New member (Bek) just joined this website

[miracleshappen08]

Oh, my I can relate with a lot!! Don't ever believe everything the doctor tell you!! I was to NEVER have kids!! I have endometriosis, divide uterus, and WG. I was on treatment for 18 months when I got married and then I got pregnant with my first! 14 months after having her I got pregnant with my second. I have been blessed behind what the doctors every told me was possible!! Yes you have to be careful and listen to your body, but that's the thing you are the only one that knows your body well. Don't EVER EVER give up!!!

[annekat]

Bek, are you on prednisone, too? Most people are but I didn't see it mentioned. I would expect that to cause the weight gain as it does for many. Don't give up hope, now that you are on the Mabthera and it is working, you may get into remission soon and be able to get back to a more normal life, and hopefully get off the pred, too, if you are on it!

I don't quite understand the part about playing the clarinet. I also have no sinuses and my septum and turbinates are gone, too. I don't play an instrument but when I blow into something with my mouth, I don't think air comes out my nose. But I can make it come out my nose when I want to. Maybe I'm missing something here. I know nothing really about playing the clarinet.

[Bek Stone]

Yea sorry I am on pred I forgot to mention that and with my clarinet its kinda hard to explain because you don't just blow you have to blow and bite at the same time and you use alot of your facial muscles I can play afew bars but not a full song because air and a funny kind of sensation happens with my nose its like rolling your tongue like on r's but thro your nose its hard to explain its easier to show it just makes it difficult to breath if that makes any sense at all lol

[Bek Stone]

Oh, my I can relate with a lot!! Don't ever believe everything the doctor tell you!! I was to NEVER have kids!! I have endometriosis, divide uterus, and WG. I was on treatment for 18 months when I got married and then I got pregnant with my first! 14 months after having her I got pregnant with my second. I have been blessed behind what the doctors every told me was possible!! Yes you have to be careful and listen to your body, but that's the thing you are the only one that knows your body well. Don't EVER EVER give up!!!

Thank you sooooo much !!!! This gives me more hope to kniw that someone else was told the same thing and felt the same way I do I've always wanted kids of my own and to know that you have been thro the same thing and been blessed with 2 children makes me so happy. Thank you so much for tell me this :-) it reallt means alot as I've often cried myself asleep over it as I'm sure you understand being told the same thing. I think its wonderful that you've been able to have kids and it give me hope now that maybe one day I might be able to have them too.

[mishb]

Hi Bec and welcome.

Sorry I haven't been on sooner but I had a big day at work yesterday.

Guess what - you no longer have to feel alone ............... and even better is that we are planning a WG catch up in Qld in a few months.
We have recently had a really big one in Melbourne and also in Sydney.

Bek, if you are on facebook, we have a WG/GPA group for Australians and New Zealanders. We would love for you to join there too.
If you are not on facebook, then this is the best place to be. Below is the link to the group.

Emily who is a member on here and also in our Aussie/NZ fb group, had a baby 12 months ago and he is doing wonderfully.

https://www.facebook.com/groups/516643745050360/

[Bek Stone]

Hi Bec and welcome.

Sorry I haven't been on sooner but I had a big day at work yesterday.

Guess what - you no longer have to feel alone ............... and even better is that we are planning a WG catch up in Qld in a few months.
We have recently had a really big one in Melbourne and also in Sydney.

Bek, if you are on facebook, we have a WG/GPA group for Australians and New Zealanders. We would love for you to join there too.
If you are not on facebook, then this is the best place to be. Below is the link to the group.

Emily who is a member on here and also in our Aussie/NZ fb group, had a baby 12 months ago and he is doing wonderfully.

https://www.facebook.com/groups/516643745050360/

Hi michelle

Thanks for the invite I just logged onto fb and joined. It would be great to meet others who have WG and if you do plan on coming to queensland I would definitely be interested in coming. WG being such a rare disease its hard to find people who understand and I've only been on here for afew days and already I feel like I'm among friends and hearing about someone else who has been able to have kids is just wonderful. I already feel happier just being able to talk to people who feel the same way I do and truly understand because they are going thro the same thing its so helpful really it is to know that nonody is judging you on the way you look or anything because they are going thro the same I really am already very grateful that I found this site after so long not being able to say how I really feel because my family get upset and say don't be silly theres no need to feel like that but you all aren't saying that what I'm feeling is silly its nice to not have it all bottled up anymore wnd know that I can talk about how i feel about my WG and everything that goes with it without being judged.

[mishb]

I've already added you on Bek.
All you have to do is start talking. You know us Aussie love a chat or a laugh

Both this forum and the fb group are my life line and the people with WG are just awesome people

[Bek Stone]

I've already added you on Bek.
All you have to do is start talking. You know us Aussie love a chat or a laugh

Both this forum and the fb group are my life line and the people with WG are just awesome people

Haha very true my mum always says I talk to much but a good chat can go a long way to making someones day a whole lot better :-) and I've already found that the support on here in just a few days is amazing and am really enjoying it :-)

[annekat]

Yea sorry I am on pred I forgot to mention that and with my clarinet its kinda hard to explain because you don't just blow you have to blow and bite at the same time and you use alot of your facial muscles I can play afew bars but not a full song because air and a funny kind of sensation happens with my nose its like rolling your tongue like on r's but thro your nose its hard to explain its easier to show it just makes it difficult to breath if that makes any sense at all lol

Thanks for that explanation, it makes it more clear. I guess I'd have to try playing the clarinet to see if it would happen to me. My nose, even though the septum is eroded away, feels pretty normal to me as far as breathing, nose blowing, nasal rinses, all that. It would be interesting to see inside of there.

[Bek Stone]

My ENT surgeon has taken pics all the way along as I have a cleanout once a year because even with the rinsed apparently I get a funny smell and I dont know coz I cant smell at all any more ive very paranoid about it. So he has pics of the inside of my nose from my diagnosis to now you can see all that space in there mine is alot better but its still very red raw but when I was first diagnosed it looked the little tumors all thro my sinuses but not so much now