7-9 pm 6401 Freedom Blvd Aptos, Santa Cruz County, CA
Take the Freedom exit*)!!!!!!!!!!
Posted by pmerv (Member # 1504) on :
This doesn't need a response but it's a great group. I went once (4-5 hours away). They were very nice to me.
Posted by Annpa (Member # 11712) on :
I'm very interested in getting a group started in the central PA area. There is a group in Lewisburg, an hour away - evenings 7pm. Not realistic for me.
Any advice on the logistics of start up etc.
Very much appreciate your help, Annpa
Posted by CaliforniaLyme (Member # 7136) on :
Yes- just do it*)!)! We've had various waves of groupdom, times where we were really together and had topics every time and speakers etc- times when has just been a roundtable diuscussion for years at a time- times where we had snacks- I miss those- we ought to start that again- and times lately the last few years where we've had none- but a potluck- that was nice!!
I trained as a counselor so I got trained in how to do groups but I try to be as unofficial as possible and to shut up as much as I possibly can- there is nothing worse than a group with a pushy moderator!!! and most groups are run by untrained people- as long as you work from your heart you will do fine*)!*)!
important to stop non-stop talkers from nonstop talking but there usually isn't more than one of those and they are usually a great asset to the group if made aware of time matters-
you can use an egg timer and set time limits if you need to!!
I try and go all around- good for group therapy to do it that way because then even people who say they don't want to talk but really do, the shy ones, get a chance to do so without having to be assertive- not everyone CAN be assertive and at least it gives them a chance
the way we currently do ours
go all around say names
then new people go and intro themselves and tell their story if they want- and ask questions- and AFTER all NEW people have gone then oldsters get to go around in circle and share-
then at times we have topical meetings, shows, lectures, need to do more of that again, been very disorganized since last baby...
ANYWAY just set it up and THEY WILL COME!!!
All you need is one other Lymie and a coffeepot!! Actually you don't even need a coffeepot, I was htinking the phrase for AA*)! With Lyme you just need another Lymie*)!*)!
Local LIBRARIES usually have a very cheap rentable room!!! That is where ours started!
OH- it is important to try and keep politics AND religion out of the room- people who are republicans, democrats, libertarians, Muslims, Christians, Buddhists, Jewish people, EVERYONE gets bitten by ticks- important to set a standard for no off-topic politcial, religious talk, no homophobia tolerated, etc so everyone feels welcome. In general I have found Lymies to be especially open-minded and supportive of differences- maybe we self-select in being open to Lyme in teh first place- but one person can bring down a support group if you allow hate talk or actions to flourish-
the only time I had to deal with that was this one guy who began to rant about killing Kaiser employed physicians (and really seemed to be thinking about doing it!!!) With that- I have to say- we were all very shocked- and I hate to say it but honestly- sympathetic!!!- but we also had to let him know that it was not okay to think or do those things- no matter how much we may have understood his anger-
and HE needed to hear that he had crossed boundaries-!! because he was naming names and had a plan- the Tara Soff (sp, I forget-) rule does apply-
i let people come to group who have services or things for sale- the group can decide for themselves- they are all smart people-
only thing I do what is controlling- very controlling- if there is a newbie I make sure to stress abx to them- consider it my responsibility- but many group members try alternative stuff- and it is MY thing, that *I* need to work on, to be more openminded toward THOSE enterprises- and to support them best I can- with that said, to also honor the honesty of what I see works-!!!
I got A LOT of people MAD at me when I was VERY unprofessional a bunch of years back- maybe 5 years- someone in the group asked if they could arrange a speaker- guy she met out and about- but he got up in front of us- and started saying "antibiotics are literally poison- they will kill you" WELL- anyone who knows me- this was RIGHT after I could walk really well again from IV Rocephin- and it was just BLASPHEMY!!!!!There were NEWBIES there- who could have died from NOT taking abx!!! I lost my temper, HAD to say something, just stood up and said, "I can't listen to this, antibiotics saved my life!!" and LEFT. The alternative section of the group HATED me I think, no one has ever said that, but there were strong feelings of hostility toward me for that- and they were right. I was rude. But he was also out of line and an inappropriate speaker for the group. He was not an MD and had no credentials or science/medical education; he was advocating diet and nutrition as the only way to heal Lyme... and he did not have Lyme nor EVEN know anyone with it!!! ANYWAY, so the happy ending is that the group forgave me for MY intolerance, so the moral is, don't worry about messing up because even if you do I bet your group would forgive you as well!!!!!!!!!!!
the other moral of that story is: don't let a main speaker come without knowing who they are and what they are going to say!!!!! I should have never said yes w/o talking to him myself- he was NOT a healthy good person for our group- (still, I could have been polite and silent until the end!!!!!!!!!!!!!!!!!! well, *I* couldn't but I should have been-) the OTHER half of the group hated me for LETTING him come!!! That meeting sucked!!!!!!!!!!!!!!!
There- another moral- even if one meeting sucks, don't give up- we have had many great meetings since then!!!
Best wishes, Sarah
Posted by pmerv (Member # 1504) on :
Sarah, what a wonderful message.
If people are just getting started they could even have monthly group dinners at a local restaurant, to develop a core group who can help organize meetings. You can put a notice in the newspaper and see who shows up.
You can also join our yahoo group lymenet_leaders, which I'm trying to remember to pay more attention to since it's for activists who want to share ideas and tips and support each other. We are about to discuss whether to allow drs on the support groups. At least I hope others will chime in.
Be sure you also join your state group so you have access to people in your state, can post meeting notices, etc.
Posted by CaliforniaLyme (Member # 7136) on :
what group lymenet leaders*)!>?! I didn't get asked to join! I didn't even know it existed!!! I will look for it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I have SO many ideas re activism-