The ICI Experience:

Mom says “You look sick, you REALLY look sick. Maybe if you did not take all those medications You would not be so sick.” I am not sick because I take medications. I take medications because I am sick. Mom says “So they’re going to blame ALL THAT on the environment?” Heavy metals, toxins, pesticides, viruses and chemicals in the foods we consume. How could these things NOT be affecting us? Mom says “Why is it that all you read is stuff about your physical problems? Maybe concentrating on them to the exclusion of everything else Could be adding to it. ( Or Causing it? )” I am not sick because of the books I read. I read the books because I am sick. Mom says “Well I just think that you focus on every little pain and problem you have And maybe if you didn’t it wouldn’t be such a problem.” I am not sick because I think about the pain and the problems. I think about the pain and the problems because I am sick. Mom says ...

I'm going to try committing to post once a week instead of on Mondays. I've been behind for a couple of weeks now and maybe this will work better for me. And for you, too! I saw the new commercial a couple of weeks ago, don't know what channel I was on, but what caught my attention was when they were saying "Would you believe me if I looked like I felt?" and as the camera moved, dark bruising appeared on her arms, then on her legs then, on her neck. It really REALLY hit home with me because over the years I've often tried to explain how FM feels by saying that when certain areas are touched, it feels like I have a really bad bruise there (at tender points), but in reality there is nothing visible. Can we have a zoom on those bruises? Yah, that's getting there! View the new commercial here . Click on View Commercial/Play Video in the lower right corner. I have a wait a couple of minutes for the whole thing to load or it doesn't play right or c...

There are three facets to the NFA's Caring By Sharing Campaign : The NFA has done a good job of getting the initial information out early this year. But in the Sharing Awareness program they're still saying "Check back soon for free materials, such as templates for press releases, facts about fibromyalgia and sound bites, to assist you in telling your story." It's getting late for people with FM to be getting started on this type of thing. Hope they'll get this stuff out soon... They're also still saying "Hold a "Take the Fibromyalgia Pledge to Care" event (more information coming soon!)" in the Sharing Facts program. I don't know about you, but it's too late for me to be taking on anything of this magnitude now, a mere 60 days before the event... I'm late with Chronic Monday this week because I've been busy packing stuff up to put in a U-Haul and take to a storage facility in the Savannah area. We're boxing up ...

The Winter Soldier Preview Video is below. It's long, about 17 minutes, and parts of it are graphic. I have to ask myself this question when it comes to events like this: If I can't bear to watch a few photos of what's really going on in this war, then how can I expect my brother or my nephew to actually participate in it? The memory of these photos will subside rapidly from my memory; the pictures of these scenes will probably be burned indelibly into the memories of those I love who are required to participate in them. That's why I watch. How does this subject relate to the topic of this blog? Briefly, when my friends or family are active duty military, I think of war in much more personal terms. Not to whine but just stating a fact, this causes me a lot of stress. We all know that stress affects our illnesses in many ways, most of them negative. The other way the war relates to the topic of this blog is that it is producing lots and lots more people with ICI: ...

I've had the drop dead stomach flu this week, complete with fever, chills, cramps, nausea and diarrhea. So my hard drive sits on the floor in much the same position it was in last week. Today is the first day since last Tuesday when I came down with the crud that I've been able to eat real food or do anything productive at all. So the Sleep Study scan remains inaccessible. But the Gods have smiled on me and made this week National Sleep Awareness Week. What a perfect lead in to the actual study next week! I know, I know, kind of anti-climactic, but what else can I do? I will tell you that the study showed that I got no - that is zero - Stage 4/delta sleep in the 6.5 hours that I slept. Stage 4/delta sleep is the deep, restorative sleep where the body rejuvenates itself. The NFA page on Sleep Awareness Week says: It is estimated that 90-95 percent of people with fibromyalgia experience disordered sleep. In addition, non-restorative sleep was cited as one of the most severe symp...

I think this poem is quite good. It is reprinted with permission of the author, who also has a book out, Call for Soulwork (CFS, get it?), and a website by the same name. But first - something caused me to take my desktop computer down yesterday, which I've been meaning to do for months now in order to move the hard drive and make more space on the desk. Soon after I got it all unplugged and moved to the floor I realized what an incredible mess the cords were, and that I was going to have to take the rest of the office down (Mom's computer, the printer, various devices that enable us to surf the net at the speed of sound and to network our computers) in order to put my hard drive where I want it. No, too late to put it back the way it was. I unplugged everything and tried to put the cords where they will need to be, right before I had the revelation about what it's going to take to put it right. Now it will be just as much work to put it back as it will to go ahead ...

Apparently the NY Times CAN review it's own controversial article and decide it was indeed fair. At least they put this one on the OPINION page! The Doctors Are In. The Jury Is Out. by Clark Hoyt, NYT Public Editor and Readers' Representative "The public editor serves as the readers' representative. His opinions and conclusions are his own. His column appears at least twice monthly in this section." More drivel from the NYT. At least this one isn't (very) sarcastic. He's supposed to be the "readers' representative," huh? I'd be willing to bet that the readers he has heard from about the original NY Times article on Fibromyalgia were of the opinion that the article was pretty far away from being a "balanced presentation." So what readers is he representing, anyway? He quotes one reader and pulls the same stunt Berenson did by placing quotes around one word of Lynn Mantelleana's statement; thereby questioning the credibil...

I have the report of my sleep study and I've had the appointment with the rheumy who ordered it. Finally. I'm going to put it all online soon. I think you will find it very interesting. You just have to laugh about it sometimes: What do you get if you cross an insomniac agnostic with someone who has dyslexia? A person who stays up at night wondering if there is a dog. Made me laugh. I found Shara Rendell-Smock's website, Go To Health! (Because Life's Too Short...), because she used the same book I'm using , No More Sleepless Nights , by Dr. Peter Hauri of the Mayo Clinic. This book and the companion Workbook seem to be the Bible of sleep for the layperson. I got them both, used and in excellent condition from Barnes and Noble for $5.88 each, including postage. Shara goes through all the common facets of sleep hygiene, and she put the Sleep Log from the first edition of the book online. I plan to do an updated Sleep Log, and will post it as soon as I...

I am flattered and honored to be included with such talented and creative people as are in the 'Blog Roll 100' Chronic Illness Blogs. Thank you, Diane!

I've been called to action by my church . If I was able to go to the Interfaith Peace Witness in Washington D.C. on March 7, I would. In leiu of that I will stop enabling the war with my own silence. “A time comes when silence is betrayal, and that time has come for us.” Dr. Martin Luther King, Jr. Olive Branch Interfaith Video Posted February 13th, 2008 by stan I speak out now for these Principals of the Olive Branch Interfaith Peace Project: Our principles Posted January 25th, 2008 by OBIPP 1. End the U.S. war and occupation of Iraq and support peace with Iran. 2. Support our troops. 3. Support an Iraqi-led peace process. 4. Say NO to torture. 5. Say YES to justice.

Yay Amy! From the Newsweek intro: HEALTH TRIUMPHS A Healing Blog A shocking diagnosis of type 1 diabetes transformed my life. But, using the Internet, I turned it into a business—and formed a new community of friends. By Amy Tenderich | Newsweek Web Exclusive Jan 25, 2008 | Updated: 3:58 p.m. ET Jan 25, 2008

Spirituality and Practice is offering an e-course that looks really good, "Practicing Spirituality during Illness," from March 24 - May 2, 2008. Subscribers to the course will receive an email on each of the 40 days of the course: ...each with a passage from the wisdom of writers who have contributed greatly to a spiritual understanding of illness, teachers such as Rachel Naomi Remen, Ram Dass, Jean Shinoda Bolen, Kat Duff, and Mary C. Earle. Each email will also suggest a simple way you can incorporate the lesson into your daily life. Subscribers will also have access to a private Practice Circle, which is bound to be an important part of this experience. In this user-friendly online forum, you will be able to interact with people from all over the world, sharing your own healing stories, the lessons of your illnesses, and the blessings of caregiving. We'll also compare notes on what we've learned from the daily practices in the course, thus grounding the content in...

I just finished the book... and now I find out it's going to be a television series starring these three lovely ladies. Yes, that is Brooke Sheilds. "SERIES PREMIERE tomorrow, Thursday February 7th 10/9c - "Pilot" - Movie Exec Wendy Healy, Editor-in-Chief Nico Reilly, and Fashion Designer Victory Ford are modern New York career women supporting each other through triumphs and tears that are all part of making it in the Big Apple." See the video clip at the end of this post. I think the book was great chick lit. I'm looking forward to the series. WARNING: THIS MIGHT BE A SPOILER (I.E. IT MIGHT SPOIL PART OF THE BOOK FOR YOU) From the book: "Men are just frightened little people with penises attached." This from Wendy, in her pep talk to Nico when Nico was having second thoughts about the wisdom of getting her boss, Mike, fired. The boss cried, then he called Nico a bitch and Viktor's (Mike's boss') "little hand maiden."Nic...

I know I said last week that I would let this NYT article thing go, but I can't. It's just not time yet. I will lighten up, though. This post has only good things that I've come across in my research of what's being written about "The Article." All you peeps who have some other CI than Fibromyalgia, I hope you'll bear with me here. I mean, try to imagine what it would be like if an institution like the NYT were writing these kinds of things about your illness... First up is Daily Strength. I think I'm really going to use this site. I've already made some friends in the FM group (one of whom is getting a letter writing campaign started on The Article - more to come on that), and they have this Goal Setting thing that you can use to track your progress toward achieving that goal. Your friends on the site can send encouragement your way, and you can even send email to others telling them of your goal, or put a link to it on your blog like this...

OK, now that everybody's writing about it, it's beginning to seem like just a lot of words. I'm going to let it go with a few choice excerpts from Rosemary at Sophy's Journal. Which is really hard because every word of her post is GREAT. I so get a charge out of every reading. I'll guaran-darn-tee ya, ya won't be bored by her "venting" letter to the author of the NY Times article! Excerpted from Open Letter to Alex Berenson of the NYT, in regards to Drug Approved. Is Disease Real? Fuck you. Seriously. It's not like those of us living with fibromyalgia get enough scrutiny already about whether or not we're "really" sick, or have to put up with crap all the time from doctors who call us drug seekers and insurance companies who don't want to cover our medications or the government who won't give us the benefits we direly need and rightly deserve or anything. What we really really needed was some asshole who didn't do his ...

I got the excellent information below from the FM Network . The FM Network has been around for a long time, since 1988. When I was diagnosed with FM in 1989, there was a grand total of one book on the subject available at my library. It was a good book, but all I remember of it is that it was written by a doctor and the comparison of having FM to the life of Job from the Bible, and to the fairy tale of the Princess and the Pea. When I found the FM Network Newsletter on the internet, it was my first proof that there were others going through what I was. Anyways, the FM Network is still around, bigger and better than ever, a continuing source of "ad-free, reliable information on the treatment of fibromyalgia, coping advice, and research from experts around the world." I must say I prefer the way the FM Network is handling this whole affair to the way NFA is handling it as evidenced by President Lynn Matellana's article titled "Time to Move Forward". ...

Radio broadcast discussion of controversial NY Times article on fibromyalgia, includes representatives of all the major factions: Frances Winfield Bremer, spokesperson for the National Fibromyalgia Association, was the featured guest on the The Diane Rehm Show. Other guests: Dr. Nortin Hadler, Professor of Medicine and Microbiology/Immunology University of North Carolina at Chapel Hill Attending Rheumatologist, UNC Hospitals. Alex Berenson, reporter, author of the New York Times article on FM. Dr. Patrick Wood, researcher and clinician specializing in fibromyalgia, Chief Medical Officer of Angler Biomedical Technologies; Chief Medical Advisor for the National Fibromyalgia Association. I have an opinion of this radio broadcast, of course, and I will share it with you. After I get some sleep. What do YOU think about it?

Firefly Cafe watercolor by Brian Mann Sorry to be late with Chronic Monday again - I got to go to Savannah over the long holiday weekend that is close to my birthday - thank you Dr. Martin Luther King! We ate at the Firefly Cafe , which is most excellent. I had that great Southern traditional dish, Shrimp and Grits. Then we did a little bit of house looking in the historic district. Mom and I are looking for a house with some kind of rental unit included. Then it was on to the shopping! It was a wonderful trip, marred only by the severe sleep problems I am having - the only sleep I had the night before this great adventure was in the car on the way to Savannah. I was very tired but the only other consequences of my sleep deprivation the night before were that when I came out of the bathroom in one of the malls I wandered straight into the men's room. And of course there was a man coming out at the same time, to add to my embarrassment!; and one time I came close to trying ...