Wednesday, January 22, 2014

Borrowed needles, borrowed meds, borrowed time

After a week of spending the night sitting upright due to pressure headaches (sinus tachycardia/blood flow dysregulation) I finally saw my acupuncturist and got a small amount of pain meds over the weekend. Instant, joyous relief. Afterwards I was able to sleep laying down for first time in a week. This treatment stopped the cycle of wakefulness, mania, and pain that persisted for many days.

Unfortunately, I could not pay my acupuncturist for her hour-long treatment, nor could I pay for the pain meds she provided, due to losing my ability to work. I am borrowing against time: needles, meds, treatments. I am wondering why acupuncture and Indica are not covered by Medi-CAL, as they are a cost-effective, fast remedy for migraines and other syndromes caused by neurologic disorder. I suspect physicians see these natural treatments as a threat to their livelihood and their control, and therefore work to prevent them from being part of any healthcare plan.

The alternative to these natural treatments include any number of addictive, expensive, and potentially dangerous chemical (pill) remedies, such as: Triptans, ERGOTAMINE, vicodin, oxycodene, etc. The neurologist who treats me for migraines said these pills are "much worse" in regard to patient safety compared to the natural remedies I use. As a society we could replace these chemicals with natural, as-needed solutions. But it seems the addiction of our healthcare system to big pharma prevents rational solutions. Consider that many individuals cannot tolerate pills due to counter-indications and side effects. The result of this bias: individuals who are pill-intolerant (due to pre-existing conditions) are locked OUT of their own healthcare system, whenever seeking relief without dangerous side effects. To add to this complication: The full range of chemical treatments are NOT made available to low budget healthcare plans. SO one must risk the side effects associated with those treatments made available, which require regular and expensive blood tests to monitor toxicity levels and changes in brain chemicals such as seratonin. Or one must seek treatment OUTSIDE the official healthcare system. OR one might go to the ER to seek treatment (where additional migraine treatment options are available), due to the strict limit imposed by low budget healthcare plan.

If my acupuncturist were not willing to treat me free of cost, I would have gone to the ER to get ketamine, opiates, or Triptans administered short-term for my ongoing migraine pattern. I suspect my acupuncturist will not be able or willing to treat me without pay again, and I am thinking about what to do the next time. I will likely have to cancel my Friday appointment with the neurologist, as my new ACA Medi-CAL card has not arrived.

For anyone who wonders why one would seek no-cost or low cost treatment: though I have paid taxes and healthcare premiums for much of my life, I was denied access to the diagnostic and treatment methods normally associated with neurologic disorders. For decades I was denied care due to my conditions being difficult to diagnose and treat ("You don't look sick" was a refrain often directed at me, in lieu of any proper treatment). As a result of this neglect, these conditions have worsened significantly and they have effectively shut down my ability to work (and my ability to pay for treatment). This situation is a vicious cycle, and not uncommon in the U.S., where cost-cutting measures in healthcare typically result in a dearth of proper care for those who most need it, even when they have been paying for this unmet care for decades.

Thursday, January 16, 2014

How's that new Affordable Care Act plan working out for you?

Dear ‪Jayne O'Donnell at USA Today:

In response to your inquiry about new ACA policies: I completed application at Covered Cailfornia Xchange website in November/December (took 3 tries but I didn't mind). Went to see a GP for first time in 25 years on Jan 4th. GP was good enough to see me without charging me, despite I had received no card yet, nor any word from Medi-CAL. She nicely agreed to act as my GP, and initiated paperwork to procure a Walker thru Medi-CAL. Well ... looks like my excitement was premature. I received letter today from Covered California, stating: "You do not qualify for the Enhanced Silver Healthcare Plan, because based on your application you may qualify for Medi-CAL. . ." I would be happy at this point with the Basic Lead Plan, but I am to wait for word from CA state SSI office regarding my qualification for Medi-CAL.

What I did find out from my new (as yet unpaid) GP is: The migraine nasal spray that is recommended for patients like me (who vomit during migraines) is NOT covered by Medi-CAL. Also, the anti-inflammatory medication which puts most of my neurologic symptoms into remission (such as not-being-able-to-walk-due-to-tremors) is NOT covered by Medi-CAL. I suspect that the new medication just approved by the FDA to treat Orthostatic Intolerance will NOT be covered by Medi-CAL. Apparently they decided to focus on just the pre-WWII treatment methods for now. And of course one CANNOT see a Psychologist under most insurance plans including Medi-CAL, as they just don't have enough of those coveted Insurance Code options to sprinkle allover their bills the way the other docs do*. NOR are we allowed to go see the dentist. It seems I have the misfortune to be born an individual generally not covered by Medi-CAL. Would that I were born without teeth! Or a brain!

In the meantime I am making plans to mod my Walker. How to add patterns/colors to the plain frame and seat. How to pad the plastic seat, and affix a Police Car Alarm Light so people will stop trying to run me over in the intersection during tremors. And how to cover up the huge plastic UPC label Medi-CAL affixes to the leg. Because if I lose my Walker (for example, due to untreated orthostatic intolerance) I would prefer that someone deserving get ahold of it. Perhaps someone who did not get their application approved for a Walker. No offense, Medi-CAL. I appreciate any effort made on my behalf and those who are in need of medical help.

All in all it seems like things are looking up for "uninsurables" but it depends which diagnoses you have and how many. Poor sick people are apparently still the least likely to receive adequate treatment or meds-that-actually-work. The funny thing is: this permanent underclass costs more to maintain than does adequate treatment for these same individuals – it surely would be if costs for medical treatment in this country reflected the actual cost of manufacture (Mark-ups can exceed 40 times the cost of manufacture). Imagine if we returned to work instead of languishing without treatment. In the meantime I am dreaming up how to work my way into the electric wheelchair with real foam padding and unicorn-theme hologram Mag wheels.

No, I don't blame Obama. This system, however flawed, is mos def an improvement. But we are the only nation ever to implement Universal Healthcare without a single-payer system – ensuring that the elaborate pyramid scheme called "Health Insurance" is still intact, and even more profitable than before. Thank you, politicians, for lining your pockets with billions of dollars of Health Insurance Lobby $ over the last half century. This prevented you from being sensible or sincere in efforts to reform healthcare. You and the insurance administrators have our lifetime healthcare premiums locked up in your pants pockets. Noooooiiice pants, BTW!

Thank you, Naomi Spellman

*These medical codes allow doctors to get paid for services rendered. In order to be adequately reimbursed from Insurance, doctors' offices must falsely load up these codes and over-bill, due to insurance companies refusal to pay a significant portion of legitimate services already provided. Doctors and other health care providers attend classes in medical school which teach them how to manipulate these codes and over bill in order to be adequately reimbursed for their services. Doctors who no longer accept insurance now say they are earning more, as they were paying their accountant between $40-65 to prepare just one of these elaborate Insurance bills. The problem with Psychologic counseling is: they can't very well break-down a one or two hour Therapy session (such as CBT) into discrete codes.

Tuesday, January 14, 2014

Prone Comedy, Part 2: Service Animals

I'm trying to train my service dog on my own – with some help of course. It's going well, except for the "Alert" command. He is supposed to raise one paw and press against my leg when I am having an acute episode. He supposed to remind me to sit or lay down so the blood and oxygen return to my head. But instead of raising one paw, he places his paws on either side of my leg while squatting. It probably looks like he's humping my leg.

"Excuse me miss is that a service dog?"

"Yes!"

"What is he trained to do?"

"He humps my leg whenever I freak out" End of conversation. No more questions.

But the most effective response to this question is: "I have a mental health disorder, and I need my dog to calm me down" Which is also true, tho not his primary task. But people are afraid of crazy people. They don't even bother to ask what task your dog performs. Once you tell them you're crazy they're already sprinting towards the door. It's great. The whole place empties out. I have the run of the place. I can go back in the kitchen, I can fix myself a meal. I can change the channel – to cartoons of course. Just for me and my dog. People make me nervous anyway.

I have a service dog, but what I really want is a service camel. I don't know what he would do for me, but the conversations could be interesting.

"Excuse me miss! You can't come in here with that camel."

"He's a service camel."

"What is he trained to do?"

"He carries my water."

"Can't you buy a water bottle?"

"I need a lot of water."

What about a service goat? He could knock me over whenever my blood pressure tanks and my brain freezes. That way, instead of standing there looking stupid during a conversation, I can just blame it on the goat. When they me ask what he does, I'll say:

"Whenever I'm about to say something really brilliant, he always cuts me off"

"How does he know what you're about to say?"

(goat butts from behind) "He does, he just does."

The other day I was driving with my dog. In the Diamond Lane. No, that's not the lane reserved for rich people. In California, it's the lane for rich married people. Off limits to me. So, so off-limits to me.

But whatever – I'm driving in the carpool lane, having a conversation with my dog. Dogs are people too. They talk – not with their mouth but with their eyes. And I really get into it. I'm moving my hands, gesticulating, explaining to my dog why my boss is such a bitch. BIAAATCH. And he gets it, he really does. I can tell 'cause his eyes narrow whenever I make a good point, and he starts nodding. Or maybe he's just falling asleep.

But unfortunately the cop that pulls me over doesn't get it. He walks up to my door. His eyes narrow behind his mirrored glasses. I can see myself in his glasses. I look like an idiot.

"Miss, you are driving in the diamond lane without a passenger."

I look hopefully towards the back seat

"Is that your dog back there?"

"Yes! He's a service dog. I, uh, have a mental health condition . . ." This time, it doesn't work. He doesn't clear out. Cop's still standing there.

"I'm, I'm not dangerous. But sometimes I become mildly delusional."

"Is he – a talking service dog?"

"Actually he was trained to perform Cognitive Behavior Therapy on me while driving, so I can figure out which exit to take."

Cop looks interested. His eyebrows go up. Not sure, but I think he's looking at my tits. I keep going.

"But he only speaks Farsi, and I can't understand him. I think he was telling me to get off on Magnolia."

Cop nods. My brain suddenly freezes. I really need my goat right now.

"Ma'am, you'll have to remain in the regular lanes without a human passenger."

I nod, defeated, taking the ticket. Shit. The cop goes back to his car. Now I'm pissed. Tryin' to figure out how I'm going to pay a $500 ticket. I decide it's the dog's fault. I'm not going to buy him any kibble. Or treats. Or take him to the groomer. Or get his anal glands expressed. I'll do it myself. With a curling iron. I treat him like a king, and how does he repay me? By making a fool out of me, going silent as soon as the cop walks up. It's like the two of them know each other or something, like they are ganging up on me. I need to calm down. I need my dog.

Maybe I should buy the dog a booster seat and a Justin Bieber mask. That way, I can drive around hot-boxing with abandon, and blame it on him.

"Excuse me miss. You're driving in the diamond lane without a person."

"I have a service Bieber."

"What is he trained to do?"

"He makes excuses for me"

"Is he working right now?"

"Actually, he just announced his retirement"

The cop gets smaller and smaller until he disappears. I'm driving in the diamond lane. In the back, there's my dog. Next to him, a camel. And a goat. And Justin Bieber. They're all yucking it up together. They're kicking the back of my seat. They're making excuses – excuses that rhyme. Then they each put a single paw on my right shoulder. Just to remind me, I need to go lay down.

Friday, January 3, 2014

Thin Ice and a Loose Screw

This week, for the first time in 25 years, I was able to visit a doctor with health insurance coverage. I was "uninsurable" for 25 years due to pre-existing conditions – despite working since age 15. It went well. So far so good. It feels like a terrible weight is lifting. And yet I am simply experiencing something that my family, my friends, and my colleagues mostly take for granted. I hope to recover from some of my symptoms. But I don't know that I will recover from the belief that my life has less value than others'. Otherwise wouldn't I have been worth saving? Aren't I worth fixing, too? The last 25 years feel like a cruel experiment. I had to think of the time when I was 6 years old and a bunch of us decided to go ice skating on the Norwalk River.

It was late winter, and the uneven ice had started thawing. We were forbidden to skate on the river. So we snuck outside with our skates. Some held back once we got there, slowly pulling their laces, eyeing the bubbly surface. I wanted to show off. I had a habit of tagging along behind kids who were older than me. Lisa Dellio egged me on. I slipped through (I forgive you Lisa. You were, after all, of me, dell'io). We had barely ventured onto the surface, looking for smooth spots. There were none. I ventured further, untethered. The ice broke through, and I found myself submerged up to my ribs. I treaded water, then clutched at the thick intact ice above me. The surface of the thick lump was rough, as were my ice encrusted mittens. The water swirled past underneath, gently tugging. I was afraid to let go of the hold I had. I looked up at the kids who were now standing at a slight distance, fascinated.

Of course we all knew it wasn't safe to approach the broken ice. We also knew that nobody ratted. That was the rule. I was on my own. It is possible that someone tried to loosen the mildewed rope affixed to the raft that sat next to the little pier. It's possible that someone looked for a stick, or shouted instructions to me. I watched them, and they watched me. I managed to pull my right leg out of the water and on top of the ice. I laid my front down on the ice. Somehow I managed to come forward, and then out, without slipping backwards. Everyone split. I ran home, my lower body dead numb. I looked down at the yellow poly knit pants I had on that day, wondering if Mom would know they were wet. Were they darker now than when dry? She was cooking when I opened the front door. I ran upstairs. I hid my wet things. I hid my shame. I thought for a long time about what happened. I wondered why it was me in the water, and them on the side.

Having invisible disabilities means: you are forever stranded on thin ice. You are forever separated from normal. The health insurance companies separate you – by denying or withholding appropriate services due to expense. Doctors separate you – because you are difficult to comprehend and time-consuming to fix. Society separates you – because of their irrational fear of the brain in all its complexity.

Thursday, January 2, 2014

Jumping Genes Linked to Schizophrenia: the social function of Neuropsychological affliction and Viruses

A new study, published today (Jan. 2) in the journal Neuron, suggests these jumping genes may alter how neurons (or nerve cells in the brain) form during development, thereby increasing the risk of schizophrenia. "LINE-1 retrotransposition may be a mechanism to generate cognitive diversity in the human population," Muotri said. "This mechanism may have evolved to create outliers in the population, people with extraordinary abilities. On the other hand, the other end of the spectrum may be patients with schizophrenia or autism."

This is exactly as I thought. Because it is usually the younger children in the family that are afflicted with this disease (rather than the first child to thrive). Biology favors diversity. Perhaps an intact, extended group performing varied complex tasks together or in the service of a bigger goal engendered a need to diversify temperaments and abilities quickly (within a single generation, during a time extreme stress). Diversity in cognitive ability is one example. Often the oldest child is deemed "the smart one"; in most cultures parents make a greater investment in the oldest child. The young parents of a first child have the energy and motivation to invest in the first child. Whereas the youngest child is often the biggest (most physically adept). The youngest is coddled, humored, given physical (simple) tasks. Perhaps in the small groups common in early human societies, this jumping gene allowed for behavioral and temperament variation within an extended family.

Consider that humans remained in isolated groups (with limited gene pools) for a long period of development. If we stretch back to proto-humans, we see hundreds of millions of years of this kind of isolated, small group evolution. Consider that these complex social groups had a need for coordination within them – and diversification. In these extended families, each child played a role: for the oldest child (the first child to thrive) cognitive predilection is favored – in cases of limited resources – over physical size or strength.

Populations in these complex social groups probably escalated quickly (due to intelligence, and the ability to protect themselves, and to exploit available resources). Could this complex social development have engendered a need to quickly change the distribution of behaviors among siblings and cousins? For example, due to the need to differentiate among siblings when distributing an array of tasks? Parents delight in describing the differences among their brood – among siblings and cousins.

This genetic aberration persisted for a reason. There has been a recognized “usefulness” associated with one or more of these afflictions. Consider the southern generals Grant and Sherman, both determined to have classic Bipolar tendencies, the expression of which mirrored their state of mind as they planned for battle, wherein they prevailed despite bouts of depression and doubt leading up to the battle. Children within a family seem to sometimes “complement” each other in tendencies / personality. These afflictions temper behavior in very specific and predictable ways, and affect: the time of day you are active, the type of activity you prefer, how long you can sustain focus, how you make decisions, whether you respond physically and quickly when angered, whether you stay angry when riled. Today we see these behaviors as afflictions. But in a time when people rarely reached 40, these qualities may have conferred a short term advantage.

Consider what benefits untenable rage could confer in a battle to the death. Consider also that when one is suicidal, one defies death, and has a wish to be extinguished themselves. Consider that thoughts about death as well as anger occur spontaneously in Bipolar patients during mixed Bipolar or rapid cycling phases. Consider this phase of dangerous mental patterns usually commences at age 45 among Bipolar patients – an age that was considered no longer useful for almost all of human existence. Suicidal behavior or thoughts are typical of Bipolar patients in specific states of mind, and these states of mind can be excited by circumstances (i.e., before battle). They can be, at time, easily swayed to passionate acts.

Age of the parents is pointed to as a culprit in mental health disease. This makes sense as well; older parents no longer have the energy or interest to invest (time, resources) in their youngest children. These children, then, must possess unusual ability to be useful in specific ways. Even a flair for the dramatic becomes useful here.

We already know that a jumping gene for obesity can be switched on when the body detects a dearth of nutrition in the male and female source of sperm and egg (whether this dearth is caused by lack of sufficient food resources, or by ingestion of junk food). This switch ensures the quick generation of fat from meagre food – as a way to give the child the best chance of success. These genetic switches seem to flip in one direction only (can we change that?!), so the resulting child will forever have a metabolism advantage – but only in a food poor environment. In other words: a short sighted fix for an immediate situation – which in today's world becomes a problem.

Now consider how this switch mechanism could operate in extended families. If we can turn obesity on and off for short term survival advantage, why not turn on a genetic switch to make sure that a brood of siblings and cousins differ significantly from each other: in temperament, in “intelligence” (a complex equation), in physical strength, in physical coordination, ability to focus, etc. This growing population would become vulnerable to stressors such as famine, drought, viral and bacterial infections, poor sanitation and hygiene, increased physical demands, growing population, a sudden increase in complexity - due to introduction of Strangers. Any of these conditions could potentially benefit from the genetic aberrations we today call Mental Health Disorder.

Going back to an earlier post on Virus and neuropsychologic affliction: Is it a coincidence that neuropsychologic diseases “mimic” other diseases - speciflcally those caused by viruses? The need for diversification occurred quickly i.e., at the point when a quickly multiplying population had insufficient gene pool diversity due to geographic isolation and genetic similarity across the group. Why not reach into our ancient viral toolbox – the code formerly known as “junk dna” – to instigate a quick-fix for diversity among one group: siblings and cousins.

We know Bipolar is equally represented across all ethnic and social groups, including Africans. We might deduce from this distribution that the genetic aberration is very old, probably older than the human race. Schizophrenia is known to affect dogs. Does the gene work in the same way in dogs? In Chimps and Bonobos? Dogs and apes live in complex isolated social groups, relying on collaborative (distributed) cognition to coordinate efforts. It's high time to trace this genetic trait backwards.

These traits – which are recognized as useful in limited, specific environments – are now considered a scourge on society. When did we start to demonize these conditions? What turned these peculiar genetic expressions from a late-life inconvenience in early social groups, into a thing to be scorned and shunned once society became more rigorously structured? And what purpose did this demonization serve? Obviously it protects a community – to avoid those with a viral or genetic disorder (do you see the connection here between viruses and genetic neuro disorders?) The similarity in behaviors – despite a different trigger or onset pattern – allows the community to recognize a familiar problem– without shifting gears. The virus itself – or our bodies knowledge of viruses (aka junk dna) made this connection for us. The resulting behavior – fear and avoidance – may have been an intended result.

Now that we understand that these afflictions prevailed for a reason, can we stop blaming the afflicted for carrying and expressing these mutations?

Even viruses have a use, though it is harder to understand. Viruses are shared and distributed (sometimes readily, sometimes reluctantly ) among animal species and even (if you look back long enough) between plant and animal species. When a virus "jumps" (successfully infects) a new group (for example, when it was discovered that humans started to become infected with SARS or avian flue, or with H1N1 – swine flu), it is considered a threat. In fact, the newly infected population acquires not just a new disease, it also acquires a transposon which it carries indefinitely into the future. It acquires the code, or the knowledge of this disease. This "knowledge" confers immunity among some, but not all, of the newly afflicted group. This knowledge serves many purposes – which we are only beginning to understand.

The way I see it, viruses are a communication link between the natural environment and the complex organisms that exist in it. Their simplicity, their primitive traits, their vulnerability, their position at the front line, allows them to function in this way. During times of stress (cataclysmic environmental events, mass exodus of populations into unknown territories, man-made pollution at acute levels) viruses respond and become active. They change themselves, and, in doing so, confer what they learn about environmental conditions to us, through us.

To be sick, temporarily or permanently, is to be actively involved in this communication process. The afflicted should not be feared. We represent the active process of survival – which is never-ending.

Link to article 'Jumping Genes' Linked to Schizophrenia: http://news.sciencemag.org/biology/2014/01/jumping-genes-linked-schizophrenia

Wednesday, January 1, 2014

Prone Comedy, Part 1: The Salon

During a giggle session a friend suggested I do Stand-Up Comedy. I remind her that I can't stand up 'cause of my medical issues. I have Orthostatic Intolerance. It sounds terrible – and it is. Orthostatic Intolerance – it's kind of like being a racist, except you hate: Standing people . People laying down – no problem. But when people stand up, all kinds of things go wrong. I told her would have to do Laying Down Comedy instead. "Well, yeah, you can sit down. You don't have to stand up. Some people sit." I had gone to see her at work at the Ice House once, and on that night both a cerebral palsy and a deaf comedian performed. They were both really funny. And it's true, the palsy guy was sitting in his chair and being funny. At the same time. Hmm. So I wrote a comedy routine about the things we joked about and the conversations we had re: service dogs and autoimmune problems. Not sure when I'll get to perform this, so here is Part I of Prone Comedy

I have a lot of trouble doing two things at once, or even one thing at once, when I'm standing. For example, if I'm walking and having a conversation, I have to keep stopping. "Why do you keep stopping?" It just feels right. I can't walk and chew gum at the same time. I think I was a cow in another life. Big hairy animals: My friend told me she wanted to adopt a hairless dog. A naked dog. You have to adopt them. You can't buy them. They're too much like people. I asked her why she didn't just get her dog waxed – the one she already has. She said she tried, but the salon wanted to charge her, like, $300 for the job. That's what they charge Persian men! So unfair.

I had a Persian boyfriend once. He waxed his chest and back regularly – on waiter's wages! He didn't have a car, or his own place. He slept in a closet. But he had a really smooth skin. At least until the regrow appeared. Then it was like spooning with sandpaper. Industrial grade sandpaper. The kind made out of crushed Garnet mineral. Ouch. There were red shards everywhere afterwards – allover the shoes, the crumpled clothes. But I think it was unfair for the salon to charge him. After all, they get a rug out of the deal! They keep it, too. If a group of them comes in, they get wall-to-wall carpeting. Sticks forever. Anyway, I suggested to my friend that she disguise her dog as a cat. They can't charge that much just to wax your pussy, can they? Just make sure you order from the fixed price menu. "I'd like the Naked Beaver please – performed on this dog."

One time I went to the salon and asked to get my eyebrow waxed. I hadn't groomed in awhile. So I just had a single brow when I walked in, a uni-brow. She tried to charge me for both. I said No, there's just one. Just do the undersides. I'll split it in two later. When I got home, I downloaded and 3D printed a plastic invisibility cloak for the center section. I figured it would fix the hair problem, and at the same time, explain my cognitive deficit. "Of course she can't think – she has a big hole right in the center of her head! Look! I can see the wall right behind her." It's really hard to explain to people that you have an invisible disability. They think that means you keep disappearing – which is kind of what happens . . . Part 2 to follow