My Heart Breaks for Your Child

Autistic HoyaTrigger warning: Brief homophobic/heterosexist quote, and extensive quotes and descriptions of ableist and eugenicist rhetoric.


“I don’t want a handicapped child.”

I read that line in a mother’s story of her disabled child’s birth and first few weeks, and it gave me that awful, wrenching feeling–you know, the one where your insides kind of shrivel up and your breath catches somewhere in the back of your throat, hinging on tears or gasps or other sounds of enervated shock. (more…)

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Has Patient-Centered Health Care Run Amok?

Trudy-Lieberman -- biggerBeginning with the Institute of Medicine’s (IOM) landmark Quality Chasm report in the late 1990s, the health policy establishment, the medical profession and the American public began to hear a new and disconcerting message: American health care was not patient-centered.

The IOM prescribed a number of recommendations to redesign health care delivery, one calling for patients as the source of control over their care. “Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them,” the IOM recommended, noting that patients should have access to their medical (more…)

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Rewind, Play, and Pause: My Weight Loss Journey

Photo: I put in some work this here evening.  2 mile jog followed by 15 minutes of a cardio circuit with resistance bands focusing on back and triceps. No breaks in between sets. And a 10 minute cool down walk. Even my arms were sweating tonight! She is gets it in!! #workingout #healthy #healthyliving #fitness #strong #strengthtraining #jog #walk #beats #nike #fuelband #teamhealthy #itsalifestyle #teamgetlean #fattofit #biggirlscanruntoo #100lbclubRewind: July 2, 2011

I had the pleasure of being the Maid of Honor at my sister’s wedding. It was a beautiful day all around. Well, aside from the fact that my knees hurt and my back (the lower region of the back) was on fire the whole night from standing and walking around. But, despite the pain, you couldn’t tell me that I wasn’t cute in my custom dress and professional makeup! After the wedding, I checked some of the pictures that my cousins posted on Facebook. I was speechless! There was no way that the chick in that picture with the quadruple chin and back fat was me! It was simply no way that she, a high school and collegiate athlete looked like that. It was that day that reality hit. I was not just a big girl anymore, I WAS FAT!! (more…)

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Delete Blood Cancer: What You May Not Know About Bone Marrow Donation

Terri Prof Headshot 0412We all know about blood drives and the importance of blood and platelet donations to save lives. And millions of people are registered organ donors (usually when they get their driver’s license). But did you know that there is another renewable, life-saving resource you could give?  It’s your blood stem cells/bone marrow. Only 11 million Americans are registered with the National Marrow Donor Program to help save lives if their blood stem cells match a person fighting any one of 70 blood cancers and diseases. (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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Patient Engagement: Here to Stay

jessie-gruman picA few years after my treatment for Hodgkin’s lymphoma finally limped to its end in the mid-1970s, I looked back and was amazed at my casual approach to that devastating, life-changing diagnosis: At times I had been completely absorbed by it, every moment governed by the demands of the treatment and illness. At other times, well, the contingencies of life intervened, and I went dancing. Or to class. Or on vacation, with little regard for the risks, the medications and all my doctors’ directives.

How could this be? Why would I take such a chance with my own health, my own (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 Butter Question