Thursday, December 25, 2014

Head pressure? and arrhythmias

Feeling of increased cranial pressure and arrhythmias late in day for two days now lasting several hours at a stretch. Sensation of rapid changes in pressure with change of position. Increased discomfort with prone position. Fluctuating Vision abnormalities, stiffness/pain in neck/upper body, fatigue, confusion, balance difficulty, "whooshing" sound in ears

Tomorrow at GP will skip the Opthomology referral, and focus on Rheumatology and possibly Neurology. Would have liked CATscan WITh contrast and MRI of head in ER (instead of CAT w/o contrast). Also need MRI of ears. Counsellor suggested getting entire genome sequenced, due to similarity between some of my syndromes and those of parents/parents siblings. I will need a powerful ally, no doubt, to procure whole genome sequencing. And an even bigger ally to make sense of it.

Tuesday, December 23, 2014

Afternoon delight/heart party

Tachycardia suddenly kicked in while napping. Minimal relief after mini yoga session. Sometimes rolling on back or rhythmic exercises can help. Short of breath, distress in chest, sharp insistent ache in middle of upper back (slightly to left side). Sudden feeling of extreme heat inside head along with pressure/ache in both ears, sharp ache in right eye, nausea, dizziness, and pain in stomach. Diarrhea 20” after onset. Relief after second time. WTF. It feels like my heart had a party and forgot to invite me. Sinus tachycardia? I got sick on way to the store earlier today in a brand new vehicle from fumes (formaldehyde, industrial adhesives, plastics, etc). Thought I was going to get a full-blown migraine but seemed to recover after 40”. It feels like the lower part of my heart is sucking downward during these events. Potassium, magnesium, apple, water. Hot feeling in head, sharp quick headaches, pain in left leg (back of leg from left hip to back o f knee). No fever.

Frequent Flyers

On Friday they put me in 5B next to a Vet with PTSD and other mental health traumas. He was articulate and intelligent but distressed. He was on the phone with VA hospital when I arrived. He had been arrested the last time he went to the VA hospital, because they had interpreted his words as “threatening” when he went to second floor to speak to admin. He was trying to procure a promise that he would not be arrested if he returned there. He would have to check in the with police first before proceeding to VA admin on the second floor. He has been trying to get admitted on an inpatient basis. Even the police have been helping him by detailing the VA's response to his need for inpatient care. They won't let him in. “You have no idea how dirty they done me” he tells the person on the phone at VA. Apparently he had put out his eye with a pen and stabbed himself in the chest in the past due to unbearable mental distress. He requested a 10-day supply of the meds-that-keep-him-alive (300 mg lithium, 20 mg sequelia) and then went on his way. I wanted to hug him and tell him how brave he was. It's not possible for me to feel sorry for myself; my syndromes are genetic and have always been there in some form or another. I did not give up my useful years to fight an unneccessary war only to enter hell upon returning.

My next roommate: a suicidal, delusional schizophrenic homeless man. He was upset because his leg, which he said was operated on 5 months prior, was infected and had not been properly administered to. He seemed quite lucid to me, though I don't know whether he really had had an operation or if he just thought he'd had an operation. He kept registering surprise at seeing the tech at the foot of his bed, though she didn't move. He wanted her to stop using her laptop (“It's giving me a stomach ache. I can feel it”) He kept asking for food. They gave him cereal and a bagel. They gave him shots to calm him down, then pills after he threatened them and threatened to kill himself if they discharged him without treatment. He wanted to be admitted on an inpatient basis. They weren't having it. Over the course of an hour a series of perhaps 5 very large male nurses/techs were sent into the room. He was given a printed page of “resources” by an admi and finally they were able to escort him out. I started feeling manic because of his increasingly frantic yelling. But I didn't feel afraid of him. I wanted to hug him and wish him good luck. He is so tired of being on the street. He feels he just can't take it anymore.

They had a single med tech facing us in room 5. At the same time she was tasked with keeping an eye on a delusional schizophrenic man who sat upright in his hospital smock on the edge of a gurney in the hallway facing her. He kept up a running diatribe for four hours uninterrupted. He seemed to be resistant to the drugs they administered to calm him down. Only his pitch changed over time.The speed of his delivery was impressive. How does he think of so many things to say? He should be a professor.

Autoimmune Flare up

On Friday I returned to ER for third time in a week. Third bad episode in 3 weeks: slurred slow speech, extreme dizziness, tingling/numbness on right side of head, confusion, chills, sweating, pressure in left ear, bradytachy and rapid changes in body temperature. Unable to walk for about 5 days beyond a few yards. Could not balance even with two feet on the ground. Limbs are weak. Difficulty lifting limbs. I crashed into the counter and fell on my front when they insisted they wanted to see me walk in the ER. They had me do this twice. The first time the resident managed to catch me from the side by grabbing my right arm. Veering to left.

They were not happy to see me back in the ER but were good enough to do head CATscan w/o contrast to rule out strokes. Scan report states: "dural calcification . . . or . . . atherosclerotic plaque in left cavernous carotid artery". I don't know what significance this has. Nurse suggested that I was having a flare-up of my autoimmune disorder. Instructions: bed rest. They sent me home with a cane as I could not balance myself.

Partial return of function Monday/Tuesday. Relying on cane and curb-to-curb transport to get around.

Wednesday, December 17, 2014

Inflammation, fever syndrome, wandering ghosts

On Wednesday mid-morning back to ER via ambulance due to: dizziness, chills, sweating, inflammation/redness allover skin, mental confusion., chest pressure/pain, laboured breathing, shortness of breath, nausea, neck pain, eye pain/wateriness, pressure in eyes, photophobia, and delayed capillary refill in fingers. My temperature and vitals were good and no infection was indicated thank god. They treated me for orthostatic intolerance with 2 huge bags of fluid before releasing me. They said they would run a blood panel but I guess they decided to leave bloodwork until my Rheumatologist visit, which is 2 or 3 months away. On way home: shakey, dizzy, nauseated, uncontrolled movements, stomach cramps, and extreme weakness. It felt as if feather could knock me over; I was weaving side to side and had to brace myself to stand still. Squinting from eye pain though it was cloudy. Two heroin addicts stared at me pointedly at the busstop; they seemed to think I was one of them. Have lost about 15 pounds in the last 3 months.

I got off my anti-inflammatory over a week ago so that the doctors can examine me “as is” (without any medication whatsoever). So I have been running very hot. Feeling of heat spikes inside my head and allover body. Chills, shivering, profuse sweating, and blister outbreak on bottom. The larger blisters bleed inside the skin and look like bruises once they recede, leaving hard layer of deposit. For two weeks we've had pacific storms, wind, chill, and rain ongoing. I have been symptomatic the entire time. Hoping to get relief when dry weather returns.

I am not the only one whose medical condition is exacerbated by the cold and damp. Many homeless crowded the ER today. Several “wanderers”, including a schizophrenic woman who repeatedly wandered into the room I shared today with a cardio patient. Pale with died-black long long hair, she entered our room mumbling incomprehensibly, drank out of my roommate's cup of water, and removed her flip flops. She then “hid” her flipflops in the trashcan inside our room, then walked back out. She came into the room 2 more times to stand before the sink. She was discharged as far as I know without treatment; she appeared back in the ER just 30” later, at which point she was escorted out into the lobby.

There were repeated calls for another gentleman to stay on his gurney and stop wandering the hall, as well as admonitions to patients to stop rifling through trashcans in the hallway. Crazy. I have the distinct impression, given the high percentage of homeless individuals present in the ER every time I've gone in, that it would be cheaper to provide a small efficiency apartment for each of these people than to care for serious medical conditions while they're sleeping in the cold and damp. I can't imagine there could be any improvement regardless of the medical care they are receiving, given the mental and physical stress they are under.

While in ER they asked if I had a primary care physician to coordinate my care. I explained I had to fire my GP due to incompetence and inappropriate behavior, and that I was the only one coordinating my care. My GP never asked for my medical records, although I brought them with me the first 4 visits, and never showed interest in diagnosing my condition. He did, however, prescribe me Fludrocortisone, which, given my history of hypokalemia and Long QT, could kill me. I need to get this removed from my records and ask them to please please stop prescribing medication to a patient with an undiagnosed condition. It is dangerous and irresponsible.

Vision problems

Went to ER Tuesday morning to have my eyes looked at due to: dimness, blurriness, shutter effect on right side, increasing eye pressure, increasing photophobia, and burning prickling sensations in eyes. ER physician said the front of eyes look fine as far as he could see with the tools he had, and no retinal separation is indicated, but I need to go to an Opthamalogist for a proper exam. He gave me a referral to see both an Opthamalogist as well as a Rheumatologist for my autoimmune syndrome. I need to take his printed referral to the “ER Referral Specialist” at my general doctors' office on the 26th, so that the insurance company can process this request. Each specialist request takes about 2 or 3 months before the actual visit. Each referral had to be corrected for mistakes before it was usable. I may try to see the “ER Referral Specialist” on a walk-in basis this week, but I will need to lay down on the waiting room floor as I'm not able to sit up for very long at all by the time I finally get there. I have the distinct impression that my health insurance policy was designed for someone much healthier than I am. I am hoping to stay out of the ER until I can get to the right doctor for the proper tests.

Saturday, December 13, 2014


Floaters suddenly in my field of vision yesterday while getting up from prone position. A “shower” or mild downfall of floaters: tiny dots and long stringy ones. Have not have floaters for over 10 years. Also, since 2 weeks ago intermittent issues: “shutter” effect on outside of right eye (as if black paper keeps creeping into the edge of field of vision).; occluded vision in right eye (fuzzy, dim); intensified feeling of pressure behind eyes; sharp pricking burning sensations (lesions?) in both eyes; and tiny bright white sparks when looking to the side(noticeable in the dark). Likely the burning sensations are caused by the same thing that is causing burning and itching above both eyes, on neck, allover arms and legs, and on back and abdomen. My symptoms are worsening rapidly in the last weeks, particularly with cold/damp weather. Onset of eye problems simultaneous with severe episode (Long QT, paresthesia, spastic movements, chest pain, short of breath)

I called my son's optometrist when the floaters appeared to ask advice. I was told it must be looked at quickly. I have to go to ER to make sure there is no separation of the retina, which must be repaired right away to prevent blindness.

Friday, December 12, 2014

Protein deposits? Head banging.

Are these blisters and skin aberrations Amyloid deposits? Could CAPS (Cryopyrin associated periodic syndrome) or Muckle-Wells syndrome be causing the entire systemic condition (orthostatic intolerance, arrhythmias, peripheral neuropathy, paresthesia, movement disorder, abdominal pain, inflammation, muscle pain, “shock” sensations in muscles and brain, vertigo, hearing difficulty)? I have appointment with the dermatologist to ask them to please biopsy these skin erruptions.

Several red welts appeared spontaneously as I watched in the last 2 weeks. Limbs ached and burned sharply before these welts appeared. Since 2 weeks ago, my skin appears swollen and covered with a network of large red “lace” allover my thighs, arms, and abdomen. Itching, burning, sharp pricking sensations. Such welts have appeared in the past on my abdomen and lower back. These are vertical welts that appear spontaneously under the skin, with no surface abrasion whatsoever. They usually measure about an inch in length. Shins are covered with pattern: pupae, large light brown “stains”, and white dots and lines are etched allover the surface of my skin on lower legs.

We've had two big storms come in in the last two weeks, and the cold damp weather always triggers skin outbreaks, abdominal swelling and pain, diarrhea, headaches, neckaches (cervical). Additionally my arrhythmia has been kicking in at the same time as these attacks are initiated. One day before the last storm broke I was unable to sit up at all, due to the distress triggered in my chest, which presented with paresthesia and spastic movements. I was turning around on the ground, trying to sit up but slumping over each time instead. Short of breath, difficulty speaking, pressure in chest. These cardiovascular events have been lasting about 40” each time they have occurred in the last 4 months (with minor symptoms continual or recurring). Repeated sharp pains in right inner ear on the same afternoon sustained over hours (waned over 3 days).

The shock sensations inside my head and body were so bad yesterday during an attack that I started crying from the pain and distress. Spastic movement sensations were emanating from my abdomen out to periphery. I have the urge to bang my head against the wall repeatedly whenever these “brain shocks” occur. I fantasize about the instant relief that would surely be delivered if I could just give it a good sharp blow. It is an aggravating sensation. I want to dash it out.

Thursday, November 20, 2014

Skeptical Doctor

I saw Dr Tacoma yesterday for my neurologic symptoms: spasms, jerking, chorea, speech difficulties, choking, cognitive deficits, numbness, paresthesia, edema, muscle pain and stiffness, shock sensations, difficulty urinating. However, she surmised that my condition is “not neurologic.” I asked her how a movement disorder could not involve the nerves? Aren't our movements and sensations controlled by nerve impulses coming to and from our brains? Dr. Tacoma did not answer my question. I asked her again, pointedly: “How can uncontrolled movements and numbness not be a neurologic problem?” I scrutinized her eyes when I asked the second time, because I was very confused at this point and not a little frustrated. She said that the pattern I am experiencing does not describe any neurologic disorder, and she is quite familiar with them all.

I'm pretty sure Parkinson's, ALS, CMT, and Huntingtons all cause exactly this type of condition, but I did not mention it to her. I asked her what could be causing these symptoms? She did not respond. She said “I have some suggestions for your GP which I will send to her. For example, I would recommend you see a Behavioral Specialist”. I asked her “In what ways do Behavioral Specialists treat movement disorders?”. Dr. Tacoma did not respond to this question. She said, instead, that it didn't make sense to send me for expensive testing given that she didn't recognize a pattern that indicates a specific diagnosis or treatment. I am confused by her inability or refusal to respond to basic questions about my condition and treatment. I have to question if her refusal to engage in a meaningful discussion may be caused by prejudice toward mental health patients, simply due to how common this type of prejudice is among medical doctors. I don't know how else to interpret her reticence.

The doctor asked if I have “evidence” of the movement disorder. She agreed to see me again when I have evidence in the way of either videotape or a 3rd party description of my severe episodes.

I don't think I can operate a video camera while having an attack, but I could return in the summer. When it's hot, and after physical exertion, I am invariably symptomatic. My fear is that if I go back to Dr. Tacoma in the summer by bus, I may have to go to the ER before I get there. The last time I took two buses in the heat was on May 2; on that day I had to go to the ER for hypokalemia, Long QT, and paresthesia before I could stand up and return home. I am terrified of these attacks and would rather try to avoid them.

Friday, November 14, 2014

Drunk Horny Doctor

The GP I was assigned, Dr Mohamedy, was inebriated today at my appointment. His body reeked of alcohol. I wasn't actually upset by it, but I was very annoyed with improper touching. He repeatedly stroked my right nipple with his wrist while holding his stethoscope in place. I can't wear a bra because they trigger severe headaches and pain (due to labile hypotension) but that is not an invitation for anyone to stroke my tits. He also lingered at the side of my lower abdomen after palpitating my abdomen, tickling and langorously stroking one spot repeatedly. I yelled at him and told him to “stop touching me that way”. I asked him why he was touching me in that manner. He said he was “checking for tumours”, at which point he changed his movement.

When I got home I called the clinic and asked to switch to a female doctor. I normally always ask for a female doctor because of this type of problem. It takes longer to get an appointment, but I don't see an option. I also left a message for the clinic director so I can let him know about the problem.

Saturday, October 11, 2014

Two days, two episodes

Wednesday was warm and my arrhythmia kicked in once the heavy machinery outside started up. Noise, traffic fumes, and stress all act as a trigger for Long QT. I was already at a deficit when I left the house to walk to an errand. I got distressed on the way: confused, short of breath, spasms, chorea, facial contractions, stamping, and the overwhelming urge to bash my head against the wall repeatedly, as if the percussive effect would stop the distress in my head. It felt like explosions or shocks going through my brain. They were kind enough to bring me a wheelchair to bring me from the waiting room into the doctor's office, as I was unable to walk until I lay down for an hour in the air conditioned exam room. I recovered somewhat after eating. More and more the seizures and movements are coinciding with orthostatic intolerance and Long QT symptoms – as if lack of oxygen were triggering the neurologic episodes. I have always had orthostatic intolerance as well as Long QT type response to stressors. I have always had numbness, stiffness, and pain in feet and hands. But the movements and seizures are more recent. They began slowly a few years ago, and escalated sharply after a traumatic event May 2013.

Friday I had a different attack, with viral-type symptoms. Thursday p.m. it got cool and I felt feverish. Had diarrhea 6 times Friday a.m. Chills, weakness, exhaustion, general malaise. Vicious prickling/itching/stabbing sensations in: feet (bottom), joints (top of left hand); painful cyst outbreak. I treated new cyst topically for first time with indica oil on a whim, since the cysts involve my nerves and can be very painful. It suppressed pain for about 6-8 hours and seemed to calm it down. Yay. Also took leftover antivirals for cysts and itching (Acyclovir 2x/day for 2.5 days). Did not make it out the house except for short breaks. I have been having these cyst/malaise episodes since age 12, often in response to changes in weather (damp, cool, windy weather especially) and topical stress (friction from hats or underwear; topical beauty treatments, etc). It can last for hours or days. I believe this episode was typical of Dysautonomia (that is, it is one type of standard Dysautonomia episode).

Sunday, September 28, 2014

because I am like this

Video documentation of Brian Goldfarb's Global Tourette Project includes interviews with a young charismatic* Argentinian man who suffers from neurologic disease, including severe Tourette tics. Chaotic unpredictable limb movements are almost constant with him; “inappropriate”** verbal outbursts are common. He was asked what is the most difficult part of living with his disease. His response was simple and devastating. “I have to be alone – because I am like this.” I burst into tears. When I watched the video I had just made peace with the reality that most people were now off limits to me, and that I would be alone because of my medical condition. It is just not possible for the average person to understand and it scares them.

Strangely, it is not my worsening neurologic tics that make me feel this way. Rather it is my autoimmune and mental health symptoms that distress me when I am around other people, because the suffering they cause is invisible but acute. It makes any social interaction seem surreal. It feels as if a clear heavy wall divides me from everyone else, because I am continually distracted by symptoms, episodes, and attacks that make it difficult or impossible to comprehend what is going on around me. And yet these terrible distractions are invisible to everyone else.

In comparison, the uncontrolled movements seem minor. I have been intrigued by my own jerking, spasms, stamping, chorea and tics. One hot day after over-exerting myself my right leg began stamping rhythmically and dramatically like a counting horse. I watched it bouncing. I found I could hold my leg down to stop it, but otherwise it just went on its own. It hurts when these spasms occur; it feels like shocks are going through my brain and body, and the muscles get hard and stiff. But the movements themselves are a relief – like a quivering cough that needs to burst out. Stretching out the spasming muscles is a relief; suppressing the movements in any way is difficult, distressing, and temporary.

The uncontrolled movements are a relief because they feel like a manifestation of the distressing little shocks that have interrupted my thoughts for a long time. Only now these shocks run through my body instead of just my brain. The visible manifestation of this disease is a relief to me because for the first time people can understand that I am being interrupted against my will. I am forever being interrupted against my will.

*I found this young man captivating, but I don't think the average person would perceive him this way. Which is a shame. Maybe I should call him.

**There is no such thing, really, as an inappropriate utterance. Every utterance, in its own way, is inappropriate.

Thursday, August 7, 2014

I met someone in the ER today

I met someone in the ER today. Not face to face. In fact, I made a point not to look at him when he was discharged. I didn’t meet him, but I peed right next to him. I could not feel or move my legs when I came in so they brought a potty into the room for me, and I held onto the bed rail and peed right next to the thin curtain that divides the room.

I didn’t have to look at him. I felt I already knew him just by listening to him in his mania. Despite the disjunctures I recognized the mechanisms he uses to slip through. I recognized how easy companionship comes when you have people’s attention. But that companionship – when you are in denial, and narcissistic – is not friendship. He is young. But not too young to know he can’t rely on these thin tricks much longer. Your mania is no longer amusing to the people around you. You are exhausting, and you are exhausted.

There are so many threads cut, waving in the breeze, tantalizing. Each frayed connection seems minor, but becomes sharp over time, until you are left stranded on the other side of where you were quite sure you were meant to be. “Where am I?” he asked, “But how did I get here today?”,and “What the fuck’s going on?”.

I wondered why every time I was brought to the ER this year, there was a Bipolar or schizophrenic next to me – invariably a confused person with multiple indications who did not wholly understand why they were there. I speculated the ER’s were full of them these days. Then I realized: Oh wait, I’m bipolar! They put us together in one area so they can watch us. Duh. I did disclose this information to them after all (most reluctantly), and it's in the system by now. In my mania, I am unaware of my mania. But they are not. While the tech was testing my standing HR, I burst out laughing. I asked the tech why they put the Bipolars together in one area. He looked surprised that I asked. I asked if it was because we are unpredictable. He gave me a diplomatic answer involving a need for observation. I imagined there was probably a marshall nearby with a weapon, assigned to appear instantly in case of an episode. I tried to behave as normally as possible, or how I imagine normal people to act in such a situation. I tried to behave well. I resisted engaging in conversation with my roommate, because we were both manic, and we might have had a jolly good time.

They made him pee into a pan just on the other side of the thin curtain dividing the room. He then yelled over to the the tech: “Hey, how old do you feel?” The tech responded with a dull “thirty-five”. I thought the question was brilliant, and laughed and said that I feel like a hundred and five, even though I am only fifty. He laughed and said he felt like he was “a thousand” though he sounded 22. He sounded 22 in spite of the vomiting, the drinking, and the smoking. He joked with one of the nurses about the state he was in when he was admitted previously. He described how he was crying so hard that it made him vomit, and how he’s had these episodes since he was 5. His lack of inhibition about his psyche and body was endearing. I momentarily imagined he and I having hot sex together, right on the ER bed, right in earshot of the tech who sat facing us in the hallway.

Once I was topped off, and they removed my IV, and gave me my discharge papers, I walked out – past the gurney where my roommate now sat, waiting, for 3 policemen and 3 techs to transport him back to the County Hospital, where they will decide whether he will be discharged, or whether he will continue to be treated for the episode during which he was arrested. They will decide. I walked past him a free person. It is difficult for me to walk; he is able bodied. But I am free, and he is not. But for the grace of god I would be imprisoned too. A high-functioning Bipolar instead carries their prison with them wherever they tread. It becomes heavy over time – perhaps so much so that you want someone else to take over guard duty. Like when you are crying to the point of retching, helpless to stop. It feels like spasms, but it drags your emotions along with it, so that you are stuck between the emotion your heart elicits, and the physical response that consumes you. Back and forth, until you are drained and can’t feel anything at all anymore. You stop responding and you stop caring. Someone needs to guard the thin curtains that divide the room.

Good experience in the ER today

I had a very good experience in the ER today. I asked to be taken to the research hospital and this time they were able to accommodate me. I began seizuring this morning when my arrhythmia kicked in. I wasn’t able to correct it. I have been using D-Earth throughout the day and night to keep my electrolytes up. But this morning I took more than the usual amount and started seizuring anyway. At that point I wondered if I was hyperkalemic, so I had to get my potassium level measured right away, as the symptoms of too-little potassium and too-much potassium are identical: an imbalance in either direction will trigger an arrhythmia, then seizures, cell death, organ failure, and finally cardiac arrest.

My QT phase was not prolonged when they measured it – the arrhythmia subsided after about 35", before ECG hooked up in ambulance. As I was extremely dizzy and unable to move my limbs, we proceeded to the ER. While there, I was surprised they had the tech measure my standing and sitting heart rate, in addition to prone. I had told them I was orthostatic intolerant, but I didn’t expect them to know what I was talking about. It was a good thing they measured it: 40 pts. increase upon sitting (from prone position), and 40 pts. increase again while standing (from sitting up). The maximum difference (80 pts) is double what Dr. Ahern measured when I was on the tilt table in December 2012 (though I imagine the tilt table would exhibit less variation under the same conditions). It could be the orthostatic intolerance episodes are triggering Long QT, as standing has now become a significant physical stressor. Normally OI would trigger tachycardia. They administered saline without my having to ask them (even before they confirmed orthostatic intolerance), and gave me a liquid oral solution of electrolytes after finding my potassium low. They did not complain at all when I refused the potassium pills, since potassium gluconate triggers diarrhea. (Potassium was low at 3.6 surprisingly, after a full tablespoon of D-earth between 4 and 7 am this morning.) Discharge instructions: No more caffeine ;-( Also I got a reference sent to an arrhythmia center, where I am supposed to report asap. However, the physician did not know whether they accept medi-CAL, and the state has not yet processed my application for insurance (submitted in December). So I am likely a long way away from the arrhythmia center.

The hospital did everything perfectly, actually, and quickly. I was impressed. They also did a great job when I was there in January with vomiting/dehydration. The experience I had today was a far cry from the one I had at S.M. Hospital, where they refused to administer fluids, electrolytes, and 02 as requested, which would have stopped the seizures. Instead they sent me home 3x while seizuring, and sure enough I came back 3x with the same problem. I think it is safe to say: go to the good hospital, even if you have to wait. But at the same time I can see now how it happened. The first time I went to S.M., I insisted I had a neurologic problem, because I was experiencing headache, neck pain, and upper body pain in addition to the seizures. But these symptoms eventually subsided* while the arrhythmia, hypokalemia, and seizures persist. They did a CATscan unnecessarily, which probably annoyed them – but it was a great relief to me to get a normal CATscan because I have migraines and vertigo, and should have had one long ago based on my diagnosis.

My Bipolar diagnosis also makes me suspect to healthcare professionals, as most of them assume that all your problems are “in your head”. In fact, mental health patients typically have multiple medical conditions, and they are less likely to get diagnosed and treated for their non-psychologic medical conditions compared to other patients. (I don't know whether this statistic takes into account the general problem of lack of access to health insurance by mental health patients, or if they surveyed only those with insurance)

At the same time most healthcare professionals probably don’t realize that just going to the ER will trigger a hypo manic or manic episode in a Bipolar patient because of the excitement and because of the attention. The attention also triggers narcissism in patients who are delusional. It is easy to misunderstand this response. It makes it seem like the patient is there to get attention. In the ER today they were smart enough to use this talkativeness to gain information without becoming annoyed by it (no small feat). Social situations trigger manic episodes in Bipolar and Schizophrenic patients. And there is a more crowded, intimate, physical, and pointed social interaction than in the ER?

*     *     *

I asked my son about how I was treated at the corporate hospital. He accompanied me there the second time. He informed me that they were annoyed with me because I was “hysterical, swearing and screaming at everyone” I came in contact with, and berating the staff loudly the moment they left me. I have some memory of these interactions. I remember suffocating and jerking from seizure, and I remember abject terror. I was afraid to fall asleep for 2 weeks after that, and the lack of sleep triggered a manic phase. I considered jumping off the bridge in between hospital visits, because I was so afraid of suffocating to death in the ER. It feels like the seizures in April (9-12 hours/day over two weeks) caused brain damage. It feels like entire chunks of my existence are missing.

* I suspect that the headache, neck pain, upper body pain, abdominal swelling and pain, as well as diarrhea, anal itching and bleeding were caused by parasites, possibly blastocytis. The D-earth has cleared these symptoms up to a great degree. I suspect any lingering symptoms in this department are being caused by IBS (associated with Dysautonomia).

Sunday, April 27, 2014

Probes from a parallel Universe

While in the ER I became delusional. I felt so heavy, so tired, after struggling. And instantly, as soon as I drifted off to sleep, tiny pulses tapped me and zapped through me, testing me – I was sure of it.. They came up from the bottom of the hospital bed. These signals knew how to move. The entered me through the sores on my back, which were prickling and zapping like they do. Only this time the electricity conducted by the sores and nerves became a portal for lightning fast nano-probes from the multiverse.

In my minds eye, through which I believed I observed these proceedings, the sores on my lower back burst into tiny wire-like transits to accept these probes. I could feel the electric stabbing and burning that gears up whenever I'm symptomatic. Only this time my heart's helter-skelter signals found an interested party. They entered almost instantly, right when they sensed an opportunity. The pulses are square and can travel through parts of our body easily as if we were no more than a continual part of the bigger universe. But other parts of us slow them down. They travel in parallel pathways, in one dimension only for efficiency. Each one keeps information of the path they took and the depth they achieved. This information can be reassembled later in another location.

These tiny pulses sensed my waning energy. I had succumbed to whatever fate awaited me in that shitty plastic vinyl and fluorescent room because I was all out of options. I was spent and at the mercy of whatever or whomever happened to be there. All this occurred in an instant – the instant when I allowed my brain to succumb to sleep. I reeled myself back in and woke up. And I realized: we don't have to go and find manifestations of the multiverse. It already knows exactly where we are and what we are. But it doesn't give a fuck about the who part.

The Patient Satisfaction Coordinator

Went to acupuncture 7x since the ER visits in order to fix my arrhythmia, which was in overdrive all week. Sheer terror: racing heart for up to 9 hours at a time, reduced oxygen due to heart dysfunction, feeling of suffocation, spastic limbs, kidneys unable to retain anything, unable to sleep. My ER discharge papers recommend acupuncture and massage as the best treatment for Long QT Syndrome after potassium, which I have been loading along with healthy food, after getting my nausea under control. The arrhythmia calmed down after several consecutive days of acupuncture treatment, but my brain is on fire and I am becoming suicidal again. Endlessly thankful for my acupuncturist, who has been working daily without pay to restore my heart function. I will pay her in May for the April treatments, then will be behind again for the Month of May. Even though the ACA is supposed to prevent discrimination against any licensed health care practitioners, I am pretty sure they will not reimburse me for these services, because they list acupuncture as uncovered.

I went to the clinic last Monday with the ER Physician's instructions re: follow-up visit post-ER. But the clinic would NOT take my Medi-CAL card and I had to leave without the ECG and thyroid test specified by the physician. I felt sad when I left the medical center without receiving services as specified. Worse than sad. The stress made my arrhythmia kick in, and I lost the progress i had made in managing my medical condition on my own. Big mistake.

Despite conversations in person and by phone with 12 different state employees, including at the Medi-CAL office, the Family Resource Center, and the SSI office, not a single employee was willing to help fix the problem with my insurance card. I submitted my application in November 2013, and I got verification that my application was complete in December 2013. In February I was told they needed additional documents, which I promptly submitted in person at the FRC. While there, I was informed that my insurance was now "authorized" based on the completion of all assessments/documents, and I was told my card would be switched on shortly. Two months later, it is still not working. Each person I spoke to refused to help me with my problem, and instead informed me: Not my department. We don't handle that. A total of 12 state employees passed me off, insisting they were not the one to help with my problem. Even my case worker, David Lang, insisted that my case was no longer his responsibility, because he had completed the only portion for which he was responsible. He also told me a lot of people at the Medi-CAL office were quitting due to being overwhelmed with work.

Last week the Patient Satisfaction administrator from the Hospital contacted me to ask if she could help me with a temporary 2 month Medi-CAL insurance policy. There were repeated conversations in the Hospital about why I was not able to visit my Cardiologist, Neurologist, or GP this year. So, next week, I have to take a cab back to the hospital to sign a piece of paper, authorizing Linda to submit an application for a Temporary Medi-CAL insurance policy for April/May, until I have a chance to "work out" my problem. Linda told me that the Supervisor at the FRC is the person who can "switch on" my policy. Strangely, while at the FRC they did not bother to tell me this, nor did they inform me I could apply for temporary coverage.

Does anyone else think it strange, that the administrator who offered to help me with my State insurance policy is actually a Hospital employee? How many administrators do we really need to administer a basic health insurance policy? Apparently: 13. Twelve stressed, untrained state employees who don't know how their system works. And one highly paid corporate administrator who does.

I suspect fully half of our health care costs go to these troupes of administrators, who serve no purpose other than to confuse a simple process. This confusion keeps HMO's, hospitals, and insurance companies in control of the process and the money that flows through it. Administrators and healthcare providers have no incentive to become efficient; it is inefficiency that allows them to control and bill for diagnostics and procedures. I suspect half our healthcare costs are eaten up by this racket. It is the patients and doctors who are suffering. Shame.

The health care industry in the U.S. is terrified of (the increasing accessibility of) genetic tests: they are afraid of losing control, and therefore will not authorize DNA tests. Patient ignorance works in the system's favor. The look in doctors eyes when you bring up the connection between familial genetics and a specific medical condition: sheer terror. Not just because of losing control, but because: genetics is complicated (though not nearly as complicated as our healthcare system).

The other problem with high medical costs in the U.S.: We are the only country with universal healthcare that does not attempt to control the costs, allowing pharmaceutical companies, HMO's, hospitals, insurance providers to charge as much as they please. This practice favors the wealthy – those able to pay for expensive policies and out of pocket uncovered expenses. Genetic tests, for example, are not covered by health insurance companies in the U.S. and they are very expensive.

The health care system in the U.S. is set up to benefit the wealthy, who are likely to receive unnecessary tests. Meanwhile this same system deprives the poor and sick, who regularly do without needed tests and services, ensuring that they remain dysfunctional and poor. Our economic system follows this same model. We are being split down the middle. But we have something in our favor: there are more of us. Many more. We may be sick, but we are not dumb. It is just a matter of organization. It may very well be that the information revolution and control of our own genetic data will allow us to turn this relationship on its head.

Friday, April 18, 2014

Long QT Syndrome

Had to call 911 for second night in a row on Thursday after becoming distressed again with the same symptoms. This time they were able to locate the problem: prolongued QT phase on ECG (Why did they not do ECG on first night? Male nurse seemed very uncomfortable setting up ECG.) Prolongued physical exertion triggers symptoms, as does electrolyte depletion from diarrhea, vomiting, and nausea/lack of appetite. I became woozy both nights and felt as if I would black out. I was intermittently confused and felt outside myself. Sharp headache and upper body ache occurred at same time. Legs and arms numb; dragging both feet. I seemed to be going downhill fast. Blood sugar and vitals normal en route to hospital.

Long QT syndrome is usually caused by a congenital heart defect. There are too few (or inefficient) ion chambers in the LQTS heart. Some pharmaceuticals can also cause it. The physician told me it was important to get another EKG in 2 or 3 days, to take potassium, and get thyroid checked. He gave me a referral to the clinic near the hospital. I can't get there on my own as I am no longer able to travel, and I don't know if my Medi-CAL card is working.

Long QT syndrome would explain the type of symptoms I had after exertion and stress events the last two days, as well as life long irregularities such as inability to sustain exercise over long periods, cognitive difficulty, behavioral problems, skeletal irregularities, immune deficiency, chest pain with headaches and vomiting, as well as seizure-type responses (visual auras, spastic peeing and voiding, tremors). IN the ER I lost consciousness several times, completely lost track of time, and at one point was laughing and giggling for reasons I do not comprehend. My limbs were spastic and jerking upward at one point. At one point I told my son that my dying body was being tapped by a parallel multiverse for its fading but powerful energy. Go figure.

There is a high rate of sudden cardiac arrest associated with Long QT, as it leads to Ventricular Fibrillation if left unchecked. *Why did they release me from the Hospital without stabilising me? I went home with this dangerous arrhythmia intact. Implanted devices are normally used to correct this problem.

Today I am planning on laying down. My poor heart. Even standing to load the dishwasher made me sick and confused this morning; I had to quit. Thank goodness it's Good Friday, and my baby, who went with me to the ER last night, doesn't have to go to school. Poor little man.

Thursday, April 17, 2014

Something just doesn't feel right today

Symptoms continued to get worse today: numb legs, dragging feet, aching eyeballs, clammy sweating, ache in neck, headache, dizziness, confusion, nausea, arms numb, arms falling asleep spontaneously, anxiety while laying down (normally anxiety only presents standing from adrenaline/low blood pressure). Finally went to ER around 8 pm as I had the feeling that something was not right.

CAT scan was negative, vitals all good.

In the ER tonight overhead discussion from neighboring unit: "How did you plan to pay for this tonight?" and "Did you already apply for your Medi-CAL?"Seemed to be the topic of conversation all around. Lots of confused people. One guy was diabetic. Another guy got injured. The one next to me got some kind of jab and screamed. In my case they seemed quite annoyed that I was there with needs they could not meet (MRI, blood work, spinal tap), until they understood what I have been going through trying to get the proper tests done. My Medi-CAL insurance # did not allow them to bill for services tonight, so these visits are being designated as "self-pay", and the retroactive Medi-CAL will need to cover it, as coverage was supposed to start Jan 1. My Medi-CAL insurance has been processed, approved and authorized, but not switched on – despite the fact that the Status Department shows my insurance as currently active.

When the physician checked me out of the ER he was more sympathetic. He told me to just keep doing what I am doing to get the help I need. Namely, "Wait." I was given directions for follow-up tests, but can't schedule follow-up until my insurance number is activated. He said I could come back to the same ER if I needed help. I thought that was nice of him to say.

Wednesday, April 16, 2014

Brain on Fire

Ran out of anti-inflammatory meds 2 weeks ago, and they've worn off completely. Bad day today. Had tremors, numbness, and spasticity in the a.m., and burning sensations allover. Went to bed after breakkie, then walked to laundromat. Was going about my business, when a woman accused me of stealing "her" laundry cart. Naturally, I launched a stream of obscenities at her, made fun of her, and imagined slamming her head repeatedly against the washer. It felt like my brain exploded, as if it were suddenly on fire. It took me 2 hours to calm down. After these incidents, I feel confused, shaky, exhausted, and depressed. Also terrified that I will do something terrible while "out of my head". Sorry, lady at the laundromat.

My legs were completely numb by the time I walked home. I cried and cried, and banged on my legs and head, as if that would make them return to life. How is it possible for legs to be numb and hurt at the same time?

I have been wondering if it is possible for my medical condition to be caused by my forceps delivery. I found out that 56% of forceps-delivered infants have bleeding between the skull and neck, and that this injury can lead to bacterial infection, including meningitis, as well as neurological problems later in life. Such a neck injury could explain my: head and neck pain; headaches with vomiting, sensitivity to light and sound, "electric shock" sensations in neck; and even the pseudobulbar effect (inappropriate emotional outbursts or responses) I have struggled with since I was a little child. "Why are you so angry all the time?" my little friends would ask me. I didn't even know I was angry – in my head, I felt "normal"; I didn't know any better. But it made me sad when they avoided me after these episodes.

Thought about going to ER to ask for a Spinal Tap and anti-inflammatory, but surely they would laugh at me?! And if it is meningitis, it is an old infection. An old friend, as it were.

Tuesday, April 15, 2014

Dear Joe (When the rainbow is not enuf)

Dear Joe: I can only speak for myself; each individual responds differently to treatment and it can take time to find treatment that works for you. Bipolar is hard to treat because you are treating two different conditions and it can flip flop quickly. Think of it as taking care of a baby: you can thrive, but you will have immediate needs and you will need to be patient with yourself. But unlike a baby, Bipolar never grows up. So it is constant work.But I have made it to 50 and hopefully, one hour at a time, I will make it to 100.

I have had success treating suicidal and manic phases with acupuncture (which stimulates our natural chemical responses) and indica (non-THC cannabis). Cannabinoids are a natural anti-inflammatory and neuro-protector. Suicidal phases are linked to inflammation. MS patients experience suicidal phases more than Bipolar patients for this reason. Sugar produces inflammation, so avoid sugar, starch, and alcohol (starch converts quickly to sugar, and alcohol affects how you process sugar). Whole grains have an anti-inflammatory effect (unlike refined grains)

Make yourself laugh, even if it's contrived. There are yoga classes which engage all our gestures of laughter. They say it works. Watch a funny show. I like to tell jokes and make fun of people and dogs. I like to make fun of myself.

Oxytocin is apparently fast-acting solutions with minimal or no side effects for most patients, though these might be hard to access. I understand one company makes an oxytocin nasal spray that can safely be used on an as-needed basis. Keep in mind our bodies produce oxytocin naturally. But some of us are deficient in these natural responses due to structural and wiring differences.

Ketamine engages the cannabinoid receptors in our brain. We are not talking about "Special K" off the street. Rather in a strict medical setting it is infused used for one-time positive changes in the brain – a switch as it were. Canada has published research online on these studies.

Cognitive Behavior Therapy has been very helpful to me for managing daily life. I have been working with counselors who are graduate students in Psychology. Many schools who offer psychology degrees offer such student-provided services, which are supervised by professionals (who in turn contribute to your treatment!). They generally work on a sliding scale basis. I paid $15 per 2 hour session in the past. I have found graduate students to be much better than professional Psychologists, because they are very motivated to graduate and to have success with their first patients. They are also up on the latest research and techniques, unlike professional MD's who seem to coast on out-dated research and glib responses.

Right now I don't have access to any medications or treatments, as I am waiting for my health insurance to come through. In times like this, lots of sunlight (preferably in the a.m.) and my dog are a lot of comfort. I started running again also to help with my mental state. I can only run a few blocks at a time, but it helps. Yoga has also been helpful in calming down.

I find it helpful to participate in online discussions with others experiencing similar struggles. It can be lonely and frustrating to be surrounded by healthy people who cannot comprehend what you experience all day, every day, and who insist that you need to "snap out of it" or "it's all in your head". Science has established consistent physical differences between Bipolar brains and healthy brains, as well as chemical deficiencies, and differences in thought patterns.

Keep trying and don't give up. Remember this is a medical condition and it's not your fault. There are promising recent advancements in individual genetic-based treatments, which can pinpoint your chemical imbalance and address it, rather than carpet-bombing your brain with unnatural chemicals (which produce side effects and are addictive).

It may seem like the modern world was not made for people like us, but really we just need to construct our own world – just like healthy people do. Successful people invest heavily in the narratives they create about their own lives; they are delusional in a way that helps them. Just go to any Facebook page to find examples of delusional constructed personal narratives. Think of it as a game; we may know better, but it doesn't mean we can't benefit from the same tools.

Sunday, April 13, 2014

Boys, Girls: Get over it – Free your boobs once and for all

Concern is rising about the link between breast cancer and bras – see article on how bras affect lymphatic system

I had to stop wearing bras years ago due to Sinus Tachycardia – bras produce instant, debilitating migraines if your blood flow is compromised. I experimented with a variety of alternative solutions (strapless bras, racer-back bras, taped-on cups, hiding inside the house) and failed. One day, after a prolonged session of heaving on the side of the road in agony from the distress caused by my bra, I had to finally acknowledge that I just had to give them up. Period. My Sinus Tachycardia is caused by an incurable condition (Dysautonomia) so this decision was quite final.

But why is it hard to go braless in this country? I'm thankful for small tits as I don't have any physical discomfort when I go without. The real problem lies, as always, in social attitudes. It would be easy at this point to say "American men are pigs" because of how they react, comment, and assume whenever they see a "sign". Even if this "sign" is not aimed at them, male brains seem to assume that any indication of intact sexuality is intended for them. I sometimes find myself shielding my girls from unwelcomed stares with my bag or other items, because I really don't think they should have to put up with that shit. They just want to go out for a walk.

But the most pointed stares (no pun intended) come from women*, who will scrutinize your breasts longer than men. To men, untamed breasts are a sign. But to women they are a threat, and so are intimately perused in an effort to determine exactly how dangerous you really are. "Here comes trouble" or "Watch out!" are things women will say when they see a braless women, as if a binding piece of clothe changes the way a woman's intellect operates. (Hint boys and girls: It doesn't. Or if it does – you fucking deserve it.)

Men, Women: Get over it. Boobs are functional body parts that deserve to be free and healthy. If boobs are threatening to you, or if you just cannot handle the site of boobs walking down the street, consider moving to Russia or Canada, where a cold weather climate ensures that breasts are amply covered – at least part of the year. Your frozen mind will thank you. As for the rest of you: go take your boobs for a walk.

* I am not counting sunglassed men in this equation, who are true champions when it comes to long-term staring.

Tuesday, March 25, 2014

Ghost Plane: A short story inspired by recent events

"Are we there yet?" Ming asked. He stared out into the pitch black, knees pulled up to his chin, shivering.

"Not yet. Soon." his Mom answered, squeezing his shoulders, her chin on his head.

"Are they going to turn the lights back on?"

"In the morning. It's time to sleep. That's why they turned them out. Just like we do at home."

"But at home I have a nightlight. It's too dark!"

"Oh, I guess theirs broke. Here's our light." She directed her mini-mag light against the back of the seat in front of them, her hand forming a barking dog. Ming stared, thumb in mouth.

"I'm hungry"

"We'll eat soon, at breakfast. Now we have to sleep". She stroked his hair until Ming nodded off. As he did so, he felt as if he suddenly drifted faster and faster, careening fast as light.

* * *

He woke to the sound of conversation. It was light, and a man's drole face stared blankly at him from the seat before him. It annoyed him. The blinding bright light streaming in annoyed him. In the cabin card games were being played, cocktails were sipped, and dinner was being served. Ming squinted his eyes at the steaming tray of crab legs being lowered onto trays across the aisle. He breathed it's warm briny scent.

"Hey! It's supposed to be breakfast!" Ming said.

His Mother sat beside him, thumbing dreamily through an in-flight magazine. She raises her eyes to him, then lowers them again. "Aren't we lucky though. Eating like kings." Sure enough, a clay hotpot is set before Ming. The steward lights a flame underneath the hotpot. "Space noodles!" says the steward.

He shoves the lid aside to peer at noodles, meat, and broth jiggling inside. He eats hungrily and loudly. When he finishes he picks up the lid to place back on to the pot. Startled, he sees the ocean below right through the bottom of the pot. He stares. The ocean sparkles in the sharp light below. "Hey," he says, "where's the land? There's no land yet!"

His mother peers over at the newly discovered portal. "Oh yeah. I see. I guess that's what they were talking about a little while ago. The captain came on and said they can't see any land; they are looking."

"Soooo, they can't find any?"

"Well, keep looking and maybe we will find it."

"I have to find it?"

"Someone has to find it, right?"

Ming scans the waves below. But the waves all look the same and they are so tiny. He doesn't know where to look. He scans right to left, from the bottom to the top, as the ocean traverses beneath them. When he tries to focus, his eyes quickly tire from the bright light. "I need my sunglasses Mommy"

"Your sunglasses are in our suitcase. And you know where our suitcase is!"

"In the ocean!" His eyes are wide with mirth.

"In the cargo hold, with the other suitcases, and the naughty children." She smiled.

"Can we go down there!"

"Maybe after lunch. After they clear the aisles."

"You mean breakfast. We just ate breakfast."

His mom considers his statement, then continued with her magazine. Ming squinted his eyes as he munched on chocolate covered strawberries, the red juice dripping. The liquid drips down into the claypot-portal. Instead of splashing onto the surface of the portal, the liquid crystallized and burst. Red shards shoot down toward the sea and disappear. Meng wonders if some things can go through the claypot, and other things can't.

"This is nice," his Mom says, peering down at an item in her magazine. It is a full-page item, which means it is special. Ming recognizes a pontoon boot. He scans her face, unsure what interests her about the boat. "What do you want that for?"

"Well, the thing is, you never know what you will need and when" she replies snootily. Subsequent pages display: real estate, animals, rocket ships, boats, and food of all kinds, both fresh and prepared.

"Could we get this." Meng leans over and puts his thumb on a 1/4 page add displaying a bouquet of chocolate flowers exploding out of a candy house.

For reasons she doesn't recognize, the sharp shove from his little body annoys her terribly, as if her son were no more than a tumor embedded in her side. Even as she chases away this sensation, a portion of her boils and threatens to shoot right through the roof.

"You'll get fat" she reminds him, satisfied with her cruelty. From the catalogue she orders a prefab single family house, which can be assembled in a single day using simple tools. In response to Meng's questioning look, she opens her eyes wide and shakes her head to put a kiss on him.

* * *

They are walking through the cargo hold looking for their suitcase. "I want my coat and my iPad" Meng says, scanning the stacked bags. "What? I can't hear you". The tiny high pitched scream of the engine and the interior roar cushion their speech.They walk past a row of large plastic dog crates. "Hey," says Meng, "there's a kid in there!". Sure enough a small child sits calmly inside the nearest crate, tilting a plastic maze game to work the ball towards the goal. She is dressed in traditional folk dress. The child's furrowed brow belies whether she notices them or not. "Shoot" she frowns, shaking the maze.

"Do you want to come out?" Meng asks, eyeing the catch holding the metal grate shut.

She twists her mouth sideways. "Mmmmmm, no. Not really."

"Why don't you want to come out?" he asks.

"I'm waiting for my friends to come" she replies.

"How will they find you?"

"'Cause this is where we always sit!"

"Always? You mean every time you fly to China?"

"We're not flying to China! And no – I mean always always! Most days!" She returns to her maze. The maze is a spiral formation. The tiny ball rolls, carefully missing the traps along the way.

Meng and his mom continue on their search among the suitcases.

* * *

They awake to find the item ordered from the in-flight magazine had been placed on their trays in a crisp white bag. "How long did we sleep?" asked Meng, yawning and sore.

"I don't know. I guess they landed and got everyone's duty-free picked up" said his Mom, rubbing her eyelids elegantly with just the tips of her fingers.

"Wait – we landed?"

"The captain said we were landing to refuel only. They still can't figure out where land is"

"So, where did we land. . ."

"I'm not sure. it was really dark outside. Maybe like an aircraft carrier or something?" She opened her pocketbook to find her glasses and chapstick.

Meng opens the bag from the in-flight store and unboxes the item. The house his mother ordered turns out to be a tiny detailed model. It looked full size in the catalogue. "Why's it so small," Meng wonders. He was excited about the big house, the real house in the picture.

"This is just the token for the real house" his Mom replies. "We keep this one, until we have a chance to settle down".

Meng pouts. "We should have got the chocolate."

His Mom smiles wide. "We did get the chocolate." She turns toward the window. "Look." He looks out. Among the soft clouds, and every bit as big, the chocolate lollies sway and dip in the sun.

"But we can't get there!!!" Meng wails.

His mom strokes his hair gently. "Isn't that the way it is."

Running Mindlessly (Kayla)

I went for a run today for the first time in ages, inspired by Kayla Montgomery (link to article and video). I did some short sprints as I can't tolerate exercise, heat, or being upright for long due to orthostatic intolerance. I was surprised to be able to run this afternoon because this morning when I ran errands I was in bad shape. I have been having neuropathic symptoms since last May and my mobility is suffering. I had tremors this a.m. and could not feel my legs. I was dragging my feet sideways, and leaning down onto my cart. My body felt as if it was about to give out. My lungs felt so shallow, as the lack of oxygen over time diminishes organ function.

But after a long nap, in a momentary fit of inspiration, I decided to take the doggy on a short run before I could change my mind. I was always a fast runner at short distances, and today I remembered why I loved to run. Despite (because of?!) the terror of going fast while your brain is short-circuiting, running is absolute joy and freedom.

When Kayla runs, signals between her brain and body are increasingly blocked, such that she can't feel the pain in her legs that distance runners typically have to overcome. The numbness in her legs becomes an asset, helping her overcome the MS symptoms that are working against her at the same time.

With orthostatic intolerance, blood settles in the lower body, leaving the upper body and brain deficient. It was probably an advantage to have the extra blood/oxygen in my legs. The difficulty comes in staying focused enough to stay between the lines and finish the race while your cognitive function rapidly wanes. In Kayla's case, she had to give up soccer for a sport where she can "lock in" her movement, keeping track of just a few factors. Each race is a race against time; you want to finish the race before you pass out or give out. It is counterintuitive if you think about it. The important thing is not to think about it.

I was fascinated with the video footage of Kayla Montgomery finishing a race. You can see her struggle at the end; her gate becomes jerky, her eyes go blank. At each finish she collapses and seems to lose consciousness. Her limbs stiffen and spasm uncontrollably. After crossing the finish line, her coach and team members gather to "catch" her, breaking her momentum while she careens out of control. They lift her and carry her horizontally; she seems to float above them, limp and bereft. She dies each time – only to emerge miraculously from her stupor a short while later once her body temperature cools. I was inspired by her to stop worrying about what happens afterward and what people might think, and to trust that we will recover if we are meant to. Recovery is out of our control, but the will to run is not.

Sunday, March 23, 2014

Waiting for Health Insurance

Dear Jayne at USA Today:

Sorry for long delay; I was sidelined for weeks with migraines. Regarding your recent inquiry on the status of my health insurance, I recently received some information: ALthough the letter I received from Covered California in January stated that I was to wait until the County sent me information regarding my Medi-CAL eligibility, I finally called them in frustration. It took 1 1/2 hours and five people on the phone to inform me that I needed to speak to my Case Worker, Dave Katz, for any information regarding my insurance. Dave informed me that the COunty needs me to bring my passport in for certification of citizenship, and that I needed to fill out a form to add myself to my son's existing Medi-CAL services. I submitted these documents just last week, once my migraines subsided, and once again I am waiting to hear back. I did ask WHEN I should be able to use my Medi-CAL insurance. I was told that I am authorized to receive Medi-CAL insurance, but they don't know when my insurance number will be activated for use.

In the meantime I have had to cancel two doctors appointments (Cardio and Neuro) due to lack of an insurance card, and I have had to use emergency services when I became dehydrated from migraines/vomiting. I have requested that the COunty provide health insurance retroactive to January of this year, so I am hoping that the $1,800 ambulance and $900 ER services will be covered, as I lost my ability to pay for services when I became disabled. ER services administered Zofaran for acute nausea/vomiting, and 2 additional drugs for pain (Demerol plus one other). They told me I should be able to get prescriptions for these exact same drugs to keep on hand in case of another attack, in order to prevent unnecessary use of ER services. I do not know if Medi-CAL will cover these drugs, however, and more importantly I cannot administer a fluid IV on my own. Some POTS patients have an IV port inserted in their arm so they can hook up an IV when needed. Again, I don't know if Medi-CAL will cover this treatment.

The most frustrating aspect I have yet to address: Most doctors do NOT accept Medi-CAL, including my AUtonomic Specialist/Cardio. And since I am unable to travel, I have no idea if/how I will find a doctor willing to treat me, and how to get there? I decided to ask my new General Practitioner to request an electric wheelchair for me in addition to or instead of a Walker, as Medi-CAL does not provide Medical Transport unless you are blind or in a wheelchair. Even though I prefer to walk as much as possible I have to solve this logistical problem before I can even go see a doctor. I am simply not able to travel beyond a very small radius with the symptoms I have. My fear is that there may be a limit to how far they will transport you to a doctor appointment (some San Diego County residents travel to Riverside County in order to find a Medi-CAL doctor). I also have to wonder how the cost of Medical Transport compares to the money they save by limiting which Doctors can see us. I can't imagine that it costs less money to pay a Medical Transport driver and van for 5 hours travel and wait time, than it does to pay a local doctor a fair rate outright. Any logic is defied in this scenario.

Yesterday I did some reading online on one of the Dysautonomia forums. ONe fellow who studied medicine ( and actually comprehends the white papers on POTS unlike me!) provided a lot of helpful information. He verified the need for POTS patients to get IV fluids on an as-needed basis (when flare-ups are acute/worsening), and he does not hesitate to go to the ER when he needs fluids. He recommended contacting your GP first, in case they have time to treat you in office. This scenario frustrates me. While it is a comfort to know that ER services are covered, it would be even better to prevent such episodes in the first place through proper care and maintenance. However, I fear that the narrowing of treatments and services provided by insurers (to save costs), and the lack of doctors available to poor patients may in fact result in a very expensive and ineffective scenario.

In addition to POTS, I also suffer from Bipolar disorder. Psychiatrists and Psychologists do not normally accept insurance, and I am very afraid that I will have to go to the ER for acute mental health episodes when they arise. I am beyond frustrated; the lack of any sense in our health care system is enough to make one suicidal.

Sincerely, Naomi Spellman

Sunday, February 9, 2014

How is a medical emergency defined?

Last weekend during an agonizing migraine I had my son call my acupuncturist to request an emergency house call. But she was booked until that evening. I had become dehydrated from vomiting and couldn't swallow water or food. My condition was getting worse. Finally in desperation I asked my son to call 911, and to tell them I needed fluids administered and pain medication.

When the ER team arrived, I was vomiting naked on the bathroom floor. I tried to explain that I could not put clothing on, because the pressure produced by even the lightest clothing triggers migraines or makes them worse. Just getting out the house and downstairs to the ambulance was difficult. My vertigo was quite bad and I did not want to be carried.

Inside the ambulance they administered an anti-nausea agent, Zofaran, via a shot in the arm. I vomited again, but my nausea and the terrible pain subsided quickly. They checked for signs of stroke. I became spacey and disoriented from the drug. I felt as if I were drifting along beside myself outside of my body. I considered what it means to be chemically altered. I remembered: not knowing whether what I am feeling is artificial. I remembered the way one neglects to maintain a sense of reality on pills – because one must accept the artificialness in order to accept relief. In order to quell the pain, it is necessary to quell and alter normally occurring emotions. Considered another way: For people with brain disorders, in order to feel anything at all, we must feel everything. Even the things people aren't really supposed to feel.

They administered fluids and two pain medications via IV in the ER ( I believe one was Demerol but not sure) There was still some pressure and aching in my sinus and head after this administration. The pain drugs did not seem to make a big difference; I was already relaxed and nodding away from the first drug. They checked again for signs of stroke and I was very thankful for this attentiveness. I hadn't been able to sleep overnight, so I was desperate for sleep while I lay in the ER, but it wasn't easy and I just wanted to go home.

In the ER they asked why I called 911 that day, despite suffering migraines sometimes daily. I have never used emergency services in the past, except to get stitches once as a child. I explained that I was becoming dehydrated and had no way to reverse my condition once it had advanced. They explained that I needed to see a doctor for a follow-up.

"These medications we're giving you are available as a prescription, you know. You need to have something at home as a back up"

Of course, they were being logical. But how to explain that our healthcare system is not logical? That I had to cancel my neurologist appointment the previous week due to lack of insurance? That my expected Medi-CAL coverage has not yet been approved? That I could not pay a doctor or pharmacy because my untreated disabilities prevent me from working*? How to explain that my arrhythmia, vascular irregularities, and Bipolar put tryptopans off limits? How to explain the difficulty of swallowing a pill while vomiting, and that when pills comes back up, the coating is gone, and they burn your esophagus and cause distress? How to describe the logic of nasal sprays not being covered by Medi-CAL for those who need them? And finally, how in the world to explain to a healthy person that the pain and distress experienced during migraine can make you suicidal?

I was in one universe and they were in another. It seemed impossible to bridge this gap in my state. Maybe the best answer to their question would have been: we have a national healthcare system that creates medical emergencies, by allocating services and treatments in a way that is illogical, inefficient, and immoral. Hopefully it will slowly get better over time.

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?"


"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: