I'd like to know more about life with CF

PeptideBondGirl

New member
I don't have CF. So why am I here? As a child, I read "Give Me One Wish" by Jacquie Gordon many times. Her daughter became someone I felt I knew, even though I was born right around the time she passed away (I'm 25 now). I'm returning to school soon (already have a bachelor's) and I plan to get a Ph.D. and have my own lab in which to study CF treatments. I'm studying hard, I promise! I guess I'm here to learn more about life with CF, so I can remember the real people involved instead of getting caught up in chromosomes. If anyone feels like sharing, my email is megan@uofr.net.

Best,
Meg
 

Mockingbird

New member
What about cf life? You mean, like treatments? <img src="i/expressions/nebulizer.gif" border="0"> They take a long time, and can be a real pain in the butt, especially when I have to be to work early in the morning or I get home late at night. It's a lot easier to just go back to sleep rather than force myself up so I'll have time to do my treatment, but of course it's absolutely necessary, so I force myself to get up. Though, there are sometimes I just skip it; but then I always pay for it with coughing fits later. =-) <img src="i/expressions/coughing.gif" border="0">

Ha ha, then there's the farts. =-) <img src="i/expressions/gas.gif" border="0"> I can clear a room on a good day. =-) It used to be embarassing, and I'd hold it in until I was alone, but now I just let 'em go. =-)

Eating can be a problem, and being able to afford all the mountains of food I go through. =-) In fact money is an issue all around, but with medical bills, there's a few months grace period before the bill collectors start getting serious. Grocery stores don't carry charge accounts anymore, at least not in the city, so i try to always have some cash handy for going to the store. Since i'm on such a budget, i try to get as many calories in for as cheap as possible; buying milk when it's on sale and things like that. It also kinda limits what is in my cupboard; canned corned beef hash (which may or may not be cat food =-) polish sausage, pasta noodles, potatoes, generic rice-a-roni and pasta-roni, and the most important item, Mayonnaise! Mayonnaise is cheap, and it tastes good in spaghetti. =-) It's important to have a well balanced diet, so I also have canned fruits and frozen vegetables. Cheese is high-calorie, but way too expensive =-( Oh, and I always have lots of Kool-aid and grape-juice, since it's important to stay hydrated with CF.

I don't really tend to go out all that much. In Colorado, they still allow smoking in restaurants and clubs and such, so no good for me. =-( I'll go out with a friend every once in a while for a special occasion, but nothing beyond that.

I guess that's about all I can think of, except I have to go to the clinic quite a bit. luckily it's just about a mile down the street, though. I guess it is kinda weird I usually have more doctors than friends. i wouldn't have realized that unless someone pointed it out to me once. =-) Oh, yeah, and there's work, but part-time is about all I can handle anymore. It is kinda depressing to see my friends starting their lives, becoming successful, getting married and such... you know, getting ahead while I seem to just keep getting further behind, but it's one of those things that i just try not to think about. =-) It's kind of like I lost my entire young aldult-hood, and now I'm already old. =-) My hands shake, and when I go down stairs I have to do it one step at a time because my knees don't work so well anymore. Fortunately, I have a huge receeding hairline, so as long as I don't wear a hat i look a little older. A lot of CFers have the problem of looking younger than they are! Ha Ha, how many men do you know who say they are grateful for their receeding hairline? I'm pretty sure I'm the only one. =-)

Anyway, that's a day in the life of Jarod. =-) Good luck with your studies! By the way, i think it is way cool you have your own lab! Its probably not what I'm picturing, though; if I had my own lab, it would be full of glowing test tubes and smoking beakers atop bunsen burnersand glass tubing going all over the place! none of that stuff would actually do anything, though; it would just be there to look cool. =-) Anyqway, please feel free to stick around. =-) There are others without CF here, too, but we still like them anyway. =-)
 

anonymous

New member
I'd love to correspond personally if you'd like just because it may be useful to actually get to know someone with CF on a personal level if you don't already. I'm a sophomore at a New Jersey college. If it interests you, my e-mail is cooney4@tcnj.edu
 

tommy

New member
lol, jarod we need to work on your diet my friend.............Meg. are you going to write a book?(that'd be a cool idea) hey feel free <A href="mailto:negrojimmy@yahoo.com">negrojimmy@yahoo.com</A>
 

Mockingbird

New member
Ha ha, Is your e-mail from Tom Sawyer? Wait... was it Tom Sayer or Huck Finn that had that character? Anyway, i was wondering if anyone's ever gotten offended from the name of your e-mail address... I bet a lot of people have just because they don't know where it's from. =-)
 

anonymous

New member
I can't find that book anywhere. I've looked on play.com but they dont even have it. Anybody have any ideas?

Shamrock, x
 
Top