Hi again!
I'm in northern New Mexico so I won't be able to attend your meetings! Although, I would love to visit California again for a vacation.
My question is what do you all talk about during the support groups? I don't want people to come to a group meeting with high hopes and leave in desperation. (I thought I had addressed this in my last post here but it isn't there...)
I know of plenty of people who suffer from Morgellons. I have had group meetings with Clifford Carnicom. I hear stories from acquaintances of how a family member is suffering from depression, hair loss, huge bloody lesions where the scab has to picked off to find relief, fatigue, suicidal thoughts, diarreah, and the list goes on.
How do we reach those people who suffer yet have no idea what is going on? What do we say to those who do know what is going on? Saying "tune-in next week, maybe we will know something then" really does not help.
A support group needs to:
(1) address morgellons and validate for the sufferer that this is not DOP
(2) set up a buddy system so that a caring and understanding person is only a
phone call away.
(3) have a list of treatment tips that is easily understood and readily available in
the region (not a long grocery list)
(4) provide the public with information in simple, easy to understand explanation of
what Morgellons is (
ha ha ha, lol)
(5) care packages, simple ones
(epsom salt...some one mentioned that they were
handing out care packages in Santa Cruz, CA, help me find that person/post,
please?)
(6)
(7)
I need help with this. HELP! This doesn't have to be or should be specific to a foundation or region. We don't have to wait for info and help to trickle down. This can be a grass-root effort.
Lets get moving. Let's brain storm! No one is getting rich here keeping ideas to ourselves! Let's share and get this up and running.
I was a volunteer for the American Red Cross teaching HIV awareness in the 1980's. Can we get the red cross involved?
LIGHT BULB MOMENT here...uh huh. I have a BA in business administration (marketing / economics).
I know each of you have something you can share to make this a reality!
In the white light,
~joni