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WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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Katherine Fielder
Paragould, AR


I am a 48 year-old woman with a right hip disarticulation due to chronic osteomylitis and chronic pain. I am also a Registered Nurse with many years of experience and a Social Worker but I am only identified as that woman in a wheel chair. The most frustrating aspect of dealing with the Medicare and SSD system is their lack of foresight and preventive care. Instead of keeping me at my most healthly, active, and mobile, the system demands that someone with a disability become more disabled or hurt before they will get any more assistance, equipment, or education. Most rehabilitation programs are designed for the acute phase of your condition, after that, you are on your own. You must fight on multiple fronts -- for public access; your local (state) rehabilitation agency (who may be rewarded if very little funds are dispersed); the attitude most government employees have of your worthlessness; your vulnerability when it comes to dealing with DME companies; the lack of knowledge, education,and just plain ignorance about chronic illness or disability; the attitudes of your physicians, your famlies, and anyone else you encounter in your daily life, who only see the chair.

Since you already have someone who has commented on chronic pain, I will not. Society expects a person who has a disability/chronic illness to be a saint. As a disabled woman, I should not demand my rights, or be my own advocate, if I do, I am labeled as demanding or impossible to please. I want to thank the producers for this show. I wish someone would do an expose on the cost of DME equipment I just can't believe it costs so much.

YOUR STORIES
Zoe Albright, Stroke
Betty Bennett, Kidney Disease
Roxanne Bedford-Curbow, Seizures
Valerie Brekke, Fibromyalgia
Lily Casura, Chronic Fatigue
Billie Davis, Peripheral Neuropathy
Penny Day, Chronic Obstructive Pulmonary Disease
Julia DeJesus, Seizure Disorder
MS Patient, Fairfax, VA
Charisse Farmer, Hydrocephalus
Katherine Fielder, Chronic Pain
Zoe Francis, Juvenile Diabetes
James Hines, Hemochromatosis
William Holford, Emphysema
Nancy K, Chronic Fatigue Syndrome
Patricia Lawson, Natural Rubber Latex Allergy
James Locke, Crohn's Disease
Gary Maslow, various
Kathy Matthews, Parkinson's
Andrea Meyer, MS
Gina Owens, Chronic Fatigue Immune Dysfunction Syndrome
Alicia Salas, Chronic Pain
Allison Scott, Chronic Pain
Deborah Serrano, Stroke
Becky Shively, Phenylketonuria
Jennifer Smallin, Type I Diabetes
Joanna Southerland, Diabetes
Alina Valdes, Cystic Fibrosis
Elizabeth Wertz, Seizures

WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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