My Wish for Doctors

If I had to give one sentence to a doctor about who I am it would be: "I'm going to work anyway so you may as well help me get paid for it." That is my purpose in searching for healthcare. I just don't understand people who say, "It must be nice to to have to work." You know, forget that chronic pain is awful, forget how frustrated I get with my body throwing wrenches into my plans. I am a writer, and this blog is proof I'm going to do what gives me the most fulfillment no matter how much I'm tortured. Since my contributions can still help others, then doesn't it make sense to give me the tools so I can?

The Internet is a godsend to someone like me. Not only can I get research from around the world, translated by others into my native language and vice versa is the greatest revolution of all time. It used to take centuries to send an idea around the world, now it takes as long as your download speed. In this kind of world, I want to use my powers for good. I don't want to dull my falculties or my ability to think, that's how I make my money! I can't be blotto and get things done. My job requires that I am able to learn complex complicated computer processes and then explain them to others so they can get their work done. It's called technical writing and I love it.

On my job, I get to work with really smart people, people far smarter than me. They're doing the cutting edge work, and I get to learn about it from them, in person. I get to ask them all sorts of stupid questions, while not lookind stupid doing it, because if I have questions, the reader will have questions. It's the equivalent of getting the exclusive first interview with the creator of the latest whiz-bang technology. I get to be the first fan, the alpha follower, the ultimate technology hipster.

Then I get to take their brilliance and translate it within English to audiences of all kinds. It's an amazing stage on which I get to perform. Yeah, the audience isn't vast, but that's not the point. I don't need to be famous. There are a whole lot of other, more brilliant minds who deserve it much more than me. I stand on the shoulders of giants. It gives me a great view.

This probably explains why I can write fiction very well. I'd much rather explain and inform than entertain. A story is a puff of smoke. Technical writing is explaining how the magic is made. The second is much more useful. You can build a house on truth. You can't walk on smoke. Fun is fun, but I can make my own fun easily, regardless of my pain level. In fact, sometimes the greater my pain, the more amazing my sense of humor. Sometimes things get so absurdly serious, they become seriously absurd. You laugh or else.

Cops make lousy doctors and doctors make lousy cops. Ask amy employee at the dispensaries in Colorado and they'll tell you it was easy to tell the real medical patients from the ones who just wanted to get high. For one thing, sick people go through tons more medication becuase they're fighting an uphill battle. One dispensary I used to frequent even changed their prices on a perticular strain, because they noticed only their medical patients bought it (back before recreational pot was legalized there). It went to top shelf prices to discounted below bottom shelf. I used to take concentrated pills of the strain, and it was amazing for body pain. It's high in CBDs and is recognized as such a good medicine, even Missouri has legalized it.

I wish doctors had the same freedom to say, "Okay, so your an addict... That's normal for 1.3% of the population. We know that it's a medical and psychological problem. There's no need to be ashamed, here's how we can help you recover." And then people with real pain problems can go, "Doc, I hurt!" And the doctor can know to take it as a serious medical clue, rather than a trait to be doubted

Wouldn't that make this a better world for everyone?

Verifiable Neuropathy Symptom

Quick update: #goodnews! Thanks to a very observant medical student in the ER this morning, I finally have the doctors takig my small fiber neuropathy serieously. This student discovered I have a rare, easily-observed symptom, and one that NO ONE can fake! Even though my main complaint of my nerve damage in a stocking-and-glove pattern, we've long known the nerve damage is throughout my body. One effect is I have vision problems that cannnot be corrected with glasses or surgery. What we didn't know is that you can sometimes see my pupils flutter rapidly when you shine a light in them. It's a symptom that is impossible to fake, cannot be induced with drugs, and is a clear sign of nerve damage. As a result, not only did I get pain relief in the ER, they also put me on a fast-track referral! (I'll have an appointment this Monday or Tuesday.) Merciful heavens, they also gave me medication to be out of pain until then.

Thank you everyone for your prayers and well-wishes! They were answered!!

Bravery & Folly

I am sometimes way too brave for my own good. I will dare to do what other people won't to shake up people's preconceptions. It's not that I don't understand that what I'm doing can get me burned. It's not that I don't hurt when I burn. It's not that I haven't considered both sides. In fact, I go so far as to collect information from multiple sources. It's the old joke: take two people and there are three stories: his, hers, and the truth. My way of thinking isn't necessarily truth because it's all built on the foundation of what I think I know, what I've been taught, what I believe, and what I've had the fortune or misfortune to experience. None of that means I'm right. But if I can explain and give overwhelming evidence other people might agree. Prove it through experimentation, and other people will build an industry out of it.

I wish I had th money to establish an open anonymous forum for patients. Doctors would be allowed to read but not to comment. There used to be amazing forums at butyoudontlooksick.com but they've been gone for a while. If such a message forum existed with a viral hit like The Spoon Theory that made people gravitate to the site, I think doctors would be pretty surprised. Oh sure, there would be a lot of mistakes, but that's not what's important. What's important to see is how easily people can compare stories to see if their stories match. Do that publically, and other people whose stories kinda match can compare notes, ask questions, and find out head in this direction or head in that. Someone who is actually experiencing the same thing can suss out whose stories match and whose don't. The marketplace of ideas separates truth from fiction, and lies from reality.

When you're a hammer, everything starts to look like a nail. And the hammer doesn't like being confronted with screws. This is why multiple tools are needed. It's easy to be a screw and have your purpose and surroundings destroyed because a hammer came along and pounded you into the wood. This is exactly what happens in a misdiagnosis, whether it's the patient or the doctor who has made it. it's called patternicity: the ability to see patterns in what appears to be noise. Sometimes there is a pattern there, and we've got it right. Other times there are multiple patterns depending on your perspective. Still other times the pattern creates an illusion. And sometimes it's completely random. Schitzophrenics have an overdeveloped sense of patternicity. When they're in reality, they make amazing mathemiticians and economists. When their brain has gone overboard, they can be a menice to society and themselves.

We all have this potential for glory and madness, depending on the function of our brains, our environment, and what results as an interplay between the two. When it works, it can be an amazing feat of genius. When it doesn't, it's just as radical, only in another direction.

Bravery can be folly and vice versa. It really depends on how we judge the outcome. we can never take bad luck too seriously, because there's no telling that it won't work on the hundreth time. On the same hand, good luck has the same vulnerability. Skill and luck are sometimes indistinugishable. We often don't know ourselves which is which. There's a lot of work that has to happen to find out sometimes.

This blog post was inspired by the comments people have left here, so please share your ideas! Even absurd ones. The only thing I will block is spam and personal attacks. Attack an idea, sure, or even a stereotype. You can even be angry, the world knows I get angry. Just please don't verbally shoot one another!

Legalization vs. Regulation

Ending Prohibition of Drugs does not mean heroin is going to be sold over the counter. Yet most people think that's what's going to happen if we end prohibition. Think about it. We ended the prohibition on alcohol, but that doesn't mean a young kid can walk into a bar an buy a beer. Many states have legalized marijuana but that doesn't mean it's available in your grocery store. And grocery stores have been carrying a more lethal drug than heroine for decades: acetaminophen, known under the brand name Ty----l. If you OD on this drug, you die horribly as your liver dies over the next three days. It's a brutal way to go, and it's responsible for more deaths every year than heroin.

Legalizarion does not mean unregulated. We regulate all drugs and we use all drugs in science and medicine already. We do this through the scheduling of drugs. We could easily reduce the classes from five to two prescription-ready class and less for non-lethal drugs like marijuana and marijuana concentrates. Yes, you can OD on marijuana, but the worst thing that happens is a seizure (also known as "falling out"), the OD itself does not cause death. Our endocrine systems require cannabinoid chemicals to function. This part of the endocrine system is called the endocannabinoid system as a result.

Peter Crist wisely said: "You can recover from an addicion. You cannot recover from a conviction. And admitting you're an addict means you're admitting to being a felon." so true. The only addition I could make is thank the stars for Alchoholics Anonymous and Narcotics Anonymous, and bless the alcoholics/addicts they serve. We woke up from the prohibition on alcohol in 13 years. We've had this crazy "War on Drugs"for 44. The lifting of the prohibition of marijuana is a good start.

The DEA could remain, and simply refocus its efforts: away from prohibition and move to regulation. We have a federal bureau for Alcohol, Tobacco, and Firearms. The FDA could move its doctors to the DEA and focus on Food and Over-The-Counter medication (and imagine the amazing food safety to follow!) No jobs need be lost, and we'd probably see a boon to our economy on a number of fronts (just look at Colorado for an excellent example of regulation of marijuana and they just extended buying hours!), most of all, relief for millions of pain patients, their doctors, and our hospitals who are prosecuted and persecuted excessively under our current system.

Ending prohibition does not mean a free-for-all. Remember, we are far more sophisticated than that, and we solved these problems ages ago. We just need to recognize these facts. Speaking of facts, when the first drug prohibition laws started in 1914, 1.3% of the population were addicts. And if you've been reading, you know that 1.3% of people are addicts today! That number hasn't changed since there were opium dens. Also, it means that 98.7% of people can take drugs just fine and never become addicted. control and regulation hasn't changed those numbers, but it does generate a load of revenue that is currently disappearing into the black market. If you want to improve the world, end the War on Drugs; America's Longest War.

We should not put people in prison for what they put into their bodies. We need to stop prosecuting doctors for doing their job. We should include harm-reduction policies in our laws. Treatment is possible, we know this. We also know relapse is as natural as not wanting to take a blood pressure medication. Ideas and new habits take time to set in!

Therefore, I will keep shouting this from the rooftops as long as necessary.

Law Enforcement Against Prohibition has a number of excellent videos if you want to find out more. Jack Cole's 12-minute talk is amazing— he was a narcotics agent at the beginning of the War on Drugs in 1970.

High Costs of Prohibition

One of the biggest misconceptions about pain control comes from the myth of the addict. Addicts are only a very small percentage of the population, according to many sources, 1.3% of the population. These people wish to escape their reality, because they have difficulty coping with it. Yet 20% of the population, a staggering 25.5 times the number of addicts, have the same problem coping with their reality due to chronic pain. But chronic pain patients are trying to avoid reality, not to separate themselves from responsibility, to be able to be responsible for themselves and their lives. This is just one reason why our current drug prohibition is completely insane. There are many other reasons, a few of which I'll give here.

We only need to look at the number of people employed by hospitals and emergency rooms to see the human cost of drug policy. A little bit of math on the numer of employees per bed in an ER gives a ratio of 14 employees per bed per shift. That's fourteen people to take care of one. When we are incapable of taking care of our most basic bodily functions, a very small number of patients suck up an enormous number of resources. Looking specificly at the cost of chronic pain, the costs of lost productivity and medical care (in 2015 dollars) is an estimated $613 billion to $694 billion, accorting to the National Institutes of Health. This amount, according to the study, represents more than the annual cost of heart disease, diabetes, and cancer combined. Chronic pain is the largest continuous drain on our resources, both medical and economic.

And the reason chronic pain is the largest continuous drain on our economy is because of the behavior of 1.3% of the population, most of whom outgrow their addiction naturally (50% of addicts give up their addiction naturally, without intervention over time). When we include the $41 billion spent on drug prohibition, we're talking about less than one percent of the population costing our economy an average of $674 billion, annually. This is not counting the human costs as a result of crime, violence, and suffering that results from this prohibition.

Can we please admit that our current drug prohibition is absolutely insane? We have for decades now done the same thing over and over, expecting that we can irradicate drug addiction with catastrophic results for people who are not addicts. We are hurting law-abiding citizens in the tens of millions for the behavior of a minute few, half of which get better on their own!

Let's wake up, America. There is no boogieman who lives in chemical substances. No one becomes an addict simply by injesting a drug. Doctor Jeckle and Mister Hyde is a dangerous myth, one we desperately need to dispell. We went to war on drugs, but it has become a war on patients with astronomical costs. We thought we learned our lesson by 1933 with the failure of alcohol prohibition, but the sad truth is we are still delusional fools today.

Come on, America... We're so much better than this. End the War on Patients.

The Case for Mercy

We forget so easily the struggles of our past, and how much time it took us to mature. Time has a dopplar effect. We don't remember every time we had a meal, we don't have to. We just have to remember the important things. How to survive, how to advance and aquire, how to make ourselves and others secure so that we may enjoy life and love. We forget the generations it took and the suffering, and the luck required to be successful. The true story of the past is reduced to history. We leave out the boring bits, we gloss over the pain and the loss, and we focus on the happy ending or the trauma. The former begets motivation to overcome obsticles and reach for a brighter future. The latter begets a cruel system of might makes right, also known as the Laws of Beasts.

I will be the first to admit I have a pidgeon brain. Success is actually not the best teacher. When we're too lucky, we begin to think the magic dance we're doing makes the magic food pellet fall from the sky god. If we can't see the scientist with the food pellet dispenser set to go off at a random interval, we think it's magic. Oh look what a good job I did! No, silly, you were born at the right time to catch a wave of opportunity that you then surfed into the future. that doesn't mean you weren't also lucky to have escpaed the razor sharp rocks below the surface that have claimed others.

We forget we came into this world screaming, and that it took time to learn how to address our own needs. We take for granted the work of previous generations. We forget how long it took us to figure out how to stand on two feet. We forget how many times we skinned our knees learning how to run. We remember how to soothe our wounds. We forget how uncomfortable it was while we healed. We remember that when we put this into our bodies it made us feel better. We remember that when we get a good night's sleep, we wake refreshed. But when we're unable to heal, when we're unable to eat, and we're unable to get a good night's sleep, what happens? We turn into canky babies again.

When living in harsh conditions, one must be harsh to survive. It's school-yard ethics: the bully gets to takesmaller kids lunch money, and people will attach themselves to a bully as a survival mechanism to not be victims themselves. That's a goon squad, and it's co pletely natural and totally inhumane. That's why we train our children out of that behavior. Most of the time.

In times of trauma, our minds switch off and instincts kick in. Your brain goes into hyper-awarness-crisis-mode. Reflexes are sped up, time seems to slow, but only because we're going faster than normal and are able to process more visual stimulii than normal. If we're lucky, there's a hard-wired circuit where we encountered this before and survived. If so, we act seemingly without thinking. That's because our general reflexive thought processes (our awareness of our awareness) is redundant and slow. Second-guessing costs valuable time in a crisis— time which could spell the difference between surviving and dying.

This is why the ability to self-soothe is so important. All children have a fear of the dark at somepoint in their lives. Heck, many adults have it. And that's completely natural, probably permanently hard-wired in our genetic code. That noise you just heard coming from the place you can't see... Was that floor-bords creaking as someone rolls over in bed? Or is that the big scary monster that's coming to eat you? Guess wrong and it's your life. It takes years to learn how to sleep alone, because to our cavemen-child minds we know it's just not safe.

Civilization is a very thin veneer over millenia of animal wiring. And our boogeymen and our need to punish wrong-doers even at sacrifice to ourselves is how life is for most. What animals fight for territory, mating rights, and resources? All of them, down to the microscopic. Reason is the luxury of a safe and fulfilled body. Self-soothing is vital to recovery after a crisis. If you lack those skills, or if you were never taught those skills, or if you are just unable to meet your body's demands, your reasonable mind shuts off and your fight or flight instincts kick in.

And if you are trapped in your suffering, you scream and flail. Flight is no longer possible, so fight kicks in. Animals do this— any vet will tell you that chronic pain in animals often results in aggression. Dementia patients do the same, and why wouldn't they? What's more humane: chaining them up as we do to animals, or easing their distress so they don't harm themselves or others? That's your choice: treat people as intelligent beings capable of being reasonable, or watch them behave like animals and then treat them like animals because you wouldn't be reasonable?

On the Today's Show today the mentioned that 2 million are addicted to pain pills and 500,000 are addicted to heroin. But those number are a drop in the bucket compared to the 63,800,000 who are crippled by chronic pain. For every two addicts we address, we punish fifty-one people in chronic pain. We are destroying ourselves over trying to control a few when the masses are crying out in pain. Do you know how much money we would save every year if we got rid of the stupid assertion that adults are children and cannot be trusted not to touch the poison?

Addicts in open recovery, such as comedian Russel Brand have confessed never once did they think: I musn't do drugs because drugs are illegal! and if we just taught all doormen how to do the sobriety test at the bar, you could direct them to the sobering up area and release them when their safe to drive (the "follow my finger" neurology test is impossible to do when you're drunk, and possible when you're sober, no matter how much of an alcoholic you are). But there's a whole lot of money and very little paperwork in prosecuting drunk drivers. Real criminals are difficult and cost a lot of money and the jail makes the money.

But we will willingly destroy ourselves to punish "evil-doers." Never once realizing that "evil" is completely relative based on tradition, superstition, animal brains, and a planet that can shake us like a cold. It is us who are fragile. we don't understand the world by a long-shot. We're writing laws based on a morality code that is only going to change with time. The laws still live, enforced by a generation who weren't there to experience why we made that decision then, and whether or not it's still applicable now! Times change and what offends grandma and grandpa we're not so uptight about.

Can we not give up this silly crusade called the War on Drugs? Can we take back some of our dignity as adults and show some mercy on people struggling? Pleasure-seeking is not a sin, nor is pain avoiding. We all do things to ease our bodies and our minds, and we have been taught by generations and our own biology to do so. We have 52 people suffering for every two that use the same substance for psychological pain rather than medical pain. Either way it's someone suffering who needs compassion and mercy, not control, gatekeepers, and punishment.

End the Shadow War on Patients.

Opiate-induced Sleepwalking

One reason I'd make a terrible #junkie is that I can't take more than 10mg of methadone 3 times a day. Any junkie will tell you that's a BABY dose. I helped the homeless including driving junkies to the methadone clinic when I volunteered in Seattle, and most methadone clinics give out a syrup containing 250mg of methadone for a once per day dose. Dear god, that would probably kill me. but the reason I can't go higher than 10mg/day is that on any higher dose, even for breakthough pain, I will either experience insomnia or sleepwalking.

The first time I went sleepwalking I left my friends' apartment, took their flashlight, left their apartment building, and sat for 5 minutes, ASLEEP, on 11th Avenue in downtown Seattle (not the safest of places to be a woman asleep on the curb). Then I went back inside (thank god I wasn't locked out) leaving the flashlight downstairs for evidence to myself that I was unconcious of my own actions.

I did this immediately upon falling asleep, apparently, because the lady of the house "thought I had gone out to smoke a cigarette, but [I wasn't] gone long enough... If that doesn't scare you away from misusing your opiates, nothing will. To this day it scares me to live alone, for that and may other reasons. I have a service dog to let me know when a bad migraine is coming, so I can also sleepwalk proof my house before going to bed.

If you watch Mike Birbiglia's first movie about him becoming a stand-up comic, you can see just how dangerous sleepwalking can be. I would sleepwalk and talk even into my teen years, but I grew out of it. Or so I thought.

So yeah... Me? So not a junkie.

Judging a Cover

Doctors fancy themselves judges. Any lawyer would laugh at that, but patients know the truth. Even the most well-intentioned doctor is judge, jury, and sadly far too often, executioners. I can't tell you how many times I almost died due to the neglegence of a doctor. There was the original dismissal of my symptoms of adrenal insufficiency including a full-blown Adrenal Crisis the night before my colonoscopy. There were the cries of, "You're so young!" and "You look so good!" Now my problem is I live in a conservative town, I look much younger than my 41 years, I have tattoos (last one so painful from my neuropathy I quit ink 7 years ago), and I've been on pain pills they just don't prescribe in the Middle West. Hence, I'm castigated as a junkie when I have no history of substance abuse.

What I do have is just enough chemical knowledge to make it seem like I'm a junkie. Doctors think they're the only people who can pronounce fancy names. They can't imagine that a professional writer, nay, a health writer could have a grasp on how to read. Do you remember in kindergarten when they taught you how to pronounce big words by breaking them up into smaller ones? Yeah, unless you have a medical degree you couldn't possibly know how to say dextromethorphan or trinitrotoluline (TNT for you folks at home).

And if you happen to talk fast, that couldn't possibly be because you're able to think fast. No one can think fast without drugs!! Well, I don't take drugs for my ADHD because speed can kill me with my adrenal insufficiency, and it makes my heart race at unsafe levels. I was diagnosed ADHD when I was 18. Took medication for three months, then had to quit. Oh, the ritilin did exactly what it was supposed to: for the first time I could remember more than three things at once. I would have stayed on it if I could. Instead I developed coping skills. Now I can out remember both my parents; dad''s been diagnosed ADHD since he was 45 and my mother takes the Adderall, also called dextroamphetamine.

Did you know oxygen is a drug? Yeah... A drug. The $#!+ we need to breathe and live is a prescription drug if you need a respirator, or if you get it in hospital. But go down to any hardware store and you can buy giant tanks of it, no prescription. It's used in acetyline torches. Did you know that we use sodium to light our streetlights? If your street lights are a nasty pale orange, that's a sodium light, the same stuff that ups your blood pressure. Did you know potasium can kill you if you inject it too quickly into a vein? It's an essential vitamin, but one good dose to the vein and you'll never need vitimins again. Did you know aspirin is made from coal tar? Or that most of our "synthetic" drugs (not really synthetic because coal and coal tar both come from plant matter) come from?

Oh but I'm just a patient... I couldn't actually know something. Having knowledge means I'm a threat. I know when doctos are trying to make $#!+ fly without wings, so I'm a threat. We can't have our almighty doctors threatened with the truth! That might lead to the ethical treatment of patients and having to admit when they've made a mistake!

The HORROR!!!

Ignorance is the bliss of Innocence

I hold no illusions. I am not a stranger to pain nor high-stakes power games of Shakespearian proportion. The truth is brutal and beautiful, sometimes at the same time. But my people, people with disabilities, will understand the knowledge I'm about to lay down. They've lived it, and are living it.

I've been dealing with a lot of ignorance lately and I have been doing everything in my power to forgive them, for they know not what they do. Fourty-eight hours ago, however, I hit my limit. I'm though coddling healthy people because they don't understand. I will gently teach them, and if they don't want to hear it, I will yell it from the rooftops: Ignorance of the law does not mean innocence. Discrimination is Discrimination.

I am not a second-class citizen. I'm a separate but equal citizen, separated from the masses because of my disability. In their ignorance, they have started wringing their hands about how it's exploitation to not pay people with disabilities minimum wage for their work.

Wow. They should really read my book, because that stance shows their absolute ignorance of working while disabled. When I worked at Microsoft, there were all sorts of perks that weren't included in your salary like free cold beverages including fresh milk. A cafeteria that served resturant-level food including daily-delivered sushi, and you could take a break during work hours to play basket ball, video games, et cetera.

I give this example because what the Healthy people don't understand is that many of us need to be underpaid so we don't lose our benefits and can get out of the house for a reason other than medical interventions. That's a huge gift in itself. Additionally we become contributing members of society again, something people in this economy can understand. Having a job you love at any salary is priceless. I know it was to me, I blogged about my experience when it happened. And I took a pay cut for that job, happily.

When you force companies to pay minimum wage, that means your taking a paying job away from some other person with a disability. How is that a good idea? Your noble cause would have a devistating effect in reality. I will not idly by and let you do that to my people. We are not livestock you can slaughter to feed you political agenda.

I will not let the dreams of my people be defered. We ALL have a Constitutional right to pursue Happiness. Ignorance is no defense. This is my Call to Action: #WiseUp and show a little compassion!