Saturday, November 30, 2013

Latest prescription

My doctor's latest prescription included one very specific word: "Laugh."

So, I thought I'd share one with you! Here's what I suggest that you do: Read the text below, in your best "announcerly" voice. And I promise you, I am all but 100% certain about this, that you (as well as anyone who hears you speaking them) will never, never, hear these words again. For any reason. Anywhere. Ever.

And here they are:
Ask your doctor if sheep placenta is right for you.

Yes, that's a real product. I photographed this on the shelf of a recent Chinese pharmacy. Some places have human placenta on the shelf, even. The most powerful of all Yin tonics, I'm told, human placenta is. Chinese herbalists who use it don't generally tout it very loudly (especially to Westerners, even if they'll quietly label it "placenta hominid") but those who use it, do use it.

But this is the huge difference between the Eastern and Western pharmaceutical approach: The West provides drugs for people, in large not-particularly-differentiated masses. (They won't give MS drugs to "anyone," but they do want to give them to "anyone with MS.") The East concocts formulas for you. Today. Here and now. And be sure to take it now, because in a month, maybe even in a couple of weeks, it won't be appropriate any more, because you won't be the same.

But what about the double-blind controlled study? Well, if you're seeing the right guy, he's living in a world of study, they've got hundreds or thousands of years under their belts in history behind these formulas, where he sees how certain things help people experiencing certain things, and can extrapolate, based on his experience with you, to how those things can help you.

If you're not Yin deficient, there's no point giving you a Yin booster. Pretty straightforward, ain't it? 'Course, that's a qualitative, not quantitative observation, but that's definitely another story for another day.

If you're getting benefit from some drug or other, good! That's the whole point. If you're getting no benefit, why bother? That's not the point, is it?

I used to be on all sorts of "help you pee" pills. They made me nasty loopy, nasty "dizzy" as the sticker on the bottle warned. Caused nothing to full-on malfunction, fortunately, but they definitely caused problems.

Well, turns out, if all you wanted me to do was create lots of urine, how about drinking lots of water, or better yet, this high-grade wild pu-erh tea? Reading the amount that I extract from my bladder with a self-catheter, and how often I have to do it, pu-erh is really good at this. And doesn't make me dizzy, or anything, except happy. Because I like it. And its earthiness is perfect for chilly winter days!

And oh yeah, bowel problems? Things don't like to ... move? Pu-erh is hardly a "man the pumps!" explosive emptier like manganese citrate or the sort of things they like to give you to prep for being 'scoped, but it encourages the system to, well, work. Work the way it's supposed to work. Easily, and pleasantly. And there's definitely nothing wrong with that!

So, go find some good pu-erh (easily available on the web, and if you're lucky enough to find a human at a tea emporium that can help you with it, that's even better), brew it, enjoy it! And laugh. Because c'mon, using tea as both a reassuring beverage and a healthy tonic? Putting the poo in pu-erh?

Ask your doctor if laughing is right for you.

I'm gonna guess that... it is.

And you gotta laugh at that!

Friday, November 29, 2013

Web, music, and overflow

Entering new phases, which are old phases.

And I'm going back to the "sleep all day" way of doing things. So nice to sit at the computer and do some music stuff, even if it's just tidying up some scores and shipping them off for Christmas postlude, maybe. Time to jigger my web site's front page (check it out later today, perhaps I may even have completed the adjustment by then). I had even started work on a Magnificat, maybe I'll get some of that done too? We'll see.

My regular see-him-every-week MD significantly pared down my pharmaceutical load, especially in the "get the bladder emptying" department. "They lover prescribing this stuff," he said, "But for people like you, they just can't help you, there's no point to keep trying." If I want to get stuff moving through the system, all I need to do is drink more tea, which I enjoy anyway.

Urologist talked about the bladder "overflowing"--of course it doesn't actually do that, but for MSers, often what happens is when the bladder gets full "enough," wherever "enough" may be, it starts trying to leak or desperately squirt out at least something. But not to empty, that stuff stays there until you cath yourself.

I can't help but remember Sawajima Mamimi from the anime FLCL, who in the first episode was confronted by a giant something-or-other and kept crying "I'm going to overflow!"
Nonetheless, in the time/energy/whatever currently available to me now, I'm going to jump back to something musical, probably web-site tweaking, and a thank-you note sent via Facebook of all things. Then more music? Who knows...

By then, I may be about to overflow.

Tuesday, November 26, 2013


This is just plain strange.

I'm not "confined to a" wheelchair, but if I want to move further than, say, six inches (not counting "hit the floor" as "moving), I'm gonna use one.

There are things I've been doing nearly all of my life, including play the organ, that I just can't do any more. "Things that aren't working so good" increase in number, and vary, every day.

Working life? Well, that's over. Lots of stories behind that, but the bottom line is... over.

And let's not talk about the various organ systems that are working... "differently" nowadays. Hourly.

And yet, everything has been to put me precisely where I need to be, here and now. There were some emotional/mental/spiritual places that I have needed to go for a long time, desperately needed to go, and what's pushed me to those places?

My current condition.

There are a few things about my life that have never been better, because the place I'm in now took me to the very places I needed most to go.

That's weird. Wonderful. But... I suppose one of the best words is...


(Hell of a lot more encouraging to my fellow MSers than the litany of symptoms and failed medical treatments, I'd imagine. But even if you aren't an MSer, where you need the most to be, the most desperately need to be, is...

Here, and now.

Surprising, no?

Sunday, November 24, 2013

Today's tasks; side effects (?)

An interesting task today. Two, really.

Number 1 is the easy one. Drink a @#$#$-load of pu-erh tea. It often helps the bowels move, and lots of the "help your bowels move" websites sing the praises of drinking a @#$#@-load of water. Besides, the bladder needs practice. I suppose.

And the BIG project: Not look at things, where ever they may reach out towards me (as it were), and not simply say "That [whatever] pisses me off" or "Is a challenge" or "Causes me problems" or whatever. WHATEVER.

Instead, I need to speak the truth: How do I feel?

Not "what does it MAKE me feel," no! Just to simply speak the truth. There "it" is, whatever "it" may be. And then we take "it" off the table. The only question, the ONLY question, is...

How do I feel?

Truth has power, simply by being true. Time to go WITH the flow, not delude myself into thinking I'm playing nicely with reality.

To speak the truth with love.

Because one message I am definitely getting from my... well, whatever body parts are not working as I wish they would, it's very clear what they want.


Does this mean I need to "Love my multiple sclerosis?"


Just to love.

Yeah, I may need [whatever] medical treatments for [whatever] reason, and as the Beatles sang, "All you need is love" isn't quite ... directed precisely enough.

But whatever parts of me there are that are in need... Love is what they need.

So, today's tasks: Keep drinking pu-erh, attend my various elimination systems as best I can, and... speak the truth with love.

I'm thinking... wash your hands, keep the tea water hot, and speak the truth with love, and...

Side effect? WHAT side effects? Besides, you know, truth?

And... Love?

Saturday, November 23, 2013

Metal; releasing

Except for my thyroid pills (which predate the MS crash-and-burn that got me into the hospital, twice), every single pill bottle comes with a "May cause dizziness" sticker. And they all definitely do. Oh BOY do they. I don't know whether to blame the flamingly crappy typing on them, The Disease, age, temperature, or this Apple keyboard which I've always disliked… so I'm hoping to get this out, corrections and all, while I still have energy to sit at the computer. Looks like it could go either way, right now…

Here in Los Angeles, it is finally, definitely, November. And here's the spooky thing… Every time I even breathe the air outside, I go into major Yale flashback. I smell Yale. I feel Yale. I really, really, feel the connection not to Yale that is today, but to my Yale, the Yale that was there in the 80's.

The classical five-element acupuncturists tell us that autumn is the season of Metal; the element that grants the power to let go, to grieve. Letting go is one of the many things that Metal is all about.

And one thing I am noticing of myself, especially at this time of year.. Not only do I need to let go of more things, the things that I need to let go of, I suck at letting go of.

And I feel that I'm not living in nostalgia for the Yale That Has Gone, but I'm full-on attached to it.

And the Metal of the season, especially the Connecticut-ian weather, the very Yale-esque weather, is telling me that I have to let go of it.

I don't know how, yet. And I know that I must.

"Releasing" properly always makes the most amazing things work ever so much better. And now, I have to release this.

I also seem to need to release being able to type without full-on sucking at it, but the Yale that has gone… though the gifts of Yale constantly help me, there are parts of my experience there that I Just. MUST. Release it.

Typing has now entered "no fun at all" and I'm going to finish and go back to bed. But … time to really get into the spirit of Metal, and let go.

Especially because we're approaching Metal becoming Water, and one thing I can definitely feel from the Metal: even IT knows that it's time to let go and say goodbye. Because even an Element needs to know when its time has come.

Metal; mind; improvement

Well, that's quite the combination.

A bit of bladder-related education. I'm currently, and probably will be from now on, in the Cath Club, for proper and 100% controllable bladder emptying. 

But here's the thing: Bladders like mine can, according to my urologist, "overflow." Not literally, of course (oh boy, that'd be "exciting," wouldn't it?) but when the bladder hits a certain capacity, whatever that may be--and unique to each bladder, of course--it'll just start emptying itself. Not completely, just "some," whatever that may be. It might explode with excitement. It might just dribble out. But that's the "overflow," overflowing, but not emptying. At all. So you go for the cath, bring the bladder below the threshold or better yet, down to functionally empty, and poof! Leaks, gone! Exploding, gone! And all that stuff will stay gone, as long as bladder is empty enough to keep it below said magic number. 

And of course, like all things MS, how often you do this is up to you, and your bladder. Every four hours? Every three? Every six? How much [fill in the blank] are you drinking and how diuretic is it? All sorts of complicating factors, but just be sensitive, and when the "Oops! Gotta go THIS SECOND" flags go up, give it what it wants, and reach for the catheter.

Because the Thrall of the Antichrist Insurance Company didn't think I needed the catheters that the MD under whose care I fall and, unlike them, who has watched me void, knows that I need a certain type and prescribed them, of the type and quantity that he as a person who KNOWS ME regarded as important, I'm still waiting for them to cough them up. The Catheterists said it'll be here Tuesday… I gotta do a lot of catheter washing in the meantime, something my urologist says I can do but the catheter manufacturer says not to do. Having tried it, I can get three, maybe four uses out of one, but once these are gone, they're gone, and wheee! I'll weeeeeeeee…….. 

But here's the spiritual thing. I've been doing a lot of intense spiritual housecleaning. Getting out of my soul things that just don't belong there any more... 

Which is what the large intestine does for us all. The classical five-element acupuncturists call this official "the Drainer of the Dregs," which is pretty much what the physical large intestine does too.

And not to put too fine a point on it, I needed to take a pretty severe spiritual "dump," and get some things out of my mind, heart, and spirit.

And here's the weird thing… I suppose not really "weird," but yeah, weird…

I had to be manually deimpacted (yuck) multiple times in the hospital, have had to do it for myself (double yuck), and in the hospital had to have more than a few enemas (yuck again) to get anything out. Nowadays, yes they do have me on stool softeners and that sort of stuff, to obviate the impaction, but since I started really cleaning out my mind/spirit and letting go of things in the spirit of the season of Metal… I haven't returned to "flawless and effortless in every way," but at least I have been able to empty myself without requiring the least assistance. Doesn't always happen at the same time of day, and my GI guy told me that anything between twice a day and once every two days qualifies as "normal," but going at all, without intervention, has been… wonderful. As a floor-mate of mine said in college, "Sex is great, but nothing beats a really good s--t," and dang, was he right.

The Science of Mind church folks say "As a man thinks, so is he." Apparently, as I've just discovered: As a man thinks, so poos he.

You won't find that in the writings of Earnest Holmes, at least I don't expect you will, but at least for me… it works. 

So, change the way you think, and everything will change. Sometimes in the most surprising, and welcome, ways.

Next on the list: forgive my body from "going south" as only MS, and age, and life, can take it. Today I'm able to stand up long enough to turn my computer on, and even with my hands not doing so well with fine motor control, my hands are doing better.

Improvement is... improvement. With no side effects beyond...


I'll take it.

Monday, November 18, 2013

Thank God, even for...

Some things you don't appreciate until you don't have them.

Or sometimes, until you lose them.

Corrie Ten Boom told a story of her sister in the concentration camps saying "Thank God, even for fleas." The fleas scared the guards away, so they actually gave the prisoners some breathing room.

When one's elimination systems don't work right, and one simply can't get rid of what's no longer needed... that's not good. At all.

But when you haven't been able to go for days, and you finally do...

Thank God. Even for poo.

There's no other way to say it.

But today, I am definitely thankful for what has finally gone on its way.

Some things you don't appreciate until you lose them.

But today... Definitely, I am thankful. As well as a few pounds lighter. But foremost...

I'm thankful.

Friday, November 15, 2013


This will easily be my darkest blogging day.

My last conversation with the internist basically recapitulated the words of Jon Stewart: "I got nothing." Or in their case, WE got nothing.

There's stuff we can give you to help your bladder, but they'll only do so much  good if the "wiring" causes the bladder to misfire.

There's stuff we can give you for your bowels, but they'll only do so much good if the wiring causes the bowels to mis-, or in my case non-fire.

I am totally not an invalid... but today, I feel like one.

There will be a gift hidden in this. One gift has been gaining new understanding of my wife and our relationship, that I never would have been gifted had I not been in this immediate condition. I know that I was gifted by being booted out of my former employer, because painful as it was to say goodbye that way, it was definitely time for me to leave. (And from what little I hear of the place, oh GOD was it time for me to leave before "now" happened.) But the gift... I don't see it.


It is clearly time for me to change into something different. What, how, I don't know.


But right now... spirituality and denial in all its forms aside, life pretty much fucking sucks right now.

There are ways in which it doesn't. Those need to be as true as the suckage is. They are. They are. But they're not connecting to my heart, the way the medical suckage is tonight.

Oh, I'll definitely be here tomorrow, don't worry about that! There are some conversations with the "discharge planner" being prepared, and those'll definitely take us somewhere different. Where, I don't know.


But I would sure love to feel less an invalid. Which I don't.


Thursday, November 14, 2013

Happy ending........?

Still in the hospital. Where "this MS thing is different every day" finds all sorts of new demonstrations...

I've been using a "condom catheter" for several days, to get around my bladder's non-cooperation. It's also called a "Texas catheter"... nobody knows why, but many of them say it's a very fitting name. There was a malfunction one day that caused it to become a plug rather than a hose, but thankfully that has been remedied.

One of the neuro's here got me going with IVIG, which I've been tolerating extremely well and that may actually be helping... simply the act of "standing up" is significantly easier than it was before I started.

He's also talking me into going for Ampyra (why the manufacturer's want it pronounced "am-peer-a" than "am-pie-rah," I have no idea) once I'm outta here. The hospital pharmacy doesn't stock it (no surprise there), but he says it'll be easy once I get outta here. And it's oral!

It's not a "disease-modifying drug," it's actually supposed to fix specific things. To use the electrical-system metaphor, if the a nerve's insulation is bad, this will try to repair it; if the core "wire" is bad, that, it can't fix.

And especially reassuring to me, its description doesn't involve "is thought to." I hate that "standard verbiage." HATE it. "So, you're telling me that you actually don't know what it does?"

I told the doc that I live in fear of discovering the new turn-your-brain-to-jello Tysabri, that everyone I know on a "standard MS drug" spends six days wracked by the way it makes them feel but then gets one good day, after which the cycle repeats... infinitely... and the MS never gets better. He says that doesn't happen with Ampyra, and a toxicologist I know who works for a Big Pharma said that he would take it, so I think it'll be OK. (Toxicologist, by the way, described what he did as being a pharmacist who only saw side effects.)

And the very first TV program I saw this morning was the greatest cartoon ever made: What's Opera, Doc? I'm hoping that this augurs well for the rest of the day...

Except the final words are, of course, "What did you expect from an opera, a happy ending?"

Well, I certainly expect one....

Monday, November 11, 2013

Points of need

Well,  here i am in the hospital again. Another meltdown.

I'm currently getting  IVIG. On day two of five, then to get another infusion next month. Web tells me that if it's going to do anything, it'll take a month before we see any cyanges.

Neuro guy also wants me to think about Ampyra....  again, according to the web, it looks like it works, or it doesn't. Makes you sick, or doesn't. Gives you seizures, or doesn't.

Now, I understand that  drugs have side effects for the people they effect on the side. And that there's no  way of knowing whether you're gonna be one of the effected unless you try it.

But none of this MS-drug-crap makes me want to try ANY of them. C'mon people, get a clue! If I went to a restaurant and someone said "You're gonna love this stuff! 'Course, it might make you go blind," I don't think I'd eat there. Or would anyone else... Chef friend of mine said, "We have two jobs: Make good food, and make money. If we don't make good enough food, we won't make any money. If we don't make enough money, we won't be able to make good food."

Now, how would the "MS industry" do if THAT is how they approached treating this disease?

MS is so indivisualistic.... what helps YOU helps YOU. Might it help someone else? Maybe, but we don't know. Might it hurt someone else? Maybe, but we don't know.

In the meantime, the way my bladder and bowels are [massive air quotes] "functioning" is.... not to design specs, let's say. GI Guys are trying various things, including erythromycin. Bladder Guys are trying various things. At least their drug choices aren't rife with  "makes your liver fulminate" side effects.

Yes, "I can't change things" is a very Zen thought, one's attachments are immediately revealed. But here, I'm attached to being able to pee on MY terms. Being able to poop on MY terms. When those are no longer "attach-able," even functionally.... it's hard. DAMNED hard.

And one more thing I'm having a VERY hard time dealing with.... it's the health-care people who aren't willing to accept MY experiences. Physical therapy here, as it was administered to me, once we weren't doing things like chair-to-bed or bed-to-chair transfers, was ANTI-helpful. They were completely unwilling to accept my own need to understand what I was supposed to do before I attempted it; until I knew where my feet were supposed to go and where my hands were supposed to go and I felt safe trying it, I couldn't even START doing it. They just wanted me to follow the directions. Well, dude, if you can't explain it well enough for me to understand the operation, that's on YOU, not on me. And some of the PT sessions didn't help me, they robbed me. OK, so I practice standing for X minutes. Well, that was too long, because now I can't stand any more. For the rest of the day. Sometimes, for the rest of the week.

God damn it, I can tell IMMEDIATELY when something helps or harms me. If something is a proper fit. When I started kyudo, they showed me the Federation style. Bad fit. BAD fit. I moved to muyoshingetsu ryu, and INSTANTLY it was a correct fit. Iyengar yoga, I instantly knew was good for me. And felt GREAT after even the shortest session! Would I do more of it if I could figure out how or where, and didn't need to worry about leaving puddles? Frak yeah! But THOSE PT exercises? Nope. Not a chance.

PT is, I think, geared to help people with muscular problems. Not neurological ones. Nerves have different problems, they need to be retrained into adaptability using different techniques. Muscles, you can build. Make 'em bigger. That's how they're designed. Nerves don't work that way, Get the nerve to fire repeatedly, it ain't gonna bulk up.

You need to meet people at their point of need. Not tell them what they need the way you want them  to need it. The PT people don't have a point of need. I do. Yes, I need to be willing to meet them, but I'm willing to meet them only if they're willing to meet me where I am.

So, I'm presuming I'll be going home by the end of the week. I have a list: how am I gonna deal with bowels, how am I gonna deal with bladder, in ways that won't create a mess that my wife  is gonna have to clean up, unless we hire some sort of hang-out chums whose job it is to clean me up.

And dang  it, I want to write music again. Successfully. Without having to bail out or stain the carpet.

One of our  fellow MSers refers to "it" as "the MonSter," Oh boy, do I see where they're coming from.

Friday, November 8, 2013

"Deserve"; fairness

I'm thinking, my current insurance company seems to have done well enough with the hospital, but to someone in the Cath Club? Not so good...

So my urologist--my urologist!--ordered some catheters for me. Which haven't shown up yet because of course, the insurer has to be positive that I need it. Yeah, the person who watched me void and who helped me to learn how to use the catheter saying that I "need" it? Not good enough, someone in the Insurance Company has to decide that I do, in fact, need it.

I tried calling the cath provider. They say they can't do anything, it's all in the insurer's hands. Can you call and see if we can help this along? Well, I suppose we could, they say, but it wouldn't make any difference. They don't LISTEN once they get into this state, we can tell them anything but they won't care. Like they're giving me a bladder infection, because they won't give me fresh caths and making me reuse my current caths which the manufacturer specifically tells you not to do? Yeah, they don't care about that.

I told the cath company there's a special place in Hell waiting for them... a place where they need to cath, but aren't allowed to do so, because They, whoever They are, don't think it's necessary! Even if the people in the pit are begging to be allowed to do so... nope, we'll decide when they "need" it.

Special place in hell, indeed. Which, I gotta say, I'm quite happy for them to spend a lot of time there. A  LOT of time there. I mean, I do try to stay away from the "deserve" word, being as I know I deserve more than I get, but this is different. This is cruelty, what they're doing. So yes, dammit, they deserve it. They do indeed.

And in context, Medical Marijuana California has places you can call, or just use the web, and you'll get stuff delivered to your door. Often, for free! Using, for example, Goddess Delivers. A wonderful organization, with thoroughly wonderful people, and as far as I know, truly excellent products. And this cannabis stuff can make the pain, whatever pain there may be at the moment, simply go away.

I can get high-grade cannabis products delivered to my door with just a phone call. But I can't get my urinary catheters approved, I may not need them, so the saying goes.

Somehow, I just don't think this is fair.

Tuesday, November 5, 2013

New prescription

Some good and bad to share.

Oh, let's start with "bad" for the moment. I'm all but out of catheters, the sine-qua-non of "life in the Cath Club." I called the people the urologist's office said were "The" cath people. Well, I asked for some, but it's taking a long time because y'know, the insurance company, they have to decide whether I "really need" them, or something like that. I told the cath-company people I talked to on the phone that yes I need them, I'm the one driving this bladder around and they aren't, how can they possibly know whether I actually "need" them or not? There's a special place in Hell awaiting them, I said... somewhere they really need to pee but can't, they could if they were allowed catheters but--alas, they don't "need" them, so they don't get them. Ever. And thus, they get what's coming to them.

A long pause over the phone, and then the cath-company person said... "We'll see if we can fast-track this." YOU are wonderful, I told them.

There was just a knock at the front door (which I can't get at in any kind of "quick" response time, house ain't built in a way to let a wheelchair get to the front door at all), but perhaps there are caths waiting there? We'll see when we see.

That's the yukky. Now the good...

I had quite the dharma talk with my acupuncturist/neurologist/MD/can't-say-enough-good-about-him health-care-provider yesterday. I'll spare you some of the technical details, they were hard for me to hear and they'll not really make you happier, so let's skim over the details for the moment... Some attitude issues (mine!) need truth spoken to (at) them... Something that definitely needs consciousness-raising is the relationship between the cared-for and the care-giver. It's hard to be a care-giver, especially with the MS "moving target" of illness, you gotta care for yourself if you're gonna care for someone else, and I need to care for her more explicitly. Not just in "give her a day off just to hang with a friend" when said friend contacts her and wants to go hang (or the other way around, my care-giver calls her friends to hang with her) but it's small stuff like wanting my choice munchies to be obtained and kept handy (to me, of course) in the freezer, and yet when she says "I'm too tired to go get stuff tonight," I need to find it 100% true in my heart to say "Waiting until tomorrow will be just fine." Not harbor resentment about how there's never enough time to get me the stuff I want when I want it, to find it 100% true in my heart to be able to honestly say "I can wait."

When we're in the world of "I need my fill-in-the-blank drugs so I can take them tonight," that's a different place. And yes, there aren't many things that I actually want, and on some level, damn it, I want what I want since I want so little. But really, does that make anyone more enlightened, to insist on wanting what I want? Well, honestly, being honest about it kinda does add to my own enlightenment, but that's honesty for you.

So that's my important project. Finding truth, love, and compassion about things that, were I not to become compassionate, would make me smaller and unhappy.

I think I saw on Facebook some sort of graphic about "The greatest physician says that the prescription for this problem is love. Someone else says it's not enough, it's not working."

So the doctor apparently says... "Then increase the dosage."

And that's my new prescription. With, I'm anticipating, side-effects that everyone likes!