Summer Camp, Sick Style

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This won’t come as a shock to anyone who has read this blog before, but I was never a prime candidate for summer camp. (Or any sports involving physical contact, catching round objects, copious running, or inherent dexterity. In addition to a lack of natural talent, I broke too easily and coughed too much.)

In fact, I didn’t even like hearing those two words, “summer camp.” I watched the yellow buses wind through our neighborhood every morning, toting eager campers with lunch bags and bottles of sunscreen, and all I could do was thank God I wasn’t on such a bus.

My one and only bout with summer camp can be summed up this way: five-year-old me got released from the hospital after spending several weeks in an isolation room. A staph infection spread from my ears and was traveling towards my brain, so they shaved part of my head, cut it open, and drained it out. Good times. Lucky for me, I was released just in time to start Summer Session 2 at the day camp near my house. As it turns out, girls with partially shaved heads, IV bruises, and an assortment of meds and inhalers who aren’t allowed to go swimming or run around aren’t exactly popular.

(I should note that this wasn’t a high tech camp—swimming in the lake and running around were pretty much the only things you could do.)

Seriously, can I even blame the other kids—who’d been swimming and running with each other since the early days of Summer Session 1—for avoiding me altogether?

I lasted about two days.

I think the point in sending me was to re-acclimate me into the world of “normal” kids after so many weeks in isolation, but it just didn’t work. I was plenty social, but day camp took every weakness and insecurity I had and magnified them. My mother promised no more day camp, ever, and I spent most summer days playing with my cousins or friends on the beach or reading. When I was well enough to swim, I wore ear plugs and a nose clip and no one cared because they were used to it—or had been warned by their mothers not to comment on it.

To this day the thought of summer camp makes me a bit uncomfortable. I see plenty of kids who love it, and I am amazed by the variety—drama camp, dance camp, techie camp, music camp. Perhaps these specialized programs eliminate that whole notion of exposing vulnerabilities and sticking out.

“If we have kids, they’re only going to camp if they really want it. Like if they look it up and beg us and it’s totally their thing, ” I said to my husband recently, poring over the advertising supplement for summer camps in a local magazine. He was never a day camper sort either, so we were in agreement: if they want it, great. If not, we won’t force it.

Anyway, the whole point of this trip down memory lane is the fact that in addition to camps for sports and drama and academic enrichment and all of those things, there is a growing number of camps for kids with chronic illnesses. From well known conditions like diabetes and asthma to camps for kids with less common diseases like neurofibromatosis (and you know what a soft spot I have for the rare disease patients), there’s an emerging variety in options. And according to this article in the Boston Globe, these camps provide more than just a rite of passage:

“Now fledgling research suggests such special camps may offer more than a rite of passage these children otherwise would miss: They just might have a lasting therapeutic value.”

In addition to learning more about their conditions in hands-on and creative ways, children who may otherwise feel ostracized get to meet others just like them, which can be an incredibly valuable “normalizing” experience, one that can also boost confidence and self-esteem.

Who knows. Maybe if I re-wound the clock about twenty-five years and found a camp for kids with dodgy lungs, runny ears, deficient immune systems, and partially shaved heads, I’d have embraced the day camp experience with less terror. Maybe I would have even liked it.

Or maybe I would have still preferred looking for starfish at the beach and checking books out of the library. (Likely.)

But with so many specialty camps out there for aspiring singers, soccer players, and science stars, it’s nice to know that this generation of chronically ill summer campers have so many more options available to them, too.

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New Look, New Links, New Book Info

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Okay, so a real post—you know, cohesive thoughts, even the occasional insight—is coming shortly, but I did want to take a moment to point out some exciting developments:

First of all, you’ve probably noticed a completely revamped and streamlined site design, one that will hopefully make navigating A Chronic Dose easier and more efficient. Plus, it looks pretty.

A more important addition is the cover image of my book, Life Disrupted: Getting Real About Chronic Illness, which now has a permanent place on the sidebar and is also seen here:

Lastly, you’ll notice that the book is now available for pre-order sales. To order your copy from Amazon, click here now! Go! Place your order! I’ll wait.

And don’t forget you can read the advance quotes right here.

More book news is forthcoming but for now, stay tuned for that real post I promised above. Disastrous summer camp tales? Yeah, I’ve got those….

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Universal Health Care and Primary Care Problems

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So we’ve already established that patients like me are pretty much a primary care physician’s nightmare—complicated histories, hordes of specialists, all sorts of medications and symptoms to monitor. As I wrote a few months ago, though, some of those factors are the very reasons people like me need a good PCP, someone who can help coordinate the moving parts of disease management.

(As an aside, I have yet to find a group that is accepting new patients, but I’m going to renew my search now that a tough winter is over.)

Yet effective preventative medicine is the key to minimizing or even eliminating chronic disease, one of the most expensive and pervasive issues in health care. This is a given, and the logical extension of this is the idea that the more access people have to health care coverage, the better the outcome.

But theory and practice aren’t always as close together as we’d like. For example, here in Massachusetts a universal coverage plan was implemented several months ago. While costs have been significantly greater than previously estimated, a more compelling result is the one referred to in this New York Times article. In looking at the growing gap between urban and rural care, the article went on to posit this:

“Now in Massachusetts, in an unintended consequence of universal coverage, the imbalance is being exacerbated by the state’s new law requiring residents to have health insurance…Since last year, when the landmark law took effect, about 340,000 of Massachusetts’ estimated 600,000 uninsured have gained coverage. Many are now searching for doctors and scheduling appointments for long-deferred care.”

Of course, the fact that 340,000 patients are now covered is an encouraging one. But if one of the main goals of health insurance is to promote preventative medicine, how effective can it be if the patients who have lacked primary care medicine are unable to use their new insurance to see a physician? Or must wait months for an appointment?

Factors behind the primary care drought—lower salaries, educational debt, an aging population that demands more care—were already there. Add to that an influx of patients who all need the same resources, and it’s all too easy to see why doctors and patients alike are feeling the crunch:

“It is a fundamental truth — which we are learning the hard way in Massachusetts — that comprehensive health care reform cannot work without appropriate access to primary care physicians and providers,” Dr. Bruce Auerbach, the president-elect of the Massachusetts Medical Society, told Congress in February.”

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Some Life Disrupted Literary Love…

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It’s pre-pub time, when advance reader quotes and reviews for Life Disrupted start coming in and all of the sudden, the book that lived in my head and then in my laptop all these months is starting to feel real. To that end, the advance quotes that appear on and in the book are now available right here, so check them out!

I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!

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In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!

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In keeping with the writing theme, check out this week’s Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.

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What Makes a Meal…

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“Eat food. Not too much. Mostly plants.”

Clearly I’m not the first one to quote the opening lines of Michael Pollan’s In Defense of Food, or to see the logic in his argument that eating food is much different than eating the processed products that line most of the shelves in our grocery stores.

But I probably wouldn’t have been attracted to those lines—I might not have even read the book—if I hadn’t gone through such a major transformation in terms of what I think of as food and how it relates to health.

I thought about all of this when I came across a post from someone on a celiac listserv. The author said he would never go back to eating gluten, celiac disease or no, because his attitude towards food and cooking was so much healthier now.

I couldn’t agree more. I’d always been conscious of eating “healthy”—low-fat versions of everything I could find, heart-smart butter-like spread, even fat-free cheese (which, I admit, is an affront to the institution of cheese and consistently melted into an unappetizing pool of gooey yellow sludge. It was probably a subconscious part of my decision to give up dairy.) I bought pre-packaged, powdered low-calorie soups I added hot water to, convincing myself they made me full.

And then I was diagnosed with celiac disease and processed, pre-packaged foods were the first casualties.

Thank goodness.

I’m a label reader by proclivity as well as necessity, ever on the lookout for hidden sources of gluten in my foods. As such, I can’t help but notice how little time I now spend standing in grocery store aisles, poring over labels—after all, fruit, vegetables, fresh herbs, and meat/fish have pretty short ingredient lists.

Without being conscious of it while it happened, I became one of those people who, with the exception of canned beans and dog food, only shops the perimeter of the grocery store. Buying fresh, whole ingredients isn’t cheap, but since I’m not spending money on fake foods, the bill evens out each week. Now, we cook, rather than re-heat, a distinction I never would have thought about before.

Sure, I miss the sensation of biting into a toasted bagel, and the aroma of pizza baking can get to me. But going gluten-free forced me to look at what I eat, not just how much I eat or how many calories I ingest, and I wouldn’t go back to my outdated notion of “healthy eating” for anything. My life after diagnosis began as an odyssey of food exclusion, but I no longer see it that way.

After all, I take enough medications and put enough foreign chemicals in my body as it is. I certainly don’t need to add anymore into the mix.

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Mid-Week Reading: Shared Experiences and Health Social Networking

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It’s that time again! The March Pain-Blog Carnival is now posted at How to Cope with Pain, featuring the month’s best posts about living with chronic pain. New bloggers are always welcome to contribute.

Speaking of sharing insights and experience, I’m sure you’ve come across this New York Times Magazine article called “Practicing Patients.” It discusses PatientsLikeMe, a web community which “seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.”

For patients with diseases like Parkinson’s, MS and AIDS, real-time discussion and analysis of treatment methods, dosages, and relatives success can provide invaluable—and hard to find—information.

This has been a big week in the health social networking world—Healia.com, the health search engine I’ve written about before in conjunction with social networking, just announced the launch of Healia Communities. The site is “a free online health community that enables people to get personal support for their health decisions from peers and experienced health professionals … Healia Communities allows people to share their health knowledge, experiences and favorite resources; provide personal support and connect with people sharing the same health concerns; and get answers to their questions from health experts,” according to the press release.

More than 200 health communities exist right now, and a feature that distinguishes the site from other patient disease sites and groups that connect patients with each other is the additional access to health professionals who can also help answer questions.

What dedicated blog carnivals and online communities like the two mentioned above point to is the ever-increasing influence of technology over the patient experience, a vital exchange of experience and practice with the potential to do much to improve how we manage disease. Check them out and see if they are the right fit for your needs.

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Trends and Prevention

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“Trends” is a big buzzword in healthcare. As such, I can’t help but notice a trend of my own. Yes, it is Easter, and yes, instead of Easter brunch with the family, I am hunkered down on the couch, nursing a fever and infection.

Sound familiar?

Let’s review: Thanksgiving (freak infection spread to my jaw; dinner was consumed via straw); Christmas (nursed a cold but unlike many Christmases, wasn’t in the hospital); New Year’s (very serious infection that felled me for weeks). On the bright side, at least I haven’t had to worry about the traditional holiday food hangover the past several holidays.

There really isn’t more to rehash about this trend of mine except that it broke my 11-day streak of being infection-free, a personal record since early October. So instead, I’ll turn this idea of chronic disease trends outwards.

The Partnership to Fight Chronic Disease and the Milken Institute released a new study that puts the annual cost of seven common chronic diseases (cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions and mental illness) at $1.3 trillion.

Of that amount, a staggering $1.1 trillion is the result of lost productivity. Since I spend an inordinate amount of time trying to meet deadlines when I am sick, I can’t help but focus on this particular statistic about work, productivity, and illness. Since we live in an age where economics, healthcare, and quality of life are increasingly linked together and increasingly strained, I can’t help but focus on this study as a whole.

Sobering information? Definitely. But there’s a bigger message in these results, a positive one: most of this economic impact is avoidable through effective disease prevention.

In fact, according to an article on the PFCD’s site, “The study is the first of its kind to estimate the avoidable costs if a serious effort were made to improve Americans’ health. Assuming modest improvements in preventing and treating disease, Milken Institute researchers determined that by 2023 the nation could avoid 40 million cases of chronic disease and reduce the economic impact of chronic disease by 27 percent, or $1.1 trillion annually. They report that the most important factor is obesity, which if rates declined could lead to $60 billion less in treatment costs and $254 billion in increased productivity.”

There’s reason to hope this trend doesn’t have to continue.

(And with winter almost behind us, there’s reason to hope my own trend won’t continue, either. After all, my track record for July 4 is practically spotless!)

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Writing Well

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Coming from keyboard of a writing instructor, those two little words might just conjure up images of sentence diagrams and arcane grammar rules. While I do admit to making my advanced writing students suffer through a brief “it’s/its” and “there/their/they’re” refresher (because really, can I release them into the real world without knowing the difference?), I have no intention of discussing writing mechanics here.

No, I’m much more interested in a far more compelling meaning of “writing well.” A few months ago, I mentioned a creative writing program for pediatric patients with chronic illness I was given a fellowship to finish developing. I spent more than a year consulting with doctors, pediatric social workers and other experts and compiling extensive research to make the case that if you give pediatric patients the tools to express their feelings and emotions about illness, the benefits are manifold: better adjustment and attitude towards illness, increased compliance with treatment plans, increased quality of life, and decreased hospitalizations and costs.

It’s a win-win situation.

Though I’ve had to step away from active implementation of the program temporarily, I remain committed to seeing it come to fruition, and remain committed to my belief in the power of words to heal. And certainly, witnessing a thriving medblogging community only furthers my belief in this.

Of course I had a lifetime of personal anecdotal experience to motivate me—when I was a child sidelined with illness, I read and wrote constantly. The sicker I got, the more pages I read and the more pages I wrote.

However, I used something far more concrete to help build my case: research published in JAMA that showed patients with asthma and rheumatoid arthritis who wrote about their illness experience manifested better health outcomes than the patients who didn’t.

I am happy to report there is more evidence to help make the connection between writing and wellness even stronger: a recent New York Times article by Tara Parker-Pope called “The Power of Words for Cancer Patients.” Researchers followed 71 adult cancer patients who wrote about their illness experiences while waiting for their routine oncology appointments. They were asked write about how cancer changed them, and how they felt about those changes.

According to the article, “After the writing assignment, about half of the cancer patients said the exercise had changed their thinking about their illness, while 35 percent reported that writing changed the way they felt about their illness …While a change in the way a patient thinks or feels about a disease may not sound like much, the findings showed that the brief writing exercise led to improved quality of life.”

Writing about illness is far more than merely a coping therapy. Expressive writing can be transformative. The article quotes one study participant as saying the following about the writing process: “Don’t get me wrong, cancer isn’t a gift, it just showed me what the gifts in my life are.”

Seems like no matter what your age or illness is, if writing can somehow get you closer to that point, it’s worth a shot. Right?

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A Fresh New Grand Rounds is Up at ChronicBabe

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And I do mean fresh, considering this week’s theme is “New Beginnings.”

Jenni Prokopy, founder and editrix of chronicbabe.com, “a site for young women with chronic illness who strive to live well in spite of health-related limitations…to be babes!” did a great job compiling diverse and compelling perspectives on fresh starts–with spring on the horizon, it’s perfect timing!

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Re-Calibrate, Then Restart

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Re-Calibrate, Then Restart

“Um, you’re going to re-calibrate your definition of ‘feeling sick.’ Starting now,” one of my doctors said to me this week, clearly not impressed with my nonchalance.

The thing is, I wasn’t even being nonchalant. Not purposely, anyway. I was simply conditioned to be oblivious.

I’ve said before how so many aspects of living with chronic illness are universal—no matter what your particular symptoms or conditions are, there are some static themes. The more I write and the more experiences I cull together from other patients, the more firmly I believe this.

But it’s larger than that. So many things about living with chronic illness are universal, period. Whether you’ve been sick since birth or have never had more than a cold your whole life, still emotions and patterns resonate.

Recent events and twists and turns in my health status have made this especially clear.

Example #1, Stuck in a rut-ness: Is it me, or is the tendency to get stuck in a routine or pattern directly proportional to the longer and colder a winter is? Indoor workout routines get dull and less effective, piling on sweaters and layers of pants gets boring and repetitive, getting up in the morning when it’s still dark gets old fast. Yet there’s not much we can do besides hit the “repeat” button and keep on going.

Personally, my winter rut has been one punctuated by infections. While respiratory infections are an occupational hazard of being me, this winter has been beyond the norm. Since October, I haven’t gone more than 10 days without an infection. Bacterial, viral, ones that fester in my lungs and ones that invade my upper respiratory system—it’s definitely been an equal-opportunity season.

So hopefully it’s somewhat understandable that during the past two weeks when I felt exhausted, feverish, and had muscle and joint pain that I attributed to something else (more on that in a minute), it didn’t occur to me to do anything except go to work and keep doing what I needed to be doing? And that it didn’t occur to me that it could be the flu?

“I’m just gotten so used to feeling like I have an infection that I no longer stop to think about it too much,” I told my doctor. “It’s beginning to feel like normal, or at least not that sick.”

Hence the “re-calibration” comment, some in-office nebulizer treatments, and orders to stay in bed for several days.

“But can I teach my last class before spring break first? It’s in an hour,” I said.

She was not amused.

Example #2, Adaptation and Loss: Think about a loss in your life. Was it a bad-break-up? A close friend or family member moving away? Everyone’s experienced what it’s like to have a constant disappear from your life, and the adjustment period it takes to get used to its absence. Sometimes, it isn’t till you stop and realize you’re no longer consciously thinking about it every day that the absence is real.

Allow me to turn this around a little bit. Four years ago when steroid withdrawal caused my adrenals to crash, constant muscle pain and overwhelming fatigue became a part of my life for the next three years. The burning, cramping pain kept me awake at night and when my legs turned to “concrete” mid-step, I could be stranded. I got used to living like that, to never knowing when my body would halt, to walking slowly and trying not to wince.

My recovery was gradual, very slow, but as the months and years went by and my adrenals recovered, I inched closer to the baseline I had before the crash.And before I knew it, I wasn’t even thinking about that kind of pain anymore. I wasn’t planning errands and factoring in the “concrete syndrome.” I was just being me, and I wasn’t even conscious of the change, of the absence of pain anymore.

So it wasn’t until that familiar burning pain, that last step of the staircase that seemed so far away, that slow, sluggish gait came back a couple of weeks ago that I realized how far I was from that place four years ago—and how terrified I was of ever going back to that constant. (The IV infusion of solumedrol every six weeks for years was also something I was loathe to repeat).

The end result? My adrenals are functioning a bit lower than they should be, but they’re chugging along. Since my adrenal depletion is the result of infections this time around, my doctor is confident they will recover on their own, though it may take some time. And while it may take several more days to settle down from the flu, that too will pass.

So as I face down a spring break filled with catch-up work and recuperation, I have some goals. I need to calibrate my idea of what being acutely ill feels like and start fresh—this means not ignoring fevers or assuming I know what’s wrong when I don’t. No more ruts. I also need to squash back my fear of the adrenal situation, because it is mild and temporary and I have the knowledge and resources to do what my body needs.

It might not be spring for several more weeks here in Boston, but I’ve done some mental spring cleaning.

After all, spring is synonymous with renewal, right? And that’s a universal.

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