afraid in Arizona new to chat wegeners has about destroyed me

[cherS]

I found I had Wegeners last year 3 months latter my Hubby died now Im alone and trying to deal with this disease. I am afraid

[NikkiNicole]

You have come to the right place. While we aren't doctors, there are hundreds, if not thousands, of people on here in various stages of Wegener's who can give their own advice based on what they've experienced. You'll find people who have fought back from certain death, to those who have just started to face the very tip of the Wegener's iceberg. Each and every one of us in united in our battle against Wegener's. We come here to vent, to scream, to cry, and to reach out to one another.
I am sorry to hear that you are going through such a horrific time. My heart goes out to you. Please feel free to unload your troubles, tell us your Wegener's story, someone on here is bound to have experienced something similar. (again, there are thousands!)
Welcome to our family, it's unfortunate that you have to join but we are glad to have you.

[Dirty Don]

I found I had Wegeners last year 3 months latter my Hubby died now Im alone and trying to deal with this disease. I am afraid

Hi cherS, sorry about your loss, certainly complicates things having WG also, for you. But, do not be afraid...watchful and concerned, yes...but no fear. Don't know where you are in AZ, but you have Mayo in Phx nearest for you. I go there now, I live in Surprise AZ, Mayo has a good concept of what WG demands and has kept me on my feet for 2 1/2 years now. I'm 65, active, in reasonably good shape...shut up everyone!!!!...I golf, whaddya want!? Anyway, sorry...class clown is creeping out tonite...ignore my weirdness...and with Mayo's help I have gone thru the fear, the denial, and finally the fix up phases...I'm kinda now at the full acceptance stages of WG is forever with me now. And it's OK...as long as one has good docs (WG aware/enabled/experienced), some kind of support system, and one follows the correct protocols correctly...lots of fortitude and patience cherS...best to you!

[windchime]

Welcome to the forum Cher. I'm sorry to hear that you've had such a devastating loss and been diagnosed with this disease all within such a short period of time. It's natural to feel fear when faced with what you are facing. Do you have any family or support system to help you cope with things? This is an excellent support group full of loving, sensitive people. Here you can ask any question or share information or just post your frustrations with whatever. We all understand. There is a wealth of information in the archives. If you haven't started reading some of the older posts you should. It will help you understand the disease better and give you a better perspective when reading other peoples stories. Please feel free to share more of your story, how you were diagnosed, what meds you are on and your journey here when you feel like it. We would like to know you. In the meantime hugs to you.

[Alysia]

dear Cher,
I am sorry for your loss. must be though
having WG is scary but you are not alone anymore. we are with you, so it is going to be less scary, sometimes even funny, especially when Dirty Don is around
what meds are you taking ? what are your synptoms ?
continue to write. it helps. hugs

[annekat]

Welcome, cherS! The above posts have pretty much said it all. But I'm so glad you found us and only wish it could have been sooner. This is a very hard disease to be alone with, and here, you will not be alone. We understand and are here for you. Please continue to write, say as much or as little as you want, but hopefully more.... Ask whatever, blow off steam, share interesting stories, the list goes one. Hope to keep hearing from you, and maybe you live close enough to Don for a face-to-face visit.

[renidrag]

Welcome CherS , indeed there are all realms of WG here. From the newly diagnosed to, well ,me. I am not the standard but have reached drug free remission for three and a half years. There is hope. Plus you will make a lot of new friends here that understand.
Dale

[cherS]

Thanks for all the support. Mine started with sinus problems I went to anENT and he was aware of WG and sent me to Univ of NV There I was started on prednisone. I have had a wild ride of finding any Doctors that had a clue but now I have a very caring Dr. I am now off of the pred and was taking methotrexate which did not help. Now on cyclophosphamide. Starting second month I dont feel great but can drive and do a few things around the house. I lost hearing in right ear and some loss of sight in right eye. Tried cataract surgury but did not work. Also have neuropathy and carpel in both hands. I take lyrica and it helps the pain. I cant get around much and that makes me sad so I watch alot of TV and do things on my computer. So thats my tale of woe!!

[Dirty Don]

Not woeful, sounds like many of us!!! It's the new normal as some are fond of on here...better than the last chance!!!!!! Glad you have a doc who is trying hard...but there may be consultations available if the doc is willing thru the Vasculitis Org. The drugs take about 5-6 weeks before they are effective, so be patient patient! The neuropathy, for many of us, goes away or at least recedes somewhat...I still have some in left foot, but had it in both legs and feet at first...massage helped a lot. Carpal tunnel seems to be a mistaken dx that occurs somewhat frequently when it is actually the 'roaming' pains of the WG symptom presentation. Keep at it, keep getting info, keep asking questions, and you'll get back to where you want to be. Best to you!

[windchime]

I'm also on Cyclophosphamide and it makes me feel bad also. I've been on it since Nov 30th and should be getting off it soon. Fingers are crossed here. Good luck with it and if it becomes too bad maybe they can reduce your dose or there are other meds besides the CTX and MTX. Hugs to you.