Showing posts with label patients. Show all posts
Showing posts with label patients. Show all posts

Wednesday, October 23, 2019

I hate doctors, and I don't want to go (take two)




The title sums it all up. I hate doctors. When have they done anything good for me? Every time I go, it turns out to be "nothing".

So should I conclude that it will always be "nothing"? The "it hasn't happened up to now, so it won't happen in the future" philosophy sucks rocks because it's illogical. It simply isn't true.

I am at the age - God, I hate that word - where I maybe need to worry. This is the time people are told to have screening tests like colonoscopies (which I always call colostomies by mistake - I freaked out a friend once by telling her I was supposed to have one) which scare me half to death because I've been told they can be agonizingly painful. One health forum had a comment from someone who said she would take her chances with serious disease rather than go through that again.




My husband collapsed on the floor about a year ago, and paramedics and police rushed over. Made me wonder why everyone ignores me when I have a medical problem, but then, he's male and considerably older than me. It might be heart disease, after all (because we all know women don't have heart attacks!). In the hospital they put him through a meat grinder, doing every possible diagnostic test on him. The follow-up was even more rigorous, cardiac, neurological, urological, bowel and guts and everything else they could ream out.

The result was exactly nothing.

So I don't want to go to the doctor. I don't want to go to the doctor because I've had some symptoms lately that are probably nothing, but at the same time scare the hell out of me.




It's funny, because Bill and I have talked about how we can't afford to live as long as our parents did (all four them were well over 90). In fact, we may have trouble affording our 70s. We've joked that if we make it to 80, we'll kill each other, kind of like a duel where we both shoot at once. But what if he misses, and I don't? Will I be charged with murder, or merely self-defense?

It doesn't sound good.

I think about cancer, everyone does, or do they? I don't know, I don't interview everyone in the world, or on the street. The thing is, people with cancer are usually seen as heroes, brave souls who keep smiling no matter how much it hurts. In contrast, don't ever get a psychiatric problem, for no one will visit you in the hospital with flowers and balloons. They will not. Talk about being left alone, but that is what happens. At a time when you are at your most vulnerable and in need of comfort, people shrink back in dread. They don't even talk about it except in whispers. This is not an idle statement, but based on some 50 years' experience. But I am doubted there, too. How can I even think that people could be so callous?

But cancer, now! There's a great opportunity for bravery, for heroism, for stoicism in the face of pain, and lots and lots of warm get-well wishes. Flowers, candy, visitors to perk you up, tons of Facebook encouragement, and So Much More.




Do I sound just a little bit cynical? I have my reasons.

I don't think I have cancer. So why go? I have this niggling worry. Shouldn't I just ignore it? I have had alarming symptoms for EIGHT years, with no relief because I've been told "we can't find anything" and "there's nothing we can do". Do I want to be called a hypochondriac? But how can you be a hypochondriac if you hate doctors and stay away for years at a time?

There is something cold and frightening about the medical assembly line, the way you come out the other end feeling like dressed meat ready for the oven. There is a "NEXT!" feeling that only seems to get worse over the years. They literally call it "processing patients", and see nothing untoward about it. Too many patients, not enough time, because the equipment is absurdly expensive, the tests take forever and suck up resources, and it's usually for nothing. 

But we are stuck with it. In the past, if you had cancer, you just died. Probably horribly, because there wasn't even a good way to manage pain. Unlike today, when it's the banner illness that has spawned a million fundraising walks in every color of the rainbow, it was heavily stigmatized: people didn't even say the name. Probably this was fear, a dread that "something" had taken you over, colonized your body and was eating away at you beyond your control. This "something" would suck out the marrow from your bones, cause you to waste away to a skeleton, and probably drive away all but the most loyal family members who probably prayed that it would all be over soon.




All kinds of stuff has been written about illness, its social and emotional significance, etc. Usually the sufferer is blamed for not having it all together emotionally, for having "unresolved issues" (as if everyone doesn't have those). I wonder now if it isn't just bloody bad luck. Have you noticed how unevenly luck and blessings are distributed in life? Ain't it a bitch, and don't you wish it was different? People still get sick and die, in spite of all that fancy equipment. I've had five friends die in the last few years, and three of them were only in their mid-50s. One who was exactly my age at the time pulled his truck over, opened the door, and fell to the ground dead. Perhaps his fate was better than the woman who battled breast cancer for years, or Glen, one of the most beautiful men I have ever known, who escaped from a psych ward, swallowed a bottle of pills, and was found frozen to death beside the railroad tracks.




Oh, and that's another thing: the war imagery we use, especially for cancer. She "battled" breast cancer, she "waged a valiant struggle", and sometimes she "triumphed" or scored a "victory" over it. I wonder why we do this. No one questions it, and when no one questions something I just get furious because we are PEOPLE, not cattle! My feeling has always been that you should question everything, especially loony social trends. The war imagery not only renders the sufferer especially valuable for being a "good soldier" (and we still think the military is special, no matter what anyone says), it places the whole thing at a safe, fictionalized distance, as if we're watching a World War II movie on TV or going to the Cenotaph for 45 minutes to watch old men stand in the rain.

Ah, the stoicism, the smiling in the face of doom. I wonder why people feel they have to do this, why it has become such a cultural imperative. If I had cancer, I think I'd raise bloody hell and be so hard to get along with, NO ONE would come visit me (a situation I should be used to by now). Then again, maybe I'd be terrified. I know I would not be stoical. I'd be shit-scared and probably miserable from all the clinical attention, the being fed through machines with no one talking to you.




I've heard it said that quite often, when you get your diagnosis, the doctor comes in the room, says to the patient "you have cancer", then turns and leaves you sitting there alone. If I don't go, I won't hear that, will I? These guys are sons-of-bitches, aren't they? Are there any good ones? Well, OK, my brother-in-law, he's a Gunning man and as far as I'm concerned they're all great, but he lives all the way across the country.

If I don't go, I don't need to hear any of that shit. But if I don't go, this little scritchy-scrabbly feeling in my gut may not stop for a long time. If ever.





Friday, August 2, 2013

DON'T listen to your body!




As is so often the case, this post is something I adapted from my personal journal, which I will admit often amounts to a load of complaining. But keeping a journal is one of the sure symptoms of writerhood. I have had many a person sit down with me over the years saying "I want to be a writer", meaning they want to make effortless money and be an instant best-seller (it can't be that hard, can it?). One of the first things I ask them is, "Do you keep a journal?" Normally I get a blank look, a why-would-I-want-to-do-that expression, as if a journal must be written on pink Hello Kitty stationery with scented lavender ink.

Mostly people merely take stabs at writing, brief ones. Then they sort of run in terror, realizing that they will actually have to put their work "out there". As a friend recently told me about her own former ambition to write, it just got buried under the mundane tasks we all must undertake in the course of a day.




All this leads to something else. (Which is what I seem to do in this blog, though I can't tell you why. Steinbeck leads to Travels with Charley leads to why people treat dogs like babies.) So this is about my never-ending, awful sort-of-relationship with doctors, who have been poking and prodding my sagging old body for a year now trying to figure out why I am having this persistent, nagging, sometimes severely disabling pain.

It's getting in the way of jumping in to preparing my novel The Glass Character for publication (which I wish I could enjoy more). This is what I wrote this morning:

"I want to get the medical stuff over with, which it should be next week when I get told there’s nothing wrong with me again. I have a theory it’s a low-grade infection, but I doubt if he will give me anything for it, will likely say “it’ll go away on its own” when I have been in pain for nearly a year now. They said the same thing about the infuriating ear symptoms which I’ve now had for 13 months. Things do NOT “go away on their own” in many cases, but doctors now let things fester for so long they become ingrained and chronic and really WON’T go away. We then have a "nuisance patient", a hypochondriac completely obsessed with imaginary illness. But someone has commanded doctors from “on high” not to prescribe antibiotics. They’ve swung from one ridiculous extreme to the other, and in both cases it’s to get you out of the office FAST."






So how many specialists or procedures HAVE I been exposed to? Let me count the ways. Gastroenterologist (God, these things are hard to spell). Gynecologist. Ultrasound. Colonoscopy. Ultrasound again, because they couldn't find anything the first time, and now urologist/cystoscopy (can’t ever remember how to spell that one). I have also been to a nephrologists and an otolaryng-whatever-it-is. All uselessly. Each person takes a part of the body, and they are never co-ordinated or put together in any way. They’re not supposed to be. Each body part must get sick in its own way, and if it gets sick outside of certain strict boundaries, then you’re not sick, or at least that part of you isn’t. If you have a condition such as a bladder infection and only have three symptoms out of five, then you don’t have a bladder infection and will not be given antibiotics.

Oh, antibiotics! Like Valium in the '70s, doctors handed them out like candy until relatively recently. Patients wanted something to relieve their fear and distress about being sick. They wanted to come away with something. Doctors wanted them the fuck out of their office so they could go on to the next patient. So they went home with a prescription.






Then all of a sudden, we are being told WE were wrong to accept all those prescriptions for all these years. WE were wrong to seek a fast and easy way out of disabling symptoms. We should have just put up or shut up, because there was probably nothing wrong with us anyway.

Suddenly, in spite of everything our doctors had been telling us for decades, antibiotics were just wrong.



It still comes at us from every side, ads on TV with cute but shaming slogans like, "Not all bugs need drugs." It's a kind of finger-shaking admonishment to the public, because for God's sake didn't we create this situation to begin with? The public, being weak and self-indulgent, demanded antibiotics so vociferously that they created a race of Superbugs which are now resistant to medication.


We have rendered antibiotics almost completely ineffective. How does that make us feel?

Doctors had to stop acting like free vending machines for this seductive candy because "someone" ordered them to, some medical association or other. "It will go away on its own" became the new mantra. This got patients out of the office nearly as fast as "Here, take this prescription for amoxycillin".

Now, you can have pus running out of you and feverish red inflammation and strep throat (and my granddaughter, then three years old and running a fever of 104, might have died from it: my daughter, a dragon when she needs to be, INSISTED she be prescribed antibiotics, which cleared it up completely in two days), and the doctor will not prescribe antibiotics. Once again, the crushing weight of shame is applied to us as she tells us something we have already been told 100 times. "Patients ruined antibiotics by taking them too often. It will go away on its own."






There are two things my doctor never prescribes: antibiotics and pain relievers. When I told her I'd had significant and even severe pain for a year, pain that sometimes prevented me from functioning well, she said, "Advil is the drug of choice."

"But I've been taking Advil for a year now and it has no effect at all."

"Try Tylenol."

"I've tried them all. None of them work."

"Advil," she said, a little testily.

"Can't I have anything stronger?"

Oh, it's the facial expressions, the bodily shifting, the "I know I'm dealing with an addict cadging drugs" manner that gives it all away.









"Advil is the drug of choice." (Meaning: if Advil doesn't work, I am having the wrong kind of pain and need to set it straight. Or else I'm lying.)

Another time she asked me the doseage I was taking and I said something like 800 milligrams. "That's too much," she said. "But the lower dose doesn't do anything." "Always take the correct doseage or you'll damage your kidneys." But the "correct doseage" wasn't doing any more than the so-called overdose anyway.

I have enjoyed good health for most of my life and have stayed away from doctors whenever possible, so I can hardly be called a hypochondriac unless such a damning stereotype can develop in a  few months. I hate taking pills, and it does not occur to me to abuse prescriptions. I have dreaded developing some sort of vague but persistent, painful medical condition that no one can get to the root of. And now it's here. My own theory - and who gives a shit what I think anyway, it's only my body - is that this is a low-grade bladder infection which has been flying under the radar for a year. But doctors refuse to see it that way. "Your urine test is normal," my doctor said, furrowing her brow and sitting back in that "get out of here and go directly to the psych ward" way. If my urine test is normal, I cannot have a bladder infection and have to go home and behave myself.









Over and over again I hear/read the same advice from people: Listen to your body! If anything feels amiss, go see your doctor immediately! I am here to tell you that you won't be in her office for long. Your symptoms will have to escalate until you are in severe enough pain to wait months to see a specialist, who will tell you there's nothing wrong anyway. The cancer diagnosis won't come until it is far too late to treat it. Then you will be asked, "For God's sake, why didn't you DO something about it?"








Is there nothing you can do? Why are you stupid enough to ask? Take Advil, which should get rid of all your symptoms. It's the drug of choice.

Friday, April 20, 2012

The Bloodletting: or, Day of the Vampire



This is still so traumatic that I haven't even been able to write about it in my private journal. I sit here this morning after a lousy night, waking repeatedly and full of anxiety, trying to get through my giant mug of coffee and make sense of it all.



I'm not sure yet if I was the victim of medical mauling, or my own aging physiology. Though the pictures here are trying to help me play this for laughs, it wasn't too goddamn funny.

For medical reasons I won't go into, I need to give blood samples at intervals for analyses of cholesterol, glycogen, that kidney stuff I can't remember - all that shit - so there's no way around this visit to the clinic and the dreaded arm-stick.






Does it make sense to you to say I've never enjoyed this? Eons ago when I was pregnant, we first ran into my little problem: the technician (I think it was a nurse back then, before every medical procedure was farmed out to a different specialist)could not always score a direct hit on a vein. This involved (if they were shitty at it, which most of them were) repeated poking, twisting, trying the other arm, and a growing irritability towards ME for holding things up with my difficult veins.



Back then, if it didn't go well, I'd really hold things up by fainting. By now I've got past all that, but in recent years, after a stretch of relative normalcy (i.e. only five or six tries, leaving a black and blue mark 2 or 3 inches in diameter), things got much worse.




At first it was intermittent: some days the technician (usually one of the more competent ones who show up randomly on good days) seemed to get it bang-on and it would all be over relatively quickly. Sometimes it took forever because the needle was not all the way in or in at an angle, and the slow, painful dripping would go on and on. I needed to fill four or five of those little bottle-y things for some reason, and I wouldn't watch, though the technician acted surprised that I didn't want to eyeball the whole procedure (complete with a needle lifting up the skin in a point as it cranked around and around and around in a futile search for a viable vein). I had learned to cope, and as usual my coping methods were suspect and probably wrong.


There were some highlights, or lowlights to this process. Once a hysterical-looking technician had an anxiety fit and asked me, almost wild-eyed, if I was always like this and what was the matter with me. She had insisted on applying the tourniquet very loosely on top of a thick sweater to avoid bruising, though none of the others ever did this. She seemed to be sweating with dread. It took her a long time, but at least she didn't call in a second technician, something that seemed to be happening with alarming frequency.

To call in a backup is a disgrace because it makes them look incompetent, wastes a lot of time (there are other customers waiting, after all, customers with normal-sized veins),and make no mistake, *I* am the cause of this holdup and making everyone look bad. I'm making it look as if they don't know their stuff!




The fact that every so often someone would show up, touch my arm with a fingertip, aim, shoot, and hit it bang-on with no trouble, drawing the sample in 2 minutes, did make me wonder about competence and dealing with non-standard veins. But in reality, my veins were treated like an aberration, something they had never seen before, as if I had walked in with two heads.

The explanation, if I got one at all, was that my veins were small, deeply set in my arm, and moved around a lot (probably because they were small and deeply set in my arm). Trying to inflate them with a super-tight tourniquet seemed like a good idea to me, but they wouldn't do it because their training told them they weren't supposed to.




The over-the-sweater-sleeve tourniquet technique may be OK for a normie, but for me it's a disaster. But I can't tell them to make it tighter, can I? I will get that "whaaaaaat?" look. And why don't they do that little two-fingered tap-tap on the spot any more? Will it be too traumatic and painful? Will it cause. . .  bruising? But it can't cause the kind of lead-pipe black-and-blue mark I come away with after a typical bloodletting ordeal.

Can I even pick a "worst"? At least up until yesterday's debacle, that would be the young trainee who poked and prodded in the usual way, skidded over my arm which finally began to bleed furiously (though not into the tube), giggled, yanked it out, halfway capped the tube and began shaking it violently. Blood flew through the air and splashed all over the front of my blouse, ruining it. She giggled some more. "Gee! That's never happened to me before!"

Translation: there must be something wrong with YOU. You are a freak. A nineteen-foot-tall Atomic Woman stalking Port Coquitlam.




When I try to tell this story to anyone with a medical background, they say something like, "Oh, that didn't happen. The cap can't come off like that. You couldn't be sprayed with blood." It's great to be listened to, isn't it? How I wish now that I had immediately complained to the front desk, ripping open my jacket to expose the gobs of gore.

So on it went, every three months forever. The bad episodes were intermittent, and I found tricks that I thought worked, kneading and slapping the crook of my arm, swinging my arm as I walked over to the clinic, pumping gallons of water like someone said I wasn't doing. 

Whistling in the dark. Putting out a forest fire by peeing on it. Peeling a turnip with a stone.




So yesterday it gets bad. WAY bad. I arrived on time, sat dutifully in the waiting room and was able to go in almost right away. I said a little prayer, not so much for my inaccessible veins as for the idiots who couldn't find one and turn on the tap.

This was it, the day it got more than bad. WAY more.



The technician walked in. She was one of the more senior ones and seemed to know what she was doing. But on her first poke, her face fell in that dreaded, all-too-familiar, this-is-going-to-take-up-way-too-much-time way.

"Is the other side any better?" She had done me maybe fourteen times already, but acted as if she had no idea who I was and addressed me as a complete stranger.

"No."

"Let's try it, then."

No dice, just nothing. That little gleaming device was like a drill-bit, twisting around and poking and jabbing. I tried not to wince, but it hurt like hell and I knew it wasn't supposed to.

"Sorry, am I hurting you?"

"Oh, no."

Then came the dreaded "calling in another technician" manoevre.




A younger woman with long dark hair and glasses, very poised, very serious, almost doctor-like in her sense of entitlement, swept in. A resident fulfilling a training requirement, maybe. (She was even holding a clipboard.) There was something Special about her. She was the one they called in for Special Cases, when someone became hysterical, fainted or attacked someone in frustration after being fruitlessly drilled for half an hour.

"Let's see what we have here," she said, crisply and calmly, not making eye contact.







She shook her attractive medical head and began to poke into me again.

"Oh, sorry, no, we can't. . . " Weirdly, the first technician hung around. That had never happened before.

At one point I noticed her pressing on my opposite wrist, which already had a huge, godawful plastic clamp on it that left a red welt.

After ten or fifteen pointless minutes, during which I gabbled on and on in explanation, irritating them as I always do when I try to explain anything I clearly don't understand (though not explaining would be even worse because I was being unco-operative and sullen), they gave up on the traditional method. The two of them were beginning to turn away and whisper to each other. I was alarmed. I heard words like "butterfly" and "back of the hand".

They used the butterfly. I've had the butterfly before, and it's no big deal, just another method of jabbing your flesh to suck up your blood, but the butterfly didn't work this time.

At all.

Not a drop.



Now they were really nonplussed. (Yes, that is correct, so don't correct me! Look it up.) They kept looking at my right hand and pressing down and pumping it. Anything there? You would have thought so: I'm old enough now to have those blue veins you see on little old ladies.

"Will this hurt?" I shouldn't have asked: I'd had the back-of-the-hand treatment before, and I knew it hurt.

"Yes, it hurts most people, but we'll try to be quick."

Quick, like. . . ten more minutes?

I stayed calm, but at a cost. I prayed they would get something, even a little bit. Suddenly I remembered a dreaded word as they stepped away to whisper and natter at each other yet again. 

Cutdown.




I knew that if they couldn't get blood any other way, they just used a scalpel and cut you open. Presumably they tied off the vein after the Niagara Falls of blood gushed across the room.

"Oh, no, that's only in the hospital." The two of them, alarmed, looked at each other uneasily. She was having delusions, wasn't she?

Meanwhile, the hand thing wasn't working at all. I had my eyes closed and willed myself to relax, but the first technician took it as dread and panic and asked me - no, I am not kidding about this, "Would you like me to hold your hand?"

"Oh, wait. I think I see something."

A drop!

"Uh, yes, but. . ."

"It's very, very slow."

Drip.(25 seconds)

Drip. (25 seconds)

Drip. (25 seconds)

Drip. (25 seconds)

It took almost half an hour to partially fill a vial, and they were not at all sure it was enough. I prayed they would put the cap on before they shook it. There came another round of flustered, whispered consultation.

I was a freak, a weirdo, something they had never seen in their lives before.

THEY WERE TRYING TO GET BLOOD FROM A TURNIP.




Then came the reasons why, all having to do with me. "You're dehydrated, dear. You'll have to start drinking water."

I didn't know how to tell her that I always pound back water before a test: it helps my creatinine levels. (THAT'S the shit from my kidneys.)

"Maybe you're a little bit anemic." My hemoglobin was always routinely tested, and it was normal. Had never been abnormal. But they treated me as if they could see through me.



"You do look a little blue," the entitled one said.

I can't imagine why.




No one apologized, but there was a funny feeling *I* should have, for taking up 40 minutes for what should have been a 3-minute procedure. At least there was no indelible gore-splatter down the front of my blouse.

I decided then and there to change clinics, but what good would it do? If I started fresh and just told them nothing, might they just score first try? Bingo?




Of course I had to look all this up on the internet, and two seconds later I hit pay dirt. It was a forum about donating blood, and one woman recounted in frustration being turned away because she had "bad veins".

"My veins are small and deep and they slip around and they can't seem to get into them at all. The butterfly doesn't work, the back of the hand doesn't work. Nothing works."

Another post: "Why are my veins so hard to access? The technicians are getting really annoyed with me. The veins are small and deep and they slip around and they can't seem to. . . "

Fifty thousand entries later, all of them virtually identical, a picture was emerging.




SURPRISE. Some people's veins are not very accessible because they are . . . you get the picture. But at the clinic, they were anxious, astonished and even irritated to find that they just couldn't get me to act like a stuck pig, no matter what they tried. In fact they behaved as if they had never seen anything like this in thirty years of experience.

I have often had the experience, when trying to explain something to a medical person, that they think I'm  making up stories. At very least, it's hypochondria, being dramatic and inflating my symptoms out of sheer narcissism. Was my body lying to them this time, I wonder? Being narcissistic, or deliberately making a fool of them? Apparently.




Almost worse is something I hear often when I make the mistake of "sharing" my experiences with anyone. The listener's eyes fly open and they say, "Oh, that's never happened to ME!" This is called "empathy" and is more common than you might think.

Though such people always advise you (right after telling you to throw away those pills and take milk thistle) to make medical people do what you want, it's a great way to attract the hostile stare. And whatever you do, do not ever, ever, EVER mention the internet to a doctor, or their eyes will glaze over. "Don't go on the internet," I've been told, how many times? Medicine hates the information age because it penetrates the hallowed brotherhood that began eons ago with the local shaman.

I didn't cry or whimper or faint, though many people routinely cry and whimper and faint even when their blood-draw is quick and painless. But I don't look forward to going through this every three months. Hell, the back-of-the-hand thing is foolproof, it HAS to work!

I can't go back there because, against reason, *I* am embarrassed. I will try another place. But if they come at me with a scalpel, I am out of there.





Post-blog observations. It's been a while since I originally posted this, and yes, I DID find another lab. I didn't say a thing about my "little problem" because I wanted to see what would happen if they didn't know about it.

Magic! The technician, a brisk, no-nonsense lady with a Germanic accent, whisked into my vein and out again in about 30 seconds: no poking, no pain, just a direct stab and a steady flow of blood.

Miracle of miracles! But it HAD to be a fluke. I went back in three months, got a different technician, but exactly the same results.

This was a magic place!

And it went on for, oh, a year and a half at least. Pay dirt every time. Every three months, they always struck oil. And then. . . something happened.

I think it was a trainee or something, and she had some problems with me. She asked me all the usual questions: "Has this happened before? Does this always happen?" After all the usual drilling and twisting and pain, some blood came out. Slowly.

Then when I was having my colonoscopy, they immediately gave up on finding an arm-vein and stuck it in the back of my hand. Same with my CT scan. Something was afoot.

Yesterday, it collapsed. The whole structure of hope and freedom from the sickening, accusing questions came crashing down on me. They couldn't get blood. "Does this. . . you know. . . has this. . ." The consternation, the projected shame at feeling incompetent which was somehow meant to be absorbed by the patient.

I have no idea what I'm doing: sucking my veins in, then letting them out again? I always drink water, etc., blather blather blather, and stand upside down and shake myself like a ketchup bottle for an hour before the drilling. No dice. Nevertheless, they always mention something I "should" be doing, some vital preparation no one told me about before, to avoid holding up the whole enterprise.

Last night I got a call from the lab. That's right. From the lab. There was something wrong with the sample they had finally, laboriously drawn. It had clots in it, making me think it had come out too slowly or had been contaminated in some way. So on a Saturday morning, because they close at noon, I have to go back in and go through the whole ordeal again.

And be asked, in puzzled half-contemptuous amazement, "Has this ever happened to you before?"


 



Dear Sir or Madam, will you read my book
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