"For Whom All Other Options Have Failed..."

Those are seven scary words: "for whom all other options have failed..." but those were the requirements for the Occipital Nerve Stimulator study. I've learned that study is a golden standard among pain doctors.

"Have you tried everything?"

Yes, I've tried everything.

"Have you really tried everything?"

I was in the Occipital Nerve Stimulator Study.

"Oh, crap. You really have tried everything. Sorry, there hasn't been anything new since Lyrica in 2008."^*

That's where I am in pain management. Out beyond the horizon in "we have no idea what the eff to do" land, looking at blank faces that read "our hands are tied on what we could do by insane government regulation, I have a family to feed..."

I'll overlook the fact the DEA is practicing medicine without a license if they would just let me talk to someone face-to-face.

I know a woman with Stage IV stomach cancer who can't get pain medication because of DEA regulation! ARE YOU KIDDING ME?? All because of a little clause that says if you use marijuana, even medicinally (hello? STOMACH cancer???), you are excluded from ALL narcotics programs. Period.


Um... Mr. Jeff Sessions, may I have a word?


Forget me and my pain, Stage IV stomach cancer and you're forcing her to die in agony. What the in the ethical hell has this country become?? This is Cruel & Unusual Punishment by fiat. We HAVE the drugs. They're completely AFFORDABLE. The SOLUTION is right there!!! But because of some moral panic over addiction, we're going to make this innocent, beautiful soul walk that path of pain...

Her life doesn't have to be Hell. Mr. Sessions, how as a Christian can you allow that? Have you no mercy???

God in Heaven, hear us.



(^* As of writing this, that's ten years ago. That's how slow drug development is.)

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?

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.

The System and Dr. Ruan

Growing up in a family of lawyers and politicians, you're raised to understand The System. What most people don't understand is that fiction is dramatic to be exciting and entertaining. The real world is a great deal different. The system takes power, nuance, and a lot of work on your time and your dime. Depending on where you are, the rules are always different, but there are always rules. Be a team player and you just might get somewhere. Screw up, and you'll find just how limiting the System can become. Not all cages have bars you can see. Doesn't mean you're not in a cage. Ask anyone whose lived in a ghetto, they know.

Patience, obedience, and manners are all a part of the dance. When you're not the authority, you better know how to relax and follow their lead. This is the same for police as it is for government bureaucrats as it is for doctors. The problem is, in a situations like that, even normal behavior can be painted as criminal shown in the "right" light. Not everyone knows what's normal and what's not, so if you start throwing big numbers around without any baseline for comparison, people assume it's impressive. Having a frame of reference is vital to know where things really stand.

"The numbers are pretty stunning. A 2012 article in the Annals of Family Medicine noted that the average primary-care physician has about 2,300 patients on his "panel"— that is, the total under his or her care. Worse, it said that each physician would have to "spend 21.7 hours per day to provide all recommended acute, chronic and preventive care for a panel of 2,500 patients." I'm not sure I'd want that doc seeing me at the end of that long a day at the office.

"According to a 2013 survey by the American Academy of Family Physicians, the average member of that group has 93.2 "patient encounters" each week — in an office, hospital or nursing home, on a house call or via an e-visit. That's about 19 patients per day. The family physicians said they spend 34.1 hours in direct patient care each week, or about 22 minutes per encounter, with 2,367 people under each physician's care."
— Washington Post - "How Many Patients Should Your Doctor See Each Day?" April 22, 2014

Now a little math. Multiply 2,000 by once per month visits and that's 24,000 visits per year. Why once a month? Because pain medications are only doled out in once-per-month written prescriptions. Multiply that by three years, and that's 72,000 prescriptions over three years.

So when the news tells me that a pain doctor has written an "alarming" 30,000 prescriptions over three years, and try to paint that as excessive, first I laugh at the lie, and then I get really upset at the System.

This whole case against Dr. Xiulu Ruan and her fellow doctors is a farce. Doctors are expected to be able to diagnose in three minutes, and sometimes less! Do you think a gunshot wound waits for thirty minues for the doctors to interview their patients? The appointment is a formality for the patient. Most doctors are much smarter and faster than that.

When you see that she's also writing far fewer prescriptions than any given general practitioner, then the DEA's stance that that this is a "bad doctor" is just laughable. What's not laughable, however is the truth. The DEA is tearing apart the livelyhood of two doctors, smearing their good names, destroying a tax-paying business, costing a mountain of legal fees, destroying the jobs the doctors entire support staff, and putting all their patients lives on hold and at risk.

"Why?" You ask.

Because drug dealers shoot back. Doctors don't. The burden of defense is on the doctors. That pumps a hell of a lot more money into the System than taxes. All those doctors' possessions have been seized (asset forfiture), and the System is not required to give it back, even if the doctors are found innocent. Where do you think those possessions end up? Oh, some of it gets inventoried, sure, but things disappear too.

Who watches the watchmen? Do you think a uniform magically makes someone invulnerable to human weakness? Why do you think transparency in the System is important? Because the System will happily eat you for breakfast. Limits on Government and the rest of the System protects us from their tyrrany.

Plus, people in the System are pre-approved to go to the press and spread half-truths all day long. They can pat themselves on the back for "catching the bad guys." They look like they're doing their job, when actually it's the doctor's job to report to the DEA and provide the evidence to the System that eventually is used against them. It's really easy to do your job when others are required to do it for you. The DEA has a sweet racket going on. They don't have to do anything except bust law-abiding citizens and all other pain doctors are now terrified to do their job and help patients. That's a win-win in their book.

Pain, left untreated or under-treated can easily grow into chronic pain^*, for reasons not fully understood at this time. Does the DEA care? Not a bit. To them, every patient is a junky and every doctor a dealer and hospitals are cartels. They can force their victims through laws and regulations to dig their own graves.



Welcome to reality.




*PubMed — Can J Anaesth. 2014 Feb;61(2):112-22. doi: 10.1007/s12630-013-0087-4. Epub 2013 Nov 26.
The transition from acute to chronic pain: understanding how different biological systems interact.
Mifflin KA1, Kerr BJ. Centre for Neuroscience, University of Alberta, Edmonton, AB, Canada.

The Hypocracy of Leonhart

It comes as no shock that the DEA is corrupt from the head down. It is no suprise that our country has been compromised by drug cartels and drug money flowing directly into the agency that is supposed to protect us. Ms. Leonhart may say, "all illegal drugs are bad," but she's lying and she knows it. Cocaine doesn't change whether it's used for your root canal or to party. It's the same drug. You cannot on the one hand sanction its use for one group of people and imprison people for its use on the other and not be a hypocrite. Hypocracy is basically written into DEA mandates, and look where all that "War on Drugs" funding got us. It got us DEA agents buying prostitutes from the Acartels with tax-payer money. We have forgotten our own blood-soaked history with alcohol prohibition. It's time to have a more mature converstation than, "Drugs are bad, m'kay?"

The data is clear: drugs are not a problem unless we make them a problem by outlawing them. There were huge 420 celebrations across Colorado. Know how many public smoking citations they handed out? Hundreds. Want to know how many drug-related crimes, drug-related accodents, and drug related driving while intoxicated citations there were? No reported. That's right, not one. All those people high as kites, and nothing bad happened. No children died. No mob started demanding heavier drugs. It was less disruptive than most events and venues that serve alcohol.

Ms. Leonhart is a corrupt fool, leading an agency of corrupt fools, and she's no Doc Holiday. Her corruption knows some bounds. The boundary that comes with her severence check, hallelujah, don't let the door hit you on the way out.

[Source: http://www.nytimes.com/2015/04/22/us/michele-leonhart-top-dea-official-is-expected-to-resign.html]

DEA: LEAVE OUR DOCTORS ALONE!!!

The Shortest Sentences in the Human Language #HAWMC [LATE]

Wait. That's a word in the 'shortest sentence' in the English language category. The shortest sentence in the English language is: No. I can handle wait. Wait is no problem for me. I can even handle wait at Level 10 pain... and believe me, my Level 10 is no joke. What I don't like is wait...wait...wait... Psych! Just kidding! I really meant: Never. That's some uncool $#!+ right there.

And there have even been studies on it... if you let people know what time the next train arrives, they're less anxious. If you let people know how long the drive will take, they're less likely to speed, even if it means they'll be late... in this age of cell phones you can just call can inform your party.

No is just... no. How do you get around that? No. It's a denial, a wall, a deep dark hole... No. You need more letters to create or even insist! No is just an ending. What comes after no? Silence.

Dealing with no is hard. I know. I have hard time with no. I had a mother who would pull out no first, even if it was something I desperately needed. So I learned how to out stubborn her. That has been a boon and a bane in dealing with doctors. Some react just like my mother and I eventually win them over with facts and evidence. Some are like my ex-boyfriend who take no to a level of extreme heights, you need a telescope and a star chart to see them.

"See that second star on the right?"
"Yeah?"
"You can see a flag that says "NO!" just beyond that horizon."
"Oh yeah, now I see it!"

But no is not always defeat. Our path from our birth to death is rarely a straight line! Or at least you hope it's not... it either means your life was very brief, or it means your life was very boring. Both are horrible outcomes! No, when it's followed by helpful or better information is actually a good thing.

Did my father die of a heart attack at sixty? No, he got to a cardiologist and they were able to put stints in, avoiding the heart attack. Were we able to make our flight? No, it got canceled due to weather, but we met this marvelous couple in the lounge while waiting for your next flight. They were going elsewhere, so we never would have crossed paths otherwise! Did you graduate with a chemistry degree? No, I got an English degree, but I combined it with my love of computers and became a technical writer instead of a doctor. I can still practice my craft, even if I'm not employable in the traditional sense. I could feel a lot more useless than this! lol

No can also mean no, not yet. But as I mentioned before, that's just means waiting, and I'm cool with that, as long as there's a payoff. Some say, A bird in the hand is worth two in the bush! And while that may be true, there's also the marshmallow study which shows children who can resist temptation are more successful later in life. And I've seen that in my life on the daily. When I'm able to be patient with others, they relax and are more willing to work with me. Patience is an amazingly powerful skill. I may want things to be Right Now! and Quick Like A Bunny!!! But that doesn't mean everyone else wants it at that speed. Some people just don't move at that speed. Others just prefer to savor life's moments. Still more just can't go that fast, and that's okay. So no can mean, no wait a minute, let me explain.

My apologies for the lateness of this post, I meant to write yesterday, but the muse had not yet arrived. Thank you for being so patient! ^_^

[ted id=553]

#NMAM "Run, Forrest, Run!!!"

Describe the approach you think is best when it's time to move on to a new doctor. The following are times you should leave. 1) When they don't return your phone calls. 2) When you have to do their office work for them. 4) When they diagnose by just looking at you. 4) When they give diagnostic orders opposite of the what test result are. 5) If they accuse you of behavior you know you're not doing. 6) If they refuse to run a simple blood test.* 7) When they lie to you. 8) If they don't stop when you tell them that what they're doing to you hurts. Yes, these are all personal experiences.

I was told that I was drug seeking... for prednisone (laughable in itself). I was told, "Nobody can be that sick!" by the doctor who has been my family's doctor for generations, and knew me before birth. I was told not to make a follow-up appointment on several occasions, with the line, "I'm sorry, we have nothing left for you..." Which really means, "I'm sorry, we have nothing left we're willing to give you..."

*I had a doctor who refused to run a cortisol test on me. If he had done that, I wouldn't have nearly died from an adrenal crisis. And I would have been diagnosed, and put on treatment 3 years earlier. I would have gone through 3 years less of suffering and struggle. I wouldn't have reached any of my miracle cures sooner, but I would have had to endure less in the meantime. Hell, they probably could have made me functional enough to keep working, but because of the combined arrogance and the War on Drugs (read: War on Patients), I ended up disabled and on government assistance.

However, my caveat to number 6 is, don't just go in there and order blood tests every week. That looks like a villain that doctors are told to ignore: "Googleitis: I read it on the internet, so I must have it." If you think you have something, don't go in there with a print out and say, "I have all these symptoms." Not unless you absolutely know you can trust your doctor to believe you. Instead, if you think you have something, first tell your doctor the story of what your day is like. Describe what going through the symptoms is like and how it impacts you. Then you might say something like: "Now, I was doing some research out of curiosity, and I came across this diagnosis that seemed to match. What do you think?"

I've written number 9 before. It's a tough topic, so I don't mind putting it out there more than once. It helps with my healing. With one doctor (a surgeon, go figure...), they almost needed a pair of pliers, he had driven the needle so far into my skull. He assume I was lying to him when I told him it hurt. He'd aimed wrong. He had a live Xray on (not just a snapshot, but a here's-what-you're-doing-right-now-Xray machine), but he misjudged anyway. The needle was supposed to go along the top of my skull, without touching the very sensitive tissue that lines it. He took that needle and drove it into that tender area, and drove so hard, that they almost needed a pair of pliers to get the needle out of my skull.

This doctor was so arrogant, he didn't believe is own senses! He had to push to drive it in. That's no small matter, putting steel into bone. He managed it. He ignored the resistance he was meeting. He ignored what I was telling him. I screamed so loudly, they heard me 3 floors down. That was also the surgeon, under whose care I didn't receive enough anesthesia, and woke up, post surgery, but still on the operating table. I woke up because my chin was burning. My chin was burning because they had infected me with MRSA. The MRSA that almost killed me multiple times. Unfortunately, he was the surgeon assigned to the study, so I had no other choice.

How do you fire a doctor? Just don't make a follow-up appointment. It's that easy. What's not so easy is explaining to your Primary Care Provider (PCP) why you needed to fire that doctor. In my experience, if you can give your PCP any of the reasons listed above, you'll find your provider will agree, "Run, Forrest, run!!!"

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM "The Price is Right"

Today's blogging challenge: "What one thing would you do for the Migraine community if money were no issue." Now here's the thing... you say something like "money is no issue" and my fantasies really jump the chain. I'm talking full-scale, rewriting Federal drug policies fantasies. See, I'm all for protecting the children from the ills of mind-altering chemicals, but I think prohibition, especially prohibition at the scientific level, is just silly. We need to know what these compounds do, and put them to use solving the problems of the world, not setting up forbidden fruit that we then have to wage a war over.

For example, right now there aren't that many medications for chronic nausea. And the medications that are out there aren't very safe! Metolopramide drugs like Reglan, for example, could cause a movement disorder known as Tardive Dyskinesia, a difficult-to-treat form of dyskinesia. That's a disorder resulting in involuntary, repetitive body movements. Yikes! Yet we have another nausea medication, that has no known overdose amount---meaning it's impossible to OD on the stuff---and we keep that one illegal because on paper it says their's no medicinal value. It's safe, effective, 100% natural, and at the federal level, completely illegal.

Then there's another drug that works on serotonin transmitters, that could be an absolute breakthrough molecule in the treatment of migraines, depression, and anxiety was taken out of scientists hands in the lab and deemed "no medical value" when, in fact, the problem was that it was too good and fell into the hands of club kids. It was a knee-jerk reaction during the really hard "War on Drugs" phase, and now a molecule we know works is off-hands, while other just-as-dangerous migraine, depression and anxiety meds are allowed to remain on the market.

And don't even get me started on over-the-counter medications (Robitussin anyone?)... That we're allowed to act like adults with some dangerous chemicals, but not others, is just silly. I'd use my endless supply to bring some long-awaited reason back to the table. I'd woo Big Pharma. I'd have the doctors and nurses on board... we'd fix this chaotic mess and get medicine moving on the right track again, free from pressure by the DEA. I would transform that organization into what it should be, a regulatory body that makes sure these folks aren't selling snake oil, and treatment for those who find themselves on the wrong end of addiction. After that, I'd add the resources to the FDA to better ensure safety standards and ensure drug shortages don't happen. All those guys with guns? You now work for other government agencies that need guys with guns.

What would I do with all that money? I'd change the very fabric of this nation.

I don't dream small at all. ;^)

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

How to get doctors to listen...

I was asked a very important question, over on my tumblr page: How did you ever get someone to take your pain seriously? Pain is one of the most soul-stealing symptoms of a disease. Pain changes how we behave, it changes how we think, it changes how we live our lives, it changes who we are, and who we're allowed to be. However, there are people out there who would use pain pills for things other than pain. And even though addicts are outnumbered by real pain patients at a rate of 9 to 1, even I worry about giving out advice that could be used to abuse the system. But I think I've found a way around that problem, while still helping pain patients get what they need. The key is: Tell your story.

One big way we can set ourselves apart from drug seekers is by telling the story of our symptoms. This is completely backward from everything a doctor will want you to do. Just as they don’t want to feel rushed, they’ll take out being rushed on us, and try to speed up the doctor-patient communication time. DO NOT LET THEM. They will want to make you rush and list off your symptoms like you’re reading out of a manual. But all that does it make it look like we’ve memorized the list from some web site, which is fine if you want antibiotics for strep, but is awful when you need pain medication. Instead, tell your symptoms in the form of a story: “When I wake up in the morning, it feels like this. I’m not able to do this or that, because blah, blah, blah. It’s really embarrassing our in public, because yadda, yadda, yadda. When this happens, it’s like that.” In the story, there are small little details that only doctors and patients know about. Doctors, because they went to school for it, and patients because they’ve actually experienced it. You will know things that no web site can teach you, and in this way, you can show your doctor that you’re pain-avoiding, not drug-seeking.

Try it out, and let me know your results!

Ask me more! I welcome questions at any time. No question is too much! (Though I may edit content to maintain a work-friendly blog.) You can even ask anonymously!

I have pain control!!

This month has been amazing. I have been able to do things that I haven't been able to do since I got sick. I was able to mow the lawn for the first time in ten years. I was able to enjoy a lightning storm for the first time in almost fifteen years. I am no longer a human barometer! I wasn't able to predict this latest round of storms because nothing hurt! My doctors and I have finally found a combination of medications that has me feeling NORMAL again. I'm still in shock. Here's another, "I didn't think this would happen in my lifetime."

We're in the stone age when it comes to pain control. Worse still, we have a "War on Drugs" that casts many helpful medications in a hurtful light. The medication that has given me my freedom back has a bad reputation. But it's a medication with absolutely NO HIGH. I can be on this medication, and it doesn't affect my ability to think or operate heavy machinery. It's methadone, the medication given to heroin addicts, and it works wonderfully on my neuropathic pain. The change has been night and day. I feel like a new person. I'm still in shock, because I can't believe this is real. It's as if my pain is simply gone. There's no side-effects. No fuzzy feelings. No la-la land. Just no pain. IT'S AMAZING.

The only drawback to this medication that I can see is the stigma. And if that's the only drawback, I'll take it! My pain has been under control, and I'm at a very low dose. There's no drowsiness, and the pain control is so complete, I've started doing land-based physical therapy. I was able to exercise for 40 minutes! In the past, at its worst, the pain has been so bad that my physical exercise was restricted to trips to the bathroom. I was stuck on the couch, in pain, for weeks. That was just last year. Now, I'm able to use a stationary bike for 7 solid minutes. Unreal. I'd be a fool to let stigma stop me.

It's not always 100%. I still have breakthrough pain from a number of sources. For the terrible, debilitating, ice-pick pain? I have a medicated lotion that works like a charm. I still have a narcotic medication for the break-through pain, but I haven't had to use it that much at all. The methadone is really doing the trick. That daily, grinding, soul-sapping pain that I lived with every moment, that I had to manage from moment to moment, is gone. I have FREEDOM again. I can make decisions, based on whether or not I want to do them, rather than whether or not it is possible for me to do them. I can use all this time that I've had, sitting on my hands, and actually go out and do things. And I can do these things at the pace of the people around me, instead of cut short all the time, by my body screaming at me.

I went camping. I slept on the ground. Usually I have to specify the type of chair I sit in so that it's comfortable enough for me to sit for more than thirty minutes. Sleeping on the ground?? That's like asking someone to sleep naked, on a bed of broken glass. You'd have to be insane. But I slept through the night, and in the morning, I didn't feel like I'd been run over by a truck, either (which was normal, even sleeping on a mattress). I was able to go sight-seeing, and then I was able to drive us home, which in itself is unreal. Usually the vibrations of the car set my nervous system on fire. If I'm driving, I also get the vibrations through the steering wheel, to one of my hot-zones: my hands. When I lived in Seattle, had a 4-hour drive (behind the wheel) landed me in the ER. I generally don't road trip unless I have to. This time, the travel was enjoyable.

My head is just spinning with all the possibilities. Life has opened up to me. My body still needs time to recover, but if I am steady with my physical therapy, this should happen. With time, I could potentially return to work. I'm practicing by increasing my workload at home, and my house has never been this clean! I have everything organized for the book, and I should be able to start a normal (rather than haphazard) writing schedule again. It has been ten years since I have been able to be this consistently productive. It feels SO good!!! I am able to be responsible like never before. It is such a comfort to my soul.

I want to throw a party... I'M BACK, BABY!!!

But most of all, I get to tell myself: I was right all along. It wasn't that I was lazy, or that I didn't want to work, or that I was afraid, or that I was being unreasonable. It wasn't any ulterior motive at all. It was just that I was in pain. REAL, physical, biological in nature, pain. I wasn't making excuses, or having delusions of illness. I wasn't malingering. It was absolutely real, and the moment we got me the right medication, I got BETTER. And it wasn't me drug-seeking, because the medication that works, has absolutely no high!!

At my party, I'm going to have a big ole serving of crow, for all my haters and non-believers. I'm also going to do the "I told you so" dance. ;^D

Life is sweet again.

Happiness in chronic illness is possible, but essential to that happiness is management of symptoms. If the symptoms are managed, you can learn to live with disease as though it's not there. However, if the symptoms are not managed, then at any moment, without warning, my awareness can be ripped from whatever situation I was dealing with, to the necessity of dealing with a symptom. Disease interrupts anything and everything. It does not care about sleep. It does not care about manners. It does not care about embarrassment. It does not care about safety or responsibility. It does not care. And it, by necessity, makes me not care, too. But it's the disease, not me. It is a world of chaos and vicious whim. Happiness is very difficult to find there. Manage those symptoms, and I am in a different world. The difference is heaven and hell.

The key to walking through hell is: don't stop.

Medical Marijuana

Before we begin, I would like you to picture this. A plant is grown in a greenhouse. Its flower is harvested when it reaches maturity. It is then processed in a lab. It is given to the patient who is then able to lead a more normal life as a result. I'm not talking about medical marijuana, or MMJ. I'm talking about Digitalis, or as it's more commonly known---the foxglove---a flower that we grow and use and give to heart patients as a medication. We have also found use of this flower in science: "It is used as a molecular probe to detect DNA or RNA." (Wikipedia) We have been using plants and animals for our own needs since forever. Willow and birch bark are two of the original sources of aspirin. Novocaine, and all the other medications that end with -caine are a plant derivative. Alcohol happens naturally to fruit and grains in the right conditions. Even birds and monkeys get drunk. And yes, sometimes people use these things for recreation. So please, let's look at medical marijuana as exactly that: MEDICAL.

First, let's explore the science behind it. There is, in the body, a system, which they now call the endocannabinoid system, which works using biochemicals that are the same produced by the marijuana plant. Our bodies produce marijuana-type chemicals as part of their normal function. Marijuana is just an external source for these regularly used, natural human biochemicals.

The endocannabinoid system is a relatively recently discovered neuromodulatory lipid signaling system that is comprised of the cannabinoid receptors, CB1 and CB2, the endogenous arachidonic acid-based endocannabinoids, such as anandamide and 2-AG (2-arachachidonoylglycerol), as well as their biosynthetic and degrading enzymes. These components can be found in various locations throughout the body, such as in the central nervous system (CNS), the gastrointestinal tract, the liver, the pancreas, adipose tissues, immune cells, and skeletal muscles. Although performing a variety of different localized tasks, the system’s general role seems to revolve around maintaining homeostasis through regulating energy storage, nutrient transport, and feeding behavior. Furthermore, as their name implies, endocannabinoids are described as having cannabimimetic effects, in that they roughly mimic the pharmacological effects of cannabis. (P. Siebler, Masters student in Physiology at CU Boulder, "Sleep Physiology", 2011)

Let's put that in English... It's a recently discovered part of the nervous system that is comprised of the cannabinoid (meaning they respond to cannabis-based molecules) receptors, named CB1 and CB2, the the molecules (like vitamins A, E, D, and K) that the body makes itself, such as the molecule anandamide (pronounced AN-an-DE-mide) and 2-AG, as well as the enzymes that the body makes and uses to break these larger molecules apart. These compounds can be found all throughout the human body, such as the central nervous system (the nerves that control how we sense and feel), the gut, the liver, the pancreas, a "loose connective tissue" (the stuff that holds everything together) called adipose, immune cells, and skeletal muscles (how we move). Although the system performs a variety of different tasks at the small, local level, the system's general roll seems to revolve around helping the body maintain a normal state through regulating energy storage, the movement of nutrients through the body, and hunger. Also, as the name implies, endocannadinoids, these naturally occurring hormones that the body makes itself, cause roughly the same effects as experienced when a person takes medical marijuana.

While not a panacea, or all-cure, it's easy to see why medical marijuana is so helpful to so many people. It's one of those very basic biological molecules that the body needs, like a vitamin. This is why scientists now believe that there can be a endocannabanoid deficiency, called CERD, that can be treated with the use of medical marijuana. MMJ works on the central nervous system, so right there it will potentially help with any pain problem or central nervous system dysfunction, like epilepsy. In fact, medical marijuana has been found useful for children with epilepsy: THC effected reduced spasticity, improved dystonia, increased initiative (with low dose), increased interest in the surroundings, and anticonvulsive action. Or, in English, medical marijuana (in concentrated THC oil form) reduced muscle spasms, improved a medical condition known as dystonia (a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures), increased spontaneous personal activity (with low dose), increased interest in the surroundings, and stopped convulsions (a medical condition where body muscles contract and relax rapidly and repeatedly, resulting in an uncontrolled shaking of the body).

In fact, in Israel, they are still recruiting for their clinical trial for the use of MMJ on PTSD. Their clinical trial is in Phase IV: If the drug successfully passes through Phases I, II, and III, it will usually be approved by the national regulatory authority for use in the general population. (Wikipedia) Israel has given governmental support to the use of THC for the treatment of PTSD, and other conditions.

Israel is one of the first countries to have permitted the use of medical marijuana. Tel Aviv’s cannabis clinics have been open for some time on an experimental basis, with government support.

They offer treatment for cancer, multiple sclerosis, HIV, colitis and other ailments. Recently too, Israel’s first-ever hospital to offer cannabis as a treatment, Sheba Medical Center in Tel Hashomer, started its pilot program. There patients obtain the necessary government permit, according to a strict protocol that the hospital developed, and then are provided with cannabis. (Medical cannabis in Israel: Revolution or evolution?)

But let's hear from an actual patient:

I lived in Colorado where it was legal and had a doctor that believed in its aid for fibromyalgia and migraines. I went through all of the legal channels of the state and used it for a while until we moved to Texas. I can say that it did really help me with the pain of migraines and the tension that comes along with them. MMJ is available in many strains which are directed for different illnesses, such as one that makes you hungry. My son uses this strain often for his Crohn's disease. He is able to keep some weight on this way. Another can give you energy to aid in helping us get off of that couch and clean the house.

As for the methods of using, there are many. I found that the Marinol (dronabinol) pills that are available by prescription did not work for me at all. The dispensaries can make up a capsule using the keef and it works good for someone who needs to relax and sleep. It takes awhile to work since you have to digest it. I used brownies at times, which is a very pleasant way to ingest the drug. I hate the smell and the taste it brings when you smoke it, but it is really the most efficient way for me to use it. I found that a water pipe (bong) was the least insulting for me. When my migraines are at their worst and I can't open my eyes or get out of bed, I could take 2 puffs and I could be up and around within the hour, or sleeping for a few hours if that was my choice.

I believe MMJ is a great choice for some people and should be made available to chronically ill patients, no matter state they live in. I am not oblivious to the problems that can come with marijuana, but I believe this is better for our bodies than some of the prescription medications that we are given. You cannot overdose on this plant. It has proven to be a Godsend for my son and brother-in-law who suffer with Crohn's disease. I wish it was legal in Texas; if so I would use it again. I struggled with using it at first because I am a Christian, but when illness takes over your life, some of our ideals can be questioned and maybe changed. Our eyes are opened to new ways of thinking and our ability for compassion and empathy grows.

Thanks for listening.

Finally, does it have side-effects? Sure. All drugs do. But are these side-effects actually dangerous? One study on driving statistics shows that stoned drivers are safer drivers:

Now, pro-legalization backers have yet another point in their favor: According to a new study from the University of Colorado-Denver, the 16 states that have legalized medical marijuana have seen an average 9 percent drop in traffic deaths since their medical marijuana laws took effect. The study analyzed data from 1990 through 2009.

“We went into our research expecting the opposite effect,” says study co-author Daniel Rees, a professor of economics at the University of Colorado-Denver. “We thought medical marijuana legalization would increase traffic fatalities. We were stunned by the results.”

When it comes to traffic safety, can marijuana really save lives?

By contrast, motorists who’ve puffed pot “drive slower, are less likely to take risks, and are more likely to recognize when they’re impaired and decide not to drive,” he says.

Additionally, both Spiritual Leaders and Law Enforcement are beginning to speak up in favor of legalization of marijuana.





If you have the courage to share, what are your thoughts?

Clinical endocannabinoid deficiency (CECD)

PubMed folks... it doesn't get much more reputable than that! National Institutes of Health... CONCLUSION: Migraine, fibromyalgia, IBS and related conditions display common clinical, biochemical and pathophysiological patterns that suggest an underlying clinical endocannabinoid deficiency that may be suitably treated with cannabinoid medicines. (That's medical marijuana for you folks at home.) http://www.ncbi.nlm.nih.gov/pubmed/18404144

Why dwell on failure?

"I've set my teeth," is an old family saying meaning: to decide with amazing stubbornness. I may get knocked down. I may wail and despair for a moment or two. Then I set my teeth, figure out what's next, and get on with it. I refuse to spend my life feeling sorry for myself. It gets me nowhere. Yeah, it's bad. But I've gotten over that. It's old news. It was terrifying at first. Nowadays, the story is boring. I've told it a million times. Yes, I have a rare and complicated condition that makes living very tricky. But, I'm living aren't I? I can still contribute to the world in a meaningful way. I may accomplish that in a completely unorthodox way, but there is honor in being a trailblazer. This is certainly not what I thought I'd grow up to be. But what it has turned out to be, I'm making the best of.

We're taught in school that getting the right answer is the all important thing. The kid that fails is the dummy, the slacker, the good-for-nothing. There's a right way and a wrong way and the wrong way is to avoided at all costs. But that's not how the real world works. In the real world, often there isn't a right answer. In the real world, sometimes failure is the best thing that can happen. In real world stories, they all run essentially the same way: "I thought this one thing was going to happen, then something completely different happened, and it all turned out like this."

I thought I was going to have my career, get married, have kids, deal with the problems of parent teacher associations, deal with other soccer moms, get divorced, and figure out how to be an awesome single-parent household. Maybe getting remarried later down the line when the kids are older. That seemed probable to me. Getting disabled at such a young age as to be considered "Retired" by the Social Security Administration (and having the body of a retired person to match)... No... I never did think of that being in the cards. Who would?? I had dealt with a 3 year knee injury as a teen. I was no stranger to chronic health issues. But I figured every problem had a solution, right? No... there are still plenty of mysteries out there. We know oh, so very little.

These days, I've learned to linger on the failures just long enough to figure out what went wrong. I take responsibility for my part, but I don't beat myself up about it. Failure is usually memorable enough without additional self-abuse. I figure out the past, and move on. Sometimes I need a rest, so I can find a new approach for the future, and then go again. If I'm set on my goal, I try to exhaust all available avenues, and make new ones if I have to. Time will also present opportunities that didn't exist before. And I don't have to have faith that it will all work out, because that's not the point. The point is doing the best with what we've got.

As children, we have dreams. Then, as we learn, we see how our dreams were unrealistic, born of ignorance, and need some fine-tuning if we actually want to make them come true. This happens time and time again. We think one thing, then we test it against reality. The outcome may be a total surprise, or it may be what we expected. Most of the time, it's a mix of both. We take this new information, we think new thoughts, and then we test those against reality... and so on. The right answer isn't what's important. Knowing what to do when we get things wrong is.

However, we don't teach what to do when things go wrong in our schools. We say: study, memorize. If you're wrong, you're a failure and need to be held back until you can get it right. But in the real world, sometimes that's impossible. I mean, yes, you can study your little heart out and memorize all sorts of things. But sometimes, we're in an area where there's little study and we don't know what's right from what's wrong. Sometimes, we're in a situation where there is no right answer. And sometimes, the answer doesn't matter so long as it works.

I set down certain principles for myself: I must do my undertaking legally and honorably, because I like being able to sleep at night at look at myself in the eye in the mirror. After that? It doesn't really matter. It may take a long time. It may take multiple efforts. It may take an unorthodox route. (Can you imagine having your holistic doctor calling the ambulance to take you to the western hospital? That was my first clue...) But this isn't for a film crew. I'm not on a reality TV show. I'm just a gal living my life. That's messy sometimes. This isn't about perfect, so it's not about failure either. No one is handing out a report card at the end of my life.

What matters is, after my principles are met, am I okay with how I'm handling my life? Do I really need to be doing what I'm doing? Do I need to be doing it in the way I'm doing it? How does it matter to me? I'm the one who has to suffer the consequences, so these decisions are my responsibility. And yeah, I'm willing to bite the bullet that sometimes, I'm going to screw up, things are going to go wrong, or the unexpected will happen. That's life! There is no deserving or not deserving in there. It's only in story books that wizards appear to tell you you're the chosen one and here's your life's path. In the real world, most people make their life path by just setting off in a direction.

So if it's not about right and wrong answers, but results... And if it's also not about deserving or not deserving, but getting the job done... What is it I want of my life, that I think is attainable? Let's go for that. Is it going to be scary? Absolutely! Are there going to be hard times? Like we can't imagine. Are we going to encounter failure? For sure. But all journeys have these things. You'll have that on a job this size. Every great success has a heap of mistakes in its past. So why dwell on failure?

Opioid Narcotics!!! Why have you forsaken me?!?!?

I can't take narcotics anymore, and it's not for all the reasons we see in the media. Here I thought it was just a matter of communication and proving myself a model, responsible patient. I could get the narcotics, return to work and get on with my life. The best laid plans of mice and men often go wrong. I got the communication down. I proved myself a model citizen. I got the extended release morphine pills.... and they're worthless!! I can't be on a medication that makes me feel like I have the flu if I decided to sleep in on a Saturday morning.

The problem is if I don't take it at the same time every day---that means weekends, holidays, days with the flu, zombie apocalypse, it doesn't matter... If I don't take the medication at the same time every day, I get withdrawals. I'm on a baby dose compared to what I took back in the day for my migraines. I used to be able to go a few days before I started getting withdrawal symptoms. Not anymore. Now it's hours. If I get food poisoning, stomach flu or a bad migraine where I can't keep a pill in my system, I'm screwed. I'm trying to make my body more reliable. Not less reliable. So now, the payoff is not worth the price. This sucks!!! I refuse to start my mornings shivering in cold sweats. I remember now why I took myself off these damn things as soon as we had fixed the migraines.

It's ironic to me that doctors would keep such a safeguard on opioids. Right now, everyone acts like they're this siren's song, that once you taste of the forbidden fruit, you'll never want to return to the shores of reality... Dear lord, opioids are not that wonderful!!! They don't imbue me with a sense of community and family. They don't fill me with a feeling of purpose. They don't give me a sense of self-esteem. They're a tool that allows me greater access to my body so I can achieve those other things. And unfortunately for me, they're a lousy tool at that.

Last night I dreamt that I was running my own little cafe/bakery. I was dealing with customers, shipping and stocking, arranging the little cupcake treats in the display case. It's an old childhood dream of mine that I sometimes actually dream about. All mundane. And wonderful. Because it's with none of the thoughts that I normally have to have to get through a day. When I dream, I always dream of a not-sick me... a not-in-pain me... a me that isn't suddenly surprised by physical limitations or symptoms. In the dream, when I want to do something, I simply do it.

I woke up to a body that was not my own---it belonged to the symptoms. There was no deciding what to do with my morning. It had already decided for me. I was going to have muscle spasms in my throat. I was going to alternate between feeling like I'm starving and feeling like I wanted to vomit. I would go from boiling hot to freezing cold and back again in moments. I was going to shake. I was going to be irritable and self-centered. I was going to be miserable, until I'd swallowed the right things, did the right stretches, took a shower and all the other things my body demanded, first. I am not going to wake up like this ever again if I can help it.

I may never get back to a place of wellness again. My life might always be complicated health-wise. I'm strong. I can take it. But I'm not about to be making a situation worse. I'm no fool. And it's plain enough that for me, at least, opioid narcotics are not the answer. Not at this time. Not for these reasons. I simply have to find another way. I have to wait for the science to evolve, a new drug or therapy developed, something... I'm going to go back to the pain clinic and let them know that I don't want opioids.


Back to the drawing board.


Edited to add:
It's absolutely the narcotics. If I try to sleep in to rest, my body turns into feeling like it's on the surface of Venus and on the continent of Antarctica, all at the same time. The second these damn kidney stones are out, I'm off these things. Done.

Added March 6, 2012
Spoke with my GP and we're going to change around how I just my medication. The Ultram is going to be for break-through pain, instead of all day, and I'm going to see if switching that behavior and keeping the extended release morphine cuts down on the withdrawal. It is helping, so he wants me to try this. Neither of us wants me to go any higher, so I can try staying off the night time dose. However, if it's still a problem, I can come back in and we can discuss things further.

Management of symptoms = Quantity of life

Have you ever tried to stop yourself from coughing? It's really difficult. As a symptom, a cough is very urgent, very demanding, very insistent. You're going to cough eventually. It's just a matter of when. Try not to cough for too long and the gag reflex will kick in. Then it's vomiting and coughing. The body will have it's way. Why do I bring this up? Because I want to remind the people who don't have a chronic illness that you *do* know a taste of what it's like to walk in our shoes.

Imagine those symptoms dragging on... and on... and on... Like that lingering cough after a chest cold that just won't go away. Only instead of just the cough, it's the whole cold dragging on. No amount of willpower will make the symptoms go away. Try to force them back and they push back even harder than before. Get burned often enough and eventually, you learn. Something are just-out-of-bounds now. Oh you may be able to indulge every once in a little while, push past the safety zone a bit. But the costs are high, and that's a reminder that your limits are still there. You count your lucky stars for the things that you still can do.

In a situation like that, it's natural to get frustrated. It's natural to become impatient. It's natural to be fed up. It's natural to want to turn our face to the sky and ask, "Why me?!" It's natural to be frightened of what the future holds. I don't have a feeling of safety in my own body. There's always the thought that things are going to change, and not for better. It's happened before, it can happen again. Flares erupt. Bad days are bed days. It's natural to feel at the mercy of invisible, mysterious forces.

It's natural to not want to be alone. I don't trust my body to function. I don't trust my ability to take care of myself. Why? Because I have had things happen to me that were bad enough that I vowed, "Never again." I've been too close to the edge---where if I hadn't've been lucky, I could easily have been dead. It's just safer having someone else around in case of emergencies. In those times another person is a lifeline. In quiet times, at the very least they brings peace of mind.

But what I dream of, when I dare to dream, is a world in which I can manage my symptoms in private and just get on with my life. After that, all other things would be possible: a self-supporting income, expressing myself artistically, participating in life again. A world where I can take care of myself and regain my adult dignity. A world in which I can build towards my future. A world where I can contribute more than just words to my brothers and sisters out there. They're good words, but I know I'm capable of more. This isn't just a world where I have a better quality of life. I'm talking about a world where I have more hours of the day where I am useful---a greater quantity of life.

I actually had a perfect doctor's visit...

It was amazing. It didn't start off easy. He was suspicious, and I waas trying my best to be open and honest without flinching... I really felt under the microscope. But I was *supposed* to be under the microscope. I was asking for narcotics. Yes, that's right. I had my best doctors visit while searching for pain medication. Yeah, I was surprised too. Like, at the end of the visit, he was willing to go out on a limb for me and make a serious recommendation to my GP. See, he admitted to me that because of my current medication list, he can't treat me. It's just a rule. But we were able to get to a place of mutual respect and understanding where he wasn't just telling me "No." He was telling me no and offering me further options for success. That's a win in my book.

How did it happen? I did exactly as Elizabeth Mizioch-Crawford taught me. I booked an afternoon appointment, close to the end of the day. I took my time. I owned my space and I told my story. He was very polite (almost following my script written in my fantasy!) in his questioning. I told him honestly, giving him all my dirty laundry and everything. And I told it in the form of a story. I told it to him as if I were walking him through the events themselves.

AND IT WORKED!

I have never been this successful this quickly with a doctor before. Oh, sure, I've run into great doctors who gave me the benefit of a doubt, and they were WONDERFUL. But never have I turned a "no" into "possible yes" before. I amazed myself. It was really, really scary at times... being me. Being that real. Being that open and honest. But because of that, and because I told it as a story, by Jove, it worked.

I am truly, truly amazed.

Articles that restore my faith in humanity...

I am often faced with fear of repercussion for speaking my mind, here or anywhere else. It's easy to judge. It's easy to follow the party line. It's safer. It's the nail that stands up that gets hammered down. A quick Google search by any one of my doctors, and I could quickly be seen as a "problem patient" before the word go. I could easily be branded a rabble-rouser... a trouble-maker. Discrimination is rampant and has very real consequences on my access to care, let alone the quality of that care. But when others speak out too, I take heart. I'm not the only one standing up and pointing out the emperor has no clothes. Here are some choice articles from doctors and law enforcement about how prohibition is harming us all.

From, Legalizing marijuana: Police officers speak out:

[Once] again, the inbox contained a much greater number of pro-legalization comments than those supporting continued prohibition. Here’s what I got from MacKenzie Allen, a retired King County (Wash.) sheriff’s deputy who was also formerly with Los Angeles Sheriff’s Office.

“I think the first thing with which we all must come to grips is the fact that drug use can never, will never be done away with. Humans have been intoxicating themselves (as have some lower orders of animals) throughout history. We will never “arrest” our way out of this. The drug problem is a health and education issue, no less so than alcohol and tobacco. We’ve been fighting the “War on Drugs” for more than 40 years. It has cost a trillion dollars and thousands of terminated and/or ruined lives with nothing to show for it but more drugs, cheaper drugs, higher quality drugs, more corruption and infinitely more violence. We need to legalize, regulate and strictly control all drugs. Continuing on our present course is insanity.”

From the first part in a series, Tales From the Trenches in the War on Pain, comes this strong supporter of pain relief:

Although I practice child, adolescent, adult, and forensic neuropsychiatry, the majority of my clinical practice is in the field of pain management, and I am a strong supporter of using opioids for the treatment of chronic noncancer pain. I have come to this position after approximately 11 years of face-to-face patient interaction, along with ongoing intensive review of the medical and scientific literature dealing with opioids, and the other forms of analgesic medication, as well as the neuroscience behind chronic pain disorders.

For several years now, and especially over the past several months, there has been an ongoing barrage of news media attention focusing on the fact that overdose deaths due to prescription opioids have reached “dangerous” or “alarming” levels of epidemic proportions. In response to these statistics has come an almost mob-like crusade to track down and punish incompetent, unethical, “pill mill” physicians and their practices, which is justified and one would think this could be easily attainable. Inexplicably, these objectives do not seem to be that easy to accomplish. Why?

At the same time, there also seems to be a push to punish and/or eliminate the pain physician who by some mysterious standard is considered to be over-prescribing pain medications, and/or prescribing medications in “extraordinary” or inconceivable combinations. Of course, these assertions fly in the face of science, and the experiences of the untold myriad of patients who literally have new, functional lives, less troubled by the specter of chronic debilitating pain. These patients still have pain and they always will suffer from it; however, with the right combination of medications — including and especially opioid medications — they once more can experience lives that contain a modicum of tranquility.

As stated above, I am a neuropsychiatrist. I am certain that I see great medical benefits bestowed upon the vast majority of my patients with chronic pain who are prescribed opioid analgesics. They and their families tell me that this is so, and I believe with an objective eye that I see the benefits as well.

From Chronic Pain in America is a National Disgrace, we learn that:

“Federal and state drug abuse prevention laws, regulations, and enforcement practices have been considered impediments to effective pain management….” Among other barriers, they say “Twenty-nine percent of primary care physicians and 16 percent of pain specialists report they prescribe opioids less often than they think appropriate because of concerns about regulatory repercussions.”

The report observes that, “Ironically, while many people with pain have difficulty obtaining opioid medications, nonmedical users appear to obtain them far too easily.” However, the panel also states in italics for emphasis that “the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others.”

(Emphasis mine.)

And one of the most hopeful pieces of information I've seen, from Myth-Representations of Opioids & Their Risks is:

Forest Tennant, MD, has assembled an extensive array of documented cases in patients with chronic pain, ranging in age from 30 to 83 years, who have responded well to and thrived on opioid analgesic therapy for from 10 to 35 years. He observed relatively few complications of the therapy, and those were easily managed.

(Emphasis mine.)

Here we have officials with good standing in the community who are laying that at risk to stand up for what they see is right. That warms my heart to no end. They have so much more to lose than I do. In this video from Freedom Watch, and the first article linked here, we learn that there are professional law enforcement individuals losing their livelihood because they said something in favor of legalization.



There are doctors being pushed out of their practice. There are patients who are suffering. There are non-violent citizens made criminals because of putting something in their body. There are people of good standing being marginalized for speaking out. But there are those still willing to stand, still willing to say, "This is wrong..."

I thank them for it.