tag:blogger.com,1999:blog-8963729539410388556.post5218803318307947280..comments2023-10-25T04:10:11.521-05:00Comments on Learning To Live: Things You Probably Don't KnowCarlahttp://www.blogger.com/profile/15102582974921321651noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-8963729539410388556.post-16875989556890170442009-04-20T09:16:00.000-05:002009-04-20T09:16:00.000-05:00I don't care if I offend people. I have cf and lun...I don't care if I offend people. I have cf and lungs filled with cepacia and MRSA, but the idea that I should begrudge people who are healthy has never crossed my mind. They have invisible problems too, making it out of line to try and make comparisons. I think that despite being hard, only focusing on ones own problems prevents one from seeing the joy in life and so they never live.<br /> Additionally I am a member of "My parents beated me" and will defend it. I take offense to previous comments about this group. I do my treatments everyday and take health so seriously that I refuse even a simple beer. I wake up at 4:30AM (vs 10AM) to have all my treatments and exercise to be ready by 8AM. I also manage to force myself to swim 1.5 hours every day to clear my lungs. If this is being clueless and not caring I guess I need a new definition. <br /> The difference comes because the people in this group are positive and love to live life instead of complain and make things worse on themselves. They deal with it. What makes them great is they are both honest and positive. It is no one's responsibility but your own to live life and enjoy it because the world doesn't owe anyone anything. People who get a lot from life are those that work for it and realize that no one owes them anything for the simple fact they exist.anonymoushttps://www.blogger.com/profile/08292474900522406505noreply@blogger.comtag:blogger.com,1999:blog-8963729539410388556.post-66262003807156589752009-04-20T08:25:00.000-05:002009-04-20T08:25:00.000-05:00I have thought about commenting a few times and de...I have thought about commenting a few times and decided not to because I didn't want to offend you or make you mad. I don't know if you read my blog but I am 27 I am on O2 most of the day I am on the tx waiting list and I get up every morning at 8:30 (on weekends I sleep in till 9:30.) I get up do my treatments/vest eat breakfast and then I work (my job lets me work from home till after my tx) and that's all with an FEV1 I can almost guarantee is lower than yours. I am not saying these things to make you mad but when I read your posts about you sleeping all day I just know that isn't beneficial for you. Also, I am sure you don't want to hear this either but has your doctor ever recommended sleeping with O2? If your lungs are as crappy as you say (I don't know) then you might benefit from that. You would get a better night sleep which will have you feeling more refreshed when you wake up and not feel so tired through out the day because you aren't working so hard to breath. I know its a crappy thing to have to do but maybe at this point you have to put aside things that you don't want to do to start feeling better and being able to do more fun things during the day. Again I hope you don't get mad about this I really just wanted to help.Jenhttps://www.blogger.com/profile/00406895488412085461noreply@blogger.comtag:blogger.com,1999:blog-8963729539410388556.post-21347650696860596822009-04-19T11:59:00.000-05:002009-04-19T11:59:00.000-05:00As another fellow CF'er, I understand where youre ...As another fellow CF'er, I understand where youre coming from. You have some killer bacteria in those already crapped out lungs and guess what! Its damn hard to fight it... <br /><br />One time this "friend" of mine said "Cf is your excuse for everything" as I was explaining why I didnt do a homework assignment or why I didnt go to class a certain day. And I said to him, your right b/c if you had to fight an infection FOREVER you would be damn tired too. I told him, you know when you get a cold in the winter and you cough up green stuff, well, thats how I feel 24/7. <br /><br />I do understand the importance of trying to do exercise when you do have energy.. its kinda of a double edged sword for me... I cant breath but on those few occasions when i do keep up with something it does increase my capacity by a bit, but is sooo hard. <br /><br />And as for "My parents Beated Me" most of them on there are clueless, sorry, thats my opinion and its why I left the group on facebook. Half of them dont even do their treatments anyways. <br /><br />Sorry so long. I just feel like I understand a lot of how you feel.Tabithahttps://www.blogger.com/profile/13442703808384735458noreply@blogger.comtag:blogger.com,1999:blog-8963729539410388556.post-61517700482847937892009-04-19T11:43:00.000-05:002009-04-19T11:43:00.000-05:00I understand it gets difficult, but you really nee...I understand it gets difficult, but you really need to try and push through it. Talk to some of the people in "My Parents Beated Me". They are getting by with shit for lungs and I think you can too. I understand that when you don't have a lot of oxygen, that it's easy to get tired a lot, but if you get up and do things you will find it gets easier as the day progresses. My lungs are shitting out on me too right now and I'm still pushing through it when I should probably be in the hospital, but I'm still doing my school and an internship and I'm probably getting down to the lowest lung capacity/function I have ever had. Sometimes you just need to try and suck it up, no matter how hard it seems. And those are my words of advice. Sorry if they seem offensive.gahitstonihttps://www.blogger.com/profile/01669592241640919867noreply@blogger.com