Hi all,
I'm so glad I found this website. Thank you so much for your support and quick responses to my posts. Does anyone attend an in-person support group? I live in NYC and have found one meeting next week and I plan to attend. I'm wondering if there are others, and what your experience has been with them.
Thanks!
Melissa
This has nothing to do with your ? But I just had to tell you how much I love your post photo!! Hope you’re feeling well.
I have tried them off and on for over 30 years now.
Here is my conclusion...that if you find a group that is widely diverse or you connect well with it...and try to give it good 5/6 months if they meet monthly to see if you connect....if you do it can be one of the best things you will have going for you! Seriously!
One group that i liked the best and went too for years...we really got to know one another. In general the topics are much more intimate than in most forums. Maybe because we see the real person and look in their eyes. Plus, we really tried hard to give support if one of us got either really sick or was in the hospital. Be it help by cooking a meal (or buying a take out) for their family. Help with the child care...even bring them to visit. Take notes when the doctor come because they were too tired to really understand anything said...think all you know how that feels!
Just really try our best with all our own limitations to help one another.
Also...you really see how each of us has it so differently which makes you really understand why it is so hard for doctors to help us. We also helped one another a lot by helping figure out what was caused by lupus or just reg sickness of some kind. That was hardest...know what is lupus sick and what is reg or just getting older etc. So if you have diverse group everyone can really help in this area.
If you want to find out who are the best doctors in your area...this by far the best way to find that out!! If you have decent size group of course....but what i may like another person does not...so you can really narrow it down to your type and sure saves in either trying different docs or spending time with one you just barely like.
If they have groups in your area....i would urge all of you to go. Especially for those who are also trying to get on some kind of disability...usually ..in all i have seen...they have tons of information. I learned a lot from them, plus a sister has a degree in labor law as well as labor law was discussed regularly growing up. I still learned a lot more from guy i hired who use to work for them.
You also can learn about services in your area, either offered by county, city, state or feds...so just great place to find out all kinds of information. Usually....one or two run it but many if connected with hospital have a counselor who is there to give free services during the meeting time.. Plus you have speakers ...so you can meet different doctors and others who will speak about newest research, studies and drugs.
Yes you might be able to find all of this on line...but the giant giving hearts plus the amazing differences in out looks on what you can and cannot do on SLE! I heard of people leading more than just regular lives and that gave me the courage to say I will too! All i can say is the support sure made a huge difference in my life and i would say the majority of all the people in the group that I am thinking of.
I would think that NYC have a number of groups....so if you might try more than one to see which fits with you....but try them..i really think you will love the support! Great way to make life long friends too!!