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View Full Version : I found a support group!



LisaT
05-15-2014, 11:44 PM
Through the Vasculitis Foundation I've gotten in touch with two women who run a support group in British Columbia, Canada! There are 18 people and of course, my first question will be whether they know of and recommend my rheumatologist and ENT and who I should see for a second opinion and treatment options. I forgot to ask if they're okay with me posting their contact information. I'm sure they will be but I will check with them and then post it. One of them is my age and lives not too far from me! And has offered to meet with me in person. I'm so happy and relieved to have found them! And yet, it made me cry. Very emotional these days. :crying:

Alysia
05-16-2014, 12:32 AM
now that you have your group, and that you have us, you are more free to cry :hug1:
maybe sometimes the tears are just waiting untill one is less lonely as before.... :unsure:

Barry Forshaw
05-16-2014, 12:53 AM
That's great news! Support and understanding are sometimes undervalued when dealing with a disease like this. Let us know how you get on.

Pete
05-16-2014, 02:30 AM
Looking forward to attending the West Central Ohio Chapter Vasculitis Foundation Support Group on Wednesday. Hope to see some of the Ohio members there as well. Will be my first time attending a formal support group.

pberggren1
05-16-2014, 04:29 AM
There are a few from this forum that live in your area Lisa.

windchime
05-16-2014, 04:31 AM
Great news Lisa. The support you need is there when you need it!!

annekat
05-16-2014, 12:17 PM
That's great, Lisa! Meeting and getting support from other Weggies near one's home is hard to beat. We truly are a bunch of kindred spirits in many ways. And I hope, hope, hope, that you can get hooked up with some good docs and can get the diagnosis and treatment you need, soon!

LisaT
05-16-2014, 12:26 PM
Thank you! Crying again. Sheesh! I'm going to end up just a big puddle. Looking forward to some visits from family coming up, which should also help a lot. My hubby's sister this weekend, then my mom for a week (she will come with me to results of a breast biopsy (haven't even mentioned that issue yet), and the gated chest Ct, all in the same morning! She's been planning to come visit, and she and my dad just returned to calgary from their winter in Scottsdale. When I found out both of those results were scheduled for the same day I left her a vm saying she needed to be here for June 2nd. I've done enough of this on my own, now I want my mommy! Waaaaaahhhh! Oh, and my sis from Seattle will come either in between SIL and mom, or after mom. We always have fun together. She has a lot of similar symptoms to my earlier ones, and chronic sinus infections and ear pain... I'm worried about her and told her to get her doc to check her bloodwork for inflammatory markers and ANCA. But that's another issue.

LisaT
05-16-2014, 12:27 PM
That's great, Lisa! Meeting and getting support from other Weggies near one's home is hard to beat. We truly are a bunch of kindred spirits in many ways. And I hope, hope, hope, that you can get hooked up with some good docs and can get the diagnosis and treatment you need, soon!

Now THAT was the response I was looking for at home this morning!

Geoff
05-20-2014, 04:45 AM
Loving this thread as itz close to my heart. Meeting fellow Weggies has been a life affirming moment in my life.

annekat
05-20-2014, 06:25 AM
I have just gotten a PM from a new forum member who actually lives in my town. More later on that, as we progress in our communications. Very exciting!

LisaT
03-20-2015, 09:58 AM
Hi all, I've been MIA here for too long and just popped in to tell y'all something and can't believe how much I've missed. I will try to get back here more often! I'm headed to a Lower Mainland (British Columbia, Canada) support group dinner In a couple of hours! And I'll be meeting Christina, who has come over from Victoria (on Vancouver Island) with her hubby. Hoping to also see another mom from our school (can't believe another Weggie in our tiny little school) who was diagnosed this past year and been through a very rough ride. I will try to get a couple of pics and let you all know how it went. There will be a guest speaker who is a new vasculitis specialist starting a practice in town. She's speaking about maintenance therapy and a new trial. I'll post whatever I learn. Excited to see some real in-the-flesh weggies again! (And have kid-free dinner cleaned up by restaurant staff.. That's always high on my list of things I enjoy. :wink1:) I hope everyone is feeling as well as possible and I will be back soon!

Debbie C
03-20-2015, 10:53 AM
Hope you have a good night and enjoy being waited on !

annekat
03-20-2015, 02:24 PM
That's awesome, Lisa! Is this right in your town? I wish something like that would happen here, including the new vasculitis specialist starting up a practice. Can't wait to hear all about it.

BookNut
03-20-2015, 02:31 PM
Very excited for you!!!

LisaT
03-21-2015, 02:23 AM
That's awesome, Lisa! Is this right in your town? I wish something like that would happen here, including the new vasculitis specialist starting up a practice. Can't wait to hear all about it.

Not right in Ladner but a 45-minute drive from me. The presentation and dinner were great and it was very nice meeting Christina and her hubby Barry. I have a couple of very poorly-lit pics that I will post when I have more time later. (Kids home on spring break). The new doc will be doing a trial of orencia (which is an RA drug) for treating people like me! (Limited or simmering disease activity, no major organ- or life-threatening involvement but no remission), and she is starting a vasculitis clinic at the Arthritis Centre in Vancouver. Very exciting news! She will send a copy of her presentation and I will post it here under an appropriate thread when I receive it. I thought I recognized her and it turns out she was helping at my rheumy's office as a resident/student when I came in with my subglottic stenosis and lots of tears and anxiety after injections of steroids into my vocal cords made my throat close up to a pinhole-sized airway.. She's the one who suggested imuran which has thus far worked. (At the end of the evening, when we were taking the pics of me, Christina and the leader of the support group, I asked her husband to try with his phone because mine doesn't have a flash, he pulled out his phone and it was in a BATMAN case! Hi, Phil! Thanks for stopping by our Weggie group dinner, as if we could ever forget you... :love:) So fitting. More later!

Alysia
03-21-2015, 03:52 AM
I asked her husband to try with his phone because mine doesn't have a flash, he pulled out his phone and it was in a BATMAN case! Hi, Phil! Thanks for stopping by our Weggie group dinner, as if we could ever forget you... :love:) So fitting. More later!

Thank you !

Susan55
08-18-2017, 10:09 PM
Hi Lisa
I am new to the group just as of now. I am waiting for more testing to confirm GPA, but told I most likely do have it. I live in British Columbia, Canada also :) Not sure what area you are in. I live in Surrey BC..if your close to me please do let me know.