My War

I have been wrestling my Shadow, and I lose frequently. My pain is a monster. You cannot see it. I wish you could. It has teeth that chew on my head, claws that dig into my hands and feet, and a tail that lashes my body. I look and frequently can behave like there is no battle going on. I am a veteran of this war. But sometimes I am overwhelmed. The monster has me beat. And I try to do my beat to get by, but I know I am vulnerable. I know the pain is crippling me and I'm just trying to get home.

Now if someone reproaches me while I'm losing to a monster, I can become a monster myself. Flight isn't possible, so fight kicks in. My Shadow can take over at this point. My will is so weak from the struggle, my normal, rational self slips. I don't like it. I don't want what's going to happen next to happen. But it happens anyway: I get lippy. I get loud. I curse like the sailor my parents raised me to be (nod to the U.S. Navy). I fight back. Because I have not survived this long by rolling over and giving up.

I've lost count of how many times I: "should have been in a coma," "should not have been able to be up and walking around," "should have been dead." I am a warrior. And this war does not end. This is not Post Traumatic Stress Disorder. This is Current Trauma Stress Disorder. Don't be fooled by my smile. When I'm not smiling, please give me space. Otherwise I will snap at you, and it's not pretty.

You do not know the battles I have had to fight to get what should have rightfully been mine from the beginning. Not business battles, though I've have my fair share of economic strife. Not traffic battles that people needlessly wage on the roads each day (never thinking a car is a deadly weapon, by the way). Not career battles, though I myself still long to be in that fight. I battle with my pain. I battle my nerves that fire of random sensations at random moments. I battle chronic nausea, gastropharesis, and random choking for no reason. I battle migraines that would end you, as they ended my full-time career. This war never stops.

Some days are better than others. Even the beast sleeps sometimes. But I have to take a martini-glass-full of medications each day to get even the tiniest respite. On a scale of 1 to 10, I don't count any pain below a 5. If it's only 5, it's time to take care of all the chores I've been neglecting and run errands while I can. But I have to be very careful not to wake the beast, so I cannot do too much. These days come maybe 2-3 times per month right now. With more medication, I may be able to get it up to 4, or (Heavens, please!) 5 times per week. But that's another battle I'm fighting.

I don't get to live life like most people. My invisible monster makes it difficult to explain my situation to others. I make chronic pain look awesome. And why shouldnt I take advantage of the luck I have left? Yeah, there's a downside: people don't believe I'm as sick as I say. But what's my other option? Sitting in a wheelchair when I can very well walk myself? That's lying and manipulation. I don't brook with that. I will not beg for sympathy when I don't need it. And when I do, it's only because I'm in crisis.

That's why it's not PTSD for me, it's CTSD. This is real. This is now. I'm more amazing than you know.

Political Rant: Fear Mongering

I have to speak up. The fear mongering in this country is out of control. The Paris Attacks didn't even happen on our soil, and yet we are talking about slamming the door on people in need out of fear of what might happen. We are ignoring the plight of people fleeing brutality and war in an attempt to firewall ourselves off from terrorisism, when we the terrorism in this case was HOMEGROWN. Have we forgotten Waco, Texas that quickily? Or what about Sandyhook, Connecticut? This is the same stupid fearmongering that has us more worried about the ONE addict, when ther are over 100 people suffering in chronic pain PER ADDICT. The unsubstantiated boogyman under our bed frightens us more than the very REAL problem of suffering we see every day. We do nothing sensible about the real problems, and we lose our head over spooky possibilities. And it's destroying this country.

Most people get behind the wheel of a car every day, multiple times a day, never thinking that we are operating a deadly weapon. We require no background checks for these weapons, no psychological exams. We advertize their sale on TV. Nobody thinks twice about it. Yet a car can kill you just as dead as a gun. We tell people who are bullied to speak out, never thinking, "Hey... What happens when there's no grown-up around?" As someone who was bullied as a child, I'll tell you what happens: you get it twice as bad after you've informed a teacher than if you kept your mouth shut. And the bullies at school weren't nearly as bad as the bullies I had to face in my own family every summer break. School was a vacation from violence for me.

Now I'm living in a country I don't recognize. I read about this type of country in school, and the book was 1984. Big Brother is alive and well in Trapwire, in the local traffic and people cameras, and even in the fat-shaming on the TV, even though any look at the numbers will tell us there are more unhealthy skinny people than there are unhealthy fat people (thank you, Science Friday on NPR). We are punishing people for stupid reasons, all to attain some dreamlike society where no one does any wrong, ever. AND IT'S JUST NOT POSSIBLE.

Our politicians and police keep saying, "We need more power to keep you safe!" Can you keep me safe from my own body? Can you keep me safe from the arrogance of a respected surgeon who let me wake up on the operating table and infected me with MRSA? Because those are the things that have nearly killed me. Can you keep my uncle safe from the cholesterol drug that paralyzed him? I still see the ads for it on TV...

LIFE IS DANGEROUS! We all die of something. And we are letting our fears cripple our lives. This must stop. But as a good scholar of history I know that we will make stupid decisions like locking up Japanese-Americans just because we know who they are and ignoring all the German-Americans because they're white and European looking. We wanted to shut out German-Jews because we feared the saboteurs that might try and sneek in amongst their ranks! How many more died in the Holocaust over our fears?

There is a new holocaust going on. The Kurds have already found the mass graves full of women and children. Yet we'd rather believe the monsters are made over there than admit that they live amongst us right now. We'd rather let hundreds of millions of pain patients suffer and live in torture then deal with the minascule few who use drugs to escape from emotional pain, despite the fact that 50% grow out of their addiction with no intervention whatsoever,, according to the DEA.

Politicians talk big, saying they will keep us safe. But when have you actually seen a mass-murderer stopped before a shot was fired or a bomb exploded? NEVER. We were only able to pacify the Germans and Japanese through occupying those countries for FIFTY YEARS. It takes a generation or two to change people's warmongering ways, but we've lost the stomach for that, wanting quick solutions and fast results. We focus on the small problems like terrorism forgetting that two hurricanes (Katrina and Sandy) did more damage and cost more in economics, and human lives lost and disrupted, than their suicide bombings could ever do.

We are insane in this country. It needs to stop. Reasonable voices and facts are being drowned out by fear and hate. We ignore pain and suffering, then pat ourselves on the back for a job well done. It shames me that we speak of freedom and liberty. We are such liars. This is not the United States of America I was taught about in school. I don't know where She is. We need to return to Her, and I don't know how.

Together, we might be able to. But it's going to take courage-- courage that I don't know we have-- to start doing right again. God(s) help us.

Applying for Social Security #Disability

I have been doing Social Security cases since I applied for Social Security myself 14 years ago at the tender age of 29. For the first 12 years, my success rare was 100%, and no one ever needed to go to trial. Times have changed since then.

I tweeted last year that the Disability fund was going to go bankrupt in 2016. Thankfully, Congress fixed that, but at the expense of our debt. There's no other way right now. As a side-effect, however, there's still terrible news. People who used to be considered disabled (quadriplegics, for example) are being denied disability and thrown off the disability rolls. I have 3 clients right now for whom that is the case.

It’s a terrifying time to be disabled in this country. That’s why I wrote my book, Chin Up! 50 Ways to Make Money While Disabled. People don’t understand that thigs like the ABLE act is only if you were disabled as a child. Even though I was disabled so young they consider me retired, labels are a big deal to government programs. I thank my lucky stars ever day for my writing career prior to when I got sick. As Ben Carson and Hillary Clinton are learning, words are slippery and the pen is mightier than the sword. (Which, by extension means Twitter and Facebook are more powerful than the TV news).

The point is, no one gets rich on government cheeze. Oh, they’ll tell you about fraud cases and widely publicize it, but I can guarantee I make less than 25% of what I could make if I were able to work full time. When I can’t work, I’m poor. When I can, I’m okay. Kicking me off SSDI isn’t necessary to motivate me. I still work today, though only part time. My disease is a full-time job that no one would want. But damned if I can’t quit being disabled like I can quit a job.

Obama exploded the disability rolls from 9 million to over 15 million at the peak. And people wonder why people in wheelchairs are being thrown off and no one can get on disability. We’re broke folls! The gravy train is over, and real, legitimate cases are being thrown out with the bathwater (pardon for mixing my metaphors). A lawyer I know in Phoenix won’t even take a disability case if the applicant is under 50 years old.

Times are hard, and they get hardest for people at the fringes first. Here’s how to prepare for your SSDI/SSI application:

1. If you can apply online, ssa.gov has an easy application process. If you need to apply on paper, you can call and ask for the forms to be mailed to you, or you can pick some up at your local Social Security office.
2. Gather all your medical information, make xerox copies. ALWAYS KEEP YOUR ORIGINALS. You can send/take in your paperwork with your application. This can help you to avoid an appeal.
3. If you need assistance with the initial application, many disability advocates can do this for FREE. You can never be charged money for your initial application, otherwise it can be considered government fraud.
4. If you do have to appeal, you don’t need a lawyer to file (this is what I do for my day job). Lawyers are only required if the appeal goes to court. You CAN be charged money at this stage, but it won’t come out of your pocket. The Social Security Administration pays for you.
5. If you require a lawyer, a lawyer from ANY STATE will do, since Social Security Disability is a federal program. (This is not true for state disability.)
6. You can appeal as many times as you want. You can also go to court as many times as you want, as long as there are new circumstances (you got worse, you got something new, etc.)

If this is too overwhelming for any reason, find a Social Worker in your area. They can help guide you through the process. DO NOT trust what the workers at Social Security Offices say. Many times they aren’t current on the laws. They’re bureaucrats after all.

What You Can Expect Once Approved
If you were disabled before 18 years old

You are in a special category.

You will be placed on SSDI and SSI because you havent been able to pay into the Social Security Trust fund, not being old enough to work full time, since it's expected you did school full time (if you could attend school, that is). You will have access to benifits stipulated in the ABLE Act (for more information, check out this list of 10 Things to Know About ABLE Act).

Your first check will be dated according to when the federal government considers you "Officially" Disabled, minus five months. If there was a delay from when you were first disabled to when you were approved (sometimes the process can take years to be approved) you will receive a large sum payment. It is every monthly payment you would have received if you had been recognized as disabled when you actually were disabled (minus five months).

Approval for Medicare benefits runs on a different clock. More on Medicare to come in a later post.

If you are approved between the ages of 18 and 29

Again, you are in a special category.

You may have worked as an adult at this point, but if disabled at this age, you haven't had enough time to pay into your Social Security Trust Fund. As a result, there is a special formula the Social Security Administration used to calculate your SSDI payment, based on your income for the last year you were employed. You will receive a larger SSDI check as a result, and you may not qualify for SSI as a result.

The rules for your first check are the same as above.

If you are approved between the ages of 30 and 61 (or there abouts)

You will receive SSDI based on what you have paid into your Social Security Trust Fund. If that amount is too small (i.e., you're WAY below the poverty line), you will also qualify for SSI.

Your first check follows the same rules as in the first section.

If you are approved at the age of 62 and up

Because you are the age of retirement, you will be pushed into retirement and may not revieve approval for SSDI. If this happens, APPEAL! You can receive both your Social Security retirement check and a disability check if you can show your disability is severe enough. This is because most retirees are healthy for a while before old age itself becomes crippling.

Your first check(s) will still follow the rules as mentioned in the first section.




Feel free to ask me any questions. You can reach me through Twitter at @MakeThisLookAwe or @DsabldMnyMakrs

Life is a Double-Edged Sword

Now that I'm the age equivalent of the answer to "life, the Universe, and everything," I'm hoping to grow in wisdom. For my birthday, I "celebrated" with a double dose of ER visits. It wasn't my best birthday, but then I've had worse too. I've been on this earth long enough to have a number of educated complaints, but I can also have a sense of humor about it too. That's the way it is with law, which a lot of people don't realize. Words are a double-edged sword. They can cut, and they can heal. Medicine is a double-edged sword: it can hurt or or can harm. Information too: your data can be used to redeem you, and it can be used to bury you. It just depends on which side of the sword you're on: the cutting edge, or the flat of the blade.

Stories are like that. Who you're cheering for really agrees to the side with whom you most identify. We all can skip over the bits we don't like, or are too boring for us, and find the plot which interests us. It's a field of study called semiotics, a part of language that acts as signs and symbols we can all follow like a roadmap. But the direction they take us is not necessarily where we think we're going.

I had a great exchange with the doctors yesterday. I know I can get combative with doctora. It's not something I do on purpose. Hurt, confusion and fear easily lead to anger. They can also lead to submission. It just depends on what sogns we see in other people's language as to which road we end up on. I had a moment when I didn't understand what the doctor was telling me. I had a feeling she was not as well informed about endocrine issues like I had. Whether or not I was right really doesn't matter. She was seeing a pattern that I couldn't see, and in it there was something that worried her. She was able to explain it to me, and suddenly, I relaxed. Yeah, it meant getting a spinal tap on my birthday, but at least I was in the clear for meningitis!

On my way out I ran into a man who had been thrown out by the doctors from the hospital (contrary to popular belief, they can throw you out or keep you as long as possible at an ER, the only recourse is medical malpractice, if you live, can afford the attornies, and win your case). He was hostile, and the people there didn't understand his difficulties were not because he was messed up or drug seeking, he was still recovering from a stroke. But piss the staff off or anyone else, and they'll throw you out as equally skillfully as they will treat you.

So yeah, they doctor hit a nerve in my spine, but it wasn't as bad as the first spinal tap I had where the poor student really jabbed me, and the doctors didn't bother to tell me to take it easy afterwards. Apparently I have tough skin, too, probably a side effect from my Sjogren's, but at this point who can say if it isn't from the nerve damage in my skin too? Sometimes my Sjogren's is in remission and I sweat like normal. Other times I don't and save money on underarm products.

It's the same way with medication. It can heal, cause harm, or get you high. Truthfully, the drug doesn't care which it is. Crestor can save lives, or it can cause paralysis. Marijuana can get you high, hungry, and horney, ot it can take away pain, instill joy, boost proper immune and endocrine response, and heal PTSD. It can make you forget, or it can help you remember. Any medicine can do that. Any medical prodecude can do that. Is having a permanent condition bad? Sure. But not so bad if you consider the alternative was dying.

In Iceland there's a saying: it's not the drugs who make the addict, it's the need to escape. What's the difference beetween a food addiction and drug addiction? You can't quit eating food. But then it's just as dangerous to avoid all drugs. Christian Scientists have a huge problem with early mortality for that reason. Heck, you can get a prescription for oxygen, and that stuff is free in the air! Oxygen is a drug that causes euphoria. But you don't want to quit breathing just like you don't want to quit eating, just like drugs can be helpful, harmful, and fun all at the same time. Life is a double-edged sword that way.

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!

Invisible Disabilities 8th Annual Awards Ceremony

if you live in the #Denver area or can travel to the Denver area by October 23^rd, you WILL want to join us. If you don't know the story about InvisibleDisabilities.org, you should: they coined the term "Invisible Disabilities," and testified in front of Congress to include people like me, who are disabled, but who make disability look awesome.

I've recently moved back to St. Louis into a very snobby building, and you wouldn't believe the discrimination I've faced. Well, i take that back, you probably do know. I even had to write the Board of Directors of my building and remind them of the Americans with Disability Act, the Reform Act of 1973, and the Fair Housing Act of 1988. My father is an attorney, and they went to his place of work to hand deliver a letter of complaint agains me like I'm some child, and I'm over 40!

So if you think discrimination against People with Disabilities is a thing of the past, you are very poorly informed. Just because there are laws doesn't mean people follow them, especially people with power. But they have no idea who they're effog with. My neighbor used to be the head of the local chapter of the ACLU.

They won't know what hit them. But they will know who. <evil grin>

Do join us in Colorado!! We'd love to have you. Tickets on sale NOW!

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.

Wit's End

This is me, a raw an exposed nerve, without a bone of guile in my body. I know I give everything away in my face, and in this much pain, I couldn't lie if I tried. That's a genuine pain problem for you: ruthless. And what's more: a drug addict can run circles around me all day. They can contain their emotions because they're not receiving cruel and unusual punishment from their own body. You think 30 million have a problem with diabetes and that's a big number? Try the number one debilitating ailment, the number one disabling problem in the U.S. Chronic pain. Madame, there is no second. It eats up the most public resources and ends well paying careers instantly. This is from the book, Next Medicine along with Social Security Administration statistics as previously cited in this blog.

I couldn't pack myself I was so sick. I can't unpack myself. This pain doctor, unlike any of the pain doctors I've seen in 13 years, wants an Illinois or Missouri ID. I just moved home. The State licensing bureau doesn't accept my current Colorado license as a valid ID. They had a two page list of all the paperwork I needed to being with me and the doctors only give a thirty day supply of pills to last you this whole process.

Guess who can't get any of this done, eh? The person with the painfully crippling disease, that's who.

We need the DEA to stop practicing medicine without a license. That's the only way you're going to be able to tell the junkies from people with legitimate pain problems. This is cruel and unusual punishment and I haven't broken any laws! I just want to be able to manage my pain and not a speck more!! I like being lucid thank you very much. I rely on my brain for my money, and I'm not about to compromise on that. But I'm broken. I have 13 years of paper trail to prove it. I have moved several times to find better health and was even able to return to work for a while.

But my health caught up with me. I have proven to the federal governments high standards, and they have me listed as RETIRED. And this at the tender age of 29.... I know people say that's the dream, but man, don't do it this way!

I am extremely lucky in other respects. There are people worse off than me, of that I have no doubt. I'm related to some of them. And I try to be there for them as best I can, when I can. Now is not one of those times. We need to stop the war on doctors and patients. It's inhumane and unconstitutional.

Make Money While Disabled

If you follow my blog at all then you know that I am all about advocacy, regardless of the topic. A while ago, I interviewed a certain someone who wished to remain Anonymous. I purposely waited to publish this interview to protect this person's Anonynimity. This is going to be the new purpose of this blog: To give you the information you need, especially if you were disabled in CHILDHOOD, but want to live, and be able to afford all the enormous out-of-pocket expenses the goverment DOES NOT cover, all while on a fixed income.

As per my Attorney's advice, I must give the foloing disclaimer: WHAT YOU READ HERE DOES NOT CONSTITUTE MEANS/MODE/OPPORTUNITY/MOTIVE/or INTENT TO DEFRAUD OR DEFUND THE GOVERNMENT IN ANY WAY. If you are really and truly disabled and you KNOW in PROVABLE AND PROFESIONALLY DOCUMENTED EVIDENCE that you will NEVER get better before your death, read on. If not, please stop reading NOW.



















































I cannot thank you enough for your willingness to participate. If you have any questions, please feel free to contact myself and I will be happy to answer any and all questions.

Let’s get to it, shall we?

Many of you may not know this but under our current POTUS, disability numbers have more than doubled, and if your are disabled between the ages of 18 and 49, you're *uqued (pardon my slang). Basically, governments work on lying to you so they can try and keep all the money AND the power. There's a little known rule that I did NOT include in my book for this very reason.

I keep this secret to keep you and me honest. I know there are people out there who will abuse the system. The system is also corrupt. We are, right now, esentially a Bannana Republic, and as such, the rich get richer and the poor get screwed.

With my exposure to the legal system, I know just enough to get me into and out of a lot of trouble. I wanted to become a lawyer myself, but got too sick before I had a chance to attend school and pass the bar. This isn't me whining. I'm probably much happier as a result. In fact, I'm sure of it. But I want to continue working when I can, volunteering as much as I can, and all the rest, so that I can improve my life and my level of fitness as I age and my rare disease gets worse. I want to help YOU do the same.


Now that that's out of the way, here is the first in a series of Q&A's





1. What is the nature of this business and how long have you been in this type of business?

I mostly sell gifts and design products. Almost everything I make and assemble myself, and all my crystal jewellery is sourced from high quality mines around the world. I started in April this year, officially, although the ball started rolling just before around the end of March!



2. Have you always had an interest in this area? Or was this something you created out of necessity?

A bit of both. I was in my last year finishing my degree and I didn't want to move back home, but of course, would have rent and bills to pay! At the same time, I was very unwell through a lot of my degree and feel lucky I made it through, so I had a lot to think about. In the end, as I always loved being creative, I decided I really wanted to create my OWN job selling the things that make me happy!


3. What type of illness do you have and how long have you had it?

When I was 12, I first developed depression and anxiety. My high school were very concerned throughout my entire attendance there, and I eventually got taken to a doctor when I was 15 and bumped as a priority to a mental health centre for children and adolescents. Although I received CBT and medication, I still had regular relapses. When I was 17, I had my first major suicide attempt not long after leaving child and adolescent services and was rushed to hospital for poison control. Since then, I've attempted suicide five more times and had several relapses. At 22 years on though, I'm still here! More recently I'm getting treatment for an eating disorder and have had to be really open about pain issues with my GP, but I'm making sure I stop covering it up and access the care I need.


4. How are you able to balance work and “sick days?

Fairly well actually! A slight cheat really, my partner is really supportive and helps me do the deliveries because my anxiety can make it stressful doing the daily post office run and sometimes just getting out of bed can be enough on my worst days! I do the bulk of the work but she helps picks up the odds and ends. Without her, it would be harder, but not impossible. Luckily most customers are very understanding and I actually have very quick postal times, so it wouldn't hurt if they got delayed by a day or do!

5. Everyone dreams of having a full-time, work-from-home job. What is something you would like to share with both "normal" people and people with disabilities... Some secret that you don't mind sharing that you think people REALLY need to know before attempting to make money while disabled?

Working from home definitely requires discipline and isn't an 'easy' route by all means, but when working in full time or even part time employment with set shift hours and expectations is unrealistic, it gives you the chance to keep busy and gain a sense of accomplishment and independence. Being disabled doesn't necessarily equate to a complete inability to work under any circumstances, often with a little extra support and adjustment of the traditional work structure are all that's needed. I firmly believe with the increase in technology, there is definitely an increase in opportunity for home work for anyone who needs that extra flexibility and freedom.

Thank you so much for taking the time to talk to me and my audience.

Absolutely, this was fun! Cheers!


Cheers, Anonymous! Come back any time ^_^

Problems of Success, Success of Problems

I was in the hospital for three days when my four+ year migraine first lasted a week. I was put on IV-DHE, and for thirty blessed hours, my heat went from level ten to Zero. It was a miracle, and that first success fueled me for the next four years. I knew it was possible, so I could get there again. Oddly, however, when my head pain went away, a whole new pain came back, one that had been completely overwhelmed by my head pain to the point I didn't notice it. It was a wound left over from a three-day course of high steriods, and man did it hurt now! This is what we call a problem of success, and I'm going through one now.

The success is that I'm in remission. The migraines have been fewer, and I'm much stronger on no prednisone. My body can react in the moment to stress, instead of getting a full dose of cortisol in the morning and a shot for When Things Really Get Bad^TM. It's nice to have peace of mind knowing my body Will take care of itself.

Only, my body is taking care of it self and it's much LOUDER ABOUT THE PAIN! Ugh. I can only laugh, really. My grandmother had a saying, "Life is NOT for sissies!" And boy howdy was she a trooper! I can only hope to life up to her performance, nevermind the performance her mother did. (I let you all in on my inner thoughts so that maybe, through my struggles, you can find some peace of mind that you're not alone!) I've got some work to do, that's for sure.

But then a heap of problems can also bring about unexpected success. I, for one, was a horrible speller growing up. I hated vocabulary and was often teased for my phoenetic spellings. Today I was trying to spell filet mignon for a story I'm working on and was delighted to discover I'd stuck in an extra 'i', but besides that, I got it right! No reversed letters, no mis-heard vowels, and the next time, I had it right for sure! Such a good feeling to triumph after a long struggle. Each milestone counts.

And I can remember that works for struggling with my body, too. There are moments when the conditions are right and I can move without thinking about it, when it doesn't hurt all over. If, with the help of my doctors, we can find the right combination of chemicals to set my nervous system straight, chemicals that don't interfere with my mind but instead improve my abilities, then I am thrilled to do the work. I am chomping at the bit to be able to work and connect myself with the world again.

I despair being caught in a cage, whether my body or my apartment. I have someone with me now who can help me reconnect (because he wasn't disconnected like I was). I have skills I want to use to help communicate complex ideas in language that helps everyone understand, and I love dealing with engineers and quick-minded people. And I know that this is not drug seeking because there are whole classes of drugs that I won't take: benzos, ritilin, anything that affects my norepinepherine levels including what they put in novocaine nowadays (I learned that one the hard way). Including not too many opioids because it causes me to sleepwalk. I've left a building dead asleep, no thank you.

I'm a tough nut to crack, but I'm willing to do the homework to get me back on track. Setbacks will come, and new solutions are often required. It takes perserverence to overcome the insurmountable. We don't know success is on the other side, but it certainly isn't here, so let's keep marching... With all this $#!+, there's a pony around here somewhere!

There will be problems and there will be success. Much like energy and mass, they are completely interchangable.

More Than One Right Answer

I was asked the other day how I keep my faith (in a God of my understanding) when I've had so much happen to me. A friend was trying to play the "Have you tried" game with my migraines. I gave her a few tries & then I explained, in order to be considered a candidate for the experimental ONS device, it had to be show that I had vigorously tried every available option in 2007 and have it fail. I was among a handful of people arcoss the country allowed in. And that's when she asked me, how do I still have faith?"

It reminded me of a time when I must have been four, and the whole family was playing a game of I-Spy. We would get the color, and the first letter of the name of the object, and then we had to find the thing my parents had in mind. They had said, "Red, B!" And I had come up with "Red Ball," which was a piece of a toy I had, not the whole object, but I figured it was close enough. My answer surprised my parents, and they had to admit, yes, I was just as right even though I hadn't found their answer.

There are more right answers out in the world than are available to me. When I was a part of that study, it was one of those miracles of luck where all the right people are in the right place. Oh, that doesn't exclude one really bad apple from being in the mix, and in charge... But still personal miracles can happen despite even rotten folk.

There is so much more going on out there than any of us are aware of, good work by amazing people who are changing the world and even they can't know the true future impact of what they do. Even though I still struggle with disabling conditions, there is progress going on everywhere, progress in me that I cannot see yet, progress in the world around me that I haven't met yet.

The same is true for you. As long as you can hang in there in the best spirits possible, that gives you a chance to meet those opportunities. I know that sometimes my biggest foe is my own doubt, and that I have to have faith that whether or not I get better, that life on the whole can get better, giving me more encouragement to fight the good fight. There will still be times when I'm knocked down and question, but if I'm honest I question success too, so who am I to judge?

Dealing with chronic pain is soul-stealing, of that there is no doubt. Pain robs us of quality of life and robs us the ability to participate in Life. It's the latter which is the most damaging because participating in Life is what allows our souls to grow and overcome those stolen pieces. Even if we must suffer in a tortured body we cannot escape, the beauty and awe of life can be a balm against pain. Connecting with others and being part of a group can invigorate more than any elixer.

The longer I live, the more I see how limited even my imagination is. I may think there's only one right answer for my life, and I have to have that right answer or I'm doomed. Yet the more I see and discover over time, the more I find there are several right answers out there. More than I know. More than my doctors know. More than any of us know...

And in that space of the unknown lies all possibility for you and me. You can have faith in that.

Still In Remission!!!

Halleluia, my pituitary gland is working!! However, this tyme is strange because my thyroid is underactive and my pituitary gland is acting like it's primary hypothyroidism. That's fine! As long as I don't have to take prednisone, I'm a happy girl! That is the one of the worst tasting medications ever. I'm lucky in that I don't get side effects when I'm hypo-adrenal, but taking a pill is no subsitute for the real thing. With a pill, I get all my cortisol in one dose. The adrenal glands, however, adjust moment-by-moment based on the body's need. Guess which one feels better? Natural, of course.

I was so scared, so scared... But it looks like my symptoms are migraine only, which thankfully makes everything a LOT less complicated. It also opens up a whole class of medications for my migraines that wouldn't work before as an added bonus! I am tap-dancing with happiness! It's always a wonderful thing when I can walk into my doctors' offices with GOOD news. They love that. I love that. Everyone rejoices!

[Edited to Add]

I should give a big thank you to everyone who has prayed or hoped on ky behalf. I do believe in the power of human beings to affect the lives of others through prayer, Reiki and belief. We undersand just a fraction of this vast universe, and why diseases go into remission is one of them. I mean, I know there's a biological underpinning that we don understand, but there are bigger things in the universe than are dreampt of in all our sciences. Or, in layman: there be some spooky stuff out there and I'm glad of any good luck that comes my way.

So thank you, I do appreciate it. This helps so much, and I hope to take full advantage of my fortune!

Blessings upon you!

Sleep Triggered by Migraine

I'm turning to my audience on this one. I can't seem to find it in the medical literature, so I'm asking you: have you ever experiences a migraine causing you to sleep? I've been experiencing this for the past year: my migraine triggers will start to flare, and I start falling into an irresistable sleep. I'll even dream that I'm still awake, and this has caused me to do things like sleep-type gibberish and delete apps from my iPad. The only medication I've taken is my nausea meds, and sometimes not even that! No narcotics, no triptains (Imatrex and the like). It happened again yesterday, and it's driving me crazy.

I'd like to sleep in a bed like a grown-up, thankyouverymuch. I don't appreciate falling asleep in front of co-workers. I'm nodding off on my sofa like a little kid. And the consequences have been the loss of some important work. It's so frustrating not to have a hold of my reality. To dream I'm still hard at work when I'm sawing logs in the cube farm is embarrasing! And I don't use any app that doesn't have an icloud or dropbox backup. It's maddening to Craft pitch deck or a presentation letter over days only to have it lost in a 5 minute cat nap. I suddenly come out of a dream haze and see my random sleep wreckage that my thumbs have wrought...

It all made sense in the dream.

Some people say they do their best work in there sleep, but I certainly don't.


Has this happened to you?

I wake up the second the migraine trigger has dissapated. And it's the weirdest migraine symptom I can find. There's plenty of information on migraimes caused by lack of sleep. That is not this. And I'm pretty sure I can't be alone.

Thanks for your comments!

Migraine Arsenal

It's been stormy on the front range, so I've had to pull out all the stops for migraine control. Whenever I meet a new pain doctor, I always ask for an extra long first appointment (they usually are longer, and I ask for more time still). This is so I can explain to the doctor all the things I do for pain control outside of the pills they give me, so they truly understand the lengths I go to to keep these things under control. I figured this might help someone else, and it shouldn't have to wait for Migraine Awareness month (June).

Schedule
The first weapon in my arsenal is a steady schedule. I haven't used an alarm clock in years, because waking up suddenly makes me physically ill, so over the years I've learned when I need to sleep to wake up in time, and I keep to this schedule, unless the pain disrupts me (like last night).

Exercise
When a migraine first starts signs of forming, if the weather is good, I'll try a brisk walk with the dog. If the weather isn't nice, I'll start cleaning. If I'm in too much pain to do either of those, it's on to the next one.

Red Bull & Water
This stuff is amazing for my migraines. For some people caffeine makes their migraines worse. Not me, and I was even prescribed caffeine as part of a migraine medication early on (Cafergot, look it up). The Red Bull has an added bonus of sugar (often a craving) and B Vitamins, which also help. (Suppliments like Magnesuim don't work for me and I already suppliment Potassium). I add the Water chaser to be kind to my kidneys, and for the sake of my stomach, I make it ice cold.

Ice Cream
I will bundle myself in blankets just to be able to eat ice cream to stop a migraine. I go with Ben & Jerry's too, since it's an ice cream that hold even more cold. (I strained my wrist on B&J's working in an ice cream parlor as a kid. It was almost a block of ice compared to the soft fluff of other ice creams. I eat it with a knife now.) It's magic on my migraines to have something that cold soothing the migraine from inside my head.

Sleep
This one is a blessing/curse. I have begun to fall asleep ahead of some migraines, and sleep through a weather trigger, and I wake up on the other side without the migraine ever forming. But this is not something that easily fits with most employment, so it's only useful on weekends & vacation.

Ice Packs, Medication & Distraction
If all of the above doesn't work, next is ice packs and distraction. If I'm to this point, I'll also start with a few ibuprophen and an anti-nausea pill. Sometimes if I can keep my stomach calm, I can keep the migraine under control more and I don't have to go the big guns. I'll use distractions like composing a blog post or really good edutainment to try and keep the pain out of my awareness as much as possible.

Oxygen, Ice Packs, a Shower & Big Guns
If the migraine comes on so strong that I need the big guns, usually the big guns alone won't to it. I'm not just reaching for a narcotic at this point, I'm also using my oxygen machine (usually used only at night) and sitting in my tub with the shower un so that I can use the random sensations from the water act as a sort of static "noise" on the nerves that draws away from the pain sensations in my head. Lying agains the cold tub on one side and the bouncing warm water on the other can really throttle some horrendous levels of pain.

I rarely use my full supply of breakthrough medication. Mostly I like it there to know I have it there, just in case. I don't want to pull out the big guns, ever. But sometimes I need them because my head feels like it's being mauled by a bear. I will always reach for the little guns first, I mean, when they're little guns like ice cream and Red Bull, who's complaining? However, I like the security of the big guns around. This is bear country, and the rest of the arsenal is useful too.

Note
Everyone's migraines are different, so not everything I do will work for everyone, and there's a great many number of methods that I've left out. For some people massage, yoga, Hemp CBD tea, and acupuncture work. I've been through many of these mathods for long periods of time through the years, so I know what works and what doesn't for me. if you get migraines, you will have to build your own personal arsenal, and this will take trial and error over time. Also, what works and what doesn't may change. I used to be able to use Botox, but as I've grown older, it's easier for the medicine to spread to places we don't want, like my eyelid. I regularly switch non-narcotics because my body over time starts showing unwanted side-effects. But we know the gaba-class of medications works well for me, cutting my pain by half, so we rotate through the medications in that class that I can tolerate.

You may have to go through the same. Always remember, though, that migraines is one of the oldest described medical conditions, and ancient cultures would pierce and remove part of the skull to help sufferers (it works, and there are reasons why...). Our culture, thankfully, is more sophisticated than that, and we have more options available. Discovering them is a process, however, one that's fully worth-while.

Pain versus Life

I'll be honest. I don't like leaving my house. My house is my comfort zone, somewhat literally. When you suffer from debilitating pain that can suddenly take away your ability to walk or grasp with your hands, and that pain comes on somewhat randomly, well, then there's a big difference between you leaving the hoise and me leaving the house. There was one time I had someone hold my purse, and he asked why it weighed 20 lbs. when it was so samll. I replied without thinking, "I have to carry so many emergency supplies. It's not just the emergency shot, it's not just the breakthrough medication so I don't throw up or become immobilized with pain. It's all the paperwork I have to carry that goes along with those medicines, all the doctor's business cards, all the emergency contacts (in case my phone is locked). And then there are the regular day to day items like wallet and keys. It is a minor logistical operation every time I leave the safety of my home. And that can create enough of a barrier to make me not want to go outside.

Even today— somehow my breakthrough medication fell out of my purse and I didn't have it on me when I needed. That meant having to muscle through an event, trying to concentrate, and also trying to keep my breakfast down. I learned earlier this week that movie theaters have only gotten louder since my migraines started. Apparently kids these days want to feel the movie explosions like some thrill ride, not just watch a story on screen. I about collapsed, and we were in the back row! (Thank goodness the feature was more an art house film, but even then there were parts in the soundtrack where I wanted to strangle the director, "Are you trying to hurt me? Stop the noise!" But thankfully those were few and far between.

But it made me realize, it's not just me! Well, it is mostly just me that reacts this way, but also, people are demanding more and more sensory input where I want less and less. As another blogger mentioned, I'd be happy if things were just normal for a while: "I want to sustain some sense of balance and maintain my work for a while." From Nikki's post, Maintaining consistancy is a good goal to have. And considering the roller coaster of pain we have ride "Forever," a nice, flat straightaway is a good change of pace.

So is it any wonder I find myself dreading the moment I know I have to let go of the handle of my front door? Not really. I don't know what to expect as much as the next person, but I can guarentee there is a high likelyhood that I experience pain. Sure, that pain is just as likely at home, but at home I know I can find comfort, I have the tools at hand that I need to take care of myself. It feels safer to stay at home because it is safer to stay at home.

But with spring exploding outside and around me, I also have a draw to be outside, to be with people, to explore, and discover, and grow. (My garden is full of little potato plants that have just burst through the soil!) I want to be able to be out there, engaged with other people, helping my community. And that very real fear of being stuck somewhere, in pain, unable to make my way home, can stop me from stepping outside my home.

I think, like Ms. Albert mentioned, I need to scale down my goals. Though I clearly have spring fever, I can pace myself as well. When I learned to ride a bike, it wasn't all at once. I started on a Big Wheel, moved up to a tricycle, then a bike with training wheels, then just one training wheel, and when I graduated to two wheel was when I realized the third wheel was causing me more trouble than helping. I had learned how to balance myself even as the bike moved from side to side beneath me. I learned how to feel the invisible tug of inertia and gravity and use those forces to balance and propel myself forward without thinking.

I am not there with my chronic illness yet. I need the training wheels of an emergency stash of pills in case they fall out of my purse at home. I need the emergency shot and the pounds of paperwork that go with all these medications. I am not in the clear yet. So it's perfectly okay for me to be cautious, and scale back my ambition to a more acheivable level. Does that make me less capable? Hardly. Though I may not be able to soar on invisible forces like I did as a kid, I now respond to much more serious invisible forces, and it's a testiment to my hard work that I am able to do what I can now, even if it's only at Big Wheel level.

Recovery is not a straight line, it is a ribbon that we follow through many twists and loops. We are always moving forward along the strand, even if it looks like we've fallen back. And it's okay for me to pace my recovery at a rate where I'm comfortable. After all, I'm the only one who really knows what's going on inside me. When consistancy has been gone for so long, it is a worthwhile goal to have.

Thank for the reminder, Nikki!

Remembering Our Worth

When we study history in school, we're taught the names of the big movers and shakers, the "important" men and women of the world. What you realize when you start to become a student of history, is that some of the most precious accounts we have, often called "eye-witness accounts of history," come from ordinary people like you and me. This is something I realized young, as my parents told me their stories of world and national travel. I was lucky enough to have traveled extensively before I became ill and through my recovery. I have traveled to the Hopi Nation, one of the oldest continuously enhabited places on this planet (the timbers in their homes have been carbon dated to reveal a construction time of over ten thousand years ago []), by one of the oldest nations on this planet. I have been privlidged to see their dances and been invited to sleep on their land.

And when I look at my father, still working so hard after all he's been through (his fear of hospitals rightly comes from a time he had to be quarentined on board a ship because of a case of Yellow Fever, and later in life he suffered three years of hives no one could explain... all while trying to attend college). He's seen an amazing age, and it is thanks to his interest in computers that I have had such an amazing career. We were talking last night about logistics and how he and I have similar experience of how to launch and invasion: his from his time in the Navy, mine from software and hardware products. It's the same theories because it's all about trying to coordinate the actions of many individuals into one large action over a wide scale.

This requires weilding two skills sets: the ability to work autonomously without oversight (working even if no one is watching), and the ability to coordinate with others, and often very brilliant minds coupled with hefty egos and personalities (getting along with exactly those types who do not play well with others). And all this networking must be coordinated through massive communications, often to different groups working in very different time zones. It requires an adherence to rules that can be frustratingly fluid, as flexibility is also required to adapt to ever-changing discoveries. In addition, people need to be organized in time and through time, kept on the roughly the same page and coordinating critical tasks at key points. All this results in what is known in the "biz" as: organized chaos.

Yet even with these similarities of knowledge, I also realize how much my father is a treasure: he traveled one of the last regularly operated ocean liners. He saw the first copying machine, the first microwave, the first VCR, and saw computers shrink from multi-roomed beohemiths into hand-held near-magical devices. He's seen me become a bionic woman, just like they had on TV, only to save me from pain rather than augment reality. But the marvel of that device: it had a battery, it was re-chargeable, and wearable inside the human body. What a creation to be witness to! And, too, he remembers growing up in the shadow of World War II, events that still shape the lives of every person on the planet today.

What amazing sights he has seen! And what's more, each of us is a witness like this too. Who knows who's letters are going to survive 1,000 years? Who knows what digital archeologists will find fascinating 10,000 years from now in the blogs and posts of our lives? Who will future historians look to, to be eyes and ears into our world generations from now? How will they find us different? How will they find us the same? Heck, what will these posts look like to me, thirty years from now? Hello, my future self! I'm happy to have written this down for you!

Which one of us will be discovered and renamed to suit their future language? How clumsy and archaic will my attempts at communication seem. Will any of this survive at all, or will some great catastrophy turn the lights ot on computers forever, causing all this knowledge to be locked away and forgotten forever? Who can say what the future holds.

Who can say what your future holds?

Is there an Opera sleeping in you? Is there a simple item you treasure that will become a family heirloom? Is there an act of forgiveness that unites estranged parts of your family? Or is there a phone call that rekindles a spirit of closeness in a friend? Much as this day might seem connected to yesterday, there is an impenetrable wall that exists between now and yesterday, one we can never step past. In each moment, we are given the opportinity to choose whether to keep in step with the past, or break with tradition and choose something new. Thought becomes word, word becomes deed, deeds become reputation, and a reputation becomes a legacy. Legacy becomes tradition, tradition becomes culture, culture becomes identity, and identity becomes preferences. Preferences become thoughts, and the whole cycle is born again anew.

What a miracle our lives are! What amazing things we can do! We can create such joy, compassion, and community together. So remember to celebrate your life and the lives around you. Give someone a word of praise or share a laugh just to help lift a stranger's spirit. We have such a capacity with our lives, in even the smalles things we do. Celebrate you, celebrate us.

We're worth it.

What Does This Say About Me?

I remember when I was a young twenty-something, there was an older woman who was a mentor to me, whom I loved, and who I wanted to emulate. Then suddenly, she became hospitalized for anxiety, and I found myself frozen. Mutual friends would say how much a visit from me would mean, but I was too afraid of what her hospitalization said about me. And I knew my reaction was irrational, but I just hoped she would get better so I could see her soon. What I did know is where I'd seen this before: in training films on alcoholism recovery. When someone in the family decides to get sober, other family members will often rebel, and even try to persuade the alcoholic to start drinking again, because of the fear they have about what that person's decision says about them. Here's someone they love, who they see a lot of themselves in, and they've chosen to put down something they know they enjoy, and they wonder, "What does this say about me?!

The answer is:

Absolutely nothing.

We may see ourselves in others, but that does not mean we are others. Just because they make a decision to change their lives does not mean there's anything you need to do except continue to be their friend. And I know that this is an instinct that is almost unavoidable when we're close enough to someone. But that doesn't mean we can't overcome it. I was able to send condolances to my friend and tell here that I was too scared, and I hoped she forgave me. If nothing else, we were always honest with our feelings. And she did get better, and was able to paint the town red, and I couldn't be more proud of her.

The reason why I liked her was she was a powerful woman and a force to be reckoned with. That didn't mean that sometimes she didn't need help too— we all do. The more important point was that she was responsible with herself and her life, and she was able to guide so many young women on to true self-esteem. I still have her signiture in my favorite book in a bookcase not too far from me. We eventually lost contact after I moved to the PacNW, but she has had a lasting impact on my life, and I credit her with a lot of my maturity. She taught me how to own my mistakes with humility and not humiliation, when I had not know there was a difference.

And I know that's the reason why many healthy people don't deal well with people with chronic illness. We just want our friend to get better so we can hang out with them like we used to, and we hope to God that we don't have anything chonic that may be lurking in us. Somewhere in the back of our minds we wonder if this is how growing old starts, or bad luck starts, and then we shake our heads, wonder why we're allowing ourselves to think so irrationally, but we still can't shake the feeling of impending doom, headed towards us all.

It's human to be scared. It's also human to overcome our fear and realize, our friend is our friend, and we all stumble on the road of life. It's worthwhile to reach out to others even if they haven't reached out to us, and not wait until they're better to seek their company. We can let them know their company is missed, even if we can't talk to them directly. (Although this is now the age of cellphones and SMS text messages, so really, you have no excuse ;) Know that even just a word of encouragement and appreciation can help so much.

And remember: What does this say about you? Nothing you need be ashamd about. You're human, just like the rest of us.

The Bumpy Road of Recovery

I have been freaking out all morning, and I just now realized why: I think my remission has ended. For the past 3 months or so, I've been able to be off both my steriod (prednisone) and my thyroid medication. It's a balmy 72 in my livingroom, and I'm shivvering like it's 50. I have on sweatclothes and a blanket, and it's only when I add a space heater blasting on my legs (under the blanket, no less*) that I feel warm enough. I know it's not a cold, I just got over that. Add to that other symptoms that are tell-tale, and I may not be in remission anymore.

It's difficult to tell, sometimes whether it's this set of symptoms causing one thing or another. But I've gone in and out of remission at times, and I've always been spot-on in my sense of these things. Many doctors find this difficult to believe, so I've learned to prefice what I know with, "I think I might..." and that results in much better service. But trust me, I feel it when things aren't right.

And I hate it.

That's why I've been sitting, binge watching videos, with a blanket and heater on, because I don't want to admit that I'm still frail enough to require this crap. I hate taking pills, and I have rebelled countless times, even in the onslaught of migraine pain! I seem to want to insist I'm fine and don't need help, when clearly both I and others know I do. I'm not like some people who seem to love being sick. I want to be able to conquor the world, and sick was just not a part of my plans! I was so bad, that as a kid, my parents used to think I ran myself ragged. They were partially right, because learning how to take proper care of ourselves takes time, but the also didn't realize how much of it was just the apple not falling far from the tree. My mother had pneumonia before I was finally able to talk her into seeing a doctor, who then sent her straight to the hospital. My father ignored his stroke for days out of the same stubborn fear. Is it any wonder I do it too?

Yet I have to count myself lucky. I do have a disease that goes into remission and one, that when not in remission, at least responds to medication. There are plenty of people who aren't that lucky. There are other people whose disease carries a stigma, where to be sick is also to be judged as earning punishment for a transgression, and most of these reputations do nothing to help anyone. The keyword to all of this is forgiveness.

I need to fogive my body for not being what I wanted it to be. I need to forgive myself for not having any control over it. I need to forgive others who, whether or not they caused their situation, deserve forgivness for at least not seeing a better way out of their problems. I need to forgive myself for being scared of what is a reasonably scary situation. And I can be grateful that I've been given the grace and courage to continue on despite it all. I'm very lucky the headaches aren't every day, and the further I can get from that nightmare, the more I can recover.

Though it may be a bumpy road ahead, I am glad that at least I still have a road. Each day is a new beginning, and I am glad I can take part in it. Even if that means being a little scared for a while about a slight decline in health. It's nothing I haven't lived and worked through before (my entire trial work period was while on these medications), so even though it's not how I would like things to be, it's all still manageable.

Ever forward!