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.

1 comment:

Muffie said...

So sorry to hear you're back in the hospital. I hope things get better, and I really hope 'they' can work 'with' you, discerning your individual needs. This disease sucks!