CEFSFB : Messages : 423-452 of 907

Hello Everyone,

I just met a woman named Jennifer, in a class, who is familiar with this site, and told me that you have a support group on Saturdays, in Mountain View. I understand it if I will need to be evaluated, to see if I'm a good fit for the C.F.S. support group. Who should I contact, regarding the details of this group? Is there a fee involved?

Also was wondering if anyone else knows Jennifer? She gave me her contact info, today, and I can't find it anywhere! My brain is not working properly, as I'm sure all of you can relate to.

Hope to meet some of you, soon. Jennifer is the first acquaintance I have connected with, who actually has the Chronic Fatigue Syndrome. My friends that I know well, are all healthy, and some of them don't believe that anything physical is wrong with me. Are any of you, severely fatigued, from morning to night? My fatigue never seems to lift, much. I've dealt with it, for 30 years. It would be wonderful to know people, who are sensitive to what this disease is like, and who I can listen to, and give support to.

Hang in there.

Warmly, Wendy

--- On Fri, 1/30/09, Deborah Temple <deborahtemple@...> wrote:

From: Deborah Temple <deborahtemple@...>
Subject: Re: [CEFSFB] Something to share
To: CEFSFB@yahoogroups.com
Date: Friday, January 30, 2009, 5:16 PM

Brilliant, Franky! Thank you, bless you~ Deborah T.

--- On Wed, 1/28/09, franky dreamer <frankydreamer@ yahoo.com> wrote:

Hello Friends,

I don't know about you all, but I have been down and out recently with my health. But I am really trying to keep my spirits bright. I have been trying to bridge the CFS, Fibro and Lyme communities online. I know that there are significant differences between these "invisible diseases", but there are also so many similarities. And I think that there really is power in numbers. Anyway, I made a little encouraging video that I wanted to share with you.

LINK:
http://www.youtube. com/watch? v=qIn33Ffdjac

I am so deeply grateful for all of your friendship and your strength. Wishing everyone greatness...

Franky :-)

#451

From: Deborah Temple <deborahtemple@...>
Date: Sat Jan 31, 2009 1:16 am
Subject: Re: Something to share

deborahtemple

Offline

Brilliant, Franky! Thank you, bless you~ Deborah T.

--- On Wed, 1/28/09, franky dreamer <frankydreamer@...> wrote:

Hello Friends,

I don't know about you all, but I have been down and out recently with my health. But I am really trying to keep my spirits bright. I have been trying to bridge the CFS, Fibro and Lyme communities online. I know that there are significant differences between these "invisible diseases", but there are also so many similarities. And I think that there really is power in numbers. Anyway, I made a little encouraging video that I wanted to share with you.

LINK:
http://www.youtube. com/watch? v=qIn33Ffdjac

I am so deeply grateful for all of your friendship and your strength. Wishing everyone greatness...

Franky :-)

#450

From: Deborah Temple <deborahtemple@...>
Date: Fri Jan 30, 2009 10:45 pm
Subject: Re: Myofascial Treatment Presentation

deborahtemple

Offline

Sharon! You ARE the resource queen!!! Thank you!! Deborah ( :

--- On Fri, 1/30/09, Sharon P <hosnar@...> wrote:

On Feb 2nd at the RSI support group. Other pain management talks in the future. Go here for more info. http://sf-rsi. unsealed. net/

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#449

From: "D. G. Khattab & K. Siegel" <dgkks@...>
Date: Fri Jan 30, 2009 6:47 pm
Subject: Re: Myofascial Treatment Presentation

debrasciafu

Offline

Thanks for sharing this information. I'm not sure it will work in our family schedule, but some of the subjects completely go along with having FM & CFIDS, so I'm going to try to see whether my son and I can go to some of them. DGK

Debra Grace Khattab & Ken Siegel
Homeschooling Jeremy (17) & Vanyel (13) Siegel
http://mamasciaf.livejournal.com/
http://groups.yahoo.com/group/MGIFamilyClub/

Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme Commander of the Intergalactic Allied Forces, Horsehead Nebula bound

"I always wanted to be a writer, but Alan Moore's work and help inspired me to write comics. In some ways the biggest influence on me writing was Punk. There was the idea that you could do something by simply doing it." ~Neil Gaiman
"Metaphors have a way of holding the most truth in the least space." ~Orson Scott Card
"You must stay drunk on writing so reality cannot destroy you." ~Ray Bradbury
"Writing is easy: All you do is sit staring at a blank sheet of paper until drops of blood form on your forehead." ~Gene Fowler

--- On Thu, 1/29/09, Sharon P <hosnar@...> wrote:

From: Sharon P <hosnar@...>
Subject: [CEFSFB] Myofascial Treatment Presentation
To: "CEFSFB Yahoo" <cefsfb@yahoogroups.com>
Date: Thursday, January 29, 2009, 8:59 PM

On Feb 2nd at the RSI support group. Other pain management talks in the future. Go here for more info. http://sf-rsi. unsealed. net/

Windows Live� Hotmail�:�more than just e-mail. Check it out.

#448

From: Sharon P <hosnar@...>
Date: Fri Jan 30, 2009 4:59 am
Subject: Myofascial Treatment Presentation

hosnar

Offline

On Feb 2nd at the RSI support group. Other pain management talks in the future. Go here for more info. http://sf-rsi.unsealed.net/

Windows Live� Hotmail�:�more than just e-mail. Check it out.

#447

From: "D. G. Khattab & K. Siegel" <dgkks@...>
Date: Wed Jan 28, 2009 11:39 pm
Subject: Re: Something to share

debrasciafu

Offline

Thanks Franky, that was a neat thing to put together and put out there for everybody. I've been working at keeping my spirits up also while coping with fatigue that hasn't really let up since last month. At the same time I've been writing more, both poetry and fiction. I think I've become so frustrated with the periods of complete exhaustion and brain fog, that when I'm clearheaded I'm writing a lot more than normal to try to get as much done as possible before the next collapse.
Debra Grace Khattab

Debra Grace Khattab & Ken Siegel
Homeschooling Jeremy (17) & Vanyel (13) Siegel
http://mamasciaf.livejournal.com/
http://groups.yahoo.com/group/MGIFamilyClub/

Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme Commander of the Intergalactic Allied Forces, Horsehead Nebula bound

"I always wanted to be a writer, but Alan Moore's work and help inspired me to write comics. In some ways the biggest influence on me writing was Punk. There was the idea that you could do something by simply doing it." ~Neil Gaiman
"Metaphors have a way of holding the most truth in the least space." ~Orson Scott Card
"You must stay drunk on writing so reality cannot destroy you." ~Ray Bradbury
"Writing is easy: All you do is sit staring at a blank sheet of paper until drops of blood form on your forehead." ~Gene Fowler

--- On Wed, 1/28/09, franky dreamer <frankydreamer@...> wrote:

From: franky dreamer <frankydreamer@...>
Subject: [CEFSFB] Something to share
To: CEFSFB@yahoogroups.com
Date: Wednesday, January 28, 2009, 1:57 PM

Hello Friends,

I don't know about you all, but I have been down and out recently with my health. But I am really trying to keep my spirits bright. I have been trying to bridge the CFS, Fibro and Lyme communities online. I know that there are significant differences between these "invisible diseases", but there are also so many similarities. And I think that there really is power in numbers. Anyway, I made a little encouraging video that I wanted to share with you.

LINK:
http://www.youtube. com/watch? v=qIn33Ffdjac

I am so deeply grateful for all of your friendship and your strength. Wishing everyone greatness...

Franky :-)

#446

From: franky dreamer <frankydreamer@...>
Date: Wed Jan 28, 2009 9:57 pm
Subject: Something to share

frankydreamer

Offline

Hello Friends,

I don't know about you all, but I have been down and out recently with my health. But I am really trying to keep my spirits bright. I have been trying to bridge the CFS, Fibro and Lyme communities online. I know that there are significant differences between these "invisible diseases", but there are also so many similarities. And I think that there really is power in numbers. Anyway, I made a little encouraging video that I wanted to share with you.

LINK:
http://www.youtube.com/watch?v=qIn33Ffdjac

I am so deeply grateful for all of your friendship and your strength. Wishing everyone greatness...

Franky :-)

#445

From: Sharon P <hosnar@...>
Date: Wed Jan 28, 2009 8:18 pm
Subject: FW: IACFS/ME March Conference in Reno

hosnar

Offline

9th International IACFS/ME
Research and Clinical Conference
March 12-15, 2009

Latest Advances in Virology, Genetics, Pediatrics,
Brain Functioning, Epidemiology, Treatment and Assessment

23 AMA PRA Category 1 CME Credits�

Peppermill Resort, Reno, Nevada, USA

www.iacfsme.org

IMPORTANT NOTICE

Register NOW - Early registration indicates that we will have a record number of attendees participating. Hotel availability is becoming limited. Visit www.iacfsme.org to register and for full conference details.

Conference Offers:

Latest clinical research
Treatment protocols and updates
Internationally recognized faculty
Educational Poster sessions with oral discussions
Networking with peers and leaders in the field
Awards Banquet
Concurrent one day Patient Conference

Curriculum Includes Sessions On:

Fatigue
Pharmacologic / Non-Pharmacologic Treatment
Epidemiology
Neuroendocrine
Difficult Clinical Cases
Infectious Disease
Immunology
Assessment from Biological to Behavioral
Pediatric ME/CFS
Genomics
Genetics
Brain Function
Integrative Approach
Workshops on: Grants, Treating Sleep, Pain & Fatigue, Behavioral Assessment and Treatment, Research 101

Awards Reception and Banquet

Saturday evening will include a networking cocktail reception followed by the IACFS/ME Banquet which will include the presentation of the Rudy Perpich Award, the Junior Investigator Award, Nelson Gant Clinician Award, Special Service Award and Research Awards. The Reception and Banquet are included in the regular Professional Conference registration. Patients, students and guests are welcome and can purchase tickets at www.iacfsme.org.

Fundraising Reception

A special fund raising reception sponsored by the Whittemore-Peterson Institute will be held on Friday evening. John A. Kitzhaber, MD, former Governor of Oregon will be the guest of honor. To support our cause with a donation or to purchase a ticket please visit www.iacfsme.org

Exhibit Hall

Discover the latest products and services and visit industry leading companies in the exhibit area. The IACFS/ME thanks them for their support.

Patient Conference March 12, 2009

This Conference intended for Patients, Caregivers, Students and CFS / FM Advocates will consist of sessions designed exclusively to better understand the difficult health issues persons with CFS/FM are faced with daily. These include:

New Developments in Possible Causes of ME/CFS
New Research on What Helps People Cope with ME/CFS
Latest Researches on the Pathophysiology of ME/CFS
Assessing ME/CFS Brain Functioning
New Developments in Pharmacologic Treatments
Panel Question & Answer Session

Please visit www.iacfsme.org for additional information.

About IACFS/ME

The mission of the IACFS/ME is to promote, stimulate and coordinate the exchange of ideas related to CFS, ME and fibromyalgia (FM) research, patient care and treatment. In addition, the IACFS/ME periodically reviews the current research and treatment literature and media reports for the benefit of scientists, clinicians and patients. The IACFS/ME also conducts and/or participates in local, national, and international scientific conferences in order to promote and evaluate new research and to encourage future research ventures and cooperative activities to advance scientific and clinical knowledge of these illnesses.

The IACFS/ME shall at all times be organized and operated exclusively for charitable, scientific, literary or educational purposes as a qualified exempt organization described under section 501 (c) (3) of the Internal Revenue code of 1986 and the regulations promulgated there under as they may now exist or as they may be hereafter amended.

Join IACFS/ME

Take advantage of membership discounts and benefits now! Join today with your conference registration and receive the member discounted attendee rates. The IACFS is comprised of healthcare clinicians and researchers, students, support groups, patients and their families who all share a common interest in education, patient care and research on CFS/ME and related illnesses. Membership benefits include a quarterly IACFS/ME e-Bulletin, IACFS/ME e-Newsletter, discounted Conference registration, listing in Membership Directory and access to Members section of the IACFS/ME website, www.iacfsme.org. Can't attend Conference? Join online at www.iacfsme.org.

The International Association for CFS/ME

27 N. Wacker Drive Suite 416
Chicago, IL 60606
admin@...

If you no longer wish to receive these emails, please reply to this message with "Unsubscribe" in the subject line or simply click on the following link: Unsubscribe

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#444

From: S Falcone <bekindbecause@...>
Date: Mon Jan 26, 2009 9:13 pm
Subject: Re: Meet for Coffee, Meditation, and Free Reiki

stephmgf

Offline

Hi. Going to San Fran. takes a whole lot out of me, but if you ever have something similar in the east bay, count me in : ) Stephanie

On 1/24/09, Sharon P <hosnar@...> wrote:

I'd like to meet more folks on this list, and was wondering if folks would be up for meeting for coffee, going to a song and meditation service, and getting free reiki afterwards on Wed 2/4.

Recently I've developed an interest in exploring my spiritual side, both in reaction to getting older and living w/ a chronic illness. A few weeks ago I went to Taize, this fabulous singing and meditation service at the Metropolitan Community Church in the Castro. The musicians and a choir were incredible. Although it is a Christian church, the meditation service seemed open to many disciplines. There were Hebrew and Spanish songs, and not a single reference to Christ, but many references to "goddesses." (However, I cannot promise that every service will be this way.)

More info about Taize is here
http://www.mccsf.org/taize.html Donations are requested but not required. BTW, MCC is primarily composed of gay men, but the lead pastor is female, as well as the music director. All seemed very friendly.

On the first Wed of every month, they also offer free reiki after the service. You do have to sign up ahead of time here. You may have to scroll down to healing taize http://www.fleshandspirit.org/

For those of you who aren't familiar, here's a description of Reiki.
Reiki (霊気 or レイキ, Reiki^? IPA: /ˈreɪkiː/) is a spiritual practice^[1] developed in 1922 by Mikao Usui. After three weeks of fasting and meditating on Mount Kurama, in Japan, Usui claimed to receive the ability of "healing without energy depletion".^[2] A portion of the practice, tenohira or palm healing, is used as a form of complementary and alternative medicine (CAM).^[3]^[4] Tenohira is a technique whereby practitioners believe they are moving "healing energy" (a form of ki) through the palms.^[5]^[6]
Neither the existence of ki nor any mechanism for its manipulation are scientifically proven, and a systematic review of randomized clinical trials conducted in 2008 did not support the efficacy of reiki or its recommendation for use in the treatment of any condition.^[7]^[8]

Sharon

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"Our task must be to widen our circle of compassion to embrace all living creatures and the whole of nature in its beauty." Albert Einstein

"The greatness of a nation and its moral progress can be judged by the ways its animals are treated." Mahatma Gandhi

#443

From: S Falcone <bekindbecause@...>
Date: Mon Jan 26, 2009 9:06 pm
Subject: Re: CFIDS/FM Speed Dating and Friend Making

stephmgf

Offline

Hi. I am interested in the friend-making aspect of this. I too have lost healthy friends to cfids. Stephanie

On 1/24/09, Sharon P <hosnar@...> wrote:

I would like to gauge interest in doing this in the future. The rationale is that there is a great deal of strain in our relationships with the physically healthy people in our lives. Over and over in meetings I hear about people breaking up w/ their spouses and friends bc/ of our illnesses.

In my personal experience in dating someone w/ CFIDS and being friends w/ them, I found that our life styles were highly compatible. In my dating experience, we took lots of naps, and were perfectly happy staying in all day. We were like our own support group -constantly sharing our feelings about being sick, and supporting each other. We felt like we were "normal" and that everyone else was "hyper."

If we have this, it will be in the 2nd hour of the SF in-person meeting (details below) at a future date that hasn't been determined. Please let me know if this is something that you would be likely to go to. Please also note your age and sexual orientation so I can figure out if there are enough people for each group (straight, gay, etc.)

Sharon

Meeting Info
The San Francisco Fibromyalgia (FM) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Self-Help and Advocacy Group meets on the 2nd Saturday every month, from 2-4. This takes place in rm. B1 or B2/3 (they are right next to each other) at the Davies Campus of CPMC (address below). There is no fee for this group. Donations are optional.

This group is for people with FM,CFIDS, and/or chronic myofascial pain - or those who think they may have one of these disorders. Friends and family are also welcome. Observers, such as healthcare providers, may attend if they identify themselves as such.

Location: Davies Campus of the California Pacific Medical Center, at Castro St. and Duboce St. Enter the North tower, take the elevator to level B. Parking in the garage is free. Take a ticket when you enter and insert it into the slot when you leave. You will not be charged. Sometimes a ticket is not given when entering. If that is the case, you still won't be charged. Public transportation: N, J, 22, 24, 6, 7, 66, 71. Wheelchair accessible.

This is a ***FRAGRANCE FREE*** meeting. And please DO NOT come to the meeting if you are CONTAGIOUS.

Those who come are encouraged to stand, walk around, or whatever they need to do, in order to be comfortable. Bring a sheet if you need to lay down.

Our group purpose is multi-fold. The main reason we meet is for emotional support, but self-help, education, and political advocacy go hand-in-hand. Our focus will be on what we CAN do to improve our health and functionality. Our medical treatment options may be limited, but what we can do about it is NOT. We do this in the following ways:
� by supporting each other, and sharing our experiences, strength, and hope
� by sharing information about doctors, health care providers, and other resources � by using political advocacy to increase research into treatments, and raise awareness about FM
� and by following the CFIDS and FM Self-Help program created by Bruce Campbell

The meeting adopts part of it's format from the CFIDS/FM Self-Help Support Group format, based in cognitive behavioral therapy and created by Bruce Campbell Ph.D. Here is Campbell's description of the program:

FM changes every part of our lives: how much we can do, our ability to work, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are. Adding to the challenge is the fact that it is a chronic illness, with no cure or standard medical treatment. Living with this illness can often feel overwhelming and discouraging.

The CFIDS & FM Self-Help program was developed as a response. The program is based on belief in the value of self-help: we can learn how to feel better and increase our chances for recovery by taking responsibility for the parts of our illness over which we have control. It is also based on belief in the power of groups: we can help ourselves and one another by meeting to discuss our experience, and share hope and support with one another.

We believe there is much we can do to limit the effects of symptoms, to bring predictability, and to improve quality of life. Strategies include:
- finding and accepting the limits imposed by the illness
- pacing ourselves through balancing activity and rest
- reducing the stresses in our lives
- using medications
- nurturing ourselves through positive and pleasurable experiences
- sustaining ourselves through supportive relationships
- maintaining a positive outlook ***

To learn more about this program, go to http://www.cfidsselfhelp.org/.

There is always sharing in the first part of the meeting. What we do in the second part will always change. Possibilities. Workshops; general discussions; reading; FM awareness day activities, including letter writing campaigns, and interviews with the media; show and tell (bring in something that you have found helpful, i.e. massage tools, a special kind of heating pad); potluck; poetry/literature reading; topic discussion; speaker; planning meetings with local elected officials.

Please make an effort to be on time to the meeting, as late arrivals can be disruptive, especially to those who are sharing. It's better that you come to the meeting late, than not at all, but please make a concerted effort to come on time.

To receive meeting notices, get on the group's email list by send a blank email to SFFSSG-subscribe@yahoogroups.com. You will receive an email with a link that you will need to click in order to confirm your subscription. You can also get on the email list by going to
http://health.groups.yahoo.com/group/SFFSSG/. Please note that this is an mail newsletter, ***NOT*** an email discussion group. This email list will only have administrative messages to the group. If you are planning to go to meetings, I strongly suggest that you get on the email list so that you can receive important notices. While meeting times and location will probably be the same every month, they are subject to change. If, and only if, you don't have email, call Cosi 415 564 2275 or Deborah 415 332 5279.

Please note that by being on the SFFSSG email list, you will only receive info about the meeting. If you want to receive info about events, announcements and discussion about CFIDS, Environmental Illness, and FM in the Bay Area, sign up for my email discussion group at http://health.groups.yahoo.com/group/CEFSFB

Questions, comments, suggestions: Email hosnar@..., or if you don't have email, call phone contacts. Please don't be offended if I take a while to respond to emails or not at all. I get A LOT of inquiries and I'm doing the best I can. Again, my email discussion group is a great place to get info about the Bay Area.

Sharon P.
aka knotty girl

***--From CFIDS Self-Help: Materials for Alumni/On-going Groups by Bruce Campbell. Campbell also offers a free on-line course, and sometimes an in-person course. Phone: 650/856-2109. email:CFIDS_Self_Help@... Website: www.cfidsselfhelp.org.

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#442

From: "Sarah Glaubman" <sglaubman@...>
Date: Mon Jan 26, 2009 8:42 pm
Subject: Re: Meet for Coffee, Meditation, and Free Reiki

ssglaubman

Offline

--- In CEFSFB@yahoogroups.com, Deborah Temple <deborahtemple@...> wrote:

I'd also like to come if I can. Where and when are you planning to meet up?

Thanks
Sarah

>
> I'd like to meet more folks on this list, and was wondering if folks would be
up for meeting
for coffee, going to a song and meditation service, and getting free reiki
afterwards on Wed
2/4.

#441

From: Deborah Temple <deborahtemple@...>
Date: Mon Jan 26, 2009 4:12 am
Subject: Re: Meet for Coffee, Meditation, and Free Reiki

deborahtemple

Offline

Hi Everyone~ just scanned this quickly but want to let folks know I've had great success w/Reiki~ which I was doing almost weekly for almost a year. It really helped w/pain and energy, altho' I almost always had a 'healing reaction' afterwards~ which would last maybe a day or two~ but that was after an intense, individual session that lastest for almost an hour. I'm a big fan of Reiki, so if anyone is tempted, consider giving it a try.

Well-wishes, Deborah T.

--- On Sun, 1/25/09, Sharon P <hosnar@...> wrote:

From: Sharon P <hosnar@...>
Subject: [CEFSFB] Meet for Coffee, Meditation, and Free Reiki
To: "CEFSFB Yahoo" <cefsfb@yahoogroups.com>
Date: Sunday, January 25, 2009, 3:51 AM

I'd like to meet more folks on this list, and was wondering if folks would be up for meeting for coffee, going to a song and meditation service, and getting free reiki afterwards on Wed 2/4.

Recently I've developed an interest in exploring my spiritual side, both in reaction to getting older and living w/ a chronic illness. A few weeks ago I went to Taize, this fabulous singing and meditation service at the Metropolitan Community Church in the Castro. The musicians and a choir were incredible. Although it is a Christian church, the meditation service seemed open to many disciplines. There were Hebrew and Spanish songs, and not a single reference to Christ, but many references to "goddesses." (However, I cannot promise that every service will be this way.)

More info about Taize is here
http://www.mccsf. org/taize. html Donations are requested but not required. BTW, MCC is primarily composed of gay men, but the lead pastor is female, as well as the music director. All seemed very friendly.

On the first Wed of every month, they also offer free reiki after the service. You do have to sign up ahead of time here. You may have to scroll down to healing taize http://www.fleshand spirit.org/

For those of you who aren't familiar, here's a description of Reiki.
Reiki (霊気 or レイキ, Reiki^? IPA: /ˈreɪkiː/) is a spiritual practice^[1] developed in 1922 by Mikao Usui. After three weeks of fasting and meditating on Mount Kurama, in Japan, Usui claimed to receive the ability of "healing without energy depletion".^[2] A portion of the practice, tenohira or palm healing, is used as a form of complementary and alternative medicine (CAM).^[3]^[4] Tenohira is a technique whereby practitioners believe they are moving "healing energy" (a form of ki) through the palms.^[5]^[6]
Neither the existence of ki nor any mechanism for its manipulation are scientifically proven, and a systematic review of randomized clinical trials conducted in 2008 did not support the efficacy of reiki or its recommendation for use in the treatment of any condition.^[7]^[8]

Sharon

Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

#440

From: Sharon P <hosnar@...>
Date: Mon Jan 26, 2009 12:16 am
Subject: Help Needed w/ Find Kaiser Doctors, and Support Needed fo Pain

hosnar

Offline

Please welcome Jessica to the group and help her if you can.
"I would like to know any good Kaiser doctors, preferably in Oakland. I would like to know what others do to keep from thinking about their pain all day and/or having it effect almost their every waking moment. Also wondering if anyone else has IBS and TMJ along with fibromyalgia."

Hey Jessica,

I used to had a lhasa apso as a kid. They are a bit high strung but I love them anyway. Hope you can make it to the SF mtg sometime. And I hope you get some help w/ your requests.

Sharon

From: dnaleri19@...
To: cefsfb-owner@yahoogroups.com
Subject: RE: File - Subscription Request Questions
Date: Sun, 25 Jan 2009 01:52:00 -0600
>
> *1) Name Jessica
> *2) Age 27
> *3) What medical conditions do you have, or think you may have? Fibromyalgia
> *4)Are you the friend or family of someone w/ one of these illnesses? Not that I know of.
> *5) Male/female female
> 6) Town or City you live in Berkeley
> 7) Ethnicity caucasian
> 8) Sexual orientation/Gender Identity (I ask this question bc/ many gay, lesbian, and transgendered people w/ these illnesses have expressed that they feel more comfortable in groups like this, if they know that there are others like them in it. I am a lesbian.) straight
> 9) Level of functionality - i.e. homebound - unable to cook or clean for self, able to get out a few days in a week, work part-time, work full-time work/school full-time
> 10) Questions you have for the group i.e. "does anyone have a good rheumatologists who knows how to treat FM," "does anyone have a good Kaiser doctor," "would anyone like a walking buddy," "would anyone like a phone buddy" I would like to know any good Kaiser doctors, preferably in Oakland. I would like to know what others do to keep from thinking about their pain all day and/or having it effect almost their every waking moment. Also wondering if anyone else has IBS and TMJ along with fibromyalgia.
> 11) Interests you have that have nothing to do w/ your illness(es) I am in biblical studies and am also an atheist so that's always fun to discuss with new folks :). I love movies...funny and/or with something blowing up. I love football-go Vikings!
> 12) Anything else you want to say about yourself.
I'm originally from Iowa. I have a 4.5 year old lhasa apso named Molly. I'm currently working on my third master's degree because I have nothing better to do with my time and wish to aquire a massive debt :). I have five tattoos one which I got in Costa Rica two years ago.
>
> We appreciate the interest of healthcare providers, but they are not allowed to join this list unless they have one of these illnesses and are joining for personal reasons. But we are glad to forward your info to the group. If you would like to make your services known to the people on the list, email your info to CEFSFB-owner@yahoogroups.com, and it will be forwarded to the group. You may do this once a year.
>
> Sharon
> Group list owner
>

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#439

From: wendy bloom <bloom_art67@...>
Date: Sun Jan 25, 2009 5:17 am
Subject: Re: Meet for Coffee, Meditation, and Free Reiki

bloom_art67

Offline

Hi Sharon.

That sounds really interesting, and inspiring. I've also become more oriented towards my spirituality, as the years have passed, and I've gotten older(and hopefully wiser?) I'm taking an amazing meditation course, through the Stanford Center for Integrative Medicine. I would recommend it highly to anyone, but especially to people who have had to cope for years with chronic illnesses that doctors can do little, about.

I wrote once, quite a long time ago, but have never been involved in this group. Your subject line, truly caught my attention. Thanks. I'll try to make it there. I live in the South Bay, so it is quite tiring to get to the city.

Best wishes, Wendy

--- On Sat, 1/24/09, Sharon P <hosnar@...> wrote:

From: Sharon P <hosnar@...>
Subject: [CEFSFB] Meet for Coffee, Meditation, and Free Reiki
To: "CEFSFB Yahoo" <cefsfb@yahoogroups.com>
Date: Saturday, January 24, 2009, 7:51 PM

I'd like to meet more folks on this list, and was wondering if folks would be up for meeting for coffee, going to a song and meditation service, and getting free reiki afterwards on Wed 2/4.

Recently I've developed an interest in exploring my spiritual side, both in reaction to getting older and living w/ a chronic illness. A few weeks ago I went to Taize, this fabulous singing and meditation service at the Metropolitan Community Church in the Castro. The musicians and a choir were incredible. Although it is a Christian church, the meditation service seemed open to many disciplines. There were Hebrew and Spanish songs, and not a single reference to Christ, but many references to "goddesses." (However, I cannot promise that every service will be this way.)

More info about Taize is here
http://www.mccsf. org/taize. html Donations are requested but not required. BTW, MCC is primarily composed of gay men, but the lead pastor is female, as well as the music director. All seemed very friendly.

On the first Wed of every month, they also offer free reiki after the service. You do have to sign up ahead of time here. You may have to scroll down to healing taize http://www.fleshand spirit.org/

For those of you who aren't familiar, here's a description of Reiki.
Reiki (霊気 or レイキ, Reiki^? IPA: /ˈreɪkiː/) is a spiritual practice^[1] developed in 1922 by Mikao Usui. After three weeks of fasting and meditating on Mount Kurama, in Japan, Usui claimed to receive the ability of "healing without energy depletion".^[2] A portion of the practice, tenohira or palm healing, is used as a form of complementary and alternative medicine (CAM).^[3]^[4] Tenohira is a technique whereby practitioners believe they are moving "healing energy" (a form of ki) through the palms.^[5]^[6]
Neither the existence of ki nor any mechanism for its manipulation are scientifically proven, and a systematic review of randomized clinical trials conducted in 2008 did not support the efficacy of reiki or its recommendation for use in the treatment of any condition.^[7]^[8]

Sharon

Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

#438

From: Sharon P <hosnar@...>
Date: Sun Jan 25, 2009 4:14 am
Subject: CFIDS/FM Speed Dating and Friend Making

hosnar

Offline

I would like to gauge interest in doing this in the future. The rationale is that there is a great deal of strain in our relationships with the physically healthy people in our lives. Over and over in meetings I hear about people breaking up w/ their spouses and friends bc/ of our illnesses.

In my personal experience in dating someone w/ CFIDS and being friends w/ them, I found that our life styles were highly compatible. In my dating experience, we took lots of naps, and were perfectly happy staying in all day. We were like our own support group -constantly sharing our feelings about being sick, and supporting each other. We felt like we were "normal" and that everyone else was "hyper."

If we have this, it will be in the 2nd hour of the SF in-person meeting (details below) at a future date that hasn't been determined. Please let me know if this is something that you would be likely to go to. Please also note your age and sexual orientation so I can figure out if there are enough people for each group (straight, gay, etc.)

Sharon

Meeting Info
The San Francisco Fibromyalgia (FM) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) Self-Help and Advocacy Group meets on the 2nd Saturday every month, from 2-4. This takes place in rm. B1 or B2/3 (they are right next to each other) at the Davies Campus of CPMC (address below). There is no fee for this group. Donations are optional.

This group is for people with FM,CFIDS, and/or chronic myofascial pain - or those who think they may have one of these disorders. Friends and family are also welcome. Observers, such as healthcare providers, may attend if they identify themselves as such.

Location: Davies Campus of the California Pacific Medical Center, at Castro St. and Duboce St. Enter the North tower, take the elevator to level B. Parking in the garage is free. Take a ticket when you enter and insert it into the slot when you leave. You will not be charged. Sometimes a ticket is not given when entering. If that is the case, you still won't be charged. Public transportation: N, J, 22, 24, 6, 7, 66, 71. Wheelchair accessible.

This is a ***FRAGRANCE FREE*** meeting. And please DO NOT come to the meeting if you are CONTAGIOUS.

Those who come are encouraged to stand, walk around, or whatever they need to do, in order to be comfortable. Bring a sheet if you need to lay down.

Our group purpose is multi-fold. The main reason we meet is for emotional support, but self-help, education, and political advocacy go hand-in-hand. Our focus will be on what we CAN do to improve our health and functionality. Our medical treatment options may be limited, but what we can do about it is NOT. We do this in the following ways:
� by supporting each other, and sharing our experiences, strength, and hope
� by sharing information about doctors, health care providers, and other resources � by using political advocacy to increase research into treatments, and raise awareness about FM
� and by following the CFIDS and FM Self-Help program created by Bruce Campbell

The meeting adopts part of it's format from the CFIDS/FM Self-Help Support Group format, based in cognitive behavioral therapy and created by Bruce Campbell Ph.D. Here is Campbell's description of the program:

FM changes every part of our lives: how much we can do, our ability to work, our moods, our relationships, our finances, our hopes and dreams, and our sense of who we are. Adding to the challenge is the fact that it is a chronic illness, with no cure or standard medical treatment. Living with this illness can often feel overwhelming and discouraging.

The CFIDS & FM Self-Help program was developed as a response. The program is based on belief in the value of self-help: we can learn how to feel better and increase our chances for recovery by taking responsibility for the parts of our illness over which we have control. It is also based on belief in the power of groups: we can help ourselves and one another by meeting to discuss our experience, and share hope and support with one another.

We believe there is much we can do to limit the effects of symptoms, to bring predictability, and to improve quality of life. Strategies include:
- finding and accepting the limits imposed by the illness
- pacing ourselves through balancing activity and rest
- reducing the stresses in our lives
- using medications
- nurturing ourselves through positive and pleasurable experiences
- sustaining ourselves through supportive relationships
- maintaining a positive outlook ***

To learn more about this program, go to http://www.cfidsselfhelp.org/.

There is always sharing in the first part of the meeting. What we do in the second part will always change. Possibilities. Workshops; general discussions; reading; FM awareness day activities, including letter writing campaigns, and interviews with the media; show and tell (bring in something that you have found helpful, i.e. massage tools, a special kind of heating pad); potluck; poetry/literature reading; topic discussion; speaker; planning meetings with local elected officials.

Please make an effort to be on time to the meeting, as late arrivals can be disruptive, especially to those who are sharing. It's better that you come to the meeting late, than not at all, but please make a concerted effort to come on time.

To receive meeting notices, get on the group's email list by send a blank email to SFFSSG-subscribe@yahoogroups.com. You will receive an email with a link that you will need to click in order to confirm your subscription. You can also get on the email list by going to
http://health.groups.yahoo.com/group/SFFSSG/. Please note that this is an mail newsletter, ***NOT*** an email discussion group. This email list will only have administrative messages to the group. If you are planning to go to meetings, I strongly suggest that you get on the email list so that you can receive important notices. While meeting times and location will probably be the same every month, they are subject to change. If, and only if, you don't have email, call Cosi 415 564 2275 or Deborah 415 332 5279.

Please note that by being on the SFFSSG email list, you will only receive info about the meeting. If you want to receive info about events, announcements and discussion about CFIDS, Environmental Illness, and FM in the Bay Area, sign up for my email discussion group at http://health.groups.yahoo.com/group/CEFSFB

Questions, comments, suggestions: Email hosnar@..., or if you don't have email, call phone contacts. Please don't be offended if I take a while to respond to emails or not at all. I get A LOT of inquiries and I'm doing the best I can. Again, my email discussion group is a great place to get info about the Bay Area.

Sharon P.
aka knotty girl

***--From CFIDS Self-Help: Materials for Alumni/On-going Groups by Bruce Campbell. Campbell also offers a free on-line course, and sometimes an in-person course. Phone: 650/856-2109. email:CFIDS_Self_Help@... Website: www.cfidsselfhelp.org.

Windows Live� Hotmail��more than just e-mail. See how it works.

#437

From: Sharon P <hosnar@...>
Date: Sun Jan 25, 2009 3:51 am
Subject: Meet for Coffee, Meditation, and Free Reiki

hosnar

Offline

I'd like to meet more folks on this list, and was wondering if folks would be up for meeting for coffee, going to a song and meditation service, and getting free reiki afterwards on Wed 2/4.

Recently I've developed an interest in exploring my spiritual side, both in reaction to getting older and living w/ a chronic illness. A few weeks ago I went to Taize, this fabulous singing and meditation service at the Metropolitan Community Church in the Castro. The musicians and a choir were incredible. Although it is a Christian church, the meditation service seemed open to many disciplines. There were Hebrew and Spanish songs, and not a single reference to Christ, but many references to "goddesses." (However, I cannot promise that every service will be this way.)

More info about Taize is here
http://www.mccsf.org/taize.html Donations are requested but not required. BTW, MCC is primarily composed of gay men, but the lead pastor is female, as well as the music director. All seemed very friendly.

On the first Wed of every month, they also offer free reiki after the service. You do have to sign up ahead of time here. You may have to scroll down to healing taize http://www.fleshandspirit.org/

For those of you who aren't familiar, here's a description of Reiki.
Reiki (霊気 or レイキ, Reiki^? IPA: /ˈreɪkiː/) is a spiritual practice^[1] developed in 1922 by Mikao Usui. After three weeks of fasting and meditating on Mount Kurama, in Japan, Usui claimed to receive the ability of "healing without energy depletion".^[2] A portion of the practice, tenohira or palm healing, is used as a form of complementary and alternative medicine (CAM).^[3]^[4] Tenohira is a technique whereby practitioners believe they are moving "healing energy" (a form of ki) through the palms.^[5]^[6]
Neither the existence of ki nor any mechanism for its manipulation are scientifically proven, and a systematic review of randomized clinical trials conducted in 2008 did not support the efficacy of reiki or its recommendation for use in the treatment of any condition.^[7]^[8]

Sharon

Windows Live™: E-mail. Chat. Share. Get more ways to connect. See how it works.

#436

From: Sharon P <hosnar@...>
Date: Wed Jan 21, 2009 4:26 pm
Subject: Paid Study - California Bay Area Chronic Pain Study

hosnar

Offline

Please contact them directly research@...
==============================================================================

Chronic Pain Research Study (paid clinical trial) (menlo park)Reply to:
see belowDate: 2009-01-15, 2:51PM PSTChronic Pain Patients needed for
Research Study include: low back pain, disc degeneration, fibromyalgia,
CRPS, neuropathy, arthritis, and other chronic pain conditions.
Omneuron, a clinical trial research company, is currently inviting
chronic pain patients to participate in a study to investigate a
treatment for pain that uses newly developed brain imaging methods to
train participants to control their own brain activation. All
participants in this study will receive a new form of cognitive
training for controlling pain. A central goal of the study is to
measure the impact of a new form of cognitive strategies for pain
control on activations from brain regions involved in the experience of
pain. Participants will be scanned using functional MRI while they
employ cognitive strategies allowing the participant to view and
mediate their brain activity. Benefits to Participants � Access a newly
developed experimental brain imaging technology only available through
this study � Help with the research process of developing a potential
future treatment for chronic pain Eligibility Requirements 1. Men and
Women, ages 21-60 years 2. Clinically diagnosed chronic pain.
Verification from a medical Doctor is REQUIRED to participate. Some
example of diagnoses include: CRPS, RSD, neuropathy, neuralgia,
fibromyalgia, chronic low back pain or migraine. 3. Currently
prescribed medication to treat diagnosed pain condition. 4. No
implanted medical devices that are not compatible with MRI (spinal cord
stimulator/pump, pacemaker, surgical aneurysm clip, stents etc) 5. No
recent history of severe psychiatric illness 6. Weight less than 220
lbs. 7. Able to be scanned in MRI without claustrophobia 8. No facial
tattoos, non-removable metal implants, piercings, or extensive dental
work. 9. Not pregnant or having fertility treatments 10. Able to read
and understand English Additional screening criteria for MRI safety may
be required Procedure This is an experimental procedure and a
controlled trial. We cannot and do not imply that this study will lead
to a decrease in your pain. Location Participants MUST be able to
attend 12 sessions in Menlo Park, CA. 6 of the sessions involve an MRI
scan. We reimburse for travel time within the Bay Area. Compensation In
addition to extensive interaction with our knowledgeable research team,
eligible participants will receive cash compensation for their
participation (i.e. travel time, questionnaires, and all time in
scanner). For your time and inconvenience, you will be paid $25/hour
for the MRI portions of the study and $10/hour for all other times
related to the study. Sponsor The Principal Investigator on this
research study is Dr. Christopher deCharms, PhD. This study is
sponsored by Omneuron, Inc. and receives funding from the National
Institutes of Health.For more information and a brief eligibility
screening, please go to: www.chronicpainresearchstudy.com If you have
any questions, please email research@... * Compensation: $10h
for travel and paperwork, $25h for MRI scans * OK to highlight this job
opening for persons with disabilities * Principals only. Recruiters,
please don't contact this job poster. * Please, no phone calls about
this job! * Please do not contact job poster about other services,
products or commercial interests.

Hotmail� goes where you go. On a PC, on the Web, on your phone. See how.

#435

From: Deborah Temple <deborahtemple@...>
Date: Tue Jan 20, 2009 7:47 am
Subject: Re: Grouply Inviter No Longer in this Group

deborahtemple

Offline

Thanks, Sharon! Well-wishes~ Deborah T.

--- On Tue, 1/20/09, Sharon P <hosnar@...> wrote:

From: Sharon P <hosnar@...>
Subject: [CEFSFB] Grouply Inviter No Longer in this Group
To: "CEFSFB Yahoo" <cefsfb@yahoogroups.com>
Date: Tuesday, January 20, 2009, 1:05 AM

Just wanted folks to know that the guy who sent out the Grouply invites is no longer a member of this group. He did not respond to my request asking him whether he had CFIDS or FM, or was the friend or family of someone who was. Since that is a requirement of being on this list, he has been removed.

Sharon
group owner

Windows Live� Hotmail�: Chat. Store. Share. Do more with mail. Check it out.

#434

From: "D. G. Khattab & K. Siegel" <dgkks@...>
Date: Tue Jan 20, 2009 6:03 am
Subject: Re: Re: just checking in...

debrasciafu

Offline

I can so relate to the attitude of "at least this bad thing didn't happen" as sometimes I think it is about all I have to hang on to. We were told that the Neurontin was generic, so that should still be an affordable med to use for the FM pain, I'd ask about it if someone said otherwise. You know, I have quit trying to get help for some problems like when I injured my elbow, probably by overdoing it playing with my kids in the park, because I am so burnt out on fighting with Kaiser to get help. Sounds like you have a complicated life also so best of luck with your son, I personally hope he gets it together and stays with you as it doesn't sound like his Dad would be positive for anyone to be around, but I can understand having to set limits and stick to them. We've taken in people before and also had to set uncomfortable limits. We're hanging in there, but finding out that a friend just got laid off so his company doesn't have to deal with his major medical problems (heart operation and continued meds), and another friend just got all their tools and even the handmade trailer they were in stolen so they're not sure what work they can get since the spouse also has severe medical problems and FM due to a car accident. So what do you do when more and more of your friends are doing worse than you are and you're not doing so well either? It ssure feels like a depression is coming to me.
Debra Grace Khattab

Debra Grace Khattab & Ken Siegel
Homeschooling Jeremy (17) & Vanyel (13) Siegel
http://mamasciaf.livejournal.com/
http://groups.yahoo.com/group/MGIFamilyClub/

Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme Commander of the Intergalactic Allied Forces, Horsehead Nebula bound

"I always wanted to be a writer, but Alan Moore's work and help inspired me to write comics. In some ways the biggest influence on me writing was Punk. There was the idea that you could do something by simply doing it." ~Neil Gaiman
"Metaphors have a way of holding the most truth in the least space." ~Orson Scott Card
"You must stay drunk on writing so reality cannot destroy you." ~Ray Bradbury
"Writing is easy: All you do is sit staring at a blank sheet of paper until drops of blood form on your forehead." ~Gene Fowler

--- On Mon, 1/19/09, Melanie Phelps <mrsmoggles@...> wrote:

From: Melanie Phelps <mrsmoggles@...>
Subject: [CEFSFB] Re: just checking in...
To: CEFSFB@yahoogroups.com
Date: Monday, January 19, 2009, 1:43 AM

I used to play pogo.com games and crosswords (when I have them). OMG
Kaiser friggin sucks...we got hit big time and i cannot afford my meds
any longer that are name brand, i.e., insulin, nuerontin. and
hubbies...well, it is me that will need to take most flack. he needs
his meds to stabilize his moods.

now, as mom told hubby, it rains when it pours, or some such
thing...he got bit by a rottweiler last night. He refuses to go to
hospital despite owner saying he is unsure of the shots dog has had
recently. can anyone say stress?? now son, after crashing my car, has
his dad wooing him to come back. i am supposed to be ok with it...if
he goes, he won't be allowed back...i cannot handle it. and as if it
was all going good, my left hand has something going on with it. every
time i stretch or hold something the pad under index finger
burns...the muscle in there. can't go to doctor, besides all they
would say is yup i am sure you feel something but i don't see anything
so you must be good to go!!!

well, at least i can be thankful for what didn't happen...no dogs got
bit means no vet bills. son DID come home and if he leaves, it will be
ok back to no worries past my small world. mom and dad won't let me
live that down for a while...more stress, heart all broken and soul
crushed and i dunno what all else there is...wait, was talking
thankful!! got thru another day, made some bread that turned out
fairlly well, got my material cut for another quilt...what else? let
me dig deep. ummmm, ok oh yea, a nice nite outside.

i hope you are doing better. I wish I had some answers for you.
Sometimes we have to live day by day, hour by hour, minute by
minute...for my headaches i use ice on neck, cold water or ice chips,
excedrin migraine ( got generic and it works better than name brand,
go figure!), an eye cover for resting, and an ice pack with aromatic
herbs really helps...usually if i lay propped at 45-ish degree angle
and fall asleep with ice on back of neck and on forehead, i can
achieve a modicum of relief...mine can last up to 10 days. but there
was a lot of debate on whether i get cluster or migraines... go
figure!! i know something that soothes me and helps me to relax is
petting my cat or dog, which ever will sit next to me quietly!! oooo
and sometimes, light yoga poses or small stretching in bed ( so i
don't fall over since i get really off balance when headaches abound!!!)

take care, relax, deep breath and hang in there!!! ~ melanie

--- In CEFSFB@yahoogroups. com, "D. G. Khattab & K. Siegel" <dgkks@...>
wrote:
>
> I play games to keep myself distracted while I wait to recover from
severe fatigue (there are a lot of interesting games available online,
if anybody is interested, email me and I'll send you some links).� I'm
still wiped out, mostly from the stress of trying to rearrange stuff
in the house and deal with crises of varying kinds from vet visits to
trying to budget increased Kaiser costs into a tinier budget since my
partner made less last year due to the economy.� One thing that has
hit us the hardest is that Kaiser just increased non-generic drugs
with a $250 deductible per person per year so we had to pull out
teenage son off the drugs he was trying to use for his migraines and
put him on a generic drug because we just didn't have the money after
going broke paying for his dental surgery.� If anybody has any ideas
on what to do for migraines when combined with fibromyalgia, we'd be
interested as none of the drugs whether generic or not has done our
> son much good.� We actually managed to get the house decorated even
if we ran late and have a few people over, so the holidays managed to
be fun, but I'm glad they are over and hope the New Year will be
better than last year.
> Debra Grace Khattab
>
> Debra Grace Khattab & Ken Siegel
>
> Homeschooling Jeremy (17) & Vanyel (13) Siegel
>
> http://mamasciaf. livejournal. com/
>
> http://groups. yahoo.com/ group/MGIFamilyC lub/
>
>
>
> Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme
Commander of the Intergalactic Allied Forces, Horsehead Nebula bound
>
>
>
> "I always wanted to be a writer, but Alan Moore's work and help
inspired me to write comics. In some ways the biggest influence on me
writing was Punk. There was the idea that you could do something by
simply doing it." ~Neil Gaiman
>
> "Metaphors have a way of holding the most truth in the least space."
~Orson Scott Card
>
> "You must stay drunk on writing so reality cannot destroy you."
~Ray Bradbury
>
> "Writing is easy: All you do is sit staring at a blank sheet of
paper until drops of blood form on your forehead." ~Gene Fowler
>
> --- On Fri, 1/16/09, Melanie Phelps <mrsmoggles@ ...> wrote:
> From: Melanie Phelps <mrsmoggles@ ...>
> Subject: [CEFSFB] just checking in...
> To: CEFSFB@yahoogroups. com
> Date: Friday, January 16, 2009, 9:36 PM
>
>
>
>
>
>
>
>
>
>
>
> Gawd, a week in Vermont seemed a lifetime ago!!! I
managed to not be
>
> too laid up, but at my detriment it seems. Last 3 of the 6 days travel
>
> and visit, I couldn't eat, couldn't take meds, lost my meter for
>
> glucose and stomach heaved everything out!! Got home and had some
>
> broth and some chicken salad sandwiches and started feeling better
>
> tummy wise. Now today, (we got home on wednesday)I have been sleeping
>
> till noon this morning and went for a nap and slept thru hubby waking
>
> me!! Right now I have my legs propped and my sugars are under 200
>
> again...(took insulin immediately after finding tester and seeing it
>
> was 460-something! !)
>
>
>
> Oh well...anyone have some home remedy they do to recoup a bit??
>
>
>
> thanks, melanie
>

#433

From: Victor Steffens <vsadae@...>
Date: Tue Jan 20, 2009 5:54 am
Subject: Re: Share You Story to Help Increase Understanding about CFIDS

vsadae

Offline

Hello everyone and thanks to Sharon for the introduction.

My name is Victor Steffens and I have CFS. I am currently conducting a
phenomenological research study into the Lived Experience of CFS as part of my
doctoral dissertation.

If you have questions or are interested in the study please feel free to email
me at victor.steffens@... or vsadae@....

Otherwise, thanks for the nice welcome and I look forward to being a part of the
group.

Sincerely,

Victor Steffens


--- On Mon, 1/19/09, D. G. Khattab & K. Siegel <dgkks@...> wrote:

> From: D. G. Khattab & K. Siegel <dgkks@...>
> Subject: Re: [CEFSFB] Share You Story to Help Increase Understanding about
CFIDS
> To: CEFSFB@yahoogroups.com
> Date: Monday, January 19, 2009, 9:42 PM
> Does he want us to put stories here or to him directly? 
> And what exactly does he want to know?  I have filled out a
> lot of forms by this time and I know that there is quite a
> bit in my life that has either been influenced by or helped
> cause me to come down with chronic illnesses, so I'm not
> sure what he is interested in knowing about.  I also have
> written extensively about my life and illnesses in poetry
> and essay form over the years.
> Debra Grace Khattab
>
> Debra Grace Khattab & Ken Siegel
>
> Homeschooling Jeremy (17) & Vanyel (13) Siegel
>
> http://mamasciaf.livejournal.com/
>
> http://groups.yahoo.com/group/MGIFamilyClub/
>
>
>
> Ad Astra Ad Ultra SCIAF - Go to the stars and beyond
> Supreme Commander of the Intergalactic Allied Forces,
> Horsehead Nebula bound
>
>
>
> "I always wanted to be a writer, but Alan Moore's
> work and help inspired me to write comics.  In some ways the
> biggest influence on me writing was Punk.  There was the
> idea that you could do something by simply doing it."
> ~Neil Gaiman
>
> "Metaphors have a way of holding the most truth in the
> least space."  ~Orson Scott Card
>
> "You must stay drunk on writing so reality cannot
> destroy you."  ~Ray Bradbury
>
> "Writing is easy:  All you do is sit staring at a
> blank sheet of paper until drops of blood form on your
> forehead."  ~Gene Fowler
>
> --- On Mon, 1/19/09, Sharon P <hosnar@...>
> wrote:
> From: Sharon P <hosnar@...>
> Subject: [CEFSFB] Share You Story to Help Increase
> Understanding about CFIDS
> To: "CEFSFB Yahoo" <cefsfb@yahoogroups.com>
> Date: Monday, January 19, 2009, 4:57 PM
>
>
>
>
>
>
>
>
>
>
>
>
>
>
> Victor would like folks to share their stories with him for
> his doctoral thesis.  "Part of the reason I am
> conducting this research is for my own benefit in my
> continued quest to make sense out of my experience with CFS.
> I am currently an LMFT working with an UCSF agency. If you
> want/need anymore info. from me please feel free to ask.
> "
>
>  
>
> Please contact him directly, vsadae@yahoo. com .
>
>  
>
> Hey Victor, 
>
>  
>
> Welcome to the group.  Hope you get lots of people to help
> you.  Perhaps you can come to the in-person support group
> mtgs, and meet w/ people right after the mtg.  I'm
> pretty sure that the room for the SF mtg isn't being
> used afterwards.  Let me know, and I can send SF group
> members an email letting them know that you're coming.
>
>
> Let me know if I can do anything else.  And thanks for
> doing this!!
>
>
> Sharon
>
> > Date: Mon, 19 Jan 2009 08:53:30 -0800
> > From: vsadae@yahoo. com
> > Subject: Re: File - Subscription Request Questions
> > To: CEFSFB-owner@ yahoogroups. com
> >
> > Ok, here goes:
> >
> > 1) Victor Steffens
> > 2)38
> > 3) CFS; gluten intolerance
> > 4) I am the person
> > 5) male
> > 6) Alameda
> > 7) Caucasian
> > 8) straight
> > 9) full-time
> > 10)Is anyone interested in sharing their lived
> experience with the illness?
> > I am conducting a phenomenological study for my
> doctoral thesis in Clinical Psychology and am interested in
> knowing if I could advertise my study on the site.This is an
> opportunity for people to share their story with the
> illness.
> > 11) alchemy; college football
> > 12) Part of the reason I am conducting this research
> is for my own benefit in my continued quest to make sense
> out of my experience with CFS. I am currently an LMFT
> working with an UCSF agency. If you want/need anymore info.
> from me please feel free to ask.
> >
> > Thanks for your time.
> >
> > Sincerely,
> >
> > Victor Steffens
> >
> >
> > --- On Sun, 1/18/09, CEFSFB Moderator
> <CEFSFB-owner@ yahoogroups. com> wrote:
> >
> > > From: CEFSFB Moderator <CEFSFB-owner@
> yahoogroups. com>
> > > Subject: File - Subscription Request Questions
> > > To: vsadae@yahoo. com
> > > Date: Sunday, January 18, 2009, 5:14 PM
> > > Thanks for your interest in the group. I'd
> like to
> > > introduce you to the list and make sure that
> you're not
> > > a spammer. Please answer the following questions.
> The ones
> > > w/ stars are mandatory. All of your answers,
> except the
> > > first one, will be forwarded to the group. Feel
> free to use
> > > a pseudonym to protect your anonymity.
> > >
> > > *How did you come to learn about this group?
> > >
> > > *1) Name
> > > *2) Age
> > > *3) What medical conditions do you have, or think
> you may
> > > have?
> > > *4)Are you the friend or family of someone w/ one
> of these
> > > illnesses?
> > > *5) Male/female
> > > 6) Town or City you live in
> > > 7) Ethnicity
> > > 8) Sexual orientation/ Gender Identity (I ask
> this question
> > > bc/ many gay, lesbian, and transgendered people
> w/ these
> > > illnesses have expressed that they feel more
> comfortable in
> > > groups like this, if they know that there are
> others like
> > > them in it. I am a lesbian.)
> > > 9) Level of functionality - i.e. homebound -
> unable to cook
> > > or clean for self, able to get out a few days in
> a week,
> > > work part-time, work full-time
> > > 10) Questions you have for the group i.e.
> "does anyone
> > > have a good rheumatologists who knows how to
> treat FM,"
> > > "does anyone have a good Kaiser
> doctor,"
> > > "would anyone like a walking buddy,"
> "would
> > > anyone like a phone buddy"
> > > 11) Interests you have that have nothing to do w/
> your
> > > illness(es)
> > > 12) Anything else you want to say about yourself.
> > >
> > > We appreciate the interest of healthcare
> providers, but
> > > they are not allowed to join this list unless
> they have one
> > > of these illnesses and are joining for personal
> reasons.
> > > But we are glad to forward your info to the
> group. If you
> > > would like to make your services known to the
> people on the
> > > list, email your info to CEFSFB-owner@
> yahoogroups. com, and
> > > it will be forwarded to the group. You may do
> this once a
> > > year.
> > >
> > > Sharon
> > > Group list owner
> >
> >
> >
>
>
> Windows Live™ Hotmail®: Chat. Store. Share. Do more with
> mail.  Check it out.

#432

From: "D. G. Khattab & K. Siegel" <dgkks@...>
Date: Tue Jan 20, 2009 5:42 am
Subject: Re: Share You Story to Help Increase Understanding about CFIDS

debrasciafu

Offline

Does he want us to put stories here or to him directly? And what exactly does he want to know? I have filled out a lot of forms by this time and I know that there is quite a bit in my life that has either been influenced by or helped cause me to come down with chronic illnesses, so I'm not sure what he is interested in knowing about. I also have written extensively about my life and illnesses in poetry and essay form over the years.
Debra Grace Khattab

Debra Grace Khattab & Ken Siegel
Homeschooling Jeremy (17) & Vanyel (13) Siegel
http://mamasciaf.livejournal.com/
http://groups.yahoo.com/group/MGIFamilyClub/

Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme Commander of the Intergalactic Allied Forces, Horsehead Nebula bound

"I always wanted to be a writer, but Alan Moore's work and help inspired me to write comics. In some ways the biggest influence on me writing was Punk. There was the idea that you could do something by simply doing it." ~Neil Gaiman
"Metaphors have a way of holding the most truth in the least space." ~Orson Scott Card
"You must stay drunk on writing so reality cannot destroy you." ~Ray Bradbury
"Writing is easy: All you do is sit staring at a blank sheet of paper until drops of blood form on your forehead." ~Gene Fowler

--- On Mon, 1/19/09, Sharon P <hosnar@...> wrote:

From: Sharon P <hosnar@...>
Subject: [CEFSFB] Share You Story to Help Increase Understanding about CFIDS
To: "CEFSFB Yahoo" <cefsfb@yahoogroups.com>
Date: Monday, January 19, 2009, 4:57 PM

Victor would like folks to share their stories with him for his doctoral thesis. "Part of the reason I am conducting this research is for my own benefit in my continued quest to make sense out of my experience with CFS. I am currently an LMFT working with an UCSF agency. If you want/need anymore info. from me please feel free to ask. "

Please contact him directly, vsadae@yahoo. com .

Hey Victor,

Welcome to the group. Hope you get lots of people to help you. Perhaps you can come to the in-person support group mtgs, and meet w/ people right after the mtg. I'm pretty sure that the room for the SF mtg isn't being used afterwards. Let me know, and I can send SF group members an email letting them know that you're coming.

Let me know if I can do anything else. And thanks for doing this!!

Sharon

> Date: Mon, 19 Jan 2009 08:53:30 -0800
> From: vsadae@yahoo. com
> Subject: Re: File - Subscription Request Questions
> To: CEFSFB-owner@ yahoogroups. com
>
> Ok, here goes:
>
> 1) Victor Steffens
> 2)38
> 3) CFS; gluten intolerance
> 4) I am the person
> 5) male
> 6) Alameda
> 7) Caucasian
> 8) straight
> 9) full-time
> 10)Is anyone interested in sharing their lived experience with the illness?
> I am conducting a phenomenological study for my doctoral thesis in Clinical Psychology and am interested in knowing if I could advertise my study on the site.This is an opportunity for people to share their story with the illness.
> 11) alchemy; college football
> 12) Part of the reason I am conducting this research is for my own benefit in my continued quest to make sense out of my experience with CFS. I am currently an LMFT working with an UCSF agency. If you want/need anymore info. from me please feel free to ask.
>
> Thanks for your time.
>
> Sincerely,
>
> Victor Steffens
>
>
> --- On Sun, 1/18/09, CEFSFB Moderator <CEFSFB-owner@ yahoogroups. com> wrote:
>
> > From: CEFSFB Moderator <CEFSFB-owner@ yahoogroups. com>
> > Subject: File - Subscription Request Questions
> > To: vsadae@yahoo. com
> > Date: Sunday, January 18, 2009, 5:14 PM
> > Thanks for your interest in the group. I'd like to
> > introduce you to the list and make sure that you're not
> > a spammer. Please answer the following questions. The ones
> > w/ stars are mandatory. All of your answers, except the
> > first one, will be forwarded to the group. Feel free to use
> > a pseudonym to protect your anonymity.
> >
> > *How did you come to learn about this group?
> >
> > *1) Name
> > *2) Age
> > *3) What medical conditions do you have, or think you may
> > have?
> > *4)Are you the friend or family of someone w/ one of these
> > illnesses?
> > *5) Male/female
> > 6) Town or City you live in
> > 7) Ethnicity
> > 8) Sexual orientation/ Gender Identity (I ask this question
> > bc/ many gay, lesbian, and transgendered people w/ these
> > illnesses have expressed that they feel more comfortable in
> > groups like this, if they know that there are others like
> > them in it. I am a lesbian.)
> > 9) Level of functionality - i.e. homebound - unable to cook
> > or clean for self, able to get out a few days in a week,
> > work part-time, work full-time
> > 10) Questions you have for the group i.e. "does anyone
> > have a good rheumatologists who knows how to treat FM,"
> > "does anyone have a good Kaiser doctor,"
> > "would anyone like a walking buddy," "would
> > anyone like a phone buddy"
> > 11) Interests you have that have nothing to do w/ your
> > illness(es)
> > 12) Anything else you want to say about yourself.
> >
> > We appreciate the interest of healthcare providers, but
> > they are not allowed to join this list unless they have one
> > of these illnesses and are joining for personal reasons.
> > But we are glad to forward your info to the group. If you
> > would like to make your services known to the people on the
> > list, email your info to CEFSFB-owner@ yahoogroups. com, and
> > it will be forwarded to the group. You may do this once a
> > year.
> >
> > Sharon
> > Group list owner
>
>
>

Windows Live� Hotmail�: Chat. Store. Share. Do more with mail. Check it out.

#431

From: Sharon P <hosnar@...>
Date: Tue Jan 20, 2009 1:05 am
Subject: Grouply Inviter No Longer in this Group

hosnar

Offline

Just wanted folks to know that the guy who sent out the Grouply invites is no longer a member of this group. He did not respond to my request asking him whether he had CFIDS or FM, or was the friend or family of someone who was. Since that is a requirement of being on this list, he has been removed.

Sharon
group owner

Windows Live� Hotmail�: Chat. Store. Share. Do more with mail. Check it out.

#430

From: Sharon P <hosnar@...>
Date: Tue Jan 20, 2009 12:57 am
Subject: Share You Story to Help Increase Understanding about CFIDS

hosnar

Offline

Victor would like folks to share their stories with him for his doctoral thesis. "Part of the reason I am conducting this research is for my own benefit in my continued quest to make sense out of my experience with CFS. I am currently an LMFT working with an UCSF agency. If you want/need anymore info. from me please feel free to ask. "

Please contact him directly, vsadae@... .

Hey Victor,

Welcome to the group. Hope you get lots of people to help you. Perhaps you can come to the in-person support group mtgs, and meet w/ people right after the mtg. I'm pretty sure that the room for the SF mtg isn't being used afterwards. Let me know, and I can send SF group members an email letting them know that you're coming.

Let me know if I can do anything else. And thanks for doing this!!

Sharon

> Date: Mon, 19 Jan 2009 08:53:30 -0800
> From: vsadae@...
> Subject: Re: File - Subscription Request Questions
> To: CEFSFB-owner@yahoogroups.com
>
> Ok, here goes:
>
> 1) Victor Steffens
> 2)38
> 3) CFS; gluten intolerance
> 4) I am the person
> 5) male
> 6) Alameda
> 7) Caucasian
> 8) straight
> 9) full-time
> 10)Is anyone interested in sharing their lived experience with the illness?
> I am conducting a phenomenological study for my doctoral thesis in Clinical Psychology and am interested in knowing if I could advertise my study on the site.This is an opportunity for people to share their story with the illness.
> 11) alchemy; college football
> 12) Part of the reason I am conducting this research is for my own benefit in my continued quest to make sense out of my experience with CFS. I am currently an LMFT working with an UCSF agency. If you want/need anymore info. from me please feel free to ask.
>
> Thanks for your time.
>
> Sincerely,
>
> Victor Steffens
>
>
> --- On Sun, 1/18/09, CEFSFB Moderator <CEFSFB-owner@yahoogroups.com> wrote:
>
> > From: CEFSFB Moderator <CEFSFB-owner@yahoogroups.com>
> > Subject: File - Subscription Request Questions
> > To: vsadae@...
> > Date: Sunday, January 18, 2009, 5:14 PM
> > Thanks for your interest in the group. I'd like to
> > introduce you to the list and make sure that you're not
> > a spammer. Please answer the following questions. The ones
> > w/ stars are mandatory. All of your answers, except the
> > first one, will be forwarded to the group. Feel free to use
> > a pseudonym to protect your anonymity.
> >
> > *How did you come to learn about this group?
> >
> > *1) Name
> > *2) Age
> > *3) What medical conditions do you have, or think you may
> > have?
> > *4)Are you the friend or family of someone w/ one of these
> > illnesses?
> > *5) Male/female
> > 6) Town or City you live in
> > 7) Ethnicity
> > 8) Sexual orientation/Gender Identity (I ask this question
> > bc/ many gay, lesbian, and transgendered people w/ these
> > illnesses have expressed that they feel more comfortable in
> > groups like this, if they know that there are others like
> > them in it. I am a lesbian.)
> > 9) Level of functionality - i.e. homebound - unable to cook
> > or clean for self, able to get out a few days in a week,
> > work part-time, work full-time
> > 10) Questions you have for the group i.e. "does anyone
> > have a good rheumatologists who knows how to treat FM,"
> > "does anyone have a good Kaiser doctor,"
> > "would anyone like a walking buddy," "would
> > anyone like a phone buddy"
> > 11) Interests you have that have nothing to do w/ your
> > illness(es)
> > 12) Anything else you want to say about yourself.
> >
> > We appreciate the interest of healthcare providers, but
> > they are not allowed to join this list unless they have one
> > of these illnesses and are joining for personal reasons.
> > But we are glad to forward your info to the group. If you
> > would like to make your services known to the people on the
> > list, email your info to CEFSFB-owner@yahoogroups.com, and
> > it will be forwarded to the group. You may do this once a
> > year.
> >
> > Sharon
> > Group list owner
>
>
>

Windows Live� Hotmail�: Chat. Store. Share. Do more with mail. Check it out.

#429

From: "Melanie Phelps" <mrsmoggles@...>
Date: Mon Jan 19, 2009 9:43 am
Subject: Re: just checking in...

mrsmoggles1

Offline

I used to play pogo.com games and crosswords (when I have them). OMG
Kaiser friggin sucks...we got hit big time and i cannot afford my meds
any longer that are name brand, i.e., insulin, nuerontin. and
hubbies...well, it is me that will need to take most flack. he needs
his meds to stabilize his moods.

now, as mom told hubby, it rains when it pours, or some such
thing...he got bit by a rottweiler last night. He refuses to go to
hospital despite owner saying he is unsure of the shots dog has had
recently. can anyone say stress?? now son, after crashing my car, has
his dad wooing him to come back. i am supposed to be ok with it...if
he goes, he won't be allowed back...i cannot handle it. and as if it
was all going good, my left hand has something going on with it. every
time i stretch or hold something the pad under index finger
burns...the muscle in there.  can't go to doctor, besides all they
would say is yup i am sure you feel something but i don't see anything
so you must be good to go!!!

well, at least i can be thankful for what didn't happen...no dogs got
bit means no vet bills. son DID come home and if he leaves, it will be
ok back to no worries past my small world. mom and dad won't let me
live that down for a while...more stress, heart all broken and soul
crushed and i dunno what all else there is...wait, was talking
thankful!! got thru another day, made some bread that turned out
fairlly well, got my material cut for another quilt...what else? let
me dig deep. ummmm, ok oh yea, a nice nite outside.

i hope you are doing better. I wish I had some answers for you.
Sometimes we have to live day by day, hour by hour, minute by
minute...for my headaches i use ice on neck, cold water or ice chips,
excedrin migraine ( got generic and it works better than name brand,
go figure!), an eye cover for resting, and an ice pack with aromatic
herbs really helps...usually if i lay propped at 45-ish degree angle
and fall asleep with ice on back of neck and on forehead, i can
achieve a modicum of relief...mine can last up to 10 days. but there
was a lot of debate on whether i get cluster or migraines...go
figure!! i know something that soothes me and helps me to relax is
petting my cat or dog, which ever will sit next to me quietly!! oooo
and sometimes, light yoga poses or small stretching in bed ( so i
don't fall over since i get really off balance when headaches abound!!!)

take care, relax, deep breath and hang in there!!! ~ melanie

--- In CEFSFB@yahoogroups.com, "D. G. Khattab & K. Siegel" <dgkks@...>
wrote:
>
> I play games to keep myself distracted while I wait to recover from
severe fatigue (there are a lot of interesting games available online,
if anybody is interested, email me and I'll send you some links).� I'm
still wiped out, mostly from the stress of trying to rearrange stuff
in the house and deal with crises of varying kinds from vet visits to
trying to budget increased Kaiser costs into a tinier budget since my
partner made less last year due to the economy.� One thing that has
hit us the hardest is that Kaiser just increased non-generic drugs
with a $250 deductible per person per year so we had to pull out
teenage son off the drugs he was trying to use for his migraines and
put him on a generic drug because we just didn't have the money after
going broke paying for his dental surgery.� If anybody has any ideas
on what to do for migraines when combined with fibromyalgia, we'd be
interested as none of the drugs whether generic or not has done our
>  son much good.� We actually managed to get the house decorated even
if we ran late and have a few people over, so the holidays managed to
be fun, but I'm glad they are over and hope the New Year will be
better than last year.
> Debra Grace Khattab
>
> Debra Grace Khattab & Ken Siegel
>
> Homeschooling Jeremy (17) & Vanyel (13) Siegel
>
> http://mamasciaf.livejournal.com/
>
> http://groups.yahoo.com/group/MGIFamilyClub/
>
>
>
> Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme
Commander of the Intergalactic Allied Forces, Horsehead Nebula bound
>
>
>
> "I always wanted to be a writer, but Alan Moore's work and help
inspired me to write comics.  In some ways the biggest influence on me
writing was Punk.  There was the idea that you could do something by
simply doing it."  ~Neil Gaiman
>
> "Metaphors have a way of holding the most truth in the least space."
  ~Orson Scott Card
>
> "You must stay drunk on writing so reality cannot destroy you."
~Ray Bradbury
>
> "Writing is easy:  All you do is sit staring at a blank sheet of
paper until drops of blood form on your forehead."  ~Gene Fowler
>
> --- On Fri, 1/16/09, Melanie Phelps <mrsmoggles@...> wrote:
> From: Melanie Phelps <mrsmoggles@...>
> Subject: [CEFSFB] just checking in...
> To: CEFSFB@yahoogroups.com
> Date: Friday, January 16, 2009, 9:36 PM
>
>
>
>
>
>
>
>
>
>
>
>             Gawd, a week in Vermont seemed a lifetime ago!!! I
managed to not be
>
> too laid up, but at my detriment it seems. Last 3 of the 6 days travel
>
> and visit, I couldn't eat, couldn't take meds, lost my meter for
>
> glucose and stomach heaved everything out!! Got home and had some
>
> broth and some chicken salad sandwiches and started feeling better
>
> tummy wise. Now today, (we got home on wednesday)I have been sleeping
>
> till noon this morning and went for a nap and slept thru hubby waking
>
> me!! Right now I have my legs propped and my sugars are under 200
>
> again...(took insulin immediately after finding tester and seeing it
>
> was 460-something! !)
>
>
>
> Oh well...anyone have some home remedy they do to recoup a bit??
>
>
>
> thanks, melanie
>

#428

From: "D. G. Khattab & K. Siegel" <dgkks@...>
Date: Sat Jan 17, 2009 8:23 pm
Subject: Re: just checking in...

debrasciafu

Offline

I play games to keep myself distracted while I wait to recover from severe fatigue (there are a lot of interesting games available online, if anybody is interested, email me and I'll send you some links). I'm still wiped out, mostly from the stress of trying to rearrange stuff in the house and deal with crises of varying kinds from vet visits to trying to budget increased Kaiser costs into a tinier budget since my partner made less last year due to the economy. One thing that has hit us the hardest is that Kaiser just increased non-generic drugs with a $250 deductible per person per year so we had to pull out teenage son off the drugs he was trying to use for his migraines and put him on a generic drug because we just didn't have the money after going broke paying for his dental surgery. If anybody has any ideas on what to do for migraines when combined with fibromyalgia, we'd be interested as none of the drugs whether generic or not has done our son much good. We actually managed to get the house decorated even if we ran late and have a few people over, so the holidays managed to be fun, but I'm glad they are over and hope the New Year will be better than last year.
Debra Grace Khattab

Debra Grace Khattab & Ken Siegel
Homeschooling Jeremy (17) & Vanyel (13) Siegel
http://mamasciaf.livejournal.com/
http://groups.yahoo.com/group/MGIFamilyClub/

Ad Astra Ad Ultra SCIAF - Go to the stars and beyond Supreme Commander of the Intergalactic Allied Forces, Horsehead Nebula bound

"I always wanted to be a writer, but Alan Moore's work and help inspired me to write comics. In some ways the biggest influence on me writing was Punk. There was the idea that you could do something by simply doing it." ~Neil Gaiman
"Metaphors have a way of holding the most truth in the least space." ~Orson Scott Card
"You must stay drunk on writing so reality cannot destroy you." ~Ray Bradbury
"Writing is easy: All you do is sit staring at a blank sheet of paper until drops of blood form on your forehead." ~Gene Fowler

--- On Fri, 1/16/09, Melanie Phelps <mrsmoggles@...> wrote:

From: Melanie Phelps <mrsmoggles@...>
Subject: [CEFSFB] just checking in...
To: CEFSFB@yahoogroups.com
Date: Friday, January 16, 2009, 9:36 PM

Gawd, a week in Vermont seemed a lifetime ago!!! I managed to not be
too laid up, but at my detriment it seems. Last 3 of the 6 days travel
and visit, I couldn't eat, couldn't take meds, lost my meter for
glucose and stomach heaved everything out!! Got home and had some
broth and some chicken salad sandwiches and started feeling better
tummy wise. Now today, (we got home on wednesday)I have been sleeping
till noon this morning and went for a nap and slept thru hubby waking
me!! Right now I have my legs propped and my sugars are under 200
again...(took insulin immediately after finding tester and seeing it
was 460-something! !)

Oh well...anyone have some home remedy they do to recoup a bit??

thanks, melanie

#427

From: "Melanie Phelps" <mrsmoggles@...>
Date: Sat Jan 17, 2009 5:36 am
Subject: just checking in...

mrsmoggles1

Offline

Gawd, a week in Vermont seemed a lifetime ago!!! I managed to not be
too laid up, but at my detriment it seems. Last 3 of the 6 days travel
and visit, I couldn't eat, couldn't take meds, lost my meter for
glucose and stomach heaved everything out!! Got home and had some
broth and some chicken salad sandwiches and started feeling better
tummy wise. Now today, (we got home on wednesday)I have been sleeping
till noon this morning and went for a nap and slept thru hubby waking
me!! Right now I have my legs propped and my sugars are under 200
again...(took insulin immediately after finding tester and seeing it
was 460-something!!)

Oh well...anyone have some home remedy they do to recoup a bit??

thanks, melanie

#426

From: "Jim Remer" <jrqbear@...>
Date: Thu Jan 8, 2009 11:44 am
Subject: CFIDS/FM Group meets January 10

jrqbear

Offline

HELLO FABULOUS PEOPLE! - Saturday, JANUARY 10

***###_ WE MEET THE SECOND SATURDAY OF EVERY MONTH. _###***

The SF Fibromyalgia and CFIDS Self-Help and Advocacy Group meets
Saturday, January 10, 2-4 pm with Michael S. leading.

We continue with the following format: an hour for individual
sharing (4-6 minutes each) followed by an hour devoted to a specific
topic. This month we begin again the topics from "CFIDS Self-Help:
Materials for Alumni/On-going Groups" by Bruce Campbell. The topic for
January 10 is "MANAGING EMOTIONS".

This is a ***FRAGRANCE FREE*** meeting. And please DO NOT come to
the meeting if you are CONTAGIOUS.

The information we share at these meetings is **confidential**. By
attending this meeting, you agree to not share information about
members with those outside of the group. (Disclaimer: I cannot
guarantee that all members will abide by this rule.)

LOCATION
Davies Campus of the California Pacific Medical Center, at Castro
St. and Duboce St. Room B2-3. Enter the North Tower, take the
elevator to level B. It is near the cafeteria.

Parking in the garage is free. Take a ticket when you enter and
insert it into the slot when you leave. Sometimes you won't receive a
card when you enter. In either case, you won't be charged. Public
transportation: N, J, 22, 24, 6, 7, 66, 71. Wheelchair accessible.

Please make an effort to be on time to the meeting, as late arrivals
can be disruptive, especially to those who are sharing. It is better
to come to the meeting late, than not at all, but please make a
concerted effort to come on time.

FUTURE MEETINGS & TOPICS (2nd Saturday, 2:00-4:00):

FEBRUARY 14: IMPROVING RELATIONSHIPS
MARCH 14: TAMING STRESSFUL THOUGHTS
APRIL 11: MINIMIZING RELAPSES

To receive meeting notices, get on the group's email list by sending a
blank email to SFFSSG-subscribe@yahoogroups.com You will receive an
email with a link that you will need to click in order to confirm
your subscription. You can also get on the email list by going to
http://health.groups.yahoo.com/group/SFFSSG/. If you are planning
to go to meetings, I strongly suggest that you get on the email list
so that you can receive important notices. While meeting times and
location will probably be the same every month, they are subject to
change. If, and only if, you don't have email, call Cosi 415 564 2275
or Deborah 415 332 5279.

Please note that SFFSSG is an email newsletter, ***NOT*** an email
discussion group. This email list will only have administrative
messages to the group. If you're interested in an email discussion
group for the Bay Area, check out http://health.groups.yahoo.com/
group/CEFSFB .

Questions, comments, suggestions: Email jrqbear@... or if you
don't have email, call phone contacts. Please don't be offended if we
take a while to respond to email or not at all. We get A LOT of
inquiries and we do the best we can. Again, the email discussion group
is a great place to get info about the Bay Area.

Jim Remer
Assistant Moderator

Our SUPER FABULOUS team of volunteers: Michael - Moderator, Cathy -
publicity, Cosi - phone contact, Deborah - phone contact and
healthcare provider info, Jim - contact list/healthcare provider info,
Sharon - everything as needed.

***--From CFIDS Self-Help: Materials for Alumni/On-going Groups by
Bruce Campbell. Campbell also offers a free on-line course, and
sometimes an in-person course. Phone:650/856-2109.
Email:CFIDS_Self_Help@ Website: www.cfidsselfhelp.org.

#425

From: "Melanie Phelps" <mrsmoggles@...>
Date: Thu Jan 1, 2009 9:36 am
Subject: Re: Invitations to Join Grouply

mrsmoggles1

Offline

Ummm, well, if it was an alien abduction group I think they would be
just a vulnerable!! But, I had to say this happened in a learn
quilting group. I clicked the link...then got a virus sending out
emails to all on my list, then my MSN messenger. then my skype...My
hubby wiped it each time (I lost tons) . This last time my hubby
d-banned it...something homeland security does (other than that I
heard blah blah blah it is fixed this time!) So yea I think of it as a
virus!! anyway, just my 2 cents!!

Happy New Year!! ~ melanie

--- In CEFSFB@yahoogroups.com, Deborah Temple <deborahtemple@...> wrote:
>
> Good point, Michael. How do we do that? Deborah T.
>
> --- On Tue, 12/30/08, MSA <msallen1984@...> wrote:
>
> From: MSA <msallen1984@...>
> Subject: [CEFSFB] Re: Invitations to Join Grouply
> To: CEFSFB@yahoogroups.com
> Date: Tuesday, December 30, 2008, 8:32 PM
>
>
>
>
>
>
>
>
>
>
> I� just remembered that I received another invite to join Grouply
last summer. Another name, based on our 'common interests' via another
CFS Yahoo Group. I was tired and half tempted, then stopped myself as
I was too damn tired to think of joining a new group and knew I'd have
to do some cursory research on that group, etc. So I don't know if it
would have led to porn sites or whatever.
>
> I'm thinking now that maybe this should be brought to the attention
of Yahoo, i.e., that our various patient groups are being used for a
possible internet scam. It does feel like a personal violation as
we're an illness-based group and we have enough problems. If we were
an alien abduction group, I wouldn't be as concerned :-)
>
> michael
>

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#424

From: Deborah Temple <deborahtemple@...>
Date: Tue Dec 30, 2008 10:26 pm
Subject: Re: Re: Invitations to Join Grouply

deborahtemple

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Good point, Michael. How do we do that? Deborah T.

--- On Tue, 12/30/08, MSA <msallen1984@...> wrote:

From: MSA <msallen1984@...>
Subject: [CEFSFB] Re: Invitations to Join Grouply
To: CEFSFB@yahoogroups.com
Date: Tuesday, December 30, 2008, 8:32 PM

I just remembered that I received another invite to join Grouply last summer. Another name, based on our 'common interests' via another CFS Yahoo Group. I was tired and half tempted, then stopped myself as I was too damn tired to think of joining a new group and knew I'd have to do some cursory research on that group, etc. So I don't know if it would have led to porn sites or whatever.

I'm thinking now that maybe this should be brought to the attention of Yahoo, i.e., that our various patient groups are being used for a possible internet scam. It does feel like a personal violation as we're an illness-based group and we have enough problems. If we were an alien abduction group, I wouldn't be as concerned :-)

michael

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#423

From: fran jerzgarzewski <franj12000@...>
Date: Tue Dec 30, 2008 8:50 pm
Subject: Re: Re: Invitations to Join Grouply

franj12000

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