Love and CF

[Lilith]

Hello, everyone!

I'm new to the site, and I have a question. I'm female w/CF, diagnosed when I was 3. I don't get out very much, and it's hard for me to meet people. I'm just wondering how hard it really is to find someone who is willing to live with someone in my conditon. I'm usually hospitalized every 3-4 months, and I'm on SSI because I can't work. This means that I will probably never be able to get legally married, and I'm afraid of having children because I don't think I could live with myself knowing that I may cause misery for my child because I passed on this disease. Let alone the fact that I could end up dying, leaving my 'significant other' as a single parent... There are just too many 'what if's,' I guess.

I'm afraid that I would cause too much misery for anyone else, and I'm afraid to get involved with anyone and then have to tell them that they may not be able to have a fulfilled life with me. Rejection is a big issue... And I'm sure there are others in the same boat as I am. So I guess my question is this; should I just give up, or are there more people out there than I think who would be somewhat okay with my condition?

Your thoughts on this subject are greatly appreciated.

 

[anonymous]

Hey I am in the same boat as you. I am 24 male w/cf and I actually met who I thought was my mate and got married at 19. Soon after I had to quit work, file for Disability, and started to get sick. My ex-wife divorced me because she thought I was "faking" my being so sick and I was just lazy. Needless to say this broke my heart. Now, I am so scared to even try and talk to anyone about a relationship. I don't get out much either and it is very hard. So I know how you feel.

Hey, what to go out? HAHAHA Kidding.

Eric 24/cf

 

[anonymous]

Hi Lilith -

I was diagnosed at 18 months, and will be 28 in less than a month.

I can't speak for everyone (but there are many on here who have great, loving relationships) but I can tell you from experience, there are men (and women) out there who are willing to take the chance on loving someone with a disease like CF. My fiancee and I met 9 years ago, first year of college, we dated for a short time, but it was me uncomfortable with my CF and dealing with it personally that made me push him away.... fastforward five years and we come to the point in life where I know better who I am, we ran into each other in a store, and the rest as they say is history. We will be marrying July 8. Sure we have had our problems and tears in talking about what the future has to hold. We want to have children of our own, and are going to do our best to succeed at that goal. You will not pass CF onto your children unless your Spouse or Sig other, is a carrier as well. My fiancee has not yet been tested, it isn't because of ignorance or maybe it is, but it doesn't change that we want to spend our life together, with or without children. What we will do if he is a carrier remains to be seen, I can't make that decision until later. My fiancee has two things he says, one that if we have children and I pass on, he can go on everyday seeing me in our child. He also says, He would rather love me for as long as I have then to never have had me in his life.

I guess what I am trying to say is if you believe in love and want it, and are willing to work at it with some rejection along the way then it can be a beautiful thing. There are men who will love you for who you are in spite of your CF, I still have a hard time with this sometimes, feeling I am not worthy or that I am taking something from him. But when we are together laughing, and smiling, those feelings fade.

All I can say is to not give up. I know when you don't get out much that it is hard to meet people. But interaction with people is also beneficial to ones health. Don't feel you are creating misery for someone else, if you can find it in yourself to love yourself and believe you are worthy then you are.

As far as marrying. From my understanding SSI will be taking if married, SSDI will not, I don't know if there is a way to switch (probably not, with our government policies). But marrying doesn't need to be legal, that has been a topic on here also.

I don't know if this helped, but if you want it don't give up just yet. Find places to volunteer for a few hours a day, or take a community ed class -- you never know.

I guess I am a sucker for love and like to think that someone is out there for everyone, as long as you believe it possible.

Okay, I am done, little windy.

Keep your chin up =
Sarah
27w/cf

 

[thefrogprincess]

Hi Lilith, first of all welcome to the site, this is a great place for advice and support.

As far as finding someone, the good guys are out there. I found one who is willing to go to the ends of the earth for me. You just have to be honest from the get go and if he rejects you then you don't want him anyway.

I totally understand how you feel about having kids, we all have to deal with that. Its such a personal decision between the two people having the kid.

 

[anonymous]

Lilith, Sarah pretty much wrote exactly what I was going to write so I'll spare you a LONG post because I love to write... My husband has CF, we met when I was 16, he was 19. His CF didn't scare me, worry me (although sometimes HE worries me-men<img src="i/expressions/face-icon-small-smile.gif" border="0">), make me second guess what it did do was intrigue me and I wanted to learn more. We learned when he was 21 that he had no vas deferens and we could not have biological children naturally (sperm production in the testicles but none in the ejaculate-common in men with CF). He thought I was going to leave, and although a family is very important to me and something I have always wanted, I would never leave him because of that-there are other means of us having children and having him in my life is very important to me. There are many people out there who feel the same way. You will meet some people who are shallow, mean, rude, scared, run off for no reason.... but there are others that will love and be there no matter what.

As far as the SSI, if your spouse makes more than about $8000 you will not qualify for SSI because it is based on an income limit. SSDI is based off of your work history and your family income plays no factor in your SSDI benefits. But, you have to earn a certain amount of money which equals a certain # of credits. Then the age at which you apply for SSDI is when they calculate backwards to figure out if you have enough credits based on your age-all very confusing. I too have heard of people having wedding ceremonies but not signing any legal documents so that the person with CF can continue to recieve SSI, government assistance, medicaid, food stamps... but that is a very personal decision and everybody is going to feel different about it.

And as far as having children and leaving your signifigant other as a single parent, there seem to be a lot of people on this site who have expressed they feel this way (or CFers have shared that their signifigan other feels this way): I would rather have a little one (or a few) who look like my husband and are a part of him, my little mark's running around acting and looking just like their dad-than to not have anything at all. At least if he did leave this earth before me I would have pieces of him running around to remind me of him and our love and all the good times we had. I am also a firm believer in the statement: "it is better to have loved and lost, than to never have loved at all"-but again that is a personal decision/feeling.

Glad you found this site-welcome

Julie (wife to Mark 24 w/CF)

 

[Emily65Roses]

Just a little note to Eric (24 w/CF):

I hope you know not all girls are that evil. She sounds like a real wench. Pardon my comment if you still have feelings towards her, as I don't mean to offend. But someone who says that to you when you've got CF really needs a swift kick in the pants. I just hope you don't give up on girls altogether. Get out there and try again. Maybe now that you're older, you won't find that women are so immature and ignorant. Trust me, some still are. But the intelligent caring ones are a little easier to find after you get out of the high school range. I bet there's someone out there perfect for you. You just have to sift through some trash to get to the good ones. <img src="i/expressions/face-icon-small-wink.gif" border="0"> <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

This is a major issue when you start thinking about marriage and committment. I'm 22 and still havent found a really mature lady to share with. Just keep trying. There are many here in the same boat. Its not as easy as some think it is.

 

[anonymous]

Thanks Emily, I believe you are right, but sometimes the trash gets overwhelming to search through.

Eric 24/CF

 

[anonymous]

I married a man with CF. We were together 10 years, didn't hesitate one moment about being with him. Sadly he past away 11 months ago. It's the worst pain ever, but I would never ever change one single thing. We had a wonderful love, now I am left with great memories and 2 great kids ! There is someone for everyone !

 

[anonymous]

My condoloensces about your husband's passing. One thing that I'm not afraid of when it comes to committing to a relationship is knowing that I'm going to die, rather talking to them about what to do when I'm gone. Did your husband ever tell you that you should move on? Anyone have any suggestions on that topic? It kills me to think that she'll love another after I'm gone. Especially at the ripe age of 30; I don't want to be a selfish jerk and have her be lonely, but hate the thought of her with another man.

 

[anonymous]

Throughout our relationship we talked about the what ifs. We covered everything, how expensive a house we should buy, me being a single-mom, etc. Certainly we both worried about the what ifs but we also realized we didn't know the what ifs would be.

Towards the end of my husband life he was tortured over the idea of leaving us. We mourned for what the kids and I would miss and the things he was going to miss out on. I told him one day I was not going to be able to go on. Withoug skipping a beat he said I would go on, I would go on for the kids and someday I would go on for me. We never talked about me moving on as far as another relationship but I know in my heart Mike would be ok with that. Quite frankly it is me who can't imagine being with another person. But, as this realationahip proved, you never know where life will bring you.

The most positive aspect that can out of this horrible disease was the appreciation of life. We lived every day fully and loved each other completely. It may have been short in time but it was chuck full of love and fun.

 

[Emily65Roses]

Anonymous at 2:09am:
I've thought about that too. I've told my boyfriend that after I'm gone, whenever it is he feels ready, I want him to feel free to find someone new. I don't really like the idea either, but what I like far less is the idea of Mike being alone for the rest of his life after I'm gone. I don't really think about him being with someone else because, well, I'll be dead, what do I care? I mean, I don't like the idea of it now, but I also know that Mike doesn't like that idea now either. I told him as long as he leaves pictures of me around and continues wearing my necklace, that he can get remarried. He currently wears my old medic alert on a chain (it says Emily cystic fibrosis), and we've discussed that after I'm gone, he's also going to wear my wedding bands (the wedding bands that I don't yet have - haha) on the same chain. That was actually his idea. He also intends to get my name tattooed on him after I'm gone. A memorial tattoo. (I don't have anything against name tattooes if they're in memory, because then you can't break up or get divorced haha). I just rambled a whole lot, and I'm sorry for that... haha... but I just wanted to let you know that I've thought about that as well. In the end, as long as I know that my memory will live on (through our kids, pictures, jewelry, tattooes, or whatever), and that the new woman will most certainly know about me, I can let it go. Like I said, I don't like the idea of him being with someone new, but I like that idea better than him being alone and miserable. <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

when my current boyfriend and I started dating we promised one another if the other died we would continue living, if we found love again we would embrace it. I don't like the idea of him possibly growing old in another woman's arms but making him suffer for outliving me would be wrong. We have both taken precautions for the other. We're beneficieries for the other's life insurance, we both know the other's wishes for a burial. We both know that life is short. So we enjoy what we have together now.

 

[anonymous]

How did you get a life insurance policy with having CF? If you don't mind answering how much is it for. I thought u couldn't get one for a pre-exhisiting condition or something like that.

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>How did you get a life insurance policy with having CF? If you don't mind answering how much is it for. I thought u couldn't get one for a pre-exhisiting condition or something like that.<hr></blockquote>

 

[anonymous]

Try state farm, that's what we have (including my military life insruance). WE have a $50K policy on Mark for $15 a month. I believe you can get $100k for about $22, and then on up. His CF is not a factor, we did disclose the information but it didn't pose a problem for coverage.

Julie (wife to Mark 24 w/CF)

 

[buggygurl321]

Hey Lilith
I have to agree with Sarah. I am the mom of a beautiful young woman with CF. The thought of her not ever becoming involved with someone and sharing her life with that someone special breaks my heart. They say it is better to have loved and lost than never to have loved at all. I absolutely believe this to be true. I don't have cf, but that doesn't mean I wont be hit by a truck tomorrow crossing the street. If we only did the things we knew to be sure bets, honey, we wouldn't even get out of bed most days. Have faith in you, have faith in God and have faith that there is someone out there who will want to spend whatever time is possible with you. Love is what makes everything else worthwhile. That doesn't mean you won't have your heart broken once or twice, but honey, we all have. Be more than your cf. You are vital and I imagine you to be poetic and thoughtful.. CF is only a tiny part of who you are. Take good care of you.
Buggygurl's mom

 

[buggygurl321]

My mom's got some very sage words. And she called me a beautiful young woman! LOL. Actually, i do have cf, but I know that i will get married and have kids. I'll just take really good care of myself and hope to always be there for them. in fact, i think that i may already have a boyfriend (i'm not sure, it's kinda weird right now) and i definately have a crush (its lasted for over 4 yrs!!!!) <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">

buggygurl aka katie

 

[anonymous]

Lilith - I can relate to your fears about finding someone that will accept you and your condition. I'm sure you've heard the expression "it happens when you least expect it." That expression always pissed me off b/c I was always expecting it/looking for it!

When I experimented with getting out for the sake of getting out, meeting people for the social benefits, volunteering to help me remember there is more out there than nebs, calories, picc lines, and pills - it allowed me to be more myself (and more attractive to others). And sure enough, I fell in love with someone that I married 4 years ago and who is now pregnant. I encourage you, as Sarah does, to get out and take a class or voluteer. Not just b/c you may meet a future partner but b/c it feels healthy to interact with the world. My experience says so anyway . . . I wish you the best!

Jason 30 w/cf

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: Jason 30 w/cf</i><br>And sure enough, I fell in love with someone that I married 4 years ago and who is now pregnant. <hr></blockquote>
Congratulations to you both! When's the due date?

Lilith, there is more wisdom in these replies to your question than you can find in a library full of books. Living every day fully is such a key concept, and CF being only a tiny part of who you are. You go out into the world as best you can, on your terms, not just to be found or to find someone but to be you. To paraphrase a song I heard somewhere: Love isn't something that you find, it's something that you do.