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Showing posts from January, 2008

Chronic Monday: Another update on the NY Times article on fibromyalgia; if the effing eff word offends you, don't read this one

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 h…

Voice Your Opinion! - about the NY Times article on Fibromyalgia

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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". I …

You've got to listen to this - radio broadcast in response to the outrageous NY Times article on fibromyalgia -

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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?

Chronic Monday on Tuesday: Update on the Controversial NYT article on Fibromyalgia - some pretty heavy hitters are speaking up for FM

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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 to…

"Stay" by Sugarland

I stopped by the good consignment store the other day, as is my wont (rapid weight gain and loss, thanks to meds with weight gain as a side effect, and IBS and major traumas that send me the other way, into rapid weight loss - which means I haven't been able to get stabilized and into a consistent clothing size since, let me see, the mid '90s, so I'm always looking for those super bargains that you only find if you look...) but I digress.

The young lady at the cash register in the consignment store jumped up and ran to turn this song up on the radio and then proceeded to sing along and it was beautiful. Then today I happened to catch the video on CMT and the lady who sings it, you just know this song happened to her and it's sad, but it's life... enjoy.



Sugarland official website

Here's Jennifer telling about this video and why she wrote the song, and a live version after:

"The inspiration for it was, I heard Reba McEntire's 'Whoever's in New Engl…

Chronic Monday: The New York Times is still using "IS FIBROMYALGIA REAL?" as a headline???!!!, plus the NAMI Peer-to-Peer Outreach Program

Dr. Nortin Hadler's "Mediicalization of Fibromyalgia" theory strikes again. I'll write more on this when I do the final post on the Revolution Health article about "getting over" FM.

Click the link to read the NYT article and to vote.

So far 71,000+ have voted and 1,910 have left comments.

I'm late with Chronic Monday this week because on Sunday I went for a 2 hour drive to take NAMI's Peer-to-Peer nine week Recovery Curriculum. The class was 2 hours, then the 2 hour drive back home. This pushed everything in my life back a couple of days, and I realized late Sunday night that to continue with the course would be pushing myself to "live outside the envelope" as they say on the CFS/FM Self-Help site, for the entire nine weeks and probably beyond that as I worked to get myself back to where I was before starting the class. I'll keep working on it and hope to be able to take the course when it's offered again later this year.

Meanti…

Made me laugh...

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From Dr. Teitelbaum's latest newsletter:

Jackie's joke—

A frog walks into a bank & up to the teller. He says to the teller, "Hey Honey, I want a loan." The teller looks down at him & responds, "First of all, my name is not Honey, it is Patricia Whack. Secondly, I can't give you a loan because we don't give loans to frogs."

After a few minutes of debate about the loan, the teller explains that for a loan, one must have collateral & frogs don't have any collateral, therefore, no loan.

With that, the frog states that he actually does have collateral & offers it up to the teller. He places a small white ceramic elephant in the teller's window.

Seeing the frog, the teller picks it up, looks at it and announces that she has to discuss this with her branch manager & asks the frog to wait.

So, the teller takes the little white ceramic elephant into her manager's office and says, "You aren't going to believe this. I have a …

Chronic Monday: A patchwork of items on CFS/FM and chronic illness for the New Year

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We made Time magazine's Top 10 Medical Breakthroughs!
#7. Relief from Fibromyalgia: Lyrica



Frances Winfield Bremer, Wife of Ambassador L. Paul Bremer, III, to Become Spokeswoman for the National Fibromyalgia Association


Biography of Frances Winfield Bremer
Frances Winfield Bremer is an American author, and the wife of former administrator of Iraq, L. Paul Bremer III. Some of Mrs. Bremer's published works include "Running to Paradise," which follows the story of a Catholic priest who is also an avid runner, and "Coping with His Success: A Survival Guide for Wives at the Top." She is also a teacher, and an experienced artist.
Source - http://en.wikipedia.org/wiki/Frances_Winfield

So, who is she besides the wife of a former Ambassador? This is what I've been able to find out:

2002 Video Interview with Charlie Rose - Notice Ms. Bremer adjusting her seating as the short interview goes on - I do this all the time when I have to sit for more than five minutes at …

Ray Charles Paint Jam

I really find it relaxing to watch this guy paint. Puts me in the right brain mood, I think. Check it out when you have 5 minutes to relax.