Greetings from British Columbia!

**cutehair2013** · 01-01-2014, 10:40 AM

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

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

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** · 01-01-2014, 02:19 PM

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** · 01-01-2014, 02:40 PM

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

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

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

Seriously though, you really need to find a specialist that knows WG and all the quirks that go with it (sorry no perks)

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

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** · 01-01-2014, 04:39 PM

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** · 01-01-2014, 05:00 PM

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** · 01-01-2014, 05:14 PM

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

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** · 01-02-2014, 05:33 AM

Hi Cute hair. cute name

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** · 01-03-2014, 04:09 PM

Welcome, from a New Brunswicker!

**cutehair2013** · 01-04-2014, 11:54 AM

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

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...

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