I will be 39 tomorrow and I don't think of myself as having a "terminal" illness. I really don't understand trying to live with this label. There are so many different ranges of CF, with people living long, relatively normal lives. My mom never explained things to me about having a serioius disease, but agreed with me that what it said in the medical books defied what really seemed to be happening to me with my CF. Of course, my case was completely different because of not finding out til I was 18, despite a life of sickness. My younger brother, 34, is living well after a successful double-lung transplant last October. And now, I have to watch my older brother raise his son, 1 1/2 who was diagnosed with CF. Even between my brother with CF and I, is a big difference in attitude toward the CF. I spent alot of time fighting the CF, exercising, trying to find supplements that helped, drinking alot of water, doing whatever I could in my power to affect the CF. My brother seemed to take all of the medical literature to heart about this being a terminal disease, and therefore lost any power he had to fight it. We are blessed that his transplant was successful and he can live a better life now. One can argue that I have a mild disease, which is what I have heard for years, but I've been sick and I fight my way back. Is it that I have a mild disease, or is it that I somehow have developed a sense inside that I can fight the CF, that it isn't terminal or bigger than me. I have seen the difference in CFers lives who have different attitudes and also I've watched how my brother and I have lived our lives. One can choose the attitude and approach in life that they have toward the CF.
I think the greatest thing my mom gave me was the freedom of making up my own mind of what this CF really was. I don't really get the part about telling the child he has a terminal illness, with all due respect. That is a label medical people made up, even people with cancer, supposedly terminal, aren't always terminal. If your daughter hears from you that she is terminal, that is what she will think of herself. I think there is great power in a person's attitude of the CF, that directly affects the rate of illness. Which CFers are healthiest, the ones that live their lives as normal as they can, and still take care of their CF. Noone really knows how long a CFer will live, or how healthy he/she is going to be. I know that your innocent question wasn't meant to upset anyone, but it angers me, I'm sorry.
In my life, I've seen my fellow cfers and the way they either think of themself or are treated by their parents and to me it makes all the difference in this disease. As crappy as my growing up years were to not know I had CF, I consider it a great blessing that by time I did know, that I was able to make up my mind as to what CF is. I would ask you to let your daughter make up her mind as to what it means to her and how much she is going to let it affect her life. I think the advice that Lyndsey gave you was wonderful about talking openly with your daughter when she is old enough to comprehend certain issues such as terminal. It's a word other people made to label the disease, but each person is different.
I've been raised to really believe that what one thinks about most, subconsciously programs the direction of your life. The power of the mind is a great thing. If one is walking around thinking, I have a terminal illness, I'm dying, my CF is fatal, what kind of life can one live. The person would walk around feeling sorry for themself everyday, every minute of their life. When I hear these descriptions, I don't feel connected that they are the same thing that I live with.
Guess, I am from the free thinking school of thought. I think I'd be angry if my mother told me that my CF was terminal. I know I am angry at the books for saying that, because guess what I'm still here. All of the things that i did not let myself do at the age of eighteen through thirty because i had cf and wasn't going to live long anyways. It's taken me until 33 to understand I have CF and to live the life I was given the best I can. Some of us aren't terminal and then you are left with a life that you could of did more with. Just my thoughts. Let her live the best life that she was given, don't fill her mind with ideas to program how long her life is.
Michelle 39w/cf
I think the greatest thing my mom gave me was the freedom of making up my own mind of what this CF really was. I don't really get the part about telling the child he has a terminal illness, with all due respect. That is a label medical people made up, even people with cancer, supposedly terminal, aren't always terminal. If your daughter hears from you that she is terminal, that is what she will think of herself. I think there is great power in a person's attitude of the CF, that directly affects the rate of illness. Which CFers are healthiest, the ones that live their lives as normal as they can, and still take care of their CF. Noone really knows how long a CFer will live, or how healthy he/she is going to be. I know that your innocent question wasn't meant to upset anyone, but it angers me, I'm sorry.
In my life, I've seen my fellow cfers and the way they either think of themself or are treated by their parents and to me it makes all the difference in this disease. As crappy as my growing up years were to not know I had CF, I consider it a great blessing that by time I did know, that I was able to make up my mind as to what CF is. I would ask you to let your daughter make up her mind as to what it means to her and how much she is going to let it affect her life. I think the advice that Lyndsey gave you was wonderful about talking openly with your daughter when she is old enough to comprehend certain issues such as terminal. It's a word other people made to label the disease, but each person is different.
I've been raised to really believe that what one thinks about most, subconsciously programs the direction of your life. The power of the mind is a great thing. If one is walking around thinking, I have a terminal illness, I'm dying, my CF is fatal, what kind of life can one live. The person would walk around feeling sorry for themself everyday, every minute of their life. When I hear these descriptions, I don't feel connected that they are the same thing that I live with.
Guess, I am from the free thinking school of thought. I think I'd be angry if my mother told me that my CF was terminal. I know I am angry at the books for saying that, because guess what I'm still here. All of the things that i did not let myself do at the age of eighteen through thirty because i had cf and wasn't going to live long anyways. It's taken me until 33 to understand I have CF and to live the life I was given the best I can. Some of us aren't terminal and then you are left with a life that you could of did more with. Just my thoughts. Let her live the best life that she was given, don't fill her mind with ideas to program how long her life is.
Michelle 39w/cf