How does your Wegener's Affect your Family?

[Lightwarrior]

I think it'd be a good thread.

I agree, its all part of the life circle. Talking about death may help to reduce the fear factor. With our without Wegeners we will all die, and we all have people in our lives who will die. I think this forum is stacked with natural healers each with our own strengths. Some of us have medical backgrounds, that's not what I mean by natural healer, everyone reaches out with their own unique knowledge to keep the rest of us going. I guess I haven't run accross someone on this forum who is not who I consider a natural healer.

[elephant]

Death is part of the journey that is going to eventually going to happen. So I am not afraid to discuss it either. We all have been through some really rough hellish times, and it is natural to fear it but at the same time if it happens it happens.

[Jack]

New thread started here - http://www.wegeners-granulomatosis.c...hts-dying.html

[pberggren1]

Good idea Jack about the new thread. I have just read the first few posts - much is what I expected.

[QBAW]

Hi, I am new to all this but not because I have Wegeners! My niece is now 19 and was diagnosed when she was 15 after having been ill for sometime. She is in remission and is leading a normal life for a 19 year old. We want to know how we can help as a family, she tells us the stuff we need to know- like that she is still in remission but when we ask about other things that she wants to do and if its been okayed by the doctor it just comes across to her that we are interfering. She is a typical 19 yr old who feels that anyone over the age of 25 is old and because she was diagnosed so young she feels she has missed out on a lot of things and is trying to make up! She has been talking about tattoos and body piercings as some of her friends have them and obviously she goes out at the weekends, sometimes going to her work the next day with very little sleep and also drinks most of the nights that she is out. She seems to think she knows what she can and cant do, but cannot answer some of the basic questions you have addressed in the newbies sections. Her and her mother tend to bury their heads when it comes to the not so pleasant realities of the illness.And whilst we understand that no one wants to accept they have an illness such as wegeners but we also want to make sure she has all the info so that she can make more informed decisions for her own health. Is there any advice or info you can give me?

[pberggren1]

It would be nice if she could join the forum here, but if she is leading a relatively normal life with work and play she probably doesn't feel like she needs the answers or support of a forum like this. Unfortunately she may have to learn the hard way if she flares again, but hopefully she will mature and realize her lifestyle has to change.

Do you know what her original onset symptoms were and what damgae was done?

[drz]

Hi, I am new to all this but not because I have Wegeners! My niece is now 19 and was diagnosed when she was 15 after having been ill for sometime. She is in remission and is leading a normal life for a 19 year old. We want to know how we can help as a family, she tells us the stuff we need to know- like that she is still in remission but when we ask about other things that she wants to do and if its been okayed by the doctor it just comes across to her that we are interfering. She is a typical 19 yr old who feels that anyone over the age of 25 is old and because she was diagnosed so young she feels she has missed out on a lot of things and is trying to make up! She has been talking about tattoos and body piercings as some of her friends have them and obviously she goes out at the weekends, sometimes going to her work the next day with very little sleep and also drinks most of the nights that she is out. She seems to think she knows what she can and cant do, but cannot answer some of the basic questions you have addressed in the newbies sections. Her and her mother tend to bury their heads when it comes to the not so pleasant realities of the illness.And whilst we understand that no one wants to accept they have an illness such as wegeners but we also want to make sure she has all the info so that she can make more informed decisions for her own health. Is there any advice or info you can give me?

Is she under care of a doctor with experience in treating Wegener's disease? Can you express your concerns to that doctor? If she feels happy with her current life, she doesn't sound likely to listen to any helpful advice regardless of how well intended.

[Palmyra]

Great topic Jack, thank you for bringing it to our attention.

I am a 'family member' here because my daughter (now 25 yrs,) has been chronically ill since the age of 14. It changes your life as a parent. Many studies have been done regarding the impact of a child with cancer and how it affects the entire family...parents, other siblings, and more distant relatives. One's entire focus goes to the infirm child, often at the expense of other family members. Simply put, my experience has been that everyone adjusts with time. Things were heartbreakingly difficult at first (I can so relate to QBAW's post....these sick kids just want to be 'normal' no matter how squewed their perception of 'normal' is...they just want to be free and fit in).

To QBAW I would advise...set the same limits you would on any 19 year old...be consistant, and consistantly supportive. She is special and unique, just like everyone else (ha!) Her brain doesn't really mature until she edges toward 24-25.

To much relief, with time and age also comes maturity. That said, I am still here because of the financial/emotional dependence this disease has created.

[aewaustin]

QBAW I was diagnosed with Weg's when I was about to turn 21, and not dwelling on the disease is what got me through it. I am sure your niece just wants to be "normal" and put it behind her. As long as she is getting regular check-up's I would just let her live her life. Thankfully she is in remission. When I went into remission in 1994 I stayed that way until 2003 and I never thought of Weg's, it was nice. There is a chance that she will have to deal with Weg's again, so while she is in remission just let her enjoy it without thinking of the disease...

[vincelv]

i think my family doesnt understand,,and since i dont make it a big thing i think they dont take it as serious...like they have called me germaphobe..but if they were in my position they would be scared to get sick too..