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scarlett
08-29-2003, 10:57 PM
<b> Hi </b>I wanted to start a thread examining how cf affects you as a female. For me, it ties into everything: sexuality, body image, relationships, on and on. I'm hoping to start a website specifically for women with cf. Ideally it will cover the medical, social, and emotional issues that we face. My idea is for people to post questions they have, and I will then research the answers and put them on the site. So what do you want to know, and what do you have to say? .

Lois
08-30-2003, 02:07 PM
wow, this is an awesome idea! a website!well, there's the issue of antibiotics and how they can make you an yeast infection and dryness. i hear a lot of CF girls/women complaining about it. there's how some girls/women with CF, when they cough, there's a little "dripping". [somebody here in israel does a research about CF and gynecology and she interviewed me and she asked me that, she said some complain about that happening].there's the issue of delayed puberty, how all girls have breasts earlier and periods earlier than us CF-ers, and we all know how that can be frustrating. i think all of CF women can tell a lot of stories about those issues and more...

anonymous
08-31-2003, 01:47 PM
O boy do i know what they mean by " dripping"....... seems as the years go by, and the more i cough the more this happens. It can get to be embarrassing. i just wonder what everyone else does about it?

anonymous
08-31-2003, 01:59 PM
MAKE SURE YOUR LEGS ARE TIGHTLY CROSSED AND THEN YOU CAN HAVE YOUR COUGHING FIT!

scarlett
09-01-2003, 01:50 AM
<b> Thanks to everyone who has replied </b>I can relate to the leakage issue. Doing kegel exercises can help some. Some problems I've had as a woman with cf have been:- people thinking I'm pregnant because my stomach gets so big. strangers often just come up to me and say "when are you due?" or something like that. sometimes I pretend I'm actually pregnant rather than just being embarrassed or having to explain things.- being uncomfortable having someone do pt on me because of my breasts. After I started developing I never again let my parents give me PT. And when a guy does it, it weirds me out.- being the last girl to develop, the last one to get her period, and all that. I was so flat for so long, and then I "blossomed" so late (and quickly) that a lot of people thought I had gotten implants or was faking it.- feeling too sick to put any effort into my appearance, which just makes me feel worse about myself. I always feel better if I bother to put on decent clothes and makeup, but a lot of the time I just don't feel like I can get out of my sweats and brush my hair.- being embarrassed when i have to spit out mucus because it's "unladylike". it's worse if i don't have a kleenex and i'm just walking down the street or something. Sometimes I'll be irrereverant and "spit like a man" (think "Titanic") but othertimes I feel really vulgar.anyone with anything to add, <a target=new class=ftalternatingbarlinklarge href="mailto:[email protected]">please e-mail me</a>. Your input is appreciated.THANKSscarlett

scarlett
09-01-2003, 01:52 AM
sorry about that. my email is: <a target=new class=ftalternatingbarlinklarge href="mailto:[email protected]">[email protected]</a>

Debbie
09-01-2003, 05:45 PM
Oh what a great idea! I'm so glad to hear that I'm not the only one who has these kind of problems. Not like I really thought that I was, but just to have others to talk to is a comfort. It's also helpful to have a backing when I try to explain this kind of stuff to my boyfriend. I love him, but sometimes I feel that he doesn't take me seriously when I say, "not tonight, dear (insert problem here)." It's like the people who are close to us forget we have CF (and I'm glad that I'm a person to them and not a girl with CF) and they don't understand that it really affects every part of our bodies sometimes. I even have to remind my mom sometimes that I'm spitting in public because I have to. It sucks because not only do we have to deal with our own bodies, but having to explain ourselves makes it frusturating. Sometimes I feel like people don't believe me when I tell them stuff, like they think I'm just trying to get some sympathy. And that just pisses me off. CF is hard on all its patients, but I think women have a whole other list of problems that arise because we are women. It's really hard to be an independant and self sufficiant woman when there are times you are in so much pain you can hardly get out of bed. CF takes a toll on your relationships and friendships, work, school. This website is a great idea. Debbie

Lois
09-03-2003, 06:59 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>scarlett</b></i>- people thinking I'm pregnant because my stomach gets so big. strangers often just come up to me and say "when are you due?" or something like that. sometimes I pretend I'm actually pregnant rather than just being embarrassed or having to explain things.- being uncomfortable having someone do pt on me because of my breasts. After I started developing I never again let my parents give me PT. And when a guy does it, it weirds me out.<hr></blockquote>i relate to both problems...i had once somebody thinking i'm pregnant at this party i went to. what's worse was that not only my stomach was swollen but i also had a shirt on that looked like a maternity shirt... and the guy i was with, who's my best friend and gay [!] was thought to be the dad. so somebody approached him and asked him when the baby's due and somebody else offered me their seat... it was frustrating. most of the time though it's frustrating because there are "Flat" days and "swollen" days and it causes an outfits problem. i cannot plan ahead for a date or anything.breasts and chest pt - was a huge problem when they started to develop. i almost couldn't have chest pt because of the aches. and it's very uncomfortable for me when my mother gives me pt. and one time in the hospital when they didn't have a female physiotherapist available and they brought me this young guy - and i was 17, very sensitive age... argh! but i think when it comes to talking about breasts we have a lot to say with no relation to CF <img src="i/expressions/face-icon-small-smile.gif" border="0">

anonymous
09-08-2003, 06:55 AM
I was reading what you said about being bloated and that people think that you are pregnant. I am going through the exact same thing. But I don't know what it is caused from. Do you? I have not always had this problem. At first it would come on for about a day or two and then go away, but now it seems as if its here to stay. So far my doctors have tested my liver, but that was't it. If you could tell me what it is caused from it would be a huge help.<a target=new class=ftalternatingbarlinklarge href="mailto:[email protected]">bloated</a>

Dea
09-08-2003, 02:38 PM
Hi,I'm a 30 yr old female with CF....I also have this same problem! I absolutely hate it! It makes wearing jeans very uncomfortable! When I get them to fit in the waist...they dont fit anywhere else. It seems like I have had this problem for as long as I can remember! Guess we're all in this together heh?Dea

jmazz
09-08-2003, 05:12 PM
I agree with the bloating thing. I have the same problem as drea if i find jeans to fit my waist they are baggin in my butt and legs. I hate to go shopping. As for the vaginal yest infection thing lucky i havent had any much to the suprise to my doctors but i do have topical skin yeast infections which make my skin feel like sand paper and all red. Not the most attractive looking. But after going through 6 different meds my dermatologist put me on diflucan and it cleared up my chest and back and my cf doc and gyno like it cause it will help ward off any vaginal yeast that may pop up now that i'm on zithromax all perminatly. So if u girls are have such problems with yeast talk to your doctor about diflucan as a maintance med. I think to have a site just for us ladies with cf is a wonderfull idea. Cause lets face it men dont understand and never will.

scarlett
09-08-2003, 10:58 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>Dea</b></i>Hi, I absolutely hate it! It makes wearing jeans very uncomfortable! When I get them to fit in the waist...they dont fit anywhere else. <hr></blockquote>This is the type of thing I'm trying to address on my website (which I may or may not ever actually go through with - but I'm really trying to). I have an entire section on how to dress to hide bloat. I've found that low waist jeans fit the best and the most often. The advantage of a higher waistband for me is that I roll my jeans at the top when I have a stomache, and the way they dig makes it feel a lot better (bizarre but true!) On my worst days in terms of stomach size, I tend to go for a cute stretchy skirts with a big sweater, or empire-waisted dresses. I still have no idea how to actually stop the bloating from happening in the first place. I have a rather unusual problem (for CF, that is) in that I can't take laxatives because I'm recovering from bulimia and I used to be addicted to them. I have to get by on less intense methods like citrucel and plenty of fiber. Eventually I think I'll have to accept that I'll never have Britney Spears' stomach and that my little buddha belly is cute in its own way . . . however, I'm talking just a little bit of a stomach, not like the 7 months pregnant look. But for the times when I really do look like a mum-to-be, I've mastered the art of getting people to give me their seats of the subway!thanks to everyone for replying!~scarlett

Lois
09-09-2003, 03:13 PM
going on with the bloating theme---how does it go with you ladies? does it seem to be related to what/how much you eat, bathroom, lung condition? and how long do the bloated phases last?with me it seems there's no obvious indication. i can start the day flat like britney spears and end it looking five months' along pregnancy, but the next day be at my usual again. my usual condition is a little tummy, which i think isn't CF-related but a result of genes, my maternal grandmother was thin and had a great body but had tummy. and it doesn't seem to be related to anything, foods, bathroom, lungs, whatever.

anonymous
09-18-2003, 05:36 PM
There are two reasons I can think of for this problem. If you are not taking enough emzymes you are excreting to much and this causes bloating. The other is a yeast build up in your digestinve system. Try yogurt or acidophillus tablets. The tablets can be purchased at grocery stores.Shannon

anonymous
09-19-2003, 11:52 AM
Hi, I think that a web site for women with CF is a great idea. I have had a lot of problems with women issue so to say. Right now I am to sick to really exercise and I have the bloated look and I hate it. I also hate that I am just to tired to worry about my appearance and that makes me feel bad because I want my husband to be proud to show me off, but I never feel that nice looking right now. I also have the dripping from coughing fits, and this is not an easy thing to deal with. I have also noticed that right before my period I get really congested and my breathing gets whacky on me. Anyway, I wanted to say I think it would be a great idea to have a web site to go to and ask questions about women things. I can't wait to see the web site up and running. Good Luck!!!!Melissa 29 w/CF and MRSA

Lois
09-19-2003, 01:59 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i> I have also noticed that right before my period I get really congested and my breathing gets whacky on me. Melissa <hr></blockquote>i heard that happens to quite a lot of CF women. ladies - how about periods? are you regular? and did you get it relatively early/late as your peers? i'm very irregular and once i didn't have my periods for 6 months, without any apparent reason, and then it just came back. also i got mine very late, at 14 and 8 months when i was already fully developed and my girl friends who were younger had theirs already. and to add to it, my mother started her periods when she was 12. so i was really late.

rmklaus
09-19-2003, 06:37 PM
Hello, I have very irregular periods they I can go 2 months without one and then get one that lasts for about 2 weeks. I had my first period when I was 14 and 3 months. My sister had her first one when she was 12 years old. Just thought I would add my 2 cents. Melissa 29 W/CF and MRSA

anonymous
09-20-2003, 02:54 PM
Hi Melissa, Have you considered Yoga? It has been a very easy way for me to reduce stress and keep fit. You can start very simple, and do it right at home. I study hatha yoga, which focuses more on the streatching and breathing rather than buring fat like some of these modern yoga classes. The breathing can be a little challenging if you aren't feeling well, but it also helps with airway clearance. I do my yoga routiene for about half an hour after I do my pulmozyme. and afterwards, I feel more relaxed and limber. It helps stretch those muscles that you pull during coughing fits, and the best part is that you can taylor it to your needs, and go at your own pace. This is a good website with step by step yoga postures, but buying a simple video is a good start. &lt;www. santosha.com/asanas/asana.html&gt;You ladies with the irregular periods should have the obgyn check you. I know CF might affect your cycle, but better safe than sorry. Perhaps a birth control would help regulate them. I am on the Depo-provera shot and have responded ideally. Also, this type of bc does not go through our digestive system and is less likley to encounter problems, plus you only have to worry about it once every three months! And it is less likley to be affected by antibiotics. If you are bloating, it is most likley caused by enzyme defficiancy, or that they are deactivated by stomach acid. Take tums every day, or have your doctor prescribe an antacid. Also, you may have a CF diabeties issue. <a target=new class=ftalternatingbarlinklarge href="https://www.santosha.com/anasas">null</a>

scarlett
09-23-2003, 09:45 PM
I just wanted to mention that in the october <i> Glamour </i> there is a tiny little blip about a 30 yr. old woman with cf who had a lung transplant. I think it's always good to see cf getting publicity, especially in something so wide-read. <i> Glamour </i> also did an article on Laura Rothenberg a few months back, and in general have good women's health coverage. In the current issue there's a really interesting article by Jamie Weisman about whether a woman with a serious illness has a right to be vain, for example should she be worried about wrinkles or just insanely thankful that she's had the opportunity to age? It was a fabulous piece, I thought . . . Well, I've had my period for almost 4 years and its still highly irregular. I had my estrodile tested and it was normal. I didn't get it until I was 15 and a half but my mom (non-cf) also got hers kind of late. thanks again to everyone who has replied!~scarlett

Lois
09-24-2003, 08:24 AM
<blockquote>Quote<br><hr><i>Originally posted by: <b>scarlett</b></i> In the current issue there's a really interesting article by Jamie Weisman about whether a woman with a serious illness has a right to be vain, for example should she be worried about wrinkles or just insanely thankful that she's had the opportunity to age? <hr></blockquote>that's a really interesting debate topic. how do you ladies feel about that?

anonymous
09-24-2003, 02:06 PM
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

anonymous
09-24-2003, 03:28 PM
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.

anonymous
09-24-2003, 04:08 PM
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

Lizzie04
09-24-2003, 07:14 PM
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!!!

scarlett
09-24-2003, 07:24 PM
<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

anonymous
09-24-2003, 08:25 PM
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

Lois
09-25-2003, 05:29 PM
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.

Lizzie04
09-26-2003, 01:12 AM
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.

anonymous
09-26-2003, 04:50 AM
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.

anonymous
09-26-2003, 12:39 PM
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

Dea
09-26-2003, 01:32 PM
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

anonymous
09-26-2003, 01:57 PM
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.

Lois
09-28-2003, 10:27 AM
<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!

scarlett
09-29-2003, 07:08 PM
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

anonymous
09-29-2003, 11:29 PM
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

anonymous
09-30-2003, 11:29 PM
It's really funny bec. In the morning I could weigh 100 and at the end of the day I could be 106. And this can happen every day! Also if I go to the bathroom i could lose 3 to 4 pounds .! I also feel bloated after eating any meal my skirt gets too tight . It's crazy

anonymous
10-01-2003, 11:00 AM
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.

Lizzie04
10-01-2003, 11:08 AM
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.

anonymous
10-05-2003, 11:17 AM
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

Lois
10-06-2003, 07:38 AM
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">

anonymous
10-06-2003, 05:38 PM
To Mare,My daughter is not showing ANY symptoms. She will get tested sometime in the near future. Thanks for your input. I think my sister has convinced me to get this done. I just hope and pray that the insurance will pay for the testing.Kay 28 w/o CF

anonymous
10-10-2003, 06:24 AM
I am 37 years old and just found this website tonight. As I am technologically challenged, I am not a usual web browser. I have CF and have been very thankful for such good health. In 2001, I managed to pick up pseudomonas (at such a late time in life), and my health has not been the same. I find myself battling things that I have not had to deal with before. Regular CPT and nebulized meds were not necessary until now. I have been having a rough time fitting it into a busy schedule. You know, places to go, things to do and people to see. My biggest heartache has been the infertility issue. I haven't seen anyone else mention it. My husband and I are very anxious to be parents, but it is just not happening on its own. The biological clock ticks loudly these days. I went through the gamut of infertility testing, and went through "intra-uterine insemination" without success. The next step is IVF, and this can be quite costly, even with good insurance. I guess that adoption can be costly too. Anyone else dealing with all of this? Diana

anonymous
10-10-2003, 01:36 PM
HEy everyone, I just wanted to say that this website has been great. I feel like I kind of know some of you just by reading what you write. <img src="i/expressions/face-icon-small-smile.gif" border="0">Debbie20 yr old w/ CF in CO

scarlett
10-19-2003, 02:18 AM
Thanks to everyone who advised me about my little professor issue. I finally registered with the office of disability services at school, so now I have all these letters to give to my teachers. All they say are "she has registered with this office and so she is allowed to stagger assignments and exams and be absent more often." It doesn't specify what I have or anything, but I'm still a little scared to give them out, because I don't want to be treated differently. I'm doing very well in school right now and I like knowing that teachers aren't being easy on me out of pity. So I don't know what to do.Also, Diane,I have worried a lot that when the time comes, I'll have a lot of trouble getting pregnant. My mom had a really hard time (does that make a difference? I don't know) My best friend is always saying, "Oh, when we get older we'll have babies together!" Sometimes I get really depressed, and think, I'll never get hold, much less have kids, but I try to keep reminding myself that even though my psychotic devil of a bio teacher says people with CF don't have offspring, they do!!!! (Yeah, one of these days I am really going to flip out on her). It must be really frustrating to have to go through all this. Anyways, I wish you luck with IVF, adoption, or whatever path you take. Okay, on a separate note: this website idea? Will I ever have the time for it? I honestly don't know, my life is very busy right now. But seeing as everyone has responded so positively, I am going to do my best. But, I need your help! Please, girls, keep on posting anything you can think of. Any info you want on there, please just e-mail me. I want this to materialize, I really hope someday it will . . . ~scarlett~ <a target=new class=ftalternatingbarlinklarge href="mailto:[email protected]">e-mail me</a>

anonymous
11-05-2003, 06:19 PM

anonymous
11-06-2003, 01:47 PM
HiI am a twenty-two year old female. I am currently in college as an engineering major. Do to health complications school is taking me longer than I had expected. But I do plan to get my degree.I have been extremely healthy for the past two and a half years (no hospitalizations needed), and then on Monday I went to see the doctor for a regular check up. He confirmed to me that I had developed CFRD. On top of everything that has been going on in the last month, this has been hard to swallow. I have always kept an extremely healthy diet and exercise on a regular basis. I know that I just have to accept this and learn how to handle it. I'm just wondering how other people are dealing with this.

anonymous
11-06-2003, 03:09 PM
I'm 22, going to school for English and Theater. I totally understand. I was diagnosed w/ CFRD about a year ago. I know it feels like just one more thing to drag you down. It has taken me a while to get through school and I still have a semester or two to go. Managing CFRD isn't too hard at all, when you compare it to other forms of diabetes, and when you consider that missing a dose of insulin isn't going to be fatal. The CF foundation has some literature on CFRD that's pretty straight forward. THe standard treatment at my clinic is to use a few units of Humolog (fast acting insulin) with meals and check blood sugar once a day. I've found it's eaiser to keep up w/ shots than blood sugar. Basically, b/c our pancrease has been a piece of crap for so many years, it's started to take longer to get insulin out when we eat. We still produce it, but it doesn't get out fast enough. The fast acting insulin works until the real stuff kicks in. I've heard of some people needing regular insulin, but I don't know much about it. It takes a few weeks, but you'll see an increase in your energy level, weight gain, and most people's lung functions improve. I have no diet restrictions because of CFRD, but I don't use my insulin if I'll be drinking alcohol. Mind my asking where you're in school? I'm at Colorado State. If you want to talk at all, feel free to e-mail me.Debbie22 yr old w/ CF in [email protected]

scarlett
11-10-2003, 02:59 PM
CFRD is not the same as type I diabetes . . . but of course no one bothered to tell me this. I think it's important to know, however. A lot of endocrinologists don't know much about it. It's less complicated and hard-core medically, but in my experience, it gets really complicated when your pulmonologist and endocrinologist go to bat with each other. I was very underweight when I got cfrd, and the endocrine people told me to watch what I ate, and the CF people were all like "just get as many calories as you can!" and it got very confusing. Today I just have to explain everything to all the doctors. The other thing is, they say there's a direct correlation between how controlled you keep your sugar and your PFTs. So if you go on insulin, your lung function should improve. Does anyone here have the pump? I don't want to get one but I have heard very good things about it. ~ scarlett

CFgirl69
11-14-2003, 12:56 AM
I have a pump I like it's much better then the pen. I hated having the pen tho I didn't mind the shots. I am 16 and found out that I had CFRD a few months ago when I was younger I had CFRD only when I was sick but now I have it for the rest of my life it was really hard and still is.I would love to talk to you about itAlli

Cindo
12-01-2003, 12:48 AM
i am new to cf.com but it's so good to be able to read what you have to say about things. a few very relvant topics for me are the weak bladder muscles (Kegels). Kegels really help me. Any healthy douches or something to get rid of the smell that sometimes happens eg: when you are jumping at a concert or something? And you can't wait to get home and have a shower.Another is the bloating - what the hell is it caused by?????I'd love to get pregnant and am about to head down the road of infertility treatments. I am healthy enough - 2 years no hospitalisations in january - but it hasn't happened yet.....cross fingers not legs!Any ideas on how to get rid of tablet breath? that yukky taste of gelatine that my boyfriend kindly bought up the other day...You have rum breath, it's better than tablet breath. Bugger At least he tried to put it nicely.how about getting rid of that awful smell in your sinuses during an infection - any surefire way besides mints?It's such a good idea to get a website going - i'm going to tell the CF assoc of Australia about your great site and to get more understanding of what we have - between more of us!

anonymous
12-01-2003, 02:26 PM
My boyfriend has mentioned my breath too. It totally embarassed me and I was like, "um, I can't control it and if you don't like it go kiss on someone else." I just gargle w/ listeriene a few times a day. I don't like to chew gum, but I do use those breath strips. It's funny b/c when he mentions stuff like that, I don't think that he considers that I might have a medical reason that's completly out of my control. Once I snapped at him and was like "hey, I don't tell you how nasty your zits are! so just lay off" he immedatly got all red b/c he had a few really big pimples. (sigh)

anonymous
12-03-2003, 01:49 AM
where is the section on dressing for bloated days?

anonymous
12-05-2003, 05:43 PM
Hello ScarlettI think your idea is wonderful and you will have a lot of support. There are many Woman who have CF who have Children and I am sure this group would have lots to share. I am 44 and had a double lung tx eight years ago as of this coming January. I would love to join in your discussion on your new website. I read many of the responses and you will have lots of support. Go for it. Let me know when your site is up and running [email protected] I love Glutathione and what it has done for my health. I have a website on GSH (Glutathione) check it out. Sorry if this is off topic everyone. I have a limited time to share on line these days.http://members3.boardhost.com/Thankyou/.

anonymous
01-15-2004, 03:16 AM
They r going to have to do a dnc and a hysterroscopy I was on the depo shot and had no period for six years.Six months is how long ive been off of it and still no period.im 21 and my health is going to hell.i was standing outside on the back porch and pead all over myself it was so embarrising im lucky noone saw me. ialso have yeast infections once a week one was so bad that i had a rash down my legs and its not diabeties. they have no idea what it is.doyou have any ideas?

buffikins23
01-20-2004, 01:10 AM
I know this is kind of late in the game to post, but I wanted to respond to Lizzie04's concerns about dating...In highschool, I was approached by guys that were real crazy or mad religious...but most of my guy friends did not want to date me because the two people in my area that had CF died. So my friends did not want to get too close. Once I got to college the story changed completely...I had killer legs (worked on getting them shapely through dancing) and I was thin and could eat just as much as they did. I never had a problem with guys wanting to date me, I even invited them to my dorm room when I knew I would be doing nebs and PT(I have a thairepy Vest an awesome thing that allows me to be independent in my chest PT, plus I call it my vibrator) I've been living with a guy for 2 years, been with him for 3.5 years, and occasionally he'll get the question" wow, isn't it hard to love somebody who has a critical illness" and he'll reply simply that,"I love her, I couldn't help falling in love with her no matter what physical illness she may have". And the stomach thing is a bother, but hey thank God for ultra low rise jeans!! Now I can buy my size twos and they fit everywhere without digging into my waist. Let's face it ladies, when we're healthy we're every girls' dream: we don't gain weight from eating a lot, we remain small and thin, and whenever I lift or do anything I show muscle definition right away!! We have to accentuate the positive after all<img src="i/expressions/face-icon-small-wink.gif" border="0">

buffikins23
01-20-2004, 01:23 AM
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i>HiI am a twenty-two year old female. I am currently in college as an engineering major. Do to health complications school is taking me longer than I had expected. But I do plan to get my degree.I have been extremely healthy for the past two and a half years (no hospitalizations needed), and then on Monday I went to see the doctor for a regular check up. He confirmed to me that I had developed CFRD. On top of everything that has been going on in the last month, this has been hard to swallow. I have always kept an extremely healthy diet and exercise on a regular basis. I know that I just have to accept this and learn how to handle it. I'm just wondering how other people are dealing with this.<hr></blockquote>I know what you are going through...I'm insulin dependent and have been for 3 years now. It was devestating, but I found that once I started treating my diabetes my lung function improved and my overall health and energy levels. If you need to talk I'm your girl!! I'm also currently in college and due to get my degree in social work with a theater minor in December of this year!!Bethany 23/f/cf /cfrd

anonymous
02-07-2004, 10:51 AM
I find it very comforting to know that I am not the only one with the pregnant looking belly. I have had a belly all my life and I have never known any other cf's to have this. Apparently fluimucil sachets can help but normal GP's won't prescribe them. It would need to be your hospital chest doctor. All my life people have said when are you due? I can and do hold it in near enough 24 hours a day and i have recently started going to a gym, I will let you know of any improvements! Oh by the way, I have also heard it can be caused by a build up of mucus and the fluimucil sachets help to break it down.

anonymous
02-07-2004, 06:16 PM
Hey I know everyone is different, but I thought I would give my experience with the "pregnant" belly. I never had the pregnant belly look till about 6 months ago. I had just returned to the dorms from being home for the summer. Within days my stomach grew. In fact people used to comment on my big belly (which i did NOT appreciate!), but none of them knew it was CF related. I noticed that I had a lot of gas too. I realized that it may have to do with my enzymes because the dorm food was soooo much more fattening and greasy so my doc agreed to up my enzymes. Within a few days of taking more enzymes (I also took acidopholus, but I am not sure if it made a difference) my belly went back to normal and the gas problems dissapeared. I am sure that is not the only reason our belly gets big, but you guys may want to try to change your enzyme dose or even brands. Good luck with you stomaches<img src="i/expressions/face-icon-small-smile.gif" border="0">!Emily

anonymous
02-07-2004, 07:58 PM
Hi,when I read "fluimucil" i remembered something, and I wonder, if any other woman has this problems.I took fluimucil only two times until now.After taking it for about 2 weeks,my breasts felt swollen and were hurting in motion or when touching them. When I did a test in a special clinic, the doc said, there are water filled parts in there(sorry,Im missing the english word, in german it is:Zysten?!). When I took special hormon tablets for 2 weeks, the problem vanished, but Im quite shure, the reason was the fluimucil and so I dont take it any longer.Uli,41,Germany

anonymous
02-10-2004, 06:58 PM
i remember there was a time when i was taking too many enzymes [i had switched from creon 8,000 to creon 10,000 at the time and didn't juggle it well] and it caused much stomach bloating. it was constant, not like now, when i have my flat hours and my pregnant hours. when i got my enzymes figured out and started taking the proper amount, my tummy deflated <img src="i/expressions/face-icon-small-smile.gif" border="0">of course, it gets bloated here and there, so i just wear low-rise jeans on these days. setting the belly free, as i call it <img src="i/expressions/face-icon-small-smile.gif" border="0"> also, i prefer shirts that are a bit loose around the stomach area, dresses and pants that don't require an ironing-board stomach. but that's also because i like to be comfortable with my clothes and anything too tight just doesn't meet my requirements.Lois, 21 w/CF, [email protected]

anonymous
03-17-2004, 07:36 PM
can you get yest infection from wearing tampon

HeatherB
03-28-2004, 03:09 PM
Hello Everyone! My name is Heather and this is the first time that I have ever used CF.com. Just like everyone else, it does feel so good to know that there are others out there that are going through similiar issues that I am. I am 28 years old and have been married for 2 years. I was diagnosed with CF as an infant becuase I had an older brother who was diagnosed before me. Unfortuantely, he passed away at age 10. I am an extremely healthy CF patient. If I didn't tell someone that I had the disease they would never know. I have never been hospitialized, and don't really suffer from any lung complications. Digestion and my sinuses is where I have problems. I too have a "pregnant looking belly" and suffer from many aches and pains in my stomach. I have sinus infections every month and live on antibotics. I did have sinus surgery a year ago, however no less than a month later I had yet another sinus infection. I do plan on having children very soon. We have been trying for about six month now, but to no avail. I am an elementary school teacher and work out on a regular basis. I am curious to find out if there are CF patients like me who really don't suffer much with any lung complications, just stomach problems?

anonymous
03-29-2004, 03:07 PM
I am a single teen and I am looking for the right girl for me. Iwanted to know if anyone could help me find someone?

anonymous
07-07-2004, 02:11 PM
This is a great conversation! The pregnant belly thing--has anyone tried eliminating milk and dairy products for a few days to see if that helps? It is so frustrating and very much worse pre- period. I refuse to believe that nothing helps this all too obvious symptom!

anonymous
07-07-2004, 05:24 PM
I am 17 w/cf and I plan on having children someday, not in the near future though. A lot of you are talking about being infertile though. I know most men with CF are, but I did not know that women really had a problem, other than the mucus down there being thicker. I want to hear from a woman that has CF and kid(s). How long did it take you to become pregnant and other things like that. I know 17 is young to think about children, but I just want to be prepared for whatever CF throws my way. Also about the pregnant belly look, I have that problem too. I don't really tell anyone about my CF and people make fun of me and tell me I need to do sit-ups and stuff. It hurts my feelings. I guess I don't talk about it b/c no one in my family does. My mom gets mad if I talk about it. My brother, 16, also has CF. We haven't had a lot of problems. I have never been in the hospitol, but I am pretty much always on antibiotics. He was in the hospital 9 times as a baby, all before he turned 2. He doesn't really have a lung problem, his is mainly digestion. My problem on the other hand is respirtory. I have not had a problem at all gaining weight, my only problem with my digestion is the bloated belly. I started my period when I was 12 and developed pretty much the same time as my friends w/o CF. Before some of them. Also, I do not know anyone in my area, besides my brother with CF. If anyone is from MS or anyone that wants to talk, email me at [email protected] Sara 17/CF

anonymous
07-07-2004, 05:29 PM
I also get yeast infections every now and then. I do not think they are caused from tampons. I am on Tobi, 28 days on 28 days off. I had one when I was on Cipro and something else. I have never got one when I was on Tobi though.

HollyCatheryn
07-08-2004, 04:41 AM
Kegel exercises, like they teach in childbirth classes. It helps, but I still have to make sure I am well-flexed before I cough, or risk it.

HollyCatheryn
07-08-2004, 05:15 AM
I have had very irregular periods ever since I got mine at almost 15. I have been known to go as long as 6-7 months without a period. More usually it is 6-10 weeks between and then pretty light. The only time I was regular was for about 6 months before I became pregnant. But even then, I skipped a period before I got pregnant (so my due date was really screwed up). My daughter is a little more than 2 yrs old now, she still nurses - yes, I breastfeed. I breastfed her exclusively until she was about 14 months old and she started getting interested in what was on my plate. I normally have trouble gaining weight or keeping it on, but I was able to gain 30 lbs during my pregnancy. I lost it all nearly immediately. It seems to me that getting pregnant was the best thing for my health. I've only been in the hospital 2 times in over 3 years which is way better than before (usually 2 times a year). I've tried to learn to chart my fertility signs, but I'm having some trouble with the mucus consistency. I suppose that is to be expected. I had no diabetes during my pregnancy even though I've had diabetic reaction to other things in the past. I wonder about other women having breastfed their babies. What about being pregnant with multiples, I know one lady has twins and another has triplets!Also, what aboutport placements. You know, most of the guys get theirs right under their collar bone, but that always seemed yucky to me for a girl. I've had my two in more hidden places (under my bra line on the left side and on my right side even with my nipple below my armpit - I like that one better).What about dealing with dark circles under your eyes during a sinus infection. Sorry to ask so many questions in one post. Thanks for the GREAT topic, Scarlett.Please get that website up and running. We need it and I'd refer everyone in my clinic. Let me know if you need help and I'll see what I can do.

anonymous
07-08-2004, 05:40 PM
I posted earlier and said my e-mail was [email protected], but it is [email protected]

poohwcf
07-09-2004, 07:12 PM
just out of curiosity did you do anything in particular to get pregnant? my question goes to Holly.marisol 23w/cf

anonymous
07-10-2004, 06:01 AM
SOOOO happy for this topic!I'm 28 w/CF. Diagnosed at 6 weeks. Older sis had CF - died at age 7. No one else in the family has it. I've been married 3 years this August. No children. I stopped working a little over a year ago and went on disability so I could concentrate on my health. I do not have pancreatic insufficiency that causes me to need enzymes - I do have cranky intestines, though.Anyway - here are my comments:a) TESTING: if anyone in your family has CF but you don't, and you have kids - test them right away. My sister wasn't diagnosed until 2 or 3 years old because the doctors kept saying it wasn't CF (even though my parents thought it was). I got tested right away - to be blunt - I'm still alive, she is not.b) SCHOOL: all of my teachers knew I had CF - they had to in case I had a coughing fit or problem in class. Also - I'd come to my first class late, often, because of treatments or coughing. No one minded. I never received special treatment other than being able to come in late or being allowed to go out in the hall or bathroom to cough. Never did they act like they pitied me. They never went easier on me. c) EDUCATE: Regarding those CFers and their family members who don't talk about CF - I used to hate talking about it because I was embarrassed, my parents, however, felt comfortable talking to people about it. One day my Dad said - how else will people be educated? So now - I get frustrated when I hear CFers aren't comfortable talking about their disease - it's important to talk to people about what you are going through. Also - how on earth can we expect to raise money for CF research if you aren't talking about it???!!! I encourage all of you to educated as many people as you can about your disease. If you have a biology teacher talking about CF and not giving the right info - either tell them in class so the students don't go off with the wrong info, or tell them after class privately so they can bring it up the next day. Breast cancer, AIDS, etc. all get an incredible amount of funding - why? Because people are so aware of the diseases. Let's get CF as "popular" as those other diseases!d) BELLY: I hate bloated belly. I have it right now. It makes it hard to breathe because it's pushing on my diaphragm. Most of the time - I have a nice 6 pack from all my coughing, but for some reason, and I have no idea what sets it off, I get bloated belly for long periods of time. I mean - I can go from wearing a size 2 pant in the morning, and needing a size 10 in the evening. It's depressing. I have no suggestions as to how to dress nicely and still have this (other than wearing control top panty hose), especially when you have to wear a fitted evening dress for a special occassion and it looks like you are 4 to 6 months along... I tend to wear a drawstring pair of pants on my bad days - the drawstring sticks out and the waistband is gathered a bit because of the drawstring, so it kind of camoflauges that my belly is actually what is making it stick out! I have also noticed that I have a tendency to hold my belly like a pregnant woman does (putting her hand on her belly and rubbibng it slightly or whatnot) when I'm having my bloated days. I think it's just out of the want to be pregnant <img src="i/expressions/face-icon-small-smile.gif" border="0"> It's kind of a weird thing I don't often realize I'm doing.e) BEING FEMALE: I often don't feel womanly. I feel like a walking laboratory between the crap coming out of my mouth and the crap coming out my other end <img src="i/expressions/face-icon-small-smile.gif" border="0"> between all of the meds I have to talk and all of the breathing machines next to my bed, between having to LOOK at what I cough up and poop out, having to assess my health everyday. Plus - I hate the fact that we have to cough up mucus through our mouths - why on earth would my husband want to kiss me?! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Not to mention bad breath from sinus infections and just plain being sick. But, other times, I feel darn sexy. And still other times, I'm not breathing well enough to be intimate with my husband. When I cough in public - I feel like the most disgusting person in the world. When I have to cough up into a kleenex in front of people - ugh. How to cope with this? Well - now I try to find it intersting - as in, hmmm - my cough sounds tight today, or - my sputum tastes saltier today, or - hmm my poop is an interesting color, I wonder what I ate that caused that, or, I'm having difficulty breathing - what set it off? So now, I'm trying to hear every little thing my body is telling me. I recently got assessed for lung tx and found out my body is VERY healthy and strong, except for my lungs. So it made me realize - my body is working darn hard to keep me going - so I better appreciate it. I've now viewed my body more as a machine that I'm in charge of - and I now appreciate that happens with it. f) BOYS: I never had trouble with boys - I always dated people I knew through friends or that I was already friends with - so they'd know. It'll come up on the first date when you're talking about yourselves. Don't be afraid to mention it - and don't worry about what to say - THEY will ask the questions. Every guy I've dated has been amazing with my CF - they've found out as much as they could and helped me with my meds. The onlly trouble I had was some of them would feel like they couldn't control the disease, so they'd try to be more controlling over me. g) LEAKAGE: Peeing when I cough - I always used to use pads meant for your period - this never worked real well. I finally started using pads that were meant for this sort of thing (like Poise or Serenity). WOW - they are amazing! I just use the extra strength panty liners and boy can they hold their pee! And - no smell! I highly suggest using these. And of course - cross your legs or try (if you are sitting down) to kind of use the heel of your foot to "plug up" that area.h) YEAST INFECTIONS: I get yeast infections all the time from my meds. Diflucan is awesome. Also - I get it in my mouth - and the Mycelex Troches work great (they also work for when you get sores in your mouth from inhaled steroids like Azmacort). I've noticed that the typical dosing for Diflucan (100mg, for one day) doesn't work that great - you can take up to 400mg in one day - I recommend (talk to your doc of course) that if the 100mg pill doesn't clear it up after 24 hours - try taking 2 pills the next day - that usually does the trick. First thing I request when I'm going on IV antibiotics is enough Diflucan to run the course of the meds.i) CHILDREN: I am still coping with the fact that I'm not going to have kids. My docs said it wasn't the best idea for me, and I've decided adoption also won't work because kids are always sick and they will bring those colds home. When I have my transplant - I'll be on meds that lower my immune system - which will make it all the worse if I catch all of their colds. Also - I barely have the energy to take care of all of my health stuff - I don't see how I could spare anything for my child - who I would want and need to give 100% to. I still think about it, and I'm hoping there will be a cure soon or something will happen that will make it safe for me to have kids...in the meantime, it's really depressing when family members or friends have children - I love kids and would give my arms and legs to have one with my husband.j) FRIENDS: I've been open with my friends and they've all been great. But - I have pretty much opted not to have friends - I don't know anyone my age who is married, so everyone my age seems to only want to go out and drink and stay out late - I can't drink and I don't want to stay out late and I don't want to be in a crowded bar inhaling smoke. Plus, I just feel I don't have much to offer - I don't work anymore so I don't get out much. I've had to stay in my apartment for the past year without going out (up until recently) because I was avoiding cold season and I was ill....I finally talked to my friends about it and they said I had lots to offer and not to worry about it, and they all understood me not wanting to go out to party, so they work with it. I still don't socialize with them much - I've become a hermit. I don't like it. It's also hard because I don't work anymore, and they all do. So during the day - it's really just me. Luckily, and oddly, my Mom's friends meet me every after noon to do chest physical therapy and help me exercise (they are nurses) and I get along with them SO well. I think everyone is right - we mature faster - so it makes sense that I could get along with 50+ year olds better than girls my own age!k) EATING DISORDERS: I suffered anorexia for about 10 years, an bullemia for a brief period. I found out many CFers go through this. It's mainly a control issue. Eating is one of the things related to our lives and our health that we CAN control so it is actually not suprising to have an eating disorder. My advice is that - we do a heck of a lot better with more weight on our bones. My PFTs went up dramatically and I stayed off IVs for a long time once I put on weight. I still tackle these issues. Especially with the bloated belly thing. But - as I said before - my body is working so hard for me, I need to treat it as best I can. It deserves it.Ok, now that it is 1am, I'm signing off now. Feel free to email me - though I do suggest everyone try to put their thoughts here and not just email them to people so that those women visiting this site can read through all of our thoughts. Anyway - you are all amazing people, and it's fascinating how alike we seem to be. Not only in our symptoms and problems, but how we deal with what is going on with our bodies. We are not only marvels, we are marvelous! (ok I just came up with that and my only excuse for being such a nerd is that it's 1am, though I can't use that same excuse all the time). Blech, my belly is bulging over my underpants. Soooo sexy. <img src="i/expressions/face-icon-small-smile.gif" border="0">Love to all of you,[email protected]

anonymous
07-10-2004, 06:39 AM
A few more:l) CLUBBING: I've always had mild finger clubbing, but I've noticed it's gotten worse this year - clubbing does get better and worse depending on infection. My rule of thumb has always been - no nail polish (which is handy because I use a pulse oximeter daily and it doesn't read correctly through nail polish) or light colored nail polish, and keep them short (which is also good because long nails tend to harbor bacteria). But - if it doesn't bother you - than don't worry about it. Guarenteed the only people that will notice your clubbing are other CFers. This is because fingers and nails come in all shapes, heck - my husband's fingers look almost like they have clubbing because he's dropped things on his nails (hammers and things) so much!m) VOMITING: I puke when I cough. Sometimes it's bad, I'll puke all over the bed. Sometimes it won't even need to be a hard cough. I've heard there are ways to cough so as not to cause you to puke - one respiratory therapist suggest putting a pillow against my belly...I don't know if this works or not - but certainly I don't carry a pillow with me in public or in the car (driving is a whole different issue - between puking and peeing when I cough!!). Anyone else have experiences with this?n) STEROIDS: I've taken steroids a few times in my life. Once, when I was in 5th or 6th grade - I was on them for a year - this was terrible - I got so fat and hat that moon face thing - kids were SO mean to me. It was scarring. I've kept those scars with me, unfortunately. Now when I'm on steroids - I try to avoid going in public. Luckly I will only be on them for about 30 days. I know with the lung tx I'll be on them constantly. My husband said he never noticed my last moon face or the fact that I was bloated - ahhh love is blind.o) MORE PEEING: I drink a lot during the day, thus, I wake up every 2 hours during the night to pee. It's annoying, but there is nothing I can do about it. Women tend to need to pee more at night anyway. Anyone else deal with this?p) THROAT CLEARING: When I have a sinus problem or it's just a phlegmy day - I clear my throat - a lot. It sucks when I'm in a movie theater or someplace there is quiet and there I am breaking the silence with my lovely throat clearning. My parents tell me to drink water to help, but it only helps while I'm actually doing the drinking <img src="i/expressions/face-icon-small-smile.gif" border="0"> Anyone have quick cures for this?q) MORE BELLY: I think it's because I swallow mucus - but my belly makes some fascinating and LOUD sounds. I can't burp (for some unknown reason), but my belly makes really loud bubbly sounds that sometimes keep me up at night because the bubbles go up my throat and aren't real comfortable (it's not acid reflux though). They are embarrassing too - I used to hate test days during schools because my stomach would make such noises. Any thoughts?r) GAS: I go through periods of lots of gas - I did especially in high school. Luckily, my friends would feel comfortable to let one go around me - so I didn't feel as bad. Nowadays, I keep myself regular and "cleared out" by having prune juice or prunes or dried fruit everday - big help. I try GasX and all that stuff. I've heard coated charcoal pills can help greatly...s) MARRIAGE: I have been married, like I said, for almost 3 years. He's been great - his familly has been amazing too - they've all offered to be donors if I need a living donor for lungs. They've called the CF Foundation in their area to get more info, they give $ to the CFF as well. I couldn't ask for better in laws. My husband has been great with it to - it's just a matter of training. For example - when I cough at my parents' house - they automatically get me kleenex. So I had to teach him that when I cough - to try to get me some Kleenex immediately. Or, on those hard cough days, something to puke into. He knows all my meds and what kind of pee pee pads to get me from the store. He doesn't complain when I puke on the bed - he just balls up the comforter so we can clean it. I've puked on his clothes before and he didn't care - we got a good laugh out of it. I've peed in the bed, peed in public...we just kind of get a kick out of it and laugh. He doesn't find my excretions un-sexy. The only issue we've had is that when I'm in the hospital - he tends to throw himself into work and doesn't visit as much as I'd like (granted - he still visits almost daily). One day he said - I work more when you're sick because that's all I can do - I can't help you, so at least I can bring in some more money for us. I finally told him - you being here for me does more than any of my medicines. That did the trick - plus, last I was hospitalized, I was hooked up to a heart monitor that was in my room - and when he went to hug me, my pulse dropped (I am always tachycardi) from 120 to 100. Now he has proof that I'm healthier with him around! He also told me this week that one morning while I was sleeping, he cuddled up to me, and could feel my heart rate immediately slow down. Ahhh... love.t) TACHYCARDIA: Anyone else have this? At rest - I'm excited if my heartrate is 105, it'll often be 115. It's always been this way, sick or not. We always figured it was my medications. My doc says though that my heartbeat is REALLY fast (as in not as fast as other CFers I guess). They did studies on my heart, though, it found it was strong as a horse, so I think it's just my body working extra hard to keep the rest of me going strong (as I said before - we found out that I'm darn healthy aside from my lungs - my aterial blood gases were absolutely normal!). We've tried changing my meds, but of course I'm always going to be on bronchodilators (I also have asthma).u) WORKING: I worked since I was 16, held full time jobs and followed a great career after graduating from college. As I said, I went on disability a little over a year ago. Anyway - I brought up this topic just to let you know - for those who want to work but can't work other than from their home - I've just started a course for Medical Transcription. I have heard that you could do it from home but never believed the hype. Finally, I asked my Mom, who is the CEO of a hospital, if it's a real job. She said yes and encouraged me to talk to a career counselor. So, I met with one, we talked about it, she showed me some of the coursework and helped me get in touch with schools. I wanted to do a course either via correspondance or internet - so I found one through my counselor, ended up earning a scholarship to take the course - and I've been truly enjoying it. I've met other people who do this from home and they do make a comfortable living from it - a lot of stay at home moms do it, and there is actually a big calling for people who do this. Anyway - just wanted to let you girls know it's a job option. I actually plan on, once I've done it for a year or so, beginning my own transcription company, and helping people with disabilities get trained for it, find sponsors to set them up with a home office, and get them jobs doing it. Ok - I'm really signing off now! Sorry for such long postings - I just thought if I shared everything I was going through - maybe I'd find out that some of you had the same problems. Plus, I like to share my experiences with other CFers so we can learn from each [email protected]

anonymous
07-10-2004, 06:52 AM
Ohmygosh! It's almost 2am. I swear this is my last posting for the night! You are all probably sick of hearing from me at this point.Anyway - a couple more I thought of:v) HAIR LOSS: Anyone else have this? I have VERY thin hair (didn't when I was younger), I noticed it start coming out a lot in my early 20s. Now, I have basically areas so thin they are pretty much bald. I always thought it was my meds but my docs said no and no other person had complained of this. I finally found out Atrovent (Ipatropium Bromide) can cause it. Anyone else have hair loss issues? I'm trying to pinpoint if it's medications, health, or what.w) BREASTS: I have none. This is mainly family related - my aunt seems to have gotten all the breasts in the family. The rest of us are very limited in that area, I'm probably even smaller than I should be because of CF. Anyway - I hate HATE bras. I hate anything that constrics me around my chest. I don't need bras really (except during my period when they are a bit bigger, but even then I don't wear bras), so I wear a tank top under my shirts. Anyone have other solutions to getting around a bra but not just having one's nipples out there under your shirt for everyone to see? The tank top method works ok for me but sometimes it feels a little bit bulky. x) DRINKING: I avoid alcohol like the plague - it makes my airways irritated, makes me cough immediately, and dries me out. I highly suggest CFers don't drink because it is really really really bad for them. I went through the typical teenager phase of partying - but got over it. Now, even a sip of champagne makes me wheezy. This is actual normal - even nonCFers have trouble because alcohol sucks out the fluid from your body. I always put up on the CF boards that we all need to drink lots of fluid. The recommendation for a healthy person is at least 64 ounces. I drink double this and I can't tell you how much this has improved my health. My parents always told me to drink but I'd be happy if I had two bottles of water in a day. Now, I drink the equivalent of 6 or 7 water bottles a day (not just of water, I include juice and tea and things like that). This helps flush the crap out of my lungs that my mucus can't get out because it's too thick. It keeps my kidneys healthy too. It helps with constipation. I also feel better. I don't suggest drinking all of this in water because it can actual cause problems. Try mixing a little salt or some juice in your water to help it "stick" in your system. Or, drink Pedialyte or Gatorade cut with some water, etc. Also - I personally avoid soda - it causes severe bellly bloat and gas. I get so bloated it pushes on my diaphragm and causes it to be hard to breathe. So - if you notice you don't feel great after having something bubbly to drink, trying going without soda to see how you feel.Alright, I'm going now. Sadly, I still have a treatment and exercise to [email protected]

anonymous
07-10-2004, 07:08 AM
So I lied...y) REAREND: I get hemorrhoids. I get yeast infections. I have trouble "cleaning up" down there on those cranky intestine days...I highly recommend using Preparation H wipes. They come in tubs or individually wrapped for your purse. They feel very nice and they help when you can't quite clean everything after having the runs or something like that, and they really help when you get hemorrhoids from having to over wipe. Plus - when you have a yeast infection, that entire area can itch, and it helps soothe the area.z) PERIODS: I got mine at a normal age. Other than when I had eating disorders, I have gotten them every month. They do get off schedule quite a bit, however. Where I'll get them two weeks apart or something like that. Anyway - I know women have mentioned it, but I'm trying to pinpoint at what time it happens - I know our lung function changes at some point during our cycle. I think mine is when I have PMS - like the week before, and somewhat during. I once read in a magazine a breakdown of the weeks of our cycle - as in week 1 we'll have bloating, lethargy, etc. Another week girls have lots of energy and feel great, another week we'll be pimply and greasy and gassy, etc. Anyone ever worked out their lung function and their cycle? I'd be interested to know. Woohoo - I made it to Z! Seriously need to go to sleep now. 2:06am!!!! That reminds me - what to do for those dark circles CFers get under their eyes? Make-up doesn't do anything for mine. Anyone try creams or something? I did find that Murad Vitamin C undereye cream helped quite a bit, but didn't get rid of them. It probably lightened them by half, sometimes more, sometimes less. It did make my eye area look healthier. This also reminds me - I once brought up a topic here about weird allergies from being on lifelong antibiotics. I'm allergic to an soap (including toothpaste, shampoo, body soap, etc.), cinnamon, mint and flouride. I developed these in my early 20s. [email protected]

idajune
07-23-2004, 08:30 PM
Well Piper that was a lot of info, and interestingly there were many things I related too - some made me laugh and some made me wince. I wanted to share with you how I hide the dark eyes. If you wear makeup, that is, I use - I believe is it Physician Formula - a tube that is green on one end and flesh colored on the other end, green first then flesh, then cover with regular makeup, is works great for me, but a little green goes a loooooong way. It also is great for covering all blemishes. In movies they put cucumbers on their eyes - I wonder what that does?Hey, I have a question, if you ever read this post again. Do you do the Vest or other type of treatment, or do you have people clap you? Just curious!

anonymous
07-25-2004, 05:13 AM
Sarah - thanks for the tip about the Physician's Formula! I'll probably pick up a tube next time I'm at the store. As to your question about my chest PT - I have good old fashioned clapping done 1-3 times daily, one session lasting one hour, the other two sessions are fairly short. I do have a Vest at home but never got great results from it - but my clinic just told me last week that it's not necessarily going to make me cough - it's just supposed to open up pus pockets (mmm yummy). So, I'm supposed to start using that twice a day for 30 minutes each time. I also just had an Acapella device ordered to do 1-3 times a day. Also, a woman just gave me a Percussionator (a handheld vibrating thing) which I use during my one hour long clapping session. Oh - and during my clapping CPT, the person who does it used to use a back massager on me to help loosen things up before I got the Percussionator. I also have an IPV breathing machine that I do my nebs on which acts like an internal Vest. I also have the Flutter that I use from time to time. So - basically - I'm shaking through most of my day now <img src="i/expressions/face-icon-small-smile.gif" border="0"> I do a heck of a lot of exercise too. [email protected]

anonymous
07-26-2004, 06:48 PM
I would like to comment on that:I will be 31 tomorrow.....and thank GOD I have had the opportunity to age. I think those with a serious illness realize how precious each day is and who cares about the little things like wrinkles...or a bad hair day! I know I dont! Just my opinion....but I am thankful for my life!Dea

anonymous
07-26-2004, 11:00 PM
Oh Piper. I am sitting here thinking I wished I lived near you. Most of what you were saying I relate to, especially being married, people our age not being married and wanting to party all the time, being a hermit and having not that many friends. We could be great hermit friends together...lol....OH and do you also visit a site called CF2Chat?I think you put a lot of great info out there. Email me sometime. [email protected]

anonymous
07-29-2004, 04:36 PM
Amanda,I'm sending you an email right now <img src="i/expressions/face-icon-small-smile.gif" border="0">Piper

kybert
07-29-2004, 04:40 PM
someone should make a beauty page for cfers lol. tips and tricks for the sick person!

anonymous
12-26-2004, 11:55 PM
<img src="i/expressions/face-icon-small-wink.gif" border="0">

MidnightShowK
01-02-2005, 03:42 AM
Wow Piper...I'm only 16, but it's nice to hear that you've found a great guy like that. I really believe I have, even at my and his young age. I'm not saying we're getting married, but I've found a guy who accepts my problems..even those nasty ones..like the nasty nasty coughing during movies haha! He's moving though soon, but luckily to the place I'm moving in a couple years..I guess this is the test, hu?

I didn't know some of the things that happen with me were related to CF, like hair loss? I used to have pretty thick hair, but my mom noticed (since she's a hair dresser and cuts my hair) that it's gotten thinner, and I do pull a lot out throughout the day. And the yeast infections! I'm tired as crap of those. I stopped taking Advair because I had an infection pretty much all of the time. I know, I should just suck it up, so I'm going to start it up again, because whenever the nurse goes through my meds and asks if I'm still taking Advair and I say "yep", I feel this surge of guilt go through me. I'm not taking what is appearently a really great drug, and when I get sick (like I am right now) I feel like I didn't do all I could.
Somethings you mentioned I didn't know would be a problem! Now I'm afraid haha, but oh well.
But the main thing that I related to was the belly thing...I've aaaalways had a big belly. I mean, I was born a stick figure except for this huuuge belly! I looked like a pregnant baby... it looks better now since I've filled out and all, but I always will have a big stomach, along with the big barrel chest. I'm still waiting to accept this. I tell myself everything I can. On somedays I feel like "Hey! who cares?? Whoa re you trying to impress? You're you, so be F-ing proud of it!"...but then I see every other girl my size (which is a nice size) with these flat, NORMAL stomachs, and small "rib areas" (lol) and I get depressed about it. Thats the one things I've wanted forver...a flat stomach...won't happen, so like I said...I'm waiting for that feeling of acceptance haha

Well guys, I'm out...love you all, and stay strong, cause even though we may not be normal, we've got eachother to lean on and share our annoyances with (=

anonymous
01-03-2005, 10:42 PM
hi..i too have the bloated belly..when i wake up its perfectly flatand i love it. then by the end of the day i look like i'm ready to pop out a kid..why?!?! this drives me crazy..my doctor has no real answer other then "well, thats CF" so whats a girl to do..i am pretty thin other wise..i have no waist and usually buy the low rise jeans..good luck all you big belly girls..i'm right there with ya!

anonymous
01-04-2005, 01:55 AM
this is craziness! this belly thing!....i get it all the time, and ill ask my family if they see it, and theyll be like 'no not at all youre crazy'...but i think they say this so not to make me feel bad to tell the truth...but i knwo the truth!...i dont have a 'pregnant belly' all the time, deff more before my period time, and on random times! and after i eat w BIG meal...i always make sure to wear my bigger clothing when im going out to eat so i can 'grow' into my pants haha (wear stretch pants and all or a skirt!) i think i own 3 different sizes in my closet,2,4, and 6...depending on my day i see what i fit into! weird huh?...well i never knew this belly thing wasnt just me!, its common in other CFers
what u found most interesting though, was the peeing in the pants/coughing and peeing a little...omg always happens to me!!...but a lot less now , i think its because i havent coughed too hard lately and maybe yoga has helped it too?...all i rmemebr was in the beginning of yoga, when i just started, id have a little pee come out and now never!....yet when i get into those coughing fits, esp when i was younger...putting ur heel/foot into that area to 'clog' it really helped!
the low rise jeans? see i LOVE low rise, and i never realized y, and i think i know y...the belly!!....see when u have low rise jeans it makes it look more like its muscle somewhat, ...i just bought s GREAT pair of jeans! tight on the legs (bc always hard to find jeans that fit my legs, butt and waist!....and this pair, tight ont he legs and fits the butt...and a bit big/comfortable on the waist (and its low rise) so that when i eat a big meal its awesome i have soo much room to 'grow;
and i took can go from 120-125lbs in one day, throughout the day depending on the time of day!....most of my weight is due to excersise--trust me girls its works!! build muscle and u can gain a lot of weight...and if your shy of coughing at the gym (which when i dont feel well i feel this way, or ive felt this way too before i joined the gym as well) i have done taebo in the house, w a video! and OMG the first 5 minutes i couldnt get through it i couldnt breath, and now i can do an hour!! (took me a good yr i think to get ot that though) try it!...ok i think im going to go to bed now, soo tired! and the more i sleep, the more i find the better i feel!! the less sleep, the worse i feel!!
k well this is sooo cool, great forum we got going on here
19 girl w CF

scarlett
04-27-2005, 08:29 PM
I've been away from this board for a year and am so impressed and delighted with how this topic has grown!! As it says in my first post, I started this thread because I had this dream that there could be a place online for specific problems faced by women with cf. Then real life intervened, and I could barely get through my classes, much less design and maintain a web site! Yet I so appreciate that everyone has taken the time to participate in this discussion. Let's keep it going.

I am awed by Piper's ABCs (Does anyone know if Piper still reads this board?) Especially this one:
<blockquote>Quote<br><hr>v) HAIR LOSS: Anyone else have this? I have VERY thin hair (didn't when I was younger), I noticed it start coming out a lot in my early 20s. Now, I have basically areas so thin they are pretty much bald. I always thought it was my meds but my docs said no and no other person had complained of this. I finally found out Atrovent (Ipatropium Bromide) can cause it. Anyone else have hair loss issues? I'm trying to pinpoint if it's medications, health, or what.<hr></blockquote>Unfortunately this happens to a lot of women with cf. I have been losing hair and have asked in other online communities, and many other gals said their hair had also gotten significantly thinner as they grew up. I have lost a ton of hair this year. I just got blood drawn on friday so my thyroid can be checked. I was using Garnier fortifying products and it was still falling out like crazy; now when I wear one braid it's the thickness of what 2 used to be. My hairdresser said my hair wasn't breaking, which meant it had to be coming out at the roots.

In general, the most obvious reason why women with cf lose hair is because of a vitamin defienciency. But if you aren't malnourished (I'm not), it might be a medication issue. My doctor said it could possibly have to do with taking flovent, advair, or pulmicort (I'm not on any of those, however, so that's not what it is for me.) Has anyone tried anything for this? I really hope there is something up with my thyroid so I can get a quick fix (but then again, this is cf. when is there ever a 1 pill solution? wishful thinking, huh) If not I'm totally looking into rogaine.

<b>if anyone knows what I can do about this, let me know!! </b> It's very distressing (dis-tressed, I guess you could say. ha ha) I hate it so much!!<img src="i/expressions/face-icon-small-mad.gif" border="0">

anonymous
04-28-2005, 03:29 AM
I am a 20 year old female living with CF, and yes, it's hard! It does effect every aspect of life. Constant coughing causes all sorts of questions, which I'm not shy about answering, but when your infront of a hot guy and your explaining that your not "normal" a lot of times it turns them off. Guess they aren't worth the hassle than. Apperance is probably the hardest thing. From the outside you can't tell I have Cf, but I'm significantly small for my age. I'm 5'1 and 97lbs. I don't think I look young, but to everyone else who sees me and doesn't know, I range anywhere from 12 to 18! I have no real womenly curves. Small boobs, small butt, practically no hips or thighs. Most women say they'd kill to look like this, but no, they wouldn't! I can't even find pants that fit me I'm so small. I still fit in kids clothing. I don't get asked out very often and it hurts. I look at celebrities and know that I'll never have a body like that. I've also sort of got the whole "rounded" chest thing going on, which makes me very self concious.<img src="i/expressions/face-icon-small-blush.gif" border="0">

anonymous
04-28-2005, 03:38 AM
I am 20 years old and I have always hated the way my body looks. For one, I hate my chest. I am not sure but I have really not gone through puberty with my breasts. My nipples have not changed, so it looks like a little kids chest. I have my period and I grow hair and everything else but just not the breast thing!!! I am wondering what I could do to make them develope? The next thing is my barrell chest! I hate it so much! I am 5'3" and am 100lbs so i am pretty small everyone says, which i have a self esteem issue about my body and thinking that I am fat!!! But the whole barrell chest makes me feel fat... I live in hawaii so yah it is swimming suit season all year round and I hate the way i fit into a swimsuit. I need some boobs, a butt, and toes that look normal not like big thumbs or frog toes!!! Anyways, if there is anyone who went through this or has any info on the none development on breasts and what I could do to make them develope that would be greatly appreciated!!!

Cariann 20 w/ cf cfrd mrsa