Each year, millions of people -- mostly women -- care for dying loved ones. Through surprising statistics, compassionate advice, and compelling interviews with 14 people, from family members who nursed a dying relative to professionals who regularly aid the terminally ill, this unique book shows caregivers what to expect and how to cope. It also suggests ways others can best support the caregivers in their tasks.
--Description from Amazon.com

The authors of this interesting and original book describe themselves as "lay caregivers of dying loved ones who have insights of interest to others like ourselves and to policy makers who would help us in our task." The seven-year study on which the book is based is original in three respects: the focus is on the care giver rather than the dying patient, the setting is primarily the home rather than a hospital or other institution, and the care giver is primarily a family member who may be assisted by a hospice nurse or other professional but who bears the day-to-day responsibility. The authors avow a feminist point of view, but this does not greatly intrude on the 14 case studies or interviews that make up most of the book. Indeed, 4 of the interviewees are men, and nearly half the 14 are professionals who are working with the family member.
--Review by The New England Journal of Medicine

This daring and thought-provoking chronicle encourages readers, both the healthy and the unhealthy, to become open, honest, and courageous in dealing with the sensitive issues surrounding a life invaded by chronic illness.
--Review by Amazon.com

When one's spouse is diagnosed with a serious illness, two lives are devastated. The partner is a victim, too. Author Chris McGonigle, who was a well spouse for fifteen years, draws on her own personal experience and on that of the many other men and women whom she interviewed and who spoke frankly to her about what it is really like to take care of a chronically ill spouse. Her honest book reassures readers that they are not alone in what they feel and are going through. The topics covered include initial reaction to the diagnosis; denial; communication; what losing the sexual part of marriage means; anger; violence; parenting; and spirituality. A final section tells where to turn for help. Through the wisdom and compassion of the many voices in the book, readers will learn how others cope and what they themselves can do to survive.
--Description from Amazon.com

Written by a young woman with Crohn's disease, this book is a source of strength, inspiration, and sound advice for young people diagnosed with chronic illnesses. It helps them learn to cope, know they're not alone, and make the most of the wonderful opportunities that lie ahead.
--Review by Amazon.com

In this deeply sensitive book, parents of disabled children describe with affecting candor how they first confronted their shattering experience--and then recovered to emerge stronger, healthier, and abler to cope and help their children. Black-and-white photographs.
--Review by Amazon.com

Offering supportive, practical advice from a leading child-life specialist, this book includes information such as what to tell a child about the illness, how to recognize early-warning signs in a child's drawings, sleep patterns, schoolwork and eating habits, and when and where to get professional help. Illustrations & Calvin & Hobbes cartoons.
--Description from Amazon.com

Every year millions of Americans are diagnosed with cancer, stroke, HIV/AIDS, multiple sclerosis, ALS, and other life-threatening or life-altering diseases. When faced with a devastating diagnosis people must quickly understand the diagnosis, prognosis, and choose from several treatment options-while still in shock. AfterShock identifies the processes required to respond to a serious diagnosis, regardless of the specific disease.
--Description from Amazon.com

Watch an interview with author Jessie Gruman on the Charlie Rose show HERE.

Available through The Institute for the Study of Health and Illness

About the Author and her Books:
Dr. Remen is no stranger to chronic illness. She was diagnosed at the age of 15 with Crone's disease. She is a master storyteller and a great observer of life. The wisdom in her books comes from many places, a loving old grandfather and his books of Jewish mysticism, from sick people and dying people and the doctors and nurses who serve them, from children and animals and the people who sit next to you on airplanes or stand behind you in the grocery store. It is the same wisdom you encounter in your own life every day. READ AN INTERVIEW WITH DR. REMEN. Dr. Remen's books are filled with interesting stories about healing and the human spirit. Dr. Remen also conducts workshops for doctor's and other medical professionals where she teaches them how to connect on a human level with their patients.
Other books by Dr. Remen include: Kitchen Table Wisdom and My Grandfather's Blessings.

--Description from PHCentral

Rarely does a book come along that tackles a perennially difficult human issue with such clarity and intelligence. Harold Kushner, a Jewish rabbi facing his own child's fatal illness, deftly guides us through the inadequacies of the traditional answers to the problem of evil, then provides a uniquely practical and compassionate answer that has appealed to millions of readers across all religious creeds. Remarkable for its intensely relevant real-life examples and its fluid prose, this book cannot go unread by anyone who has ever been troubled by the question, "Why me?"
--Review by Amazon.com

Millions of people suffer from invisible chronic illnesses - that is, diseases characterized by chronicity and symptoms that are not externally manifested. They may look well and even function normally while suffering extreme fatigue or pain or any of a number of distressing symptoms from such illnesses as multiple sclerosis, chronic fatigue syndrome, migraine, and Crohn's disease - to name a few. This book describes the anguish that individuals with invisible chronic illness endure and then offers them the means to cope with their illness. It teaches them how to become aware of the attitude they have toward the illness and the way they talk to themselves about it and about themselves. It shows how, with awareness and practice, they can change their illness narrative and how they can communicate with loved ones and doctors in a way that meets their needs. Invaluable not only to sufferers but also to spouses, family members, friends, employers, and physicians, this book offers both understanding and practical guidance.
--Review by Amazon.com

"Sick and Tired of Feeling Sick and Tired" is a well-written, although at times repetitive, book. The combined efforts of Paul Donohue, Ph.D. and Mary Siegel, Ph.D. produce a compilation of topics ranging from the definition of invisible chronic illness, seeking answers and cures, relating to family, friends and colleagues, coping with stress, dealing with physicians, getting and keeping the attention of the health-care system plus an array of other closely related topics.

The chronic illnesses that are highlighted in this book do not include pulmonary hypertension or any lung disorders whatsoever. It does refer to endometriosis, irritable bowel syndrome, multiple sclerosis, lupus and discusses chronic fatigue syndrome extensively. Why the authors chose not to relate to lung disorders is a mystery. There are numerous lung diseases that I thought could have at least been mentioned. It was also interesting that the authors usually referred to "she", as opposed to "he" when talking about the illnesses. It is obvious that endometriosis would require a "she" but all of the others seemed to follow suit. It is my opinion that it would have made a better "read" for everyone if reference was made to men with chronic illness from time to time.

There were several excellent chapters in this book that are extremely beneficial to people who are dealing with pulmonary hypertension. People who suffer from chronic illness were interviewed. Their scenarios were written into the book which made it more "life-like" and easier to relate to the person going through the turmoil of being diagnosed with a disease that just won't go away. People tend to seek answers to questions which don't have a single answer. We need and want to know answers but when the health system fails us or doctors refuse to listen, is when we must take charge. This was stressed repeatedly in this book. We also want to find a cure and just won't accept the fact that there is not a cure for most chronic illness. A persons search for a cure can destroy them mentally and physically. In turn, this puts stress on family and friends, making it a vicious circle to which there is usually no end. The authors succeed putting all of these topics into perspective from a patient's point of view.

One of the most poignant areas of the book was the discussion of how some people deny their illness and ignore signals from their body that it is time to rest, time to relax and reflect on exactly what is going. Simply, you must listen to your body.

On the whole, this book is definitely a must read for anyone who is dealing with chronic illness, invisible or otherwise. It is written without confusion and gives great insight to the reader as to how to cope with and fight chronic illness. It will be more beneficial to some than others based on when you were finally diagnosed, how long you have been dealing with the disease, and of course personality.
--Review by Reader: Carol Lo Re, PH patient

A startling number of Americans who look healthy and function normally suffer from recurring symptoms not visible to the eye. Their conditions may limit their enjoyment of life, and like the physically disabled, they are forced to deal with feelings ranging from anxiety and shame to anger and self-pity. Living Well with a Hidden Disability reassures readers that they aren't alone. With thoughtful, frank writing and useful worksheets, the authors offer strategies for dealing with pain and confusing emotions. They cover the effect of disabilities on everyday life, creating a valuable resource for adults who desire complete, productive lives.

--Description from Amazon.com

"Chronic illness doesn't come with an instruction manual," says Susan Milstrey Wells--so she wrote one. Afflicted with Sjögren's syndrome (an autoimmune disease that dries the eyes and mouth), fibromyalgia (a painful muscle disorder), and interstitial cystitis (a chronic inflammation of the bladder), she knows the ins and outs of coping with chronic illness. In A Delicate Balance, she provides a compelling mix of useful information and real-life stories (including an appendix of resource numbers for various medical and self-help organizations) to help others find the will and the way to survive and thrive.
--Description from Amazon.com

This book can make you both smile and weep, as did its predessor, "Living With Chronic Illness." "The Chronic Illness Experience: Embracing the Imperfect Life" is probably one of the most important books in my collection as I deal with chronic illness myself. I met the author in 1990 and heard her speak about the unique nature of rare and chronic diseases, and found myself nodding and smiling throughout her talk. If you are dealing with a chronic illness, you will re-read this book (or sections of it) for years as you experience different problems. I've marked mine up with yellow highlighter and underlining and have shared it with family members and friends to increase their knowledge and understanding of what it's REALLY like to live with a chronic illness.
--Review by A Reader from San Diego, CA USA

Are you tired? Achy? Depressed? Overweight?
You could be suffering from an autoimmune disease.

Autoimmune disease is the third major category of illness in the United States, yet very little is known about the many serious and chronic immune conditions. If you're one of the 50 million Americans suffering from one kind of autoimmune disease-whether it's lupus, rheumatoid arthritis, multiple sclerosis, thyroid disease, fibromyalgia, chronic fatigue syndrome, or Crohn's disease-there's a good chance you'll develop another.

This book can help.

Written by Mary J. Shomon, a well-known patient advocate who was diagnosed with autoimmune disease in 1995, this guide to alternative and natural remedies shows you how to treat the underlying causes of immune system imbalance, not just the symptoms. It contains first-person accounts from doctors, patients, and holistic practitioners, as well as checklists, quizzes, and a proposed recovery plan. In addition, it offers detailed information about:

• The most common autoimmune conditions • The factors that can lead to autoimmune disease • Interpreting your symptoms • Procedures and treatments • Finding the right doctor

Until we find a cure, living with autoimmune disease can be frightening and frustrating. But it doesn't have to be. This valuable guide helps you understand what may be causing the disorder and helps you take the first healthy, natural steps toward correcting it.
--Description from Amazon.com

Autoimmune diseases affect 50 million Americans, mostly women, who frequently remain undiagnosed and untreated, or are treated ineffectively. Living Well with Autoimmune Disease helps readers pinpoint symptoms, find the right practitioner, and learn cutting-edge approaches to reduce symptoms and reverse their disease.
Author Mary Shomon, who has the immune disease Hashimoto's thyroiditis, explains how the immune system is supposed to work, and what can go wrong. Then she discusses more than 20 specific autoimmune diseases--such as chronic fatigue syndrome, inflammatory bowel disease, lupus, thyroid disease, Graves' disease, rheumatoid arthritis, type 1 diabetes, fibromyalgia, scleroderma, and multiple sclerosis. For each, she covers symptoms, diagnosis, and treatment.

Shomon, a patient advocate and Web guide for people with thyroid disease, hears the most success stories from people who combine conventional treatment with complementary therapies, so she gives specific strategies for using herbs, diet, and mind/body therapies. She also includes a 30-page checklist of risk factors and symptoms (helpful when you have no idea what condition you might have), a guide to finding and working with the right practitioner, and an extensive resources section that includes patient support organizations, Web sites, and books.
--Review by Amazon.com

An inspiring and profoundly enlightening exploration of one doctor's discovery of how hope can change the course of illness.

Since the time of the ancient Greeks, human beings have believed that hope is essential to life. Now, in this groundbreaking book, Harvard Medical School professor and New Yorker staff writer Jerome Groopman shows us why.

The search for hope is most urgent at the patient's bedside. The Anatomy of Hope takes us there, bringing us into the lives of people at pivotal moments when they reach for and find hope--or when it eludes their grasp. Through these intimate portraits, we learn how to distinguish true hope from false, why some people feel they are undeserving of it, and whether we should ever abandon our search.

Can hope contribute to recovery by changing physical well-being? To answer this hotly debated question, Groopman embarked on an investigative journey to cutting-edge laboratories where researchers are unraveling an authentic biology of hope. There he finds a scientific basis for understanding the role of this vital emotion in the outcome of illness.

Here is a book that offers a new way of thinking about hope, with a message for all readers, not only patients and their families. "We are just beginning to appreciate hope's reach," Groopman writes, "and have not defined its limits. I see hope as the very heart of healing."
--Description from Amazon.com

They have made the impossible climb into the spotlight and attained their brightest dreams. But for Mike Wallace, Kitty Dukakis, William Styron, Joan Rivers, and countless other people struggling against the debilitating effects of depression, life's most challenging battle is waged, not in the public eye, but in the darkest recesses of the mind. In her brilliant new work, Kathy Cronkite gives voice to dozens of celebrated professionals who have endured--and conquered--the hopelessness of chronic depression. Most of all, this courageous book brings a ray of hope to the 24 million Americans who live in the shadows of this misunderstood disease, yet bravely seek a path toward the light.
--Description from Amazon.com

Thompson spent years struggling to repress the outward signs of her inner turmoil, battling major depressive episodes to become a successful career woman, but always hostage to a hidden fear that the Beast would prove more powerful than she was. The Beast gives voice to the brain's dysfunction with eloquence and unflinching honesty, and is a survivor's courageous inquiry into the source and cure of an illness.
--Description from Amazon.com

The master of medical suspense takes you to prestigious Boston Heart Institute, where some patients are dying to get well.... After a troubled past, Dr. Brian Holbrook has been given a second chance to prove himself. At state-of-the-art Boston Heart Institute, he's been chosen to join the medical team testing a new miracle drug. The initial results are so promising that Brian pushes to get his father--who suffers from a dangerous heart condition--accepted into the study. But Brian is beginning to suspect his superiors are hiding something. Why are crucial records disappearing? Why did a patient making startling progress suddenly die? Is the miracle drug a prescription for death? The answers could cost Brian more than his career. For at Boston Heart Institute, knowing too much is the quickest way to the morgue.
--Description from Amazon.com

This medical thriller takes place at a prestigious hospital in Boston. Dr. Brian Holbrook, a brilliant cardiologist who lost his license because of an addiction to pain killers, has recently gotten clean and is about to be given another chance to get his life back on track. His license is reinstated and he is asked to join the medical team testing a new drug. Dr. Holbrook is especially interested in this "miracle cure" for cardiovascular disease because his father has a serious heart condition. As he studies the medical records and interviews patients, he sees that this drug has the potential of saving millions of lives and making most heart bypass surgeries unnecessary. He also makes a startling discovery--some of the patients have developed "an uncommon, initially subtle and almost invariably fatal disease" called Pulmonary Hypertension. As Dr. Holbrook delves deeper into patients' histories and test results, he gets the idea that his theory about the miracle drug causing PH is true; but when he tries to make this knowledge public, he finds his life and career threatened by unknown and unseen forces.

I found this story to be exciting and well written, but my obvious fascination stemmed from the attention given to Pulmonary Hypertension. So many of the descriptions of the cath lab, VQ Scans, EKGs and various other tests were uncomfortably familiar. The process involved in getting new drugs tested, FDA approved and on the market is explored in detail. I know a lot of PH Friends can relate to "double blind studies," "Phase one trials" and "placebo groups". The author also makes some interesting comments about how publicity and politics have a lot to do with where research monies go. Now, keeping in mind that this is a work of FICTION, I still found myself feeling very much a part of the story and agreeing with so much of the theme of the inequity and inefficiency of the system that decides what diseases are worthy of being cured. All in all, a very good read with a lot of intrigue and plot twists and even some romance thrown in. The involvement of Pulmonary Hypertension gives me even more reason to recommend this book.
--Review by Reader: Leslie Larson (Caregiver)

People who do not have lupus really don't know what it feels like. This volume moves us forward with its moving and hopeful portraits of men and women who deal with the disease every single moment. Thus, to read this is to truly learn. I have the honor of recognizing many of you who have contributed to this book. You are my heros and heroines. "For those of us who work with you toward a better tomorrow, these writings are inspiration to do better, work harder, think more deeply and understand the importance of our goals of suppressing, curing and ultimately preventing lupus.
--Review by Bevra H. Hahn, MD, Professor of Medicine UCLA, Co-Chair Lupus International Medical Advisory Board

A great travel guide providing solid, detailed accessibility information and on-target travel know-how.· An invaluable aid for travelers with mobility problems and hearing and vision impairments and for the people who travel with them.· Each chapter a miniguide to the destination it covers, including: · Where to stay---charming inns and B&Bs, affordable hotels and motels, scenic campgrounds.· Where to eat---bistros and cafés, diners and delis, pizzerias and pasta places, and even the occasional fancy restaurant.· What to see and do, from famous landmarks to explorable neighborhoods.· Outdoor fun for the entire family.· Where to shop for regional crafts and local souvenirs.· Great entertainment, from Broadway shows to country jamborees.· Every entry loaded with accessibility information---everything from curb cuts and entrance ramps to roll-in showers and high sinks to pools with hydraulic lifts, Braille menus and signage, lowered phones, and more.· Covers the best of America's travel destinations, including Boston, Cape Cod, Charleston, Chicago, the Everglades, Gettysburg, the Grand Canyon, the Grand Tetons, Las Vegas, the Lincoln Trail, Los Angeles, the Maine coast, Memphis, Miami, Minneapolis and St. Paul, Nashville, the Natchez Trace, New Orleans, New York City, Niagara Falls, the Outer Banks, Pennsylvania Dutch Country, Philadelphia, Rocky Mountain National Park, San Antonio and Austin, San Diego, San Francisco, Santa Fe and Taos, Savannah, Seattle, the Texas Gulf Coast, Walt Disney World, Waikiki and Honolulu, Washington, D.C., Williamsburg, Yellowstone, and Yosemite.
--Description from Amazon.com