andcohen
10-24-2004, 02:22 AM
Ok not sure where to start or what to do but I have decided to do something!!!! This is not the type of thing that I do, I'm the type of person to sit back & hope someone else will do all the hard work to help me. But I have just come to reliase that if we need help that we are going to have to get off our butts & do it. I want to get the word of IC out there, particulary here in Australia ( and everywhere for the matter) but not sure what to do???? I have posted a new thread on the Aussies board for any help in this, so hopefully I get a good response. I would like to contact media, DRs anyone who might be of some help in this. I have read a few times that people have tried to get awareness on the Dr Phil show but with no luck yet..Here in Australia we do get the DR Phil show but a bit latter than what the U.S.A does. How about we try again?? & get as many people involved as we can. Surely there are a few of you out there that would love a few minutes of fame on T.V HA HA. But on a serious note there has to be a way to bring this horrid diease to the attention of others. We have a few A Current Affairs programs I would like to approach with this & I am sure that with the help of others we could manage something. There is no way in this word that you would get me to do an interveiw on the T.V but mabey the is someone from Australia that would be willing to do this? Mabey along with the help of a DR would be great. But I would try & help any other way I could. I have just found some good reading on the www.urologytimes.com web site if anyone is interested ( sorry not sure how add direct links - a bit comp dumb :loco: ) thats why I need :help: :help: I also found that a DR Anna Rosamilia from here in Melbourne had attended a conference in the US on IC, mabey we could get her on board with some help. I am going to email her & ask for any info or help. If I thought it was worth it I would even take the 7 1/2 hr drive to see her.
I am not real good at letter wrighting or Public speaking - no way- :ignore: But one thing I do know about me in life is I am determined to get my own way. So I am going to use that to get something out of this. ( I just wish I new what I was doing :hmm: ) If anyone can point me in the direction of some good articles on IC please do Anything on What IC is? What meds are mostly used? What research is being done? anything that may of of some use to me. On the other hand if you think I'm being a complete nutter then let me know that also.
My dream would be for all of Aussies to get together with as many of you & attend a whole long weekend conference or IC ,support group meeting & a get to know everyone gathering. Mabey we could drag along one of our DR's to come & learn everything there is to know about IC , so we could have at least one DR here we could related to. ( sorry need to pee back in a sec) Ok where was I - Oh thats right to be there in America with some of you & any professionals on IC would be the experience of a life time, we would all come out of it a wealth of knowledge and understanding. I affraid that no matter how much I read it still goes in one ear & out the other :bonk: I am not sure weather this is the right thing to do or say or even if it's legeal, but are we allowed to do any fundraising for these sorts of trips to take place? As we know may other illness and disibilites have fundraising programs for research and awareness, would be able to do that in any way at all????? Of course we would need to bring a long a Dr from here with us. But at least then they could be updated on all asspects of IC for any other patients here in AUSTRAILA. Then even if we had to travel to see this Dr at least it would we someone who really knows what they are talking about, & has all the latest research programs, meds on offer etc. Speaking of meds I have taken mine so this post going to go from bad to worse any minute now HA HA.
The last few weeks I have been ralleying aroud in my head what I wanted to say but they have all just flowen away :bonk: & now I sit here :dizzy: & have no idea where to go from here.
Well I hope I can go ahead with this with some help. What about you guys try & get the DR Phil happening ( I to will be in on that ) theres no harm done in trying is there? And I am going to contact this DR Anna Rosamilia from Melbourne & ask here if there is any way she could help if I contacted a local Current Affairs program here in Australia.
I don't know mabey this is all too bizzare :loco: Just thought it could be worth a shot....who knows unless we try.
Sorry I tend to rambel on a little.... Blame it on the meds HA
Thanks for listening & any info or words of advice would be great.
Andrea :confused:
P.S the direct link thing did work
I am not real good at letter wrighting or Public speaking - no way- :ignore: But one thing I do know about me in life is I am determined to get my own way. So I am going to use that to get something out of this. ( I just wish I new what I was doing :hmm: ) If anyone can point me in the direction of some good articles on IC please do Anything on What IC is? What meds are mostly used? What research is being done? anything that may of of some use to me. On the other hand if you think I'm being a complete nutter then let me know that also.
My dream would be for all of Aussies to get together with as many of you & attend a whole long weekend conference or IC ,support group meeting & a get to know everyone gathering. Mabey we could drag along one of our DR's to come & learn everything there is to know about IC , so we could have at least one DR here we could related to. ( sorry need to pee back in a sec) Ok where was I - Oh thats right to be there in America with some of you & any professionals on IC would be the experience of a life time, we would all come out of it a wealth of knowledge and understanding. I affraid that no matter how much I read it still goes in one ear & out the other :bonk: I am not sure weather this is the right thing to do or say or even if it's legeal, but are we allowed to do any fundraising for these sorts of trips to take place? As we know may other illness and disibilites have fundraising programs for research and awareness, would be able to do that in any way at all????? Of course we would need to bring a long a Dr from here with us. But at least then they could be updated on all asspects of IC for any other patients here in AUSTRAILA. Then even if we had to travel to see this Dr at least it would we someone who really knows what they are talking about, & has all the latest research programs, meds on offer etc. Speaking of meds I have taken mine so this post going to go from bad to worse any minute now HA HA.
The last few weeks I have been ralleying aroud in my head what I wanted to say but they have all just flowen away :bonk: & now I sit here :dizzy: & have no idea where to go from here.
Well I hope I can go ahead with this with some help. What about you guys try & get the DR Phil happening ( I to will be in on that ) theres no harm done in trying is there? And I am going to contact this DR Anna Rosamilia from Melbourne & ask here if there is any way she could help if I contacted a local Current Affairs program here in Australia.
I don't know mabey this is all too bizzare :loco: Just thought it could be worth a shot....who knows unless we try.
Sorry I tend to rambel on a little.... Blame it on the meds HA
Thanks for listening & any info or words of advice would be great.
Andrea :confused:
P.S the direct link thing did work