In love

Hi,

I have cystic fibrosis, I'm 43 years old, and my husband and I are celebrating our 10th anniversary the 29th of this month.  By the way, my husband is 8 years younger than me, so if anyone got the short end of the stick, he did. 

We married for better or worse, in sickness and health.  I went on permanent medical disability 5 years ago.  My husband had thought that I would work forever, retiring when he did.  I knew that wasn't going to happen, but expected to work longer than I did.  It was quite the adjustment for both of us. 

But we did adjust, we are still adjusting, if for no other reason than each day is different and we can't predict how it's going to turn out. 

I used to think that I would die from lung involvement, if I didn't kill myself first.  (I suffer from chronic depression and have been suicidal many times in my life, though much less since I married.)  Then last year I was diagnosed with chronic pancreatitis after I had a reaction to an iron infusion in the doctor's office and stopped breathing.  I woke up to hear someone saying, 'let's start CPR'.  I shoke my head, which pretty much alerted them to the fact that I had regained conciousness.  That was pretty scary and so I became convinced I was going to die from pancreatitis.  We now have it controlled very well with pain management and digestive enzymes.  I am no longer so scared of dying from pancreatitis.  

What I'm saying is, none of us knows how long we are going to live.  If you love each other and talk things out, be honest with each other, seek help when it's needed, then you'll be okay.  Sure, you will likely face end-of-life questions sooner than most couples, though with the Terri Schiavo thing, I think more people are giving that some thought anyway. 

Being married or in a relationship with someone with CF is hard at times, very hard.  If you're not willing or able to make that committment, then don't.  There is a lot involved.  But who's to say that you wouldn't marry someone that developed cancer and died at a young age?  Who's to say that you won't die in a car accident on the way home tomorrow?  None of us knows how long we have, but many of us with CF have a greater appreciation for today because we know how precious it is. 

I'm saying this as much for me as for you.  I often think myself unworthy of such a wonderful husband, of the wonderful things we've been able to do, of the time we have together.  These last 10 years have been the best of my life.  And I think my husband feels the same way, in spite of all that is me:  the Vest, nebulizers, hospitalizations, home IV antibiotics, high drug costs, nighttime oxygen, Restless Leg Syndrome, pancreatitis, chronic depression, and just generalized grumpiness from time to time.  <laugh>  I'm entitled to be grumpy every now and then.  Heck, everyone is. 

Look inside your heart, pray about it.  If it's meant to be, it will work out just how it's supposed to.  I wish you well.  Please feel free to ask me any questions you want or make any comments. 

CathyP

I'm a Peds nurse for 15 years now. I know it is hard to commit to a person with a chronic life-threatening disease. . One of my co-workers married a man with CF. I'm sure it is a hard decision to make. Some of my patients that have been married seemed to be very happy with each other. I'm sure they had problems, too.

If you think about it, even those without chroic illnesses have no quarantee of how long they will have. One of my nephews died recently, no he wasn't sick, was just 23 and a father of 2.

Hi all,

I joined this site because I am in need of support of other CF people and supporters. My boyfriend/fiancee' of a year and a half recently broke up and I have been on Auto-pilot the last three months without really realizing it. I just came out of the fog and I have realized what I've lost to CF. A great love in my life. Steve has struggled in our relationship because I have always wanted to be married and have children. Because of the CF, Steve has not wanted these things. I know at one time in our relationship he tried to believe, he loved me that much, that we were engaged until he said to me about the feelings of marriage and children with him have not gone away and will never go away. I struggled with that and I finally prayed. I wanted him in my life and I love him so much that I went back to him and said that I have to marry you for you not because I want to be married and have children. With that our relationship continued pretty good, of course with the ups and downs that CF health brings and we were good until he moved out of his parents place. A 30 yr old who has lived in a very closely connected world and has not ventured out. Always fearing the worst I suppose and with all due respect I don't have a Chronic illness to say how he is to feel and how he is to live his life, but after a year and more I was shocked that he didn't give me a key to his place. and from there.... our relationship struggled even more. and he got sucked into this depression once again that as long as I am with him I will never have what I want and he can't let our relationship cont. and I along the same line felt some resentment building and I love him too much to and so we both said we can't do this anymore.... and now I'm realizing that I want to be that person that he needs and now it's too late.  How do you male CFers feel about the future, marriage, kids and etc...?????? tell me how I should react?

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Hi Kim,

It's funny that you should bring this up. We had sort of the opposite situation, my husband and I. (We are celebrating 10 years of marriage this month by renewing our vows on the 24th in front of both our families as well as friends that weren't there the first time.)

When we decided we had to get married in order to use my husband's VA loan (I'm the one with CF), we had less than 2 weeks to get married. This was my second marriage and with my first one, my mom told me the day of the ceremony that it wasn't too late to change my mind. I was 24 and had never lived anywhere but with my parents. Had they had they're way, I probably would have stayed there forever.

Anyway, my husband said, if your parents are there, I won't be. Well, having been married once, it was a no-brainer. I loved this man with all my heart even though we had known each other only 8 months. So, none of my family was there, just his brother and a few friends. My mom got over it, we sort of worked things out, in fact, we're still working things out, even though we've been married almost 10 years now. Part of the reason we're renewing our vows is so that both families could have a chance to "see us get married". I know it would mean a lot to his family as well as mine. Another part of the reason is that my sister died almost 3 years ago, and my parents are getting older. They are both in their mid-70's now.

It's not likely, I don't think, that your mother will actually disown you, but if she does, then so be it. Like my brother-in-law has said several times over the past couple of weeks, your spouse is the only relative you ever get to pick.

If you are truly this much in love, and love each other for the right reasons, then think long and hard and then do what will bring you peace of mind. Pray about it, if you're the praying kind, and ask God to show you what you should do.

You don't mention you b/f's health. Is he relatively healthy and able to work? Or would you be supporting him right off the bat? Fortunately I was able to work the first five years of our marriage, going on disability at age 39. Some people with CF are able to work longer, some not nearly so long.

I would like to say that being married to someone with CF is not an easy row to hoe. It's financially difficult as well as emotionally and physically pretty hard at times as well.

I can understand your mom's position, because she may be seeing the big picture and seeing what you will give up being married to someone with CF. I'm not saying you shouldn't do it, I'm just saying think it through long and hard. My husband would trade being married to me for anything in the world, even though I'm no longer able to do a lot of things I used to be able to do. It was hard when I stopped working; money was tight for a while there until my disability came through.

But through all of it, and there's been a lot in 10 years, we still laugh each day, we love each other more now than ever, we argue more now than we used to, but we work it out, too. (It took me a long time to reallize that I could stand up for myself, could disagree with him, even argue with him and know that he wasn't going to leave me.) We have a wonderful life together. It's not perfect, but neither of us would trade it for anything. I don't quite understand why he picked me to marry when there were other women that wanted to date him, but he did and I'm so wonderfully happy and grateful. I am truly blessed.

Hope this helps. If you want to talk more, that's fine. I see where your mom is coming from, but I also know that with all the sacrifices, i.e., no kids for us, only dogs, not being able to have a wife that can do all the things he would like to do, you give up a lot. But if he's the right person, you gain so much more.

Good luck!

Cathy

hi kim this is kim r i know what you mean my mom is the same why but something that she told me when i got married is that she not the one who got to live with him and you are and if you both are happy do not let her get in the way of that she will come around when she is ready i hope this help a little bit from kim r

Hi Kim,

Hang in there.  Your mom likely won't disown you.  She just wants the best for you, I'm sure.  That or she's like my mom and can't bear to see her kids grow up.     I'm sure she just wants you to have a normal life.  Which isn't what you will get if you marry someone with CF.  You won't get normal, but you won't get dull and boring either! <lol> 

But what my husband has reminded me of many times is that you could marry someone that is perfectly healthy and lose them to a car accident early on or lose them to some other disease.  Basically, it's a crapshoot.  We're all going to die; some of us sooner than others.  That's just how life is.  It's just that most of us with CF are going to die from CF.  Sad but true.  That doesn't mean we can't have productive, even normal lives.  That doesn't mean we can't get married and have the same ups and downs as normal people.  We can!  And we do.  Of course, not all of us choose to have children, but not all married couples choose to have kids either. 

And what my husband says to me when I ask him why he stays married to me is, "I love you".  I can't imagine, if the situation were reversed, marrying someone with a chronic disease, but then again, I don't know what it's like to not have a chronic disease.  I'd like to think I would marry the person I loved, illness or not.  We're not second class citizens, unless we're women (semi-kidding there, but that's for another forum), we're people, people that have dreams and desires, people that fall in love and out of love just like everyone else.  If anything, I think people with CF have a better understanding of what it means to live life a day at a time and make the most of it, enjoying whatever we can, when and where we can. 

Hang in there. 

Cathy P

To The Girlfriend,

My name is Kim K...I am 23 y/o and also have a 23 y/o bf with cf...It's been a rough few months for us as a couple since we first started dating...My mom has been less than accepting, if not hostile, toward our relationship, forbidding me sleeping over his house more than once a week...I've been thrown out of my house by her because of this on a number of occassions, most recently this weekend, when I decided I wanted to sleep over Saturday after sleeping over Friday also...She let me back in reluctantly and constantly makes known her objections to our relationship..We were friend for 4 years before dating, so we have a solid foundation for a relationship, and we love each other very much...Of course the marriage/children issue has arisen, but we take things one day at a time for now...I love him like crazy and have come to the point where I dont care what my mom thinks (that he wont be able to support me/get married/have kids, etc.)....We are very happy besides the mom issue, and support each other through everything...He is the rock in my life, always there no matter what has happened, so my advice to you is to just hang in there and stay strong...Feel free to respond with any advice/situations you have been in as a gf of a cf guy, I would love to hear from you...  =0)

Kim

To anyone who may understand,

I recently became engaged to my fiancee...He has CF, and everything is great except lack of support especially from my mother and family..Any advice/suggestions would be appreciated...Thanks....

Kim

Wow, Im relieved to know that there are so many others like me - although Im sorry at the same time. I am 27 and have known about my CF since, well, forever. I just got married in May to a guy that I am madly in love with and I feel tremendous guilt over marrying him. During our 4 year relationship I completely downplayed my illness because I always felt that denial was going to extend my life or something rediculous like that so a couple of weeks before our wedding I broke down and tried to explain that perhaps things are more serious than I thought and I wont be able to have kids and we should call the wedding off (even though it was a $20,000 event that would have been a disaster to call off). He insisted that he wanted to spend every minute with me that he could and that he understood the risk when he proposed to me and blah blah blah... regardless of what he says I feel that I am ultimately responsible for allowing him to fall in love with me when I am just going to leave him alone long before he is ready and I love him so much that I cant bear the thought of him suffering. Im 27 and relatively healthy although the physical pain is becoming unbearable and Im nowhere near where I was when he and I met, I probably have a good 10-15 years in me, maybe longer since I am hopelessly stubborn. Sometimes I think I am just being dramatic... there is no one in my life that has CF or any dis-ease that is comparable so Im sort of stuck in my own head about this and would love to have contact with others who understand. I cant talk to my husband about this because I think that he would rather avoid it til it slaps him in the face, so I feel very lonely. I am naturally a positive person, upbeat and happy but there is a side of me that travels to such dark places and its purely out of loneliness and the fact that I have no other person to validate or invalidate my thoughts... so HELP!! I need you guys! My thoughts are so scattered right now, this whole thing is so new but possibly a life saver!! Im dying (not literally) to hear from someone :)

kkrx said...
To anyone who may understand,

I recently became engaged to my fiancee...He has CF, and everything is great except lack of support especially from my mother and family..Any advice/suggestions would be appreciated...Thanks....

Kim

Are you really close to your mum? I'm having similar problems at the moment. Except it's me who has CF, not my partner.

When we first got together,my mum went ape. Even though I was still only 17, I wasn't living with her at the time. I'd moved into my mates flat, as I was fed up with my mum, and her attitude to everything. Well,my mum weren't best pleased. She hated my bf from day 1, and it was so hard, as I love him to pieces. I told him about my CF on our first date. He went and researched it rather than quizzing me, and I was amazed. He'd read all of the nasty facts about CF, and still wanted me.

After an argument one day though, over the net, then the phone with my mum. She came round to our house, that we'd just moved into. She suddenly went insane, and threw a plate at Paul. Mainly because he was still smoking, just not in the house or near me. I'd agreed to that. Well, the plate split open his knee, there was blood gushing everywhere and you could see the bone. yucky! My mum had to drive him to A+E, and yet paul was still there supporting me, stopping me from crying:P

Even then though, Paul was there for me. He realised it wasn't my fault, my mum is actually just insane.

We've been together 4 years in April. And my love for him will never change. We got engaged on my 18th, he was 23. We had a big party to celebrate. It was good, I met most of Paul's family, that I'd not met before, and he met mine. My mum must have told some right tales about me, as my family had pretty much ignored me up till that point. And weren't very talkative on the night.

Paul's mum went over to say hello to my mum, having not had a formal introduction. She explained who she was and everything, and was smiles galore. My mum decided it would be best just to snub her though, and stuck her nose up, and ignored her greeting, just mumbling. I heard about this, and the next person to be sent over, was Paul's aunty, exactly the same thing happened. Paul's family just told me to ignore it and enjoy my party so I did. 

That September we were due to be getting married, and in barges my mum again. She talks me into cancelling it all, by pestering me everyday, for weeks. Kicking up a fuss because paul's mum was paying, so she didn't get a say on decs and stuff. She kicked up a huge fuss, and I'd had enough. I know now though, I should have carried through with the wedding.

Tomorrow, I'm having a birthday party, at Paul's mum's house, for my 21st birthday, which is on Tuesday. Were having it there, as 1, it's cheaper, 2 it's a huge house, and there used to doing parties, 3 because should I start to tire. I will have somewhere i can go to recharge out of the way.

3 guesses on who's refused to be there.......Yes, that's right my mother. She's got all upset as she wanted to arrange something for me, at a pub somewhere.

Yes, a pub, those smokey places, where noone has to smoke outside, like they will be doing at paul's mum's house.

So, none of my family are going to be at my 21st birthday party. Do I care though? I think not! All my mates are going to be there, all the people who really matter, especially my gorgeous fiance.

My mum's not talking to me right now, partly because I'm not upset that she's not gonna be at my party. The other reason, is because I snapped at her over the phone the other day, as she was going on and on about muscular dystrophy. Something I've already told her I don't want to know about until it's absolutely certain that that's what I have, as I don't wanna go worrying myself. 

She says she wants to take me out for my 21st now, for a meal somewhere. I'm telling her no, as Paul won't be invited, I can guarentee that. Also, I can't be doing with her whinging and moaning about everyone and everything. 

It's funny you know. What she doesn't realise yet, is my reception for the wedding were planning this year, is gonna be at Paul's mum's house. My mum's getting no say in anything at all for my wedding. She had a choice. She could have give me money like she'd been promising all year, for my wedding, so I could have held it a week after my 21st, like I wanted. But she decided to be clever and buy me vouchers for New Look, a shop I don't go in for starters. But she's done it so I can't get married. She's spoiling things for me big time. Which is why I've decided, that if she gets any worse, I'm actually disowning her. Only reason I haven't done yet, and put up with all this crap, is so when my 11 year old sister grows up, she has someone to escape to. Same goes for my brother, who is really struggling at home wth my mum at the minute.

I say we should just all ignore our parents, the more they upset, the more you ignore. They shouldn't get to decide on who you should and shouldn't marry, or even go out with.

The choice shoud be yours and yours alone.

TheGirlFriend said... Hi,
My BF who  is 29 has CF and I just recently found out about it. He started keeping it to himself after being abandoned by friends as a kid. He has some insecurities about staying in a relationship- looking into marriage and kids knowing that his life is going to be cut short.  I'd like to know if there are any girlfriends, boyfriends, husbands, wives out there whether you have CF yourself or not- how do you cope, how do you support eachother and manage the disease as a couple?

 We cope really well, although I do feel a lot of guilt for putting this burden on my bf.

I'm always giving him the option to leave, and at each new bit about my health, we have the same conversation.

I tell him it's got worse, and if he wants to, I won't stop him leaving. If it ever gets to much for him. He says he loves me though, and that the illnesses won't bother him, no matter how bad things get.

I feel guilty though, as I know he wants kids as much as me, but we've been trying for a few years now. And it'sjust not happening.

He still wants to get married, and aslong as it's what he wants, I'm fine with it. I've had dreams of marriage and kids since I was little.

I support my bf, and he supports me. It isn't a case of, I'm the ill one, he looks after me that's the end of it, like it is with a couple of mates of mine. He has his weaknesses, and gets more colds than me, if he needs the support he gets it, even if I'm feeling a bit off.

I know he's having a lot of trouble coping with stress right now, and has had to take time off work. With all my diagnosis's recently, it's getting a bit much for both of us.

I try to keep almost everything to myself, so he doesn't suffer. But it's hard for me to do that. And it ends up worse for him, when I have my big depression outbreaks, as I get snappy and teary, and he only ends up worrying more.

I love him to pieces, I really really do. And I never want him to leave me. He's like the other half of me, and I WILL be very lost without him. But I still feel guilty, that I've put this on him. Even though he's come into the relationship with eyes wide open, knowing everything. I think he's just crazy