Until my physical ailments began worsening rapidly in my late 40s, I was a high achiever, proud of my "kick ass" attitude, thinking I was so competent I could surmount any challenge life threw at me. Life appeared to be straightforward, and I didn't understand why this didn't seem to be the case for so many other less fortunate folks. Though I worked hard for my accomplishments and sometimes struggled, there ...

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“Get well soon!” That’s a common saying. All of us have heard it. But what if you have an illness that you won’t ever get better from? The most horrible part of having a chronic illness is that it’s forever, or for a very long time. Unless your personal miracle comes, your illness will always be with you. There isn’t an end in sight. There’s just adjusting to the pain, the tiredness, ...

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I have been a rehabilitation specialist and case manager working with patients who have neurological and neuropsychiatric impairments for thirty years. About three years ago, my life took an unanticipated detour when I was perforated during a baseline colonoscopy. All of my experience as a case manger and patient advocate could not prevent this error or the others that followed. Although my health, body, and life were forever altered by the ...

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During the first few days that my mother spent in hospice, I silently sat by her bed watching her chest rise and fall, listening to her moan, counting her doses of Ativan, Tylenol, and Morphine, and tallying the days she’d been without food and water. On day five of my vigil, I asked her nurse, “How long can Mom live like this? She hasn’t opened her eyes or eaten or had ...

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After more than fifteen years of being mostly housebound by chronic illness (which includes chronic pain), here are a few of the dilemmas I’ve faced over and over. I’m confident that I’m not alone in my “should I/shouldn’t I?” world. Do I accept an invitation from a friend to get together or do I refuse it? If I refuse the invitation, depending on who issued it, it may be the last one ...

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I accompanied my husband to an office visit with his orthopedic surgeon. Jamie had been experiencing setbacks in his recovery from major surgery. I went with him because I understand how hard it can be to distill medical information on the spot, much less remember it. Documenting what the surgeon said would allow us both to reference it later. The more information Jamie had about his condition, the more of ...

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Many of us now have high-deductible health insurance plans, which makes us “cash-pay” patients until we meet our deductibles. According to a Health Affairs health policy brief, high deductible plans are now much more prevalent in both individual and group markets. The higher the deductible, the lower the monthly premium. If you have a high deductible plan and don’t consume much medical care, you are most likely a cash pay ...

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When my friend Madeline turned seventy, she celebrated in a big way: She walked a half-marathon; she hosted a cabaret for family and friends at which she sang and told stories; she traveled to China. Now, six years later, this dynamic woman has become a virtual prisoner in her apartment. She has undergone back surgery, suffered a nearly fatal intestinal infection and, after a fall, had bolts and screws placed ...

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I grew up thinking an “illness” was either a fever or croup. Illness was a stuffy nose -- a sick day, an excuse to miss a day of school. At 18 years old, “illness” took on an entirely different meaning. Illness meant waking up from a coma, learning that my stomach exploded, I had no digestive system, and I was to be stabilized with IV nutrition until surgeons could figure ...

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“Hey, doc, you’re killing me.” Or, more specifically, us. A recent report from researchers at the Johns Hopkins University School of Medicine points to medical errors as the third leading cause of death in this country. Despite the many safeguards put in place by the government, hospitals, and doctors, themselves, more than 250,000 people a year in the U.S. die from hospital-acquired infections, wrong-site surgeries, medication mistakes and a host of ...

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