Elly's Gratitude Group
for those experiencing
Chronic Fatigue Syndrome, Fibromyalgia, & Orthostatic Intolerance
Selections from Email Meeting Summaries 2006
December 25 and 29, Conference Calls
December 4 The Gilbert Clinic, Maryland
November 29 Conference Call
November 1 Conference Call
September Conference Call
September 21, The Gilbert Clinic, North Bethesda, MD
August Conference Call
August Woodbridge, VA, Meeting
July Conference Call
June Leesburg, VA, Meeting
April Conference Call
February Conference Call
January Fairfax, Virginia, Meeting
Some other EGG Pages
Sign A Guestbook of Gratitude (AGOG)
2005 EGG Summaries
Main EGG Page
Gratitude is a heart healing energy and one can
use it to reclaim space
from anxiety, fear, grief, anger. Many times it
is easier and a necessary step
to work with gratitude before one can
heal the wounds surrounding love.
What is EGG?
Elly's Gratitude Group, or EGG, is a discussion group for people with
CFS, FM, OI and similar conditions, eager to use attitude, mind, and
spirit along with physical approaches for healing. It's a discussion
group to practice acceptance and changing willingly, to use language in
new ways to uplift the self and others, to bolster one another in
difficult circumstances, and to sharpen the skill of finding silver
linings in nasty storm clouds. We know about the conditions, so we can
cut to the chase of support and encouragement.
Practical suggestions thrown in as a bonus.
Fri Dec 29, 5 p.m. EST, Conference call
Also Monday 12/25. No Summaries so far. Nice meetings!
Monday Dec 4, 4-7 p.m. EST, N. Bethesda clinic meeting and Cheesecake Factory after.
Great pre meeting
lunch Pow-wow with the founder of Pain Connection. 2 great cheesecake
factory meals. Toni and I really enjoyed ourselves. Lots of good,
Wed Nov 29, 6 p.m. EST, Conference call
Herb Update & Nov 29 EGG Teleconference Summary
- by Elly Brosius with help from Toni Marshall
EGG (Elly's Gratitude Group) is
a mind-body-spiritual discussion group meeting nationally through
conference calls and in-person meetings in MD and VA for people living
with CFS, FM, and OI.
By acknowledging the mind and spirit components of life and illness,
we in no way diminish the profound and often debilitating physical problems
of people with CFS, FM and OI. Instead, we offer a new context for discussing them.
Music & Mental Processing
As first person on the call, I was offered some great hard-swinging big
band hold music. Immediate fun and gratitude remembering big swing jazz
as the music of my youth, playing saxophone in various school jazz
bands, enjoying the fox trot and jitterbug in the Ballroom Dance
Club. My conditions not only sidelined my dancing and playing, my
conditions forced me give up listening to all music for many
years. There were multiple reasons. Sometimes even familiar
songs were just too hard to follow, the music too much complicated
stimulation. Sometimes, I couldn't even handle simple songs as
background music because they demanded so much attention, I couldn't do
anything else. Simple, familiar music prevented me from rest,
talk, remembering what I was doing. Often, the emotional pain of
having given up listening to previously pleasurable melodies was too
great, and so, off went the stereo, TV, radio.
Listening to music in the car isn't something I lost like so many
people with chronic fatigue syndrome (CFS), fibromyalgia, and/or
orthostatic intolerance... because I never had it. I learned to
drive at 18 when I was already a veteran of many weird bacterial/viral
infections and experiencing a big stress load. I was never
comfortable multitasking in the car. If I was the driver, I
wouldn't let people talk, and wouldn't even let others in the car with
me most of the time. I rarely enjoyed the car radio.
Singing, badly, some lines from the ethereal version of Over the
Rainbow by Hawai'ian Iz Kamakawiwo'oli during last month's EGG call
inspired me to download the song and describe my own musical
history. Always a singer, encouraged by mother and relatives,
sang for Jimmy Dean, the country singer, when I was six, learning the
new Sunday School songs from my aunt, the music director, in order to
lead other children's singing, always in the school chorus, never a
soloist, usually a leader, and several years of different chorale
experiences as an adult. I love music.
But not lately. Any music at all often causes feelings of
desperation, changing channels while feeling like screaming or
desperately needing to escape, feeling like there's a gremlin trying to
punch its way out of my body.
Imagine my recent shock upon awakening to Jay Leno's tv show weeks ago,
wondering what in the world was the wonderful sound I was
hearing. It was the last 5 minutes of Leno's show. "You Are
Loved (Don't Give Up)" sung by Josh Groban was like heaven, a reaction
to music rare for me over the last 10 years. I isn't just
Groban's voice, which is lovely, nor the words which, out of context of
the music, seem too sentimental for me, the arrangement and small
string orchestra I find impressive. It is the sum of all the
parts. Somehow, I can't hear it often enough, playing it for
hours, without interruption, while at my computer. ("You are
Loved" is on the CD, Awake.)
I wonder if my continuing herbal treatment is responsible for this
impressive improvement in my ability to listen to music. More on
that another time.
One trick for relearning the ability to listen to music - if you learn
a song or group of songs on a CD well enough, the brain doesn't have to
work as hard to process it. Some people may be able to hear only
songs with words while others may be able to handle only instrumental
music. If familiar enough, and if there is no overwhelming emotional
charge attached to it, your mind and brain may handle music just fine,
without producing symptoms. There was a 2 year span in my history
when I needed only one CD. I enjoyed it each and every time. I think it
was a swing Christmas CD! I still like it. It can be a real money saver
to need only one song or one CD!
Elly's herbal treatment update
For about two years experience of music has changed for me. Two years
into a chinese herbs/counseling combo program has made it possible for
me to enjoy music again. Even loud, even as background. Not
every day, but most days. I am still actively healing, working
through old body, mind and soul issues. During big healing days,
I devote everything to healing, or it demands my attention and I may
not feel as well. When that phase is completed, I definitely see
and feel progress. I'm still taking no prescription medications,
no supplements! I only take a tiny piece of OTC allergy medicine a few
times a day.
Still, I've struggled with paperwork. So a funny thing happened on a
good day this week - I began filing a lot of medical paperwork. And
when I got to the medication claims folder, there was nothing
add! Up to and including 2004, my medications claims folder was
quite full. Now, my file of "things not covered by insurance" aka
tax deduction folder gets most of the paper. I've submitted
claims all along, but, this week, I organized medical paperwork for the
first time in two years. I may not do more for awhile, but I did some!
It may be, even though you never had certain abilities, or, may have to
give up some things that irritate or agitiate you (wheat, dairy, other
foods, music, flickering light sources, certain crafting projects,
filing, ...), it may be temporary (a year, 6 years, 10 years). It
is possible to regain or find new capabilities. I'm living
example. I gave up wheat for 6 years, now I eat it with no
problems. I gave up music, now I can listen to it. I gave
up sitting up playing card games at a table....Thanksgiving Day, I lost
17 straight hands of Kings in the Corner. I don't care about
losing. I was sitting up, playing well, enjoying the snacks,
conversation and, especially, feeling okay.
Some people were under the false impression I'd finished Gilbert's
herbal treatment. Rather, I've been in treatment continuously
since 3/27/04. I don't always take herbs. Most people take
them every day. Sometimes, I am so welcoming to the mind -
emotional - soul part of healing and don't need to push my body to heal
using herbs. Sometimes, healing keeps happening. Prescribed
herbs can accelerate healing or healing may happen on its own or from
other kinds of holistic modalities. It doesn't feel like what I thought
healing would feel like, though! Be open to surprises. Sometimes a
healing opportunity feels like frustration! Even when I am not on
herbs, I am in contact with herbalist Jonathan Gilbert to report progress and problems and receive encouragement.
Sam Makoul has been my spiritual /
stress management counselor for over 2 years. Sam is a
fantastically supportive witness to my story. He sometimes
provides elusive clues I need about the spiritual nutrition right for
me. After 13 years working with Sam as my food sensitivity and
supplement guiding nutritionist, I've been able to wean myself from
nutritional supplements over the last 2 years. We cover more than
physical nutrition in our sessions as much anymore. His masters in
Many people who report recovery from CFS or FM state they are not
exactly sure what one thing helped which symptom leading to
recovery. I'm fortunate to know and feel what has helped.
Its been extraordinary, though not easy by any standard, to feel and
observe the changes through my work with prescribed herbs, my work with
the team of CFS/FM focused professionals herbalist Jonathan Gilbert and
counselor/nutritionist Sam Makoul and, most importantly, the work I do
in between appointments on my own and processing life events with
friends in a new way...
EGG really helps with changing perspectives
Me (Elly), Toni, Nina, and lets call her M - all regular EGG members
have progressed through seeing and talking in new ways. The
physical world offers help for what ails us: science, logic,
products, drugs, supplements. We are all grateful for physical
help we've been able to use, namely the foregoing and mattresses, sleep
aids, convenience foods, meds, strategies that get us through our days
and nights better. The physical world, physics, may be only the
My husband and I, both physicists, recorded a science/physics/astronomy
program on TV Saturday called "96% of our Universe is Missing." They
stated 96% of matter which is evident based on stars and galaxies we
can see, current theories and more is missing. The missing matter has
been generally assigned the name "dark matter." The matter in
black holes isn't enough to explain what's missing. When feeling
philosophical, I project this as a clue that most of what I needed to
consider in my universe for real healing was missing for a long time,
the physical world is only a percentage of what is. Working
with consciousness, mind, soul, spirit, purpose, meaning certainly
exists in our world, but it's tricky to see it, weigh it, measure it! I
sometimes joke the word measure is about me-asure, me - assuring. I've
grown comfortable with not measuring much anymore or certainly not in
the same way as I did in science classes.
Recovery Stories - a new section on our website
There are people with severe CFIDS who have recovered. Some don't
know why. Some talk about treatments that worked. See our
website for a variety. Some say recovery happened only through a deep
emotional, spiritual look at themselves, through desiring change,
becoming someone new, rather than remaining, returning to who they were
before illness. D. Patrick Miller wrote about his story in a free
A Healing Journey Through Chronic Fatigue Syndrome
- "Uncanny coincidences began to occur as I learned to trust both my intuition
and the logic of the illness itself."
- "As my desperate hold on something inside myself relaxed,
I recognized for the first time exactly what anxiety was by its absence."
- "CFS taught me that I needed to develop multiple points of view on life."
- "I became ill in part because my mind and body needed to regain the
spiritual energy I had known as a child."
- "My recovery did not begin until I surrendered my pride, defensiveness,
- "What I was not aware
of was what I now recognize as “deep stress”: the
fundamental and substantial tension of maintaining and defending the
personality I had built for myself by my early thirties. This
personality carried a great deal of unexplored, unexpressed resentment
and sadness that had been invisibly sapping my vitality for years.
Those suppressed emotions showed through in my personality chiefly as a
sarcastic fatalism about life. Inwardly, I was often beset by circular
and repetitive worries, although my calm demeanor mostly concealed this
stress from other people." ---D. Patrick Miller
I have an "extra" appointment at The Gilbert Clinic tomorrow - the kind
which is scheduled when things aren't going as well. I sometimes
say it like this now, "things aren't going so well, which means they
really are going well!! The problems give me so much to work with!"
From about March this year, I took a break from herbs, beginning herbs
again in August. The first two jars went smoothly. I took a low
dose for a week, felt some old energy move around and leave and then
went up to the full dose. In October, a slight change was made to
my formula, to make it even more gentle, but, I've been having a really
rough time with big reactions. This is the 3rd time I've taken two jars
smoothly, has a slight change to it, and have had a big reaction. That
gave me a clue, too, but it took me til long after it happened to
figure it out why that was important for me.
Because of the work I've been doing with web site changes and group
emails, it may not be obvious to others how difficult the last weeks
have been, but I've felt it and its been tough. People may be
oblivious when you are doing worse. Lowering the dose of herbs
and honoring the difficulties of the process of release and renewal,
especially some depression, is helping. I had two periods in one
month with PMS almost everyday! I don't blame the herbs nor do I
want to stop taking this batch of herbs. My intuition tells me to
continue. Sometimes I follow my intuition to stop.
Sometimes I listen to and trust the intuition of others if theirs feels
stronger and I'm feeling confused by my own. I'm moved to thank
these herbs for moving some old stuff which made me feel sicker, feel
stuff I couldn't access in another way. I have depression in my
past. Cognitive therapy helped and so did 5 HTP, something the
body can convert to the amino acid tryptophan. I haven't needed
5HTP for almost 2 years, feeling up and motivated most of the
time. I've experienced feminine problems in my past. Now is a
safe time and place for me to look at these past problems with new
eyes. Our support groups help create that safety and support.
It's been important I don't expect healing to be easy, fast, or
And now back to the EGG Call - a place of free and freeing discussion.
One first time caller was "T" from Bishopville, MD. She really
liked the e-mail Toni sent about the non-traditional ways to spend
holidays. She was relieved to know others are enjoying holidays
outside of a "normal" image. It seems we need permission to be
different. My, are we different! Yet, we still want to fit in,
feel included, by doing what "everyone else" does in ways that are
expected. As Dr. Phil would say, "How's that workin' for ya?" One
thing I really enjoy about our list and our emails is that so many
suggestions we offer each other are about doing things the way that
work best for us individually, and about celebrating the
"T" talked about how very isolating CFIDS is to live with, how hard it
is just to go to lunch with a friend. This led to others offering
reasons why it is hard to go to lunch:
-it's hard to sit upright and still without OI symptoms or stiffness;
-it's hard to listen and pay attention and speak at only appropriate times;
-it's hard to comment on normal subjects like current events, work, sports;
-it's hard for others to comment on our roller coaster medical adventures;
-it's hard to respect our food issues
-it's hard to embarrass other people when asking the ingredients of everything;
-it's hard when you may have to cancel, leave early, arrive late, get lost;
(We gave these examples of lunch difficulties.
"T" was immediately grateful she had none of these specific difficulties.)
She told us of the frustration of having two young children and the
youngest one not getting the same active Mom as the older one got. And
then she told us some special silly time in bed on sleeping-in days
with the youngest one. That's really special. We all celebrated
Nina offered a poem to "T" and the group. She heard it from a friend
with severe CFIDS, now living in acceptance and peace. Nina wrote it up
for us later, "My CFIDS friend in Baltimore & her husband read
this poem each Saturday night. They arrange the food beautifully
on the plates and have flowers, if available. And she takes
pictures of everything as another way to celebrate that moment."
The clouds above us join and separate.
The breeze in out courtyard leaves and returns.
Life is like that so why not relax?
Who can stop us from celebrating?
(Known as The Sage of Tea; wrote books on Tea and Fine Water)
(Found one reference, this poem was in Tao of Pooh, by Benjamin Hoff)
Nina sent us these nested meditations from Katrina Meditations in Spirituality & Health Magazine Sept/Oct 2006. She found them surprising and very powerful:
How can this suffering be?
How can this suffering be a gift?
How can this suffering be a gift? Rip it open.
How can this suffering be a gift? Rip it open, and the heart floods with compassion.
We are all one.
We are all one step from the edge.
We are all one step from the edge of the annihilation.
We are all one step from the edge of the annihilation of all hatred.
More in Spirituality and Health magazine in The Practice of Nested Meditations.
(These require free account login).
A new positive voice
"M" told us she'd had a really rough day. A real big
stress hit her. Instead of letting it play over and over in her
mind, she was able to take action and find out the information she
needed to move through it. This 'take action' is new, easily
paralyzed by symptoms, fear and stress before, and she credits her
practicing a new attitude and approach to living. She also gave
us a specific list, grateful for:
- having a voice in her head that stops and neutralizes the negative thoughts!!
Didn't used to have that;
- the yellow pages listing attorneys that give 30 minutes free consultations;
- taking action leading to learning a problem she feared would happen imminently
wasn't going to happen.
- having parents to live near,
having discovered a mutual need for each other at this point in time.
- having the feeling of looking forward to moving near her parents.
"M: also talked about her efforts to "live from the heart" more.
Interesting, after several months of that, she now has new
heart/circulatory symptoms. She had 3 episodes, each lasting a long 4
days. The last time with palpitations and a tight chest, she was
convinced she was having a heart attack. In the ER, she was told it was
mitral valve prolapse syndrome/ dysautonomia. I welcomed her to
the MVPS club - she has already been in the POTS/CFS club. I offered,
while these may feel like new symptoms, and it may be she had big
enough to notice symptoms because she's been trying to listen to her
heart more and let her heart express itself more. Opening
oneself to one's own heart may allow that which was buried inside
to surface. "M's" new practice of gratitude has led to a
positive, encouraging voice in her head that may be interfering with
worrisome thoughts as her heart feels safe to express itself.
Palpitations and chest tightness feel scary, so having them checked out
You have chest tightness, too?
The phrase chest tightness brought some discussion. In a call of 9
people, two more people experience a tight chest feeling and both
described it as feeling like an elephant on their chest. One said the
elephant was sitting there, the other said it felt like the elephant
was standing on all 4 trunk feet. I never felt it as an external
pressure. I usually just felt like my lungs, my ability to move air was
only strong enough for one breath, then my chest, ribs, lungs would
feel like sinking in on themselves again. Not feeling satisfied
with the breath we get is another description. Does this sound familiar
"I in Hawaii" expressed gratitude for being awarded her SSDI and for
the help she got from Elly, Toni, and our website articles on the
topic! She won her SSDI benefits on the first try! That's
the second person this week who's won SSDI benefits on the first
application. Congratulations! She also expressed gratitude for
all the public awareness campaigning for CFS and astonishment that 80%
of the people with CFS still don't have a diagnosis.
"MC" from southeast VA made it to her first EGG meeting. She and I have
been emailing, too. I've condensed some of our back and forth from the
call and emails here:
have any tips on a mattress for Back, hip and knee pain? We have
bought 3 this year and none seem to help. Even the
It was nice just to listen
in on the Conference. To hear people who understand,
talking. As opposed to those "who don't get
it." I have to watch my minutes on my cell phone. Look forward to
joining in again,
Anything you can pass along
to help with "Insomnia." I do relaxation excercises throughout the day.
I've been told my "Auto Immune system" is at full throttle!!!
I have pretty much cut out
caffeine. Of course Diet coke, which I have been told the
[acesulfame] Potassium causes bone brittleness, as well as the
Aspartame is used as a bug killer in Candada!!! Wow!! So
it's green tea for me now. Yes, the green tea has caffeine.
I'm slowly trying to get rid of all caffeine. But need
something to get me moving in the am.
My husband is recently back
from deployment. We have a child. Today's a gorgeous day here.
Hope to move back to quiet Newport RI. Its noisy
here. We live on a descending [aircraft] path.
I can't really drive anymore
when I'm "exhausted. " The other day I rolled/tapped the
person in front of me at a red light. "Brain fog" NO
damage to him, 2 dings to my bumper. So we both went on our way!!
I'm trying to work through
the loss of being a "Career Women" let alone now a fininacial as
well as physical burden. I did some volunteer work over the
holiday weekend. But even just a couple of hours. Left me
exhausted. I helped out at homeless shelter at the first
aid station. As I am an RN nurse.
I also have questions
about helpful things for "Insomnia" and night pain. Also
night sweats. Nutrition for CFS.
Have a good day, -MC
Elly wrote back:
gut reaction to the way you wrote about mattresses is... If 3 don't
help, including the tempur-pedic, then your body is really, really
trying to get your attention! Now. It doesn't want you to wait to
figure things out, but I give another mattress link later, just in
case. Some ways to listen to a body:
Knees can be about issues of flexibility and moving forward.
Also they can be about only bending one way.
Back issues can be about support, standing up in structure.
Hips can be about balance, left (female) and right (male) balance.
Mattresses are about a safe place, a soft place to be.
Pain is often talked about as having to do with guilt and self-punishment.
One suggestion is to take a
piece of paper and for each place of pain, write the most detailed
description of the pain - where it is, the first time you felt it, who
were you or are you with when it emerges, does it come and go? is it
worse in cold?, where were living when first started, the effects of
each product tried, drugs or supplements. Then, gently thank that
part of your body for storing so much information. Ask for the
symptoms to subside some since you've written them all down, giving
them importance. Express the difficulties getting help with such severe
symptoms. If you experience relief, honor the deliberate communication
with your body with gratitude.
For physical relief, perhaps the CuddleEwe Mattresses and Pillows could help:
For night sweats, taking a
regular or baby aspirin before bed has helped others and it worked for
me on occasion. However, I wouldn't do it long term because of
the possible side effects.
For insomnia, in my book,
nothing beats slowly increasing Chelated Calcium and Magnesium
Supplements - but must be taken at least 4 times a day - When you feel
stressed, you body dumps them again real fast and they are water
soluble. They don't hang around like fat soluble substances.
Source Naturals brand is good for finding them individually rather than
in combination. I never had much success taking them as a combo! And
they kind of do different things, both being calming to the nervous
system. The phrase / rule of thumb I've heard used and which worked for
me is "More calium helps you fall asleep, more magnesium helps you stay
asleep (if waking up often and fall back asleep again.)."
When I took 250 mg Calcium (as an individual thing, not part of any
multi, 4 times a day, and 100mg Magnesium chelated 7 times a day, I
could fall asleep and stay asleep. There was a little extra of each in
my multi-vitamin. Magnesium lets you know when you get too much
because you get loose bowels - A clue to cut the dose a little. One
lady in our group had to take 1350 mg Magnesium a day before she could
sleep, another took 1,100 mg per day before she was able to relieve
constipation. Magesium also helps relaxation which relieves the
pain of being so tense. If you decide to try Calcium and
Magnesium, I recommend potassium, too, one with each meal and
immediately upon waking up as a start. I am not a nutritionist.
You'll have to assume the risk and responsibility of following these
suggestions. SNcatalog.com and our Amazon Associaties store carry these. The prices given are for 12/11/06:
Source Naturals Magnesium 100 mg, 250 Tabs - Amino Acid Chelate, $7.13
Source Naturals Calcium 200 mg, 250 Tabs - Amino Acid Chelate, $11.06
Source Naturals Potassium 99 mg, 250 Tabs - Amino Acid Chelate, $7.64
Also known as SourceNaturalsCatalog.com, sncatalog prices are:
Magnesium - $7.13
Calcium - $7.52
Potassium - $7.64
Smaller bottles of each are available! The potassium is potentially
helpful with anxiety, heart skipping and double beating, muscle cramps
and spasms, regulating blood pressure. Very helpful for people taking
herbs (licorice) and drugs (florinef) that promote potassium loss.
Small amounts, more often a good approach for it, too.
Mary's going to order a Cuddle Ewe mattress. She hopes it will help her husband's back pain, too.
Relaxation, learning to relax, practicing relaxing for months before it
started to work was a topic. "M" reminded us there are many
techniques and reasons why relaxation is so valuable for people with
CFS and FM in the June 2006 book
Fibromyalgia and CFS: 7 Proven Steps for Less Pain and More Energy
by Fred Friedberg, PhD.
Fred has CFS and is a CFS and FM researcher and clinician. He's a
psychologist and has also written about emotional healing with EMDR,
eye-movement desensitization. He will be speaking about Lifestyle Balance for Less Pain and More Enegy on April 5, 2007, in Bethesda, MD, at a co-spondered event by us, The NoVA CFS/FMS Support Group, and Pain Connection.
There are 2 book reviews, including one by me at Amazon. You can vote
if you think it helpful or not. Add your own review if you are working
with the book. There was a favorable review in Oct 2006 The Townsend
Letter: Here's an excerpt:
"...In this cogent book, Friedberg has successfully erased the line
separating mind and body. His advice can open avenues for health
improvement for anyone suffering with CFS/FM, especially for those who
have previously rejected any treatment involving the psychological
aspects of these illnesses."
----Katherine Duff, author of a CFS classic, "The Alchemy of Illness"
"M" has been practicing active relaxation. Its taken her 6 months, but she can really feel a difference now. Its helping.
Contributions from our other Callers
There was so much other stuff on the call. I want to mention a little from each caller.
Celia wrote us - "It was good to connect on the EGG call
yesterday! I was pleasantly surprised that you were all still
there when I called in about 7:15 pm. I ended up hanging up w/o
saying goodbye - bodily functions calling - you understand, I know. I
hope to make it to some part of Monday's EGG activities."
Yup, I heard Toni and "I in Hawaii" were still on the phone at 9 PM!!!!
Bethany gave us a tip for making the computer screen easier to look at.
Make the background dark brown and make the letters beige. She changes
it for outgoing emails and printing but it makes it easier on her eyes
the rest of the time.
Bethany also expressed gratitude for and help by allowing her sleep
pattern to just be what it needs to be. Not having to get up for
someone else's schedule is quite the blessing.
Toni expressed gratitude for her 7 years after bankruptcy expiring this
month. Just in time to buy a needed car. And we learned about
Toni's future son-in-law's father, whom she's never met, heard news
reports about the gov't's backing CFS research, finding it important
enough to leave his son a message about it. The public awareness
campaign is working!
Someone asked about the amino acid testing and therapy program from Minnesota by Marty Hinz, MD, described at http://www.neuroassist.com
(877) 626-2220. The rest of us had never heard of it. Has anyone tried
it successfully? She has been on it a couple of months and feels it is
helping some. She'll keep us informed. Here are a few web pages that
mention Dr. Hinz.
Another view, from pro-amino acid therapy author of The Mood Cure & The Diet Cure in The Townsend Letter Oct 2006, Fibromyalgia: Too Tired to Go to the Ball
Urinary Neurotransmitter Testing: Problems and Alternatives
by Julia Ross, MA, MFT
Based on her own clinical
practice and reports from other clinics, this author concludes that
urine testing for neurotransmitter levels is often off-base, leading to
incorrect assumptions regarding amino acid formulations and,
consequently, unsatisfactory treatment. She surveys the problems she
sees with urinary neurotransmitter testing and offers viable solutions.
Just before the meeting, I discovered there are many, many songs with
the title "Thank You." I thought there was only that Wayne Newton
song, Danke Shoen! I found a song entitled "Thank You" by a
person with CFS and MCS, Susan Abod (http://www.susanabod.com). It is recorded on her CD "In the Moment." (Amazon). Susan also created a CFS documentary film, “Funny, You Don’t Look Sick: Autobiography of an Illness.”
She sings a song called "Say a Prayer" by B. Rose, Rhianon, and P
Weinstein, on her CD. These words from it moved both me and Toni:
Some have called you crazy
And some have hurt your pride
Not one voice embracing
The song you hold inside
Sing out in the dark
Reach out for a spark that's getting
Ready to flame
Make your claim to the morning
The hush of early dawn
Is waiting (right there) for your song when you
Say a prayer
Out in the open air
Just when that old despair comes into view
You just say a little prayer for you
No one says it quite like you
So say a little prayer just for you
Read about Susan at Immune Support:
Living In the Moment:
One Creative Woman’s Journey with Chronic Fatigue Syndrome and MCS
And finally, the Heartmath Quote from 11/29/06 was by Jacques Maritain, in
Reflections on America (1958)
"Gratitude is the most exquisite form of courtesy."
Wed Nov 1, 5 p.m. EST, Conference call
This call included
singing and live playing of sample of song on iTunes. Everyone
remembered to announce the end time so people could hang up with
closure. The call went longer with several people and then a couple
more hung on after Toni hung up. Elly had to miss this call with an
emergency trip to the veterinarian for Tazz' eyes.
Fri Sep 29, 3:30 p.m., Conference call
This was a small call,
but still lots of fun. There were problems with the Yahoo reminders
going out. All 4 attempts were blocked! We do list meetings on our Events page and the main EGG page, for just such a problem, and for those who are not CFSupport e-group members.
Thurs Sept 21, 2-4 and 5-6:30 p.m., N. Bethesda clinic meeting and Cheesecake Factory
World Gratitude Day!!
Summary - There were 7 of us total, including Toni and Elly. It was the 1st EGG - Elly's Gratitude Group -
meeting where both of us present in person! There was a wardrobe
malfunction, rental car need, difficulty finding the elevator, and
other odd experiences, and yet it all worked out. There were smiles,
tears, and surprises. New friendships were made and important
information and support was exchanged.
We met for the first session in the conference room and the second
session in the lobby in the comfortable cushioned sofa and chairs. The
clinic personnel made us feel welcome and left us alone to our
conversation. We learned if you stay at that location until after 7pm,
you don't have to pay for garage parking.
JC told us of the nearby organic store called My Organic Market (MOM's).
Turn left onto Rockville Pike, Right on Nicholson and its on the right,
well after the mall. She suggested people go there before or after our
meetings at the clinic.
Sitting in The Gilbert Clinic, it did feel strange to be discussing the
merits and the ups and downs of their program and many others programs
people were interested in talking about, (Teitelbaum, F&FC). I
pointed out that being able to ask the tough questions, without fear, of
ourselves and why things are the way they are, is a major point of the
EGG group and healing in general. We have Gilbert Clinic's team's
support in that. They made themselves scarce to give us the freedom to
speak openly. Asking hard questions surrounded by people seeking the graces of gratitude often leads to finding new answers, or at least a new twist in thinking.
The regular handouts about CFS, FM, symptoms, disability applications,
a few CFIDS Chroncles and FM Frontiers were made available. Some
attendees have never been to one of our regular meetings and they were
pleased to get the written materials. The conversation wandered around,
but kept returning to the bigger context, not just CFS or FM, but whole
EGG is a whole life discussion group for people with CFS, FM and OI,
framed in appreciation of what is going well, even if that is something
so small as to be knowing what an egg is. We acknowledge losses, begin
to notice the gains, begin to find balance again.
Tues Aug 29, 7:30 p.m., EGG Conference Call Summary, by Toni Marshall
Traveling Up Hills,
Feeling Better Than Hoped For After Longer than Expected Journeys...
...two themes of Elly's Gratitude Group (EGG) meeting by teleconference
Tuesday, Aug 29th. We didn't plan it, the stories just turned out that
Hikers were full of stories of their recent conquests of hills. Each
person mentioned they'd gone far enough to have been too exhausted,
but, nevertheless recovered faster than they'd expected. Each
expressed the joy they experienced being out, being physical for a
change. They described little and big rests needed along the way, and
taking plenty of fluids to care for themselves. A hiker described going
horseback riding as part of an extended adventure with a friend.
A biker told of traveling 25 miles, on flat terrain, without working up
to it, just like she used to, yet biking farther than she'd planned to
go. She was pleased to be feeling ok three days later. She drank Gookinaid to replenish water and electrolytes the next day.
I told the story of my mother carrying water up a mountain every day in
the 1980's to please her idiot husband who wanted to live on the land
until she'd had enough. One told of giving up his social climbing of
the past and his recent story of climbing out of the worst of his
illness to a place of more gratitude and hope. Three of us
discussed suicidal thoughts when we were first diagnosed, wondering
what we were good for, and I had similar thoughts later, too, when
feeling regret for hurtful behaviors toward others in the past, all
three of us recovering from those feelings of worthlessness and despair.
For those of us with vivid imaginations, the travelers in the group
described wonderful hills, waterfalls, woods, flora and fauna on their
journeys. Our caller from Hawaii said views from windows in her
home are lovely on the days she is up to letting the outdoors in.
I live 9 miles from the Chesapeake Bay, visiting there with my daughter
on a gorgeous, cool day in April, feeding ducks and attracting little
children who were chasing the ducks, to our great delight.
One caller from Oregon said she also wanted to join the July
teleconference call but had to pack in case she needed to evacuate from
the raging fires near her home which destroyed many homes in her area
while her neighborhood was spared, for which we are all grateful. We
introduced her to another person from Oregon on the call and listened
while they discussed neighborhoods they knew in common!
Elly Brosius discussed her climb out from under a mountain of symptoms
with the help of Jonathan Gilbert's herbal treatment, a pastoral
counselor, Sam Makoul, and her
preparatory work learning to incorporate gratitude in her life. She
even has gratitude for symptoms as metaphors to be understood
spiritually. I discussed major improvements working with Gilbert
and his herbal treatment, too.
I remember well Gilbert's presentation
about our society's stresses. For example, the average New Yorker
witnesses thousands of ads and commercials every day which work very
hard to convince people their lives are no good until they've attained
the products being sold. We discussed the example of toothpaste and an
experiment showing how little, if any, toothpaste is needed for a clean
feeling and healthy mouth by the author of The Tightwad Gazette.
(Brushing and flossing were shown to be more important for health than
toothpaste. The author used thread for floss, very inexpensive and
money-saving!). Ads are designed to make you feel unlovable,
undesirable, unacceptable unless you buy the presented product. This
part of Gilbert's presentation reflects his understanding of the super
stress sensitivity of CFS/OI/FMS patients.
One caller remembered my comment from last month that I rarely bathe
anymore because it causes so many symptoms. She found it helpful
to know others are in a similar boat. We discussed ways to take
showers to minimize symptoms. These include leaving the
bathroom door open for steam to escape providing more oxygen in the
shower, turning down the temperature of the shower before getting out,
shower quickly, shower or bathe at night so that symptoms are mitigated
by going to bed afterwards.
There's an intimacy created when conversing by phone from one's living
room difficult to attain outside of our own homes. I don't remember
ever discussing my bathing habits at face to face meetings. Maybe
that's too much information for some people, but it's a relief for me
and the person who remembered it from last month to know we're not
alone and that it helps prevent symptoms to bathe less. I never
discussed such a thing until some brave, anonymous person wrote of
their bathing habits in the CFIDS Chronicle a couple of years
ago. It was such a relief - one less thing for which to feel bad
We discussed towelettes and lotions for washing up, using a towel or
bib to catch drips when eating in a recliner and for brushing
teeth. I brush my teeth in a recliner without toothpaste to avoid
creating all that messy foam, then I use a teensy bit before rinsing
the brush in the bathroom. One person reports having found an
adult bib which is black and attractive rather than child-like and ugly
by googling adult bibs. She was interested in saving the extra expense
of replacing stained clothes by finding a reasonably adult bib.
Eating and brushing teeth while reclining saves OI patients from
symptoms, saving upright time for more important things, like paying
bills and filing taxes, microwaving dinner, shopping and more.
Hilary found tremendous help attaining a spiritual sense of gratitude and purpose as well as a new level of healing reading 'CFS is a Call for Soulwork'
by Gretchen Brooks Nassar. She describes the author's idea of CFS
as a gift, which seems antithetical on its face, but, there is
wonderful insight here for dealing with such a difficult chronic
This led to discussion of the value of recognizing all aspects of
ourselves, accepting the good as well as those things we'd rather not
face about ourselves. For instance, Elly said I was a cranky
b____ while going through the disability process 1998-2000, pointing
out how happy I am today, even though I can tell you I can still be a
Elly discussed making peace with her inner meanness. She's discovered
things she's told people which seemed mean at the time actually helped
them. After beating herself up about stuff for months or years, she
would get feedback like, "thank you for saying that so bluntly", "you
saved my life by shaking me out of my denial," "you saved my
disability", and "God, that was hard to hear, but that was really
helpful." Meaningful meanness? What a concept!
Accepting ourselves as we are, sweet-tempered and petty, refreshingly
honest and mean, angry and happy, able and disabled and the many more
things we all are all at once is harrrrrd, but valuable work and the
greatest uphill journey/ascension of all.
Participants of the August teleconference called from Hawaii, Maine,
Long Island, NY, Northern Virginia, Annapolis Maryland, 2 from
Waynesboro Virginia, and 2 from Oregon. It takes a few comments
from each person and asking each others' names a few times before we
recognize each other, but we're getting to know each other in spite of
conducting our meeting from our recliners in our homes.
We giggled at Elly's very creative gratitude idea that day: "I am
grateful I don't have to melt sand to pour panes of glass to make my
own windows." Elly suggested we make a special place to write
'off the wall', out of the ordinary gratitudes. Feel free to post yours
on EGG's A Guestbook of Gratitude page, AGOG , or in a new Gratitude Forum on CFSTalk
called Unusual Gratitude Journal Entries. Feel free to start a new
topic there to continue discussion from the calls or our meeting
Can you believe it? People with long time CFS and FMS finding joy and
ability for biking and hiking! Discussion of money saving tips around
personal hygiene, de-stressing, glass pouring, adult bibs,
Tues August 29, 1:30 p.m., Woodbridge, VA, Ikea's restaurant
There were six of us, 2 new people - 1st meeting ever, a mother and son
both with CFS who drove up from Fredericksburg, and someone who hadn't
made it to a meeting in a long time, and me, Elly. 3 of us ate. Yummy.
And there was hugging, compassion, comiserating, and finding the funny.
Afterward, I bought IKEA's mascot - the big stuffed heart with the
hands that welcome's you to return stuff so they can make things right.
I've been having fun with it ever since. Lots of references to having a
big heart. : )
I was great to have a meeting so far south and to be able to drive that
far, drive home, and then do the conference call in the evening all in
the same day! See next entry up.
Sat July 29, 7-8:45 p.m., Conference call
Summary in Progress. A great time!
Sunday June 25, 2-4 p.m., Loudoun Co. Rust/Ida Lee Library, Leesburg, VA.
EGG Meeting Summary
The June EGG CFS/FM/etc meeting took place at the Rust / Ida Lee
Library in Loudoun County, VA, in a country town called Leesburg.
Leesburg is growing fast... but it still feels like 'the country' to
me. D gave me a lift for the half hour ride from our homes on the edge
of western Fairfax County. We had a good talk on the way there.
We missed our turn, stayed calm, figured it out, and found our way.
I knew D from the group years ago. As she told us at the meeting... she
disappeared from the support group scene for quite awhile, to raise
twin girls. Her girls went off to college within the past couple
of years. While struggling with her health and the family
responsibilities, D gave up most outside interests and activities. She
had hoped that once some of the busy-ness of home life calmed down and
she could focus on her health with the girls away at college, she would
somehow just improve. Her symptoms remained, the relief and progress
was not what she expected or hoped for. She came back to the groups to
learn what was new. She has been delighted to find out about the
Gratitude Group and The Gilbert Clinic.
There were 6 of us at the meeting and a reporter and photographer. We
all told more of our individual stories than usual. We went around the
room, telling a little bit about ourselves and a little about what
we're interested in at this point in our illness. The reporter asked
good questions, wanting to get a sense of peoples lives, and we were
pleased to fill her in. One of the photographer's photos of M that day
was featured in the newspaper article, One Woman's CFS Journey.
One person, in 70s now, had been sick since the 1980s. Twenty + years ago
$16,000.00 (sixteen thousand!) was spent for only the first year of CFS
treatment. Her doctor was the most talked about/popular CFS doctor in
the late 80s/90s for the DC area when I joinged the group. Three of us
immediately remembered who she was talking about.... and the stories
that went with that doctor. (He's no longer in practice.)
The person had come to the EGG meeting because there had never been a
CFS support group meeting in the area. The announcement in the paper
told of the special opportunity to come talk about CFS, since telling
friends about it is not an option. Her family knows so much already,
helping by having built special chairs, a special keyboard holder
and computer stands for keeping busy while also reclining. We were
encouraged to all keep going, to seek things to do that can be done
successfully. This attendee was looking for support and not new
treatments at this point, preferring to enjoy stability.
I was silently grateful to my improving health for keeping my new
traveling group going, extending its reach to Leesburg. There was a
sense from most of the Loudoun County people that they would never
venture inside the Capital Beltway, Route 495, for our regular meetings
- even if the speaker was most excellent. Ever. I can relate. I
wouldn't drive to Maryland or DC, I couldn't cross over the bridge so
to speak, for most of the time I've lived in VA (16 years). I think I
did it for work twice in 1990 and it was an awful struggle for me. I'm
pretty excited I drive to MD now. I am going to have my first meeting
in Maryland in September!!!!! Its a big deal - I am only
newly able to drive that far more consistently.
Another attendee was a man who lives in Sterling. He was younger, newer
to the scene... not quite sure of his FM diagnosis. He described some
of his been through some sleep study nightmares.
He needed lots of support to know he is not alone and there are things
that do help.... there are doctors and lawyers who help. He told
us of difficulties with old and new work, difficulties getting help at
the department of vocational services, how he struggles to help out at
home, too. We gave him information, suggestions, and a lawyer contact.
He has had a good meeting with that lawyer. He has joined our e-mail
list. He has told me of some inspiring guided imagery and relaxation
D had a lot to say about how she got sick, what things made it
worse, the kinds of thoughts she had along the way, and strategies she
developed to raise twins while sick. She also said she felt now was the
time to reconnect with the group and me. She felt ready and drawn to
try something new, treatment-wise. She discussed her decision making
process about whether or not to sign up for The Gilbert Clinic's herbs-
medical- counseling program for FM and CFS and whether or not her
family would be supportive of her decision. D has since begun the
Gilbert Clinic's program and is feeling a bit better and stronger
already. Yet, she knows healing may be an up and down thing. She
is quite pleased with the effect of the herbs and how her commitment to
a mind-body-spirit approach is already facilitating big changes.
D has offered me a ride to the IKEA meeting on Aug 29 if you want to
meet her. Isn't it funny how just as I am able to drive further, people
offer me rides?
D has also told me she has been silently grateful for the good
driving directions to The Gilbert Clinic I put on our group's web page
about Gilbert and the herbs. It helped her get there with calm and
ease, much clearer to read than the internet generated map directions.
She really liked the intro workshops held there. She also got lost on
the way home, but something was different. She was able to stay calm.
M, the star of the newspaper piece listed above, came ready to talk
about how the gratitude group started at just the right time for her. A
friend, diagnosed with a very scary, perhaps terminal thing, had
started sending her beautiful inspiring, positive attitude letters when
M was stuck in her anger and frustration about her CFS symptoms, her
migraines, her life. It blew her away this woman could send such
amazing, uplifting stuff while dealing with such a scary medical
situation. She felt shaken up enough to find a way to let go some of
her own anger and negativity. She may still have CFS in the end, but
she realized she didn't have to be so miserable. She wanted to find a
way to express more uplifting things... perhaps to encourage
others. M's changes in thinking about her struggles occurred
around July 2005, the same month I started the Gratitude Group. M has
been in it from the beginning.... and inspiring me with her enthusiasm
for reclaiming more joy for herself.... and her effort to notice more
of the positive. We talk more than we used to, and now I notice she
always has a story for me, something fun to talk about. Part of the
gratitude group's mission is to allow us to see and feel more fun
inside, and to be more able to spread it around.
She showed us a little book of daily meditations she began using to
help her remember to focus on something positive every day. Now
finding/looking for the uplifting has become a habit for her and she
doesn't need the book on a daily basis.... an encouragement to us
all. She shared with us a powerful thing from the book. And we
had a coincidence, a syncronicity right there on the spot about it. I
was going to read to the group 'The 9 ways to make yourself miserable'
if you have CFS - from Fred Friedberg's book. I showed it to M
first. The first of Friedberg's miserable ways is to ask "Why
me?" as often as possible. M's book excerpt discusses "why me?"
We smiled, throwing up our hands with a, "Do you believe that?" We both
brought different examples of a "why me" thing! M's selection was an
Arthur Ashe quote which flips the "why me?" question around by daring
to suggest asking "why me" when things are good, better or
I don't remember the author or title of her book, but I do remember the
quote she read being included on the May 11th page of the book... maybe
because May 11th is the eve of CFS/CFIDS/FM Awareness Day.
The quote by Arthur Ashe included specific examples of good things for
consideration of "why me?" which I no longer remember, so I made up a
few of my own:
I had a really good day today. Why me?
I have some pleasant and reliable friends. Why me?
I am smart enough to enjoy irony, sarcasm, and a really clever joke. Why me?
I live in America in the 21st century. Why me?
Not all of my body hurts. The parts that do hurt do not hurt all the time. I do not feel pain in my sleep. Why me?
Most food I encounter is relatively safe to eat. Why me?
Isn't that a powerful mind exercise? Kind of reaches beyond mind into
soul for me. I've been talking about it ever since. Its like an
added step to 'notice the positive' for your gratitude
journal. I really do enjoy considering the whys of things
these days and am pleasantly surprised with the added bonus of
S, our nutritionist and pastoral counselor friend, was also at the
meeting. He's spoken to the main CFS/FM Support group about Heart Math
exercises. He said he realizes his CFS patients have turned out to be
some of his best friends. He cares and thinks about them in his
off hours...because their life and illness stories are so
life-encompassing. The stories of our lives affect him deeply. He
said his patients, give him inspiration just by continuing in the face
of so much struggle. On his way to a gratitude meeting, focusing on
gratitude, he discovered things he hadn't put together about working
with CFS and FM patients. Over the years, he's changed the way he
puts together a program and helps people find not only physical but
spiritual nourishment because of all the things they courageously share
The reporter, SS, of the Loudoun Times-Mirror, thanked us. She
honored us for our sharing with appreciation, saying she
understands CFS in a deeper way, now. She admitted she was dismissive
of the illness until very recently because of the terrible name. She
was shocked by much of what she's learned about CFS. Her July 11th
articles in the Loudoun Times-Mirror show how much she wants others to
appreciate the seriousness of the effects of CFS, its effects on lives
and families. The front page article is Chronic fatigue syndrome - a lot more than being tired.
We talked about interrupting as a symptom. Becoming so afraid to forget
an important or slightly urgent idea, you blurt out whatever's on your
mind. You cannot wait 'til the appropriate time to speak in a
conversation for fear you'll go blank by then. Some people who
interrupt frequently have been reprimanded so often, they become so
self- conscious, they avoid conversations altogether. D talked about
how interruptions had affected conversations in her family. M said
she'd been reluctant to join one of our conference calls because the
urge to blurt at any moment caused her to fear becoming a distraction
In our gratitude group, CFS and MVPS/D group meetings, blurting is
okay. In fact, we might look at our meetings as a series of
interruptions based upon a main theme. It's okay to do it around
me. Sometimes talking about why we do it and how to compensate
for it may be helpful for everyone in hearing distance. If the
situation doesn't allow you to discuss it in the moment, it's always
good to have a little notebook to jot a note about it for later.
Noticing you tend to interrupt in conversations is step one. It may be
good to let other people know you're aware you're doing it, you know
it's annoying, and you wish to be different but it's the only way your
brain works right now. Our friends and families may help us by spotting
that look in our eyes, remembering what they were saying to comment
later, allowing the interruption. Others may adopt an easy-going
attitude, too. Learning to be easy going ourselves, letting go our fear
of losing our place, feeling lost and missing an opportunity serves as
a model for different behavior from others.
After the gratitude meeting, although we were tired and starting to
ramble and babble, D, M, and I went to Panera Bread in Leesburg.
We talked another couple hours, going into more depth about life and
healing and philosophy and self-acceptance. We agreed it's funny to see
when it's time to let some object, say, a piece of clothing go out of
your life, you're finally ready to move on, and letting it go is easy
all of a sudden. We don't have to beat ourselves up for all the
clutter. The experience of holding onto something long enough to
experience easily letting it go is important, too.
It was a good time. Driving home, everyone got caught in a severe
thunderstorm. It was wet and wild. We knew we'd be wiped the next day,
especially M, but sometimes that's okay. Some things are
worth mini-relapse, especially if you can remember it was worth it
while recovering from a nice time. M was bummed about how bad she felt
the next day until she experienced being bummed while catching an ad
for the musical 'Annie' at Wolf Trap, hearing, 'The sun will come up,
tomorrow...,' and, 'Its only a day away.' The message in the
music kept her going with a smile. She indeed felt better the next day.
April 2006 EGG Conference Call
From Thursday // April 27, 2006 // 3 - 4:15 PM
There was laughter, caring, understanding, and shared tips on how to
chase ants out of your house (cinnamon), what are some features to look
for in a recliner, and different ways of keeping gratitude lists. There
was surprise and intrigue about developing new attitudes about body
symptoms and mind-body-spirit-emotional healing. There were 8 of us.
We got talking about plants. Indoor and outdoor. How through neglect or
because we're not doing well, we accidently rake over them, break off
leaves starve or dehydrate them. This can be really upsetting. When it
happens, one has a choice about what to say to self about it.
"I'm such a bad person, a plant killer, or an evil plant Mommy/Daddy"
doesn't bring the plant back to life and probably drains one's energy.
"I did the best I could given how I feel" and "Its okay to focus on
taking care of myself right now" are other valid choices. Having been
so particular about plants before starting a big deal healing program,
I recently had some plants die and it was a frustrating. For me, these
plants dying have come to symbolize how the old thoughts / ways /
symptoms need to die off, making room for new plants, new ideas and a
new level of wellness.
During the call, I mentioned 5 possible things I am grateful for about the CFSAC
(CFS Advisory Committee to the Secretary of Health):
It exists, so when things are ready to move productively - the structure is there.
Several of the people on it are wonderfully dedicated advocates/doctors/researchers and
the meetings give them an opportunity to meet and know each other and attendees and
form plans/alliances outside the committee.
Patients / others have a regular means of getting CFS information into the Federal Registry.
CFS is the only illness to have such a Committee at all.
We can use the committee's progress or lack there and what happens there
as part of our Lobby Day and other advocacy efforts.
Toni talked about a new symptom and welcoming it instead of being
afraid of it. She is monitoring her new high blood pressure medically,
but also viewing it more as a way her body is releasing something
emotional, and that it may be temporary. There was talk about what
Louise Hay says in "Heal Your Body" about high and low blood pressure.
We took her ideas and applied them to OI, NMH and POTS. Thursday's EGG
call inspired Toni to write a forthcoming email about the side effects
of appreciation. The conference call was a good time. It ended with a
multi-voice chorus of "This was fun!"
Further encourangement: Great article by Daily Om: "Finding the Gift in Bad Days"
February 2006 EGG Conference Call
The gratitude conference call 2/27 was a good, encouraging time. There
were ~ 9 people, from 4 states. But since 5 were new people - it was
more like a regular support group meeting than a gratitude group. There
was Q&A questions about symptoms, disability, and treatment. That
was okay, and probably shows the great need for a phone support group
for our illnesses. If anyone wants to start one, I'll help you!
We all found the call inspiring... and tiring, as it went for 2
hours! Listening takes energy, more than you might first guess.
Thinking does, too! If you call in but want to limit your time to half
an hour, that is fine. You don't have to ask permission or say
good-bye to hang up if you are feeling a need to go. It is okay.
I've scheduled another conference call at the end of April. I
skipped a month because of taxes. Let's get together again and talk
about what's working, what's going right, and new ways of viewing the
Did you see that PBS show called The New Medicine? It was incredibly
good. It emphasized the science being done to show how thoughts and
states of stress affect things like wound healing and recovery from
trauma and quality of life with chronic illness. It shows western
doctors who treat people as a whole person and not a collection of
symptoms and parts. It showed a beautiful blending of high tech
medicine with personal attention, use of guided imagery, acupuncture,
yoga, food, & more. 5 great PDF articles about choosing an
integrative medical practitioner and knowing your patient rights and
more and several interviews are online: http://www.pbs.org/thenewmedicine/index.html
To order the DVD for $24.95 + $5.95 shipping, call Twin Cities Public TV, (800) 229-8575.
Margaret Chesney, PhD, was interviewed. She is the deputy director of
NIH's National Center for Complementary and Alternative Medicine
(NCCAM) and was our group speaker for Nov 2003! The Kernan Hospital's Center for Integrative Medicine in Baltimore was shown.
My aim with the gratitude group is to keep bringing focus back to how
truly powerful the view we take of our lives and the things that happen
to us is. Thoughts, intent, expectations influence and transform the
experience of health, either up or down. Negative self talk (my body is
failing me, if only this happened I'd be fine, I am so stupid) seems to
come naturally or easily learned from others. It can drain you and
often the people listening to you. Let us instead help each other shift
to uplifting self-talk. Use re-phrasing and noticing what is going well
to lower pain perception, feel less hyper, feel less overwhelmed, and
to expand the safe space around us and within us to deal with difficult
January 2006 Meeting - Fairfax VA California Pizza Kitchen - Summary Excerpt
M and I met for a nice afternoon lunch. I had the Waldorf salad and she
had the Original Chopped Salad. She had been at a CA Pizza Kitchen a
really long time ago, remembered the name of what she ordered and that
she liked it, opened the 3 page menu, and her eyes went right to it.
She didn't have to face the array of choices and do the reading,
everything seemed to fall in place and go easier. This is what I have
found since practicing more and more gratitude so it was fun to see her
One of the things talked about in the movie What the Bleep do we Know?
and the books The Celestine Prophecy by Redfield and The Holographic
Universe by Talbot is when you start on the "gratitude and we
experience things for a purpose" path, you might start to have more and
more coincidences or syncronicities. Jung gave us the latter term.
M was so excited as she had just had a big coincidence that related to
gratitude involving something she wrote in her journal being repeated
on the Today show within 5 minutes! It felt very important and like
encouragement for her. She didn't contain herself and had to tell me
before we ordered food. I was so excited to share it with her. The we
ate and had a good conversation as we discussed many difficult things
about life and life with illness and how viewpoint and attitude and the
past affect your experience of them now.
For those interested in syncronicities, here's a book:
Consider The Butterfly, Transforming your Life Through Meaningful Coincidence
by Carol Lynn Pearson
"At some point in our lives, we have all experienced synchronicities,
those amazing coincidences that offer short glimpses into the backstage
of life, the hidden order of things. Carol Lynn Pearson has for years
kept track of the coincidences in her days, looking at them with a
poet's eye for metaphor and meaning: a pan of "mama's cinnamon rolls"
appears in the first shot of a movie just minutes after she and her
sister reminisce on that favorite childhood food; a smiley face pops up
on the computer screen during the writing of her daughter's funeral
service; eight butterflies appear within an hour, not on the wing but
in the word, bringing a message of transformation and hope. Learning
the language of synchronicity can help each of us to more frequently
access and recognize the wisdom of the divine. After reading Consider
the Butterfly, you will never again see the events in your daily life
as just events. You will start to see your name on messages sent
special delivery, giving helpful clues on your own personal journey."