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Posted 6/5/2009 10:04 PM (GMT 0)
Hi, my name is casey - I'm 20 years old and I have Cystic Fibrosis.  I thought I had everything under control in terms of processing and dealing with this disease.  Unfortunately the older I get and the more I have to deal with it publicly...i.e. finding a job and deciding where to eat (smoking/non-smoking) i become more and more frustrated.  I am trying so hard to have patients but the only emotion i know how to feel (thanks to years of dealing with CF) is anger.  I was born with Meconium Illius and then had a blocked bowel removed when I was four.  The doctors totally screwed up my stomach and now swimsuits and tank tops are hard for me to wear because i feel so conciencous of my scar and the deformed stomach.  Swimming, summer clothing, and allowing my boyfriend see it is almost too hard.  I am angry...really angry and i need some help.  Anyone dealing with this?

Casey confused

Posted 6/7/2009 10:04 PM (GMT 0)
Hi there Casey.

I can't say I understand fully what you're going through regarding scars. I do have 2 pretty standing out scars. The one where my portacath was inserted on my chest wall, which is suprisingly noticible 5 years later as I went through some sort of strange healing process, meaning the scar is still red. I had a muscle biopsy done on my right leg 2 years ago, which has got through the same strange healing process, and is brown all along the scar, you can even see where the stiches were still.
However the reason I say I can't fully understand your frustration, is because my scars do not bother me in the slightest. The only time I am ever consious about covering up, is when my portacath is accessed, and even then, I'm not bothered about people seeing the dressing, it's more the line tends to creep "normal" people out when they see it protuding.

None of these things stop me having any sort of relationships or anything with people though. I'm married and my husband understands, and so do most other people. Even if I was in a new relationship, I wouldn't exactly be shy.

I guess though, I can understand to some extent howit must feel for other people with CF. It's just never worried me.


Finding a none smoking resterant I can agree with you on, it is such a pain. Smokers in general tend to wind me up so much, even friends who are smokers. We struggle for breath every day because of things we can't stop or control. Smokers tend to be a law unto themselves-that they have the right to smoke wherever they like,and so what if that means other peoples human rights are destroyed. We're lucky here in the UK, pretty much everywhere has gone smoke free. You still get some inconsiderate pratt, who doesn't really care and just lights up wherever they are, no matter who is around them, in hope they don't get caught. But, it does mean there is no longer the issue of finding out in advance which resterants/pubs are none-smoking.

CF I guess can bug me a lot sometimes. But I think other peoples arrogance bugs me more. I do get very very angry though at times, because it is a sucky illness, and I would just like a break a bit more often than I get it.

Sorry I've rambled on and ranted a bit, but I hope I've helped you feel you're not alone, and never will be.

Hope you're will right now!
Gem x
Posted 7/27/2009 7:19 AM (GMT 0)
Casey, I am 22, and I am dealing with exactly the same thing! all my life I felt like everything was under control, but the older I get the more often I find myself compleetly overwelmd! when I am looking for a job, should I tell them I sometimes go to the hospital, or not? should I stay out late with my friends or get the sleep I know I need to be healthy? I too was born with mecinoum illius, and have the scar to prove it, it stretches across my entire stomach, and is very deep. I have also had a g-tube. I have mediport scars on my chest. letting my boyfriend see me was the hardest part of our relationship, (well, that and the fear that he would leave me the first time I got really sick). sometimes CF makes me so sad I sit down and cry, sometimes it makes me so angry all I want to do is break things. I think the year I was 20 was the hardes of my life, you are really becoming an adult. everything in your life is changing, so of corse the way you view CF and your feelings about it will change, it is starting to effect new parts of your life that you had never thought about when you had just gotten used to how it scrwed things up before. my sugestion to you is to suround yourself with people who want the best for you, the kind of people who will make the disation for you to sit in the non-smoking secion, because they don't want anything to happen to you. be open and honest about everything with the people close to you. as you get a little more meture you will start to get used to it again, you will figure out your limits, and while CF will always get you down and angry sometimes you will learn again how to not let it run your life. you have to remember it is not who you are, just somthing you have, and while it seems to take over your life, it does not change who you are!  it gets better, and then worse, and then better again. I would like to talk to you more about this if you want, but I do not get on this site very often. you can e-mail me at [email protected] if you want.
Posted 11/7/2009 1:03 AM (GMT 0)
Twenty with Cf and it's really getting worse fast. Definitely know what you're going through. Don't think I can even try to articulate it here without being tremendously redundant. If you need someone to talk to I have the time.

But, to your "Is anyone dealing with this?" -- Yes.
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