re copy of post on fm/chitchat board

Discussion in 'Spirituality/Worship' started by mamafurr, Jul 17, 2003.

  1. mamafurr

    mamafurr New Member

    this is a copy of email sent to sandy/hiriskrn

    i also intend for our walk/whatever to televised on the new/locally nationally.

    hi sandy, this is alice "mamafurr" from the fm board. i thought i would write you first before posting and let you know what would like to accomplish.

    i live in grass valley, ca, which is 1 hr out of sacramento and 1 1/2 hrs from reno, nv. so i contacted the "american chronic pain assn" which happens to be a non-profit world wide org that also happens to have its main ofc in rocklin, about 30 mis from me.

    my idea is to have a "walk" - probably not very far for some like me :), or some type of thing like "race for the cure" for cancer for fm and maybe cfs but don't know for sure if they go hand in hand. i think i probably have both, but know i have fm for sure and was diagnosed in 1990..

    so i don't know how to proceed. i spoke to monica, the assistant to the founder , penny, and she gave me alot of valuable info, and she is having penny call me back. monica suggested that i become a "facilitator" i guess for a support group.

    originally i thought i would put an ad in the 3 local/sacramento area papers, to have fm people contact me. but thought better not do that yet. baby steps
    we used to have a fibromyalgia support group up here that met locally in the hosp but it is not in the paper any more. i am to call another person that ran the local group that they hadn't heard from for awhile, but thought i would drop you a quick note first while my brain is functioning. after 2pm things get fuzzy :).

    i will post a copy of this on the board. everyone has great ideas but i think we need to start locally. i am thinking of making a flyer with my name and phone# or email and putting it in all the local drs offices, (orthos, gps, rhuemys) any others? with what we are trying to accomplish, i could get a feel for how many people are in my area w/this dd.

    i am thinking a target date will be next may, on fm awareness day. there is alot to do and organize so that gives me some time. also september is "pain awareness month".

    the acpa has free tool kits they will mail out to anyone in the nurse's assn.


  2. stilhere

    stilhere New Member

    you know I'd be willing to participate with ya, I don't have fm but hear lupus and fm go hand in hand. I live about 3 hours away from you maybe 4, but I have a relative that lives in Sacramento....just saying its possible for me...and it would be good for me to 'get away' from it all, even for a bit.....

    In Christ