Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Patient Perspectives: Spoon Theory, Gift Ideas, and Stockpiling Meds

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Ever wondered what it's like to live with a chronic illness? Christine Miserandino, while in a diner with a friend, used a handful of spoons to describe her life with lupus.  e-Patient Dave said, "In 5 minutes [Christine] forever changed my own awareness of my wife's arthritis and bone pain 2,100 words; worth every second."  Read The Spoon Theory, here.

And what to get for those people on your Christmas list who have a chronic illness?  For those with diabetes, Amy Tenderich has some great, non-food ideas. And that doesn't mean they aren't still fun!'  First and foremost?  "Stop guessing and find out what someone with a health condition really wants and needs," says Amy.

What most chronic disease patients need all year long is prescription medicine or medicines.  In case of an emergency, they are told to have a one-month supply of our medicines on-hand.  But how exactly is one supposed to acquire 30 days worth of extra meds when a.) Most insurance plans won't pay for early fills and b.) Prescriptions allow a specific number of refills?'  WarmSocks has "jerry-rigged a solution".

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Sarah Jorgenson says
December 22, 2010 at 11:21 AM

Dr. Rob Lamberts on Musings of a Distractible Mind posted in July, A Letter to Patients With Chronic Disease, providing a doctorâ??s perspective on caring for patients with chronic disease.

He recognizes that â??you have it very hard, much harder than most people understandâ?? and â??you also possess something that is usually in our domain: knowledge.â?? Dr. Rob continues, â??Even doctors who specialize in your disorder donâ??t share the kind of knowledge you can only get through living with disease.â??

See what he and 253 people had to say about his post and the advice that Dr. Rob offers to those with chronic disease for how to work with clinicians.

http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/