On Interstate Dining, 80s Music, and Caregivers…

Posted on July 29, 2008 by ledwards

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…

An Open Mind

Posted on July 21, 2008 by ledwards

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…

Following Up on Living Proof…

Posted on July 16, 2008 by ledwards

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.

Living Proof…

Posted on July 15, 2008 by ledwards

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.

Summer Reading…

Posted on July 7, 2008 by ledwards

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.

Enjoy!

Changing the (Chronic) Routine

Posted on July 1, 2008 by ledwards

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.

The Carrie Bradshaw of Chronic Illness

Posted on June 30, 2008 by ledwards

So my apologies to those of you who’ve seen it or read it or follow Life Disrupted on Facebook, but I wanted to quickly post a link to a profile of me that appeared in Saturday’s Boston Globe.

Apparently, I am the Carrie Bradshaw of chronic illness!?

Manolo Blahnik, where have you been all my life?

A real post, complete with action photos and musings on routines and why we need to break them to follow…

PCD Foundation is “Charity of the Day” Today

Posted on June 25, 2008 by ledwards

As so many of you know, fundraising, awareness, and research are critical for improving patient outcomes and quality of life. For rare diseases that don’t get the face time and air time more common disease receive, this is especially true, and disease organizations are often our lifeline. So, I was pleased to get an e-mail last night informing me that GoodSearch named the PCD Foundation the “Charity of the Day” for today, Wednesday, June 25, 2008. Rather than forward the e-mail, I’ve included text from the PCDF press release below:

“GoodSearch.com and GoodShop.com are convenient ways for the PCD community to participate in fundraising for the foundation with no direct out-of-pocket expense. Goodsearch.com is a search engine (powered by Yahoo.com) that pays a penny per click to the designated charity. Goodshop.com is an online shopping service that can be accessed on the GoodSearch.com homepage that allows buyers to purchase from a wide selection of popular vendors with a portion of the sale going to the PCDF. The buyer does not pay any more than if they were to shop directly from the merchant.* Together, GoodSearch.com and GoodShop.com are powerful and convenient revenue-generating options for non-profits of all size. For small non-profits, like the PCDF, they are an essential part of our revenue stream…

*You can shop at hundreds of great stores. Amazon, Best Buy, Macys and many others have teamed up with GoodShop and every time you place an order, you’ll be supporting the PCDF!”

Here’s an idea–if you’re heading to Amazon to buy Life Disrupted, do it today through GoodSearch.com and help a wonderful cause. As a PCD patient myself, I can’t say enough how important the community-building, education, and research efforts the PCDF spearheads are.

(And no, I didn’t plan that shameless plug. The timing was just that good!)

PS–Tonight at 8:30 pm EST I’ll be a guest on syndicated health columnist Judy Foreman’s Health Now, an Internet radio show on HealthTalk . If you’re free, tune in and listen, and click on the link to register and ask a question.

Illness, Wellness, and Storytellers: Publication Day Musings

Posted on June 24, 2008 by ledwards

So today is the official publication date for my book, which is pretty exciting. I’ve seen photographic evidence of Life Disrupted officially on bookshelves, and I’m looking forward to walking into a store and seeing it with my own eyes.

Given its content, I find it somewhat amusing and fitting that if I don’t make it to a store tonight it is because I am sidelined with a freak viral infection of the lymph nodes in my abdomen. I mean, really, I couldn’t have scripted that life disruption better if I’d tried. (And oh yes, I did just make that terrible pun, but it’s my first and last offense on that front, I promise).

Anyway, while my mind is very much on writing these days, I couldn’t help but linger over this post by Felicia Sullivan, a terrific writer and supporter of writers who has an amazing memoir out right now. In this post she’s writing a review of Petite Anglaise, but what resonates most with me are her thoughts on blogging and its function in our lives as writers:

“This book is timely, however, when we’re all discussing “oversharing” and how our online “personas” affect our lives offline. One’s life should be lived not be crafted as a series of anecdotes fit for a blog post, so admittedly I came to this book with pre-conceived views on what parts of one’s life should be kept sacred.”

I couldn’t agree more. Of course life events are where writers and bloggers get their inspiration and everyone approaches how they blog differently, but Sullivan’s position that life shouldn’t be lived to serve as writing fodder is right on the mark. And I can’t help but feel that for people writing about disease/medicine, that rings especially true.

How do we sift through the symptoms and mishaps and complications and come up with something worth sharing (that isn’t over-sharing?) I’m curious what those of you in the trenches of medblogging have to say about that, because again that line is not only blurry but it varies greatly depending on writing style and approach. I don’t ever want my conditions to become why I write—after all, who wants to hear daily that it’s hard to breathe? That isn’t news or newsworthy in my world; as I’ve said before, it’s merely an occupational hazard of being me. It’s a thought trapped in a vacuum, when what I want is to open things up a bit.

But more than that, I find myself thinking about those parts of our lives we keep sacred and off-line, something even more present in light of the fact that it’s publication day for The Book. Obviously details of my personal life make up a lot of the book, as do personal details of several other patients. In a way, I faced the same questions and decisions in writing the book that I face when I blog—is there an added value to bringing in a particular story or anecdote? Does it advance or complicate an idea that’s important enough to warrant a reader’s time and attention?

And more universally, how do we know what stories are ours to tell and which aren’t? Anyone who writes nonfiction or blogs faces that question. Just because someone is or was in our lives, does that mean it’s fair game to include their details and their lives in our stories, especially if a medical situation is involved? Yet at the same time, our lives are so linked to the people in them that there’s no way our stories don’t involve them.

Personally, I err on the conservative side. I rarely use names on my blog unless it’s a public figure, and it isn’t, I just use first names or the ubiquitous “my friend” or “a loved one.” I wonder if that takes away from the human interest side of the story, but I’d rather take that risk. I don’t think there’s one ultimate solution to this question of whose story is it to tell, and it’s definitely not a problem unique to blogging—it’s just more exaggerated by the immediacy of blogging.

Anyway, before you rush out to buy a copy of my book (you are going to get a copy, right?), here are some links that are very apropos to this discussion on storytelling:

Check out this week’s edition of Grand Rounds over at Shrink Rap. Then, head to ChronicBabe where my friend (and a patient whose story is in my book!) Jenni Prokopy is having an essay contest to celebrate ChronicBabe’s Third Anniversary.

Happy reading on all accounts!

Laurie Edwards

Writer, Teacher, Advocate