The ICI Experience:

I don't really know where to start with writing about the International Leaders Against Pain program that I attended this month. So I'm just going to jump in there and start with the "Leader's Pledge to Care". We made this pledge on the last night of the program. It is a blueprint, if you will, of what I need to do, the directions I need to take, in leading the push for awareness and treatment of Fibromyalgia. Leader's Pledge to Care We pledge to partner with the NFA to: * BE THE VOICE of millions of people suffering with fibromyalgia, and to actively advocate on their behalf for an improved quality of life. * PROVIDE PERSONAL SUPPORT to offer hope and real solutions to the life-altering challenges faced by people with fibromyalgia, and their caregivers. * CREATE AN ONGOING MEDIA PRESENCE that raises awareness, communicates facts, and changes perceptions about fibromyalgia. * PROMOTE PROGRAMS that will result in continuing medical education to help health ...

It was all quite wonderful and I'll write more about it when I've gotten organized and recovered from the whirlwind trip.

For a list of other blog posts on The ICIE about Paul Whitcomb, D.C., go here . The following is a great article by the author of the Fibro Friends website, who is also a former patient of Paul Whitcomb's. Got 'cher first hand experience right here: Anyone who has met Paul Whitcomb will attest to his charismatic personality. A big bear of a guy with a warm and friendly manner he comes across as very sincere. Fibromyalgia patients travel from all over the country and the world to be treated by Whitcomb at his chiropractic clinic in South Lake Tahoe, California attracted by the compelling stories of the success of his method described in his traveling seminar, the website stopfibro.com and in his book “Fibromyalgia; Finally Solving the Mystery”. At the clinic Dr. Whitcomb makes each of his patients feel special and cared for. He is an attentive listener, exudes compassion and has a good understanding of the symptoms and suffering of those with fibromyalgia. This coupled w...

Just a note to tell you it's all been worth it many times over. Today is the last day of ILAP 2008. As soon as I get home I'll tell you more about it and I've got bunches of pictures of the fantastic conference facility where it was held. So, to be continued...

Well, I'm sitting here by the gate waiting for my 4 p.m flight to Dulles International in Washington, D.C. where I will then be whisked away by van (hopefully - if I miss the van and have to take a taxi it will cost @ $120) to the Airlie Center for the NFA's International Leaders Against Pain media and advocacy training. My connecting flight to Atlanta was HORRIBLE. There was a sour smell to the air coming from overhead, I'm pretty sure the man next to me was passing gas, it was hot and it was cramped. The only good thing was that it was only a 38 minute flight. I don't really have anything to say - I just wanted to put a post up from the airport because I CAN - except that my suitcase weighted 10.5 pounds over the 50 pound limit so I had to pay $80 because there's nothing in there that I can't do without!!! Three days of business casual attire plus a couple of comfortable outfits and the absolute necessities of my life for a four day and four night stay and...

National Invisible Chronic Illness Awareness Week is held annually in September, and is a worldwide effort to bring together people who live with invisible chronic illness, and those who love them. This year it's September 8-14, 2008. Planning of four telephone seminars Sept 8-12 (M-F) where you can call in to listen and talk to the presenter are currently in the process. Last year I was a presenter. My topic was " Blogging About Your Illness ." It was a great experience, and there was a whole lot of worthwhile information available at the other presentations. I'll keep you posted on updates for this year's events as they develop. Love the new logo, Lisa!

Here it is, the much awaited Sleep Study. Sorry to take SOOOO long, Aviva. Some technical difficulties way too boring to go into, but mostly my own procrastination. First, in case anyone wants or needs a refresher on the first two parts of this post - Part One: Sleep Study Last Night Part Two: Chronic Monday: Sleep (Not!) - Some practical help in overcoming sleep disorders And without further ado... Click on the picture for the jumbo view. First, for the sake of comparison, this is a nice chart of how the sleep cycle is supposed to go: In Stage 1 sleep the brain transitions from alpha waves (waking) to theta waves (drowsy) and conscious awareness lowers. During Stage 2 or light sleep, muscular tone/activity lowers and conscious awareness disappears. It normally accounts for 45% to 55% of total sleep and is followed by delta waves, stage 3 slow-wave sleep and stage 4 deepest slow wave sleep . Go here for another good description of the stages. My sleep study showed that I never EVER...

I was cleaning out my drafts - or trying to anyway - as of right now there are 121 of them! And I accidentally posted two unfinished drafts on sleep. Then I went out of town for a few days and didn't even know it until a couple of days ago. So now I'm just polishing up the longer one, which will be the final post on my sleep study and it should be up for real soon. RE: the fact that after cleaning out my drafts I still have 121 of them, I don't know what to tell you. I'm going to try to stop adding new drafts every time I have an idea, and get the existing drafts down to a reasonable number like say, 15 or so. I can't imagine that I'll ever have writer's block. My problem seems to be more like diarrhea of the written word. That can be a problem too. I lose my focus on the purpose of this blog. So here's to getting organized!

Note: click any photo to see the larger version. I attended these events today at Blogher '08 in Second Life: DAY ONE, Friday July 18th (PDT) 1.) 9:00-9:15 AM, Welcome to BlogHer '08 from the Westin St. Francis Ballroom in San Francisco - This was streamed live from the real life (RL) event. The picture quality sucked but the audio was fairly good. Compared to what came later, anyway! 2.) 9:15-10:15 AM, "Speed Dating" for BlogHers in Second Life - this was a go-round-and-intro-yourself-thing. We were also supposed to ask about each other's blogs. I found myself having a much grander time taking pictures of all the interesting characters. See below. In SL you can get right up in someone's face and take their pic and they don't know it. heh heh. 3.) 10:30-11:45 AM, Second Life Break-Out Session #1: The Intersection of Blogging and Second Life - I totally misunderstood the meaning of the title of this session. I think I took it literally. What the...

There's an excellent collection of posts at Grand Rounds (the best of the medical blogosphere, weekly), Vol 4, No 42 - The Seinfeld Edition One post in particular touched me, probably because I am also one of THOSE people. Oh yeah, and because this lady is dying and our country can't figure out a way to take care of her while she is still with us. From The Cushing's Disease Journey, Not Dead Yet: It is too bad my last extension of COBRA insurance ran out in May. I finished testing to prove that the recurrence (or never-cured) remains to be dealt with. *POOF* Endgame. Uninsurable . High risk insurance pool only covers 70k. My pituitary can poop bigger than 70k! Now I am one of those people. The uninsured. The chronically ill. The unemployed and too apathetic to bother hiring a lawyer to go after my 5+ years off work with Social Security. Apathy. Yes apathetic, I think that is where I am. On a lighter note, also from this volume of Grand Rounds - did you ever see Elaine da...

Click the picture to see it bigger. Thanks to Chronic Babe for turning me on to Wordle.

In light of my current situation (details later), this post seemed appropriate. I've been twittering and blog hopping this happy doc for a few weeks. He has lots of interesting things to say, he's funny, he obviously likes his dogs and he's working on this project that I'm starting to submit my EOB data to. So send him your humbled benefits... "None of your personal information will ever be divulged should you wish to share your medical expenses with the world, to let them know how much you are paying. Should others like this idea, it could provide a spring board to competition and cost control. Who knows. We'll see where this goes. If nothing more than just pure curiosity." From Dr. Happy's blog: Wednesday, December 31, 2008 Explanation Of Benefits Do something good for others. I doesn't get any easier than this. The next time you go to the docs office, get lab drawn, get an xray or go to the hospital, save your benefit form fro...

I'll write more about it tomorrow. I'm OK but I need to rest today.

Created with fd's Flickr Toys . Check out the June Pain Blog Carnival on the How to Cope With Pain Blog , for lots of great articles on vacationing with chronic illness.

Right now, at the G8 summit Japan, Canada, and the United States are blocking discussion of targets for reductions of greenhouse gas emissions. Our friends at Avaaz.org are taking out an ad in the Financial TImes tomorrow and have started a petition demanding responsible leadership - the ad is funny, but the situation couldn't be more serious. Click on the ad to see it full size. Click on the title of this blog post to sign the petition. How many people have to become chronically ill or die before we take effective action?

I've been getting ready for Blogher '08 in SL. I'm going to try to check out the remaining free CNN classes on citizen journalism (see below). And I've got all my bling - my CNN cap, my "Click To See My Blog" button (yep, you just click it and a small screen shot of that person's blog comes up on your screen), and my Blogher '08 t-shirt. Check these sites for the scoop on the CNN iReport thing going on in Second Life: CNN.com iReport Trains BlogHers For Citizen Journalism and CNN SL iReports website. For general info check the Blogher '08 in Second Life blog posts by Queen Tureaud. The iheartsl.com Community Blog is an excellent place to check out some of what goes on in SL, especially the FASHION. I have my party dresses ready for the cocktail parties, too. If you're a newbie to SL, go here to download the software and for all kinds of pertinent info. Blogher is also ready and willing to help you: BlogHer '08 in Second Life is f...

My first ICIE blog post was May 19, 2007. I should be able to remember that because it's my brother's birthday. So Happy 1st Birthday to the ICIE, + 47 days. Raw, succulent veggan carrot cake Photo (and yummy food) courtesy of Bee Green Natural Foods Market , Albany, GA

I quit smoking 4 years ago today. Since then I've had NOPE (Not One Puff Ever). I used QuitNet for free support and they're still sending me nice emails like this one: Hello Sherril Johnson! Your Quit Date is: Sunday, July 04, 2004 at 8:00:00 AM Test Time Smoke-Free: 1460 days, 21 hours, 13 minutes and 59 seconds Cigarettes NOT smoked: 7304 Is this still your Quit Date? Yes No ...