The Evolution of the Mental Health Day

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It was like being a kid all over again. At night, I listened to weather reports and compared varying levels of expected snowfall. The words “snow day” danced around my head, tantalizing me. As soon as my eyes opened in the morning, I peered out the window and headed right to my computer to see if classes had cancelled. I felt the same rush I used to feel when I realized I did not need to put on my uniform and trudge to the bus stop…

…And then I plunked down at my computer and dove into work, excited that I had such an early start and that a whole day to catch up on projects and hopefully get ahead on others stretched before me.

Oh, how times have changed.

My snow-induced day of productivity was just what I needed, and made me think back to another hallmark of my childhood days, my mother-induced “mental health days.” Once in awhile, my mother would let me and my brothers take a day off from school just because. Think of it as a kid equivalent of a personal day. We could do whatever we wanted, whether that meant playing board games, watching television, or going out to lunch.

Considering how many weeks of school I missed every single year due to my illnesses, not everyone understood her rationale in allowing me to miss even more. Yet it was precisely because I missed so much school for unpleasant things—surgeries, infections that left me fairly lifeless on the couch, doctor appointments, diagnostic procedures and tests, etc—that it was even more important to my mother that I have a day every now and then where I didn’t have to think about school or sickness.

If it was important for the healthy kids to just take a mini-break from school and sports and extracurriculars (and it was important), then it made sense for the sick kid to get a break from her own realities, too.

Invariably, I never made exciting plans for my mental health days. Sometimes we got lunch at Friendly’s, other times we just watched Little House on the Prairie. Most often, I read books. Since whenever I normally had the chance to just hang out I was either feeling too sick to enjoy it or was too busy catching up on schoolwork, these simple activities were all I wanted or needed.

And reading a book on the couch or in my canopy bed, as opposed to the waiting room of yet another doctor’s office? Bliss.

Everyone I talked to yesterday who had a snow day or some sort of improvised telecommute commented on how welcome it was. After a hectic week of moving, unpacking, and getting over a fairly nasty infection, a day to catch my breath and take stock of what I needed to do was the best mental health day I could imagine. Nothing makes me feel better than knowing I’m crossing things off my To Do List and by last night, I was feeling so much better about facing the rest of the week.

True, what makes for a mental healthy day in my world has changed a lot since the days of Little House, but whether you’re sick or perfectly healthy, my mother was certainly onto something—an unexpected break in your routine can do wonders for psyche…And when you’re an adult, sometimes you just need a good old-fashioned snowstorm to force that break.

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Don’t forget the polls are still open over at Medgaget! If you’re so inclined, click here to cast your vote for A Chronic Dose in the “Best Literary Medical Weblog” category.

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Mental Health Days, Evolved

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It was like being a kid all over again. At night, I listened to weather reports and compared varying levels of expected snowfall. The words “snow day” danced around my head, tantalizing me. As soon as my eyes opened in the morning, I peered out the window and headed right to my computer to see if classes had cancelled. I felt the same rush I used to feel when I realized I did not need to put on my uniform and trudge to the bus stop…

…And then I plunked down at my computer and dove into work, excited that I had such an early start and a whole day to catch up on projects and hopefully get ahead on others stretched before me.

Oh, how times have changed.

My snow-induced day of productivity was just what I needed, and made me think back to another hallmark of my childhood days, my mother-induced “mental health days.” Once in awhile, my mother would let me and my brothers take a day off from school just because. Think of it as a kid equivalent of a personal day. We could do whatever we wanted, whether that meant playing board games, watching television, or going out to lunch.

Considering how many weeks of school I missed every single year due to my illnesses, not everyone everyone understood her rationale in allowing me to miss even more. Yet it was precisely because I missed so much school for unpleasant things—surgeries, infections that left me fairly lifeless on the couch, doctor appointments, diagnostic procedures and tests, etc—that it was even more important to my mother that I have a day every now and then where I didn’t have to think about school or sickness.

If it was important for the healthy kids to just take a mini-break from school and sports and extracurriculars (and it was important), then it made sense for the sick kid to get a break from her own realities, too.

Invariably, I never made exciting plans for my mental health days. Sometimes we got lunch at Friendly’s, other times we just watched Little House on the Prairie. Most often, I read books. Since whenever I normally had the chance to just hang out I was either feeling too sick to enjoy it or was too busy catching up on schoolwork, these simple activities were all I wanted or needed.

And reading a book on the couch or in my canopy bed, as opposed to the waiting room of yet another doctor’s office? Bliss.

Everyone I talked to yesterday who had a snow day or some sort of improvised telecommute commented on how welcome it was. After a hectic week of moving, unpacking, and getting over a fairly nasty infection, a day to catch my breath and take stock of what I needed to do was the best mental health day I could imagine. Nothing makes me feel better than knowing I’m crossing things off my To Do List and by last night, I was feeling so much better about facing the rest of the week.

True, what makes for a mental healthy day in my world has changed a lot since the days of Little House, but whether you’re sick or perfectly healthy, my mother was certainly onto something—an unexpected break in your routine can do wonders for psyche…And when you’re an adult, sometimes you just need a good old-fashioned snowstorm to force that break.

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Don’t forget the polls are still open over at Medgaget! If you’re so inclined, click here to cast your vote for A Chronic Dose in the “Best Literary Medical Weblog” category.

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Medical Weblog Awards

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I am very pleased–and quite humbled–to announce that A Chronic Dose was named a finalist in the Best Literary Medical Weblog category. To even be in the running with such wonderful sites is an honor, and I thank you very much. Click Here to visit Medgadget and vote. The polls are now open, so click over and cast your vote!

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About Antibiotics

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I know healthy people who say things like, “I don’t believe in taking medicine” or “I don’t like putting anything in my body besides aspirin.”

(These are frequently the same people who, when asked if they’ve ever been a hospital patient, are wont to say “Well, not since I was born,” causing me to shake my head in wonder. Who knew such people existed? And that I would one day marry one?)

My unspoken reaction is always “Good for you.” I realize how incredibly flippant that sounds, but I don’t mean it flippantly at all. It’s refreshing to be reminded that there are people out there—people in my life, even—who are healthy, who do not have any conditions that require regular medication.

I mean, who wouldn’t want aspirin to the only occasional remedy you need to live your life and get done what you need to do?

I will admit I am a bit blasé sometimes about taking medicine. I never skip a dose or anything like that, it’s just not something I think about. It’s something I just do, part of my daily routine for literally as long as I can remember. On a given day, I take no less than eight medicines (good times) and no more than fourteen (less good times). I have cut out four medicines altogether in the past few years, which pleases me.

I have tested and charted and experimented to make sure I am not taking any medications that I could do without, because just like my healthy counterparts, I really don’t like putting anything unnecessary in my body, either. I don’t like the never-ending co-pays, the refills, the side effects like a racing heart, dizziness, feeling jittery, brittle bones, enlarged organs, endocrine damage, etc.

But I dislike respiratory distress, respiratory failure and other phenomena even more.

Antibiotics are a regular part of my medical arsenal. And I do mean regular. In fact, they are indispensable. Remember that New Year’s Eve day infection? It got worse and worse, to the point where I was dizzy from not getting enough air, my peak flows barely registered, and all the nebs and chest PT in the world couldn’t cut through the infected mucus lodged in my chest. I basically didn’t leave my house for eight days.

The only reason I am even functioning at half capacity right now? I brought into rotation an antibiotic I hadn’t used in awhile. (Between the nature of what I grow and the fact I’ve been on them so long, there are only a few out there I can rely on). Even with them, I teetered on the edge of the hospital for a couple days, and without these antibiotics, I have no doubt I would be in the hospital right now.

Antibiotics are a hot-button issue. The big things I hear from my students and people I know in the trenches? They are over-prescribed, they are given to demanding patients or parents whose children have colds and viruses when they don’t need them, they are given to people who don’t complete the proper course of treatment once they start feeling better. In an age of multiple drug resistant bacteria, “super bugs” and emerging infectious disease, this is problematic, to say the least.

Believe me, I am just as worried about the misuse of antibiotics. Does that sound weird coming from someone who basically lives on them? I’m even more cognizant of it precisely because of how much I have to rely on them.

And yet because it is so normal for people like me to take them, I rarely stop and think about what I am putting into my body when I take one. It’s another part of the routine. But I should give them the respect for the formidable force they are. After all, look at this partial list of “less common” side effects for my current antibiotic:

“…Abdominal pain, abnormal dreams, abnormal or double vision, aggressiveness, agitation, anemia, angina, anxiety, asthma, back pain, blood abnormalities, blood clots, changeable emotions, chest pain, circulatory failure, colitis, coma, confusion, depression, difficulty in or obstructed breathing, difficulty concentrating, disorientation, dizziness, emotional or mental problems, exaggerated sense of well-being, fainting, fungal infection, gangrene or other infections, gas, genital infection and itching, hallucination, heart attack, heart failure, heartbeat irregularities, high or low blood pressure, high or low blood sugar, hives, impaired thinking, indigestion, intestinal bleeding, intestinal inflammation or blockage, irregular heartbeat, itching, kidney disorders, lack of muscle coordination, liver disorders, lung problems or inflammation, muscle pain weakness, pancreatitis, paralysis, pneumonia, rapid or slow heartbeat, rash, seizures, swelling of face or extremities, swollen tongue, tendon inflammation, tumor, vaginal inflammation, vertigo, vomiting, yellowing of eyes and skin…”

Yikes. A healthy fear is now officially instilled.

Along with a huge dose of gratitude that they still continue to do what I need them to do.

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The Measure of Choice…

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Read this Salon article, “The Baby I Turned Away.” Go ahead, click away from my page, read it, gauge your initial reaction to it, and come back to me. (C’mon, have I ever given you a bad reading recommendation?)

I couldn’t not write about this, but even after reading it a few times, sleeping on it, reading it again, wading through the letters posted, I’m still all over the map. Here’s what I’ve come up with so far:

Whether you think the author, Jessica Berger Gross, is a superficial “baby shopper” lulled by a romanticized ideal of India and motherhood or a woman who simply knew her limits and made the right choice (most reactions tended to split down these two lines), you have to respect the honesty here. It’s not easy to lay bare your most painful decisions, your fears, and your limitations, especially with such an emotionally charged issue.

I’m not interested in dissecting, praising, or bashing the author here. I’d rather explore the whole idea of choice. Choice, both within the context of this one article and in much broader terms, is a luxury. For example, the author had the option (read: financial security) to pursue an expensive foreign adoption. That alone is not something every person who wants a baby but cannot have one on their own can do, and she knows they are the “lucky ones.”

But so often the luxury of having a choice brings so many additional possibilities and consequences. In this case, the ability to pursue this adoption put them in the position to face tough, tough questions. As the author writes,

“I wished we were different people, the kind who would welcome this child, welcome the risks, with no questions asked. I wanted to help her, to make her OK. But what if I couldn’t? Could I love her anyway? To a parent, this question must be unthinkable. You love your child no matter what, accepting all limits and gifts. But we had a choice, and the magical thread that had spun us around this child for the previous two days was beginning to unwind and tangle.”

Ahh, the downside of choice. It forces us to confront our weaknesses, it shatters our perceptions of perfection.

Obviously I am approaching all of this from a different perspective than a lot of people who either applaud or condemn Gross. I’m not the parent of a special needs child, nor am I currently pursuing an adoption. But the whole idea of what is “normal” or “healthy” (Editor’s note: Go on and read this, too–it’s relevant to my position) and what happens when the future we envision is far different from the reality we inherit is an important one to me. And I think whether you’re talking about disease or developmental delays or emotional problems or whatever the special circumstance may be, it all boils down to the same fundamental debate.

What do you do when life doesn’t conform to your plans?

On the one hand, this sentiment from a Salon letter-writer, Late Again, gave me pause:

“Why would you CHOOSE something with so much heartache if you didn’t have to? Thank god there are people who do. But, really, most of us wouldn’t choose a difficult path given an alternative. The major advantage of adoption over biological birth is the notion of choice. Good for you all if you would check the box on the adoption forms that says “I’ll take anyone.” Most people wouldn’t. This is just one view…”

It’s a good point to raise in the discussion. Objectively, why take the harder road when you don’t have to?

But (and you knew there was a “but” coming) could you be cheating yourself out of unforeseen positives on that road? Could you be selling yourself and your potential to meet challenges short? I don’t know. There are a lot of parents out there who are much better equipped to speak on this, who have spent time in the trenches.

It’s tough. If I have a child, of course I wouldn’t wish for the child a life of sickness. Who would? (It certainly wasn’t in my parents’ plans for me, but then again, neither was all they have gone through and endured.) But I would be the first to say that that child’s life would be undeniably rich and fulfilling even in the face of illness. I’ve never had the luxury of health, not for one day on this planet, but I do not lament that things aren’t any other way.

The absence of choice is just an important facet of this discussion. You can’t always control the human body—who can conceive and who can’t, what diseases can be prevented or detected early and which ones cannot; you can plan for and hope for and expect good health (and all the accoutrements that loaded term brings) but that does mean it will happen, or that you have any say in that.

Sometimes you roll with the punches, and you do not have a choice. Challenges present themselves, even ones you want no part of, and somehow you meet them and keep on rolling. But if you’re lucky, you’re too busy living your unscripted life to even notice what you can or can’t choose.

Pragmatically, not everyone is this lucky. I know that. While I do not have many answers or conclusions, just lots of questions and speculations and thoughts that clearly run in circles here, I know at least one thing. I, too, am one of the lucky ones.

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New Year’s Notes from Sick Bay

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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.

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News, Updates, and 2007 At a Glance

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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!

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This Old House (The Body Edition)

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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.

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Food Allergies and Famous Bedfellows

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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.

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