New Year's Notes from Sick Bay

As some of you regular readers know, New Year's has special meaning for me. Four years ago this evening, I met the man who would become my husband. I had also just gotten out of the hospital again, and that winter marked a turning point for me in terms of diagnosis and treatment. Since then, every New Year's that I'm not in the hospital or acutely ill is a milestone.

Healthwise, I've come a long way since then.

We've come a long way since then, and each year we mark each New Year's with a special dinner or celebration.

Not this year. He's bedridden with a stomach bug that has left him dehydrated and weak, and I've come down with another respiratory infection. So we're spending New Year's in sick bay, armed with tissues and tea cups, our fancy dinner out likely replaced with chicken broth and ginger ale.

We were at a wedding this past weekend--an especially lovely and joyful one--and the "in sickness and in health" sentiments are fresh in my mind. Eh, so we won't have expensive wine and good food. Who cares. At least we're in the trenches together--and since neither of us are in the hospital, it's still a good end to the year yet.

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Speaking of being in the trenches, the December Pain-Blog carnival is up now at How To Cope with Pain, including an entry from A Chronic Dose. During the last week of each month, the best posts of that month are highlighted. New bloggers are always welcome to contribute. There's plenty of good reading and tips to start 2008 off the right way!

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A Chronic Dose has been nominated for the 2007 Medical Weblog Awards for Best Literary Blog (my little MFA heart is fluttering just a bit at this) and Best Patient Blog. It is an honor to even be nominated and stand next to such high-quality sites, so I thank you very much for the nod. Voting for the finalists begins Jan. 8th.

News, Updates, and 2007 At a Glance

Before I take a brief look back at 2007, here are some recent headlines to think about as we move towards 2008.

The relationship between Pharma and physicians is a complicated and often controversial one, and I’ve noticed a lot of media coverage about it recently. Check out this Slate article about off-label prescription use—it pits the instinct of the physician against the “industrial-government-insurance complex of medicine's last quarter-century” and is an interesting read, especially if (like me) you’ve been prescribed medicines for off-label uses before.

In a different angle of the Pharma-physician phenomenon (oh alliteration, how I love thee), this Boston Globe article discusses tough new policies limiting the amount of interaction and influence drug companies have with doctors at UMass Memorial Medical Center. Sounds promising, but its feasibility is a consideration.

Now that I’ve taken stock of the last week’s headlines, it’s time to reflect on some of the headlines that have appeared on this site. Perhaps this retrospective indulgence is merely that, but with a tiny bit of hindsight, I think I would categorize 2007 as a year of awareness—of being aware of how chronic illness affects those around us, of being aware of what others are going through and what lessons can be taken from that.

There have been ridiculous tales of medical mishaps and comic calamities (okay, I will stop with the alliterative abundance here, but who said anything about assonance?), and plenty of new voices who have made me laugh and impressed me with their grit.

There have been moments of profound grief, at once intensely personal and wholly universal, as well as moments of humility in the face of someone else’s pain. I’ve realized how much I owe the healthy one in my marriage, and how precious timing is when it comes to the people I love.

I’ve looked at books and the process of storytelling itself for inspiration and understanding. I’ve had some personal highs and I’ve only been in the hospital a few times, a different kind of personal high indeed.

From gluten wars to medicine and politics, it’s been a busy year for acknowledging and understanding disease and its many manifestations in our lives.

May you all have a happy and healthy 2008!

This Old House (The Body Edition)

I spent much of the day yesterday on a train to New York (because obviously the only thing more sane than moving three days before Christmas and becoming displaced for three weeks is squeezing in a last minute business trip the day before said move, but it was well worth it. When have I ever been known to do things in any sort of logical, tempered manner, anyway?)

I was wading through some research for a project I’m working on, but despite how interesting I found Kleinman’s theory of sociosomatic illness (and I really did), I couldn’t string together two coherent sentences on it. For one, my body was achy and tired from packing boxes, stacking them, and packing some more. My brain was whirring with logistical details—movers, lat minute requests from our buyers, Christmas gifts that needed purchasing—that kept creeping into my highlighting and note-taking routine.

But more than anything, the New England coastline makes for a pleasant distraction. The only thing I found more enjoyable than looking at the icy waves and scenic vistas was looking at all the different types of homes that dotted the shoreline.

True, I have moving on the brain, but I have always been fairly obsessed with old houses. This train ride gave me plenty of chances to feed my fervor. Really, is it surprising that the structurally defective girl likes houses with wonky hardwood floors, sloping corners, and squeaky joists? No sparkling new boxy Neo-Colonials with their pristine, virgin floors and sensible open floor plans for me. If there aren’t systematic idiosyncrasies—or what I prefer to consider charm--I’m not interested.

Part of this is situational. I grew up spending the summers on Cape Cod in a neighborhood where most of the houses were grand rambling affairs, circa the 1700 and 1800s. Most of the places I’ve lived in the city have been old—in Boston, this comes with the territory—with crooked angles, oddly shaped windows, and steep staircases.

One of my goals in life is to someday own a house with a turret. As long as the turret is accompanied by a creaky old front porch for Scrabble playing, my husband is on board with this. But besides the geographical aspect, I think I just have a more finely attuned appreciation for large-scale quirkiness.

My middle fingers have broken so many times that sometimes they just get stuck in the bent position and it is impossible to wrench them straight again. When I am fading, apparently my left eye doesn’t open as much as my right one, a bizarre little factoid my husband uses to gauge my energy level. I routinely get high fevers for no obvious reason. I can predict changes in the weather by the thickness of my lung secretions, and I’ve been known to grow bacteria not normally found, oh, say, in North America.

And when it’s humid out, my curly hair actually grows more horizontal by the minute (I have witnesses), just like a real, live Chia pet. Good times.

I’d like to say that like the old houses I adore I have good bones; however, we all know that would be an outrageous lie. But like an antique Cape coming out of a long, stormy winter, I like to keep things…interesting.

Thank goodness my husband likes long-term maintenance projects.

And turrets.

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In all of the holiday madness, don’t forget to swing by Medgadget to cast nominations for the annual Medical Blog Awards.

Food Allergies and Famous Bedfellows

I haven't written about celiac disease or related food allergy issues recently. (Remember that three week stint of chicken broth, pureed food, and sparking water with a straw? That made it pretty easy to avoid gluten or dairy.)

Liquid diet aside, I haven't had too much to say about living with dietary restrictions. I've figured out ways to make home recipes tasty and safe, and I've learned what--and more importantly, how--to ask when I'm dining out. (Remember that whole selling one place and buying another? That transaction has certainly cut down on our dinners out, anyway).

But for everyone out there who is gluten-free, dairy-free, or suffers from any type of food allergy, I do have something to report. This week, Ming Tsai, nationally known chef and local celebrity and owner of Blue Ginger, was at the Massachusetts State House with his son, who has suffered from multiple food allergies, to urge legislators to pass a bill that would make dining out a lot easier for patrons and employees alike.

I’ve eaten at Blue Ginger, so I can vouch firsthand for its highly acclaimed food. It was one of the more memorable meals we’ve had. But I can also vouch for the fact that when I informed the waiter about my condition, he snapped into action, heading back to the kitchen and returning with a list of appetizers and entrees that were completely gluten-free. He also said that in the future, if I give the restaurant 24 hours notice they can usually prepare something special (and safe).

I was impressed with the service and the thoroughness, not realizing at the time that Ming Tsai is the national spokesperson for the Food Allergy and Anaphylaxis Network (FAAN). I found out later that he keeps a sort of “Bible” of recipes and ingredients in his kitchen, even including the ingredient lists for whatever prepared foods (think soy sauce) his dishes may require.

I think it’s great that such a well-known chef is putting himself out there and advocating for awareness of food allergies and dietary restrictions. The real story, though, the one that affects so many people who don’t live close enough to Blue Ginger to bask in its food-safe abundance, is the bill itself. It would require restaurants to:

--Prominently display a poster about food allergy awareness in a staff area
--Put a notice to customers on the menu that it is their obligation to inform their server of any food allergies
--If the restaurant serves 50 or more, obtain a master list of all ingredients used in each recipe that is available to the customer upon request

For more details, check out the language of the bill here.

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.

I spent a lot of time in a hospital cafeteria over the past week, and each entrée and side dish had all the ingredients listed, including a bolded section that highlighted any of the major allergens, like dairy, nuts, soy, wheat, etc. It made such a difference, and the fact that I was able to zip through the line without pointing and asking about every item made it a lot more effective for all the non-restricted people in line, too. Win-win situation all around.

The key here is knowledge—people can do so much more when they have the right facts at their disposal. Not every restaurant can be a Blue Ginger, but with the right basic protocols in place, they can certainly be as prepared.

’Tis the Season...?

I’m spending the day in the hospital, waiting for someone I love to get out of a long surgery. I came prepared—laptop, headphones, research I should be doing, and of course, several glossy magazines. (What can I say? Distraction is the best antidote for worry). I noticed a definite theme running through all of the magazines—this is the season for stress. There were tips on stress-free shopping, stress-free entertaining, stress-free family functions, and stress-free travel.

It made me think of a recent post I wrote about stress and illness and the tenuous relationship between the two.

Just in case I haven’t already hit you over the head with it (let’s be serious, if you’ve read the other post, you know my position), I believe in the distinction between stress causing illness and stress exacerbating illness. As in, stress did not cause the genetic respiratory condition responsible for so many hospitalizations—my suspect genes did. As in, stress did not make me cough for 17 hours straight and go into respiratory failure, but 20+ years of the wrong treatment for the wrong disease certainly contributed.

Did stress play a role in making the infections and recovery worse? Sure it did. Stress takes energy away from recovery. I’ve seen stress make diabetic blood sugars skyrocket, I’ve seen stress make arthritic joints ache with more severity, I know this relationship is a strong one.

As firmly entrenched in my position as I am, my husband said something the other night that gave me pause. In speaking with someone else about my health, he mentioned that I was much more stable the past few years because of the lifestyle changes I’ve made. “Your schedule in college would have made the healthiest person run down and sick,” he said.

He had a point. In college I worked anywhere between 30-40 hours a week on the campus newspaper (usually from 5pm till the middle of the night), got up early to fit in five courses a semester, interned another 15-20 hours a week, and did lots of other random stuff. I was either running around on 3 hrs of sleep and heavily over-committed, or I was an inpatient.

For three years now, I’ve proudly asserted that the reason I am in the hospital less often and for shorter periods of time is because I finally have the right diagnoses for several of my health problems. I’m getting the right kind of preventative treatment (daily chest PT), I’m on the right medicines, I’m seeing a doctor who specializes in what I have. I’ve stopped the vicious cycle, and better understand how to cater to my persnickety lungs and deficient immune system. I firmly believe if I hadn’t gotten this diagnosis and wasn’t doing all these things, I’d still be making trips to the ICU. It surprised me that my husband hadn’t factored this into his conversation. To me, it is all the difference in the world.

And yet, I have made a lot of lifestyle changes. I don’t survive on three hours of sleep per night (adrenal failure makes that one pretty impossible). I am not so desperate to prove I am not sick by taking on too much. I’ve made sacrifices and compromises both financially and professionally to ensure I am not in that vicious cycle again. I’m trying to set myself up now for a future that while promising, is not as certain as the present.

So there is some truth to what he said, certainly. I’m not sure I would have made those changes, would have matured in the same way, if I hadn’t had the diagnostic breakthroughs. But I also believe 100 percent that if I were still living my life the way I used to, I would be sicker. I’d be more run down so infections would hit me even harder. This is not wisdom or enlightenment so much as it is common sense, and I think it applies to anyone, regardless of health status.

(And yet if I were to run into a certain doctor from my past today, the tiniest part of me would want to tell him: It’s the holiday season. My grades are due in two days, and two huge freelance projects were due this week. I just sold one house and bought another (its own unique brand of home inspection-acquired stress) and my life is half-packed, the boxes stacked and ready to move three days before Christmas (good timing, much?). My computer died in the midst of the major deadlines, I’ve had the plague since sometime in July, and someone I love is having invasive surgery as I type. If I were to pick a stressful couple of weeks, it would be these.

And yet I am breathing just fine, thank you. Stress, huh.)

But of course I wouldn’t say it. I would nod a hello and go on my way, my indignance tempered by gratitude that at least I now know what’s wrong, and I know what choices I should make to keep me well.

Seven Random Things

Last week I was tagged by Dayna at A Bug's Life and Barbara K at In Sickness and In Health for the "7 Random Things" meme. I am getting to it a few days later and I am studiously ignoring my husband's little smirk that says "Only seven random/weird things? However will you narrow it down?" but I am getting to it nonetheless.

With no further delay, seven things you wouldn't necessarily know from reading this blog:

1. I once broke my finger when someone hit my hand with a balloon. Yes, a balloon. When I rock my bone density scans, I am the only one there under 80. Good times.

2. I have an amazing capacity for monotony--when writing my book, I listened to the same song on repeat. Six days a week for six months. I only changed it once for half of a song and when I did, I couldn't string a sentence together.

3. I spent a year studying at Trinity College, Dublin and while there, I went spelunking off the west coast of Ireland, near the Cliffs of Moher. See #1 on this list to understand why my relatively unscathed return from this trip was momentous.

4. I was a competitive figure skater (solo and precision team) for several years when I was in grammar school. Again, see #1 on this list and pretty much any random entry on this blog to see why that could never end well. I had heart, but my various plaster casts made for some lopsided spins and jumps.

5. I went to an all-girls' Catholic high school run by nuns. Instead of bells to signal the beginning/end of class, we had classical music. If you hadn't arrived at your next class by the last violin strain, you were in trouble. Looking back, this seems really weird to me, but at the time I thought that was how everyone did it.

6. My mother wanted me to be a Latin teacher when I grew up. I was kind of a Latin dork. I got perfect scores on the National Latin Exam and spent surreptitious weekends in May competing in the state Latin/mythology championships at the behest of the little nun who taught my high school Latin classes. My brothers forbade me from telling anyone this. I've forgotten a lot of what I knew then, but every now and then an arcane mythological reference comes to me or some Latin idiom crosses my mind and I realize I am still a dork.

7. I'm extremely competitive and I am a terrible loser. My husband and I have a running Scrabble competition--I am up 37 games to 32, but who’s counting? Whenever it looks like I am going to lose, he claims I suddenly get "really tired." Lame of me, I know.

According to the rules, I must now tag seven other bloggers:

Girl, Dislocated, because she is hilarious. And has broken waaaayyy more bones than me!

I'd Like to Buy a Bowel, because she is also really funny, and brings new meaning to toilet humor

Rickety Contrivances of Doing Good, because she is so creative and reflective

Sick Girl Speaks, because she is incredibly wise. (She also just published her own book and I had the pleasure of reading it!! Wonderful work, Tiffany!)

Sick Momma, because I think she'd have really interesting entries for her list of seven things

Fluent, because I think her arm is better and I'm hoping she's up for it!

A Medical Mystery, because she's really honest

Here are the rules:
1) Link to the person that tagged you, and post the rules on your blog.
2) Share 7 random and/or weird facts about yourself.
3) Tag 7 random people at the end of your post, and include links to their blogs.
4) Let each person know that they have been tagged by leaving a comment on their blog.