24 year old man engaged to a "CF'er"

[ericandcarey]

I am twenty-four year old man living in Tacoma WA, and my fiance has cycstic fibrousis. We've been together now for almost two years and living together for almost a year and a half. I got out of the Army last summer and have been going to college for the last year while working private security. She is on disability through social security, and we're putting off getting married because she will loose her health insurance if we go ahead and do it.I've been troubled by a number of issues concerning our relationship, and it all came to a head this last week. The first major incident was after a endoscopy and a colonoscopy she got last week to try and determine what has been causing some serious stomach pain she's been having. The doctor had no real new information for her and only recommended a different version of a drug she's been taking for it. I had already been under a great deal of stress because of some problems I'd been having with my class schedule and this I think brought me to the point where I physicaly passed out.This inicident was followed-up by an emergency room trip Easter Sunday because of the same stomach problems. This ER trip is one in many that we've taken over the last two years covering problems from bladder and urniary tract infenctions, stomach pain caused by cysts, and whatever digestive problems are causing the latest stomach pain. For awhile, I though she might have a prescription drug problem; however, I feel pretty confident anymore that isn't the case.I was up for a late night job interview and couldn't sleep when I'd gotten home. I had been going over time and again our relationship and whether or not I could continue to handle the excessive ER vists, her in bed in constant pain some days, etc etc. I let it slip how concerned I was when she asked me why I was so figidity, and we almost came to the point where we were ready to break off our engagment and go our seperate ways.We've resolved the issue for now and decided we need to get some help. I've decided to drop out of my college classes for the quarter so I can focus more on taking care of this problem. I would like to find a local support group we can meet with together and counseling the two of us can afford; if anyone's got some advice or info on that, I greatly appreciate it. I also just need to hear from other people right now who've been where I'm at and how you got through it.

 

[anonymous]

Reading your post made me think about how brave those who come into our lives and love us are. Those that aren't family. CF is a heavy thing. ANd I'm sure you know that it can be very up and down. I don't personally know of any support groups for CF in Tacoma (I'm in CO), and getting several CFers in one place is discouraged beacuse of infection. If she is at an acredited CF ADULT clinic, they should have a social worker who can help direct you. If you guys are really looking for a group environment, try looking for a non-specific group for chronic illnesses. Try calling the CF Foundation office nearest to you (find it on cff.org) and see if they know of any groups. Stay strong and take it one day at a time.Debbie23 w/ CF

 

[AbsintheSorrow]

You can ask her CF doctors, I'm sure they'll be able to direct you to a support group. And I can only guess how tough it must be as the fiance of a CFer, because in all honesty, I'd rather be in my place than in my boyfriend's... or yours. But if you really love her, I imagine you'll find a way to stick through it. It's probably a real bitch, but just remember, obviously, it's a bitch for her too. Likely, if I had to guess, I'd say she needs you. And the prescription drug problem, you have to realize... when it comes down to it, I suppose all CFers have prescription drug problems... in that our lives depend on all sorts of medications. But, stick through it, because I'm sure she's worth it. We CFers tend to be pretty rockin' people.

 

[anonymous]

hey,i kinda know how you feel.my boyfriend has cf and well i didn't know anything about cf until i got with him. we're with each other a long time now and things are going great, his health is ok but i do think alot about our relationship and whether i could handel all the hospital visits as he starts to get older and things start to progress. obviously it looks like my boyfriend isn't has sick as your girlfrind (and i hope she's feeling better soon) but that doesn't make it any different i still think about the future and whats going to happen and is it all worth as it might be me thats going to get hurt in the end(but i try not to think about it and concentrate on now).then i felt terrible for even thinking like that about ending a relationship just because he's sick.at the end of the day i love him and i'm here for him and to support him. i'm not totally in the same place as you but just thought i'd write a reply anyway. good luck with what happens and if you's love each other and are there for each other and its suppose to work it will i promise. Oh and i think seeing someone to try and work things out would be a brilliant idea.C ya

 

[anonymous]

I have to ask, what kind of foods is your girlfriend eating? Do you guys eat a lot of greasy fast food? I wonder if she would try to eat things that she doesn't normally eat for a couple of days if this would help and if that does help, then maybe your Dr could recommend a diet for her?? Maybe you could talk to your Dr about what she's eating & if they think that could be part of the issue?I know when I eat somthing greasy (fried chicken) or spicy (sometimes pizza), it makes my stomach hurt, and on top of that, the grease goes right thru in the same form that I consumed it, and that isn't fun either (sorry to be gross, just trying to help).Just an idea. I sure feel for her and her stomach pain, bless her heart.I'll say a prayer for you both. God Bless<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Hi, my name is Amanda and my boyfriend has CF. I am 24 and he is 33. His health is really good so I don't have to worry too much about frequent ER visits. What is hard to accept and live with is that I need him as much as he needs me. You have to remember that no one is guarnteed anything in life,, especially a life span. You never know you could be in an accident or get cancer or many other things could affect your health. With loving a CFer at least you know what you are up against. Everyone deserves top be loved, including people who get sick a lot. I know that the odds are that I will outlive him but that doesn't stop me from living everyday with him to the fullest. He is very supportive of me, I am a full time student and don't work, because he knows that the best thing for us is for me to finish my doctorate. When I am done he can take all the time he wants to do whatever he wants in life. It is like a trade, he takes care of me now and I'll take care of him later. He is the greatest person I have ever met. Believe me I know how scary it is when they are sick. Waking up at night when there are coughing fits, making sure he takes antibiotics when he is sick, doing to the doctor regularly, and all the normal everyday worry. Not only that but you have to sacrifice a lot to make the lifetime committment to be with a CFer. We will never be able to naturally conceive children, I will most likely have to be alone later in life with out him, and everyday life can sometimes be hard. The things that make me feel better about the situation are that I tell everyone I can about the disease. I try to get more awareness of what he lives with everyday, I also do fundraising for the local CFF chapter. We live in Tampa and our chapter is great. The more I do things to help other people with the disease the easier it is to know that people are working very hard everyday to find a cure. I know that if I ever need anything all I have to do is call the CFF and they can help. It feels good to know that I have their support. I also love these massage boards. I hope that you can work through your relationship worries and I hope your girlfriend gets better soon. Good luck and if you ever want to talk just e-mail me at ASander6@tampabay.rr.com.Amanda

 

[anonymous]

My name is Ben. I'm 26 yrs. old. I have been married to my wife, Jen, for 4 yrs. The first thing you need to understand is that this marriage will not be "normal". This commitment will be much more than just the usual "I Do". There will be times that she will be so sick, she can't even get out of bed. You will have to be the one who makes sure that she gets all her treatments, meds, CPT, etc. It meens alot of sacrifice on your part. However, if you can handle the responsibility, there is nothing more wonderful than to be married to someone who never takes a single day for granted. Every moment is special. I have slept on hospital couches too many times to count. I've walked away from previous engagements just to go to the hospital for the weekend. I've been up countless nights helping her through home I.V.'s. That's just the tip of the iceberg. Understand that I'm not trying to discourage you. You just need to know, or have some idea at least, what you're getting into. But you should know that I would not trade a single day. We have been through Hell and back, and I wouldn't hesitate to do it again. Pray. Listen to your heart. Don't rush in. And understand that no matter how hard it get's on you, it is 100 times worse on her. Be there for her. She will need a bestfriend, as well as a lover. I wish you both all the best.

 

[AbsintheSorrow]

I just want to thank all the people who have posted here. That includes whoever it was that posted the question in the first place. I am constantly teetering between two extremes when it comes to my boyfriend. I'm either telling him to leave, before he gets any more attached, and go find someone who will live as long as he will... Or I'm hoping to no end that he'll stay with me. When it comes down purely what I want, I want him to stay. But I'm always wondering if it would be better for him to leave now. Either way, the fact that this question was posted was helpful to me, and now also the responses. I made him read the last response earlier today. I want him to make sure he knows what he's doing. And the post earlier made me feel better for more than one reason. He never really hears any CF input except from me, so when he was reading someone else's account of their loved one with CF, I think it registered. But it's also lovely because he said he much identified with the CFer not taking any moment for granted. He had never told me this before, but he's noticed a lot of my little quirks and indentified them as me living life in the here and now. He said he understands the extra problems involved, but that he does love the fact that I never take anything for granted. He said it's a whole new experience to be with someone who always appreciates even the littlest of things. And he said all of this with this odd smile on his face, that I haven't really seen before. But it made me melt. So I guess I'm just thanking everyone for their input, even though I didn't post the question. It helped me. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[zeeannie]

24 year old man engaged to a "CF'er"

I live in Tacoma and my daughter has CF. I'm assuming that your fiance goes to the clinic in Seattle? Well, recently I found out that the clinic down here is starting a once a month support group. It may be related to pediatric CF'rs, but if you'd like I can get the info for you and you can check it out anyway. Let me know.
zeeannie@gmail.com

 

[zeeannie]

24 year old man engaged to a "CF'er"

I live in Tacoma and my daughter has CF. I'm assuming that your fiance goes to the clinic in Seattle? Well, recently I found out that the clinic down here is starting a once a month support group. It may be related to pediatric CF'rs, but if you'd like I can get the info for you and you can check it out anyway. Let me know.
zeeannie@gmail.com

 

[zeeannie]

24 year old man engaged to a "CF'er"

I live in Tacoma and my daughter has CF. I'm assuming that your fiance goes to the clinic in Seattle? Well, recently I found out that the clinic down here is starting a once a month support group. It may be related to pediatric CF'rs, but if you'd like I can get the info for you and you can check it out anyway. Let me know.
zeeannie@gmail.com

 

[zeeannie]

24 year old man engaged to a "CF'er"

I live in Tacoma and my daughter has CF. I'm assuming that your fiance goes to the clinic in Seattle? Well, recently I found out that the clinic down here is starting a once a month support group. It may be related to pediatric CF'rs, but if you'd like I can get the info for you and you can check it out anyway. Let me know.
zeeannie@gmail.com

 

[zeeannie]

24 year old man engaged to a "CF'er"

I live in Tacoma and my daughter has CF. I'm assuming that your fiance goes to the clinic in Seattle? Well, recently I found out that the clinic down here is starting a once a month support group. It may be related to pediatric CF'rs, but if you'd like I can get the info for you and you can check it out anyway. Let me know.
<br />zeeannie@gmail.com

 

[Faust]

24 year old man engaged to a "CF'er"

To be brutally honest, and I'm sure others on here will freak on this opinion...I can fully understand someone being self centered, or whatever you want to call it, and not getting involved with a CF patient. I think many healthy partners wouldn't get involved with us if they knew in the begining after what they know what comes along with us after they have been with us a while. In a way it's kind of selfish for CF's to expect people to be other wise. Thankfully (or regrettably, depends who it is)we are emotional creatures and after we fall in love we are more or less locked into it. It took my girl a couple years before she didn't freak out and cry while in bed about how unfair it will be when I die way before her, etc etc.


And my above description isn't really targeting CF's who some would consider "mild", or whatever, but it still does apply to some extent. The same general problems will surface, it just depends on how long and to what extent. This issue is the biggest reason I never wanted to get married. Growing up I was told quite a matter of fact like, that I would never see the age of 20. And then 25, and 30. When I was an adult I just said screw it, i'm going to have fun and never settle down. Maybe sell all my belongings and go into porn or something.

Of course life didn't work out that way, and I have a wonderful lady...But I don't think we should expect everyone to be as selfless and down right masochistic as many of our partners must be, and stay with their CF partner.

Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.

 

[Faust]

24 year old man engaged to a "CF'er"

To be brutally honest, and I'm sure others on here will freak on this opinion...I can fully understand someone being self centered, or whatever you want to call it, and not getting involved with a CF patient. I think many healthy partners wouldn't get involved with us if they knew in the begining after what they know what comes along with us after they have been with us a while. In a way it's kind of selfish for CF's to expect people to be other wise. Thankfully (or regrettably, depends who it is)we are emotional creatures and after we fall in love we are more or less locked into it. It took my girl a couple years before she didn't freak out and cry while in bed about how unfair it will be when I die way before her, etc etc.


And my above description isn't really targeting CF's who some would consider "mild", or whatever, but it still does apply to some extent. The same general problems will surface, it just depends on how long and to what extent. This issue is the biggest reason I never wanted to get married. Growing up I was told quite a matter of fact like, that I would never see the age of 20. And then 25, and 30. When I was an adult I just said screw it, i'm going to have fun and never settle down. Maybe sell all my belongings and go into porn or something.

Of course life didn't work out that way, and I have a wonderful lady...But I don't think we should expect everyone to be as selfless and down right masochistic as many of our partners must be, and stay with their CF partner.

Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.

 

[Faust]

24 year old man engaged to a "CF'er"

To be brutally honest, and I'm sure others on here will freak on this opinion...I can fully understand someone being self centered, or whatever you want to call it, and not getting involved with a CF patient. I think many healthy partners wouldn't get involved with us if they knew in the begining after what they know what comes along with us after they have been with us a while. In a way it's kind of selfish for CF's to expect people to be other wise. Thankfully (or regrettably, depends who it is)we are emotional creatures and after we fall in love we are more or less locked into it. It took my girl a couple years before she didn't freak out and cry while in bed about how unfair it will be when I die way before her, etc etc.


And my above description isn't really targeting CF's who some would consider "mild", or whatever, but it still does apply to some extent. The same general problems will surface, it just depends on how long and to what extent. This issue is the biggest reason I never wanted to get married. Growing up I was told quite a matter of fact like, that I would never see the age of 20. And then 25, and 30. When I was an adult I just said screw it, i'm going to have fun and never settle down. Maybe sell all my belongings and go into porn or something.

Of course life didn't work out that way, and I have a wonderful lady...But I don't think we should expect everyone to be as selfless and down right masochistic as many of our partners must be, and stay with their CF partner.

Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.

 

[Faust]

24 year old man engaged to a "CF'er"

To be brutally honest, and I'm sure others on here will freak on this opinion...I can fully understand someone being self centered, or whatever you want to call it, and not getting involved with a CF patient. I think many healthy partners wouldn't get involved with us if they knew in the begining after what they know what comes along with us after they have been with us a while. In a way it's kind of selfish for CF's to expect people to be other wise. Thankfully (or regrettably, depends who it is)we are emotional creatures and after we fall in love we are more or less locked into it. It took my girl a couple years before she didn't freak out and cry while in bed about how unfair it will be when I die way before her, etc etc.


And my above description isn't really targeting CF's who some would consider "mild", or whatever, but it still does apply to some extent. The same general problems will surface, it just depends on how long and to what extent. This issue is the biggest reason I never wanted to get married. Growing up I was told quite a matter of fact like, that I would never see the age of 20. And then 25, and 30. When I was an adult I just said screw it, i'm going to have fun and never settle down. Maybe sell all my belongings and go into porn or something.

Of course life didn't work out that way, and I have a wonderful lady...But I don't think we should expect everyone to be as selfless and down right masochistic as many of our partners must be, and stay with their CF partner.

Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.

 

[Faust]

24 year old man engaged to a "CF'er"

To be brutally honest, and I'm sure others on here will freak on this opinion...I can fully understand someone being self centered, or whatever you want to call it, and not getting involved with a CF patient. I think many healthy partners wouldn't get involved with us if they knew in the begining after what they know what comes along with us after they have been with us a while. In a way it's kind of selfish for CF's to expect people to be other wise. Thankfully (or regrettably, depends who it is)we are emotional creatures and after we fall in love we are more or less locked into it. It took my girl a couple years before she didn't freak out and cry while in bed about how unfair it will be when I die way before her, etc etc.
<br />
<br />
<br />And my above description isn't really targeting CF's who some would consider "mild", or whatever, but it still does apply to some extent. The same general problems will surface, it just depends on how long and to what extent. This issue is the biggest reason I never wanted to get married. Growing up I was told quite a matter of fact like, that I would never see the age of 20. And then 25, and 30. When I was an adult I just said screw it, i'm going to have fun and never settle down. Maybe sell all my belongings and go into porn or something.
<br />
<br />Of course life didn't work out that way, and I have a wonderful lady...But I don't think we should expect everyone to be as selfless and down right masochistic as many of our partners must be, and stay with their CF partner.
<br />
<br />Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.
<br />
<br />

 

[Sevenstars]

24 year old man engaged to a "CF'er

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.</end quote></div>

Hmm, I've now determined why I am single. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

(Way to necrobump a 4 year old topic here btw)

 

[Sevenstars]

24 year old man engaged to a "CF'er

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Too bad we all don't start out on a first date and tell the truth with "Hi I'm more than likely going to die much younger than you, and my life is/will be a living hell due to all my medical/emotional needs, and in turn yours won't be that fun either...Wanna get serious?". Imagine if we were that honest with each new prospective mate.</end quote></div>

Hmm, I've now determined why I am single. <img src="i/expressions/face-icon-small-tongue.gif" border="0">

(Way to necrobump a 4 year old topic here btw)