Martha, what a great question....they really don't know...like I said, I don't follow any diagnosis typically, so it really is a medical conundrum to those docs of mine...boy, I have them earning thier money I think! It will be interesting if the docs ever connect the two, how odd would that be...linking a CF gene to neuro involvment....Most of my docs think this is a fluke,...that the CF became more pronounced when the neuro stuff started to happen because of the weak muscles and stuff. I probably had a "mild" form of CF, that's why the "asthmatic" symptoms (even they were atypical)....being put on a vent probablly just brought it out more, so now it is more obvious. So...who knows!
Like I have said before, I think it is my attitude that has kept me alive...I think I have said this, but I view each and every day that we are here as a gift, ready to be opened and to be done with it as we wish. I chose to live that gift the to the best I can, enjoy my kids and smell those flowers. People have asked how long I have left to live...I say as long as god wants, I don't try to dwell on what could happen to me in the future, I know my life isn't going to be extended into the "golden" years, but you know what, these are my golden years. I am here for now..I know that I can't have a transplant, so I will live with these lungs and my muscles. I am sitting here typing these messages, I look down and am so happy I still can do that, so many of my ALS buddies cannot do that, they simply don't have the muscles in their hands to type. Do you know how grateful I am that I can even type?? I can still walk 30 feet with a walker, that makes me ecstatic that I still have the muscles to even do that. I try to see the good in things that seem hopeless, if you look hard enough, the good can be seen. That is my philosophy...granted, it did take a long time to get to that....at firsst I was angry, I did go through grieving about losing my job and not being able to do it. I am not even sure when I turned the corner as to when I started to feel the way I do now. I am sure all of you have felt that at one point or another...anger or frustration about not being able to do something others could because of your disease. I guess I can say that I have accepted what is happening to me and that I am really okay.
Thank you all for listening to me and being there for me,
Hugs Cepaciagal
Like I have said before, I think it is my attitude that has kept me alive...I think I have said this, but I view each and every day that we are here as a gift, ready to be opened and to be done with it as we wish. I chose to live that gift the to the best I can, enjoy my kids and smell those flowers. People have asked how long I have left to live...I say as long as god wants, I don't try to dwell on what could happen to me in the future, I know my life isn't going to be extended into the "golden" years, but you know what, these are my golden years. I am here for now..I know that I can't have a transplant, so I will live with these lungs and my muscles. I am sitting here typing these messages, I look down and am so happy I still can do that, so many of my ALS buddies cannot do that, they simply don't have the muscles in their hands to type. Do you know how grateful I am that I can even type?? I can still walk 30 feet with a walker, that makes me ecstatic that I still have the muscles to even do that. I try to see the good in things that seem hopeless, if you look hard enough, the good can be seen. That is my philosophy...granted, it did take a long time to get to that....at firsst I was angry, I did go through grieving about losing my job and not being able to do it. I am not even sure when I turned the corner as to when I started to feel the way I do now. I am sure all of you have felt that at one point or another...anger or frustration about not being able to do something others could because of your disease. I guess I can say that I have accepted what is happening to me and that I am really okay.
Thank you all for listening to me and being there for me,
Hugs Cepaciagal