littledebbie
New member
First I would like to state this topic is not being posted in the interest of forum drama. It is actually in response to more than one remark I have noticed lately about how people are either focused on death or living in sunshine care bear land. I think we know which club I'm in(that's a joke at me..yes). I would like to say I'm going to make an attempt to be more tolerant of the care bears. I would appreciate the same respect in turn if possible.<br><br>i know we all know this but I think once in a while we could probably use a reminder so here it goes. We all have (or are close to someone who has/had) CF. The End. For the most part that is where are similarities to each other begin and end. When it comes to the aspects of CF - medications, Picc lines, ports, SSI, etc. We can exchange pretty cut and dry information. However, when it comes to how to live life with this disease and how to keep up our fight...well we all have very different views on that.<br><br>We all fight differently. Much like some might be better suited to say the Air Force while some join the Navy, we all have different ways of fighting. Neither the Navy or Air Force is less valuable, unless of course you ask an officer in one or the other (joke). Some people fight better looking at the bright side all the time. Others fight better keeping death in front of them like the foe they are boxing with. Some of us can already see the end of the battle and are planning our last stand (because we fight to the end so if we go down, we go swinging). What I think happens here on the forum sometimes is a CFer or family etc. who is in one stage of the battle runs into someone else in another stage and they do not understand what the other is talking about.<br><br>For instance if navy man who was currently involved in just keeping peace and patrolling or something on one side of the world ran into Air Force person who is flying dangerous missions during war time on the other side of the world they would probably have different views on ..being in the military today, on coping with being away from home, on plans for the future. Neither would be wrong but they would probably have very different views. Also, I don't know that a Navy man would know what how to fly a plane if he suddenly found him self sitting in one. That doesn't make him an idiot...he just doesn't have that experience.<br><br>I guess what I'm trying to say is I think a lot of people who are so "up" all the time are just built different or have not experienced the same things as the "circle of life" crowd. Also, i think we have varying ideas on what is depressing. To me talking about death is not depressing always. I know to some it is. To me death is to life, as pain is to joy. They co-exist a lot and one makes you just appreciate the other all the more. <br><br>Also, I think it's important to remmebr that here we are sharing pretty much one part of ourselves....the CFish part. It is a part that I think for a lot of us does not get much time in our real life. Why, because we are busy LIVING! So if in coming here some do talk about death to the few people who won't say "don't talk like that, i don't want to hear you say that, it hurts me to think of it" and will have some understanding, well I'm sorry that upsets some people but, i don't really understand why anyone seems so surprised there's talk about dying going on here?<br><br>I know I have gotten into it with a few people who have come on here and shared they're inspiring stories and their ripe old age and given the "keep hope alive speech". I want it to be known I am happy for you. I'm glad you are doing well. i find a lot of your stories truly encouraging that progress is possible being made. the problem I have had is the condemnation that is sometimes placed towards others outlooks. And insinuations that a positive attitude can actually keep you alive. That is where i jump off your inspiration wagon. i know usually you do not intend to insinuate that and insult the memory of those that have gone before us...but that is how it comes across and truthfully it's insulting to me. It's like saying to me...Debbie you just have a poor attitude, you must not really want to live, you must be weak, and feeling sorry for yourself, you must be dumb and have boughten into all that Death crap everyone has been yammering at you all these years. well the facts are I have given this disease a run for it's money and I have gotten a lot of good living done while it was at it. Which to me is the victory boogie on this dumb diseases butt. My PFT's have slowly been slipping since Pseudo set up house in my lungs at the age of 6. that was 20 yrs ago. Just by losing a smidgen of lung function a year I am now sucking the bottom of the pond here. But you know what, I'm still swinging. i am planning mini vacations and buy new shoes, getting pedicures, going on blind dates, working 30 hrs a week, living on my own. I am LIVING. and I Am DYING. It is not one or the other. I keep my head up. I have bad days I have good days. I am fighting. I will lose my battle eventually, but I will not have been conquered. I lived, i lived hard, please don't let anyone ever say I was weak. i would like to see others live my life on my O2 sats with my lung function. Weak my rear end. Chuck Norris wouldn't last a week in my Coach heels.<br><br>I realize others here have better PFT's than me. i realize some people here have never been on IV drugs. Some have had transplants, some have lost loved ones. Some people work some don't some will be able to have kids some won't. Some take good care of themselves, others not so much. Some people were diagnosed young and have been sick every day of their lives. Some have had a slow progression, some have rough spots, some weren't really sick up until they got very sick and died, some didn't know they had CF until they tried to conceive, some didn't know they had CF until they were 60, it's a crazy disease. All I'm trying to again point out is we all are in very different stages with this disease. And it is one thing to know that one day this will be your reality and another to know <i>today this is your reality</i>. I don't want to bring people down (or I guess what it appears people feel is "down") and I don't want to knock other peoples good fortune. I think all I'm saying is if you find yourself wondering "why are they so down?" maybe you should think for a second, remember your on the CF forum. i know their are a lot of friendships here but we all came because of CF (a chronic fatal disease...that's what it is I'm not lending drama or trying to be scary here). It was called a childhood disease for a reason, a lot of people died in childhood, some still do, young adults still are. if you are not one of them that's is wonderful, amazing, inspirational, please don't make us dying downers feel unwelcome to share our feelings. i would also like to say I usually stick this kind of thing in my blog but with a this junk on here lately I figured it couldn't make things much worse (light forum humor).<br><br>All I'm trying to say with this very LONG post is..... I will try to be kinder to those who fight this disease with different weapons than myself. I hope others are intersted as well in trying to mend a few fences here. I will still use my blog for all of my wah wah wahness...as it is my spot and it gives me a space to let steam off about where i am in the fight. Personal differences aside we are all fighting the same crap disease I for one am going to try to keep that in my mind while browsing the forum. <br><br> That's all I had to say, thanks, kudos to you if you read the entire thing!