Home › Forums › Open Discussion › Informal Support group for FMS, CFS and …. starting thursday
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June 9, 2009 at 1:05 am #591168
JoBParticipantI spoke with Richard at the Cafe Rosella in White Center today and he has agreed that we can meet at the Cafe Rosella on thursdays from 2 to 4 PM.
This will be an informal drop in group open to anyone with fibromyalgia or chronic fatigue syndrome or anyone dealing with similar illness issues..
if you have questions, please feel free to PM me… or just come by. i will be there.
June 9, 2009 at 3:15 pm #669295
JoBParticipantbump… my intention is to be at Cafe Rozella every thursday at 2 PM… we will see how that works:)
June 10, 2009 at 3:55 am #669296
JoBParticipantbump..
June 10, 2009 at 6:30 am #669297
HMC RichParticipantThe wife would like to go but that is in the middle of the toddler nap. We will tell our neighbor who has FM about it.
June 10, 2009 at 12:10 pm #669298
KatherineLParticipantJoB, I’ve never met you. Can you tell me how to recognize you? Thanks.
June 10, 2009 at 6:17 pm #669299
JoBParticipantLOL.. i didn’t think of that:)
I will be the somewhat aging woman of traditional build (i love that phrase) in comfortable clothes and very comfortable shoes with almost chin length hair that is transitioning from strawberry blond to grey… with HMC Rich’s wife’s FMS book…
whether i will be reading or not will depend on who shows up to talk with me:)
June 10, 2009 at 9:03 pm #669300
KatherineLParticipantI’ll make it if I can. Right now I’m waiting for the washer repairman, who was supposed to be here this morning. If he doesn’t get here this afternoon, I won’t have clean clothes to wear. Look for another somewhat aging woman of traditional build in comfortable shoes. Very short dark brown hair transitioning to silver. (I refuse to get grey.)
June 10, 2009 at 9:44 pm #669301
JoBParticipanti like to say i am turning platinum:)
and i don’t care if you are in clean clothes or not…
June 11, 2009 at 1:01 am #669302
JoBParticipanti’ve posted this before.. but for those of us with organizationally challenged brains… a repost in this thread is probably a good idea…
you can contact me at joanne@brayden.org.
let me know if you are interested in a group but can’t make this meeting time and space…
i am flexible… at least in scheduling:)
June 11, 2009 at 6:50 am #669303
HMC RichParticipantI spoke to Mari who wrote the book with Helen. I know she would like to be there but might not be able to. She also said that she and Helen would love to show up together one day so that they could add even more to the discussion.
I will try to get them to contact you and try to coordinate schedules.
June 11, 2009 at 5:48 pm #669304
JoBParticipanti will be at cafe Rosella today from 2 to 4 PM..
Cafe Rosella is in White Center.. a block and a half off Roxbury at 16th behind the triangle tavern.. next door to the tool rental place.
i will be reading or talking depending on who shows up.
feel free to just drop by any time during that time period… though i will probably have to leave at 4 if i want to drive myself home:)
June 12, 2009 at 12:06 am #669305
JoBParticipantHMCRich…
good thing or bad thing.. i didn’t get very far into that book today.. but i did recommend it to one of the women who came by.
*****
Since i didn’t get much reading done.. i am declaring today a success (Ricardo who owns Cafe Rosella agreed with me) so we will be there next week.. same time same place…
we are open to modifying the time to make it work better for those who really want to drop by… let me know… joanne@brayden.org
June 16, 2009 at 4:59 pm #669306
JoBParticipanti will be at the cafe Rosella again this thursday from 2 to 4 PM…
any dealing with pain and fatigue issues or related symptoms … whether you are diagnosed with FM or CFS or not … is welcome to join us…
June 17, 2009 at 12:08 am #669307
JanSParticipantbump
June 18, 2009 at 6:59 pm #669308
JoBParticipantToday is the day:) from 2 to 4 PM.. at Cafe Rsoella in White Center…
and yes, i will be there if i can just get off the computer,dressed and out the door:)
This week, i received info about a minimally invasive study being conducted locally for FM..
http://clinicaltrials.gov/ct2/show/NCT00524420
it is definately worth checking out.. one of the local participants was going to try to make it to our meeting today…
in the tab at the top of the page you will find a link to other related trials.. some current.. that you might find helpful.
Someone else asked that i post the name of the FM/CFS book i am reading.
It is: Alternative Treatments for Fibromyalgia & Chronic Fatigue Syndrome … by two local authors.. Mari Skelly and Helen Walker.
Mari has FM. Helen has RA.
The first edition of this book published in 1999 was a good book and i found myself recommending it often.
I am still in the opening chapters.. but the 2nd edition published in 2007 is a much better book than the first… with a very clear and readable rendition of the current understanding of these illnesses…
I can’t recommend it enough to anyone struggling with these illnesses or to anyone who lives with someone with FM or CFS… diagnosed or not.
I will be at Cafe Rosella at 2.. in a long jean skirt and a green blouse… and if alone.. i will probably be reading that book:)
feel free to drop in even if need to come late or leave early…
joanne
June 19, 2009 at 3:42 am #669309
AlcinaParticipantI have had FM for many years and am participating in the study at Harborview that JoB posted the link to. I am experiencing improvement in my symptoms, both pain and fatigue. There are, of course, no guarantees that everyone will. I’ll be happy to answer questions about it.
The researchers are looking for additional participants for this study.
June 24, 2009 at 9:52 am #669310
JoBParticipantThursday is coming:) and i will be at Cafe Rosella from 2 to 4 PM.
you don’t need to email me if you are interested.. you can just show up… I have had two very interesting conversations so far with two entirely different groups of women…
since each meeting creates itself according to the needs of those present.. you don’t need to feel like missing any of the other meetings will prevent you from getting value if you show up.
you can email me at joanne@brayden.org if you have questions…
June 25, 2009 at 12:57 am #669311
JoBParticipantis the bouncing barometer playing havoc with anyone else’s well being?
when i feel the worst is when it’s most helpful to talk with other people … i’ll be at Cafe Rosella in White Center tomorrow at 2.
June 25, 2009 at 10:33 am #669312
JanSParticipant…..b-b-b-b-bump…
June 25, 2009 at 4:33 pm #669313
JoBParticipanti will be at Cafe Rosella today (thursday) from 2 to 4 PM…
unless the weather changes drastically.. i will be the somewhat older lady with hair that is rapidly becoming more platinum than strawberry blonde.. in a long jean skirt and goldish light sweater… and flip flops… either reading a book on fibromyalgia and chronic fatigue syndrome or chatting away with the book on the table:))
June 26, 2009 at 1:28 am #669314
JoBParticipant -
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