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Author: Laurie Edwards
Publisher: Bloomsbury Publishing USA
ISBN: 0802779735
Category : Family & Relationships
Languages : en
Pages : 288
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Book Description
Twenty-seven-year-old Laurie Edwards is one of 125 million Americans who have a chronic illness, in her case a rare genetic respiratory disease. Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived-they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness. Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals. Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.
Author: Laurie Edwards
Publisher: Bloomsbury Publishing USA
ISBN: 0802779735
Category : Family & Relationships
Languages : en
Pages : 288
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Book Description
Twenty-seven-year-old Laurie Edwards is one of 125 million Americans who have a chronic illness, in her case a rare genetic respiratory disease. Because of medical advances in the treatment of serious childhood diseases, 600,000 chronically ill teens enter adulthood every year who decades ago would not have survived-they and people diagnosed in adulthood face the same challenges of college, career, and starting a family as others in their twenties and thirties, but with the added circumstance of having chronic illness. Life Disrupted is a personal and unflinching guide to living well with a chronic illness: managing your own health care without letting it take over your life, dealing with difficult doctors and frequent hospitalizations, having a productive and satisfying career that accommodates your health needs, and nurturing friendships and a loving, committed relationship regardless of recurring health problems. Laurie Edwards also addresses the particular needs of people who have more than one chronic illness or who are among the twenty-five million Americans with a rare disorder. She shares her own story and the experiences of others with chronic illness, as well as advice from life coaches, employment specialists, and health professionals. Reading Life Disrupted is like having a best friend and mentor who truly does know what you're going through.
Author: Mary Kalfoss
Publisher: Cambridge Scholars Publishing
ISBN: 1527520374
Category : Psychology
Languages : en
Pages : 227
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Book Description
This book describes what it is like to embody chaos and liminality in living with a physical chronic illness and how these experiences are related to the loss and remaking of one’s sense of self. It also encourages readers to listen closely to the figurative language people use in trying to articulate the unspeakable. Focusing upon a wide array of narrative fragments gathered from first-person literary work and research, the author portrays how a conglomerate of sensations, feelings, and thoughts are embodied in the illness experience. The voices present in this text speak of vulnerability, suffering, and brokenness, yet also, endurance and fortitude. The ethics of philosopher Emmanuel Levinas provide the grounds for offering care lovingly. This book makes a significant contribution to helping students, practitioners and carers understand the chaos that is inherent, yet so often silenced, in the illness experience. This text could also be of interest to laypeople who are curious about how subjective illness is experienced, and to those who are ill who may be seeking affirmation for what they are experiencing.
Author: Tessa Miller
Publisher: Henry Holt and Company
ISBN: 1250751462
Category : Biography & Autobiography
Languages : en
Pages : 240
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Book Description
"Should be read by anyone with a body. . . . Relentlessly researched and undeniably smart." —The New York Times Named one of BuzzFeed's "Best Books of 2021" What Doesn't Kill You is the riveting account of a young journalist’s awakening to chronic illness, weaving together personal story and reporting to shed light on living with an ailment forever. Tessa Miller was an ambitious twentysomething writer in New York City when, on a random fall day, her stomach began to seize up. At first, she toughed it out through searing pain, taking sick days from work, unable to leave the bathroom or her bed. But when it became undeniable that something was seriously wrong, Miller gave in to family pressure and went to the hospital—beginning a years-long nightmare of procedures, misdiagnoses, and life-threatening infections. Once she was finally correctly diagnosed with Crohn’s disease, Miller faced another battle: accepting that she will never get better. Today, an astonishing three in five adults in the United States suffer from a chronic disease—a percentage expected to rise post-Covid. Whether the illness is arthritis, asthma, Crohn's, diabetes, endometriosis, multiple sclerosis, ulcerative colitis, or any other incurable illness, and whether the sufferer is a colleague, a loved one, or you, these diseases have an impact on just about every one of us. Yet there remains an air of shame and isolation about the topic of chronic sickness. Millions must endure these disorders not only physically but also emotionally, balancing the stress of relationships and work amid the ever-present threat of health complications. Miller segues seamlessly from her dramatic personal experiences into a frank look at the cultural realities (medical, occupational, social) inherent in receiving a lifetime diagnosis. She offers hard-earned wisdom, solidarity, and an ultimately surprising promise of joy for those trying to make sense of it all.
Author: Li Zhenyi
Publisher: BRILL
ISBN: 1848881509
Category : Psychology
Languages : en
Pages : 192
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Book Description
This volume was first published by Inter-Disciplinary Press in 2013. Chronic illness, together with people experiencing or treating it, became almost mute to predominant biomedical narration pervasive in mainstream media, education, medical and pharmaceutical industry. Contributors in this book aim to represent, discuss, and preserve the vanishing voices and stories on chronic illness from dimensions beyond medicine so that we may make sense of chronicity with the diversity it deserves. The book also incorporates research articles which share important stories about chronicity. These stories, same as chronic illness in our world, should not be treated in a ‘standardised’ way. Each reader, we hope, will relate the meanings of chronicity in this book to his or her own world.
Author: Lenore Manderson
Publisher: Rutgers University Press
ISBN: 0813547466
Category : Medical
Languages : en
Pages : 333
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Book Description
"A major collection of essays from leaders in the field of medical anthropology, Chronic Conditions, Fluid States pays much-needed attention to one of the greatest challenges currently faced by both the wealthiest and poorest of nations. For anyone wishing to think critically about chronic illness in cross-cultural perspective, the social forces shaping this issue, and its impact on the lived experiences of people worldwide, there is no better place to start than this pioneering volume."---Richard Parker, Columbia University, and editor-in-chief, Global Public Health --
Author: Peggy Munson
Publisher: Routledge
ISBN: 1135411743
Category : Medical
Languages : en
Pages : 297
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Book Description
Develop a better understanding of what CFS/CFIDS sufferers are going through!In the 1980s, a strange emerging epidemic baffled doctors in Incline Village, Nevada. Dismissed by the media as “The Yuppie Flu,” Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) turned out to be neither a faddish disease of the wealthy nor a passing trend, but rather a growing worldwide epidemic of devastating proportions.In the voices of a South African journalist, a former marathon runner, a teenage girl, a public health activist living on the edge of race and gender, a cancer patient neglected by doctors because of disdain for her chronic illness, and a theologian relearning the art of spiritual empathy, the people who share their stories in Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome defy cultural stereotypes and explore the complex social and political dynamics of this hidden epidemic. Through their distinct points of view, we feel the grief and hope of those stricken with CFIDS and learn of the complex nature of this misunderstood disorder. These are compelling stories about a quiet and baffling epidemic. The first American anthology to contain stories from a diverse range of people with CFIDS, Stricken offers an intimate look at the political and social issues surrounding CFIDS, as told by those who are living through this ordeal. Stricken addresses several issues, such as: why some doctors still do not believe CFIDS is real how the disease is mocked in the media myths about this illness the personal fight for medical or public recognition the skepticism and hope that is felt by the ever-growing number of CFIDS sufferers Stricken confronts fascinating CFIDS issues such as the Kevorkian suicides, accusations of Munchausen Syndrome By Proxy, Gulf War Syndrome, the role of storytelling in a memory-impaired patient movement, and the feasibility of mass activism in a disabled population. With contributions from Pulitzer-prize nominated writer Susan Griffin, renowned health writer and radio host Gary Null, well-known feminist activist Joan Nestle, and award-winning poet and essayist Floyd Skloot, Stricken is an eloquent testament to the heroism, defiance, and diversity of the CFIDS community.
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309316928
Category : Medical
Languages : en
Pages : 251
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Book Description
Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological - rather than psychological - nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness - systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical - not a psychiatric or psychological - illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.
Author: Ilene Morof Lubkin
Publisher: Jones & Bartlett Publishers
ISBN: 0763799661
Category : Medical
Languages : en
Pages : 738
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Book Description
The newest edition of best-selling Chronic Illness continues to focus on the various aspects of chronic illness that influence both patients and their families. Topics include the sociological, psychological, ethical, organizational, and financial factors, as well as individual and system outcomes. This book is designed to teach students about the whole client or patient versus the physical status of the client with chronic illness. The study questions at the end of each chapter and the case studies help the students apply the information to real life. Evidence-based practice references are included in almost every chapter.
Author: Meghan O'Rourke
Publisher: Penguin
ISBN: 1594633797
Category : Health & Fitness
Languages : en
Pages : 337
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Book Description
A NEW YORK TIMES BESTSELLER FINALIST FOR THE 2022 NATIONAL BOOK AWARD FOR NONFICTION Named one of the BEST BOOKS OF 2022 by NPR, The New Yorker, Time, and Vogue “Remarkable.” –Andrew Solomon, The New York Times Book Review "At once a rigorous work of scholarship and a radical act of empathy.”—Esquire "A ray of light into those isolated cocoons of darkness that, at one time or another, may afflict us all.” —The Wall Street Journal "Essential."—The Boston Globe A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases A silent epidemic of chronic illnesses afflicts tens of millions of Americans: these are diseases that are poorly understood, frequently marginalized, and can go undiagnosed and unrecognized altogether. Renowned writer Meghan O’Rourke delivers a revelatory investigation into this elusive category of “invisible” illness that encompasses autoimmune diseases, post-treatment Lyme disease syndrome, and now long COVID, synthesizing the personal and the universal to help all of us through this new frontier. Drawing on her own medical experiences as well as a decade of interviews with doctors, patients, researchers, and public health experts, O’Rourke traces the history of Western definitions of illness, and reveals how inherited ideas of cause, diagnosis, and treatment have led us to ignore a host of hard-to-understand medical conditions, ones that resist easy description or simple cures. And as America faces this health crisis of extraordinary proportions, the populations most likely to be neglected by our institutions include women, the working class, and people of color. Blending lyricism and erudition, candor and empathy, O’Rourke brings together her deep and disparate talents and roles as critic, journalist, poet, teacher, and patient, synthesizing the personal and universal into one monumental project arguing for a seismic shift in our approach to disease. The Invisible Kingdom offers hope for the sick, solace and insight for their loved ones, and a radical new understanding of our bodies and our health.
Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 030921484X
Category : Medical
Languages : en
Pages : 383
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Book Description
Chronic pain costs the nation up to $635 billion each year in medical treatment and lost productivity. The 2010 Patient Protection and Affordable Care Act required the Department of Health and Human Services (HHS) to enlist the Institute of Medicine (IOM) in examining pain as a public health problem. In this report, the IOM offers a blueprint for action in transforming prevention, care, education, and research, with the goal of providing relief for people with pain in America. To reach the vast multitude of people with various types of pain, the nation must adopt a population-level prevention and management strategy. The IOM recommends that HHS develop a comprehensive plan with specific goals, actions, and timeframes. Better data are needed to help shape efforts, especially on the groups of people currently underdiagnosed and undertreated, and the IOM encourages federal and state agencies and private organizations to accelerate the collection of data on pain incidence, prevalence, and treatments. Because pain varies from patient to patient, healthcare providers should increasingly aim at tailoring pain care to each person's experience, and self-management of pain should be promoted. In addition, because there are major gaps in knowledge about pain across health care and society alike, the IOM recommends that federal agencies and other stakeholders redesign education programs to bridge these gaps. Pain is a major driver for visits to physicians, a major reason for taking medications, a major cause of disability, and a key factor in quality of life and productivity. Given the burden of pain in human lives, dollars, and social consequences, relieving pain should be a national priority.
