Mid-Week Reading: Shared Experiences and Health Social Networking

Posted on by
2

It’s that time again! The March Pain-Blog Carnival is now posted at How to Cope with Pain, featuring the month’s best posts about living with chronic pain. New bloggers are always welcome to contribute.

Speaking of sharing insights and experience, I’m sure you’ve come across this New York Times Magazine article called “Practicing Patients.” It discusses PatientsLikeMe, a web community which “seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience.”

For patients with diseases like Parkinson’s, MS and AIDS, real-time discussion and analysis of treatment methods, dosages, and relatives success can provide invaluable—and hard to find—information.

This has been a big week in the health social networking world—Healia.com, the health search engine I’ve written about before in conjunction with social networking, just announced the launch of Healia Communities. The site is “a free online health community that enables people to get personal support for their health decisions from peers and experienced health professionals … Healia Communities allows people to share their health knowledge, experiences and favorite resources; provide personal support and connect with people sharing the same health concerns; and get answers to their questions from health experts,” according to the press release.

More than 200 health communities exist right now, and a feature that distinguishes the site from other patient disease sites and groups that connect patients with each other is the additional access to health professionals who can also help answer questions.

What dedicated blog carnivals and online communities like the two mentioned above point to is the ever-increasing influence of technology over the patient experience, a vital exchange of experience and practice with the potential to do much to improve how we manage disease. Check them out and see if they are the right fit for your needs.

Facebook Twitter Email

Trends and Prevention

Posted on by
3

“Trends” is a big buzzword in healthcare. As such, I can’t help but notice a trend of my own. Yes, it is Easter, and yes, instead of Easter brunch with the family, I am hunkered down on the couch, nursing a fever and infection.

Sound familiar?

Let’s review: Thanksgiving (freak infection spread to my jaw; dinner was consumed via straw); Christmas (nursed a cold but unlike many Christmases, wasn’t in the hospital); New Year’s (very serious infection that felled me for weeks). On the bright side, at least I haven’t had to worry about the traditional holiday food hangover the past several holidays.

There really isn’t more to rehash about this trend of mine except that it broke my 11-day streak of being infection-free, a personal record since early October. So instead, I’ll turn this idea of chronic disease trends outwards.

The Partnership to Fight Chronic Disease and the Milken Institute released a new study that puts the annual cost of seven common chronic diseases (cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions and mental illness) at $1.3 trillion.

Of that amount, a staggering $1.1 trillion is the result of lost productivity. Since I spend an inordinate amount of time trying to meet deadlines when I am sick, I can’t help but focus on this particular statistic about work, productivity, and illness. Since we live in an age where economics, healthcare, and quality of life are increasingly linked together and increasingly strained, I can’t help but focus on this study as a whole.

Sobering information? Definitely. But there’s a bigger message in these results, a positive one: most of this economic impact is avoidable through effective disease prevention.

In fact, according to an article on the PFCD’s site, “The study is the first of its kind to estimate the avoidable costs if a serious effort were made to improve Americans’ health. Assuming modest improvements in preventing and treating disease, Milken Institute researchers determined that by 2023 the nation could avoid 40 million cases of chronic disease and reduce the economic impact of chronic disease by 27 percent, or $1.1 trillion annually. They report that the most important factor is obesity, which if rates declined could lead to $60 billion less in treatment costs and $254 billion in increased productivity.”

There’s reason to hope this trend doesn’t have to continue.

(And with winter almost behind us, there’s reason to hope my own trend won’t continue, either. After all, my track record for July 4 is practically spotless!)

Facebook Twitter Email

Writing Well

Posted on by
10

Coming from keyboard of a writing instructor, those two little words might just conjure up images of sentence diagrams and arcane grammar rules. While I do admit to making my advanced writing students suffer through a brief “it’s/its” and “there/their/they’re” refresher (because really, can I release them into the real world without knowing the difference?), I have no intention of discussing writing mechanics here.

No, I’m much more interested in a far more compelling meaning of “writing well.” A few months ago, I mentioned a creative writing program for pediatric patients with chronic illness I was given a fellowship to finish developing. I spent more than a year consulting with doctors, pediatric social workers and other experts and compiling extensive research to make the case that if you give pediatric patients the tools to express their feelings and emotions about illness, the benefits are manifold: better adjustment and attitude towards illness, increased compliance with treatment plans, increased quality of life, and decreased hospitalizations and costs.

It’s a win-win situation.

Though I’ve had to step away from active implementation of the program temporarily, I remain committed to seeing it come to fruition, and remain committed to my belief in the power of words to heal. And certainly, witnessing a thriving medblogging community only furthers my belief in this.

Of course I had a lifetime of personal anecdotal experience to motivate me—when I was a child sidelined with illness, I read and wrote constantly. The sicker I got, the more pages I read and the more pages I wrote.

However, I used something far more concrete to help build my case: research published in JAMA that showed patients with asthma and rheumatoid arthritis who wrote about their illness experience manifested better health outcomes than the patients who didn’t.

I am happy to report there is more evidence to help make the connection between writing and wellness even stronger: a recent New York Times article by Tara Parker-Pope called “The Power of Words for Cancer Patients.” Researchers followed 71 adult cancer patients who wrote about their illness experiences while waiting for their routine oncology appointments. They were asked write about how cancer changed them, and how they felt about those changes.

According to the article, “After the writing assignment, about half of the cancer patients said the exercise had changed their thinking about their illness, while 35 percent reported that writing changed the way they felt about their illness …While a change in the way a patient thinks or feels about a disease may not sound like much, the findings showed that the brief writing exercise led to improved quality of life.”

Writing about illness is far more than merely a coping therapy. Expressive writing can be transformative. The article quotes one study participant as saying the following about the writing process: “Don’t get me wrong, cancer isn’t a gift, it just showed me what the gifts in my life are.”

Seems like no matter what your age or illness is, if writing can somehow get you closer to that point, it’s worth a shot. Right?

Facebook Twitter Email

A Fresh New Grand Rounds is Up at ChronicBabe

Posted on by
1

And I do mean fresh, considering this week’s theme is “New Beginnings.”

Jenni Prokopy, founder and editrix of chronicbabe.com, “a site for young women with chronic illness who strive to live well in spite of health-related limitations…to be babes!” did a great job compiling diverse and compelling perspectives on fresh starts–with spring on the horizon, it’s perfect timing!

Facebook Twitter Email

Re-Calibrate, Then Restart

Posted on by
6

Re-Calibrate, Then Restart

“Um, you’re going to re-calibrate your definition of ‘feeling sick.’ Starting now,” one of my doctors said to me this week, clearly not impressed with my nonchalance.

The thing is, I wasn’t even being nonchalant. Not purposely, anyway. I was simply conditioned to be oblivious.

I’ve said before how so many aspects of living with chronic illness are universal—no matter what your particular symptoms or conditions are, there are some static themes. The more I write and the more experiences I cull together from other patients, the more firmly I believe this.

But it’s larger than that. So many things about living with chronic illness are universal, period. Whether you’ve been sick since birth or have never had more than a cold your whole life, still emotions and patterns resonate.

Recent events and twists and turns in my health status have made this especially clear.

Example #1, Stuck in a rut-ness: Is it me, or is the tendency to get stuck in a routine or pattern directly proportional to the longer and colder a winter is? Indoor workout routines get dull and less effective, piling on sweaters and layers of pants gets boring and repetitive, getting up in the morning when it’s still dark gets old fast. Yet there’s not much we can do besides hit the “repeat” button and keep on going.

Personally, my winter rut has been one punctuated by infections. While respiratory infections are an occupational hazard of being me, this winter has been beyond the norm. Since October, I haven’t gone more than 10 days without an infection. Bacterial, viral, ones that fester in my lungs and ones that invade my upper respiratory system—it’s definitely been an equal-opportunity season.

So hopefully it’s somewhat understandable that during the past two weeks when I felt exhausted, feverish, and had muscle and joint pain that I attributed to something else (more on that in a minute), it didn’t occur to me to do anything except go to work and keep doing what I needed to be doing? And that it didn’t occur to me that it could be the flu?

“I’m just gotten so used to feeling like I have an infection that I no longer stop to think about it too much,” I told my doctor. “It’s beginning to feel like normal, or at least not that sick.”

Hence the “re-calibration” comment, some in-office nebulizer treatments, and orders to stay in bed for several days.

“But can I teach my last class before spring break first? It’s in an hour,” I said.

She was not amused.

Example #2, Adaptation and Loss: Think about a loss in your life. Was it a bad-break-up? A close friend or family member moving away? Everyone’s experienced what it’s like to have a constant disappear from your life, and the adjustment period it takes to get used to its absence. Sometimes, it isn’t till you stop and realize you’re no longer consciously thinking about it every day that the absence is real.

Allow me to turn this around a little bit. Four years ago when steroid withdrawal caused my adrenals to crash, constant muscle pain and overwhelming fatigue became a part of my life for the next three years. The burning, cramping pain kept me awake at night and when my legs turned to “concrete” mid-step, I could be stranded. I got used to living like that, to never knowing when my body would halt, to walking slowly and trying not to wince.

My recovery was gradual, very slow, but as the months and years went by and my adrenals recovered, I inched closer to the baseline I had before the crash.And before I knew it, I wasn’t even thinking about that kind of pain anymore. I wasn’t planning errands and factoring in the “concrete syndrome.” I was just being me, and I wasn’t even conscious of the change, of the absence of pain anymore.

So it wasn’t until that familiar burning pain, that last step of the staircase that seemed so far away, that slow, sluggish gait came back a couple of weeks ago that I realized how far I was from that place four years ago—and how terrified I was of ever going back to that constant. (The IV infusion of solumedrol every six weeks for years was also something I was loathe to repeat).

The end result? My adrenals are functioning a bit lower than they should be, but they’re chugging along. Since my adrenal depletion is the result of infections this time around, my doctor is confident they will recover on their own, though it may take some time. And while it may take several more days to settle down from the flu, that too will pass.

So as I face down a spring break filled with catch-up work and recuperation, I have some goals. I need to calibrate my idea of what being acutely ill feels like and start fresh—this means not ignoring fevers or assuming I know what’s wrong when I don’t. No more ruts. I also need to squash back my fear of the adrenal situation, because it is mild and temporary and I have the knowledge and resources to do what my body needs.

It might not be spring for several more weeks here in Boston, but I’ve done some mental spring cleaning.

After all, spring is synonymous with renewal, right? And that’s a universal.

Facebook Twitter Email

Mid-Week Refresher

Posted on by
Reply

Need some quality reading to get you through the rest of the week? Check out February’s Pain-Blog carnival at How to Cope with Pain. During the last week of every month the best posts of that month are featured, and remember, new bloggers are always welcome to contribute!

While you’re at it, be sure to visit Science Roll for this week’s edition of Grand Rounds. This week’s theme is “The Future of Medicine”—see what’s in store!

Facebook Twitter Email

Guest Blogging…

Posted on by
Reply

Loolwa Khazzoom, writer and chronic pain patient, has started a really interesting new blog called Dancing with Pain. It’s chock full of therapeutic ideas, insightful commentary, and, luckily for me, guest bloggers. She invited me to write for her site and the post is up here. Check it out, and stay awhile–she’s got a lot to share!

Facebook Twitter Email

Policy and Protest

Posted on by
7

I’ll start with the preface that I know I am fortunate to have health insurance. It isn’t the best insurance out there but it isn’t the worst and relatively speaking, I know I don’t have much right to complain.

But.

Obviously when we’re talking about health insurance you know there’s a “but,” right?

I’ve long since accepted that the glory days of my past insurance life are over, the days when my Daily Chest Physiotherapy was covered, you know, daily, and routine doctor visits didn’t cost hundreds of dollars. I use Express Pay for my many refills and pretend not to notice what the amount due actually is, figuring I’ll just deal with the full blast at tax time. I take what I can get.

Still, it’s impossible for me not to get fired up at the state of healthcare, at the exorbitant cost of heavily marketed blockbuster “me-too” drugs, at the futile feeling that preventative care is the most important thing we can be doing but is still not a priority to many. I will return to this line of thought in one moment, rest assured!

Recently, I had my own minor little indignation. I picked up my refills and a generic prescription for allergies/sinus congestion I’ve had since 1996 cost 10 times what it did last month. Now that was an Express Pay bill I couldn’t ignore! I made many phone calls to the insurance company and the prescription benefit people and actually ended up conferencing both parties since their knowledge of what the other was doing was so woefully inaccurate. I found out that as of January 1, the medication was no longer covered, despite the fact that we pay extra each month for “premium” prescription coverage and despite the fact that drug is listed on the company website as the “preferred drug.”

The real kicker? No other drug in that whole family is now covered. At all. Huh? Now, I realize that of all my meds it’s the least serious one. It’s not like they took away my thyroid medicine or my heavy duty antibiotics or my refined nebulizer medications. The world won’t end. But, as I said to the woman on the phone, it doesn’t make much sense. Keeping my sinuses clear means less gunk spreads to my lungs and lodges there, which in turn means less need for massively expensive antibiotics and even more expensive hospital trips.

Go figure.

Anyway, just as I was stewing away at the arbitrary and exhaustive ban of all medicines relating to sinus congestion, I checked my inbox. It just happened to be full of links and resources relevant to my position here—and yes, it really happened this way, as contrived as the timing may seem.

So, back to my main point here: Information is power. For all of you who feel frustrated, who are nursing your own indignations and outrages, who want to know what’s really going on with your healthcare and what you can do about it, I offer up the following suggestions:

PharmedOut is an independent, publicly funded project whose goal is to empower physicians to recognize and counteract inappropriate pharmaceutical promotion. Last week they released publicly a slideshow called “The Physician-Pharma Relationship.” Check out the press release and slideshow here.

Not on the Center for Science in the Public Interest’s e-mail list? Click here to check out the site and sign up to get regular summaries of what’s going on in the world of science and health delivered to your inbox. From disclosing financial conflicts of interest in research studies that affect your life to the latest analysis of FDA policy changes and announcements, the Integrity in Science Watch e-mail is a treasure trove of the kind of information you need to have but can’t always get to easily.

It’s no secret that healthcare is one of the most pressing political issues out there. Election year scrutiny got you thinking? Visit the Partnership To Fight Chronic Disease, a great resource that is a “national coalition of patients, providers, community organizations, business and labor groups and health policy experts, committed to raising awareness of policies and practices that save lives and reduce health costs through more effective prevention and management of chronic disease.”

As for me, I’m planning my next phone call to try and remedy this pill situation. Luckily I’ve got plenty to read while I wait on hold.

Facebook Twitter Email

Valentine’s Sensitivity Training

Posted on by
2

Were it not for the steady stream of slushy rain, the flood watch, and the generally miserable weather last night I wouldn’t have considered a Valentine’s post at all. That’s how cringe-worthy I find the obligatory Valentine’s post. But we’ll return to epics floods and wild winter weather in a moment.

First, a quick update on the great plague of 2008:

I can walk. And talk. At the same time. And, without coughing till I throw up or pop blood vessels across my face that even the hardiest concealer can’t hide. This is progress, people. There’s a long way to go, to be sure, but things are more manageable.

Now, back to winter floods. Last year, February 14 fell on a wretchedly damp, raw, icy day. In fact, our city street flooded and then froze, leaving all the cars encased in a couple feet of ice for several days. I remember this vividly because the walk to the subway was an exercise in survival and cabs were nowhere to be found.

I also remember sitting on the nearly empty train car (apparently everyone else decided dinner out wasn’t worth braving this weather, but we weren’t so faint of heart) with my scarf-ed, glove-ed, wind-whipped reflection staring back at me. I was so engrossed in what I was telling my husband I didn’t notice how quiet he was. I was really excited about new research on improved diagnostic measures for PCD I’d read about earlier that day. It was technology I’d already used at my doctor’s office, but I was pleased to see its efficacy confirmed and hopeful that widespread use of it might mean easier diagnoses for other patients (PCD is notoriously hard to diagnose).

Later, as the various courses of our Valentine’s pres-fixe dinner arrived, I was still animated and excited. He was still quiet. I was oblivious, he was frustrated.

Turns out, Valentine’s Day dinner might not be the best time ever for research chat. (Did I mention the obliviousness?)

It wasn’t that he felt we talked about PCD (or any of the other conditions) too much—day to day, there really isn’t much to say. You cough, you wheeze, and with any luck you breathe okay and manage to avoid catching an infection. There’s not much riveting conversation to be had about it.

And it wasn’t that he felt the new research was scary or depressing—on the contrary, it was full of hope and promise, and intellectually he understood why it was encouraging.

This information was good stuff, right? So where was the problem?

But on a night that’s supposed to be about us, the side of medicine, however positive it was, that accompanied our meal was less than welcome.

On a night that’s supposed to be about us, PCD and all its potential, good and bad (and with progressive diseases, the long term potential for bad is certainly a legitimate issue), was also a reminder that someone he loves is sick and he can’t change that or fix it.

And when you love someone, isn’t your first instinct to take away whatever it is that causes them pain or discomfort? (And would you want a reminder, however benign, that you can’t?)

Message received. Timing is everything.

This year is different. The epics rains ended last night and today is actually sunny. We’re driving to our restaurant this year because our reservation is late and now we have a driveway, meaning we don’t need to take the subway because our car is iced in and we don’t want to circle the block till midnight looking for a space.

And I don’t happen to have any new research or facts to share, but if I did, I’d save quoting the statistics and waxing poetic about the methodology for tomorrow.

We won’t need to talk about how I feel, because he will be able to tell by my complexion and my eyes and the way I inhale when I talk exactly how I am feeling and that unspoken understanding is better than any conversation.

Facebook Twitter Email

Gossip, or Good Intentions?

Posted on by
4

So we had a heated discussion in one of my classes this week about patient confidentiality and gossip. Just this morning, I saw this link about a ban on gossip posted on Paul Levy’s blog, Running a Hospital, and figured the forces were aligning in such a way as to warrant a post.

Specifically, we discussed the types of conversations that take place at nurses’ stations, cafeterias, and outside patient rooms. Everyone was adamant that a certain amount of patient information needs to be shared between shifts and between providers for optimal patient care. But they were worried about the fine line between what is medically necessary information and what is merely gossip, particularly when it is shared within earshot of other patients, families, and visitors. They’re all familiar with the axiom “Don’t take it home” in regards to patient information, but several of them wished there was something more concrete in place to help them navigate that precarious line.

Patient confidentiality certainly raises timely questions, and one without easy answers. For example, if a patient has a roommate, there is no way to avoid some information transfer to that roommate and his or her visitors. But when one patient’s relative has extremely detailed knowledge of the roommate’s lab results, family situation, and legal issues, then confidentiality has been breached.

I can approach their discussion from a different perspective. I can see why healthcare providers would need to know about changes in my physical and emotional states when I am an inpatient, and I want them to know if it means they can better address my needs.

On the other end of the spectrum, I once bumped into a medical assistant from my endocrinologist’s office at a bar. She introduced me to her friends as her patient, asked me if my new dose of medication (which she named) was working, and told them I was a difficult stick for blood draws. (She wasn’t sober, can you tell?) I was not impressed. At all. Obviously this is an egregious example way outside the bounds of the classroom conversation, but yet it’s still part of the conversation.

I know that my colleagues and I face similar boundaries in sharing student information. It’s one thing to describe a classroom situation and seek advice or bounce around ideas about how to handle it, or to very generally describe someone’s extenuating circumstances when in committee meetings to discuss failing grades. It’s another thing altogether to reveal any specific, personal information that has been shared with us, and we need to make the same kinds of distinctions between what will help us best help our students and what should always remain confidential.

I think in any profession where you establish relationships with people, where trust and respect develops and you begin to really care about people, you’re going to confront these issues. If you didn’t care, the details wouldn’t matter.

But knowing that doesn’t make it any easier in the moment, does it?

Facebook Twitter Email