Anyone in Los Angeles?

[melbel]

Hello, I'm an IC patient in Los Angeles looking to talk to others with IC. I'm 27 and have had this condition since 1995. As you all know, it's very isolating and difficult and I would like to talk to others in my area who have the same problems. Unfortunately, I am not as brave as some of you and do not have the courage to be vocal about my condition. Instead, I hide it. While I've found inner strength in dealing with my problem, I have also found lack of compassion and empathy in people I thought could be counted on. Anyway...it would be great to talk to some others who are going through the same thing.

[curlycue]

Hi and welcome

[Babs RN]

Hi!
My name is Barb and I live in So Cal also. I am 33(34 next Friday) and would love to meet a new IC friend. Let me know.

Hugs,
Barb :welcome:

[icnmgrjill]

There are LOTS of GREAT IC support groups in the LA Area, including the wonderful Orange County IC group! It's one of the best places to live in the USA when you have IC.. and, best of all, they can share who they feel are the best docs in the area.

Find their list at: http://www.ic-network.com/activism/supportgroups.html

Jill :)

[curlycue]

Hi Barb,
Hey arent you the one that sees a dr in Temecula? I forget his name I think its dr Broadak or something like that? or do I have the wrong person.

[curlycue]

Jill,
I never new that we had that here in the IC Network I guess you learn something new every day. Thanks

PS I still have not gone to see Lowell Parsens I am still afraid?

[Babs RN]

Ruth,
I see Dr. Barker at Loma Linda.


Barb

[curlycue]

Ok Barb,
I guess I might be confused. Some one adviced me that this dr was a good uro and indead he is. I decided to stay with the uro I am seeing right now in Upland she is wonderful.

[Lmarks33]

Hi there,

I live in the LA area and was diagnosed 3 years ago with IC. I am 36. If you ever want to talk or vent, feel free to contact me as I know how horrible of a condition that this is to live with.

Laura

[melbel]

Thank you to all who responded. I've never met anyone else with IC before. For some reason I have never wanted to get on the message boards before, but now I feel like I need to talk to other IC-ers. Lately, I've been very angry. I feel like my life is never going to move forward. All of my friends are living their lives to the fullest. It's painful to watch them and feel left behind. Since I choose not to tell people about my condition, people don't understand why I tend to be on edge and don't go out and do the things that they all do. I've chosen not do this because of past experiences. It's sad to realize that people are not as compassionate or as empathetic as they think they are. I'm rambling, but today I need to vent. I'm just very tired. Don't get me wrong, I make the best out of the situation, but as you know, sometimes it's hard. It affects my work as well. I'll be in a meeting and I won't truly be listening to what anyone is saying because I'll be thinking "When is the meeting over?" so I can get the hell out of the room. I have to say though that I have discovered a tremendous amount of inner strength which has been a positive. I have also realized what qualities I want in people and that I shouldn't waste time with those who don't deserve my time. I'm probably not making sense, but it's the end of the workday and I'm exhausted.

[curlycue]

Melbel,
I think we have all felt that way one time or another. I know that its so hard. I know that for me it was harder when I was younger know that I am older I kind of just try not to get in that anger mode cuz it brings me down way down. I hope that this site can help you vent or scream or just cry. I know that some times I just need a good cry and then I am ok. I admire that you work and get up ever day to make your day. I am not able to do that any more. For me just getting up in the morning and sending my girls to school and being there for them for what ever they need is enough. I used think that if I did not keep my house clean and everything in order that I was a bad mother, but i dont care anymore. I just take care of myself and my family and that good enough for me. I am sorry I am just venting my self. I hope you have a great day tommorrow.

[Zanni2]

I know it's hard to tell other people about our IC because we fear what they will think; however, I think it's important to tell your supervisor and perhaps also co-workers about your problem if it's interferring with your work. Otherwise, they might think that you're just goofing off. If you need to go to the bathroom during a meeting, you have the right to excuse yourself and go. How could anyone expect you to be able to concentrate if you're uncomfortable or in pain because of your bladder? :yikes:

Fortunately for me, my supervisors and co-workers are very understanding about my frequent bathroom trips and they often ask me how I'm feeling. I consider myself lucky to have their support. I've been an IC patient for five years this month, but didn't get diagnozed until last May. Currently I take Ibuprofen for the bladder inflammation and Elmiron (as an instillation) to help repair the bladder lining. They help some. Hopefully more with time.

I'm glad you found this support group. Know that you aren't alone. Before I discovered the IC Network, I also felt alone with my IC and didn't know a single soul with this condition. I guess it's not that common. Good luck to you and I hope you find the treatment or treatments that work best for you.

Zanni2 :angel: :grouphug:

[curlycue]

Hi Zanni,
You are very luck to have coworkers and a sup that understands. I was not that lucky. I used to work for a Mortgage Company for 4yrs and I really enjoyed. Last year I had a IC flare for 5 months I kept on getting utis and had feaver and I was in all kinds of pain. I took that time off and when I finally was able to get to work they kind of looked at me funny and when I would go to the bathroom they would go looking for me. I finally got fed up had my dr give me a note and they just blew it off? I finally got fired in March of 2004. I was kind of sad but I guess it worked out for the best. I have a 9th grade daughter that is involved in alot of school activities and a 5 yr old that just started kindergarden, so I am glad I am able to spend time with them.

[ManIC]

IJm male from orange county/L.a. area..any support groups around this area?