Interviews, Inspiration, and Links

I am used to being the one conducting interviews, so I was anxious to see how my Author Q&A with Library Journal went. Check it out here.

Since we’re (somewhat) on the topic of writing, I read a great essay in the Chronicle of Higher Education. It discusses the process that results in published work, a process that, from the outside, may not appear as arduous and productive as it really is:

“What does it look like to do intellectual work? What does it look like to have an insight? To formulate a theory? To solve a philosophical problem? What does it take to get to the point at which you’re ready to sit down and write something, ready to present something to the world?

Experience tells me that sometimes it looks like playing Spider Solitaire. Or twirling one’s hair, talking to oneself, or sitting stock still and staring into space…

…We go through the motions that have led us, in the past, to cerebral success. We can no more force ourselves to make an intellectual breakthrough than we can will ourselves to sleep. All we can do is prepare the environment and perform the rituals associated with thinking.”

For anyone logging long hours doing work that isn’t always visible in conventional ways, be sure to read it. Or pass it on to the next person who asks you, “So what do you do all day?”

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So I’m a day late posting, but here’s hoping the expanded edition of the May Pain-Blog Carnival will give you some good weekend reading. The best posts of the month are featured, and new bloggers are always welcome to participate.

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What Remains…

“Your life will become about your relationships.”

An incredibly wise woman I know relayed the preceding sentence to me once during an interview. We were discussing employment and illness, and it was something someone said to her when she was grieving the loss of her professional life and career.

Your life will become about your relationships.

What that means, of course, is that your life will be defined by the bonds you make with other people, not by titles or promotions. That your life’s richness will be assessed by the lives you touch, the love you give and receive, not the paycheck you bring in or the billable hours you accrue.

It’s a simple sentence, really, but a reality check indeed.

This sentence has been on my mind a lot these days, for reasons that reach far beyond questions of employment and career aspirations. The life of someone I had the privilege to know ended far too quickly, far too awfully. I can’t begin to imagine the loss her friends and family are experiencing, and I won’t attempt to try. Sometimes it’s just not your story to tell.

But what I do think is appropriate to mention is just how many people mourn her, how many people miss her smile, remember her warmth, claim to have been touched personally by her upbeat attitude.

Such was a life lived about relationships, for relationships. In terms of life and death, it doesn’t get clearer than that.

In so many smaller ways, this sentiment is a reminder for everyone, healthy or chronically ill. There are losses and setbacks, disappointments and diagnoses. We miss events and cancel plans, and things just don’t go according to plan. We resign from jobs or switch paths, and it isn’t always what we want…

But if we work towards living a life that is about the people in it, then much remains.

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Education, Disrupted

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.

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Chronic Pain: Class and Cost Distinctions

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.

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

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!!!

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April’s Best…

A quick note to say the April Pain-Blog carnival is up here, featuring the month’s best posts.

Also, starting next Monday, HowToCopewithPain will be hosting Monday Chats, which are real-time moderated discussions from 12-1, and frequently-moderated the rest of Mondays. Stop by to join the discussion. This Monday’s topic: What’s your biggest challenge and how to you deal with it?

Speaking of contributing, check out the details of the 2nd Annual DiabetesMine Design Challenge, “a competition designed to foster innovation in diabetes design and encourage creative new tools that will improve life with diabetes.”

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Taking a Look at Healthcare Policy: The McCain Campaign

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.

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Library Journal and Grand Rounds…

So I’m jumping into the political fray courtesy of an interesting press call today but while that post is percolating, here are a couple links hot off the presses.

Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!

Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week–check out the multitude of heavy-hitting posts.

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Incidental Economics of Illness

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.)

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It’s Official!

Amy Tenderich of DiabetesMine.com has posted the first official review of Life Disrupted. Check it out here.

While you’re clicking away, be sure to read this week’s Grand Rounds, hosted by Dr. Val Jones at Revolution Health. As always, it’s a compilation of the best medical writing out there, and this week’s entries are certainly compelling!

Stay tuned for a scintillating look at the incidental economics of illness…

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