Elaine

Oh sweetie, I am so sorry to hear this news. Lots of love headed your way! Give your mom some extra hugs from all of us. love and fortitude elaine

Cheryl Hope things ease up a whole bunch! Keep kicking back, okay? All my love to you both. elaine

Thank you Don for letting us know how Lucie is. I am glad she is enjoying life and getting a much needed break. love and fortitude elaine

At first I had Frank figured for an ol coot, but he really is a sweetie! Thanks Frank, love you as always. elaine

This is for patients. It's not that I care who reads it or posts, but I don't want to upset anyone. I guess it's really for those of you with ED. I had to ask myself why in the heck did I get so upset once again. Besides the reason that might be obvious to some of you, I am sure there was more. I know Betty has brought this up sort of, but I don't know if we have ever really talked about it lately. It's about this constant need I feel to be strong for others. So one of my ears heard this when someone posted I don't want to hear from patients: I "heard": keep on being strong no matter what and don't dare talk about anything that might upset anyone. People already have enough problems, so don't add to it. That's what I heard, not necessarily what was "said." Theresa the nurse posted a quote about the fear others have of people who are sick because they can not or are not ready to face their own eventual demise. I am not ready to face mine either, but I just keep thinking I better just not say anything. I think part of it is I don't want to face anyone else's pain either. It's all mixed up--my need to be weak at times, my need to say some things, and my "need" to not face things, which means not say anything. I am careful never to wince, knowingly, and that is pretty hard to do some days, believe me. I am sure I am doing a horrible job of faking it since I walk like a snail. I hate being alone here, but on the other hand, I don't have to pretend if I don't want to. Likewise, when I am around my kids I am in much better spirits, so I do more and feel less badly. It's mostly just with my husband. I think we need to talk about some of this, but he is just beside himself with fear and helplessness and maybe I am too. So it feels like a big wal,l and I don't know a way through it. Where IS the door? It doesn't help that it may be 2 or more months before I move. It was pretty scary being here with no electric for 6 days and nights, no TV or heat-- did have a phone but who wanted to hear me whine. I don't do whine very well; hard for some of you to believe it. I got some pretty bad news in a most horrible way yesterday. Instead of a Dr telling me I need O2, I get a phone call from some O2 salesman. I guess I should have been able to figure it out myself looking at my PFTs, but stilll...... only one of my values is way low and I didn't know what it meant to begin with. I guess I am just not ready for a lot of things. I know O2 isn't the worst thing that can happen, but for me, it is a milestone that means a lot, symbolically. Is anything I am saying making a bit of sense? I also have read that people who are sick begin to close themselves off from their loved ones. I have done that some already, and I don't want to do it anymore. I really don't. I know my own mom did that when she was sick, and I was just a kid. It was awful. I also see where people lash out at their loved ones. I don't want to do that either. I would hate myself or hate for that to be memories floating around in my kids' heads. I cant tell you how many other fears I have, and I guess these few are enough for now. All I know is that I feel like I am walking around in a foreign land ,and someone keeps chainging the "rules" so I am sure I am going to mess up bad, so I am very careful. I guess I do my messing up here, instead. I guess counseling is an option or worse hospice. I don't mean to offend, but I just can't see doing hospice or counseling without my family around. elaine

I dont get jealous often, but this one ...... Nah, I am happy as heck about this and about lots of other things that seem to be heading in the right direction for you. It is your year, I think. I am so excited for you and hope you continue to work your buns off. Literally and figureatively. I got a lot of bun to work off, so that is mostly why I am jealous. But like I have told you before-- I loved to work. I didn't much care about the paycheck. I did things I would gladly do for free. I was lucky that way and so are you. elaine

Been thinking about you all day. I hope you have landed safely and are getting lots of mom's sweet hugs. elaine

I hate to break it to you, but I have this feeling that you are going to be hyper sensitive for maybe a long, long time. I think that is probably a good thing on one hand, you know? It's called self-preservation. The mind is a wonderful thing, and so is the imagination....but on the other hand, it can wreck havoc with everyday aches and pains. I just wish like heck you and no one in this whole universe had to deal with it. But like the others who posted before me have said--do it they do. My best to you. love and fortitude elaine

Rick, Could you keep deleting threads from the database continuously until it really IS 1969????? Figure out a way to do it for just those usernames who want it, okay? Put us in a little pixel pen and delete away until I am .......in 9th grade. That was the year I walked in on my civics teacher giving his lover a goodbye kiss. I had no clue what to do, and it was a REAL kiss. I kept his secret, but I don't think he thought I would. But I think by Jan 1969 that was all over. I could skip that experience and move on to the first real boyfriend who I now know better than to go out with. But I would probably do it anyway--unless there is a way to change the shape of the 1969 pixels.... But most of the pixels, I like. elaine

Justa I kinda doubt she shares the burger, but I bet if you asked REAL nice she might share the buger. I mean, how hard could THAT be to swallow??? Yech . Might make you glad though that you can't eat, though? Huh?

Ry This is the one of the best posts ever! Thank you. I haven't gotten My answer to work every day though. But I am working on it. I was a workaholic before this DX. It really hurt to not have that to pour my heart and soul into, and pour I did. I guess I was a postaholic for awhile, lol. It took me a long time to get my ability to concentrate back, and until then I couldn't do the writing I wanted. Heck, I Couldn't even watch a movie, really. I was without electicity for 6 freezing cold days and nights last week. For two of those days, I actually had partial power, but no heat or stove etc. So I watched like 8 movies and was really enjoying it and then a ton of sparks began flying on my wires and POOF no electic at all. Then when it finally came on Sunday night, my cable is out. Go figure. Then I lost power again. This afternoon I have both. Wonder how long it will last? Anyway, the best for me is being with my kids and doing normal things. It just hasn't felt all that normal since Dx. Kids are too far away, but knowing they have good lives is something I cherish. Not perfect lives, but very nice ones. elaine Dang, can I have the brickfireplace, pls? I miss mine. elaine

Don't let Lisa O and Hebbie here about your plans. You may have hair follicles of steel, but they have resolve of steel, lol. In your honor, I will head out to DQ for a bananna split and then I will head over to Backyard Burger (you guys have that place??) for one of the best dang burgers NOT made in MY backyard. Anyone who lives close to that chain, I urge you to indulge! In honor of Di, of course. Happy Birthday, I think you earned this one and the next 50, royally!!! elaine

Thanks for checking in! Wish the New Year's cocktail was something other than chemo, but I hope your dad was able to wash it down with a toast to better days ahead! All of you for that matter. And here's to cough free and restful nights, too. love you all and lots of fortitude. elaine

Miche, Pain is an unlikely early symptom of lc. Pain that is effected by heat or massage is definately not a likely early symptom. The pluera could not be massaged, if that makes sense. Sounds like muscle pain. An MRI of the shoulder area, as Don suggested might be something for your Dr to consider. Also I think that if you could find a Dr that you could trust, you might feel better about things. I hope you find an answer, but sometimes answers are not found and it is not an easy thing to deal with: the unknown. My best to you, elaine

WOW! That is great news! You really earned NED's residency, too! I don't know if the damage is permanent or not, but keep us posted. I am so glad to hear the relief in your "voice!" elaine

You mean, I wasted all my Frank and the Bear jokes couple months ago!!! Dang!! You really makin me work hard now! elaine

I found this: LACRIMA MORTIS: THE TEAR OF DEATH It must be a heart-wrenching experience to see a single tear roll down the cheek of a person at the moment of his or her death. I. Lichter, medical director of the Te Omanga Hospice, in New Zealand, wondered how often this phenomenon occurred and why. Working with the Hospice nursing staff, Lichter followed 100 patients nearing death. "The results showed 14 patients shed a final tear at the time of death, and a further 13 within the last 10 hours of life. "In 21 of the 27 cases, the dying person was unconscious at the time of the last tear. And in all but one case the tear was shed by patients whose death was expected rather than sudden." Lichter and colleagues wondered if the death-bed tears were emotional in origin or perhaps caused by a reflex action. Notes made by the nursing staff were inconclusive on this matter. Lichter thought of chemically analyzing some of the last tears, because emotional tears have a different chemical composition from those produced by irritation. Unfortunately, a single tear was insufficent for the analysis. (Morrison, Alastair; "The Mystery of the Death-Bed Tear," Wellington Dominion, August 11, 1993. Cr. P. Hassall) From Science Frontiers #94, JUL-AUG 1994. © 1994-2000 William R. Corliss

Thank you all for these astute posts. It's also so good to hear from you Melanie. I had been thinking of you and I am glad to see you post. Thank you Thereas for that Gilman quote. I see that so much on the faces of people. Supposedly we are the only "beings" who are aware that we will die. (Maybe not.) But even though we have that awareness, we really can't imagine not existing, really--as our point of reference is this world. I am reminded of a maze created with shrubery in New Harmony, Indiana. Once I had had a little too much to drink and decided to walk the maze. It was a moonless night. I was with several friends but for some reason, as we walked the maze, we all kept silent. We walked with our hands--and it was frightening to be "lost" even though we all knew that we certainly weren't "lost." Sheesh, if nothing else, the sun was surely going to rise. We had no point of reference. I am sure all of us have had an experience somewhat like this. I think of this experience now, very often. It explains the way I feel and the way others must feel confronted with my illness-even though we come at the "experience" from a totally different anlge--my illness and the illnesses of the "other" catch us walking (stumbling) in the dark, with our hands. elaine

Kim and Paddy I was away for the holidays and am trying to catch up. These were two beautiful posts. Thank you so much. Those of us who are ill so depend on hearing how those of you who have been left here garner the strength to find life's blessings in each day. You both painted such vivid pictures. I ache for you, having lost my parents, and having lived many years alone. But the one thing that you remind me of is that love never leaves. It may change form, but it is not dependent on anything but the love itself. elaine

Cheryl I never once thought that Jack's response was a personal response to Dr. Joe. I am saddened that anyone, least of all Dr. Joe, might have construed it in that way. I saw it as Jack talking about an issue much larger than a response to Dr. Joe. I hope that if you feel up to it that you will check out the link I put on a thread I started. Jack, too. Dr. Joe, as well. It really helped me to see some things more clearly. I think managed care has also caused a great burden on Drs. Something has to be done and I don't know exactly what. I wish I did. If Dr. Joe left the board for good, (and I pray he has not) I don't think it was because of ONE thing. I am sure many, many other factors played a part. On a personal note, I hope you know that we are all standing beside you-- fighting for you, with you and because of you. No one knows what it is like to be in your shoes, or in the shoes of any of us with this dreaded disease--and different for each of us, too. Likewise, as we don't know what it is like to be in the shoes of primary caregivers. We are fighting side by side--and if one of us feels weak, then another of us will hold another up. In this together, always. elaine

http://www.yourdoctorinthefamily.com/gr ... index.html I just spent the last three or more hours reading the link that I will provide. I am not advocating this Dr.'s solution--only because I have not had enough time to really think it through as one should do. However, based on the discussion on this board that I came home to yesterday, and my sadness on learning that Dr. Joe has left the board, and that Cheryl and Jack are feeling hurt, I think that anyone who wants to know the ways things "are" in the health care/insurance business based on the way things "were"--from decades ago to recently, should take the time to read this intellegent and accessible explanation. Yes, it IS long. Too long for me to summarize the way one ought to do. It speaks of the "covert rationing" of health care. It speaks to the ways in which the relationship between Drs and patients has been torn assunder when the managenment of health care was turned over to business people instead of Drs. This has caused a great deal of mistrust. Anyone spending time on this board can see it clearly--rationing does occur--and this explains why some get more care than others. It explains HMOs and why they are now waning--but what is replacing them hardly is any better than what we had/have. It substantializes what many of us have often suspected--and more--it tells an even deeper tale of how managed care really works and who it works for--It does not work for patients and it undermines the oath that Drs. take--leaving them between a rock and a hard place-- Drs are bought and they are bought subconsiously. Managed care is what encourages PCPs to view chronically ill patients as "difficult" (unless of course the PCP already has a long term relationship with a patient and his or her family. To fully "get" the article would take more than the 3 hours I spent on it. But I will try to go back to it. Yes, the author, a cardiologist, has an opinon. Those of you who might be put off by his opinon, I urge you to read it anyway--if for nothing else than for the "facts" he presents in support of his opinion. His solution is just ONE solution. There are probably many others. But exposing the reality is one step to exploring solutions. I also hope and pray that Drs as well as caregivers and patients will read this. So like a bad penny, I am back. But I hope that at least a few of you will have the time to read this. I wanted to point out particularly eye opening sections, but I suppose anyone who just wants to skim around will find them. As a whole, though, it makes the most sense. http://www.yourdoctorinthefamily.com/gr ... index.html love and fortitude elaine

Cathy. I have been away for almost two weeks and just saw this post. I am so sorry for the loss of your dear husband and a father. May you find comfort in memories, knowing he lives on in the hearts of those who love him. love and fortitude elaine

I hope your parents are still there to help you both out. Also hope you are feeling better today--cos Karen needs someone to pamper her awhile. HO HO HO! Just love three year olds! elaine

Thank you Fay. It is also an addictive substance. It is my understanding that it is not the nicotine that really causes lc, but the other chemicals used to process the tobacco and to turn it into cigerettes, that and the fact that a person is inhaling a burning substance--like many other heated substances are not good to inhale. Nicotine is a poison when it is ingested or absorbed through the skin in a huge dose at one time. Small doses do not "poison" as it is a substance with a very short "life."--ironically. I am not arguing here, and I am not defending smokers. The science of cigerettes is complex. Nicotine is produced naturally in several forms and is in all growing plants. The tobacco plant is unique in the way it "stores" nicotine. It is a fact that cigerette companies consiously added more and more nicotine to their product in order to keep sales high. But a cigerette with very little nicotine would be just as deadly to smoke or to inhale in great quantities. I am not a chemical scientist and thus don't really understand the whole molecular stuff, but I do not doubt that being around a person who has just smoked a cigerette can cause what Fay describes. Why else would she report this? I still agree with everything else I wrote. It is cigerettes and addiction that is the enemy--not the smoker. There are many people on this board, patients and caregivers, who still smoke. I assume this board supports them, but most of them are "closeted", just as most lc patients and families are. If you want them to come to rallies and give dollars, they first need to come out of the closet. Beating them over the head with their behavior is not going to help, nor is talking about how easy it is to quit, or how harmful it is, or how much it hurts others. I truly don't know what will "help"-- but I do know that most people respond to positive and supporting environments and people. I guess I continue to misread the mission statement posted on this board--that talks about many other things about lc and the stigma and the lack of compassion and the lack of research funds etc. etc. If we as people effected by lc can't come to peace about this subject that DOES cause stigma and DOES cause lc patients to be labeled and in many ways MIS-treated, then how can the stigma be erased? The only way to come to peace about it is to discuss it. No one has to read it that doesn't want to. I don't know why people stating their opinions is considered arguing. I don't know why some people take it personal if someone disagrees or perhaps misreads a post. I did not attack Bo, I talked about the attitude that he and others share. Snowflake and I disagree about many things. On this thread, we disagree with who should pay to help smokers kick the habit. I, in no way, take offense at our disagreement. I doubt she does either. Many people share BO's position about smokers and addiction. No biggie. I just disagree. For most people it is more than just the nicotine that is addictive-- Perhaps I misunderstood what Heather meant when she said that she will not be in a room with a smoker if she can help it--and maybe she meant to write a person who is actively smoking a cig--or who has recently done so. Perhaps, I am guilty of intellecualizing as I read in the link that Donna posted. There are many levels of denial, I agree. I don't doubt that I am not unlike every other human being. So, again I will sign off, pretentiously. There's a whole thread or two on difficult patients--and I would say that much of why we are labeled is because of the stigma--that we caused it and now we want someone to help us. elaine

I PMed you. But I sure wish my mother in law would do steaks for holiday dinner! Yum!!!!