Hey! Where in BC are you? I'm on Vancouver island....
Hey! Where in BC are you? I'm on Vancouver island....
Alysia
dx 2008
Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
"You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.
Hello and welcome curly hair! We are in alberta but spend lots of time in bc visiting family. Sisters in vernon and the island. My husband and I are fairly new to the site and new to Wegs. He was diagnosed in June of last year. Happy new year to all!
He is in the frustrating stage wondering whether what he is feeling is the Wegs or pred withdrawl. It's awful! He was diagnosed early and like others cannot believe your docs wanted to watchful wait.
Do you have any side effects from the imuran? He will be switched to that once we return from Hawaii.
Glad you found the site. I have some experience with other diseases and assisting those who are ill but this disease is so hard to figure out!
Allison.
- You can judge the character of a person by how they treat those who can do nothing for them.
Oops I meant cute hair!
- You can judge the character of a person by how they treat those who can do nothing for them.
I think there are others in BC, too. I know there is Jolanta, whose user name I think is Jola56 or something like that. You all can look on the Weggie Map, link at top of page, to see who has added themselves there, and add yourself if you haven't. You can also check the member directory for specific usernames and where they are from. If anyone is still looking for good docs in BC, this would be one place to start.
Anne, dx'ed April 2011
Hi, Mr.g! I am sorry that I have such a busy schedule, or else am too exhausted to easily arrange a spur of the moment meeting! But it is not impossible! I have one idea.... between now and the end of March, I am scheduled to be at the Olympia Farmers Market on Saturdays selling my pottery. That starts next Sat. the 11th. Starting in April, I'll be there most weekends and possibly on Thurs. and Fri. sometimes. So, you know where to find me on Saturdays if you happen to be passing through, and the Market is a great place to visit, at the far north end of Capitol Way, not hard to find. The hours are 10-3 on the days we are open, which are Th-Sun. most of the year but fewer days in some seasons. PM me if you want more information! In any case, I hope you at least get to meet Cute Hair, and I'd love to meet you someday, too. BTW, most days at the Market, business is moderate enough that there is still time to visit, and I'd let you buy me a cup of coffee.
Last edited by annekat; 01-05-2014 at 08:02 AM.
Anne, dx'ed April 2011
I have a sister in Vernon as well.
Phil Berggren, dx 2003
I am also amazed that any doctor would say "wait for it to get worse" with something as serious as Wegner's. I was diagnosed in Burnaby in 2008, they had a treatment plan outlined in less than a week. The problem was, it didn't work, but they did realize that they were dealing with something very serious and tried. Have you found a doctor yet? My Rhuematologist is David Collins at VGH and UBC. I think he is very good. He seems to be quite knowledgeable about Wegner's. Vancouver is kind of a long way to travel though. I would think there should be someone in Kelowna or Kamloops who is familiar with vasculitis. I'll see what I can find out.
yikes...I have been off the site for a while and just looking back through this post and see all these great comments that I never knew were there! So great to find today....happy Wednesday!
I am frustrated to report that the specialist's here in BC are not great...while the ones I have been unlucky enough to see. None of them have requested chest x-rays...breathing tests...I begged for monthly blood work to be done. Then last week I go see my Rheumatologist who has says to me "call me if your joint pain gets worse other wise no need for regular follow ups" Seriously a 5min or less appointment and no need to see me until I get worse yet again, then to top it off I got a parking ticket....well that's another melt down...lol
I called my lung specialist and she is away for the next three months...perfect! so I go see my family doctor who states he will not treat anything that is WG related as he has no experience in this area. After sitting my car not sure if I was laughing or crying....but I ended up calling my lung specialist in Alberta....its only a 12 hours drive I think I will have better luck! She was great and talked me down from my melt down and is going to try to help me from there. crazy crazy Next week it's back to doctor shopping!!!!
Randy....thank you for the name of your Rheumatologist, I will see if my family doctor can refer me to see him instead, I am often in Vancouver for work so its works out well.
Christina ~ I live out in Abbotsford all of my family is here and my two little nephews they are the main reason we moved back from Calgary. I love the Island...so peaceful and the slower pace is so nice. Over the winter time I was over there Mon - Wed for work every week..loved it!
Alysia ~ I am a she and married to a she, it has been interesting with the medical system, as in Canada same sex couples have just as many legal rights as all other married couples, but in Calgary we had issues with medical staff that were resistant to allowing her access to my medical updates and at the hospitals. One hospital refused to list her as my "spouse" and listed her as a "friend".
Allison ~ I have been on Imuran for just over 3 years....when I started it the main issue was upset tummy, I felt like I was going to throw up all the time. I changed to taking it at night right before bed and hope I could sleep off the upset tummy feeling. It took about 6 months before I started to feel "ok" taking it, now I still take it at night and I find I don't struggle with the upset tummy anymore.
I will pay more attention the feeds...now that I figured out where to see the theads on the postings.
Thanks everyone!
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