are you as sick of CF as i am i need some friends that understaand

how many medicines do u do daily
0
1-4 - 0.0%
1
5-8 - 20.0%
2
9-15 - 40.0%
2
16-19 - 40.0%
0
20-22 - 0.0%

 
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blondie6195
New Member


Date Joined Oct 2008
Total Posts : 8
   Posted 10/28/2008 10:35 PM (GMT -7)   
hey everyone my name is megan, im thirteen and have cystic fibrosis. i have known about it since i was 3 1/2 years old. im sorry but i need to vent sorry if i seem too whiney
 
ok so i love doing things going places and excercizing. i like going places with my friends but since i got a lung bacteria i havent been doing that well. im scared to go places with my friends because i have to do a treatment every four hours and i dont want to have a coughing fit infront of them because some of them dont know i have CF and its really embarrasing. i dont really look like i have it so its easy to make people think that im totally healthy. i wish that cf kids could hang out because we wouldnt make fun of eachother for coughing or having to do treatments because we all go through the same thing. sometimes im scared that im going to die young and not have a full life. i would love to know people with cf so i could talk to people i could relate to. my email is ohemgee6195@yahoo.com or you can add me on myspace if you have one at www.myspace.com/girlkorn thanks i love you all bless you!!!!! 
 
                                                                                                                             love,
                                                                                                                                          megan (aka: smiley face)

Gemsi
Forum Moderator


Date Joined Feb 2007
Total Posts : 1050
   Posted 10/29/2008 12:32 AM (GMT -7)   
Hi there megan,
welcome to Healingwell.

CF is tough huh? It does get in the way a lot.

Personally I always found it to be honest with my friends growing up. I'm not saying to do this though, that is your choice to make noone elses.
I found that even though my friends were "normal", and beause they'd known about my CF since primary school, they were very supportive. It did mean though, I couldn't be friends with anyone else in my year, ecause well, try and get a whole year full of people to understand-it's impossible.

The main problem I've always had, is for example, I'll be on a us, minding my own buisness, and suddenly some old lady will be glaring at me for sitting at the front of the bus. So I glare back for a bit. Then, the bus will jerk and set of a coughing fit. Then, this old lady gets up andmoves back a few seats.

Haha, much fun when you cn scare busy bodies with your cough.
I've had a lot of comments and whisperings about me-saying I must be faking disability like many young people, because I look so well. Every now and again I'll respond, but most of the time, I just leave it to my coughing fits to sort them out. Get out a nice clear sputum pot for good measure too.

I'm not ashamed of my CF, and never will be. It's made me the person I am today. Out of many people with CF I know online (and in person, we grew up together ruling the wards at the kids hospital). I've met one criminal. We're talking a lot of people here. I've never met any other 'bad apples'. I think that says something. I don't know what I would be like without CF. Maybe I would be one of the idiots running round streets trying to ruin people's lives or happiness. I probably wouldn't be this strange mix of a big kd at heart, with adult thinking values. I maybe wouldn't try my best to make people happy. I'd have probably grown up knowing my Dad, who I missed growing up, but now know he is a real uncaring person. I wouldn't be so mad on animals, because they scred me, until I learnt that we weren't actualy allowed any, which made me determined I was having a life full of pets to prove everyone. I have an amazing husband, in-laws, and I wouldn't change them.
Maybe I wouldn't have been nearly as stubborn. My trait growing up wasn't stubborness but bossyness. Maybe without CF, I would have stuck with been really bossy, which would have made me such a different person. I think my stubborness defintely serves a better purpose in my life.

Would I totally be rid of CF if I had the choice. I am unsure, it would take a lot of thinking. I have to take soooo much medication and do so much treatment. However, I have an undiagnosed muscle condition too, so I'd still be stuck with some treatemnt and physio. Plus, CF is the constant for me. Everything about my health is unpredictable, but my CF is becoming more and more routine and with a timescale, which is easier to cope with than it used to be. I don't know how much I'd miss is it all honesty.
Moderator of the Cystic Fibrosis Forums
Diagnosed with: Cystic Fibrosis, Asthma, ABPA, Clinical Depression, Mild Liver Cirrohsis, Mild Osteopenia, Erythema Nodosum. Waiting for final diagnosis on Muscular Dystrophy type symptoms.
Medication: Creon 10,000, Flucloxacillin, Vitamins A,D+E, Serevent, Salbutamol, Paracetamol, Ondansetron, Nefopam, Ursodeoxycholic Acid, Saline neb/PEP system, Mirtazapine,slow-sodium, Skandishake and Fresubin.
Had a Port-a-cath fitted on chest wall since Nov 05
Help support the forums so we can support you:  http://www.healingwell.com/donate
Sometimes, I feel that I should go and play with the thunder-In The Shadows by The Rasmus


superdog
New Member


Date Joined Oct 2008
Total Posts : 1
   Posted 10/30/2008 7:55 AM (GMT -7)   
i know how u feel sometimes when i'm in school my friends play chasing and i can't keep up with them because i end up coughing and it's so annoying.they never listen to me when i say i can't run. they just say "u can run you just don't want to play". one friend of mine is nice and she makes the other stupid girls play something else that we all like cos she knows it's lousy on me. i guess having cf helps me know who my real friends are. but having cf is really annoying. i hate doing my physio and my nebulisers. it's so frustrating. send me back a text please it's nice to know i'm not the only one.hope u get well soon.

blondie6195
New Member


Date Joined Oct 2008
Total Posts : 8
   Posted 11/2/2008 12:14 AM (GMT -7)   
hey i totally know wut ur tokin about in PE i always say i cant run bit my friends dont understand and i sometimes have to walk alone cry   i hate doing treatments && medicines it really sucks sometimes but i love knowing about it and it really makes you appreciate life more... huh?
superdog said...
i know how u feel sometimes when i'm in school my friends play chasing and i can't keep up with them because i end up coughing and it's so annoying.they never listen to me when i say i can't run. they just say "u can run you just don't want to play". one friend of mine is nice and she makes the other stupid girls play something else that we all like cos she knows it's lousy on me. i guess having cf helps me know who my real friends are. but having cf is really annoying. i hate doing my physio and my nebulisers. it's so frustrating. send me back a text please it's nice to know i'm not the only one.hope u get well soon.

VMN162802
New Member


Date Joined Dec 2008
Total Posts : 8
   Posted 1/2/2009 2:23 PM (GMT -7)   

 

  Megan- Hey, my name is Vickie and I'm 33 with CF. I was just told 7 years ago that I have CF. I'm about as sick of it as I can probably get!! I have to wear my O 2 ALL day and night. But the good news is I'm on the transplant list for new lundgs!! I was reading your letter and I know EXACTLY how you feel about the coughing fits. I have them ALL the time. I use to get embarressed about it but not any more. Don't be ashamed to tell your friends either, they will understand things better. At first they might ask alot of things but then it will be like just another day. So what things do you like to do? I like to skate (roller), bowl, camp and go to the pool. We don't get alot of warm weather so when we do I like to go out and enjoy it. Plus my two boys, 13 and 11, love the water. I'm from Ohio so it seems like sunner is REALLY short. Is it warm where you live? Well, if you would like to write back I'd love to hear from you. Take care of yourself!!!

Your Pal- Vickie


I am 33 years old and was just diagnosed 6 years ago. I have two boys Michael who is 13 and Nathan who is 10. I'd love to meet some new people in the same boat I'm in and make new friends. Please feel free to write me anytime!!!
 
Vic
 
Meds: Zithromax, Cymbalta, Centrum, Calcium, Vit.D, Aquadeks, Lisinopril, Trazadone, Doxycycline, Augmentine, Bactrum, Avelox, Vit.C, Ibprofen, Furosimide, Cephalexine, Pulmazyme, Albuertol, Flonase, and finally Advair.
 
Diagnoses: CF, Bronchitis, Pneumonia, Cardiomyopathy
 
Lung capacity is 19%, O2 365 days a year.

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