Friday, October 24, 2014

U.S. Spends 40% less on Disability Benefits/GDP than All Other Nations

Less than 1% of people who are disabled are able to come off of disability and return to work. That number should not statistically be possible. Less than 1% who are disabled become un-disabled? That was told to me by a Social Security Administration official. And looking at the picture further, it's even less rosy.

According to a recent analysis by the Organisation for Economic Co-operation and Development, or OECD, the United States has the least generous disability-benefit system of all OECD member countries except Korea. The OECD describes the U.S. disability-benefit system, along with those of Korea, Japan, and Canada, as having “the most stringent eligibility criteria for a full disability benefit, including the most rigid reference to all jobs available in the labor market and the shortest sickness benefit payment duration.” In addition, the United States spends less as a share of its economy on incapacity-related benefits than other nations. In 2009 public expenditures on incapacity-related benefits comprised just 1.5% of U.S. gross domestic product, or GDP, compared to an average of 2.4% for all OECD nations.
The Facts on Social Security Disability Insurance and Supplemental Security Income for Workers with Disabilities— Center for American Progress (emphasis mine)

And no one is getting rich on disability. Before the Great Recession, the overall employment rate— which the Social Security Administration defines as: annual earnings over just $1,000"— was only 12% in 2007. That means 88% of people on disability earned less than $2.70 a day. When I was employed, my morning tea cost more than that! And yet there are still alarmist articles like this one from Forbes which claims:

Benefits that would replace a significant portion of their previously earned wages, while also qualifying them for Medicare, our generous health-insurance program for the elderly. Today, the United States spends around $200 billion a year, literally paying Americans not to work.

I don't know what you consider significant, but my income is only a little over one fifth of my previous income. Also, I am limited to making $1,000, or I loose my benefits. This, while also not underpaying me for my skills (per Social Security rules). That means I can only work 6.9 hours per week. A old girlfriend of mine who was in sales can only work 3 hours per week! You find either of us a job like that, and we'll take it!

So the difference between most and the poverty line is only $4,000, and I can guarantee you most disabled folks medical expenses are more than $4,000 in a year. My medications alone average more than half that, and I've turned down my doctors offer of a few medications because they were too expensive. and let's not forget how much dental care costs should anything go wrong with your teeth, because Medicare doesn't cover dental at all, never mind that loads of medications and conditions ruin teeth and can make wearing dentures impossible.

And Social Security rules are made to keep recipients at poverty levels, after first subjecting them to the most rigorous screening process in the world! Not only do they want to keep our group as small as possible, but they want to ensure our dependence on a system that keeps us in poverty! Less than 1% of small group to start ever make it. It's worse if you were disabled after 30 without having had paid enough FICA tax. That is, if you receive SSI along with SSDI benefits, you are limited to only $2,000 in assets whether earned or in gifts, a number increased only once, in 1989, and never adjusted for inflation.

What I see is a system that punishes its most needy, trapping them in a world where their suffering is only compounded by the constraints it places on them, saying essentially, "If you are truly sick (which we highly doubt in the first place), you don't deserve a route to success. The "Pursuit of Happiness" is only for people created equally, and since you are less than, you shall receive less than." As of March 2013, the average monthly benefit for a disabled worker was about $1,129, with male workers receiving $1,255 per month and female workers receiving $993 per month on average.

Yes, Social Security has programs for becoming "financially independent," but to take advantage of these programs, you are required to plan to quit using your benefits as a result of receiving this "hand up" on a timed progress line (usually 3-5 years), regardless of whether or not your condition has improved. Basically what they're saying is, we know that your disability should not be an impediment to you being a fully functioning member of society. We know that if we help you learn some new skills, get assistance setting up your business, or invest in some small ticket items for your future (never to exceed the amount of your monthly benefits), then regardless of the condition that disabled you, you will magically be able to make enough money to support yourself and no longer need disability benefits or Medicare. (Nevermind that it would have been impossible to get health insurance after being disabled until four years ago.)

If you made any sort of success for yourself prior to becoming disabled, you're penalized and kept from a career that was successful up until the time that your health went south. Social Security requires that you never ever charge less than fair market value for your work, even if you're providing a discount because you may not be able to meet deadline like someone who is health. That's not what matters. What matters to the Social Security Administration,kk is you're doing the same work, and therefore must charge the same as a healthy person would.

In this way, many people who would like to make themselves financially stable are scared into avoiding assistance services, because we are required to plan to leave the safety net of disability benefits, regardless of whether or not our condition has improved. Income, rather than illness, really determines if you are disabled in the U.S.

Meanwhile, the stigma that disable people are somehow cheating everyone else out of "hard earned" money (as if disability is "easy" money) by inflammatory articles like this one from Forbes, "How Americans Game the $200 Billion a Year Disability Industrial Complex" This title makes you think that people on disability make $200 Billion a year, but that's just not true. It's the Disability Industrial Complex that's worth $200 Billion. That number is not an entitlement. It's an asset value! And what's with the word "Game"? What an explosive word to use, nevermind that it ignores all the facts!!

There is some hope on the horizon. The ABLE Act would allow those on SSI to create health savings accounts and not be limited to $2,000 in assets. This is especially important to children on disability as they grow older. If you're disabled as a child, you've never paid into Social Security because you've never worked. Therefore you're on SSI and limited to never owning more than $2,000 in assets. Mind you, the estimated cost of raising a disabled child is around $1,000,000. Basically the government has said to disabled children: Don't ever try. You were born at the bottom and you will stay at the bottom. A disability should not create a class system in this society, but that's exactly what we've done.

Let's change this!

Tuesday, October 7, 2014

Father, Welcome to My World

My father has leukemia. It is not the fast-moving kind, so there is a blessing in that. People can live for decades with this type of leukemia, and the doctors don't suggest anything should be done at this time. Still, he's frightened, and is now required to see a doctor every six months to check it. He's also already experienced doctor misdiagnosis, as they ordered a colonoscopy seeing a "mass" that was actually one of his own organs. Regardless, they terrified the poor man. He was sure they were going to tell him it was doom. And after going on that medical emotional roller coaster, he understand me and my struggles even more.

I've been sort of poo-poo'ed throughout my illness by both my parents, though my father has been consistently more supportive (my mother calls me names). Now, I have someone else going through what I've been through first-hand. It's different when you almost die and you have over a week in the hospital as the doctors piece you back together. That type of experience does change a person, and does make you immediately assume all other news you receive is going to be just as fatal or near fatal.

He understands me now.

He understands my need to say, "I love you," at the end of every call, because it may be the last time, and he says it first now. He understands how hard I've been working, and he supports my decision to not try and return to full-time work. He's going to support me as long as he can. I'm doing my best to make my own future, and he thinks I have a good idea, and that I should follow my dream. (This from the man who I had to fight to get my education, education that he gave my sister for free... he's always felt guilty about that.)

And he's depressed now. He's struggling. And I get it. It's difficult to have hope for a bright future when the bullet has already left the gun, and it's just a matter of time before it strikes you down. I get that. And I get how painful it is as the disease ravages you, unchecked. He has a harsh future ahead of him, even with all his recovery from the stroke, and that's difficult to know. There is a freedom in knowing what has caused your suffering, if you've been hurting for years and no one can tell you why. It's different when you just think you're growing old, and find out, oh, no... it's far worse than that.

I am doing the best I can to help him, though we have a good laugh at some of my poorer attempts. His eyes have been opened to a grim reality, so I understand that it's not so easy. My heart goes out to him. I know from experience how difficult this road is.

And though I hate that my father is now a part of this club, it's nice to not be so alone...

Thursday, September 11, 2014

So much, I don't know what to think!

First, I'd like to thank everyone who has been praying and sending their energy to me and my family. IT WORKED. My father has made a miraculous recovery: his paralysis is gone, he has a few remnants that will require therapy, but his prognosis is good. Beyond that, he has had what I can only describe as a "spiritual awakening" (aka, a "come to Jesus" moment). He told me, "I need to rethink everything!" And yeah, he does. But true to form, the day after he got out of the hospital, he went back to work! (He's self-employed, so mainly it was to let everyone know he was okay...). So, yeah... GREAT news.

And that's not all.

I went to my new endocrinologist and she was AMAZING. She reminded me of Doc Broyles, and she patiently took my story spending over 45 minutes just taking notes and getting my background. She not only believed me, she kept repeating "Your story is consistent, so..." which I can only interpret as, "I don't think your lying, so...". That was so reassuring. Then she apologized for my bad experience at Anschutz and told be that the doctor I encountered can get very defensive when challenged, so I was unknowingly setting her off! Plus, I was informed when she was proven wrong, that probably brought out the worst in her. However, she's apparently an excellent teacher. I was floored.

But wait! There's still more!

She took a thorough background of my estrogen levels and let me know that it should be possible for me to have children! She's willing to support me having a child even with as much trouble as I've had, even with my health risks!!! I went into orbit... the only thing that I know I've wanted to do and be is make a child from my body and be a mother. I had put that beautiful dream under a bell glass and stuck it on a shelf, like a butterfly pinned and put on display: beautiful but impossibly dead. But now... a child of my own...


It's so much, I don't know what to think! I try to, but then I'm just in awe of how amazing it all is. This magnificence is staggering...

So THANK YOU!!! To you, the stars above, and any divine assistance!

I'll try to update soon, but man it is hard to think! lol

Until then, thank you again.

Friday, September 5, 2014

Walking Towards A Future Me

You'll forgive my moment of darkness in my last post. I haven't ever been around wholly supportive environments. If I had healthy friends, it was purely by accident. I don't know what it means to be "unconditionally loved" and I don't say that asking for your pity, simply your understanding... I wouldn't recognize normal and healthy if it bit me on the nose. But this hasn't always been terrible! I know where my home is... I'm just too medically sensitive to it (me + humidity = NO). And I've been feeling like a lonely little petunia in an onion patch for years now... But I do have a tribe, be I far from them. I have been blessed by the strange and the wonderful, and I look forward to joining your ranks again!!

I get to have standards in my life, and I know what to recognize. I can trust my wisdom, and my ability to avoid danger, and beyond that---my Deity takes care of the rest. I have denied myself my true self for far too long. My life may be broken shards, but how else you gonna make a stained-glass window?

[Pause for a brief announcement:]
I'm still in shock, I just got the news. My father's had a stroke and is paralyzed on the right side of his body. His brother is there, tending to him. He's alive and in hospital. I may be silent for a bit...

Sunday, August 31, 2014

Chronic Illness Haiku

Do not hug me, I'm
Broken, and the sharp shards of
My life will cut you.

Tuesday, August 26, 2014

Just Say No to #YOLO

The You Only Live Once (#YOLO) meme has bothered me for some time, and I've recently discovered why. The Japanese have a saying, "Fools learn from experience. The wise learn from history." But beyond immaturity of the people who use #YOLO as their pre-debauchary battle-cry, the very concept of "you only live once" bothered me, and up until now, it didn't make sense to me. I mean, it's technically true: we do only get one life. But that's not exactly what's being said here. Life is a noun. Live is a verb. And that difference turns out to be pretty important. Because looking at it that way, you discover that "you only live once" is NOT true. I'll explain why...

I live every day. Every day that I am alive, I live. The only way for me to stop living would be to die. So saying "you only live once" isn't true. Once is a single event. But your life isn't a single event. It's a whole bunch of events, many of which we get multiple opportunities to in which to participate. It's "Once Upon A Time" to show that the story you're about to hear is unique. "And this one time, at band camp..." Saying "Once" is to pre-load the meaning that this is a "once in a lifetime" event, only that's rarely ever the case. Additionally, a snappy comeback to #YOLO is #YODO... You only die once, too! Only this never satisfied me as on point... there was something still missing, and I finally figured it out.

Ther real meme should be #YOGOL, or: You Only Get One Life. This properly conveys the importance of living your life the way you see fit, without doing risky behavior like cliff diving to prove a point! You only GET one life conveys the importance of preserving your life while living it for your sake. #YOGOL strips out all that stupid peer pressure of, "Why don't you want to? #YOlO!" and shoves it right back in their face. Just because you've never done something before doesn't mean you should try it! Most people have never experiences a gunshot wound either, and I don't see folks lining up for that once-in-a-lifetime experience!

So the next time you see someone throw down a #YOLO hashtag at you, tell 'em: "#YOGOL & no thank you." Most will try to defend themselves, but a few might actually get the point. There's a big difference in treating your life as a noun, an object that is replaceable, and a verb, an action you perform. By changing the verb to a noun, they've been able to take something that is not true and make it sound true. That's dangerous enough alone, before considering the dangers involved in the #YOLO act they're persuading you to do. It's like knowing a dangerous bridge is unsafe, but teling exeryone it's fine and if no one gets hurt in the process, why bother with the truth? Nothing bad happened, so they have no reason to be angry! Right?

Wrong. Saying #YOLO means you're putting the other person at risk for your own gains using a subtle distortion of the truth. If, by some miracle they don't get hurt, it's no thanks to #YOLO or you. It was pure luck, and luck can run out, so be careful. If they do get hurt, there will be hell to pay (and possible lawsuits), for not informaing the other party of the risks you knew. There are so many things not worth dying or getting injured over!! So let's get together and get folks to drop the whole #YOLO meme and start saying #YOGOL instead. It's time we put these hashtags in their place.

Tuesday, August 19, 2014

Skeptability | Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker

This article is a must read and is spot on: Skeptability | Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker If you're a cronic pain patient, and especially a young chronic pain patient, you know this all too well. ER doctors see patients so fleetingly. As such, they are mostly trying to make sure a process is completed, rather than a patient treated. They leave treatment to your GP. Their job is to stabalize you and get you on the road to recovery (out the door) or transfered to hospital and longer-term care (also out the door). Pain is just a symptom and an annpying one, because it instantly means the government looking over your shoulder. All narcotics require forms in triplicate with a DEA assigned number that allows the, to prescribe those narcotics. But use "too much" (and they never tell you where that line is) and you could lose your career, get sued, and all sorts of woe betides. It's easier to throw a patient out as a druk seeker than to treat them as a pain avoider. Which, of course, suits the DEA just fine. Nevermind that 50% of drug users outgrow their addiction, by their own statistics, they're winning the War on Drugs (and ensuring their pensions).

Me? I'm from Missouri, the "Show Me" state. I'd like the DEA to show me how they've "won." I want them to show me how this has made our society better. Because, that's the point, right? Keep the "bad" elements out of society and only the "good" elements will be left, right? Except, that's not exactly what happens, is it? Because these things are illegal, it automatically involves a criminal element, by definition. And if you can't go to the courts if someone robs you or screws you over on a contract, you automatically involve vigilanti justice. That means violence will ensue. You've now made a problem three times as worse than when you started, just because you drew that line and said: "that's illegal."

And what do we do with drug addicts besides lock them up? Hopefully we avail them to a treatment program where ... wait, treatment? Doesn't that mean medical? Why, yes! Yes, it does mean medical: drug addiction is categorized as a disease of biological origin that responds favoribly to a regular treatment program, just like any other disease. So what you're saying is, there are certain diseases that make you a criminal. Really? That's what we want to stand for in this country? And have other patients who are at a disadvantage but who aren't criminals caught in the cross-fire as well? Tell me you're starting to see what a bad idea this is...

But we couldn't do that! Decriminalize ALL drugs? There'd be *madness* and chaos in the streets. We would lose all control and descend into a sinful decadance as we all checked out of reality. Seriously? You mean to tell me everyone is just salavating over the idea of getting high, and the law is sacing them from themselves? You really expect me to believe that in this day and age? When Portugal has done so, successfully, for over a decade? Even the CATO Institute says the DEA is essentially solving a problem it created, and we'd have been fine if we'd left well enough alone. They're a Prohibition dinosaur that needs to go extinct already. We have destroyed our medical system... for what? Stop people from feeling good in certain ways or amounts? What sort of payoff is that?

We really need to change the culture in this country and wake the hell up.

Monday, August 11, 2014

#MTLA reaches 100,000 Page Views! #milestone

I am pleased to announce that this blog has reached 100,000 unique page views! I couldn't have done it without you! As a reward for your continued support, I give you Make This Look Awesome News!, aka, MTLA News, a weekly newsletter, published on Monday, featuring news from myself and trusted sources in the health government/industry complex, brought to you by Paper.li. Go check it out! And THANK YOU again!!! This is all thanks to you....

The Dangers of "Positive Psychology"

Everyone wants to be happy. At least, that's what we believe, especially in the U.S., where all our movies have happy endings. The proponents of positive psychology will tell you that a happy brain performs better on tests, better than neutral or stressed, and can help us live longer, more productive and enjoyable lives. Sounds pretty wonderful, right? Except when you try to out it into practice, there are some drawbacks that appear. One major drawback is when things fall apart. Positive psychology has no better answer than, "look on the bright side! Find the good in this! Don't put your happiness off as something that will happen after you reach a goal... have it right now AND reach your goal!" Except that life doesn't work that way, and now studies are showing what I suspected: happiness can be hazardous to your health.

It's simple, really. Who goes about solving problems when they're happy? What's to fix? When we feel great, the world is a wonderful place. Who complains when they're happy? Who watches out for bad things coming our way when everything is fine now? Why be such a Negative Nancy or Gloomy Gus, when we can be joyful in everything we do? there are no problems when your happy! It's easy to see how things are not a problem, and therefore no solution is necessary. What, me worry?

The truth is pessimists live on average TEN YEARS longer than happy people. And the truth is a pessimistic or realistic outlook is MUCH better at handling stress and misfortune. And when you have a chronic illness, there's a lot of stress and misfortune. Worrying when you *know* something is wrong is NOT a bad thing!! Oh, sure, other people might not like my attitude, but they don't have to live my life, do they?

Leslie Martin, co-author of the 2011 book "The Longevity Project: Surprising Discoveries for Health and Long Life from the Landmark Eight-Decade Study," found similar results in a long-term study that followed 1,528 people over eight decades. Among other health-related findings, the study showed that the subjects who were identified as most optimistic as children were the ones who died the soonest.

What most people haven't experienced, and therefore they do not know, is YEARS OF FAILURE while surrounded by some of the best and brightest minds our society has to offer (doctors & nurses). That would make anyone pessimistic. Every time I was given a new medication, I was told, "This time, it will work and you'll get better!" I would pray and hope as much as I could, I would send out good energy to the Universe and work hard to accumulate good karma so that THIS TIME, it would work. I would meditate for hours, visualizing a healthy me, so that reality would manifest that outcome. I'm betting you can guess how well that worked!

I got tired of the roller coaster. I got tired of trying to keep my spirits up while enduring one failure of a medication after another. Nothing was working, and I mean nothing. I was kicked out of no fewer than five doctors offices, being told, "I'm sorry, we have nothing left for you." I mean, I know there are people who claim they've tried everything, but I actually was IN an experimental study whose protocol demanded that, "all other therapies had failed." So I am one of the few people who indeed HAS "tried everything," including Eastern and alternative medicines. It is not pessimism when it's the TRUTH.

When I gave up hoping, I freed myself from all that misery. No more would I be slammed to the ground in despair and disappointment. If a medication worked, fantastic! I would be happy then, but there was NO use to getting all worked up ahead of time. All that was doing was setting myself up. And then, when I wasn't able to maintain my good mood in the face of bad news, positive psychology made me feel like a failure because I couldn't hope. To me, hoping became a sign that I didn't know what was going on, but whatever it was, it wasn't going to turn out well for me. Hope became a feeling associated with my powerlessness to keep bad things from happening to me. Hope was the veil I threw over my head, trying to make the world soft and dreamlike, only to find that all it did was cloud my vision and keep me from seeing the potentially bad things headed my way.

So it was a HUGE relief to find out that indeed, pessimism is actually better at handling stressful situations. My experience with happiness and hope being liabilities instead of support is absolutely correct! I was NOT a failure for my negative attitude, in fact, that was the best attitude I could adopt for my situation. People who are negative and worry more are more apt to take care of the little problems before they become HUGE problems. They are more cautious and don't take risks like happy people do. They can see the problems before they happen (because they're on the lookout for the negative) and therefore live an average of TEN YEARS LONGER than happy people. Take that, positive psychology!

People think that happiness is a good idea because it feels good. But I can tell you from my own hypomanic (that happy & creative stage before full-blown, hallucinating mania) experiences, feeling good does not mean thinking good. In fact, feeling good can be quite dangerous, and can cause me to be sexually aggressive, fiscally irresponsible, and insensitive to other people's feelings. I feel good, and you feel good, so let's feel even better together. Hey, it's okay for me to spend this money! It will all work out somehow, I don't have to worry, I'll find a way to get more. Oh, come on... why did that hurt your feelings? It's all in good fun, right? We're all happy here, why are you upset? Don't be so serious all the time!

For me, trying to maintain happy all the time is also very stressful, but not in the way most people view stress. See, the body doesn't care if the stress is bad (an upcoming exam) or good (winning the lottery), BOTH times are periods of increased heart rate and a stimulated body. That means a greater drain on cortisol (the hormone that allows us to cope with stress), the hormone that my body doesn't make. It doesn't matter whether the stress is good or bad, either way, I crash! And when I have an adrenal crash, that triggers a migraine, which means hours or days of pain. I've learned over the years that the Buddhists and Goldilocks have it right: not too hot, not too cold — the middle path is the best.

So while happiness may feel good emotionally, it is NOT good physically! And my attempts at positive psychology led to one of the biggest crashes I've had since I first got sick. We cannot fool ourselves that just because something feels good that means it is good. Of course people will do better on tests when they're amped up on their own internal supply of stimulants... everyone does better on tests on speed! That's how our bodies are able to survive crisis situations, by amping up all our systems to better survive the occasion. But that's not something you want to try and maintain! You'll burn your body out in the process. We need neutral and negative. It's just plain safer and healthier.

I would like to thank Shawn Achor for his work, but I would like to add a word of caution: you pulled off a few magic tricks in your presentation that you failed to mention, and as a result have started down a dangerous path. Of course young children can be talked out of their pain, but we outgrow that at a certain age and that trick stops working. We all get to an age where we realize we're being fooled, and we don't buy the b.s. anymore. And even though there is the tendency for people to think that something bad is going on when it's nothing (cute that the guy thought he was going through menopause, nice joke), but that helped us survive because it's better to assume it's a tiger when it's just the wind, than to assume it's the wind when it's the tiger...

And THAT's the biggest danger of positive psychology— it wants us to assume it's just the wind. Oh sure, it can show you that 90% of the time it's the successful way to go! And they'd be right! But if in that 10% there lies the tiger, and you land on that tiger, you're dinner, and that's 100% failure. Even though the risks are small, the catastrophic results make it such that it's better to "err on the side of caution" and assume things are NOT going to work out. It doesn't pay to be na├»ve.

There's the saying, "Fools learn from experience. The wise learn from history." And history tells us that the leaders of Rome kept the masses pacified with "bread & circuses." It's a political game as old as history itself: keep the people fed and happy, and they'll let you get away with genocide. It's only during economic stress that people start paying attention to what the people in power are doing. Why question authority when God is in His Heaven and all is right with the world?

We would be wise to be wary.

WSJ Infographic:

Video:


Sources:
WSJ - "A Perfect Dose of Pessimism"
NPR - "Do You Want To Be Happy? Don't Set Your Expectations Too High"