Hey Debra! I've been med free since December. No maintenance meds at this point and it feels great. I know flares are common for us, so it has been kind of a source of anxiety for me. I never had a flare when I was on meds. I'm hoping I'll follow a similar course now that I'm off of them. At the very least, I know that it'll never get as bad as it was. I've been living with this for 7 years now, I know what to look for. I know to call my doc immediately if anything even remotely resembling WG starts to pop up.
Hi Anne, thanks for the welcome. I hope that some of my experiences are able to maybe help someone out there. I'm looking forward to learning new things from all of you here! It does feel good to connect with other people. The only other WG "survivor" that I've kept in contact with is my Italian friend Andy. We're around the same age and were diagnosed at around the same time. We kind of virtually went through our treatment together, and I wouldn't have kept my sanity without him. Well "sanity" maybe isn't the right word. Who can keep sane on steroids, right? But I'll try to badger him into popping over here when we Skype next, he's absolutely amazing. I know he wouldn't mind me plugging him, but he actually composed a song for the VF to help raise awareness. All the proceeds go to the Vasculitis Foundation for research! Andrea Pittini ? Life, Vasculitis Awareness Song
And aww, thank you for the welcome Cindy! Don't get me wrong, when I was first diagnosed I sat around and felt sorry for myself for a good bit of time. I think it's a natural reaction to finding out that you've been sentenced with this disease for life. I honestly couldn't tell you how it happened, but eventually my thinking shifted and I decided to treat this as a positive thing. Something that will make me strong, compassionate, and driven to live my life whatever way makes me the happiest. I hope that every patient with WG is able to find that someday.
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