my sister....

[Sangye]

Lila, I really think the only thing you can do is to step back and let her deal with the consequences of her actions. She won't take the pred, she won't take the xanax, she won't do what's necessary to get to a specialist, she won't talk to other Weggies.... She's having a temper tantrum!

If she's not participating in her care, no amount of your love will keep her from harming herself. As long as you're carrying the load, she knows she doesn't have to and she's free to act like a child. This is a co-dependent pattern. If she knows it's up to her, she'll suddenly take it seriously and find all kinds of strength to do it. She isn't as helpless as she'd like you to think!

[Lila]

Well said Sangye!
The thing is...she doesn't WANT me to make phone calls, and do things for her. She wants to do everything herself. But, by leaving it up to her, it doesn't get done right, or maybe NOT AT ALL! That's why she is in the shape she is. Never wants to 'bother' the docs, doesn't take the meds properly. I just tried to tell her if she goes back on the 10mg Pred and takes the Xanax it will even itself out. She says she will wait to see what JHU says. I don't let her bother me as much as she used to.....I hope you don't think she's a bully or acts like she wants attention. It's just the opposite. She wants no one to pity her and she has been 'listening' to what I say lately, she just doesn't take action. I told her she's not supposed to lift heavy things cause' of the Trache. I wanted to go to the store with her so that I could lift the case of water, but no! She did it herself! It's those things that really urk me too!

[Jack]

When it comes down to it, no matter how much you care, you can't live her life for her. I think you have done pretty much all that could be expected of you and a lot more beside! It's probably time now to take a step back and give yourself a break. No one would expect any more from you.

[pberggren1]

Jolanta - I wish you had a Wegs specialist too. It's not fair. One would think with such a large urban area of Vancouver that a Wegs specialist would be there.

Sangye - We need you! Don't give up! And yes it does matter if other people don't get it! My parents and docs get it and a couple of friends but that is it. I do find most people are fairly compassionate though.

Lila - It must be horribly frustrating dealing with your sister. I kinda know what it is like - I have a brother that is addicted to drugs and alcohol.

[JanW]

I agree with all of the others, Lila -- you are already doing so much for her, being here and doing all of the research. Maybe the way that she is acting is her way of being in denial (although I can't really understand being in denial with a trache and with her fingers and toes curling as you said in an earlier post). Every day that she looks in the mirror should take her out of her denial. Maybe she doesn't really want to name her disease, or she doesn't even think she really has it. And stepping down your own steroids is just wrong, I've been on doses similar to what your sister has for my supposed asthma and even then knew that it was important to take according to directions. For what it's worth, it is apparently possible to start medication and do surgery for subglottic stenosis concurrently -- at least that is what will be happening in my case. However, I haven't reviewed the blood work and won't know what meds I will be started on until I meet with the rheumy on Wednesday.

And the idea that a ENT should be dx Wegeners and or in fact be treating in medically is nuts! My rheumy and my ENT stressed that several times. In fact, my ENT, a WG specialist, stressed that he didn't want us leaving the office saying that he said that I had WG. He said that was the rheumy's call.

[elephant]

Sangye- Funny thing is I envy the healthy people around me ( my friends and family) except a couple of sisters. I will never be 100%. I have so many meds just to keep me going. I am hoping you will get there soon. You will in time. You have been a great, helping everyone out and being there for people. You will go back to work some day.
Lila- You need to take care of yourself. You can make yourself sick too, by stressing yourself out. You are a great sister.
Jolanta- I think will all envy someone...I have another envy, that I have to drive 10 hours to get to a WG specialist!

[jola57]

OK. elephant I don't envy your 10 hour drive.

[Sangye]

Jan--my Wegs ENT at JHU has said the same thing. He always emphasizes that he can't make the call about meds or how we proceed in general. He says "I just do what Dr Seo (Wegs rheumy) tells me to do." All my Wegs docs are like that-- no egos, just concede that the rheumy is the only one skilled to make the decisions.

Elephant-- I TOTALLY envy healthy people around me! I work on it, as it's counter to the vows I've taken. But it's a reality that must be dealt with. No use repressing or denying it.

[pberggren1]

My ENT is the same way. He always asks me what to do or what I think should be done - I know he values my opinion being I've had WG for about 7 years and he knows that I am on this site talking to you guys. He then asks if I have been in contact with the Rheumy and what she had to say.

[onatreetop]

Wow drop off the face of the earth a few days and I miss all this>>>>>>>>>>>>>>>... OKay in Kim's defense sort of, she is abrubt and short and even rude but also seemed almost like she was truely in pain. You know the look we have all seen it in the mirror. She was wearing it. This other person she is training I am guessing isnt working out so well and said she maybe contacking me in the future or maybe not.......................... Hum........ She was also really pissed that I made my appointment through JHUs service??? They had me as a paying person but I have insurance and the referal and copay and everything. She was like dont use them anymore they always mess things up. So I am still waiting to hear but saw the local ENT friday and he said the sinus look good but I ahave a large spur that touches the other side that needs to go and will improve my breathing. He is going to do the biopsy of the tubes? He said that WG shows there first then sinus. So I let him schedule that for the 9th of Feb until I hear from Dr. at JHU with his recommendations.
LILA, you can email kim instead of calling. That way your not calling either!!!!