Friday, February 26, 2010

Norma Rae's real story ends with meningioma

Dear Good People
The real Norma Rae, Crystal Lee Sutton's life ends with more insurance and treatment questions than answers, The fine print in the health care legal documents are too complex for most of us to figure out and it depends on how smart you are, who you are, or how much money you have, or your family has connections to good doctors or, what medical attorneys know to help people navigate the health care system to figure out how to get an exception to almost any exemption. The two party system of government is not protecting ordinary working people, it is protecting the wealthy investors who hide behind corporate shields so they are not personally responsible for the damage and death they cause and/or allow to happen. Senators are not working for all Americans or unemployed people who do not have a union job or employee benefits. I have heard even union workers might not get enough hours and coverage paid if they do not follow the party line.

I hope responsible investigative reporters and "truthseekers like me" will continue look for more details on her treatment plan and her insurance company.

What kind of health insurance policy did she have? I read online somewhere that it had an annual cap of $100.000 per year and she was 67 years old when she was first diagnosed. I wonder why not, or if she was actually on MEDICARE? We need more facts instead of the typical media hype for dummies that we get even from senators on both sides, because they are not our our side.
There is no approved FDA chemotherapy for malignant meningioma because the mega big corporations of the pharma industry and the NCI Adult Brain Tumor Consortium have decided not spent our tax money on research studying this usually slow growing brain tumor that strikes women teice as often as men, because it is generally considered rare and benign. But our meningiomas are twice as common as the deadly type that killed Ted Kennedy and they hasppen twice as often to women. And surviving two brain surgeries exactly a year apart is a remarkable feat for anyone, especially someone her age. I would have expected that once her doctor found out it was malignant after her first surgery she would have been treated with brain radiation therapy and chemo right away, why wait a year and why another surgery at her age? Why didn't she get radiation therapy and some chemo a year earlier, like other malignant brain tunor patients? Did she chose not to have brain radiation? Was it recommended for her case? I would like to know waht actually happened here before Democrats try to use her as a poster child for Obamacare. According to her age, she was medicare eligible for the past three years. Secondly, We do not have enough information. What was the chemo drug she was offered? Was it experimental? or not normally used or considered effective for this type of tumor? Or was it a simple coding error?

Do we know what drug she would have been given if she was on MEDICARE? Could she even get an investigational drug like I am on, if she was on MEDICARE or if she had a private policy, I doubt the drug I take was even mentioned to her by her doctors. I can't get it from my private insurance UNITED HEALTH CARE and will our government pay for it once I do get on MEDICARE? I got it for free from the NCI in the 1990's. Or will I have to stop taking it, if we can no longer afford an extra $6,000 a year for my care? And I had to wait a whole year for the paperwork while my vision got worse before I could get for myself, not just two months. IS it big mega corporation profit? bribes and/or bonuses? I wish I knew all the answers, but I want the federal government plan that retired employees like Dick Cheney has, he got such good care he has survived 5 heart attacks intact, although I thought he had some brain cells missing even when he shot that guy while out hunting, many people do not even survive one.

Yes, this is very personal for me, that's why I am such a fanatic about health care issues and education and information. Reading is fundamental to survive in the world today. I guess they will probably try to deny me approval again, but if I only have to wait two months to get it that will be better than the situation while I was on private insurance. I certainly do not have all the answers, but I can keep on asking probing questions because this is so vital to my own health and my future, because inquiring minds want to know more. I believe there is no such thing as a dumb question as long as we are polite, and some times we might need to be persistent. It is incorrect answers or silence without any answer that hurts us the most. GBYAY Anne McGinnis Breen

Journaling After Brain Injury

Journal After Brain Injury
Thinking about yourself and/or your loved one after a brain injury can get emotional, writing down your thoughts can help you to cope. Here Barbara Stahura suggests some topics to get you started on coping with your new feelings.

Wednesday, February 24, 2010

How to Stop Worrying: Self-Help for Anxiety Relief

How to Stop Worrying: Self-Help for Anxiety Relief

CT and Pet scans have risks

Granted this 2009 article below is new and not officially approved yet, but based on the fact that the EPA office staff wrote back to me that its Federal Guidance and Protection Diagnostic Radiology Report (FGR 9) is thirty years old. Or at least twenty years out of date according to other scientific documentation in BEIR VII since 1990 and needs updating and revision because it does not take all the CT/PET scans fully into account. And a EPA working group with the Interagency Steering Committe on Radiation Standards (ISCORS) plans to discuss the need for reference levels and dose optimization, new dose metrics, guidelines and standards to reduce unnessessary radiation exposure due to increasing medical use. I wonder if any of it has been implemented yet?

Because this article below is so scary, please don't share it with anyone who needs an immediate diagnostic CT or PET scan to save their life unless you are sure doctors will approve a more expensive MRI scan instead. Some doctors think the MRIs show too much "tiny" detail of possible lumps that may never need to be treated in the person's lifetime. Please try to remember the balance and duality of risk vers reward. Its like flipping a coin, heads you win, tails you lose. The luck of the draw. For example, we all love to watch the Olympic winter sports, yet at the same time thousands more young people are taking extreme risks of possible physical or emotional injury while practicing their sport and hoping someday to compete to win a gold metal and the highest honors. Only a very few ever acomplish their goals without significant physical or psychological wounds as they actually risk their life for extreme sport. Everything in life has an up side and a down side, we all need to try to go with the flow up to some point beyond which we may falter or sacrifice too much of oursleves to recover our balance.