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McCamy Taylor Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 09:39 PM
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Sick and Poor
I. Opiate of the Masses

"So, wherever the doctrine of predestination was held, the question could not be suppressed whether there were any infallible criteria by which membership in the electi could be known.
Max Weber The Protestant Ethic and the Spirit of Capitalism

Our Puritan ancestors believed that wealth and good health are the signs of Gods blessing. Society is not to blame for the sick and poor. The sick and poor are to blame for their own misfortune. Some essential defect in their character keeps them from Gods grace, and so their life on earth is a misery and their life in Hell will be much the same. When illness and poverty are treated as divine justice, little effort is made to correct these problems, since who wants to go against the will of the Almighty? Instead, the sick and poor are held up as a lesson---work hard or you will end up in the garbage heap with these folks.

Our ancestor were not 100% Calvinist Protestants. Plenty of Catholics came to this shore, too. However, the Catholic notion that God creates the poor so that the rest of us can show off our virtue by taking care of them is not much of an improvement. While lepers may be told God loves you!, that provides little solace for the day to day misery they suffer here on earth.

Spiritual opium can not take the place of the real thing----opiate pain relievers---when you are in pain.

II. Science is Money

Poverty and illness go hand in hand. All the studies prove that. In industrialized nations, in developing countries, in the most poverty stricken areas of the Third World, you are more likely to be healthy if you are also wealthy.

Since association is not causality, we can not say Poverty leads to illness or Illness leads to poverty. However, if you read through the literature of poverty and health, you will find an emphasis on the detrimental effects of poverty on the health. Researchers keep trying to prove that if you are poor, your health will suffer. This makes a certain amount of sense. Poor folks live in homes near refineries and other polluting industry, which increase the risk of asthma, heart disease and certain cancers. They lack access to basic preventive health care. If they are lucky enough to get health insurance, it is often the type that they can not afford to use---high deductible and co-payments and many necessary treatments excluded. They lack internet access, which would allow them to learn about disease treatment and prevention. And certain types of disorders----psychiatric, substance abuse, family violence---have been clearly linked to income inequality if not to absolute poverty. Being poor and shit upon in a wealthy society causes low self esteem and hopelessness, which leads to more stress which leads to depression and alcohol abuse in a never ending cycle of despair.

What about the reverse scenerio? Disease as a cause of poverty? Scientific researchers are supposed to be unbiased. They are judged on how objective their studies are. Science is held up as the great leveler, which sweeps aside prejudice and looks for the facts---just the facts---even if they run counter to common notions.

In fact, science is just another commodity under capitalism. It is used to increase profits and cut the bottom line. If factory owners need to keep an underpaid work force----like Blacks---uneducated and disenfranchised so that their businesses will prosper, scientists will come up with theories to explain why African-Americans are genetically inferior. If Monsanto wants to keep farmers from harvesting seeds for their next crop, they will find a scientist somewhere who is willing to design terminator seed. And every year, thousands of new engineering graduates go to work for the War Industry (aka Defense), designing weapons that will be used to kill civilians. The atomic bombs that leveled Hiroshima and Nagasaki were designed by scientists. So were DIME bombs.

In order to fund a research study, you have to appeal to someone with money. And money likes money. So, if you want to show that Plavix is better than aspirin at preventing heart attack and stroke, you will find donors lining up at your door. Good luck getting funding for a study that shows that red yeast extract is as good as patented Lipitor. If you want to study the health effects of the pollution spewing from the local big employers smoke stacks, you might as well give up.

Back to poverty and illness. What difference does it make which comes first? Consider public policy. If your dogma is poverty breeds ill health, what does that mean? Since the United States is still a puritan nation, you will find few people in favor of handing out money to the poor. They will tell you that you can not solve the problem by throwing money at it. They will insist that poverty is a lifestyle choice. Poor people do not take care of themselves, because they are lazy, self indulgent. If they would just get off their butts and exercise and diet, they would be perfectly healthy. This last is especially popular among health care providers.

On the other hand, if you point to illness as a cause of poverty, folks feel uncomfortable with the status quo. Disease---especially inherited disease like diabetes, heart disease, asthma, arthritis--- is not a lifestyle choice. It is bad luck. Our notions of fairness require that we do something to help a neighbor who is suffering a misfortune beyond his control. We start talking about universal access to health care and improving air and water quality----

And then we run up against a great big brick wall. For capitalism demands a permanent poor, undereducated work force in order to keep costs down. And so, rich folks, like the ones at Koch industries

Will spend a lot of money to persuade us that we do not really want good health---for our neighbors. And the divided and conquered work force, which has been convinced that the economic suffering of other working class groups is good for their own group, will nod like a bunch of bobble heads and repeat "We do not want good health---for our (insert racial or ethnic slur of your choice) neighbors." Because they do not understand that when wages are suppressed for Blacks, for women, for immigrants, everyone's wages are lower.

Yes, I know that this is Marxist talk, of a kind that is not considered politically correct in our new, improved, corporate friendly Democratic Party. To anyone who is offended---too bad. The working class in this country is under attack. Education leads to better salaries---and so our system of public education is being dismantled. Middle class wealth and financial security is in the family home----and therefore, our homes are being taken from us. Public coffers could be used for social programs---and so, all our money has been given to the War Industry and to Banksters. The recession was engineered so that Morgan-Chase and Exxon could prosper.

The attack on the public health is more of the same. Because the corporate CEOs know (though they will not admit) that illness leads to poverty. And poverty is good for business.

III. I am Sick and Therefore I am Poor

Rep. Jim Moran wrote about the economic effects of chronic illness last year. Rheumatoid arthritis is a devastating disease which causes crippling and death if not treated. Even with health insurance, the costs of treatment can be high.

But keeping Elizabeth insured has also come at a price. Her family pays $2,000 a month for just one of her medications; add to that the high deductibles and co-pays for blood tests and procedures, and the price tag is overwhelming. Elizabeths illness is threatening to drive her parents into bankruptcy.

How many of you have $2000 dollars lying around each month in case one of your kids develops RA? What would happen to your family budget?

Now, consider the fact that autoimmune diseases, like RA, run in families. If you have a relative with RA, you are also likely to have relatives with Lupus or Graves Disease or other potentially crippling, fatal conditions. If one of your parents suffers from one of these disorders, you probably grew up in poverty. Since marriages can flounder when one partner is sick, you may have grown up in a single parent household, in which case you were really poor. You probably missed school as you tried to take care of siblings at home. Even if you get to college and find a good job, there is a high likelihood that you or one of your children will develop a severe, expensive illness, too, which will plunge you back into poverty----

Medical debt, hospital bills and other unaffordable healthcare costs contributed to 62.1% of personal bankruptcy filings in 2007, according to a study published in The American Journal of Medicine in 2009.

Most people believe that poor, uneducated and uninsured or under-insured people file medical bankruptcy. They assume that having health insurance coverage can protect them from financial ruin if they end up having a chronic or catastrophic illness. The shocking truth is that they're absolutely wrong!

The surprising finding from the study showed that most Americans who filed for personal bankruptcy due to medical debt and other health care costs were middle-class, homeowners who had gone to college -- 75% reported having health insurance.

Over half the people who go bankrupt do so because a family member got sick. And almost three quarters of them had health insurance. Disease can plunge a hard working American family into poverty. A breadwinner may have to quit work to care for the invalid. High co-payments and deductibles may eat up the family savings. Economic hardship can strain the family, leading to divorce, violence, depression which affect the other children.

I found lots of studies about the way that poor people get sick. Many of them had conflicting results. Depression seems to be the only illness definitely associated with being poor. Here are a few studies about the way that sick people become poor.

In 2003, lost productivity due to chronic disease cost the country over a trillion dollars.

A whole lot of people have to be out of work in order to account for a trillion dollars in productivity. In the U.S.

Nearly 48 million Americans have a disability, an increase of three million from 1999, and arthritis tops the list of most common causes of disability, according to an article published today in the Centers for Disease Control and Prevention's Morbidity and Mortality Weekly Report (MMWR).


The disability caused by arthritis often robs people of the ability to live independently. People with arthritis commonly report needing help getting around inside their home, getting out of bed or a chair, bathing, dressing, eating and other important activities of daily living.

With that much disability, working may be out of the question.

A study done in Europe showed that chronic illness was associated with unemployment. Keep in mind that the people in this study probably had access to health care.

Among employed workers 18% reported a poor health, whereas this proportion was 37% in retirees, 39% in unemployed persons, and 35% in homemakers. A perceived poor health was strongly associated with non-participating in labor force in most European countries. A lower education, being single, physical inactivity and a high body mass index were associated with withdrawal from the labor force. Long-term illnesses such as depression, stroke, diabetes, chronic lung disease, and musculoskeletal disease were significantly more common among those persons not having paid employment.

In the U.S., lack of universal health care complicates the picture. This study commissioned by the Robert Woods Johnson foundation found that many uninsured Americans with chronic illness do not have a source of income.

Even if you qualify for Social Security disability---a process that can take years and require the assistance of an attorney---your problems are not over. Having Medicare helps. You are now in a situation closer to that of disabled folks in Europe, since you can see a doctor. However, your medications will probably not be covered. And, in order to qualify for Medicare, you must be unable to work---in other words, you must become poor and be willing to live in poverty. Social Security payments are likely to be a small fraction of what you made when you were working, so there will be a lot of things that you have to forgo----like recommended foods to control your condition, exercise since you probably live in a heavily polluted crime infested area where rents are dirt cheap, and, of course, the medication which your doctor swears will help you feel better if only you could afford it.

Going from employed to unemployed can be a tremendous psychological burden. People start to feel worthless, hopeless. They have nothing to do but think about their pain and misery. Since they know that any improvement in their medical condition may result in loss of their Medicare benefits, they develop a fear of getting better.

IV. Walk a Mile in My Orthopedic Shoes

Meet Jim. He is a 50 something year old social studies teacher. His school increased class sizes so that they could lay off teachers. Right now, with all the standardized testing, public schools are only hiring science, math and reading teachers. Since he has diabetes, heart disease and high blood pressure and since he is only ten years away from retirement, no one wants to hire him for a new careerthe kind of job that provides health insurance benefits. If he gets a minimum wage service sector job, he will not have health insurance, and therefore he will likely die before reaching the age of 65. He is not sick enough (yet) to qualify for Social Security, but just give him time. In a few more years, he will have a massive heart attack and develop congestive heart failure. Or, uncontrolled sugars will put him into renal failure---dialysis is one of the quick ways of getting your Social Security.

Meet Charlene. Her mother had lupus. The family scraped by on SSI. Charlene was the oldest, so she missed a lot of school taking care of her mother and siblings. Not that she missed much at school. Being poor, her family lived in a school district plagued by overcrowding. Charlene was passed through even though she could not read. She holds down two jobs, neither or which has health care benefits. She will never get promoted at either job, since her reading skills are poor. When her daughter, Tanya begins to develop stiff, swollen joints, she thinks about her mother. Eventually, she scrapes together the money to take her child to a doctor, who diagnoses her with Juvenile Rheumatoid Arthritis. The condition can be treated, but right now, Charlene makes too much to qualify for SCHIP. So, she quits one of her jobs. Now, Tanya can get her medication. But the family often goes to bed hungry at night.

Meet Juan. He was his familys breadwinner, making good money in a construction job, until a drunk driver forced him off the road and damaged his spine. The driver was uninsured, so he will not be getting a fat settlement check. Instead, he will lose his job, his house. His kids will quit school and go to work to help pay the bills. His wife would look for work, but then who would look after Juan and take him to all his medical appointments? Juan qualifies for Medicare, but when his wife starts having diabetes symptoms from all the starchy, cheap food the family has to eat, there is no place for her to turn.

Patty has sleep apnea (though she does not know it). She overslept one time too many, and she was fired for cause. Therefore, she will not get unemployment. The public clinic where she now goes for health care can not afford sleep apnea testing or treatment, though they have her on round the clock narcotics for her (sleep disorder induced) fibromyaligia. Since there is no public bus system in her town, she is still driving a beat up old Honda. One day, she will fall asleep behind the wheel and die in a car crash, leaving her two teenaged kids orphaned. They will be passed from foster home to foster home, a practice which severely limits kids ability to get an education. This means their future financial prospects are not good. At least one of those two kids will also develop a sleep disorder. And so it goes.

V. To each according to his needs

The solution to our countrys problems seems clear enough. The motto to each according to his needs (Karl Marx) needs to be applied to healthcare. High deductibles and other out of pocket expenses may be necessary to keep healthy people from overusing their medical benefits for frivolous reasons----say cosmetic treatments---but they have no place in the care of people with severe chronic medical problems. The sicker you are, the less you should have to pay out of pocket for your care.

Everyone should have access to health care, but those most in need should have improved access. If your city does not want to pay for a bus system, then it should provide transportation to and from doctors offices. Social Security payments should reflect the increased needs of people with certain types of diseases. If you have to stay home to take care of an ailing family member, you need more than just the job security of the Family Medical Leave Act. You need a guaranteed income of your own.

Folks with chronic diseases who rely upon Medicare for their treatment should not be forced into the poverty of unemployment in order to qualify for their insurance. What kind of choice is death from disease versus death from starvation?

Children of people suffering from chronic disease require special education services. They need scholarships and affirmative action the same way that members of certain minority groups do. Families need to be provided with internet access and computers. Healthy food and exercise facilities are also a must. Our public schools have cut out PE and increased their offering of sugary, fat foods. While we are at it, can we just plain ban cigarettes? And offer birth control where it is needed---in our schools.

None of this will break the budget. If more people with chronic disease can work, there will be more tax revenue. If fewer people get sick, because of public health disease promotion, then our (staggering) national health care costs will drop, the way that they have dropped in most of western Europe.
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Odin2005 Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 09:51 PM
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1. Great post!
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Catherina Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 09:57 PM
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2. Rec'd. It makes no sense that we're not interested in doing this n/t
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daleanime Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 09:58 PM
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3. What?
You want us to use common sense and logic to solve problems in the US?:wow:

PS-Huge K&R.
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leftstreet Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 10:09 PM
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4. K&R
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laughingliberal Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 10:22 PM
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5. K & R nt
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me b zola Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 10:34 PM
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6. K&R
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inna Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 11:16 PM
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7. KR+21
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Jim Sagle Donating Member (1000+ posts) Send PM | Profile | Ignore Mon May-24-10 11:33 PM
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8. They're conficscating ALL the money. Without money an economy based on jobs disappears.
Edited on Mon May-24-10 11:33 PM by Jim Sagle
Will the old order of whips and chains be resurrected in its place?
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proudohioan Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 04:20 AM
Response to Original message
9. K&R!!!
PBS had did a show on this topic a few months back. Of course, it was shown in the wee hours of the morning (like 3 am)....

Excellent journal, McCamy!
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political_Dem Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 05:43 AM
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10. K and R. It is sickening how this country has no empathy for those who are truly suffering.
Edited on Tue May-25-10 06:16 AM by political_Dem
Yes, money and policies are a major issue in this particular topic, but I want to touch on something else: the lack of sympathy or compassion for people who are struggling to make ends meet while treating their particular affliction.

It seems around the rise of shock jocks and RW talk radio, America has spawned a generation of people who turn a blind eye to those who are ailing. In fact, when sick people vocalize their predicament, they often get shouted down by haughty "holier than thous" who feel that such discussion is simply "blowing hot air". In true vicious style, some Americans taunt the sick, down-trodden and scorned with accusations of "whining" or "playing the victim".

After all, the "strong, silent, stoic" individual is praised in this country. Talking about problems only lets uncomfortability develop while luring those unmoved by dire circumstances into a small inkling of emotion.

I am tired of all this viciousness. We need to have an attitude change in this country so that we consider the least of us. Furthermore, we've got to transfer that attitude into supporting representatives who do think in these terms as well.

It seems that devestating disease is a part of every family in this nation. No one escapes--whether the person sick is young or old.
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daleanime Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 10:47 AM
Response to Reply #10
14. Hear, hear....
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Lorien Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 06:47 PM
Response to Reply #10
17. As someone with several chronic illnesses I can attest to that. Add the "magical
thinking" crowd to those who taunt and belittle us. I have fibromyalgia, chronic fatigue syndrome, hypothyroid, Addison's disease,PSTD and mercury poisoning, but I've been told by Christians that I should pray about it and by the New Age crowd that I "willed the Universe to make (you) sick" and that all would be cured by a more positive attitude. Blame the patient is a favorite game in America. It helps people to believe that everyone gets what they deserve, so THEY'LL never have these troubles, of course!

Neighbors know that I'm sick and that it's a real struggle for me to work, but they still complain that my lawn isn't well kept enough and never offer to help (even though I pet sit for them regularly). When I fractured an ankle and dislocated the other knee last year, making it impossible to walk, most people just said "oh, that's too bad. Get well soon!" without offering any help at all. It was obvious that it never even occurred to them to offer help. I recall someone posting here on DU that his wife's best friend was sick and out of a job and living in her car. All I could think was "then why the f*ck don't you offer to have her stay with you???!!" People just don't think of helping others because we've been conditioned not to over the past 20 years. Such thinking helps keep the poor poor and the corporations ruthless. Is anyone outside of extreme Right Wingers and corporate CEOs honestly happy with this cold hearted society that we've created?
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Solly Mack Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 05:46 AM
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11. k/r
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jwirr Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 07:59 AM
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12. I read that book in college and that is why I know where pukes are
coming from. I want no part of them and I would much rather be marxist than follow their doctrine - which in the past has lead to fascism and here in the USA a very bad system of eugenics. It is a dangerous doctrine.
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Forkboy Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 09:18 AM
Response to Original message
13. A lot to read here.
Bookmarked so I can get to it all today, and K&R!
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mntleo2 Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 12:36 PM
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15. Poverty= death by1000 papercuts
Edited on Tue May-25-10 12:40 PM by mntleo2 a low income person who worked McJobs all my life and raised three kids on it, I can tell you I am paying now. I am a diabetic, and dealing with issues no older person should have to live due to...

Every day I ignored those flus because I did not work so did not get paid and missing one day of wages would put us on the street
Every day I walked the floor with a sick baby ~ and then went to work with no sleep
Every day my children and I lived in need for the basics.
Every day I could not seek medical help for any of us.
Every day I could not pay the rent even though I worked a 60 hour week.
Every day I drove to work insuranceless because I could not afford it and prayed I would not have an accident and hurt someone
Every day I begged DSHS for help and they sneered at me as if I were a piece of trash
Every day my psycho boss yelled at me for being late while I scrambled to find someone ~ anyone ~ to watch my sick child that no daycare would take (even though they probably got the bug FROM the daycare)
Every day I cooked something full of starch and fat because it "streched" the meal so we could all eat
Every day I prayed for my kids when they got into trouble because I was too busy working instead of being home to care for them
Every day as teens I could not make sure these kids got to school who would rather party in my home with their friends instead
Every day I faced a truant officer, judge, principal, or entitled social worker that blamed me for not being there for those teens but would condemn me if I was not working for a wage
Every day I feigned gratefulness whenever someone rich gave me something I did not need that was their garbage ~ because MAYBE someday they would have something I desperately needed ...
Every day I watched my kids go to school with shoes falling apart
Every day my family and I pretended we had more than we had so we would not be blamed for whatever other issues poverty causes
Every day it was assumed I was a drug addict and therefore why I was poor when I do not do drugs
Every day I watched my sisters and brothers in poverty endure the same things and blame themselves instead of seeing they were living examples of racism, sexism and classism in action

These are a few reasons why ... I could go on for 1000+ times that caused me sorrow, shame and finally anger. It was then I became an activist for low income people hoping to make sure the next generations did not suffer as my family and I did.

Cat In Seattle - Board member of Parents Organizing for Welfare and Economic Rights (P.O.W.E.R.):
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dchill Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 04:43 PM
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16. "None of this will break the budget."
That doesn't stop the GOP Teapukes from complaining that it will.

Oh yeah, K&R!
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Missy Vixen Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 06:51 PM
Response to Original message
18. My mom had RA
Complications of the disease killed her.

I have another auto-immune illness. Right now, I'm uninsurable, and we have no insurance as a result of my husband getting laid off. It is my worst nighmare that I start manifesting symptoms of any additional disease.

We pay out of our pocket for my husband's medications, which now top $500 a month.

I'm wondering how long it's going to be before the current administration realizes that the average American can't go without insurance, and can't afford the "reform" that just got passed, either.
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Atticus Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 08:24 PM
Response to Original message
19. Among the best things I've ever read here. I hereby create and award to you---
the DUlitzer Prize for that rare combination of empathy and eloquence that stirs the heart and calls us to be better and to do more.

Sincerely, thank you.
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susanwy Donating Member (461 posts) Send PM | Profile | Ignore Tue May-25-10 08:30 PM
Response to Original message
20. Fortunate and Lucky am I...
Edited on Tue May-25-10 08:32 PM by susanwy
In my family, we have pulled together and taken care of each other, but I understand all to well that many, many, many are not as fortunate. That is why I hated the health care debate when repukes told people to "ask for help" from their neighbors and family.

My mother contracted RA in her mid 50's. Now she lives in poverty, barely able to pay for the $2000 a month infusions which allow her to get out of bed. She is a tough old bird...but she is reaching the point of needing assisted living. She has fallen in and out of the "doughnut hole" more times than I can count. My sister and I make payments on a small house for her and my sister takes care of her every day. She lives in constant pain and nothing helps, except medical MJ, which is, of course, illegal where we live.

I was diagnosed in my mid-thirties with RA and Lupus (SLE). It took four years of tests and diagnosis. I had to take a long leave of absence from work and take cytoxin for almost a year. Again, I got better and have been okay (not in remission, but okay) for almost 10 years. I searched and searched for a reason why. I was told it was because I didn't eat well, handle stress well or take care of myself and didn't get enough exercise. Or I was exposed to toxins and poisons. BS, at the time I rode my bike (with a trailer for two toddlers) to daycare and work everyday. I grew my own garden and ate a balanced diet. I cleaned with vinegar and baking soda. What I learned is that people (including many doctors), because they didn't understand auto-immune disorders, blamed the sick person. In the end I concluded that genetics is the key, there is a genetic component to all disease. If your predisposed to an auto-immune disorder, you may get sick. Are there things we can do to mitigate, of course, but since science does not know what triggers our bodies to attack ourselves, there is always the chance no matter how healthy you live, that you can and will get sick. In my case, I believe the illness was triggered by a combination of a virus I picked up at the zoo and stress from serving as a juror in a capital murder case.

I met a woman during my treatment who didn't respond well to the cytoxin and ended up a divorced, single mom barely scraping by. I know why, her co-workers, her family, society made her feel ashamed of being sick. My family (most) did not. I've seen the healthiest people in the world get sick and die and I've seen the people who live large and never, ever get sick. But, I was lucky, I had worked myself through college and had a good job, with good insurance and a great boss. I responded well to treatment and got better.

I don't know what the answer is...we don't make it easy to eat right, exercise and reduce stress in this society. And again, even if we did, some people will still get sick. The prevalence of auto-immune disorders is much lower in other "socialist" countries. Maybe it is because they have six weeks of MANDATORY vacations, health care from the cradle to the grave and quality child care. The "to each according to their needs" can be expanded to "to all according to what is right and humane", then maybe we would have less sickness in this messed up country.



edited to say "Happy to recommend" :hi:
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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-26-10 09:39 PM
Response to Reply #20
24. Just saw this when I came here tonight -- you're so right
about it all. I'm sorry to hear about your Mom -- having been through serious illnesses with both my parents (Dad had Parkinson's, a couple of strokes and other stuff and Mom died of cancer). I know what a struggle it is and how painful it is. They were lucky -- they had the resources to live well through all of it. In this country, they were very, very lucky and all too rare. I hope if your Mom does to go assisted living she ends up somewhere that has lots of positives for her -- I've seen a few really good ones that in many ways can help improve peoples' lives.

And the doctors in our lives can make huge differences. I've been pretty lucky but I have fired a couple of doctors who were completely inappropriate in terms of either their medical care or their attitudes/poor interpersonal skills/communications to me. Fortunately, none can pull crap with me -- I have a strong background in neuroscience & biology and have educated myself about any medical condition that has confronted me. It's easy for me and it makes it easy for me to be a real partner in my healthcare. It pisses me off no end when I hear stories like yours when it comes to how people are treated by medical professionals. I've spent many hours explaining things to patients & going back to physicians to insist they explain things to patients, listen & answer their questions. I've given a couple of physicians hell for their poor communication & non-medical treatment of patients. The nurses who staffed my floor of one hospital where I worked were always sure I'd be fired any minute because of my confrontations with a couple of senior specialists. But you know what? It worked and the patients got what they needed. I shouldn't have had to engage in those confrontations but sadly, docs like you had are all too common.

When I was diagnosed with MS, I had a great neurologist who said don't get overtired, avoid stress (ha!) and get on with your life. What great advice! Someone referred a young woman to me who was in college and had been diagnosed with MS. The neurologist who diagnosed her said, "I'd rather tell you anything but this...." Jesus, how to fucking scare the hell out of her and give her dire expectations! This (at the time....don't know now) person with few symptoms of MS had her whole life to look forward to and she felt like her life was over. That's the power of physicians and their communications and too many are absolutely clueless.

I was like you -- I ate healthy (still do), exercised a lot regularly, etc etc. As I said in my previous post, none of us know what's coming and we can be as healthy as possible and shit still happens. Good docs know that and acknowledge it.

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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Tue May-25-10 09:34 PM
Response to Original message
21. As one who has walked and rolled a mile in those shoes
thank you for this powerful post. I have a Ph.D. and worked in a profession I loved. My MS caused me to not be able to work in my loved profession, one I trained for through not just my formal education but also an internship & postdoc. And I worked part-time through most of the years of education. In short, many years of education & hard work to get to my Ph.D. working point. Believe me, this isn't a pity plea -- I loved all of those years, including those I worked afterward. And thank god I saved during those years because the U.S. system has totally screwed me afterward.

I worked part-time in a private practice after I had to quit hospital work & full-time anything. I worked too much to claim disability & social security, which enabled further savings. But I lost my insurance as a result, certainly wasn't eligible for Medicaid and was shut out of Medicare/disability because I worked too much.

Skip to years later when I can no longer work at all and my MS has advanced significantly, including significant cognitive & physical declines (just this year I was hospitalized twice....with no insurance....for MS, with the second time being the onset of paraparesis that has landed me in a wheelchair). I had to urge my discharge from the hospital on the second hospitalization for 10 days and decline strongly recommended transfer to a rehab facility because of the costs involved. And top it off by being diagnosed with chronic renal failure, which most likely occurred to MS bladder problems. I've been able to keep that stable through a pretty putrid diet so hopefully it will not advance to the dialysis & transplant point, but one never knows. And now I'm early but partway into the process of evaluation for possible bilateral breast cancer. I'm very lucky to live in a community where I've been able to receive free ongoing general medical treatment that is adequate & appreciated, if not as thorough as I was used to under my previous insurance programs. Above & beyond the general treatment, I've been treated free of charge by both my neurologist & nephrologist, again thanks to incredible local programs and physicians who donate their time. If diagnosed with breast cancer, that will also be covered for which I am beyond grateful. If I develop most other kinds of cancer, though, I'm screwed.

Despite all of the above, I've been shut out of disability and Medicare because of a bizarre loophole -- because I didn't claim disability and the need for Medicare for about 7 years after I stopped working full-time (and had insurance), I'm not eligible for disability/Medicare. Go figure -- you don't burden the system for 7 years and now desperately need disability/medicare and aren't eligible because you didn't burden the system. Only in the United States.

I've wondered if people think that those of us without insurance are thrilled with the insurance plan that passed. I can't speak for others but I'm certainly not. I'm depending on my savings to get me through the rest of my life, be that 5 years or 20 years. I saved smartly and I've lived smartly so I can do it.....but not if I have to pay ridiculous amounts of money to corrupt insurance companies who will, I have no doubt, serve to exclude me from the services I currently receive (because I have insurance, no matter how costly & crappy it is) but not compensate with that loss with equivalent healthcare. I'll wait to see but as of now, I feel royally screwed by Obama & most of the Democrats in our legislature.

We shall see. In the meantime, this post is too long and I doubt many will read it. I don't care -- I really appreciate your OP and am grateful for the rant it urged me to get out.

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susanwy Donating Member (461 posts) Send PM | Profile | Ignore Wed May-26-10 07:01 PM
Response to Reply #21
22. I read it....
Edited on Wed May-26-10 07:08 PM by susanwy
and I agree with your assessment of the new "insurance reform". Oh yea, they have to cover you now, but the "compromise" with the repukes means that the insurance mafia can still charge you more than someone without a pre-existing condition.

I have never worked my current job full time (until recently) because of my Lupus. But, I keep my head low, do my job and make no waves just so I keep my employer paid (partially at least) insurance, which now includes long term care. Even though, at least in the last couple of years, I've felt discriminated against because of my age, disability and sex. Anyway, I digress off topic...

I may be crazy, but I'm trying to finish my Masters so I can try and move to a different job. One thing I do hope is that the "high risk pool" may, just may, allow me to get another job and not have a gap in coverage.

I have a good friend with MS and my sister's mother-in-law and father-in-law both suffered from this debilitating illness. I wish you all the best and let us both hope that we are wrong and our health care will get better under the new plan.



edit for sp errors
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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Wed May-26-10 08:55 PM
Response to Reply #22
23. Thanks for the good wishes, Susan, and the same to you.
I worked with a number of patients who had lupus -- no less a barrel of suck to deal with than MS. I hope it largely remains in abeyance enough for you to avoid the many systemic problems that can come with lupus. Glad you're still able to work!

As one who went through through grad school with MS, I heartily encourage you to go for the Masters. I do sometimes get pretty sad because I can't work and I LOVED what I did. But I also loved grad school & the time I was able to work full-time so I have that forever. I made a difference in peoples' lives and that continues to be a source of happiness for me. I have the sense of accomplishment of having overcome my struggles with MS as I worked and went to school and so much more. And it helps me now in many ways -- it keeps me tougher than I sometimes want to be and I now need to be. No one knows what the future holds. I worked in hospitals and, as I'm sure you well know, no one expected to end up in a hospital with terminal illnesses, disabilities, life-altering injuries & diseases, and all of the rest that inexorably change peoples' lives in small or big ways. I've seen the struggle and I've also witnessed the positives that come for many people who, among other things, discover strengths in themselves they had never previously recognized.

I certainly learned as I grew up during my early adult years and through grad school & my work NOT to imagine what the outcome of things might be. Sure, it's great to weigh potential outcomes & consequences of approaches we take to problems, etc. But imagining a dire outcome as so many do when faced with potential diagnoses (like breast cancer) or when we doubt or stop ourselves from doing things like furthering our educations because of what could potentially happen with our diseases (and so many other life issues that make people hesitate or stop) -- we just don't know what will happen and I say we should GO FOR IT!! :fistbump:

Thanks for reading!

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planetc Donating Member (247 posts) Send PM | Profile | Ignore Thu May-27-10 06:26 AM
Response to Reply #21
25. a) your post is not too long, and b) I read every word
(a) Those of us who read McCamy Taylor every time she posts are sensitive on the point of "offensive length." It's a canard, and a way for a few people to attempt prior censorship of her posts, which are passionate, well informed, well expressed, charmingly illustrated at times, and eminently worth reading, like your post.

(b) I am personally depressed by the insurance "reform" plan that passed. When they started arresting the single-payer advocates who attempted to talk, just talk, to Congress, I stopped signing petitions. But we still need single payer health care, with dental, long term care, and chiropractic care included. We need to treat everybody as though they were, well, human beings, and deserving of the best care we can offer.

c) I don't have the solution to our totally deaf Congress, but taking the enormous sums of money out of the election process should be a real help.

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tpsbmam Donating Member (1000+ posts) Send PM | Profile | Ignore Thu May-27-10 09:22 PM
Response to Reply #25
26. Thanks tons, planetc. And I completely agree with all of your points
I'd like to single one out but can't. As I watch both parties in response to the economic fiasco, oil issues, healthcare....and on and on, I'm more horrified than I've ever been about the level of corruption engendered by the money in the election process. And AMEN to single payer!

Have a scary day tomorrow and little things these days pick me up. You made my evening -- thanks. :hug:

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