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ladybugs mommy
02-04-2010, 05:11 PM
hey everybody!

hope you're all having a flare free day, week.

i'm wondering about what types of services, programs, outreach, activities, and support regarding lupus that are available to you in your areas. i'm in northern california (western contra costa county actually, about 20 minutes north of san francisco), and there's an LFA chapter in the south bay (san jose) which is about an hour and a half away from me. it seems as though they have programs and activities but it's very sporadic, and info on their website is dated.

to cut to the chase, i'm seriously thinking of starting a non profit foundation for us lupies here in my area that offers a few different types of programs that address the specific issues we lupus patients deal with daily. i would love everyones thoughts on this.

thanks!

abbasgirl
02-06-2010, 12:05 PM
That is awesome Angela!

There is nothing for lupus support in my area. I think it would be nice to simply have a place to meet and share our experiences...especially with doctors in the area. It's such a gamble going in to see a new doctor. You don't know if you're seeing someone that is helpful or not.

Bonita
02-07-2010, 03:59 PM
We have a small group that meets the second Tuesday of the month at our local V. A. hospital and it is a very small group. Bonita

magistramarla
02-07-2010, 09:37 PM
Hi Angela,
I'm in Northern California, too - The Monterey Peninsula. As huge as San Francisco is, I would expect there to be such a group there. Have you checked with the UCSF Medical Center? I'll be going there for my treatment for Spasmodic Dysphonia in March, and I'll ask some questions while I'm there.
Marla

DrinkofWtr
02-08-2010, 10:58 AM
Sounds like a good idea. I am located in Southern CA and we have a lupus support group in my area that meets at Ventura Harbor Village at Christy's Restaurant Ventura. I haven't been to a meeting in a long time. I am going to find out when it meets. I forgot what day it does meet. I know it meets at noon but the one day of the month it meets alludes me. I am going to find out what support they are providing at the present time.

ladybugs mommy
02-08-2010, 11:23 PM
hey ladies! thanks for the info, and confirmation that this is something that's needed.

well marla, no, there's nothing really like what i have envisioned. there's the LFNC (lupus foundation of northern california), but they're in san jose, and like i said, although they have a slick website and seem to have some activities and groups, they're just too far away and don't seem to be consistant with they're activities and programs. what about fellow lupies that are in san francisco, marin county, alameda and contra costa counties? i'm just an easy 15-20 minutes (and a soon to be $5 bridge toll) north of san fransico and there's nothing.

there was a group in san leandro, next door to oakland, but the 'leader' passed away (i think due to sle complications), so it's on hold till they find another organizer. although unfortunate, that's what i want to avoid. why should the group disband? the members should have somewhere else to go that doesn't involve a 45-1hr drive (if you can even drive!).

so what i have in mind are a website that at some point i'd like to incorporate (as a link) 'we have lupus', and several programs and activities involving health and wellness, small conferences with local doctors/health professionals, medication assistance, and of course face to face group meetings (but in a different formats) among other things, and lots of fundraising to help support these programs. i plan to start locally, but with the ultimately take it national.

i feel strongly that i'm being called to do this, just as i feel how my life coaching practice is my 'ministry', and i'm trying to gather as much info as i can. so what are your thoughts on this? what's been your experiences with other or current support groups? (i know that one i've gone to before was more of a complain-fest than anything and it turned me off - i was looking for support). what so you think is missing from existing resources or groups? what would you like to see?

thanks for your help my friends, do appreciate this!

magistramarla
02-09-2010, 07:51 PM
Angela,
You've got some good ideas. I was in a support group for Spasmodic Dysphonia back in Texas. It was great to get to meet others who talked like me, but they were a bit disorganized.
The best and most organized support group that I've been involved in was La Leche League, a support group for breastfeeding mothers. I was a Leader, and I had to take training for it. The meetings were fairly structured, and went on a revolving schedule of 3 or 4 meetings. (It's been a long time, so my brain is fuzzy) One meeting would be on pregnancy and preparing to breastfeed. The second one would be on The baby arrives and getting started on breastfeeding. The next one would be on tips for day-to-day breastfeeding, and the last one was on weaning and nutrition - Gradually and with Love.
I'm thinking that the same sort of thing could apply here, sort of like the forums on WHL:
1. Symptoms of AI, getting diagnosed and dealing with doctors
2. Medicines that are commonly prescribed and how to deal with them
3. Nutrition, vitamins and exercise for people with AI issues
4. Talking with family, friends and co-workers about our disease
Those are just some ideas that I could come up with. Face-to-face support groups that are structured and connected, no matter where you live, would be very helpful in my opinion.
Good luck with this.
Marla

ladybugs mommy
02-10-2010, 08:12 PM
hey marla thanks! those are some great ideas and a great place for me to start. i'm getting busy, have started the paperwork required by the state and IRS, have contacted several community spaces (libraries, community centers, etc..) for meeting space, and am planning the first fundraiser! will keep you posted.