Note: Written in good moments over the last two days. You’ve heard a bit from the bad moments…when I’m flat for long enough, I seem to be able to hide from the demons. Working on understanding, improving, accepting all I can…
When saddled, bridled, hamstrung and in every way hung up, impacted and derailed by a new illness, particularly one with such damned invasive symptoms, we quickly gives up hope of solving it by ourselves alone, and we all run to the experts.
Funny thing is, the experts don’t seem to know much about this stuff. How does the nervous system work? Well, it fires and you have to eat good foods. And maybe we can interrupt a bit here and there with a chemical. Or, maybe we can’t. (One neurologist did throw the obligatory double prescription at me: Prozac and Xanax. IE – Zombie-land. I declined.)
Medicine generally occupies itself selling us chemical potions and injections, mostly to protect us from the poisons that the world offers us in our food, water and industrial run-off. To be fair, Nature was cruel to us long before civilization occurred as a concept to anyone; Nature gave us spectacular diseases which we still struggle against when we’re underfed or our water isn’t purified. Most of humanity’s early attempts to make civilization were, in fact, great efforts of not going hungry or having constant diarrhea.
But modern medicine has left the simple pursuit of loving our bodies better behind, and is lost in a haze of petrochemical ooze and smog; the regular march of pills and injections that are now ours to absorb (as directed by experts, of course).
Today’s experts focus their ire on anything they can accuse of being caused by a virus, no matter how unlikely it is that immensely complex confluences of multi-system breakdown could be caused by one little visitor (rather than on long-term stressors on many levels of our internal existence).
And it is this myriad of places that I am suffering – in my nervous system, connecting parts of being that you’d never suspect weren’t simply one working piece. But when one eye refuses to behave as though it were attached to the other internally, or when the guidance and balance systems refuse to play as they always have on any normal day of a normal life…but then, I’ve hardly had a normal life.
(And really, who has? That’s just another story that we beat ourselves up with. We’re far stranger and more exotic, and more psychological creatures then we’re allowed to understand. But we don’t like to appear different from the rest of the herd. So we watch television to be spoon fed false memories of an offbeat “modern family” life that can’t reach the places reality has taken us.) But that’s for later… For now, the nervous system.
It’s buried under inches of flesh and wound around muscle, tendon and bone. It’s the Loch Ness, a mystery under dark water. And the experts do not have anything resembling a command of it.
As much as medicine wants us to trust its pronouncements, to let us inject us with its magical potions, it’s as in the dark as any of us with most of the “why” and “what to do” when the body fails. The truth is, medicine is a guessing game that tries to measure past events and make reasonable predictions about the future.
Insofar as medicine sticks to that reasoned approach, it is valuable to the many walking wounded with mystery ailments that refuse to be sorted out well, easily or at all.
But medicine doesn’t stop there; it dives into the world of absolutes and legally binding directives. Worse of all, it combines the scrutinizing authority of Medieval (and religious) witch-burning with the chemical carelessness of the petrochemical age. Medicine, under this shadow, loses its necessary value to us – that thing we need so much: healers who can patiently observe and help us understand – or to accept what we cannot.
We need a better medicine; but for now, we are here in this place of invasive and toxic experts. And now, I am here, most firmly here. And physically, I have been in an office applying for insurance, because I need it to receive help from experts who can perhaps give me a “why”…or if not why, then “what” my nervous system might be doing.
But here is the place that I am lucky. Not lucky to be sick, but lucky that my illness is of little interest to the people ruining medicine. When symptoms are purely neuromuscular and as bizarre as mine, there are no simple (and fraudulent) antibody tests that are there to sum up a few decades of stress-burn on the inside of a body. That is, whatever is wrong with me, I’m lucky they haven’t invented vaccines “against” nervous system disorders, or I’d be done for, as are people who walk in with big money illnesses like cancer and heart disease, or mislabeled multi-factorial conditions like AIDS or the variety of liver ailments bundled into a “Hep C” diagnosis.
Which isn’t to say that they don’t want big money for what they do offer (I’ll get to that) but that unlike with diseases for which they have killer pills and CPS mandated regimens, with neuromuscular crack-ups, they shrug their shoulders, and without labeling you a leper or telling you they’re sure you’ll be dead in a week unless you put their gun to your head – they tell you to do your best, try to be positive, improve your diet, do some gentle yoga, and lower your stress levels.
Which is a gentler approach, to be sure, and one medicine should offer for every condition. Of course, hearing “do some gentle yoga” is a frustrating nightmare in an emergency. “Gentle yoga, this, fucker!! I can’t fucking get my muscles to fucking stop fucking firing, god fucking fucking dammit fuck!!”
“Have you tried yoga?”
Right. Breathe. Give me drugs. And they will. And some help (more on that in a moment).
But what do you do when your body is falling apart – but invisibly – in the nerves, not the outside, not the organs, not the blood? Well, the first thing to do is to – if you’re me, you try everything BUT the doctor: that is, diet, rest and exercise.
Exercise is easy, or was. I’m a lifetime pedestrian, cyclist, and mover about by muscle power. I’m no great fan of cars and not a road tripper. I like to walk, I love to bike. When I lived in Florida (which is flat as a still ocean) six to eight miles a day was easy; 15 was fun. More than 20 was … fucking exciting. There’s something of an endurance athlete in me, and I feel like a Highlander coming off of a long trek across the rolling hills, my kilt blowing in the breeze when I put in a good, long, sweaty day moving and weaving and exploring (how did Scots not figure out how to sew pants for so long?). Wherever I go, or have been, any half decent bike I could borrow, has long been my best daily friend.
Rest is a little harder to come by with my nervous system: highly sensitive, pushed into PTSD in early life (the roots of the ailment can be found in the pre-existing weaknesses of the body). Sleep has for so long been fitful that I can’t recall when it wasn’t (unless I was drugged by pumpkin bread, which often seems to work with me, though it’s an unpleasant next day with little earthquakes in the southern swamps). But my diet has long been, from an American perspective, very good, and sometimes excellent:
Anti-inflammatory, good fats and plenty of electrolytes and anti-oxidants. Mostly vegetarian, rich in oil, little to no sugar, plenty of vegetables, beans, some fruit, seaweed and good vinegar; maybe too many seeds and nuts, no bread, some grain but not too much, and no allergies to any of it. Plus a ton of curry, turmeric, ginger and a good serving of probiotics (and whenever I could, homemade sauerkraut). If I’ve had a deficit, it’s been that I’ve been too tight on allowing a bit of dairy or fish to slip in (an important probable deficiency that I’ll talk about more soon).
Or, perhaps there were hidden, lurking deficiencies, not in the diet as much in the mental focus of the diet – which for too long excised even the most harmless of animal foods (organic milk and eggs) – mostly because I don’t like milk and eggs. Of course, one always eats animal foods. Cereal and bread are filled with insect bits and pieces. Chipotle used to serve me pork without telling me, which means: Years of secret lard! AAGGGh!!! SECRET LARD!!!
But that’s another story – and again, I’m pretty dietarily flexible these days, and have been increasingly so for a couple to a few years (though I still see no point in eating large mammals. What’s in a cow that would ‘save’ me from disease that’s not better in a little bit of fish is a mystery understood only by the die-hardiest paleo-vores).
Diet, rest and exercise. What’s missing? I’ll consider it further in future essays as time and energy allow. In sum, I haven’t been able to remedy it at home. My firing nerves have been stopping all rest. All the supplements in the world weren’t touching the problem. And more exercise has seemed, at times, to bring on a nerve attack of prolonged spasming and pain and constriction leading to fear and even terror.
So, nothing to do but get to the doctor, and let the experts have a look at me.
My friend who does all she can to keep me afloat and not drowning, helped me find a clinic which I could afford to get basic blood work done. It was a perverse relief to have the needles go in, knowing the small vials filling with my internal red paint would begin to knock some bricks from this wall and reveal where I am cracked and broken. I was told the tests would report a large “panel” of measurable functions, areas of deficiency, potential infection, plus blood sedimentation rate, and a number of immune/inflammatory markers.
(Here I want to thank my dear and adored friend, who shall remain a private person, but who is getting me through my hardest days with her persistent refusal to let me put a quarter in the suicide booth. She is certainly abusing her own sleep cycle to make sure I’m not falling into the abyss, and the great lesson in life is to love your people, and not let them forget that you do love them…and to my many beloved friends who are helping me research, think, and not give up.)
Given the amount of pain circulating, and the rapid firing of muscles and nerve fiber, I felt I would find comfort in the report of irregularities. I’ve also been curious to know if my diet (which had been vegetarian and mostly vegan, though very fat-friendly, for a long time) had done me in.
I’ll admit, I was distressed to hear my results: “Normal.” Blood, liver, kidneys, all of it: Normal.
My eyes swam for a minute (Normal? Well, what the bloody fucking shit hell then?) Then a thought occurred to me – “Did you test for metals?”
“No, not metals.”
“What about toxins?”
The nurse read a short version of the long list back. A comprehensive three vial blood test: inflammatory, infection and blood levels. And you get the joke before I write it.
“But if you’re having neurological problems, wouldn’t it make sense to test for metals and toxins first?”
Yes. But no. They don’t care about toxins and metals. There are no vaccines for petrochemical or metal poisoning, so why look? But yes, I need it. I’ll have to fight for that, and see what it costs, and if the hospital even does them. (And I thought I asked for them, because I fucking did, godfuckingdammit.)
In the meantime, I now have a list of what medicine can offer people with degenerative or chronic or bizarroworld horrorshow nervous system nightmare symptom syndrome mystery ailments.
For the first line of defense, for the people in the cheap seats (and that’s almost all of us), they hand out a couple of tried-and-true symptom-suppressing treatments. The first is steroids (better known as prednisone).
Predisone is an old standby for, well… lots of stuff. It quiets your immune response, boosts your energy… and will kill you eventually, shut down your organs, and make you fat and crazy along the way. Even the mainstream says: It’s a short-term paper plug for the bottom of a leaking boat.
Next: muscle relaxers. These reduce the pain and severity of fasciculations (earthquakes in your fascia – the muscles under your muscles – yes, it’s a slow-burning nightmare); for the tremors and all the horrible nerve muscle responses that make you feel like death is probably walking up the sidewalk and getting ready to ring your doorbell. (He’s in the neighborhood, at least, and you just want the spasms to stop, so you’re not sure if you should invite him to finish you off, or drink a gallon of vodka.)
Muscle relaxers definitely take the edge off. They also turn you into a TV dinner. Which is fine, if you want to sleep, which is also fine, because sleep is impossible in a fasciculation spasm storm. But … then again… if you don’t want to be a TV dinner, frozen, warmed over, uninspired, and just lying there with that weird doughy “pie” thing sitting in the corner slowly oozing .. what the hell is that? Apple? Hedgehog??
Anyway, if you want to be able to talk, walk or think, well, muscle relaxers probably aren’t your best friend. (Though I do love you, muscle relaxers, for saving my life at times! Don’t get the wrong idea, dear drowsy friend. I need you. Don’t leave.)
That’s what we, the uninsured non-earners of six-figure incomes can afford: steroids and relaxants. But there is another side of this fence where the grass is.. well. Golder.
First, there is a 10,000 dollar a bottle IV drip that supposedly works very well – in 50% of people. It’s nicknamed “Liquid Gold.” You’ll use it daily for a week, and then cycle that week across many months. And all the money goes to charity.
Kidding!!! Haha. It goes to .. well. Wolfram and Hart? Dewey, Cheatem and Howe? Or some other happy pharma company doing God’s work here on earth. (Wait for it… and…laugh.)
As this nervous system disease warrior writes [LINK], she’s glad she was in that 50%. (She also thanks her heavenly father for loving her – but fuck, what kind of insurance do you have to have to get that kind of love? I appreciate her sharing it as it is – but will I ever be able to afford that?? Taking bets now…odds are: wwhwhwhwhwhhhhaaa???)
But if a a quarter-million-dollar 50% bet isn’t in your game, there is another treatment sure to offer hope to nervous system disease warriors out there. This course is not a golden bottle dripping into your system. It’s a kind of Roto-Rootering of your plumbing, and it’s about as appetizing as having to plunge an overused and deeply plugged toilet at an all-you-can-eat barbecue and ribs roadside restaurant at the end of your 2am shift as a dishwasher.
In short, they remove and wash your blood, and put it back in you. They stick a deep plug in an artery or a vein that can stand the high volume and pressure. They then remove your blood from your body…just to the point of death. Or, I guess not. Intentionally killing you is illegal in hospitals, though accidentally killing you is mostly…well. Anyway, they take your blood out and run it through a machine. The machine separates the blood cells, removes the antibodies and dumps them. It then mixes the removed blood cells with…something resembling plasma, and puts it all right back into your body.
How does that sound to you? Pretty freaking fucking …no. No. Or, what I mean is. Fuck you. No.
Hold, on, I’m over-reacting. Let me back off and be more reasonable.
Words associated with this: Stunt. Temporary. Dangerous. Weird. Crazy. Stupid. Fraught with peril.
I’m sure it’s “perfectly safe,” and if I die it would be my fault, and not as a result of the process. On the other hand, I don’t think Evil Kineval would have done this shit. So….No. I’m not running to the blood swap meet.
And that’s it, true believers. That’s what the medical experts offer. Take your blood out and run it through a cheesecloth, or, put in some half-and-half gold dust.
And then, they say this: De-stress, diet, exercise, meditate. Work on mood. Stay positive. Do what you can. Enjoy yourself. Don’t give up. You’ll die eventually – even soon!
What they don’t say – and maybe should is: don’t masturbate. No kidding. My nervous system is unable to handle any mass dumping of that kind of electrical output. I’ve had two or three goes of trying this particular experiment, whenever I forget the last time and push past the voices saying: “Abort! Abort! Bad!! Bad!! Remember the Alamo!!” I end up being barely able to walk, make my legs work in something resembling “unison,” my trunk riddled by misfiring muscles, and both hands give up the ghost of happy response times or specific accuracy in motion.
The boxer’s standby: “No sex! It weakens the legs!” is an understatement in my current condition. Which leaves me with little from the experts but me gripping my muscle relaxers and eyeing the prednisone…
But you might be saying that I’m writing with a spring in my fingers or mind today – and I am – though I am lying flat and not moving much. (It’s the getting up that screws up a good thing.) But if it’s so, let me say that it is, or might be, due to another kind of therapy, (or therapies) one of which is legal in a few states, and the other, in most or all. The legal bit involves taking a plant ester called CBD, and shoving it…up your arse. (The less widely legal bit involves taking a plant ester called THC, and doing the same.)
Both products are from a plant known by different names; in Canada, you might say Hemp. But if you are looking to curry votes by making people afraid of Mexicans, you’ll probably say “Marijuana.” But it’s all varieties of the same creature. Which means you can also eat it, smoke it, chew, poof, suck or inhale it. But then you have to deal with the unpleasantness of cannabis products (that stupid “high” feeling, the paranoia, the being trapped in a stoned moment). [LINK]
Arsing the stuff skips all of that and might just be providing something like a “Hey, am I feeling not as bad?” moment. Leading one to ask: “Is this because of the CBD oil in my Benjamin Buttonhole? Or is the daily vegetable juicing just going really well?”
(Suppositories, is how you do it, and they’re easy enough to make – you just need a chocolate bar and a little courage. Here’s a video about that.) [LINK]
I’ll see how it all goes – and I’ll tell you what transpires. In the meantime, you can read this pamphlet for more.
More soon, as time and mood allow. My mind is working on a story from years ago that I’ve been wanting to tell you for a long time…a true story, and I’ll have to dig a little deep to do it. But I’d like to tell it…
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