Category Archives: Chronic Illness

Education, Disrupted

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This is how this post should have started:

“Today I participated in the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s
Chronic Illness Initiative.”

Instead, this is the real beginning:

Today I was supposed to be in Chicago speaking at the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s Chronic Illness Initiative.

Instead, I’m lying prone on the couch and various illness paraphernalia surrounds me. I’m somewhat confident I’ve skirted a hospitalization, but still wary of the possibility.

Um, yes. The speaker who was supposed to train faculty on handling students with chronic illness and offer strategies to chronically ill college students is a no-show because she came down with a particularly vicious respiratory infection. My life is nothing if not dependably ironic, no?

I don’t have enough lung capacity to do public speaking right now, but I can type. So instead of the presentations I planned to deliver, let’s see if this disruption can yield something of value anyway.

First off, the
Chronic Illness Initiative (CII) at DePaul is a truly amazing program. I first learned of it when researching a chapter in my book and was so impressed with the scope and mission of the program. In summary, it allows chronically ill students to get their degree at their own pace. It also serves as a liaison between students and faculty; educates faculty and staff about chronic illness; and assists students in planning viable schedules, among many other vital services.

Why is the CII so forward-thinking and necessary? Like the workplace, academia is not always equipped to handle the particular challenges of chronic illness. In the classroom, these challenges include prolonged absences, seasonal fluctuations in illness, unpredictable illness flares, etc.

Sometimes, students are lumped in with offices that cater to students with learning disabilities or physical disabilities, populations with very different needs than those of students with “invisible” chronic illnesses. In other places, students and instructors are left to devise ad hoc policies on their own which is also problematic, especially if the particular manifestations of a student’s illness are not understood.

I spent fours years in the trenches trying to balance serious chronic illness with a challenging college course load and GPA worries. I had faculty and administrators who learned with me and worked with me, and I made it through. I know firsthand how important disease education, communication, and accountability are to this dynamic, and I know that if you advocate for your education you can succeed without jeopardizing your health.

But I also know not every student has such good experiences. And I know that it doesn’t need to be as hard as it is for so many, or even as hard as it was for me. That’s where the CII and the learning objectives of this year’s symposium come in—from the benefits of forming a coalition between medical professionals and administrators to understanding the disabling nature of fatigue to identifying the problems students face when transitioning to independent care of their conditions, this year’s meeting promises to cover many timely and necessary issues.

The mission and goals of the CII are hopefully ones that in time will be replicated on college campuses throughout the country. Until there are more universal policies regarding issues like illness disclosure, absences due to chronic illness, or flexibility with course load and pacing, chronic illness will pose a greater obstacle to higher education than it needs to be.

I wish I was there soaking it all up and learning from my colleagues and from the students. But I’m trying to roll with it and accept the unpredictability of chronic illness, something the students of the CII know doesn’t defer to tests or deadlines—or, in my case, a symposium, either.

Chronic Pain: Class and Cost Distinctions

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As I sat icing my hips today—I knew my beloved elliptical machine was bad for the hips, but wasn’t expecting the stationary bike to be so tortuous—I recalled an interesting Time article about chronic pain I read last week.

That chronic pain is both exhaustive in reach and hugely expensive certainly isn’t news. Still, some of the statistics the article highlights are sobering:

–More than one quarter of Americans suffer from chronic pain
–Each year, chronic pain costs us $60 billion in lost productivity
–In 2004, Americans spent a whopping $2.6 billion on OTC pain medications

Even more compelling are the recent finding from the Lancet that explore chronic pain and its class implications. The Time article goes on to report that:

“Americans in households making less than $30,000 a year spend nearly 20% of their lives in moderate to severe pain, compared with less than 8% of people in households earning above $100,000.”

Other points of interest? The difference extends to the nature of pain itself. People on the affluent side of the economic split often experienced pain from activities like exercising; people on the other end of the spectrum experienced pain as a result of the physical labor and repetitive movements intrinsic to blue-collar jobs.

What’s positive here is that with better preventative policies in the workplace some of this pain can be managed. But coupled with another study’s finding that those who live in poorer ZIP codes have less access to pain medication because their local drug stores don’t stock enough of it, the picture isn’t as clean.

Anyway, be sure to click on over and read the whole article–I’ve highlighted what was most interesting to me, but there’s more to it, especially information on gender that isn’t what we usually hear.

Obviously the scope of pain goes far beyond exercise and physically demanding jobs—from migraines to arthritis to a whole host of conditions, there are plenty of reasons people are in pain, miss work, socialize less. I know for me, the tendonitis in my hips is a source of pain less frequently than pain in my lungs or joints from other conditions. Often these sources cut across class and economic boundaries, but until the gap in access to resources closes, a divide remains.

***
On a somewhat related note, I was quoted in a USA Today column on spirit-boosting tips when you’re dealing with illness or pain. Check it out–hopefully, some of the patient experience collected there cuts across class and economic boundaries,too.

On Food, Cost, and Cabbage–A Gluten-Free Solution for What Ails Us

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Several things were swirling around in my head as I decided on this post:

1. My recent entry on the incidental expenses of illness
2. Worldwide strife over food prices and shortages
3. Around the world, May is celiac awareness month

Buying and cooking gluten-free food has always required more creativity, effort, and expense (all well worth it, obviously) but when the price of staples like milk, eggs, and flour make headline news, the gluten-free budget isn’t headed anywhere good either.

Two other things should be noted for their particular relevance to this post:

1. In addition to being dairy and gluten-free, I have the singular focus of an old lady when it comes to nutrition. Fiber? Can’t get enough of it. In fact, if my lunch and dinner don’t revolve around something green, I get a bit twitchy. And sodium? I’m as tenacious about cutting out extra salt as I am about incorporating fiber. I’d like to say it’s because I’m that dedicated to good health, but really I also just hate the way my rings get tight when I eat salty food. (My husband survives this regime by keeping a shaker of salt and a container of parmesan cheese at hand, but let me assure what I lack in salt I make up for with garlic and herbs).

2. I’m mildly obsessed with the culinary drama (more drama than culinary, sometimes) called Top Chef. Last week’s challenge involved cooking a healthy, inexpensive, and easy family meal. Now, I was all about Nikki’s one-pan chicken and veg extravaganza, but some of those recipes looked way too persnickety for a truly easy family meal. I mean, I love to cook and I don’t even have children yet and I think on the average Wednesday night when I want something easy (so, you know, I can go watch Top Chef) I’d lose patience.

So, let’s recap—food is expensive, gluten-free meals even more so, and time and convenience are at a premium. I now humbly submit my entry for an easy, inexpensive, gluten-free meal: Lazyman’s cabbage rolls, an homage to my husband’s Midwestern casserole-rich upbringing. His mother gave us her recipe and we added a few twists. It only takes about 10 minutes to prepare and while it does need to bake, it is a great dish to make ahead of time (let it bake while you watch late-night TV shows) and re-heats really well.

The short version: brown some ground turkey in a pan, add some rice and a large can of (no-salt added) diced tomatoes and one cup of water in with it, then dump the mixture in a baking dish and smother it with 4 cups of shredded cabbage. You can split the cabbage in half and layer the tomato mixture in the middle. Leave it alone for an hour and a half at 425 degrees and then you have a meal plus leftovers. You can use beef, of course. We just like turkey. We use 3 tablespoons of risotto, but regular rice works the same. Few ingredients, less cost, and it’s low in sodium and high in fiber. What’s not to love?

Like any good casserole-inspired dish it looks messy but tastes great:

Before I send you off to the grocery store, two quick updates: Grand Rounds is up at Suture for a Living, so definitely check it out.

Last but not least, the kind editors at Publisher’s Weekly gave Life Disrupted a really great review in their May 5 issue. Click here to read it online!!!

Taking a Look at Healthcare Policy: The McCain Campaign

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In the midst of what has been quite a rollercoaster of a week, I was able to participate in a press call with the McCain campaign that focused on his healthcare proposals. Senior policy advisor Doug Holtz-Eakin and former Hewlett-Packard CEO Carly Fiorina answered questions from journalists and bloggers about his policies, which provide an interesting alternative to the talk of universal healthcare dominating the Democratic contest.

There are plenty of economic and political analyses of the McCain healthcare platform out there, so what I’m attempting to do is look at the key policies of the candidates that resonate most with my perspective: someone with multiple chronic conditions whose problem isn’t lack of insurance per se, but lack of confidence in my insurance and lack of the comprehensive coverage I used to have.

Overall, I like a lot of the central themes of the McCain campaign: we have great technology and innovation so the problem isn’t as much about quality as it is affordability of that care; patients should have more control over their own care and their choice in doctors; healthcare should focus on treatments and outcomes, not tests and procedures; and lastly, that prevention is key (no surprise there).

I can’t argue with any of those points. As always, I’m interested in the “theory into practice” aspect of things. (Who knew the basic distinction so critical in my teaching composition seminar would turn up so often in my health blogging?)

Specifically, the idea of portable health insurance that employees can take from job to job is quite appealing. Health insurance is an inordinately large deal-breaker in potential job opportunities in our world. Not being tied to a job for its health insurance or tied to sub-par health insurance because of the job that comes with it is certainly a refreshing option.

The ability to purchase health insurance outside of employer-sponsored plans through a $5000 tax credit (that this free market competition will drive down costs is a driving force of this policy) also sounds promising in theory. In practice, I worry where this leaves someone with pre-existing serious medical conditions. If I’m to go out into the national market and try to buy a plan, will the “safety net” in place for patients like me actually catch me?

Other aspects of his platform I gravitated to include publishing doctor fees and patient ratings on Internet to weed out the worst providers; encouraging telemedicine; and providing incentives for healthy lifestyle choices, though in reality I’m curious as to how this would actually play out. His team was clear that these would be incentives, not mandates, but in the push for outcome-based medicine, would that line get blurry?

One thing I’d like to know more about is how his push for pharmaceutical reimportation would impact research and innovation for orphan diseases.

In sum, McCain’s policies are an interesting alternative to universal health care—about as different as you could get—and give me a lot to think about. In coming weeks, stay tuned for a closer look at the Democrats’ policies, too—we’re equal opportunity here at A Chronic Dose when it comes to evaluating healthcare platforms. In the interim, for a nonpartisan look at the different candidates’ healthcare policies, check out the Partnership to Fight Chronic Diesase.

Incidental Economics of Illness

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In a freakish turn of events, I dined out recently with two friends and I was the healthy one. (Well, okay, the visibly healthy one, if you must).

My two friends are preternaturally athletic, the type who run marathons and triathlons, who scale mountains on other continents, and generally amaze me with their natural ability and iron work ethic. Yet that night, they were wearing identical walking boots, having each suffered metatarsal injuries of some sort. One was even on crutches.

And there I was, not a sprained ankle, torn ligament, or broken bone to be had. Finally, I got to hold doors open and offer to carry bags for someone else.

Weird.

As our little trio limped down the city street, one my friends commented on the hassle it was being somewhat incapacitated.

“It’s really expensive,” she added, commenting on the number of cabs she’d had to take lately when the walk to public transportation would have been too much for her injured foot.

I nodded vigorously.

She’s right. Now, I realize just how far down on the priorities list this topic is. I know how expensive chronic disease is in terms of productivity and lost wages. I’ve seen Sicko; I know people with health insurance lose their homes and livelihoods, and even their lives. I know many other people do not have insurance, so a broken bone or X-ray or MRI can be a catastrophic cost.

I’m certainly not arguing any of that. But that topic is much larger, more unwieldy and complicated and frustrating, than what I am attempting to focus on here. So with that caveat in mind, shall we?

When you add up all the little expenses that come with being sick, those incidental little things that aren’t neatly categorized like co-pays and deductibles are, it really is costly.

Like my friend, I’ve definitely paid for many, many cabs when I’ve been too broken/adrenally-depleted/infection-ridden or otherwise worn out to take public transportation. I’ve paid tons of exorbitant parking garage fees because I couldn’t walk to a place or knew by the end of the event or appointment I wouldn’t be up to commuting.

Don’t even get me started on the number of non-refundable plane, train, theatre, and concert tickets we’ve lost money on when my health status changed quite rapidly and we had to cancel our plans. (Yes, sometimes people are understanding and work something out with us, but that is not the norm.) And of course there are the projects and jobs I’ve turned down because I’ve gotten too sick or landed in the hospital, but that’s another issue.

Despite our insistence on store brands and the fact we only buy enough for the meals we eat in one week, grocery shopping is more expensive because, frankly, most of the inexpensive food I cannot eat. Now, I do love me fresh produce, and all-natural, gluten-free grains, soymilk, and the $2 GF energy bars I grab to keep in my briefcase as a quick non-perishable snack, but they are by no means inexpensive. I’m sure all of you with various GI issues and dietary restrictions can relate.

Even dining out costs more than it might for the average person at the average restaurant because very often, the only “safe” menu choices beyond a small garden salad are the grilled fish entrée or the steak. No cheap middle of the road burger or sandwich or affordable domestic beer.

Anyway, I could keep listing all the ways illness sucks money out of my pocket, but I realize to even notice these incidentals is a luxury. It means the truly costly parts of life with chronic disease are under control.

It could be a lot worse.

(But I know you’re nodding your head and mentally cataloging your own incidentals list, too. It’s okay.)

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.

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.”

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.

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!)

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?