Fiancee has CF, having trouble coping

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anonymous

New member
Hello, my name is Catie and I am new to this site. I was just wondering if there is anyone that uses this site who is involved with a person that has cf, and if so how they cope with it. We have been dating now since about 8th grade, and we are both 21, but it seems like recently I have had this big fear of death. I don't smother him with it, and he is doing wonderful. Pft's are at 96 :), so that is amazing. But I just feel like everyday that goes by I am getting more and more scared of "the end." His goal is to not die of Cystic Fibrosis, which is good, but I am going to die of fear if I don't figure out how to calm my nerves. Any help would be wonderful.

One breath at a time,
Catie
 
F

Faust

New member
It's natural. With time and maturation of the relationship, you will be much more ok with how things are. The important thing is to just always remember to enjoy every minute you guys have together.
 
J

julie

New member
Catie, My name is Julie and I am married to a wonderful man with CF. I'm 22 and he's 25. We started dating when I was 16 and he was 19 and then we got married when I was 19 and he was 21-almost 22.

Sounds like your fiancee is pretty healthy which is really good but as the nature of CF is, there will likely be complications sometime in the future. I didn't really have people to talk to until I foudn this site about a year ago, but I just sat down and thought about it all one day. I decided that I was scared about the future and sad of what it might hold, and that's ok, it's natural to feel that way. But I also decided that loving him, being there for him, being in a relationship and having a family was more important to me than all those fears so I was gong to just have to work through it, talk to my mom about it, talk to my best friend about it. And now that you have found this site, it's a great place to come and talk about your concerns, get more information about CF (because there is always more to learn, even when you think you might know it all).

He and I also sat down and had a frank coverstaion about a lot of things. Like I could die long before him, I could get in a car accident tomorrow morning or get hit walking across a street. He could get shot walking down the wrong street or eat something he was deathly allergic to. The bottom line that we both concluded is #1, neither of us will live our lives by the limitations that CF could potentially put on it, #2, either of us could die today or tomorrow so lets not dwell on death bur rather enhoy life and try to do all we want (within normal reasonable rmeans.).

Hopefully you find comfort on this site and some friendships as well. I am usually on this site once a day and I also check my email all the time so if you want to talk to a person who is in your shoes, feel free to email me whenever you need to. <a target=new class=ftalternatingbarlinklarge href="mailto:division902@hotmail.com">division902@hotmail.com</a>

<a target=new class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com">www.cysticfibrosismaleinfertility.com</a>
 
A

anonymous

New member
Julie,
Thank you so much for that e-mail. It is really nice to know that there are people out there just like us. I hope you and Mark are in good health. Please know that your letter gave me a new outlook on life, and I really thank you from the bottom of my heart.

One breath at a time,
Catie(fiancee has c/f)
 
J

julie

New member
Catie, it gets better, I promise! If you ever need to talk, just feel free to email me whever you want to. You will find a LOT of support on this board, a lot! There are a few other wives of men with CF on here, some other girlfriends and fiancee's and then some husbands/fiancees and boyfriends of some women with CF. Great place to come when you are feeling overwhelmed AND to share joys and to talk about things not at all related to CF when you need it. This is my favorite place, it's kind of like a family. Don't forget to take care of yourself either!!!!
 
A

Allie

New member
There's nothing I can say that Julie hasn't already, it's tough, but with love you'd be surprised just how much you can get through. WE're always here for you, no matter what.
 
A

anonymous

New member
Hi Catie,

I just wanted to say to you what my fiance says to me - I have CF he does not (I am 23 he is 25). When we talked about how I might have a shorter life due to CF and all the other stuff that will come along with it. He just says that he would rather have me for a short time than never have had me in his life and never have had the chance to love me. I feel the same about him because like Julie said either of us could die tomorrow for one reason or another.
I wish you the best. I am sure you and your fiance will have a wonderful life together.

If you ever want to talk - to a CFer <img src="i/expressions/face-icon-small-wink.gif" border="0"> just email me xiao07@hotmail.com

Lindsey
23 w/CF and CFRD
 
A

anonymous

New member
Thanks everybody! You all have helped so much. David is actually doing his vest right now. Is it like pulling teeth for anybody else for them to do there treatment? he always says "If I feel bad I'll do it." But it seems like the point is to do it before you feel bad. And when you feel bad, you are supposed to do it twice as much. One thing is for sure, he looks like Dr. Octopus when he puts it on. I find that humor really helps when it comes to the subject. Like, an example, if I get a cold or our kittens get a cold, we always joke and say maybe they caught cystic fibrosis. Anyway, I just wanted to let you all know that I am starting to sleep easier at night. Thank you.

One breath at a time,
Catie, 21 (fiancee 21 w/cf)
 
A

Allie

New member
Oh, I used to have to poke Ry with pointy sticks to get him to do his treatments, especially when he had to get up in the morning, and it made him so cranky. He'd do them, but he'd grumble about it like nobody's business. It was like trying to get a petulant four year old to take a nap lol.

And Humor helps with everything. My husband used to always say that with sarcasm and time, anything could be funny.
 
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MOTHEROFACFCHILD

New member
Hey Catie,

I want you to know that you are NOT alone. We just found out 4 months ago that my 3yr old has CF. I'm devastated. All I do is CRY, CRY, CRY. I joined about a week ago & everyone is soooo helpful. Maybe you can let us know some info about your man. Please email me so we can chat. -k- and hang in there.

rema_khoury@yahoo.com
 
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JazzysMom

New member
It is normal to worry. I think in many ways it would be unhealthy not to have some worry. As we get older & defy the odds more I think worrying becomes greater. Unfortunately CF is unpredictable in many ways & so much varies from patient to patient. I think its great that he is doing so well & U need to force yourself to limit the worrying & appreciate what you have now. What ever comes in the future will come whether U worry or not so why dwell on the what ifs. When the worrying interfers in life than its too much!
 
A

anonymous

New member
Hi Catie

What is apparent to me is that you are stressing over something that you cannot control. Stress can lead to sickness. If you get sick you cannot be helping your hubby out any. Be proud that he is healthy. I will say that I knew of many people with CF who had mild cases and eventually they became ill because they never did therapy and smoked drank and whatever else. I hope your hubby is clean in that respect. Doing his therapy to clear his lungs daily will keep him healthy and you happy.
 
A

anonymous

New member
Yes, the teeth pulling with the treatments is awful, and you are absoultely NOT alone. Mark makes up every excues in the book... but I usually win, not without some grumbiling and rolling of the eyes though. I have concluded this part will not ever change, I guess I can deal with nagging him, but trying to disguise it as not nagging.... not really many other options <img src="i/expressions/face-icon-small-smile.gif" border="0">.

You aren't alone in this though! Glad to hear you are sleeping a bit better.

Julie (at my parents house, can't log in on their comp.)
wife to Mark 25 w/CF
 
A

AnnaBegins

New member
Hello!
This is Catie, I started the thread about David. So about him. He is 21, and was diagnosed at birth. His sister, who was born 2 years before him died at 9 months of cf, and that is how they knew David would have it. His Pft's are in the 90's, and he is generally healthy. He plays the guitar and has been playing the piano since he was 6. We have been dating since about 8th grade, and are engaged to be married August 12th. Any other questions just give me an e-mail, and either of us would be more than happy to talk!

One breath at a time,

Catie and David
 
M

miesl

New member
Squee!

Of all the freaky things...

I'm also engaged to a CF man - and we're getting married on August 12.

If you need someone to talk at... Miesl Dru on AIM and miesl_dru at yahoo dot com is my email.

-Michelle (engaged to Jeremy 28/CF)
 
J

julie

New member
Mark and I got married in August, the 17th to be exact. I can't believe this august will be 4 years... WOW

Thats funny, August seems to be the trend I guess <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
A

anonymous

New member
You are definitely not alone on the treatments! A lot of cf'ers would rather not do them...they aren't what I consider "fun"!
But I would absolutely agree to keep encouraging him to do them...very important! Tells him you care, but also keeps him healthy!
Just because he feels healthy (which is great to hear by the way), that doesn't mean he should stop doing them...PFT's in the 90's are great, but to me I would aim higher...some CFer's are in 110's (like myself). I believe it was Vince Lombardi who said "Perfection is not attainable. But if we chase perfection, we can catch excellence." So dont be too satisfied with being better then most...try to be better then "average". <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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