some more questions

[delorisdoe]

1. For those of you without kidney involvment...do you feel as though it is just a matter of time. I don't know if I worded that correctly but I always feel as though some time soon my kidneys are going to be affected. It nags at me. My doctor said I had a very difficult case to put into remmision and it was all in my lungs so I hOpe not.

2.this comes from an earlier post where someone said they don't like to say"my wegners". Neither do. More importantly I cringe at the term weggies. Am I the only one? I mean truly hate that word and what it implies. I am many things, a wife, a mother, sister, daughter, employee, boss and even a cranky you know what. Call me any of the above but please do not call me a weggie

Leigh

[Psyborg]

I do worry it will happen eventually. That said if you are maintaining under treatment it should not ever occur(as I understand it)

Weggies does not really bug me. I don't think labels need to define us.

[marta]

I had very minimal kidney involvement (almost insignificant compared to the other stuff going on at diagnosis) and I very rarely think about my kidneys. If I haven't had enough fluids and my urine comes out concentrated I just remember that I need to take care of them and hydrate but other than that I don't think about it because as Bob said, if you're getting proper treatment it shouldn't go there.

As for the term Weggies, this is an example of how we're all different (both in disease manifestation, treatment response and how our brains work). When I heard the term Weggie, I fully embraced it because I really dislike the term "Wegener's Granulomatosis Patient" - hate it, and aside from being a mother, a wife, a sister, a daughter a hard worker, a loving friend, I am unfortunately also a Wegener's patient. Somehow the term Weggie makes it feel more beatable, easier to take on and overcome... which I fully intend on doing and living a realtively normal life. Being a wegener's patient on the other hand sounds like a much harder job to do along with all the other titles/jobs I have in my wonderful life. So in my case you can call me all of the above including a Weggie.

[Chris G]

I dont' "currently" have kidney involvement. That's what I find myself saying. Because I don't know whether I will or not. Is it inevitable? I don't know. Leigh - I think you were recently diagnosed too......is that correct? What meds are you on? and what are your main symptoms? I'm currently taking 25mg mtx and 17.5 pred, plus the usual suppliments. This treatment is designed to induce remission, base on the fact that I dont have kidney involvement. HOWEVER, it's not working, and they're telling me to increase to 30mg, in an effort to avoid the heavy hitters, I guess. I'm getting frustrated, discouraged, and a little scared. And yes, I'm considering asking for an appt at the Cleveland Clinic (more on that later - because I have questions from the "elders" on this site about that).

Hearing the word "weggie" doesn't bother me, but I wouldn't call my self a weggie (at least I haven't yet). The term I do use when talking about it is "THE disease".

[Chris G]

Marta- you seem to have a great outlook, and it seems like you've been through a lot. I hope I can get there too.

[delorisdoe]

I was diagnosed 10 years ago. I supose me hating the term weggie makes sense for my personality. I just thought maybe I was not the only one. I suppose I may need Help with my mental issues. Lol

[Hammy8241]

Q1. Not concerned with anything I can't control, rather concentrate on what i can achieve. Not 'head in sand' but damn if I 'm going to worry about what might happen.

Q2. Can't pronounce it, can't spell it, so just use WG. In all honesty, I could not care less what its called... it just stinks!

[pberggren1]

I had very little kidney involvement in the begining and basically none since. I don't worry about future involvement. I do know that if Wegs presents with lung or sinus stuff without kidney involvement it is usually harder to treat and get into remission.

[NicShaf]

I don't worry about future kidney involvement. I just focus on getting Wegs into remission with the symptoms I have now. Because I'm currently in the middle of treatment and I have labs done weekly, so the thought of Wegs going to my kidney’s just doesn't cross my mind too often.

I like the term Weggie. I agree with Marta, it makes it sound less insurmountable than "Wegener's Patient". It almost gives Wegs a light hearted side, and for me it makes it easier to deal with. I don't like using words like "disease" or "chronic illness". To me, these sound so serious...and I realize that WG is serious, but I would rather have a cute little name for my "thing" to make it sound less scary than it is. But I understand where you're coming from, everyone is different.

[aewaustin]

I had my first go round with Weg's in 1992, and dealt with it through to 1994 and then was blessed with years of remission. I am very proud to have dealt with such a serious disease and it is something that had definitely changed my life in a positive way so none of the terms bother me. I am very proud of the fact that I went through Wegeners's/chemo during my last two years of college and kept it together. So I identify with Wegners or whatever, and it is part of me that makes me special and one really tough cookie But I never would say I am a Wegeners patient, I just am someone that had this weird disease, it is not me though, if that makes sense...

Sucks it is back flaring now, but I think that there will be a time that I can look back on this time and will be proud to have kicked it's ass again.

So blessed to have this forum... Thanks guys

Anna