The ICI Experience:

I'm back from the second root canal in two weeks.  I'm still sleeping a lot and am grateful that I can take the time I need for recovery. About the song; it says a lot for me, anyway... (If this video is skipping on your computer, or you can't see it in the email of this post, here's the direct link to it:  The Gratitude Song .) From The Worldwide Gratitude Project , a wonderful project to help us express our gratitude. I'll admit that I have a hard time seeing the good things in my life right now. Any help I can get is much appreciated!  I hope you find something there to help you express your gratiude.

A prayer for Sunday's post seems appropriate. Although I'm getting this post out so late that subscribers might not get it until Monday. Speaking of Monday, I have to have a root canal tomorrow. I forgot about that when I decided to try NaBloPoMo again. I'm not going to try to post tomorrow, which takes me out of the NaBloPoMo competition. I'll have to see how the root canal goes before I decide how often I'm going to try to post for the rest of the month. This Prayer for Peace was written by Thomas Merton , read in Congress on April 18, 1962 and placed in the Congressional Record. It was at the request of Frank Kowalksi, Congressman from Connecticut.  In 1962 the Vietnam War was happening, but it seems to be totally applicable here and now.  It also seems to me that it's a prayer that might be accepted by most religions. What does this have to do with chronic illness, you might ask?  I'll tell you what I think about that at the end of this p...

I usually don't like to use the term warrior, or any other word that makes me think of war or violence, to describe my relationship with chronic illness.  I just don't think it's a productive use of my energy to think of battling myself or anything else.  Then I watched the movie The Way of the Peaceful Warrior, which is based on a true story starring Nick Nolte, Scott Mechlowicz, and Amy Smart.  And I started to re-think the word warrior. From the book: Way of the Peaceful Warrior: A Book That Changes Lives by Dan Millman Warriors, warriors we call ourselves. We fight for splendid virtue, for high endeavor, for sublime wisdom, therefore we call ourselves warriors. ~Aunguttara Nikaya From the interview with Dan Millman, "Peaceful Warrior - From Book to Screen" page 209, at the end of the Peaceful Warrior book: Q: Why is the book called Peaceful Warrior? It's about a gymnast, not a soldier or martial artist. What does it mean to be a Peaceful War...

The other day I wrote about FM being a whipping post for the media among others ( TV show Bones uses fibro as an excuse for murder ).  After writing that post I was inspired to listen to the song Whipping Post by the Allman Brothers Band ( take your choice of the 5 minute version or the 22 minute version) and to check out the lyrics (including a nine minute video of the band, before Duane Allman died). Ah, the music of my youth.  But back to the here and now.  I was then inspired to rewrite these classic Southern Rock lyrics.  Here's the result. I been run down, I been lied to, I don't know why I let that mean doctor make me a fool. He took all my money, and my new car. Now they’re usin’ all kinds of media They’re makin’ fools of us ever’whar. Sometimes I feel, sometimes I feel, Like I been tied to the whipping post, Tied to the whipping post, Tied to the whipping post, Good lord, I feel like I'm dyin'. Some friends tell me, that I’m such a fool, ...

4/2/2016 Update:  The ALJ Disposition Data Spreadsheet has gone the way of lots of software that was state of the art; it doesn't work anymore.  You can see the statistics and comparisons on the post dated 2/26/2011 and titled The Social Security Administration does not like negative publicity . 12/17/13:  Updated all links.  Dot & her Fibro Mom's blog has been gone for years now.  They have a Facebook page but nothing has been posted there since 2011.  I hope they are doing so much better that they don't have time for blogging about illness!   2/29/12 Update:  The Fibro World Blog seems to be offline for now.  I'm leaving the links in the hope that they will be back.  That was really a great blog and I hope Fibro Dot and her Fibro Mom are OK.  I never got around to doing all of the Georgia lawyers like I said I was going to in this post.  Oh well.    I've decided to blog about my Social Security Disabil...

Bones is one of my favorite TV shows; I'll just be glad when fibromyalgia is replaced as the whipping post by some other new and little known about disease.  Unfortunately for the new disease, that WILL happen! We're getting a lot of TV time from the pharmaceutical companies, but I dream of the day when people with FM will be guests on the talk shows, the news shows, something positive about us will be portrayed on the entertainment shows and no one anywhere will dare to make a mockery of such a horrible disease.   (Yes, I know they say it isn't a disease.  It's just a matter of time.  Mark my words.)  So I watched an episode of Bones awhile ago and the murderer was a teacher who, when she was caught said she had FM and that she had pushed a guy into a poisonous fish tank because he had taken a lot of her money for a false cure to FM; then she said killing the guy must have cured her FM because she hadn't felt any pain since! Puh-leeeez! Here's the te...

Here's the Fibromyalgia is BULLSHIT Facebook page.  It has a whopping 113 people who "like" it. Those of us who are active on Facebook know that there are many FB groups (over 500) and pages (407 as of the publication of this post) that advocate support, a cure, all kinds of positive things, for FM.  There are tens of thousands of people who belong to these groups or who "like" these pages.  In spite of the fact that we outnumber this dinky little page by far, I think it needs to be removed because it contains hate speech and it targets people with a disease, people who often also have a disability.  Would FB tolerate a hate page called "Cancer is BULLSHIT?"  It's hard to even wrap your mind around the concept, isn't it? If you feel so called, please join me in asking FB to remove this page. Here are easy instructions: Go to the page by clicking here . Go to the bottom of the sidebar on the left side of the page, where it says "...

And I've decided on the spur of the moment to participate.  Last time I tried this I lasted a week.  This time I'm going the try really hard to write faster and to shorten my posts by breaking them up into multiple posts.  So we'll see how it goes.

From the National FM Association:  Update on FDA rejection of Sodium Oxybate for treatment of fibromyalgia. Here's a link to the first post I did on the topic of Sodium Oxybate for FM:  The FDA is considering approval of another new drug for Fibromyalgia that could help with sleep, fatigue and pain. Sodium Oxybate has been rejected by the FDA so I guess that's that. Some day someone will figure out why I get NO stage 3 or 4 Delta sleep at all, ever (see Finally - sleep study results! ), or they'll come up with a drug to treat the problem safely.  Until then I wait patiently, if also constantly exhausted no matter how much apparent sleep I get. I did get a nice response from the FDA to my letter of support for Sodium Oxybate for the treatment of fibromyalgia.  It's below. The response  also contains a link to a transcript of the meeting where info was presented and discussed by a panel, and to additional meeting material s. On this web page the Augu...

Mixed media Sleeping Beauty , originally uploaded by melanie_hughes *. The NFA is asking people with Fibromyalgia to email or fax the FDA a letter of support for approval of a new drug for FM.  The NFA has even provided a basic letter for us to use: there's one for people with FM who have taken the drug, sodium oxybate (generic name) or Xyrem (brand name), and another letter for people with FM who support approval of sodium oxybate but have not actually taken it themselves.  Go here to see my letter.  The NFA says on October 11 the next important step in the process for FDA approval of sodium oxybate will take place, so be sure to get your letters in before that date. I've done a lot of research on this medication, before and after I tried it.  If you are wondering some of the same things I was, maybe the information and links below will help you. An FDA panel, or advisory committee has actually already said no to sodium oxybate .  I think the actua...

Source: InvisibleIllnessWeek.com.   I added the emphasis. Laura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved! These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues. The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales , and are relying on wo...

"For the chronically ill, blogging is a powerful thing. We often feel isolated and invisible, but when we put ourselves out there in a blog, we suddenly have a voice, and we start to build a community. It does take a lot of energy, specially when you explore topics that are emotionally taxing, but the end result is worth it. I know I’m never alone in this, and I can help other people see that they’re not alone, either." Adrienne Dwello of the FM and CFS Blog on about.com , from "My Fibro Story" on the National Fibromyalgia Association's Fibro Blog In 2007 when I wrote about blogging about illness , my research was predominantly on writing about illness because I just couldn't find much information on blogging about it.  In the paragraph above, Adreinne has wonderfully summed up how blogging about illness is different from writing about it.  She's really good at that, summing things up.  Blogging about illness is all about community and the f...

This is part one of my  post for Invisible Illness Awareness Week .   It's an update to the series of blog posts I did for National Invisible Chronic Illness Awareness Week in 2007. The three posts that I wrote in 2007 are all still pretty pertinent to the topic, but as I mentioned in my last blog post (links to the three 2007 posts are there), there's a lot more being written on blogging about illness now than there was three years ago.  So I figured an update was in order.  Plus Lisa Copen, founder of II Week, suggested it as a topic. Part 1 of the 2007 series of posts was also about the mechanics of blogging.  In 2007 I referred to Jakob Nielsen's Blog Usability: The Top Ten Design Mistakes.   I still think it's  an excellent resource, with one argument about item  #10, "Having a Domain Name Owned by a Weblog Service."  Nielsen says: "Having a weblog address ending in blogspot.com, typepad.com, etc. will soon be the equiva...

National Invisible Chronic Illness Awareness Week 2010 September 13-19 National Invisible Illness Awareness Week is upon us once again.  I'm thankful for that, because I know that Lisa Copen, the lady behind it all, has had a rough year since II Week 2009 - check out her " outrigger splint ;" and she doesn't even mention the flesh eating virus she had to beat after the surgery!  The fact that the event is happening at all this year is a testament to her strength and resolve in this mission to increase awareness of invisible illness. If you're a blogger and you want to participate with a blog post you can sign up at Bloggers Unite: National Invisible Chronic Illness Awareness Week 2010 .  And if you're not a blogger you can see all the blog posts for this event in one place there. My blog topic for this year will be "Blogging About Your Illness: An Update," per Lisa's suggestion.  In 2007 I was a participant in the II Week Virtual Confe...

Well, I didn't make the 7/24/2010 deadline for this round of Bloggers Unite; I was going to find out how to make my blogs accessible to all. Silly me, I though this would be a no-big-deal kind of thing to do. Wrong. I should really learn to research these things BEFORE I make commitments about doing them. I'm living and learning, and although I'm late for the event, I wanted to at least report back what I found out. First I went to WAVE , a Web Accessibility Evaluation Tool that I found on the Blogger's Unite for People with Disabilities page, and plugged my blog's address in. That told me everything that was wrong with my blog regarding accessibility. And that's all. No clue as to how to fix it. Or if there are any clues, I'm too clueless to pick up on them. So I went back to the Bloggers Unite for People with Disabilities page and put in this comment: Any hints on how to make a site/blog 100% accessible? 16 days ago by: sherrillynn I...

From the good folks at BlogCatalog, another great blogging event: From the email I received notifying me of the event: Dear Fellow Blogger, As bloggers, you and I have the unprecedented ability to raise awareness about important issues by simply posting about them. When we act on behalf of a cause and then write about it, we dramatically increase the positive impact we can have on the world. Today, I am asking you to take action on behalf of all the people around the world living with a disability. Just like those of us who are able-bodied, they simply want to live a happy and productive life. Help us eliminate the barriers to participation and the prejudices they face every day by taking a simple action. You can donate to an organization that supports people with disabilities, sign an online petition asking for equal access, make your blog 100% accessible. Then write about it. Tell others how important it is to make all the opportunities our world has to offer accessible...

Three years ago today I started this blog; and today I'm starting another new venture as a Consultant with Ava Anderson Non-Toxic.  I'll write more about it soon, but for now here's a link to my new AANT website: http://www.avaandersonnontoxic.com/sherriljohnson I hope that if you would like to order anything from the only company in the world whose products all score a big, fat zero on the Environmental Working Group's Campaign for Safe Cosmetics "Skin Deep" Cosmetic Safety Database , that you will order from my page.  Thank you! Share this!

From Psychology Today blog, The Scientific Fundamentalist: "More intelligent people wake up late and stay up late." Why Night Owls Are More Intelligent than Morning Larks   

Sorry it's been so long since I last posted - I try to do at least one post a month and I'm overdue.  I haven't been keeping up with my email either...  Lots of reasons, nothing I can write about just yet. I'm inspired to write this evening because I chanced to open my 4/22/10 Stigmabusters Alert from NAMI, National Alliance on Mental Illness.  So much good stuff in there, I'm just going to share the whole thing with you, and encourage you to sign up for your own Stigmabusters Alerts. I especially like Joey Pants' new website NKM2 - No Kidding, Me Too!   (although there's something about Harrison Ford's earring that's just not right...)  And be sure to see if PBS in your area is airing When Medicine Got It Wrong , a documentary about NAMI's origins as a grassroots movement and founding as a national organization, including early battles a...