My first support meeting !!

[andcohen]

Well it's done :woohoo: On my way home from work today I booked our flights to Melbourne for Tuesday the 7th of Dec. The meeting is being held at the Mercy Hospital & I can not wait...... Just my hubby & I were going to fly down for the day & back that night, because it would be much easier without Choen ( he can be a little terror) But yesterday I said to the hubby that I would love to bring him to see the the great Chrissy stuff the have in the big city stores. Mabey he is a bit young to really understand, but surley he will thinks it's great for at least 20mins HAHA Long way for 20mins entertainment. My Mum is going to come with us so thats a great help, when Justin & I go to the meeting she will be able to have Cohen for us.
I am sooo exciated about this, it just popped all of a sudden & now its like wow I'm really going ( this is the first time in 15yrs I have been exciated about having IC) Well lets not get too carried away I would much rather just going to Melbourne for a shopping spree. And it is an expensive support meeting as the flights just cost me $650.00 But it is just too far to drive in one day.
The best thing is hopfully the DR whom I was wanting to get an App. with is going to be the guest speaker. She has been to America for an IC conference earlier this year, so will hopefully have some new info to bring back for us Aussies.
Sorry to go on & on but I feel like this could be the best present in years. Mabey I will come back with something new that will give me back a half way normal life. ( mabey I shouldn't get my hopes up too much)
Well I have been awake since 4.00am & it's now 5.30am so I better try & get a little more sleep before Cohen wakes.
Thanks for listening.
Andrea :) :)

[Rosalie]

I will look forward to meeting you Andrea. Perhaps we can get some more ICers on to the boards. You must have a very nice husband who wants to be with you at the meeting and who would willingly go to such lengths for you.

My cherub won't even take me to or pick me up from the hospital next week. It is left up to either my son or one of my friends. His farmer brother is down from Qld and they are suppossed to go to Horsham to look at a tractor. The only way he will take me is if that trip is cancelled.

I've just deleted a whole string of *****ing about him because we are to excited about this meeting. Aren't we?
I was going to say how alone I felt but this isn't true anymore. I have all of you on these boards and especially my Aussie friends that I will hopefully meet soon. :kissing:
Roll on the seventh!
Rosalie

PS I see my naughty word referring to female dogs has been erased. Perhaps I should have said " string of invective"?

[andcohen]

I am so glad that you can make it Rosalie....
It will be very daunting work into a room full of people that you don't know, But at least we sort of know one another HAHA. I can not wait for this :woohoo: I hope we get question time as I have got alot of info on things tried in the US but dosen't appear to be here.
How will I know who you are, So at least we can find one another before it starts? I give you a bit of a discription of Justin & I so If you think you have found us just come over & introduce yourself. Justins easy..... very tall (app6.4ft) medium brown shortish hair & med build & I think not too bad looking. (well I did marry him) Me well that is a different story. Ave height. short, dark almost black hair & about 4 stone overweight :headbang:
If you want to let me know a little about yourself just so I know who to look for.
Ok better go now getting tired, talk to you soon.

[Rosalie]

Dear Andrea
I wonder how many other Icers have a weight problem as do I. Sometimes its the only comfort we can get. If that's the case, my size may not be the give away as to who I am. I am 5'2", have short sort of fair hair ( I forget what the colour was on the box this month) and I wear glasses. And I'm a bit (Oh alright a lot) older than you. I'll be the one with the nervous expression and probably a silly grin as my kids tell me.
You know what Elle Macpherson looks like?......
Me to... but I don't look anything like that Alas!
I'm getting a bit nervous about next tuesday at St Vincents ( not the Mercy). I've been reading the boards on Cysto / Hydro.
I'll stock up on Panadeine Forte. Knocks me out, good thing Ha!
Rosalie

[anxious one]

:woohoo: So glad for both of you!!!!!!! My Gosh Andrea, is thats eriously the closest support meeting to you??!! Well, make a day of it, enjoy yourself, it's great that Justin is being so supportive!!

Rosalie, I just don't know what to say about your hubby... as we have already discussed, men can be such insensitive you-know-whats :rolleyes: How unthinking of you that you should schedual your cysto at such an inconvenient time for him!! :rolleyes: Well, at least you know we are all here for you and thinking of you.

So glad that you guys will meet!! As you have seen with Nadia and I, it is so great to literally meet (in person) another ICer. Good luck!!

Hugs,

Sara
P.S Andrea- I had my appointment with the centrelink guy on Friday, WHAT A JOKE. :mad: I don't have time to write about it now but put it this way, I'm drafting up my appeal as we speak.

[deviation72]

Hi Lovelies,

Good to see you all! Good luck at the Melb support group meeting on the 7th Andrea and Rosalie - I can't make it as I have a committee meeting that day I can't miss, but Christine Murray has put me on the mailing list to be notified of other meetings coming up. I would have doubly loved to go to meet you both!

Rosalie, Andrea - I'm also a little over my normal weight by about 5-8 kilos, but am blaming the Tofranil not the copious number of Tim Tams I consume to comfort me when I'm in a flare! Apparently the "IC belly" is not uncommon, and when I'm flaring I feel extra bloated too. I said somewhere else here once, though, that I'd rather stay on Tofranil and be heavier, than be skinny and in pain!

Sara - hope all is well with you, apart from the Centrelink stuff.. .

Andrea - I took your advice about the Ditropan - went back on it Tuesday morning, taking only 5mg in the morning, rather than 5mg morning and night, and so far it's OK - will keep you updated!

And Rosalie - good luck with the cysto. I found that for 2 days after wards it stung when I went to the toilet, and I had bladder pain, but it went down fairly quickly with some rest (and lots of watching videos!)

Hugs to you all! :grouphug:

[anxious one]

:bunny: Hi Kirsten, great to hear from you! It's a shame you can't make it to the meeting so you could all meet up.

I guess I am still "average weight" but I certainly get the IC belly. Sometimes my belly is so bloated I look pregnant. I am a couple of kilos heavier than I was pre-IC but I was probably underweight then. None of my clothes fit me now I know that much! :rolleyes:

Yeah I am still furious over my run in with centrelink. My "work assessment" :rolleyes: went for 20 mins rather than the allocated 1 hour and the guy was an arrogant rude jerk that fired stupid questions at me, barely let me get a word in otherwise and actually cut me off at the end when I tried to tell him how badly IC affects my life. He got me to bend over and touch my toes and a few other stupid irrelevant things. :mad: Honestly, I was so angry about it. I am just waiting on the rejection letter and then I am going to appeal my guts out!!! :rant: Other than that I am ok, flaring a bit but self induced- I went to an animal lib xmas lunch on saturday and ate curry puffs and vegan pizza amongst other things... YUM!!!! than topped it off with soya sausages and a mango on Sunday night. :rolleyes: Some times you just have to live a little!!!!!

Hope you all are well,

HUGS,

Sara

[Rosalie]

Dear Andrea
I surely hope that you check this before 7th. Where exactly is the meeting being held? I rang the Mercy who told me to ring someone at St Vincents, they thought the meeting was there! Rang and left a message.
Rosalie

[andcohen]

I just sent you an email Rosalie so I hope that clears things up for you.
Chris is the right hand lady with all the support groups so her info shoud be correct.
check your email you shoul have it by now
andrea

[Rosalie]

Today I attended my first support meeting in Melbourne. :woohoo:
How wonderful it was to meet you, Andrea, and your very dishy husband. Lucky girl. The fact that he made such an effort for you in flying you all to Melb and asking questions for you while you were on a "pit stop", just amazes me. Having someone to share the burden of IC with must help.

I felt quite over-awed by the whole event. To see so many fellow sufferers, real people was, for me, a relief. Not that I want others to suffer, but I wasn't alone anymore.
Christine Murray is a wonder woman. Listening to Anna Rosamelia speak gave me some hope for future treatments. I was quite interested in joining the study on BoTox until I realized that one could not use any other treatments for the 15 or so months. OK if you were on BoTox, but not on the placebo. I noticed many others scribbling away until this was pointed out.
However, the person that stuck in my mind, was Cherrie and the plight of her daughter Charlotte. For you other ladies, Charlotte is 14 and in constant pain. Currently in the Childrens Hospital, there is no paediatric urologist familar with IC and as she is under age,so no other urologist will take her case.
We can only hope that she gets onto this site ASAP to find support from others who can empathise with her. If her mothers frantic search counts for anything, there will be some comfort in the future.
I look forward also to meeting Cherrie here as well. It must be terrifing for her.
But this is what these meetings are about... to give help, support and information.
Three months to the next meeting. I will be there. Andrea I hope you can come again and Kirsten,I hope you can come also, we were thinking of you today.
Rosalie

[anxious one]

Yay!!!! :woohoo: I'm so glad your meeting went well and how wonderful that you were able to meet, Rosalie and Andrea!! It is the most amazing feeling to look around the room and think, "wow... these people ALL have what I have... I'm not alone anymore!! :) "

Andrea you must post a photo of your, "dishy husband!!" LOL ;)

As for the Botox, my uro had me ear marked for that, she is pioneering the trial actually, but I was turned off when she said that the treatment can sometimes work "too well" and you will not be able to urinate. Consequently, you will have to be catheterised daily til it wears off... could be up to a year!!! YIKES!! No way, sorry.

That poor little girl, what an awful, awful thing to happen to someone so young... at least she has her mums support.

Yay for both of you again!!

HUGS

Sara

[andcohen]

Hi Guys,
I did start a post last night when I returned from Melbourne but I so so tired I had to leave it & go to bed. Well what an amazing day :woohoo:
Rosalie...... What can I say but Thank you. To have meet such a careing & lovely fellow ICer is something I will never forget. I was so nervous about meeting people face to face. It's so easy to be able to talk to people online but in person it can be a bit different. I felt so at ease talking to Rosalie & I am sure we will remain true IC buddies for a long time to come.
I am not sure if I will be able to afford to get down to the meeting in March but the one after that I will be there for sure. Kirsten, as Rosalie said we were thinking of you today & hope we can all make to a meeting soon.
As Rosalie has mentioned we meet a very lovely & desperate lady in Cherry trying to find help for her 14 yr old daughter. I could see she felt very lost & hurt with the whole thing but I do hope that she has come away with a little bit of reasurance that there is support for Charlotte. We told her about this site & hope they will join in the IC family here.
Well that was my day.... A very exciting & tireing day. A day I have thought about for many years & for some reason never been brave enough to do. But thanks to the people here for freindship & support I finally did it. And it was good get advice & support but mostly I feel good about being able to support to Cherry & hopefully Charlotte will have some where to come if she needs help & understanding.
Andrea

P.S Rosalie I will tell Justin you thought he was " Dishy " I'm sure he will get a laugh :biglaugh:

[deviation72]

Hi guys,

Firstly, well done Rosalie and Andrea for your first meeting! I am so sad I missed it, but will defintely try and make it to the next meeting if I don't have a committee meeting that day. That poor woman and her daughter, I really feel for them - I often get down about being in my 30s with IC - I cannot begin to imagine what it would be like to be 14 with IC, nor watch a daughter go through it. I too hope both of them find their way to these boards so they can lean on us all for a bit of support. I know I wouldn't have survived the last 3 or 4 months without all of you! :grouphug:

Hope everyone is having a nice day,