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Showing posts from August, 2009

My Interview with Lisa Copen, founder of National Invisible Chronic Illness Awareness Week

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Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people get to know about the event and how it can specifically encourage you.


Hi, Lisa. Thanks for connecting with us here tonight at The ICIE blog.
LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.
Yes. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week.

LC: Often I refer to it as just Invisible Illness Week or…

Sleep Haiku*

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i do want to sleep
but i cannot do it right
please do not blame me





Dedicated to my mom, who in spite of her best efforts, cannot understand the difference between a sleep disorder (no stage 4 sleep AT ALL) and a lack of good "sleep hygiene."

But she's not the only one; this article, Fibromyalgia and Sleep, which as I'm reading it I'm thinking totally "gets it", ends with "For tips on good sleep hygiene, read "Fixing Sleep Problems May Help Prevent Fibromyalgia."" Sheesh.

There are good folks on the trail of real answers. I just wish they'd hurry up already.


Click the pic for online access to or for a DVD of the conference.


*Haiku =
5 syllables in the first line.
7 syllables in the second line.
5 syllables in the third line.

"54 Ways You Say You Respond to “You look so good!”", compliments of National Invisible Chronic Illness Awareness Week and Lisa J. Copen

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It's almost that time of year again - National Invisible Chronic Illness Awareness Week, September 14-20. Be sure to mark your calendars - it was a great conference last year, and an even better one is shaping up for this year. Plus, you can go in your pajamas if you want to.



I thought the results of last year's Invisible Illness (II) Poll "Hate to Look Great?" were interesting and Lisa Copen generously shares all of her articles, so I'm reprinting it here.

How do I respond to the "You look so good" comment? Well, I'm lumping the "How are you?" question in with the "You look so good" comment here, because the former is what people tend to ask me. "I'm hanging in there" seems to be my standard response (it's #1 - must be the standard for lots of people) , but I really don't feel like that response is satisfying. In the future I might try some of "The 54," or a variation thereof... maybe add "…

Herniated cervical disc - Oh my!

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A couple of blog posts ago I mentioned the results of recent MRIs of my neck and brain (What do The Tough do when they get ANOTHER ICI diagnosis (or two*)?).

Last month I had an appointment with a spine specialist to see what might be done about the herniated cervical disc diagnosis that was made from the MRI of my neck. This doctor seemed like a nice guy, and after about 10 minutes and $280 he had me convinced that my next step should be to have the herniated disc replaced with an artificial one. He started rattling off information after we exchanged pleasantries; lucky for me I knew to have pen and paper handy, and I can translate rattle into scribble pretty well. To his credit, he used mostly words that I could understand, or at least spell.

He did a short exam on my hands and arms and said good - no loss of strength.

Then he told me about something called "anterior cervical discectomy", an operation performed on the upper spine to relieve pressure on one or more nerve ro…

Patients for a Moment: A blog carnival for US!

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Well, I'm a little slow at getting on this band wagon - you'll have an idea why after my next blog post - but there's this cool thing happening called Patients for a Moment. Read all about it from the blogger who created it, on Duncan Cross.

They're already up to the fifth edition, so if you're like me and you haven't even started reading the included blog posts you have a lot to look forward to.

This is HUGE: "Fibromyalgia zealot loses chiropractic license"! - Paul Whitcomb and the Fibromyalgia Relief Center are gone for good.

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This particular crusade is over, and with a fair ending. Paul Whitcomb, D.C. and the Fibromyalgia Relief Center in the U.S., South Lake Tahoe, California are no longer able to take advantage of unsuspecting people with Fibromyalgia.

I'd like to thank everyone who helped make this happen by spreading the word and by sharing their experiences about Whitcomb and the Center.

This is from the Consumer Health Digest (CHD) #09-32
August 6, 2009
(CHD is a free weekly e-mail newsletter edited by Stephen Barrett, M.D., and cosponsored by NCAHF (National Council Against Health Fraud) and Quackwatch.)

Fibromyalgia zealot loses chiropractic license.

The California Board of Chiropractic Examiners has revoked the license of Paul Whitcomb, D.C., who claimed to have developed a unique method for curing fibromyalgia. In November 2008, the board accused Whitcomb of incompetence, gross negligence, and unprofessional conduct, based on his management of seven patients. The accusation states that he (a) ad…