I CAN'T BELIEVE MY HUSBAND........

Discussion in 'Fibromyalgia Main Forum' started by COOKIEMONSTER, May 7, 2003.

  1. COOKIEMONSTER

    COOKIEMONSTER New Member

    NOW THAT I HAVE YOUR ATTENTION.... :)

    Great news! I just found out through the newspaper LA Times, that there is a Fibromyalgia walk-a-thon, which is less than a mile, scheduled for this Saturday, MAY 10, 2003, organized by the National Fibromyalgia Association!

    The address is : 21820 Califa St., Woodland Hills, CA, just south of the Marriott Hotel.

    Registration begins at 9:00am and the walk-a-thon will start at 10:00am and end at 1:00pm. If you would like to attend, you will have to log into the website WWW.FMAWARE.ORG and register by e-mail. Register under the Many faces of Fibro.

    The cost will be: $15.00 adults, $7.00 for children. This activity includes for the cost: Bagels, fruit, sandwiches, Jamba Juice and T-shirts that read, "Many faces of Fibro." Those of us that have been diagnosed with Fibro, will receive yellow t-shirts while those who are there for support will wear white. For the children, there will be some arts and crafts, possible puppet show and there will also be raffles for a small fee.

    Apparently, Lynn Maatallana, I believe is the President of National Fibromyalgia Association, will be going to Washington to testify in front of congress to ask for money for research in a couple of weeks. Lynn will also be going to Sacramento to "march" for the approval of a Fibromyalgia Awareness Day.

    In two weeks, there will also be an article written about Fibro in the Newsweek magazine so please keep an eye out for it.

    This is so exciting that I had to share this with you!

    OH SO MUCH INFORMATION!

    Any comments?

    Ohhhhhhh, I hope I didn't break any rules....I just thought since we and mainly Jelly have been working her/our buns off, it's just nice to hear that there is someone else pushing for us to be heard.

    Cookiemonster
    [This Message was Removed on 05/07/2003, by COOKIEMONSTER]

    [This Message was Edited on 05/07/2003]

    [This Message was Edited on 05/07/2003]


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    lifedancer
    (375)

    This is Exciting News !!! 05/06/03 09:13 PM

    Hey,
    This seems a very appropriate post because we'll have to discuss how we're going to manage feet and knees and legs to walk that far (those who choose to do so) and then how we'll manage to recover afterward!

    I'd love to do this and meet some of you all. Where is Woodland Hills? And is it near where the Amtrak goes? I think we ought to start a list of all the people who'd like to go, either to walk or to cheer, and we can meet other folks to get connected with Congressional testimonies. It would be good for Lynn to carry our Bios with her. Or get addresses to send them to each of the Committee members. I think it's great that there are going to be hearings . . wonder who else will be involved, can we ask for them to be carried on C-Span? Any folks from our board who could participate? Or is this a written testimony?
    Well, regardless, I think we ought to consider what we'd like from Congress. Just putting money into research isn't enough. Besides, who gets the research money? and for what? There are urgent issues that need to be addressed by Congress: especially those having to do with recognizing this disability and providing for support so that those with it can survive and get medical care. Also so that we have inclusive laws to support and protect and recognize those with this dd.
    Let me put it another way. This disorder/disability is very different from an acute disease like, say, breast cancer. You want sharp research for that in order to get rid of the few cancer cells so that the many normal cells will stay that way and so a woman won't die. If you can do that, then she's back to her old self in a reasonable amount of time. But our DD is much more diffusive and chronic. It affects all body systems, the brain, the blood, everything.

    So, Cookie Monster are you going to walk and get a yellow t shirt? Who else?

    love,
    lifedancer

    [This Message was Edited on 05/06/2003]


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    COOKIEMONSTER
    (110)


    [ edit | delete ] LIFEDANCER AND OTHERS........ 05/07/03 07:43 AM

    I know that there are a lot of people that live in the surrounding valley's of the Los Angeles County, and I think that this would be the perfect time for all of us, as you said Lifedancer, to get together and make this a big thing.

    Helen, who by the way, if anyone is interested in speaking to her, I have her home phone number.....is coordinating this event, plans on having at least 300 people walk.....so get there early.......but it would be nice to have an even greater turnout with everyone's participation on this board that live in the surrounding areas.

    I mean, I read about this in the newspaper and I don't personally know these people that are coordinating this event, but then again, I only know you via keyboard and consider you part of my family. I do however know, that we share the same type of illness and frustrations and I really believe that it's time to step up to the plate and prove to the world that we exist! It's okay for us to come to this room and share our ideas and vent our frustrations, but if we don't participate in this event, we might as well stop smelling the roses.

    We are the ones that are dealing with this DD, so now lets get the ball rolling since someone else has done all the dirty work of coordinating this event and is trying to get US some attention! Who knows......maybe if there is a great turnout........just maybe......we can have some news coverage next year! Think about it people.....our future depends on how many people show up to support this cause.

    I'm not asking that you personally walk the mile because I personally cannot even walk for 10 minutes. But we do have family members that can walk for us and show their support. I for one, will not be walking, but my children will walk for me.

    Mind you all, this event is in the beginning stages (small group), since so little people know of this DD, but hey, it is my understanding that this is how the walk-a-thon for Breast Cancer got started.....

    I mean, if Lifedancer is willing to take the train in from San Diego.....what's your excuse?

    Yes, Lifedancer...the Amtrack train does come into Van Nuys, Ca....but I'll have to find out more information if you plan on coming down. I could even pick you up at the train station and we could go down there together. Just let me know.

    So what do you say people.....are we on the same page? WHAT ARE WE WAITING FOR? LET'S DO IT!

    Hoping for some responses.
    Cookiemonster


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    anng
    (72)

    This is so cool! 05/07/03 08:09 AM

    What exciting news! I am up in Washington and my husband graduates that day but I would love to do it next year! I'll bet if we plan for it we could get lots of people from this board and have our own "family reunion". While you're there do you mind asking if they are doing it next year? I am jealous! I want to be there with you!

    Love, Ann


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    kar1953
    (197)

    This is wonderful news!!! 05/07/03 08:26 AM

    Too bad I live in Ohio. If I had the $$ I'd fly out & walk with you. That in itself would be a small victory!

    Good luck & I'll be thinking of those of you who walk

    Take care........Kathi


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    COOKIEMONSTER
    (110)


    [ edit | delete ] BUMPING.. 05/07/03 08:45 AM

    Just a bumping........


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    tiredTina
    (50)

    I wouldn't miss this! 05/07/03 08:45 AM

    I live about 20 mins. away(by fwy), so there's not much that would stop me. I'll be there unless my son is sick. He almost died on March 18th, and had emergency surgery that saved his 1 year old life. If he's up for it, being outside and in a stroller.....we'll be there!!! My 3 1/2 yr. old girl would have a blast, and it's all for the support of helping mommy get better! It's a win, win situation!! I would love to meet you guys in person.......we should plan a meeting place. I'm not completely familiar with that area, is there anyone who is?
    ~Tina~


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    COOKIEMONSTER
    (110)


    [ edit | delete ] Tina......... 05/07/03 08:50 AM

    I'm not familiar with the location either, but I know that it is at a park of some sort. I live about 25 minutes away, so it won't be so hard to find. You may try to use mapquest.com to get directions.

    Maybe we can wear a certain color ribbon of some sort so we can find ourselves the day of the event.

    Also, please remember to register on-line at WWW.FMAWARE.ORG prior to Saturday, so you can be counted in.




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    tiredTina
    (50)

    Cookimonster 05/07/03 09:03 AM

    I just looked it up and it's Warner Ranch Park. I'll look into it some more and see if there's maybe a play area or picnic table area that may be a back up incase there are a ton of ribbons. If you come up with anything else first, let me know!
    ~Tina~


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    COOKIEMONSTER
    (110)


    [ edit | delete ] BUMPING........ 05/07/03 10:02 AM

    Please don't let this go by.


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    tiredTina
    (50)

    I double checked.... 05/07/03 11:42 AM

    and it's not Warner Ranch Park, it's WARNER PARK. I didn't want anyone to get lost on my account!!!!
    ~Tina~


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    COOKIEMONSTER
    (110)


    [ edit | delete ] DO THE BUMP'O 05/07/03 12:40 PM

    DO. DO. DO. DO DO. DO,



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    lifedancer
    (375)

    Cookie Monster . . . . 05/07/03 12:54 PM


    this is exciting . . . thanks for keeping the post before everyone . . . i have an idea . . .why don't you go back and change or add to the title so that folks in this area will know it's here and this weekend and we're getting together for it . . . . now, how you do that in 5 words or less is beyond me . . . . but i think we need to jazz it up to get more folks to read the post and get involved . . . .

    i don't have anyone to walk for me . . . . it would be nice to walk part of it and then have someone else finish, or better yet, they could walk the first part and we could walk over the finish line! i would like that yellow t shirt!!
    On the other hand, I may be wiped out just riding up on the train and being part of all the excitement, so will have to just "wing it"!

    My daughter has ridden several years in the AIDS bicycle ride from San Francisco to L.A. I would be in San Fran for the start and then meet her along the way . . . it was such a great experience, so moving and inspiring . . . . they would have vans that would go along with them each day and pick up people when they'd done all they could do, so everyone could do something, and the real athletes could go the whole way . . .

    Yes, that would be great if you could pick me up at the train station . . . . let's see if anyone else wants to come from down this way, san diego or orange county . . . would be great if we could all ride the train up, pick up folks along the way . . . . Hope Jelly will read this. It would be good if she could come up and bring the bio letters to present to go to Congress with Lynn. i know there's not much time, but if we had to think about it very much, we probably wouldn't do it, so maybe this is best . . . .

    thanks for all you're doing!
    lifedancer


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    COOKIEMONSTER
    (110)


    [ edit | delete ] Lifedancer..... 05/07/03 01:18 PM

    If you need help in trying to get on the right train, let me know. Otherwise, keep me posted as to the time of arrival and what station. It is my understanding that there is one here in Van Nuys which is about 15 minutes away from me.


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    COOKIEMONSTER
    (110)


    [ edit | delete ] BUMP 05/07/03 01:21 PM

    HE HEHEHEH



    [This Message was Edited on 05/08/2003]
  2. COOKIEMONSTER

    COOKIEMONSTER New Member

    I accidently deleted my posting so I had to copy and paste it instead of typing it all over. Lifedancer, I hope you can read my response to you.

    So Sorry.
  3. tiredTina

    tiredTina New Member

    Come on people!! Let us know you're interested!!!
    ~Tina~
  4. COOKIEMONSTER

    COOKIEMONSTER New Member

  5. COOKIEMONSTER

    COOKIEMONSTER New Member

    TOP OF THE MORNING TO YOU ALL!
  6. PrincessofYoga

    PrincessofYoga New Member

    Since I cant be there, but wish I could since I was raised and miss CA very badly!, please walk proud for us. I am fortunate however to be a part of the Arthritis Foundation Walk for Arthritis on Saturday and representing us. I have not told most people at work but they will find out when I have a blue hat on that i have it. We have a team set up so it should be a good awareness day.

    Thanks!!!
    Namaste
    LIsa
  7. COOKIEMONSTER

    COOKIEMONSTER New Member

    bumpity bump.........
  8. DragonBall

    DragonBall New Member

    i hope everyone has a great day. the problem is we dont have anything like this in uk.most people i mention fm to have never even heard of it!.oh well i will walk a little bit further on may 12th lol deb
  9. COOKIEMONSTER

    COOKIEMONSTER New Member

    Van Nuys, Ca is basically in or around the San Fernando Valley. Orange County is a good, I'd say, 1 to 1 1/2 hours away from me. I also understand that there is a train station in Sylmar, CA You may want to ask about that as well.

    I'm not sure what time the train runs, but find out what time the train leaves San Diego and the arrival time to either, Van Nuys, or Sylmar Ca.

    Either way, the party does not start (registration), until 9:00am for registration and the real party starts at 10:00am.
  10. COOKIEMONSTER

    COOKIEMONSTER New Member

  11. COOKIEMONSTER

    COOKIEMONSTER New Member

  12. loopyloo

    loopyloo New Member

    I live in the UK but if i lived in USA i would be walking with you may be i can were a yellow t shirt on that day i will be there in mind but not body all take care and don't push past pain and make your selves ill but good luck and i am looking forward to hearing from you all keep us posted to how it all went.

    best of luck Loopyloo xx