Remember in second grade when you realized that you could say the word "giraffe" 25 times and it would lose its meaning, shed the image of that gawky creature and turn into a little pile of meaningless sound? You know, when you had your first insight into the wonders of language? I was reminded of this experience when, at a conference about patient engagement in health care, the word "dignity" was ...

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Remember the mothers of sick children "Motherhood is the hardest job you’ll ever love." I’m not sure who first coined that phrase, but its truth becomes clearer to me everyday. And nowhere is that truth more evident than in mothers of children with a serious illness. Throughout my years of working at this hospital, I’ve had the privilege of knowing dozens of moms who find themselves within these walls fighting ...

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My family’s world changed instantly upon receiving Annie’s diagnosis of apraxia and autism spectrum disorder (ASD) a day before her second birthday. Hearing three words, "she has autism," we suddenly faced a lifetime of uncertainty. I knew that I had to embrace my role as a mother of a child with autism, and as an autism champion -- and more critically, find a physician that I could form a trusted ...

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As health care providers are tasked with more administrative duties such as documentation, coding, and billing, the goal to minimize health care costs will continue to be extremely challenging. In my role, I work with physicians on these challenges daily to ensure not only do the physicians get paid accurately but patients understand their benefits when they see our physicians.  Currently, I am the revenue cycle manager for the department of ...

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My husband suffered with hip and low back pain for about four months. It started right about the same time he was prescribed a new blood pressure medication. He didn’t think much of the pain at first because he was recovering from a groin injury, the result of a close encounter with a hockey puck while playing the game. But the pain grew in intensity over the following weeks. He’s a ...

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I loved my father. His doctor was fond of him, too. Three times we nearly lost him, and each time he pulled through, weaker, but enjoying life.  When the magical recovery didn’t materialize, it was hard to believe that this was really going to be the end -- hard for my family, and maybe harder for his doctor. No one wanted time with my dad more than I did. I wanted ...

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From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances. 1. Young people are treated as if their health issues can’t possibly be chronic. I confess that before I ...

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I heard this on the radio recently: Mom takes her new baby to the emergency department on a weekend because she thinks her daughter might have a urinary tract infection. She's right, but regulations say the baby has to stay in the hospital for two days to ensure the infection clears. Afterwards, the mom is surprised by and concerned about a $7,000 hospital bill for the baby's care. The reporter says ...

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It was only a matter of time before the name Dr. Stanislaw Burzynski would grab the attention of the family of McKenzie Lowe, a 12-year-old from Hudson, N.H., with that most damning of diagnoses, a diffuse intrinsic pontine glioma,  an inoperable brain tumor with a median survival of less than a year. Like McKenzie, my own daughter was 12-years-old with a recurring brain tumor that had started to metastasize and ...

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I’m not a doctor.  And sure, you know your patients better than I do. But, I have been a patient and as a patient, I know how we think. As someone who works in health IT helping to create software to better connect patients and providers, I like to think I have a hypersensitive pulse on what’s going on. I know that as patients, sometimes we get frustrated trying to solve ...

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