Wow, thanks for all the replies! Sorry it took me a while to get back here.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Allansarmy</b></i> I thought you might want to see what it is like coming from a Dad of a CF boy age 15. First let me tell you about my sister-n-law, a very special person that I was honored to have known. My wife's sister had CF passing at the age of 27 and having lived 5 years with a double lung transplant. The point I am making with her is that she 'lived'. She lived everyday as if it were her last. She laughed everyday, even when she was on her last day she found something to laugh at. Laughter is contagious, she made those around her not want to feel sorry for her. She always hated that, unless it was her birthday, she would tell you everything she wanted a month ahead of time written out for all to see lol. She was not shy when it came to gifts she always said. She always said, "everyday you have to find something to be thankful for". One day I went to her house and found sticky notes all over the wall and the bathroom mirror, one of them read "Thank you God for toilet paper". She shrugged <img src=""> Funny story coming your way ----- Her name was Elisa pronounced "Ee-Lisa", but when she went to church the pastor Always pronounced her name wrong. One day, when she was very weak about 78 pounds and on Oxygen and in a wheel chair, we wheeled her down to the alter. About 20 people gathered around her reaching their arms out in prayer "some speaking in tongues", the tension was very serious and people were weeping to see their most dedicated church goer in dire stress and within her last week to live on this earth. The pastor kept calling her name out "ALICIA" he would say over and over again. She grabbed my arm.... leaned me down by her mouth to my ear.... NO WONDER I AM NOT GETTING BETTER, she said, THEY KEEP PRAYING FOR SOME GIRL NAMED ALICIA!. Tears ran down my face, not from sadness lol. I was very close to Elisa, and think about her often. My son who is 15 still remembers her and he acts a lot like her. He is stubborn, bullheaded, but most of all he has faith. He told me once that he fears dying before he reaches 30. For some reason, 30 is the magic number for him. Some of you are over 30. So the only advice I will can give from a Dad that also has several friends with CF, shoot for goals that are within reach and live life everyday no matter what. Are you allowed to have downer days where you feel depressed, yes you are, even healthy people get this way. Keep your head high and try not to dwell on whats to come. We all pass from this earth, don't spend your days doubting, and wonder what could have been. Wish all of you the best of luck in 2012!</end quote>
Thank you for your story. I absolutely understand that living for today and not dwelling in the "what ifs" is a more purposeful way to live. But sometimes, when I'm literally stuck (in the house, in the hospital, doing RT and coughing up mucous for hours, in pain from pancreatitis, etc.), my mind wanders. I do have a toolbox of coping mechanisms, but sometimes I'm too beat to employ them.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>athanasia</b></i>.... My point to my ramblings is that I still think about death, especially now that I have so much to lose. But every time I do, I think about all of the blessings that I have been given, the miracles that I have not only witnessed but have been a part of, and all the times that He could have taken me away if He wanted but hasn't. It then makes me think that I could let fear control me and miss out or I can let it drive me to make sure that I do everything on my list first. Take in every breath, every moment, and enjoy every person in your life as you have them. Don't worry about the next one or what may happen. I prey you find that peaceful feeling (again, without extreme issues leading you to it) and let it wash over you. No one knows how many breaths we are going to get in this life but I have learned that each one, no matter how much effort it takes me to get it, is the greatest breath yet. Sorry for such a long reply, I just hope it helps.</end quote>
I make sure to count my blessings every day. In fact, each night as I lay in bed, part of my "routine" is thanking God for all of the blessings in my life, and to help me find the strength and courage to manage everything in my life, and to give me whatever I need to help others. I have learned that my purpose on earth is to help others through their own personal struggles using my own experiences and research. It has to be, because I get phone calls from my family and friends, from people I haven't talked to in 15 years, to even people I barely know, confiding in me and asking for assistance. I've helped a number of people navigate the medical system. I know that my "suffering" for lack of a better term, is what has given me the ability to educate, support, motivate and listen to those who are confused, scared and upset. So, yeah, I consider myself very lucky to know my life purpose.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> I agree quite a lot with anien2. I am not religious, so that doesn't factor into my thoughts on an afterlife. Obviously, cultures have been fixated on the afterlife as far as we have historic record, as others have mentioned. Probably the best evidence of the "other side" we have is to ask yourself what it was like before you were born? Don't remember anything, do you? Nothingness. I'm ok with that.</end quote>
See, THAT scares the heck out me. The lack on consciousness. Just, nothing. My religion teaches me otherwise, but even the strongest faith can waver at times.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>TheAmazingBD</b></i> I am not afraid to die but I do visualize and dream about my death and what my loved ones will have to deal with when I pass. My thoughts and dreams usually detail HOW I die, the reactions of my loved ones, what is done with my belongings, how they pay off my bills and access my computer!! CRAZY STUFF...but logical thoughts. I've thought about my death from a car accident to lungs collapsing. I've never really believed that CF would kill me. I still doubt that. I let the thoughts pass and realize we are all going to die and there is no telling when or how. For me, it is most important to cherish my LIFE and in death, I'll deal with it when it happens. wishing you a peaceful mind. xo</end quote>
I do fear that my husband will be in so much pain if I die before he does, as much as I would be in pain if he went first. That breaks my heart. I hope that if I go first, he finds someone to love him, take care of him, and be everything that I couldn't.
I did have some other answers but the computer ate them. Thank you for replying to my question.
Hugs and health,
Kitty
