Need some advice about dating a girl with Wegener's.

[Elena]

Fuzzybabybunny, I think you need to talk to your girlfriend about this.. When I met my boyfriend I had been sick for 1 and a half year. I know he worried a lot, about our future and all the same things you worry about. But we talked about it, a lot, and as he got better informed of what wegs is and how it might affect me, he eventually decided that he would never leave me because of the disease. Making me so unbelievably happy.

I live my life like every other "normal" person. Except I get out of breath more easily than before. I don't even get tired that easily. Most days neither of us "remembers" that I'm not "normal". Sometimes though I get sick, but I get treatment rightaway and then I get better again. Of course, I don't know how my disease will affect me in the future. I might live like I do now, or I might get worse.

I'm not sure what I'm trying to say. I just had to say something, because I relate so strongly to your situation. I just know how broken I would have been if my boyfriend had decided not to take a chance with me. I hope for your sake, and your girlfriend, that whatever you decide, your parents will accept it.

[freakyschizogirl]

I just wanted to add my dad's story. 20 years ago he was married to my mum and had me and my sister. 3 years later they divorced. My dad remarried and has had a happy 20 year marriage. Flash forward to today my mum has severe rheumatoid arthritis and my stepmum has aggressive cancer and is currently on her second course of chemo.

We laugh about it because either way, with either wife, my dad would've turned into a carer.

You cant predict the future, but you're lucky that you've got prior warning.

[manalolana]

Aloha Fuzzybabybunny,
I have been with WG for about 3 years now. I have had a period where I was not functional at all. I was engaged at the time when I stated getting ill with this and shortly after, my ex-fiance decided that he does not have what it takes to support me. Things happen for a good reason and I am so thankful that we didn't work out. To me, it is worse to have someone by you who cannot accept that I am no longer as active as I used to be.

Fast forward about 2 years, I am with my best friend who is in the medical field. I actually am the one who didn't want to date. Didn't want to fee like a burden. He is aware of the consequences of the illness and still wants to be with me for the rest of our lives. And we have been together for a year now. Like you, he has been with me through varies treatments with not so fancy side effects. I can tell you that he has made this journey much less lonely. But I know it's not for everyone! Financially, I no longer have much disposable income and I am thankful if I have a day where I am functional to do my "normal" activities like gym

I am making an assumption but seems like you are emotionally tired. I have been also on the opposite side of being a caretaker and it's no fun. Sometimes i think it's worse than being ill myself the fact that there is nothing I can do to cure it but just being there by their side. All I can say is whatever you decide, you have to be true to yourself first. Good luck.

Thanks guys for all the advice. I think the crux of the matter is this:

What will she be like as her disease invariably progresses? Or does Wegener's even invariably progress? What will she be like 20, 30, 40 years from now. Looking at something like Parkinson's disease, it's only a matter of time before someone with it become bedridden and unable to take care of themselves. Their loved ones have to feed them, clean them, change their bedpans, pay for medication and care, and be drained financially. Knowing this, I'm sure that many people, when given the chance, would not date someone with PD, or they would get out of the relationship early on. Yes, PD doesn't change who the person with PD is as a person, but there will be extreme hardship in the future, almost guaranteed.

Is Wegener's like this? It's fine now, but what about decades from now?

[LisaMarie]

I am glad you have the guts to dig deep inside yourself to ask this question.....I have had WG diagnosis since May 2010...It has benn a wild ride...I have been sick since June 2009 ...I went into Respirtory Failure in September 2010 and almost died...MY husband changed he can not deal with this disease...We don't always look as sick as we are and most of the time I would rather sleep then get up and go to work...I am mad to be so fatigued i can not do the things with my kids I could before but grateful I am still alive to see them.....You have stood by her thru some of the tough times...so I think if you truly love her go for it....There are no guarrentees in life and no time frame that we can go by.....I wish my husband could remember our vows sickness health ...good and bad...but I can not make him understand or be able to deal with it.....I was healthy the first 8 years of our marriage and worked 70 hour weeks plus did stuff ...now i am barely able to work 32 hours a week and push myself to do things...then i pay for it cause my body gives up and I sleep for about 24 hours.....so my hope and prayers go out to you and your both are luck to have each other

[Sangye]

One more thought, fuzzybabybunny. You've asked about what she will look like, be like, etc... decades from now. Have you considered asking those questions about yourself? Can you be certain that you won't get sick? What if she goes into lasting remission and is perfectly fine but you get sick with something serious? That scenario happens all the time and is worth contemplating.

[RCOSSIO]

Hence...why I live for the "Now"..enjoy the day, live for the moment and believe that every day is special.

Its not that I don't care, but I just don't get overly preoccupied with the future.

Haha Sangye...I went back and looked at my old photos twenty years ago, compared to now, trying to figure out when Warner Bros brought "Porky Pig" out of retirement.

[Sangye]

We know something most people don't-- that every single person is just a blink of an eye away from having the apple cart of their lives completely overturned.

[norcalian]

We know something most people don't-- that every single person is just a blink of an eye away from having the apple cart of their lives completely overturned.

well said.