these are a few of my favo(u)rite things: 4.9.2010

Disclaimer: When I sent my draft over  from a Microsoft blogging template, things got kinda mixed up. So, this is not how I intended parts of the blog entry to look, but this is how they do now!

Have as pain-free Labo(u)r Day long weekend as you can!

September 4 favourite things

You may be familiar with the various Dove products campaigns that focus on inner and outer beauty in all its various shapes and forms. Much of the focus has been on creating strong, self-confident young women through afterschool programs, teaching materials, and activities. Their current project: What I wish I’d known at 13. Women are encouraged to visit the the Dove Movement for Self-Esteem website and send a brief note to your 13-year-old self. As the campaign literature suggests: “By sharing these messages with the next generation, women can inspire each other and the girls in their lives to reach their full potential.” My contribution: “No matter what people say or do: you can be proud that you are unique. Be true to yourself, you will find your way!” Now, if my 13-year-old self could just show me which way that is! J

Perhaps the way is made more clear by the articles in the Pain Community News (Fall 2010 Vol. 10, issue 4), including pieces on the virtual march on Washington, the 10,000 voices campaign (to get 10,000 people affected by pain to tell and submit their stories) and the state of pain care in the USA. I have mentioned the virtual march elsewhere in more depth, but I wanted to share my reasons for joining the march and adding my voice:

Chronic pain is an invisible illness and, as such, often does not get the attention of policy makers. Money for research, legislation to provide access to health care and medications, recognition of chronic pain as a disability: all of these actions would help to improve the quality of life for chronic pain survivors.

I’m marching on Washington to have my voice added to the growing cry, spearheaded by organizations such as the American Pain Association, for recognition and support in governmental policies and practices. As the motto of the American Pain Association Action Network states, this march is so we can truly “conquer [. . .] pain together.”

As September is Pain Awareness Month, a good deal of space is devoted to that topic. “Pain is news — voice by voice, community by community, we can make a difference! is the rallying cry of an article on how to pitch your pain story to the press to bring awareness to this invisible illness. Be as active as you can in letting the broader world (media, the government, community and church groups, medical societies) know about chronic pain’s many faces, many voices. I don’t know if I have the self-confidence in my current life (in my former life I was an educator and often a public speaker) to write or call the local newspaper, be interviewed for the a spot on the TV news, or address a meeting of an organization all of which I’ve done in those former lives. But, I’ll work on my courage (follow the yellow brick road) if not for this year, then next. For those a little more braver than I right now, the American Pain Association Action Network has a tool kit for reaching out to the press, your elected representative, public speaking and getting proclamations passed by municipal, and state legislators. So, let’s made PAM 2010 a very memorable one as we close the decade of focus on chronic pain issues.

Bravery can come in numbers, and when you are dealing with chronic pain, it’s good to have a buddy to dependent on. A medizine (I didn’t make up the term) Remedy: Health and Wellness for Life is a free print magazine put out by the pharmaceutical industry (all the ads are for medications). That said, and aside, the current issue: Fall 2010 has several articles of merit in terms of living with chronic pain and chronic illness: Friends & Health; Easing Joint Pain; Walk this Way (of course the old comedy gag by folks like the 3 Stooges came to mind) and side bars such as Write Off IBS! plus a contest.

The thesis of Friends & Health is that friendship can help you get better/healthier. The author, Stacey Colino suggests that: “Camaraderie can even help you heal from life-threatening illnesses. . . .” In a recent study involving . . . people who’d had heart attacks, researchers found that the women who had the highest levels of social support had a better quality of life, better physical functioning and fewer depressive symptoms. pg. 46 Carlos Mendes de Leon, a teaching physician posits that “Friendships may strengthen you mentally and physically, and that may be instrumental in slowing down chronic disease processes that can lead to a disability.” p.47

Colonio goes on to speculate as to the “characteristics of a good friendship.” Using Rosemary Blieszner, a specialist in human development at Virginia Tech Graduate school as her resource, she concludes that good friendships are built on mutual trust, respect and “respecting each other’s boundaries. ‘There are some things your good friend won’t want to talk about, and you have to accept that.'” p. 47

In “10 Ways to Beat Pain,” Kalia Donner explores the differences between acute and chronic pain and how physically and emotionally each is experienced. Quoting Dr. Scott M. Fishman, president of the American Pain Foundation, “Pain is an important alarm system . . .” and in the case of chronic pain, “the siren is always going off – even when there are no intruders.” p. 49

Donner outlines 10 steps, recommended by the American Pain Foundation, to approach your pain and your doctor including creating an itemized list of the most important issues, and setting realistic goals for managing your chronic pain. Describe your pain in words: severity of pain, sensations, and emotions the pain creates and with numbers: on a scale of 1 to 10. Make sure your doctor knows all the prescription, OTC, herbal medications you are taking. Bring this information and if complicated, bring a copy of your complete medical history to the appointment. Take notes, and bring along a “buddy” both for support. The article concludes with a discussion of the use of opioids in pain management based on suggestions by the American Pain Foundation: don’t increase your dose without discussing it with your doctor; be clear in relating how the medication is effecting your pain level and what this enables you to do. Finally, the caveat: don’t lose or share your medications. p.55

Of course, not surprisingly given the nature of this magazine, an advertisement for medications follows each article. But hey, it’s free advice, and there are some things to be learned: I just take the information with a grain or two of morphine!

And, that’s right, I mentioned a contest: In 200 words or less, tell “how you overcame a health crisis to become a stronger you.” (sounds like a prompt!) The top prize: a $1,ooo treadmill; other entries to appear in future editions of the magazine. Interested? Then send your essay, and a recent photo to: Remedy Success Secrets, 500 Fifth Avenue, Suite 1900, New York, NY 10110 or email: Let me know how it goes!

Toni Bernhard’s book How to Be Sick: A Buddhist -Inspired Guide for the Chronically Ill and Their Caretakers is now available through retailers such as and Barnes and Noble for less than $20. The table of contents supports what Toni says of her journey:

The book contains easy-to-learn tools and practices to help people live skillfully, maintain equanimity, and even find joy despite the profound changes in their lives. Each tool and practice is illustrated with examples from my own experience, so the book is also highly personal

As one reviewer put it: “Toni Bernhard offers a lifeline to those whose lives have been devastated by illness, and shows us all how to transform suffering into peace and even joy. A beautiful book filled with grace, humor, and humanity.” Lynn Royster, Director of the Chronic Illness Initiative at DePaul University

I, like many members of the chronic pain/chronic illness community are looking forward to reading a copy. Perhaps one of my favo(u)rite Saturday things will be a review. If you would like to review the book for this blog, by all means let me know:

And, I want to end this rather literary favo(u)rite things with a smile, so it’s more buttons from the FB/CFS/ME button nights:

Oh yeah, and by the way, my free pedometer did arrive, and it works! Have a great long weekend everybody!


but a moment of your time: survey please

Kathleen, author of a chronic pain journal, recently wrote a blog, “Perception of Yourself & Others With A Disability.” She opens with the question:

What is it you see in the mirror?

She then explores the perceptions of the people around her, and how there can be a disconnect between the outward image and the inward reality.

She is intrigued by how people reconcile how they feel on the inside to how they look on the outside. In order to further understand this, she has created a questionnaire; she writes:

I welcome ANYONE to fill this out. Once I receive enough submissions I will analyze the results and present them. The information will be kept confidential. It will not be shared, sold, distributed or released. It will be for the express use of this study. This questionnaire is not just for those with a physical/mental/emotional challenge, it is for everyone.

We are all aging (yes, you Thirtysomethings count too) and it is a timeless struggle. We all see the disabled every day, how do we treat them? How do we, the disabled, feel about ourselves and how we are perceived? Getting some type of answer might be helpful. I know that many of my Cyber Pain Friends have vented about how their friends “pre-disability” have disappeared. How their friends just don’t “get it” and how it affects the patients’ ability to cope with their lives.

I urge you to read the post, then take the survey. Both will give you pause for thought; perhaps a rethinking or reevaluation of reflections in the mirror; reflections in our eyes.