Greetings from British Columbia!

[cutehair2013]

Hello everyone,
I am so pleased to find a site that has resources and others that are struggling with the crazy and unpredictable symptoms and random things that Wegener’s gives.

I was originally diagnosed with Wegener’s 2008, the ENT didn't want to treat it as it wasn't "bad enough" so after visiting the Respirologist, Rheumatologist, Infectious Disease and cardiologist they all agreed to wait until I got "worse" in their opinions. Such a frustrating adventure this went on for two years to the point where I couldn't make a fist to pull up my bed sheets, and I couldn't make it to work any longer. I ended up have an acute lung hemorrhage...and guess what I was finially bad enough to start treatment. I think back and kinda have to laugh that I was so thankful for treatment I can't really complain about how crappy the medication made me feel. There's the silver lining :confused1:

I am now taking Imuran for maintenance three years off of Prednisone and Cyclophosphamide, they had me on Methrotrexate but I had a reaction to it. I have had so many issues since then. Shingles, skin issues, leg ulcers, and steady weight gain, rapid heart rate, partial loss of hearing, and curly hair..I used to have poker stright hair until this?? not sure :thumbsup:

I moved to a different province to be closer to family for support and having an incredible hard time finding the right specialist that understand the disease and even ones that are willing to take on all that comes with this Wegener’s.

I look forward to reading through the post's and learning more about how to maintain remission.

Thanks to everyone for sharing your experiences and helping others understand Wegener’s

[annekat]

Welcome, cutehair! I'm sorry you have WG but glad you have found us. I'm appalled at your docs waiting until you "got worse" to treat you for WG, even though they had a dx. That's even worse than my docs who never even thought to test me for WG although I had all the signs for 2.5 years. Until I got worse, that is, and for me, too, it was having WG go into my lungs.

It sounds like you are doing better, which is good, but I'm sorry you are still having some issues. I know there are others in BC and western Canada who are on the forum and can possibly refer you to a really good Wegs doc, hopefully not too far from you. It would be nice to know you were in good hands. Whatever happens, stay in touch here and write anytime with questions, stories, or rants and vents. We are here 24 hours a day, since we are a worldwide group.

[mishb]

Hi Cutehair, welcome and I'm glad you found us.

Hopefully 2014 will bring lots of new experiences - you have just gained the first one........joining our little band :thumbsup:
I'm sorry that you had the need to find us though.

Cutehair hey???!! - Really!!!! you think curly hair is cute? I have lived with it all my life, but now it is way out of control :sad:
At least before, I was able to blow dry it straight when needs be - not now, just spirals and mess.
It's always the same thing though - people with straight hair also want curly and those with curly, so long for it to be straight :flapper:

Seriously though, you really need to find a specialist that knows WG and all the quirks that go with it (sorry no perks) :unsure:
A lot of us, on here, have gone two or more years waiting for a diagnosis and therefore, made it through without any treatment, however on saying this, I think that it is a disgrace that your doctor did not start proper treatment even though they knew what you had :predrage:
All of the proper specialist know how quickly WG can get away from you and cause numerous other problems, if treatment is not commenced.

Welcome again and we look forward to hearing more from you

[mr.g]

Hello from western Washington State, welcome. I also had the same symptoms plus some others. However, at my age I would like to have had the curly hair. In fact, I would like more hair, curly or straight. Hang in there, hope is a great thing. If you ever find yourself in the Seattle area let us know and I will buy the coffee. My wife does not drink coffee but she would like to talk to other WGers. You will find this group is a great support group. Bon Chance.... Ev & Toni

[windchime]

Hey Cutehair,

Welcome to the forum and ditto what everyone else said. Take the time to research the archives as there is a wealth of information there. Feel free to vent if need be we have wide virtual shoulders and lend them if you need/want them. Glad to hear you're in a med remission. Keep us posted and I look forward to hearing from you.

[pberggren1]

First off we need at least one pic of the hair.......:cool1:

And whereabouts are you in BC? I have lots of family all over BC. Oh, and welcome to our beloved family. You will fit right in. I hope things are good for you at the moment.

[Alysia]

Hi Cute hair. cute name :smile:
I am also sick since 2008 and didn't get the right treatment for some years untill it became worse and worse.... you need to have good docs. you can have where you live.
unfortunatly to me, wg is so rare where I live, that my docs are learning about wg through me, including mistakes :(
are you in remission ? tell us more about you....
and welcome to the BEST forum on the globe. you will see. the most amazing people on earth are just here :)

[carriej22]

Welcome, from a New Brunswicker!

[cutehair2013]

Thanks everyone for such a great welcome! I am pleased that I have found everyone as it seems no one in my social circle knows much about WG and they don't understand some of the limitations we get just out of blue.

Annekat ~ I am working with the best doctors program to find local doctors that have the knowledge I need to stay safe. I have been out in BC for a year with what I think is a lack of care that I require to keep everything in remission. I can be fairly vocal! I think through this illness this has severed me well.

Michelle ~ I love curly hair too but mine is only half curly, well its wavy....I just invested in a good hair straighter Cindy ~ The thoughts of having a place to go to share my successes and my frustrations with people who understand is something I didn't think I would ever find. You guys will be hearing from me...no worries...I am vocal :w00t:

Mr. G ~ I am actually planning a trip to Portland for a little long weekend get away, I will certain see if you and your lovely wife are free for a Pepsi (i don't drink coffee either) on our way through Seattle.

Phil ~ I will figure out how to put a good hair day picture on the site...:thumbsup:

Aylsia ~ I am sorry to hear the that doctors are not familiar with WG where you are, it is so disappointing when you go into a doctor appointment and come out with less answers than when you went in. I am in remission at this point so they say, I do have a few issues still but over all I am feeling way better than a few years ago. I lose energy pretty quick, and I am having a fair amount of trouble with keeping my weight down. But I work out everyday as much as I can before I get to sore to go to work. I work in Disability Management for a Long Term Disability Insurance Company, funny I manage other's illness as well as my own, I love my work because I can so relate and I think it makes me better at my job because I can relate. I am married and thankful everyday for the support she gives me and she has never given up and she goes to as many of my doctor's appointments as she can, she has even attended living with Chronic pain program with me...I am so luckily to have such an amazing support system at my side. We don't have any kids just an old needy 17 year cat. I can be considered the crazy cat lady...lol

Carrie ~ yay a fellow Canadian.....I have never been to New Brunswick but I have family over there. Maybe one day I can make it to the east coast I get pictures a lot from family and it looks beautiful

whew...ok I am off do some more reading

[mr.g]

We look foreword to "coffee." Maybe we can meet in Olympia and get Annekat to join us? Ev

[Christina32]

Hey! Where in BC are you? I'm on Vancouver island....

[Alysia]

I am so luckily to have such an amazing support system at my side. We don't have any kids just an old needy 17 year cat. I can be considered the crazy cat lady...lol


welcome to the club. it seems that most weggies (if not all) are cats/dogs/pets lovers :love:
and I am glad you have a good partner. I must say, that because of my english :blushing: (not first language) I am a bit confused, if you are a "he" or a "she".... can I ask ? (sorry)

[Allisonquast]

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.

[Allisonquast]

Oops I meant cute hair!

[annekat]

Hey! Where in BC are you? I'm on Vancouver island.... 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.

[annekat]

We look foreword to "coffee." Maybe we can meet in Olympia and get Annekat to join us? Ev 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.

[pberggren1]

I have a sister in Vernon as well.

[Randy]

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.

[cutehair2013]

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!