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Peggy Girshman is the executive editor of Kaiser Health News, a nonprofit news service that is a major new player in health journalism, widely valued for its reporting on health care policy and politics. These days, she's also a patient, being treated for amyloidosis, which she describes below as "a rare, weird disease related to blood cancers."
Though she has covered health care for more than 25 years, Peggy says, she has never before been moved to poetry. But here, she shares a late-night inspiration: A poem composed entirely of instructions from her pill bottles.
May Cause Confusion
Follow the instructions very closely
Take before first food. Stay fully upright
Smoking should be avoided
Take this medication by mouth with or without food
Drink plenty of fluids, unless your doctor directs you otherwise
Do not split, crush or chew the medication. Doing so may destroy the drug
Take by mouth at least 1 hour before or 2 hours after a meal
If the tablet falls out before using, throw it away
Avoid exposure to sunlight
Take with full glass of water
Take with food or after a meal
Take on an empty stomach
Must agree to use 2 different forms of effective birth control at the same time
This product may contain inactive ingredients, which may cause allergies
A total of 50% of patients experienced serious adverse events (SAEs)
Constipation, diarrhea, gas or nausea may occur
Avoid contact with people who have contagious diseases
Blurred vision, change in sexual interest/ability
Dizziness may occur
Nausea may occur
Diarrhea may occur
Loss of coordination
Fast or slow heart rate
Swelling in your hands and feet
Tell your doctor right away if you have low magnesium blood level
This medication may cause withdrawal reactions
Dizziness, drowsiness, feeling "high"
Muscle weakness, mental/mood changes, blood in the urine, change in the amount of urine
Painful or swollen tongue
This medicine may cause abnormal drug-seeking behavior
More background from Peggy:
"'May Cause Confusion' was written during one of my insomniac nights (insomnia being a side effect of at least four of the things I'm taking, as I discovered at 3 a.m. one night when I went searching through those long, tiny-type explanations stapled to the prescription receipt)."
"I'm being treated for amyloidosis, a rare, weird disease related to blood cancers, such as multiple myeloma. Here's the topline explanation from the Mayo Clinic website (where I shlep to for treatment): 'Amyloidosis (am-uh-loi-DO-sis) is a disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ.' Bascially, it gums up the works and can turn your heart and/or kidneys and/or liver to concrete. Despite the 'amyloid' terminology, this isn't associated with Alzheimer's Disease."
"So I get a chemo injection two weeks out of every three. And then the pill regimen kicks in. While many days are the same, they are not all. For example, on Wednesday nights, I take five steroid pills ('take with food') which is the chief insomnia culprit. So I also try to take a sleeping pill at the same time ('take on an empty stomach'). One pill, Revlimid - a modern version of Thalidomide - I take 14 out of every 21 days. I had a stem cell transplant this summer, and since I only had a partial response, I'm stuck with this course of treatment for at least 18 weeks. I'm almost half-way!"
Peggy, if you need more late-night distraction, I think many of us would love to read how your personal experience is affecting your mile-high view of the health care system. On the other hand, poetry is surely more fun...
Readers, responses to the poem? Have you got any lines from your own pill bottles to add? And please, could somebody set it to music? I'm imagining a song with a dark, absurdist beat that could be the ultimate antidote to cheery TV ads for medications.
[A couple of notes on affiliations: Kaiser Health News is an editorially-independent program of the Kaiser Family Foundation, and not affiliated with Kaiser Permanente. WBUR and NPR partner with Kaiser Health News to cover health policy.]
This program aired on February 13, 2013. The audio for this program is not available.
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