personal health

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Midnight Friends: How Wired Patients Are Transforming Chronic Illness

(mic_000/Flickr)

(mic_000/Flickr)

By Nell Lake
Guest contributor

Over the years, I’ve watched my cousin Deborah Haber struggle with several chronic, painful medical conditions, including fibromyalgia and a rare incurable disorder called Ehlers-Danlos Syndrome, a connective tissue disease that causes profuse sweating, a high heart rate and insomnia, among its many symptoms.

Largely housebound, and managing the life of her 11-year-old daughter, Deborah faces social isolation and persistent pain.

But along the way, my cousin has discovered a lifeline that’s lifted her outlook and improved her health. It combines the best qualities of a mother, best friend, therapist and trusted doctor to help her cope: it’s social media.

Deborah, 39, used to lie awake at night with “agonizing, shooting nerve pain,” feeling helpless and alone. She began going online, where she found others who were also awake and in pain; they became her midnight friends. “When you cannot sleep,” she says, “and you know your kid’s going to be up in a couple of hours, and you’re going to have to get her to school on time,” even if you’re exhausted — “knowing that you are not alone is a life-saver.”

With a rare and painful chronic condition, Deborah Haber found a lifeline: social media (Courtesy)

With a rare and painful chronic condition, Deborah Haber found a lifeline: social media (Courtesy)

Early on in her social media journey, Deborah mostly used Twitter. It was through people she met there that she learned about Ehlers-Danlos syndrome. She talked with her doctor, who did her own research and sent Haber to a specialist, who diagnosed the rare congenital disease. Deborah’s online activity, then, led directly to the diagnosis, which led to “far better care.”

Clearly, Deborah’s not alone: she’s part of a large and growing group of people with chronic illness in the U.S. who are using the Internet and other online technology to take charge of and improve their own health. This goes far beyond Googling your child’s weird rash: these millions of “empowered patients” are joining social-media communities, consulting online health databases, learning and sharing knowledge about drug side effects, crowdsourcing research studies, electronically monitoring their health and becoming health care activists who share what they’ve learned with their doctors.

Online patients with chronic illness use social media to improve both mental and physical health and to better connect with an understanding community, says Jennifer Covich Bordenick, chief executive officer of eHealth Initiative, which published a study earlier this year on patients’ social media patterns.

“It’s really incredible, if you look at what social media is allowing patients…to do right now,” she says. “It’s providing tremendous access to support, information, and it’s connecting people in a way that they haven’t been able to do before. … People with chronic illness are more motivated. … There’s an urgency there.” Continue reading

Project Louise: Learning To Run A Marathon Instead Of A Sprint

No, Louise isn't running an actual marathon -- not yet, anyway. But she is learning to plan for the long haul. (Chris Brown via Wikimedia Commons)

No, Louise isn’t running an actual marathon — not yet, anyway. But she is learning to plan for the long haul. (Chris Brown via Wikimedia Commons)

By Louise Kennedy
Guest contributor

I’ve been meeting with Coach Allison every two weeks to review my progress, set new goals and generally figure out how Project Louise is going. When we talked on Friday, she pointed out that my posts here have tended to look back on a given week and discuss what went right … or wrong. All well and good, she said, but what about exploring the process of looking ahead, breaking my big goal (health!) down into smaller intermediate goals and finding ways to keep moving in the right direction?

This was yet another moment when I realized how lucky I am to have support in this project – from Allison, from Trainer Rick, from Dr. “DASH” Moore and of course from the Naughty Moms.

Specifically, Allison’s expertise in strategic planning and project management brings a perspective that I don’t often have. I have spent my adult life working on daily, or at most weekly, deadlines: You have a task, you get it done, you move on to the next deadline. I’m good at it, I know how to do it, and I keep doing it over and over again.hamsterwheel

But a project that will take a whole year to complete? (And, really, if I do it right, it’s a project I’ll be working on for the rest of my life.) Who can plan that far ahead?

Well, it turns out, Allison can. And, thanks to her, I’m beginning to see how I can do it too.
The concept of setting intermediate goals is one of the most helpful for me so far. Those of you who are less challenged in this area may be amused to know that, until Allison pointed it out, I hadn’t realized that my overall weight-loss goal – lose 44 pounds by Dec. 31 – breaks down rather neatly into quarterly goals. Yes, that’s right, lose 11 pounds every three months and I’ll get there. (As a reward for figuring this out, I may buy myself a new T-shirt for the gym. It says: “I’m an English major. You do the math.”)SENGLISH_375_1

Sooo … we decided that I should do a six-month assessment at the end of June, assessing my progress not just in losing weight, but in eating more healthfully, exercising more regularly, taking care of myself spiritually and emotionally and generally living a better life. And before that, at the end of March, we’ll take a look at how I’ve done for the first quarter of the year.

This felt so obvious once she laid it out. But it hadn’t been obvious, at least not to me. And Trainer Rick says that I’m not alone in this.

“People set really unrealistic goals,” he told me in a recent session. Continue reading

‘Gold-Standard’ Study: Water Does Help Weight Loss

Greg Riegler via Flickr

Water seems to help weight loss

It’s virtually free! It has no health downside unless you drink gallons of it! It really does help you lose weight!

Some encouraging news out of the American Chemical Society convention now under way in Boston: A “gold-standard” clinical trial — randomized and controlled so that some dieters drank water and some didn’t — confirmed the old wisdom that drinking more water aids weight loss. Other research had recently called into question the maxim that we should drink eight glasses of water a day.

From the American Chemical Society’s report: Continue reading