Diagnosed, but lucky (I hope)

[Kimbangu]

I am approx. 20 miles North of Dundee, Scotland. No, I am not African I'm a Scot. I was in shock when I was diagnosed because I had never heard of the condition before. I rapidly learned that looking at WG photos on the web is not such a good idea........ I get all my WG info through this site now, never look at anything else. It keeps me feeling cheerful....! The regular contributors on here are brilliant.

During the diagnosis stage they stuck so many needles into me that every time I heard the sterile packaging being ripped open on the needle, it made me want to scream. but you get used to it.

Couple of problems I have had ( apart from the pred side effects, and I am getting PLENTY of those) are as follows;
1) people hear you have this serious disease and then when they meet you, you appear to be the picture of good health. They find this difficult to understand.
2) If you tell the people you know that you have got "Wegener's" they will always go away and look it up online, then they come back at you a couple of days later, full of deepest sympathy. You can always tell when someone has been having a sneaky google for "Wegener's".......Which isn't always helpful. I usually just say I have "vasculitis" now.

Yep keep in touch and welcome to the new reality- the new normal! - It's not so bad. BUT there's a long journey ahead and this forum helps me a lot.

[elephant]

I guess my friends don't look it up. No sympathy or empathy. I sure had some of my family members look it up. Also two of my family members joined this forum to understand the disease more. Many of my friends just don't get it.

[GARYfromBOSTON]

Kimbangu, if you look ok on the outside but have WG issues on the inside I'm sure some in our society are not very sympathetic. From some of the posts here it seems like even family and friends are not always supportive. I'm very lucky that my wife is 100% understanding and behind me. I'm kind of worried what they'll think at work after I've been out a few weeks with WG issues then come back looking better than I have in a year.

elephant, sorry to hear you are getting little empathy. We need it! You'll just have to get it from us!

Dale, I wonder how close we are. I live in Sharon (near Foxboro).

[Sangye]

Kimbangu-- I giggled at your "sneaky google" comment. So true.

Elephant-- how does your friends' lack of empathy manifest. Do they completely ignore that you're sick, do they outright question it, etc...? I'm asking because I've also encountered this from some friends (thankfully not universally) and have learned some good coping strategies in therapy. Joining this group made all the difference in the world for me. True for most of us, I'm sure!

Dale-- It's best to get started with a Wegs specialist while things are going okay. Wegs can change rapidly and you want your team in place. It's also good for them to see you when things are going alright, as that gives them a better idea of what that looks like for you. This is my not-so-cleverly disguised Nag.

[big perks]

Great to hear you are getting better, your story is so similar to mine - diagnosed last year following chronic fatigue, loss of appetite and pain in legs that let me bed ridden for over a week, the final straw being not able to walk out of my exams! I too have had 2 doses of rituximab, the breakthrough Wegener's drug, thanks to my WG doctor researching other drugs available for the treatment of WG with less side effects than cyclophosphamide.
Loved the story about google search - having been advised not to by my nurse, I couldnt resist - immeadiately regretted it though. The lack of information out there is appalling, just glad I found this forum to get some proper knowledge on this disease and its comforting to know that you are not the only one going through it.

[elephant]

Welcome Big perks so glad you got the right treatment. How are you feeling now. Are you on Prednisone?

[big perks]

Thank you elephant. I am currently doing well (fingers crossed)- I am back to university and taking each day as it comes. I am on 7.5mg of prednisolone my "maintenance dose" as my doctor refers to it, which has been reduced from 60mg last May - I dont miss counting out 12 steroids every morning!!!!
How is your Wegeners elephant? Hope you are well.

[GARYfromBOSTON]

big perks, nice to meet you. It is very comforting knowing you and others had a similar experience to me and have great outlooks! We'll have to compare notes as we go.

Where are you from?

[renidrag]

Big Perks--Alot of incrdible people, here good luck and glad you are doing well. Getting off the pred is a biggie for me.
still not able to put in an eight hour day yet but company has been great to me.

Gary: We should have coffee sometime with the wives. Mine is also supportive, had to watch her shovel snow last week end. We are in Randolph. Small world.

[elephant]

I am not in remission yet, but trying to get there. I am slowly reducing my prednisone. I have been up and down with 60mg of prednisone and here we go again down to 5 mg. I have been told it's going to be tough because my lungs and sinuses don't like it. I am doing 90% most days, and realized recently that I will never get back to 100%. That is ok. I am a fighter and keep going. thanks for asking... What are you studying at the University Big Perks?