starting Puget Sound Support Group

[purpleviolet]

Hi to anyone interested in coming to Seattle for a new support group. Actually this is a restart of an old group that used to meet at Swedish Medical Center in Seattle. The room (Main 5 N. Conference) is still reserved for OCt. 6th, Nov. 3rd and Dec 1st. I'm starting the first meeting at 7:30PM. If anyone is interested in coming please private message me. Hope you can come.!

[Imustpee]

If only it was on the other side of the water! I live on the penninsula,,,going to Seattle is a royal pain...I have to go to Virginia Mason again tomorrow morning at 9am..which means I have to leave my house at 5:45am....

[purpleviolet]

Sorry you're so far! Check the boards. I'll try to report on what happens with the new group. Maybe people would want another time, but I don't know if that is possible.

[massagedoula]

I will try very hard to go, but I cannot promise that I will make it, since I am very busy with school. I will write it on my calendar and let you know in advance if I will be able to make it, it depends on my courseload at the time. I really want to go, though and plan to try my best to make it on Oct 6th at 7:30! Should we bring snacks?

[purpleviolet]

Hi Massagedoula. That would be great but don't stress yourself. The 2 former leaders won't make it untill Nov. I think. I'm planning on bringing some Evian water. If you do come and want to bring something, I quess IC friendly stuff would be important. Thank you for your participation in any way you can.

[Rhonda Rhonda]

I would like to come also, but live far away too....I work in Maple Valley and make the commute and have to get back by 3pm to pick up my kids from school. If you could tell us the out come of the meeting that would be great. Would there be any chance of having a meeting on a weekend. What kind of attendance would you get? I would have a better chance in going on a Saturday or Sunday in the afternoon.

IMUSTPEE: Where abouts do you live? I live by the Tacoma Narrows Bridge.

Thanks.

[Imustpee]

Hi Rhonda..I live in Bremerton..

[Rhonda Rhonda]

hi,

your not to far from me.

[Imustpee]

No, not at all... :)

[Rhonda Rhonda]

What is your name? I hate to call you by IMUST PEE :)

[Imustpee]

Lesa............ :)

[purpleviolet]

Hi to all interested in the group. I understand how difficult and time consuming it is to travel, but the most important thing is that we have the boards! This room at Swedish was scheduled from the old group before, so I'm just taking advantage of that for 3 times until the end of the year. I only sent letters to about 8 urology groups, and who knows if the doctors or staff have posted my notice. (IC moderator do you put it on the calendar?)So I am going to show up and see who comes! I will share any stories or info that I learn. If the group does take off, maybe we want to meet somewhere else or at a different time. Late Sunday afternoons are a good time for a lot of people.

P.S. Meeting is at 7:30 PM Thurs. OCt 6th Swedish Medicial Center at Broadway (parking underneath). Main 5 N Conference room.

[massagedoula]

I definetly plan to be there. By the way, I saw a flyer for it at the UW at my last appt.!

[purpleviolet]

Great. I look forward to meeting you. I knew that the nurse practioner at UW would post it. She went to a few meetings a long time ago I think. She's very supportive.

[massagedoula]

Is she Jean Kalhoff? I ask because she is my care provider at the UW...

[Imustpee]

I have an appt on Nov 7th to see Jane Miller.....I just called my uro and asked if there were any "I.C Specialist" on the penninsula....he said no, and that most of all the other uros he know won't even treat IC people...today is my 45 birthday and I asked if I could come in and get a Foley...they said yes! Pretty pitiful to get happy about getting a Foley for your birthday....but tonight I am going to eat and drink whatever I want..

[massagedoula]

Happy B-Day! Eat lots of yummy things and be happy!

I hope you like Jane Miller. I will see her on Oct 20th for my urodynamics (yikes!) test...

[purpleviolet]

Yes. She works with Jane Miller (the IC expert)and Elizabeth Miller. I usually would see her though ( I only saw Jane Miller once) because it is easier to get an appointment with her. I'm just trying a new uro closer to my house ( and my insurance considered Jean out of network I think so I need to check that).

[massagedoula]

I PMed you, Purpleviolet, but want to post too in case you see this first. Is the group still going on tonight? I am going to go, but I also found out about a film showing about midwifery that many of my classmates are going to. Of course they are at the same time! I think that going to the support group would be better for my soul, however, I want to make sure that it is still going to happen and people are actually coming so I don't miss the film showing for nothing! Please write back if you can...Thanks!

[purpleviolet]

Hi I went to my first meeting as leader and guess what? Noone came (Massagedoula was going to come but there was a traffic block)! But I felt like it was meant to be because as I asked directions to the room from a lonely nurse on the floor and told her why I was there she was soo happy to see me. She said she had IC and was getting lousy treatment from her doctors. I told her all I could in the 15 minutes she had - like what drugs there were, about Evian water and calcium citrate and about this site and the ICA (though she doesn't have a computer - but someone will help her with that)It was so worth it to be there. I felt like an IC angel!

[massagedoula]

I am definetly going to to come to the next meeting and I would urge anyone who could to be there. I think it is important that we can all meet face to face. I will hope that a few of us show up the next time! I sat in traffic for 2 hours because the freeway got closed, and finally turned around and went home....But I don't think that will ever happen again!