Tuesday, December 31, 2013


I had an awful day today.

I was sick in the morning despite a good rest, and had to do yoga sitting down. After 2 weeks without crutches, I was suddenly back on them, struggling to get along.

When I got on the bus to go to dog training, I was told there was a new rule now. Service dogs must lay on the floor of the bus now (this has always been the rule, but apparently there is a new effort to enforce it). I froze. My doggy practically needs to be wrapped around my neck when I travel. The pressure lowers my heart rate when I am having an episode. Not to mention the soft fuzzy fur and yummy smell.

But I had to comply. I walked onto the bus and put my dog in a down on the floor. No, not working. I started getting distressed. I tried to sit on the floor with the dog between benches, but it was too tight. My vertigo kicked in. I got sick and dizzy. I began to panic. I finally moved to the back section of the bus, and sat on the floor with my legs wedged against the back of a bench, doggy in my lap.

I was on my way to have my dog assessed by a institute that trains service dogs. I was already told that most dogs are not deemed suitable due to temperament and other issues. I have been struggling with the prospect of giving up my dog for a trained service dog. So the journey felt like a death march, empty and meaningless.

Today there were few riders on the bus. But how in the world would i manage on a normal day? How will I ever get anywhere? This new rule spelled the end of my independence, I was sure. It seemed hopeless. I became increasingly agitated and started sobbing. I wanted out.

If this weren't too much, I had to pee in a stairwell at the trolley station, since no one bothered to unlock the restrooms. And I thought about the revenge poop at the West 4th Street Station in New York – in the stairwells, and on the escalator, round and round. And I thought about the dog whose front leg was degloved after his toes got caught in an escalator grill.

And I downed a fistful of doggy kibble that I mistook for my salty snacks in my confused, low oxygen state. It took a minute for the taste to register. "Hmmmm, where's the salt?" It tasted gravelly and strange. Dog looked concerned at my newly acquired taste.

I had an amazing day today.

My dog passed the test with flying colors. He was perfect and charming – absolutely calm. I should have had more faith in him.

When I got on the bus to come home, the bus driver told me to make sure I had a good hold on the dog. He waited until I sat down, lifted my doggy onto my lap, and wrapped my arms around him, before taking off.

Wednesday, December 25, 2013

Let's get excited: Performance anxiety and autonomic failure.

American Psychological Association article on getting excited versus calming down.

A recent study suggests that trying to "calm down" focuses one on the negative, whereas "getting excited" promotes positive feelings about an upcoming performance and helps one better negotiate the situation. I have no idea how this observation relates to anxiety produced by physical triggers, such as with Dysautonomia. So I decided to do an experiment.

Orthostatic intolerance is one of the syndromes associated with Dysautonomia. It is a fancy name for the inability to stand – specifically it describes a condition wherein the normal autonomic response to standing fails. When a healthy person stands up their body automatically regulates their blood flow to compensate for the change in direction (vertical versus horizontal), ensuring the organs continue to receive blood, oxygen, and nourishment. Normally, we don't have to think about this. But for those with autonomic failure, the body cannot make this shift (or any other changes that are normally regulated automatically). Instead, blood swells up the legs and feet, leaving one's head oxygen poor. Keeping in mind that dysautonomia patients already suffer from low blood pressure and reduced blood volume, you can perhaps imagine how dire this situation may become. Without oxygen, the brain flounders, unable to function. Some of us pass out repeatedly because of this failure. Many dysautonomia patients are relegated to a wheelchair, with an oxygen tank below and IV bag above, to prevent them from losing consciousness and their veins from collapsing.

But the real fun begins when the body attempts to compensate for the lack of oxygen by triggering repeated adrenaline surges. These hormonal surges speed up the heart rate and the flow of blood through the body – but do not solve the problem. Rather they create additional problems because an adrenaline release is always accompanied by anxiety and panic. It's just the way our bodies have evolved. One does not occur without the other. Each time a dysautonomiac stands up, we instantly panic. There are frequent and alarming surges in heart rate and palpitations. Chest pain, intense pressure, and a feeling of suffocation are not unusual. The problem compounds the longer we stand, as blood pressure continues to drop until the time we can get our head down as low as possible and our feet up high.

So here is the experiment: I decided I would stop trying to "calm down" (which allegedly promotes negative thoughts), and instead, each time I stand up, I will "get excited".

Yay, I am standing! Fantastic! I can do it! I won't fall over! I will stand up and walk into the kitchen! Feet: step forward – not sideways! What a glorious excursion - past the bedroom window, stepping over the threshold, walking along the hall. Outstanding! Legs don't fail me now! The performance is about to begin! I will pour some water – and I won't spill! I will not choke and spit up! No, not today! For today's performance is special. I will bend down and pet the doggy – without getting dizzy and sitting down! Dizziness go away! I am excited, and my excitement WILLS you away. Vertigo, be gone! It's show time! Confusion, numbness, terror – you, too, are banished! I am turning over a new leaf! I am standing on the great stage of the kitchen! Fuck "Top Chef". We are "Conscious Chef" today, and we will NOT sit down! We will not lay down in the middle of our finest hour!

Not sure how long I can stay excited. It's tiring. I'll let you know how it goes.

Monday, December 16, 2013


It is hard for people to understand the intermittent nature of neurologic and autoimmune disease. With dysautonomics problems with motor coordination, balance, speech, cognition, or breathing are sporadic. This pattern is confusing to people. Generally inconsistency and instability are met with suspicion or fear. But in fact we all function intermittently. Each day is broken into a cycle of activity followed by, and perhaps interspersed by, rest and recovery. While in repose, our brain is renewed, flushed with fluid. Memories are sorted and arranged. Damaged muscle cells repair.

Maybe an easy way to think of dysautonomia is: A condition wherein one's normal cycle of activity and rest are radically shortened. A short burst of activity must be followed by rest.

Or maybe it is easier to think of a dysautonomic as a car with a gas tank the size of a thimble. You can eventually make it to where you are going, but there are logistics to solve along the way. Often. Unexpectedly. Intermittently.

Thursday, December 12, 2013

Study: Autoimmune and Autism symptoms treated through Virus-like conditions

In a recent post I speculated about the relationship among: viruses, transposons, and genetic autoimmune or neurology disorder, and pointed out that some autoimmune and neurologic patients rarely contract viral infections. Today information from a recent study indicates we can improve the symptoms of such diseases by mimicking the conditions caused by viral infection in autistic patients. Hot baths and parasitic worms were used successfully in this study. The article also describes how the natural contraction of viral infection and fever improves symptoms in autistic patients.

Could a Tiny Worm Help Treat Autism?

When will these techniques be tested on those disorders which share the same genetic mutation as autism spectrum disorder, such as Bipolar Disorder and Schizophrenia? And what about other autoimmune disorders, such as Dysautonomia? It would be exciting if we could improve symptoms in this way, without the side effects of detrimental chemicals. I would love to climb into a bath of hot worms.

Friday, November 22, 2013

Sprinting towards the Finish Line

When I was young I loved to run. I still love to run, though now I only run in my dreams. When I say running, I mean sprinting. I was born with Autonomic Failure, so running any kind of distance was distressing and took a long time to recover from. Racing for me – like swimming or skating – was a pure moment of freedom. It was escape, literally. But there is always a line lurking before me. There is a point beyond which I can't proceed.

Imagine lining up, adrenaline snaking through your limbs. Imagine the start, explosive and focused. Your stride evens out. You hit top speed. You relax. But within seconds, rapid-fire, your competition kicks in – not the other runners, but dizziness, confusion, panic, tingling, and the feeling you are losing consciousness. Your brain and lungs are deprived of their function even as your legs swell and pump, milking whatever oxygen remains. You are running, still, maintaining your pace. But your ability to think and sense disappears. Your world closes in quickly around you. You are sprinting alone in a tunnel. Time slows down and the finish line edges further and further away. Your toes are numb, as if the tips were missing. The white lines painted on the track, the texture of the surface, the sound of your spikes tapping the ground – every sensation turns against you and becomes an enemy. You are beating against them. You are stamping them out. The finish line looms alongside oblivion.

I realize now these brief terrifying sprints were necessary. Each sprint was a test: a test of my alive-ness, which waned and waxed inexplicably. A test of the physical and mental limit imposed by my disease. Each sprint was a blow to the fuzzy shroud that descended around my brain to taunt me.

I realize now that every endeavor I have undertaken was approached in exactly this fashion – in desperation, at a dead run, hoping to last to the finish. Every endeavor was a battle against my recalcitrant brain. Every action was an attempt to jar it, to keep it moving. I was afraid to stop moving. I feared if I stopped, I would descend into the quagmire that pulled at every step.

I remember my middle school track coach, Mr. Gottfried, screaming at me across the oval during distance training because I could not keep up. "SPELLMAN!! WHAT THE HELL IS WRONG WITH YOU?! YOU KNOW DAMN WELL YOU CAN RUN!" I was able to place in sprint races, sprint relays, and the triple jump. I just didn't make sense. I don't make sense to anyone – including doctors.

In January I will qualify for health insurance for the first time in 25 years. Hopefully I can approach it at a steady jog and avoid wiping out on the turns. After failing for 48 years to get proper care from Health care providers for "invisible" conditions, I am not optimistic. I am not even sure I feel like trying anymore. I will never win. But I have to line up. I have to compete. If I don't, I am finished.

BTW I forgive you, Mr. Gottfried, for screaming at me. Maybe I should even thank you. Even though I wish I could have got help, In some ways I am thankful I did not. I feel fortunate to have done all the things that I am not supposed to do.

Monday, November 18, 2013

The role of viruses in neuropsychological disorders

Is it possible that the genetic mutation associated with Bipolar Disorder, Major Depressive Disorder, Autism Spectrum Disorder, and Schizophrenia does not determine the expression of these afflictions, but instead acts as a catalyst for information from "junk" DNA to manifest? I have been wondering why neurologic afflictions share so many characteristics with viral infections. I don't believe this is a coincidence. We can catch – and lose – the symptoms of a virus. But neurologic disease is either present from birth or switched on – rarely off. Is it possible that these disorders protect us from something much worse? Or perhaps they are holdovers from a time when the exploitation of viral activity ti manipulate of DNA was young. In other words maybe these disorders reflect a compromise in the mechanism of dna enhancement or manipulation accomplished through viral activity.

I have noticed that in some individuals or families wherein neurologic disease is prevalent, the contraction of viral infection is rare. I have not had a flu for over 25 years, and as far as I know I never received any immunizations except for polio when I was small. What if this exclusive relationship has to do with an immunization effect conferred via "Junk" DNA during development.

Our "Junk" DNA harbors a vast and ancient reservoir of viral information, some of which is half a billion years old. This viral code serves to protect us against viral infection. But did our bodies borrow from this reservoir in times of need? Environmental pressure might play a role in "switching on" traits that resemble viral infection, for the short-term gain the characteristics bestowed may achieve.

Is it possible that we retrieve solutions from our "junk" DNA when there is already a problem in the development of the brain and neurologic system? Consider the Bipolar brain, which has less grey matter mass than the normal brain. What if the reduced grey matter is the developmental disorder, and Bipolar is a response to it?

Is it also possible that when this data is retrieved, there is additional DNA in the way of "enhancers" that are retrieved at the same time? Linked genes provide either-or possibilities: a hairless dog is achieved at the expense of its dental health, as the gene that determines the hairless trait is carried along with the one that confers dental disease. In the scenario I am imagining, the retrieval of repair information "gifts" the recipient extra enhancers, which may serve to somehow offset or mitigate the problem that instigated the retrieval of repair DNA. In other words the attempt to solve a problem has the effect of creating new solutions, or conferring newly created tweaks in the way certain genes are expressed.

Perhaps the necessity of delivering a genetic fix for certain developmental problems comes with a compromise: latent viral symptoms are carried along and harbored. They can be triggered by extreme stress. A short-term fix carries a latent negative potential for expression.

There may be a genetic advantage when neurologic disease is expressed in a way that is easy for all humans to read. If it's expressed through symptoms similar to viral infection, the clear message is to stay away (and therefore protect the community from sickness or disease). By creating visible signs for invisible (neurologic) affliction, a benefit is provided to society – but not to the individual.

The above may point to why the stigma of disability is so prevalent, in particular in regard to invisible or neurologic disorder. A bias against the afflicted has served us well for most of human existence. Has this bias outlived its usefulness?

Thursday, May 9, 2013

Teachers to watch out for mental health “symptoms”

The NIMH will no longer fund the bible of Mental Health Diagnosis, the DSM. And yet the problems associated with symptom-based diagnosis will be perpetuated in the government initiative to have teachers on the lookout for mental health disorders.*

To ask teachers to watch for Mental Health symptoms, when they are already seriously overtaxed after 6 years of decreasing budgets, is a recipe for disaster. Teachers already threaten the parents of creative and occasionally non-compliant students with “your child’s (drawings, behavior, comments, etc.) are disturbing and inappropriate”. In reality, every creative child’s drawings could be construed as “disturbing” or “inappropriate” – in particular by an over-stressed and over-worked teacher. Not only is it an unreasonable expectation, it allows teachers to control children with the threat of a mental health assessment or diagnosis.

As a teacher, I completely understand how frustrating it can be in an over-crowded classroom to have agitated, bored young people exercise their individuality and creativity. But it would be unfair to ask teachers to make an assessment about an individual’s mental health condition. Even under the best conditions this task is difficult for doctors. It is also an inappropriate expectation. It skews the teacher’s role toward surveillance, and will breed mistrust between students and their teachers.

We could more accurately predict mental health conditions through software that analyses an individual's computing and online habits. I am not advocating the use of such software, but in fact mental health disorders are in many ways very predictable, and one’s online and computing activity do reflect behavioral patterns and mental shifts. The question is: What is the goal of this "early alert" program, and what negative impacts may it have? If schools or our government want a tip-off regarding potentially dangerous conditions, there are more accurate ways to accomplish this task. There are also more humane steps we can take without undermining the trust essential for a healthy and productive teacher-student relationship.

Claudia M Gold on her blog Child in Mind advocates for a more holistic approach to understanding mental health ( http://claudiamgoldmd.blogspot.com/2013/05/dsm-nimh-on-mental-illness-both-miss.html ). The discipline of Infant Mental Health engages a process that is, according to her blog, “characterized by four key components. First and foremost, it is relational, recognizing that humans (and that includes their genes and brains) develop in the context of caregiving relationships. Second, it is multidisciplinary.. Experts in infant mental health offer different perspectives.  They come from many fields, including, among many others, developmental psychology, pediatrics, nursing, and occupational therapy.  Third, it encompasses research, clinical work and public policy.  The field looks at mental health within the context of culture and society. And last, it is reflective, looking at the meaning of behavior, not simply the behavior itself. The ability to attribute motivations and intentions to behavior is uniquely human, and research has shown that this capacity is closely linked with mental health.”

Let’s hope that instead of policing for false “signs” of mental health disturbance, we can proceed with intelligence, engaging the wide range of existing and evolving tools.

* “According to a January report the Obama administration planned to spend $50 million to fund Project AWARE (Advancing Wellness and Resilience in Education), which would train teachers to identify signs of mental illness or provide "Mental Health First Aid" and ensure that students have access to mental health care. According to the report, Project AWARE would reach 750,000 young people” – http://abcnews.go.com/Health/obama-budget-includes-235-million-mental-health-initiatives/story?id=18922699#.UYxPjoLb_-U

Thursday, May 2, 2013

Cannibalism in Jamestown Colony

from the Smithsonian Institute

This story amused me because the young William Henry Spellman would have already arrived in Jamestown from England or Wales by the “Starving Times” in Jamestown. But when I examined accounts about William Henry I found that he was sent in 1609 to live among Powhatan Indians, and returned after this rough winter had past. Luck served him well many times, as he was spared from death on more than one occasion. He seems to have had sticky fingers (Business acumen?!) and, despite his youth, a sharp tounge regarding those who ruled the colony – perhaps as a result of the role the Spellmans (Espilemans) played in the legal profession over many generations in England (judge, scribe, counsel, etc.). He learned the Powhatan language and wrote a book about them – apparently during the time the colony was under seige by the.Powhatan Confederacy. He was sentenced to death for challenging authority in the Colony but spared by the efforts of Pocahontas. I have wondered if his precociousness was the reason for his “exile” among the Powhatans. His thieving ways eventually caught up with him and he was ultimately killed by Powhatans while leading a trapping expedition downriver. He had married a Powhatan woman and fathered children with her before his death.

After the “Starving Times” only 60 survived from the 300 Jamestown settlers. If W.H.S. had not joined the Powhatans during this time, would he have survived? Surely, with his trapping and skinning skills, he would have done a better job dismantling the skull of the 14 year old English girl they feasted on that winter. Though I suspect he only acquired these skills from the Powhatans during that winter.

My musings about William Henry are often about inherited characteristics which I “see” in myself or my son. Of course in reality so much DNA has come between ourselves and the Spellmans who left England for the New World. And of course in the west it is the patriarchal lineage, and not the significance of our common DNA, that inspires this speculation. We lose sight entirely of the matriarchal lineage, just like they do with racehorses. My shoptlifting tendencies when young? – definitely the fault of William Henry. My difficulty with authority, and that of my son’s? – again, I see William Henry. This speculation is mere folly, of course. But one speculates nonetheless. And so I can’t help but see William Henry – with his survival instincts, his cunning, and his incredible luck – on Mars. Not the 1609 Henry, dressed in tights and a feathered hat, but the same individual transported 500 years and 34 million miles away.

I think about the horrors of arriving in the New World. Those who survive the trip are not the same individuals suited to managing things once arrived. Trapping and farming skills were absent among the ragtag groups that arrived on these shores (this deficiency was exploited by Powhatans in 1609). Again and again one is confronted with surprises. How does the brain respond to these demands? Did William Henry have Bipolar? He was certainly argumentive, creative, motivated, fearless, and a risk-taker. So I will transport W.H.S. – an anachronism, a freak, a survivor who simultaneously endangers and enables those around him and after him – into the future.

He is – or claims to be – a logistics expert, a driller, a gleaner, a salvage operator. A friend and an enemy. Guileless, fluid, hard to pin down. If fuel runs low on Mars – call William Henry. Underground crops failed this year? – call William Henry. Shipment from Earth delayed or destroyed? There’s always Henry. You may not know what you are eating, but you will eat.

Friday, April 26, 2013

The most valuable commodity on Mars? Cadavers and embryos top the list.

When humans finally colonize Mars, everything will be recycled. Nothing will go to waste. Certainly not valuable organic material, which can be used for everything from compost and fertilizer to starter for growing lab meat.

It is thought that terra-forming Mars at any significant scale will take millions of years. Until the time microorganisms, plants and animals populate Mars, we will dependent on whatever organic material can contribute to the growth or production of food.

I’m quite sure they won’t be burying the dead, as the ground is hard and frozen. Without oxygen, they won’t be cremating them either. The need for regular production of food will be paramount, and this need will supersede the maintenance of taboos cultivated on Earth.

Consider the high rate at which developing embryos fail here on Earth. The complexity of the human brain engenders a trade-off. No mammal on earth exhibits the rate of failure associated with human pregnancies. Ergo the frequency of partial or complete reabsorption of the foetus, as well as stillborn events.

Urine will be recycled to drink; feces will be coveted for the nutrients they lend to plant growth.

I imagine a restaurant on Mars outfitted with food printers. The “ink” loaded into such printers will be derived from collagen, protein, and cellulose. The only reliable source for this “ink” will come from the colonists themselves. These dishes may well mimic the foodstuffs we crave on earth in taste, color, and texture. Lighting, Holograms and mood-enhancing drugs may further help to reproduce the pleasurable experience of dining here on earth.

The post-war story “Soylent Green” imagined cadaver-derived food production methods on a post-apocalyptic earth. But on Mars there will be no need to hurry death toward these ends. Sickness and dysfunction in embryos and adults will be insured by extreme conditions on Mars. Cosmic rays and extremely low gravity will compromise the development of embryos, as well as our senses and organ function. Extreme temperatures, lack of oxygen, and the probability of deadly viral outbreaks in cramped, contained micro-environments will further stress those who bravely venture where no man has gone before. Yes, we will have new ways to limit these dangers. But we will also be surprised by unexpected stressful events.

The need initially for contained micro-environments will severely limit – if not preclude – the introduction of familiar flora and fauna on Mars.

Taboos develop and change based on pressures acting on communities. Significant pressure to evolve and adapt will ensure the rapid shift of some of our most dear beliefs.

Sunday, April 21, 2013

Needles and Pins

Acupuncture has been somewhat useful for short-term relief of the distress and agitation of rapid cycling and mixed Bipolar symptoms. These symptoms subsided suddenly with a tiny needle inside the center of the right outer ear (in the center of the dome that is attached to the head). This needle completed a circuit, already laid down by needles at key points in the loop. The sensation was that of a balloon rapidly deflating. The sudden absolute calm was a relief. This calming effect kicked in during the 3rd acupuncture treatment in as many weeks. Initial treatments were helpful but the benefit increases with regular treatment, especially with stubborn symptoms. For chronic symptoms regular acupuncture treatments have been more effective than sporadic treatments, though regular treatments can be prohibitively expensive. Needles leave no side effects, unlike pills.

Saturday, April 6, 2013

Not My Specialty

The diagnosis from the Ophthalmologist in August was “dry eyes”. But I went there with “dry eyes”. I guess I should have pointed that out to him. What I really wanted to know: why the dryness, diminished vision, and reduced pressure (goopey or soft eyeballs)? The Ophthalmologist was looking into the front of my eyes. But I wish he’d looked at the back – the veins and nerves that nourish and control the eye. The vascular system has been malfunctioning due to Dysautonomia for a decades, the organs starved of blood, nourishment, glucose. How does one explain Dysautonomia to a doctor? It is too strange.

Outcome at Ophthalmology: A $300 bill for a prescription for OTC eye drops. In moments like these I think about the Nicole Kidman line from ”Days of Thunder”, when her doctor character admonishes the Tom Cruise character for an inappropriate request. “That’s not my specialty” she intones icily, then exits the exam room. It often feels just like that, as if you had make an inappropriate request, by showing up with a bewildering problem at the doctor. The request in this case was to get help with organs that are suffering the effects of an "invisible" or neurologic disease, rather than an affliction that originates in the eye.

If he would have told me that his diagnosis, besides “dry eyes”, included “adult onset goopey eye”, and “bitch lyin’ ‘bout bein’ blind” then his “diagnosis” would have been complete. Note to self: Do not go to a young doctor again. Do not go to any specialist unfamiliar with neurologic patterns. It is a complete waste of time.

In the future I would ask the Ophthalmologist to measure my eye pressure. I would ask them to image blood flow to the eyes. Maybe they could explain why the right eye goes out, but not the left. But what will these measurements really yield, besides data about a problem that can't be solved.

An Ophthalmologist should be knowledgeable about neurologic conditions involving optical nerves including nystagmus, migraine auras, ischemic stroke, sinus tachycardia, etc. The problem with doctor’s “specializing” in anything, is they become willfully unaware of important peripheral information, which would allow them to assist a patient who comes in with a complex problem. “Not my Specialty” is a tactic doctors use to avoid helping patients when symptoms don't have an simple solution.

Why isn't medicine treated the same as other professions? When one goes to the mechanic, and the mechanic cannot find a problem with the car, the mechanic doesn’t charge you for not helping you. When you go to a lawyer for help with a standard legal issue, unless the lawyer wins the case, they don’t get paid. But when you go to a doctor you are expected to pay in full – even when they decide not to help you.

Wednesday, April 3, 2013

“Remember to spay and neuter your poor” and other advice from StephenColbert

“Remember to spay and neuter your poor!”

“Why don’t we put up a prescription booth. Just grab as many pills as you can in 30 seconds. Who knows? One of them might cure you. The others might get you high.”

A couple of bombshells this week from Stephen Colbert. After laughing I felt alarmed at the truth in these observations. In the first statement, you can replace "poor" with "sick" and it still makes sense. In America, those that lose their health typically lose their job and health insurance at the same time. This triple whammy is common. That’s partly why SSI offices are filled with those who have lost the ability to care for themselves, or to get the medical care they need. The other reason is the baby boomer generation is now at the age where neuro-psych afflictions tend to become disabling among those carrying the genes.

The second statement reflects the attitude about pills among American doctors, particularly those treating neuro psych patients. Many such patients take 40 or 60 pills daily. Typically doctors aren’t aware of counter-indications, so it is important for individuals to research the latest info re: which pills cannot be taken together, or by patients with a particular diagnosis. Genetics also plays a role in whether medication will be effective – or create significant problems. So discuss with family members with the same diagnoses. Fatalities and serious conditions resulting from pill toxicity are not uncommon - they show up on records and death certificates as Myocardial Infarction (heart failure), liver failure, kidney failure, etc. Unfortunately pill incompatibility, pharma-toxicology risks, and the role of genetics is not discussed between doctors and their patients.

I hope Colbert continues to draw attention to these issues. Maybe humor is the best way to draw people toward a constructive dialogue.

Wednesday, March 27, 2013

Catherine Zeta-Jones goes to work

It is difficult to make choices re: health care needs. Is it more important to continue buying anti-virals, or to get help with rapid cycling? The neurologist already fell out this week as the doctor’s fee and refill medication are out of budget. Hopefully it will be possible to qualify for healthcare eventually, though genetic conditions make it difficult to qualify.

Had a frightening episode on the bus today, after the bus driver attempted to drive past me, to avoid picking me up with my service dog. I got into an altercation with her. It was out of control. I was beside myself. Considering going to the ER to get temporary relief if it stays bad.

My mom reminded me that Catherine Zeta-Jones goes to work, and she's Bipolar. She’s even in a play now. Every night. All week. Imagine. I remind her that Catherine Zeta-Jones has health insurance, and takes a year off whenever she feels like it. At least that’s how I imagine it. I imagine the doctor comes running whenever she calls – even in the middle of the night. Her husband no doubt pours him a drink before he leaves. They acknowledge their mutual indebtedness. Call anytime, really. I doubt Catherine Zeta-Jones carries the suicide hotline number around on her keychain.

My poor mom wanted to know how much to see the new doctor? But it is not just about the growing cadre of doctors needed. It is about ongoing habilitation expenses every day for the rest of this life. It seems impossible to justify these growing expenses.

Once upon a time people died before 40, and most of them never knew they carried these peculiar genes, because they died before these afflictions escalate. We last way too long these days.

Wednesday, March 13, 2013

Autonomous Mechanics

My vertigo spiraled out of control when I went to watch the Robotics Competition over the weekend. I burst into tears when I first sat down at the top of the arena, followed by 20 minutes of intermittent laughing and crying from all the environmental stress. After an hour and a half of pounding music, spinning lights, flying frisbees, and the sound of 60 autonomous robots whirring and clanking, I was on the verge of vomiting and could not properly lift my feet (sliding feet slowly in order to move forward). After venturing into the pit and walking with (smudged) goggles I was sweating profusely and panicking, and needed help leaving the arena. My Otoneurologist said the balance and cognitive problems could be brain damage from years of vertigo. Has anyone heard of this? The strange part is the worst balance problems started when the vertigo subsided temporarily – maybe because the brain for so long tried to correct for it. And continues to try to correct for it, even when it's absent. Weird. Hopefully I can eventually get rehabilitation for this damage, and regain my balance.

Despite the distress I was so happy to see my son in his element. His team placed 5th out of 60 teams, and won 2 trophies including top-seeded rookie team. I realized that it is not about me at all. I need to get up everyday for important reasons, but I have to remind myself: It has nothing to do with me. Life goes on, even when my own goals are annihilated.

Tuesday, February 19, 2013


In December I was diagnosed with Dysautonomia, which was what I suspected per my symptoms. It took two years of research online (and 48 years of strange, shifting symptoms) before I understood that I needed to find a Cardiologist with a tilt table familiar with this disease. The winter was harrowing. Symptoms are bad in winter. My vertigo and dizziness returned in fits and starts. The vertigo even has a new trick: it spins on 2 axes now instead of 1. The viral outbreaks that started last summer are now apparently on the inside of my body as well as the outside. My Cardiologist prescribed Valacyclovir for my allergic-type orthostatic intolerance symptoms, and for the outbreaks. So far it is helping with the viral symptoms, which became resistant to the anti-viral originally prescribed for it.

I have been having regular episodes late mornings with orthostatic intolerance symptoms, Pseudobulbar responses to the stress, and allergic-type reactions all at once. It is very distressful, sometimes with chest pain and numbness in my right arm and right side. Yesterday this chaos was preceded by an epiglottal episode that lasted for about 50 seconds, during which time I was getting some oxygen but not enough. I pounded my chest with my fist and tried not to pass out. I was trying not to cry because it made the reaction worse, but it was terrifying. This morning I also felt like passing out – this time from low blood pressure and pre-syncope. I keep thinking I am about to die. I was up much of the night, restless, with elevated heart rate, thinking bad thoughts.

* * *

After a lot of distress during the day, I am finally feeling a lot calmer. It could have been the Valacyclovir causing the distress I had earlier today. I am thankful for any respite from symptoms, however brief. I have been trying to focus on just the present moment, one second at a time.