Hi everyone! I was wondering if any of you would give me your opinion on local support groups? Do you have any in your area, if so, have you been to one of the meet ups? May be a few pros and cons? Are there any formal lupus organizations in your area? Do you participate in any of the activities or other events they have? I have some ideas and am trying to get some feed back. Thank you so much!
Hi I do go to a monthly support group for lupus. I find talking face to face with others who have lupus is very helpful. We have a local lupus foundation as well. We share what has worked as well as what doesn’t . The format is informal we meet at a local restaurant for. 2 hours. The amount of people who participate varies from 4 to 10.
I wish you well on your journey;)
Our little town had a support group, but most of the time no one was well enough to attend, so we didn't get very far. I have seen bake sales done by healthier family and friends, and the lupus walk each year,
Unfortunately in a city of 2million people, we really don't have any support system. Although a Lupus support group would be ideal, there are others that may be applicable... i.e. chronic illness, grief, cancer, etc. I would ask your Rheumatologist or pain management specialist for a referral or do like I did and reach out to others on this site in your area.
We are always here for you as well.
Big hugs,
DeAnne
Thanks, big hugs back! I have a service dog to help me! She is a great blessing!
When I look in her eyes when I'm flaring is like having an angel near bye!
Lyn and Miss Beale
Thank you all for the feed back. :) I wanted to do monthly family events for people with lupus and their families, but the first event no one showed up (a movie night). I am planning on another event so I am hoping this one goes better. -Alisha AE
I wish you all the best on your group. As I said, I tried and it didn't go anywhere but try, try again. Were I closer I would be there in a heartbeat. One thing that I was told was that some felt uncomfortable coming to a strangers house. I suggested meeting at a park (although it's a bit cool for that) or at a coffee shop. That might be another option although a movie night sounds like fun.
Big hugs,
DeAnne
ALupusHappyPlace said:
Thank you all for the feed back. :) I wanted to do monthly family events for people with lupus and their families, but the first event no one showed up (a movie night). I am planning on another event so I am hoping this one goes better. -Alisha AE
Why don’t we have a FaceTime group meeting? Is that possible?
Hi Anniefancybo! My goal is to have in person events. My hope is that people will have fun and kinda forget for a moment about all of their worries. Plus, I love hosting & having get togethers and just having fun with people. :)
Anniefancybo said:
Why don't we have a FaceTime group meeting? Is that possible?
Great idea! I live in Texas! Where are you?
In the DFW area. I actually live in Fort Worth, but am going to try to do the event in Arlington since it's a little closer to Dallas but not so far for me. What TX area do you live?
Anniefancybo said:
Great idea! I live in Texas! Where are you?
I live in Waco Texas!