Engage with Grace this Thanksgiving

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

Engage with Grace: The One Slide project

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

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

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

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

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

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

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

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

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

Giving Thanks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Evolution of a Gluten-free Thanksgiving

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

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

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

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

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

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

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

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

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

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

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

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

Operation Frontline: Healthy Meals for Less

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

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

Gluten-free Eating on the Cheap

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Practicing Professionalism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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