Friday, May 3, 2019

A White Elephant

Wow!  The FBI or CIA has done a good job expunging all the nefarious Eastern-bloc bots that had artificially driven up my blogger stats.

To be honest, I find it a bit of an adjustment.  For years, I thought I was actually popular in Ukraine--after all, my father's people on his father's side came from Odessa.  They were Barmacks.  I figured, someone stumbled across the name and got curious, became a fan.

But, no, there is no ancestral connection or fandom here. Only wishful thinking on my part, and robots on theirs.

Moreover, my most vocal supporters clearly prefer it when I write about some topics and not others, or when I write witty prose instead of lard poetry.  I can't explain their taste, but I assume they find it annoying when I jump the tracks, as I frequently do.

Anyhow, there is freedom in going largely unread.  I would like to write about my health again, and for that I'm glad to have a limited audience.

Like money, politics, and religion, health is a touchy subject.

Caveat: I'M NOT DYING, so there's not much interest in what I have to report.

On the other hand, I don't think one should have to be dying to write about ill health--although I realize, from a literary perspective, that it helps.

If someone is able to be eloquent and, in a tonal sense, disinterested in how they describe their drawn-out experience of dying, then we will read it.

The tricky part is, it's like humor.  You can't laugh at your own jokes, and you can't cry with self-pity, either. The author has to at least feign a stoic courage and detached interest in their own unraveling--which, they might argue, (correctly, I think) is a strange interstitial space, as integral to living as to dying, if not more so.

But it is a certain road, isn't it?  And we're all on a road of some kind. You may be on the road to retirement, or the road to maturity, or the road to success.

If you're lucky, you're out on the open road, in search of adventure.

We're not all on the same road.

Chronic but not terminal disease is a road I'm on.

For those of you who remember, I had these tiny weird nefarious doo-hickeys removed from my reproductive organs, last spring.  The inflammatory filaments associated with them fostered  symptoms that exceeded the mandate of my disease: Sjogren's, with a touch of undifferentiated connective tissue disorder.

Like a great parfum mingles with your own body chemistry to create a uniquely personal scent, Sjogren's disease plays a different tune on every woman's body.

The primary symptoms are dry eyes and mouth.

I broke my first tooth in 2012.  I was flossing, and it crumbled under the friction of the string.

A year later, I bit into a chicken sandwich at Burger King, and hit something solid that shouldn't have been in a chicken patty.  It sent a jolt of pain through my jaw that radiated through my face and head and left me stunned for several seconds.  When I came clear, I spit out half a tooth.

For someone who, all her life, had frequent anxiety dreams about losing her teeth, I found the reality of actually losing them much less disturbing.

In the dream, they fall out all at once, a metaphor of loss.

At Burger King, it was a single tooth. And, as painful as it was, it did not pack the emotional wallop of a metaphor.  It was just a tooth.  It was just pain.  That's all there was to it.

Later, I had the remaining tooth pulled--under gas, which is my favorite anesthesia.

Honestly, when I'm under gas, you can take all my teeth, I don't care.  I might comment about it in my head--but with real objective disinterest.

Once, when I was 25, they gave me valium intravenously for two impacted molars.  I hallucinated, imagined I was being attacked and mugged by two or three people in a public park. It was a wooded path.  I was still sobbing when they turned off the valium.  A couple of attendants had been holding me down.

A sense of boredom sets in the moment they turn the gas off.  And in those minutes of adjusting to not being well entertained in my head, I find I have a deeper appreciation for what drug addiction is all about.

It felt weird when they drilled the hole in my jaw for the artificial tooth--the implant that would be screwed into place.

I was under the gas, of course, so it didn't really bother me, but the thought floated through my consciousness like a cloud that maybe my jaw would break apart.

But then I remembered the extra bone at the base of my gum line--I can feel it through my cheeks on both sides--a horizontal rise that you would remark on if, say, you were examining my skull as an artifact in a museum, dry and apart from all flesh. You would see the hyper-ossification and excessive reinforcement undergirding a few chipped teeth.  This would be my skull's distinguishing characteristic.  Moreover, a kid might enjoy unscrewing the false tooth and screwing it back into place.  My skull is destined to be a favorite.

As the surgeon drilled, I pictured those two bony outcrops as flying buttresses, fortifying the integrity of my jaw.

But the bills! The bills for the implant were several and steep.

And so it goes, with Sjogren's: I now have two crowns, one implant, and one empty space in the back of my mouth where there used to be a tooth.

I could have a second implant, there, but why?  I chew just fine.

The dentist warned me, the absence of a tooth there could cause the one above it to sink down into the open space--or some such nonsense.

Thanks, but I'll take my chances.  (Sounds like bullshit to me.)


I bought a blood pressure monitor on Amazon, because I was having issues with fatigue in the afternoon, and I wondered if blood pressure had anything to do with it.

I occasionally get a high blood pressure readings at the doctor's office--most recently, when I was about to have a lip biopsy--where they stick needles in my lip and pry out glands, for testing.

They wanted to confirm the original Sjogren's diagnosis.  The lip biopsy, some say, (others disagree) is authoritative.

I got another high reading the first time I used it--high enough to put me in the type 2 category for hypertension.

But when I shimmied the cuff up higher up my arm, level with my heart, per directions, my blood pressure dropped down to normal.

Even so, sometimes it still tests high, so I do it again.  The second time, it is normal.  So this is the pattern: I do it once, I get a poor result.  I relax. I think calming thoughts...I do it a second time and get a passing grade.

Frankly, I'm not sure it's worthwhile to have a blood pressure monitor at home.

My husband and my son both tested normal on their first try--on the same day my result was Level-2 hypertension on the verge of a stroke.

But then, the other night, just because it's there, on the table, in the dining room, irresistible, like a Magic Eight Ball, my husband got a very high reading as well.

He repeated the test, with alarming results.

Then he took off his shirt, and repeated the test.

Then he read the directions, and repeated the test.

Then he examined the cuff and decided that it was too small for his arm and so his results were fake, as in, fake facts--didn't really count.

He is content with that conclusion.

Meanwhile, I continue to have a poor reading followed by a normal reading.  I choose to believe in the second reading.

And this is how it is with medicine, isn't it?

My old PA from Rheumatology left practice suddenly, without explanation.  I wonder why.

She was nice, supportive, a little overeager to prescribe medicine.

She put me on a new drug  that was supposed to keep my juices flowing.  She told me to take one pill three times a day with meals.

I took the pill with breakfast and lunch, and then I nearly fainted for the first time in my life, right there in the post office.  With difficulty, I drove the three miles home, my brain about to blow a circuit.

"She's got to be wrong," I thought.  If I take another one of these pills, it will kill me.  So, I didn't.

Recently, with concerns about high blood pressure, I read up on all the side effects associated with my medication.

For that prescription, among other side-effects, I read (this is real):

If you stop breathing...

If you pass out...

If you have no pulse...

Right.  If you stop breathing, pass out, and have no pulse, call your fucking PA in rheumatology and complain, bitterly.

But fatigue was my biggest complaint. I had hoped that the demon coils were responsible for my afternoon exhaustion, but, over the last few months, the fatigue had crept back into my day.

My blood labs are interesting to read, as a measure of autoimmune-disease activity.  But I don't know how any of it correlates to symptoms.  And neither do they.

The  primary medication I'm on is only effective 55% of the time, I read, and I suspect that I'm not among the lucky ones.  However, it is the first and foremost medication for auto-immune disease.  It's an anti-malarial, so I've got that going for me.

Side effects of Plaquenil: It's hard on the digestive system.  I spend my entire morning belching because a single bowl of cereal.

They say fatigue is the hardest symptom to contravene.

So, I went online and found some vitamins and herbs that are supposed to support the immune system.  (Theoretically, my immune system should be overactive--that is the nature of the disease; but I have a low white blood-cell count, and that's supposed to be my little army against disease, so what's with that?)

I am taking a lot of Vitamins C and D, as well Echinacea. I also upgraded to the old-lady vitamin. It has all the zinc and whatever, selenium, that I need in my decrepitude.

The result?  Fatigue gone!

And you know what else I learned?

You know all those kooky, folksy people who can't afford health insurance and talk about how they never get sick because they drink and literally bathe in apple cider vinegar?

Do you know them?

I do.

I've been hearing about apple cider vinegar since I lived in Middleboro, Massachusetts, back in my early thirties.

I don't know why people give me unsolicited advice about apple cider vinegar, but they always do.

So, I'm looking up remedies for high blood pressure, right?  And I'm on the Mayo Clinic website.   It's saying I can lower my blood pressure significantly in 24 hours by ingesting two teaspoons of apple cider vinegar.

Apple cider vinegar: It balances the microbes in your stomach.  It lowers your blood pressure.  It moderates your weight.  It keeps flies off horses.  It keeps mineral stones from forming in their hind gut.  I kid you not!  This stuff does it all.

If you're not drinking apple cider vinegar every single day, you're really missing out on something big.

I pour it on salads, and use it in marinades.  I may have to resort to drinking it straight, but that doesn't sound tasty, and I don't want to take on additional discomfort.

I pour it over my horses' grain, along with flax seed, which I buy cheap in 40# bags at the local feed store.  It looks exactly the same as the overpriced stuff in the supermarket.

By the way, you MUST watch the Netflix documentary about the Mayo Clinic.  It's called something like, The History of the Mayo Clinic, or similar.  You can't miss it.

All hospitals should comport with the guiding principles of the Mayo Clinic. It's reprehensible that they don't.

This is the road of Sjogren's, undifferentiated connective tissue disorder, and the side-effects of medication.  It's also the road of taking things into my own hands, of online research and hopeful experiments with vitamins and herbs, which, (placebo or not) seem to have chased away the cellular gloom that had cast a pall over my afternoons.  It is the road of discernment, questioning authority, self-advocacy, and self-preservation.  It is a road less traveled, and it can be lonely.

The worst thing about disease as a road is how it fails, as a metaphor, to depict real life. A road is linear in its essence and fails to suggest how I might possibly live a rich life simultaneously, with or despite the accompaniment of chronic disease.

I do have a good life, but this is not a disease that will go away.  It does not take vacations. It has integrated and settled into my life...Something I didn't want, but now must keep: A white elephant.











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