Sunday, September 30, 2007

Radio Update

If you want to listen to it, you can find the audio file for the Get Real Girls Interview on the sidebar at the right, conveniently located in the newly streamlined "Select Publications and Publicity" section. I tested the file on a Mac and a PC and it worked fine on both, but let me know if you have trouble with it. A Barenaked Ladies song fills the first few seconds and is the lead-in to my segment.

You can also find the brief feature on me and link to the entire show at

Saturday, September 29, 2007

Specialists, Specialists Everywhere, But for the Little Things, Not a Doc to Spare

The last time I had any sort of primary care doctor was when I was in first grade, up until the pediatrician who referred me as a baby to the ENT and immunology doctors handed me off to them altogether. It appeared I wasn’t exactly an ideal candidate for generalized care. Considering the strep that sent most little kids to the doctor’s office for a quick swab test and some meds ended up spewing from my ears and lodged in my knees, I can’t really argue with his logic.

For most of my childhood and young adulthood, I rotated among specialists for a confounding array of ailments: an asthma/allergy doctor for my lungs (and we all know how well that went); an immunologist for my IGg deficiency disease, an ENT doc for the ever-present (and sometimes life-threatening) infections and surgeries, a rheumatologist for the joint inflammation that began in my lower back at age 10. There was also the orthopedic surgeon who fixed my ankles and diagnosed my knee problems, the specialist who dealt with my enlarged liver and spleen, the urologist, the endocrinologist, and many others.

No wonder my genial suburban pediatrician looked at me and secretly wanted to run in the opposite direction. (And can you just picture what it was like when I was asked to supply copies of my entire medical record? I think upwards of six hospitals had a piece of me.)

It was (and is) a precarious position to be in, and I cannot help but think of the overused analogy of the quarterback: I had lots and lots of team players responsible for different things, but I had no one coordinating all the moving parts.

I still don’t. I have my lung doctor, who is amazing. I actually have to suppress the urge to tell him he’s a rock star when we communicate via e-mail because I do not want to sound like a crazed fan or something. I have a scarily smart rheumatologist who oversees various infusions and inflammations and serves as my de facto primary care doc, but her office is busy and isn’t made to handle acute (but minor) things that aren’t technically related to rheumatology. I still have a handful of other specialists who deal with isolated problems and body systems, and I see them and undergo their suggested tests.

I am not arguing against specialized medicine. I would be foolish to do so. If it weren’t for advanced, sub-specialized care, I never would have received diagnoses for rare respiratory diseases, diagnoses that have changed my life. I depend on the cutting-edge research into ridiculously niche problems my specialists conduct to maintain my quality of life and hopefully change the future outcomes of progressive diseases like mine.

That’s no small order.

But whom do I turn to when I have a nagging headache that persists for weeks? I know (because after 20 surgeries, you just know these things) it isn’t sinus related, and my eye prescription is current. What about the fleeting dizzy spells and intermittent fog that is different from the chronic fatigue or adrenal depletion? Do I start with the ENT doc and move outwards after that? Call up the rheumatologist and see if she’ll take a crack at it?

And what about all the normal things other people get checked for during physicals? I can’t remember the last time I had a physical. I know that many, many important things in my body are monitored regularly, but for all the sophisticated tests and labs I have, are there smaller routine things no one is checking because everyone is looking at something different?

I’ll figure it out, I know. I have a lot of weird issues that necessitate a lot of doctors and I can’t argue against that.

But when niggling things manifest, I’m not sure any of them are appropriate people for me to bother. I’m thinking of taking the plunge and getting a certified primary care doc. I hear they’re something of an endangered species, and I fear people like me are largely responsible for that. But if they’ll have me, I just might like one of them….

Thursday, September 27, 2007

Radio Debut...

I'm branching out a bit: To my surprise and pleasure, I was contacted this week by the co-host of Get Real Girls, a popular weekend radio show that airs in Minneapolis on FM107.1 and online at The show is devoted to helping women live their lives with intention and purpose. This weekend, they are focusing on letting go of guilt, and after reading an essay I wrote that appeared on Chronic Babe, they selected me as the Get Real Girl of the Week.

The interview will air this Saturday and can be found on, where they also have a brief feature on me.

I promise I will try not to talk too fast. This is no small promise.

Friday, September 21, 2007

September Lessons

I’ve always loved fall. Some of my reasons are more typical ones: I love the vibrant colors of the leaves, the smell of burning leaves, the cool days where I can wear a sweater and not be too hot or too cold, the abundance of root-vegetable inspired dishes. I love the way the nutmeg and cinnamon-scented candles I use to replace the flowery smells of summer fill my living room, and the way the smoky aroma of grilled meat at football tailgates lingers in the air.

Plus, I am huge dork. Fall has always been synonymous with “Back to School,” and for dorks like me, this is a big event. When I was little, I would start planning my back to school shopping in July—not the clothes, mind you, because I wore a uniform from first grade through high school. No, much to my brothers’ horror, I was focused on such weighty issues as Trapper Keeper versus regular folders, erasable pen versus regular pens, and whether I wanted standard or college-rule lined paper.

And summer reading? I’d have finished it all within the first couple of weeks of summer and would count on the diligent notes I’d taken to refresh my memory in late August.

Obviously the older I got the less critical things like Trapper Keepers and erasable pens became, but fall (and September in particular) continue to have meaning for me, and my reasons for this are less typical.

For starters, the simple act of breathing is easier. True, my temperamental lungs never handle the change in seasons too well, but once we’re firmly entrenched in fall weather and I can say goodbye to the humidity that suffocates me, I am happy. I don’t mind the infections as much if in between them I can actually inhale and exhale without feeling like I will never get enough soupy air.

But beyond pragmatic changes like the weather and going back to school, for as long as I can remember fall has also been synonymous with this thought: “Maybe this year will be my year.” The clean slate I’ve been waiting for, the fresh start every student gets, the year no major calamities occur.

When I was little, “my year” would have looked something like this: No surgeries to accompany almost every holiday and long weekend. No weeks’ long absences. No streams of blood gushing from my ears, ruining my pillowcases and making me hesitant to sleepover friends’ houses. No missing birthday parties and ballet recitals and skating shows because I was too sick. No broken bones and casts with classmates’ signatures, no missing the bus because I needed another nebulizer treatment. No sitting on the sidelines at Field Day every May, watching everyone else run and compete.

In college, “my year” would have looked something like this: No missing weeks of classes each semester due to hospitalizations. No needing my friends to take me to the hospital or visit me during my longer stays. No needing to ask to borrow notes or make up more essays, no needing to conference call the campus newspaper from my hospital bed, oxygen mask and all. No needing to worry my parents with late night calls from the ICU, no getting worse and worse despite the more medication I took. No more feeling like all I did was put my life on hold for illness, and no more feeling like however much I gave up for illness, it would never be enough to make me feel better.

It was a vicious cycle of disappointment I set up for myself. Obviously I never got a year like that, and the more I wished for one and counted on that fresh, clean slate to feel normal, the harder it was when it never happened.

I still get excited for September, and I still get anxious to go back to school. I enjoy my writing students and their work, and I like the structure and routine of semesters. But I no longer count on each September to herald in “my year” and I am much happier because of that.

Don’t get me wrong, it is not that I have become resigned to crises and medical issues, or that I have given up hope that an uncomplicated medical life exists somewhere out there, and I am happy to say that the crises aren’t as pronounced as they used to be. But I’ve stopped setting up expectations that are counterproductive. It’s not about starting over each September with a clean slate or getting back to normal (whatever that normal is); it is about accepting that where I am, disruptions and all, is what is important.

Sunday, September 16, 2007

So What About the Healthy One?

I started a line of thought in my most recent post that warrants its own entry: the reason no illness is ever truly invisible is because the people who love us can decipher the many signs and symptoms of illness no one else can. I think it’s important to explore what it’s like for our partners or spouses when a shared illness is invisible, because it isn’t easy. It isn’t fun, or glamorous, or fleeting.

And it certainly isn’t fair.

I mentioned previously that my husband can tell from the single word “hello” if I am having a bad day. The reason he is so attuned to me is because he has spent our entire relationship doing things for me and because of me that no one ever sees:

Performing my chest PT when I need an extra treatment. Racing to hook up my nebulizer when I can’t get it myself. Picking up my prescriptions and accompanying me to doctor appointments when I am too weak to get there on my own. Eating outlandish food that does not contain wheat, poring over recipe books to make my limited diet more interesting. Wiping my forward when I am clammy, holding my hand when I have palpitations. Taking me to the ER and spending nights wide awake next to my hospital bed. Rubbing my back when I cannot stop coughing and knowing when to thrust the spit cup under my mouth. Staying nonplussed when steroids make me moody and unpredictable, carrying things for me and doing all the shopping and housework and lugging when I cannot help him at all. Understanding when we have to cancel long-awaited plans, miss outings and trips, or have to leave early because I am not feeling well.

(Loving me when I am at my lowest, loving me when I cannot recognize myself.)

And these are just the physical things, the actions and reactions precipitated by symptoms and medications and infections. I cannot leave out all the other realities of his life with me: The enormous medical expenses that will never go away. The financial ramifications of the career choices I have made in the interest of my health. The fact that in some ways, we are limited by my illnesses in ways that have nothing to do with stamina, oxygen stats, or infection rates. The fact that no matter what, progressive diseases mean things will never be uncomplicated and there will always be nagging fear.

“You’re sure you know what you’re getting into, right?” I asked him during our engagement, only half-kidding. But the man who was not scared by IV bruises the night we met, who did not mind spending part of our honeymoon scouting out a Walgreens and playing Scrabble while I used my neb, does not seem daunted.

(He’s crazy, I think to myself. And I’m lucky.)

Acquaintances are surprised if they find out I am sick, and friends who do know often do not realize it is in any way life-defining. This is because I look healthy when we split bottles of wine and pore over appetizers; this is because they do not see me on any sort of day other than a good one (and lucky for both of us, there are so many more good days than there used to be). So aside from my immediate family, I do not think many people realize the cost of invisible illness for him, for anyone who chooses to spend their lives with people who will have good days but will never be healthy.

I do not think my husband spends much time thinking about this, or wishing people understood the pressure and responsibility of illness. But from my perspective, I think it would be hard for anyone in his position. Because for as many people there are who ask me how I am doing and how I am feeling, far fewer stop to ask him how he’s doing with all of this, how he’s feeling. I am the patient, so I am afforded the empathy and the queries.

And so in the background stands the person most responsible for all the days when I can safely tuck my illness away underneath invisibility, and no matter what I can hide from outside eyes, it will always be visible to him.

(Even when I wish it wasn’t.)

Individual symptoms and diseases are less important than the fact that whatever is wrong with someone directly influences the people in his or her life. With that in mind, and all the other healthy people involved in relationships with patients of any chronic illness, I want to point out that the Well Spouse Association’s 19th Annual Conference is happening this October. For more information, click here.

Monday, September 10, 2007

Seeing the Scope of Invisible Illness

Today kicks off National Invisible Chronic Illness Awareness Week, making it the perfect time to tackle the realities of living with illnesses that aren’t obvious to the naked eye. This year’s theme is “Living with an Invisible Illness Feels Like a Roller Coaster—Help a Friend Hold On!”

As someone with many different invisible illnesses, I find this theme compelling. On the one hand, it implies that this kind of life can be difficult and that patients need support and understanding—very true. Yet it isn’t as simple as that. The roller coaster metaphor immediately conjures of memories of white-knuckled ascents up steep hills and the rush of relief that follows. These highs and lows, the white-knuckled anxiety and the carefree moments, they are all part of invisible illness.

But You Don’t Look Sick
You knew I was going to start here, didn’t you? That’s because of all the issues tangled up in this discussion, this is the most obvious and probably most relevant. Why even bother having a National Invisible Illness Awareness Week? Because when you’re sick and there are valid reasons why you can’t do something the way you want to or are worn out or need help and you look otherwise healthy, that disconnect can cause big problems.

If I don’t look sick, then I must not be sick. If I don’t look sick, then I shouldn’t need to take the elevator when I am carrying a heavy bag and four flights of stairs seems like it would take way more oxygen than I can get. If I don’t look sick, then I shouldn’t have to re-arrange plans to accommodate chest PT sessions, or quietly leave the dinner table so I can cough without making a scene.


Similarly, people with serious illnesses who do not “look” disabled shouldn’t need handicapped parking placards, or people who are young and dress well and wear make-up couldn’t possibly have a life-threatening or life-altering disease because truly sick people are only found in hospital beds, wearing faded johnnies and cracking wan smiles, and they certainly don’t look like normal people. I know enough people with enough invisible illnesses to know that this kind of thinking happens all the time.

This is the frustrating, anger-inducing part of the roller coaster metaphor, the one that quickens my pulse and flushes my face. I’m not asking for or expecting understanding from these people. I don’t really need it, and I’m not expecting miracles here. But there are times when I just want them to keep their preconceived notions of what sick looks like and their judgmental indignation to themselves.

Escape, Sweet Escape
I’ll be honest, there are lots of times when I am glad that whatever is wrong with me is largely undetectable on the outside. Sure, it can be isolating to feel like crap and slog through the day, trying to be “normal” and feeling so far from that. But there is a very real upside to this isolation: Escape.

Remember that rush of relief when the stomach-churning drop is over? That’s what I’m talking about. “Carefree” is not often a word associated with illness, but I’d say “caring much less” is a big part of it.

If no one knows anything is wrong with me, then for a little while, whether it’s at work or out with friends or riding the train, I can suspend reality. Having chronic illnesses is only one part of who I am, but sometimes necessity dictates that it seeps over into the other roles I take on, too. I don’t want to always think about, talk about it, make decisions based on it, or be associated with it.

And luckily, I don’t have to. The public, non-patient persona is really important to me—and, I’d argue, anyone with any type of condition—because, quite simply, it allows me to define myself in so many ways that have nothing to do with illness. Illness is always there, obviously, but it’s in a back-seat role.

And Lastly, the Invisible Made Visible
There’s something else to uncover in this discussion, something that perhaps isn’t as obvious a theme as the first two: To the people who really matter (and the people whose opinions likewise really matter), there is no such thing as “invisible” illness.

My mother can tell just from looking at my eyes (Are they glassy and flat?) if I am having bad day. My husband knows from the tone in my voice from one single word—“hello”—if I am not doing well. Even at a distance, my father can tell from watching me take two steps how I’m feeling. My friends know the subtle difference between the “just me being me” cough and the “hmm, something’s brewing” cough, even if I’m not even coughing all that much or that loudly.

I know how important having that inner sanctum familiarity is. I can see the same signposts in the sick people I am closest to: the slackened gait of exhaustion, the subtle grimace of joint pain, the tempered tone of tiredness. To the people who know us best, there are always telltale signs, ones that no one else would notice. As long as we have people who can see beyond what’s seemingly invisible, we have what counts, and the ride seems so much more manageable.

Wednesday, September 05, 2007

Medicine and Social Networking: An Inevitable Pairing?

Last week, I read with great interest this post from Hospital Impact about technology, health care, and the Facebook generation. The points raised are compelling ones, namely: Is social networking is a better vehicle to foster community and spread awareness of health care innovations? Does it successfully integrate health care into daily life? Would health care providers benefit from social networking, and would viral marketing benefit practitioners and patients alike?

While I was pondering these questions,, a consumer health search engine, launched its first Facebook application, the Healia Health Challenge. I use Facebook (albeit somewhat sparingly). I’ve used Helia. What would it be like to combine the two? Intrigued, I tried it out. (More specifics on the application follow below).

Of course, a whole new set of questions sprang to mind. Does the tech-savvy consumer/patient have emerging needs that depart from what more traditional Web forums, online communities, or list-servs can satisfy? Is this technological shift inevitable?

Between the great post at Hospital Impact and Amy’s query at Diabetes Mine, it’s clear the medblogging community has a lot to say about what it wants from health sites. As a corollary to all of this, I interviewed Jonathan Shaw, a marketing associate at, to what he had to say about healthcare and social networking. Here’s some of our discussion:

Q: Let's talk about social networking and healthcare innovation. What made you reach out to Facebook as compared to, say, exclusively health-related online communities?
A: When Facebook opened up its API to developers to build their own applications, we immediately realized we had a great opportunity here. We saw that we could create an application that’s both fun and educational, and can raise awareness about our search engine in a rapidly-growing medium. We do follow the health-related online communities closely, but we haven’t seen this sort of opportunity anywhere else yet – certainly not with the sort of exposure to a wide audience that Facebook provides.

Q: The Facebook application is a health quiz where top-scorers are designated "Chief of Medicine." What factors went into creating this type of quiz? The style and content cover a broad spectrum of health issues but at the same time, they speak to a particular type of healthcare consumer. Does the "Facebook generation" have different needs than other healthcare consumers?
A: We wanted our application to be fun but also stoke young people’s curiosity about health issues. Many of the questions in the quiz were sparked by lunchtime conversations in which we bantered about health-related issues with uncertain facts. One of us had heard that carbonated water is supposed to be bad for you; others hadn’t heard that. Who was right? We used Healia to get to the bottom of these mysteries and we wrote our answers based on what we found. Through this process, we learned about common health myths and included these in some of the questions. From what we’ve heard so far, people are sometimes surprised by what they learn through the Healia Health Challenge.

(Editor’s note: Despite an embarrassing mix-up between HDL and LDL cholesterol and a misstep here or there regarding things like caffeine’s ability to help a hangover, I rocked the Healia Health Challenge. That’s right, you can call me “Chief of Medicine.” It was fun, especially since I am a medical dork and am oddly competitive about objective tests I take by myself.)

Q: Do you have any other plans/developments in store in terms of Facebook and the Healia Health Challenge?
A: We definitely want to keep this application interesting for Facebook users who’ve installed it, so we’re currently working on a new set of questions. This is a fun, creative process and if you’ve got any ideas for questions we should cover, please send them to our Marketing Manager, Tassie DeMoney:

At the end of the day, I’ve proven that I know a lot about topical health care issues and now have an application on my Facebook page that tells people this, allows them to test themselves, and introduces them to a useful online resource. But is this first step the start of a new technological revolution for the health care consumer? You tell me.
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