Okay, I understand that we are all dead tired by now of hearing about kidney stones, but I just want to add a quick note before leaving the subject--hopefully forever. As of 10:10 am this morning I have not had to pass another stone, and I am hoping and praying that this is because there are no more stones to pass.
In the future we may try to avoid these by drinking lots of water, trying to eat a balanced diet, and avoiding things that are known to cause kidney stones--coffee, for instance, dehydration, too much vitamin D, and (at least in my now freaked out state of mind) Copaxone.
The bearing that MS has on stones, and stones on MS, is several fold. As mentioned, the injectable MS treatment, Copaxone, has been shown to cause stones in some people. This is at least partly due to the fact that Copaxone dehydrates, and dehydration causes kidney stones. The ingestion of too much vitamin D also causes kidney stones. We, as MS sufferers, are told to take vitamin D, since vitamin D deficiency is thought to be causative of MS. Well, vitamin D as it turns out also causes kidney stones, and so no more vitamin D for me. I would much rather stick with MS.
Any kind of stressful situation is bound to cause either a worsening in ones baseline MS symptoms, or even a new attack. Because of the physical stress on my body over the last week, my familiar MS symptoms have clearly worsened. My feet and legs, for instance, have returned to the severity of numbness that accompanied the initial attack over 2 years ago; i.e. I cannot really feel my feet at all and my legs feel rather like they were made from baseball bats rather than flesh, muscle and bone. In addition, a generally spaced out, congested, stuffy sort of sensation has returned to my brain, accompanied by confusion and a painful slowness of thought. Along with those good old hissing sounds I used to experience. Very hard to describe, and so I won't even try right now.
The goods news, though, is that this all seems to be an exacerbation rather than a relapse. And so I gradually return to my former state of ill-health with joy and thankfulness.
Visits
Saturday, August 29, 2009
Friday, August 28, 2009
A Stone By Any Other Name
Well here we are, come full circle to Thursday again, and I am still suffering the slings and arrows of these outrageous kidney stones. My ignorance of this particular malady was formerly complete--and I wish it had remained so.
It is often the case in life that people will work and strive and suffer and endure in hopes of producing something big, of such personal worthiness that the cost in effort, whether it be in sweat, in blood, in faith, or in fatigue, will ultimately pale at the bounty gained.
Kidney stones--to include my particular kidney stones and, I think, all other kidney stones in the world--fall woefully, ridiculously short when it comes to justifying the labor by which they have been produced. It seems to me that a man's pain--in a moral universe anyway--ought to be acknowledged in the form of some sort of tangible honorific. Which is to say that the kidney stone itself ought to at least try to have the common decency to appear worthy of the pain it has extracted.
A baby, after all--and I mean a baby of any kind, be it human or horse or dog or lamb--comes out pretty nicely, pretty impressively. Here it is at last, arms and legs, eyes and ears, hooves, snouts, tails--you name it. The product in short is sufficiently impressive to erase the bitterness by which it came.
But here, on the other hand, is your kidney stone, an object of mention hardly worth mentioning. Is it even a stone, or is this in itself too lofty a term for this mere grain, this mere speck which lies barely perceivable in the bottom of the toilet bowl? No, it is not a stone. A stone is something you find in a riverbed, or a driveway. A stone is something that can be picked up and thrown. It has weight, it has substance. This bit of sand is no stone at all, but a mere pretender to substance via the generosity of language.
And it ought to be ashamed of itself.
Saturday, August 22, 2009
What I Did for Summer Vacation
Thursday morning I woke up with the most God awful pain imaginable. Then it got worse. Having started in my stomach, the pain crawled around to my left flank and kind of posted permanent camp there. It was a pain that felt rather like a foot-long knife had been thrust into my back and then left there. It was throbbing, constant, unbearable, excruciating. Sweat began pouring out of my skin, dripping off my nose, running down my neck.
This, folks, is what it feels like to have a kidney stone. Not just any sort of stone, but a stone roughly the size of a cell phone, or a medium sized poodle. But I did not know this at the time. All I knew was that if there had been a nearby cliff to jump off of, I would have jumped.
My wife managed to get me into some clothes, and off we went to the ER. It was 10 o'clock in the morning by then, and the pain had started at about 8:00.
Two doses of IV morphine, followed by IV Dilaudid, had no effect whatsoever. This is the kind of pain that defeats the most stoic or stoics, forcing out groans and other tortured objections like the last bits of toothpaste from a twisted tube.
I was wheeled down the hallway to the CT scanner, then wheeled along to the x-ray suite.
"Okay, lie still now," the tech says.
Sure, no problem. Should I levitate while I'm at it?
Poodle sized stone having been confirmed, I was now wheeled back to the ER and given IV Toradol.
Hallelujah! At last, here was something to dent the pain. Just keep it running, wide open, that's all I could want. Life-threatening overdose seemed perfectly acceptable.
"Wow, that's one heck of a big stone," the ER doc says, admiring the CT images. "I don't think you'll be passing that on your own."
And so I was admitted, and transport was sent for.
Three hours later they arrived with a wheelchair. I, my wife, and our various baggage left for the fourth floor. Later in the evening, I was told, a urologist would remove the stone.
It was at about that time when women from the Indonesian community began to bring food to my wife. Rice, noodles, chicken, fish--you name it. I, of course, was not being allowed to eat, given the upcoming surgery. I wouldn't have wanted to in any case.
Once again we went through the patient identification process with yet another nurse. In a hospital there is no communication whatsoever between one department and another, between this floor and that. Over and over the patient undergoes interrogation.
By and by the urologist who would later be rescuing me from my own kidney stopped by the room. In order to outline for me what he would be doing, the doc drew a quick picture on the chalkboard. This picture was intended to depict the bladder, ureter, and prostate. To me it looked more like a child's rendition of Mickey Mouse's head and ears.
"So you have MS?" he said. "That's going to be a real problem down the road. Sometimes you'll be peeing like a baby, and then sometimes you won't be able to pee at all."
Why, I wondered, was he sharing this? I mean, just now? Why?
"A friend of mine just recently died of MS," he continued. "It's a terrible disease, isn't it."
I hardly knew what to say. Right now I was not worried about MS. I was thinking only of my kidney.
"Well, don't worry." He patted my arm. "When the time comes, we'll be there for you."
This was . . . comforting.
It was probably about 3 o'clock by now. My wife turned on the TV set, and someone brought her some more food. They set themselves up at the small table on wheels and imbibed.
The nurse on the unit sent for transport to the operative suite.
About four hours later, it arrived.
And at last came the perfect cure for the unbelievable pain of a kidney stone: Unconsciousness.
They put me under, and I don't know what happened for the next couple of hours--although I was able to pretty well guess that something, maybe a small hacksaw, had been shoved up my penis all the way to my left flank, and that a black string had been left hanging out, tied into a loop.
"Whatever you do, don't pull on that string," the good doctor warned.
And so it is Saturday now, and here I am at Starbucks, just hanging around with my string. They had left in a stent, you see, in order to keep the bladder outlet from closing, and this string will be part of me until Monday afternoon. The stent also, unfortunately, mimics the pain initially caused by the stone itself, but only when you urinate. Which you have to do every 10 minutes or so.
I can't help but remember the good old day--those days when my only worry was multiple sclerosis.
This, folks, is what it feels like to have a kidney stone. Not just any sort of stone, but a stone roughly the size of a cell phone, or a medium sized poodle. But I did not know this at the time. All I knew was that if there had been a nearby cliff to jump off of, I would have jumped.
My wife managed to get me into some clothes, and off we went to the ER. It was 10 o'clock in the morning by then, and the pain had started at about 8:00.
Two doses of IV morphine, followed by IV Dilaudid, had no effect whatsoever. This is the kind of pain that defeats the most stoic or stoics, forcing out groans and other tortured objections like the last bits of toothpaste from a twisted tube.
I was wheeled down the hallway to the CT scanner, then wheeled along to the x-ray suite.
"Okay, lie still now," the tech says.
Sure, no problem. Should I levitate while I'm at it?
Poodle sized stone having been confirmed, I was now wheeled back to the ER and given IV Toradol.
Hallelujah! At last, here was something to dent the pain. Just keep it running, wide open, that's all I could want. Life-threatening overdose seemed perfectly acceptable.
"Wow, that's one heck of a big stone," the ER doc says, admiring the CT images. "I don't think you'll be passing that on your own."
And so I was admitted, and transport was sent for.
Three hours later they arrived with a wheelchair. I, my wife, and our various baggage left for the fourth floor. Later in the evening, I was told, a urologist would remove the stone.
It was at about that time when women from the Indonesian community began to bring food to my wife. Rice, noodles, chicken, fish--you name it. I, of course, was not being allowed to eat, given the upcoming surgery. I wouldn't have wanted to in any case.
Once again we went through the patient identification process with yet another nurse. In a hospital there is no communication whatsoever between one department and another, between this floor and that. Over and over the patient undergoes interrogation.
By and by the urologist who would later be rescuing me from my own kidney stopped by the room. In order to outline for me what he would be doing, the doc drew a quick picture on the chalkboard. This picture was intended to depict the bladder, ureter, and prostate. To me it looked more like a child's rendition of Mickey Mouse's head and ears.
"So you have MS?" he said. "That's going to be a real problem down the road. Sometimes you'll be peeing like a baby, and then sometimes you won't be able to pee at all."
Why, I wondered, was he sharing this? I mean, just now? Why?
"A friend of mine just recently died of MS," he continued. "It's a terrible disease, isn't it."
I hardly knew what to say. Right now I was not worried about MS. I was thinking only of my kidney.
"Well, don't worry." He patted my arm. "When the time comes, we'll be there for you."
This was . . . comforting.
It was probably about 3 o'clock by now. My wife turned on the TV set, and someone brought her some more food. They set themselves up at the small table on wheels and imbibed.
The nurse on the unit sent for transport to the operative suite.
About four hours later, it arrived.
And at last came the perfect cure for the unbelievable pain of a kidney stone: Unconsciousness.
They put me under, and I don't know what happened for the next couple of hours--although I was able to pretty well guess that something, maybe a small hacksaw, had been shoved up my penis all the way to my left flank, and that a black string had been left hanging out, tied into a loop.
"Whatever you do, don't pull on that string," the good doctor warned.
And so it is Saturday now, and here I am at Starbucks, just hanging around with my string. They had left in a stent, you see, in order to keep the bladder outlet from closing, and this string will be part of me until Monday afternoon. The stent also, unfortunately, mimics the pain initially caused by the stone itself, but only when you urinate. Which you have to do every 10 minutes or so.
I can't help but remember the good old day--those days when my only worry was multiple sclerosis.
Wednesday, August 19, 2009
The Real Me
"Which one is you?"
"What do you mean which one? The one on the left of course."
My wife and I are looking at a series of black and white photographs from my childhood, received via e-mail through the kindness of my cousin in California. The subject in particular is three pictures from the summer of 1967, The Summer of Love. I am the smaller boy on the left, the one with the cap-like crop of platinum blond hair.
My wife is saying that the picture of me is not me. She points to my brother, who is standing by my cousin.
"That's you," she says.
"No, that's Gary. That one is David, standing by Gary. That other one, down there on the left, is me."
She is not convinced.
"That doesn't look anything like you," she says.
"Well people change," I argue. "People get older." Now I'm beginning to sound like Michael Jackson. One nose job, that's it. Maybe two.
At last she surrenders to first hand experience--i.e., to my superior knowledge of who is me and who is not me.
"You were a pretty weird looking kid," she concludes. "I'm glad you grew up."
And I have to admit that she has that part right.
Later that night, lying in bed, she offers one more observation.
"I love you so much," she says. "I mean the you in my head . . . not so much the real you."
I have no response to this. I am simply amazed. Amazed and befuddled. Bewitched, bothered, and bewildered.
"What do you mean which one? The one on the left of course."
My wife and I are looking at a series of black and white photographs from my childhood, received via e-mail through the kindness of my cousin in California. The subject in particular is three pictures from the summer of 1967, The Summer of Love. I am the smaller boy on the left, the one with the cap-like crop of platinum blond hair.
My wife is saying that the picture of me is not me. She points to my brother, who is standing by my cousin.
"That's you," she says.
"No, that's Gary. That one is David, standing by Gary. That other one, down there on the left, is me."
She is not convinced.
"That doesn't look anything like you," she says.
"Well people change," I argue. "People get older." Now I'm beginning to sound like Michael Jackson. One nose job, that's it. Maybe two.
At last she surrenders to first hand experience--i.e., to my superior knowledge of who is me and who is not me.
"You were a pretty weird looking kid," she concludes. "I'm glad you grew up."
And I have to admit that she has that part right.
Later that night, lying in bed, she offers one more observation.
"I love you so much," she says. "I mean the you in my head . . . not so much the real you."
I have no response to this. I am simply amazed. Amazed and befuddled. Bewitched, bothered, and bewildered.
Tuesday, August 18, 2009
Fixin' A Hole
I'm fixin' a hole where the rain gets in and keeps my mind from wandering.
Catchy words, those (courtesy of Paul McCartney). But of course I never knew how closely they would eventually apply.
Of course I'm thinking of the word wandering in this case according to its implication of a freedom to roam and range far and wide, and to do so in a smooth, well oiled manner, as opposed to the jerky, stop and start manner of the MS brain I've ended up with. Which, admittedly, may not have been what McCartney was thinking of.
My mind now achieves one thing at a time, usually through a series of errors and corrections, which often enough includes a certain ingredient of comedy. Thankfully. A prime example can be found in the daily routine of simply getting out the front door with everything I intend to take with me. The challenge is new every day, despite the fact that the routine itself is most often exactly the same as the day before.
The needful things include my car keys, my laptop, my cell phone, my cigarettes, my coffee cup, and of course my person. Oh, and my clothing, my shoes, and such-like. My brain cleaves to this task during the performance of the same like a dog about to be dropped into the bathtub. After anywhere from one to five or six return trips to the door, I finally reach the car and I'm on my way. Often enough having forgotten something despite my efforts.
Fixin' a hole where the rain gets in. Yes, my brain finds ways. The thought runs into a snag, teeters on the chasm where a bridge used to be, and then straightaway seeks an alternate route, the long and winding road, over hill and dale. It takes whatever way it can, and it gets where it's going, no matter how many times it has to restart the maze.
And it really doesn't matter if I'm wrong or right, it sings. Where I belong I'm right . . . where I belong.
Catchy words, those (courtesy of Paul McCartney). But of course I never knew how closely they would eventually apply.
Of course I'm thinking of the word wandering in this case according to its implication of a freedom to roam and range far and wide, and to do so in a smooth, well oiled manner, as opposed to the jerky, stop and start manner of the MS brain I've ended up with. Which, admittedly, may not have been what McCartney was thinking of.
My mind now achieves one thing at a time, usually through a series of errors and corrections, which often enough includes a certain ingredient of comedy. Thankfully. A prime example can be found in the daily routine of simply getting out the front door with everything I intend to take with me. The challenge is new every day, despite the fact that the routine itself is most often exactly the same as the day before.
The needful things include my car keys, my laptop, my cell phone, my cigarettes, my coffee cup, and of course my person. Oh, and my clothing, my shoes, and such-like. My brain cleaves to this task during the performance of the same like a dog about to be dropped into the bathtub. After anywhere from one to five or six return trips to the door, I finally reach the car and I'm on my way. Often enough having forgotten something despite my efforts.
Fixin' a hole where the rain gets in. Yes, my brain finds ways. The thought runs into a snag, teeters on the chasm where a bridge used to be, and then straightaway seeks an alternate route, the long and winding road, over hill and dale. It takes whatever way it can, and it gets where it's going, no matter how many times it has to restart the maze.
And it really doesn't matter if I'm wrong or right, it sings. Where I belong I'm right . . . where I belong.
Sunday, August 16, 2009
Blog Labels
Funny how these little labels work--you know, the ones you type into the little box at the bottom of your blog entry? In the past I've not paid much attention to it, but just sort of typed something in as a matter of course, or of obedience. I have learned over time, however, that these things are important. The words you type go into the big bingo basket of the search engines and serve as pertinent flags for people who are searching for material related to this thing or that thing. BINGO!
This is how an older, basically Internet ignorant man discovers modern times. A light goes on (though sputtering and flickering because of the underlying MS), and he discovers what most people have known from the outset.
What is funnier, however, are the key words or phrases that are found most often to have conveyed the surfer to ones site.
The most popular among my labels has been Mean spirited women. Who would have thunk it? How is it that these three words should have ended up on the tips of so many tongues (or fingertips, as it were)? I had no idea when I typed them in of tapping into any sort of widely shared concept, and yet here are all these hits coming from these three simple words.
One can only presume that a shared experience lurks in the communal consciousness regarding the nature of women.
Sadly, those who land at Jim Dandy via this promising phase must be disappointed; for, as far as I can remember (without actually taking the trouble to look back at the post, having never had any patience for reading my own crap), I wrote the entry because I was angry at my wife, and nonplussed by how some people can so easily bounce back and forth between attitudes that seem diametrically opposed--from the angelic to the demonic, and then back again.
In that particular post, I may well have left out the angelic part. But really, folks, she's a sweetheart. Sometimes.
I wonder whether I would get as many visits from the phrase Kind spirited women. I guess I ought to try it someday. I am thinking from the outset, however, that something so commonly acknowledged would attract little interest.
This is how an older, basically Internet ignorant man discovers modern times. A light goes on (though sputtering and flickering because of the underlying MS), and he discovers what most people have known from the outset.
What is funnier, however, are the key words or phrases that are found most often to have conveyed the surfer to ones site.
The most popular among my labels has been Mean spirited women. Who would have thunk it? How is it that these three words should have ended up on the tips of so many tongues (or fingertips, as it were)? I had no idea when I typed them in of tapping into any sort of widely shared concept, and yet here are all these hits coming from these three simple words.
One can only presume that a shared experience lurks in the communal consciousness regarding the nature of women.
Sadly, those who land at Jim Dandy via this promising phase must be disappointed; for, as far as I can remember (without actually taking the trouble to look back at the post, having never had any patience for reading my own crap), I wrote the entry because I was angry at my wife, and nonplussed by how some people can so easily bounce back and forth between attitudes that seem diametrically opposed--from the angelic to the demonic, and then back again.
In that particular post, I may well have left out the angelic part. But really, folks, she's a sweetheart. Sometimes.
I wonder whether I would get as many visits from the phrase Kind spirited women. I guess I ought to try it someday. I am thinking from the outset, however, that something so commonly acknowledged would attract little interest.
Friday, August 14, 2009
My Left Foot
My left foot has begun to drag. I guess that's what they call "foot drop." This seems, unlike many other medical terms, perfectly descriptive. Nonetheless, I am more inclined to call it obstinate. The same way my father used to call me obstinate. I have to keep looking behind me to see if the foot is still coming along. Yo, get with the program, I will say, and yet the foot persists in its recalcitrant ways, and finally begins to pout. I'm thinking of sending it to military school. Either that or church camp.
In the meantime, my neurologist has left his practice for a teaching position at UCLA. Maybe he could take my foot along with him? If not, it will just have to wait for a new neurologist sometime in the dim future (the clinic is looking for one--no doubt under rocks and in other nooks and crannies, as this, I think, is where they are most often to be found).
Also my back is aching like a SOB. This, however, is not due to MS. It is due to the fact that my chair is too low and my desk is too high. It is an ergonomic problem, and I cannot really figure out what to. I am thinking of either raising the floor or lowering the ceiling. Or sitting on a phone book. Or sawing off the legs of the desk. There are a number of options, all of which are presently under consideration.
Concomitantly, I am trying to beat the standard line count, which is how we transcriptionists earn incentive pay (which the IRS in turn takes in taxes). My foot has no objection to this pursuit, but my back does not care for the idea at all. My back, as it were, is stabbing me in the back, and has become, therefore, as obstinate as my foot.
The rebellion of the body, part by part. Ain't that what MS is all about?
In the meantime, my neurologist has left his practice for a teaching position at UCLA. Maybe he could take my foot along with him? If not, it will just have to wait for a new neurologist sometime in the dim future (the clinic is looking for one--no doubt under rocks and in other nooks and crannies, as this, I think, is where they are most often to be found).
Also my back is aching like a SOB. This, however, is not due to MS. It is due to the fact that my chair is too low and my desk is too high. It is an ergonomic problem, and I cannot really figure out what to. I am thinking of either raising the floor or lowering the ceiling. Or sitting on a phone book. Or sawing off the legs of the desk. There are a number of options, all of which are presently under consideration.
Concomitantly, I am trying to beat the standard line count, which is how we transcriptionists earn incentive pay (which the IRS in turn takes in taxes). My foot has no objection to this pursuit, but my back does not care for the idea at all. My back, as it were, is stabbing me in the back, and has become, therefore, as obstinate as my foot.
The rebellion of the body, part by part. Ain't that what MS is all about?
Wednesday, August 12, 2009
Wrong-Headed Planet
Now this may seen pretty stupid--which is probably because it is pretty stupid--but honestly one of my main reasons for staying on Copaxone (rather than switching to nothing) is the high cost of the medicine. This, you see, pays off the patient responsibility portion of my health plan, thus providing me with FREE prescriptions for the rest of the year--baclofen, gabapentin, ropinorile, lexapro, protonix, lortab, and last but certainly not least NuVigil, ringing in at $500 for 30 tiny pills!
I guess I'm just a terrible cheapskate, but there you have it. I just do not believe I could face paying $500 for 30 tiny pills. Just imagine how many packs of cigarettes I could get for the same price.
In addition, the fact that the prescriptions are FREE allows me to choke them down as quickly as allowed, and then go get another bagful of bottles without giving it a second thought, just as if I were picking apples off of someone else's tree.
This is called getting your money's worth. Isn't that how insurance makes us feel these days? Here we are suffering the constant burglary of our pocketbooks, and so of course if the chance arises to obtain an actual fair benefit from the exorbitant prices we pay, we jump on it, right? (This is meant to be a rhetorical question).
How often have you all experienced a disconnect between what your insurance calls full coverage and the bill that nonetheless shows up in your mail box? This involves a sort of math that is far beyond my figuring (though I will be the first to admit that I never was no good at math anyways).
But what I think is this--what I think is that the medical institutions, accounting for what the insurance will pay, simply raise their prices in response. It's something somehow akin to the way a car dealership works (think of the salesman in the movie Fargo).
This may seem unrelated (likely because it is), but did anyone read about that Russian cargo ship that mysteriously disappeared in the North Atlantic? It was there, and then gone, and no one has the foggiest idea what might have happened to it. This is a cargo ship, mind you, not a needle in a haystack. Would this make a good story line for a movie, or what? Oh, I'm sure there's a reasonable explanation, we just cannot see it for all the water and space in between.
Oh, and then there is the new found planet that orbits backwards. Yes. It's called WASP-17, and is about 1000 lights years away, give or take. The planet, as it seems, has it all wrong. It is a stubborn, senseless, backward planet.
That's one way to look at it. But how about this--how about maybe that one planet has it right, and all the rest of the known universe is whirling in the wrong direction? Who knows. What is common, after all, is not necessarily the same as what is proper.
I guess I'm just a terrible cheapskate, but there you have it. I just do not believe I could face paying $500 for 30 tiny pills. Just imagine how many packs of cigarettes I could get for the same price.
In addition, the fact that the prescriptions are FREE allows me to choke them down as quickly as allowed, and then go get another bagful of bottles without giving it a second thought, just as if I were picking apples off of someone else's tree.
This is called getting your money's worth. Isn't that how insurance makes us feel these days? Here we are suffering the constant burglary of our pocketbooks, and so of course if the chance arises to obtain an actual fair benefit from the exorbitant prices we pay, we jump on it, right? (This is meant to be a rhetorical question).
How often have you all experienced a disconnect between what your insurance calls full coverage and the bill that nonetheless shows up in your mail box? This involves a sort of math that is far beyond my figuring (though I will be the first to admit that I never was no good at math anyways).
But what I think is this--what I think is that the medical institutions, accounting for what the insurance will pay, simply raise their prices in response. It's something somehow akin to the way a car dealership works (think of the salesman in the movie Fargo).
This may seem unrelated (likely because it is), but did anyone read about that Russian cargo ship that mysteriously disappeared in the North Atlantic? It was there, and then gone, and no one has the foggiest idea what might have happened to it. This is a cargo ship, mind you, not a needle in a haystack. Would this make a good story line for a movie, or what? Oh, I'm sure there's a reasonable explanation, we just cannot see it for all the water and space in between.
Oh, and then there is the new found planet that orbits backwards. Yes. It's called WASP-17, and is about 1000 lights years away, give or take. The planet, as it seems, has it all wrong. It is a stubborn, senseless, backward planet.
That's one way to look at it. But how about this--how about maybe that one planet has it right, and all the rest of the known universe is whirling in the wrong direction? Who knows. What is common, after all, is not necessarily the same as what is proper.
Tuesday, August 11, 2009
The Fingolimod Miracle
New treatments for multiple sclerosis (otherwise known as new hopes) seem to be emerging from the forest of research like deer and badgers before a wind driven late summer blaze.
We read now (in Multiple Sclerosis Central) of Fingolimod offering the greatest hope (don't they all?), in that it reduces the risk of relapse by 50 percent--a mind boggling 20% gain over Copaxone and the interferons.
The miracles just keep marching on.
Is there a catch? Well sure, but nothing in life is 100% safe, right? Would you rather do nothing at all? How stupid are you willing to be?
Well okay, here's the thing, if you must know. First off, the product causes lymphopenia. What's that? Decreased lymphocytes. What's a lymphocyte? Well, who cares. Who needs 'em, right? They can probably be replaced by the consumption of broccoli or something.
Oh, also fingolimod causes bradycardia, at least with the first dose. Not might, but does. So spend the night in the hospital. Big deal.
Thirdly, the product can affect the electrical impulses within the heart. This is a chronic condition known as Wenchebach's atrioventricular block syndrome.
Hmm. That actually sounds kind of serious.
Still and all, it reduces the chance of MS relapse by 50%, making it the best available treatment for MS. Ain't nothing in life that comes without risk.
One more thing though. Patients using Fingolimod are more likely to experience serious opportunistic infections. And, uh . . . Fingolimod may predispose the user to various malignancies.
Malignancies? Gosh I hate that word. The M word.
But hold on a sec. MS itself does not cause malignancies of any type, and so . . . um . . . why again should I hop on the Fingolimod wagon?
We read now (in Multiple Sclerosis Central) of Fingolimod offering the greatest hope (don't they all?), in that it reduces the risk of relapse by 50 percent--a mind boggling 20% gain over Copaxone and the interferons.
The miracles just keep marching on.
Is there a catch? Well sure, but nothing in life is 100% safe, right? Would you rather do nothing at all? How stupid are you willing to be?
Well okay, here's the thing, if you must know. First off, the product causes lymphopenia. What's that? Decreased lymphocytes. What's a lymphocyte? Well, who cares. Who needs 'em, right? They can probably be replaced by the consumption of broccoli or something.
Oh, also fingolimod causes bradycardia, at least with the first dose. Not might, but does. So spend the night in the hospital. Big deal.
Thirdly, the product can affect the electrical impulses within the heart. This is a chronic condition known as Wenchebach's atrioventricular block syndrome.
Hmm. That actually sounds kind of serious.
Still and all, it reduces the chance of MS relapse by 50%, making it the best available treatment for MS. Ain't nothing in life that comes without risk.
One more thing though. Patients using Fingolimod are more likely to experience serious opportunistic infections. And, uh . . . Fingolimod may predispose the user to various malignancies.
Malignancies? Gosh I hate that word. The M word.
But hold on a sec. MS itself does not cause malignancies of any type, and so . . . um . . . why again should I hop on the Fingolimod wagon?
Monday, August 10, 2009
Pendulum
If the pendulum swings this way, it must also swing the other. What goes up must come down. I guess our minds are no more than Newtonian processes after all.
Here I am one day rebelling against the current wisdom of medical treatment, and then the next day swinging back again because of the witness of a friend as to the crippling price MS can exact on the body.
Why fortify the castle in time of peace? Who prepares for war when the enemy sleeps in a distant land?
The wise? The prudent? The obedient?
Does the effort at prevention merely admit to the ultimate attack? And if I say that prevention is wise, and call myself a fool for not making a simple investment in the same, then why do I continue to smoke? Am I a product of statistics? Are statistics greater than God? Can I pick and choose which statistics will ultimately apply?
No matter how I seek to protect my life, will it not be eventually taken anyway according to what is either transcendent will or meaningless whim?
Lots of questions, and a poverty in answers. That's life, ain't it?
Here I am one day rebelling against the current wisdom of medical treatment, and then the next day swinging back again because of the witness of a friend as to the crippling price MS can exact on the body.
Why fortify the castle in time of peace? Who prepares for war when the enemy sleeps in a distant land?
The wise? The prudent? The obedient?
Does the effort at prevention merely admit to the ultimate attack? And if I say that prevention is wise, and call myself a fool for not making a simple investment in the same, then why do I continue to smoke? Am I a product of statistics? Are statistics greater than God? Can I pick and choose which statistics will ultimately apply?
No matter how I seek to protect my life, will it not be eventually taken anyway according to what is either transcendent will or meaningless whim?
Lots of questions, and a poverty in answers. That's life, ain't it?
Saturday, August 8, 2009
Playing the Odds
We find, in the latest issue of MS Focus, that the upcoming oral drug, Cladrabine, has proven very effective in treating MS. However, it is also found that some people using the drug have developed significantly increased risk of serious infection and cancer.
All righty then. Lemme see now . . . uh yeah, I hereby withdraw my enthusiasm.
The funny thing is that this little caveat should be conveyed in such neutral seeming tone (like Oh by the way, perhaps we should mention). Research, as it seems to me, becomes enamored at itself, overly impressed with its achievements, under appreciative of the odds that the same could kill.
If you have MS, and if you go to a neurologist, chances are pretty much 100 percent that you will be put on the latest regimen of injections--despite the fact that the same will make you sick, or cause otherwise unnatural sorts of reactions--and if you are obstinate enough to refuse, you will be made to feel stupid, and careless, and maybe even fired from the particular clinic. Why? Because you have insulted the latest wisdom of medicine, and you have failed to appreciate the cutting edge reputation of your clinic.
Doctors are convincing as hell, and a person who is fearful, who is suffering, seeks to place his faith in the nearest hope.
We see the same thing with chemotherapy every day. That is the treatment. You got cancer, now you got to have the treatment. Period. That's how it is done.
Yes.
As far as I know, it killed by brother, my father, and my mother, and more quickly so than the cancer itself would have done.
I started out on Avonex. It was the best, I was told. At first you might suffer some side effects--flu-like symptoms, aches, chills, fevers--but these would likely fade and then for the most part disappear within a month or two.
For more than a year I patiently endured being sick as a dog every Thursday and Friday. I alternately shivered and burned, I endured aches in my legs that felt like broken bones, I walked around in a fog thicker than any that MS on its own had previously caused.
For you see, I wanted to do the right thing. I had a responsibility to myself and to my family. To shun the benefit of being 30 percent less likely to have a new attack of MS would be tantamount to sheer carelessness. Would it not?
And so that's how it works, folks. Now I am on Copaxone, which does not cause flu-like illness. It only causes burning or itching of the skin, bruises and weird raised welts, and sometimes, if you hit a bad spot with the needle, a feeling like you have shot yourself there with a small caliber pistol. So much better.
Or is it?
One often reads, in researching Copaxone, that exactly why it works is not exactly known. Interesting. Exactly what else, I wonder, is not exactly known about it?
And what are these persistent, itchy lumps that sometimes develop beneath injection sites? I put the question once to a Copaxone Rep over the phone. Well . . . you guessed it. It is not exactly known.
It is said that prayer has been shown in blind trials to produce curative results in test group being prayed for. It is not exactly known why.
What I'm wondering now is whether the percentage here is comparable to that gained in the medicinal results. Thirty percent, after all, is not all that much to shout about.
All righty then. Lemme see now . . . uh yeah, I hereby withdraw my enthusiasm.
The funny thing is that this little caveat should be conveyed in such neutral seeming tone (like Oh by the way, perhaps we should mention). Research, as it seems to me, becomes enamored at itself, overly impressed with its achievements, under appreciative of the odds that the same could kill.
If you have MS, and if you go to a neurologist, chances are pretty much 100 percent that you will be put on the latest regimen of injections--despite the fact that the same will make you sick, or cause otherwise unnatural sorts of reactions--and if you are obstinate enough to refuse, you will be made to feel stupid, and careless, and maybe even fired from the particular clinic. Why? Because you have insulted the latest wisdom of medicine, and you have failed to appreciate the cutting edge reputation of your clinic.
Doctors are convincing as hell, and a person who is fearful, who is suffering, seeks to place his faith in the nearest hope.
We see the same thing with chemotherapy every day. That is the treatment. You got cancer, now you got to have the treatment. Period. That's how it is done.
Yes.
As far as I know, it killed by brother, my father, and my mother, and more quickly so than the cancer itself would have done.
I started out on Avonex. It was the best, I was told. At first you might suffer some side effects--flu-like symptoms, aches, chills, fevers--but these would likely fade and then for the most part disappear within a month or two.
For more than a year I patiently endured being sick as a dog every Thursday and Friday. I alternately shivered and burned, I endured aches in my legs that felt like broken bones, I walked around in a fog thicker than any that MS on its own had previously caused.
For you see, I wanted to do the right thing. I had a responsibility to myself and to my family. To shun the benefit of being 30 percent less likely to have a new attack of MS would be tantamount to sheer carelessness. Would it not?
And so that's how it works, folks. Now I am on Copaxone, which does not cause flu-like illness. It only causes burning or itching of the skin, bruises and weird raised welts, and sometimes, if you hit a bad spot with the needle, a feeling like you have shot yourself there with a small caliber pistol. So much better.
Or is it?
One often reads, in researching Copaxone, that exactly why it works is not exactly known. Interesting. Exactly what else, I wonder, is not exactly known about it?
And what are these persistent, itchy lumps that sometimes develop beneath injection sites? I put the question once to a Copaxone Rep over the phone. Well . . . you guessed it. It is not exactly known.
It is said that prayer has been shown in blind trials to produce curative results in test group being prayed for. It is not exactly known why.
What I'm wondering now is whether the percentage here is comparable to that gained in the medicinal results. Thirty percent, after all, is not all that much to shout about.
Thursday, August 6, 2009
A Fondness for Carl G. Jung
At University, a long time ago, in a galaxy far, far away, I had an American Literature teacher named Michael Hollister who came to exert a strong influence upon my worldview as a young man, not to mention my subsequent understanding of literature--its purpose, its meaning, its message. Professor Hollister took literature out of the self contained realm of mere story and into the transcendent, revealing the heart within the body, so to speak, parting the veil.
As a foundation for his teaching, an ultimate point of reference, he used the psychology of Carl G. Jung, the study of the unconscious mind, the archetype and the symbol, the idea that there exists a collective unconscious that can be tapped into in order to provide meaning through the understanding of imagery as old as mankind itself.
We read Jungian psychology right alongside American Literature, applying the one to the other, and then both toward a higher comprehension of life itself. I was so amazed, as a young man, that I had been apparently missing the meaning of most everything. I became a disciple. I read a lot of Jung and Jungians. I became, in my own small way, a Jungian.
In Jungian psychology dreams are of great importance. One makes a heroic effort at interpreting his dreams according to the symbology supposedly employed by the unconscious mind. What makes no sense at all ends up making all the sense in the world. Ostensibly.
I remember tying a string to a spiral notebook and hanging the notebook from my bedpost. In this way, as I imagined it, I could, upon awakening from a dream, quickly sketch down the details (using the pen conveniently tied to the notebook), and then in the morning be able to interpret the thing in a conscious manner, thereby unlocking precious secrets and taking one more step on the road to personal individuation.
I suppose that the trouble with this should have been predictable enough--because of course there is a difference between writing something down when one has some light and is actually awake, and writing something down in the dark upon a page he can barely see, bumbling about between one snore and the next. What I mean, in short, is that the potential profundities of my dreams remained pretty much perfectly obscure, the squiggles and chicken scratches upon the page being quite indecipherable in the morning.
In addition to this particular shortcoming was the fact that my own personal dream life seemed stubbornly immune to Jungian psychology. I had read about transcendently meaningful dreams of mythical beings and ancient fable, the fully explicable presence of beasts and reptiles, kings and queens, the sun and the moon, and yet proceeded myself to dream of a childlike polar bear who wanted to play hide and seek, a dog which turned into a duck, and other similarly ridiculous happenings, rather distant from the level of transcendence I had hoped to discover.
Ah, but Jung is harsh and uncompromising. One must face the message of ones soul, despising pride and ego. In the end I found no other honest answer, according to my research and efforts, than the revelation that I myself am a ridiculous person. A childish bear. A duck-like curr.
Still fond of Jung, I yet moved on, deciding it might be better (for my self-esteem anyway) to forge myths of my own. So it was that I entered my Jack London phase. Which is something about which I might someday say more.
As a foundation for his teaching, an ultimate point of reference, he used the psychology of Carl G. Jung, the study of the unconscious mind, the archetype and the symbol, the idea that there exists a collective unconscious that can be tapped into in order to provide meaning through the understanding of imagery as old as mankind itself.
We read Jungian psychology right alongside American Literature, applying the one to the other, and then both toward a higher comprehension of life itself. I was so amazed, as a young man, that I had been apparently missing the meaning of most everything. I became a disciple. I read a lot of Jung and Jungians. I became, in my own small way, a Jungian.
In Jungian psychology dreams are of great importance. One makes a heroic effort at interpreting his dreams according to the symbology supposedly employed by the unconscious mind. What makes no sense at all ends up making all the sense in the world. Ostensibly.
I remember tying a string to a spiral notebook and hanging the notebook from my bedpost. In this way, as I imagined it, I could, upon awakening from a dream, quickly sketch down the details (using the pen conveniently tied to the notebook), and then in the morning be able to interpret the thing in a conscious manner, thereby unlocking precious secrets and taking one more step on the road to personal individuation.
I suppose that the trouble with this should have been predictable enough--because of course there is a difference between writing something down when one has some light and is actually awake, and writing something down in the dark upon a page he can barely see, bumbling about between one snore and the next. What I mean, in short, is that the potential profundities of my dreams remained pretty much perfectly obscure, the squiggles and chicken scratches upon the page being quite indecipherable in the morning.
In addition to this particular shortcoming was the fact that my own personal dream life seemed stubbornly immune to Jungian psychology. I had read about transcendently meaningful dreams of mythical beings and ancient fable, the fully explicable presence of beasts and reptiles, kings and queens, the sun and the moon, and yet proceeded myself to dream of a childlike polar bear who wanted to play hide and seek, a dog which turned into a duck, and other similarly ridiculous happenings, rather distant from the level of transcendence I had hoped to discover.
Ah, but Jung is harsh and uncompromising. One must face the message of ones soul, despising pride and ego. In the end I found no other honest answer, according to my research and efforts, than the revelation that I myself am a ridiculous person. A childish bear. A duck-like curr.
Still fond of Jung, I yet moved on, deciding it might be better (for my self-esteem anyway) to forge myths of my own. So it was that I entered my Jack London phase. Which is something about which I might someday say more.
Monday, August 3, 2009
Hate
To answer the hateful word in like kind is easy, almost automatic. These are the things we struggle against--the knee jerk responses of the old Adam, the twitches to life of the unburied dead. Like a zombie, the old man grotesquely persists, tied to ones back, a heavy burden indeed.
We are tested beyond endurance, eternally exposed to the storm. We fall once, twice, three times--battered by the cross which we lug inch by inch to Golgotha. It is not light, but heavy, heavy, and the end of all is crucifixion. This is the death the new man insists upon--not the death which avenges, not the death that takes as many enemies as possible with it, not a death with honor and pride, but the death by love, naked and pierced, alone and forsaken, harmless to the end.
This is the shame of compassion, this is the burden of love incorruptible., the victory of refusal.
Hate is immune to itself. Hate is sustained by itself. It consumes the stone, the bitter word, the dagger and the sword, the rot of anger. It grazes on the thistles of unforgiveness, and chews the cud that hardens the heart. Hate eats the marriage, eats the promise, crushes and swallows the sacred vow. It calls itself courageous, and then moves on, a swarm of locusts, a plague of flies.
These are the worms that turn and burrow in the sockets of eyes that would not see. These are the mites that taint the fruit, the maggots that ruin the meat. This is the mold which gobbles the bread and starves the innocent child.
The termite eats from the bottom up, and so the foundation crumbles first. The job is done, though the house still stands. What life remains yet walks on air, all the way down to the finished pit.
What cure exists now for the cancerous heart, what blood for the dried up vein?
We are tested beyond endurance, eternally exposed to the storm. We fall once, twice, three times--battered by the cross which we lug inch by inch to Golgotha. It is not light, but heavy, heavy, and the end of all is crucifixion. This is the death the new man insists upon--not the death which avenges, not the death that takes as many enemies as possible with it, not a death with honor and pride, but the death by love, naked and pierced, alone and forsaken, harmless to the end.
This is the shame of compassion, this is the burden of love incorruptible., the victory of refusal.
Hate is immune to itself. Hate is sustained by itself. It consumes the stone, the bitter word, the dagger and the sword, the rot of anger. It grazes on the thistles of unforgiveness, and chews the cud that hardens the heart. Hate eats the marriage, eats the promise, crushes and swallows the sacred vow. It calls itself courageous, and then moves on, a swarm of locusts, a plague of flies.
These are the worms that turn and burrow in the sockets of eyes that would not see. These are the mites that taint the fruit, the maggots that ruin the meat. This is the mold which gobbles the bread and starves the innocent child.
The termite eats from the bottom up, and so the foundation crumbles first. The job is done, though the house still stands. What life remains yet walks on air, all the way down to the finished pit.
What cure exists now for the cancerous heart, what blood for the dried up vein?
Rapids
Finally got out of the furnace otherwise known as Portland yesterday, although as it happened we ended up finding an even hotter spot, some few miles East of Hood River. We had joined a group of picnickers/campers from one of the seemingly countless Indonesian churches here. One man among their group said the temperature was 112 degrees. Now I don't know about the absolute veracity of that--as I do not know that it has ever been 112 in Oregon before--but I do believe it was damn close anyway.
About a block's walk from the campsite is a river--maybe Hood River, who knows?--and therein I alternately sat and floated. How the other folks managed to stay up at the campsite talking and eating, I cannot fathom. Had I done likewise I would have been by today something resembling a hunk of charcoal, or maybe a banana skin dried to the consistency of leather.
Ah, but that cool, cool river was heaven. To tell the truth, it was cold. Like really cold. The sort of cold that is bearable only once your feet and legs go numb. Of course I'm one step ahead to begin with, since my feet are always numb anyway--which, obviously, is yet another blessing bestowed by MS. The good news never ends, in its own way.
Now the spot I had found on the river had white water above and white water below, and between the two sets of rapids a deep trough where the water ran swift and green. I could not help but hear the call of the boy still in me. What an opportunity! Why, I could wade out to the first set of rapids, lower myself into the water, and have the ride of my life all the way to the white water below!
Now hold on there, the older (much older), creakier, not to mention disabled adult objected. What happens if you can't stand up again? What happens if you bounce between the boulders and on down the river to God knows where? What happens if you break your knees, or your skull, or your feet, which you cannot feel. What's this sudden need to be stupid?
Ah, but the boy scoffed at such needless caution, and chided the man for cowardice, for being both a chicken and a bore. Sit here and fry if you want, he said, but I'm doin this thing!
No matter how limited by the old man's legs, the unwilling spasms and imbalance of MS, the boy forged forward into the rushing stream--he had done it, after all, a thousand times in the past--he had done this, and more. Yes, this in itself was mere child's play.
As it happened, the old man fell down in midstream--but no matter. What better way to immerse the whole body in the chilling water? Down they went, and then away, carried by the power of nature.
And God was it fun! So fun, in fact, that the boy and the man returned to the river three times that day, and shot down the rapids ten!
About a block's walk from the campsite is a river--maybe Hood River, who knows?--and therein I alternately sat and floated. How the other folks managed to stay up at the campsite talking and eating, I cannot fathom. Had I done likewise I would have been by today something resembling a hunk of charcoal, or maybe a banana skin dried to the consistency of leather.
Ah, but that cool, cool river was heaven. To tell the truth, it was cold. Like really cold. The sort of cold that is bearable only once your feet and legs go numb. Of course I'm one step ahead to begin with, since my feet are always numb anyway--which, obviously, is yet another blessing bestowed by MS. The good news never ends, in its own way.
Now the spot I had found on the river had white water above and white water below, and between the two sets of rapids a deep trough where the water ran swift and green. I could not help but hear the call of the boy still in me. What an opportunity! Why, I could wade out to the first set of rapids, lower myself into the water, and have the ride of my life all the way to the white water below!
Now hold on there, the older (much older), creakier, not to mention disabled adult objected. What happens if you can't stand up again? What happens if you bounce between the boulders and on down the river to God knows where? What happens if you break your knees, or your skull, or your feet, which you cannot feel. What's this sudden need to be stupid?
Ah, but the boy scoffed at such needless caution, and chided the man for cowardice, for being both a chicken and a bore. Sit here and fry if you want, he said, but I'm doin this thing!
No matter how limited by the old man's legs, the unwilling spasms and imbalance of MS, the boy forged forward into the rushing stream--he had done it, after all, a thousand times in the past--he had done this, and more. Yes, this in itself was mere child's play.
As it happened, the old man fell down in midstream--but no matter. What better way to immerse the whole body in the chilling water? Down they went, and then away, carried by the power of nature.
And God was it fun! So fun, in fact, that the boy and the man returned to the river three times that day, and shot down the rapids ten!
Saturday, August 1, 2009
Old Friends
Today I met with an old, old friend.
He was my best friend when I was 7, and 8, and 9. After the fourth grade we did not see each other again until this day. I did not know whether I would even recognize him--but I did, and instantly so. I wondered whether we would find anything to say to one another. We did--much, in fact. I do not remember much about the past (thanks to brain damage). He remembers a good deal of it, and shared what he remembered, and then I remembered too.
Still, we did not talk very much about the past. We talked about what we had done ever since, about what we are doing now. We talked about our children, our families, our wives--just as if we had been friends all along.
I remember now why I had loved him so. Oddly enough, I think maybe he's still my best friend.
All this reminds me of a line from the movie (and the Stephen King story) Stand By Me. Richard Dreyfus plays an older man with children of his own, looking back on an incident of his childhood, remembering his old companions, their adventures, and their closeness. In the present time he is writing a story about it.
And in the end, finishing his manuscript, he writes something like this:
I've never had friends like that since . . .
He sits back for a moment then, thinking, watching his kids and their friends from the window. And then returns to his laptop for one more line.
Jesus, who has?
He was my best friend when I was 7, and 8, and 9. After the fourth grade we did not see each other again until this day. I did not know whether I would even recognize him--but I did, and instantly so. I wondered whether we would find anything to say to one another. We did--much, in fact. I do not remember much about the past (thanks to brain damage). He remembers a good deal of it, and shared what he remembered, and then I remembered too.
Still, we did not talk very much about the past. We talked about what we had done ever since, about what we are doing now. We talked about our children, our families, our wives--just as if we had been friends all along.
I remember now why I had loved him so. Oddly enough, I think maybe he's still my best friend.
All this reminds me of a line from the movie (and the Stephen King story) Stand By Me. Richard Dreyfus plays an older man with children of his own, looking back on an incident of his childhood, remembering his old companions, their adventures, and their closeness. In the present time he is writing a story about it.
And in the end, finishing his manuscript, he writes something like this:
I've never had friends like that since . . .
He sits back for a moment then, thinking, watching his kids and their friends from the window. And then returns to his laptop for one more line.
Jesus, who has?
Subscribe to:
Posts (Atom)