*sigh*
I feel low even asking this, but it needs to be asked.
I'm 26, my girlfriend is 22 and she has Wegener's. She was just switched to Rituximab from Methotrexate. I need to figure out if being with someone with Wegener's is something that I can deal with - for the rest of my life if we get married. I want to figure this out before things get too serious. I don't need replies like "you should leave her because you obviously don't care enough about her by asking this."
I don't know what the outlook is for people with Wegener's. I've been there as she's coughed up blood. I've been there as she's clutched her side on the floor, overtaken by the pangs of pain, described by her as "someone cutting her open and f*cking around inside." I've been there when she's been too weak to do things, and I've helped walk her to the bathroom when she couldn't do it herself. I've been there as her nose has gotten softer and softer as her body eats away the cartilage in her nose.
She's been on Rituxin for only a couple months now and we don't fully know how she'll respond. She hasn't had any issues so far.
My parents, who are in their 60s, are absolutely opposed to us being together. They've never even seen or met her but they say I need to be smart and break up with her immediately. Through the years, they've know people who have fallen for sick people, and there's always so much sorrow as the other person passes, sometimes slowly, and sometimes ruining them financially. They tell me that I absolutely don't have enough life experience to realize just how bad of a situation I'm getting myself in. They're pleading with me to break up with her. "There are so many healthy girls out there who you could be happy with. Why would you pick her?"
My mom's an acupuncturist so she knows some medicine. She says my girlfriend will eventually waste away - her eyes will go blind, her major organs will waste away, her beauty will be replaced by numerous deformities, and she will eventually require constant care before she passes away.
They say that she might be good now because she's young, but the long term outlook is abysmal, and that's what I need to look at when I think about someone I may want to marry and have children with. And they're afraid our children will have Wegener's too.
So - I'm a little desperate and quite sad. I need some advice and want to know what is the present outlook for people with Wegener's. I heard that the survival rate is 90%, but of course, that stat may not be entirely accurate and doesn't show *how* they are surviving, what their quality of life is.
Bookmarks