IC Meeting today

[Tracey5399]

Ok i see the just venting is temp out of order so this is where i am venting today.
I just came home from an IC meeting and i must say i am so depressed & sad. I heard such horrible things about my Uro, my god she is so good to me. I just can't understand how she could have treated other IC patients ( not just 1 ) so horribly not writing them dissability letters etc...
Well she did all that for me & more.
Than we were talking about pain killers and the second i mentioned i was taking oxy this guy in there was like OMG what are you crazy! he said he tried them awile ago just to get high and they messed him all up, Well i am not taking them to get high i take them cause i have a chronic illness with dibilitating pain thats what i told him and he shut up!
I am just so upset i went to the meeting today for support and info and all i got was my nerves worked up & now i am sitting here and crying. Don't think i'll go to another meeting. Even my support group leader said she doesn't like my Uro, but as long as i am getting help thats all that matters. I feel awful i feel like i am now not getting the help i so thought i was getting. I feel lost and alone. I just wish this disease would go away & leave me normal again. I really thought the meeting would help me, i am actualy sorry i went now.

Thanks for letting me vent,
Tracey

[ICNDonna]

It sounds like your support group leader could use some help. It's just not a good idea to allow trashing of a physician, or any other individual, at a support meeting. Support groups can be very helpful.

When you're feeling a little more calm about it, you might think to contacting the group leader with your comments --- I'm sure she would appreciate knowing how you felt about the meeting --- you might even offer to help?

Warm hugs,
Donna

[kdfurgi]

Im so sorry you had to go through this Tracey. I wish you had got the support that you want and need. Like you said though, as long as your Dr. is helping you I would not worry about what they said about her. I have had a Dr. that turned into a jerk after I went to my Uro (he is a Ob/Gyn) and the only thing I can figure out is he did not like that he was not my only Dr. anymore (I didnt have a PCP at the time), but I have a friend with IC (we grew up together and have no idea how we each got IC...) and she goes to him. He doesn't act like that with her, but she also had already been going to a URO before she started seeing him...Some people just don't get along with some drs that others do. She doesn't get along with my URO, but I do and have never had any problems with him. I agree that you probably shouldnt go to that support group anymore, atleast if you didnt get the support you needed and it sounds like you didnt. I dont have a support group around here, but I dont think it is right for people to act that way and hurt someone's feelings when they went to the meeting for support. I hope you feel better soon...sending warm thoughts

[Tracey5399]

Thanks ladies for replying so quickly. I so appreciate it.
Yes Donna at another time ( when calmer ) i think i will discuss it with her.
However i know her feelings towards my Uro & i know why, she has been told many horror stories of the same Uro. So i believe she just wants me to go to someone who she knows is helping alot of people.
My Uro does not like to treat IC patients ( not that she ever said that but yanno how you get that feeling ) but for some reason she helps me & 1 other girl and thats it!
I am very confused now about switching doc's, but what is another Uro gonna do for me that myn isn't. I have the IC survival guide i know the treatments etc..
Maybe i am just being over sensative ( gee imagine that ) LOL. Just wish today went differently is all.
I'll shut up now ;)

Thanks again ladies,
Tracey :)

[~*~Christine~*~]

I'm sorry, Tracey. If your pain meds are helping you than that's all that matters :grouphug:
My mom talked to my uro about disability when she was asking him to sign the forms, which he did, and he said they (doctors) don't like putting people on it unless the person has severe physical symptoms of IC during a hydro since the medical board will come down on them for putting people on it without enough proof to back it up.

[Tracey5399]

Thanks Christine for the support. Yes the pain med i take does help, i don't even need to take it all the time anymore only when a flare is unbearable.
Thanks also for telling about SSI, My Uro knows i have IC she belives how much pain i was in at the beginning.
I felt so bad yesterday when this girl about the same age as me had such horror stories about the Uro i go to. She wouldn't do anything for this girl that she has done for me. But i don't know the other side either.

All i know is i am grateful for these boards and you women & men that have helped and supported me. I am def taking Donna's advice to speak w/the support group leader at a calmer time. I would never want to put my support group leader down she is a wonderful woman w/a world of knowledge on this disease and has helped me so much. I am just very dissapointed about what people are saying about my Uro. Who knows maybe they are right and for some reason she wants to help me.

Yanno it's bad enough we have to deal w/an uncurable, mysteriosly painful disease, but than to have to fight for treatments etc... just seems all a bit too much.

I will say since i have been working w/my Uro & taking the meds I AM DOING BETTER!! So as they say 1 man's trash is another man's treasure.

Thanks again,
Tracey :)

[icjen]

I agree that people shouldn't be trashing a doctor like that. And to say that oxy is bad because one person abused it, isn't very fair to another who uses it FOR PAIN. It sounds like this might not be the best support group for you. If you are happy with this doctor, there's no reason for you to find another. Not everyone will have the same opinon about a doctor. You'll always find people who didn't have a good experience. We can't always take someone's adivice to heart, because they only understand what they have experienced. Like you said, one mans trash is another mans treasure.

[Kara Isabel]

Hi Tracey!

Sorry to hear you had such a bad experience at a support meeting. I have noticed that IC people tend to have very strong opinions about uroligists....but if your doctor IS helping you so much, I would stick with her! But I'm sure it was upsetting to hear that she treated someone else badly. I suppose doctors are human too......I think they like some patients more than others, just like any job! I like some investors and others drive me batty....but I guess it is more complicated when a person is in a profession aimed at help and healing, ehh?? :hmm:

I'm having a similar situation with my new uro, everyone LOVES him.....he's great, he's GOD, he's a wonder healer.....but he wouldn't let me try the cytotek that he's given others!:hmm: And wouldnt' even really tell me why. I think he was put off that I was in "pain management"? (he doesn't give pain meds to IC'rs) But who knows...

And I would just completely *ignore* the remark from the guy that ABUSED oxy! I mean....abusing drugs and pain management are completely different! Don't ever feel ashamed about managing your pain! I think its great that you stood up for yourself and put him in his place! You go girl!

I agree with Donna, I would contact the group leader and voice your concerns about the meeting turning into a doctor bashing session.....sure, everyone has an opinion on uros, but the meeting should be focused on healing and treating. Did you tell anyone that your doc has been so helpful?

hugs,
Kara I.