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Am I Ruining My Future?

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Posted 9/30/2006 10:41 PM (GMT -7)
Hello all again! My name is Emily, I'm almost 17, and i have known about my CF since i was 2. When they discovered my cf was the only time I have ever been hospitalized for anything cf related (then it was a lung infection and pseudemonas). A few years after that, and since then, my doctors always told me that I was one of the healthiest cf patients in that hospital. Up until about 4 yrs ago, I was great with my treatments, I did my airway clearance when i was supposed to, and then when i got a vest, i did that too, never missing one.

Within the past 4 years though, I have stopped doing my treatments. The number of times I did it a day decreased, then the number of times in a week, and now, months. It was never a concious effort, I never just sat and said "you kno i really just don't want to do my treatments today." It just happened. I was never sick, and so I never really thought about doing them; it kinda slipped my mind. I kno that some of you may think i'm crazy; that I'm stupid, and should be old enough to take care of this responsibly; and i wish i was. I wish i had some kind of motivation to taking better care of myself, but i can't seem to find any. Sure, whenever i get a bad cold, i do a couple here and there. As i said before, i've been healthy for quite a few yrs, but i've started getting sicker easier, catching almost everything that ever goes around, and still i can't get myself motivated.

My doctors worry about this, and no matter what they say, my treatment efficiency never goes up. I'm afraid that I think to highly abt my past and fairly present good health. I was once told "You may be fine now, but as with a lot of cases, your luck can change in the snap of a finger (exaggeration) and a fast downward spiral."

 

Am i ruining my future?

Posted 10/1/2006 7:52 AM (GMT -7)
Yes Emily, you are ruining your life. you are very lucky to have cf and be healthy. you should try to keep that health. I jut got finished doing my vest and coughing my head off. You my friend are lucky indeed. Take care of yourself. be thankful.
Posted 10/4/2006 12:35 PM (GMT -7)
Hi Emily I know exactly what you mean I went through the same thing. I am very healthy only been to the hospital twice, but I was also very active and so I always said to myself, hey, i'm running around for 3hours in my sports why do I need a treatment? So i would skip. But now I'm not as active and I know that if I dont do some kind of exercie then I must do my treatments and vest. You are the only one that know how you feel and so you may say I don't need it today but cf i all about maintaince. If we don't keep up with keeping oursleves healthy then we could fall behind the eight ball and make it harder for oursleves later on. Try to do your best, its alot of work but will pay off later on.
Posted 10/4/2006 3:56 PM (GMT -7)
Thank you for your responses. I'm trying to get better..just not having much progress so far
With Love From Em

 

"I may never meet you, know you, touch you, or kiss you, but I love each and every one of you with all of my heart"

                           -Unknown Author-

Posted 10/5/2006 2:50 PM (GMT -7)

I know exactly how you feel Emily, I've never been in the hospital because of my CF and I hardly ever use my vest of do my treatments. Just like you I lack that self discipline to keep myself on track. Just think, the harder you work at keeping healthy, the more time you'll have to enjoy your health.

          ~Lance

Posted 11/11/2006 8:58 PM (GMT -7)

Hello Emily!

I am 18 years old, and I know exactly where you're coming from.  I too, am not as diligent as I should be with my medicines.  I do my pulomozyne neb everyday, but that is pretty much the only thing that I do consistantly when I should.  I too, and trying be more disciplen with doing my meds.  My family and even my boyfriend are trying to help me get better with it.  One of the tactics that we're trying, which I don't know if it would work for you, but I am really into music and such, especially the band My Chemical Romance, so when ever I need to do another neb, or do PT or something along thoes lines we're trying to make it so that's is now basically the time that I am forced to just sit down, relax (Though PT isn't the most relaxing thing in the world...)and watch a My Chem video or go on the computer or something along thoes lines.  Basically, since I pretty much need to do this stuff, since I have actually been hospitalized 2 times in the last 3-4 months for CF and I wouldn't be completely surprised if another one was somewhat on the horizon for in a few months, so I know the importance, but I completely get what you mean by 'being old enough to take care of yourself and such, and not being motivated' because I am in the same boat as you.  I don't know if you have a boyfriend/ significant other, but another thing that we're trying is trying to teach my boyfriend how to give me PT, I know it sounds silly, but I'm usually with him, and he wants to help me get better so why not put the two together?

I hope that this has been at least somewhat helpful, and I hope that it works out for you!!

-Alex

Posted 11/26/2006 12:37 AM (GMT -7)
Thank you Alex.

You are so lucky to have people around you who care so much abt you taking care of yourself; don't get me wrong, my family loves me and cares about my wellbeing, but they are not the most motivating of people. You see I'm home alone all the time; because of too much sickness last yr, my parents decided that me schooling at home would be better. So now I am online homeschooling with 1 sister at school, another sister and brother in college, and two parents that work, see, always alone. And that just makes it even harder for me to become motivated to do my treatments and meds; there's no one to hassle me abt it. I do not have a boyfriend or significant other; and I'm not to worried abt that because I am only just turning 17. I did used to have one, and he was my best friend/cheerleader/boyfriend type of figure. For four yrs he was in my life, always there for me and begging me to take care of myself. With him there I always could; he was my window to the world outside when I was sick. Then last yr, I got really sick and missed abt a month of school (the reason known later as diagnosed with diabetes, which caused my sickness) and while I was gone, it was like he and all my other friends forgot I was alive. I never got a single call or e-mail or anything in the month I was sick. These people had been my world for 5 yrs, 10 some of them, and they were all suddenly gone. For a while, i know it sounds dramatic, but I almost didn't care what happened to me anymore. I went through some serious depression and did things that to this day I am not proud of and am just overcoming. In fact, I came to despise myself for the way I am, the way I was born, and I still feel that way for most of the time.

I think that is why I cannot motivate myself enough. That if I completely ignore my problem, it will go away; it never existed.

Love Em!

 

          "When I'm stuck in a day, That's gray, And lonely, I just stick out my chin, And Grin...The Sun'll come out, Tomorrow!"

Posted Today 12:28 AM (GMT -7)
 Hey, my name is Caitlin and I'm 15 and I was dignosed with cf when I was about 3. I was mostly healthy all the time until last year when I got really sick and had to go to the hospital for the first time for cf problems. I missed alot of school but eventually got through it. But this year hasn't been much different, I've missed alomst the whole first semester of school and now I'm going to go to this school that has a homeschooling program, which I'm not too excited about. But anyways I just wanted to let you know that I know how you feel, I've been depressed for a year and have been going to therapy and taking medication for it. I've had one best friend that has stayed with me through it all, but besides that I haven't had the chance to make any more friends and haven't been having a lot of a social life. But I know just how you feel about not liking yourself just by the fact that you were born with cf. I also use to almost never do any of my treatments or vest, but now I have gotten in to a routine of doing it twice a day and I think the only way I've gotten use to doing it is just by not letting myself do anything else until I do my treatments. Every morning when I wake up before I eat or do anything I try to do my treatments right away just to get them over with, then at night I usually do them 2 hours after I have dinner and wash my face and everything. So I just think if you do them at a certain time for the first couple of days or week, then you just get into the routine of it. So thats all I can say about that and I hope it helps!
Posted 2/7/2007 7:48 PM (GMT -7)

Hi,

I am kind of like you, I have been healthy for the past 14 years and been hospitalised 3 times. I NEVER do physio even though I have a flutter.....except maybe when I'm in hospital or sick at home. My doctor just insists tthat I just continue to take my meds and keep swimming, running and doing heaps of sport. I sometimes find it hard to find 'time' to do the flutter and stuff cos i'm supposed to do it every day but i don't. So i also find it hard to motivate myself because it's just soooo boring, breath out, breath out, blah blah blah. eyes When I had to inhale Tobra I used to read a book and then the taste used to make me wanna throw up so I had a stash of tic tacs ready to pour into my mouth. I know that taking your meds is important to good health and all that but they need to understand that it can be boring and feels like it isn't doing anything. My mum is a doctor and so she lectures me even more! She also rings my doctor when the slightest thing is wrong, cos I've had osteomyletis and peri-arthritis in my ankle and I still have ankle problems after all the antibiotics to cure it! That's about all I can think about now! tongue

Posted 2/14/2007 1:41 PM (GMT -7)
I am sorry everyone seems so bleak.  It is my intention to send you to a site about Goji Stories and there is a person there who has had CF for most all his life and he is 30 yrs. old now, who started drinking that goji juice and he says he and his wife both are bouncing off the wall as his health has improved so much.  He has been in and out of the hospitals every year and this year has been a lot worse.  Those goji stories start there and it tells you where to go for more that covers all the testimonies. 

http://www.geocities.com/west19322003/tribute_flag.html

 If you like fun you will like to read about the hemorrhoids that could kill an elephant that the author has on another website.  It is:  http://hometown.aol.com/donwest70/page1.html    There is no money involved as he isn't trying to sell you anything but it can give you some valuable information.

Posted 6/7/2007 12:09 AM (GMT -7)

pahiatua said...

Hi,

I am kind of like you, I have been healthy for the past 14 years and been hospitalised 3 times. I NEVER do physio even though I have a flutter.....except maybe when I'm in hospital or sick at home. My doctor just insists tthat I just continue to take my meds and keep swimming, running and doing heaps of sport. I sometimes find it hard to find 'time' to do the flutter and stuff cos i'm supposed to do it every day but i don't. So i also find it hard to motivate myself because it's just soooo boring, breath out, breath out, blah blah blah. eyes When I had to inhale Tobra I used to read a book and then the taste used to make me wanna throw up so I had a stash of tic tacs ready to pour into my mouth. I know that taking your meds is important to good health and all that but they need to understand that it can be boring and feels like it isn't doing anything. My mum is a doctor and so she lectures me even more! She also rings my doctor when the slightest thing is wrong, cos I've had osteomyletis and peri-arthritis in my ankle and I still have ankle problems after all the antibiotics to cure it! That's about all I can think about now! tongue

Haha, wow, you sound just like me, but a bit more active. I'm still not really doing my treatments, except now I'm actually getting sick! For the first time ever, my x-rays showed lung scarring (that wasn't there last year I might add) and signs of Bronchiectasis (also wasn't ever there). I think I pretty much screwed myself over. And about those inhale things like Tobi and the Saline solution stuff, Jolly Ranchers work waayyyy better than tic tacs!

I totally get what you mean about the treatments being boring and stuff. But, for the first time ever, I did my own appointment! Like, I asked my mom to stay in the waiting room or something, because I wanted to handle it on my own. A definite step up the maturity ladder in my opinion. But I have to get used to it, cuz I only get 2 more visits to the clinic I go to now, and have gone to for 15 years before I have to move to an adult hospital in January (sniff). So I have to get used to doing EVERYTHING on my own. I'm kind of excited.  


With Love From Em!

 

"I may never meet you, know you, touch you, or kiss you, but I love each and every one of you with all of my heart"

                           -Unknown Author-

 



 

Posted 6/8/2007 2:19 PM (GMT -7)
I don't think depression is a symptom of CF, it's just that everyone handles the hard stuff in life differently. I don't think treatments and meds cause depression, not for me anyways. Taking my meds and physio (whenever I actually do it) is like second nature, and it doesn't make me feel any different at all. I just never do treatments in front of anyone outside the family. For me, the only problem I ever had was being different, being sick all the time, and not really having a social life because I got sick. Not all cfer's suffer depression, just some. I go through it at times, but it's not a constant thing.

 

I feel for you, Jess, and your family and I'm wishing her the best!

With Love From Em!

 

"I may never meet you, know you, touch you, or kiss you, but I love each and every one of you with all of my heart"

                           -Unknown Author-

 



 

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