Wednesday, July 30, 2008

Mid-Week Resources

Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.

Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I'm thrilled to see growing attention towards this phenomenon.

Monday, July 28, 2008

On Interstate Dining, 80s Music, and Caregivers…

This weekend we completed our first road trip of summer 2008—twelve hours to Michigan for a family function, and twelve hours back just in time to pick up the dogs at their kennel and get to work.

Radio stations and rest stops are the only things that break up the monotony of long car rides—well, that and crossing the Canadian border each way. I know all about the tips for eating gluten-free while traveling in the car, and I dutifully pack nuts and trail mix, bottled water, and fruit.

(I’m irrationally militant about consuming greens at every meal, and after doing this route for a few years now, I can vouch for the Lee, Massachusetts service area with a Fresh City and the Pembroke, NY service area with a Fuddrucker’s as A Chronic Dose-approved salad stops.)

While we may have stocked up on gluten-free snacks, we forgot to bring our iPod adapter or CDs so it was all radio, all the time. In a freakish coincidence that defied station, state, or even country, every single different station that came in played 80s tunes—REO Speedwagon, Chicago, and lots more. Seriously. The songs totally brought me back to my childhood, to driving around in my mother’s cream station wagon, my legs sticking to the leather interior in the summer’s heat.

But we heard one song that has a particularly vivid and visceral memory: “The Power of Love” by Huey Lewis and the News. Whenever I hear it—and this past weekend was no exception—Bam! I’m five years old, a couple of weeks into my several-week stay in isolation due to a serious staph infection spreading from my ears to my brain. It’s brashly sunny in my white room overlooking the Charles River, and I am bored.

There was a playgirl on my floor named Mimi—I’m sure that wasn’t her official title, but that’s what I called her in my head—and since I couldn’t go to the playroom with the other peds patients, she brought special toys and games to me. One time, she brought a small radio and played that song. I still remember her strawberry blond curls and pale skin, still remember the effort she made to bring a little bit of fun into my life.

(As an aside, it’s no irony that the summer before college I volunteered with the Child Life department at Boston Medical Center, where I learned how to engage in therapeutic play on an in-patient floor…and it’s no coincidence that I loved it.)

Anyway, all of this road trip reminiscing is going somewhere, I swear. Clearly I had hospitals and caregiving on my mind this morning when I read this post on Running a Hospital, a note from a family member of a hospital patient who wanted to highlight the exceptional care certain nurses and physicians gave her relative.

I’ve always said it’s the nurses who make or break a hospital stay, and I firmly believe that. They are the ones who attend to our immediate needs, who spend a lot of time reassuring family members and answering questions, who are our advocates and caregivers, and whose gestures, however big or small, can make such a difference in our quality of life as inpatients.

I’ve had nurses who’ve stayed late to give me chest PT when respiratory therapy couldn’t make it, or who brought decorations and festive platters of baked goods and flowers from their own holiday celebrations to cheer up the floor. I’ve had nurses who’ve made me laugh when I desperately needed to, who’ve made me feel comfortable despite extremely uncomfortable symptoms and circumstances, who’ve treated my friends and family as warmly as I would.

I’ve also turned a sharply trained eye to the nurses in charge of the people I care about. Like the letter-writer in the post I mentioned, I’ve appreciated—and remembered—the nurses who soothed their anxiety, prioritized their worries, and responded to their concerns and fears with dignity. I’ve taught several sections of nursing students, and I am always impressed with their passion and enthusiasm for patient care, passion they bring to their classroom discussions and their research projects.

So while the weeks I spent in isolation as a little girl aren’t the best memories I have, certainly, the memory that classic 80s tune conjures up is a good one—it reminds me that for however overwhelming the hospital can be, there are doctors, nurses, physical therapists, child life specialists, and many others whose actions remind us we are people, not solely patients.

Speaking of nursing, interested in basic information on the nursing shortage or chronic illness nursing programs? Check out these links. Just a little bit more summer reading…

Monday, July 21, 2008

An Open Mind

I was asked recently what one thing I would like to tell physicians, nurses, and other health care providers. I just wrote a book about interacting with the health care system, and its content ran the gamut of emotion: gratitude, optimism, frustration, skepticism--clearly I’m not one for brevity.

In the end, though, the answer was succinct, and the more I think about it, it is something that applies to patients and practitioners equally:

Keep an open mind.

In terms of diagnosis, the flash point for so many patients with chronic conditions, keeping an open mind works in several ways. For physicians, it means remembering that the obvious, logical diagnosis may not always be the correct one, something I can attest to personally. I am forever grateful to the physicians who looked beyond what “should” have made sense for a diagnosis and found the diagnosis that actually reflected both my experiences and my symptoms—even if it was an exceedingly rare one. For patients, it means remembering that even if you’ve been dismissed before, it is possible to start fresh with a physician or nurse practitioner and work towards a correct diagnosis.

In daily life, keeping an open mind means, quite literally, being open to new or creative ways to adapt to illness. Whether it means trying techniques like yoga or meditation, incorporating new foods and recipes into meal planning, or very pragmatic things like switching your exercise schedule or working out a flex time arrangement with an employer, keeping an open mind means recognizing there are many different approaches towards accomplishing a particular wellness or lifestyle goal.

If you’ve been reading this blog regularly, then you know how important I think an open mind and a willingness to try new ways of solving existing problems are to meeting some of the universal challenges in health care: better disease outcomes, increased compliance, and, yes, of course, more accurate and efficient diagnoses.

That’s why I’ve posted about the value of expressive writing, and why I developed a creative writing program for chronically ill pediatric patients. It’s also why I think programs like Dancing with Parkinson's or Loolwa Khazzoom's Natural Pain Relief that use dance and other forms of the arts to relieve pain, increase strength, and otherwise address symptoms of debilitating disease are incredibly valuable.

It’s also why I was so interested in "Monet? Gauguin? Using Art to Make Better Doctors" from Sunday’s Boston Globe, which discussed a class at Harvard Medical School that encouraged medical students to use art to improve that most fundamental and most complex of interactions—the patient exam and diagnostic process.

The article quotes Dr. Joel Katz, who first proposed the class five years ago, as saying, "We're trying to train students to not make assumptions about what they're going to see, but to do deep looking. Our hope is that they will be able to do this when they look at patients.”

Turns out, new research in the Journal of General Internal Medicine supports this. The article goes on to say that the students’ ability to make more observations increased by 38 percent. In age where physicians rely heavily on CT scans, MRIs and other specialty diagnostic tools—some argue too heavily, and at too high a cost for the health care consumer—helping medical students learn to see the many possibilities inherent in one situation is a valuable skill indeed. More precise observations yield more precise diagnoses.

Sounds pretty good, doesn’t it? The course was a stark departure from the required core courses at Harvard Medical, but all it took was a few open minds…

Tuesday, July 15, 2008

Following Up on Living Proof...

In a nice coincidence, I did an interview with Deborah Harper of Pyschjourney today that emphasized many of the themes in my previous post--a pioneering generation of adult patients; the impact of spousal caregiving on younger marriages; transitioning into adult care as a younger adult, etc. While cystic fibrosis is by no means the only example of this type of disease whose population is truly re-shaping medicine, it is a great example nonetheless. Of course we talked about lots of other stuff, too, and you can click here to download the podcast.

Monday, July 14, 2008

Living Proof...

Before I jump into this post, I want to take a moment to thank each of you who showed up to my reading events last week. The show of support at Porter Square Books was truly overwhelming—it was a standing room only crowd, and we sold out of all the books and dipped into special orders. Many thanks to everyone who showed up; it was great to see familiar faces, and equally great to see and hear from so many of you I’ve never met before.

One of the questions I am asked often, and one of the things I spoke about last week, is why I wrote Life Disrupted. The short answer is that I saw a real need for it. While there are many more details and nuances to that statement, that one simple sentence really does sum it up. I saw a population of younger adults with chronic illness that was much larger than most realized. Patients with serious childhood diseases are living longer into adulthood, and many otherwise healthy patients first manifest chronic and autoimmune conditions in their twenties and thirties.

Within that diverse patient population, I saw so many important trends that weren’t being written about in a substantive, mainstream way. Two of those trends, and arguably two of the most compelling and complicated ones, include the impact of spousal caregiving on younger marriages and the “can versus should” debate in terms of people with chronic illness having children. I was fortunate to find patients whose experiences speak to these issues, including patients with cystic fibrosis (CF), among many various illnesses covered in the book, and I learned a lot from them.

So why am I telling you all of this right now? Because this week I was also fortunate to stumble across this blog, Confessions of a CF Husband. It’s an engrossing, honest look at one family’ journey through the wife’s double lung transplant and the premature birth of their very-much-hoped-for baby girl, a high-risk pregnancy situation indeed. Their struggles and triumphs are inspiring and sobering, and their realities mirror those of a generation of patients with the power to truly redefine how we perceive people with serious disease.

Tuesday, July 08, 2008

More Summer Reading…

For reading of the in-person variety, a quick reminder for local readers that I’m reading and signing books tonight at 7:30 at Back Pages Books in Waltham, MA.

This Thursday, July 10 at 7:00 I’ll be reading and signing books at Porter Square Books in Cambridge, MA, followed by Life Disrupted’s (unofficial) launch party. So come to Porter Square, buy a book or two, bring a friend or two, and stick around! (For more details, see the sidebar of Scheduled Events.)

And now back to the original point of this post—here’s a really interesting essay from that explores the dearth of primary care physicians in our country. You may remember I’ve touched on this issue before; primary care is complicated terrain for people with rare diseases.

Recent events illustrated yet again why I need to renew search for a primary care doc in my hospital network who accepts new patients. When I needed someone to see me for the intense, stabbing pain in my lower right quadrant (it turned out to be mesenteric adenitis), there was a lot of back and forth between specialists about the most appropriate person to see me. They both agreed on the ER in the end since they feared it was acute appendicitis, but that’s beside the point. We all need someone to field these kinds of issues, since they’re not typically the stuff of specialists.

Anyway, the dwindling number of family medicine doctors and internists is certainly not a news flash, but this essay is a thoughtful exploration of some of the reasons it’s happening. Enjoy!

Monday, July 07, 2008

Summer Reading...

Nothing says Independence Day quite like the Law and Order SVU marathon. With my long weekend vacation plans derailed by an acute infection (where do I keep catching these things, anyway?), I ditched the sandy shores of Cape Cod for my living room couch and settled in for the one-two punch of the nebulizer and Benson and Stabler cracking meaty cases.

However, my revised weekend plans also gave me a lot of time to feed my habit as a news junkie, and I came across some stories I had to share.

I recently wrote about the promise of research in terms of better treatments and improved outcomes, so I was particularly excited to read these new developments. This Boston Globe article discusses cutting-edge nanotechnology that allows scientists to detect cancer cells in patients’ blood, which could mean more targeted treatment and less side effects.

According to the article, “The technology, invented at Massachusetts General Hospital, uses a microchip scanner no bigger than a business card to analyze a patient's blood, hunting for stray cells shed by tumors. The device is so powerful that it can detect a single cancer cell among 1 billion healthy blood cells.”

Another Globe article—this one’s hot off the presses, in today’s edition—reports that scientists have linked 32 genes to Crohn’s disease, a serious autoimmune disorder that affects the GI system. While genome research is often used to help determine the risk of developing certain diseases, this type of information is a powerful use of research with huge implications for patients. As the article posits, figuring out what goes wrong in certain diseases will help experts design more effective treatments:

“I would say Crohn's disease has proved the paradigm," said Dr. Francis S. Collins, outgoing director of the National Human Genome Research Institute. "Namely, that by studying the genetic factors involved in a complicated disease, you can shine bright light on its causes that you never could have achieved any other way.”


In preparation for a ReachMD radio interview I’m doing, I’ve been thinking a lot about the doctor-patient relationship. I’ve had some truly amazing doctors and nurse practitioners—compassionate, insightful, dedicated, and creative people. I’ve also had the opposite, of course, and those are the relationships I’ve abandoned. As such, I found this New York Times piece fascinating—in this case, it’s the doctor who ends the relationship because he cannot work with the pediatric patient’s difficult (and noncompliant) mother. Check it out and see if you agree.

Speaking of the New York Times, I’ve enjoyed past entries about writing and illness in Tara-Parker Pope’s “Well” column. If you’re interested in the power of expressive writing, here’s another good read from her column, this time about poetry and cancer.


Tuesday, July 01, 2008

Changing the (Chronic) Routine

No matter who you are or what you do, you have some sort of routine. Whether it’s when you exercise, when you take your morning coffee break, or what you read during your commute, there are certain rituals that prevail and structure our chaotic, multi-tasking days.

Personally, I crave routine and really can’t function without it. I get all antsy and agitated, like I’ve had too many Red Bulls and haven’t worked off any of the energy. Given my propensity for medical mishaps and rapid changes in health status, this dislike of disruption is unfortunate, but I roll with it as best I can. As I’ve written before, it’s impossible to parse out how much of this is part of my inherent personality and how much of it is a response to a lifetime of illness, but at this point, the origin doesn’t really matter.

When you have chronic illness, the notion of routine takes on even more significance, and we each have carefully constructed disease management rituals. For example, I start my day with an early morning chest PT session with my physical therapist—while I’m not exactly excited for a vigorous chest pounding at 6:45, if I make coffee it’s tolerable for both of us—followed by taking my pills and using my inhalers, peak flows, and, if I need it, my neb. Then I get to work.

Of course that’s just an example. I know diabetics who have their early morning blood sugar testing routines down to a science, and arthritics or people with other pain conditions who need to do certain stretches and warm-ups before they can tackle the day. In this context, routine is a good thing, it means we don’t forget to take pills or do our exercises or anything else that needs to be as rote as brushing our teeth or taking a shower. (Again, I really believe many of the universal aspects of living with a chronic condition outweigh disease-specific differences.)

Though I’m somewhat loath to admit it, there is definitely such a thing as too much routine, especially when it comes to nutrition and cooking. I’ve discussed how instrumental my husband was in helping me broaden my culinary horizons when I was first adjusting to eating gluten-free, and we often try new places and new foods.

But lately we’ve gotten into a bit of a cooking rut. There’s only so many nights salad, veg, and something grilled can taste great without tasting repetitive. As a gluten-free, dairy-free eater I am all about the fresh produce and whole foods, and I pack a mean punch with spices, but still. I looked at our grocery list and realized we buy a lot of the same vegetables and fruits every week. How much broccoli can one couple reasonable expect to consume and be satisfied?

I think when you have any sort of condition that restricts your diet, from celiac disease to IBS to Crohn’s, once you’ve experimented and found a “safe” group of foods, it makes sense to operate within that safe zone. (If it ain’t broke…) However, there’s something to be said for lateral variety, new iterations of things we already know are safe.

So when I came across this post from Alicia about Boston Organics, a company that delivers fresh (and often, locally-grown) vegetables and fruits to your door, I got excited. As she posts, the service makes a lot of sense for people with chronic illness who may not always have the energy to do big shops—they do all the heavy lifting! For people with sensitive GI systems who have very specific needs, it’s especially useful—you can choose which items you never want to receive and then select acceptable replacements.

(And for us, the smallest basket costs about what we’d pay for our weekly produce anyway, so financially it made sense).

I was excited by the prospect of a different array of produce each week, and that’s been the biggest benefit so far. Already we’ve done lots of things with kale, learned that overcooked leeks get slimy, and made wonderful cucumber salads, fruit salsas, and other side dishes we wouldn’t have tried otherwise. It keeps our menu planning diverse and our palette challenged, and that’s really important when you live with any kind of dietary restriction—you never want to feel restricted.

We even inspired to make sushi on our own last week, armed with cucumber and green onion from our weekly delivery. (And, of course, safe rice vinegar and gluten-free soy sauce!) It required more time, energy, and money than we typically have to spend but it was really fun and something we’ll definitely do again. Here are a couple of pictures:

Like I said, clearly we need routine to manage chronic illnesses. But it doesn’t hurt to change things up a bit, either. It’s a question of figuring out where we can build in flexibility, that’s all.


Speaking of changing things up, Loolwa Khazzoom had Sex in the City on the brain the other night (which worked out well for me) and it made her think women with chronic pain deserve their own camera! Check it out here.
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