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July 22, 2006
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Editor: Mary McKennell

The newsletter has been on a short hiatus while I was in the midst
of house renovation and recovering from a flare episode.  As usual I
have a little story to tell.

I have read a book recently by Joan Didion called The Year Of
Magical Thinking.  It is an excellent book on the subject of grief.
The book centers on how she lived for the first year after her
husband died and her daughter became seriously ill.   The concepts
that she talks about I think work for how we deal with chronic
illness as well. 

She makes the comment: "I know why we try to keep the dead alive: we
try to keep them alive in order to keep them with us.  I also know
that if we are to live ourselves there comes a point at which we
must relinquish the dead, let them go, keep them dead."  I think
that we slip into this magical thinking in our journey with chronic
illness.   Pretending that one can function the same as you did
prior to developing a disabling chronic illness only leads to a
health crisis of some type.  There has to be a point at which we say
that the previous way of life no longer exists, grieve over it and
move on.  Although it is a process that has to be done periodically
as your health changes for the better or for the worse.   I believe
that one has to acknowledge that one's previous level of functioning
is never going to return and that you need to live well even if you
can't get well.  Getting stuck in the grief cycle and focusing on
what used to be is not part of living well.

I have a medication/supplement regimen that works well and enables
me to continue working full time.  I have a treatment regimen and a
fairly good idea of my energy limits.  If I deviate from these
routines I have problems and end up taking two steps back. 

We recently replaced all of the carpet and other flooring with tile
in our downstairs area.  We spent quite a bit of time looking at
"fibro friendly" flooring. We did not want anything that was too
slick, nothing that would hold dirt in little crevices, and nothing
that felt like a pumice stone. It turned into quite a project!  My
husband did the demolition work a month before the actual tiling
work took place.  We were experimenting to see whether tile would be
too difficult on my legs and feet.  Walking on concrete for a month
was a fairly good simulation of what tile would feel like.

I love the new look and it certainly makes the house much cooler.
We rearranged the furniture and created a lovely oasis for rest and
conversation.  It has been delightful to sit in this spot for a bit
at the end of my workday.  I somehow acquired the strange notion
that I had regained my Wonder Woman status and was capable of doing
housecleaning myself.  I slipped into this magical thinking that I
was suddenly capable of doing more simply because we had new
flooring.  So I did not call the cleaning service to come back in.

Nothing has changed about my health status and my work status. I
still have the alphabet soup list of things wrong with me.  I still
work full time.  I still live in a 2400 square foot, two-story house
with 4 bathrooms.  Why I thought that having tile downstairs meant
that I could suddenly handle the housekeeping again is a mystery to
all who know me.  My rationale was that it would save money to not
have a cleaning service and that would be a good thing.  I am a fan
of FlyLady who can be found at and try to use her
principles to deal with the clutter in my life.  I was thinking that
I have the system, I just need to make it work right for me.  Surely
I can do at least 30 minutes of housework each evening.

My husband questioned my sanity but decided that I needed to figure
things out for myself. One fibro friend said that I was being a
martyr.  Another one said that I was crazy.  Then there was the
incident about 3 weeks ago that really sent me into a major flare.
I had set the dustpan on top of one of the trashcans. It fell off.
I slipped on the dustpan and splatted on the (tile) floor. I was
not very agile in my younger days and never conquered doing the
splits, so the fall was not graceful and hurt quite a bit.  Even
then I did not call the cleaning service back! I was still
determined that I could do this.

Well I cannot do it!  Flylady has great concepts but they do not
work well for someone with a disability.   She says that you can do
anything for 15 minutes.  In order to work, I have to come in the
evening and flop.  I deal with dysfunction, death, dying and tragedy
day in and day out.  It makes me tired.  I do not have much left for
my household tasks.  I need my energy for dealing with the clutter
that no one else can take care of.  I have the good fortune of being
able to afford someone to clean my house.

 Once again I am learning how to live in the limits of my energy
quotient and accept them.  It means that sometimes I have to skip
doing something I would really like to do if I do not have a
recovery day available.
I cannot borrow tomorrow's energy for today's tasks.  Therefore I
have to skip a friend's big birthday bash tomorrow as it would
entail a 2 hour drive each way and I cannot take Monday off from
work.  The reality of that restriction stings.

 I will close by reminding you all that as chronically ill people we
do not deal with the heat well.  I was out doing errands today and
felt like the heat was literally sucking the energy out of me. I
drove by the downtown thermometer and it said it was 119 degrees!
(Yes that is a record for my area, although we are used to triple
digit days.)  Perhaps you are dragging and have not really taken
into account what the weather is doing to you. Be careful out there
and be extra kind to yourself during this heat wave that is
assaulting the country.  And yes, I am calling the cleaning service
Monday to come back in. I am quite puggled out, as they say in


Genetics May Play Role in Chronic Fatigue
Chronic Fatigue Syndrome: When Exercise Makes You Feel Worse
Report questions FDA's safety procedures
Pitching Relief
In search of pharmacoeconomic evaluations for fibromyalgia
treatments: a review.
Guidance for Fibromyalgia Patients who are having Elective Surgery
Listening To Music Can Reduce Chronic Pain And Depression By Up To A
Cinnamon extract may help blood sugar
Know Your Learning Style!
A new kind of breast cancer.
In the Blink of An Eye
Does this sound familiar?

Genetics May Play Role in Chronic Fatigue
ATLANTA (AP) -- Chronic fatigue syndrome appears to result from
something in people's genetic makeup that reduces their ability to
deal with physical and psychological stress, researchers reported

The research is being called some of the first credible scientific
that genetics, when combined with stress, can bring on chronic
fatigue syndrome-- a condition so hard to diagnose and so poorly
understood that some question whether it is even a real ailment.

Researchers said the findings could help lead to betters means of
and treating chronic fatigue syndrome and predicting those who are
likely to
develop the disorder, which is characterized by extreme, persistent
exhaustion.  "The results are ground-breaking," said Dr. William
Reeves of the Centers for Disease Control and Prevention.

The entire article can be read at:


Chronic Fatigue Syndrome: When Exercise Makes You Feel Worse
By Howard LeWine, M.D.
Brigham and Women's Hospital
Chronic Fatigue Syndrome

The Importance Of Perceived Exertion
The Exercise Prescription

The television advertisement shows a young woman running
hard and sweating profusely, smiling but appearing
rejuvenated. You might go out and try this yourself.
Rather than feeling great, you may find that you are
pooped later that day, and still tired the next day.
"Just do it" didn't do it.

Not everyone gets a boost from strenuous exercise.
This is especially the case for people with chronic
fatigue syndrome (CFS). Instead of positive physical
and emotional sensations, any overexertion often makes
their symptoms temporarily worse.

 Read the complete article at


Report questions FDA's safety procedures
By Rita Rubin, USA TODAY

The Food and Drug Administration "lacks a clear and effective
process" for
managing postmarket drug safety issues, says a Government
Accountability Office report out Monday.

The report was requested in late 2004 by Sen. Charles Grassley,
R-Iowa, chair of the Senate Finance Committee, and Rep. Joe Barton,
R-Texas, chair of the House Energy and Commerce Committee.

Concerns about how the FDA handled high-profile drug safety cases -
two wereVioxx, the painkiller linked to heart attacks and strokes,
and antidepressants,linked to suicidal behavior in children -
spurred the request.

"GAO observed that there is a lack of criteria for determining what
actions to take and when to take them," the report states, noting
that FDA
officials, given a chance to review a draft, called its conclusions
"reasonable" but did not comment on its recommendations.

In an interview Friday, Grassley said the report backs up "what
everybody seems to know, that the FDA needs reform, that things that
go on in the FDA don't really protect the consumer. The FDA is kind
of a Good Housekeeping seal of approval on drugs, and really, it's
questionabl(whether) they should have that honor."

In a statement, Barton said the GAO "shows that the drug-safety
system is not in crisis, but the FDA's process may need some
fine-tuning. Prescription drugs approved by the FDA should keep you
out of the hospital, not send you to one."

Grassley and Sen. Chris Dodd, D-Conn., introduced a bill a year ago
calling for an FDA Center for Postmarket Drug Evaluation and
Research that would be on an equal footing with the existing Center
for Drug Evaluation and Research, or CDER.

Find this article at:
Pitching Relief

A Physician With Firsthand Knowledge About Pain Advocates
Opium-Based Drugs Despite Fears of Abuse
By Marc Kaufman
Washington Post Staff Writer

Howard Heit knows pain.  He lives it, he studies it, he works to
reduce it. His own pain used to get so bad that he wore patches of
hair off the back of his head by rubbing it hard against walls in a
desperate effort to get some relief.
"What I was feeling was like a cramp in my leg, but multiply that by
100 times and make it continuous," he now says. He no longer hurts
like that, but he still wears a brace with a head attachment he can
push against for acupressure when a pain spasm hits.
Heit is a doctor. Today he's a pain and addiction specialist in
Fairfax, but once he was an up-and-coming gastroenterologist, a
football player, a jock. That was before his auto accident, the one
that changed his life and taught him about pain problems the very
hard way -- as a patient who often didn't get the help he so badly
The doctor still spends a lot of time in his wheelchair, but that
hasn't stopped him from becoming a prominent practitioner and
lecturer over the past decade. More recently, his profession and
personal history have propelled him to the center of a contentious
national dispute that he virtually personifies.
On one side, the Drug Enforcement Administration and Justice
Department -- alarmed by the seemingly widespread diversion of
opium-based prescription drugs such as OxyContin and Dilaudid to
addicts and abusers -- have investigated, arrested and prosecuted as
"drug dealers" scores of pain doctors who allegedly misused their
authority to write prescriptions for narcotic painkillers. On the
other side, many pain doctors and patients have protested the DEA's
approach as overly aggressive and punitive, saying that it's
unfairly penalizing pain patients.
The article continues at:


In search of pharmacoeconomic evaluations for fibromyalgia
treatments: a review.

Expert Opin Pharmacother. 2006 Jun;7(8):1027-39.

Robinson RL, Jones ML.

Eli Lilly and Company, US Medical Division, Outcomes Research, Lilly

Corporate Center, Indianapolis, IN 46285, USA.

PMID: 16722813
Fibromyalgia is characterised by chronic widespread pain of unknown
aetiology and affects approximately 2% of the population. It can
significant patient disability, sizeable economic costs, complex
decisions and controversy for healthcare providers. In lieu of
approved treatments for fibromyalgia, patients may try multiple
pharmacological and non-pharmacological therapies with questionable
efficacy. The literature lacks pharmacoeconomic studies that balance
cost and benefit of interventions.

In the absence of this work, cost outcomes are reviewed in this
paper. Due
to inconclusive results, further study is needed on fibromyalgia
cost-effectiveness. These analyses could provide useful information
policy and evidence-based practice guidelines toward optimal disease

management. Medical professionals should be a driving force in
understanding the clinical and economic challenges of fibromyalgia.


Rehabilitation Programs for Individuals with Chronic Fatigue
Syndrome: A Review

Journal: Journal of Chronic Fatigue Syndrome, Volume: 13 Issue: 1,
Page Range: 41-55 [2006]

Author: Renée R. Taylor PhD

Over the past two decades, a small but growing number of
programs for individuals with chronic fatigue syndrome (CFS) have
initiated. The aims of this paper were to review existing literature
these programs, to compare and contrast findings emerging from
and outpatient programs, and to comment on the rigor and quality of
methodologies used in outcomes research in this area.

The studies reviewed herein varied widely in case selection
program intensity, length of participation, program content, and
variables measured. Moreover, many were limited by selection bias,
absence of valid and reliable measures, and the absence of a control

These limitations made it difficult to draw definitive conclusions
regarding the effectiveness of any single approach to rehabilitation

(whether inpatient or outpatient). However, there is some
evidence that both inpatient and outpatient rehabilitation programs
lead to improvements in physical and occupational functioning,
perception of symptom severity, improved quality of life, and
resource acquisition-at least for certain subgroups of individuals
CFS that participate in specific types of programs.

Taken together, these preliminary findings support the need for
funding and support for the development of comprehensive
program centers that include both inpatient and outpatient programs
follow-up sessions and ongoing evaluation. Recommendations for
program development and outcomes research in this area are

 [Note: The full text of this article is available for a fee at

It is also possible that your local library can help you obtain a
copy via one of its inter-library loan programs.]


Guidance for Fibromyalgia Patients who are having Elective Surgery
If you are having a major surgical procedure there are some issues
that you may wish to discuss with your surgeon and anesthesiologist
that could reduce the "fibro-flare" that often occurs after surgery
in fibromyalgia patients.
1. Request that you wear a soft neck collar and minimize neck
hyperextension (if an endotracheal tube is anticipated).
2. Request that your arm with the intravenous line be kept near your
body, not away from your body or over your head.
3. Request that you be given a pre-operative opioid pain medication
- about 90 mins. prior to surgery. Opioids are morphine or morphine
related drugs. The rationale for the pre-operative use of opioids is
to minimize "central sensitization" - as this inevitably worsens the
widespread body pain that you are already experiencing.

4. Ask to have a long-acting local anesthetic infiltrated into your
incision - even though you will be asleep during the procedure. The
rationale for this is to minimize pain impulses reaching the spinal
cord and brain, which in turn drive central sensitization.
5. As a fibromyalgia patient you will need more, and usually longer
duration, of post-operative pain medication. In most cases opioids
should be regularly administered or self administered with a PCA
pump (patient controlled analgesia).
6. Most fibromyalgia patients require a longer duration of
post-operative convalescence, including physical therapy in many

Listening To Music Can Reduce Chronic Pain And Depression By Up To A
Listening to music can reduce chronic pain by up to 21 per cent and
depression by up to 25 per cent, according to a paper in the latest
UK-based Journal of Advanced Nursing.
It can also make people feel more in control of their pain and less
disabled by their condition.
Researchers carried out a controlled clinical trial with sixty
people, dividing them into two music groups and a control group.
They found that people who listened to music for an hour every day
for a week reported improved physical and psychological symptoms
compared to the control group.
The participants, who had an average age of 50, were recruited from
pain and chiropractic clinics in Ohio, USA. They had been suffering
from a range of painful conditions, including osteoarthritis, disc
problems and rheumatoid arthritis, for an average of six and a half
90 per cent said the pain affected more than one part of their body
and 95 per cent said it was continuous. Before the music study,
participants reported that their usual pain averaged just under six
on a zero to ten pain scale and their worst pain exceeded nine out
of ten.
This article continues at:

Cinnamon extract may help blood sugar
HANNOVER, Germany (UPI) -- A water-soluble cinnamon extract has been
shown to reduce fasting blood-sugar levels in patients with type 2
diabetes, according to German researchers.

University of Hannover researchers say this was the first study
evaluating the effect of a water-soluble cinnamon extract on
glycemic control and the lipid profile of Western patients with type
2 diabetes.

The placebo-controlled, double-blind study was designed to determine
the effect of a water-soluble cinnamon extract on glycemic control
and cardiovascular risk factors in patients with type 2 diabetes. A
total of 79 patients with type 2 diabetes not on insulin therapy but
treated with oral medication or diet therapy were randomly assigned
to take either a cinnamon extract or placebo capsule three times
daily for four months. The cinnamon capsule contained 112 mg of
water-soluble extract, an equivalent of 1 gram of cinnamon powder.

The cinnamon-extract group experienced a reduction in fasting plasma
glucose levels -- 10.3 percent -- vs. the placebo group -- 3.4

The findings are published in the European Journal of Clinical

Copyright 2006 by United Press International


Know Your Learning Style!
Provided by
The Self-Improvement Site for Women
Article by Dianne Schilling
People learn in different ways. Just as we prefer different hair
styles, clothing styles, managerial styles, and music styles, we
also feel much more natural and comfortable acquiring information in
ways that fit our preferred "styles" of learning.
In his landmark 1983 book, Frames of Mind: The Theory of Multiple
Intelligences, Harvard educator, Dr. Howard Gardner, strongly urged
that we replace the notion of one kind of intelligence--measured by
IQ--with a recognition of at least seven different kinds. He
categorized them as linguistic (verbal), logical-mathematical,
bodily-kinesthetic (using physical movement), musical, spatial
(visually oriented), interpersonal and intrapersonal (independent).
According to Gardner, each type of intelligence has its own
particular neurological pattern and, to a great extent, this has
been confirmed by research in the behavioral and brain sciences.
Most of us learn by blending several styles, but we usually prefer
just one or two. Think of it as "smarts." Are you: word
smart----number smart----picture smart----body smart----music
smart----people smart----or self smart?
Knowing your preferred learning styles can help you choose a career
or make a career change, acquire new information faster by setting
up optimal learning situations, choose satisfying leisure
activities, identify compatible relationships with less trial and
error, and explain yourself to others. Use the following checklist
to identify your preferred styles--then start managing learning
situations to your best advantage:
If you are a Linguistic Learner, you:
value books and like to talk about what you've read
"hear" words in your head before speaking or reading them
have a good memory for names, places, dates and/or trivia
enjoy word games, puns and tongue twisters
are a good speller
have a good vocabulary
write well
communicate with others in a highly verbal way
If you are a Logical-mathematical Learner, you:
are curious about how things work
mentally compute measurements and formulas
enjoy logic puzzles, brainteasers and games of strategy, like chess
look for rational explanations, think logically and seek logical
feel more comfortable when something has been measured, categorized,
analyzed, or quantified in some way
like to experiment in a way that uses higher order cognitive
thinking processes
have a good sense of cause and effect
If you are a Spatial Learner, you:
draw or doodle
read charts, maps, and diagrams more easily than text
enjoy artistic pursuits
see clear visual images
have a strong sense for colors
often have vivid dreams at night
enjoy taking (and looking at) photographs or movies
can get around easily in unfamiliar territory
can comfortably imagine how objects appear from different angles
prefer reading material that is heavily illustrated
enjoy doing puzzles, mazes and similar visual activities
If you are a Bodily-Kinesthetic Learner, you:
are physically active and enjoy the outdoors
excel at one or more sports/athletic pursuits
find it difficult to sit still for long periods
like working with your hands
enjoy taking things apart and putting them back together
have a need to touch things when learning about them
are well coordinated
need to practice skills by doing them rather than simply
reading/hearing about them
If you are a Musical Learner, you:
sometimes hum,sing or make tapping sounds while working
enjoy listening to music on radio, cassette, or CD
can tell if a musical note is off key
may play a musical instrument or sing well
find music enriching
know the tunes to many different songs
have a good singing voice
have a rhythmic way of speaking or moving
If you are an Interpersonal Learner, you:
enjoy socializing with others
are sought out by others for advice and counsel
enjoy group games and sports
prefer to talk over problems with another person, rather than
solving them alone
have at least three close friends
seek the company of coworkers both during and after hours
show leadership ability
are an active member of one or more clubs, committees or other
If you are an Intrapersonal Learner, you:
are strong willed and independent
are self-directed and prefer working alone
are interested in learning more about yourself
at times may say or do things that others have difficulty
may be a loner
have strong opinions about things
have a rich inner life
have high self-esteem
When you have identified one or two preferred modes of learning, use
that knowledge to structure learning situations that favor your
style. For example, to learn a foreign language a linguistic learner
might concentrate on vocabulary, using books and audio tapes; a
logical-mathematical learner might put more emphasis on rules of
grammar; a spatial learner would respond well to lots of
illustrations, photos and films; a bodily-kinesthetic learner might
decide to enroll in a total immersion course abroad; a musical
learner would do well to play background music when studying and
learn songs and poems in the foreign tongue; an interpersonal
learner might seek a highly interactive classroom situation; and an
intrapersonal learner might work alone with audio tapes or CDs.
Provided by
©Copyright 1996-2003 by All rights reserved

A new kind of breast cancer.

Please watch this video
Copy and Paste URL into Browser.

In the Blink of an Eye   
You've been staring at your computer screen for hours. Now your eyes
are as dry as sandpaper. Coincidence?

Not remotely. The muscles you use to squint are the same ones used
to blink. And most of us frequently squint at computer screens,
consciously or not. When you're squinting, you're not blinking
normally, so your eyes aren't getting the lubrication they need.
This won't cause any long-lasting damage, but it's uncomfortable.
RealAge Benefit: Actively patrolling your health can make your
RealAge as much as 12 years younger.

The following essay has floated around the Internet for a few years.
 I have no idea of the original source of this.  Enjoy.

Does this sound a bit familiar???

When you have to visit a public bathroom, you usually find a line
of women, so you smile politely and take your place. Once it's your
turn, you check for feet under the stall doors. Every stall is
occupied. Finally, a door opens and you dash in, nearly knocking
down the woman leaving the stall. You get in to find the door won't
latch. It doesn't matter.

The dispenser for the modern "seat covers" (invented by someone's
Mom, no doubt) is handy, but empty. You would hang your purse on the
door hook, if there were one, but there isn't - so you carefully but
quickly drape it around your neck, (Mom would turn over in her grave
if you put it on the FLOOR!), yank down your pants, and assume "The

In this position your aging, toneless thigh muscles begin to
shake. You'd love to sit down, but you certainly hadn't taken
time to wipe the seat or lay toilet paper on it, so you hold "The

To take your mind off your trembling thighs, you reach for what
you discover to be the empty toilet paper dispenser. In your mind,
you can hear your mother's voice saying, "Honey, if you had tried to
clean the seat, you would have KNOWN there was no toilet paper!"
Your thighs shake more.

You remember the tiny tissue that you blew your nose on yesterday
- the one that's still in your purse. That would have to do. You
crumple it in the puffiest way possible. It is still smaller than
your thumbnail.

Someone pushes open your stall door because the latch doesn't
work. The door hits your purse, which is hanging around your neck in
front of your chest, and you and your purse topple backward against
the tank of the toilet. "Occupied!" you scream, as you reach for the
door, dropping your precious, tiny, crumpled tissue in a puddle on
the floor, lose your footing altogether, and slide down directly
onto the TOILET SEAT. It is wet of course.

You bolt up, knowing all too well that it's too late. Your bare
bottom has made contact with every imaginable germ and life form on
the uncovered seat because YOU never laid down toilet paper - not
that there was any, even if you had taken time to try.

You know that your mother would be utterly appalled if she knew,
because, you're certain, her bare bottom never touched a public
toilet seat because, frankly, dear, "You just don't KNOW what kind
of diseases you could get."

By this time, the automatic sensor on the back of the toilet is so
confused that it flushes, propelling a stream of water like a
firehose that somehow sucks everything down with such force that you
grab onto the toilet paper dispenser for fear of being dragged in
too. At that point, you give up.

You're soaked by the spewing water and the wet toilet seat. You're
exhausted. You try to wipe with a gum wrapper you found in your
pocket and then slink out inconspicuously to the sinks. You can't
figure out how to operate the faucets with the automatic sensors, so
you wipe your hands with spit and a dry paper towel and walk past
the line of women, still waiting. You are no longer able to smile
politely to them.

A kind soul at the very end of the line points out a piece of
toilet paper trailing from your shoe. ( Where was that when you
NEEDED it??) You yank the paper from your shoe, plunk it the
woman's hand and tell her warmly, "Here, you just might need this."

As you exit, you spot your hubby, who has long since entered, used
and left the men's restroom. Annoyed, he asks, "What took you so
long, and why is your purse hanging around your neck?"

. . .This is dedicated to women everywhere who deal with a public
restroom (rest??? you've got to be kidding!!). It finally explains
to the men what really does take us so long. It also answers their
other commonly asked question about why women go to the restroom in
pairs. It's so the other gal can hold the door, hang onto your
purse and hand you Kleenex under the door.

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