Just a quick check-in.
Things are going very rockily. I'm hoping that maybe today I can go outside and water my tomatoes. I may not be able to do that without help; the last time I tried it without help I was successful, but it cost a lot, emotionally/psychically/spiritually. It cost a lot.
Yesterday or the day before (I forget which), I was actually able to sit at my studio computer and write music. The thing I'm working on takes a lot of notes; I didn't do that many measures, but I did get a lot of notes input. Still got lots 'o work to do on it, but at least I got something done.
Gonna try to keep going on that today.
One of my new herbal treatments doesn't fill me with vim and vigor, but it does at least remove some of the pain (stupid dull aching), and although I do need to take breaks to lie down, at least it's keeping me out of the dark forest of "I have to sleep NOW NOW NOW" that I have been too steadily living in.
I got some stuff done; synch'ed my iPhone, did some corresponding. Did this.
Next, gonna unplug my iPhone and park it back in the bedroom; maybe make a new cup of tea. Right now on my Tall Monitor, I've got an orchestral score I'm getting some ideas from. Gotta take a few minutes to look at yet another score, this one on (who'da thunk it) paper. You remember that stuff, I'm sure. Unquestioned advantage to paper: you can drop it, the cat can crawl over it, you can drop stuff on it, and it still works as perfectly as the day it was first created. This particular score has got all sorts of my scrawls all over it, which make it even more useful. Suck on that, digital world!
Snag a dose of tummy formula (a Chinese patent medicine called "Po Chai," works for me, always has).
Then, if all goes well, back to composing.
The scrabbling through the muck that's a necessary part of the creative process is hard to accept as "necessary," when just sitting up and operating the device is difficult. But, as Tom Hanks described his own process of developing the Forrest Gump voice, "You have to suck, before you can be good."
The sucking en route to good... that, I don't mind at all.
The amount of time I have to take sitting at the machine, especially with everything that's going on physically (or not, depending on what we're talking about)... that's hard.
Actually, it sucks. But didn't I just say that sucking en route to good doesn't bother me?
Ah, there's suck, and then there's suck.
Which, I guess...sucks?
Friday, June 28, 2013
Sunday, June 23, 2013
VERY hard
It's taking a lot just to do this, today. I'm not "sitting" at a computer, I'm in a recliner with a laptop in my lap. I had imagined how wonderful it would be to sit at my computer, and actually write music. Ah, yes, wouldn't that be nice.
Sometimes I've gotten into a "Damn it, I am so going to do this anyway!" and left the house to pick up tea or a snack or go shopping or whatever.
I wish I could get into a "Damn it, I am so going to do this anyway!" for music writing. Who knows, maybe after I put this down, I will.
Or not.
I know that something about doing the physical therapy is truly profoundly soul-damaging. Not "body damaging," the therapists are too good, I can tell that what muscles are getting exercised are getting stronger.
But it is soul-damaging.
So is, I must also say, simply trying to do thing physically. Yesterday, I went outside to admire and water my tomatoes. A horrible, horrible experience. The tomatoes are fine, thank goodness, but I'm not. Trying to use my walker/transport-chair as a walker was nearly disastrous, I felt like any minute I was going to collapse hard onto the cement of the back patio. I didn't, fortunately, I spent the rest of the adventure seated, scooting the chair around as best I could. Which was, alas, none too well.
Everything is almost too hard to do. Everything.
I'm seeing my acupuncturist/MD tomorrow, and with luck picking up some new herbs Tuesday (the purveyor told me that they'd be getting a new shipment of stuff required for my formula Monday, it'd be ready for pickup Tuesday... that's the plan, at least). Both of these things do a pretty good job of dispelling darkness, and the new herbal formula is very good about soothing the vague aches that have been plaguing me (and are doing even now, as I type this).
I've read all sorts of things about what other people have described as their own MS experiences, but this isn't about paralysis, or spasticity, or good-old-fashioned fatigue... it's something more horrible.
The Minbari on Babylon 5 had a word, "Seh'lich sakar": Soul-sick. I'm sure this isn't what Joe Straczynski had in mind when he created the series, but boy, am I ever.
So, what to do? An old saying holds "Before enlightenment, chop wood, carry water; after enlightenment, chop wood, carry water." Well, in my current state, I can't do either. So, I'll take some herbs, maybe make some tea. Will I try to write music?
We'll see.
And this is especially interesting (that's the polite word for it). As a composer, I've been "stuck," I've been "struggling," I've been "dry," I've been all sorts of places that are all about "waiting for the creativity to kick in." But those are all temporary conditions, and what's most different about those and now is that everything inside me was working fine, I was just waiting for the muse to alight, and once she did, things went just beautifully.
Well, right now I've got my head in a bucket of concrete, I've got a messed up nervous system whose "non-functions" reveal themselves in ever so many tragically surprising ways, and as Jon Stewart was known to say... "I got nothing."
And that is hard. Very, very hard.
Now, I do try to tell myself every once and a while I get what little gumption it takes to tell myself things that this too shall pass, and that whatever anguish I'm feeling now will create some sort of treasure as yet to be discovered. I know this is true. But even so, right now, the "going through" it...
It's hard. Damned hard. Very, very, very hard.
Sometimes I've gotten into a "Damn it, I am so going to do this anyway!" and left the house to pick up tea or a snack or go shopping or whatever.
I wish I could get into a "Damn it, I am so going to do this anyway!" for music writing. Who knows, maybe after I put this down, I will.
Or not.
I know that something about doing the physical therapy is truly profoundly soul-damaging. Not "body damaging," the therapists are too good, I can tell that what muscles are getting exercised are getting stronger.
But it is soul-damaging.
So is, I must also say, simply trying to do thing physically. Yesterday, I went outside to admire and water my tomatoes. A horrible, horrible experience. The tomatoes are fine, thank goodness, but I'm not. Trying to use my walker/transport-chair as a walker was nearly disastrous, I felt like any minute I was going to collapse hard onto the cement of the back patio. I didn't, fortunately, I spent the rest of the adventure seated, scooting the chair around as best I could. Which was, alas, none too well.
Everything is almost too hard to do. Everything.
I'm seeing my acupuncturist/MD tomorrow, and with luck picking up some new herbs Tuesday (the purveyor told me that they'd be getting a new shipment of stuff required for my formula Monday, it'd be ready for pickup Tuesday... that's the plan, at least). Both of these things do a pretty good job of dispelling darkness, and the new herbal formula is very good about soothing the vague aches that have been plaguing me (and are doing even now, as I type this).
I've read all sorts of things about what other people have described as their own MS experiences, but this isn't about paralysis, or spasticity, or good-old-fashioned fatigue... it's something more horrible.
The Minbari on Babylon 5 had a word, "Seh'lich sakar": Soul-sick. I'm sure this isn't what Joe Straczynski had in mind when he created the series, but boy, am I ever.
So, what to do? An old saying holds "Before enlightenment, chop wood, carry water; after enlightenment, chop wood, carry water." Well, in my current state, I can't do either. So, I'll take some herbs, maybe make some tea. Will I try to write music?
We'll see.
And this is especially interesting (that's the polite word for it). As a composer, I've been "stuck," I've been "struggling," I've been "dry," I've been all sorts of places that are all about "waiting for the creativity to kick in." But those are all temporary conditions, and what's most different about those and now is that everything inside me was working fine, I was just waiting for the muse to alight, and once she did, things went just beautifully.
Well, right now I've got my head in a bucket of concrete, I've got a messed up nervous system whose "non-functions" reveal themselves in ever so many tragically surprising ways, and as Jon Stewart was known to say... "I got nothing."
And that is hard. Very, very hard.
Now, I do try to tell myself every once and a while I get what little gumption it takes to tell myself things that this too shall pass, and that whatever anguish I'm feeling now will create some sort of treasure as yet to be discovered. I know this is true. But even so, right now, the "going through" it...
It's hard. Damned hard. Very, very, very hard.
Friday, June 21, 2013
Musing on "lists"
I find myself musing on my life recently... a lot. Kind of a "life flashing before my eyes" experience.
And no, do NOT worry, I don't expect (and I am certainly not planning) any sort of "check out" process in the immediately foreseeable future. Which is why these experiences are ... interesting.
My doctor tells me that this happens to everybody, that I shouldn't be concerned about the "happening" of such musings, they mean nothing (certainly, about said "immediately foreseeable future").
In an I'm sure completely unrelated coincidence, I ran across stories about a "Before I Die" interactive art-installation in Chicago. And I of course look back at what I have done, MS-ification or not, and whether there's anything on my own "before I die" list.
Well, I have got a couple of things on a "dude, I really really really want to get some work on this done" list, but it hardly qualifies as a "bucket list." And I'm sure all of us MSers have such things on a similar list, things on the top of our "if this @#$#ing disease would just GET THE @#$#$ OUT OF THE WAY, I would do it immediately" list. But those are different. Or so I think, here and now, at least.
But I'm so "zero passion" nowadays, I don't really have a "bucket list." Or an anything list, besides a couple of "I really want to write those pieces" compositions, things that the way my health is expressing itself is flummoxing. I've been very lucky in life, I've actually crossed things off my "bucket list." Opportunities for so doing presented themselves to me, I didn't have to seek them. And they were wonderful.
But I'm not craving "peak experiences," I mostly want stuff to just get the @#$@# out of my way.
I want to write music instead of having to lie down. A lot. Repeatedly.
I want the dull ache out of my legs; what I've been given to ameliorate it works wonderfully, but it's one of the only herbal formulas I've been given that has side effects, and although they're very mild I can deal with them (and the more I work with this stuff, the better I'll get at it), I'd be very happy to have that stuff out of my way too.
I want to be able to walk and play the organ again. Although I will keep the hand controls installed in my truck, I quite enjoy them, I think they're an improvement to the entire "driving experience."
I want to be able to cook again, and clean up the house. And take on my "Dude, you really need to see to this pile of crap" piles of whatever (well, crap), without having even the attempt aborted by inability to stand up, carry, bend over, and all the stuff that such activities require.
But, as the saying goes, you'll never to to any graveyard and find a headstone that reads "If I could have only spent more time at the office."
But how tragically painful would it be to find, in that same cemetery, a gravestone that read "If I could have only walked, cooked, and played the organ again." How sad is that?
But if the last thing I do on this earth is NOT put that on my gravestone and thus NOT make somebody unhappy... I will. Or won't, depending on how you want to look at it. So, if my "bucket list" is to not depress people, and even make them happier...
As Prismo said of a wish he was asked to grant, "I can work with that."
And no, do NOT worry, I don't expect (and I am certainly not planning) any sort of "check out" process in the immediately foreseeable future. Which is why these experiences are ... interesting.
My doctor tells me that this happens to everybody, that I shouldn't be concerned about the "happening" of such musings, they mean nothing (certainly, about said "immediately foreseeable future").
In an I'm sure completely unrelated coincidence, I ran across stories about a "Before I Die" interactive art-installation in Chicago. And I of course look back at what I have done, MS-ification or not, and whether there's anything on my own "before I die" list.
Well, I have got a couple of things on a "dude, I really really really want to get some work on this done" list, but it hardly qualifies as a "bucket list." And I'm sure all of us MSers have such things on a similar list, things on the top of our "if this @#$#ing disease would just GET THE @#$#$ OUT OF THE WAY, I would do it immediately" list. But those are different. Or so I think, here and now, at least.
But I'm so "zero passion" nowadays, I don't really have a "bucket list." Or an anything list, besides a couple of "I really want to write those pieces" compositions, things that the way my health is expressing itself is flummoxing. I've been very lucky in life, I've actually crossed things off my "bucket list." Opportunities for so doing presented themselves to me, I didn't have to seek them. And they were wonderful.
But I'm not craving "peak experiences," I mostly want stuff to just get the @#$@# out of my way.
I want to write music instead of having to lie down. A lot. Repeatedly.
I want the dull ache out of my legs; what I've been given to ameliorate it works wonderfully, but it's one of the only herbal formulas I've been given that has side effects, and although they're very mild I can deal with them (and the more I work with this stuff, the better I'll get at it), I'd be very happy to have that stuff out of my way too.
I want to be able to walk and play the organ again. Although I will keep the hand controls installed in my truck, I quite enjoy them, I think they're an improvement to the entire "driving experience."
I want to be able to cook again, and clean up the house. And take on my "Dude, you really need to see to this pile of crap" piles of whatever (well, crap), without having even the attempt aborted by inability to stand up, carry, bend over, and all the stuff that such activities require.
But, as the saying goes, you'll never to to any graveyard and find a headstone that reads "If I could have only spent more time at the office."
But how tragically painful would it be to find, in that same cemetery, a gravestone that read "If I could have only walked, cooked, and played the organ again." How sad is that?
But if the last thing I do on this earth is NOT put that on my gravestone and thus NOT make somebody unhappy... I will. Or won't, depending on how you want to look at it. So, if my "bucket list" is to not depress people, and even make them happier...
As Prismo said of a wish he was asked to grant, "I can work with that."
Thursday, June 20, 2013
Shades of "can't"
Physical therapy is very... Oh, there doesn't seem to be one word. "Interesting," I guess, "challenging" it's of course supposed to be, "enjoyable" sometimes... but only sometimes. Sometimes it's very deeply wounding.
Part of the genius of these physical therapist's approach is to exercise specific muscles. Here, we're working a hip adductor, now we're working a hip abductor. They're a big Pilates house, they love working the core. And that's good!
But the specificity of their approach to individual muscles is also very, very, very specifically illuminating where my nervous system doesn't work. Because there are things that I just can't do, because my brain may request a muscle to move, but the message isn't getting through.
There's also some dissonance between me and the therapist's approach to the word "can't." Now, I know they're trying to keep spirits up, keep a positive approach, "perhaps what we're doing today is forging new connections which will enable you to do 'old' things in 'new' ways," and all of that "encouraging" stuff.
Well, here's the thing. I've been a musician all my life, and I have been a vocalist, a trombone-and-related-instruments brass player, an organist, a conductor, and a percussionist who yes had lessons (and very good ones) but I worked my ass off teaching myself to play timpani, snare drum (several styles), mallet percussion (especially xylophone and glockenspiel), and drum set: jazz (big band and small combo), a little bit of funk/fusion, and of course "generic Christian rock," as one of my friends described it. And oh yeah, kyudo. Which, oddly enough, is "spiritually" the same as the way I learned percussion (but that's definitely another story). I had to understand the magical "moves" of famous card magician Larry Jennings to document them. And they were not easy. I've done all sorts of amazing "physical doing" stuff.
But to return to the physical therapy discussion, I have very profound and very personal awareness of the different kinds of "can't."
For all of these, attitude can make a huge difference. Attitude is huge in converting "can't" to "can." Sometimes it's one of the prime components in the conversion of "can't" to "can."
But what I'm called upon to do in physical therapy is different, because of the state of my nervous system. "Move your leg there," the therapist asks. Nope. Ain't gonna happen. I'm doing the "trying" in as many ways as I can, and yeah maybe there's a way to "try" that I haven't found yet (and of course it's still worth trying said "new ways"), but were' talking about a different kind of "can't" here. It's "can't" and no qualifiers... just "can't."
Now yeah, I know that the nervous system is inherently self-correcting/constantly adapting, that damage can be "worked around" and all that. And I know that claiming "I can't" as a forever-o-Lord-thy-word-is-settled-in-Heaven permanent "given" is not therapeutically wise or desirable. And honestly, I'm not in that space, and it's correct for the therapists to steer me away from it.
But goddam it, when I say "I can't," it means that I can't. Here and now, whatever it is, I can't.
And the specificity of the physical therapy to address specific muscles in specific ways is forces me into a face-plant into "I can't."
And for all the help that I want to tell myself that it's doing for me, and for all the help that I can feel it's (sometimes) doing for me... I leave my physical therapy sessions subtly but profoundly, and deeply, wounded.
Haven't yet figured out how not to suffer like this. Hope I will sooner than later.
And, you'll notice, I didn't say "I can't figure out how." Because I really, really understand the shadings of "can't."
Except this one, I guess.
Part of the genius of these physical therapist's approach is to exercise specific muscles. Here, we're working a hip adductor, now we're working a hip abductor. They're a big Pilates house, they love working the core. And that's good!
But the specificity of their approach to individual muscles is also very, very, very specifically illuminating where my nervous system doesn't work. Because there are things that I just can't do, because my brain may request a muscle to move, but the message isn't getting through.
There's also some dissonance between me and the therapist's approach to the word "can't." Now, I know they're trying to keep spirits up, keep a positive approach, "perhaps what we're doing today is forging new connections which will enable you to do 'old' things in 'new' ways," and all of that "encouraging" stuff.
Well, here's the thing. I've been a musician all my life, and I have been a vocalist, a trombone-and-related-instruments brass player, an organist, a conductor, and a percussionist who yes had lessons (and very good ones) but I worked my ass off teaching myself to play timpani, snare drum (several styles), mallet percussion (especially xylophone and glockenspiel), and drum set: jazz (big band and small combo), a little bit of funk/fusion, and of course "generic Christian rock," as one of my friends described it. And oh yeah, kyudo. Which, oddly enough, is "spiritually" the same as the way I learned percussion (but that's definitely another story). I had to understand the magical "moves" of famous card magician Larry Jennings to document them. And they were not easy. I've done all sorts of amazing "physical doing" stuff.
But to return to the physical therapy discussion, I have very profound and very personal awareness of the different kinds of "can't."
- I can't because I don't understand how (especially "how to start"). Once I understand it, I'll probably be able to do it, or at least to work on it.
- I can't now, but I will eventually be able to. Maybe sooner, maybe later, but "can" is definitely gonna happen.
- I can't now, and I'll eventually be able to sort-of do it, but it's not my "thing" and there's only so good that I'll ever be with this, so let's work on something else and come back to this later. (Percussionists are called upon to play everything, but they always find that they're more comfortable/good at certain instruments, so those become "their thing." One fellow is good at everything, but BOY is he good at drum set, so that's what I'd call him for. Another one is good at everything, but BOY is he good at timpani, so that's what I'd call him for.)
- I can't now and I don't want to. Can/can't aside, this thing (whatever it is) just pisses me off. (Sometimes that can be modified into "but I can do it anyway," but sometimes it just pisses me off and I don't need to live in "can't" and "angry."
For all of these, attitude can make a huge difference. Attitude is huge in converting "can't" to "can." Sometimes it's one of the prime components in the conversion of "can't" to "can."
But what I'm called upon to do in physical therapy is different, because of the state of my nervous system. "Move your leg there," the therapist asks. Nope. Ain't gonna happen. I'm doing the "trying" in as many ways as I can, and yeah maybe there's a way to "try" that I haven't found yet (and of course it's still worth trying said "new ways"), but were' talking about a different kind of "can't" here. It's "can't" and no qualifiers... just "can't."
Now yeah, I know that the nervous system is inherently self-correcting/constantly adapting, that damage can be "worked around" and all that. And I know that claiming "I can't" as a forever-o-Lord-thy-word-is-settled-in-Heaven permanent "given" is not therapeutically wise or desirable. And honestly, I'm not in that space, and it's correct for the therapists to steer me away from it.
But goddam it, when I say "I can't," it means that I can't. Here and now, whatever it is, I can't.
And the specificity of the physical therapy to address specific muscles in specific ways is forces me into a face-plant into "I can't."
And for all the help that I want to tell myself that it's doing for me, and for all the help that I can feel it's (sometimes) doing for me... I leave my physical therapy sessions subtly but profoundly, and deeply, wounded.
Haven't yet figured out how not to suffer like this. Hope I will sooner than later.
And, you'll notice, I didn't say "I can't figure out how." Because I really, really understand the shadings of "can't."
Except this one, I guess.
Tuesday, June 18, 2013
Cortisone? Better? Silence...
Oh MAN, what a talk I had yesterday with my doctor, about mega-dosing steroids.
I'd been getting pressure from one of my health-care team (also an MSer) that yeah, she knows I don't feel a lot of affinity towards the "Western-medical approach," but maybe this time it might be worth trying. For those of you who don't know this treatment, it's 1000 mg of IV cortisone (or whatever the trade name is for whatever they use but basically, it's cortisone), once a day for three to five days, then often several more days of "taper," follow-up lessening dosages (which hopes to facilitate easing the body back in to producing its own cortisone, which it does anyway, but not in those dosages). Just for your reference, "standard" oral doses for arthritis, for which it's a common treatment, is I think 5-60ish mg per day. Not a thousand. Or, in other words, an entire gram of cortisone, intravenously. Per day. (And just for comparison, my daily dosage of thyroid hormone is five micro-grams.)
So, yesterday I spent much of my appointment with my MD/acupuncturist (also an MSer, who has himself had this very treatment) about a pile of questions I had. Now, I cannot stress this enough to my dear readers, that I am not making any recommendations, I am not claiming expertise, your milage may vary and all that stuff, and all I'm doing here is repeating what I remember of my questions and his answers. I'm not "recommending," I'm just sharing.
He said that cortisone therapy has been around for a while. Years ago (1960s, I think he said), they used to dose you with ACTH, which made your own body produce high doses of cortisone. They don't do that any more. He didn't know why.
At some point, they (whoever "they" are, we didn't talk about that) started doing this mega-dose stuff. It hasn't been formally tested. It can't be. Specifically, it can't be blind tested, the ideal being "double-blind" where neither the people administering nor the people testing know whether the medicine being tested is real or "placebo," in other words "fake." It can't be blind-tested because the symptoms of that dosage of this stuff is spectacularly obvious to everybody. So, this treatment has never gone through the formal testing that most treatments must undergo.
OK, I asked, what about non-mega dosages? Standard arthritis amounts tend to go up to 60-something mg from what Google led me to find, what about that dosage? Or just a little more, like 100mg? 200mg?
That hasn't been tried, as far as he knew. Nuclear-saturation-bombing dosages or nothing. He was conspicuously clear about not leaping forward to say "Well, let's try it!" From his point of view, small to moderate cortisone dosages were Simply Not Done, and from what he knew, never have been, and with him and me, we weren't going to try it.
OK, I said, my herbalist who's very much into not Google research but real research, and can actually understand scientific papers (and has written them) said that there's no difference between IV and oral with this treatment. Actually, he leaned towards me, looked sternly over his glasses, and vehemently said "NO difference." (Which comports with my non-scientist reading of what even I could find via Google.)
Well, my MD said, nobody does oral administration. It's IV or nothing. (See above about how he and I weren't going to be in the "experimentation" business.)
OK, I said, let's do a thought experiment: Using whatever method, and taking the surviving-the-entirely-nasty-treatment-experience off the table, let's assume that POOF! Absolutely zero inflammation! Nothing! All gone! Now that I am 100% inflammation free, how long does it take for the "getting better" to set in?
Silence.
This comports with my own non-scientist reading of what Google directed me to... they (whoever "they" are) know what the treatment experience is like, but post-treatment? Things getting "better"?
Silence.
Doc finally says that this whole regimen is confused by the variability of MS. Sometimes (especially with people with clear relapse-remit cycles), the symptoms just get better. Nobody knows how or why. They just do. One of my other caregivers said that one of the indicators of "it's MS that you've got," is that the symptoms keep changing. Constantly. So there's no way to know whether the patient's experience of "better" would have happened anyway just because of the variability of the disease; plus, nobody has any data about "here's when the patient got better because we gave them the steroid treatment."
Final decision: Bail. Nope, we're not gonna do the "steroid treatment." MD said that if you get optic neuritis and go blind, or some other nasty nasty things happen to you, there's not a lot of "worse" that it can get, so at that point it's worth trying the Hail Mary play. But until then... let's not.
Especially because I'm trying a new herbal formula (recommended by a different MD who's specifically expert in such things and to whom my regular MD referred me) in tincture, and for once with all things herbal, the taste ain't half bad. The stuff in this formula has been blind-tested to be neuro-protective and actually quite useful with MS patients, and my initial reaction was a feeling that could only be described using the word...
Better.
How often do we get to say that?
Which, from what I heard yesterday in my MD chat, isn't guaranteed or even available with mega-steroids, and certainly wouldn't be true of the treatment itself... That, at least, they know for sure. Everybody knows that for sure.
Well, one thing's definitely true about traveling the MS Highway... you sure do learn a lot.
I'd been getting pressure from one of my health-care team (also an MSer) that yeah, she knows I don't feel a lot of affinity towards the "Western-medical approach," but maybe this time it might be worth trying. For those of you who don't know this treatment, it's 1000 mg of IV cortisone (or whatever the trade name is for whatever they use but basically, it's cortisone), once a day for three to five days, then often several more days of "taper," follow-up lessening dosages (which hopes to facilitate easing the body back in to producing its own cortisone, which it does anyway, but not in those dosages). Just for your reference, "standard" oral doses for arthritis, for which it's a common treatment, is I think 5-60ish mg per day. Not a thousand. Or, in other words, an entire gram of cortisone, intravenously. Per day. (And just for comparison, my daily dosage of thyroid hormone is five micro-grams.)
So, yesterday I spent much of my appointment with my MD/acupuncturist (also an MSer, who has himself had this very treatment) about a pile of questions I had. Now, I cannot stress this enough to my dear readers, that I am not making any recommendations, I am not claiming expertise, your milage may vary and all that stuff, and all I'm doing here is repeating what I remember of my questions and his answers. I'm not "recommending," I'm just sharing.
He said that cortisone therapy has been around for a while. Years ago (1960s, I think he said), they used to dose you with ACTH, which made your own body produce high doses of cortisone. They don't do that any more. He didn't know why.
At some point, they (whoever "they" are, we didn't talk about that) started doing this mega-dose stuff. It hasn't been formally tested. It can't be. Specifically, it can't be blind tested, the ideal being "double-blind" where neither the people administering nor the people testing know whether the medicine being tested is real or "placebo," in other words "fake." It can't be blind-tested because the symptoms of that dosage of this stuff is spectacularly obvious to everybody. So, this treatment has never gone through the formal testing that most treatments must undergo.
OK, I asked, what about non-mega dosages? Standard arthritis amounts tend to go up to 60-something mg from what Google led me to find, what about that dosage? Or just a little more, like 100mg? 200mg?
That hasn't been tried, as far as he knew. Nuclear-saturation-bombing dosages or nothing. He was conspicuously clear about not leaping forward to say "Well, let's try it!" From his point of view, small to moderate cortisone dosages were Simply Not Done, and from what he knew, never have been, and with him and me, we weren't going to try it.
OK, I said, my herbalist who's very much into not Google research but real research, and can actually understand scientific papers (and has written them) said that there's no difference between IV and oral with this treatment. Actually, he leaned towards me, looked sternly over his glasses, and vehemently said "NO difference." (Which comports with my non-scientist reading of what even I could find via Google.)
Well, my MD said, nobody does oral administration. It's IV or nothing. (See above about how he and I weren't going to be in the "experimentation" business.)
OK, I said, let's do a thought experiment: Using whatever method, and taking the surviving-the-entirely-nasty-treatment-experience off the table, let's assume that POOF! Absolutely zero inflammation! Nothing! All gone! Now that I am 100% inflammation free, how long does it take for the "getting better" to set in?
Silence.
This comports with my own non-scientist reading of what Google directed me to... they (whoever "they" are) know what the treatment experience is like, but post-treatment? Things getting "better"?
Silence.
Doc finally says that this whole regimen is confused by the variability of MS. Sometimes (especially with people with clear relapse-remit cycles), the symptoms just get better. Nobody knows how or why. They just do. One of my other caregivers said that one of the indicators of "it's MS that you've got," is that the symptoms keep changing. Constantly. So there's no way to know whether the patient's experience of "better" would have happened anyway just because of the variability of the disease; plus, nobody has any data about "here's when the patient got better because we gave them the steroid treatment."
Final decision: Bail. Nope, we're not gonna do the "steroid treatment." MD said that if you get optic neuritis and go blind, or some other nasty nasty things happen to you, there's not a lot of "worse" that it can get, so at that point it's worth trying the Hail Mary play. But until then... let's not.
Especially because I'm trying a new herbal formula (recommended by a different MD who's specifically expert in such things and to whom my regular MD referred me) in tincture, and for once with all things herbal, the taste ain't half bad. The stuff in this formula has been blind-tested to be neuro-protective and actually quite useful with MS patients, and my initial reaction was a feeling that could only be described using the word...
Better.
How often do we get to say that?
Which, from what I heard yesterday in my MD chat, isn't guaranteed or even available with mega-steroids, and certainly wouldn't be true of the treatment itself... That, at least, they know for sure. Everybody knows that for sure.
Well, one thing's definitely true about traveling the MS Highway... you sure do learn a lot.
Friday, June 14, 2013
Considerations; inflammation; elipses (too many of them)
Wow... it has been a while (at least it feels like a long time) since I've had the strength to sit in the chair I'm sitting in at the moment, and take the time to share some thoughts here.
I was on the road a lot yesterday. I took a friend to This City to help him in clearing up some business, and then together we rode to That Other City to pick up a new herbal formula for myself.
Those of you non-Los Angeleans need to understand just how big/sprawled it is out here. The city of Los Angeles is the size of the state of Rhode Island, the county of Los Angeles is the size of the state of Connecticut. LA is big. Fortunately I didn't need to travel completely end-to-end through the county, but it was Quite. A. Trip.
Tiring. Hurtful tiring. But I made it. And the new herbal formula was worth the trip... it is doing a very nice job of getting rid of the pointless pain ("achey" rather than stabbing, fortunately) and also a good job of helping to keep the emotional/spiritual darkness from encroaching. Which, alas, it has been doing too much of, lately.
One of my physical therapists (nice lady, plus she has The Disease too) has been encouraging me to go for the Mega-Cortisone Path. 1,000mg per day, for several days, often between 3 and 5. Plus "taper off" time, taking less for a few days afterwards. Nowadays, it seems that it's quite common to do it via IV (no hospitalization required, somebody comes to your house, hooks you up for 20 minutes or so, comes back the next day and repeats), but one of my caregivers who's frighteningly good at research tells me that there is no difference--or as he expressed it, with eyebrows raised, "NO difference," between IV-administered and orally-administered megadoses of steroids. 'Course, the downside of "oral" is the number of pills you gotta chug; if you assume for the sake of argument that your typical steroid pill is 5mg, you gotta down 200 of them to put down 1,000mg. What and how many pills I'd have to down, I haven't researched yet.
But Caregiver One says that well, you're progressive so we know you have inflammation, cortisone (in those doses) eradicates inflammation, it's worth thinking about because your quality of life seems to be fading rapidly as well, and maybe getting rid of the inflammation might halt that progressive withering too? Caregiver Two (the one who said there was NO difference between IV and oral administration, so don't be scared of the IV stuff) said that it'll probably cooperate well with the treatments he's giving me, he doesn't think it'll turn sour Big Time, so it's worth considering...
I'm rolling the dice one last time with a very specific herbal treatment; after just a dose or two it feels very good to me, but your milage may vary, your caregivers have their own favorite methodology which may or may not (I'm guessing "not") embrace the sort of stuff that I do, but I'm sure a lot of us know about it by many names anyway, so I'll just leave it there for now. In short, what I'm doing now makes me feel (at least a little) better and doesn't make me feel worse, at all, so I'm inclined to let it ride for a little while and see if a Big Change comes about. And that my various caregivers can actually detect whether the "helping me" that I'm starting to feel is helping me enough, before I give in and go to the Nuclear Option with corticosteroids.
So, where's the "gift" in all this, it's quite fair to ask? Coming fully to terms with, confronting, issues that are so unpleasant (or that I assume will be "so unpleasant," and I'm talking about you, Nuclear Corticosteroid Option) but that are going to be waiting for me to deal with them whether I want to or not. And to add insult to injury (quite literally, actually), I'm still discovering some "oh crap, I thought I was done with dealing with that" emotional-baggage issues that, Disease-related or not, are still very much weighing me down.
And as someone whose air-quotes "walking" is degrading, "pointless painful baggage" is something that I do NOT need weighing me down. Carrying a bag of groceries up a flight of three steps is hard enough, I don't need "life crap" to carry too.
Oh my... I just realized that this emotional baggage is... inflammation. Which needs to be eradicated.
If it were only as easy as chugging a gram's worth of hormones.
Well, actually it is easy. Easier, even.
Just let it go.
And why is that so hard? Frankly, between you and me and everybody, I'd have loved to have discovered that particular "how to let go" lesson without the HUGE-air-quotes "assistance" of multiple sclerosis.
But I do have the "assistance" of MS. Which, I'd like to be sure, comes complete with a lesson that once learned will cut that emotional baggage loose. I can maybe intellectually create some scaffolding to undergird some pseudo-understanding, but the head is not where the connection needs to be made, because the head is not carrying the weight. It's something internal... Whatever is. the Internal Thing is carrying the weight, the Internal Thing needs to learn the lesson, and the Internal Thing is what needs to let go. Trying to out-think The Internal Thing ain't gonna fix it.
So, I can't explain it to you. Or to me. "Explaining" won't help. I have to come to terms with it inside. I have to feel it.
All of which is very much the path of Dealing With The Disease, isn't it? So I should already be quite familiar with what I need to do, right?
Right?
Yeah.... .... .... .... .... ....
I was on the road a lot yesterday. I took a friend to This City to help him in clearing up some business, and then together we rode to That Other City to pick up a new herbal formula for myself.
Those of you non-Los Angeleans need to understand just how big/sprawled it is out here. The city of Los Angeles is the size of the state of Rhode Island, the county of Los Angeles is the size of the state of Connecticut. LA is big. Fortunately I didn't need to travel completely end-to-end through the county, but it was Quite. A. Trip.
Tiring. Hurtful tiring. But I made it. And the new herbal formula was worth the trip... it is doing a very nice job of getting rid of the pointless pain ("achey" rather than stabbing, fortunately) and also a good job of helping to keep the emotional/spiritual darkness from encroaching. Which, alas, it has been doing too much of, lately.
One of my physical therapists (nice lady, plus she has The Disease too) has been encouraging me to go for the Mega-Cortisone Path. 1,000mg per day, for several days, often between 3 and 5. Plus "taper off" time, taking less for a few days afterwards. Nowadays, it seems that it's quite common to do it via IV (no hospitalization required, somebody comes to your house, hooks you up for 20 minutes or so, comes back the next day and repeats), but one of my caregivers who's frighteningly good at research tells me that there is no difference--or as he expressed it, with eyebrows raised, "NO difference," between IV-administered and orally-administered megadoses of steroids. 'Course, the downside of "oral" is the number of pills you gotta chug; if you assume for the sake of argument that your typical steroid pill is 5mg, you gotta down 200 of them to put down 1,000mg. What and how many pills I'd have to down, I haven't researched yet.
But Caregiver One says that well, you're progressive so we know you have inflammation, cortisone (in those doses) eradicates inflammation, it's worth thinking about because your quality of life seems to be fading rapidly as well, and maybe getting rid of the inflammation might halt that progressive withering too? Caregiver Two (the one who said there was NO difference between IV and oral administration, so don't be scared of the IV stuff) said that it'll probably cooperate well with the treatments he's giving me, he doesn't think it'll turn sour Big Time, so it's worth considering...
I'm rolling the dice one last time with a very specific herbal treatment; after just a dose or two it feels very good to me, but your milage may vary, your caregivers have their own favorite methodology which may or may not (I'm guessing "not") embrace the sort of stuff that I do, but I'm sure a lot of us know about it by many names anyway, so I'll just leave it there for now. In short, what I'm doing now makes me feel (at least a little) better and doesn't make me feel worse, at all, so I'm inclined to let it ride for a little while and see if a Big Change comes about. And that my various caregivers can actually detect whether the "helping me" that I'm starting to feel is helping me enough, before I give in and go to the Nuclear Option with corticosteroids.
So, where's the "gift" in all this, it's quite fair to ask? Coming fully to terms with, confronting, issues that are so unpleasant (or that I assume will be "so unpleasant," and I'm talking about you, Nuclear Corticosteroid Option) but that are going to be waiting for me to deal with them whether I want to or not. And to add insult to injury (quite literally, actually), I'm still discovering some "oh crap, I thought I was done with dealing with that" emotional-baggage issues that, Disease-related or not, are still very much weighing me down.
And as someone whose air-quotes "walking" is degrading, "pointless painful baggage" is something that I do NOT need weighing me down. Carrying a bag of groceries up a flight of three steps is hard enough, I don't need "life crap" to carry too.
Oh my... I just realized that this emotional baggage is... inflammation. Which needs to be eradicated.
If it were only as easy as chugging a gram's worth of hormones.
Well, actually it is easy. Easier, even.
Just let it go.
And why is that so hard? Frankly, between you and me and everybody, I'd have loved to have discovered that particular "how to let go" lesson without the HUGE-air-quotes "assistance" of multiple sclerosis.
But I do have the "assistance" of MS. Which, I'd like to be sure, comes complete with a lesson that once learned will cut that emotional baggage loose. I can maybe intellectually create some scaffolding to undergird some pseudo-understanding, but the head is not where the connection needs to be made, because the head is not carrying the weight. It's something internal... Whatever is. the Internal Thing is carrying the weight, the Internal Thing needs to learn the lesson, and the Internal Thing is what needs to let go. Trying to out-think The Internal Thing ain't gonna fix it.
So, I can't explain it to you. Or to me. "Explaining" won't help. I have to come to terms with it inside. I have to feel it.
All of which is very much the path of Dealing With The Disease, isn't it? So I should already be quite familiar with what I need to do, right?
Right?
Yeah.... .... .... .... .... ....
Monday, June 10, 2013
Light; Bach; Pepys
When things get really dark, "light" is something you notice right away. Even a little light, you see right away.
It has been many days since I had "it" together enough to sit at my computer for longer than 10 minutes, to be followed immediately by "I have to lie down now NOW NOW!"
But so far this morning, I'm able to spend some time sharing with you folks, and to get some gifts ordered from Amazon. Who knows, maybe I'll even make some tea. Might even take a couple of minutes to sit outside in the back yard to breathe, and listen. Before making the Great Journey to a day of medical appointments.
Light is nice. Even on a "June Gloom" morning, quite typical for Los Angeles this time of year. The local-TV meteorologists tend to say, in one breath, "late-night-and-early-morning-low-clouds," but the rest of us, we call it June Gloom. But that's OK... light through the clouds is still light.
Symptomatically, it has been a very dark time. Having enough energy to read Facebook (not what you'd call "heavy reading") is sometimes something I haven't had; lie in the bed with my eyes closed and just listen to something, maybe a cartoon, maybe some music. Although some of what I've always thought of as "my favorite music" has made me sad, taking me back to bygone times that Are No More. I don't necessarily mind being brought memories of The Goode Olde Days, but I don't particularly like listening to Bach organ music and going into "And THIS, you can't have, any more." Not that I was ever particularly able to play In Dir Ist Freude as fast and as cleanly as I wanted to, but I had a lot of fun working on it. And today, I can't. Not because I'm out of practice, but because I can't control my legs... I can barely control them enough to stand up without having a hand on something to assist/protect me.
But symptomatically, things have been going wrong. And then they go not all the way back to "right," but at least "not as wrong." You really don't want all of the details. I know I don't. Although, they have provided some interesting Zen-esque "acceptance" exercises; often, my reactions have been not rage, not fury, not sadness, just "Oh. Well."
They've been very interesting days, this last week. Moving from some-body-part goes "wack," and a feeling of complete soul-shredding, to something going "wack" and a reaction of "Oh. Well."
Is that what they mean by "relapsing/remitting"?
Plunging into darkness, then returning to the light, even "June Gloom" light, such as it is?
But before I contemplate that, after talking about having energy this morning... it's gone. I have to drive all the way to multiple doctors, and I'm already tired. Although Samuel Pepys, I'm sure, didn't say it for the reasons I do... but, in order to have enough energy to do all that driving and all that doctor's-office-ing...
As Pepys said it best, "And so to bed."
For a little while. To facilitate "And so to Santa Monica." Which doesn't have nearly as much poetry, but it does have its advantages. (That being where today's first doctor visit occurs.)
Well, we take what we can get. Even a little light, in the darkness, is very, very nice.
It has been many days since I had "it" together enough to sit at my computer for longer than 10 minutes, to be followed immediately by "I have to lie down now NOW NOW!"
But so far this morning, I'm able to spend some time sharing with you folks, and to get some gifts ordered from Amazon. Who knows, maybe I'll even make some tea. Might even take a couple of minutes to sit outside in the back yard to breathe, and listen. Before making the Great Journey to a day of medical appointments.
Light is nice. Even on a "June Gloom" morning, quite typical for Los Angeles this time of year. The local-TV meteorologists tend to say, in one breath, "late-night-and-early-morning-low-clouds," but the rest of us, we call it June Gloom. But that's OK... light through the clouds is still light.
Symptomatically, it has been a very dark time. Having enough energy to read Facebook (not what you'd call "heavy reading") is sometimes something I haven't had; lie in the bed with my eyes closed and just listen to something, maybe a cartoon, maybe some music. Although some of what I've always thought of as "my favorite music" has made me sad, taking me back to bygone times that Are No More. I don't necessarily mind being brought memories of The Goode Olde Days, but I don't particularly like listening to Bach organ music and going into "And THIS, you can't have, any more." Not that I was ever particularly able to play In Dir Ist Freude as fast and as cleanly as I wanted to, but I had a lot of fun working on it. And today, I can't. Not because I'm out of practice, but because I can't control my legs... I can barely control them enough to stand up without having a hand on something to assist/protect me.
But symptomatically, things have been going wrong. And then they go not all the way back to "right," but at least "not as wrong." You really don't want all of the details. I know I don't. Although, they have provided some interesting Zen-esque "acceptance" exercises; often, my reactions have been not rage, not fury, not sadness, just "Oh. Well."
They've been very interesting days, this last week. Moving from some-body-part goes "wack," and a feeling of complete soul-shredding, to something going "wack" and a reaction of "Oh. Well."
Is that what they mean by "relapsing/remitting"?
Plunging into darkness, then returning to the light, even "June Gloom" light, such as it is?
But before I contemplate that, after talking about having energy this morning... it's gone. I have to drive all the way to multiple doctors, and I'm already tired. Although Samuel Pepys, I'm sure, didn't say it for the reasons I do... but, in order to have enough energy to do all that driving and all that doctor's-office-ing...
As Pepys said it best, "And so to bed."
For a little while. To facilitate "And so to Santa Monica." Which doesn't have nearly as much poetry, but it does have its advantages. (That being where today's first doctor visit occurs.)
Well, we take what we can get. Even a little light, in the darkness, is very, very nice.
Wednesday, June 5, 2013
A new question; treatments; think
An interesting question has arisen before me...
Went to my MD and physical therapist, this week. Both tested my legs, and found precisely the same thing... my legs have gotten weaker. One of them, much weaker.
Now, the physical therapist said that it looks to her (MSer, but not MD) like I'm having an "exacerbation," she said that people with Primary Progressive M.S. (like me) can have them, and maybe I want to have a three-day-long steroid treatment.
Well, inasmuch as steroids were one of the things that cost us my father-in-law's health and (eventually) life, and my doctor had mega-steroid treatment because he had had a horrible "attack," and he's quite sure that it has taken years off his life, I'm thinking... no. I'm not going to do the mega-steroid treatment.
"I know people like you don't like the Western treatments..." she says.
I don't say as much in response, but I think: No, people like me don't want to die for stupid reasons. Die we all must, but as a Ranger said in the world of Babylon 5, "We live for the One, we die for the One, but we don't die stupid."
But here's the question... All through my life, something horrible has created something wonderful. Something that never would have happened... never could have happened... came to pass because something truly awful (experience-wise) paved the way for the wonderfulness. Being washed out of my pre-med delusion paved the way for my music degree, which in its own time paved the way for many other things. Getting laid off of a couple of jobs (years apart, completely different employers) made the getting of two of my music degrees possible. Breaking up with someone whom I thought was the love of my life paved the way for me to connect with someone who actually is the love of my life.
Now, I'm in a seemingly inescapable loop of "I have to sleep now now NOW" during the day, my leg strength seems to be evaporating (although I do have physical-therapy exercises, which I'll go do as soon as I finish this, presuming I stay awake long enough), I'm wandering through a fog of vaguely-unhappy-tummy-all-the-time (Don't eat? Feel not so good. Just ate? Feel not so good.) plus the elimination systems that Don't Want To Play Along Nicely, which have their own unwelcome "issues" that trust me, you do not want details about. So, in many respects, it's a life of "suckitude."
And yet, the pattern is... the bad creates the good. The good can only come to pass because the bad has paved the way.
Interesting metaphor, because roads are paved, and roads other than freeways don't tend to be surrounded by walls, without which I pretty much can't even air-quotes "walk."
So, I'm definitely seeing the bad... I wonder what good it is creating?
Well, as Aragorn often said in The Lord of the Rings, "Who can say?"
But between you and me... I'm ready for it. Boy, am I ready for it.
The Science of Mind people often say "Thoughts become things."
Clearly then, as Steve Jobs was like to say...
It's time to think different.
Went to my MD and physical therapist, this week. Both tested my legs, and found precisely the same thing... my legs have gotten weaker. One of them, much weaker.
Now, the physical therapist said that it looks to her (MSer, but not MD) like I'm having an "exacerbation," she said that people with Primary Progressive M.S. (like me) can have them, and maybe I want to have a three-day-long steroid treatment.
Well, inasmuch as steroids were one of the things that cost us my father-in-law's health and (eventually) life, and my doctor had mega-steroid treatment because he had had a horrible "attack," and he's quite sure that it has taken years off his life, I'm thinking... no. I'm not going to do the mega-steroid treatment.
"I know people like you don't like the Western treatments..." she says.
I don't say as much in response, but I think: No, people like me don't want to die for stupid reasons. Die we all must, but as a Ranger said in the world of Babylon 5, "We live for the One, we die for the One, but we don't die stupid."
But here's the question... All through my life, something horrible has created something wonderful. Something that never would have happened... never could have happened... came to pass because something truly awful (experience-wise) paved the way for the wonderfulness. Being washed out of my pre-med delusion paved the way for my music degree, which in its own time paved the way for many other things. Getting laid off of a couple of jobs (years apart, completely different employers) made the getting of two of my music degrees possible. Breaking up with someone whom I thought was the love of my life paved the way for me to connect with someone who actually is the love of my life.
Now, I'm in a seemingly inescapable loop of "I have to sleep now now NOW" during the day, my leg strength seems to be evaporating (although I do have physical-therapy exercises, which I'll go do as soon as I finish this, presuming I stay awake long enough), I'm wandering through a fog of vaguely-unhappy-tummy-all-the-time (Don't eat? Feel not so good. Just ate? Feel not so good.) plus the elimination systems that Don't Want To Play Along Nicely, which have their own unwelcome "issues" that trust me, you do not want details about. So, in many respects, it's a life of "suckitude."
And yet, the pattern is... the bad creates the good. The good can only come to pass because the bad has paved the way.
Interesting metaphor, because roads are paved, and roads other than freeways don't tend to be surrounded by walls, without which I pretty much can't even air-quotes "walk."
So, I'm definitely seeing the bad... I wonder what good it is creating?
Well, as Aragorn often said in The Lord of the Rings, "Who can say?"
But between you and me... I'm ready for it. Boy, am I ready for it.
The Science of Mind people often say "Thoughts become things."
Clearly then, as Steve Jobs was like to say...
It's time to think different.
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