Another Innovator! Kate Rocks!

kate millikenI love it when I find innovators and it’s my pleasure to introduce you another one, Kate Milliken. I never actually met Kate, but I saw her project on the crowdfunding platform Indiegogo and sought her out for this blog.

For those who don’t know, crowdfunding is an opportunity to contribute relatively small amounts of money to creative, energetic, (more…)

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The Day I Made Peace with an Errant Organ

c Here’s my theory: few health crises in life are as traumatic as surviving a cardiac event. I developed this theory while I was busy having my own heart attack in the spring of 2008.

For starters, heart attack symptoms often come out of the blue (in fact, almost two-thirds of women who die of coronary heart disease have no previous symptoms. Having a heart attack can feel so unimaginably terrifying that almost all of us try desperately to dismiss or deny cardiac symptoms. And according to a 2013 report published in Global Heart, the journal of the World Heart Federation, women are twice as likely to die within one year even if they do survive a heart attack compared to our male counterparts.

So if – and each of these is still, sadly, a great big fat IF for too many women – we survive the actual cardiac event, and if we are near a hospital that’s able to provide an experienced team of cardiologists/cardiovascular surgeons/cardiac nurses, and if we are correctly diagnosed, and if we receive timely and appropriate treatment, and if the resulting damage to our oxygen-deprived heart muscle is not too severe, we get to finally go home, safe and sound.

And that’s where the real trauma starts.   (more…)

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In Observance of Jessie Gruman

jessie-gruman picOn July 14th, 2014 we lost a truly outstanding woman to her battle with a long time illness. Jessie Gruman was the president and founder of the Center for Advancing Health. A true patient advocate, she promoted not only patient engagement but the use of evidence-based medicine to support the adoption of healthy behavior.  In addition to her professional career, Gruman defined herself as a musician, avid reader of poetry and interested in foreign policy, the media and global health. She was a true disruptive (more…)

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Who Will Take Care of You at Home if You’re Seriously Ill?

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be truer than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes seriously ill. (more…)

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An Interview with a Disruptive Woman: Exploring Chronic Pain Management

Janice Lynch Schuster is no stranger to being disruptive. A writer, mom, and patient, she has explored many topics from breast cancer to caregiving on our blog . Today, she shares with us a glimpse inside her recently published  Health Affairs article “Down The Rabbit Hole: A Chronic Pain Sufferer Navigates The Maze Of Opioid Use,” a personal story about how she manages chronic pain.

Tell us a bit about the article.

The undertreatment of chronic pain is an ongoing challenge for patients and clinicians—made more challenging by a prescription painkiller epidemic that has triggered  heightened barriers to opiod access. Clinicians and (more…)

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The Power of Patients and Systems Evolving Together

Amy CaronWhen I’m asked why I left a sought after career in the fashion industry to get a master’s in public health I have an easy reply, I was a health care ‘consumer’ and I was mad. I was reminded about my experience recently when I read new guidance on immunosuppressant therapy in lupus patients that are in remission. Years ago when I found my perfect balance of diet, rest, exercise, and alternative care I had a long period of remission that prompted me to ask my rheumatologist if we could taper the azathioprine. The response was, “Look, take (more…)

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From Surviving to Thriving

Wrenn_Headshot (2)Raising mental health awareness typically involves selection of an illness of interest and summarizing a set of staggering and sobering statistics for the purpose of mobilizing corrective action. Depression, schizophrenia, bipolar disorder, and substance abuse top a long list of debilitating psychological and psychiatric conditions that deserve recognition and attention. Treatments for these conditions are diverse and may involve the use of medications, talking therapies, medical procedures, and self-management strategies. The reality is that there are individual and system-level impediments to recovery and health. Many people simply survive their illness, most are focused on elimination of symptoms, and it is easy to lose hope. (more…)

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Are We Cowboys or Managers of Our Chronic Conditions?

jessie-gruman picThe idea that I should “manage” my chronic disease has always struck me as optimistic daffiness on the part of those who want me to do this. The word “management” raises images of organizational charts and neat project timelines: diagrams of authority, deference and – dare I say it – compliance by that which is being managed.

This bears no relationship to my experience of trying to live a full, rich life with serious chronic disease, and I have heard the same from many of those I’ve interviewed. My image of having a serious chronic disease is of a cowboy riding a rodeo bull. Take a look. You call that management? No. But it gives you a pretty good idea of what it feels like to have a serious chronic disease. Most of us are just trying not to fall off the damn bull. (more…)

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Here’s My Battle…What’s Yours?

“Be kind, for everyone you meet is fighting a hard battle.” -Plato