I didn't know Mark when he was diagnosed, I met him when he was 19 and he told me about his CF immediately. We got serious rather fast and he wanted to make sure I knew about it because he didn't want me freaking out and leaving later.
CF takes a lot of time, the vest/chest PT, the nebulizer treatments and such and I can tell it's hard on him to be tied down with those things. Seeing him get frustrating with HAVING to do them to stay healthy gets me frustrated FOR him (if that makes sense). but I also think that CF has made him the kind, generous, thoughtful and considerate person that he is. It gives him a perspective on life that others may never consider.
The hardest thing for me is knowing he doesn't want a transplant. I knew that from the first time we discussed it. It doesn't change the fact that I take it a little personally. THat I'm not enough for him to want to stay around (I know this isn't the case, but I can't help but feel like it sometime). But I also realize that it's a personal decision and really has nothing to do with me at all. It's a decision he made YEARS before he met me and hoping that it will change some day is pointless because it never will change. But it still hurts and is very difficult for me.
So YES, this is hard to cope with . I mean, sure, we are all going to die someday. But just stopping to think and acknowledge that my Mark may die before me, a long time before me, is pretty darn sobering. And Unfair. I get mad at the world about it sometimes. It's not fair, why him, why everyone else with CF. What did they ever do to deserve this???? But it is not someting you dwell on (at least I don't) or it would just overcome me.
A huge challenge for us, as a couple and individually was the whole male infertility issue. I knew about that being a possibility from the beginning too, but we didn't know for sure for quite a few years. When we found out the results, it was a shock, but it wasn't. It was trying on Mark because he was fearful I was going to leave him (this he told me this years later) and trying on me because I wanted a baby so bad, we were ready at that time. But then the issue became finances.
We had both kind of held out a glimmer of hope. The biggest challenge regarding the infertility was the financial aspect. I have talked to quite a few other CF couples about this and some of them don't struggle financially at all with this infertility issue. Some of them get hung up on using artificial ways of becoming pregnant, or are very fearful of passing CF onto the child from the non-CF spouse. But for us, it was the simple fact that we didn't have money or insurance coverage for In vitro.
When we lived in San Diego CA they had a service called IHSS (in home supportive services). It was GREAT to have. I could either pay (through them after we paid our small co-pay) to have a nurse/Medical assistant come to our house and help Mark out. It's not that he desperately needed the home care, but it helped him, ESPECIALLY when he was sick to have that person there when I was gone to help out. AND it helped me to have that person there in the day to do chest PT and help Mark get all his therapies done, eat all the food he needed to (they helped with cooking and minor cleaning too) during the day. It allowed us more time together in the evening and didn't require me to take on such a load of "caregiver". The last thing I want is to feel like his mother or nurse. Sure, when he's sick it's fulfilling to nurture him and take care of his needs. But doing that day after day really wears down on the relationship.
We were bummed to find that in WA (when we moved last year) that there was a similar program here, but it wasn't quite as available in our area, the co-pay was MUCH more money and their income limitations were rediculous and we no longer qualified. That program in CA helped us to help eachother and keep Mark's health inline. It's been much more difficult here in WA to not have that assistance for him, and for me to sometimes take on more of the caretaker roll than just when he's really sick and both of us are worn thin with the care that CF takes sometimes. I think programs like this need to be available in ALL states with more reasonable income limitations.
This site is a supportive place for me. A place to come and talk to other CFers (to maybe get their perspective on things and realize why my husband thinks that way too), to talk to other partners of CFers and to learn more about CF. My husband comes here too, not nearly as much as I do, but he joined and is here occasionally. I cna't speak for him, however he seems to enjoy talking to others with CF as well as he's not at all into PERSONALLY meeting any other person with CF. He's too concerned (and rightly so) about cross contamination.
that's about all I can think of. I was going to email this but I"m having problems with my email so hopefully you get this here.
