How To Be Sick: Discussion 2

“You can argue with the way things are. You’ll lose, but only 100% of the time.”
-Byron Katie

As we finish reading the section of the book titled How Everything Changed, we learn about some of Toni’s secret coping mechanisms for making it through the her part-time workday, including–but not limited to–peeing in a thermos. We’re also treated to an alphabet soup of acronyms (CFS, PVS, VICD, OI, POTS), as we read about the laundry list of conditions and diseases that Toni was diagnosed with.

Discussion Questions

  • Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?
  • If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?
  • We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

Cassie Lane

Real Profiles of Rheumatoid Arthritis
Photos © Cassie Lane

Name?

Cassie Lane

Age?

26

Location?

Coventry, Connecticut, United States

How long have you lived with RA?

I was diagnosed quite recently, but I can only guess as I have had many symptoms for the past 4-5 months.

What advice would you give to someone who has just been diagnosed with RA?

Try your best to stay positive and find some humor in it. Life’s too short to look at what you don’t have, or what you are unable to do. If you have kids, watch them grow and learn. If you feel you are “too young” to have RA, find a positive perspective, think of all the people you can help just by listening and being supportive. If you are spiritual, pray or meditate.

Do you use any mobility aids?

Braces.

How has living with RA helped to improve your life?

It has actually made me very grateful. For my children, my husband especially, I was afraid with something like this he would become frustrated and leave. But he’s had my back 100%!! And the kids are great help too!!

Do you have any visible signs of RA?

I walk very stiff and sort of limp a lot. I have incredible difficulty bending either of my legs just to sit down, getting up is even worse lol. Also, packages…they suck, cannot open them very well.

Can you please describe some of your favorite coping strategies for living with RA?

Looking at what I still have rather than what I do not. A lot of self talk/reassurance. Writing seems to help as well! Helping others whether it’s RA related or not, there’s always somebody who is worse off than you.

Can you please describe your current medical (traditional and alternative) treatments?

I have not seen a rheumatologist yet, the only thing I am taking is Motrin 600 to curb the pain. I also do a lot of yoga to help stretch and release tension. Much meditation to relax my mind and nerves.

Is there anything else about yourself that you would like to share?

I was also diagnosed with MS in early 2010, so upon hearing that I could have TWO autoimmune disorders really threw me for a loop. It’s been a ride but I am determined to stay strong and live a healthy, active life.

Show Us Your Hands! Establishes Founding Committee To Help Raise Awareness Of Autoimmune Arthritis

CHICAGO, Illinois (January 24, 2012) – Show Us Your Hands! is pleased to announce the new collaborative effort of three leading advocates from the autoimmune arthritis blogging community. Lene Andersen (The Seated View) and Cathy Kramer (The Life and Adventures of Cateepoo) have joined forces with RA Guy (Rheumatoid Arthritis Guy) to organize creative community projects and effective awareness campaigns aimed at increasing the public’s understanding of autoimmune arthritis.

Show Us Your Hands! started as a community collage project in December 2011. The interactive digital collage and commemorative poster include hundreds of photos of the hands of individuals who live with autoimmune arthritis, and represent people of all ages from around the world. This inaugural project serves not only as a symbol of the wonderfully supportive autoimmune arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their autoimmune arthritis hands. New photos continue to be added to this community collage on a regular basis.

Upcoming initiatives will build upon the overwhelming success of and positive community reaction to this initial project. The three members of the founding committee are currently working on establishing an organizational roadmap, and in the coming weeks will be announcing the details of the first of many upcoming projects and campaigns. “Reading through the responses to Show Us Your Hands! and viewing the photos of all the hands, I am overwhelmed by the strength of our community. Together we have built a relationship of understanding and compassion to replace what for many has been a void. As Show Us Your Hands! moves forward, I am excited to see that strength grow,” says founding member Cathy Kramer.

Autoimmune diseases occur when a body’s immune system mistakenly attack healthy tissue. In the case of autoimmune arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common autoimmune arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease, and Systemic Lupus Erythematosus.

Show Us Your Hands! is an international awareness movement which serves to unite and inspire the autoimmune arthritis community. For more information, please visit www.showusyourhands.com. Show Us Your Hands! can also be found on Facebook and Twitter.

Women’s Health Magazine: When Your Body Attacks

When Venus Williams bowed out of the U.S. Open last fall due to Sjogren’s syndrome, you may have thought, What? But her problem is more common than many think. Sjogren’s belongs to a group of some 80 autoimmune diseases in which the immune system goes haywire and attacks healthy tissue and organs.

Most such illnesses share a few traits: They are on the rise, run in families, are most prevalent in women, and are notoriously difficult to figure out. Patients often see four or more doctors over five years before being correctly diagnosed or finding proper treatment. The key is to identify the disease before it does any lasting damage. Here’s how a handful of women and their doctors unraveled the mysteries of five common conditions.

Read more: http://www.womenshealthmag.com/health/immune-system-fix

How To Be Sick: Discussion 1

This is a book for people who will not be their old self again and for all those for whom, at least now, getting better isn’t possible. This is a book that most reassuringly says even to those people, “You too are going to be okay–even if you never recover your health!” -Sylvia Boorstein

Author Toni Bernhard (who is participating in this book club!) tells us, in the preface of “How To Be Sick,” that she wrote this book “to help and inspire the chronically ill and their caregivers as they meet the challenges posed by any chronic illness or condition, including: coping with symptoms that just won’t go away, coming to terms with a more isolated life, weathering fear about the future, facing the misunderstanding of others, dealing with the health care system, and for spouses, partners, and other caregivers, adapting to so many unexpected and sometimes sudden life changes.”

In the section of the book titled How Everything Changed, we first read about how Toni got sick, and then how–to her surprise and bewilderment–she stayed sick.

Discussion Questions

  • How long did it take you to realize that you had a chronic illness, and that life just wasn’t going to go back to the way it ‘used to be’?
  • Once it became clear that you were living with chronic illness, did you or anyone else in your life experience feelings of denial?
  • Did you ever refuse to make certain changes, even though you could see that participating in some of your usual activities/routines was doing more harm than good?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.