Category Archives: Upkeep

Medicine and Social Networking: An Inevitable Pairing?

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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, Healia.com, 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 Healia.com, 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: tassie@healia.com.

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.

What’s the Deal with Dairy?

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I’m turning to you, thoughtful readers of the blogosphere, for some input on a decision that has been slowly building traction in the back of my mind for several days now.

Should I go dairy-free?

I saw my doctor this week, a follow-up appointment to see how I’ve responded to my antibiotics. My respiratory infection has definitely improved, but my bronchiectasis exacerbation from it is still pronounced, so I have a handful of new meds and inhalers to try and quell the chaos rumbling in my airways. I don’t even remember how it happened, but dairy came up in our conversation. Of course, I’ve long known that dairy is a mucus-producer, and if there’s anything I don’t need, it is more phlegm in my life.

“I really don’t consume much dairy,” I told him, sheepishly looking at my cup of coffee on his desk, which clearly contained milk. I don’t even like milk; even as a kid I never drank it on its own, it was merely a conduit to moist cereal, and as an adult, it’s merely a conduit to what I think is better-tasting coffee.

But when I thought about, I do have dairy often enough. I eat cottage cheese a couple of days a week because it’s a great protein source, and while I try to avoid cheese because of its fat content, I do have feta on my Greek salads regularly.

“Well, the less dairy you have, the better,” my doctor said. I nodded.

The seed was planted.

And then I stumbled across this site in the comments section on Kerrie’s blog (ironically, her original post included something I’d written about going gluten-free, so I’m now engaging in an amusing but totally productive game of blog-tag, I think 🙂 ) and I started to think about giving up dairy more seriously.

Enter the back and forth dialogue in my mind: It would certainly be a big sacrifice, lots of labels to read and accommodations to make. Yet so was going gluten-free, and you wouldn’t change that for anything, you know you feel so much better. Yes, but I have celiac disease, so clearly going GF would make me feel better–I am not lactose intolerant and don’t think I feel any worse when I eat dairy, so would I even see results? But don’t forget, you know you get more congested after frozen yogurt, so even if the only change was less phlegm and less exacerbation, wouldn’t that be worth it?

And, finally, the remaining question: But your diet is already so limited. Wouldn’t removing dairy make an already difficult dining situation (remember, one of your hobbies is trying new restaurants!) even harder?

Yes, but if it helped, wouldn’t it be worth it?

Leaving the dialogue in my mind alone for a second, what you do think? Is it worth a try? Is it something worth doing in degrees–eg, removing “big” thinks like milk, cheese, etc but not whey and all those little tiny ingredients that appear on labels? (This reminds me of people who go wheat-free but still eat many other forms of gluten). Would I still get any benefit, or, like going GF for a celiac, is it something that only works when you do it 100 percent?

Keeping it Simple

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“Basically, your dog is scared of life,” the vet said.

Great, we thought to ourselves. How exactly do we go about resolving that?

Now I am not one to engage in pet blogging, mainly because I recognize few people will ever find my dog as charming, adorable, or entertaining as I do. But I made an exception in this case, as the vet’s words and her words of instruction lingered in my head all week.

Admittedly, my dog (who is, incidentally, as charming, adorable, and entertaining as they come) does have some issues. She was abandoned twice before we adopted her from a rescue as a puppy, and she has an exorbitant amount of fears: anything with wheels (bikes, strollers, skateboards, scooters, wheelchairs, roller blades, luggage, etc), anything that makes a sudden noise, anything that causes sudden motion, anyone she doesn’t know, etc. The daily hum of anxiety that accompanies her intensifies into sheer panic when we’re not around her, since apparently we’re her ultimate security blanket.

“The best thing you can do for her is to let her experience life. Expose her to as many things as possible and help her learn to see she doesn’t have to be scared of every new thing,” our vet told us. Of course she gave us even more specific instructions, but her overall assessment was powerful in its simplicity.

Just live, just do, and you’ll get to the point where you’re so busy doing and living that there’s no room for fear.

I don’t have an anxiety problem, nor am I besieged with fear by things with wheels, things that move, things that make sound, strangers, or anything I’ve never seen before. By no means am I scared of life. But I do doubt my body sometimes, doubt that it will be up to the task at hand, doubt that it will come through for me when I depend on it.

I had my sweet, scared little girl in mind this week when I did something I haven’t done in years: I rode a bike. Not a stationary bike in a city gym like I’ve ridden for years, but a regular old dusty dirt bike. And I didn’t ride through the suburban developments and sidewalks of my youth, but on an honest-to-goodness trail, a pretty famous trail, even if I only did part of it.

Once I got my license as a teenager, I left my mountain bike in my parents’ garage to collect rust and cobwebs. In the ten years that have elapsed, my body has been through a lot. I was already well accustomed to my lungs preventing me from doing things, (I’d dealt with that since birth), but something in me changed after my adrenal system crashed. I got so used to my body failing me and so used to the small losses that amounted to a significant whole that I forgot how to trust my body again.

It’s been three years since my body came to a standstill (literally) and physically the symptoms of adrenal depletion are so much better, but my mental conditioning hadn’t caught up completely. I put in long hours, I work seven days a week, I go to the gym, but until this week I hadn’t pushed myself out of my comfort zone because it didn’t even occur to me I’d be able to.

The day we set out to ride, the humidity was temporarily gone, my infection was under control, and for once, my lungs were cooperating. Now, would the rest of my body?

It was never the bike that I feared, it was the possibility that I’d get several miles out on the trail and something would happen and I’d get stuck there, or that I’d start the day feeling pretty good and end it in a state of setback.

Instead, I got on the bike and just rode. And rode. And I was too busy moving that I didn’t think about what my body might not be able to do.

Simple advice, really.

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Rainy Day Reflections

I’ve been too busy lately to do a lot of things. Writing deadlines to meet, student essays to comment on, fellowship submissions due and a nasty respiratory infection all converging during the same week left me feeling run down and out of touch with the people and the things I care about.

The tighter my chest got, the more achy my leg muscles became, and more I realized how long it had been since I had seen my friends, the more I knew I needed to make some changes:

Step 1: I started a course of very strong antibiotics and resigned myself to using my nebulizer a lot more often than normal.

Step 2: I saw my friends not once but twice on Saturday—and luckily, I had a husband who was willing to chauffeur me around since I was too exhausted to get there on my own. Catching up with some of the girls was wonderful—we keep in touch via e-mails and voice mails, but seeing them in person and having time to really talk was just what we all needed, I think.

Step 3: I read the whole Sunday paper today, something I haven’t had the luxury of doing in months. It reminded me that I was allowed to take some time to relax, that there is a state of being between overdrive and bedridden.

And then something happened that made me even more refreshed and energized. I was at Sunday Mass when they announced they were offering the Anointing of the Sick following the service. I’d been anointed before when I was critically ill, but it occurred to me that I was asking a lot of my body right now and would be asking even more of it in the near future and I could stand to be anointed.

As the priest said the prayers of healing and hope, I couldn’t help noticing the other people who formed the circle around him. There were about 20 of us in total, and together we spanned several decades, several ethnicities, and inevitably, many different kinds of illnesses. Yet I couldn’t tell from looking at any of them what was wrong—and that was exactly what I needed.

Our circle reminded in a very real and immediate way that I am not alone, that every day there are people all around me who must also find ways to balance all the forces in their lives in addition to illnesses. Their challenges might not be visible to the outside eye, but they are still there. After weeks of feeling isolated by my infection and exhaustion and my workload, it was a relief to feel a sense of community.

As I listened to the priest’s words, it hit me that there are many definitions of the word “healing.” I wasn’t looking for my conditions to be healed, nor, I realized, did I need them to be. Healing can also mean returning to a place of hope and faith—in our own bodies, in the ones we love, in the unseen community that supports us when we don’t even realize it, and in whatever form of spirituality or reflection we subscribe to.

Turned out to be the most productive Sunday I’ve had in a long time.

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When the Therapist’s Away, the Dog Won’t Play

My beloved therapist Steve is away for the week. Considering the guy sees at least three patients a day for chest physiotherapy on top of a full-time job, he deserves way more than a week’s vacation. Selfishly, though, I am glad he never leaves Boston for too long.

Anyway, I can (and will) write at length about my unique relationship with Steve–besides my husband, no one sees me more regularly and no one has that much pysical contact with me–but today what’s on my mind is the state of affairs when he’s gone.

I recently purchased a contraption called The Vest. I always feel like there should be some segue into that, like Dum Dum Dum..THE VEST. It’s an interesting (bizarre) contraption consisting of a generator that forces air into two tubes that attach to a vest that I buckle myself into snugly. When I rev up the frequency and speed, the air fills up the vest (I inflate like the Marshmallow Man) and vibrates rapidly, theoretically shaking the lobes of my lungs and loosening mucus that gets trapped there because of my PCD and bronchiectasis.

And it does–but it rattles everything else, too. It makes my arms and legs jiggle with every passing second (no amount of gym-going would protect me from this ugly scene), and when I try to speak, I sound warbled and almost like I am sitting on top of a washing machine moving at jet-engine speed.`

I don’t know about any of you out there, but I find The Vest effective. Not nearly as good as the sturdy clapping Steve gives me, but it makes me cough often enough to feel like it’s working at least somewhat. And failing everything else, it’s a great party trick. I can’t tell you how many friends of mine think it’s really cool…until I strap them in and they realize it’s actually not that cool to feel like the breath is getting squeezed out of you. They say it hurts, but by this point, I just find it uncomfortable.

The real issue with The Vest is that is it loud. LOUD. And my dog Sasha is a complete basketcase when it comes to sound. Seriously. She knocked over pans in the kitchen and went on a two-week hunger strike just to avoid being anywhere near the pans again. It was so bad we took her to the vet, who diagnosed her with doggie PTSD (post-traumatic stress disorder) and told us to put flower essence into her water to calm her down.

So, put a loud and potentially scary machine in the same tiny living room of my condo, and it’s a bad day in Sasha’s world. When it’s turned off, she slinks by it, giving it dirty looks. When it’s on, she dashes out of the room and cowers into the bedroom. After that, it takes her a few hours to even come near me again, and even then she somehow manages to give me a withering look.

Steve, come back home! As much as I miss you, Sasha misses you even more!

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Preventative Medicine in a Chronic World: The Illogical Logic of Health Care

You only need look on the cover of any number of mainstream magazines or flip through the newspaper to see how much discussion there is about chronic illness in our country. Football stars appear in television ads for asthma prevention, and well-packaged ads plugging medications for long-term conditions grace our screens so often nowadays that I can recognize their corresponding theme music from the other room.

With this increased awareness of chronic illness is an understanding of the economic impact of such long-term medical problems. Lots of people are living longer and living with conditions that require a lot of care. According to the Healthy People 2000 Final Review, put out by the Department of Health and Human Services, the direct medical and annual costs attributed to these conditions total more than $3 billion, or four percent of the nation’s gross national product.

That’s a whole lot of money at stake, and as much as I hate to admit, the business of health care is, above all else, a business. Does that strike anyone else as a monumental—and inevitable—conflict of interest?

The logical thing would be to provide as much preventative care as possible, right? The more we can control our symptoms and the progression of our diseases, the less likely we are to need longer hospital stays, costly surgeries, and additional medication. It’s a win-win situation—we are healthier and happier patients and insurance companies save money when they don’t have to cover skyrocketing hospital bills and expensive procedures. Overcrowded and overworked hospitals would even benefit if chronically ill people like myself weren’t always clogging their wards.

But it doesn’t work like that. Let’s take the example of my daily chest physiotherapy (chest PT) since I’m currently embroiled in a messy battle to get it covered. Chest PT involves a vigorous “clapping” the lobes of the lungs in eleven different positions by a trained professional to dislodge the mucus that collects in the lungs. Since my lung diseases mean mucus and infection build up in my lungs each day, chest PT is an essential component of my treatment plan—without it, my infections linger longer and get much worse, often leading to respiratory distress or even respiratory failure.

Before I got correct diagnoses for my lungs and I didn’t have chest PT, I spent weeks and weeks in the hospital each year, including stints in the ICU for collapsed lungs and pneumonia. Let me tell you, several days in the ICU and multiple x-rays, procedures, tests and monitors doesn’t run cheap. Multiply that by several trips, and it runs into thousands and thousands of dollars.

You’d think then, that my insurance company would rather pay for the much-cheaper daily chest PT and help keep me healthy than wind up paying truly shocking amounts of money when I am constantly in and out of the hospital. Surely such a sound preventative measure makes sense both financially and in terms of common sense.

But no. I’ve changed health plans five times in seven months due to employment changes, and each time I switched, the worse it got. One company refused to cover any chest PT after two weeks’ worth of sessions, and another wouldn’t even do that. It offered to send a therapist out once to train a family member, leaving arguably the most critical part of my treatment plan in the hands of well-meaning people who didn’t know how to use a stethoscope or locate any of the lung’s lobes.

After months of phone calls, faxes, and letters of medical necessity from my doctor, I finally won a battle, but winning the war is looking increasingly futile. I have coverage for three sessions a week for four months, but since they decided to apply it retroactively, I really only have coverage for another month. After that, no one knows what will happen, and even with this small victory, my husband and I have already shelled out $2100 towards chest PT in the past several months.

I wheeze more, I’ve had more viral infections and decreased oxygen saturation, and I’m running out of money—and I am still one of the lucky ones who even has health care. The chronically ill population is only going to grow—hopefully, there will come a time when attitudes towards our care with evolve with us.