Elaine Posted February 28, 2004 Share Posted February 28, 2004 I have thought so much about the thread Mo started on being "alone" while she fought this battle called LC for days now. My heart breaks each time I read it. Lots of tears. Beautiful love stories. Strong people fighting and doing our best to make it through days we never ever asked for nor deserve. But that is life, as someone else on here said. Just wish it wasn't so. I do think that watching and even the thought of having to be aware that one's loved ones are being put through so much has got to be the hardest thing I have ever faced--especially knowing my own actions had something to do with it. I know, I know, that guilt is not serving me nor does it serve anyone well, but that's the truth of the matter for me. And I also know that most all diseases are in some way or another lifestyle related as well as genetic--same as lc and AIDS. However, our pc society, the same "culture" if you will, that "sold" most of us cigerettes when we were just children, has now turned its back on us who they call "weak" and have done what it has always done--blamed the "victim"--not just smokers--but think back--"welfare moms", AIDS sufferers, poor people--you name it. The self-proclaimed "elite" has always been holier than thou. And I would be lying to myself, if I even tried to suggest that I have not in some way or another, fallen into the guilt trip that permeates the messages in our culture. I must take responsiblity for my actions, but at the same time I know that like most things, responsibility needs to be and should be a shared thing. In the 1980s, people could smoke in hospital rooms--I know, I did it. In the 1970s you could smoke in college classrooms--I know, I did it. In the 1960s, you could buy cigerettes out of vending machines that were out of sight of adults, for a quarter--I know, I did it. Southern politicians (sorry southerners) have kept the tobacco industry in big dollars, regardless of the so-called "luxury" taxes. One thing they have done is created markets in "developing countries" where cigerettes are being again shipped and marketed to children. And when we complain about our health care system, we also ought to think about the health care system of countries, that in a few years, will also have an epidemic of young lc survivors/sufferers. And for those, young and old, who have lc and who never smoked or who quit smoking years before dx, you, too, now are suffering from the same "mentality" that keeps the stigma on this disease. My Dr. said that "never smokers" get lc because they grew up in homes of smokers or married smokers--I know from this board that that is not the case. Too many people are doing their darned awful best to put a 'smokers only' blanket on this problem. I guess it just simplifies things for them. I guess it makes it easier to turn one's back and rationalize the sorry state of the medical research and lack of compassion in our society for those groups who "we" feel "we" are somehow immune from. When I walk into my current Drs. office, I feel like I have the plague. I know I need find a new Dr., but the feeling he and some of the others showed me from the first, I feel will haunt me throughout my struggle. Maybe I am too sensitve, I don't know. But what was said to me and the way it was said, was shameful. I am a person. And like one of my new heroes, ZPacific said, "love me for my strenghts and my weaknesses." Or if not love me, then have the decency to accept that as humans none of us are perfect. I heard a curious thing the other day on Catholic radio. A priest was saying one of the most frightening things about our present day society is that he has parishoners who have come to him and said, "I don't go to confession because I can't think of anything I have done wrong." Not just a few people, but a lot he said. That shocked me, being a guilt stricken Lutheran from the midwest--lol. But , I murdered no one. I obeyed most laws (OK I have been known to speed), I raised my children to be caring and thoughtful people. I did the best I could, most of the time. And never intentinally hurt anyone. And treated all people with respect. But I am now not only sick, but amoung the sick who many feel deserve what they got. Over and over on this board, I have read stores of people who went undiagnosed--not for the lack of trying to find out what was wrong, but from simple tests not being done or symptoms being "brushed off"--. Over and over, I have read of people who went undiagnosed because their Doctors didnt seem to know that not all people with LC have cough as the presenting symptom. Even I assumed that since my cough went away, I didn't have LC. But I had other symptoms, symptoms you really have to search long and hard on the Internet to find that they are symptoms of LC. Sometimes I have even wondered if there isn't some "conspiracy" that makes it more cost effective to find as many of us as late in the disease process as possible. Maybe that sounds cynical, but it does kind of fit the cost effective nature of medicine these days. We need to start living long enough to fight not only the disease but the stigma and the 'system" as well. It takes so much to fight the disease and the other problems (financial, emotional, personal) , that many of us can't rally to fight outside of the personal level. I thank those of you who are doing that and have been given the skills and the relatively good health to do it. And many of you caregivers, who do it too--even while giving care, and then afterwards when your loved one has succombed. I think that some reasons AIDS and Breast Cancer victims have been so successful at organizing and garnering support, is because many of those afflicted are young and survive a longer period of time with their disease. Young people seem to organize around political causes easier than those of us who are older or who have more "responsibilities"--or maybe they have more energy. I don't know. I just know that I never wanted to be here, in this position, and now that I am , I hope to do what I can to make sure that as few people as possible walk the roads we on this board currently walk --lc patient or family member. While LC will exist forever, it doesn't have to exist the way it exists now. It CAN be found earlier, it CAN be cured much more often than it now is IF found earlie,r and new treatments CAN be found with adequate funding and public interest,too. The reasons some people get LC and some do not, CAN be studied --lots and lots CAN be done. But WE are the people who must see it gets done. That seems clear to me now. I had no idea until I put these "shoes" on a few weeks ago, what the road looked like, and my it's kind of muddy and yucky, but like so many of you have said, "all things are possible." But it will take lots of action. Many of you are doing things now, and what more can we do and should we be doing? Quote Link to comment Share on other sites More sharing options...
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