what role does Cf play in your life?

[wanderlost]

There is a post on here about what your future looks like and it has gotten me thinking. In all actuality, I think I should mix CF into my future outlook, but I don't.
I know that many here are "sick" with Cf and that just as many are (relatively) healthy. Many of you know by now, that I have been so far (knock on wood) pretty lucky with CF. Somehow I think genetics/life has been kind to me and Cf has really just been this little minor annoyance on the back burner of my life.

Coming to this website was my first real "acceptance" that I do have this disease, as I spent so many years hiding from it and pretending it wasn't there - I was able to do this, as I wasn't "sick." But now that I am a parent and an adult I have decided I must be very proactive about my disease instead of pretending it isn't there so that i can try to live another 30 (or more, I'd prefer) or so years with relatively little disturbance from this thing that hides inside me -

so my question to you is, what role has Cf played in your life? Has it been the lead star or a supporting role or just an extra, and how do you feel about that?

As an aside, I wrote this in a journal I kept in high school about Cf, and just ran across it. I think it is just interesting to see how I was thinking at the time:

There are so many things I hate about Cystic Fibrosis. I even hate saying the word - it's such an ugly word. Greasy hair, pimply face, congested lungs full of thick, salty, chunky, frothy, yellow gunk. It makes it s appearance every morning unwanted and unannounced but she is forced to acknowledge it. An unwanted visitor, a guest that has much overstayed its wlecome. She tries daily to force it out, but it won't leave. It fades, it spreads, it glares at the audience. It says, "I am here, invading her body, wracking her with spasms, forcing her to live with my invasion and you must watch and wonder and feel sorry for her." She is forced to assume its foulness as its representative while it laughs inside her.

 

[thelizardqueen]

I hate to sound cliche, but I see CF as this disgusting fugly looking mucous plug with a scary cartoon face on it, taunting me saying 'nenernener'. It's definitly that 900 pound gorilla on my shoulder. Its an every day presense that annoys the hell out of me, its hard to deal with sometimes and it doesn't listen to what you want. It doesn't consume my life, but I always know its there. Cf is like the girl you know who likes your boyfriend, and is always lurking in the shadows to pounce. You worry about it, you hate it, but it doesn't consume your life.

 

[LisaV]

Funny you describing CF and the girl lurking in the shadows who wants your boyfriend.

My husband and I called his illnesses his "succusbus" - a female vampire that wanted to suck out his life force.

Seemed right to me. I could get real jealous. Seemed right to him (escpecially when he had an exacerbation) because sometimes he would almost feel too weak to fight and then the diseases almost seemed "attractive".

Most of his life he managed to do whatever "magic" it takes (must have been those treatments) to keep "Rip's succubus" out of the house and almost out of his mind (not completely, tho', got to keep your guard up and not invite them in). When the succubus did arrive, he'd tease me about helping him get rid of her (too private) --- and so we did.

 

[EnergyGal]

Very creative topic

What role does CF play in my life. Well I can answer that from the cf days as I am now a transplant patient. When living with cf before my first transplant, I looked at CF as my child. I took care of my child, nutured it and did everything to protect it. When I became ill it was hard for me to relate to an illness as the child so I just faced my life with as much strength as I could muster. I remember having this discussion with some of my Cf friends at the time and most of them said they look at CF as their enemy. I feel my cf taught me many lessons that I would never have learned in life if I was born without the illness. I once dated a doctor who told me that CF made me the person that I am.


After my transplant, I looked at CF as a battle I did not win but was able to put it to rest. I carry the theme of taking care of my child again with my new lungs. One doctor told me having new lungs was like having a newborn child(because of the immune system). When you receive new lungs it is like giving birth to a new life. I told this to my friend with CF who has six of her own children and after her transplant she agreed with me.

I feel if you feel threatened by the disease (which is very normal) you can use this to motivate you to possibly take better care of yourself.

I do have some worries at times but I have learned that if I worry in excess, then I will get sick so I have learned the hard way to let things go and make light of as much as I can.

 

[EnergyGal]

I would like to add
What is the Mad Dog?

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosis.com/articles.cfm?article_id=100002
">http://www.cysticfibrosis.com/...cfm?article_id=100002
</a>
This was written after my divorce in 1990. This was a great motiavational project for me and it was enjoyed by many young children at a CF camp in Florida.

 

[Emily65Roses]

<div class="FTQUOTE"><begin quote>so my question to you is, what role has Cf played in your life? Has it been the lead star or a supporting role or just an extra, and how do you feel about that? </end quote></div>

I'd say it's a supporting role. It's pretty big, and that's fine. But I'm the lead!!!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

I was a CFF poster child as a kid (very young until 8 or 9), so it was always right there in front of me. I have always had GI trouble, but my lungs were *fairly* clear until I hit 16. Since then, they've been much more of a pain in the buttocks. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> There was a period in there where I'd say CF was just an extra... time between maybe 10 and 16. But as it started being a pain again, it came back into the spotlight some, and has again become a supporting role.

I don't really have any qualms about it being a supporting role (as opposed to an extra). It's part of me. It's shaped who I am, what I'm like, the things I think, etc. It's a pain and it sucks, it's going to kill me, it limits things I can do, but it's done good things to my personality too, so... *shrug* I'm very open about it, always have been, and it doesn't bother me that it's got a fairly "big" role.

Just as long as it... and everyone else knows... THAT I AM THE LEAD, D*MNIT!!!! lol

 

[Faust]

"what role does Cf play in your life? "


Lead villain.

 

[Jane]

you know in the original Halloween movie...when finally Jamie Lee Curtis thinks she killed Michael Myers and she sits down in the house, exhausted...everyone wants her to get out...and she doesn't....

then he jumps up from behind the couch!

that's cf in my life

 

[anonymous]

<img src="i/expressions/face-icon-small-shocked.gif" border="0">

 

[Diane]

cf was never a starring role in my life till the cepacia came along. Then my ongoing hemoptysis problems came along and teamed up with it.....................

 

[JustDucky]

Hmmm...good one. Since I have only been dealing with the CF diagnosis under a year now, it is almost hard to classify whether it has been a leading role in my life. As much as I want to and try to remain optimistic that I am bigger than this disease, I feel that sometimes the CF is as Liz puts it a gorrilla on my back, a huge weight that sometimes tries to overcome me. I feel this way especially when I am ill, like now...going on 6 weeks of antibiotics and I am not feeling great from them as it is, but I know I need it, as well as the multitude of meds that I now suddenly have to take as a result of my pancreas not functioning normally. On the days I feel human, I feel that I am on top, or the leading lady I guess LOL! But, when I am ill, I feel like I am just playing a part behind the curtains with CF being the lead. So, I just guess it depends what is going on with me and my frame of mind at the time. Dont get me wrong...I am a fighter no matter what, and I just refuse to give up my fight, but I am only human and my mind has its moments. I have neuro disease and already live on a vent, so having the additional diagnosis of CF with its daily regimines (chest PT, nebs, enzymes..you all get the point as you live with these problems as well) is and can be overwhelming when it acts up. It took me awhile to get used to the vent, I guess it will be the same with the CF...like I said, I am just so new to it and literally have been flung into it.
Thank you for listening....again, very good topic. Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[rebekahphillips]

In the summer, the weather gets really hard. I have to do extra treatments when the humidity is high and if there are any ozone alert days. Both of these factors really affect my breathing and wear me out physically. When we have many ozone alert days,100 plus weather, and high humidity, I always felt frustrated about my daily struggle to breathe. Also, I started feeling sorry for myself.
Just when I am about to throw myself a pity party, God came along to crash my party. He reminded me of all the good things that He has done in my life. God reminded me of the time my doctor told my parents soon after I was born that I would not live past my 13th birthday but God extend my stay here on Earth. There was a time that I thought I wouldn't even graduate from high school, but God allowed me to graduate from college. As of now, I am 28 which is double the age of 13. God has helped me to reach others of those who are sick. There is a book that my mom wrote that talks about how she raised a child with a disease and how she brings glory to God. This book, A CHEERLEADER FOR LIFE, is sold all over the US at Cheer Camps by Christian Cheerleaders of America. The most exciting thing is that I am now working with a mother who has twin boys with CF.
God has gently reminded my that I should not feel sorry for myself when there are two kids who have CF within the same family and that there are people who are sicker than myself. God reminded me that I was put on this Earth to have CF so I can bring glory to God by helping others who I can identify with.
So, I encourage others who are going through a struggle. God brought any struggle to your life to bring you closer to Him and to help others going through the same struggle and bring them closer to God.

 

[Ender]

Wonder...I feel almost exactly the same as you.

I never really accepted it until recently. I always ran from it...ignored it, pretended it wasn't there. I was offered a wish from the wish foundation, but I refused it, partly because I WASN"T sick, and partly because I didn't want my name in the paper. I didn't want people looking at me differently.

I think for the most part, because my health was ok, it worked for me. I didn't worry about it, I didn't think that it would become a problem in my life, so I did normal activities that anyone else would (both good and bad).

I knew that it was progressive, i knew that it would get worse, but I didn't accept it. Not until recently. I can feel it a bit more, it's subtle graces...and it pisses me off.

It's wierd. It's not so much the physical toll, but the mental that affects me. Recently, I've realized I think about it a LOT...when I'm at work, at a party. It's like, constantly in my mind. Like a program in the background, eating at the resources that could be used for something else. How much time and energy do we put into this damn disease. How much reserve do we have. It's seems like I focus so much on it that I've forgotten to appreciate some of the little things in life.

Even when I'm having fun, I think of the repurcussions. If I'm at a party drinking, I am thinking of how I'm going to feel. If I eat too much cake, i wonder how I'm going to feel. It's like, you can't relax, you always have to be on gaurd. grrrr

BUT, then i realize...cf makes me think a lot differently. Who else thinks the way we do. Who else is happy to get older, to put on some extra pounds....to be alive. Who can step back and realize that they HAVEN'T been noticing the little things in life...that it's great to be alive. That the suns shining, the birds chirp and we hear it.

for all of it's misery, I read what you guys have to say, and I realize that we have gained something from it. And if there ever was a cure, man. Just think how happy, enlightened we will be. I don't think there would every be anything that could bring me down.

Ok, enough of my rant...
Kiel