How does your Wegener's Affect your Family?

[delorisdoe]

Im not so sure it is healthy...that is why i am amazed.

leigh

[ArlaMo]

I won't lie - it has been a difficult year! My husband is a physician, so in some ways, it is even harder on him. He's an ortho, so most of his patients are "fixable." He can't "fix" me and I think that is a huge blow to him. We couldn't even figure out what was wrong with me for about 6 months, but I am so grateful he was with me because he eventually did figure it out.

We spent the first 17 years of our marriage poorer than dirt while he was in school, residency, fellowship, etc. We had so many big plans for when he was finally done. And my poor health really curtailed those plans - he tries really hard not to make me feel guilty, but I know he wants to do all the stuff we planned. I was also the one to do EVERYTHING at home all those years - he was gone so much. I think the whole family got so used to that. The kids do help, but...they're still kids. They make messes. They are busy. They are used to having a mom who took care of a lot.

One thing my husband has been really great about is the appearance side effects - I'm the one that has the harder time with those, for sure. Being almost bald, gaining so much weight, having my face covered with steroid acne - I tend to hide out at home rather than going anywhere because I hate how I look. He's so good to make sure I know he still thinks I'm beautiful

We'll have our 20th anniversary this summer - I hope I'm in remission by then and that we can start doing some of those things we had planned!

[drz]

We take turns on the care taker role. Before I got diagnosed with Wegener's I was the care taker (spouse has cancer that is incurable but has been slow growing). When I got real sick with Wegener's we switched roles. When I started to recover into a drug induced remission, I became the care taker again. I believe the stress of my illness contribute to her resurgence of her cancer. It is really tough right now when we both are sick and not able to handle any care taking for each other. Neither role is easy but i think the care taking role is harder when a family member is doing poorly. It is a little easier at times when you both have chronic life threatening illnesses and you know you need each other because neither one is capable of taking care of them self (at least not for long).

[Daggar]

.....I won't lie - it has been a difficult year! My husband is a physician, so in some ways, it is even harder on him. He's an ortho, so most of his patients are "fixable." He can't "fix" me and I think that is a huge blow to him. .....

Wow! It's got to be tough to be in the medical field and realize how difficult this disease is to deal with. We met a couple at the Children's Hospital when Holly was admitted that had a 4 year old daughter diagnosed with leukemia.... both parents were physicians.

I also have to mention that it is hard on siblings of young WG patients because they do feel that their world has been turned upside down as well. Holly's sister Shelby has been very good in dealing with it but there are times I really feel for her as well. There are things the family used to do together but now we have to be careful for Holly's sake. Everything has to be scheduled so that Shelby continues to do the things she normally does which usually means one parent with her and one with Holly.

Taking care of young children while dealing with WG would also be high on the list of "amazing accomplishments"!!

[RCOSSIO]

My wife is my biggest supporter...but I have not stopped. I continue to enjoy my outdoor activities, 20 mile bike ride, boating this weekend and golf at least twice monthly. But really its her support that I live life in the "NOW".

My next venture is getting back to the ski slopes...after a four year hiatus.

Yes there has been moments when I am physically worn...but it was when WG started rebooting its system.

But what I am really saying is...with all of our family support, the ONLY ONE WHO CAN UNDERSTAND WHAT TRULY IT MEANS TO BE A WEGGIES IS US...and for that I am greatful for all of you

[JanW]

What Richard says. I think that the people on her understand the best, and compassionate, experienced docs the second best. Family is third best but they come from a place of emotion and I think that it can be hard for them to know what to say and what not to say, how much to help and how much to hang back. For instance, I would prefer now for my husband to not come to doc's appointments (and he doesn't) because I'm pretty well right now, and I also feel that as an adult I would just prefer to have that private, one-on-one relationship with the doctor. I also don't want my family coming on these boards - I feel that this is a private place for me just to vent or ask questions without getting other people worried.

I've had a relatively easy time of it, but there's no doubt this is life changing.

[Daggar]

.... the ONLY ONE WHO CAN UNDERSTAND WHAT TRULY IT MEANS TO BE A WEGGIES IS US...and for that I am greatful for all of you

Completely understood!!

That is why I had trepidations in even joining the site -- guest only for the first 3 months reviewing some of the posts. Holly wouldn't until I had and even then she is more interested in connecting with kids her age who are dealing with similar issues -- ie school/friends/etc.

Sooooo.... if I ever ask a question or make a comment that seems out of line.... let me know!

Holly has begun to take some responsibility in her treatment and scheduling but meeting with the doctors is a must at this point. I find myself backing off more and more in hopes she asks questions but I still have to sit down with them afterwards to go over concerns. I'll be there until she kicks me out!

I guess that's the "dependent" side of the coin as opposed to the spouse.

[Sangye]

Daggar, you are always welcome here.

I think it's great that you're teaching Holly how to participate in her own care.

[delorisdoe]

I dont know if i have ever asked a question about it at all in the ten years ive had it. I really dont remember.

[JanW]

And I think that it's great that we have spouses here too, like Brian, whose spouse wants them to be here.

But I completely see why at the Symposiums when they have the caregivers forum they say ABSOLUTELY NO PATIENTS ALLOWED.

We all have different needs and reactions. And, yes, it's hard feeling like a child (or dependent on) your spouse. I'm a very aggressive patient (as he would be), and he was asking all of the questions before I could even get them out of my mouth, which made it seem like I didn't have the questions (or was scared, or whatever).

I ask a lot of questions, and even if I didn't have a question (which I always do), I would 'make up' a question to engage the docs. Doctors like patients who are engaged in their own care, and ultimately, you just get better 'service.'