Category Archives: Chronic Illness

Primary Care and Chronic Illness–The Update

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Awhile ago, I wrote about the challenges of primary care when you are a patient with multiple (and rare) diseases…Or, as my friend Lyrehca says, when you are “clinically interesting.” I have specialists for several different body systems and they each provide fantastic care, but I don’t want to bother the lung guy with the GI problems, or the rheumatologist with the allergic reaction.

So, I embarked on a quest to find a primary care physician. I wanted my new doctor to be in the same hospital as all my other doctors, and finding a group that still accepted new patients proved daunting. Life, the book, and work got busier, and I let the search slide a bit. Then this summer I came down with mesenteric adenitis and was shuffled between specialists and eventually sent to the hospital. I came home re-committed to finding a primary care doc, someone who could have fielded that problem, and put my name down for an appointment five months down the road.

Well, that initial appointment recently happened, and it feels good to have someone coordinating all the moving parts of my care. My new doctor and I clicked; I felt comfortable talking with him, and I appreciated that he’d already become familiar with my case and had been in touch with my other doctors. Since they all work in the same system, they all have access to my latest test results and notes, and I’ve never had such efficient, streamlined care. The new doctor noticed some unusual lab results no one else had looked at—because they didn’t fall under their realm—and followed up on them. We made some important decisions about diagnostic tests for other problems, and I feel good about moving forward.

It’s been almost 20 years since I’ve had an official primary care doctor, and I told him I was worried about contacting the appropriate person for certain infections. Those of you with more experience negotiating this balance between primary care and specialists, do you have any feedback?

“With all you’ve been through you know your body best. Just trust your instincts,” he said. Sounds like a plan, indeed.

On a less personal level, I’d also like to circle back to the issue of universal health care in Massachusetts. As I mentioned before, part of the primary care shortage and the several months’ wait many patients find when they try to make an appointment is an unintended consequence of providing insurance to more people…and of course people without prior access to health insurance and preventive care are often most in need of primary care physicians. Anyway, according to this recent post on WBUR’s Commonhealth blog, Massachusetts now has the lowest rate of uninsured citizens in the country. This is wonderful news—now, let’s try and make sure each of those citizens can get an appointment!

It’s Always the Season for Books

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I hate to shop. When compared to all the other things I could be doing, the thought of spending time wandering around crowded stores seems incredibly inefficient to me, and I don’t usually want the item in question enough to warrant a trip. (Of course I also bring student papers to hair appointments and squeeze my laptop open on the subway, so clearly I have some issues with downtime.)

While my dislike of shopping is year-round, it kicks into high gear near Christmas; my proudest shopping moment of last year’s holiday season was when I realized I got every single gift I needed online, minus one.

I do have one huge exception, though. I love buying books and being in bookstores, and if left un-chaperoned, I could easily spend far too many hours and too much money. My husband fully supports (encourages, even) my book-buying binges, but I like it when we go together because I’m more conscious of that wily little word “moderation.”

I know the economy’s in terrible shape and holiday budgets are much tighter for most people, and I have a solution: Buy books. Seriously. They are affordable, durable, and can be used over and over.

Now, I know I am biased because I recently published my (affordable paperback)book Life Disrupted. But I’m making this plea not as a book author but as a lifelong book lover, someone whose favorite childhood Christmas present was the Little House on the Prairie boxed set of books, and who got a floor-to-ceiling bookcase for a 10th birthday present. I cannot go to sleep at night without reading, if even for 10 minutes, and I cannot leave the house without at least one book tucked into my briefcase.

The only gift I always buy in person for my nieces are books, and my gift to my oldest niece each Christmas is a hardcover book with an inscribed note. My brother told me she makes him read them to her throughout the year.

So buy books this year, and maybe even start a new tradition. What’s more, whenever possible support your local independent bookstores. They are more than simply places that hold shelves of books; between readings, lectures, and other literary events and book clubs, they foster a sense of community in neighborhoods. Like many independent retailers, they need our support and patronage more than ever right now.

For local readers, I just scored several great books on the sale table at Brookline Booksmith, and my two local favorites, Porter Square Books and Newtonville Books (both of which were awesome in supporting this local author with events) have tons of interesting readings and events this December and offer good discounts.

Obviously I believe books are a perfect gift for people of all ages and inclinations, but since this is a blog about illness, I do have to say that for people with chronic illness, books can take on even more significance. They bring the outside world into our homes when we can’t always leave, and they offer escape and entertainment when we need it most. I think part of the reason I was such a big reader at such an early age is because it was the one thing I could always do, no matter how sick I was or how many IVs I had in my arm.

I’m working on my own recommendations, but for now, check out this book editorial from the Boston Globe–it’s full of quirky selections for the readers in your life. Happy shopping!

Giving Thanks

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I was sandwiched between two people on a crowded subway trolley a couple of weeks ago when I smelled it. Instantly, my stomach tightened with rolls of nausea. I grabbed the silver pole next to me with whitened knuckles. Do not throw up. And in a matter of seconds, I wasn’t an adult on my way to work, I was a little kid on a cold November morning about to have the warm blanket placed over my legs in the operating room.

The woman who sat down next to me smelled just like anesthesia. I don’t know how to describe the smell accurately, but it is somewhat sweet and plastic-y at the same time. It is a very particular smell, and it gags me (obviously). Usually I am more prone to hear songs and associate them with a time or place than I am to associate smells, and I’ve never had a more visceral reaction to a smell than I did that day on the train.

It was fitting that this occurred on a cold, sunny November day. You see, when I was little and needed surgeries to drain infections from my head, ears, sinuses, etc, they tended to cluster around the holidays, the peak infection season for me. Also, we tried to plan surgeries for when I had a day or two off from school anyway so as to build in some extra recovery time. Accordingly, Veteran’s Day and Thanksgiving week were prime candidates, and in some particularly acute circumstances, Christmas Eve day also became a go-to surgery day. The sharpest details from these accumulated late fall surgeries are being asked to count backwards from 10 to one as the anesthesia mask was placed over my face, and the wrenching nausea that gripped me in the recovery room (I’ve since learned to ask for Zofran)—and that particular smell brings me right back to those moments.

So where am I going with the charming tale of anesthesia memories? Well, it’s two days before Thanksgiving and our house is starting to fill with much better smells: cornbread baking, sausage sautéing, cider mulling. These are the smells that should accompany November, and I’m happy to replace the surgery smells of my childhood and the inpatient smells of many lung-related holiday hospitalizations as an adult with them.

And so the traditional Thanksgiving post is tinged with special appreciation for where I am in this moment, and the people and circumstances who are part of that:

My family, who was there for me during all those surgeries and is there for me in so many ways today.

My husband, who is seriously amazing (and fairly obsessed with making Thanksgiving perfect).

My friends, who are funny, smart, caring and patient.

My readers, those who buy the book, show up at readings, or get in touch with me to share their feedback, and those who take the time to read this blog—without you, all this would exist in a vacuum.

My favorite reads and the wonderful writers, scholars, and bloggers who always give me something to think about.

My fabulous physical therapist, who gets up at 5am every day and fights gridlock traffic to show up at my house with a smile and deliver superb chest physical therapy.

My doctors, who actually communicate with each other and aren’t deterred by the lack of easy or obvious answers when it comes to this body.

My job and my husband’s job, because at the end of the day if we both still have them and have health insurance, we are fortunate.

And lastly, the fact that despite their many health problems, everyone I love is healthy enough to sit at the table this year.

Staying Employed When You’re Chronically Ill: Interview with Rosalind Joffe

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It is my pleasure to host today’s stop on the virtual book tour for Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!. I first got to know co-author Rosalind Joffe when I interviewed her for my own book, and I am excited to be a part of this tour—this book is incredibly informative and should be a go-to resource for anyone trying to navigate staying employed in the face of chronic illness. My interview with Rosalind follows:

1. I know you must get this question a lot, but it’s an important one—why did you ultimately decide to write this book?
RJ: I’d seen in my own life and from my client’s experiences that there is a fair amount of pressure for women with chronic illness, particularly married mothers, to stop working. Since I had found that continuing to work as much as possible when possible was essential to my own health, I wanted to encourage those who view this as I do by arguing against some of the prevalent myths.

2. Why the focus on autoimmune disorders in particular?
RJ: Primarily, it helped us narrow our focus. All of the issues we discuss in the book are relevant to any chronic disease or condition but it was too difficult to try to leave it that broad. It was easier to narrow it to since autoimmune diseases affect women 4 times as often as men and, usually between ages 25 -40 (prime childbearing and career building ages). It’s this confluence of factors that make the situation so problematic for women. Finally, both Joan (my co-author) and I live with auto immune diseases which made it easier to speak from and incorporate our own experiences.

3. What are some of the biggest fears or misconceptions women have about the workplace and chronic illness?
RJ: I think that women and men worry that they’ll be marginalized if others know that they have an illness. The reality is that it can happen regardless of how savvy you are. Women also worry that they cannot live with active chronic illness, have a demanding career and raise a family. Here, too, the reality is that it is very difficult and requires a lot of planning and taking a long view of situation, thinking strategically. Finally, many young women don’t think enough about what it takes to balance family and career when they’re choosing a career and that becomes even more difficult when illness adds into the mix. I suggest thinking carefully about your career options when you get a diagnosis and don’t leave it up to chance. I wish I had been smarter about this early in my career.

4. You write about developing a “warrior spirit.” Can you discuss what that means, and why it is so relevant to the issues of employment and living with chronic illness?
RJ: Actually, I worried about that phrase because I didn’t want the term to be interpreted that women should be more like men. It’s a term I use with my clients because I think that chronic illness can leave you feeling as if life is out of your control and can encourage passivity, particularly when you spend so much time seeing doctors and healthcare providers! I’m not suggesting that you become more combative. Rather, I am suggesting that you think for yourself, you seek options even in the face of opposition and continue to build your ability to be resilient.

5. A lot of my readers are younger adults who are just entering the workforce and trying to carve out a career path with the added burden of chronic illness. What advice would you give to the youngest members of the workplace in terms of things they should consider/look for in a career or workplace environment?
RJ:That’s a great question. First, think long and hard about what you love to do, even if you think it’s not your greatest strength, because that interest and passion will keep you going for the long haul. Consider other aspects of this career and how it fits your values and interests in life. When you think about a career choice that requires additional education or training, try to work in that field in some capacity so you can see what it’s like up close and personal before diving in. Choose a career that allows for as much flexibility as possible so if one job turns out to be a poor fit, there are other places where you can apply your skills. Most importantly, you will always be able to find work if you are good at what you do and bring value, so make it your mission to be the best you can be. You might not be able to work at the pace you would most like all the time or make the salary you dream of, but if you plan strategically, you will be able to continue to do something that has value and feels meaningful.

6. Lastly, you’re a patient yourself, and through the years you’ve faced many of the challenges and setbacks as your readers. What has been your biggest challenge in terms of staying employed? Would you say you’ve reached an ideal balance now?
RJ: That’s tough because there were so many challenges to staying employed. I didn’t think about my career in the long term early enough and I was always trying to make a job fit to my needs. My health waxed and waned (I developed several autoimmune diseases over the past 30 years) so it became increasingly difficult to plan. If I’d had a crystal ball 12 years ago when I had an ileostomy (curing the ulcerative colitis) and then went on MS medication (that slowed down the MS progression dramatically), I probably would have taken a path that would have left me more financially secure. But I’ve been lucky to find work that I really love doing and that I can do. No doubt about it, working for myself at home has made it much easier to keep working and I hope to keep doing this for a very long time.

Thanks so much, Rosalind, for writing this book and answering my questions!

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Just a quick reminder, while we’re on the topic of reading, that another great (and entertaining) edition of Grand Rounds is up at Musings of a Distractible Mind. Check it out!

Monday morning links–Election info and the hazards of the diabetic test-taker

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If you have chronic illness and read this blog, then you know why I think the health care vote is so important. (Check out my post on the female vote and health care for a quick refresher). Want more information? Check out this video on health care and the next president at vote.chronicdisease.org. Its message is compelling (and it also happens to be star-studded.)

While this next link doesn’t concern the election, I read this article this morning and had to link to it. As reported in today’s Boston Globe, a young woman with diabetes who was taking the GRE had her insulin pump mistaken for an iPod and was also told she couldn’t bring her testing kit and juice into the testing room. Check out the full story for details.

I can relate–it was a cold day in early November just a few years ago when my GRE proctor refused to allow me to bring my inhaler into the exam room with me (I was acutely sick at the time). Not the same situation, I realize, but certainly a similar fear of cheating that permeated the experience and overrode medical concerns.

Anyway, don’t miss your chance to cast your vote!

Politics, Sports…and Chronic Illness?

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I try to stay on point in my writing on this blog, exploring universal issues of living with chronic illness and discussing new research, policy, or insights from other writers and bloggers. But sometimes, personal interests and public issues intersect, and there’s been a lot of that happening lately.

I don’t usually stray into political leanings, but when it’s an election year and presidential health care policies have the potential to impact so many lives, how can I not write about the importance of the female vote when it comes to health care?

Similarly, I don’t usually write about sports. Now, I’m by no means an athlete—remember, I’ve broken fingers typing before, so you can imagine what an awesome combination me and a basketball court made—but I grew up with two older brothers so sports have been part of my life for as long as I can remember. I mean, I went to hockey, baseball, and football games before I was old enough for nursery school.

Plus, when you live in Boston, you can’t escape fan fever. Clearly Sunday’s game was a tough one for Red Sox nation, (though the Monday night football with the Patriots cheered us up somewhat) and the series with the Tampa Bay Rays was an emotional rollercoaster.

Why bring up a painful loss? Because while rooting for my team, I had the chance to watch Rocco Baldelli hit for the Rays. This spring, after a lot of tests and some tough symptoms to piece together, Baldelli was diagnosed with mitochondrial disease, which makes it harder for his cells to recover from even minimal exertion and can cause excessive fatigue.

Since Life Disrupted published this summer, I’ve heard from many patients and learned about many conditions I didn’t know much about, including mitochondrial disease. Despite our vast differences in symptoms and body systems affected, I could relate to a lot of what I learned, especially regarding the difficulty in diagnosing it and the fact that since it often manifests in children, it’s even harder to identify in adults.

(I had immediate flashbacks to doing homework for grad school while waiting in my pediatric specialist’s office, flanked by toddlers with croupy coughs and stacks of Highlights magazine.)

So at first, I was interested to see Baldelli because anytime a rare disease can get national exposure and awareness like that, it’s wonderful—good for general knowledge and education and hopefully, it’s also good for fundraising and research goals too.

But on a deeper level, watching Rocco’s at-bats reminded me of so many things I normally talk about on this blog: adjusting to new symptoms, negotiating setbacks, and balancing professional ambition with personal health needs. So many of us have had to be creative about our employment situation, from finding ways to work from home to switching jobs so we’re in a more flexible corporate culture. We seek ways to be successful and to contribute even when our bodies don’t work the way we want or need them to work.

Now think about Rocco’s situation, and just how much success and positive contribution depends on athleticism and peak physical condition. And think about trying to compete at his level when his body can’t do the things it used to do, the things he needs it to do. Talk about an adjustment.

In what I am sure will be an ongoing process with many revisions, Baldelli and the Rays are figuring out how to keep him in the game without exacerbating his condition. He doesn’t play in every game, and the time to rest and recover appears to be working since he had no problem knocking out some hits in a clutch position.

I’m glad to see that his diagnosis didn’t automatically mean retirement for Baldelli, and glad to see the Rays are working with him. After all, if there’s room for chronic illness in professional baseball, there’s some hope for everyone else trying to balance work and illness too.

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In other news, a new edition of Grand Rounds is up at Pallimed—check it out!

Women, Health Care, and the Presidential Election: Why Our Vote Matters

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In an election where economic woes dominate the conversation and health care platforms are discussed in terms of polarity rather than specifics, it is easy to see how the importance of the female vote when it comes to matters of health is undervalued.

But it shouldn’t be. After all, women make two-thirds of health care decisions and are consistently health care voters. They also constitute a key swing vote—60 percent of undecided voters are women.

In advance of the upcoming election and on the eve of the next presidential debate, the Partnership to Fight Chronic Disease and two leading political pollsters, Brenda Wigger of Voter/Consumer Research and Celinda Lake of Lake Research Partners, released these and other results of a large poll exploring the attitudes of female and male votes regarding health care and the presidential election.

The survey of 1500 likely voters found that while the economy was the number one major issue men and women care about, health care was the second issue in line, especially for women. As the discussion moved from macro global issues to personal and family issues, health care was the top personal concern, beating out terrorism, energy, Iraq, and so many other issues.

Candidates, are you listening?

What’s more, the target voter, the independent female voter (I count myself in this population), is especially focused on health care—65 percent of female voters say it is the major or one of the major issues in the presidential election.

While I found all of the results interesting, as a young woman, an independent voter, and a patient with multiple chronic diseases, some of the ones highlighted in today’s press conference call were especially resonant. Not only did 83 percent of voters express familiarity with chronic disease, indicating a marked increase in awareness of chronic disease, but when given a long list of items on a health care agenda, treating and preventing chronic disease is at the top of this list. That means chronic disease factors more prominently than such hot button issues as electronic medical records or medical malpractice.

Policy makers, are you listening?

As I know all too well, managing health is a costly endeavor. These days I flirt with postponing appointments and tests to save money, and spend more time paying and filing medical bills than I do any other kind. The fear of losing existing health insurance and the rising cost of health care that is the number one issue for me in this election—indeed the number one issue in most of my personal and household decisions—is also an especially intense concern among younger female voters polled(defined as women under 50).

So I can claim solidarity with these likely voters on so many levels: chronic disease is the dominant issue in health care (remember, 130 million Americans have at least one chronic condition and it costs us $1.1 trillion annually in lost productivity); like most likely voters I am insured but not confident in my coverage; and like 92 percent of voters, I believe that early diagnosis, education, and prevention of chronic disease will make a difference.

Despite the recent crisis on Wall Street, increasing energy prices, and so many other strains, many voters polled supported increasing access to health insurance to all Americans even if it meant raising taxes, even if those dreaded words “federal government” were involved. Since access to insurance means access to education and prevention, that says a lot about our priorities.

Health care reformers, are you listening?

Most voters surveyed didn’t think health care is enough of an issue in the presidential campaign. I agree, and like so many of them, I see this election as a real opportunity to address it.

For what it’s worth, being a younger chronically ill patient who cannot afford to lose my health insurance, someone who is in no way a desirable candidate for insurers, means Barack Obama’s health care platform is more appealing to me. In short, the mix of existing private insurance and expanded government programs for those without access is a much better position for me than the free market would be. Check out their platforms and make your own informed personal decision.

More than anything else, timing is critical here. The female voter matters so much in this election, and chronic disease is what matters most to this important demographic when it comes to health care. It’s time to make our vote count, and it’s time for our leaders to demonstrate that when it comes to chronic disease and prevention, they are listening.

Language and the Patient Experience: The Follow Up

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I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!

Tuesday Reading

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Need a distraction from the financial chaos? Grand Rounds is up at Monash Medical Student. This week’s theme is “Medicine and War.”

In other places around the Internet…

Finding the right doctor. Believing knowledge is power. Do these and similar topics, like what it means to be “healthy,” sound familiar? I talk a lot about them here, so I was thrilled to see today’s NYT’s Well Blog and the Science Times, where “Decoding Your Health” compiles a series of articles and essays on these very issues. Definitely worth a read!

More on language, medicine, and the words we choose to follow…

A Question of Re-Vision

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This week, as I am buried in essay drafts and other deadlines, I can’t help but think of the little speech I gave my students about the drafting and revising process.

“You’re not expected to simply revise typos and neaten up sentence structure,” I told them. “I want you to be willing to re-vision your papers and the content of your argument.”

Re-vision, not revise.

Build on possibilities, not problems.

Every September I latch on to the idea of a fresh start, the same desire for a new beginning (“this year will finally be my year”) that has escaped me since childhood. Usually, I’m so focused on the prospect of a calamity-free year that by the beginning of August I am ready for fall.

This year, a summer filled with the usual infection-y mess and an assortment of unusual new medical issues left me burnt out with appointments and tests, sick of spending money on chronic health issues, and physically and emotionally drained by August’s end—just when I should be refreshed and energized for a new academic year.

So that’s how I started the semester, apprehensive and longing for the summer that wasn’t, and supremely doubtful a clean September slate was in my future.

I can’t change (or revise, as it were) the blur of symptoms that was most of my summer, nor can I make the answers that explain the symptoms come any easier, but I can re-vision my situation.

And that’s what I’ve started doing. I am less concerned with immediate answers than I am with accomplishing necessary tasks for each day. I’m enjoying a new schedule and a new routine and even though I’m juggling several different projects, I am happier when in constant motion. I’m prioritizing my many doctor appointments so the most essential ones get my time and energy (and, more importantly, don’t draw out my resentment). I’m open to the idea of a fresh start, but I’m realizing I don’t need one to keep moving forward.

It’s similar to the idea of keeping an open mind when dealing with doctors I wrote about recently, as well as the importance of changing the chronic routine when it comes to wellness and nutrition.

But this September, I’m not just thinking about doctor-patient dynamics or diversifying our whole foods repertoire. I’m talking about something more fundamental: re-visioning the possibility of, well, possibilities.

And with that, my August angst seems like such a long time ago.