Gluten-Free Dining, With a Side of Controversy

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A couple of years ago, I wrote about proposed legislation that aimed to increase food allergy awareness and ingredient familiarity in restaurant kitchens. Championed by superstar chef and food allergy advocate Ming Tsai, the proposed bill would also ask restaurants to put a notice to customers on the menu that it is their obligation to inform their server of any food allergies.

At the time, I wrote “As customers, it is our job to advocate for ourselves, ask questions, and disclose relevant information, just as it is the responsibility of servers and kitchen staff to try to answer our questions as thoroughly as possible and accommodate us as much as can be reasonably expected. This bill makes that process a lot easier.”

And I still strongly believe that. Between understanding and preventing cross-contamination to keeping a master list of all ingredients, such moves make the dining experience easier for both the customer and the wait staff, who would have access to a lot more information when customers inquire about the menu. It’s about shared responsibility.

Imagine, then, how pleased I was last week when I saw this update in the Boston Globe about how the Mass Department of Public Health plans to implement these changes this summer.

(And, coincidentally, having just dined at Ming Tsai’s Blue Ginger again recently, I can vouch for how stress-free and relaxing the experience it is when you know your meal is safe.)

Perhaps I am just naïve, but what I was not prepared for were the angry, ignorant, and vitriolic comments readers left at the end of the article. Sure, there were comments that applauded the measures and saw the potential, but I was shocked at how many were so passionately awful about it. For some, it seems that any legislation, whether it directly affects them or not, is anathema and is yet another example of the “nanny state” liberal politics in Massachusetts.

Whatever.

Here’s the rub: if you don’t have food allergies, you don’t have to ask any questions, and nothing about the food you would have ordered anyway will change. This bill isn’t an iteration of Big Brother and won’t dictate what you eat, it will simply make it safer for others with food allergies to order food, and will make it easier for kitchens to share information about their ingredients.

Others complained that waiters will have to now explain the entire menu to everyone, or that the private sector should not have to cater to people with food allergies with the government looking over their shoulder.

Huh?

Only people with food allergies and specific questions about dishes will need explanations, and if that’s not you, why do you care? And if someone in your dining party has allergies, why would you begrudge that person his or her questions?

I just don’t see how training kitchen staff on clean cross-contamination measures or having a comprehensive list of ingredients on hand is forcing the private sector to cater to us.

I’ve lived with a diagnosis of celiac disease for six years and I’ve learned a lot about how to eat gluten-free. Through trial and error, I’ve also learned how to eat out safely and with confidence. I love it when places have GF menus, but I don’t expect them. I go out knowing the risks and am fully responsible for them. I alert my server of my issue and ask questions politely. I’m not demanding, and if all I can eat is a salad (and that rarely happens these days), I am fine with that.

I don’t expect staff to cater to me, and I don’t get bent out of shape when it turns out there isn’t much to eat. That’s the risk I take when I go to restaurants without GF menus.

But what I do expect? I expect that when I ask a few simple questions, the staff will be able to answer them. I expect that when I am expressly told something is GF that it truly is safe, and hasn’t been cross-contaminated. Implicitly, that means the kitchen understands that telling me something is GF means they’re telling me I won’t get sick. If this bill streamlines this process for all parties involved, that’s great.

Fortunately, my risks are not potentially life-threatening the way they are for others with severe food allergies. I take them extremely seriously, but if some uninformed waiter serves me food that contains gluten, I will be sick for a few days. It’s unpleasant and unnecessary but in the immediate moment, it won’t kill me.

Others aren’t so lucky. Is it really that inconvenient to make sure the people preparing the food know what’s in it?

My personal favorite of the comments went something like this: Shouldn’t people with allergies know that?

We’re not under any illusions our dining staff should be responsible for diagnosing us. We’re well aware of our situation and that’s why we disclose any allergies and ask questions.

I was once on a plane with a man who was outraged he couldn’t eat peanuts on the flight because someone on board had such a severe allergy he/she could experience anaphylaxis from being near them. He didn’t even have peanuts; he was incensed that someone’s life precluded his right to eat hypothetical peanuts.

Yikes.

To all the angry, put-out people out there, perhaps if they were to develop food allergies they would refrain from eating outside their home. But if they are ever in the position where they want to be social and go out to eat and what they eat could hurt them, I hope for their sakes they receive the correct information.

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Give and Take

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Selena at Oh My Aches and Pains is hosting the next edition of Patients For A Moment, the patient blog carnival.

In the spirit of Valentine’s Day and all things related to love, she posed the following question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I’ve been thinking a lot about those two words, love and hate, and how they figure into my perspective. After careful consideration, I don’t think either of them are the four-letter words I’d choose to describe my life with chronic illness.

Certainly, they are a part of my life. I’m not trying to pretend otherwise.

For instance, I don’t like when I have to miss things or cancel much-anticipated plans or let people down when I am sick. I dislike how overwhelmed I get when things are acute and work and frustration and guilt pile up, and I cannot take anything for granted, including the small things healthy people wouldn’t have to worry about. I don’t like that my first intact childhood memory is from a surgery when I was a toddler, and that I can mark many holidays depending on which hospital I was in and for how long.

But even in the moments when all the varied losses seem like more, they are usually smaller grievances. Hate is too strong a word. Or perhaps there is enough resignation (or experience?) built in after three decades that it does not need to escalate to that point.

I love that despite illness I am doing many things I am passionate about and have created a life that is (too) full. I am fortunate to have found somewhat of a balance between what I need to do for my body and what I need to do for my mind.

I love that after 29 years of surgeries, infections, and setbacks I am in a relatively good groove with the best doctors available to manage my definitive diagnoses. I love that after 23 years of near-constant high-dose steroid therapy I have a break, and the highs and lows are much smoother.

I love that I am married to a person who sees me as a whole person and not a constellation of symptoms, whose compassion and selflessness is intuitive and instinctive.

I love that there are people who know me as a relative or friend, a writer or editor, a professor or consultant, but don’t automatically think of me as “sick.”

And I appreciate that when things are tough and crises occur, they do think of me as sick and understand my situation enough to know homeostasis will return at some point.

So if I had to pick other four-letter words to describe life with illness, mine would “give” and “take.” Illness takes away little pieces of the identity I’ve worked hard to build and I push back and reclaim them. Illness makes demands on me and those in my life and we acquiesce when it is prudent to, and move forward despite those demands we can.

I am no Pollyanna and I won’t pretend that I wouldn’t love to be healthy. But, I love that I do not have to hate my illnesses…that would be giving them too much.

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Getting Out of My Own Way

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I’ve noticed a pattern the past couple of weeks.

I have a lot to say. From following up on the issue of chronic illness and parenting to re-visiting that lofty January goal of balance to so many others things, I do not suffer from lack of ideas.

And yet, whenever it’s time to settle down and crank out a post, I end up reading. Sometimes it’s Penelope Trunk or Dawn Friedman, sometimes it’s Kairol Rostenthal or Duncan Cross or Sick Momma.

What can I say? I’m eclectic.

It’s not an issue of being too sick to write, like I am sometimes, nor is it an issue of competing priorities. (I think I’ve forsaken the idea of negotiating them right now, anyway.)

Instead, it’s idea overload.

And in a much more exaggerated way, the same thing is happening with what appears in my mind as full caps, the much longed-for and equally feared BOOK 2.

I’ve discovered something: I really love research. Getting lost in journals, tracking down archived information, furiously annotating books (and books, and books). Of course I love the writing part, but that was a given. The more research I do, the more I want to write, the more the ideas develop and complicate each other in ways I didn’t foresee.

But the past couple of weeks I’ve found that I’ve used research as a distraction, something tangible I can say I’m doing for the oh-so-demanding BOOK 2, something I know is important to the overall process.

But deep down I know I’m doing it because I have so many ideas in my head, so many images of what material I’ll add to which paragraph and which interviews will flow best, that I’m running in circles.

Now, I’ve tried to be proactive about this. I diligently schedule in daily chunks of writing time, even if it means pulling back-to-back 7-8 hour workdays on the weekend. I precisely list the topics I need to address on a particular day.

I even recently hired a research assistant, who is fabulous and competent and efficient. I make lists for her, and she skillfully completes the tasks and gets me the information I need.

(I know! It’s the best.thing.ever.)

And yet I remain trapped in my own head, word counts taunting me and stacks of research beckoning me.

One of my students wrote recently that the hardest part is the doing—after free-writing and just seeing what comes about is the best way she can eventually get around to her point.

I think that could be the solution. I’m so immersed in ideas that I’m hemming myself in. I need to let go and see what happens, with less analyzing what I need to write or should write and more barebones writing.

Letting go is never easy for me. (Seriously. Ask my husband when it’s midnight and I’m obsessing about something.)

So, deep breath. Write now, worry about structure and voice and perfection later.

At least I got this piece done. It’s a start.

Writers, researchers, and kindred control freaks everywhere, any other tips?

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The Importance of Being Useful

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I went in for a lung check-up the other day and something truly unusual happened: I was quiet. Well, of course I really mean my lungs were quiet, because it was a very early appointment and my lungs are tight and quiet in the morning and get progressively wheezy and junky as the day unfolds.

I’d never had an appointment so early in the morning without an acute infection making things noisy.

“I’ve never heard you so quiet,” my doctor said. (After we’d talked about my book research, my other jobs, his grant writing, and lots of other stuff, because he’s the best.doctor.ever.)

“Ah, welcome to the morning lungs. My physical therapist always tells me I have two sets of lungs with totally different personalities, the 6am set and the 6pm set,” I said.

We moved on to other topics, but as I drove home, I thought about the many different sides there are to any illness, and any patient. I can be a wheezing, hacking, choking mess at night when my therapist arrives, but if you saw me at noon on a good day you might not even suspect anything was wrong.

That got me thinking about the days before my diagnosis, when there was only one “lung personality”—out of control. There was no chest PT, no understanding of the causes of my inflammation and infection or the complicated ways in which many of my medical problems were intertwined.

A few months ago, I wrote this post on disappointment, and the importance of writing a new script for ourselves, even when we might not want to. But I now realize that sometimes it works the other way around: sometimes good things happen, and we change our script in ways that make our lives better…but that doesn’t make it any less of a transition.

I was elated when, after months of diagnostic tests and procedures and a lifetime of serious illness, I got the right labels, the ones that matched my actual experience of illness. I was no longer the mystery lung patient, dodging whispers of supposed noncompliance and literally living on toxic doses of steroids.

But as awesome as it was, it took me some time to accept it was real, this newfound clarity. It took months for me to believe my rigorous daily regimen would actually improve my quality of life, that “normal life” could be something other than the snippets of time that occurred in between prolonged hospitalizations. I thrived in my new life post-diagnosis, but a tiny part of me, the part still fighting for self-preservation, kept wondering when things would fall apart again.

That’s not to say things haven’t been hard or my health hasn’t deteriorated, but several years later, I no longer doubt things in the same way. I’m realistic about my situation, but I also do not expect calamity to be an automatic part of my life.

I am not defined by labels so much as aware of their power to both limit and liberate. Sometimes good things happen in unexpected circumstances and you just have to let go and allow yourself the chance to live out the new script. Of course my PCD/bronc diagnosis is just one example of many, but it’s the one that seems most illustrative to me today.

The other day, the always interesting and often controversial Penelope Trunk had offered this pithy bit of advice on her blog: “You should be useful to readers each time you post. It feels better. For everyone.”

That’s something I think about often when I post. So, readers, I guess the take-away from this extended anecdote is this, something I’ve said before:

It is not unreasonable to hope for good things. That’s true in all aspects of life, but sometimes when you live with chronic illness, it’s an important reminder…and hopefully, it’s useful one, too.

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Bigger Things

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I’ve been quiet lately, which is sort of surprising, given how fired up I was in my last post on chronic illness and parenthood. Thank you so much to everyone who commented; your insights on an emotional and sensitive topic were so honest, and started up a worthwhile conversation. I actually have several follow-up posts in various stages of completion, so stay tuned.

This week I can’t quite muster up the right words and phrases to balance out emotion and reason. Partly, I am sick. Partly, I’m adjusting to a new work schedule and deadlines. But more than that, I find writing about any of that feels trivial in comparison to what’s happening elsewhere, particularly Haiti. So much of living with and thinking about chronic illness emphasizes the “chronic” part—the ongoing waxing and waning of symptoms, the long struggles to find balance.

And then something catastrophic happens, and the implications of the word “acute” are crystallized. So I’m doing less writing and more reading. My home state (Massachusetts, which is getting a lot of press given a certain recent election and its implications on health reform) is home to the third-largest Haitian population in the country, but unlike many, I do not have any personal ties.

Instead, my introduction to Haiti came from the pages of one of my favorite books, one I’ve discussed before: Mountains Beyond Mountains. Tracy Kidder’s narrative tale about Dr. Paul Farmer and his transformative work in Haiti with Partners in Health captivated me and so many other readers, and when word broke of the massive earthquake, PIH and the already struggling public health situation in Haiti were some of my first thoughts.

PIH’s Stand With Haiti relief efforthas many opportunities to help, and with over twenty years of experience on the ground in Haiti, the team knows how to prioritize needs. Tracy Kidder’s recent post on the Haiti earthquake is also worth a read.

With aftershocks still threatening and continued delays in getting aid to those who need it, there is still plenty of urgency and many professional and medical organizations mobilizing support.

Daily life continues in our world, and headlines about political upsets dominate, but there are things happening that transcend state and national politics, blog posts full of minutiae, or the Conan-Leno fiasco. Sometimes it’s a matter of humanity.

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Color Me Riled Up

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My mother always said she could tell when I was feeling better because I had the energy to be riled up about something. Well, I’ve been free of acute infections for a whopping two and a half weeks, which is actually a December-January record for me, and it’s time.

I’ve written about pregnancy and chronic illness several times, and from different angles: can versus should, the waiting game, etc.

The decision to carry a child, use a surrogate, pursue adoption, or remain childfree is intensely personal and depends on so many variables: disease progression, diagnosis, finances, health insurance, religion, culture, etc.

I completely understand and respect women/couples who, given their particular health and life situations, decide pregnancy—and perhaps parenthood itself—is not for them. (I am focusing on this in relation to chronic illness; I realize these family-building decisions are incredibly complex absent chronic illness, too.)

But what bother me are the blanket generalizations that people with chronic illness shouldn’t have children because they will pass on their bad genes and/or because that child’s quality of life will not be what it could (should?) be if a parent is sick. I made brief mention of this in my Dear Thyroid post, but didn’t get into detail.

You wouldn’t believe where I’ve heard/seen these types of comments: cocktail parties, wedding receptions, blog comments, etc. Usually, the people talking don’t know my situation; they’re just making sweeping claims in passing about things they really don’t know much about.

Internal monologue #1: It’s easy to be a smug 20-something guy two beers into a party and say you wouldn’t marry or have children with someone who’s sick, but let’s just hope for both your sakes that your fiancée isn’t one of the millions of healthy young women who will go on to develop autoimmune or other chronic conditions during peak marrying and child-bearing years. Internal monologue #2: You are only reminding me how incredible my husband is, so thanks for that.

Inheritability is a very serious issue, but there’s a huge spectrum of diseases, from those with a definitive test for direct inheritability (eg Tay-Sachs) to diseases with a genetic component (eg celiac disease). Medical experts have told us if we decide to have children, they are not at risk of being born with PCD. As for the other diseases floating around in my family’s genetic pool, yes, there are many. But considering 130 million Americans live with some sort of chronic condition, are there really that many people who can say things like heart disease, cancer, diabetes, or arthritis, which often have a genetic component, aren’t in their family history?

Want more on this? Please read an older post I wrote on genetic ignorance.

As I think about the second point, the quality of life issue, I am sidetracked by this NYT article on surrogacy. I found the article sensationalist and unbalanced, and was not surprised by many of the vitriolic comments that followed.

I don’t want to get too bogged down in a pro-con discussion of surrogacy and IVF, or the spectrum involved: one couple trying to have their biological child; egg donors; third-party arrangements, etc. But I’d like to point out that just as the majority of people undergoing fertility treatments are not Octomom, most people going through surrogacy are not 60-something, unmarried men who think it’s acceptable to bring bird feces into NICUs. (Confused? Read the article.)

In many ways, I see parallels between the mental illness issue in this article and chronic illness: who is qualified to make decisions regarding a patient’s fitness to raise children? Many people countered this article with comments like “Just adopt.” But I’m taking that phrase out of the context of the article, because it’s one people with chronic illness and/or fertility problems hear tossed around so often. (Cue pulse quickening and face reddening here).

See, here’s the thing. It can be incredibly hard for people with chronic illnesses to adopt. I can’t tell you how often I’ve heard that fear echoed by women with all sorts of chronic conditions. Also? Unless you’re considering the foster care system, which is a whole different conversation, adoption is often really expensive. In some states, and depending on health insurance, assisted reproduction is actually more affordable.

But more than that, throwaway phrases like “just go adopt” diminish what an incredibly emotional and difficult experience adoption can be for all parties. Yes, adoption can be a wonderful thing, but I’ve noticed it’s never the people who’ve gone through adoption who blithely proclaim, “just go adopt” like it is that easy, like it is simply a fallback plan. It’s usually the people who’ve never had to consider giving up a child or adopting one who make those comments.

So where are the in-depth, balanced, mainstream articles about adoption, articles that take a realistic (not sensationalist) look at what is gained and what is sacrificed? Why aren’t more people interested in eradicating disreputable or exploitive adoption agencies, the way we’re so quick to excoriate Octomom’s fertility clinic? (And for the record, reputable fertility clinics have this main goal: one healthy baby.)

Check out This Woman’s Work or Chronicles of Munchkinland for honest, insightful writing on the many benefits and drawbacks of open adoption from an adoptive mother and a birth mother’s perspective.

Similarly, there are those (again, usually those who have not lived with infertility) who say things like, “So can’t you just go do IVF?” And yes, many people with chronic illness can choose that route. But it’s emotionally and physically grueling (especially if you’re juggling other medical conditions), costly, and there’s also that little matter of no guarantee it will work. These are the realities patients who choose IVF accept when they make this decision, but to characterize IVF so cavalierly is really irritating.

Check out Relaxing Doesn’t Make Babies or Infertility on the Brain for honest, compelling writing about infertility, IVF, and loss. Religious and moral concerns aside (because they are many and varied, I know), can you read of such struggle and still say “Can’t you just go do IVF” like it’s as simple as getting a flu shot?

I have not delivered a baby or tended to the ever-present needs of a newborn while managing illness, and I am not currently in the process of adopting a child. But I am a person for whom these conversations are anything but rhetorical. I am not naïve, and as I’ve written in Life Disrupted and on this blog many times, I know that chronic illness complicates every single aspect of building a family and parenting a child. It requires a lot of planning, preparation, and yes, realism.

But to bring this full circle, let’s return to that quality of life issue. You see, this one I am qualified to speak about, because I am the child of parents with chronic illness, parents who were seriously ill when I was growing up and who continue to face challenges.

Yes, there were scary and sad moments, and yes, we all made accommodations for illness. But despite their sicknesses and mine, I had a wonderful childhood. When other kids had parents who wouldn’t let them play on travel teams or attend sleepovers because they simply didn’t want to drive them, my parents hauled us to hockey and figure skating, baseball and ballet—even when on crutches or chemo. They didn’t want us to miss out on anything. Even at the lowest points (disability and potentially terminal illness) they somehow made it work—we never doubted we were their priority, and they gave us every opportunity imaginable. Looking at things from an adult perspective, I am even more appreciative because I have a greater sense of the sacrifice involved.

So I’m a little sensitive when the topic of quality of life comes up, when I hear about how hard it can be for people with illness to adopt or hear passing comments about why people with chronic illness shouldn’t be parents. It boggles my mind the hoops people who aren’t “conventional” applicants must jump through in the adoption process, or the ignorance people who live with illness or must undergo infertility treatments (or both) can face. People who are fortunate enough to be healthy or to have no fertility problems don’t have these expectations on them, yet as we know all too well from headlines, simply being able to conceive and carry a child does not a good parent guarantee.

Some of the best parents I know just happen to have chronic illnesses. When I think of them, that is what comes to mind first: they love their children unconditionally, they put their children’s needs before their own, they give appropriate parts expectation and compassion to their children. I think of them as parents first, and patients second, and I think that reflects the way they live their lives: they are not defined solely by illness, and their children’s lives are not defined by parental illnesses, either.

To reiterate, of course there are situations where people decide their health problems are too overwhelming to add children to the mix. That’s a smart, responsible decision. But my point here is that it is a decision potential parents and their physicians should make, people with actual understanding of the factors involved.

(Cue stepping off soapbox. For now.)

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Looking Back, Looking Forward: 2010

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There are so many good year-in-review and decade-in-review memes out there already so while I won’t be joining in on them, I can’t let 2009 slip by without some commentary on it.

In my little corner of the universe, 2009 definitely had its high points: I signed a deal for my second book during a very tough economic spell, I met Bill Clinton and chatted about health care reform, and I pursued new academic and freelance opportunities. I am incredibly grateful for all of these experiences.

I thought and wrote a lot about hope this year, a word that is as closely related to these high notes in my life as it is to the low ones. In fact, I’d argue that when I felt fragmented and run down or when I was disappointed, when all I could do was focus on just making it work, hope was even more important.

I’m not into making resolutions this year. I’d rather take what I’ve learned from 2009 and apply it to 2010. Despite some really great developments, 2009 was a long, tough year, a year that pitted my strengths against my weaknesses in a major way. I am a planner and a control freak, and the more crazy life (and health) gets, my tendency is to push back even harder. I had a ton of pressure on me this year, and so much of what I needed to do hinged on me being able to control the one thing I can never fully control: my health.

In a much broader way, I think 2009 was a year that challenged so many of us on that front, healthy or otherwise: sometimes we can do our very best but other factors can dictate so much of our success or failure.

It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.

When I think about the past year and the past decade, I have to admit that some of the most important and life-changing developments were ones I never planned for, never even knew to look for: meeting my husband (six years ago tonight, actually); getting my MFA, meeting the friends in college, graduate school, and beyond who mean so much and who feel like family; starting this blog; etc.

There are many more examples like this, but the point is, sometimes you just have to be open to chance and possibility. All the planning in the world does not guarantee we will get what it is we think we want, and sometimes we don’t know what we want or need until we find it. At points this year I think I was so bogged down in surviving that I lost sight of the importance of the unexpected, that sometimes hope means trusting in what we cannot yet envision.

In this post, I reflected on the idea that a person needs three things: someone to love, something to do, and something to hope for. This is what I want to carry with me into 2010, and into the next decade.

Have a wonderful (and safe) New Year’s, and may 2010 bring you as much health and peace as possible.

Thank you for reading.

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Making it to Christmas

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I have a terrible track record with Christmas: I’m usually sick on the couch, sicker in the ER, or very very sick in an inpatient room.

But not this year. Now that it’s December 24, I can say that without immediately fearing I’ve jinxed myself yet again. What’s more, no one else is (seriously) sick, either. In 29 years, I can’t honestly remember when we’ve all been able to say that.

So for everyone who’s celebrating Christmas, may it be a merry and healthy (as possible) one. Let’s be thankful for the people around us, let’s be extra compassionate to the people who still have to spend Christmas in the hospital, let’s celebrate the new additions at the Christmas table this year, and let’s remember the people who should still be with us with love.

As I was reminded just yesterday, it is the season for hope.

Merry Christmas!

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Books Make Great Gifts, Part 2: Personal Picks

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So I can’t very well remind you that books make great gifts without giving you some recommended reading.

In an effort to expedite this post, and therefore expedite any remaining holiday gift purchases, this year I’m calling my list “Off the Top of My Head,” with the somewhat lame yet totally true claim that if I can remember a title at 10 o’clock on a Friday night after a long day, a long week, and a year full of reading and researching, it must be a memorable read.

Right?

(I’m still so fond of the book picks I suggested last year, so give them a second look if you’re interested. I think Abigail Thomas’s A Three Dog Life is one of the most exquisitely written memoirs I’ve ever had the pleasure of reading.)

Nonfiction (memoir, narrative, food, and health):
The Liar’s Club by Mary Carr
Truth and Beauty by Ann Patchett
Atlas of the Human Heart by Ariel Gore
Under the Banner of Heaven by Jon Krakauer
Word Freak by Stefan Fatsis
The Journalist and the Murderer by Janet Malcolm
Reading Lolita in Tehran by Azar Nafisi
In Defense of Food by Michael Pollan
It Must Have Been Something I Ate by Jeffrey Steingarten
Overtreated by Shannon Brownlee
Encounters with the Invisible by Dorothy Wall
Breathing for a Living by Laura Rothenberg
The Autoimmune Epidemic by Donna Jackson Nakazawa
Blood and Guts by Roy Porter
Keep Working, Girlfriend by Rosalind Joffe

Fiction:
Unaccustomed Earth by Jhumpa Lahiri
The Man of My Dreams by Curtis Sittenfeld
Best Friends by Martha Moody
Handle With Care by Jodi Picoult
Certain Girls by Jennifer Weiner
Something Borrowed by Emily Giffin
Dirty Girls’ Social Club by Alisa Valdes-Rodriguez
Olive Kittredge by Elizabeth Strout
White Teeth by Zadie Smith
The Year of Fog by Michelle Richmond
Commencement by J. Courtney Sullivan
The God of Small Things by Arundhati Roy

I’ll probably think of a lot more tomorrow, but I think that’s a wrap for now. As always, please chime in with more suggestions, or feedback on any of the books mentioned above!

Happy shopping…(and don’t forget: whenever possible, support local independent bookstores!)

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Thyoliday Blues and Truths

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Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

Have the holidays and your experience of them changed since you’ve been diagnosed?
Yes! In addition to thyroid disease, I have celiac disease, primary ciliary dyskinesia (a progressive, rare genetic lung condition), bronchiectasis (another lung disease), and other odds and ends. I’ve been sick since birth, but was not diagnosed accurately with most of these conditions until my early twenties. I used to spend weeks in the hospital every year, and spent several Christmases in a row in the hospital, including one Christmas Eve being transported from my hometown hospital to my large city hospital in an ambulance.

Now that I know what I’m dealing with and have different treatments, I’m not in the hospital as much. I’m still usually sick at Christmas, but I’m at home when I am!

What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
We used to have a big Italian feast with our extended family on Christmas Eve, and I loved my Nana’s baked stuff shrimp and my mother’s chicken parmesan. I was actually diagnosed with celiac disease right before Christmas one year, so that first holiday was tough but since then we’ve all adjusted. I bring a risotto dish that is now a crowd favorite, and there is always a protein cooked separately (and with no cross-contamination) for me. I appreciate the effort people make for me, and I like that I’ve introduced them to new foods they enjoy.

Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
Not really. Sometimes there is still some confusion about what is/isn’t gluten-free, but it’s never anything malicious—usually just someone telling me I can’t eat potatoes or rice when I can. There is a lot of serious illness in my family (and a lot of thyroid disease, too), actually, so we’re all sort of used to it. We just avoid asking, “How are you feeling?” at holidays.

How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
It’s such a busy, germy, chaotic time of year that I am usually sicker to begin with, so I need to keep those factors in mind and just pace myself. I do a lot of shopping online so I don’t have to be out in the crowds, and I make lists so that when I have the energy, I know exactly what I need to do and buy.

Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
Sometimes, yes. As I mentioned, the food issues can confuse people. My immediate family understands my other conditions well, but when you have very rare diseases, there is always a lot of education involved. People who don’t see me day to day might not understand how quickly I can go from okay to pretty sick, or just how many weeks an infection can linger. Conversely, sometimes I have a terrible-sounding cough but actually feel pretty good, and that can be confusing, too, I think.

Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
Yes! Christmas as an inpatient (or in an ER isolation room, or an ambulance) tends to have a dampening effect…

Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
It wouldn’t be a hate letter…more a letter of mutual understanding: I’ll do what I can for you, my slow-moving thyroid, and you keep doing your best for me.

If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It can be really difficult to diagnose—I think people think if one baseline blood test comes back “normal” the case is closed. Not true! I also don’t think people realize just how much the thyroid is responsible for, and how completely out of whack your body can be if your levels are not correct.

What is the greatest misconception regarding thyroid disease and thyroid cancer?
I think people sometimes consider thyroid disease a quick fix—you take the test, pop a pill, and that’s it. Now, while I like the fact that of all my conditions this is one where I can actually take a pill and it makes a big difference, it isn’t that simple. Patients need to monitor and maintain their dosages, and lots of things (other medications, certain foods, etc) can interfere with the correct dose.

What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
I’ve had doctors tell me that my lungs are bad because I’m stressed out or not taking my asthma medication (um, no, probably it’s because of the two progressive lung diseases, neither of which is asthma, but thanks!). I’ve also had people say really rude things about people with chronic illness in front of me, without knowing my situation: people who are sick shouldn’t have children, they would never marry someone who was sick, etc. Awkward! I usually just fume about it with my husband later.

Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

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