We had a really nice first meeting. There were two newcomers(not patients) and one patient who has been in treatment for about 6 months now in addition to Jeanne Towsned (an old time patient) and myself. We sat around in a circle and the speaker phone was in the middle of us. We all could not hear eachother super well. There were about 6 people on the speak phone. One complaint that came up was that the people in the room fel uncomfortable to say too much bc of the long distance technical difficulties. So, the goal next month will be to find a better way to connect us all so we feel we are truly together. 
We spent some time discussing general issues of IC that the newcomers did not know. A son (a grown man) came with his mother and said that he had noticed every time she ate peanut butter that she was worse. He told her doctors, but they insisted that there is no connection between diet and IC. Of course, you all know my feelings about that. I assured him his thinking was correct and that he was quite aware to have noticed it in the first place.
Everyone opened by introducing themselves and their brief histories. Some people spoke about how much better thye are, while others discussed how far they still have to go. One patient said how great she had been and now she was in a relapse due to not taking care of herself--not eating well for months after childbirth. Specifically I want to bring that up bc the biggest thing she did in addition to overdoing fruit, as in using it for meals, she was eating a lot of sushi. What shocked me, was JEanne, a very seasoned patient did not know my thoughts on sushi. So, I clarified in the meeting, and want to clarify here. I LOVE sushi. I ate it for years. But, while I was doing my doctoral work I started to notice that one of my very esteemed professors did not eat sushi when we would go out to an Asiasn restaurant. He only said "I do not eat uncooked fish". meanwhile, I was doing more and more research on the imbalance issue that lead to IC, and long story short, I have come to the conclusion that uncooked fish does increase the chances of a person getting a lot of bacteria in their systems that they just cannot handle in the condition of imbalance that they are in. I think people should stay away from uncooked sushi.
We also spoke about Chinses food and how commonly Chinese restaurants cook with msg. You must asked them not to if you dont want it. MSG is toxic to your system and, although none of you should be eating soy or Chinese food until you are much further down the line, for those of you who are further down the line, this is great information.
We also spoke about the immune system and how it overlaps into the digestive system, and discussed many of the concepts from my dissertation. Any of you who have not picked it up, please read it, it will help you so much! We spoke about medications and how they can affect your body pre-IC and during IC. One woman in the room had been on a few medications and seeming to have had a very hard time.
I think the thing that was really wonderful more than anything is that people began to speak to one another as best as they could with the deficient sound system that we had and were reaching out to offer advice when questions came up.
People commonly were bring up the changes in their lives that have occured during treatment.
We spoke about the importance of journaling notes to keep things objective and clear. So, that a person in pain and suffering could assist ehmselves in tracking their own feelings without subjectivity. It is common for someone to not want to hope for fear their dreams will not come true! the only things that a person can believe are the ones that they can see. So, journal!! 
Another thing that came up is that this journey towards wellness is really very different for everyone. This largely depends on how they became ill in the first place. Typically people having had larger and longer amounts of antibiotics over the years are the ones that take longer due to the greatest imbalances. However, that is not 100%, but it is largely true. This does not mean those poeple cannot respond, they just tend to respond more slowly.
I am doing this recount from memory. This is all I am remembering now whort of peopl's actual recounting of their own experiences. IF anyone wants to comment, please feel free. NExt month, we will post an agenda for the meeting. Mean time, stay well!