Support Groups

[chocket]

Sonoma County Morgellons Support Group

Interested in supporting the Morgellons Research Foundation locally?

I have recently been accepted into the Kaiser/CDC Research, and have formed Sonoma County Morgellons Support Group.

The mission of the group will be to support the Morgellon's Research Foundation in Sonoma County. To provide education to the public, search for contributions and donations for funding research and offer support information for Morgellon sufferers.We have been hiding behind the computer screen too long. I am a teacher, and have had the disease for 4 years. No one in my family nor my students have ever contracted the disease, primarily due to being proactive in hygiene procedures. We need to support each other and MFR in getting this disease resolved. I am spreading this information through various means including local newspapers and internet groups.So Stop being a victim, become active and lets come together. Numbers make a difference!

Please sign in to the guesbook. I would like to accumulate a database of those living in Sonoma, Napa, Marin, Mendocino areas.

carrieschoices.com/Morgellons

or

Sonoma_County_Morgellons_Support_Group in yahoo groups. Thanks!

[jonsi]

Hi chocket,

I don't want to let this thread slip away to the archives.

I have wanted to start a support group. Can you please share what you all talk about in these meetings. Is it open to all? Did you advertise in a local newspaper, etc.

Thank you,
~jonsi

[chocket]

Hi, there is also a thread on Update Kaiser/CDC I have going as well. I'm still looking for more people to respond who live in the Sonoma/Mendocino/Napa area that would like to introduce themselves. Thanks jonsi for replying Carrie

[Seasprite]

Good luck with this!

[jonsi]

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

[jonsi]

Jo sent me a pm with great info/slate to start with for getting info out in our local newspapers.

We (I?) still need help with what would be discussed during a support group meeting.
Itwl.
~jonsi

[chocket]

Hi all,
Thanks to Joni, for all the helpful info. This is all new to me, so any advice would be helpful and welcome. This is great that people are showing interest, its a wonderful start. Im running late to work, so I'll post more later.
Carrie

[jonsi]

Hi chocket carrie,

This is new to me too! I'm so glad Franky made this a "sticky" subject because it makes it easier for everyone to get involved.

This is what Jo and I have put together so far (most of it Jo did for a web-site, I modified it for the newspaper. Jo went more into depth on involving the medical field and health care professionals. Hope it's ok Jo that I put this out now.)

Support Group for Morgellons, a term used by many in countries around the world to describe a medical condition that has common symptoms:

These symptoms may include itchy skin with crawling, biting sensations, white granules from skin and hair follicles, chronic fatigue, arthritis/pain in joints, depression, sores/lesions that won't heal and sometimes strange fibers or fibrous material coming from skin.

If you have been to a doctor and he says nothing is wrong with you, we may have answers and caring support for what you are going through. We are going through this also.

For more information please contact (phone # and name, e-mail, web page if available)

Anyone's ideas or additions to our brain storm, please help. Once we get the word out there we need an agenda for the meetings.

Itwl,
jonsi

[Cindy Casey]

Hi Chocket,

I am thankful for all you are doing in starting support groups. Thank you to Jonsi too and anyone else involved in this. There are are hundreds of patients in the Bay Area. I will be seeing patients in SF next week and would like to advertise this support group. I am already thinking of several in SF, Marin, Sonoma and surrounding counties who might benefit from a support group. Please let me know exactly how you want it advertised. I will pass out cards with website addy, put up a display, or whatever you want me to do. Will be happy to work with you on this.

Cindy

[hilly]

Cindy.... I know this does'nt apply to me, but it's lovely to see you on here... really lovely.

Milly x