So I’m jumping into the political fray courtesy of an interesting press call today but while that post is percolating, here are a couple links hot off the presses.
Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!
Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week–check out the multitude of heavy-hitting posts.
Amy Tenderich of DiabetesMine.com has posted the first official review of Life Disrupted. Check it out here.
While you’re clicking away, be sure to read this week’s Grand Rounds, hosted by Dr. Val Jones at Revolution Health. As always, it’s a compilation of the best medical writing out there, and this week’s entries are certainly compelling!
Stay tuned for a scintillating look at the incidental economics of illness…
It’s pre-pub time, when advance reader quotes and reviews for Life Disrupted start coming in and all of the sudden, the book that lived in my head and then in my laptop all these months is starting to feel real. To that end, the advance quotes that appear on and in the book are now available right here, so check them out!
I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!
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In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!
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In keeping with the writing theme, check out this week’s Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.
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.
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!
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!
Increased time spent with my trusty nebulizer plus increased deadlines with a dash of extended family functions=what?
You guessed it, even more time with nebulizers, chest PT, and new meds. Oh, and it partially explains the lack of posts the past week or so, despite the ideas teeming around in my cluttered head.
However, I do have some links to quality reading to share. First off, it’s the end of the month, which means the monthly Pain-Blog carnival is up at How to Cope with Pain. The best posts of each month are featured, and new bloggers are always welcome to contribute.
Also, I’ve written before about patient authority and the right to say “No” to procedures. (I’ve also left the hospital against medical advice before, but that’s a whole other story, and turns out I was totally right to do so.) Most times, though, I do what I’m told even if I don’t like it–because let’s be serious, is there usually a lot of appeal to invasive or otherwise uncomfortable medical procedures?–if it’s something my doctors and I feel will best give us the information we need to improve my health. Anyway, I mention all this because I came across an interesting Explainer piece on Slate.com about patients’ rights and consenting to medical procedures. Check it out if you have a minute.
Before I get into anything else, let me make the following premise: In no way am I comparing a measly two weeks with a swollen jaw and a liquid/pureed diet to a potentially terminal cancer, removal of one-third of the jaw, and a lifetime of pain and reconstructive surgery.
That story belongs to the late acclaimed poet and writer Lucy Grealy, and it is found in her remarkably candid memoir, Autobiography of a Face. I first read this for a nonfiction book workshop in my MFA program and of all the books I read for the course, this is one of the ones I could never forget.
Grealy writes about truth, sickness, suffering, beauty, perfection, and loneliness. The facial disfigurement she experienced after her tumor was removed and the endless rounds of hospitalizations, surgeries, and unmet expectations that followed are not rendered in strokes of sentimentality or self-pity. As a narrator, Grealy is at once irascible and inspiring, frustrating and courageous, determined yet jaded. She doesn’t hide her flaws, both the physical as well as the emotional.
I’ll be honest, some aspects of the book irritated me—why, for example, does her twin sister only come up once or twice in the whole story?—but even beyond the dramatic events and the soul-churning upheavals, the writing itself is beautiful and lyrical.
I was reminded of this book at several points during the last few weeks. For Lucy, opening her mouth wide was an excruciating ordeal, one made even more awful given how much dental and reconstructive work she needed. Eating was a daily exercise in futility; not only was it hard to open her mouth, but she lost many teeth to her various surgeries and complications. These things paled in comparison with the taunts of her schoolmates and the devastating impact looking different had on her psyche, but they had an impact nonetheless. Simple things like swallowing, chewing, laughing or yawning should not have to be conscious things.
Again, clearly two weeks of chicken broth and liquid food does not give me any rights to claim kinship or understanding. I know that. But if nothing else, recent events have rekindled my respect for a writer who died too young, whose words contain grace and eloquence even when they are baring unflattering truths, and whose perception is unsettling:
“I used to think truth was eternal, that once I knew, once I saw, it would be with me forever, a constant by which everything else could be measured. I know now that this isn’t so, that most truths are inherently unretainable, that we have to work hard all our lives to remember the most basic things. Society is no help. It tells us again and again that we can most be ourselves by acting and looking like someone else, only to leave our original faces behind to turn into ghosts that will inevitably resent and haunt us…It suddenly occurred to me that it is no mistake when sometimes in films and literature the dead know they are dead only after being offered that most irrefutable proof: they can no longer see themselves in the mirror,” (222).
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Since we’re on the subject of pain (excuse the transparent segue here), How to Cope with Pain is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month’s best posts. New bloggers are always welcome to contribute. Check out November’s edition here. You may just recognize someone here and there…