Tuesday, September 22, 2015

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.

Monday, September 21, 2015

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!


Thursday, September 17, 2015

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!

Monday, September 14, 2015

Invisible Disabilities 8th Annual Awards Ceremony

if you live in the #Denver area or can travel to the Denver area by October 23rd, 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!

Thursday, September 3, 2015

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.