How does your Wegener's Affect your Family?

**Jack** · 12-30-2009, 01:52 AM

Thought I would raise this one as it has come up in another thread and I think it is a subject we can neglect given all the other problems we have to take on board.

In my own case, I can no longer do much around the house and most of the physical work load falls on my wife. We live some way from our families, so can't look there for help. However, the aspect I'm more concerned about is mental strain which I'm sure is affecting my wife and two daughters. They see my condition deteriorating as the years pass and frankly, they're scared!

Doug · 12-30-2009, 05:15 AM

Initially, it meant my elderly parents, for whom I was the caregiver in many respects, ended up being my caregivers. Fortunately, I recovered sufficiently to resume these tasks. In three years, however, the extra tasks wore me down to the point my immune system was seriously compromised and I had shingles. My boss called my siblings at that time, discussed my situation, placed my mother in the care center (my father had gone in earlier), and watched me closely until I recovered from the after effects of overwork and shingles.

My situation is similar to what others write about, and my experience with a compromised immune system and overwork is one reason I harp on about weggies recognizing their limitations, weggie families recognizing when their weggie is overdoing it (and stopping them!), and weggies learning how to say "no" to things and situations that are, frankly, more than they are up to.

**Sangye** · 12-30-2009, 10:47 AM

I hope you'll keep harping on that, Doug. Experience is valuable, and I can't do all the nagging in the group!

**elephant** · 12-30-2009, 10:53 AM

I can harp and harp... Taking care of two small kids and the long list of stuff you have to do. I just take a nap everyday... and clean parts of the house ( break it up during the week). My family is visiting us right now. They went to see the movie Avartar with my husband and son. I stayed home with my 4 year old, and I'm ok with that. I like staying home more and getting out once in a while. Last night I had my sister look at the WG site's so she could see the stories the we all been thru. Most of my family don't have a clue what this is all about and they really don't want to know. I am ok with that, I just know that I have my limits and that is that. Amen....

**coffeelover** · 12-30-2009, 11:03 AM

because we don't always look sick there is the misconception that we are "healed", so this year I sent out my annual Christmas letter with a note about what Wegeners is and explained in my letter some of my trials and tribulations throughout this past year.
My husband seems to understand the disease and along with Doug, harps on me to slow down and take it easy. Advice that I try to follow, but am not very good at YET! My youngest daughter (age 19) tends to ask "are you sick again?" question while rolling her eyes. I think this is her way of dealing with this. My other two ask questions and listen when I whine, but I really don't think there is complete understanding and that I can understand. I do not want to deal with it every day, why should they?
good thread Jack....thanks for starting it!
coffeelover

**Sangye** · 12-30-2009, 11:19 AM

Lisa, dealing with it is one thing, not having compassion for you is another. You are worthy of compassion!

Doug · 01-12-2010, 08:34 AM

Originally Posted by Sangye

I hope you'll keep harping on that, Doug. Experience is valuable, and I can't do all the nagging in the group!

That's why I was so happy elephant turned out to be so naggy. Elephant's good ! Yes, I am reminded of Lucy Van Pelt in "Peanuts". She would remark, too, from time to time about what a burden being the resident nag was! Sangye, I am glad to be a nag, if it helps remind people not to take shortcuts on the way to remission or a better state of health. Doctors can be total idiots, too, but we generally are best served by doing what they tell us to do. If fellow weggies feel they might have an idiot for a doctor, then that's where our collective experience can help, too. [I'd like to emphasize, as we did to Gwen, though, that we never want anyone to feel run off the forum because of this nagging! It's done in love and with mutual respect for a fellow weggie. We are in this together!]

**elephant** · 01-12-2010, 11:53 AM

I am glad to nag. I do it because I care, like everyone else on this forum. As a nurse I had to be persistant and nag to the doctors about stuff and nag to my fellow nurses and nag to the patient's that I took care of. I was a nice nagger.

Doug · 01-15-2010, 08:07 AM

That's right! I forgot you had a nursing background. Of course you are a good nag (for the very good reasons noted!)! As I've noted elsewhere, I have a profound love and respect for people in the nursing profession. Their nagging helped me keep up on my respiratory exercises, my physical exercises, even my spiritual execises. To the last one, heros of mine!