I would love to have someone to talk to and just share some coffee or drinks together sometime. Maybe hit the beach and get in some relaxation time!
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I would love to have someone to talk to and just share some coffee or drinks together sometime. Maybe hit the beach and get in some relaxation time!
There is a map on the forum you can check. I seem to remember a weggie in the San Jose area. I just moved down to SoCal from SLO; I'm an example that the map might be out of date so it doesn't hurt to just ask like you did, either!
I am from Santa Cruz but live in Spain now. Santa Cruz is the best. I hope you find some one. I have been gone for 30 years so I won-t be much helpQuote:
Originally Posted by cerulean22
Sheesh, I wish I WAS in Santa Cruz. Great place, yes, I've been there. I am sure there are some Weggies in the Bay Area, as I've seen them on here. If there are any in Santa Cruz, I hope you can connect! Welcome to the forum!Quote:
Originally Posted by cerulean22
I know a guy in your area that is on fb.
I hope you can get in touch with someone near you. I just got back from the VF Symposium in Philly and talking to people face to face and sharing experiences was invaluable.
Hi Rebekah.Quote:
Originally Posted by rebekah
Im glad "to meet" you here.
how are you ? it is long time since you updated us...
please tell us how was the symposium ?
I'm so glad I got to "meet" you, Alysia, and everyone else on here too. Virtually can be just as good as face to face. I don't mean to be away for periods of time, I’ve just been having lots of ups and downs and been in and out of the hospital. Was there for 5 days over July 4th weekend with horrible chest pain and my resting HR has been super high (100-120s, jumping as high as the 170s just walking to the restroom) and no one seems to have an answer for me. I’m so glad I was still able to make it to Philly. It was a great experience talking with doctors and meeting other Weggies. I’ll make a post later with info and my experience; if you don’t see it in the next day or so, someone please message me. I’m still on 50mg of prednisone and it’s made me super forgetful, even if I have things written on post-its or reminders in my phone.
Hi Rebekah.
Im sorry to hear about your being in the hospital.
I hope things are getting better for you. I remember you wrote that you take this year for rest and recovery, so it must happen soon.
take care of yourself and "return" here soon :)
Rebekah, I'm feeling so much better after a couple of years of treatment.... I hope it kicks in for you, too, and you can get out of this cycle of feeling bad and having bad symptoms. If you were able to go to Philly, that is a good sign!
So happy to hear you're doing better, Anne. I agree, it's a good sign I made it up there... it's just chest pain, I've been through worse and I wasn't going to let that keep me from going.
Oh, and I love your new picture. So pretty! :)
The map Phil mentioned... Is here WegMap I will be near Santa Cruz this fall. My son is in Livermore and we'll be down there visiting.
I have a great cousin in Santa Cruz, let me know if you would like to meet her, the rest of my cousins live in the Bay Area or MonrtereyQuote:
Originally Posted by Barbara N
My aunt is here in Sacramento and just recently "presumptively" diagnosed. She just started her Methotrexate, Bactrin, Prednazone, etc. We are looking for people she can connect with, maybe a trip to the beach is in order! - Kristina
I'm curious where your aunt gets treated. I went to UC Davis and have explored the med school teaching hospital website to see what sort of vasculitis treatment is available. They have a Vascular Clinic, which is different than a vasculitis clinic, but does say that they are experienced in treating all forms of vasculitis, though they only mention the 3 most common ones and not WG. Then, their rheumatology clinic seems to be located within the Internal Medicine department, and autoimmune diseases are mentioned in addition to allergies and such. So I'm just wondering where does one in Sacramento or Davis go for WG treatment, short of going to the Bay Area, where there are top specialists. I no longer live there, so am just curious.Quote:
Originally Posted by msmidtown