Elaine
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Posts posted by Elaine
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Geoff
May you find comfort knowing that your mother lives in the memories of her dear family and friends.
You are a wonderful son and advocate for your mother. You are a testament to her goodness. Carry good thoughts of her as you travel through life. There ARE better days ahead. Sometimes it's hard to see that through the fog of grief.
love and fortitude
elaine
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Dianne
That's the way insurance works anyway. If a company's claims go up, the company's premiums go up the next year to cover the costs of what it cost the insuracne company to cover those expenses--and then a projection is added on for the following year.
I don't even know why it's called insurane to begin with. Most companies don't self insure, mainly because of all the paper work involved with claims and dealing with the verious providers. Thus, they pay an insurance company, in part, to handle the paperwork, really. But the cost of claims and clerical/admin is basically passed on to the companies who contract with the insurance company, from what I can see.
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Bill,
My state has a web site where you can punch in your numbers and see if you qualify for benefits. Assuming my husband gets the maximum amount from umemployment, we would not qualify for any other benefits--such as health care. You are right. It's not hard to qualify for the maximum, it didn't seem.
But we have no choice really. He will file and I guess part of our spend down will be used to make Cobra payments. If he is still unemployed after 26 weeks, we should be broke by then, lol--having spent it all down on just getting by. Then we won't have money to pay for the Cobra, and we should qualify for a much better health care plan--which is the state medicaid system. Crazy, huh?
After which time, we will not be able to get by--so who knows!
elaine.
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Oh TANN,
I am so sorry. I lost a cat a little over a month ago to feline leukemia. I think we should have not put him down so soon, sometimes. I still feel awful because maybe I was so wrapped up in my own health issues that I didn't see that he was ill for awhile.
He was a lazy cat and I thought he was just being lazy--sleeping so much. His little face haunts me. He really loved my husband-- I was just someone whose chair he could steal, lol. And of course I was good for filling the cat dish. I am glad he and my husband found each other, though. And I am sorry they lost each other, for now, too.
elaine
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Cindy
I have been waiting anxiously for news about your teaching job! I just knew you would find it was a lot of work, LOL. People always said how lucky I was to have such an easy job, LOL.
I also found what Don said to be true about night classes.
I am glad you are enjoying it.
Sooooo good to hear from you.
love and fortutude
elaine
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Cindi
Wow! I am so happy for you. You have given us all so much hope and inspiration!
I am glad you were able to see behind the scenes and that what you saw gave you hope!
May the anniversaries continue! We all go through so much together, it seems, though are paths are all unique.
For me, on here, when someone is successful or has good results, I feel like we all do.
elaine
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Heather--you rock! I am so glad those of you who were able to meet face to face did so! I can't wait to see the pictures.
This is amazing!
elaine
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I really hate to bring the politics back up, but Fay made me do it, lol.
I did not hear President Bush say he was going to work in a bi-partisan fashion. He direct words were that he was going to work with those people who already share his goal. hmmmmm. That sounds like gloating to me. He says he has a mandate?
I'm with Fay on this one, too. And to boot, I am scared for the furture of many, many things.
The other thing is this: I don't believe it would take an increase like Dr Joe or Dianne are saying, but if it did, I would pay it.
John Kerry's plan was not socialized medicine at all. Go to JohnKerry.com and read it. It's a mute point, now, so no one will. But it was not socialized medicine no matter how some media and some politicians liked to characterize it.
It created insurance pools that people and small and large businesses could buy into at reduced costs.
It's quite fine with me if the working poor all can't have BMWs and 4,000 square foot houses, but for the working poor not to have health insurance is a moral outrage. If people in the country want to continue to wear the badges of their success, so be it, but not at the expense of the health of others.
I already wrote today somewhere, about the myth that all people without insurance will be taken care of by local systems. NOt so for the working poor and working lower middle and middle class--only the very, very poor.
As for a federally controlled health care system--I am not for that either. Spent too much time covering just one of the federally operated health care systems--IHS--. Being a patient there was kind of scary, too.
elaine
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Dr Joe
Bad outcomes do happen and that to me is not malpractice unless those bad outcomes are because of neglect, not knowing something or not doing something that ought to be done, or doing something that ought not be done.
Can Drs know or do everything? No. So they clearly have to know what they don't know and can and can not do and then either find out or send the patient on.
If HMOs get in the way of that, then Doctors need to tackle the HMOs--, in my opinion. If Drs can't tackle the HMOs on their own, then Drs could rally others to help.
The above is what I mean by malpractice.
I spent a year as a journalist. I took on extremely tough issues in an extremely tough environment. I know some of what it means to be worried about being sued and to be worried about being harmed because of what I had written. I had two choices--write fluff or take on the heavy stuff and suffer the consequences.
I chose the heavy stuff--and I chose to make sure I was careful. We were relatively small and I had no fact checkers or string reporters. I had no formal training, but I quickly found people I could go to for advice in sticky situations. I owed it to my employer, to the people I was writing about and to the readers. That is what I mean about responsibility.
Early on, I made a serious error. I ate crow in the next edition. I am glad my editor made me do that. Was my error intentional? No. It was part mistake and part an error of judgement. The paper could have been sued, but luckily the person and events I had unintentionally mischaracterized was decent with me because I owned up. Other times, I did not back down when there was no reason to back down. I knew what the facts were and I was not intimadated by outside pressure. Even the editor couldn't do much to stop me, lol.
You are right, no Dr ordered cleaning fluid put in the vaporizer. In this case, I do not know who really is responsible. But if part of the Drs duties are to supervise a case, then they are responsible for the actions of those they are supervising--. I would think however, that it was the hospital's responsibility, and in fact, from what I remember about the case, it was the hospital that was sued and not a Dr. directly, though there may well have been a Dr who was party to the suit.
Had the paper been sued, it would not have been me personally who would have paid. My editor/publisher/owner would have born the brunt because inevitably he took on that responsibility--to check my work etc. I had no pockets, deep or otherwise. Is that fair? I think it is. So if I was some kind of unruly reporter who made up stuff and ran wild with my words and the editor didn't stop me, I am morally at fault and my editor is responsible. He took on that responsibility when he hired me--to ascertain if I was quailified, responsible etc., as well.
I think review boards would go a long way to stop some lawsuits that are either frivolous or are truly mistakes that could not be avoided given the circumstances of each case.
But in the end, I do think that some mistakes and errors of judgement are indeed malpractice; thus the Dr. or other entity should be held accountable.
I feel like I have been characterizing myself as a Dr, hater. That is not the case. I have had some wonderful Drs in the past. Just not my luck lately.
elaine
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Dr Joe
Oddly enough, I just got an email from the Dr. in Mexico who also did not know about parathesias being connected to HPOA. I am going to send him the two small references I have found to it.
He is really interested in that because he wrote a paper on the overlap between POEMS syndrome and HPOA. One of the main features of POEMS syndrome is nueropathy--present in nearly 100 per cent of cases. He even asked me if I was sure I have HPOA and not POEMS.
To be frank, I am not sure of anything, anymore.
As for Zometa, I think that is what I need to do also. This higher dose of Nuerontin did seem to work, and I have no other pain except a minor chest thing going on and of course the arthralgias--so that may be why I was not offered anything else.
I am still wishing for debulking, but my recent xray (can't seem to get a darn cat scan) showed no progression of the lung mass. Almost unchanged from I think the April xray, which also showed little progression from the late Jan one. That seems to have puzzled my Dr. I am significantly more SOB, however. Something is amiss.
I was first put on 200 mg of celebrex which I tolerated. I recently started taking 400 mg and I have had lots of nausea and regurgitation from it. I wasnt certain the celebrex was causing it, but when I went off Celebrex, the nausea lessoned, and the regurgitation went away. There is no way I can see that I can tolerate 800 mg like I was trying to get to.
Thanks for replying.
elaine
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My CEA wasn't substantially elevated at DX and at 3 and 6 months past dx it remained within a point of the original number. . I think I was within normal for a smoker. But I am wondering if it still shouldnt be used to help ascertain if there may be mets--as a first step in my re-staging.
I notice my new Dr. did not order a CEA among the bloodwork when the whole point of my getting new Drs was to be re-staged and to look at current options in re to treatment.
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Fay,
What is the cause of your burning pain? Just curious, since I am trying to figure out what is for sure causing mine.
I am pretty certain that my HPOA is causing mine--but interestingly enough, I have had to be the one who has told both of my PCPs, the nuerologist and the ex-onc that this is the case--even going so far as to print off articles from medical journals for them since they only think it causes arthritis like symptoms.
I don't think the nuerologist is convinced that I am right as I see he told her to order a B12 test, glucose test and heavy metal poisoning test--apparently to find out what is causing this nueropathy, when it is the HPOA that is causing it AND the buring pain.
I got so angry about this that I called the case manager and told her I don't understand how an hour researching on the Internet could give me the knowldege of what tests I need and can't seem to get from these Drs.
Maybe that sounds arrogant, but it's just mind boggling that I have a condition that between 8 and 12 per cent of lc patients have, and NO ONE seems to know diddly about it--or care enough to find out.
The first Onc put me on 100 mg Nuerontin twice a day for the pain--when that obviously would not be enough. When I told him it wasn't working, he didn't even bother to up the dose--for what reason, I don't know. Since I had that pain intermittantly anyway--then--I just didn't bother. Now the HPOA is effecting more and more bones, so the pain taking over more and more body areas including my skull and face bones-- I guess that is what is happening. But I do know there is no way I am going to get an answer from any Dr. that I have.
I emailed a Dr in Mexico who has written widely on it. Earlier I emailed him and he responded-- mailing me articles he wrote that I had no access to. So I am hoping he will respond this time.
There are MANY UNKOWNS about this condition, to be sure, but for them NOT to know the known things seems awful to me and indicative of the concern lc patients get from Drs.
Anyway, maybe I am wrong and this burning pain is not HPOA related if you are also having it Fay. Or maybe you have HPOA and your Drs havent figured that out.
Thank the lord for this board where we can find out what others are going through, which can help us find the answers that we need.
elaine
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She gave me 6oo mg to be taken ONCE a day, before bedtime. . I took it last night, and it did work but this morning I can already feel it wearing off. So I am getting a little bit anxious about it.
I am thinking about taking another one becuase I so don't want to have to go through another minute of that pain.
Jane, or anyone, did you start out taking 1200 mg a day or did you have to slowly increase to that amount? I am wondering if it is dangerous just to increase the dose myself. Then I am also afraid that she won't give me a script for thirty days and then I will be without relief for 15 days.
This is crazy!
I do think I should just go to the emergency room. I told my hus band last night that that is the only way I am going to get these tests done in a timely matter. When I saw the list of bloodwork she ordered I was appalled at the things she DIDN"T order and at some she DID order.
He bought a new gun and since I felt better this morning, I told him to go ahead and take his trip to hopefully get his mind off of all that has b een happening. He had to go turn his things in at work this morning and that was emotional for him--.
I am going to try to ride this thing out until monday. But I wonder if I can take another pill now and not be putting myself in danger.
So if anyone knows, pls let me know.
elaine
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Well, they gave me a MAMA sized dose of nuerontin, which seems to have worked! But I can already tell its effects are fading, 10 hours before the next dose is due, but it such a relief, to have some of the despair lifted this morning!
I am going to try adding something to tackle the arthralgia and hope to be able to walk better today.
The down side is that with that horrible pain gone, I am noticing some other troubling chest pain--it was there for the past couple days, but the other pain was just so overwhelming that I could have cared less about any other thing in the world except stopping it.
Dr. Joe, I am still curious to know what you think and know about this condition I have.
My love to all of you who have expressed your concern. I am trying to figure out why I am having such trouble communicating with this new Dr. I have. My old PCP office at least was better at communication and making sure I had meds--until the end when they insisted I be seen (which they had every right to insist, I think--no problem there--I just didn't want to be see him and be subjected to more guilt trips.)
ADDED: Ok the pain IS coming back, and I don't know if I should just take another pill or not. She only has me taking one a day--at night. Is it dangerous to just up my dose this qucikly?
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Wine--Yech. Why couldn't it be something like rum?
elaine
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first date
in GRIEF
Curtis.
You are a beautiful, beautiful person. I pray the Lord sends you another angel.
elaine
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Great point Cindy! I do think that when there are xrays to compare with each other, fewer things are missed. I hope so anyway!
elaine
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Welcome! And thank-you and your daughter for all you are doing to raise awareness of this horrid disease.
I pray your treatments work and that many, many I don't have cancer days are in front of you!
love and fortitude
elaine
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I think it is a sad day in America, when people feel they have to remind each other that they ARE entitled to their opinions. We are ALL entitled to our thoughtful, thought-out opinions.
Fay
All health care matters/insurance matters come under federal jurisciction if you think of it. To me, that some people have access to excellent care and others do not, or even what is defined as good healthcare is a result of federal policy.
There seems to be a myth that if a person does not have insurance that local and state monies take care of that person. Not so.
The working poor without insurance are not taken care of--and when they are, their symptoms are often worse, which reduces their outcomes and ends up costing an already overburdened health system more.
To qualify for benefits in my state, for example, your income in a two person family has to be about 1,000 a month or less. Families with children fare better, as they should. Unemployment benefits and SSI and SSD count as income. Not only does your income have to be low, but you can have basically no assets.
The census bureau says that in 2002, 45 million Americans went without health insurane--the largest ever. ONly 60 per cent of people with jobs had health care as a benefit--the lowest per cent ever.
What does Pres Bush see as this nation's biggest health care crisis? Making sure that there is a cap on medical malpractice and making it even harder for people who have been injured in the health care system to even seek damages.
I think it is also a myth that when well-off people like Doctors are able to keep more of their money that they then somehow become more willing to give money away! Or that health care costs will go down. When have you seen prices go down on anything, really, let alone health care.
Trickle down economics didn't work in the 1980s and it won't work now. Human nature, unfortunately is selfish
I, too, am against frivolous law suits, but there are better ways to stop those from happening--such as having review boards to screen law suits.
One of my dearest friends took his child to the hospital because she was having trouble breathing--either asthma or a respiratory infection. The child was put into a "steam tent"--instead of water, cleaning fluid was used. When my friend, Eric and his wife, mentioned the weird smell, they were treated like dumb people for even mentioning this.
As a result, the child is severely brain damaged from inhaling hexane and other chemicals. This is medical malpractice. Eric has little money, a job and no health insurance--anything that would stop him from seeking or acquiring adequate damages on behalf of Maya, is not this nation's biggest health care concern, in my opinion. There is nothing that can, however, bring back the promise of this child's life.
There are people on this board without health insurance--they need to tell their stories.
I lived for a year before DX without health insurance, but I had a job. I have a life threatening arrythimia, and once I had to call an ambulance--much time was spent, while they were trying to stabalize me, trying to figure out where they could take me for care that wasn't over 50 miles away. ( I lived in South Dakota). I was lucky in a way, because I was well-known in those parts and Indian Health Care Personnel said to bring me there even though I am non-Indian and had no right to get care at that facility. However, knowing what I know about Indian Health Care Services, made me a little leery if I would actually live. That's a whole other story, lol.
So I am dismayed that Bush won again because I don't agree that the interests of the wealthy should be the primary concern of the government. If Doctors fear malpractice, then they ought not malpractice.
If I fear being sued for my misconduct or my errors of judgement, then I need to do my best to be responsible.
The followng link highlights the problem and consequences of millions of people without health insurance much better than I can ever hope to do:
http://www.cbpp.org/8-26-04health.htm
I agree with Fay, that places like this board, are places these concerns need to be raised. Anywhere is a place where these concerns need to be raised.
We don't have to agree. But unless we take on these diffucult issues, I don't think a solution can be had. "Support" is an all encompassing word.
elaine
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TANN
I do hope the replies have helped you know that in time you will find more strength. Being discouraged is also debilitating--sheesh do I know!
You are like the hero of my days, TANN.
love and fortitude
elaine
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Kimmek
As one who has been in unbearable pain for some time--and relentless pain since Sunday, I say, don't worry about the meds--they can only help-- Pain causes life to look pretty bleak, bad pain, does.
Your mom deserves to enjoy NED. She is a strong woman with a strong daughter. You are a testament to her goodness.
It sounds to me like she is not someone who would take the meds if she didnt need them..
Hoping the weekend brings only slight glitches and nothing that you feel overwhelmed ab out!
love and fortitude
elaine
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Rich
I wont mention Daschle or Thune, I promise, LOL--or which one is my friend.
I am sorry you had a bad reaction. I hate to read about them because lately if something bad CAN happen to me, it seems to....
Like Thune.....LOL.
elaine
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I just want to make sure more people see this. Based on the trouble I have had with the medical profession, I felt renewed to find this gem today. I hope it is a gift many of you will savor--proof that humanity is still alive and well in places we sometimes don't always find it!
From the Napa Valley Register, a reader writes an open letter to her father's onc. I am in tears as I post this.
The doctor who laughed at cancer
Wednesday, November 3, 2004
By SHARON DUNN
Dear Dr. Greg Smith,
Why do you fight for the terminally ill in what may seem like such a futile battle? Because you can and because it makes a significant difference to the families you fight for. Just in case you are ever questioning why you do what you do, I would like to remind you that what you do has a profound impact on our lives.
When I first heard of dad's death sentence of "Oat cell carcinoma," I collapsed in defeat, reminded of how this cancer rapidly ravaged a friend of mine years ago. I felt hopeless, but not for long. You walk in a room with a spirit unlike any physician I have ever encountered and I've worked in the medical field for 25 years. You are different, a mix of General Patton, Robin Williams and Gandhi.
Most physicians seem to focus on the physical aspect of the patient -- the disease and the prognosis. Maybe instead of telling patients they are terminally ill, doctors should just tell them that their ability to help them has terminated. I've seen doctors tell patients how long they have to live and when that time comes, the patient dies right on schedule. That's how much power there is in belief, which is the key to healing and is unlocked by the physician. And healing doesn't necessarily come with a cure. Healing has it's own unique, individual expression. You've never told us how long my father has to live.
It seemed like you laughed at the giant cancer like it was Goliath and you were Samson, and your humor is contagious. I felt like you were more concerned about my father's well being than you were about Goliath. Do you realize that meant more to me than Goliath too? You came armed with a plan of attack and I was immediately inspired to fight the battle along with you. I didn't care that we can't cure this kind of lung cancer. All I cared about was the win that I saw through you. I had no idea what we would win, but now I do.
This year has been one of the best years of my life spent with my father. Suffice to say it was never easy for he and I to get along. To be honest, the whole story has been erased. Please believe me when I say that this is my miracle. This is what you gave me, Dr. Smith. You gave me enough time with my father to trade in all of my childhood memories for new and better ones. I heard him tell me everything a daughter wants to hear. I got the apology I never expected and the acknowledgment I've always wanted. You gave us that, Dr. Smith.
Do you ever wonder why you are an oncologist? Please don't. The truth is, you make people feel better. That's what the physician is charged with. In its simplicity is the profound meaning of your purposeful vocation. By making people feel better you work miracles. You give the gift of time, a new meaning to Life and the opportunity for people to heal whatever it is that needs healing. I will never forget you and all that you have done for this family. This battle has been won. Please don't ever forget us if you are ever in doubt.
(Dunn lives in Napa.)
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Cancer Discrimination!
in GENERAL
Posted
Cheryl
First, I am so sorry to hear what has happened. I don't know if you have been able to read the boards, but a similar thing happened to my husband last week, just three weeks after he told his employer I had lc.
It scares me to think that an organization such as yours-- that has as its mission to care for others-- would see fit to be so cruel.
I wish I knew the law better. I recently posted a great article about cancer discrimination.
When you talk to your attorney, ask him or her about what he thinks about going to the media with your story.
Ry also asks a VERY good question--.
My heart goes out to you. I know how hurt you must feel.
love and fortitude
elaine