The ICI Experience:

New cartoon video by The Foundation for Taxpayer and Consumer Rights says it all. FTCR is a non-profit, non-partisan consumer watchdog group. They "fight corrupt corporations and crooked politicians every day." Health care crisis as depicted by pirates - music by Austin Lounge Lizards This organization seems to deal mostly with events in California.

There's only one rule and it's simple, just "Blog Against Abuse". Any kind of abuse. The topic I've chosen to blog about is verbal abuse. I first became aware of the concept of verbal abuse in the mid-1990's, I guess. I was wandering through the eclectic mini bookstore of the university where I matriculated and then worked for several years, and the book titled "The Verbally Abusive Relationship" by Patricia Evans just jumped out at me. (There's a slide show of links at the end of this post, to Ms. Evans' books on Amazon - which are currently the best books available on the subject.) I read the bulleted list (below) from the back cover of the book and answered 'Yes!' to every question when apparently just one 'yes' would have made the book required reading: • Does your partner seem irritated or angry at you several times a week? • Does he deny being angry when he clearly is? • Do your attempts to discuss feelings of pain ...

"Bloggers Against Abuse September 27th, 2007 The outcome we are after is to be part of the largest group of bloggers to ever blog about an important cause, all on the same day." I found this Great Cause Challenge, Blog Against Abuse, the other day, and that's how I discovered Blog Calalog . What is Blog Catalog? "Blog Catalog is the premiere social blog directory on the internet. Whether you're looking to promote your own blog or find blogs on various topics, this site is for you." I was impressed with the "Blogging for a Cause" campaign, so I applied for membership on Blog Catalog (I think they should shorten the name to Blogalog). I really think it's going to be worthwhile. I've already learned a lot that I can apply to my blog to make it better and discovered more blogs to read and use for inspiration. Of course I'm going to blog about abuse, verbal abuse to be specific, on Thursday 9/27/07. See you then, Sherril

I checked her book out at the library and I read sections of it. I'm not so good with non-fiction unless it reads like fiction. It's an excellent book, but mostly it doesn't read like fiction. Ms. Wall is a scholar and a feminist and her book reads like it was written by a scholarly feminist.

"Fibromyalgia information and education from FM health professionals at Oregon Health and Science University (OHSU)" The rheumys like this site the best because they say it's the most accurate. I like this site because: 1. They have THE BEST information on exercise with FM . Don't let anybody tell you that you must start exercising aerobically immediately. That is a perscription for failure. Always start your journey to fitness with a regular stretching program. The goal is to release some the muscle tightness which in turn will decrease the signals going to the brain. The next phase is to get the muscles stronger. After you are more flexible and stronger, you will be ready to begin aerobic or endurance activities. 2. They turned me on to the art of Frida Kahlo: This self portrait is titled "La Columna Rota" (1944) (The Broken Column). It has been speculated that Frida had FM. Read about it here .

Part I. Part II. Part III. The Benefits of Blogging About Your Illness Art has healing power. When I say art I mean all the arts: music, dance, sculpture, storytelling, journaling, painting, whatever we usually think of as the creative arena. Writing is art, therefore writing has healing power. I also find I’m making art on my blog in the sense that I use a lot of pictures on my blog posts. I use Flickr to find most of the pictures I use, but there is also PhotoBuket and probably many other sites where people post their pictures and if they allow you to use them, you can easily add them to your blog. It's also incredibly easy to add video and audio to your blog, for an all around super creative (and healing) result! Mike Samuels, M.D. is one of the leading pioneers in exploring creativity as an important part of every person’s healing journey. He says: "Physicians and nurses are discovering that art can have profound healing effects on their patients. Art b...

Before you know it, it will time to start thinking about ICI Week for 2008. If you want to put it on your calendar now... it's September 8-14, 2008. How can you keep the momentum going? I'll send out periodic blog posts about ideas and plans... * Blog if you blog, write about it on you MySpace site, add it to your web page. Not sure what to write? Post one of our press releases and then just comment. Invisible illness is a topic that is timeless. * Read your local papers, columnists, articles and more. Be sure to take note of what reporters tend to write about illness/pain/personal stories and contact them about your story and NICIAW. They may wish to do a story on you any time of the year, or put your story on the calendar for next September. * If you see a great article on illness in your paper or a national magazine, be sure to write a letter to the editor. * Add a signature file to your email any time. We have 9 versions or make up your own to fit any time o...

Part I. The Mechanics of Blogging About Your Illness Part II. Why Do People Write About Illness? As I mentioned in the first part of this presentation, writing about our illness is an age-old tradition. The cave people did it. It is simply being recast because of the internet. Here are some reasons people today say they blog about their illnesses: to clear my head - your mind gets cloudy when you get diagnosed, so you don't want to forget all the things you're hearing - and so you start to write them down; it gets hard to tell your story over and over again--it's easier to say to people 'Log on, and see where I'm at'; to create an info-portal for other people with a similar diagnosis; and to share stories about medical treatments with fellow sufferers. Some of us are comfortable with the thought of perfect strangers reading about our darkest fears, but we find ourselves unable to speak frankly with those closest to us. Yet on a blog, and through the proc...

As promised, here is the presentation I gave at the NICIAW Conference. It's in three parts. Thank you, Lisa. Hi Everyone. Thank you for coming to my presentation at National Invisible Chronic Illness Awareness Week, “Blogging About Your Illness”. I’ll stop for questions and answers after each section. If we run out of time, I’ll have some topics to suggest for next year’s conference! And if you have any questions that don’t get answered, feel free to email them to me at sherril@theiciexperience.org. I'll start by giving you a little background about myself. I was diagnosed with Fibromyalgia (FM) and Endometriosis (Endo) in 1989. I was diagnosed with cervical osteoarthritis this year. I was able to manage the illnesses and keep working full time until 2001 when I had to have surgery for the Endo, and complications from the surgery due to FM and "referred pain" that wouldn't go away have so far kept me from being able to return to work full time and per...

Well, it looks like the 2007 National Invisible Chronic Illness Awareness Week was a great success. I decided kind of at the last minute to run up to Nashville, TN to see my nephew get sworn in to the Air Force during that week. So I participated from my hotel room, and I wasn't able to "see" any of the other presentations live because I was either hanging out with my bro and his family or putting in the driving time it took to get there and back. But most of the transcripts are already up! Transcripts of all the presenters. The transcript of my presentation, "Blogging About Your Illness". Turned out I had too much information to share for my presentation. I only got through the first third. The good news is, it was because of "audience" participation that I didn't get through the rest of my information. Lots of people attended, and there were lots of questions when I finished the first section. I will be posting the other two parts of my pr...

Before I get down and dirty getting ready for the conference on Wednesday, here's some excellent invisible chronic illness humor from the Home on the Strange website by Veronica Pare and Ferrett Steinmetz. (Click on the comic to make it bigger.) And check out the discussion of this comic in their forum . By Jove, I think they've hit a nerve here! OK, so the discussion isn't so light. Save it for later, when you want to get heavy. That's what I'm doing.

Handout for Blogging About Your Illness By Sherrillynn Johnson, author of “ The Invisible Chronic Illness Expericnce” Blog Wednesday, September 12, 2007 at 6:00 p.m. EST Chatroom website address: http://www.restministries.org/pro-chat.htm The following are the resources I have used in putting my presentation together: 'Sick Blogs' Help Afflicted Share News, Seek Comfort http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2006/06/14/MNGUAJ9MLM150.DTL WeB LOG Usability: Top 10 Design Mistakes http://www.useit.com/alertbox/weblogs.html Female Bloggers Face Threats: What Can Be Done? http://abcnews.go.com/print?id=3107139 Blogging From Your Sickbed http://online.wsj.com/article_email/SB111516490949023959-Ihjf4NplaN4nJumaIKGbKmJm4.html WHERE TO PARK YOUR BLOG (All free) Blogger http://www.blogger.com WordPress http://wordpress.com/ BUILD CREDIBILITY Get the Healthcare Blogger Code of Ethics http://medbloggercode.com/ ...