CFSupport

The Northern Virginia
CFS/FMS
Support Group

 
EGG - 2007

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Elly's Gratitude Group
for those experiencing
Chronic Fatigue Syndrome, Fibromyalgia, & Orthostatic Intolerance

Selections from Email Meeting Summaries 2007



December
November
October
September 21, World Gratitude Day, Conference Call
August
July
June
April
March 29, 3:30 PM - with guest, author Alissa Lukara
February 28, 8:30 PM, conference call; Feb 1, 4:30 PM, at The Gilbert Clinic
January 29 Conference Call
January 11 Conference Call

Some other EGG Pages
Sign A Guestbook of Gratitude (AGOG)
2006 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.




December






November







October 






Sept 21 Conference Call

World Gratitude Day!!





August 






July 






June 2007
EGG Meetings






Sunday April 29, 2007, 4:30 PM
Call and Summary pending
To call, dial (218) 936-6666; Press 2,  Code: 33669933.





March 29, Thursday, 3:30 PM, Gratitude Group Conference Call
with Guest Alissa Lukara, author of Riding Grace, A Triumph of the Soul

Soulful discussion about the healing process, of embracing everything in life without judgment, about the ups and downs and courage it takes to live with CFS and similar. The Summary, posted to CFSupport on 4-17-2007:

For new members: What is EGG?

On March 29, there was a conference call for Elly's Gratitude Group (EGG) for people with CFS, FMS, and OI (chronic fatigue syndrome, fibromyalgia syndrome, and orthostatic intolerance). We meet by call sometimes so we can have friends around the whole country also seeking to use gratitude and other emotional and spiritual and intellectual resources for coping and improving life with our conditions, and because it means we don't have to use the huge energy it takes get dressed for the outer world, drive somewhere, sit up and act normal, and interact with the world that doesn't understand.

It is a discussion group where the emphasis is not on physical treatments or symptoms although those sometimes get mentioned, but instead is on the use of new kinds of thinking and language and the search for meaning in physical experience. It is for accelerating healing of any or all that ails us as a mind-body-soul entity.

Introduction

"There's a self expansive aspect of gratitude.
Very possibly it's a little known law of nature:
the more gratitude you have, the more you have to be grateful for."-- Elaine St. James


A funny thing that happened at this elly's gratitude group (EGG) meeting... there were many mentions of chicken! Things that smelled like chicken or well I just don't remember what all. But it led to some funny chicken and egg comments. Reflecting on it now, I feel it is a helpful hint for healing to question which things come first.

Must I have more things or health to cultivate gratitude or will gratitude for the body functions that still work cultivate more health as the quote above suggests? 

Was I feeling stressed to the max first before a trigger of an infection or accident sent me into CFS, FM, OI or is my condition now creating stress sensitivities or is it both?

While I was at the restaurant Eggspectations on Sunday, the menu said: "Which comes first, the chicken or the egg? Now you can have both! 2 eggs any style with grilled chicken breast and potatoes." The EGG group with its chicken mentions invites to let go of the either/or choices and welcome both/everything.


The EGG meets Alissa Lukara Meeting, 3/29/07, 3:30 PM

Summary by Elly Brosius

Alissa Lukara just published a book, "Riding Grace: A Triumph of the Soul," in which she describes her life experience with CFS, with childhood emotional and physical abuse, and with repressed and released experience and memories of sexual abuse. She also describes what it took for her to heal all of that and this June 14, it will be 9 years since she recovered from CFS. She and I are working on a teleconference to mark that day called Riding Grace, Coast to Coast. Alissa is also the creator and founder of a website and Cyber Center called LifeChallenges.org that helps people through their difficult life experiences.

To make sure all who wanted to be heard from could participate on our March 29 conference, I called on people "around the room" and one-by-one, asking how people were doing with gratitude in the face of their own Life Challenges. Callers with CFS, FM, and other chronic illnesses, serious life challenges are indeed and surprisingly to many, finding things to be grateful for, finding a way to laugh a little with friends who get it. Here is some of what we heard.

From several:
-- I'm am grateful to have this chance to participate in this group, over the phone, in my pajamas. It is so good to hear compassionate, knowing voices, voices with warmth and caring.

For what we heard from individuals, I'll write dialog in the "I" voice, adding names to those I know are comfortable with sharing their names.

 -- I found something so profound and fitting to share on the day of the call. I was psyched to share it. Then call time came and even though I thought it so important and so obvious that I couldn't forget it, I forgot what it was or even where to find it. My gratefulness has to do with how I used to mutter for hours and be upset at this sort of thing. Instead, now this makes me laugh because there is a lesson in everything I forget! And so I realized what happened, that I could be okay with forgetting, could be a more fitting and helpful thing to share than what I "lost"-- that it is possible to not lose energy to being upset when one forgets what looking for, forgets what was going to say.... Forgetting is often a clue equally as important as finding and knowing. Sometimes, when looking for "lost" thoughts or stuff, we will find things we didn't realize we needed. Perhaps when this happens, we are being redirected by forgetting something to look for something else... A few people, and Alissa especially chimed in with agreement.
(Elly)

-- I am grateful for the book by Elizabeth Lesser, "Broken Open: How Difficult Times can Help Us Grow"  I really enjoyed it... She runs the Omega Institute for Holistic Studies in upstate NY. The book is also about the human spirit and how adversity gives us what she calls the "Phoenix Process" the chance to grow and embrace change.  Her writing style is an inspiration and her book is a wonderful gift because it is honest and poetic. I emailed her and she took the time to respond which I think is quite telling of one's authenticity and generosity.
(Julie L)

-- I am grateful for finding the support group and last month's meeting in Annandale with the team of the Gilbert Clinic. I just went there and am driving home, on the beltway, my husband is driving. I filled in my application and I so hope they accept me into their program. It is so gratifying to speak to people both at the meeting, at the clinic, and now on this call, who understand and believe.

-- I am so grateful to the specialists attending to our sick service dog - with kindness with fees reduced, with their time.

-- I am so grateful for hearing our voices, even in pain. I am grateful for the research doctors are doing. I am gratefule that my Mom who also has CFS can go use the computer and go on Medline and do research.

-- I am grateful for just recently finding out / realizing that CFS and it all the symptoms could be a way of protecting myself from spending too much energy - a new paradigm of thinking for me. That is helping me change my views. That is giving me hope. My body is not against me, but working for me.

-- I am grateful my son is so logical when I am not. In a parking lot recently, when my remote keyless car door opener didn't work, he reminded me I have a key for the door! I may not have remembered, and might have cried or called for help, when what I needed was in the palm of my hand.

-- I am newly more grateful for my husband. I have been mad he has been away for a job, the separation is so difficult. But with help, and refocusing, practicing looking for the hidden blessings in it, it has made us appreciate each other more.

-- I am grateful for some things moving to a small town has brought me: I switched all drugs at to a new pharmacy, where they know me, say "Hi, beautiful" every time I go in. They take the time to know me. There is a sense of community.

-- I am grateful to friends who run a children's sale. With pacing myself, I was able to volunteer many hours - and I am still standing. I avoided triggers. I became very aware I was choosing peace amongst the chaos there. There was a gift of clock with stars that moved me.

-- I am perpetually grateful for 2 dogs, cocker spaniels (who said hello on the call!). One is "the boss" in the doorway (he is13), and the, younger one, "the nurse", she rubs me with treatment/massage.

-- I am grateful that I love dogs and can see them on TV, I don't have to have my own. I sometimes want a dog but after talking to Elly about how expensive it can be if something goes wrong, how much work, how they look at you so you won't stop petting them, I realize it wouldn't be fair to the dog because I am barely taking care of myself physically right now. (Toni) [After this, Eileen brought Toni a squishy plush stuffed dog at the Fred meeting. She has named it Goldie after a cocker spaniel she had as a child.]

--I am grateful I have figured out how to say,  when upset, justified or not, "You know I'm not really mad at you..."  People have an easier time be civil to me after that even though my voice has been raised, my frustration obvious, my choice of words including "choice words". (Toni)

-- I am grateful for
  the opportunity to talk to all on the call
  spring - bursting, glorious beautiful
   living in a valley between two Mountain ranges
    surrounded by green,
     being able to talk a walk! 
      (for 1 1/2 years, couldn't walk that path I so environmentally sensitive)
      The healing power of nature...
       That I am over CFS since 1998!
        (Alissa)


Next, Alissa got questions about writing the book, about her experience:

Were you writing all the time?

   I was journaling all along, then felt a soul calling to write more, and a I felt a lot of resistance.

What was the healing most about?

    The healing was most about Saying YES to entire life, not just writing the book, but life...
        it was grace in that workshop I went to [about shifting to Miracle Thinking]
          The book took 5 1/2 years to write

Was gratitude important in your process?

   Gratitude has been invaluable to me, not a practice in the beginning, later it was important
     I would write 5 things, yes, writing them down adds more to it
      Its okay to write simple things: E.g. breath, indoor plumbing.


Another caller, Ingrid, joined us and commented about Alissa's website LifeChallenges.org . Ingrid was grateful to find the stories by Jaqueline Kramer there, especially

          "Healing into Health"
          http://www.lifechallenges.org/people/kramer.html

about channeling the unconscious mind through health health from the inside out, not the other way around. She said "I'm still wading through, but"  it is helping, so interesting....

Alissa told us Jacqueline is author of Buddha Mom, who has a website HearthFoundation.net -  A Home for Spiritual Parenting and Homemaking

         Another story of hers at LifeChallenges is
         "Skillfully Loving Your Child"  Jaqueline Kramer
         Excerpted from Buddha Mom: The Path of Mindful Mothering
         (Jeremy P. Tarcher/Putnam, New York 2003)


 
Another caller, who joined us in progress, added her gratitudes:

--"even though I'm feeling crummy..." some good things happening. I may be getting a helper tomorrow, to help with laundry, to help unload the dishwasher. I am not becoming "part of the chaos that has become my apartment" (Celia)

It took our last caller more than an hour, plus an email, to get through. Yay. That's preserverance! She was the 13th attendee and she offered...

-- I am so grateful for the book and for Alissa sharing her story. There is much that is like my story. Sexual abuse is much of the stress that became my CFS and FMS. I also survived.  I 100% believe my CFS and FMS comes from that stress, but I don't think that has to apply to everyone. We all have different stories and and things we had to deal with whether it be genetics, infections, traumas. I have found especially difficult to talk to other CFS patients about my story. They don't want to know it if it has to do with abuse. So I am very grateful to Alissa, to her book, and to be a part of this call.


Then there was a long discussion about cleaning products that would be easy to handle if chemical sensitive and where to get them if you live away from a big city. There were tips flying left and right about lemon juice, vinegar, baking soda, having friends who shop more pick stuff up for you, internet shopping, hiring cleaning services...

Then Alissa was asked:

Eileen: What is the title "Riding Grace" about?

Alissa: Riding Grace is a concept of thorough acceptance and surrender to the moment, whatever the moment is––not what should be or needed to be––that opened me to grace. Grace connected me more to myself. I can't always do it. Its also about looking back, looking at the grace of each moment even the sad or crummy ones. Anytime we can reframe something, that is important. Honor what comes up, too. And its okay to be a mess.

Toni: Can you tell us more about what you mean by wholeness? Wholeness came up on this call and is in the excerpt/article by you at Womanlinks, "The Power of Embracing All Life"


Alissa: Wholeness is inside us already, not a journey to it. Wholeness is always there. We are just remembering it. Wholeness is a state of grace, in my authentic self, fully in the moment. Wholeness is seeing that I and my life is perfect as it is, not about perfection. Even in the messy moments the larger thread weaving through my life is there.


Members like this and chime in. Eileen tells us of an old saying, "It doesn't have to be perfect, it just has to be done." Toni shares an insight... "Gratitude connects us to The Big Picture." Much of what our calls and the gratitude group is about is about reframing pictures, seeing more. We thanked Alissa for joining us. We thanked each other for a good time. We reminded each other that listening in talking is enough to make us tired and to go rest. We signed off.


After the call:


-- One member, Nina, had lost her voice and didn't talk on the call, but she listened in. She wrote us later: "I found it tremendously helpful to be able to hear each person's expressions of gratitude in that round robin format.  Altho I could only whistle "hello" on this call, I woke the next morning w my full voice, so a big hug and thanks to everyone on the call for their positive, healing energy!!"

-- One of the first time callers wrote, "..., the call was quite an uplifting experience for me."
 
Several of us thought it would be great to help get Alissa on our favorite talk shows such as Oprah or NPR's Diane Rehm (Diane Rehm wrote "Finding my Voice"). Ingrid wrote us later: "I'll definitely do whatever I'm able to help get the word out about Alissa's book.  I checked the Oprah website, and noticed a link for emailing them re new show ideas - here it is for anyone who wants to email them!" http://www2.oprah.com/email/reach/email_showideas.jhtml

To write to Diane Rehm, email drshow@wamu.org or go to
http://www.wamu.org/programs/dr/contact_us.php



Most people on the call hadn't yet received their ordered "Riding Grace" books, or even placed their orders although they expressed a desire to. Quoting something that is meaningful to you in the book is a good way to have your letter stand out when you write to a show. Its okay not to read the whole thing!! I sometimes get what I need from a book from just the title or one paragraph! Having the confidence to know that and not forcing myself to read more took a long time to get to.

If you have trouble reading and would rather hear about Alissa's story on TV or radio, write that in to your favorite shows!

Reading takes energy and is hard with cognitive problems. Alissa knows that very well. She is looking into getting the book on tape for those that do well with that. For our June 14 teleconference, we are looking into having it recorded for a MP3 download.

Alissa sent a note after the call: "I so enjoyed being part of the group. Inspiring. So glad you're doing it."


Thank you for your participation, your feedback, reading this summary! One more Elly story:

I said a weird thing on the call. And whenever I say weird things (weird's origin comes from fateful!) and it happens more and more as I heal, I have to think about why. This thing kinda sounded mean... but then I figured out what it meant and it has a wiser message then I was conscious of when it spilled out of my mouth. Here's what happened...

Alissa had sent me a signed hardcover edition of her book as a thank you for spreading the word about the book. I asked her why Amazon was only listing paperbacks. She told us after a initial printing, there were changes in the book industry and the publisher changed to only paperbacks. That mine was one of a limited set. And I said to all my special new and continuing gratitude buddies, "And none of you can borrow it!!!" I said it kind of forcefully, too. I asked Toni what she thought later and she said, "Yeah, I wondered what that was all about...that was weird and" a little harsh.

So, the oddness made me ponder it. I came up with something that makes sense and feels mean-ingful to me:

Alissa's story is a story of healing. It wasn't an easy journey. She worked really hard for herself, re-committing over and over, working in new ways and with new people, with remissions and huge setbacks. She had to give up ideas about what life was about, what illness and trauma was about, and find new ways to make her world and her health and/or lack of health at times make sense. Shortly before she recovered completely, she was doing so poorly she prayed for God to take her life. Then she found new strength to keep going.

My story is a story of healing. I am working really hard for myself, day in and day out. With remissions and huge setbacks. I had to give up my ideas of what life was about, what illness and difficult emotional experiences were for, about what is physical, what is science, what is spirit, and how to work with all of it at the same time. Even in this great time of loss for me, I see and feel many gains.

You are all working hard on the stories of your own healing, even when it doesn't seem like it. Even when it seems like things are getting worse... so I interpret that comment that came out of my mouth, that sounded so mean as this....

You cannot borrow another's healing story, represented by Alissa's book. You can receive the gift of someone sharing their story with you, to inspire and encourage you along. But you have to "get it" yourselves, get your own copy of healing, so to speak, for you. Only you will know how to interpret all you see and experience for your next step in remembering wholeness. You won't need to "borrow" the physical representation (the book, treatments, what we specifically did) of our healing stories, because your story of healing is the optimal one and only one for you. 

Corny? Perhaps... but my story has me living in Corny Land now and I am more at peace than ever.My laughter is more free and my emotions flow smoothly, if intensely,  through me, even grief. Come visit me in Corny Land, the gate is open.


Next 2 EGG Times  & Dates

April 29, Sun 4:30 pm EDT
May 29, Tue 8:30 pm EDT

Free Conference: (218) 936-6666, Press 2, Code 33669933, #sign. There still could be problems with the phone companies attacking these conference calls, so please dial a few times. Email cfsupport-owner@yahoogroups.com if you want me to let you know the status of our call while you are trying to get it. I check email while we are conversing.

On our next call we'll try for 2 official rounds of the "room". Use your turns for 2 Gratitudes, or for the first one, gratitude, and the second, a cool Coincidence. Some find the more gratitude they practice, the more coincidences find them. If you feel put on the spot when I call your name, its okay to ask me to come back to you or ask the group to help you think of something. You also can stay silent and not let me know you are there - if you just want to listen. I love list lurkers and phone lurkers!

Also, mark June 14, Thursday, 10:00  PM  EDT, 7 PM Pacific - for a Riding Grace teleconference event with Alissa and Elly marking the 9th year anniversary of Alissa's healing


We cannot hold a torch to light another person's path without brightening our own.
 - Ben Sweetland
 




February 28, 2007 - Wednesday 8:30 PM EST - Conference Call
There was poetry, sharing, lots of feminine connection. More first time callers, making new friends, feeling supported in new ways.

February 1, 2007 -  EGG Meeting
4:30-6:30 pm, at The Gilbert Clinic near White Flint Mall, Rockville, MD

A really helpful meeting for Elly. Lots of grateful sharing for all that is, laughter, irony. Funny thing that happened after was Elly trying to get into the car parked next to hers, same make and model, same color. Pressing the auto unlock device, she saw the lights flash but it took a minute to realize that was the car next to where she was standing. Gratefulness for being able to laugh, instead of panic and/or cry and call for help since the auto lock wasn't working.



January 29, 2007  7 PM - Conference Call
10 attendees, several new callers!


The gratitude group is a support network of people who have significant physical experience of CFS, FM, and/or OI, who want to talk about adding in the power of the mind and soul to their physical treatments to influence and accelerate healing on many levels. One way to begin is to
keep a gratitude journal, writing down 5 things a day, or even 2 per week, that please you, that you like and appreciate. We all have plenty of practice noticing what isn't going well, isn't feeling good, stuff we wish was different. This is about adding balance to that by remembering and noticing what might be okay, still enjoyable, and fun. We usually laugh often with each other, tapping into a powerful message. And we share helpful hints about coping, items of inspiration, new ways of looking at things.


Jan 29 2007 EGG Call Summary


Our Gratitude call, 1/29/07, was cut short for reasons we are not aware.  Suddenly, nobody was there and calling back into the call gave me a busy signal or no sounds at all. But what a great conversation!  Nearly two hours, maybe we needed an unexpected intervention.  We were getting beyond our normal beyond tired. Some might have been frustrated they had little chance to speak. When that happens, call me (Toni) or Elly the next day for more chances to share. This meeting seemed to demand less facilitation and go wildly into raw issues of coping and laughter and tears and amazement at our sharing. It was a little louder and bolder,faster paced than most of our meetings. 

Originally, there no periods (!), I mean, separations of sentences, nor paragraphs.  Wanted to get something down before I forgot the themes thinking we may add to it as we remember more, maybe by reading these. Decided this is an okay way to share a summary, too! -Toni

The Gratitude meeting themes were

---children,
---sadness over not having them,
---relief when realizing we couldn't have handled children if we had them,
---people who love children but can't stop themselves from cursing and saying other inappropriate things in their presencewho once thought they'd become day care providers after
disability retirement,
---vulvar pain and pain of the floor of the pelvis,
---operations on or to remove female organs to relieve pain from which we never recovered,
---mothers and daughters with similar or same conditions and coping well and not so well,
---mothers who can't understand,
---asking mother for a hug in the middle of an emotional breakdown while upset mother doesn't know to hug in the first place,
---not crying when mother died because she was so mean and experiencing granddaughter's tears of said mother/grandmother,
---being young with these conditions and making decisions about marriage and children,
---watching friends and family our age go on with their lives while grieving we cannot keep up with them,
---how healing may go up and down the family line of ancestors and parents to children and their children with simple acts of courage in our own little lives even if we were forced by our therapists to act (about abuse),
---and a lovely poem of appreciation for strangers who offer help (printed below),
---women talking about many women's issues so, was it coincidence no men called?,
---or, maybe men did call and never introduced themselves?


POEM
"The Other Side of Fear"

Written after a bout with breast cancer... but before CFIDS, this poem is the only piece of writing  Valerie has ever changed after having it published.  In addition to reading it for us, she told us on the EGG call that the CFIDS is what taught her the last verse...   Its from the book, A Time for Healing.




January 11, 2007 10 PM- International Thank You Day Conference Call

Wow, 10 pm is really late for some of us, but somehow it was still worth it with yawns. Our Hawaii member, 5 hours behind us, really liked that time.




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Updated April 25, 2007