New Member: Wegener's GPA Diagnosis 2016 & Lung CA 2014

[annekat]

Welcome, Lindy. You have indeed been through a lot. I'm so glad you found us, if you have to have WG. I've been coming here since my dx in 2011 and would be lost without it. There are some good docs out there, but many of us have limited access to those with much WG experience, so get limited info from our docs and get a lot more here! You are in Ohio, I see, and the Cleveland Clinic is one of the best known places for specialists in WG, in case you didn't know. There is so much variety in individual cases of WG and how we respond to the meds we are given, that it may be quite overwhelming at first. So hang in here, and the more you read, the more you will know and understand. Ask any question, and search the archives for specific topics. Yes, the family and friends thing can be very difficult. They seem to think we will just get treated, take meds, and recover, and that will be it. And many of us "don't look sick". Some have a hard time getting that we will be working the rest of our lives to monitor and control this, that our issues may change dramatically from one day to the next, and that it can indeed be life threatening! That being said, many of us have learned to live very well with our "new normal" and continue with what we decide to do in life. One of us, Cindy, has even climbed Mt. Everest and run the Iditarod sled dog race a couple of times or more so far. That doesn't mean we are all capable of those kinds of things, or even walking around the block. Some of the best advice out there is to try to avoid stress, otherwise you will notice soon how it can increase your symptoms, also eat right, get what exercise you can, all those good things! It will make a difference. And allow yourself to rest and take naps whenever you need to, if possible. Once family members understand better, they will likely help out more around the house, etc. All the best to you, and please keep us informed about how you are doing!

[Jaha]

Hi Lindy,

Welcome to the best forum ever. This forum really is stocked full of info and really special friendly people. Somebody will always be here to answer any questions or to just vent to. You have been thru some really scary things in the last 2 yrs. This disease is very unpredictable and will throw you curve balls at times. I see you are from Ohio, to you see a Wegener's specialist in Ohio? I am from southern Ohio and see Doctors at Cleveland Clinic, they are really wonderful up there. I am wishing you all the best with your treatments. Please keep us up to date and take care of yourself.