ABC’s Of RA: Preparing For A Flare

“Having ra requires one to be on top of their game with planning. So often we are left wondering when, where, and how a flare will arise. We might never find definitive answers to the when, where, and how of a flare but rest assured if you have ra, you will get a flare.

Often a flare can put us out of commission for days on end.  If we are lucky our flare may last for just a few hours or if we aren’t so lucky, they can last months.  And this is precisely why planning for a flare is so critical.  We already know that a flare can rob us blind. It can take our happy disposition, it can steal away our determination, it can humble us with pain but it need not completely put you into a stress meltdown with wondering how in the world am I going to do anything with this flare.”

Read More: http://abcsofra.blogspot.com/2012/01/preparing-for-flare.html

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How To Be Sick: Discussion 3

“Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”
-Zen teacher Charlotte Joko Beck

As we begin reading the section of the book titled Accepting Pain, we are introduced to The Four Noble Truths. The Four Noble Truths explain the nature of dukkha (often translated as ‘suffering’), its causes, and how it can be overcome. “To capture the essence of what the Buddha meant by the presence in our lives, it’s helpful to keep other possible translations of this key word in mind: unsatisfactoriness (that is, dissatisfaction with the circumstances in our life), anguish, stress, discomfort, dis-ease, to name just a few. Dukkha is a term worth becoming familiar with, especially when exploring how to be sick.”

We then move on to read about the universal law if impermanence, which is recognized by many spiritual traditions and science as common factor to the life of every living being. “Anything can happen at any time.” “Everything is impermanent.” “Life is impermanent, uncertain, unpredictable, ever-changing.”

Sentences which bought a big smile to my face: “…when I needed to go somewhere off the bed, I crawled. Our dog, Rusty, was delighted to see this. He acted like I’d finally seen the light and was going his species. This appeared to be a cause for great celebration on his part, so my challenge became to make sure that is his exuberance he didn’t step on my right foot.”

Discussion Questions

  • Have you been able to trace a feeling of dukkha back to the fact that you’re not getting what you want, or that you’re getting something you don’t want? If you have been able to map this connection, have you been able to let go of the “want/don’t want,” even if just for a moment? How did this make you feel?
  • Through the universal law of impermanence, have you been able to turn something that your previously considered to be a negative aspect of living with chronic illness into something that you now consider to be a positive part of your life?

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.

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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.

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Cassie

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.

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

(January 24, 2012) – Show Us Your Hands! is pleased to announce the new collaborative effort of three leading advocates from the autoimmune 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 inflammatory 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 inflammatory arthritis, and represent people of all ages from around the world. This inaugural project serves not only as a symbol of the wonderfully supportive inflammatory 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 inflammatory 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 inflammatory 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 inflammatory arthritis community. For more information, please visit www.showusyourhands.com. Show Us Your Hands! can also be found on Facebook and Twitter.

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