Hi my name is Rebekah Stone or just Bek. I was diagnosed with WG in 2009. I was 18. It completely turned my life around. The last year of high school (2007) I had a syptoplasty (not quite sure if that's spelt right) and a fess as I've always had sinus problems since I was little and used to use rhinochort spary I also had a diviated septum so this was supposed to fix this but sometimes the op doesn't work and you have to have it done a second time. Before this of in the sept of 2007 I had never had headaches before ever. I wasn't a healthy child as I have scarred lumgs due to really bad asthma and bad kidney function as when I was born my bladder and tubes that attach to your kidneys where the size of an adults and instead of connecting on an angle they faced straight down and worked in the opposite direction so wjen I went to the toilet it would go back up into my bladder, it really hurt, so I had a bilateral uriteric reimplantation when I was 5. So lets just say I wasn't exactly healthy I was still determined to b like everyone else I used to play winger in soccer and was in all 3 choirs at school and played clarinet in 4 bands/orchestra. In 2008 I started studying accounting at UQ and was gettimg extremely bad headaches so my ENT surgeon when in to have the op again in the February of 2009 and thats when they took the biopsy because he said it looked like a bomb had gone off in my face. I had also transfered over to teaching at uni as thats what I really wanted to do as accounting just wasn't for me because I'm kinda a people person. Dr careless my specialist told me to give up uni but I still did 6 months and I only went to 3 of my tutorials as I was in hospital the rest of the time but I still got sixes and sevens. I'm extremely stubbon and I know I shouldve listened but I didn't. I tried methotrexate and it made me sick and did nothing to my levels then imuran and it made me even more sick and still no change then I had 7 months of cyclo and it just made me sick as well and then finally yhey tried me on a mix of myfortic tablets(dailt) and mabthera, was supposed to b 9 monthly but it has to be passed by a board in Australia and they always took months to approve it that my WG always progressed and I was in hospital. I was allowed to start back at uni UQ st lucia last year just doing one subject a semester and because I can't b a primary teacher anymore because of having no immune system and being limited in what I can actually do I'm doing what I always dreamed of doing Ancient history, classical languages (ancient greek and latin), spanish and medieval and british isle history which I absolutely love. Im now getting my mabthera 6 monthly and it is making a big difference im getting closer and closer to remission. I'm able to do alot more as im feeling alot better than before. It has been hard with pain meds as well because I'm allergic to morphine and codine so its been difficult. Also I was a size 10 at 65kg when I was first diagnosed and now im a size 24 at 129kg its very upsetting. And the other thing that really upsets me all my friends are getting married and having kids and because of the state of my kidneys I've always known I would have difficulty having kids and now because of my WG I've been told that my chances of ever having kids is extremely slim so thats really upsetting and I don't have a boyfriend because I personally wouldn't wsnt someone to take that risk because I believe everyone should have the chance to have kids even if they don't want them at that particular time in their life I now its silly but thats how I feel. Anyways thats me the email said to kinda tell my story and thats it long and complicated but Im sure most of you guys have a similar story to tell about your WG.
Oh and what really upsets me is that I can't play my clarinet anymore because its rather hard to play a woodwind instrument with air coming out ur nose because u have no sinuses lol its very frustrating
And I'm not allowed to work atm as well but I do teach a small sunday school class on sunday kids about 11-17yrs old I take the older class and sometimes I volunteer for meals on wheels when I'm well enough and it doesn't clash with uni and go to a patchwork group with my grandmother twice a month. I do alot of embroidery, cross stitch and quliting.
Wow, it sounds like you've had quite a journey. I'm glad to hear that the mabthera is working for you and that you're nearing remission. Fingers crossed that it happens soon!
It sounds like you're really active with volunteer work, which is great! I'm glad you have the opportunity to teach, in at least some capacity.
Welcome to the boards! I've found that everyone here is super helpful and friendly. I've never met anyone with Wegener's either, so it's good to know that there's a whole community of folks here that understand what you're going through.
Welcome Bek.
Judging by the relatively small population of Australia there seems to be a lot of WG patients from Australia on this forum.
I don't think WG itself should put you in a position where you can't/shouldn't have children. Some of the meds such as cyclophosphamide may cause problems. I hope you haven't ruled out children without getting a definitive reason for why you can't.
From diagnosis when I was 17 until I was about 25 I had a job where I would come in to contact with hundreds of customers a day. I was immunosuppressed virtually all the time during that job, so I wouldn't rule out being a teacher if that's the career you'd like.
Being a winger you must have been speedy and fit. I really miss playing soccer with my mates and children. I was also cycling a lot which I used to enjoy. Now I feel like I've ran a marathon after I've got dressed in the morning
As for not having a boyfriend in case he wants kids, just don't think like that. There was a good chance I couldn't have kids due to cyclo and I found someone to love. She already had 3 boys so I fell doubley lucky - I had children, but I bypassed the nappy changing and sleepless nights stage. Well perhaps not the sleepless nights - there's always something to keep you up at night worrying about your children no matter what age they are.
Plus think about all the other couples that can't have children such as those with other illnesses or gay couples. They get around it by adoption, fostering, etc.
Bek, glad to see your introductory post..... Michelle, the head Aussie Weggie (after Andrew, the Big Kahuna, of course) will no doubt find you soon and figure out a way for you to be in touch with more Weggies down under. I have no idea what part of Australia you are in without looking at a map. Which reminds me, check out our Weggie members map, link in blue at top of page; that will take you to Andrew, our Chief, who will tell you how the map works and from there you can go to the map and add your "pin" if you like, and see the distribution of members worldwide! I'm glad you have joined us.
Welcome Bek
I also had never met anyone with Wegs before finding this brilliant place
Don't you stop yourself from finding love / a partner / kids . We never know what's round the very next corner we take .
Life is a little harder for us but no less amazing just a little different
Good luck my friend : help is here 24/7 xx
Thanks everyone for your support the slim chance of having kids upsets me and it kinda has more to do with my kidneys than my WG because of carrying a child etc. But thank you all for everything you've said I really appreciate it because im a big worrier lol and have a tendency to over think alot of things and then I just upset myself if that makes sense and yea I was pretty fit I miss the way I used to look. And teaching was always my 2nd choice of what I wanted to do because theres not many jobs in the ancient history area but seeing as the dr may not let me work full time I can actually do it. :-) its nice ti hear from people who have been thro similar experiences because people say 'oh I know how you feel' but they really don't because they've never experienced anything like WG or similar illnesses its just nice to finally find people who really do understand after so long :-)
Likes: 
New member (Bek) just joined this website
Reply With Quote
. Well perhaps not the sleepless nights - there's always something to keep you up at night worrying about your children no matter what age they are.
Bookmarks