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Dea
06-06-2003, 02:08 PM
Sean,Im just curious.....do you have CF? If so, what kind of complications do you have from it? Do you realize that a baby born today with CF can live a long and normal life. Even see a cure in its lifetime! I feel sorry for you in that you have such negative feelings. I am a 29 yr old with CF and will be 30 this year. I am thankful for every day that I am here. I dont look at the negative things about CF....I think about the positive things in my life! And I can give you a big long list of the ways that CF has now affected me as I have grown older! Anyway...it is too bad that you feel the way you do!Dea

anonymous
06-06-2003, 04:41 PM
I have CF and I know the pain and discomfort that comes with it. If my parents had known that they were both carriers, they would never of had me. My life is hell every single day! I would kill to keep someone else from experiencing my pain and discomfort. (do you know what its like not to breathe you stupid retard?)Don't ever talk to me againSean

Nichole
06-06-2003, 08:52 PM
I can make a big long list of all of the reasons that I hate living with cf, but I'm not going to. I think denial is a necessary part of dealing with the disease. Granted, I don't know what it is like to not be able to breathe, I have been fortunate to have had great health most of my life. But I do know what it is like to not make the team because it isn't worth while to sub someone every five minutes, and I know what it is like to see my grades decline because I can't make it to school everyday. It's frustrating and it is hard on most everyone with the disease.It is also easy to blame poor health on specific things outside of the body. For Sean it was the vest, for me, I blame my declining health on taking too many honors courses in high school. I mean, at least this way I have control over my cf, right? Well, not exactly, but it's another thing that helps us deal. Staying happy is half the battle. When your mind is positive, then you feel more healthy. That is just the way it works. And it is hard to stay happy with cystic fibrosis, I know. I hope your day improves, Sean.-Nichole

Drea
06-06-2003, 10:00 PM
Sean,I'm sorry you feel it is necesary to hurl insults here on this forum. Calling anyone a "stupid retard" is both unkind and unnecessary. I am sorry if you are in pain, but that is no excuse for nasty behavior. If you would have read all of Dea's post you would have seen that she also has CF, so, she does have an idea of what you live with every day. I hope you aren't offened, as I don't mean to offend you. We all deserve to be able to post our opinions AND have our opinions respected. Andrea

anonymous
06-07-2003, 07:16 AM
I agree with andrea, we should all be able to freely express our opinions. Choices like having children when you have CF are very difficult and full of pros and cons, but i dont think anyone has the right to make a judgement on someones personality based on their opinions. personally, i would not be able to justify MYSELF knowingly bringing a CF child into the world, but that is a personal opinion, definitely not the only route of thought. CF is a horrible disease, but you just have to try and stay positive, and do what you feel is right. without judging and condemning others.

anonymous
06-07-2003, 06:04 PM
Sean, I, too, know the frustration and pain of living with CF... not a day goes by without thinking about it- especially when you can't even tie your own shoes without getting short of breath. It takes as much mentally, as it CF takes physically, to fight to stay positive. I have bouts of feeling like "I got screwed" - more than I'd like to admit frankly- but I need only to look around me to see how many folks who aren't as blessed as I am. Probably not the right method of acknowledging all that God has given me, but it certainly works in a pinch. Rather than take offense at your choice of words, I simply choose to acknowledge that you're in alot of pain... etiquette is, perhaps, the first thing to go when you don't feel well (as in "I don't care what others think"). This is an excellent forum to vent your frustrations, as most of us share similar experiences. But it can only work for you if you don't alienate the very same people who make themselves available to you. I most certainly hope that tomorrow is a little better than today, and may you feel just a little better with each passing day. And remember, those of us here don't say "...ewww gross, that's just nasty!" when we hawk up loogies (because we already know it) ;-)Peace Love and Good Happiness Stuff (S.Vai circa 1990)

anonymous
06-07-2003, 10:25 PM
Sean I pray for you and hope you find a way to make peace with the hand that has been dealt you in this life. I truly believe mental outlook has an impact on physical well being.. I hope your mental outlook improves, for your health and others who have to deal with you.Take care Kathi

jmazz
06-08-2003, 07:02 PM
Sean, I to wont have children because of the ramafictions of CF....even if i would be able to carry a preganacy. I still wouldnt be able to give a child the attention it would need ....i see how upset and confused my sisters and nieces and nephews get when i'm sick i couldnt possibley do that to a child of my own. As my mother decided to have more children after me i too prayed to god that they wouldn't have Cf and i prayed every time my sisters and brother had their children. I dont want anyone i love to have to go through this although i'm a very positive person i also see the realitys of Cf and how horrible it can be, not just for me but for the people who love me because there is nothing they can do. However others with CF feel the need to have children and thats their right. I think u're heart is in the right place but u just cant express it well. I hope that u can find some peace with the CF and i hope that u have all the good health as possible. If u ever need to talk to someone feel free to email me. My ear is always open.

Lizzie04
06-09-2003, 02:20 PM
Sean,I am a twenty-one year old college student, and my CF hasn't been particularly easy. I've been in the ICU for two weeks and after that my right lung collapsed in two places, yada yada yada. Needless to say, it has not been fun. But I don't think denial helps. This is part of you, just like your eye or hair color, and the first step to living with it is to adapt to it. If you try to ignore it or fight against it it won't work. So I think you just need to be really proactive and do everything you can to help yourself. I know how tough it is, and it's hard to be motivated sometimes, but I think that life is too wonderful to be lost in bitterness and self-hate. Maybe you should talk to someone at your clinic? I did, and it really helped me out. But you're not alone (even though you may feel that way!! I know I do sometimes!!), and I'm sure that there are people who will help you through this. BTW, how old are you? Just wondering. God bless.

anonymous
06-09-2003, 03:48 PM
Sean,To answer your question...I do know what it is like not be able to breathe. As I said before...I will be 30 this year and was diagnosed with CF at just a few months old. I have had my lungs collapse several times as an infant. I dont think it is fair for you to be calling people names for posting their opinions. Actually, think it is very immature. Just wondering how old you are. I not only have the respiratory problems, but I have other complications as well. Again, I want to say that I feel sorry for you and that you have such a negative attitude about those of us who express our opinions. Take Care.Dea

anonymous
06-09-2003, 08:49 PM
Dear Sean-I just stumbled across your post (along with the several others attached to it). Maybe because I also have a son with CF who also happens to be named Sean, I felt compelled to post a response. Your statement about that your parents "wouldn't have had you if they had known they were carriers" really struck a maternal nerve in me. Life (with or without CF) is full of surprises. There is no way to ever predict it. There is also no way ever to "perfect" it. Instead of looking at life for what it isn't or shouldn't be, you should look at it for what it is and can be. Yes, I will never know what it is like to have CF and deal with the many issues you do every day. BUT, I DO know what it is like to give birth to an amazing person who happens to have CF. And I also know what it is like to wake up every morning knowing that he is in my life. I would not trade my Sean or his CF for anything in the world. I consider him one of my greatest gifts. Yes, I worry about his future, but I also do exactly the same for his two sisters who don't have CF. Life is precious no matter what package it comes in. I hope you find a way to enjoy yours.Katrina - mother of Sean (w/cf), Carolyn (w/o cf) and Allison (w/o cf)

Mandaberrie
06-10-2003, 04:24 AM
Hey Sean,I hope you read this. If not oh well... I know excatlly what you go through man. I considered sucide many times but I am glad I didn't. Yes stuff still sucks but I deal. Its realy hard but I try. At one point I didn't try for a while. But regret it now. I know you are probably thinking that I am full of bull and what not. But I tell no lies. If you want to talk to someone one on one talk to me. [email protected] I won't push anything down your throat. Just talk or vent whatever. put in the subject something like this is sean or cf stuff. so i know its you. hope to hear form youamanda

anonymous
06-16-2003, 08:01 PM
Sean, I am the mom of two teenagers with CF. My son is 18 and my daughter is 15. They were diagnosed three years ago. I did not know that their father (whom I am divorced from) or myself were carriers of this disease. Heck, I never heard of it before three years ago. I don't know, nor will I ever know what you are going through or feel like. I can't even know how my own children feel, but I know how I feel. I know how much more appreciative of life and of having kids I've become. I don't take my kids for granted....I feel grateful for every day I have with them......Hey sure I think and worry about their future. My son who is the oldest gets really depressed sometimes. ( he has been on antideppresants in the past) and he always tells me that he doesnt look to the future, that he can only live in the moment. I guess I can really understand that when I think about if I had to put myself in his shoes. Suppose one morning I woke up and the drs told ME I had an incurable disease, but they didn't know how long I would live.....could I handle it? I would be devasted as an adult to learn it.....I can only imagine how you feel at your age. I will keep you in my prayers Sean, you need some additional support....can you get that from your parents?...school?...the clinic. Please find it from somewhere....if you can let someone here know and maybe we can find the support in your area!!!!