Friday, September 27, 2013

Hoping everything come out OK

Well, it seems that physical issues are on deck for today.

My urologist said that eventually, bladder stuff happens to pretty much everyone who has MS. Bladder gets over-enthusiastic and hydraulic/muscular pressure to get stuff just-plain out goes way up. Or, bladder just gives up, and stops emptying. For my convenience, of course, I get both of those things happening. From the urologist's "empty bladder is wicked better than non-empty" perspective, of course, neither of these really works out well.

Which means, of course, that I'm getting membership in the "cath club." Not as well-known, as well-discussed as the "Slug Club" of Harry Potter fame, but from what I understand, there are a LOT of us in that particular club. As my primary-care doctor told me a little sadly, "We're all men. Eventually, this sort of thing happens to all of us."

Now, a friend who has been in the "cath club" for over seven-and-a-half years assures me that once you get over the just doing of it, which is pretty danged weird lemme tell you, it gets easier. The "big moment" for guys is when the catheter pushes its way past the Big Gatekeeper, the prostate... there's quite the amazing moment that Cleveland Brown would herald by saying "And BOOM there goes the dynamite!" And you're finally and fully catheterized, and the pressure is gloriously relieved. And at the end of the whole thing, you basically don't really mind.  

Or so they say. 

We'll see. More training on the "Robert does it himself" will be Monday at 2:00. We'll see what happens.

'Course the last time I tried to do the training myself, I fainted (entirely normal, in the category of "that s--t happens sometimes," almost never happens a second and immediately-thereafter time, but I'm told there's a trick with cold water on the head and neck that will keep it from happening at all), but the passing out freaked out the staff who was doing my training while the doctor was out of the office (his suggestion to make the most of that "open time") and they called an ambulance and I was whisked off to the ER again. Which story basically ended better than my last trip to that location... but both of those are definitely another story.

So, as the saying goes, I hope everything comes out alright... I really do...!

Friday, September 20, 2013

Jon Stewart speaks

Just a quick check-in, 'cause that's about the energy I have.

I'm sitting up, because the PT folks wanted me (us) to spend as much time in chairs as we could, so we didn't wind up spending so much time in beds. I'm probably gonna throw in the towel really soon and go back to bed anyway.

Had quite the acupuncturing yesterday; left feeling better, and not, and better. Which is typical for post-acupuncture feelings. Today? Better a little. Still wanna go back to bed as soon as I can... doing this with you folks is pretty much all I've got to give.

Next Tuesday, a re-check-in with the PT folks, which I have very little interest in doing, given how a lot of what they call "help" doesn't. Although, to be fair, they were the source of many good tips and excellent suggestions. When the tips and suggestions were good, at least. Thereafter, an appointment with the urologist, where I'll be inducted into the Nozzle and Straw society. (Insert tab A into slot B, and all that.) Which, my regular MD told me, has way more members than most people might think.

More acupuncturing next week. Gotta try to get for him the records of my hospital stay, to answer some of his questions about "t\They told you to take how much of that? Why?" So that he doesn't undo something that's actually worth doing, if he only knew what it was that they wanted to do. I have other follow up appointments, but my phone doesn't know them yet and thus neither do I. They're detailed on some piece of paper, whose location is also unknown to me, but my wife is vastly better organized than I am about these things, she knows where it is.

And where am I now, basically? Wanting to close my eyes and maybe listen to cartoons. Even more remotely, maybe music. But with my eyes closed... I don't like using my eyes much, at all. Have a prescription for new glasses, hope to get to "movable" enough to take that in and start the process. But first things first, e.g., see the urologist & his cronies.

And sleep. Lots of sleep.

Music isn't getting written, I can think about things but I can't take the time/energy right now to type them out. As Jon Stewart says, and as only he can say it... Right now,

"I got nothing"

Wednesday, September 18, 2013


It has been quite a while since I shared with you... since I was able to share with you.

Two Mondays ago, I had an MS meltdown. People have called it an "exacerbation..." I wouldn't know, I don't think I've ever had one. It was certainly a strange one. But whatever it was, it was No Fun At All.

My wife took me into Urgent Care, because I needed catheterization. Urgently, as you could imagine.

For "urgent" care, they certainly attended to me non-urgently. I won't call it "care..." I did way too much sitting around and waiting. Sit in the waiting room. Finally get taken into the Care Zone, to sit in another room for the filling out of forms. Which took a while.

Then I was taken to another room, which at least looked more like a treatment room. But apparently for me, it wasn't, because all I did was sit there. In my own wheelchair. For a long time.

At some point, I heard some Medical Types chatting between seeing patients, as Medical Types do. I wheeled myself to the door, and out into the hallway, where I was maybe 10 feet away from the chatting Medical Types.

I said to them, politely but directly, "Pardon me... They call this place 'urgent care.' I need care urgently. I need catheterization, urgently. If you don't catheterize me NOW, I'm going to kill myself. Or you. Your choice." And rolled myself back into the "waiting" exam room.

In very short order, they came and got me. And catheterized me.

Getting people to understand "urgency" is surprisingly challenging, in a hospital. "I gotta go NOW" doesn't work. "I need a urinal, or you're gonna need a mop. NOW." That works. (I know, I've used that very line, in the hospital.)

Anyway, the urgent care folks, in only a few moments, said "You're beyond us. You need a hospital." So they sent me over (no lights/siren, fortunately), and it was a nice quiet night in the ER, I was the only "customer."

So a few days of various medications, including IVs (they leave a shunt in your arm, because it makes it easier for them to use it, and boy do they use it) some rather nasty manual interventions in the "elimination department," and trust me, you do not want details (ouch), and in three days, they popped me over to the Rehab ward.

Very interesting adventures, in a Big City Hospital, and in a rehab ward, where in many cases "urgent" means "I need to get to a commode" or "I needed to get to a commode but you didn't get me there in time and so now you'll have to clean everything." They go way out of their way to keep anyone from getting to "I've fallen and I can't get up."

Big City stuff: Most of the doctors here don't care about you. They care about your symptoms as expressed by your lab reports, or simple binary answers like "Can you urinate?" They not only have no time to talk to you, they have no interest in talking to you, the human. They only want your data, you the data source. Oh yeah, they call you "the patient."  My own beloved private physician-cum-acupuncturist has only so much time to see each patient, I get that. But the acupuncturists can't treat you, can't even diagnose you, unless they can contact you, the whole person. And you don't get up off the treatment table unless and until you're better.

"Better" doesn't seem to be in the vocabulary of the Big City Doctors I've met here. A couple of them are very much healers, who care about you the human, even if they're working on/through your symptoms. But many of them don't... Punch the card with symptoms & such, that's all they care about, PUNCH they're done, and they wander off. Without even saying "Goodbye," much less "I hope you feel better." There's the forbidden "B" word again...

There's a lot about physical therapy and occupational therapy (which, thank God, thank every god, is a misnomer: I was terrified that it'd be all about "going back to your old job," it's actually about self-care like teeth brushing and bathing) that's very useful. That's immediately useful, to people who have been "accessorized" with the wheelchair like me. Here's how to transfer from a bed to a wheelchair, and back again. Here's how to transfer from a wheelchair to a commode, and back again. Very useful, that. Here's how to transfer to a shower bench, and here's the kind of shower bench you want, and here's how to use the shower-curtain liner with such benches, which stick over the edge of the tub and thus across the "curtain line." Here are ways to approach "where does the cutting board go, when you have problems standing at it, the way you've done before without thinking, in previous years. You can tell immediately that it's a good, and useful, and valuable, idea.

But two things become clear immediately: Physical therapy is about physical problems. They don't do well with neurological problems, probably because their toolkit can't address/improve neurologically imposed problems. How exercise works to increase muscle mass or dexterity, this has been known for millennia. Do this, you get stronger. Poof—done! Like magic!

Well, nerves don't work that way. And, more importantly, if my nerves can't make the muscles fire, the known-for-milennia muscle-building techniques can't work. So, as Steve Jobs was known to say, you have to "think different."

Well, they don't. And if you do... they can't deal. With the thinking, or you.

What has been the most interesting thing about the "rehab experience" is my own process. Me, I need to understand before I try something. And what's most important, if my own direct experience is contrary to their explanation, I need to understand. If I understand incorrectly, I'm happy to change my understanding—explain it to me. Especially More importantly, as Jobs might have said, "explain different." For example, you tell me to do X. To me, X feels dangerous. It neither feels efficient, easy, or safe. I do not dispute your qualifications or training, or the evidence of your senses. But the evidence of my senses does not match what you're telling me.

That, they can't understand. At all. They lock up, just keep telling me to do it because they told me to do it.

And that, for me, makes it a non-starter. Ab initio, as my Latin-speaking scholar would say. "From the beginning." Not just a non-starter, non-startable.

As a friend of mine once said, there is only one "rigor" (rigorous thought process). There isn't a different rigor for music and physics. There is only one. And here's where I and the PTs seem to be, sadly, unreachable.

I love my translator (transport chair cum walker, sometimes AKA "rollator"), and for at least a couple of years has been a close and trustworthy friend.
It has brakes like a bicycle, which when you actuate it, work 100% of the time with zero failure modes. If anything goes wrong and I fall forward, I face-plant into a seat. Or, better yet, catch myself on the seat before face-planting. In walker mode, it can't tip forward and heave me over the front wheels unless you go into flaming-moron mode and try really, really, really, really hard to make it do that. In "real world" mode, it can't happen. Admitting that I'm different now that I was then, it has nevernever, failed me. In any way. Ever.

Well, the PTs don't like it. They like the standard walker. It has a narrower wheelbase, no brakes, no seat.
I hate it. My "walking" speed with it is measurably slower. I've nearly fallen FOUR times, trying to use it. I could tell a detailed story of my point-for-point refutation of its "features" and "virtues," but... DUDE. IT NEARLY MADE ME FALL FOUR TIMES. Shall we go over that again, using those charming "psychological acuity" test materials with nice big, brightly colored numbers?

Truth be told, while on the rehab ward, I'd only almost-fallen twice. In very rapid succession. Which makes their "not listening to me"... better? Because I'd almost-fallen only twice?

So, I really wish they would have connected with me. And here I am, typing this from home (finally!), quite immersed in trying to reconnect with reality. (Took me two days to finish typing this, but at least I did.)

Which is, itself, also quite the story... but as Alton Brown likes to say, "That's another show."

Sunday, September 1, 2013

No help

Well, this was certainly a way to start the day...

So I'm lying in bed poking at my iPhone, and for whatever reason, I'm googling prednisone and primary-progressive MS. Or "ppms," as their friends call it.

One of the first things I find is from the Ohio State University Department of Neurology. Seems a reasonably trustworthy source... I check their FAQ page, apparently they get asked a lot of questions 'cause there's certainly a lot of answers on their page... and I find this:
There needs to be a clear understanding that there is no large study which has unequivocally established the effectiveness of any therapy for PPMS.
No effectiveness of any therapy. Yeah... that's encouraging, isn't it.

Somewhere I think they also said that PPMS is actually SPMS (secondary-progressive), the kind that people with the more common expression of MS (relapsing-remiting) say that everybody eventually gets... Gets better, gets worse, gets better, gets worse, and then one day only gets worse. According to this school of thought, the poor patient actually has full-on MS, but they just don't know it. So here they've been happily relapsing and remitting for God knows how long, but they never noticed or had it diagnosed (or both), but once it gets into the "constantly getting worse" state, eventually they figure out that something major has gone wrong.

Jon Stewart has said this often, and he says it best:
I got nothing.
Art imitates life.

OK, for the sake of argument, let's assume that this is correct: As far as the Big Pile O' Studies is concerned, there's nothing to be done for us. So, then, how do I feel about that?

I suppose I could go passive-aggressive pseudo-Zen and just ask "Well, you're gonna die, one of these days. How do you feel about that?" But that's a way of avoiding asking myself that... so, how do I feel?

I want very little.

  • I want to enjoy rather than regret eating. Pretty much every time I eat anything, I'm sorry I did, in very short order. Certain times of day, certain medicinal herbs, both help me to actually eat and enjoy, but the "three meals a day" plan ain't really accessible, right now. 
  • I want to be able to enjoy visiting my magic club (Hollywood's Magic Castle) when friends of mine are performing there. Which I can't, really; it's a 100-year-old building that's about as anti-ADA as anywhere I've ever been and there's nothing to be done about it other than tearing it down and rebuilding it from scratch. Which ain't gonna happen, being that much of its charm is being 100 years old.
  • I want to sit at my computer and write music. I have music somewhere inside my head that wants to be written, but the actual doing of it is beyond me, too often.
  • I want to be able to write well enough to make notes to myself. I don't need to be a calligrapher (did take courses in that, but it's not my "thing"), I just want to have a thought, and write it down, and not regret the action of writing and feeling like "printing well enough for me to read to myself" is degrading too.
  • I want to feel good about driving my truck somewhere, getting out, doing "whatever," loading me and my wheelchair back into the truck, and going home. Driving is reasonably doable, but loading and unloading the wheelchair? Nope. That's what keeps me home, the difficulty of loading and unloading the device that makes it possible for me to move around the world, non-automotively.
  • I want to cook again. To be able to stand at the cutting board and cut, to stand at the stove and stir stuff in the wok. And more importantly, to plate the food and serve my wife. I was just wandering around my phone yesterday, I found a lot of photos of stuff I had made for Karen and served her outside in the back yard. I can't do that any of that stuff any more. I don't even like using my big cleaver because it's so sharp and I'm dropping everything nowadays and I really, really don't need to drop something that sharp on, for example, me.
  • We just had the back garden completely redone. It's lovely now, perhaps I'll even be able to share some pictures eventually; and in a few years it's going to be unbelievably lovely. Full of yummy edibles, perfect for adding to all sorts of goodies. Depending on the temperature outside and how well my "walking" is going and how well I'm feeling in general, nowadays I'm feeling afraid to go outside, to make the two steps down from the house to the chair that always awaits me. I didn't go outside during any of the "wow, look at the moon!" evenings because I was especially afraid of going out there at night. 
I suppose I could drone on for a while, but you get the idea; I really don't want much. I don't want stuff, I don't want trips, I don't want equipment or clothing (in fact, I keep giving away various bits of what I have... at least I can get some enjoyment out of gifting things to people I care about). But right now, my days go very simply... Get up eventually; eat something, usually; regret having done so, too frequently; do some business at the computer; make some tea (at least I still can and still enjoy that); and then feel defeated and go to bed. Maybe sleep. Or just close my eyes and lie down and listen to something, maybe. Lunch, eventually? Maybe, but usually regret eating anything immediately. Go back to bed, probably. When it's late enough, have some herbs that make me a little loopy but otherwise make me feel pretty good, actually enjoy eating something, but at home; no going out, almost never going out, because the effort to go out is unpleasant and I can't really engage with the world and usually feel uncomfortable after eating. Although I do enjoy leftovers the next day... stuff generally gets better overnight, and I can squirt some whatever-we-got-in-the-fridge to add to the sauce. Leftovers in the toaster over, I can still cook. Plating what I've cooked, that's nasty hard, especially from a wheelchair when you're losing the ability to grip and control with your hands (see above under "can't write" and "dropping things").

Well, it took a while to go through the list of what I want, but the question remains: how do I feel?

I don't know. I think I'm giving up, actually. Really, really disengaging. 

So, I guess, the bottom line is, what do I want? To care. I'm sure there are all sorts of things I could do, even in the evaporating/withering state I'm in. But to set it all off, I think the first step is to care

And that's where I'm really deficient. And if there ain't no help for PPMS, there sure as hell ain't no help for "not caring." So, what is completely within my control? To change my consciousness. And how does one do that?


I suppose I should turn to the Book of Changes. It's not about "what change to make," it's about the process of making changes. Small changes create big changes. Yeah, I should read that!

Except reading is unpleasant, too. Eyes going wacky... not optic neuritis, fortunately, optometrist says my optic nerve is wonderfully fine, it's the motor stuff of focusing the optic lenses.

Ah, motor stuff going bad. Where have I dealt with that before? Oh, how should I put this...

Daily. Hourly. Constantly. And, as Dumbledore said of the whining child underneath the chairs at King's Cross Station at the end of the final Harry Potter book, "There is no help possible."

And yet, change is called for. Not help, but change.

Amazing disease, the MS, ain't it?