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.