Category Archives: health/pain stuff

doctoral contempt

I had a visit recently with the most amazing diagnostician I’ve ever met. This pain doctor, who himself said that he doesn’t know much about migraines or their treatment, nevertheless knew all about & diagnosed mine on our first meeting, in less than 30 minutes! Amazing, eh? I went to a neurologist back in NC for almost as many years as I had minutes with the new guy, a neurologist who is a headache specialist & keeps up to the minute in the field of pain & migraines. That neuro saw & examined me hundreds of times, did all kinds of tests, tried literally dozens of medications, procedures, and treatments, had me keep HA & food & pain & all sorts of hour-by-hour diaries, consulted with fellow headache specialists, and in the end all he was able to do was to declare the migraines intractable and try to treat the symptoms as effectively as possible –we’ve tried every medicine anyone ever heard of that supposedly was prophylactic for migraines or reduced their frequency or severity, including some that were purely WAGs, some of them multiple times over the years.

So on one side I had this brilliant, thoughtful (in both meanings of the word), physician who specializes in migraines and spent decades trying to deal with mine. On the other there’s the pain ‘specialist’ who may not even really believe migraines even exist, but by golly he was able to pinpoint in moments the truth about mine: they’re not intractable, they’re not being treated appropriately, and they’re not really even that bad.

As galling as it is to have this cretin make this snap judgement –and it was very judgmental– about these nightmares that I’ve had to deal with my entire adult life, what really burns my buns is the fact that the jerk put down, as the official diagnosis, “migraines, not intractable.”

Now, NC Neuro first suggested I consider applying for disability in about 1989. I was missing six to twelve days of work per month. I spent those days huddled in bed in a dark room with ice bags on my head; as an added bonus, some of the time I would spend hours on end vomiting with such violence that I’d end up with black eyes because the  pressure caused all the blood vessels around my eyes to burst. It took days to recover, only partly because I always end up severely dehydrated because I can’t even suck on ice cubes when the nausea is bad (yes, I’ve switched tenses; it’s still going on, nearly thirty years later, except there’s some months when I lose more like twenty days a month to indescribable agony).

Anyway, the disability. I was utterly appalled and infuriated when NC Neuro brought it up; I was not a moocher or a sponger, I’m an independent & responsible adult who does not need to be taken care of. The very idea offended me on such a core level that I was rather surprised; I’m not generally judgmental about people who need assistance, it’s just that I wasn’t and would never be one of those people.

Well, the last time I worked, I spent nearly seven out of the last eight weeks of the job in bed, under ice, praying for death. It made for a kick-ass diet, and I probably should’ve been taken to the hospital at least for the dehydration, but I survived. Then I applied for disability. The day I sent in the application I spent most of the time throwing up from the incredible, grinding sense of shame I felt. Friends & my docs told me it wasn’t my fault, that I’d worked for many years around the blinding pain (& sometimes with it; I worked at my lab bench while wearing two pairs of sunglasses because the light was so painful). It was not a confession of weakness to admit that I wasn’t able to work because of the horrible headaches which I’d tried everything to stop –or even reduce.

It sure felt like an admission of weakness & worthlessness.

But along comes this little twerp of a physician who clearly had made up his mind about me before ever laying eyes on me. He saw that I was taking opioids, which are generally not considered the best option for migraines, and passed judgement on me and on my long-term doctor (who agreed to try opioids; he wsn’t a fan of them either, but he knew me, knew my conditions. They helped tremendously and gave me a few more years working). The fact that The Twerp obviously considered me a whiner or faker or whatever pisses me off enough, but it’s far from the first time that’s happened. But the fact that he basically declared that my NC Neurologist is incompetent seriously pisses me off. That poor man worked like a dog (a brilliant dog) for decades to try and help me, and I know I’m a frustrating patient. Not because I disobey directions or am not trying to get better, but because nothing he or I did worked to get me better. I’m firmly convinced that if anyone in the world could’ve come up with a way to do away with the headaches, NC Neuro and I would’ve found it. He’s a brilliant, kind, empathetic physician who treated me like a real human being, moreover like a human with a functional brain (& let me tell you, that’s an incredibly rare way for a physician to treat a patient). And here’s this schmuck dispensing condemnation of me and of NC Neuro; pah!!

Also, I can’t help but worry that The Twerp’s diagnosis –that insidious little “not” that he just had to put in front of “intractable”– will cause trouble with the disability payments. Because the migraines have not gotten much (if any) better since I’ve not been working. It is a relief not to be letting my employer down or feeling guilty &/or overwhelmed about missing work, but that relief hasn’t translated to a decrease in headaches.

We are in such a position of powerlessness to physicians. And many of them revel in being in the power position so much that they lose all compassion and humanity –assuming they had any to begin with. I spent most of my working years as a medical research technician, the person who does the laboratory work. After my first position I advanced to a point of being substantially responsible for designing the research plan; my PI (Principal Investigator) would tell me the kind of information they wanted to figure out, I’d go determine which procedures would best to get it. I worked for years at a lab attached to a teaching hospital, so I had the dubious honor of training newly minted MDs in laboratory techniques. Out of the dozens I trained in the lab, I recall only two who were willing to admit that a mere female, one with only many, many post-graduate courses (but not a Master’s –I was ABT– or Doctorate), could possibly have anything to teach them. These were people who didn’t know a beaker from a bean, but by God, they knew it all anyway.

MD arrogance is a stereotype for a reason; many MDs are arrogant. They firmly believe they are infallible, know everything there is to know, and can evaluate a patient’s mental, physical, and substance abuse status in one micro-second glance. After that, the patient is pigeonholed forever. I have contracted weird and rare health conditions throughout my life; rare indeed is the physician who will spend an instant listening to me say explain them. They are taught in Med School that “when you hear hoofbeats, think horses, not zebras.” In other words, a common condition that seems to fit presented symptoms is the more likely diagnosis. But here’s the thing: zebras do actually exist. Finding a physician who believes in zebras has gotten orders of magnitude more difficult over the last 2-3 decades.

Then there are physicians like The Twerp above, who refuse to even believe that horses exist. That patients are liars. Whiners. Fakers. Subhuman. Deserving not only not being listened to, but not even being treated politely. No, not all physicians are this appallingly narrow minded and bigoted, but given the current insane hysteria gripping the country, more and more are falling into snap judgement –even before attempting a diagnosis, if they even bother with that.

The Twerp could still come back to bite me metaphorically on the ass; I never went back to him, but that “not intractable” determination, based upon absolutely nothing other than his own arrogant prejudice, still lurks in my records somewhere. There is nothing I can do if it rears up, sea monster-like, to destroy my life. This is not hyperbole. We are even more prisoners of medicine than ever, even if we don’t get kidnapped and locked in a hospital like some have been. These doctors hold not only our physical lives in their arrogant, bigoted hands, but our very existence. Lab rats have greater protection against abuse.

 

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Dogs; adore them, be terrified for them

those big black eyes…

Brief update on the travails of Kenta the Wonder Eskimo. Hard tho it is for those who see him to believe, he’s losing hair at a highly abnormal rate. His fur is much thinner than it was this summer when the temperatures were in the 100s, & that just ain’t right. The hair loss has accelerated just over the last few weeks, so I have to wonder if it’s a side effect of one of the treatments for the SLO (auto-immune disorder) or something else.

Here he is in all his heavy-fuzzed glory enjoying his kiddie (Kentie?)pool in August, when it was over 100.

Here he is in all his heavy-fuzzed glory enjoying his kiddie (Kentie?)pool in August, when it was over 100.

One of the things I’ve worried about since starting the SLO regimen is the diet; SLO attacks can be triggered by ‘attack’ proteins, so the dogs are put on very restricted diets –usually proteins that they’ve not been exposed to before, so their immune systems aren’t predisposed to get hysterical. A common restricted diet is rabbit & sweet potato, & he’s been on just that for… about a coupla months. I was concerned about Vitamin A hypervitaminosis, something I learned about after reading a number of books about Polar Exploration. There are some astounding, riveting books about the brave & insane men who explored the Polar regions & attempted to reach the Poles, & one of them is “Racing With Death,” about Douglas Mawson. Mawson was an Australian who ended up, at one point, plodding alone for about a month for hundreds of miles through subzero Antarctic wastes. Running out of food, he did what the explorers did in those days; ate his sledge dogs. Not knowing that there’s a reason that the Inuit never eat the livers of their sledge dogs, no matter how dire the situation, Mawson ate the dogs’ livers & developed Vitamin A hypervitaminosis (though they had no idea in those days what that was). The symptoms of what Mawson went through from this excess of vitamin A are unbelievably hideous; one of the more gruesome was the shedding of great sheets of his skin, including the entire bottoms of his feet (he felt an “awkwardly lumpy feeling” in his feet as he was trudging along, stopped, removed his fur boots, & found the compete soles of both feet had separated. He smeared lanolin on them, wrapped them back in place with string, put socks & boots back on, & trudged on into the frozen white. Folks were different in those days). He also lost huge sheets of skin from thighs, groin, & elsewhere.

Oh yeah, Mawson also suffered hair loss. (You knew I’d get back around to the point eventually). Hair loss is also a symptom of excess Vitamin A. Only thing is, just how much Vite A is too much in canines is poorly understood. Like all the fat soluble vitamins (A, E, D, K), bad things can happen to any body when you dump too much in, because it doesn’t flush out like the water soluble vitamins (which is only one of the many reasons the whole ‘megavitamin C’ craze is asinine; all you do is supplement your sewer system with whatever Vite C your body doesn’t need at the time, since it is literally flushed out with bodily water).

So, nobody really knows how much is too much when it comes to Vitamin A in dogs, though they’re not as easily overloaded as humans. Since it’s another stupid holiday in the middle of a glut of holidays, I can’t talk to the vet til the middle of next week, to start trying to figure out which of the myriad possibilities might be behind the hair loss. Many of the possibilities aren’t too bad –hypothyroidism is one, tho he was just tested a couple months ago. I’ve been hypothy for over 30 years, & it’s no big deal. Many of the possibles are horrific…Canine Cushings is one, & since my previous Eskimo died of that, to say that this hasn’t helped my stress levels is one of the understatements of all time.

Portrait of the sweetie as a young dog. Is it any wonder that the first time I saw an Eskimo puppy I had to have him? This is Kenta at about 10 weeks.

Then there’s stress: could he be picking up on my drastically raised stress levels from recent catastrophes, starting with his own SLO diagnosis? How’s that for cruel irony? I lost about half my hair before I finally had the sense to jettison my ex-husband (the one I refer to as “The AntiChrist”…he was not a nice person). It grew back.

There’s a constant, underlying level of stress involved in loving dogs (and cats), at least there is for me.  Like the near-subliminal hum of being under high-tension wires, the visceral terror of knowing that I could lose my beloved friend is always there, though usually I’ve at least had the comfort of it being reduced when the animal is very young, like Kenta –he’s not yet 3 years old. Anyone who responds to this idea with something like “good grief, it’s just a dog [cat]” is someone who might as well be from a different planet on this subject; for me, no he’s not “just a dog” & Foster is not “just a cat.” They are beloved, adored friends, always true, innocent of cruelty or evil intentions. They are a part of my soul, a huge part of the reason I’ve been able to deal with chronic pain and numerous health disasters of my own.

Kenta especially, in the last year or so, has literally kept me from seriously considering checking out of this miserable, hopeless existence (i.e. suicide).  No matter how hard I try or what I do, damn near every time I turn around some great load of cosmic crap dumps on my head (or house or car) from out of the blue, and I don’t have the psychic or especially the financial resources to shovel out from under repeated catastrophes.

My doctor first recommended I apply for disability because of my migraines in 1989; I was so appalled and horrified that I damn near fainted; I wasn’t going to stick out my hand for someone else to put money in it. I tried to keep decent jobs for the next 20 years, despite being completely out of action 15-40% of the time, with no warning, never any idea when or how long I would be struck down with literally blinding pain that kept me in bed for up to a week at a time. Achieving professional or financial stability & resources under those conditions ain’t possible. I surrendered in 2009, when I spent the last 7 out of 8 weeks of my last job unable to get out of bed except to go to the bathroom. I wanted to die from the shame of it…somehow I ended up with a deep conviction that it’s valid for other people to need help, but I’m supposed to be able to take care of myself.

So now I have an old doublewide trailer that’s in okay condition. I live as cheaply as I can; I get my clothes from the free church resource or garage sales or St Vinnie’s (Goodwill is too expensive). I try to raise money by selling Mom’s jewelry & stuff I make on Etsy and ebay. And I have my dog and my cat. They are my luxuries, where I ‘treat’ myself. When I sell something online & am not too far behind on too many bills, I buy dog or kitty treats to celebrate.

Foster hangin' in his window hammock.

Foster hangin’ in his window hammock.

And all this crap keeps happening, and I could deal with that, but with crap happening to Kenta, the level of terror gets so overwhelming I can barely breathe. Love so great comes with a fear of loss so huge, I sometimes wish I’d never gotten a dog or cat to begin with. But the joy I get from every minute with them makes me reconsider that. Then they get old or develop health problems young, and the cycle turns again and I fold into a fetal ball of fear.

Kenta is telling me it’s time to stop fiddling with this useless thing that has nothing to do with him and start paying attention to the object of my affection, like, “Take me for a walk, Mom!” Wise folks listen to their heart, I s’pose. Or their dog…same thing, sometimes.

Eskimo move known as the "Shnozz snow plow." They have more fun in snow than anybody anywhere.

Eskimo move known as the “Shnozz snow plow.” They have more fun in snow than anybody anywhere.

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Dat ole devil pain & dem evil, evil opioids

I just saw the article “When Prosecution Replaces Prescription” in Pain Medicine News (http://www.painmedicinenews.com//ViewArticle.aspx?d=Web%2bExclusives&d_id=244&i=June+2014&i_id=1066&a_id=27622&tab=MostRead) & I (momentarily) felt hopeful. It certainly starts out promising, mentioning the shame and stigma associated with chronic pain and how that leads patients to (among other things) try to conceal their chronic pain…though I do note with a weary sigh that in selecting the pronoun for the hypothetical pain patient, they just had to use “she.”*
At any rate. The article goes on to suggest that though opioids are evil, vile things that for the most part shouldn’t be given to anyone ever (I’m paraphrasing), there really is a subpopulation of cp sufferers for whom evil opioids are the only option for relief, and therefore those evil opioids (EOs) need to remain available to that population (I’m paraphrasing a lot; henceforth unless you see quotation marks, that’s what’s happening).

However, of course, and naturally, the article has to then leap up & shout about how horrible the abuse of evil opioids is, how tragic, etc. It mentions another tactic in our wildly successful ‘War on Drugs’  (insert  large sarcastic sneer here) now being tried is to prosecute doctors for prescribing the EOs. This tactic is in addition to prosecuting & persecuting patients, also blackballing them, treating them like criminals or malingerers or lazy whiners who just wanna get high, as well as all those other massively successful tactics tried thus far.

I know it’s tragic that people do awful and criminal things to get their high, and sometimes kill themselves  with it, but I gotta confess that my sympathy for those types is limited. I earned a graduate degree in dealing with an addict long before I ever even started high school, and one of the many lessons I learned about them is, they are gonna get high no matter what you do, no matter how you punish them, and even no matter how much you punish and make life miserable for legitimate pain patients. Let me repeat the crux there so it stands out:

They. Are. Gonna. Get. High.

I learned this direct from the horse’s mouth as well as from observation. I watched my decent, intelligent, wonderful parents and then my mother battle my vile, four-years- older sister (henceforth known as “The Spawn of Satan”, or TSOS) for years. That fight destroyed my parents’ marriage, their health, and nearly their minds. When TSOS was in her mid-to-late teens my mother and stepfather forcibly (in all senses of the word) put her in rehab, multiple times. Every time they did it, she told them with impressive firmness that it would do no good, they were wasting their money, because the moment she got out she was going straight to her connections and get high. No matter what they did or how much money they spent, that’s what was going to happen. And it did. Repeatedly. When she finally was out of the house –a bizarre, tornadic combo of her leaving voluntarily and being forced out (with stops along the way for her to physically attack my mother, among other charming events), she ran out of people to give her money and got bored with trying to steal it, and became that staple of old TV shows, the hooker on the street who turns tricks to support her habit…she had a pimp who beat her up and everything.  Because she wanted to get high (and no, I’m not going to touch upon the argument of ‘want vs need’ here; that’s endless, unresolvable, and basically irrelevant).

Trying to deal with an addict destroyed my family, nearly destroyed me physically and probably did (at the very least) screw me up mentally. Instead of following in TSOS’s footsteps, I tried to go as far in the other direction as possible to ‘make up for her.’ No matter how perfect her grades are, how quiet & good & well-behaved she may be, how helpful or kind or teacher’s pet-ish or anything else, one sibling cannot be “good enough” to balance out bottomless evil. Can’t be done. Also, no matter how wonderful parents are, if they’ve got one Tasmanian Devil and one studious, house-trained mouse, the mouse is going to be left alone a LOT.

Anyhow, I digress. I know from addicts, all too well.** No matter how much you torture and threaten and harass and generally make cp patients’ lives miserable, you’re not going to keep those high-addicts from getting high. Stop manufacturing pain medicines entirely, establish a perfect ban at the borders so that not one single molecule of actual pain medicine reaches the US, those folks are going to get high on SOMETHING. Heroin, shrooms, sterno, glue, paint, gas, there’s a zillion things that people have found or made over the centuries to get high with/on. It’s been around since before humans, when birds and animals flock to fermenting fruit and stagger around drunkenly, dolphins sucking pufferfish toxins, lemurs on centipedes, etc…as the song says, ‘Birds do it…even educated fleas do it,’ though I ain’t talking about falling in love; I’m talking about getting stoned out of their gourds.

I’m not saying all these folks (or critters) are hopeless and should just be locked up or euthanized or something, just that it does not do them any good to make life impossible for legitimate pain patients. The current tactics in the ‘War on Drugs’ isn’t accomplishing much of anything except punishing folks who’ve committed the unforgivable sin of getting injured, of being born crooked or with syndromes or screwed up physiologies.  We are not trying to get high, unless you consider that term to mean reducing daily, constant, grinding agony to tolerable levels so you can actually do something than other than pray for relief or death is “getting high.” It does feel good to go from every breath an agony to feeling okay enough to stand up and walk the dog or plant a flower, I am forced to confess. I don’t get stoned or giddy, but sometimes I do actually feel almost happy when the overall pain level decreases to the point where I feel somewhat human, like a relatively functional being who could actually enjoy life somewhat for a few hours.***

And as we all know, somewhere deep in this psychotic, quasi-Puritanical, extremely judgmental society, a considerable number of people are profoundly convinced that it’s wrong to feel good if that state is achieved by anything other than say, making money (especially if you do it by grinding little people under your spiked soles –that’s cheered!). Pain builds character. Everyone feels pain at times, what makes ours any worse? Other people deal with pain without opioids. Other people also treat it with things other than opioids –why don’t you?!?! (Soon I’ll attach a list of the non-EO things I have tried…it’s a long list & I’ve been typing way too long).

And so forth. It’s even better with migraines; non-visible, non-testable, mostly non-provable. Surely they can’t really be so bad that you have to stay in a pitch-dark room for days on end, not even sipping water due to the violent nausea, at times literally beating your head against a wall because it does feel better between slams.  After all, everyone gets headaches now ‘n’ then, why am I such a wimp? Just stop whining & faking & get up!! Besides, everyone knows that opioids are not the ideal treatment for migraines; try some of the recommended treatments, for heavens sake! (another, even longer list).

Yeah, I’m a pain suffer. Debilitating, excruciating, multi-faceted pain. Pain that rules and suffocates my entire life, my complete soul. Opioids are the only things that help, and I’ve tried every single freaking remedy that anyone has ever thought of for several types of pain. Well okay, there is one I didn’t try,  a sure-fire headache remedy told to me by a sweet, older Chinese woman on a plane; get fresh cow’s brain, boil overnight, discard the water & boil another night. Discard that water, boil a third night, then drink that water all at once. This was at the height of the mad cow disease hysteria, and even now I find I look askance at cow brains, even thoroughly boiled ones. I haven’t that much faith in the USDA. I’ve tried everything else including chiropractic (& we’ve seen elsewhere some of what I think of it), but on that one, yes, I remain a cowardly wimp.

I’m a pain sufferer. I don’t want it, sure as hell didn’t ask for it. I hate it. Hate, detest, loathe it. My two greatest  joys in life used to be reading and athletics –I love movement, competition, sweating, being strong, being fit. Don’t get to do any of that much any more; they ended in 2001 when I had thoracic surgery. I am not a vile, lazy malingerer. But I am a pain patient, and I am so insanely tired of being vilified and blocked at every turn because some people do naughty things with the drugs that can make my life tolerable. I am sick of people looking down at me –especially judgmental doctors who KNOW I’m nothing but a drug seeker because of the migraine plus opioid combo. Never mind the fact that one of the best neurologist/pain doctors in the country worked on me for decades and tried literally everything before finally admitting that opioids really were the best thing for me overall.  Then they decide he’s a loser, which really, really ticks me off; he’s a brilliant, patient, freaking saint who tried for years to help one of the most (unintentionally!) frustrating patients who ever lived. Those bozos won’t even attempt to try or think.

I digress again. There’s just so much to rant about, so little time.

My heart goes out to anyone who really understands what I’m talking about, because that means that you’re dealing with grinding misery and massive frustration and anger (and let’s not forget our ole pal depression!). To toss out one of the great understatements of all time, this sucks, don’t it?

(I seem to’ve wandered far afield from the article. It was a pretty decent article, all in all. It’s just the subjects of pain or opioids or the ever-lovin’ War On Drugs are so snarled & charged &  immediate, that it’s mighty tough for me to stay on a straight & narrow path.

*I’m well aware that statistically, women are the vast majority of chronic pain sufferers…which of course is because we all know that broads are weak, whiney, have no pain threshold, pill-poppers on the hoof. I is one, btw –a woman, that is, not the other stuff. I’m merely translating the blaring attitude of many of the people I’ve run across in my decades of cp (chronic pain; I’m tired of typing that term) –many of whom have been doctors.

**I am all too dreadfully aware that the instant anyone learns that not only has their been ‘addictive persoalities’ in my family, but my full sibling was a drug addict, I am forever labelled as another addict who is trying to rationalize her own criminality by pretending to have “legitimate” “needs” for pain medicine. If anything, TSOS is the better person for at least being honest about wanting to get high, right? I’m such a cowardly weasel that I use the underhanded ploy of “but I’m really hurting!” Riiiiiight.

***someday I’d like to get high, I think, just once. I’ve never gotten high from my pain relieving Evil Opioids, though I did feel pretty loopy when they gave me Versed for an endoscopy. Oh, and  twice I went to a Doc-In-A-Box in Texas with migraines so severe that I would’ve begged in the street for one of those Texas cowboy types to shoot me, if I coud’ve gotten to the street. At the clinic, I was given a nubain shot; it made me feel a little as if the inside of my skull had been filled with helium. Since before the shot, my skull had been filled with exploding atomic bombs, barbed wire, rabid mongooses, white-hot daggers, all being crushed from without by a giant vise, that helium felt pretty freaking good. I don’t know if that was high or ‘merely’ indescribable, incredible relief from intolerable pain.  Don’t really care, either.

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