incredibly lucky.  I am lucky to be on my husband’s (very good) health insurance so that I can be more flexible with my employment options.  I am lucky to work in public health, which is an industry that lends itself very well to contract and consulting work.  My business has been busy since the moment I started in January.  I am lucky to have incredible friends, family, and colleagues that have helped me get my company off the ground.

And finally (in some ways), I’m lucky for this illness. I know so many people that work their whole lives before realizing that they had no work-life balance, were burned out, and missed out on an opportunity for a better life.  Having a chronic illness forces you to consider these questions early.  It forces you to put yourself first and it teaches you to be creative in finding solutions for change.

 

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Visit Roman Public Health Consulting, LLC, and make sure you check out Leah’s blog, Pop Health. Thanks so much for sharing your story with us, Leah!

The Flexitarian (or, Nutrition and Chronic Illness, Part 1)

In the wake of the book’s release, I’ve talked a lot about gender and pain. In a social history of chronic illness, gender and pain is indeed important to the storyline, but it is just one of many themes.

One question I’ve gotten is, what about the role of nutrition and lifestyle?

The short answer is that you simply can’t talk about how changes in the way we work, live, and spend our time—a recurring theme of industrialization and innovation—without looking at the influence of nutrition and diet. Some of the most common and costly chronic diseases, like cardiovascular disease and type 2 diabetes, are so closely linked to lifestyle. In many ways, this can be empowering, because it means there are concrete things we can do to prevent or mitigate conditions that don’t involve medication and intervention.

The longer, more complex answer is that of course, it isn’t always as simple and easy as that. Health literacy, socioeconomics, and many other factors go into it. (There is a much more eloquent discussion of all of this in the book, thanks to some insightful interviewees.)

People are incredibly passionate about nutrition and diet, whether it’s Atkins or Paleo or WFPB (whole foods, plant-based). I have celiac disease, so I know firsthand the power what we eat has in terms of improving our health. I’ve also routinely gone dairy-free; I am not lactose intolerant but cutting out dairy helps reduce mucus production. I know that eliminating certain foods can be incredibly liberating, and that even if you don’t have an allergy or food intolerance, choosing to eat a particular way can absolutely make you feel better.

To that end, I’ve been loosely following Mark Bittman’s “vegan until 6pm” mantra for a few years now, and over the past several months, I’ve slowly been adding in more vegetarian family dinners: butternut squash chili, peppers stuffed with quinoa and vegetables, garlic, cumin, and chili pepper roasted chickpeas (a toddler favorite—she has an eclectic palate), etc.

I don’t envision a point where all my protein sources will be plant-based, for pragmatic reasons. For example, my daughter loves salmon and we usually share a serving, so I wouldn’t want to cut that out, and I don’t always have the time to make separate meals. Sometimes, after a day of working, running around with a toddler, chest PT, then working all night again, it’s just easier to eat some (healthfully prepared) chicken, you know?

But still, I am definitely increasing my plant-based proteins and while I don’t eat a lot of processed foods (remember, I have celiac, and I don’t buy into packaged foods that are originally made with gluten and then are reformulated with GF ingredients), I am more conscious of selecting whole foods.

You can imagine my pleasure this week, when I stumbled upon Mark Bittman’s new column, The Flexitarian, and his measured approach towards a diet high in plant-based protein. While I am sure there are critics of the name itself, the philosophy here resonates since it’s what I’ve been gradually working towards on my own.

Interestingly enough, I read the column the same week I had the chance to interview Dr. T. Colin Campbell, author of The China Study and the forthcoming Whole. If you’ve heard of his work, then you know Dr. Campbell’s research suggests many chronic diseases can be either prevented or reversed through eating a whole food, plant-based diet. Keep an eye out for interview material and my thoughts on Whole–so far, it is engrossing.

I recently read an extreme comment on an article that said something to the effect of, nutrition is at the heart of everything and there is simply no reason for anyone to live with chronic illness. My gut response to that was, well, what about people with genetic or autoimmune disease? Would a change in nutrition suddenly grow working cilia for me? Or, isn’t it problematic to place the “blame” for lupus or multiple sclerosis solely on nutrition?

So as a preview of this discussion, I think you can acknowledge the enormous impact of diet on costly and preventable chronic disease without putting unattainable expectations on whole populations of patients. I also think that no matter what conditions you have or what causes them, the better you eat, the better you will feel, and I also think that conscious nutrition choices can do a lot to improve symptoms of existing disease.

What’s your gut reaction? More soon!

Battle for Grace

It’s already a big spring for books about illness. I’ve written about The Last Best Cure and In Sickness As in Health, and now I’d like to introduce you to Cynthia Toussaint.

In the course of writing about gender and pain for In the Kingdom of the Sick, I interviewed Cynthia Toussaint several times. A former dancer whose life was turned upside down when a ballet injury turned into a serious, debilitating pain condition, Toussaint is the founder of For Grace, a nonprofit for women in pain. Her experiences having her pain dismissed and her suffering ignored, as well as her incredible story of unconditional love, make for a compelling read in Battle for Grace, her new memoir. In fact, Battle for Grace launched on Maria Shriver’s Architects of Change site.

Here is some more official information about Cynthia, as well as Battle for Grace:

“Cynthia Toussaint is the founder and spokesperson of For Grace (www.forgrace.org), an organization that fights to ensure the ethical and equal treatment of all women in pain. She has fostered two California Senate hearings on thunder-treatment of and gender bias toward women in pain and gave testimony at both events. Toussaint has appeared on more than 75 local and national television shows and featured in over 200 news stories, including ABC World News with Diane Sawyer, PBS, Discovery Health, The Learning Channel plus the New York Times and Newsweek, among many others. A recent media highlight was an invitation from Maria Shriver to launch Battle for Grace on her Architects of Change website. Toussaint lives in Los Angeles, CA, with her beloved John…

Toussaint takes readers on an extraordinary 30-year journey where a crippling mystery illness triggered uncontrolled violence that almost destroyed her. The story begins with a minor ballet injury at age 21 that grew into the chronic pain disease, Complex Regional Pain Syndrome. Her pain went undiagnosed for 13 years as doctors told her it was all in her head. Bedridden for a decade, she was unable to speak for five of those years and was often reduced to the violence that attacked both herself and John Garrett, the love of her life. John has remained at her side for 33 years. She lost the career she’d dreamed of as an actor, dancer, singer, the chance to have a child and very nearly John as well…But Cynthia somehow stuck with it, refusing to be a victim. In her battle to survive, she’s taken on the role of activist and aggressively challenges HMOs and pharmaceutical companies that put the unholy dollar ahead of patient care…”

I am grateful for Cynthia’s insights in my own book, and pleased to share the details of her new memoir.