Medicine Problems, Thoughts, Worries

[LiL1FiGhTiN4LiFe]

Hey my name is Meagan Im going to be 18 years old. My whole my Cf never bothered me until i was 9 years old and my little brother died from Cf and Lukemia. Now everything seems wrong. Im getting more and more sick in and out of hospitals and everytime i get sick i get scared and i hurt my faily and boyfriend. Everyone gets really mad when i dont tka emy medicine but they dont know what its like and never will. EVeryday i ownder which is better being alive or dead. I have a feeling there will never be a cure and i dont want to go through a lung transplant. Does anyone ever think about these things? Like when there gonna die? What its gonna be like? Are you scared? WHat do you wanna do? I do everyday and it seems like everyday i think about it more and more. Get @ ME
Meagan

 

[thelizardqueen]

I think about dieing sometimes, and I only think that's natural when you're dealing with a life long terminal illness. I wonder what it will be like, will it hurt, etc. That being said, I don't dwell on death. I would rather live then die. I would rather have fun and live everyday as if it were my last, then to think about death everyday and get depressed. That being said, you have to take your enzymes, you have to do your treatments, you have to do your physio. Because if you don't, you'll only get worse. You say that you're getting sicker and sicker, in and out of hospitals, but you're not doing your treatments. I guarantee you that if you stay on top of things, you will only feel better. As for lung transplants, I know that when the opportunity comes up, I will take it. Lung transplants are our last chance at life. You have to ask yourself, would you rather die before your time, or take the chance of a transplant and live. That's your choice to decide on. Yes, no one knows what its like to have CF unless you actually have it, but your boyfriend and family are right - you need to take your enzymes, you need to do your treatments, you need to do your physio to have a better life. Yes its hard, yes its annoying, but its something that's just part and parcel of CF. You can't change things, but you can make it better.

 

[Tess]

Hey Lil'1,

I do think about it all they time. My biggest fear 'growing up' 'teen years mostly', was sleeping over at a friends house and dieing in my sleep. Now that I'm older, and I have a 2year old lil' girl, I fear not being around for her if I were to die.

As far as just dieing goes, I'm not afraid to die. I worry about those who I'd be leaving behind; My Mom, Brothers and Sisters, Boyfriend, other family, friends, but mostly my Daughter. I don't want her to grow up without HER Mom! Though I do know that my memory would be kept alive for her, by My family if it did happen.

So I guess it's something I do think ALOT about but I try not to let it bother me too much and Live each day as it is my last there for there's no wasted time if I were to pass away.

Not sure if I've made much sense, but know your not alone in your thoughts.

 

[littledebbie]

Hey Meagan, I think about it, like most....when I'm not feeling good! <img src="i/expressions/face-icon-small-happy.gif" border="0"> Which of course means the sicker I get the more I think about it etc.<br><br> Though I think it's also natural to think about it a lot when you are your age becuase it's a natural time when people start mapping out their life and making big "life goals" like college or no, marriage or no, kids or no, house with picket fence...you follow me and here we are......uhmmm sick. Sick with this "Terminal" disease...gheez could it sound scarier even? So we think about all of these things and cross our fingers that we maybe get one or two. We can't blissfully take it all for granted that we can achieve all of this and more. We sort of pick and prioritze and then work our tails off to achieve. and make no mistake we have to work at least twice as hard to keep our bodies up and running and making forward progress in our lives.<br><br> The death thing is just sort of hanging out there always...we just have to keep on living in spite of it. I try to think of all my mini achievments as the grand middle finger to this disease. I do get sad though, I wil not achieve a few of the thigns I wanted to, which is not exactly a regret (as it wasn't for a lack of trying on my part) just more of a loss that makes me sad. But alas such is life for all.<br><br>To try to answer some of your questions if I can in a most uneducated way....by all accounts I have heard it is not typically a painful death, usually it's like falling asleep. Also the lung transplant thing i would never argue with you on, i myslef am not going that route, however I would suggest you try to keep your health up at least well enough to try to give yourself the most time possible to research it and be evaluated. It is not really the kind of thing I think you can decide until you and a team evaluate your specific case. I'm just saying don't close a door yet, leave options open. <br><br>And for crying out loud, not taking pills etc. I can sympathize to a point if you mean you forget on occassion becasue *gasp* I too sometimes still forget and I'm 26 stinkin years old, but if you are doing it in some tiny rebellion, well i for myself have always viewed not doing the basics as a passive suicide and I think that's kind of.....well selfish. Take some pills do a little airway clearance..it won't kill you (ha ha see I'm funny AND wise...wise@a..) Everyone knows i don't mind bemoaning the unfairness of my early doomedness so if you ever want to talk about it or vent feel free to e-mail me or check out my blog...there's plenty of whinning going on in there...you might want to bring some cheese.

 

[Faust]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Tess</b></i>

Hey Lil'1,



I do think about it all they time. My biggest fear 'growing up' 'teen years mostly', was sleeping over at a friends house and dieing in my sleep. Now that I'm older, and I have a 2year old lil' girl, I fear not being around for her if I were to die.



As far as just dieing goes, I'm not afraid to die. I worry about those who I'd be leaving behind; My Mom, Brothers and Sisters, Boyfriend, other family, friends, but mostly my Daughter. I don't want her to grow up without HER Mom! Though I do know that my memory would be kept alive for her, by My family if it did happen.



So I guess it's something I do think ALOT about but I try not to let it bother me too much and Live each day as it is my last there for there's no wasted time if I were to pass away.



Not sure if I've made much sense, but know your not alone in your thoughts.</end quote></div>


Really? that dying at a friends house in your sleep thing has to be the first time i've ever heard that. Me personally, i'm burnt out over thinking of dying/being afraid. I would be more pissed off if anything, about things I didn't get to accomplish, and hearing about the things i'm using now to keep my health where it is, way too late (if I would have heard about OO and some other things in my 20's, I could have started seriously working then, and my life would be WAY different now positively speaking).


Basically, don't let fear control you. We *ALL* live and die. We will all die at different times. I could live into my 60's or farther, or die next week either due to a weird CF related cause, or having 100 lbs of frozen ejected airplance sewage land on my head while listening to "Don't worry be happy". If you dwell on stuff, it will consume you. I know you can't help it due to your age, but trust me (i'm 35, and could live quite a while longer) noone knows when we are going to die, regardless if it's CF or whatever cause.


Live for today, and plan for your future. Most importantly, take proper care of yourself so you have a better chance at a decent future. I'm very grateful for living to the age that I have lived to, and for having the quality of life that I have now, that allows me to still be doing things at 35 with CF that some CF's much younger aren't able to do. But all of that means crap if I don't take care of myself to pave a path for this much appreciated good fortune.

Not taking care of yourself with CF would be like smoking like crazy, then finding out you have lung cancer, then it gets "cured", then you start smoking again. It just doesn't make sense. I'm not perfect, and if I died tomorrow I would surely have some regrets (though not many, I feel I have made some pretty good choices in life considering what I have been given to choose from), but one of the most important things i've learned from this life is that if you know you have to end up somewhere anyways (like death), don't let the fear consume you. You don't need religion to feel that way, you just need to realize that you can either be happy and live your heartbeats for all they are worth and end up in the same place, or be miserable and afraid and waste those heartbeats and end up in the same place. It's the choice we all have to make. Sadly the vast majority of "normal" people don't have to make this choice early on. Hence why many people with long term terminal diseases often have such nice outlooks on things.


I wish you the best. I know my teen years were rough, I probably wouldn't have listened to what i'm saying now back when I was your age either, but hopefully you eventually make the right decision.

 

[Nolimitmce]

oh yeh ive been there and it osunds like you are in worse shape than I am so I cant say I have walked in your shoes. I had alot of the same crap and didnt take my meds between like 15-20 literally like 5 years I did things to my body a normal person should not do but now that I am healthy and I feel the difference if i dont take them I realize its just retarded to not take your meds. If they arent working SEEK ANOTHER DOCTOR OR PROFESSIONAL OPINION...i won t even get into my story jus ttake my word for it.....anyways i have posted a couple of times that the anxiety and crap that comes with breaking into adulthood with CF is not adressed...you should talk to your doctor about it...i knew from personal experience what my mind and body worked with and all those antidepressants put me in la la land I jus ttake XAnax as needed and dont want to be hooked or benzo depenedent if yo uhave any other questions you can email me at EGANR134@Gmail.com...anyways i always think things could be worse....

Mike 22/, Cf & ( CFRD so they say !)

 

[anonymous]

i'm sorry you are having a hard time meagan. i'm sure your family only give you a hard time 'cos they are worried about you. please take care . <img src="i/expressions/face-icon-small-smile.gif" border="0"> janet, mum to joe. ( hope you don't mind me giving you advice, i'm seeing the other side 'cos my son has cf)

 

[JazzysMom]

For many of the years since dx I didnt do my treatments. I took my enzymes because that was an instant result if I didnt. I was able to "get away" with no treatments without it interferring life too much. I also didnt give the meds enough of a chance to work for me to see any difference. I went into the hospital occaisionally, had a blast of a time while in, came out & continued my life. No big deal.....up until 1/2000 when I got extremely sick & really thought I wasnt coming home. I thought my daughter would be left motherless a lot sooner then ever expected. I bounced back, but once I felt better I went back into the cycle of not doing my treatments until the next hospital admit. Then I realized I am bringing my death on earlier then needed. I now cant skip treatments without feeling it. I dont have the "luxury" of getting away with it. I dont know if doing my treatments over the years would have made an improvement in my overall health now, but I do know it certainly couldnt have hurt. I was kind of living for the day thinking my days were numbered. That was kind of how I was raised after my dx. Well here I am 31 years after dx looking back, kicking myself in the a$$ & now taking are of myself. I cant change the past for me, but I can try to make a difference to other younger CFers! You cant live in fear because then you arent living you are onlky existing. You cant avoid your CF forever. It will catch up with you because that is how CF works. Its not fun, but many people have to do things in life that arent fun and this is ours!

 

[anonymous]

I don't have CF, I can't imagine what it is like, even when I see my lover up all night coughing his brains out. He has CF, but I am sick as well in a way that society rarely accepts. I am a schitzophernic. My emotions are irrational at best, I communicate with people who sometimes don't even exist because of the severe chemical imbalance in my brain. Individually we're both sick, but together we find strength.
It does run through my mind now and then, you know, his death. I often find myself wondering-what can I give him that he can take with him when he goes. I haven't found that answer yet, but I know this. He is the most precious of all people in my life. He's rescued me from my own mental truama's so many times. He's opened my eyes to courage that I never knew I had. I stay up at night with him through coughing spells, I always want to take care of him. No matter what the price. I love his skinny, frail body, and his eyes are simply angelic, his ability to make me smile no matter how bad things get with my schitzophernia lifts me higher then any angel could ever take me, I adore his little G-tube(After I got past being afraid I'll hurt it it's cute because it is appart of him). Everything about him cannot be priced.
So now I'll say it, something my old friend told me to fight the mental episodes that may hurt me. It won't be sugar coated either...
How dare you! I bet you're just as priceless to your family weather you know it or not because it's not just about you. You're selfish, for depriving them of the gift that is YOU! You were sent to them by chance, and I can wager anything that they wouldn't have any other. They only get one of you, no replacements, no refunds! I'm sure they've worked hard to help you stay healthy because just like me and my boyfriend they want YOU to be with them for as long as possible.
When I first fell in love with my boyfriend I knew he had CF, I went to my cousin for advice and asked "What will I do if he dies, if I let myself fall too far in love with him-it will destroy me." he said "Heck, you could die tomorrow in a car accident on the way to denver." I realized then that ALL life is precious, all of your loved ones-no matter what the cost. I decided from that day forward to be with him till the very end. Because it is wonderful to have REAL love even if it is just for a while it is better then going without.
You have to take care of yourself sweetie, I didn't like my anti-psychotics but my boyfriend makes me take them because he feels the same. Just enjoy the people around you, and let them enjoy you...
Perhaps it is the memories they can give you and you can give them that is the thing anyone can take with them when they pass on.