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"

Tuesday, August 5, 2014

It's Bigger on the Inside...

The Japanese & other Asian cultures believe in invisible forces that shape our lives. They aren't wrong. It was this belief that let them realize the Moon created the tides, thousands of years before Western cultures. And I, too, strongly believed in the power of far away forces and their ability to affect my life. Now that I have a real name for those forces, and recognize their comings and goings, it's not so romantic. When I had to find out why winds of change suddenly became gale force winds slamming me to the ground, it became far less dreamy. And when I discovered that, indeed, these forces that now disturb me are the same forces that moved me and everyone around me, and that it's not some juju in the wind, but the wind itself, then it became far less mystical. If you want to hold on to your wonderment, don't try to figure out how the magic trick works. For me, wonder became quickly overrated, as I discovered my internal world could be so much larger than the external world, and not in a good way. Our minds can create Heaven, but then again, they can also create Hell.

For me, it's pretty simple that oncoming storms and barometric changes are going to distrupt my mood and thinking. I know to take my brain and heart with more than a grain of salt. Other people don't, so they assume, as I once did, that their emotions are the real responses to what's really going on. They know about th invisible forces, but they don't know about their true effects, and assume only when wonder is right in front of them that there is a miracle occuring. They jever think those invisible forces sneek into every waking moment of their lives. They don't realize, as I once didn't that We are all Riders on the backs of Elephants, and those Elephants are our unconscious mineds, or (in scientific speak) they are our limbic and hormonal systems, responding to the changes in the world around us, and altering how we perceive things.

When the barometric pressure changes, our bodies must adjust to those changes. When our activity level changes, or our body's needs change, different chemicals signal the systems in our body to flow with those changes. Similarly, when we injest something, our bodies react to it as well, even if there is no "chemically active" componanents in it. It's a change to the body. The body will change in response.

What's not so clear is how all the physical stuff affects the emotional and mental stuff, because those changes are usually very subtle. It's only when the body has extreme responses to small stimuli that we notice them. And boy, do I have big reactions to small stimuli... It was this way that I noticed *everyone* in my neighborhood goes through the exact same changes, only their changes didn't result in pain, so why investigate mood changes further?

Because, like the Orient knows, it's ALL connected.

Here's how it works.

Serotonin & dopamine (our happy chemicals) also regulate blood pressure. Barometric changes effect the air around us, which in turn effects how our bodies must respond. To ensure proper continued function, as the weather changes, so must the pressure inside our bodies change to adjust to the new exterior conditions. This is why many people get sad when it rains. Not because it's gloomy, but because their mood drops due to a drop in dopamine and serotonin, as it's used by the body to regulate internal systems. The effect on mood is small, but profound enough to start fights, make children hyper, and others weepy. Unconsciously, we seek sunny days, not because of the bright light (though that too, helps mood because of chemical responses), but because high-pressure days, when our bodies have excess of serotonin and dopamine, means they're not used to regulate internal pressure, and we have excess to elevate our mood.

For me, the invisible forces aren't outside of me in some grand universe.... They're INside me, in a grand internalverse, that is far larger, and far more influential on my life. The storms within are far more devastating than any storm without. And subtle changes, like how much oxygen I get in my sleep has profound influence on my hypersensitivity and pain. Invisible forces don't have to be as big as the moon to sway our tides. They only need be as small as an atom, and our entire being can be thrown into flux.

The invisible forces are very real. Pay attention and you'll see them. But don't look too closely if you don't want to see the trick.

(P.S. My apologies to Doctor Who fans for the lack of Time Lord references after a title like that ;)

Saturday, August 2, 2014

Coming up for Air

Literally and figuratively, I'm finally getting some breathing room. First, I got some economic opportunities that may really open some doors for me. I have a roommate whose company I enjoy, and so my responsibilities are slowly being taken care of. That, and I'm on day three of sleep oxygen support, and it's having amazing results. Today, I woke up and didn't have to coffee my way to awakeness! It was such a strange feeling, because I've never experienced that before now. It was like getting two hours added to my day that I never expected to have. I was able to start my day immediately without having to wait for my prednisone to kick in. Unheard of!! The effect on my mood has been monumental. Though I'm still having bouts of daytime sleepiness, I am hopeful for the first time in a long time.

So, I should be able to start doing more soon, but I still have a few fires to put out, so thank you for your patience! ^_^

Wednesday, July 9, 2014

"Placebo Effect" Causes Greater Harm than Good

A review by Psychology Research (@psychresearch) of 21 randomized trials shows that the "placebo effect" causes adverse side-effects in 45% of study participants. This is an absolutely fascinating result, because previous studies of the placebo effect show that a pill that has no medicinal value whatsoever causes participants to improve at a rate of only 35%. What this means is that taking a pill with no medicinal value whatsoever is more likely to cause Harmful effects at a greater rate than it provides a benefit. This could have a lot to do with medication non-compliance and aversion to doctors and hospitals. If nearly half of people report an adverse effect from just taking a pill, and only a little more than a third report a positive effect, then it's no wonder why most people are adverse to taking medication!

I've always though reports on the placebo effect were a bit silly, and now it makes sense why. Scientists and doctors were always delighted to point out that we stupid patients were dumb enough to be fooled by a sugar pill. Doctors took this as proof of their magical, majestic auras... That just the idea that what you were taking was a "medicine" was enough to make you better! The idea of a magic pill was so powerful, that the medicine didn't even have to be real. Patients would get better just because you told them to. How amazing is that!?!?!

Turns out, that was only part of the story, and not even the most important part.

In fact, the though of a medicine is so powerful that it actually HARMS patients at a rate of nearly half. Nearly HALF! That means that patients are so leery, so worried about what their doctor is doing to them, that they will experience an event that convinces them a sugar pill is damaging them.

This experience of harm at a greater rate than help actually fits with what we already know about the human brain. We experience loss at a rate of three times higher than gain. For example, if you insult your spouse once, it takes at least three compliments to make up for that one slight. Similarly, when frightened, we will assume that the noise in the grass is a tiger, rather than assuming it's the wind. Why? Because that's what helped us survive vicious predators as stone-aged cultures. In the past, it has been biologically advantageous to assume the worst. So our brains are hard-wired to do so.

So it makes perfect sense that patients would report rates of greater harm than good from a medication that does nothing. And doctors should realize that they are working at a disadvantage when patients are left to guess whether a medication is going to cause harm or good. The placebo effect is NOT some positive powerful force. The placebo effect is, in fact, a powerful NEGATIVE force, and one than can undermine the entire true effect of a medication! Studies prior to this have shown that chronic illness patients have a medication non-compliance rate of a third to one half, and now we know why. It makes perfect sense, and the myth of the positive placebo effect being the only force at play is totally BUSTED.

We also now have a new understanding of non-compliance. It isn't willfulness. It isn't a lack of willpower or an inability to form new habits (though these things can exacerbate the problem). What is really at work here is the fundamental nature of the human brain to avoid harm in situations where not all the variables are known. If this doesn't speak volumes for the need for thorough patient education, I don't know what does. Humans are survivors, and you don't survive by assuming everything is just fine when you know there's something going on that you can't see. Taking a medication is a RISK. So naturally, it is better to assume that the medication is more likely to harm than help when you don't know what it does.

This also speaks to the great divide between doctors and patients in our current medical system: doctors assume that their patients should just rely on their expertise. However doctors get so involved in science that they lose sight of common sense things and get lost in ego-boosting preliminary results, like the belief that the placebo effect resulted in automatically better results for a medication. I don't know how many years it's been pounded into my head, "well, you know, you'd feel better if this was a sugar pill, so I don't know why this real medication isn't working on you..." Well, doc, turns out it's because you were misled to believe just because you have M.D. After your name that means I view you as a Minor Deity. As things really are, M.D. implies Maybe Disaster and you terrify your patients, leaving you at a deficit the moment you show up.

If I could have one wish, it would be to educate the entire medical field about this. We need to wake up to the realities of how I humanely we've been treating patients by keeping them in the dark. We have been willfully inflicting patients to psychological damage as a result of our treatment of them, believing our medical professionals are supposed to be seen as intervening angels, when really they were seen as cloak-and-dagger devils. And as long as we were told that medicine worked a third of the time just because it was called medicine, the angelic myth persisted.

The fairy tale is over. It's time to wake up to reality.

Side Effects: Telling the Real from the Imagined - Wall Street Journal, July 7, 2014