New Weggie in BC

[Christina32]

Hello! I was diagnosed with Wegeners 3 weeks ago. It has been alot to take in but I'm feeling positive. It's been comforting reading other peoples stories/experiences as none of us had heard of 'wegeners' before. This is the first forum I have joined and am looking forward to sharing information/ feelings with others. I'm 32, a wife and mom of 2 boys. We live on Vancouver island. I look forward to 'chatting' with other people affected by this disease.......

[Dirty Don]

Welcome to the best and most informative of the forums...that being said, how much do you know of WG, the drugs & protocols, the cycles & stages, etc.? You will/should learn all that and more on here, and thru your experiences. Hope you have access to WG experienced docs, a supportive family/friends network, and, most of all, a very patient attitude! What level have you been dx at? Ask any & all questions, share freely what you know/learn...this is a great group! Well, most us...I'm kind of a pain sometimes! LOL!

[pberggren1]

Welcome Christina. Please feel free to share your story with us. We are like one big family here.

My previous family doctor moved to Tofino in 2010. My grandparents used to have property on Gabrioloa.

[pberggren1]

I think Germaine from the Forum here is from Nanaimo.

[Christina32]

Thank you Don and Phil! Although we're still taking alot of information in, once diagnosed, the research was on. A team of doctors joined me immediately and i'm feeling confident with their treatment plan. I was lucky enough to have a 'physical' presentation in my mouth/sinuses. I was in a downward spiral in hospital for 2 weeks with a rampant infection that blew through my mouth/ nose/ears. I lost all my hearing/ speech. They did 2 surgeries and tried everything to stop it. Nothing worked..... Ultimately they had to find it, and they did. I had one cyclophosphamide treatment immediately among others and spent a couple more weeks in a different hospital. Within a week of diagnosis, I gained a little hearing back and can somewhat speak. ( getting better ). I had Rotuximab last week and will get my second dose tomorrow. I'm blessed to have a strong support system and hope to find a place here with others going through similar or have gone through this. We can't change it so !! Don, they never told me a level but I will ask. Maybe it'll be determined next week as I just got out of the hospital and have multiple tests/checkups next week? I'm still learning about the treatment and lengths. ( I've researched cyclophosphamide, Rotuximab and prednisone) experience for others is always of value. Phil, nice, I put where I was from in case there was someone close to me! Gabriola and tofino are both beautiful places ! ( I should go more often haha) are you out near the westcoast?

[pberggren1]

No, I am in Saskatchewan.

[chrisTIn@]

Hello! I was diagnosed with Wegeners 3 weeks ago.

Well, three weeks is just a short while ago.
There used to be an item here with the title 'What the newly diagnosed need to know', but I can't find it right now.
Maybe that's because the site is in a bit of a 'reorganisation'-mode.
It has a lot of information though, and I'm sure you will find your way.

Greetings from what I believe is called a namesake.

Christine.

[mishb]

Hi Christina,
I am so glad you found us.......but so sorry that you had the need to

As everyone will tell you, and you will soon find out for yourself, that this is the best place to come........not only for WG advice, but for a bit of light humour, some cooking/food advice, a place for ranting and a place for general chit chat.
You might find a thread on washing machines or you could find a thread on owl or eagle watching.......everything and anything goes.

I hope things start to improve for you and I hope you can join in on all of the fun we have.

Take care

[Jaha]

Welcome Christina, I'm glad you joined us. It sounds like you have been thru the ringer, but are getting great care and tx for your wegs. Keep your chin up and continue to heal. Best of luck to you with your next tx.

[HopeinTN]

Glad you are getting treatment and have found this site! You said it...the key is a positive attitude. It is what it is and all we can do is look forward to good days. And on the bad ones, get on this site and vent. It helps! But stay POSITIVE! Yes, there are days when it will be hard, but keep on keeping on!

Take care!