The ICI Experience:

God knows, you're lookin' good enough, but you're so smooth and the world's so rough. You might have somethin' to loose. Oh, no, pretty mama, what you gonna do in those shoes. Got those pretty little straps around your ankles Got those shiny little chains around your heart. You got to have your independence but you don't know just where to start. Desperation in the singles bars an' all those jerkoffs in their fancy cars. you can't believe your reviews. Oh, no, you can't do that, once you started wearin' those shoes... complete lyrics for "Those Shoes" by The Eagles at LyricsKeeper.com Check out Victoria Beckham in those CFM* shoes, with that big, honkin' bunion!!! I mean really, that sucker's black and blue! That's one of the blessings in disguise about Fibromyalgia that I've been able to come up with: If I let my bunion get that bad I would feel like I was crippled; FM keeps me from letting anything physical get too b...

You Are Worth The Time (in case you forget why it's important to create) by Jan Phillips I create. I write, I take digital photos, I blog. But I want to do more. I've been trying but can't seem to get started. It probably has a lot to do with the clutter that encompasses my life, causing me to feel even more overwhelmed than I already do as a result of life with chronic illness. So I'm going to try to kill two birds with one stone. (You'll see what I mean later, I hope. And of course I'm not really going to kill anything...) I'm going to try this Soul Journaling collage thing started by Sarah Whitmore on her blog, Caspiana . The Day 1 instructions are here . I found out about soul journaling because Karin Bartimole added me as a friend on Blogcatalog today. I can't remember exactly how I got from here to there, but the important thing is that I did. I'm quite sure it was meant to be. Anyway, Karin's blog, Beyond Words , has some st...

GREAT NEWS from the American Pain Foundation: THE U.S. HOUSE OF REPRESENTATIVES PASSED THE LANDMARK PAIN CARE POLICY ACT! full text summary (also printed below) Now on to the Senate! Here's how you can help, and it's REALLY EASY: Go to the APF Online Advocacy Center . Click Take Action and fill out the form. Click Next Step, and your senators names will be filled in. Your can email and/or print your message to the senators (you can use the message the APF has already written for you, if you want). PRESS STATEMENT For Release: September 24, 2008 Contact: Tina Regester (443) 690-4707 tregester@painfoundation.org Statement attributable to: Will Rowe, Chief Executive Officer, American Pain Foundation THE AMERICAN PAIN FOUNDATION APPLAUDS U.S. HOUSE PASSAGE OF LANDMARK PAIN CARE POLICY ACT Today’s Vote Represents Critical Step to Improving Pain Management in America Baltimore, MD—“The American Pain Foundation (APF) applauds the U.S. House of Representatives for taking a critic...

Original publication date 7/8/08 9/25/08 Update: Ergoquest Recliner Workstations ; Homemade Supine Workstation; Supine Zero Gravity Chair; Computing in Comfort I do my computer work on a laptop from a very nice recliner because the time I can sit up at a regular workstation is very finite. It depends what my pain level is on the particular day. In trying it out so I can know what to tell the SSA, I've found that the time I can sit at a regular workstation decreases with each day in a row that I do it. In other words, the more I do it, the worse it gets. I just use a tray with legs in the recliner, but it would be nice to have one of these Laptop Mount Boom Arm Workstation thingees. Although I don't know if my mom would appreciate the aesthetics (or lack thereof) in the middle of her living room... she could probably live with it if it meant I could be gainfully employed again! So anybody out there got a job you'll pay me to do from home? I have looked into it, of cour...

This song and slide show totally captures it. Written and preformed by Martin Melancon.

Crystal Beach is on the Bolivar Peninsula. It's kind of above Galveston. It's point A, like this: View Larger Map I don't know about you, but I haven't seen or read much in the mainstream media about the devastation of Bolivar Peninsula caused by Ike. The guestimates so far are that 80% of civilization on the peninsula is gone. Just gone. Poof. There were a lot of high dollar houses in Crystal Beach, most of them being vacation homes. I guess I've been getting my information from "social media technologies." I read about it on a post on a blog of social media for a PR Class, "Houston media relies on social media in the wake of Ike." Sure 'nuff, that's what I've been doing. I wasn't seeing much of anything on the news or weather channels and I was worried about my friends who live on the peninsula full time. So I went online looking for info. First I found ABC13's live video. There I heard a reporter reaming the ...

A Different View of 9/11

*Note: Your computer has to have an internet connection and you must have Windows Media Player. You can download the latest version at the Windows Media Download Site. There is a version of Windows Media Player for Mac users as well. Mac users can also download Flip4Mac for the QuickTime player . Click here for links: How to listen to a show BOOKMARK THIS PAGE - links to the shows Conference Seminar Links - from National Invisible Chronic Illness Awareness Week main website How Seminars Will Work - Register here and get some way cool goodies! Like this b-u-ti-ful bookmark: More Info You Might Find Useful, from the BlogTalkRadio folks About BlogTalkRadio What is BlogTalkRadio? BlogTalkRadio is the leading social broadcast network. We know you have something to say—so we’re providing you with the megaphone and the audience. Create your own live talk show or listen in on other shows from around the globe. Freedom of speech meets social networking. How is BlogTalkRadio different f...

Well, it's here: The schedule for the National Invisible Chronic Illness Awareness Week Teleconference , that is. It's a doosy, and I'm not just saying that. Many of the major players in the field of invisible chronic illness are included: Jenni Prokopy of chronic babe.com, Laurie Edwards of achronicdose.com, Jennifer Jaff of advocacyforpatients.org and others that I'm looking forward to hearing from and learning more about. (The links on the schedule aren't working right now... hopefully they will get that fixed soon.) Maureen Pratt , who I have quoted before on this blog ( Chronic Monday: A patchwork of items on chronic illness and the holidays ), and whose book " Peace in the Storm: Meditations on Chronic Pain and Illness " has been on my Amazon Wish List for way too long - time to buy it - will also be speaking and I'm really looking forward to that. Here's a sample of her work: Keep My Mind Focused on Good Health O Lord, I find it har...

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...