This place is so cool!

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anonymous

New member
Hmm...where do I even start.

I am 19 year old male with CF and CFRD. The weird thing is that up until almost 3 years ago my lungs didn't make any mucous. When it all started I had no idea what was going on....my parents had never explained what my CF was; all I knew was that I would just get a "tummy ache" if I didn't take my pills. So I went on for about 4 months thinking it would go away, it was while I was at home during a tune up (only my 2nd and I was 17 at the time) playing on the computer I really found out what it was. I was hurt that my parents hadn't told me what exactly I had, but also understanding....who wants to tell their almost 100% healthy kid they have something that may kill them. Even when I was diagnosed with CFRD I didn't realise it was CF realted, I just thought I had "regular people" diabetes. We still don't even say Cystic Fibrosis, we just call it "IT". I find it so hard to talk about "IT" with family and to even think about talking with friends about "IT"...GASP! <img src="i/expressions/face-icon-small-smile.gif" border="0"> Since I was "healthy" most of my adolescence(sp) none of my freinds know I have "IT".

I still lead a normal life I attend school full-time and up until a couple of weeks ago worked part-time....I finallly decided though I needed a change and am looking for a new job.

It's just so neat to see that there are other people in my boat! It's just weird to read the old posts and see people are going through the same thing I am...WOW! I'm not the only one who gets a awful coughing spell and just tells their friends, "aww it's just one of those back to school colds" or who can't sleep because their up hacking all night, or who worry about being able to finish college, or being a burden (sp) to their parents, or being perceived as week, or freaking out when they cough up blood and tryinfg to hide it so I don't freak out my parents.

So I have to ask do you any of you all try to hide your CF? I've been trying to do that for the last three years almost and it's getting harder. I do want to tell people but I don't want them to think I am playing the "pity" card. How do you all tell people? I guess my main fear is hearing people say "Ewww GROSS!"

OK if I can figure out how to register I will....I don't want to be some nameless Anoym.
 
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ej0820

New member
Welcome to the site! This site is pretty cool...finally, people that know what we're all going through, and there's no chance of catching something <img src="i/expressions/face-icon-small-wink.gif" border="0"> To answer your question, I don't hide my cf, I just don't mention it a lot. I'm not at all ashamed of it, but when I tell ppl, they don't get it...AT ALL! It's kind of rough too, because once I tell people (like close friends), I feel like they're afraid to ask me questions about it (and I know they're curious!), as if they'll offend me or think they're being rude. All my friends and family know, and a lot of my teachers do too. I find it's a lot easier to talk to adults about CF than it is to talk to ppl our age. Goodness, I could talk about this for hours...do you have AIM? If you ever want to just chat about CF or something, feel free to IM or e-mail me! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Erin
19/f/cf
IM: plainjane192
lewelyth@aol.com (make sure you head it "CF" or something so I don't delete it <img src="i/expressions/face-icon-small-tongue.gif" border="0">)
 
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anonymous

New member
Hi there,

Your story is nearly the same as my boyfriends he too has CFRD and hardly anyone around him knows that he has got it he has only ever told one person that he has got CF and that was me. He doesn't know much about CF as his parents have tried to bring him up without any special attention he has got a brother and a sister without CF so that is even harder on him as he says why is he the unlucky one etc etc. His family don't talk about it either which is so hard on him. If you feel like chatting some more you can contact me on cuddles0921@hotmail.com
 
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pea2

New member
OK I registered, I am now Pea2. Let me explain...my family and I own and show Tennessee Walking Horses (flat shod) and my horse's name is Papa's Ebony Amos.
 
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Emily65Roses

New member
I grew up as a poster child for several years. My parents were always totally open. I understand not wanting to be perceived as playing the "pity" card, but there are ways to go about it where it's usually fairly clear that's not what you're doing. I don't bring my CF up at random. But if people hear me coughing and ask why, or what have you, I'll give a quick explanation. If they pursue and continue asking questions, I'll keep answering them. I love to inform people, but not if they don't want to know. So basically, I'll answer anything that people ask me, but I don't push this information on people that don't care to hear it. When I do bring it up, I am very frank and tell the truth about it, while at the same time having a good attitude about it. People say things like "Ooohhh that sucks, I'd be so depressed if I were you, etc etc." I respond with things like ____ happens, and I've lived with it all my life, so sure it sucks, but there's no point sitting around being depressed over it. Might as well have fun while you can, etc etc. People usually tell me I have a pretty good attitude about the CF. I don't think I even say anything specific to make sure it's known that I'm not looking for pity, but people can tell by the way I say it. I can't really explain that, but I'm sure you get the idea.

As far as hiding it and not talking about it openly... I'm not about to call down your parents for doing that. They're your parents and they had the decision to make as they please. However, I personally would never do that. CF's not the coolest thing in the world, no. But it's important that you're educated about it. It's important you know what's going on, so you can make medical decisions regarding your own case, etc. And, as far as I'm concerned, it's not anything to be ashamed of. At all. Ever. I'm, in a way, proud to have CF. If I had the choice, would I be healthy? Absolutely. But since there's nothing I can do about that, there's no point in dwelling on it. In the meantime I'm a much better person because of the CF. I'm a more compassionate, understanding person, I'm more medically educated than I would've been otherwise (about a bunch of stuff, not just CF... I soak up medical info... and live on Discovery Health). I have a better attitude about most things than I would have otherwise. I appreciate life more, all the little things that most people take for granted. I know I've said this before, but my boyfriend Mike loves that about me. He has said to me that he loves that I never take anything for granted, and it helps him to do the same. He's become a more understanding and compassionate person because of me. He used to smoke, and be proud of it, and he hated people who didn't understand the smoker's rights. He met me and started learning all about my CF, and a lot of changes happened there. He quit smoking. He still realizes smokers have rights (I do as well), but he understands better now why some places have to be smoke-free. He enjoys a lot of the little things more now. And he's very much involved in my "CF life." He goes with me for my appointments, stays with me in the hospital when I stay overnight, he knows how to do my IV meds, he knows how to access my port, he keeps track of my Pulmo for me, and so much more. CF is in no way a skeleton you should be hiding in the closet. If you had your way, it would be different, of course, but you don't have a choice. So why not embrace it? I have a tattoo... and am considering my next one. If I ever get around to it... it's going to be 65 and then a rose. When I go to the beach, I wear a two piece, and everyone is able to see all my surgical scars and my port. They're like reminders of what I've been through, who I am. I'm proud of them. And I'm always willing to answer people's questions. I've said this before, there is no question you can ask me (about my health or how I deal with it) that will offend me. I stick by that. I've been asked some questions that other people find pretty graphic or offensive, and I have yet to be insulted. I'm very very open about all of it. I realize I'm very much to one extreme on the "how open you are with your CF." There are others who are to the other extreme, I just could never see living my life that way.

Now that you know, it's up to you to decide how to deal with the CF. But it seems as if you're willing to be more open than your parents are. Your comment about "GASP... IT!" gave me that impression. As if, yeah it's there and it's not something I really enjoy, but since I'm stuck with it, why hide it? If you wish to be more open than your parents would like you to, that's entirely your own decision to make. And if you wish to talk to your parents about it, I'd say sit them down and tell them so. Tell them you want to have an open discussion about it. They shouldn't be ashamed of your CF, just like you shouldn't. There's no reason for shame. Maybe if you present a good attitude (like I imagine you already have been) about the CF and what you know about it, your parents may see that it's not as terrible as they seem to think it is. Maybe they'll open up a little. Again, it is, of course, your decision to make. But I got the impression that you want to be at least a little more open than your parents have been. And if that's the case, I say, go for it! Open up, learn, educate yourself, ask questions, answer questions. It's never a bad move to educate yourself or others.

If you ever want to talk, I'm always around. I tend to pop up a lot on this board, but I'm also reachable via AIM and email. My email is Emily65Roses@yahoo.com and my AIM name is Emily65Roses. If you want to ask questions, or just talk about anything at all (CF related or not), say hi sometime. <img src="i/expressions/rose.gif" border="0">
 
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pea2

New member
My parents are open about it, they are very involved in Dr. Appts. my mom is a sponge like you on the CF stuff, she's my lifeline. I think one reason they chose not to tell me about CF when I was younger was that they wanted me to be as normal as possible. I guess what I should have conveyed too is that being a guy I feel weird showing emotions about it...talking about it, expressing frustration I just keep it bottled up. I think I do want to be more open about it, it's just so hard.

That's cool that you hat a Tatoo, I have one as well a large chinese symbol for "Horse" on my right shoulder....they hurt like He-- don't they?

:)
 
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anonymous

New member
I totally hid my cf for the longest time. I hid it up until I was about 17 years old. Then it just got too difficult and I told all of my friends slowly and explained it to them. I have to tell you being honest about it made me a lot happier person because of the support I recieved. I had more visitors in the hospital. More help with stufff that I needed help with. And people understood if i "sketched" out early to go home to do pt or because I wasn't feeling well. When I went to college I chose a small liberal arts school and was completely honest with everyone from the very start. It made my relationships with people so much deepr. YOu really have a chance here to affect a lot of peoples lives and be an inpiration to so many others. I would be as honest as I could about it if i were you. You will notice a huge difference in how you deel with your cf and how others deel with it as well. HOpe this helps.
Margaret Double lung tx 11/11/04 cf
 
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Emily65Roses

New member
I'm a little weird... I enjoyed the pain when I got my tattoo. lol Ahhh expressing emotion as a guy. Gotcha there. Most guys have trouble with that, but if you try, I'm sure it'll get easier. I understand it's hard being open about it, but it's also very freeing. Basically everything Margaret said. You have more support and more understanding the more open you are about it. It may be cold when you first put your feet in the pool, but then it's so fun to swim! <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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Joblazer86

New member
I will not tell someone about CF unless they ask and my parents never kept it from me what I have I've known as long as I can remember!
 
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Starfall99

New member
Everyone else has pretty much covered what I would say, so I'm not going to bother repeating everyone, but I have one comment to make on this:

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>How do you all tell people? I guess my main fear is hearing people say "Ewww GROSS!"<hr></blockquote>

It just made me think of how one person reacted when I said I have CF, a guy in one of my classes in high school... First of all, I can't remember EVER getting a bad reaction, maybe I'm just lucky, but I wouldn't worry about people saying "Ewww GROSS!" <img src="i/expressions/face-icon-small-smile.gif" border="0"> But this was one of my more amusing reactions. I don't even remember what the guy asked me about, maybe my cough or something, and I said I have Cystic Fibrosis. He looked at me very solemnly and went "Whoa..." I was a little surprised and asked if he knew what it was, and he very gravely replied, "No, but it sounds serious!" <img src="i/expressions/face-icon-small-smile.gif" border="0">

Eliana
25 w/ cf
 
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EmilysMom

New member
I can vouch for Emily. LOL......She was a poster child from the time she was 3 until the time she was about 8. Connecticut used to use 4 or 5 poster children so that there would always be a child available for every function. We travelled all over the state for those years going to many different events and fund raisers and meeting lots of people. We met the Hartford Whalers (before they went bye bye), Frank DeFord, Boomer Esiason and several other people who Emily has nice memories of. It was fun!
 
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Emily65Roses

New member
Oh and Eliana. ... That's such a funny story. Hahaha. I, too, don't recall ever getting a "OH THAT'S GROSS!" when I tell people about the CF. But several times I have told people and they look at me with a solemn expression, or give me a quiet response of "ohhh." Sometimes I ask, sometimes I don't. But if I don't, I always wonder if those people actually know what it is. Hahaa. <img src="i/expressions/rose.gif" border="0">
 
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tfontain

New member
>> Ahhh expressing emotion as a guy. Gotcha there. Most guys have trouble with that, but if you try, I'm sure it'll get easier.

i agree, that it is tougher being a guy..
we think we have to be tough and not show emotions.. and people will think you are weak.
My folks kept me as normal/hidden from Cf stuff as possible .. learning little bits when attending clinic, until i was about 18 and started reading up on it myself.... and what it actually meant.
i mostly was enzyme deficient until in my 20s, then started with the lung and sinus problems since.
someone told me along the way, the more i know and make the "informed decisions".. the better life quality & longer i will last.
 
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