CSA Book Corner

Canadian Spondylitis Association Book Corner

Books To Read If You’ve Recently Been Diagnosed With Spondylitis or You’re Chronically Ill

Being young and chronically ill is hard and it’s difficult to navigate the troubled waters that surround us when we are chronically ill.

In order to better assist our members, one of our initiatives in the new year is a book group created specifically for Canadian Spondylitis Association members and guests. In 2019, we will be launching a quarterly reading program to discuss books that are related to Spondylitis, co-morbidities, chronic pain, chronic illness, how to manage health care appointments, and more.

This page will feature reading resources for education, treatments, health management, diet, exercise, and support for members who suffer from or who have loved ones who suffer from ankylosing spondylitis, axial spondyloarthritis, and related diseases such as psoriatic arthritis,  IBS and IBD (ulcerative colitis and Crohns), psoriasis, heart and stroke, and disability.

Our list of good reads is geared towards patients and caregivers. These are all terrific reads that include information about what to expect, how to cope, how to navigate your health care appointments, as well personal accounts of what it’s like to live with Spondylitis and its associated co-morbidities.

Many of the books you see on this page have been recommended to our readers by CSA members on our CSA Facebook page. We encourage you to reach out and get involved with us, recommend books, and leave suggestions for those of us who use reading as a coping technique. Maybe you’ll even be inspired to write about your own journey, but at the very least, these books will aid you and let you know that you are not alone in this fight.

The books listed in the bookshelf are recommended by CSA members to encourage open dialogue on our Facebook page. Please keep a look out on our Facebook page for upcoming book discussions and please DO get involved. We want to hear from you!

We hope that this page will grow as our organization continues to grow. Most of all, we hope that the books that we select and add to this page are useful to you!


If you’re wanting to become more knowledgeable, here are some medical textbooks on AS:

Oxford Textbook of Axial Spondyloarthritis by Robert Inman and Joachim Sieper Robert Inman and Joachim Sieper - Oxford Textbook of Axial Spondyloarthritis

Axial Spondyloarthritis is a timely addition to the Oxford Textbooks in Rheumatology series, providing a comprehensive reference to this rapidly evolving field. The conceptual framework of the disease has now evolved beyond ankylosing spondylitis to encompass a broader concept of axial inflammation. Earlier recognition has opened the door to earlier intervention, and the understanding of the biologic basis of axial SpA has seen significant advances in recent years.

The first textbook to cover axial spondyloarthritis in this level of detail from a global perspective, this volume offers a practical and complete resource compiled by a multidisciplinary and multinational team of experts. Beginning with a historical perspective on the disease, the textbook provides a comprehensive background in the epidemiology, diagnosis, and classification of axial spondyloarthritis. Immune mechanisms and genetics are covered, along with imaging and a detailed section on the range of treatments options currently available. A section on extra-articular manifestations provides a comprehensive knowledge base for the clinician treating patients with spondyloarthritis, and chapters on the economics of the disease, physical functioning, and patient registries complete the broad coverage of the topic.

Practical, easy to use, yet detailed with respect to pathophysiology, diagnostics, and management, this textbook provides a comprehensive reference for rheumatologists, general practitioners, internists, and paediatricians managing patients with axial spondyloarthritis.

Buy it here!

Ankylosing Spondylitis: A Reference Guide by Joseph Estenson Joseph Estenson - Ankylosing Spondylitis - A Reference Guide

Joseph Estenson is a medical researcher and reference librarian with over 20 years experience researching complex public health issues.

The Hill Resource and Reference Guide series is a comprehensive and authoritative source of quality health research sources for both the layperson and medical health professional. Each guide compiles the most important bibliographic scientific research materials for one specific disease or health disorder.
A breakthrough text on researching disease each volume also explores the basics of researching medical conditions online and provides direct access to research databases used by all renowned professional medical scientists.
Each volume is organized in reference format allowing the reader to go directly to any chapter without first reading a preceding chapter.Logically arranged separate chapters cover:
* Epidemiology – distribution of disease
* Etiology or Aetiology – disease cause and risk factors
* Diagnosis – disease identification
* Signs and Symptoms – physical/psychological nature of disease
* Pathophysiology – the body’s response to disease
* Treatment and Therapy – methods to relieve or heal a disorder
* Prognosis – likely course or outcome of a medical conditionAdditional sections also provide readers with best resources available for studying alternative medicine and complementary medicine, the role of nutrition in disease, information sources on drugs and prescription medications, herbal remedies and biotechnology and a short explanation of Evidence Based Medicine, the dominant paradigm in patient care and treatment in Western medicine.Finally, instruction in how to freely access and search the National Institutes of Health multiple research databases, including PUBMED and MEDLINE, is also included.Packed with useful information, each edition is intended to be used with the bonus downloads to provide readers with their own comprehensive and essential medical library.
BONUSES INCLUDED
18 Health and Disease Professional Textbooks (over 5,300 pages) For Your E-Reader* BONUS Encyclopedia of Disease (14 volumes, 4,625 pages)

* BONUS Dictionary of Clinical Research Terms (268 pages)

* BONUS Dictionary of Psychiatry Terminology (167 pages)

* BONUS The Complete Guide to Alternative and Complementary Medicine (135 pages)

* BONUS The Truth About Herbal Cures (106 pages)

Available for FREE on Kindle Unlimited!

Ankylosing Spondylitis E-Chart: Quick Reference Guide by HC-HealthCommAnkylosing Spondylitis E-Chart: Quick Reference Guide by HC-HealthComm

Ankylosing spondylitis
Clinical Features
Diagnostic criteria
Schematic view of the progression of ankylosing spondylitis
Lateral view
Anteroposterior view
Sites of inflammation
Normal Anatomy
Sacroiliitis with fusion of lumbar and coxofemoral joints
Cervical Spine
Thoracic Spine
Lumbar Spine
Recommendations for patients

Available for FREE on Kindle Unlimited!

Ankylosing Spondylitis Pyramid: The Lifestyle That Lets You Take Back Control by Michael W. Smith Michael W. Smith - Ankylosing Spondylitis Pyramid

The best treatment for ankylosing spondylitis is medicine, right? Many doctors would agree. That’s where traditional medicine has done a disservice to all of us living with AS. You need to focus on what you can do to help your AS – not what your doctor can do. If you make medicine your top priority, you’ve lost the battle.

As a physician and patient with ankylosing spondylitis for more than 30 years, Michael W. Smith, MD is in a unique position. Too many patients with AS focus their energy on the wrong things. That’s what drove Dr. Smith to develop the Ankylosing Spondylitis Pyramid, to show you how to incorporate everything from physical activity to diet and complementary therapies into your lifestyle – and yes, medicine too.

He shares his journey and shows you how to make it happen for yourself. Dr. Smith invites you to contact him for tips on how to make the AS Pyramid lifestyle work for you.

Dr. Smith is a board-certified doctor of internal medicine, and serves as the Chief Medical Editor and Medical Director for WebMD. He has a passion for helping people live healthy, active lifestyles, and is a personal trainer certified by the American Council on Exercise, with a specialty certification in weight management. He also appears regularly as an expert on national broadcast media and has been featured in national health and fitness publications.

Buy it here!

Kicking my AS by Kip Jennings Kip Jennings - Kicking My AS

At 8:12 on a sunny, September morning my doctor’s assistant called. “How far are you away from a hospital?” she asked. And so began what would ultimately be my life with Ankylosing Spondylitis, also known as AS…

AS literally impacts millions of American lives, yet is a disease very few people have heard of, let alone understand. Mention “cancer” to someone and they inevitably say, “Oh!” Say ”Ankylosing Spondylitis” to that same person and they’ll say, “Huh?” While the lack of knowledge of AS is understandable, it leads to misunderstandings and, ultimately, frustrations for not only the millions of sufferers AS but their friends, family and acquaintances.

What follows is a brief journey through Ankylosing Spondylitis. It is intended for both the sufferers of AS and their loved ones, and is an abridged version of what I’ve experienced, what it is, what sufferers say and – ultimately – how it has made me a better person. It is a story of information, frustration and – ideally – hope.

WARNING: This is a self-published book. It will contain a typo or two 🙂 It is also very short!

IMPORTANT AUTHOR’S NOTE AUGUST 2018: In response to a couple of the reviews, this is *NOT* a treatment guide. If you are looking for a treatment guide or an expert source or an in-depth explanation about this disease, this is *not* the book for you – you’ll be wasting your time, money and limited energy. Instead, this book is a ***brief*** summary of what I experienced as I went from being an extremely healthy middle-age adult to one who was suddenly suffering from an unknown disease that my friends and family did not understand (“maybe it’s just depression”). It is for people — both the sufferers and their loved ones — who want to know what someone else (I) experienced, and I hope this book helps you feel not alone in some small way.

Buy it here! 

If you’re interested in reading more about chronic illness:

Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties by Laurie Edwards Laurie Edwards Life Disrupted - Getting Real About Chronic Illness in Your Twenties and Thirties

“An inspiring guide to staying in control of your health care, your life, and your dreams despite having chronic illness, by a popular journalist and award-winning blogger.Twenty-seven-year-old Laurie Edwards is one of 125 million Americans who have a chronic illness.”
An inspiring guide to staying in control of your health care, your life, and your dreams despite having chronic illness, by a popular journalist and award-winning blogger.

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.

Buy it here!


Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Paul J. Donoghue and Mary E. SeigelPaul J. Donoghue and Mary E. Seigel - Sick and Tired of Feeling Sick and Tired - Living with Invisible Chronic Illness

Millions of people suffer from invisible chronic illness, that is, disease characterized by chronicity and by symptoms that are not externally apparent.
Unlike a leg in a cast, invisible chronic illness (ICI) has no observable symptoms.

Consequently, people who suffer from chronic fatigue, chronic pain, and many other miseries often endure not only the ailment but dismissive and negative reactions from others. Since its first publication, Sick and Tired of Feeling Sick and Tired has offered hope and coping strategies to thousands of people who suffer from ICI.

Paul Donoghue and Mary Siegel teach their readers how to rethink how they themselves view their illness and how to communicate with loved ones and doctors in a way that meets their needs.

The authors’ understanding makes readers feel they have been heard for the first time. For this edition, the authors include a new introduction drawing on the experiences of the many people who have responded to the book and to their lectures and television appearances.

They expand the definition of ICI to include other ailments such as depression, addiction, and obsessive-compulsive disorders. They bring the resource material, including Web sites, up to the present, and they offer fresh insights on four topics that often emerge: guilt, how ICI affects the family, meaningfulness, and defining acceptance.
Buy it here!

 

In the Kingdom of the Sick: A Social History of Chronic Illness in America by Laurie Edwards  Laurie Edwards - In The Kingdom of the Sick

“Thirty years ago, Susan Sontag wrote, “Everyone who is born holds dual citizenship in the kingdom of the well and the kingdom of the sick … Sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”

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.

Buy it here!

When the Body Says No: The Cost of Hidden Stress by Gabor Maté  Gabor Maté - When the Body Says No- The Cost of Hidden Stress

Can a person literally die of loneliness? Is there a connection between the ability to express emotions and Alzheimer’s disease? Is there such a thing as a “cancer personality”?

Drawing on scientific research and the author’s decades of experience as a practicing physician, When the Body Says No:  The Cost of Hidden Stress — published in the U.S. with the subtitle

Exploring the Stress-Disease Connection, and also available in audiobook format — provides answers to these and other important questions about the effect of the mind-body link on illness and health and the role that stress and one’s individual emotional makeup play in an array of common diseases.

  • Explores the role of the mind-body link in conditions and diseases such as arthritis, cancer, diabetes, heart disease, IBS, and multiple sclerosis
  • Draws on medical research and the author’s clinical experience as a family physician
  • Shares dozens of enlightening case studies and stories, including those of people such as Lou Gehrig (ALS), Betty Ford (breast cancer), Ronald Reagan (Alzheimer’s), Gilda Radner (ovarian cancer), and Lance Armstrong (testicular cancer)
  • Includes The Seven A’s of Healing: principles of healing and the prevention of illness from hidden stress

Buy it here!


If you’re looking for self help books:

How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Loved Ones by Toni Bernard Toni Bernard - How To Be Sick - A Buddhist-Inspired Guide for the Chronically Ill and Their Loved Ones

“Toni Bernhard got sick and, to her and her partner’s bewilderment, stayed that way…Toni learned how to live a life of equanimity, compassion, and joy. This book reminds us that our own inner freedom is limitless, regardless of our external circumstances.”

This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is – or who might one day be – sick. It can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or life-threatening illness.

Authentic and graceful, How to be Sick reminds us of our limitless inner freedom, even under high degrees of suffering and pain.

The author – who became ill while a university law professor in the prime of her career – tells the reader how she got sick and, to her and her partner’s bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms.

She had to learn ways to make “being sick” the heart of her spiritual practice – and through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. And whether we ourselves are ill or not, we can learn these vital arts from Bernhard’s generous wisdom in How to Be Sick.

Buy it here!

Jon Kabat-Zinn - Full Catastrophe Living - Using the Wisdom of Your Body and Mind to Face Stress, Pain, and IllnessFull Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn

From the founder of the Stress Reduction Program at the University of Massachusetts Medical Center comes this definitive guide to using mindfulness–moment-to-moment awareness–in coping with both illness and the day-to-day tensions encountered in life.

The landmark work on mindfulness, meditation, and healing, now revised and updated after twenty-five years
 
Stress. It can sap our energy, undermine  our health if we let it, even shorten our lives. It makes us more vulnerable to anxiety and depression, disconnection and disease.

Based on Jon Kabat-Zinn’s renowned mindfulness-based stress reduction program, this classic, groundbreaking work—which gave rise to a whole new field in medicine and psychology—shows you how to use medically proven mind-body approaches derived from meditation and yoga to counteract stress, establish greater balance of body and mind, and stimulate well-being and healing.

By engaging in these mindfulness practices and integrating them into your life from moment to moment and from day to day, you can learn to manage chronic pain, promote optimal healing, reduce anxiety and feelings of panic, and improve the overall quality of your life, relationships, and social networks.

This second edition features results from recent studies on the science of mindfulness, a new Introduction, up-to-date statistics, and an extensive updated reading list. Full Catastrophe Living is a book for the young and the old, the well and the ill, and anyone trying to live a healthier and saner life in our fast-paced world.

Buy it here!

Aches, Pains, and Love: A Guide to Dating and Relationships for Those With Chronic Pain and Illness by Kira Lynne Kira Lynne - Aches, Pains, and Love - A Guide to Dating and Relationships for Those With Chronic Pain and Illness

Are you living with chronic pain or illness, or both? Have you given up on having an intimate, romantic relationship?

Twenty years ago, a doctor told Kira Lynne that she would never be able to have an intimate relationship due to her chronic health conditions. Having proven that doctor wrong, Kira set out to write a book for people living with chronic pain and illness who believe the door has closed on their prospects for love and relationships.

Living with chronic pain and illness can feel overwhelming, never mind adding intimacy into the mix. Yet, even though hundreds of thousands of people in North America alone suffer from such conditions, very little has been published on dating and relationships for people with chronic pain and illness. Aches, Pains, and Love addresses that need with wisdom, compassion, and humour.

This is a book about hope, especially for those who feel that a loving relationship is beyond their reach due to their health conditions. You can have a loving, fulfilling partnership when you live with chronic pain and illness. It is possible to live joyfully in spite of illness and pain, to make new friends, deepen connections, and find lasting love and companionship in an intimate relationship.

Both entertaining and practical, Aches, Pains, and Love provides a step-by-step guide to getting the love you want, regardless of your physical condition. From creating a strong personal foundation to finding prospective partners, to dating, to sex and beyond, Kira offers a host of real-life stories, frank practical observations, and specific tools that will help you decide what you really desire in a loving relationship and guide you toward achieving that happiness.

Buy it here!

The Mindfulness Solution to Pain: Step-By-Step Techniques for Chronic Pain Management by Jackie Gardner-Nix Jackie Gardner-Nix - The Mindfulness Solution to Pain- Step-By-Step Techniques for Chronic Pain Management

Your mood, thoughts, and emotions can affect your perception of pain and even your ability to heal. In fact, your past life experiences influence your current physical challenges: “your biography influences your biology.”

Your mood, thoughts, and emotions can affect your perception of pain and even your ability to heal. In fact, your past life experiences influence your current physical challenges: “your biography influences your biology.” While treatments like medication and physical therapy can be enormously beneficial to the body, to maximize pain relief, it’s necessary to take advantage of the mind’s healing abilities. This book offers a revolutionary new treatment approach, mindfulness-based chronic pain management, that helps you harness your mind’s power to quiet your pain and put you in control.

Mindfulness practice, which includes stationary meditations, movement meditations, mindful art, and other strategies, will help you:

•Understand how emotions and thoughts affect physical symptoms
•Reverse the debilitating effects of some chronic pain conditions
•Prevent pain from becoming chronic or long-term
•Lift the anxiety and depression that may accompany chronic pain

Buy it here!

Books Coming Up For Release

Healthy Habits Suck: How To Get Off the Couch and Live A Healthy… Even if you don’t want to… by Dayna Lee-Baggley Dayna Lee-Baggley - Healthy Habits Suck - How To Get Off the Couch and Live A Healthy Life
Available July 2019 

Salad instead of steak? Working out? Skipping that second beer or glass of wine? Healthy habits are THE WORST.

If you’re someone who gets up every morning and can’t wait for your run, considers eating sweet potatoes a splurge, and sets aside thirty minutes before work to meditate—this book isn’t for you. If you’re someone who thinks about getting up to go for a run but goes back to sleep, regrets last night’s dinner of fast food, and can barely get to work on time—let alone meditate—then this book will help you find the motivation you’ve been looking for to live your healthiest life, even when you don’t want to.

With this funny, in-your-face guide, you won’t find advice on how to “enjoy” exercise, or tips for making broccoli and kale taste as good as donuts and ice cream. What you will find are solid skills to help you actually do the healthy things you know you should be doing. Using these skills—based in acceptance and commitment therapy (ACT) and neuroscience—you’ll learn to find the motivation you’re really craving to adopt healthy habits, even if they do suck. You’ll also discover how to accept self-criticism, develop self-compassion, and live a more meaningful life.

This book not only acknowledges that many healthy habits suck, it uses science to explain why we want the things we want (junk food), crave the things we crave (sugar), and dislike the things we dislike (exercise). At the end, you’ll feel validated in feeling like these things are the absolute worst. But you’ll also find the motivation to do them anyway.

Pre-order it here!


Carrie Kellenberger - CSA VolunteerAuthor Bio: Carrie Kellenberger is a Canadian living in Taiwan who was diagnosed with ankylosing spondylitis in 2009.

She is a freelance writer and health advocate for a number of arthritis associations. For more information on Carrie’s health advocacy work, please visit My Several Worlds where she writes about her experiences with chronic illness and her day-to-day adventures.