Illness, Wellness, and Storytellers: Publication Day Musings
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What’s In a Treatment…
Earlier this week, I was fortunate to attend an event at Fenway Park (can’t ask for a better setting than that!) benefiting and celebrating the neuroscience department at BIDMC. On so many levels, it was a wonderful evening. I got to chat with one of my favorite medbloggers and BIDMC CEO, I met a fascinating and highly acclaimed memoirist, and spoke with all kinds of people doing creative things in health care.
The most exhilarating part of the evening was learning about the innovative research and treatments these doctors are working on, and the atmosphere of collaboration and care for the patient that guides it. Whether it was discussing yoga and dance therapy for Parkinson’s patients, hearing patients talk about stroke rehabilitation, or learning how noninvasive techniques can help patients with a variety of conditions, it was impossible not to feel the energy and potential gathered in that room.
You don’t need to be a neurology patient or even the friend or family member of one to appreciate these types of advancements. In fact, the idea that if given the appropriate time, resources, and environment researchers can get closer to developing more refined, targeted, and effective innovations for diseases is one that stretches across many disciplines.
By pure coincidence, I also stumbled across this Slate article, “Old Drugs, New Tricks” this week. Writer Darshak Sanghavi points out that in some of the major fields of medicine—like pediatric oncology, or cardiovascular disease—some of the most significant strides in increasing patient survival rates came from refining existing older drug therapies, rather than aggressively hyped new medications. Of course he points out cases where brand new drugs have made enormous (and unexpected) gains for patients, but his central point is a compelling one, and his thoughts about why some specialties are better equipped for the long-term, rigorous studies that make such refinement possible make a lot of sense.
As someone with multiple conditions of varying degrees of severity and treatment options, I find myself in an interesting position within this debate. When I was diagnosed with PCD and bronchiectasis a few years ago, my treatment regimen changed in many ways. While I had pretty much lived on steroids and all kinds of inhalers for most of my life (and spending weeks each year in the hospital and getting worse with each trip shows how well that worked out for me), I switched over to a system of rotating strong antibiotics. I still use inhalers and my nebulizer, but the steroids are no longer the first line of treatment. I also started daily chest physiotherapy, and that has made such a difference in my quality of life.
I mention all this because for me, some of the biggest improvements in my quality of life, and even my survival, are tried and true therapies. (This isn’t to say that some of my antibiotics aren’t newer generation, or that the vest I use when I can’t get chest PT isn’t a more modern version of the very physical and visceral pounding I get from my therapist, obviously.)
These things were already in existence and working well in some populations—but if it weren’t for advanced technology and research, I wouldn’t have known to use them because I wouldn’t have been able to get the correct diagnosis for such a rare condition. Without research and innovation, I’d still be chafing under the wrong diagnosis, living between hospitalizations, and causing yet more irreversible damage to my lungs.
(You can probably see now why the research I learned about the other night was so exhilarating, yes? Hope is an equal-opportunity phenomenon.)
So while my daily life involves many old-school techniques, my improved quality of life and my existence as a PCD patient speaks very much to new-school capabilities. It’s a collaboration between what we already know works for similar patients and what we’re beginning to understand about how specific cells and structures function—and based on what I learned the other night, it’s a collaboration that also stretches across all sorts of specialties and boundaries.
Clearly I can’t say if so many of us will ever have a cure for what ails us, but the more innovation and collaboration we have, the more we can refine treatments and understand the origins of our disease and target specific pathways, connections, and cells, the better. As the Slate article points out, it must be done in the appropriate way, and as recent events have shown me, when this happens, it’s a great thing.
In Control…
I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.
Not exactly the best feeling in the world.
I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.
And, as I may have mentioned before, I am somewhat of a control freak.
But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.
In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.
Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.
But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.
My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.
Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.
So in that sense, I’m pretty lucky.
In Control…
I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.
Not exactly the best feeling in the world.
I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.
And, as I may have mentioned before, I am somewhat of a control freak.
But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.
In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.
Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.
But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.
My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.
Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.
So in that sense, I’m pretty lucky.
Chronic Fatigue Syndrome—A Wake-Up Call
I read “Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’” in the New York Times with great interest.
Actually, it was more than just passing interest I felt. It was similar to when I read that Anheuser-Busch launched Redbridge, a gluten-free beer: relief. After all, if a mainstream beer company embraced the needs of the gluten-free consumer, didn’t that mean others would soon follow suit?
So when I read that the CDC released studies “that linked the condition to genetic mutations and abnormalities in gene expression involved in key physiological processes,” it buoyed me a bit. When I read that “some cases of the syndrome were caused when an acute infection set off a recurrence of latent infections of Epstein Barr virus and HHV-6, two pathogens that most people are exposed to in childhood,” I was intrigued.
Decades have passed since chronic fatigue was dismissed as “yuppie flu”—decades marked by residual skepticism and dismissal nonetheless—and understanding the biological origins of the condition has always been paramount in allaying these dismissals.
I don’t write about it often, but my personal history with chronic fatigue began when I was in high school and a case of mono felled me. For nineteen months. Nineteen months of fatigue that overwhelmed me (at first, I slept twenty hours a day); of pain in my neck and joints so severe I cried; of fevers and infections and a brain haze so profound I found it hard sometimes to type my name.
Eventually, doctors gave this siege a name: chronic fatigue, and the flare that began my junior year in high school lasted for several years. I know how fortunate I was to have doctors who identified and diagnosed it so quickly; sadly, this is not often the case, even ten years later.
My condition improved somewhat after those first few months, but it definitely changed things. I didn’t have the same stamina; more than that, I didn’t have the same faith or reliance in my own body.
A decade later, its presence still insets itself in my life, though I’ve been lucky in that I haven’t again had a flare like the one that swallowed up four years of my life. When it happens, I don’t always know the source of the deep fatigue, the brain fog that comes over me sometimes that makes my sentences clumsy and my muscles burn and ache: Residual effects of steroids? Not getting enough air? Lingering complications from adrenal insufficiency? Or chronic fatigue?
I tell myself sourcing these moments isn’t important; dealing with them and moving forward with everything I need to do is what counts. And I believe that. But I remember how bad it was when it was really bad, when chronic fatigue was life halting, not merely life altering—and I know there are so many people still in that life-halted state.
Which is why the news in this updated article—particularly given the fractious history that exists with the CDC in relation to chronic fatigue—is so important. Some highlights? Research using strong antiviral medications shows promise, and it’s an avenue that opens up options beyond population-based studies, which some advocates and patients fault.
Click on over to the link above and read the rest—see how far things have come along, and how much work there is to be done.
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.
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.
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.
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.
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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
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!!!