Why I am grateful to have Wegener's

**chrisTIn@** · 12-23-2010, 04:21 AM

Congratulations with your appointment Mark!

Very interesting conversation on this thread.
Especially the parts about acceptance, fear, denial and s on.
We all have to deal with that, one way or another.

I very much agree with Jan W., who says that even if a ´top guy´is treating you, there still can be symtoms of WG.
I´m treated by a top guy, he says my WG is ´light´, and that I´m 'in remission'.
Still my remission is not totally symptom-free.

In my opinion, a good and allround vasculitis-specialist goes 'for the long term'.
He will balance the treatment-decisions he makes,
will look not only at syptoms but also at possible long-term-damage and base his treatment on that,
with an eye on the future.

**elephant** · 12-23-2010, 08:26 AM

Mark that is great news your going in Jan, what a wonderful Christmas gift!
Chrisitin, I am also not symptom free with WG. I too am in remission even though I myself still think I should be symptom free to be in remission. But also thankful that I am able to walk, talk, breathe and eat!

**Minneapolismark** · 12-23-2010, 08:42 AM

The problem I'm wrestling with is this: if I am in remission will I be able to work again, or is that one of those "wait and see" questions that has no common answer?

**dunkie2202** · 12-23-2010, 09:30 AM

Mark I think it is clearly a "wait and see". Many others have managed to return to work in one way or another. In my case I don't see that I will be fit to return to full time Motel cleaning at all. My GP who is also my old boss, agrees 100% and this is because of my kidney damage. Perhaps in the future I may be able to find something else ...another career, I think it all comes down to adjusting your "new life"

**Jack** · 12-23-2010, 10:22 AM

Originally Posted by Minneapolismark

The problem I'm wrestling with is this: if I am in remission will I be able to work again, or is that one of those "wait and see" questions that has no common answer?

A lot does depend on your individual case. There are many on the Forum who can not work, but many of them are still trying to get the disease under control. There are others fit enough to climb mountains. I have seen both sides myself - it took 5 years to stop having flare ups although I did work through this time with a great deal of sick leave (I was also on dialysis for 18 months before having a transplant, but still able to work). I then had 15 years of near normal life with just the odd infection or drug side effect to deal with. For the past 5 years, my health has gone down hill again and I have had to take early retirement.

**Sangye** · 12-23-2010, 11:09 AM

Definitely wait and see. It's way too early to know how you'll be.

BTW--Whooya on getting an appt with Dr Specks! Sangye will now cross you off her "Must Nag Every Hour" list.