Thursday, December 31, 2009

Looking Back, Looking Forward: 2010

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.

Thursday, December 24, 2009

Making it to Christmas

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!

Friday, December 18, 2009

Books Make Great Gifts, Part 2: Personal Picks

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.


(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

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!)

Thursday, December 17, 2009

Thyoliday Blues and Truths

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.

Wednesday, December 16, 2009

What Better Gift Than a Good Book?

Last night at my writing group, a friend asked what we would do if Christmas was a time where we had permission to buy what we really want for ourselves. What, she queried, would we buy?

“Books,” I replied, without a second’s hesitation. Literally, it was the first thing that flew out of my mouth.

And it’s true, though with a caveat. I’d also like time, time to wander through my local independent bookstores. I’d linger over the new nonfiction titles and the paperback originals, I’d wander past the front-of-store displays and hit the aisles, looking for new names and titles.

(I’d also check out the health section to see Life Disrupted, because I’ll be honest, the thrill of seeing it is still there, and I’d try to guess what shelf will someday house Book #2 .)

I’d buy more narrative medicine books, and the engrossing narrative nonfiction titles I love so much. I’d select the breezy, snarky novels I can tear through in an hour, and the literary fiction books I re-read over and over before I go to sleep at night.

And then once I had as many books as I could carry by myself, I’d hunker down with my dogs and the afghan my grandmother (the most avid reader I've known) knitted for me, and I’d do nothing but read. No Internet. No clients. No writing. Just time to savor other people’s writing.

So consider this ode to books (and bookstores) a friendly holiday reminder that books make wonderful gifts. Last year, I gave you some personal picks and Best-of lists to consider, and for those of you who haven’t purchased all your presents yet, I thought I’d do so again.

NPR’s Best Books of 2009 is an extensive and eclectic resource, and it includes the Top Picks From Indie Booksellers.

I got my MFA in Nonfiction Writing and am a self-avowed nonfiction junkie, so I was excited to see Salon’s Salon’s Best Nonfiction Books of 2009. Still, I often need a break from true stories, so Salon’s Best Fiction of 2009 was another must-read.

The Wall Street Journal's Best Health Books of 2009 is another great list to consider.

As for my own list? I’ll own it: end of term grades, client work, research detours, looming word counts, and Christmas-related chaos have all conspired to slow me down, but I’m working on it, and will try to post it soon.

(Don’t forget Life Disrupted is an affordable gift for anyone you know living with chronic illness, or anyone trying to understand what their friends/family members are going through. Okay, obligatory holiday plug finished.)

Do you have any fiction or nonfiction titles you recommend? I’d love to hear them, especially since I haven’t started my holiday shopping yet!


Sunday, December 06, 2009

Learning To Be a Primary Care Patient

I do not subscribe to the saying, “There’s no such thing as a stupid question.”

There are many, many stupid questions. So opposed am I to the asking of stupid (by which I really mean unnecessary) questions that I go out of my way to acknowledge that a really good question is just that when I hear one. It’s a delicate balance, being accessible and approachable and trying to instill independent thought and accountability at the same time.

Asking to clarify a particular point in an assignment prompt? Totally valid question, and likely a question others have, too. Asking when that assignment is due, when that information has been available in four places, hard copy and electronic, for weeks? Less valid.

You might wonder what any of this has to do with primary care (though I did just have a long conversation about the culture of instant gratification and unwillingness to dig around for answers when it is so easy to text or e-mail someone to do it for you with a pediatric nurse practitioner in primary care, and she had a lot to say…)

I digress.

No, this post isn’t about the downsides of technology, or the ramifications of all kinds of information, vetted or not, being available with little effort on our parts. It’s about what happens when a rare disease patient enters primary care:

She asks stupid questions.

Guilty as charged. (See? Aren’t you glad I didn’t totally jump on my soapbox earlier?)

After years of floating between specialists, I love having a primary care doctor. More than that, I really like my specific doctor, and his whole group, and I love that my primary care doc and all my other specialists are all in communication with each other.

But I’m still learning how to be a primary care patient. I’m used to disasters and calamities; I’m used to avoiding the hospital merely because I already have all the equipment at home. So this week, when I had some progressively painful jaw symptoms that were likely something very minor, I was hesitant to make an appointment. However, with several dozen ear and sinus surgeries, a major mastoid surgery, and infections that have impacted my jaw bone several times under my belt, it seemed worth checking out.

The earliest appointment was two weeks away, or I could make an appointment in urgent care. I hung up without making an appointment, because this wasn’t urgent, and I didn’t want to take up an appointment slot when they are acutely ill patients out there. It is H1N1 season, after all.

I was told by several people I was over-thinking the term “urgent.” So I e-mailed my doctor, cringing at the knowledge I was now flooding someone’s inbox with a stupid question (remember, guilty as charged): should I just wait the two weeks, or make the appointment?

“Urgent” is all relative to me, to all patients with chronic or rare diseases. To me, it’s how much blood I am coughing up that makes me consider contacting my doctor, not blood itself. It’s how much lower my peak flows are, not just that they’re scary low, or how erratic my blood pressure or pulse is, not merely that they are erratic. I don’t go to the doctor every time I am sick because then I’d always be at the doctor. In fact, I try to avoid it, because I don’t need the exposure to other germs, and I’m at the hospital for tests and maintenance enough as it is. We have a plan set in place, and we follow the script unless things get very serious.

Of course, there are extremes to this, and times I should have gone to doctor and I didn’t (hello, trauma room, if only I’d avoided you) and times I erred on the side of caution and ended up wishing I’d just dealt with it at home like I normally do.

But the point is, for many of us, the baseline we use for “urgent” is totally skewed. I’m not totally sure how to behave appropriately in a primary care setting, but I’m figuring it out as I go.

My doctor assured me my question wasn’t stupid. Maybe the real issue isn’t that it was an unnecessary one so much as I simply didn’t know how to answer it on my own—my experiences didn’t speak to this kind of judgment call in a helpful way.

Luckily it’s not simply my call to make, and asking a professional made it a lot easier.

Anyone else out there been caught in this kind of over-thinking when it comes to “normal” health stuff?
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