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Experiences, experiments, reflection, action

By April 17, 2016December 6th, 2023Advocate, Caregiver, Consumer, ePatient, Leader, Researcher, Written Only
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This week people told me stories about a moment in their health journey – Symptoms, people, relationships, procedures, thresholds, feelings.  Completely fascinating, inspiring, and gut wrenching windows into life’s challenges and tragedies. I heard,  I’m worried, the surgery worked, I can’t find a clinician who listens to me, my condition recurred – worse, my family’s supportive and grieving, how will I manage my job, I fell, my mother went into assisted living  (all from different people). Other people told me about work they’re doing – research, businesses, experiments.  I heard, let me tell you about the study I’ve been doing about multiple sclerosis, I’ve learned a lot about the stages that a person goes through as they gather information about chronic illness, I’m helping people succeed in their startup, I’ve found 5 people who have had the same success managing their chronic fatigue.  I read studies this week about reducing opioid use,  predicting resource use in chronic illness,  and improving the ability of individuals and clinicians to communicate and set mutual health goals.

Actually, this is a normal week. Experiences, experiments, reflection, action. All tie together. Each necessary, none sufficient.

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