We are intitled to the same emotions and worries (however trifle they may be) as everyone else. I do not life my life for my CF, I live it for me. I'd like to see this article, because I'm already feeling strong negative emotion about it. I think having a serious illness helps you to sift out what is important to you, and find the rules to live your life by in a quick fashion. I know that when I was in highschool, I often felt isolated (not always in a bad way) from a lot of my girlfriends because I didn't think that some of the same stuff was important. While they were busy trying to be popular, I just wanted to have as many different friendships as possible. there were alot of people that I was close to that they snubbed. I think that I matured faster than them because I had a better grasp on the delicacy of life. But I still worried about the prom, and what my hair was doing. Debbie
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especially for women
- Thread starter scarlett
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We are just people. Having a disease does not prevent you from cringing when you have a huge zit that developed overnight. I agree that we mature faster and have a better understanding of whats important in life, but that doesn't mean we don't worry about what every other woman worries about.
I hop you all don't mind me getting in here today. I just felt I needed to send a message to you. I admire all of you. I am 28 years old (w/o cf) with a sister who is 30 w/cf and a brother who is 23 w/cf. You all probably know my sister Dea. She is one of my best friends in the world. I know she does not like the bloated belly or anything that has to do with her cf. She is a wonderful person as well as the rest of you. My thoughts and prayers are with each and every one of you. I get on the message center EVERY day to see how everyone is doing. This is the first time I have replied to anything. I know you all have different problems with your cf and none of you like it. I don't like to get "mushy" but, here goes anyway, I have never seen any of you (except Dea) and I know all of you can make it through this. You all sound like very strong women. Just by reading what you all have said you are all beautiful no matter how much your belly is bloated or how tired you are. My thoughts and prayers with all of you.Kay 28w/o cf
First of all, let me say how great this is to talk about!!! I have a hard time relating to my peers about body issues, mainly because I am so thin. I've had people tell me right off that they don't like me because of the way I look (retarded or what???). But here's my input for what we've been talking about...my periods are failrly regular, except when I"m sick, and then who knows what's going on. When I get sick I also appear to get yeast infections, which are always fun, right??? About cosmetic issues...I still worry about the same things as everyone else. If I have a huge zit, I'm going to attempt to hide it (I'm 21...it's natural!). One thing that does make me self-conscious are the scars I have everywhere froms PICS and the juglar IV they put in when I was in ICU. That's probably the worst, because it's right on my neck and I feel like everyone can see it. I've also had some mental adjustment issues re: my doc says I can't have children (i'm sure I'm not alone here) which was a major let down. How do you ladies feel about dating? I never know how to tell guys, and I always feel really awkward. Do you wait until things are serious and he sort of needs to know, or are you up-front about it???I could REALLY use some advice about this!!!
<hr><i>Originally posted by: <b>Debbie</b></i> I'd like to see this article, because I'm already feeling strong negative emotion about it. I think having a serious illness helps you to sift out what is important to you, and find the rules to live your life by in a quick fashion . . . . but I still worried about the prom, and what my hair was doing. <hr>Maybe I was a little unclear, but the author feels the same way. While she does worry about whether she is being too vain, in the end she decides that she's completely entitled to pay attention to her looks,and actually gets some chemical peels. She says:<b> " . . . after all the battles are fought, after all the surgeries and days in the hospital, what you are finally left with is the luxury of frivolity."</b>I couldn't agree more with this. Even though in the case of cf it's never over and you're never done fighting, you have to deal with so much that you deserve luxury. It's especially important to me when I'm in the hospital, I always try to look relatively decent and bring plenty of silky pajamas, because these little things matter. I <i> did </i> grow up fast, and yeah, sometimes I judge people who worry about "superficial" things. But I too worry over the little things, at the same time that I face the life-and-death issues. Pursuing beauty is a way of rebeling for me, somehow. It's controlling how I look on the outside when I have so little control over the inside. And it's justifiable no matter how many "real" problems you have or the world has. So girls, never feel bad about wanting to look good. No one can fight something as tough as cf without first putting on her war paint.~scarlett
Oh, I've had so many people up front ask me if I'm anorexic, and had my friends get pissy because I could eat every bite on my plate, and that it was all fatty good food. I think it's kind of funny now, but I must admit it was tough to get used to. As far as daiting goes, hmmm. I was always 100% open about my cf with everyone at my school, and so most guys already knew I had it. In college, all my professors know, and most of my classmates. But in regards to guys, I usually let them know before we get involved, and I do it casually. Usually after a little coughing fit followed by the "Are you ok?" When you tell 'em you have to remember that CF is HEAVY thing, and they will need support adjusting to it. But you also have to be accepting of the fact that there may be some people, who for what ever reason, can't cope with it. It has been my experiance that most guys aren't phased by it, but they look for information and want to know more about it, although I have run into one or two, who get all gooey and want to take care of me for the rest of my life. You meet all kinds.Debbie
i think that having CF just put things in perspective for me - like i said once, bad hair day sucks, but bad lung day is way worse, so i'll take bad hair day anytime. but it's still nice to look good. especially when i was a teen... the zits and other little "gifts"... oh god.to me, it's important to look relatively good [not talking about supermodel-good or beauty-pageant-good, just nice and presentable], because then i just don't look sick. i like that. it's even easier to tell people that i have CF when i look good, because then they are less scared. they see i'm ok and i'm walking and laughing and wearing make-up and cool jeans, and the disease is less scary. i met my favourite music band, HANSON, in august this year, through the make-a-wish foundation, because of my CF. i worked very hard to get my health level up for the trip i made to see them [israel to new-york! 12 hours by plane! i'm a crazy fan <img src="i/expressions/face-icon-small-smile.gif" border="0">], and i looked great, and although the guys from the band knew i'm there cos of make-a-wish, which means i'm terminally ill, they didn't treat me as a sick person, because i didn't look like one. which was heaven. as for dating:i'm a lesbian, i date women, and women tend to be more understanding. anyhow, all my friends know i have CF and if somebody introduces me to a girl, they would often tell her i have CF before she'd even meet me. i'm really fine with that, it saves me talk <img src="i/expressions/face-icon-small-smile.gif" border="0"> if she's someone new, who doesn't know me, i tell on the first date. always. it's a big part of who i am, and i cough on a regular basis, so i cannot - and don't want to - hide it. it's just there and normally there aren't any problems with that. when i was in the closet during my early/mid teens and dated boys, i also told them right away. just having an open approach about that and being willing to talk about it and answer questions, that made it easier.one thing, i always tell people to not look it up in books or online, because (A)it's always scarier on the paper and (B)every CF patient has his/her own problematic stuff and why don't i just tell you what my problem is and that's all, instead of reading about a whole bunch of frightening things that may happen and i don't even have half of them.
I agree with the "tell them not to read things" philosophy. Some of my friends that have the hardest time with it are the ones who know the most about it. My last boyfriend didn't know anything, so I had to warn him NOT TO READ. I used to dread the genetics chapter in Bio because we would ALWAYS talk about CF and I would read things and think "that's not the way it is!!" Textbooks don't always give the nicest pictures, do they?? But my feeling is that if the person is right for you, they will love you no matter what...this may sound simple and naive, but I think it's true. It's worked for me in any case. Honestly, I would say that not that many people around me actually know...sometimes we just don't get around to it! But those who do know know as much as I think they can handle at the time. What do you think? Is the 'some at a time' approach better than the 'here's the whole thing'? It seems to work better for me.
Kay~I just wanted to say that you sound like the sweetest sister. I Its so nice to hear from someone who doesn't have CF, but still has to deal with it. I often wonder what my brother and sister think of me having it, but my sister is still little and doesn't totally understand. I just wanted to say thanks for getting involved by reading the posts because it sure says a lot about what kind of sister you are to get so involved in a disease you don't even have.
Thank you for the nice reply. I would do anything for my brother or sister. If I could change bodies with them for however long they wanted just so they wouldn't have to deal with the coughing, the soreness, the pills and everything that comes along with it, I WOULD!!!! I would not ever wish this disease on anyone. I have seen my sister and brother grow up with this horrible thing and it kills me that there is nothing I can do except be there for moral support. I wish I could do more. I do raise money for the Great Strides Walk with my sister. I started doing that a year or two ago. I try to do what I can. I will help out in any way I can for the rest of my life. I worry so much about my sibblings. My sister has cf related diabetes. It scares me to think that her little body is going through all of this. My brother seems to be doing okay. I do not talk to him as much as I do my sister. I think of her as one of my best friends and if anything ever happened to her, I would be completely lost. I pray for everyone ewith my 2 almost 3 year old daughter every night. We do a nightly prayer for everyone including those with cf and any other disease. I have not had my daughter tested yet, but my sister keeps telling me to get her tested. I just don't feel that it is necessary right now.Keep your hopes and dreams alive. Sincerely,Kay 28 w/o cf
Thanks for that Kay! I know you would do anything you could for me or our brother! Just by helping me raise money is great! I am so thankful for that! Every little bit helps to be one step closer to finding a cure! As far as my niece goes.....I am only looking out for her. I love her to death....and want to make sure she is healthy. I just think is best to know...because there are 2 in the family with the disease already. There is such a high chance that you are a carrier yourself. And even my doctors agree that because she is my niece....she should be tested...just to be safe. I know you dont feel its necessary...although I'm not sure why. It is a harmless test.....and because it is a genetic disease...and 2 already in the family have it....insurance should pay for it. Do it for your daughter......please! Dea 30w/CF and CFRD
Kay, you MUST get your daughter tested. If ANY one in your family has CF, you have a respondsibility to test yourself and see if you are a carrier. It would also be important that if your child doesn't have CF, that she be tested for the gene when she decides to have children. I was diagnosed at 5 weeks of age, but I've met some people who weren't diagnosed until they were three. Their parents had no idea that CF was in the family, but you have that knowledge and there is NO reason to delay testing. I don't mean to come down hard, but what if your daughter is in need of trearment, but shows no symptoms. The test is painless, and simple. And if it comes back negitive, you should still be tested yourself if you plan to have other children. Waiting to take the test won't change the results. Best wishes.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Lizzie04</b></i> I used to dread the genetics chapter in Bio because we would ALWAYS talk about CF and I would read things and think "that's not the way it is!!" Textbooks don't always give the nicest pictures, do they?? <hr></blockquote>in my school, we came across CF when we studied the breathing system in bio. prior to that, my teacher discovered i have it, because i was in the hospital and he drove a bunch of my friend to visit me after school [he was a doll about it <img src="i/expressions/face-icon-small-smile.gif" border="0">] and he asked me if i could do a presentation on CF instead of him talking about dry facts. that was of course only if i felt comfortable with that. i agreed, studied some more about it and did the presentation. it was kind of hard at first, because only my closest friends knew and back then i wasn't the kind of a person who'd feel comfortable delivering a speech in front of an entire class. but i loosened up and opened up and basically shared a lot of things, not only facts and statistics but also the day-to-day experience. it was really good that i did that - people were always wondering why i was coughing, why i was allowed to skip gym without special permission, why i missed school a lot. so they had their questions answered. they were also kind of awed that i actually had the guts to talk about it in front of everybody. this girl came up to me and said that she'd never have the courage, if she were me. also, by preparing and getting my facts straight for the presentation, i learned several stuff i didn't know, so that was good.my good friend did study CF as a part of the genetics theme in bio. it became funny because her teacher messed up at some point and she started correcting her, and the teacher got mad and said "i know better" and my friend said "my best friend has it, i think i know at least something". the whole class hollered <img src="i/expressions/face-icon-small-smile.gif" border="0"> of course, later on she just aced the quiz about it - she knew way beyond the textbook material!
I'm going through all that right now. Just today we did population genetics in bio, and the professor was using cf for her example, saying things like "if you have two of these genes you're dead so you're not walking around" and "none of these people (with cf) reproduce." I didn't think it would be so hard for me to hear all that seeing as much of it is untrue, but I ended up having a really hard time, alternating between wanting to smother my professor and just run out of the room! I don't want to tell the teacher about me having cf because I don't want the curriculum altered in anyway, I don't want her to pity me, etc. However, today she was getting so much wrong that I was thisclose to just blurting out, "I <i>have</i> cf and practically none of what you're saying is true!" I didn't do that, but after I'm through with the course I fully intend to write a harsh letter telling her to watch what she says. My classmates probably think I'm a bit weird because I was laughing at some of the things the teacher was saying - especially when she was wrong. There we were, discussing the big scary super-serious disease that "luckily no one in the room has", and I was practically cracking up.People have so many misconceptions . . . it's hard.~scarlett
Hey Scarlett, I think you might want to consider opening up a line of communication with your profs. I've always told mine in the first week of class so that they know what's up. It makes school so less stressful when they understand where you're comming from, and then you've got less to worry about when you're sick. I have a file at the Disability center at CSU, just because it helps to have people in your corner when you run into the occasional prof who is a jerk about missing class. Universities have rules about meeting needs and CF is covered under the American's With Disabilities Act. It's not that I consider my CF a disability, but sometimes it has to be spelled out that way for some people. You know, I've always believed that it's important that people get the right informantion. Because CF is something that most people only hear about in bio class, I have always made it a point to get the REAL info out there. This may not be your calling, but consider this, you are the expert, not the prof. You have a vast store of knowledge that is useful and worth sharring. You never know how your knowledge might change someone's life. But you may not be ready for this, and that's ok. However, I think you should have a word with your prof. I can almost promise you that he or she has never had a student w/ CF set them straight, and even if you do it and wish to remain anonomous, then the prof can begin getting things right. They won't change the cirruculium, or anything, and may ask you if you are willing to share your experiance. If you're ready, the class will eagerly accept it. When ever I help a friend out with a report, or speak in a class, the questions I get are always about my life personally. But I don't mind sharring. THey are curious and in awe, and always happy to hear from an expert. Consider it, but don't do anything that makes you uncomfortable. by the way, how old are you and where are you in school?Debbie22 yr old w/ CF in CO
I think that by having cf does not make it any different than anyone else.. The same things that everybody gets fussy about so should we. Just bec. we were created with cf and we deal with a lot doesn't meean that we should just be happy that we are alive and not look pretty etc. We should go out and do what ever we need for even just beauty, bec. that's what keeps us going-- being like everyone else.
Scarlett,I completel understand the way you feel. It can be hard to speak up in class, and I also find it hard to tell my profs b/c I don't want pity, and I also don't want special treatment. Understandable. Some of my profs know b/c I've gotten sick and they HAD to know, but usually I don't tell them. I've thought that maybe I should tell them, but I guess I have too much pride and I never do. <img src="i/expressions/face-icon-small-smile.gif" border="0"> But don't worry...I completely understand where you're coming from. Althought it might not be a bad idea to let her know now that she's wrong...nicely, of course. Then maybe she can correct the info. (without naming sources, of course). Just an idea.
To Kay, I am sorry, but I feel I must respond to this. Getting your daughter tested is a very personal decision. And I feel differently than the other person who responded. I have cf and i am 24. I have been very lucky and probably would have gone undiagnosed for many years yet if I had not been "routinely tested" Cf has scarred me emotionally more than anything (up until this point anyway). I can't get insurance, and I feel like I am always hiding something. I have been married for 2 and a half years and my in-laws don't even know. My point here is think it through-if your daughter has symptoms, have her tested...(but buy her lots of life insurance first. These are things we don't always think about) Best of luck to you and your family.Mare
scarlett-seriously, talk to your professor. she's telling such complete bullcrap! she's offending you and who knows - maybe some other student in the classroom knows somebody with cf. and it's scary to hear such things.and i admire your ability to sit still and not lash out at her <img src="i/expressions/face-icon-small-smile.gif" border="0"> i'd be probably throwing a chair at her if i was at her classroom <img src="i/expressions/face-icon-small-smile.gif" border="0">