A Chronic Dose | A blog about chronic illness, healthcare, and writing.

Grateful...

2009-11-22T19:40:00.000-08:00

Even with my currently muted sense of smell, I can tell good things are happening in our kitchen right now. The plague of November 2009 continues to lay siege to my lungs and my productivity, which could spell trouble for the Thanksgiving dinner we are hosting. (And no, it is not H1N1; I was able to get my vaccine at a recent lung appointment.)

Luckily, my husband loves to cook and knows the value of early preparation when we’re in the midst of an infection. Gluten-free corn bread is cooking, sweet potatoes are roasting for a bourbon-walnut sweet potato mash, and other assorted casseroles and desserts are in various stages of completion.

Like so many others, I find it impossible to avoid reflecting on the things for which I am grateful this time of year. I can’t help noticing that these annual November posts invariably include food, like this one on the evolution of a gluten-free Thanksgiving.

Holidays are largely defined by the traditions we have, and particular foods and recipes form part of those traditions. I am grateful that over the years we’ve been able to blend long-held traditions with gluten-free ones. I love that my parents are excited to make a side pan of gluten-free stuffing to go along with their famous dish. I love that I addition to the usual pies, we will have a gluten-free almond cake with homemade cinnamon ice cream that tastes a lot like eggnog. (I also love that my husband made said ice cream in between days of running errands, cleaning, and ferrying my nebulizer from room to room.)

And I love that being gluten-free on Thanksgiving isn’t a big deal. In our group we have celiac, lactose-intolerance, allergies to peppers, onions, nightshades, cheddar cheese, and chocolate, as well as the challenges of type 2 diabetes. We all have some safe foods and some foods we know to avoid, and we will all be satisfied by the end of the meal.

It has been a long year, one filled with exciting developments but just as many challenges and setbacks. It has been a long year for so many people around me: illness, loss, economic stress, uncertainty.

I was thinking about all of this the other day when I skimmed some of the e-mails I get from an online disease community for celiacs. I don’t participate much, but I appreciate the advice and recipes many group members offer the newly-diagnosed. Usually people are pretty upbeat, but there’s one voice that is consistently negative. Work dinners, picnics, holidays, restaurant trips, etc—the focus is always on what this person cannot have.

I know sticking to a gluten-free diet can be expensive and difficult, and I know it is a huge adjustment. I know that adjustment is a lot more challenging around the holidays, especially if you’re newly diagnosed. Six years ago, I was diagnosed days before Christmas. Try being gluten-free for a mere four days when you’re not sure what is safe and trying to eat at an Italian Christmas Eve, where six of ten entrees contain pasta and the other four have flour of some kind.

Nothing says bountiful Christmas dinner like a plate of olives and peppers from the antipasto. So I get it. I really do.

I only wish I had the grace and eloquence to reply to the negative posts along these lines: While I am not grateful I have celiac, I am grateful I know I do and can do something to feel better.

That was the essence of the reply someone posted last week, and it is a sentiment that looms large in my thoughts these days.

I am grateful that in light of other medical problems that do not have such an immediate and definitive treatment plan, I have something I can manage with my diet. I am grateful that I know what’s going on (especially since I never presented with GI symptoms) and that I am no longer throwing my autoimmune system into a frenzy by eating foods I cannot process. I have control over something, I have choices and options I can make every day to help improve my health.

As many of you with chronic illness can attest to, that does not usually come easy.

With viral plagues and flu fears and feeling like no matter how hard I try to get air it will not come, having that kind of knowledge and control is even more important to me. And knowing people around me are dealing with far more right now, emotionally and physically, I realize how precious this is.

As many of you know, I’ve spent many holidays in the hospital. Usually, just being present and accounted for at the Thanksgiving table is enough for me. This year, knowing the people who matter to me will be there, despite a lot of serious challenges and stress in their lives, is what counts.

We might not be able to eat everything there, and we might not all feel too wonderful. But we’ll all be at the table, and that’s enough for me.

Tales from the Crypt…

2009-11-16T05:58:00.000-08:00

Contrary to a certain famous modern poet’s assertion, in my world November is the cruelest month. Okay, it’s arguably a toss up with December-February, too, but in terms of the lovely cycle of getting sick, falling behind with work, and missing family functions and/or social engagements, November is right up there with the best of them.

This past weekend was no exception: the tightened chest and spastic cough of Thursday night developed into the mini-plague that prevented me from attending a long-awaited family function Sunday morning.

(It’s not H1N1, though. Still hoping I avoid that long enough to get my H1NI vaccine.)

Anyway, I had to make a phone call early Sunday morning to let relevant parties know I would not be able to make it. My throat was hoarse and scratchy from coughing, and my voice itself was fairly faint because I wasn’t moving much air. It was definitely Crypt-keeper quality (as opposed to my other alter-voice, Darth Vadar, which is a little deeper and usually sets in a good two to three weeks later.)

My two-year-old niece loves the phone these days, and when she heard it was me on the other end, she wanted to say hello.

I started talking (read: rasping) to her as best I could, asking the kinds of questions two-year-olds are usually pretty good at answering.

Pause…pause….pause….

“Broken. Mama, it’s broken,” I heard her say.

“Not working,” she muttered, her voice growing muffled and distant as she pattered away.

Couldn’t have said it better myself.

On H1N1, Vaccines, and Differing Views

2009-11-11T07:18:00.000-08:00

I haven’t written too much about H1N1. Partially, this is because as an avid reader and headline scanner, I suffer a bit from H1N1 fatigue. From local news reports to national updates to reminders and policy talk at my job, H1N1 is everywhere.

But it’s also because everyone seems to have an opinion about the H1N1 vaccine. And lately it seems I can’t go anywhere without getting a hearty dose of other people’s strong opinions about it in my face.

It’s a controversial topic for many, and I get that. I respect other people’s right to make their own decisions about their health. The thing is, I don’t need to agree, or be convinced my own decision about my health is wrong. So when I’m getting my blood drawn and stressed about getting to work on time because the line is long and my veins are wily and unyielding, I don’t really need a lecture from a health care professional on how flu shots are full of toxins and poisons we shouldn’t put in our bodies. (While flanked by posters advocating flu shots, by the way.)

You might be drawing my blood, but that doesn’t mean you know anything about my health or my personal beliefs, or how I might interpret your unsolicited “advice.”

The same goes for the forwards and attachments that appear out of the ether in my inbox warning me against the evils of vaccinations.

Because you know what? I would do anything for an H1N1 shot right now. For months every single doctor and nurse on my medical team has repeated the same mantra: I am absolutely high risk and should get the shot. The problem is, they just aren’t available yet. I have reason to believe I can get one in the next month, so if I can avoid infection until then, I will be in good shape.

At the same time, it is not as possible for me to read the headlines but stay on the sidelines. Students in my classes now have the flu, and each time I get an e-mail about a 104-degree fever I worry about them, and about how many of us were exposed.

I am not a paranoid person, and considering I spend 7-8 months a year continually sick, I am pretty used to infections. Generally speaking, I take reasonable precautions and reasonable risks with my health.

After I read this NYT article on parental views about the H1N1 vaccine, I knew I couldn’t resist the pull of breaking the silence any longer. In discussing society’s willingness to be vaccinated during twentieth-century epidemics like polio and smallpox, historian David Oshinsky is quoted as saying, “People had a sense of risk versus reward and listened to public health officials.”

That line really resonated with me, because that’s how my doctors and I have approached the H1N1 shot. For me, the risks of contracting H1N1 are much, much more severe than any risks of getting the shot. (And yes, I get the seasonal flu shot every year without incident, and since they are made the same way, I personally do not have fears about the production of H1N1 vaccines.) Vaccination and communicable disease prevention are some of public health’s greatest triumphs, in my view, and I am incredibly grateful modern medicine gives me and my sub-par immune system some protection.

After all, otherwise healthy people face serious complications from H1N1, usually in the form of secondary bacterial infections (pneumonia) that linger because the flu virus damages cilia in the respiratory tract.

I don’t have working cilia. I also have bronchiectasis, which increases the likelihood of bacteria and mucus festering in my airways, causing severe exacerbations. That sounds like an awesome combination, doesn’t it? I can catch a cold in September and not recover until March, and I’m not exaggerating. I’ve almost died from infections on multiple occasions throughout my life, and have spent weeks in isolation units of hospitals. There are few antibiotics left that can squelch the secondary bacterial infections I am so good at growing. As much as my friends joke I need to live in a bubble, I can’t.

But if there is a way for me to prevent contracting H1N1, sign me up. This is the decision that makes absolute sense for my individual circumstances, and it is one every medical professional I know espouses.

I know every person’s situation is unique. For example, I know that for patients with certain autoimmune conditions, the risks of getting a flu shot are very real and very serious, and I would never presume to convince them otherwise.

But that’s just it—these are the kinds of conversations that should take place between doctors and patients, between the people who know the most about an individual’s medical history and constellation of risks. When people do ask me, I am always honest about how I feel about the shot for me, but emphasize I am not a medical professional.

I’m not saying I’m unwilling to engage in dialogue or debate about this, but there’s a difference between informed views on subjects and imposing personal views on other people. I know vaccination in general is a hotly contested topic right now, and there are so many voices on both sides. I don’t want to start shouting. Honestly, I just want to get my shot and get through this winter.

So please, please don’t assume to know the particulars of my situation and tell me I am crazy to pump my body of toxins. No matter how strongly I feel about opposing viewpoints on this, that is not a productive way to have a conversation.

And the way I see it, I’d be crazy to turn down the chance to protect my dodgy lungs.

Disappointment: The Intellectual Opposite of Hope?

2009-11-05T12:14:00.000-08:00

When my agent was shopping my first book out to publishers, it was an incredibly tense time. I’d done all I could do to set myself up right, and now the decision was out of my hands. For a control freak like me, it was an uncomfortable position.

But what made it harder was how much I felt hinged on getting this book under contract. In my mind, everything else I wanted to do depended on getting this deal for this book at this particular time. The next book I wanted to write, and the book after that, and the book after that? They could only happen if this book happened. The fledgling freelance career I wanted to build out? I would have much better standing with a book under my belt. The more stable academic and research positions my newly-minted MFA hinted at? You know what they say—publish or perish. And my very identity as a writer? Well, writers write things, right? Things that get published.

Of course none of those static boundaries were true, and my life and career would have gone on had things not worked out the same way. It is easy to say that, though, because I did get what I wanted then. The script I wrote for myself, the one so meticulously reliant on each step unfolding just so, went (somewhat) as planned.

But what are so much harder—and, unfortunately, so much more common—are the times when we do plan and work towards something and set up a script for ourselves that does not come to fruition. We want so desperately to accomplish a certain goal that it becomes difficult to see ourselves in any other reality. I see this in my students who are applying for jobs, my consulting clients who are applying to schools or trying to secure agents, and of course I see it so often in the lives of patients. We want a last-ditch medication to do all the things it promises it might; we want the much-anticipated surgery to be 100 percent successful; we want that super-star specialist to give us the answers we need to hear.

We carefully construct this eventual outcome, and we cling to the promise of that better reality because that’s what we need to do to push through all the obstacles and hard work necessary to have a shot of getting there.

We hope for the best, because it is not unreasonable to hope for good things.

Because we have hope we can keep sending out submissions while the editors’ rejection letters accumulate, or the job offers don’t appear, or the letters that arrive in the mailbox are too thin. Because we have hope we work through the side effects of medications, or gear ourselves up for the major surgery and lengthy rehabilitation, or undertake medical interventions with high risk and limited chance of success.

I’ve often heard that the opposite of hope is despair. I don’t disagree with that, but I think the situation is far more nuanced. In the immediate moments of bad news, setbacks, and realizations that what we want is not going to happen, despair is real, and it is palpable. It is the moment when hope does not seem possible. It is an innate emotional reaction, one that manifests itself in different ways: tears that come without warning; numbness; a feeling of emptiness. It is encompassing and isolating. It pulls us off our center of gravity.

But there is an intellectual component to an otherwise emotional experience, and I think that is where disappointment comes into play. Disappointment is not as overwhelming as despair, but it makes demands of us. We have invested so much time and energy into one path, and it didn’t work out. Now where we do we channel that energy and momentum?

It’s a question of readjusting our expectations, and re-calibrating our goals. Whether it was getting a certain job, having a successful surgery, or any number of other realities, when we envisioned the “after,” we saw things unfolding a certain way. We have to write ourselves a new script, and in our disappointment, we don’t always want to do that. New deadlines need to be set, new strategies need to be formulated.

Sometimes, if we’re lucky, our re-writing is only temporary. Sometimes, it is life-changing.

I am often amazed at the capacity we have to hold out for the best possible outcome even in the face of very low odds: when early indications and test results don’t look promising, when other people’s envelopes already arrived and we are still waiting, when it has been three months and an editor hasn’t gotten back to us, or deep down we know we’re not really feeling any improvement on a new medication but we resolve to give it more time.

This capacity for hope is wily like that. It is stubborn, sometimes willfully so. But because of that, eventually we are able to envision other possibilities and are willing to pick ourselves up and start again.

Static

2009-11-01T19:24:00.000-08:00

Things have been a little crazed lately. There’s been a lot of health-related static taking over the scene offline, and on the heels of my last post on priorities, I’m trying to strike a balance.

I have stories to tell, but sometimes the stories that most need telling need the longest time to settle, so their many threads come together in a way that is cohesive, not chaotic; so the story is tempered and not reactionary. And sometimes the stories that matter the most are not always solely ours to tell.

While my posting has been light the past couple of weeks, I have tried to keep up with blog posts and headlines. No matter what else is going on and how many roles I find myself trying to manage, I will always be a reader.

So in lieu of the many posts swirling around that are not quite ready for editing, I offer instead a smattering of headlines that cut through the static this past week.

I’ve seen a number of stories on the new research that suggests a connection between chronic fatigue syndrome and a retrovirus, and I was pleased to see this news article, in which pain advocate and For Grace founder Cynthia Toussaint is interviewed. I’ve interviewed Cynthia several times regarding pain and gender, and find her story compelling.

I spent a lot of time the past month researching early AIDS activism and its relationship to other political and patient movements. I have a few students in different courses researching and writing about various aspects of HIV/AIDS right now, too, so it’s been an interesting time of intersection. As such, I was particularly interested in this NYT article, “Obama Lifts Ban on Entry Into U.S. by HIV-Positive People.”

According to the article, “The United States is one of only about a dozen countries that bar people who have H.I.V., the virus that causes AIDS.”

Now, I could write several posts on this topic (give me time) but I’ll start with the obvious: it’s about time that archaic guidelines based on fears and lack of knowledge/understanding of the disease were updated to reflect the realities of the HIV/AIDS and the respect that patients living with it deserve.

And moving from news and policy to the relationship realm, I spotted this submission in the Boston Globe’s Love Letters forum: “She Has Cancer and I Want Out.” A cursory glance at the headline might warrant immediate reactions, but read on: I agree with Meredith Goldstein that the larger issue here isn’t the cancer, it’s the letter-writer’s inability to be honest from the get-go.

And with that, another weekend is almost over, and another week of headlines is about to begin.

Priorities

2009-10-22T13:40:00.000-07:00

As I sit here and type this, I am acutely aware of my work e-mail accounts that I should check, and the client I need to respond to, and that article I bookmarked this morning that could be useful for my book. I’ve neglected Twitter woefully the past couple of days, and I’m late getting my writing group this month’s submission.

Priorities.

I know it is universal, this daily push and pull between the tasks we need to do (and the hierarchy that exists when we need to do several things) and the things that in an ideal world, we’d able to do or want to do. We make countless small decisions each day that reflect this notion: to read the newspaper or respond to an e-mail, to eat lunch at your desk rather than taking a short break and getting out of the office, to look over work on the train rather than zoning out or reading for pleasure.

What I’ve come to appreciate lately is that line is unbelievably relative—what you would do on a normal day is of little significance when major crises happen. You do what you need to do when people in your life are sick or need help or experience loss, just as you throw normal routines and schedules to the wayside when you experience your own crises, losses, or disruptions. In the immediacy of the moment, there are things that simply matter more.

But that’s the obvious part. What’s more complicated is the gray area in between the everyday and the extreme, when there are many conflicting priorities. Don’t get me wrong, I don’t know a person out there who doesn’t (at least on occasion) find the balancing act of multiple priorities difficult to manage. I honestly can’t imagine how often parents must face these decisions, but I know that the hierarchy of priorities gets turned upside down when you have a family.

But I do think that any type of chronic illness adds a unique layer to an already complex terrain.

As a minor example, I canceled chest physiotherapy the other day because I was feeling terrible (unrelated reasons) and just couldn’t stomach the thought of a half-hour’s worth of clapping. I wanted rest and I wanted peace. Yet by the very next day I was much more congested and wheezing on both my inhale and exhale, and knew that not having chest PT made a difference. Do I regret the decision? No, because in that moment, other health concerns outweighed the needs of my usually demanding lungs.

Decisions that might make so much sense from a financial, professional, and emotional standpoint sometimes conflict with what makes the most sense from a physical standpoint. There are all these reasons to take on a new challenge, but sometimes no matter how many compelling reasons there are to do something, the difficult answer comes down to this: what is good for the body and the mind do not always correspond. Sometimes the long-terms physical consequences of decisions are not worth the short-term gratification.

Of course, the reverse holds just as true. Sometimes it is more important to take the risk, to have that experience, than it is to miss out on it. Speaking as a girl who needed multiple doctors’ letters and lot of legwork to prove I was healthy enough to travel abroad when I was accepted into an Irish university, I can vouch for that.

And sometimes it is more important to be there for someone else even if it comes at the expense of your own body or comfort, because those memories are what people carry with them. Those memories are what you carry, too.

This all makes me think about I conversation I had on Twitter about H1N1 vaccinations recently. When asked how I felt about getting one, I said that it made sense for my individual circumstances—I am in a high-risk category, and all infections hit my lungs harder to begin with. I’d rather deal with the consequences of the shot than take a gamble with a flu virus that can cause serious (sometimes lethal) secondary lung infections.

But, these are my circumstances and my health priorities and might not apply to you for your own individual reasons.

In the end, I think most of us face so many choices that force us to weigh benefits and risks. From choosing time with friends over work to choosing certain medications over others due to different side effects, very little is without calculation…and the line is always changing.

But that’s what keeps things interesting, right?

These Three Things

2009-10-13T11:28:00.000-07:00

It was a cold, rainy, dank morning in Boston today. Since I am stubborn and would rather put on another layer of clothing than admit it is time to put on the heat, it was an especially cold, dank morning in my upstairs office. (Update: I have since relented and turned the heat on; when I repeatedly stopped typing to rub my hands together, I decided enough was enough.)

Anyway, I had my music set to shuffle when a song from David Gray’s White Ladder started playing. Between the dreary weather and the music, I was immediately transported back to my year in Dublin, when that album was immensely popular and I would listen to it on repeat in the tiny living room of my apartment. David Gray was the soundtrack for train rides to Galway and Belfast, for spelunking trips and jazz festivals, for marathon paper-writing sessions and impromptu dinner parties.

In those days, I wanted time to stand still. I loved Ireland, I loved the friends I made and the classes I took, and I even loved the way my lungs responded to more consistent weather. One academic year was not long enough, and from the first September week I unpacked my bags and walked down Dame Street to Trinity College Dublin, I dreaded the June day that would take me back home.

Everything was an adventure, and the unpredictability of that was enthralling. It was so unlike my normally intense, over-committed schedule and my innate tendency to plan. I didn’t have answers, and I didn’t need them.

And here I am nine years later, listening to David Gray and the sound of the rain while I type away. This time, I smell herbal tea, not the smell of hops from the Guinness Brewery nearby, and the morning din is punctuated by dogs barking, not the bells of Christchurch Cathedral across the street.

Most notably, right now I would do anything to make time move faster. If I put my head down and just make it work, then before I know it spring will arrive and I can exhale again. I will get through the long winter months whose infections and setbacks already have their tentacles wrapped around me, months that have me holding my breath, steeling myself for what they might bring.

I will make the deadlines and finish the projects and the early mornings and late nights and weekends will blur into one composite as they recede into the background. In my research work I am asking so many questions I do not know the answers to yet and that is a good thing but it leaves me unsettled. A few more months of parsing the information out and who knows, maybe I will have answers. Or maybe I will just have more questions.

There might be more answers to major decisions that take too long to sort out, decisions with no easy solutions but lots of potential.

If I start to think about all of this, I get overwhelmed. Instead, I try to focus on the present, on today’s To Do list and today’s set of concerns and challenges. I cannot fast-forward through until spring anymore than I could freeze time and stay in Dublin nine years ago. I didn’t want to plan things back then, and I have very little control over planning a lot of things right now, and the irony does not escape me.

I came across a quote recently (and yes, it is up on the big combination board of chaos) that reads:

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for…” (Tom Bodell).

I do not lack for these in any category, so maybe that’s the answer I need to stay present.

More Narrative Medicine and Organized Chaos

2009-10-08T08:20:00.000-07:00

I figured if I am going to write about the state of “organized chaos” in which I’m trying to just make things work, I should provide some details.

Behold:

See that line of writing at the top of the wipe board? It really does say “There is nothing as clarifying as a deadline,” and I really do find myself looking up at it, particularly during those very late nights or absurdly early mornings when the clock and my physical capacity to finish the job are engaged in head to head combat.

The Stickies application on Macs? I would be lost without their color-coded power to organize my day, my thoughts, my lesson plans, and my research questions.

And yes, we have bookshelves. Bedrooms and home offices and even whole closets full of bookshelves, but after my marathon summer of research, we need more. Plus, I like to have my files and sources close at hand when I’m writing.

Anyway, looking at my slightly embarrassing stack of books reminded me of a post I wrote on narrative medicine. Plus, we just happened to talk about Jerome Groopman and Atul Gawande in one my classes today, and it occurred to me I haven’t updated my list of recommended titles in a long time.

Not all of these neatly fit the narrative medicine bill, but they are all about the human experience of illness in some way or another, and all are fascinating:

Carl Elliott’s Better Than Well: American Medicine Meets the American Dream: a really interesting philosophical look at not just cosmetic surgery but the whole idea of the self we present to society and the society that passes judgment on the physical self.

Roy Porter’s Blood and Guts: A Short History of Medicine: I love everything I’ve read by Roy Porter, including his 800-page The Greatest Benefit to Mankind: A Medical History of Humanity. This slim volume packs a ton of information on medicine throughout the ages in a compelling, easily digested way.

David Rothman’s Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making: So this one is a bit more dense and scholarly than others, but it is a great read. For me, it helped me contextualize post-World War II medicine and the development of modern clinical trials, research, and patient rights. I have a much better grasp of current ethical situations and challenges now that I have historical context.

Dorothy Wall’s Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome: Wall does a skillful job blending personal experience and anecdotal reflection on living with Chronic Fatigue Syndrome with extensive research and interviews on the political and scientific controversies around naming, diagnosing, and managing the condition.

I’m always interested in new titles, so feel free to add your own suggestions to this list.

Just Make It Work

2009-09-29T12:30:00.000-07:00

One of the wisest people I’ve talked to is Vicki, the thirty-something patient with cystic fibrosis I interviewed extensively for Life Disrupted. Chapter Seven (“Salient Suffering”) details a conversation we had about suffering:

“For years, people have told her [Vicki] how brave she is, how strong and resilient she must be to endure the many complications of her illness. They are likely referring to her ever-present cough, her intrusive feeding tube, or her very basic struggle to get enough air…Some people assume that by virtue of these physical symptoms, Vicki is somehow naturally equipped to handle them. She disagrees with this all-too-common assumption…She puts up with the disruptions and the bodily complaints because she has to, something perhaps healthy people don’t always consider.” (42)

I had a somewhat similar conversation with Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, for a different project. You’ll hear more about it down the road, but we talked a lot about cancer mythology and the idea that having cancer makes you stronger, or more spiritual, or more ____(insert adjective of choice here).

What if you were already strong before cancer? What if you endure it all because the other option is not enduring it and knowing you might die?

Anyway, I had all of this on my mind this weekend after talking about work with a friend of mine.

“It’s amazing what you can do when you have no choice,” I said. It was a light-hearted conversation about work ethic, but my smile didn’t mean I wasn’t completely serious.

And it’s true. When you have obligations and deadlines it doesn’t matter if you’re overcommitted or tired or would rather get home earlier—you get it done. I think pretty much everyone from all walks of work life can relate to that.

My desk at work is pretty much empty; everything I need is in my laptop or my briefcase. Years of hospital packing have conditioned me to have everything I need to be able to work at all times with me wherever I go. But my office at home is the opposite. I spend more time there (a couple weekdays, most weeknights, and weekends) and it shows. My desk area is the epitome of organized chaos—folders and papers and notes and staplers and binder clips and books and coffee cups litter to desktop, flanked by stacks of folders and more piles of books (and often, dog bones and half-chewed tennis balls) on the floor.

Above the desk hangs a combination magnetic wipe board/bulletin board, adorned with post-it notes, quotes, forms, phone numbers, etc. At the very top is a quote one from one my graduate school professors. It is simple and precise, and I find I need to look up at it every day:

“There is nothing as clarifying as a deadline.”

Writers, I am sure you can relate to this, that you have stayed at your computers until 3am or gotten out of bed when it is still dark and skipped meals and plans and, oh, entire weekends or vacations, to meet your deadline. When you want something badly enough, you make it work, like this writer I’ve followed for a couple of years, who steals every possible chance to work on her writing: before work, after work, and every weekend. Her book recently published.

It may have been born out of a writing workshop, but again this quote is far more universal. Even when it isn’t easy or doesn’t even seem possible, we make our personal definition of a “deadline” work: the mother who was up all night with a sick baby still goes about her day with no sleep; the working parents with crammed schedules make it to the teacher’s meeting and deal with the work consequences when they should be going to bed; the financially strapped student takes on another part-time job while juggling classes and internships and expectations from so many people.

It is amazing what you can do when you have no choice. It is not always ideal and it is not something you can sustain forever but sometimes you just have to take a deep breath, vow not to think about it too much, and plow through it. It could be finishing grad school, or completing a medical residency, or working on a huge client project. Or it could be dragging yourself through the machinations of your day when all you want to do is sleep.

When it comes to health, I agree with Vicki’s sentiment that much of what we do as patients is because the choice not to do it is simply not viable. I do not think moral attributes need to be part of what is largely pragmatic.

Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face. For example, we might not take that sick day when we’re feeling under the weather with “normal” stuff, the same sick day healthy people might take, because we know that while we feel miserable with this cold or headache now, we might really need the sick day for pneumonia or a severe flare. Necessity dictates that we make our decisions based on a different rubric. Sound familiar?

We might totally over-commit in the moment and pull long days when we’re feeling okay because we know our ability to be productive is not in our control when we get worse. How many times have you been there?

I can’t help but think about the time I had to facilitate a three-hour graduate school seminar fresh from a hospital discharge. By “fresh” I mean I bargained for a morning release so I could make the class on time, changed back into the clothes I’d worn to the ER seven days earlier, and had my (very skeptical) mother drive me the few city blocks from the hospital to my campus. In my haste to get my materials together and my exhaustion from the hospitalization I forgot to take off my hospital bracelet, and I know I sounded terrible. It wasn’t ideal and it certainly wasn’t preferable, but I got it done. I knew there would likely be other times in the semester when I wouldn’t be released in time, and I couldn’t afford to take an incomplete in the course.

It may sound like a crazily stubborn thing to do, but I didn’t see a choice at the time. Or perhaps more accurately, I knew all too well what it felt like to really not have a choice, to be stuck in that hospital bed, and it wasn’t an opportunity I was going to squander. Accountability is still important, even when you're not feeling spectacular. I bet you can relate to that.

In the end, maybe this circuitous post is really nothing more than a pep talk for everyone out there feeling a little overwhelmed or a little unsure of how you will reach your goals but you know somehow you will. When I look at the quotes I've collected here, I am glad there are people who have been there who can remind me of that sometimes. Or, you know, today.

In the Headlines, In Real Life

2009-09-23T18:55:00.000-07:00

My writing may be a little more erratic than normal right now, but I still try to stay on top of the headlines. It’s the journalist in me; a day doesn’t feel right if it doesn’t start with skimming the newspapers, no matter how early. Every now and then, I come across stories that directly resonate with what’s going on in my own life.

As a New Englander, I am acutely aware of rapid and drastic seasonal changes and their effects on my lungs. I suffocate in humidity, cold winter months mean lots of infections, and the gray area between summer and fall and winter and spring are predictable only in their unpredictability.

I steadfastly maintain two truths about the weather and my health: my lungs are as accurate a barometer of weather changes as an arthritic’s joints, and the reason I did relatively well when I lived in Dublin was because although the weather was consistently dismal, it was consistent. No huge swings, no choking heat, no bone-chilling lows.

Anyone else sensitive to weather fluctuations?

Now, as I wrote awhile ago when I started this blog, I do not have asthma. However, when I read this NYT article on asthma and weather changes yesterday, I nodded along in agreement. The study found it is not just environmental or allergic factors that contribute to asthma symptoms:

“The study authors noted that many patients are well aware that weather fluctuations influence their asthma symptoms, but this is the first study to document the effect. In addition, it wasn’t just cold weather that triggered asthma problems but temperature increases as well.”

It’s what I’ve always known about my some of my own lung symptoms—wheezing, congestion, etc—even if they are caused by bronchiectasis exacerbations and PCD. Right now, I’m sitting here in summer-like conditions with newscasters warning of a big chill tomorrow—but I already knew that was coming. I could feel it in my chest.

***
Switching gear a little bit, I was so happy to see this wonderful newspaper article about the Chronic Illness Initiative at DePaul University. I have strong feelings about chronic illness and education. From students being proactive, anticipating their needs and problems, and communicating regularly to faculty and administration being flexible and accommodating, there are many steps we can take to ensure that students with chronic illness achieve their educational goals.

Luckily, the Chronic Illness Initiative (CII) is an institutional resource that helps both students and faculty navigate these complicated issues, and enables students to complete their degrees at an appropriate pace for their medical needs.

I’ve written about the CII before, but this recent article was particularly compelling to me because I spoke at a Symposium there last spring and was fortunate enough to meet several of these students, including some interviewed in the article. I was impressed with their commitment to education, but also with their enthusiasm for the CII itself.

Even more, this fall I’m actually teaching an online class through the School for New Learning at DePaul, the same school that operates the CII. It’s a class that explores how people with chronic illness exist in an otherwise healthy world (the personal and institutional challenges), and there is definitely crossover between the goals of the CII and course content.

It’s a great article, and personally, it is neat to see when headlines and real life intersect.

On Invisible Illness

2009-09-15T13:57:00.000-07:00

This week is Invisible Awareness Week, and my post about it is a day later than I wanted it to be, which is right on par with the way things are going right now.

In fact, I wasn’t planning on just posting about it; I was scheduled to present a virtual seminar this week and due to intense schedule conflicts, and with great regret, I had to cancel. (I’m already percolating ideas for next year, so we will see…)

I’d originally planned this post to be a continuation of the conversation about illness versus disability I’ve had here on A Chronic Dose. To wit, I recently sat through an HR orientation and was pleasantly surprised by the time and attention the speaker gave to “invisible” conditions.

But that post didn’t work out as planned, either, though I do promise to return to it.

Instead, though it’s a day later than what I wanted and not neatly focused like I’d planned, all I can do is write about where I am right now.

Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?

I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.

I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)

But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.

And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.

I’m a writer. I’m also a consultant, an editor, a professor, and a patient. Sometimes those roles overlap, like when I was asked to teach a course using my first book as a core text. (Talk about the personal and the professional colliding. I might have more to say about that later.) Often, the roles aren’t as blatantly converged, like when I sign on new freelance editorial clients, or when I stand in front of other classrooms and hand out syllabi and the only way anyone might know about my patient experiences would be if they Googled me. (Hello, potential Googlers!)

Clearly it’s no secret, but this part of life is something I leave outside the classroom and client conversations. This division is frenetic, but necessary.

I thought about how I wanted to be identified by others (which of course is much more about how I want to see myself), and the whole notion of public versus private while I waited for my new physical therapist to arrive last night.

My normal therapist is away, and I haven’t had anyone besides him for six years. (Yes, I am spoiled.) Having a health care provider visit your house is such a different experience than going to a hospital for treatment. A complete stranger comes into your living room, performs a rather physical treatment on sensitive body parts, and is witness to all minutiae and vulnerabilities of private life: the mail on the front table, the barking dogs, what you’re making for dinner, and often, what you look like in pre-dawn hours when your glasses are still on and your pajamas don’t match and you reach for the spit cup.

“So how was your day?” she asked when we were settled into position, as if we were picking up from an earlier conversation. Because you know, that's what you do when someone you've known for about 90 seconds is thumping your chest and it's dinner time and your dogs are slamming their bones on the hardwood floor, begging for attention.

“Long but productive,” I said. And from there we talked about where she lived and how I worked near there. We talked about writing and teaching and graduate school, and we talked about rescue dogs and traffic and commuting.

And even though she was there because I have PCD and bronchiectasis and I was literally choking in phlegm before she arrived, it didn’t really come up.

It wasn’t that my illnesses were invisible (um, hello hacking cough and vigorous clapping) but they were not defining.

The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out.

One day at a time.

Beyond Memes: Public versus Private

2009-09-06T08:59:00.000-07:00

There’s an interesting meme going around Facebook and blogs right now: 30 Things About My Invisible Illness You May Not Know. With Invisible Illness Week quickly approaching, the questions posed are particularly resonant.

I’ve thought a lot about how I’d answer the questions. For some, I had immediate replies, like “Something I never thought I could do with my illness that I did was __” (live abroad for a year) and “The hardest part about mornings are __” (trying to be awake and, you know, pleasant for early morning chest PT). But several of them touched on things that my experiences don’t speak to in the same way; namely, the “before” and “after” of illness onset, or, most notably, “If I could have one day of feeling normal again I would__.”

Like many lifelong patients, this is my normal. I cannot long for what I cannot imagine. But the question of which is better, to have known healthy before getting sick or to have never known healthy—a question that comes up fairly often—actually hints at something deeper than these static boundaries. This is my normal, this is the life I created from the circumstances in which I found myself and I would not trade what I have created for a taste of a different meaning of normal.

Though I’m not going to complete the whole meme here, I think it can be incredibly useful, and not just for people adjusting to sudden or adult-onset chronic illness. As I read people’s replies about what nice/surprising things others have done for them, it hit me how much of that is my normal, too. I’ve always been sick, I’ve always been surrounded by friends and family, so I have, quite literally, grown up having people respond to me with compassion, loyalty, and empathy.

In fact, the hospital visits, cards, phone calls, Fed-Ex’ed mix CDs, etc and the intrinsic knowing that there are people who will come in the middle of the night if they are ever asked form such an enormous debt of gratitude I feel no amount of similar deeds I do for others can ever repay it.

(Of course there have been moments of the opposite, and friendships that didn’t survive this, but like the careless comments, insensitive assumptions, or completely inane expectations I’ve received, they are exceptions, not the norm. Er, normal. Not trying to pun here.)

I’m not saying I haven’t had adjustments to make, or new realities to forge. I didn’t get correctly diagnosed with some of my more serious problems until I was an adult, and my treatments changed significantly. And like most patients with chronic illness, my health status fluctuates frequently and drastically, so life is a constant cycle of readjustment.

After mulling this over for a few days, though, I think the more striking “before” and “after” I can point to is that between illness being public or private. For twenty-three years I was sick and while it seeped into everything I did and every decision I made, it wasn’t something I talked about outside of family, friends, teachers, and of course, doctors. I’ve had some sort of a byline since I was 14, but the only piece of “public” writing that concerned illness was my college essay, and that was mainly because I felt I should probably explain why I missed the better part of two years of high school. You know, minor details.

And then, as the story goes, I found myself in a nonfiction course in my MFA program with a looming deadline and I didn’t know what else to write about, so I wrote about life in the hospital and suddenly, eleven other people knew more about my thoughts and emotions during medical crises than most people in my life did.

Weird.

A few years, a few hundred blog posts, one book and another in the works, and many, many exchanges with other writers, bloggers, and patients later, here I am. And as much as I work to update and refine my reality based on the color of my lung secretions, how much air I can breathe in, or what other random infection or problem that springs up, I find the balance between private and public just as important and just as complicated.

I strive for the universals of modern chronic illness but know those depend on particulars. After all, all writing must tell a good story, and that story comes in the details. I embrace the conversations and explorations a more public illness experience allows for, and I appreciate the irony that people who read what I write are sometimes more in tune with what’s going on than people I know—it’s a macro version of that first workshop experience I had as an MFA student.

But for all the stuff that happens offline, the daily minutiae and the more serious decisions and reactions that are part of my normal that do not make their way into my posts, I am equally grateful for the private experience of illness.

And so to return to the meme, let’s look at #26: “When someone is diagnosed I’d like to tell them__.” Based on this post, I’d tell them of the value of online communities and social media, of how interesting and affirming it can be to read other people’s experiences and see traces of your own story in them. I’d tell them to connect, to leave comments on blogs, to know no one has all the answers but you should always be open to learning from others’ perspectives.

And I’d tell them that the best-case scenario is to also have someone you can call when you are crying and need someone to hear the tears, or when you have good news that the people who have traveled this long road with you offline can appreciate the most.

So Long, Summer

2009-09-01T06:47:00.000-07:00

It’s been an usually long time since I’ve written—somehow, life and all its unpredictability conspired against me in terms of writing time.

And in the past several days, while I was adjusting to major work changes and family health stuff, entertaining visiting friends and making doctor appointments (because the good always accompanies the not-so-good, which keeps us sane and moving forward, I think) summer somehow slipped away. The cold, rainy weather of this past June and July and the two-week sweltering heat of late August did not constitute a real summer to my New England psyche, so today’s brisk temperatures and distinct autumnal crispness feel a bit hollow—you can’t say goodbye to those stereotypically lazy, hazy days of summer that really never happened.

As you know, I’ve been dreading the return of fall and winter in a way I never have before. Normally the choking humidity of summer in Boston and the luster of the promise of a fresh new start is a powerful combination that leaves me pining for September by, oh, July 4th. Seriously. I used to be the kid who had all her school supplies bought (hello, Trapper-Keepers and erasable pens) and organized by mid-July.

This year, not so much, but for good reason. I didn’t have any serious infections or freak medical calamities, which was a refreshing change. I got to sit next to President Clinton and talk about health care reform, and celebrated my fourth wedding anniversary. I woke up and on most days, I was able to complete the tasks I wanted. The daily maintenance and ministrations of chronic illness were white noise, routine parts of my life that did not define my life.

I want this trend to continue, despite the shorter days, the copious amounts of germs that accompany winter, the threat of H1N1(I’m not paranoid, just acutely conscious of my risks, just like I am with regular seasonal influenza), etc.

As I think back to my last post on hope (forgive the stream of consciousness style of this post), I’m reminded that we never can tell how things will unfold, personally or professionally. All we can do is move forward, do our best to minimize the variables we can control for, and adjust when necessary.

I have a medical plan in place to try and prevent another winter like last year, and more than that, I have a lot of things to look forward to this fall: new career challenges in academia, moving forward with my book, etc. As much as I’ve been willing time to stop lately, it hit me when I dropped some of my fall clothes off at the dry cleaners last night: that queasy feeling of anticipation.

September’s here, and I have every reason to believe (or to hope) it will be the start of good things.

***
Speaking of new changes and things to look forward to, I’m pleased to announce that my friend and colleague Jenni Prokopy from ChronicBabeand I are starting a radio show this fall. The Chronic Truth will debut in a few weeks on BlogTalk Radio. It will feature a variety of topics (diagnoses and doctors, relationships, health reform, etc), and will include guest experts, listener questions, etc.

We’re both really excited to collaborate on this (we had a blast doing our podcast) and will get the rest of details out to you as soon as we can.

Hope (or something like it)

2009-08-20T12:37:00.000-07:00

“Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.”
--Emily Dickinson

Fourteen years after I learned this poem for my freshman English class, I still remember every line. No, this is not because I am a fervent Emily Dickinson fan but because the paper I wrote about this poem turned out to be the first of several papers my teacher proceeded to read to her sophomore class, according to the sophomores cornered me at lunch to tell me. They were not at all impressed.

To get an idea of how awesome it felt to be the English nerd, here’s some more context for how cool I felt: the fall of my freshman year in high school, I was in a new school where a.) everyone knew each other already and b.) no one had ever heard of my hometown and didn’t seem all that interested in finding out more about it--or me. While everyone bonded on fall sports teams, I hobbled around on crutches, my reconstructed ankle still months away from healing. I prayed my ears wouldn’t visibly spew infected crap during school hours, and tried to hide how wheezy I got traipsing through the sweltering hallways one crutch step at a time.

Oh, and obviously I had glasses and braces, but come on, you knew that was coming.

As an adult, I can somewhat appreciate my teacher’s misguided enthusiasm for my ability to write a cohesive essay, but I wish she’d, you know, just written me a margin note or something instead of using my work to coerce her other classes into writing. She did my one-girl crusade for normalcy (invisibility?) no favors.

But enough digression. I’ve been thinking a lot about the word (or really the concept of) hope lately.

Some more context: I am a person of extremes. Now, I’ve evolved a little from my crazy full-course-load-and editing the school newspaper-and interning-and volunteering or spending-weeks-in-the-hospital dual existence in college. I’ve gotten sicker, I’ve matured, I’ve changed my treatment regimen, I’ve re-prioritized things and I’ve learned that occasionally, limits and common sense are good things. There is a middle ground between 18-hour days and the ICU.

But in many ways, I am still all-or-nothing. It is a strength and a weakness. Those who know me in real life know this. I know I certainly experience my emotions like this. When I get good news or learn about possibilities, I get so excited. The tenor in my voice changes, I have more energy, I am consumed. When there is reason to be joyful, I am not someone who can hide it, not in my words, my diction, my gestures, my expressions.

And this is a good thing—I don’t want to become someone who cannot or does not experience things so fully. But it is not without complications: my expectations for things are high, and my disappointment is correspondingly low. I can be hot-headed, and easily frustrated when things don't work out. I can push things past the limit, and I can get too focused on doing to remember that goals are great but this does not mean they are not subject to revision. And sometimes should be subject to revision.

As I sit here preparing for another fall semester, I can’t help but think of that poem for more than its cringe-worthy memories. Though it has only been hot and summery for a few days in Boston, the shadow of autumn still manages to cut through the hazy humidity of summer. Leaves are scattered across the lawn already, and syllabi and new schedules must be set.

And for as much I love the fresh slate that is September, I am not ready. I’ve only just gained some semblance of stable health and in such a visceral way, I dread giving pieces of it back to every infection I know will come. My jaw clenches thinking about it. I do not want evenings to start at 4pm, I do not want to cough up blood, or lose holidays and weekends.

I would love September, if only October-April did not follow it.

I’ve put in long (long) hours on the book I am writing, and have realized the process is much slower than I had anticipated this time around. Reluctantly, I take research detours and “let things marinate” because it is what the book demands, but it goes against my nature to do this, especially with my daily word count stipulations hanging over me.

I’m expanding my editorial business and love connecting with clients and taking on new projects, and my excitement for it consumes me.

I am not patient. If I were, I would not exist so often in extremes. I have high expectations for my writing projects, for my career, for my health to remain stable, and for our future family (and that is certainly not an easy or quick process, either.)

I do not want to stand still when it is my nature to equate motion with progress. I do not want setbacks or delays; nor do I want winter, or to miss daily word counts, or to have taken such a circuitous route thus far towards being a parent.

And yet I yield.

All I can do is have hope: hope that things come to fruition as they are meant to; hope that I will have the wisdom to know when to pull back or push forward; hope that decisions we make now are right later, and hope that I don't ever move too far from extremes. I don't ever want to forget that fluttery, excited, jittery, all-consuming feeling. It took me fourteen years to name it as hope.

Comparing Facts in Health Reform

2009-08-14T08:18:00.000-07:00

From the television ads and late night comedy sketches to the daily headlines about “death panels”and colorful town hall meetings, it’s obvious the dialogue surrounding health care reform is as contentious as ever.

But what about the substance of the actual proposals, which seems somewhat lost in all of the rhetoric? Chronic illness is a huge factor in reform, which is why I listened in with interest to a press call announcing Partnership to Fight Chronic Disease’s release of “Hitting the ‘Bulls-eye’ in Health Reform: Controlling Chronic Disease to Reduce Cost and Improve Quality.” The document is a side-by-side comparison of the bills and offers five recommendations for how Congress could control costs through chronic disease prevention.

You can access the publication by clicking here.

As the PFCD’s Dr. Kenneth Thorpe pointed out during the press call, looking at the big picture there are two major sets of issues involved in the health care debate: slowing down health care spending and improving quality, and providing insurance coverage to the millions of uninsured Americans. While the latter is hugely important, with the release of this document the PFCD is focusing on the first set of issues, which affect the chronic disease population in significant ways.

Thorpe characterized the current proposals a “good start” but said the idea would be that Congress would come back in the fall and build on this foundation and offer more aggressive solutions. As such, the report identifies five areas to target, many of which are familiar to us by now: prevention, better coordination of care, reduction of administrative costs, etc.

One thing I was really pleased to hear relates to disease prevention. Of course, we all know the best way to reduce disease expenditures is to prevent conditions from developing in the first place, and there are many specific ideas relating to that. As I’ve written before, when it comes to health care and existing chronic illness, prevention is often more a question of preventing progression than anything else. As such, I paid particular attention when Dr. Thorpe said we need to make sure we’re allowing patients to manage their own conditions and we need to remove barriers that stop them from doing that. His examples included getting hypertension re-checked or following up with blood sugar testing with doctors to prevent long-terms complications like amputations, but my mind went immediately to the types of long-term therapies (like chest PT) that keep patients like me out of the hospital.

The side-by-side comparison of proposals is really quite helpful, so make sure you click on over and go through the information yourself.

Synergy (in an unexpected way)

2009-08-13T10:37:00.000-07:00

It’s been somewhat of a synergistic week.

Someone I love is in the middle of some serious health issues. I’m not going into detail because it’s really not my story to tell but more than that, the physical details don’t matter. What does matter is that this person faces a very long and difficult road, and is frustrated and in a lot of pain.

And I am on the outside. I am able to listen and make phone calls or do errands, but completely unable to do what any of us who care really want to do: make it better.

While I can understand the frustration and isolation of illness better than others might, even this familiarity is not enough to bridge the gap. Being able to understand the emotional aspects of this situation does not make me feel any less useless, or helpless.

And with that, I stopped and realized what it must sometimes feel like for the people who love us—so much of all of this is out of their control, too. We often write and think about control in terms of our own bodies—what medications we take, what preventive steps we adopt, what can go wrong not matter how carefully we plan otherwise.

But those who love us have their own frustrations (and I know this is but one of many). They can do so many amazing things for us day in and day out and most of the time, that’s enough. Most of the time, we’re all probably too busy living to stop and think about it much. But every now and then, it must really stink to stand by and watch someone you love go through a bad spell and not be able to do the one thing you want to, which is to fix it.

A couple of years ago I wrote this piece on marriage and chronic illness. I re-read it today, with an even deeper respect for what it takes to make a relationship so much more than the sum of its challenges, and an even deeper appreciation for my husband, who for four yeas (as of today) has shown me what it means to put someone else’s interests above your own without hesitation.

I know I am one of the lucky ones.

Illness vs Disability

2009-08-10T04:28:00.000-07:00

So, this post was percolating well before I was on vacation, but I’m glad I held off on committing it to the screen until now. My vacation was actually a pretty good complement to a line of thought that first began when I met up with Joe Wright of the wonderful blog, Hemodynamics—his posts are always so intelligent and insightful, and I knew speaking with him in person would not disappoint.

As with all good conversations, ours moved from an original specific topic and wandered towards something bigger and completely unscripted: chronic illness and disability, and the disability movement.

Now, if you’ve read this post on illness versus disease or the follow-up on language and the patient experience, you know how interested I am in the semantics of illness. Accordingly, I find the intersection of illness and disability pretty interesting, too.

For a start, people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness.

And if you’re wondering what vacation has to do with this, I’m getting there. While this summer’s vacation was more of a “working vacation” than years past, it was also one of the best ones. Unlike previous August trips, I didn’t have heart monitors or blood pressure cuffs with me. I had adrenaline, and therefore didn’t have to deal with the side effects of solumedrol infusions, and since I didn’t have an active respiratory infection I wasn’t chained to my nebulizer.

Instead, I took walks and brought my dogs swimming and had dinner on the beach and generally had a blast (work aside). My legs worked, my wheezes were dull, and my energy was good.

And in comparing the relative normalcy of our vacation to the chaos I am used to, I couldn’t help thinking about the ebb and flow of chronic illness, how sometimes the body can be cooperative and yielding while others times the symptoms take over so many aspects of daily life.

So for people whose chronic illnesses cause disabling symptoms, how does that boundary crossing work? Going back to the decisions we make when choosing terms to describe illness, when are you more likely to use the term “disability” versus “chronic illness?” Is it a semantic distinction of little significance to you, or is the former more difficult to adjust to or use? (And if so, why?)

I wonder if the choice to use “disability” is more tied up with receiving needed accommodations or services—a more public term—while chronic illness is a more private understanding of the ebb and flow of invisible illness outsiders might not get.

The other connection I’m just starting to tease out (expect more later) is that between the disability movement and patient advocacy in regard to chronic illness. Believe me, I am by no means an expert on the history of the twentieth-century disability movement (I am wading through a lot of articles, though, and am happy for any suggested resources). But from a macro perspective, and doing some major summary here, a lot of disparate patient populations eventually came together under shared goals: respect, employment, accessibility, etc.

Despite the fact that many patients with chronic illness also fit under the umbrella of disability, I do believe distinct differences remain. Reading other blogs and discussion forums, I am often amazed at the sheer variety of chronic conditions out there, by the way some non life-threatening conditions can be really incapacitating, some life-threatening conditions can have the appearance of relative functionality, and how quickly things can change for people. As patients, those with chronic illness have so many different needs and challenges.

So what are the shared goals of the chronically ill, and the catalyst that unites different disease groups and patient populations? Is it health care reform?

I’ve still got a lot of thinking and reading to do. Your thoughts?

Are We Being Too Tolerant of Gluten-Intolerance?

2009-07-31T07:37:00.000-07:00

“Are we being too tolerant of gluten-tolerance?” is the question Slate’s Daniel Engbert explored earlier this week.

Now, I have a lot of thoughts about the points raised. However, I also have a lot of thoughts about another post I’m writing on disability vs illness, the interviews I’m doing today, and all the stuff I’m supposed to pack for a “working vacation” that starts tomorrow, so I’m going to tackle some of the major ideas briefly.

Honestly, based solely on the headline I thought the piece was going to antagonize me (proof it’s a smart headline, no?) but I found myself agreeing with some of it. Of course, where I found myself nodding in agreement were the most obvious distinctions, but they’re important ones nonetheless. Using Elisabeth Hasselbeck’s best-selling book The G-Free Diet and the booming gluten-free food industry as context, Engbert establishes that:

“The lavishing of attention on wheat alternatives is wonderful news to the sufferers of celiac disease, for whom any amount of dietary gluten can inflame and destroy the lining of the small intestine." Naturally I agree with this; in the five years since I was diagnosed, both awareness and availability of GF products has really increased. More restaurants have GF options, labels are more clear, and more GF alternatives line the grocery store shelves.

(As an aside, does anyone with celiac disease actually use the term “G-free” in public? No seriously, I’m asking.)

Yet I don’t think I’m the only one out there who has witnessed the downside of the popularity of eating GF. For example, because it is known that people without celiac are opting for the GF lifestyle anyway, there can be less urgency about making sure meals in restaurants are actually GF—the occasional eye roll or dismissive glance that means the person I’m talking to half-wonders if I’m avoiding gluten simply to lose weight or something.

I should add here that Engbert makes the distinction between celiac disease and gluten-intolerance pretty explicit; it’s the people who reside on the spectrum of intolerance who don’t have the full-blown autoimmune response to gluten but feel better when they remove it he’s worried about:

“I'm all for people eating what they want, but lately I've started to wonder how gluten intolerance might relate to a more general anxiety about food… Any kind of restrictive diet can help alleviate gastrointestinal distress. If you're paying more attention to what you eat, there's a good chance your symptoms will lessen.”

He goes on to say, “It's well-known that our digestive system adapts its secretions (rather quickly) to whatever we're eating.” By extension, then, removing all products with gluten and then consuming some after a prolonged period could make you feel sick, thus enforcing the idea that you are gluten-intolerant.

(I can vouch for the fact that my husband went GF for a month to see what it was like and when he gorged on starches his first meal “back” he felt awful. Was gluten a shock to his system, or just a sign he overate in a way he didn’t when he was eating GF foods? I’m not convinced either way, but I know he felt pretty miserable.)

I know a type 2 diabetic without celiac who removed gluten from his diet and experienced dramatic reductions in his insulin needs—was it because he was somewhere on the sensitivity spectrum and removing gluten improved his digestion and absorption of foods and that somehow influenced his metabolism of insulin? I’m not an endocrinologist, so I can’t say. But could it be something as simple as removing gluten meant removing the more processed white starches and carbohydrates that spiked his sugar?

I don’t have the luxury to “slip up,” nor am I qualified to dissect those who are gluten-intolerant—we face many of the same challenges and gains in eating GF.

I guess my point is, to me, it doesn’t matter—in my example of the diabetic, the end result was that he felt better and needed less insulin. That’s the important part. If the gluten-intolerant have their own health improvements, that's a good thing.

I live GF and have no regrets—I eat whole, fresh vegetables, complex grains with plenty of fiber like quinoa, and consume no processed foods. It is not without sacrifice or expense, but in many ways, I see it as a much healthier way to prepare and consume food. If others choose to do the same and experience the same benefits, that’s great.

And here’s where Engbert’s argument gets a bit more interesting. He parallels the rise of eating GF with other diet trends, like Atkins, at the same time admitting he doesn’t think people who choose to go GF are simply secretly trying to lose weight:

“When a restrictive diet becomes an end in itself, we call it an eating disorder; when it's motivated by health concerns, we call it a lifestyle. It might also explain the relationship between food sensitivities and fad diets: People who are intolerant of gluten or lactose get a free pass for self-denial.”

Not to use the word “sensitive” too much, but I am particularly sensitive to this association between elimination and health. After all, I chose to go dairy-free even though I’m not lactose-intolerant because it helped decrease mucus production. That got a few eyebrows. And when I eliminated sugar and yeast for nine weeks due to my intense antibiotic regimen that wreaked havoc in my GI system, I got more eyebrows.

I consider these moves wholly health-motivated, so my choices would be classified as “lifestyle” ones by Engbert’s definition. But from the outside, perhaps they appeared otherwise to other people?

At the end of the day, I can’t worry about or judge the dietary choices others make or what they think of mine, so I’ll leave this where Engbert does—all this awareness is truly a good thing for celiacs, as well as the people who have celiac but have not been diagnosed yet but have a better chance of it now.

Do I think we're "too tolerant?" No. Do I think extremes exist in every situation? Sure. Is that a reason to decry real progress for so many people? No.

On Listening and Judging

2009-07-24T13:15:00.000-07:00

I’ve been thinking about the online patient community a lot lately. When I first started blogging a few years ago, I was in such a different place. Not only was I completely new to the concept of the medical blogoshpere (I was just a girl sitting in office hours who decided to start a blog), but I was quite new to many of my diagnoses, namely primary ciliary dyskinesia, bronchiectasis, and celiac. I was also in the middle of acute adrenal failure.

As I wrote in Life Disrupted, it wasn’t that getting labels suddenly meant I was “sick.” Certainly the twenty-three years, numerous surgeries, and months in the hospital that made up my medical history did that. Rather, the correct labels now meant the descriptions of my illnesses finally matched my experiences.

I had a lot to learn about my conditions, my treatment plans, and most of all, how I wanted to mesh what I needed to do for optimal health with my professional and personal goals. I learned a lot from my new doctors, from my own research, and from other patient bloggers. Each source provided a different type of information, from clinical summaries of prognoses and data points to personal, anecdotal wisdom from those living with the treatments and side effects every day.

I often write how much I believe the universal experiences of illness far outweigh the disease-specific symptoms: getting a diagnosis, finding a compatible doctor, struggling with employment or personal relationships, navigating the process of acceptance, etc. Based on the variety of different patient and disease blogs I keep up with, I am further convinced of this.

But there’s something else I’ve gained from reading and processing other peoples’ disparate stories: I think I am less judgmental than I used to be.

It’s easy to think your reaction to a diagnosis, your treatment plan, or you feelings about particular procedures or practices are the “right” ones if they are all you know or think about. Sometimes the differences are smaller, like maintaining a gluten-free lifestyle by choosing only naturally gluten-free foods versus learning how to bake gluten-free equivalents of “regular” food, inhaling a certain kind of saline in a nebulizer over another, or choosing one type of specialist to handle a condition versus another.

Sometimes they are more profoundly life-changing, like deciding to try an experimental procedure, putting a name on a transplant, or deciding which way a family is going to bring a child into the fold.

Regardless of the enormity of the decision, having access to so many interpretations and points of view has reinforced to me how important is to see things from many angles, to respect that what works for me might not work for someone else and vice versa, and to understand that we don’t always have to agree with other people say, do, or write, but that’s okay—it’s not always our call to make.

When you write things and post them publicly, you sign up for discussion and sometimes disagreement—that’s what makes blogging so dynamic, and what makes it a conversation, not a monologue.

But sometimes, in the offline world of the healthy that each of us spends so much time in, I want something different. I don’t always want a conversation, or debate, or input that becomes static in my brain. When I’ve done the research and had the talks and made a decision about my life or my health, I don’t want to have to explain or justify or defend.

Sometimes, I just want the act of listening to happen. And hopefully with listening will come understanding, but I’ll take just the listening for a start.

Does that make me a hypocrite? It might, and I accept that.

Every now and then, I wish there was a way to easily moderate the comments that happen in real-time…what I really want to say is trust me.

Making Gluten-Free Eating Easier

2009-07-22T07:45:00.000-07:00

My recent foray into eliminating sugar and yeast from my diet have me thinking a lot about what I choose to put into my mouth. As an almost six-year veteran of living gluten-free, I’m used to doing that, of course, and I’ve written before about how I view my celiac diagnosis as full of opportunities, not restrictions.

While there are always occasional missteps or awkward experiences, after all this time I don’t stress too much about what is safe and what isn’t. I have my regular favorites recipes and my grocery store routine down pat. I’m comfortable asking questions in restaurants, and know to look for the “secret” sources of gluten that can make me sick. At this point, I think one of the more challenging parts of celiac disease is making other people comfortable and familiar with what I can and can’t eat. I don’t want relatives needlessly worried about giving me roast potatoes or rice (for some reason, the fact that they are starches used to make them think they weren’t safe), and I don’t want to cause extra work or concern for them.

I’m fortunate to be able to say that my friends and family are wonderful—they want to include me, and often branch out into things they might not have cooked before because I’m around, like risotto or polenta. They do their best with what I know is a steep learning curve.

That learning curve—the same one newly diagnosed celiacs also face—just got a little easier. I recently had the change to speak with the lovely people at Zeer, which is a “food information resource that makes it easy to find safe food. It helps people save time, stay safe, learn particular diets and live better lives.”

In response to the active, passionate gluten-free community on their review site, Zeer created Zeer Select, a subscription services for gluten-free shoppers that launched just a few weeks ago. The services includes a database of 30,000 food grocery products (a number that will keep growing), each labeled with a gluten-free safety status. (Not to worry—each product is evaluated by a team of physician and dietician experts to verify the safety and accuracy of the labels.)

Products are coded as either being gluten-free (safe), appearing to be gluten-free, or containing gluten. The ingredients for each product are included, so if a product is not specifically labeled gluten-free by the manufacturer but none of the ingredients are known to have gluten, the consumer can read them and make the decision to purchase it or not. Of course, for products that are not safe, the actual source of the gluten is noted. Users can search by food type, brand, or UPC code, and features like a list of suggested alternatives for “unsafe” foods are really helpful.

First of all, I always like to hear when a company pays attention to its customers and responds to their needs. Zeer did not start out customizing in gluten-free services but saw how engaged its gluten-free members were and things emerged organically from there. Secondly, Zeer Select fills a void in the online gluten-free world. Often, when you Google gluten-free foods, lots of recipes, blogs, and commentary pops up—which is great, but if you’re looking for grocery items, it is much more difficult to isolate the answers to your questions.

I spent some time on Zeer Select, searching for specific brands and specific items, like salad dressings, and found it really easy to navigate. If you’re interested, click on over and you can take a tour, too. The service is $14.95 a month, and they plan to build out the intelligence to include other specialized plans, like dairy-free, casein-free, and vegan diets.

If you’re newly diagnosed and not sure what you can and can’t put into your grocery cart, you will learn a lot from this service. But as I think about the ups and downs of the past six years, I realize it’s not just the newbies who benefit—the people around us who want to learn and cook for us and with us do, too.

(Food Allergy Buzz wrote about the launch, too—check it out to hear what others are saying.)

While we’re talking about celiac disease, Scientific American just published an in-depth article about celiac disease and autoimmunity—definitely worth the read!

Don't Know What You've Got Till It's Gone

2009-07-14T14:54:00.000-07:00

I didn’t realize just how little energy I had as a result of my malfunctioning thyroid until I started taking thyroid medication—it was the kinetic equivalent of putting on a pair of eyeglasses for the first time. Everything was sharper, clearer, more focused.

It was a whole new world. Can you relate?

I didn’t realize just how awful (sluggish, congested, weak) I felt when I ate foods containing gluten until I stopped eating them, and immediately ditched the sinus headaches and malaise. Similarly, I didn’t see just how foggy and gross I felt eating foods with sugar (wine, fruit, vinegar, etc in my world) while on suppressive antibiotics until I eliminated all sugars from my diet and no longer got spacey or clammy or had palpitations.

Five years apart, these experiences opened up “whole new worlds” on their own—not without sacrifice, but totally worth it. Have you been there, too?

And of course, I couldn’t tell just how much the muck festering in my lungs clouded over everything and constantly made me feel awful until I started treatments that actually addressed it—postural drainage, chest physiotherapy, etc—instead of just throwing steroids at it and hoping the infections would subside.

It was a whole new world, one that didn’t automatically include multiple weeks in the hospital every year. Have you experienced that type of profound relief?

Sometimes you just don’t realize how bad things were until you do something to correct it, until things are different. When it comes to medical stuff, this isn’t always a bad thing. After all, if we can look back and compare a “before” and “after” favorably, then we’re doing something right; we’re treating the right thing or implementing the right therapy or making the right lifestyle choices.

And right now, I’m experiencing a related type of gratitude. It has been two months and change since I was acutely ill. That’s right, 10 weeks of relative normalcy, a huge step given that for the past year or two my stretch for bad infections had been about two weeks at the most. The few infections I’ve had have been much more minor than normal, so beyond the daily coughing/wheezing and maintenance, my various conditions have been really stable. Part of it is because my “bad” season is over (September-May), part of it is because I am out in public less during the summer (no commuting to germy college campuses), and I know a huge part of it is because of the very aggressive treatment I’ve almost completed.

Whatever the constellation of factors is, I’ll take it.

I forgot what it was like to be able to accomplish a lot of the things I want to do every day, or to make plans without hesitation or fear I’d just have to cancel, or to go to gym and know my lungs and body will hold up their end of the bargain. I forgot just how great and necessary it is to see friends in person, and be part of family functions, or leave the house and do fun things with my husband on the weekends.

Only now that the vortex of that long, awful winter has finally released me can I say that I didn’t realize what an effort simply getting through the routine of daily life was until it was no longer an effort.

And I love this feeling. It’s a whole new world.

Can you relate?

An Issue of Scope

2009-07-09T13:59:00.000-07:00

It’s been a more eventful few weeks than normal, what with last-minute
trips to New York, visiting old haunts in Dublin, dealing with epic technology fails, and the assorted messiness and unpredictability of daily life.

Still, no matter how wonderful or frustrating these distractions are, they haven’t supplanted the main thing looming in my mind right now:

I’m having a bit of scope issue these days (and yes, here’s where the “writing” part of the writing blog comes in). For a huge project I’m working on, I’m asking a lot of questions I don’t know the answers to yet, questions I am not even sure have resolute answers…which is of course a great thing. After all, questions with known answers aren’t exactly intellectually stimulating.

However, the flipside to being really interested in something and asking lots of questions means that as soon as you locate research and information and begin to understand something, you realize how much more you need to know. And then when you find that next piece of the story, yet more doors open. It’s an exhilarating, exhausting cycle. I’ve gathered thousands of pages of journal articles, newspaper/magazine articles, essays, and statistics. I’ve read and annotated dozens of books, and am in the middle of several rounds of interviews with people all of all persuasions—patients, doctors, researchers, activists, policymakers, etc.

I can sit at my desk and quite literally be surrounded by mounds of resources, fully organized and categorized, and still not know exactly what I am doing. I know this is part of the process, I know this is how it should be, but sometimes I am overwhelmed by the sheer amount of information I have. Some of the research articles or carefully annotated passages from books I know I won’t end up using, some of it I know is still out there and is information I will need, I just don’t know it yet. How much context do I need, how much background is appropriate, how can I possibly touch on the surface of topics that are so big each could warrant a book on its own?

To talk myself of the ledge of information overload, I’ve had to remind myself that all of it matters, that it’s all shaping something bigger and eventually it will become clear to me how the pieces fit. None of the knowledge will be in vain. Seriously, I’ve actually said this to myself in my head. (What can I say? Writing can be an isolating existence at times. I’m lucky I don’t say it to dogs.)

It reminds me a little of one of my early experiences freelancing. I pitched Idea A to a newspaper editor, who teased out a smaller thread from my original idea and assigned me Idea B as the story. I jumped in, reading multiple books, wading through research, interviewing national experts, revising draft after draft. I became truly engrossed in the topic, and rattled off statistics and factoids without ceasing to anyone unfortunate enough to ask me about it. I’m fairly certain my neck flushed and I talked with my hands, which happens when I’m either nervous or really animated.

Then the editor decided it wasn’t the right fit for her page after all. Of course I was upset; no byline, no paycheck, no recompense for hours and hours of work. But I don’t regret the experience at all. I now know so much about direct-to-consumer advertising of pharmaceuticals, and I still have strong feelings about it. The foundation I got from that story comes in handy when I’m interviewing people for other stories, when I’m doing research for my book, when I’m reading and responding to other blogs and essays, when I’m thinking about health reform, when I’m watching television or flipping through a magazine and am inundated with bouncing balls, buzzing bees, or luminous butterflies.

And when I have classes full of pharmacy students? I don’t regret for a second all the knowledge I gained because it allows me to engage in a more meaningful dialogue with them.

So yes, I sometimes need to remind myself that all of this data that is flying around will settle, and that none of it will be in vain. In a way, it’s also similar to all the researching and trial and error we do when we’re narrowing down diagnoses or testing different treatments. Not everything is going to yield the exact answer you’re looking for in that moment, but eventually you find it will answer other important questions, too.

While I prefer concrete answers when it comes to diagnoses and treatments, despite its stresses I see the value in unraveling questions. When it comes to writing, I wouldn't want it a different way.

When the Familiar Becomes Something New

2009-07-02T11:29:00.000-07:00

We had a really interesting conversation in my writing group the other night. In sum, we discussed how when we’re younger (teenagers and young adults) we are often so willing to embrace—and actively seek out—new experiences. The older we get, it gets harder to break out of familiar roles and stereotypes; we cling to the routines and the responsibilities that define the lives we’ve been working toward.

But sometimes, isn’t it so great to experience something new, that adrenaline rush that signals we are leaving our comfort zone?

I’ve thought a lot about my friends’ comments the past few days. The night before we met up, I returned from a short trip to Dublin, Ireland, where I'd spent a year studying when I was in college. I was jetlagged but exhilarated.

Clearly going to Ireland wasn’t a “new” experience for me—I loved the city so much when I lived there, and despite changes in Ireland, many of its streets and pubs and quirks were as familiar to me almost a decade later as they were when they were my streets, my pubs, and my adopted quirks.

But in many ways, it was new.

You see, a lot has changed since I was a college junior. That was before I had my diagnoses of PCD, bronchiectasis, and celiac, before the failure of my adrenal system, before I really acknowledged the consequences of choices I made, before it got to be that literally every time I’m in a public place or a train, etc I get sick.

That year was sandwiched in between years of hospitalizations and trips to the trauma room or ICU, certainly, and I was definitely sick while I was there. (Backstory: after I was accepted to Trinity College Dublin, they required several doctors’ notes to prove I was medically stable enough to even attend.) I had a private lung specialist a few blocks from my apartment there, and I had my requisite infections. My backpack for a several-weeks’ sojourn across Europe was mainly filled with medications, and I got lots of questions at border crossings.

And being me, of course I broke my ankle and tore ligaments before my trek. I lost my cast and crutches the day before I left for Spain, and hobbled through Europe with a splint-type contraption that smelled terrible and made navigating hostel showers quite a production. (I had patient friends.)

Still, I went. Not just to Dublin, inhalers and pneumonia and all, but to many places in Ireland and Europe. I saw amazing things and became close to amazing people, many of whom I am lucky to have in my life all these years later. I thought I appreciated the experience fully while living it, and I think I really did know how lucky we all were.

Looking back through several years’ experience, though, I appreciate that year abroad so much more now. Of course there is the obvious reason—how often can you pick up and live in a different country, or pack a bag and see so many sights in so many different countries? It is the quintessential young adult experience.

But the patient in me appreciates it for deeper reasons. In the intervening years, I’ve said “no” to a long list of things: family dinners, birthdays, and holidays; weddings, showers, and baptisms; dinner plans, outings, and get-togethers with friends…and of course, travel. It seems almost every time I made plans or booked a flight I had to cancel because I was sick.

And so in the same ways we can get pigeon-holed by labels—“lawyer” or “student” or “parent” or “teacher” or any of the many, many roles we have—I too have felt pigeon-holed by “patient.” It was by necessity and not choice, but it still seemed to define so many of the choices and experiences I’ve had. My acute crises and in-patient admissions have calmed down, but often over the past several years it seemed I could hardly recognize the person who, despite some complications, could travel that much, could spend hours each day walking through the streets of Dublin.

(And certainly this past winterdidn’t help.)

Or, despite how naïve it may have been, I still trusted my body then, still depended on it not to let me down. For better or worse, I’m not as quick to say I do that these days.

And that’s where we get back to my recent trip. Yes, much of the trip was reminiscing and visiting old haunts (but so much better this time around because I was with my husband, and he could show me his old Dublin haunts, too) and most of what we did I’d done before. But it was new role for me, one I hadn’t been able to embrace in such a long time…and that’s why I appreciate that year so much now: being back in Dublin reminded me there is always the possibility of something new.

(Even if only for a few days.)

Musings at the One-Year Mark

2009-06-24T07:57:00.000-07:00

A year ago today, I wrote this post to mark the official publication date of my first book, Life Disrupted. I talked about blogging, writing, and storytelling, and the power of narrative and the responsibility that comes with writing other people’s stories.

In the year since the book published, I’ve learned a lot, from how to pace book readings and radio interviews to how to switch gears from asking the questions and writing the material to being on the other side of the story. I’ve had the chance to connect with readers in person and online, and I’ve been fortunate to hear their stories. On the one hand, I’ve been particularly surprised by how many people with rare diseases I’ve heard from, yet perhaps I shouldn’t be surprised by that. I’ve said it before, but I really do believe the universals of living with illness outweigh disease-specific symptoms: denial, acceptance, disclosure, survival, guilt, vulnerability, etc.

(Interestingly enough, one specific thing in the book that resonated with a lot of readers was the infamous “honey mustard incident”—I guess reaching our own personal breaking points, even if the trigger itself is inconsequential, also defies diagnosis or length of illness.)

This notion of community or belonging is something that’s been on my mind a lot lately, both in terms of what I do here on this blog and in a much broader sense of the chronic illness population. I don’t consider this a celiac blog or a rare disease blog or a PCD blog but I write about issues related to living with those conditions when appropriate. It’s not a chronic pain blog per se, or an autoimmune disease blog, or an infertility blog, but again, when those topics are relevant to my life or readers’ lives, I write. I like writing about policy—and right now, there’s plenty of grist for that—but again, that’s part of the chronic illness experience.

Kairol Rosenthal recently wrote a great piece on the young adult cancer community, where she wondered if staying too close in the “safe” world of like patients meant missing out on the shared (relevant) experiences of others. She found she could learn from patients with totally different diagnoses who also had the same worries and fears.

Coupled with this post, a concept we discussed at the President Clinton event has been rattling around in my head for the past week or so. The conversation was about race, religion, respect and how (if) attitudes have evolved over the past few years, but Clinton’s thoughts on identity are very applicable to illness as well. He said (summarizing here) that often humans tend to identify ourselves by negative reference to others—so instead of saying “I am X” we are likely to say, “I am not X.”

Taking that and applying it to chronic illness gets interesting. There are divisions we could use to define ourselves everywhere: those who are lifelong patients versus those who get diagnosed as adults; those whose conditions are life-altering and those whose conditions are life-threatening; those with familiar, common diseases and those with rare diseases; those who live with chronic pain versus those who don’t; those who have a solid support system or access to appropriate health care versus those who might not…the list could go on.

We’ve all experienced negative referencing, whether it’s the waiting room where people are “competing” over who is the sickest, whether it’s in the doctor’s office when we’re filling out forms and checking off boxes that label our conditions, whether it is an offhand comment made by someone that hurts us. I started to do it myself above when I talked about all the labels that do not fit this blog. Really, chronic illness is a huge umbrella term and we all fit under it in some way or another.

Yes, of course there are very real differences—the newly diagnosed patient will face the shock of the “before” and “after” in a way others won’t; the person with a rare condition might face more roadblocks and challenges in diagnosis than the person whose condition can be diagnosed with a simple blood test. That is natural and inevitable. Over the past year, I’ve been lucky to hear from so many people who identify by inclusion, who seek out the shared experiences and emotions. As a society, hopefully we can continue to evolve in this regard. As patients, hopefully we can do that, too.

Thank you for sharing your stories. Thank you for giving me something to write about.

And of course, thank you for reading.

Health Reform Updates

2009-06-23T14:53:00.000-07:00

It’s another big couple of weeks in the push for health reform. During his press conference today, President Obama said that health care reform is not a luxury but a necessity. He clarified again that those with private insurance who are happy with it can keep it, but also made it clear as forcefully as I’ve heard him that unless major reform happens, they won’t be able to afford those plans in years to come.

As the lead up to Wednesday night’s “Questions for the President: Prescription for America” special on ABC continues, I saw Obama’s emphasis on containing cost in today’s press conference telling. After all, last week was a tough one for the push for reform, with many fearing the $1 to $1.6 trillion price tag associated with proposed bills would spell the end.

In the middle of the speculation about health reform’s demise and sticker shock came the announcement that Senator Max Baucus (chairman of the Senate Finance Committee) and the country’s pharmaceutical companies reached an agreement to help close the coverage gap under Medicare’s Part D prescription drug program, which enrolls some 27 million elderly patients. Prior to this agreement, Medicare recipients paid the full price of brand-name drugs once they reached $2,200 in medication expenses and until they hit an upper limit of $5,100—an expensive and problematic “doughnut hole.” In a press release from the White House, President Obama said “The existence of this gap in coverage has been a continuing injustice that has placed a great burden on many seniors. This deal will provide significant relief from that burden for millions of American seniors.”

You can watch President Obama discussing the prescription drug agreement here:

The agreement will result in an estimated $80 billion in savings over the next several years. According to PhRMA, “Under this proposed new legislative program – which represents the first important step in health care reform – America’s pharmaceutical research and biotechnology companies have agreed to help close the gap in coverage. Specifically, companies will provide a 50 percent discount to most beneficiaries on brand-name medicines covered by a patient’s Part D plan when purchased in the coverage gap.”

The savings are undoubtedly significant for the seniors struggling to pay for bills. They are small relative to the overall price tag of health reform, but a confident, emphatic stance from the Obama administration in the midst of all of this speculation is a good sign right now for anyone invested (and really at this point who isn’t, despite which side you might stand on?) in health reform.

I won’t see tomorrow night’s program—I’ll be in a plane, trying really hard not to catch anything since I do that like it’s my job—but I look forward to reading about it. As recent events illustrate, it should be an…interesting evening.