Strange experience of late with Ambien. See, I have this deal going on where my body wants to twitch and jump around in bed all night. No partner, mind you--just me and my body. It is rather like restless leg syndrome, but of course it's not, it's multiple sclerosis, and therefore the drug commonly prescribed for RLS, Requip, does not work. For this reason my PCP prescribed Ambien.
Now here's the weird part: One or two Ambien tablets will knock me out within perhaps ten minutes; however it proves to be a sure thing that I will then wake up at about 3 o'clock in the morning and find myself completely unable to go back to sleep. Absolutely wide awake, only tired and exhausted. Can you imagine it?
So it is that I've been knocking about since 3 a.m. I find that there is not a whole lot to do at 3 a.m. Ones friend are of course asleep, as is ones wife, even ones dogs--although I will give credit to Smokey for staggering out to the dining room briefly just to see what the hell was going on.
No one I know is online at 3 a.m. (although someone named Sexy Mandy wants to chat on Yahoo).
Finally 6 o'clock rolls around and I head for Starbucks to have the first of what will likely be two dozen cappuccinos. Now everything about Starbucks is wonderful as far as I'm concerned, except for the music. Why must they have loud music playing, generally music with a jittery, Latino sort of beat. Do I need this? What is the purpose? Am I to be happy because of this upbeat music? Is this any way to wake up? For God's sake, I'm already on edge here folks!
Sooo . . . I think a doughnut would do nicely just now. Along with another coffee.
Life is a funny sort of business. It's also the only business out there. Every cloud has a silver lining. And every silver lining has a cloud.
Visits
Showing posts with label ms symptoms. Show all posts
Showing posts with label ms symptoms. Show all posts
Wednesday, January 27, 2010
Tuesday, November 24, 2009
The Brain Buzz
One of the most unpleasant of the myriad unpleasantries associated with multiple sclerosis, for me anyway, is what I will call the brain buzz, if only for the sake of alliteration, and at the expense moreover of descriptive accuracy--for you see the phenomenon experienced is really more of a hiss than a buzz, though yet again not so much of a hiss as a hiccough tucked somewhere within the electrical pulsations at work within the gray blob otherwise known as my brain (itself more blob-like I think than most).
This, happily enough, is not a common nor an ongoing symptom, but one which arises at its own pleasure, whenever it will; and is, I believe, something that accompanies an active state of MS--a warning whisper, a rumor of war. It has become according to past experience my own diagnostic tool for identifying a relapse, just as reliable as the MRI, though much cheaper.
This buzz/hiss/pulse--this heavy breathing in my brain--comes along also with a sense of light-headedness and disorientation above the norm, and also vague nausea. Whenever this hits, I wonder first off what I can do about it, then remember that there is nothing to be done but to wait. It does finally go away on its own. So far, anyway.
I wonder if anyone else has this. It does seem that MS makes its attempt in each person to present an original character--so as to make each of us feel special, I think; and also to confuse doctors and frustrate timely diagnosis--and yet there are some common threads to be agreed upon--numbness and tingling in the extremities, for instance; fatigue; imbalance.
But how about the brain buzz in particular? Anyone out there feel me?
This, happily enough, is not a common nor an ongoing symptom, but one which arises at its own pleasure, whenever it will; and is, I believe, something that accompanies an active state of MS--a warning whisper, a rumor of war. It has become according to past experience my own diagnostic tool for identifying a relapse, just as reliable as the MRI, though much cheaper.
This buzz/hiss/pulse--this heavy breathing in my brain--comes along also with a sense of light-headedness and disorientation above the norm, and also vague nausea. Whenever this hits, I wonder first off what I can do about it, then remember that there is nothing to be done but to wait. It does finally go away on its own. So far, anyway.
I wonder if anyone else has this. It does seem that MS makes its attempt in each person to present an original character--so as to make each of us feel special, I think; and also to confuse doctors and frustrate timely diagnosis--and yet there are some common threads to be agreed upon--numbness and tingling in the extremities, for instance; fatigue; imbalance.
But how about the brain buzz in particular? Anyone out there feel me?
Wednesday, November 11, 2009
The Best Parts
"It would be nice to talk to the Bud we knew growing up, not the Richard guy whose wife and disease have taken the best parts of him."
So said my younger stepdaughter from my second marriage within the course of an e-mail exchange-- this among other gems of a like nature.
By wife she means my third wife, the woman I am married to now. By disease she means MS.
I hardly know what to make of this--only that it has rankled ever since. What is meant in saying that my disease has taken the best parts of me? And what would the solution be? To suddenly, by choice, simply not have the disease anymore?
But of course, to ruminate along these lines is to add complexity to something that is really quite simple. We have all been here before. What we hope to convey by way of explanation, by way of education, is seen as mere excuse. The struggle we maintain day by day to function despite the comprising process we have to live with is seen by others as a cowardly sort of convenience, a sham, a ruse, essentially a lie. It is a lie employed to gain leverage by way of sympathy so that we do not have to face the real truth.
We have learned this nearly from the start--we have learned it as one of the very first things--People do not want to hear about it. It seems to make an unfair demand upon their stores of compassion. It is something that would require a sort carefulness and charity beyond the scope of their own convenience.
Again and again I have learned the hard way to just not mention MS at all. It tries the patience of healthy people beyond all endurance. Are the effects that this disease has had upon our abilities, upon our emotions, upon our energy, upon our minds, upon our capacity to bear stress mere inventions? No, of course not. Do these people have any idea how maddening it is for them to suggest that we choose to live this way, that we enjoy these limitations? No, of course they don't. Nor do they want to.
We are painfully aware of our weaknesses, of our deficits, and so we attempt to explain in the interest of what is factual in order that continuing relationship may take account of the situation as it is and proceed accordingly.
But my friends, it is a waste of breath, ending only in an extravagant expenditure of energy that is in short supply to begin with.
Perhaps it is best after all to simply agree--Yes, you're right, my disease and my wife have taken the best parts of me. So sad.
And then change the subject.
So said my younger stepdaughter from my second marriage within the course of an e-mail exchange-- this among other gems of a like nature.
By wife she means my third wife, the woman I am married to now. By disease she means MS.
I hardly know what to make of this--only that it has rankled ever since. What is meant in saying that my disease has taken the best parts of me? And what would the solution be? To suddenly, by choice, simply not have the disease anymore?
But of course, to ruminate along these lines is to add complexity to something that is really quite simple. We have all been here before. What we hope to convey by way of explanation, by way of education, is seen as mere excuse. The struggle we maintain day by day to function despite the comprising process we have to live with is seen by others as a cowardly sort of convenience, a sham, a ruse, essentially a lie. It is a lie employed to gain leverage by way of sympathy so that we do not have to face the real truth.
We have learned this nearly from the start--we have learned it as one of the very first things--People do not want to hear about it. It seems to make an unfair demand upon their stores of compassion. It is something that would require a sort carefulness and charity beyond the scope of their own convenience.
Again and again I have learned the hard way to just not mention MS at all. It tries the patience of healthy people beyond all endurance. Are the effects that this disease has had upon our abilities, upon our emotions, upon our energy, upon our minds, upon our capacity to bear stress mere inventions? No, of course not. Do these people have any idea how maddening it is for them to suggest that we choose to live this way, that we enjoy these limitations? No, of course they don't. Nor do they want to.
We are painfully aware of our weaknesses, of our deficits, and so we attempt to explain in the interest of what is factual in order that continuing relationship may take account of the situation as it is and proceed accordingly.
But my friends, it is a waste of breath, ending only in an extravagant expenditure of energy that is in short supply to begin with.
Perhaps it is best after all to simply agree--Yes, you're right, my disease and my wife have taken the best parts of me. So sad.
And then change the subject.
Thursday, October 15, 2009
My Skin Hurts
I finally figured things out yesterday. Yes, a word of wisdom came to me from on high, like a dead bird falling on my head, waking me from the slumber of self-diagnosis, snatching me from the labyrinthine avenues or organ systems, the circulatory maze of physiology.
What is MS and what is not?
And the survey says . . .
If the thing is weird, if it defies reason, if it will not choose an organ or a bone or any other malady known to man, then it is definitely MS.
I had been suffering a sharp pain that seemed to be deep, and quite focal, just under the left side of my ribcage. Yet, before I could really begin to properly enjoy this, it began to bounce like an echo back and forth between abdomen and back--hello, hello, hello, and so on.
Hm, that's kind of like a kidney stone, I think.
Ah, but the thing will not be pinned to any such determination. As if fearing discovery and capture, it flees yet again, leaping dolphin-like from the deep to the surface, exploding there and spreading, from sternum to backbone, from hip joint to nipple. Now it is not a fish, but a fog. It is nowhere in particular, it is everywhere in general.
And it hurts when I touch my skin. It hurts even when my shirt touches my skin. Which, of course, is always.
Stupid? Yes, of course it's stupid. It's MS!
Now MS, as most of my particular fellows will agree, does not like to be lonely, and must therefore bring along a companion. In this case, my case, this time around, it has brought along fatigue. Profound fatigue. You know what I mean. The kind that makes you feel like a puppet without a hand. I continue to work my eight hours, and yet they seem like eight days. I plod along at my desk practically forever, and yet only ten minutes have passed. Something strange has happened to time. It has been stretched like taffy, long enough to circle the house several times. I sit for a moment on the futon with the chihuahua and wake up a half hour later wondering what happened.
This is MS, no more questions, no more mystery. It is the illness without a medicine, the organ without a name, the secret bodily system that has no palpable presence and yet is completely and comprehensively there.
Shall I call the doctor? And then what shall I say? My skin hurts? And it's exhausting me?
Shall I take a pill? What pill? Arsenic? Cyanide?
Well . . .
The good thing, as always, is that this is hilarious. And laughter is the one thing that does not make it hurt. It is, in fact, the only medicine so far known to soothe.
What is MS and what is not?
And the survey says . . .
If the thing is weird, if it defies reason, if it will not choose an organ or a bone or any other malady known to man, then it is definitely MS.
I had been suffering a sharp pain that seemed to be deep, and quite focal, just under the left side of my ribcage. Yet, before I could really begin to properly enjoy this, it began to bounce like an echo back and forth between abdomen and back--hello, hello, hello, and so on.
Hm, that's kind of like a kidney stone, I think.
Ah, but the thing will not be pinned to any such determination. As if fearing discovery and capture, it flees yet again, leaping dolphin-like from the deep to the surface, exploding there and spreading, from sternum to backbone, from hip joint to nipple. Now it is not a fish, but a fog. It is nowhere in particular, it is everywhere in general.
And it hurts when I touch my skin. It hurts even when my shirt touches my skin. Which, of course, is always.
Stupid? Yes, of course it's stupid. It's MS!
Now MS, as most of my particular fellows will agree, does not like to be lonely, and must therefore bring along a companion. In this case, my case, this time around, it has brought along fatigue. Profound fatigue. You know what I mean. The kind that makes you feel like a puppet without a hand. I continue to work my eight hours, and yet they seem like eight days. I plod along at my desk practically forever, and yet only ten minutes have passed. Something strange has happened to time. It has been stretched like taffy, long enough to circle the house several times. I sit for a moment on the futon with the chihuahua and wake up a half hour later wondering what happened.
This is MS, no more questions, no more mystery. It is the illness without a medicine, the organ without a name, the secret bodily system that has no palpable presence and yet is completely and comprehensively there.
Shall I call the doctor? And then what shall I say? My skin hurts? And it's exhausting me?
Shall I take a pill? What pill? Arsenic? Cyanide?
Well . . .
The good thing, as always, is that this is hilarious. And laughter is the one thing that does not make it hurt. It is, in fact, the only medicine so far known to soothe.
Saturday, October 10, 2009
What Is and Is Not
What is MS and what is not? I know, I've asked the question 100 times already, and I presume that I'll ask it 100 more.
Take my recent back troubles, for instance, and the consequent difficulties with walking--caused by a compromised nerve complex, or a thing that is just simply itself, a bad back, a sudden movement positioning a particular disk such that it happens to sit on top of a nerve when I rise? Which was the actual cause?
Consider moreover the totally unreasonable amount of pain I have suffered since. Has the severity of the pain been exaggerated by MS as the already rickety central nervous system seeks to address the problem, or did I just really mess up my back this time around, without any contribution from MS whatsoever?
Why is this keeping me down twice as long as it had ever done before? Is it because the central nervous system has become less able, or is it because I am 10 years older?
And now there comes this strange pain in my abdomen. It is in the right upper quadrant and it is quite localized to one spot, as if a knife had been stuck up under my ribs. It is constant, and it wakes me at night (and yet it is bearable, unlike the pain that accompanies the passage of a kidney stone). I wake to find the pain bouncing rhythmically between my abdomen and my back, as if the devil was playing a game of ping pong with one of his demons.
What can this be?
Looking at my copy of Grey's anatomy, I find a big purple organ called the liver crouching lump-like in this very spot. So is this a liver problem? Then again, I am aware that right upper quadrant pain is often associated with gallbladder disease. So maybe that's it. Then again, maybe this is referred pain from the preexisting back injury.
Or . . . well, maybe it's MS.
How to sort the thing out? How to find the culprit's secret cove?
As I have generally done in the past, I decide once again that it may be more accurate to envision MS not as the causation for most problems and pains, but as an underlying predisposition toward trouble, the fatal crack in the foundation that has weakened every element of the dependent structure. It is, perhaps, that which potentially compromises every other function.
And it is MS which in the end makes its mark of finalization on the death certificate. Whatever the fatal process was, we find almost without fail that MS had its finger in the pie.
Complicated by, is the phrase. Chronic obstructive pulmonary disease, complicated by multiple sclerosis. Myocardial infarction, congestive heart failure, pneumonia, endstage kidney disease, cirrhosis of the liver, and so on and so forth, name your favorite, but don't forget to add that final punch line--complicated by multiple sclerosis.
If multiple sclerosis is found to complicate even death, is it not perfectly reasonable to presume that it has complicated everything else leading up to death?
Take my recent back troubles, for instance, and the consequent difficulties with walking--caused by a compromised nerve complex, or a thing that is just simply itself, a bad back, a sudden movement positioning a particular disk such that it happens to sit on top of a nerve when I rise? Which was the actual cause?
Consider moreover the totally unreasonable amount of pain I have suffered since. Has the severity of the pain been exaggerated by MS as the already rickety central nervous system seeks to address the problem, or did I just really mess up my back this time around, without any contribution from MS whatsoever?
Why is this keeping me down twice as long as it had ever done before? Is it because the central nervous system has become less able, or is it because I am 10 years older?
And now there comes this strange pain in my abdomen. It is in the right upper quadrant and it is quite localized to one spot, as if a knife had been stuck up under my ribs. It is constant, and it wakes me at night (and yet it is bearable, unlike the pain that accompanies the passage of a kidney stone). I wake to find the pain bouncing rhythmically between my abdomen and my back, as if the devil was playing a game of ping pong with one of his demons.
What can this be?
Looking at my copy of Grey's anatomy, I find a big purple organ called the liver crouching lump-like in this very spot. So is this a liver problem? Then again, I am aware that right upper quadrant pain is often associated with gallbladder disease. So maybe that's it. Then again, maybe this is referred pain from the preexisting back injury.
Or . . . well, maybe it's MS.
How to sort the thing out? How to find the culprit's secret cove?
As I have generally done in the past, I decide once again that it may be more accurate to envision MS not as the causation for most problems and pains, but as an underlying predisposition toward trouble, the fatal crack in the foundation that has weakened every element of the dependent structure. It is, perhaps, that which potentially compromises every other function.
And it is MS which in the end makes its mark of finalization on the death certificate. Whatever the fatal process was, we find almost without fail that MS had its finger in the pie.
Complicated by, is the phrase. Chronic obstructive pulmonary disease, complicated by multiple sclerosis. Myocardial infarction, congestive heart failure, pneumonia, endstage kidney disease, cirrhosis of the liver, and so on and so forth, name your favorite, but don't forget to add that final punch line--complicated by multiple sclerosis.
If multiple sclerosis is found to complicate even death, is it not perfectly reasonable to presume that it has complicated everything else leading up to death?
Wednesday, October 7, 2009
Is It, Or Is It Not?
How does one know whether a problem he is currently experiencing is MS or not MS? Moreover, how does he know whether MS has combined with the problem with the result of making the problem worse, or indeed whether the present problem is making the MS worse?
Shall we see multiple sclerosis as something which consistently invades and infects all other parts and processes of the body--and of the mind too, for that matter--or does it sometimes stand aloof, disinterested in, say, the broken bone, the torn muscle, or what have you?
As recently mentioned here, I happened to hurt my back the other day. All it took was rising suddenly from a chair. The same thing has happened 2 or 3 times in the past, and so I wasn't surprised to find myself groaning with pain on the dining room floor. I remember this happening somewhere in my 20s, and then again at about the age of 40. It's not pleasant, but it goes away in due time.
Nonetheless, I find myself wondering this time around, The pain seems more persistent, more severe, and has begun to radiate to my ribcage and my upper thighs. Was it like this before? Well, had I been blogging back then, I guess I'd know. But on the other hand, I guess there was no such thing as blogging back then.
In short, I begin to connect all things to MS. Was it MS, for instance, that had caused me to fall in the first place? The truth is, it happened so fast that I cannot now remember the mechanics of the thing. Did I fall first, and then feel pain; or did I feel pain first, then fall?
This is why we should all have camera crews to follow us around, kind of like Bear Grylis, only not so entertaining. Actually more like America's Funniest Videos.
Come to think, along those lines, it would likely be beneficial for each of us to have his own MRI scanner. That way we could take a look for any events that may have happened in the brain or spinal cord and therefore be able to say with some certainty whether MS had something to do with our latest mishap or not. Not that we could do anything about it one way or the other--but still, it would cut some corners, and some costs, and would be certainly more convenient than lining up at the hospital. Right? And when not in use, the thing could be easily enough disguised as a couch or a sparring bag.
Just a thought.
But for now I am left to merely wonder whether this problem with my back is the same old slipped disk that I've suffered in the past, or whether I'm feeling the effect of raw nerves newly stripped of their myelin sheath.
Time will tell. And that, in itself, is about the only sure thing there is with MS.
Shall we see multiple sclerosis as something which consistently invades and infects all other parts and processes of the body--and of the mind too, for that matter--or does it sometimes stand aloof, disinterested in, say, the broken bone, the torn muscle, or what have you?
As recently mentioned here, I happened to hurt my back the other day. All it took was rising suddenly from a chair. The same thing has happened 2 or 3 times in the past, and so I wasn't surprised to find myself groaning with pain on the dining room floor. I remember this happening somewhere in my 20s, and then again at about the age of 40. It's not pleasant, but it goes away in due time.
Nonetheless, I find myself wondering this time around, The pain seems more persistent, more severe, and has begun to radiate to my ribcage and my upper thighs. Was it like this before? Well, had I been blogging back then, I guess I'd know. But on the other hand, I guess there was no such thing as blogging back then.
In short, I begin to connect all things to MS. Was it MS, for instance, that had caused me to fall in the first place? The truth is, it happened so fast that I cannot now remember the mechanics of the thing. Did I fall first, and then feel pain; or did I feel pain first, then fall?
This is why we should all have camera crews to follow us around, kind of like Bear Grylis, only not so entertaining. Actually more like America's Funniest Videos.
Come to think, along those lines, it would likely be beneficial for each of us to have his own MRI scanner. That way we could take a look for any events that may have happened in the brain or spinal cord and therefore be able to say with some certainty whether MS had something to do with our latest mishap or not. Not that we could do anything about it one way or the other--but still, it would cut some corners, and some costs, and would be certainly more convenient than lining up at the hospital. Right? And when not in use, the thing could be easily enough disguised as a couch or a sparring bag.
Just a thought.
But for now I am left to merely wonder whether this problem with my back is the same old slipped disk that I've suffered in the past, or whether I'm feeling the effect of raw nerves newly stripped of their myelin sheath.
Time will tell. And that, in itself, is about the only sure thing there is with MS.
Saturday, October 3, 2009
Space Cadet
Totally spaced out today--a condition which for me is a deviation from baseline spaciness. It's something that just jumps you, like a sudden dog, or a mugger. It is just there, and you find yourself realizing it rather than experiencing its arrival. It is rather like reaching for your wallet only to find you have left it behind.
This morning I left my brain behind and did not know it--which is actually not surprising, for if one leaves his brain behind, then he does not presently have a brain to know with.
There is a sort of process to brainlessness that has a character of its own--something like the laws that govern dark space and black holes. The first I knew of the absence of my brain was when I called the bank on my cell phone. My paycheck should have been deposited last night, and yet I find only $300 in my account. What the hell? What now? Have my wages been garnished by a photo radar machine? Has there been a mix up in the automatic deposit? Did my wife take my card whilst I slept?
So I set about figuring out what I'm going to do. And I instantly realize that figuring is presently unavailable. The function has been left back at home with the rest of my brain. I head for Starbucks instead. Usually I can substitute caffeine for the unavailable portions of cognition, or at least to some degree. It's better than nothing.
Next, however, after five or ten minutes, I realize that I have taken a road to Starbucks that is quite entirely the wrong road. Why? Where am I headed? The bank? I don't know.
This throws a switch, like the ones used on railroad tracks, conveying the train left or right. Clattering along the wrong road, I suddenly realize that the bank did not show the deposit of my paycheck because I had called the wrong bank.
Ultimately I end up at Hollywood Video instead of Starbucks. Obviously I have stopped here to return a movie, though a quick search of my person and my car reveals that I have no movie to return.
I start to think about the last movie I saw, and yet discover that I know nothing whatsoever about it, not even the name.
The last movie I watched was last night, about 8 or 9 hours ago.
Caffeine, they say, is good for quite a number of ailments. It is good for heart disease, and for headaches. It has even been found to be good for MS. So here I am at Starbucks, sucking the life from my cappuccino. See now much better I'm thinking now?
This morning I left my brain behind and did not know it--which is actually not surprising, for if one leaves his brain behind, then he does not presently have a brain to know with.
There is a sort of process to brainlessness that has a character of its own--something like the laws that govern dark space and black holes. The first I knew of the absence of my brain was when I called the bank on my cell phone. My paycheck should have been deposited last night, and yet I find only $300 in my account. What the hell? What now? Have my wages been garnished by a photo radar machine? Has there been a mix up in the automatic deposit? Did my wife take my card whilst I slept?
So I set about figuring out what I'm going to do. And I instantly realize that figuring is presently unavailable. The function has been left back at home with the rest of my brain. I head for Starbucks instead. Usually I can substitute caffeine for the unavailable portions of cognition, or at least to some degree. It's better than nothing.
Next, however, after five or ten minutes, I realize that I have taken a road to Starbucks that is quite entirely the wrong road. Why? Where am I headed? The bank? I don't know.
This throws a switch, like the ones used on railroad tracks, conveying the train left or right. Clattering along the wrong road, I suddenly realize that the bank did not show the deposit of my paycheck because I had called the wrong bank.
Ultimately I end up at Hollywood Video instead of Starbucks. Obviously I have stopped here to return a movie, though a quick search of my person and my car reveals that I have no movie to return.
I start to think about the last movie I saw, and yet discover that I know nothing whatsoever about it, not even the name.
The last movie I watched was last night, about 8 or 9 hours ago.
Caffeine, they say, is good for quite a number of ailments. It is good for heart disease, and for headaches. It has even been found to be good for MS. So here I am at Starbucks, sucking the life from my cappuccino. See now much better I'm thinking now?
Tuesday, September 22, 2009
Not A Perfect Poster Boy
Frequently enough I get visits here from various advertising/public relations agencies in association with post labels concerning the products they are representing--Copaxone, for instance; Avonex, NuVigil, the upcoming oral interferons, so on and so forth.
Sadly, I am afraid they will not be finding much to work with here. Rather, mine are the viewpoints strictly avoided and ignored by these interests. These people, after all, are employed to sell, not to warn, and so naturally prefer their efforts to result in the happy injection or oral imbibing of the drug in question (so good, so painless, so tasty), after which he who has received will straightaway head out for a skydiving adventure or the challenge of mountain climbing.
Why dwell on the negative things? Kidney stones, cancer, weird itchy deformities that swell under the skin, seizure-like shakes and chills? Straining at a gnat and swallowing a camel.
Well, I'm a spoilsport. I have developed over the past three years this strange, apparently unreasonable frame of mind that insists on ascribing some sort of natural wisdom to the insistent objections of my body.
Hello? Yeah you! I'm tryin' to tell you something here, buddy. You know that stuff you just squirted into my leg? Well, it HURTS LIKE THE DEVIL! WTF, man?
Yo, did my eyes betray me, or did that pharmacy insert say something about CANCER?
Well, it probably won't happen to me. That's where we all start. That's where the race begins. It won't happen to me because . . . well, because I'm me, and not the other people it happens to.
And that is perfectly true. Right up until it happens. For, you see, MS was not something that would ever happen to me either . . . until it did.
So we begin again. We begin at MS. We learn that injected interferons cause flu-like symptoms in many users, but that these fade and all but disappear in most users after some time.
Naturally, I must be like most. In fact, I must be more than most (because, again, I am me).
A year later, lying in the bottom of the bathtub, shivering so violently that it seems I and the tub, vibrating so, must at any moment break through the wall and into the bedroom where my wife is sleeping--just like the Kool-Aid Guy--Oh Yeah!--it finally occurs to me in the most persuasive sort of way that perhaps these symptoms will not be fading after all.
On to Copaxone then. On to kidney stones. On to the ER bed in the hospital, writhing in pain I had never before imagined possible--pain straight from the bowels of hell.
You're going to shove what up my what and do what?! Lord have mercy!
And so I quit, happy at last to die a slow, seizure-less, kidney-stone-less, weird-itchy-lumpless, carcinoma-less death by MS.
Sure, I'm a spoilsport--and loving it to the bitter end.
Sadly, I am afraid they will not be finding much to work with here. Rather, mine are the viewpoints strictly avoided and ignored by these interests. These people, after all, are employed to sell, not to warn, and so naturally prefer their efforts to result in the happy injection or oral imbibing of the drug in question (so good, so painless, so tasty), after which he who has received will straightaway head out for a skydiving adventure or the challenge of mountain climbing.
Why dwell on the negative things? Kidney stones, cancer, weird itchy deformities that swell under the skin, seizure-like shakes and chills? Straining at a gnat and swallowing a camel.
Well, I'm a spoilsport. I have developed over the past three years this strange, apparently unreasonable frame of mind that insists on ascribing some sort of natural wisdom to the insistent objections of my body.
Hello? Yeah you! I'm tryin' to tell you something here, buddy. You know that stuff you just squirted into my leg? Well, it HURTS LIKE THE DEVIL! WTF, man?
Yo, did my eyes betray me, or did that pharmacy insert say something about CANCER?
Well, it probably won't happen to me. That's where we all start. That's where the race begins. It won't happen to me because . . . well, because I'm me, and not the other people it happens to.
And that is perfectly true. Right up until it happens. For, you see, MS was not something that would ever happen to me either . . . until it did.
So we begin again. We begin at MS. We learn that injected interferons cause flu-like symptoms in many users, but that these fade and all but disappear in most users after some time.
Naturally, I must be like most. In fact, I must be more than most (because, again, I am me).
A year later, lying in the bottom of the bathtub, shivering so violently that it seems I and the tub, vibrating so, must at any moment break through the wall and into the bedroom where my wife is sleeping--just like the Kool-Aid Guy--Oh Yeah!--it finally occurs to me in the most persuasive sort of way that perhaps these symptoms will not be fading after all.
On to Copaxone then. On to kidney stones. On to the ER bed in the hospital, writhing in pain I had never before imagined possible--pain straight from the bowels of hell.
You're going to shove what up my what and do what?! Lord have mercy!
And so I quit, happy at last to die a slow, seizure-less, kidney-stone-less, weird-itchy-lumpless, carcinoma-less death by MS.
Sure, I'm a spoilsport--and loving it to the bitter end.
Tuesday, September 15, 2009
My Little Corner of the World
I had the strangest experience this morning, which of course will be difficult to describe, as are all things concerning the crap MS dishes up.
I had gone out as usual to drive my son to school--generally an automatic sort of thing, you know? Not something one really thinks about, but just does.
And yet as soon as I turned onto Prescott street (3 blocks or so from our front door), everything suddenly looked wrong, out of place. It was a weird sort of spatial rearrangement, like everything was tilted, or had been shifted during the night, so that the streets seemed to be pointed more to the North than to the East, where they used to be. Everything seemed jarred loose from the familiar pattern, cross streets too acute in angle, buildings and houses displaced. It was a little bit like being on LSD, minus the feeling of euphoria.
Things looked so wrong in fact, that I was not sure I was going the right way. I found myself concentrating, watching for familiar landmarks, having to convince my mind that this was the proper route.
This disorientation persisted all the way to school and all the way back home. My mind continued to entertain two opposing perceptions--first that everything looked wrong, and secondly that I knew it was right.
I cannot help but feel, even as the confusion of perception fades, that this has been merely a peek at the world to come, a world where disorientation arises more and more frequently and the confidence of awareness looses ground. And it is a terrifying scenario, against which I ultimately have no defense.
It may be that my recent trauma with kidney stones and surgery has caused a relapse in MS. I note also a new aching in my legs--the same sensation that has long been present in my calves, but now having jumped to the backs of my thighs as well. It is an aching and a spasticity, as if the muscles had been tied in tight knots that cannot be undone.
So what do I do? Go back to Copaxone and add more kidney stones to my miseries as well? It doesn't seem like much of an answer to me.
Maybe there is no answer. Probably, rather. We are inclined to believe that every malady has a cure, that there is something we can do about this. All it takes is a call to the doctor, or more exercise, or a better diet, or 8 cups of water a day. We believe it to be so, even as we know it is not so. We believe it, because the alternative is unacceptable.
I had gone out as usual to drive my son to school--generally an automatic sort of thing, you know? Not something one really thinks about, but just does.
And yet as soon as I turned onto Prescott street (3 blocks or so from our front door), everything suddenly looked wrong, out of place. It was a weird sort of spatial rearrangement, like everything was tilted, or had been shifted during the night, so that the streets seemed to be pointed more to the North than to the East, where they used to be. Everything seemed jarred loose from the familiar pattern, cross streets too acute in angle, buildings and houses displaced. It was a little bit like being on LSD, minus the feeling of euphoria.
Things looked so wrong in fact, that I was not sure I was going the right way. I found myself concentrating, watching for familiar landmarks, having to convince my mind that this was the proper route.
This disorientation persisted all the way to school and all the way back home. My mind continued to entertain two opposing perceptions--first that everything looked wrong, and secondly that I knew it was right.
I cannot help but feel, even as the confusion of perception fades, that this has been merely a peek at the world to come, a world where disorientation arises more and more frequently and the confidence of awareness looses ground. And it is a terrifying scenario, against which I ultimately have no defense.
It may be that my recent trauma with kidney stones and surgery has caused a relapse in MS. I note also a new aching in my legs--the same sensation that has long been present in my calves, but now having jumped to the backs of my thighs as well. It is an aching and a spasticity, as if the muscles had been tied in tight knots that cannot be undone.
So what do I do? Go back to Copaxone and add more kidney stones to my miseries as well? It doesn't seem like much of an answer to me.
Maybe there is no answer. Probably, rather. We are inclined to believe that every malady has a cure, that there is something we can do about this. All it takes is a call to the doctor, or more exercise, or a better diet, or 8 cups of water a day. We believe it to be so, even as we know it is not so. We believe it, because the alternative is unacceptable.
Saturday, August 29, 2009
One More Toss of the Stone
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.
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.
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.
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?
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.
Friday, July 31, 2009
Vacation
Two things that do not work with MS.
1. Heat.
2. Activity.
Heat and activity combined could probably put me in the hospital 9 times out of 10.
Activity is more or less avoidable. Heat is not.
Two weeks of vacation at my disposal, and all I can do is lie on the bed and sweat.
I had certain vague plans--a trip to the mountains, swimming in the river, maybe a day trip to the beach. As it happens, however, my legs are not working, and every time I stand up I feel like vomiting.
Distance + energy required = a two week vacation in Portland.
I become, therefore, my wife's sopir, which translated from the Indonesian means driver. All day long we traveled about Portland and the surrounding area in her air conditioned car as she attended to business appointments and client meetings. As can be imagined, it was a heck of a lot of fun.
My wife and I are very unalike. Have I mentioned that before? Of course I have. In her mind a vacation is a period of time during which one can get even more work done than usual.
I myself had always pictured lying on the beach under the shade of an umbrella, reading a book.
Well, each to his own.
In any case, for the time being, like it or not, it's all about nausea, sweat, and profound fatigue.
1. Heat.
2. Activity.
Heat and activity combined could probably put me in the hospital 9 times out of 10.
Activity is more or less avoidable. Heat is not.
Two weeks of vacation at my disposal, and all I can do is lie on the bed and sweat.
I had certain vague plans--a trip to the mountains, swimming in the river, maybe a day trip to the beach. As it happens, however, my legs are not working, and every time I stand up I feel like vomiting.
Distance + energy required = a two week vacation in Portland.
I become, therefore, my wife's sopir, which translated from the Indonesian means driver. All day long we traveled about Portland and the surrounding area in her air conditioned car as she attended to business appointments and client meetings. As can be imagined, it was a heck of a lot of fun.
My wife and I are very unalike. Have I mentioned that before? Of course I have. In her mind a vacation is a period of time during which one can get even more work done than usual.
I myself had always pictured lying on the beach under the shade of an umbrella, reading a book.
Well, each to his own.
In any case, for the time being, like it or not, it's all about nausea, sweat, and profound fatigue.
Wednesday, July 29, 2009
A Scorcher
Hooooooey! Somewhere around 107 degrees now, and I've been driven from my house, in search of air conditioning. Old fantasies of moving to Arizona one day have now wholly evaporated. No Frickin Way!
Heat like this is also another first in my relationship with MS. I had thought in the past that heat really did not affect me very much--or as much, anyway, as I had heard other people describe. Now I know better--for this sort of heat pushes MS and the overtaxed nervous system way over the hill of no return. It's like a certain point comes where there is no way to cool the overheated wires, and little fires begin to break out all over. Sensation in the toes, never veyr good in the first place, gets shut off altogether--what toes? The brain begins to drip like hot wax, calf muscles simulate silly putty.
But Oh this Starbucks feels so fresh and cool. I fully intend to hide behind the counter later and sleep here overnight.
Earlier on I felt like I was going to be sick. Felt nauseated, dizzy, off balance, developed a splitting, throbbing headache, and felt as if I might at any moment vomit. But see, I had always loved the heat the past--the pre-MS past. It had never bothered me--no, not even heat such as this. So obviously something has changed, right? Well, of course it has.
If there is one feeling in all the world that I really, really hate, it is nausea. I have always felt sorry for those with MS who have ended up with the vertigo/dizziness/nausea symptoms. Yikes.
Well, sorry if this sounds like a weather report. I'm just finding any reason I can to stay in this cool air for as long as I can.
Heat like this is also another first in my relationship with MS. I had thought in the past that heat really did not affect me very much--or as much, anyway, as I had heard other people describe. Now I know better--for this sort of heat pushes MS and the overtaxed nervous system way over the hill of no return. It's like a certain point comes where there is no way to cool the overheated wires, and little fires begin to break out all over. Sensation in the toes, never veyr good in the first place, gets shut off altogether--what toes? The brain begins to drip like hot wax, calf muscles simulate silly putty.
But Oh this Starbucks feels so fresh and cool. I fully intend to hide behind the counter later and sleep here overnight.
Earlier on I felt like I was going to be sick. Felt nauseated, dizzy, off balance, developed a splitting, throbbing headache, and felt as if I might at any moment vomit. But see, I had always loved the heat the past--the pre-MS past. It had never bothered me--no, not even heat such as this. So obviously something has changed, right? Well, of course it has.
If there is one feeling in all the world that I really, really hate, it is nausea. I have always felt sorry for those with MS who have ended up with the vertigo/dizziness/nausea symptoms. Yikes.
Well, sorry if this sounds like a weather report. I'm just finding any reason I can to stay in this cool air for as long as I can.
Friday, July 17, 2009
R&R
Need to recuperate somehow, take some downtime. A lot of stress recently has given the MS a couple of good hard twists, and I end up entirely sprained--mind, body, and soul. Feels like a combination of mononucleosis and Parkinson's disease. Just want to sleep, but muscles keep hopping all over. Feel kind of like something that's dead, but its nerves keep on twitching, ya know?
I had to take two hours off work last night. Just shut down, unable to think, feverish, aching. I just crashed. Fell over into bed in my clothes and the lights went out.
No such luxury tonight. Must find a way to stay awake and function.
In the meantime what I want to do, what I mean to do, my freedom of action outside of work gets shoved to the back burner, delayed, postponed until further notice. There are not enough resources to go around. Obviously this makes life rather dreary. But there you have it. It's the old up against a brick wall scenario.
I read recently that the Japanese nation during the last year of World War II, desperate for oil to fuel its war machine, employed tens of thousands of her children in digging up roots that produced a small amount of a substance that could be turned into oil. Drop by drop. Literally a drop in the barrel.
That seems pretty close to my present level of functioning.
I had to take two hours off work last night. Just shut down, unable to think, feverish, aching. I just crashed. Fell over into bed in my clothes and the lights went out.
No such luxury tonight. Must find a way to stay awake and function.
In the meantime what I want to do, what I mean to do, my freedom of action outside of work gets shoved to the back burner, delayed, postponed until further notice. There are not enough resources to go around. Obviously this makes life rather dreary. But there you have it. It's the old up against a brick wall scenario.
I read recently that the Japanese nation during the last year of World War II, desperate for oil to fuel its war machine, employed tens of thousands of her children in digging up roots that produced a small amount of a substance that could be turned into oil. Drop by drop. Literally a drop in the barrel.
That seems pretty close to my present level of functioning.
Friday, July 3, 2009
Postscript
After yesterday's visit with the neurologist, examination and discussion, it would appear that for all practical purposes there's nothing much wrong with me. Whew, what a relief. It's all in my head.
But hold on a sec . . . that's just the problem! That's what I was trying to say. It's in my head, in my brain. There's something wrong with my brain!
Lordy, Lordy.
Well I got some new pills, and the doc ordered another MRI.
Other than that, I'm on my own.
Having mustered the boldness to fuss and complain (not easy for a chronic stoic), to tell the doc straight out that based on my symptoms now as opposed to my symptoms a year ago, even a month ago, it seems clear to me that most everything has gotten worse--the stiffness in my legs, the aching, the imbalance, the fatigue, the eyesight, and the confusion--yes, most of all the confusion--he left me with the clinical gem that most patients (perhaps 70 percent) will rate the symptoms they are suffering as worse over time, when in fact they have remained clinically at baseline.
So, uh . . . yer calling me a liar?
So I am to double up on my baclofen and also begin a new prescription--NuVigil, a new improved version of Provigil, more potent, long acting.
Well hell, if they'd make this stuff available over the counter, I'd forget the doctors and treat myself.
Honestly, I'm just about to scrap all this--except for the MS, which seems rather doggedly attached to me--and keep my troubles to myself in the future.
I guess there are not a whole lot of good things to say about MS, but at least there is this: It is faithful to the bitter end.
This is a faithful saying and worthy of all acceptance.
1 Timothy 4:9
But hold on a sec . . . that's just the problem! That's what I was trying to say. It's in my head, in my brain. There's something wrong with my brain!
Lordy, Lordy.
Well I got some new pills, and the doc ordered another MRI.
Other than that, I'm on my own.
Having mustered the boldness to fuss and complain (not easy for a chronic stoic), to tell the doc straight out that based on my symptoms now as opposed to my symptoms a year ago, even a month ago, it seems clear to me that most everything has gotten worse--the stiffness in my legs, the aching, the imbalance, the fatigue, the eyesight, and the confusion--yes, most of all the confusion--he left me with the clinical gem that most patients (perhaps 70 percent) will rate the symptoms they are suffering as worse over time, when in fact they have remained clinically at baseline.
So, uh . . . yer calling me a liar?
So I am to double up on my baclofen and also begin a new prescription--NuVigil, a new improved version of Provigil, more potent, long acting.
Well hell, if they'd make this stuff available over the counter, I'd forget the doctors and treat myself.
Honestly, I'm just about to scrap all this--except for the MS, which seems rather doggedly attached to me--and keep my troubles to myself in the future.
I guess there are not a whole lot of good things to say about MS, but at least there is this: It is faithful to the bitter end.
This is a faithful saying and worthy of all acceptance.
1 Timothy 4:9
Tuesday, June 23, 2009
Cloudy Vision
A couple days ago I had another one of these episodes where it seemed suddenly that I was going blind. The last time this happened was at night when I was in bed and was cured by emergent copulation.*
This time however my wife was in California and the episode happened in the afternoon just as I had logged in for work. The first thing that I noted was that I could hardly see the computer screen, let alone characters in type thereon. No matter how close I got to the screen, the letters would not come into focus. Since I work as a medical transcriptionist, not being able to see what I am typing is definitely a problem--for me, for the doctors, and for whatever poor hospital patient happens to be in my cue.
After perhaps 45 minutes had passed with no resolution of the problem, I finally called my neurologist--for although problems with my eyes have been ongoing for the past year, this was definitely much worse than what I've become accustomed to.
After another half hour the doctor returned my call. Ironically, as so often happens, my problems with vision were by then improving, just as suddenly as they had begun. It appeared also that my main fear, that this was a result of MS--was unfounded, for the difficulties that I described did not sound to the neurologist like anything that would be associated with optic neuritis. Nor did it sound like the problems one would have with cataracts.
More likely, he said, it is a migrainous symptom.
Hm. Well, it was true that I had a bit of a headache--I have one most every day--but I had always supposed that headaches termed as migrainous would be more severe.
So what do I do? Take an aspirin?
Yup.
My vision since then has returned to completely normal--which is to say in essence that I simply cannot see very well.
In an odd way I would have felt better if it had been determined that this progressive loss of vision is caused by MS. I mean what the hell--You mean to say that I'm going blind for no particular reason? What kind of quackery is that!
* Applicants for my private and confidential research study on the curative effects of sexual intercourse on multiple sclerosis are still being (eagerly) sought and accepted by the Author (come on folks, a database can hardly be erected without willing subjects).
Thursday, June 11, 2009
Please Enter User Name and Password
Yesterday afternoon I had one of the most frightening MS moments (or rather, hours) in my illustrious MS career thus far.
At about 2:25 I sat down at my desk to start work, powered up the computer, waited for the login screen, took a couple sips of coffee while waiting. The user name and password came up, I lifted by hands, and then . . . nothing!
I could not remember my user name to save my life! I had no idea whatsoever. I have been doing this job for 17 years, I have been using this particular system, and user name, and password, for at least 4 years. And yet suddenly I had no idea in the world what to type into the field.
At first it was a Wow, that's weird sort of moment, but as the moments passed and nothing clicked, as the moments passed and became minutes and then a quarter hour and then a half hour, as the moments passed and every stab in the dark I took at typing in a likely user name failed, weird became frustrating, then maddening, then terrifying.
I suppose this is difficult to convey to anyone who has not experienced it. I suppose we have all had these moments where we just suddenly draw a blank--a name, a date, a memory--but of course such information temporarily misplaced soon pops back, and we chuckle and proceed.
Here there was no resumption, no revival, no retrieval, but only a quickening of the heart, a rising heat on the brow, a growing stuffiness in the brain, a dawning sense of panic.
The minutes marched on, ever away from revelation. The blank slate became if anything blanker. I began to search next for someone I could call, a coworker who might provide some sort of mnemonic, a phrase, a hint.
Now I had learned long ago that sharing ones troubles with MS among managers or supervisors in ones workplace is not the best idea. The sympathy that one somehow automatically anticipates does not in fact generally exist. There is, however, a friend and coworker who has been helpful in the past, who moreover will keep my terrible secret of incompetence, and so I sought now to locate her telephone number.
The idea that my current state of distraction could be further compounded had not occurred to me--until, that is, I found that I had not the slightest notion of where this person's phone number might be. Most certainly I had it. Somewhere. But where? I have, in fact, a printout of every phone number of every coworker in my department. Somewhere.
Knowledge, of course, is not presence. Two thorough searches of the desk drawers produced nothing--or rather, it produced everything conceivable other than that list of phone numbers.
By now a full hour had passed, and still I had not started work. My user name, my password, had fallen quite off the face of the earth, along with my brain.
Well, there is no amazing or edifying end to this. I wish there were. As it happens, the missing information simply popped back into my mind as abruptly as it had popped out. Sixty-five minutes later. I typed it in and began work. Later on I wrote the information on a strip of masking tape and stuck it on the side of the CPU.
What is left now is just a simmering sense of dread, a sense of just how bad things could become. And the knowledge that there's not a damn thing that I can do about it.
Wednesday, May 20, 2009
Climbing, Leaping, and Other Compulsions Associated with Multiple Sclerosis
Why must the onset of multiple sclerosis lead so often to a sudden desire to climb mountains or jump out of airplanes?
I see it so depicted in magazine after magazine, in brochures and in seminar invitations, to such an extent that I can hardly deny it must be so; and yet I have to admit in all honesty that I have not experienced this same compulsion, neither before nor after being diagnosed with MS.
Is there something wrong with me? Is there something wrong, something lacking in my particular case of MS?
I cannot help but feel guilty. Shouldn't I be wanting to scale something--the neighbor's garage, for instance--and then straightaway wanting to leap from the highest point thereof?
Once upon a time Satan was talking to Jesus.
He brought Him to Jerusalem, set Him on the pinnacle of the temple, and said to Him, "If You are the Son of God, throw Yourself down from here. For it is written:
'He shall give His angels charge over you,
To keep you, and in their hands they shall bear you up,
Lest you dash your foot against a stone.'"
And Jesus, perfectly free of MS, mind you, as well as any other bodily malady, answered thus-wise:
"It has been said, 'You shall not tempt the LORD your God.'"
It occurs to me, where mountain peaks are concerned, that if I was supposed to be on one, God would have put me there in the first place. After all, He had the good sense to put the monkey in the jungle and the whale in the sea; the worms in the ground and the bunnies in the bushes.
And what did He put on the mountain peak?
Snow.
Do I have a witness?
Nonetheless, it is the testimony of our eyes, upon the perusal of all the available material, that among all the curious symptoms associated with MS is the sudden inclination also to perform great feats of strength and daring--feats which, incidentally, are now quite beyond our capacity--white water rafting, surfing, bungee jumping, kangaroo riding, tree climbing, marathon running, and such-like.
How does this hyperactive, somewhat pointless impulse come about? What is it about damage to the central nervous system that causes skydiving?
These are questions that need further research. For now I can only admit to the existence of the symptom, and bemoan its utter lack of presence in my case. As it stands, I cannot climb the mountain--the stairs in my house are enough. I cannot commune with the clouds in the sky, for those in my brain are sufficiently thick on their own.
Can someone say amen?
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