I think it would be great to be able to search for people who are in your area so you can "network" with them and discuss doctors, support organizations/groups, etc. I know I have had a hard time with doctors not listening and talking to me like I have an MD. I also find it hard to cope sometimes with nobody to talk to in my area (like a support group) that actually can relate.
In the meantime, if you are in Georgia, check out the group this group and let's get some members...
Jason, you CAN search by area. Go to the far upper right corner to the search box and enter a city or state. Members and discussions about that city or state will show up. I was the leader of a local lupus support group since 1984 until the internet offered them. It was so difficult to get members and leaders to show up because they were all so sick, so I find the online groups a real benefit now that I am homebound.
Best wishes, Sheila
Great idea and thanks for the feedback Sheila. I was interested in real time support group in my area, but I found LWL instead.
Trisha
Hi Jason,
I can understand where your coming from to meet with people but it's also like Sheila said if main members are ill and can't turn up, then your missing the heads of the main help there.
Joining LWL was the best thing i did and you can make some lovely close friends even though it's through the net...the contact and communication with members is outstanding...regarding to relating to problems and what each and everyone of us go through daily.
Terri :)
I think that is a FABULOUS IDEA! Last year I wanted so badly to start a support group in Santa Fe, New Mexico! I called the Lupus Foundation in Albuquerque. What they told me was that I would have to go to Albuquerque (during the week only because they weren't open on the weekends) and spend the entire day there reading this big huge manual on the requirements of starting a support group. Told them I wasn't able to get there during the week as I work. Then they said, well, if you want to get involved we are having a golf tournament and we would love to have you work as a volunteer to help raise money. They left me feeling like they were not even interested in offering support but needed money. Didn't leave the best taste in my mouth of the Lupus Foundation! Sheila - I see your reply below - didn't know it was searchable. Thanks for the tip - I will check it out. This group is absolutely the best! I have learned so much in just the couple months that I found you. THANK ALL OF YOU!
Hello Jan,
Thank you also from us all for joining and being such a great member.
Hugs Terri xxx
I'm happy to provide input if/when I can help! That's the only way we're all able to "cope" with our day to day things. How are you feeling?
Hello Jan,
I'm just pleased i've dropped on a great rheumo see him again on the 30th november as he'll want to know if i want to trial IV infusion for Rituxan...upping the plaquenil as helped my spasms but otherwise the sjogren's does my nut in with everything else involved.
Lovely to see you on here:)
Jan said:
I'm happy to provide input if/when I can help! That's the only way we're all able to "cope" with our day to day things. How are you feeling?
You are such an amazing person! With everything you deal with on a daily basis you still manage to make sure we're all doing ok. I thank you for being my friend!
Hello Jan,
I do have my occassions where i need to rest like everyone and especially with my eyes besides now but i've got so attached to you all...i just love keep intouch and sharing knowledge best as possible besides.
I thank you also for being such a dear friend and i love your positivity such alot now from when you first joined...well at least you know you've got a large family to turn to with us.
All my love to you Terri xxx
Jan said:
You are such an amazing person! With everything you deal with on a daily basis you still manage to make sure we're all doing ok. I thank you for being my friend!
Jason, I love the concept and totally agree!!! Wish I were in Georgia so we could support one another. I feel the same way about the docs and wouldn’t it be nice if we found one we could talk to and who actually listened!! Good luck!!!