How does your Wegener's Affect your Family?

[Jack]

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]

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]

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

[elephant]

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]

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]

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

[Barbara1966]

My daughter ( also age 19 ) telling me, "Do not be such a drama queen," my son is more understanding he is 21, my husband I think, he do understand but he is never home (he work on a ship ) every time he call, he will asked the right questions but feels like he never listen to the answers.

[Doug]

Dennis Coffeelover is the ideal spouse for a weggie! Lisa needn't worry about over-doing, because Dennis is there to hold her back if I'm not. You are right, Sangye! It takes a village to nag some people into shape, and there are weggies on this site who benefit from us nagging! It's a living! Barbara- stick to your guns! Your daughter is at an age where (as I'm sure you know- see Lisa Coffeelover's comment above about her 19 year old, too..!) she still sees herself near the center of the universe. Your son and husband probably hear more than you realize, but the message we weggies have to put out about ourselves isn't a happy thing to hear anbout a loved one. Think about what it took for you to comprehend, accept just what WG meant in your life. They have to "get it", too, though they don't have to go through the physical, emotional, spiritual changes we do to reach that point. Keep being a "drama queen" if that's what it takes for you to do what's best for you. Not to point fingers (at elephant) or anything, but there's a new one among us who can nag just as good as you, Jack, me, and some others! That's good! Plus, elephant is managing to get family to read this site. Another plus on her side as the newest nagger! How many times have we said weggies should get their family members to read through this site to get a flavor for weggie life? Elephant, bless her over-worked heart, actually managed to do it!

[pberggren1]

I think I might need some nagging. Or maybe some sound advice.

I couldn't get a hold of and of my specialists for the last 2 days. My Rhuemy and Neph are out til Jan.4 but my ENT is in Wed. morning. I think I will try and talk to my ENT's receptionist and see if she thinks I should come up to the hospital in Saskatoon and get checked out.

My sinuses seem to be getting slowly worse. There is more mucus, crusting, and bleeding and my right nostril seems to closing off.

The energy level is decreasing as well and the joints don't seem to be getting any better either.

Also my sense of taste and smell is way off as well. I'm getting turned off from eating.

My skin has been itchy as well.

I also started taking some melatonin at night to help me sleep better. I just now saw on the bottle that it says do not use if you are taking immunosuppresive drugs. I am on Cytoxan. Is that considered an immunosuppresive?

Well Sangye, Doug, Lisa, Elephant, Jack and anyone else, hit me with it now.

[Sangye]

1) Cytoxan is a major immunosuppressant.
2) I don't know if it's true for you, but one sure sign that Wegs is flaring up for me is insomnia and restlessness at night (As treatment works, I can sleep ok again)
3) Itchy skin could be kidney problems.

I suggest you call your ENT early tomorrow morning and get in to see him by the afternoon. He can order blood work and urine and maybe increase pred to get you through the holidays. Too many symptoms of a Wegs flare to wait until next week.