This is a response which I had to make easier to find.

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AbsintheSorrow

New member
I was originally going to put this post as a response to the last message in the "Comments on the Real World Cast Member." But as I kept typing, I decided I wanted it to be easier to see, so I'm posting it as a new topic. Here goes. Some people make it seem as though, because we're different, we should hide underneath our covers and never let anyone see. Anyone that ever asks me about it, I will volunteer any information they like (if they have a real curiousity). People see my surgical scars, and I explain what they're for. In the summer, I wear a two piece bathingsuit, fully aware that my port is almost impossible to miss. Anyone that has the sense to ask about it instead of just sit and stare, I explain it to them. Often (especially with people my age), I will encourage them to touch it if they like. When I'm on IV meds and out in public, I will stand in the street, or a store, or sit in a chair right in my classroom... clean the line, flush it, hook up my meds. If people ask, I explain to them what's going on and what it's for. First of all, and most importantly, the more CF gets out into the public where people know about it, the better off we all will be. Secondly, CF is not a weakness. Sure, it sucks, and it dibilitates, and it kills. But do I think of it as a weakness and something to hide from the public? Something to be ashamed of? Absolutely not. It sucks, but as my boyfriend has pointed out time and time again, CF is a big part of why I'm me. CF is part of why I'm bossy, and can stand up for myself in any given situation. It's why I'm more compassionate to people who have any troubles. It's why I grew up faster, and learned more. It's why I'm so interested in medical information. It's why I live for each moment. It's why I love Mike to the extent I do. It's why I can't wait to start a life with him. It's why my Mike quit smoking. It's why I'm not ashamed of being me. It's why I'm so outgoing. I imagine it has a big deal to do with the fact that I don't give a damn what people think. I'm my very own person, and I think I kinda rock! It's why I'm a sarcastic smartass, and wiser than my years. And damn straight, I think I'm a better person than I would've been without CF.
 
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ozgal2001

New member
Fantastic Post ! I pray one day My daughter will be like you !! your right not enough people really get out there and make Cf known. I have raised money for cf data in adelaide , raised money for the ward. It's hard society is so small minded and just dont seem to care . Cancer Fundraising has it right but 78%of children do recover. You are an amazing person thanks for the great Post !God bless ozgal
 
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anonymous

New member
i loved ur post i hope one day i can feel so0o good about also instead of so0o down i think that post will hepl a lot of us feel good. P.S...thank u i needed that
 
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anonymous

New member
Emily, I'm totally the same way, open and up front. I think that the more questions people ask, the better. I always try to correct any misinformation they have. Keep it up!Debbie22 w/ CF
 
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EmilysMom

New member
As always, I am proud of you and I think you would have been a totally different person without CF , but then Daddy and I would have been different people too! Luv ya! MOM <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
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anonymous

New member
Emily, My daughter is only 4 (almost) but I hope she will be a lot like you. For the first year after diagnosis we wondered why this was happening to us. Over the years we have seen why. She has raised a lot of money for CF because it has involved us in fundraising. She has also raised awareness by being on TV and in the paper on a few occasions. We have met some wonderful people we would not have met otherwise, and learned a lot about friends we already have. It has brought us closer together as a family and given us a new appreciation for life. She also has a strong character, and people says she is advanced/older for her age. It is not the life we expected, and I wish she were not sick, but she is who she is because of it (and so are we) and I wouldn't change that for the world.I can relate to your mom's email as well and I hope that Ashley and I are just as close when she is your age. It is nice that you are so close even though you are away at college. I imagine it was tough to let you go but I'm sure she made sure you were well prepared.
 
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anonymous

New member
Your attitude is great. I admire you for your great attitude and your willingness to educate people about the disease that is part of you. I live with my boyfriend who has CF and he has the same great state of mind that you do. It is one of the reasons that I love him the way I do. You will be healthier and happier for being able to accept who you are, because of and in spite of the disease you have. It is a big part of who you have become but it is not all that you are. Good luck with everything you attempt in the future. I am sure you will have success in whatever you choose to do. I wish you a happy and healthy future.Amanda24 w/o CFASander6@tampabay.rr.com
 
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bowlingguy

New member
Emily you are outstanding. At near 33 ive been through quit alot ups and down, and ive been the person hiding it, and the person not hiding it. Ive had roughly 50+ hospitalizations for antibiotics, and never once did my friends not know where I was. But, being judged by strangers that are clueless and even with a few words from me would be either still clueless, or judgemental, Ive learned to hide certain things. There are many things people cant understand, and unfortunately sickness is 1 of them. Now im not talking about people you might see at your church, im talking about people you might meet at a bowling alley, or just people sitting around you at a theatre. To me its embarassing to have a hymoptosis in a crowded theatre, coughing blood into a cup or something, so you really expect to be ok with telling people what just happened? I am in no way ashamed of my disease, but I feel its easier if people learn the brighter side to C F rather then seeing the painful and depressing side first hand. Maybe im just not as outgoing as you, but imho my health is my business, and I choose to share it with those I believe care enough to learn, not just anyone I see walking the street. And dont get me wrong Its great your as open as you are, but dont be upset or judgemental of those of us who prefer to hide it at times.
 
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anonymous

New member
Reading your post reminds me of..... MEMy 3 year old step son helps me with all my IV stuff... people look at us funny when we are on the train injecting me with syringes and that i let him hold them for me if he wants... but hey, its the way our lives work... we are used to it, so everyone else should too... We named my port Bert, he sticks out so far and everyone sees it. My dad once told a woman that i had been shot in the shoulder when she asked about the dressing. Crazy parents.As most people know, you also need to have a sense of humour about this disease, it sucks but ya gotta find the bright sides and the parts that can make you smile. Like the fact that we have UGLY loogies and as girls we have 110% good reason to spit uglies in public.
 
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AbsintheSorrow

New member
Thank you for the lovely responses. And for bowlingguy, your choices are your own. And I wasn't too specific when I was talking, I guess. I don't just tell every shmo on the street, so much as people that have the curiousity enough to ask. And not rude people that ask, but people that ask out of an actual wanting to know. People that just sit and stare, I usually stare back at until they get uncomfortable and look away. Hehehee. And just on a side note, because I find it interesting... you said you wouldn't hide it from people at your church, so much as people on the street. When I was young (7, or 8-ish), we went to a church every week at home. I always used to cough during the sermons. One time there was a couple behind us who offered my mom a cough drop for me and my mother politely declined, saying I couldn't have them. The woman then whispered to her significant other "Well they should DO something about that child's cough." My mother was insulted. She went to our minister, or pastor, or whatever he was (I haven't been to church since I was 7, or 8-ish, I forget what the terms are), and told him about it. The next Sunday he told the church that there was a family with a sick little girl that attended church every week and explained briefly what it was about. Then that snotty woman bent over backwards to be nice to my mother. And ever since then, we haven't attended church. I don't tell this story to contradict you, or anything of the sort. I just found it ironic. <img src="i/expressions/face-icon-small-smile.gif" border="0">And I think a big deal of why I'm so open, and always have been, is because for a few years when I was younger (I think it was something like 6 years), I was a poster child for CF. So it's the way I've always been. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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AbsintheSorrow

New member
PS--- To the last anonymous response, I had never heard them called uglies before. I love it!!!<img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
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anonymous

New member
I don't want to offend anyone with my post, I jsut want to share my thoughts and some ventings I hope you don't mind.I just hate it when people are so rude about things they don't understand. I mean ok the church lady was trying to be nice, but instead of ASSUMING that your mom was just being mean and not letting you have a cough drop, she should have thought first, I mean if it were me I would have thought maybe you were allergic to cough drops. You know. People irck my tators...lol..Being a church person myself I really hate it when church people are so judgemental like that and then they wonder why people left their church or why more people don't go to church. UGH. ok I maybe sounding judgemental here but I have a reason. I have to many friends and to many people tell me they don't want to go to a church because they are afraid of being judged or outsiders. I have a best friend, whio is Korean, like all humans made mistakes in her past and she is now, engaged and pregnant. I love her to death. She wanted to go to the church i go to because she knows me and my husband. ITs a small church about 100 people at the most. She is still reserved about going because her old high school teacher goes there and the teacher was very rude to her in the past, especially after her dad died. And this teacher is one of those that wonders why more people don't go to church. I mean come on. If your going to be rude to people don't expect them to want to be around you. Off the church thing. When I was in high school the kids were rude and mean too about me having cf. I mean I never hid the fact i had cf, but yet i didn't go tell every shmo off the street either. I am like you Emily, if they ask and are being nice about it I tell them. If they are rude and have a disgusted face, it really depends on my mood if i want to tell them or not-I usually say i have a terminal lung disease and then they kinda feel stupid for being rude about asking. Anyway the kids in my school, small school, needless to say the majority were very mean and teased me. You would think they would have left it all behind in 3rd grade. I had kids, even a "friend", moch my coughing, the drugies teasing me saying i secretly shoot up in my iv with coke or something. I would always tease back, mainly because if you didn't the teasing would be worse, plus teasing back was my defense and kept me from being so upset. But when i got home it would still kinda hurt my feelings sometimes. They didn't really care what i told them. They just wanted a good laugh. I even had to break down with my own so called friends because they never once called me when i was home sick or in the hospital. I was even in the hospital for two weeks and when i got back to school they go "where were you at?" Uh i told you i was in the hospital when i called you a week ago. I had to tell them that the next time i get put in the hospital i could die (you know not really but it could happen). I had to tell them something so that they would understand a little more the severity of CF because it seemed to them that because i did home ivs i was really fine, just a "bad cold". I just got a weird look from them saying "whatever". Needless to say we aren't friends anymore. It just upsets me when people make fun of or talk badly about someone with an illness just because they don't understand it. You can try to explain it to them but they just don't want to listen even if they do ask. I am proud of who I am, CF made me the person I am. I may be a shy person but I like to think I have good morals, I am kind and people like me (now i sound concieded). I don't hide the fact that I have cf. But sometimes it still bothers me when others give you bad looks in the store or resturaunt when you have an iv in your arm as if they are saying "eww diseased person, stay away from me, you should be in the hospital" I have gotten alot of those looks. Sometimes I stare back, or inch closer to them or even move may arm so the iv is even more noticable just to get to those people, hehehe. But at the same time I am able to share with those few caring people what cf is and they seem to walk away thinking about it. And when you do meet those caring people, strangers, who jsut come up to you after a coughing fit "are you ok? do you need some water? here take my seat." it reminds me that not everyone is heartless. some people do still care , even if they try offering a cough drop that doesn't help but you take it anyway to be nice. sometimes i get so down and think that there aren't very many caring people any more, but by that time its another hospital stay or i have another public coughing fit (they happen alot) and some caring soul is there and i remember, there are caring people out there, more than i think there are. ----(i am saying people caring for others not just me-thought i would clear that up). Anyway. I just wanted to vent. Thanks for listening.Amanda
 
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AbsintheSorrow

New member
I totally agree with, I think, every single thing you said, Amanda. I tell people that are honestly curious, or concerned. When people are rude to me, I'm rude back. I can be very nice, but if you give me a reason to be a bitch, you had better believe I'll take advantage of it. People that make faces, or rude comments, usually I do the same exact thing. I tell them I have a terminal lung disease (making sure to include the "terminal" part), because then they feel like a jackass. I have had many people ask me if I'm okay, or if I need water, and even though they don't understand, they're being nice, and honestly concerned. Those people I'm perfectly pleasant to. And the friend thing... your friends sound like they suck! I've only been in the hospital for IV meds I think 4 times (though I do home IV a lot), and my friends would call, or come by. The last time, my boyfriend spent the night with me and slept on the tile floor (I love telling that story!). You need people that don't suck. Haha.And one thing that I so very much feel you on is the home IV thing. Home IV is easier, and much nicer than being in the hospital. BUT WE'RE STILL SICK! Just because we're not being hospitalized doesn't mean we're peachy keen. People don't seem to understand that. You can tell them that 100 times, and they still don't get it. I don't want pity, I don't want people waiting on me, or any of that crap. All I want is some recognition. Even if I'm home with my IV, all I want is for people to ask how I'm doing. Or to wish I get better. That's all. Just for people to notice that, even though it's a home IV, it's still a serious and sucky situation. Besides my family, my boyfriend Mike, and maybe 1 or 2 other people, when it comes to home IV, I'm kind of ignored. When you're in the hospital, you get cards and flowers and fruit and candy. And I don't want or need any of that stuff. But when you're home with the IV, people act like you're just fine. I guess people's ignorance is what pisses me off when it comes down to it. Because the people closest to me know better. When I have my port accessed, I get help from my family. My sister, who doesn't always get along with me (she's 16), will ignore anything she might be mad at me for and wash my hair in two seconds if I ask her to. My mother does it. Mike does too. Without complaining, or telling me to just do it myself. So the people that matter know better. I guess people in general just need to pay more attention. Ignorance is a bitch. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
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anonymous

New member
Yeah you seem to understand me completly. Sorry when i get a little agravated i don't make sense...lol.....But yeah the friends sucked. Know things are much better. My husband is my best friend. He is just like your b/f. When we were dating he hated leaving me when i was sick. He even stayed in the hospital with me, on those cold tile floors, kinda romantic i think. He even would do my ivs and still does when i need them late or really early in the morning so i can still sleep. He even did that when we were dating. He was like my angel and my mom's, cus she would always do the 2 am wake ups and do the iv for me, but he would stay over and do it for her and me..AWW...lol Ok enough about that i could go on about hubby forever cus i love him so. But you are right the people that matter are the ones who care. I stopped getting cards and stuff after about my 4th time in the hospital but i still had people calling to make sure i was ok. Thats what I liked best someone visiting or a phone call (hospital or home ivs). It breaks up the boredom and its just nicer i think. My brother is 6 years younger than me (he is 15). Just like your sister once I get sick or put in the hospital whatever fight we were having disapeared and he would help out if I asked him to. It seems we are both lucky to have those special people in our lives. Amanda
 
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bowlingguy

New member
Emily, from your first statement you didnt seem like the type of person that would quit going to church simply because someone judged you. Yeah i know you were young and im sure it was your mothers decision, but normallly you learn how to be who you are from your parents. Anyway don't let that 1 situation turn you from god or church. I dont go as often as i'd like, and I too have had the coughing episodes in church and had people look or judge me. "If he has a cold he shouldnt be here in church spreading his germs" this is the look I always seem to get, I just think to myself they don't know me and I dont care what they think. I do have to say both you ladies are very lucky to have a man that loves you, I myself havent been in a relationship in over 6 years, and its mostly due to me being so shy because of my health. Anyway have a nice easter..
 
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AbsintheSorrow

New member
I didn't turn from church because people judged me. My mom and dad decided to stop going. But either way, it doesn't matter. Because over the years I have made my own opinions on the religion subject, and based on my own beliefs, I wouldn't go to church anyway. I certainly don't believe in organized religion. And although I believe there's something, and some kind of afterlife (though not the traditional heaven or hell), I don't believe in the typical "god." I go a lot of places I don't seem to be wanted if it's somewhere I want to be. Haha.
 
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AbsintheSorrow

New member
Thank you much! This is irrelevant to the topic, but I am their nunber one fan. Saw them live 4 times within the past year. I looovvveee them. And Amy Lee is my Goddess!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
Dude Emily you rock!! It must be the name and CF thing because my name is Emily and I have Cf too. We sound a lot alike. I'm kickin CF's butt right now and I always will! NEVER let it get you down..I don't. Never have I stayed home from somewhere because of CF (except during tune ups). I excercise, work go to college and have fun. I also try to laugh and get people to laugh with me at least 95% of the day. The 5% is when I'm sleeping. I always spread the word about it, I speak to high schools twice a year (but I don't make it boring like most teachers do). I made 2 people pass out in one day last month...seriously. I was telling them about getting ports, picc lines and surgeries and two passed out and hit the floor. They are fine and laugh about it now but it was kind of scary. I'm working on writing a talk show/play right now...I will probably need the help of you CF'ers out there. More will be posted when I get closer to putting it together. I enjoy life more than anyone I know. There's always a smile on my face and that's because cf has made me who I am; strong, courageous and down right sweet! I'm just kidding there but I love to have fun and plan to keep on truckin,I'm starting a band called HELLEN too so if anyone is from MI let me know and I'll keep you updated on it.peace love and rock n roll,Emily22 year old pwf, theatre major, rock n roller
 
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