Wednesday, December 31, 2014

Fun with barley

The adventures with B-san, or as I've been thinking of him lately, Alan, continue. ("Alan" from the character from The Amazing World of Gumball, the balloon in love with a cactus. The animated Alan has issues... so does mine.
I go into these details not because I'm into "all things urinary," but because my urologist told me that "Everyone with MS eventually goes down this road," so forewarned is forearmed.

So how is the whole thing "supposed" to work, in broad strokes? Kidneys extract what they turn into urine and pass it off to the bladder. When bladder figures out it has whatever amount in it that would be good to send along to the next adventure. bladder sends neural messages to the brain saying "Time to empty!" Brain tells bladder to let it fly (as it were), bladder sends the liquid on its way, and we're all set to start the cycle again. Besides, kinda from a spiritual perspective, urine exemplifies "stuff that I don't need any more," and sending stuff you don't need any more on its way is necessary so that you're ready simply to accept the arrival of next adventure.

For me, the challenges come out of bad wiring. Bladder does what it does but messages to brain are, from the brain's point of view, confusing or even incorrect. Brain tells bladder to do stuff but the messages don't get there and so it doesn't do what brain wants. We in the Cath Club have figured out a way to work around the "there's no way to get bladder to do what you want it to," but the messages sent to brain don't get less confusing.

Apparently, and although I haven't chatted with urologist yet about this, my Basic Doctor tells me that my bladder is spastic (just like so many of my other muscles) which means that it doesn't really expand fully and freely; the other day, I did a nice voluminous cath, lay down, felt Alan screaming at me, cathed again, and again got a nice voluminous cath. Now, if the New Year's Eve champagne bottles worked that way--I'm empty! No I'm not...I'm still full! Have more!--Moët and Chandon would have a very different way of looking at the holiday.

My current approach to the problem is to pay at least some attention to the clock... if I got awakened at 6AM with Alan begging to be emptied, and haven't had anything to drink before, during, or after said emptying, and it's only two hours later, I figure let's try just ignoring Alan's screams. Sure enough, in a few minutes, things cool down, and we're cool again. But that's precisely the way tried to go in the above example of big cath, Alan screams, big cath again, because my version of Alan goes spastic and crumples. I think.
Even as I type this, Alan is whining, ever and ever more insistently. The whole "catheterization" process goes way way WAY more easily when it's cooperative... when Alan welcomes the cath. My GP guy says that the whole plumbing system needs to relax, so that the "screaming" is only sensory not muscular, hence the "cooperative" thing.

And so to come full circle, while I was typing the above paragraph, Alan was most distinctly calling for attention, so I took an "aside" moment to visit the "necessarium" and do the Cath thing, and Alan cooperated and responded happily. Enough lube is important, if you're using coude´ catheters, angle matters too... but nothing trumps cooperation. Happy to play the game urethra, happy to play the game bladder, things go beautifully. And to find the funny in it all, after the initial "emptying," I poke around a bit with the catheter to find the fluid level, and I do, but that level keeps changing. Interior of the bladder isn't like a real balloon, its inner wall has bumpy bits (hold up your hand, flat, palm facing you, and looking at your fingers you get the idea of the "bumpy" of the inner bladder wall, which becomes more "interesting" to work with when the basic musculature is spazzy and thus creates places for fluid to collect and avoid the outlet provided by the catheter. The more things change, the more things change.

And a final note: My doc, who's both in the MS and the Cath Club, says that if you're using catheters like we do, you're going to get infected ("UTI" means "urinary tract infection"), so don't be surprised when it happens. But he also recommends, and because of what this is I can freely share it with you, barley tea. Or, as the Japanese call it, mugi (moo-gee (hard G)) cha.
Has nothing to do with camellia sinensis, the plant from which what we call "tea" comes, and therefore has no caffeine, and for folks like us this is a big plus, it is not at all diuretic. But my doc says it just cleans out the system, which is after all what the whole "elimination" system is all about. If you brew it from scratch yourself from only barley seeds, or if you use a tea bag (very easily found in Japanese markets), the flavor will be different... but it's not bad at all either way (I prefer the "from seeds" version), just be your own tea master and brew it as long as you think you should; the worst you toss it and try again, what with the cost of barley, isn't a big deal. Considering whatever else you may have to struggle with, this ain't bad, brewing barley.

And as they said on Babylon 5 in the episode "Learning Curve"... So ends the lesson.

Tuesday, December 30, 2014


Phone reports that weather service predicts rain, wind, and frost tonight--all three. For me who has become wicked cold sensitive (as opposed to the usual "heat sensitive" that MSers usually are, which of course I also am; I seem to be Schrödinger's MS Patient) this whole "wicked cold" thing is keeping me inside. At most, I wheel myself onto the veranda, smell the air, feel the temperature, and zoom back inside... Although there have been days when I open the back door, take a hit off the air, and wham! Back we go. NOW.

Five-Element acupuncturists call this the season of Water. How he speaks of the Element is positively poetic... Read it, it will definitely send you down an interesting road.

As I told my own 5-E acupuncturist on Monday, I got a very clear "buzz" from Nature, this season... what came at me was the season itself saying, "I've got more important things to do than worry about making things pretty for you." He loved it, and laughed loudly. A really nice smile. And he definitely knows Water people... I guess I was right.

I, of course, am a Fire person. For years, I've just felt squashed by winter. Not a time of heavy power composition... I always used to spend the summer writing music for six-months-later Christmas. but that is the Fire season, after all.

But, as the Five Element folks will tell you, each Element exists within each Element; there is Water within Fire, and Fire within Water. If you just sit in nature and just pay attention, you'll feel it. This year here in Pasadena the unseasonably hot (100-degree days) that hit during the Earth season definitely had a lot of Fire within it, but I could feel it reaching for Metal, even for Water, as the wind changed. Every day is different. Every day.

So, today, I seek the Fire within the Water, yes, but all in all, if you'll forgive me mixing metaphors, I'm dedicating today to just going to ground. My wife is heading off with her mother, K-Mom is going home January 1 of all  things, boy will that ever be fun, I'm here at home and I am going to do nothing beyond as Gumenick says, finding the "dark, quiet pool within ourselves where our essential self-identity resides."

A friend may come over; he may not. I might call a different friend to come over; I may not. And he might not be available anyway, but that's on him. I might make some phone calls; various doctor's offices have called with questions, I need to answer them, but those hardly are places where my "essential self-identity lies."

My "to do" list today is very humble. I will feed myself properly. I will take my herbs. I will deal with the rigors of the Cath Club (next on my list this morning). Yeah there's business to do, but today, by priority is to do only that which strengthens me. As Gumenick writes,

A time for internal work.

Friday, December 26, 2014


DAMN, I am cold. Imagine being cold, you throw a blanket over yourself. It doesn't work--you're still cold. Toss on another one. You're still cold. Repeat... both "toss on another one" and "you're still  cold."

I'm not really comfortable unless the heater is knocking on high 70's, maybe 80.

At which point, the world gets too hot.

I can't win.

I am, though, beginning to make new discoveries... I almost never feel "hungry," but I think I'm starting to get a grip on "empty...too empty."

I'm starting to work on "eat something during the day." And to do it LONG before I get to the "oh dear, I think being empty for too long is creating problems..."

I was going to lapse philosophical, maybe even quote Ram Dass...

And then... the coughing started.

Me and coughing can be kinda violent. I start hacking violently, not barfy-nasty kinda violent but definitely violent... the keyboard I leave on my lap when I'm doing things such as this flies away, because my entire body spazzes and my knees fly up (hence, knocking things out of my lap), my eyes tear up and my nose runs, and I cough and cough and cough and cough and cough and... this goes on for minutes.


Eventually, the coughing stops (it has so far, thank God), but now I can't speak. Someone asks whether I need any help, and all I can do is shake my head -- if the coughing has stopped enough -- and a few minutes later, everything calms down. Except I still can't speak.

What's setting this off? Tiny particulate matter... a crumb, a chip of pepper. A slightly overly-zingy bit of juice.

Today, it was pizza that set me off. Amy's, I believe, they do flavorful non-dairy stuff. The crust is delightfully crisp. Except for the "particulate matter makes me cough" part.

This is another reason I shy away from eating... if it doesn't tweak my tummy, it karks out my throat and I spend way way too long coughing and coughing and...

Let's not even get into the "light lung mucus" thing. Which, fortunately, happens infrequently but is not as hideous. Unless I'm lying down when it hits, in which case I can't move it and it's more and more coughing. But at least, when I can clear it, it clears reasonably quickly. But still my legs go spazzy, not always as badly.

But the "eat and cough" experience is one of the thing that keep me away from eating. If the questionable tummy wasn't enough... (One of the reasons I so rarely ask to be taken out for dinner, nowadays. Simply being in a moving car can set off the "unhappy tummy" problem.)

Great. I finally decide to eat something, and it sends me into coughing fits because of a flake of pepper.

And as I'm typing, there goes the coughing again...
He adds, several minutes later.

Everything has a price, it seems...


Thursday, December 25, 2014


I had a visit with some very, very wonderfully dear friends yesterday; A couple; I played for their wedding, and as for Him. I've known since 1985.

I am sorry to report that She has some sort of totally whack brain tumor whose specifics I can't recount, but trust me, it's totally whack.

She hasn't been given A Date for such things, but she has been told that she may not make it for longer than a few weeks. Or months. Or... well, they don't know. Being here on this plane shuttling around in these mortal shells, eventually we all realize that said mortal shell is only good for "so long" before it just gives out, but being told you may have X or Y or Z specific time here... well, that's hardly a preferred technique for raising one's spirit. Especially when both He and She are dealing with a pair of kids, 3 and 5. With whom Every One Of Them had to deal with the Farewell of their dog. And how, being dead, is She supposed to help the kids deal with Mom's passing? Yeah, that's a spirit lifter.

Her experience with her Neurologicals is quite similar to mine... Details vary, as they do for all of us MSers, many of the basics or "big gestures" are the same, but the details are completely unique to each of us sufferers. Especially the "suffering" bits.

Among many interesting things is that She, quite a stellar writer, has had her creative process completely bollixed up by her neurological experience. Like me, a lot of "creative time" was trumped by "I have to sleep  now. NOW NOW NOW." She, like me, goes through what I've been calling "hit the wall." When I hit the wall, I'm done. I'm done, with whatever it might be, and I really really need to go to bed and probably sleep NOW NOW NOW.

But most fascinating was that Her and my internal processes are completely unique. Nowadays, I seem to lapse into fury with not much/no warning... drop something on the ground, which happens a lot, and I start foaming and swearing... not at anyone (I do swear at the Complaining Cat), I'm just venting. Her experience is completely different; she goes to intense places, which are very specific to Her, but she doesn't foam. Many of our Issues seem at some point to boil down to "Give a shit, but don't give a shit," how Jesse Sheldon described dealing with the Theater Tech world, and the myriad WTFs that occur in such places.

I found myself answering her questions about "How do you deal with XYZ?" simply by saying things like "Worrying about the afterlife is above my pay grade." Besides, I got enough to worry about as it is... wanted to say (but thought it polite not to) "Don't you?"

But also at least a little funny is... She makes use of Medical Marijuana AS medicine, and finds it very helpful for Her specific issues. It makes things better. It's a big help. Everyone I know who uses Medical Marijuana as medicine finds it to be quite excellent medicine, and really really helpful. It is truly wonderful, as opposed to things like Tysabri which has been known to turn your brain to mush and kill you. Fails the Hippocratic "First, do no harm" command.

For both of us, the bottom line is the same: The creating/creative process has been completely run off the rails, and we can't create the way we always have; but She and I are Creators, we Create. So: Create something. No requirements for size and complexity, just create something. It's perfectly OK if it's crappy...  Tom Hanks said (speaking of his preparation for the Forrest Gump role) that "You have to suck before you can get good.

So, it's clear what mission lies ahead of me...

Just... suck. But merely doing something is success! So, suck... and smile.

Friday, December 19, 2014

Trying to be helpful

We're having quite the "medical time" with our 18-year-old cat. Yes, 18! Just stroking her back, she's feeling much more frail than she used to, but she's as sweet as she ever was. Hard choices, whether to go to treatment X or treatment Y... with an 18-year-old cat, one is very sensitive to "the cure is worse than the disease" choices.

Which particular principle (cure worse than the disease) has kept me off the standard MS treatments, e.g. Tysabri, which in its day was responsible for quite a lot of "cure worse than the disease" noises. But as Alton Brown has been known to say, "That's another show."

But taking the Cat Journey definitely brings to the fore the simple truth that we all process "difficult to deal with" issues very, very differently. And said difficult-to-deal-with issues are differently difficult, and each of us offering up something we expect will be "helpful" often isn't.

About all we have is what Ram Dass said, quoting his guru: Love God, and tell the truth.

Some of my "helpful" offerings (which often aren't) I think are well-rehearsed delusions... "Well, easy answer, smooth but definitely easy-to-give answer" is first on the list of "not helpful."

I think it's quite safe to generalize and say "Delusions aren't helpful."

I hope that isn't a delusion... I'm pretty sure it isn't...

Trying to be helpful isn't always helpful... sometimes it just gets in the way.

Thursday, December 18, 2014

The fun never ends

So, how're things going...

I have been very kindly ministered to by a friend... not an MSer but like all of us, he has Issues, and we minister to each other for our various Issues.

He has been wonderfully gentle with not letting me get away with stuff, very gentle in telling me that I need to come clean with myself... Very much, a gentle example of "tell the truth with love."

My wife is, even as I type this, taking the 18-year-old (yes, 18!) cat to the vet. We don't think this was going to be The Last Journey, but poor little cat has definitely run the race and soon it's going to be time to make the transition, whether she makes it with our help or not. We don't THINK it's time... yet...but we will see.

God, this has got to be awful for my poor wife... Caring for withering husband, and now additionally caring for a withering Cat Child who has been with us through so much.

And my job, through all this, is to pay attention, love Karen, and keep my f**king ego out of the way. I'm not always good enough to catch myself as, or even better, before, it happens... But that's my work.

Speaking of work, it's time to have a little more food, some medicinal herbs (nice flavor this time, this formula even has cardamom in it, among other things it's supposed to be warming, something I definitely need nowadays) and then some Medical Adventures.

The fun never ends.

Thursday, December 11, 2014

Things do indeed change

Here in Pasadena, it's definitely comin' on Winter, as they say in Montana. (They also say that there are four seasons in Montana: Conin' on Winter, Winter, Pretty much still Winter, and Road Construction.)

Thinking a lot, perhaps more than I should, about life in New Haven and at Yale and its environs... But as a very wise man reminds us, there are many paths to enlightenment, but "nostalgia" isn't one of them.

My herbalist has encouraged me to try snorting small doses of my herbs, 1980's-cocaine-style. It's quite odd (there's cardamom in this formula, who snorts cardamom?) but it's gentle, and it works. Dunno exactly what it does, but it's doing something beneficial.

He also told me to go full-court-press on B vitamins. Megadosing. But he did come up with a superlative research paper about what to do and why. And, a relief, at least we know what B vitamins do. This particular paper is gloriously free of "is thought to" bet-hedging.

I had some matcha this morning on the back veranda... I can take the outside world briefly and in controlled doses. But at least from the veranda I can watch and maybe even enjoy, the promised rain while staying dry. It was quite odd toddling around the high school (former workplace) in a powered wheelchair in wet weather... My knees and shins got wet, because they were basically the "leading edge" of my forward motion. Top of my head of course yes, but nothing like direction-of-motion shins catching the rain. Sort of a Mythbusters experiment gone very, very oddly.

Very simple activities, today. The usual "bathroom polka," additional details of which you do not want, take my herbs in various methods, maybe even make some pickles. Maybe send some messages from the computer, pay some bills (or in this particular case, some more bills, such as the supplies I need to keep myself happy in the Cath Club). Eat. Yes, that needs to be committed to as a "mandatory to do" just like my morning thyroid pill and daily catheterization... because it takes special circumstances likely that to happen in any way... "Go out to eat" I do very very rarely, because getting dressed enough and bathroom-adventure'ed enough, plus being able to simply withstand leaving the house, is a Very. VERY. Big. Deal.

Speaking of which, it's time to have some herbs and try to eat something. The difficulty of bringing myself to do which is very foreign to a gastronaut such as mysel...

But, things change. They do indeed change.

Monday, December 8, 2014

Take what you can get

Time to remind myself about the whole "gifts of MS" thing.

Here's a gift: Simply noticing.

Nowadays, I notice my wife a lot more. She's really amazing, and it is definitely amazing to see exactly how wonderful.

Well, she's really wonderful. The source of the most amazing surprises... among many many many things, her work as a voice actor is delightful. Sometimes terrifying. A typical role in a typical (for her) game:

But her work.... she... is definitely wonderful. In everything she does.

And what's one of the most important things to learn about living with MS? About living with... life?

Take what you can get.

Sunday, December 7th, one of my compositions was performed by St. Olaf as a part of their annual Christmas festival, which has been going on since 1912. Their performers delivered a beautiful rendition of my composition Hodie--I don't have a recording yet of that performance, but I'll share it when I get it.

But it was good. Very good. St. Olaf, in the world of music... a friend of mine in the College Music Industry said that "'Good enough' for St. Olaf is 'holy crap!' for most people." It is a fine, fine place indeed. Go to any church music library, and you'll see the name "St. Olaf" peeping out at you from all sorts of places. Pictured below: Yeah, that's what St. Olaf's Christmas music festival looks like. Probably what the group that performed Hodie looked like.

Take what you can get!