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

Patient Perspectives

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  • Donna Cryer's blog, DCPatient, voices her experiences as a 'professional' patient.'  In "Patient ID", she questions why she sometimes feels the "need to escape or hide from the fact that [she lives] with chronic and sometimes acute health conditions.''  She recalls three recent experiences where she was confronted with her own patient identity and her reaction to each.'  She says, "Wearing my patient identification publicly consistently may take more courage than the daily private struggle of living with my conditions."

  • Amy Tenderich from Diabetes Mine discusses the difference between the irksome terms "compliance" and it's suspiciously similar cousin "adherence" and what these terms mean to her.'  She points to three examples of big chain pharmacies that have recently launched 'adherence' programs specifically for diabetes and questions their motives and assumptions.'  Her experiences with "complying" and "adhering" remind us how difficult it can be to manage multiple, chronic symptoms: "eat right, exercise X hours per week, get your lab tests often, and test your sugar over and over in a perfect daily drumbeat of diabetes management."' 

  • RA Warrior Kelly Young says, "The goal with RA is not perfection: don't give up the things you love!" ' Her guest blogger, Carolyn, loves to sew - an activity that is particularly difficult for people with RA who suffer greatly from joint pain.'  In Carolyn's blog "Deciding That Slow Is Fast Enough With RA," she shares her tips for sewing: threading a needle, ironing, cutting fabric, and keeping layers of fabric together evenly.' '  Carolyn says: "It might take a little longer.'  It might not be easy'. [but] keep living a good life.'

  • Paula Span, author of 'When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions,' writes on the New York Times' New Old Age blog about "Caregiving Without Siblings."'  She recounts the story of Regina Milgram-Bossong ' an only child ' and her aging parents with the "usual run of late-life health problems".'  Regina is troubled about the prospect of caring for her parents without a brother or sister to help.'  But Margaret Reiss, who has a brother and a sister, tells how siblings don't always make matters easier.

  • Leukemia survivor Andrew Schorr blogs about his recent trip to Phoenix where Greg Stephens, who lost his mother to chronic myelogenous leukemia (CML), has founded a new advocacy organization, The National CML Society.'  Frustrated by what CML sufferers have felt was a lack of attention from the well-known Leukemia and Lymphoma Society, they started their own advocacy group.'  Andrew says, "If the traditional advocacy group doesn't meet your needs, start your own. If your doctor doesn't pay attention to your side effects, get a new one. If there's early research that you could one day go off expensive meds, push for more research to answer the question."


By Goldie Pyka

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