Thursday, October 31, 2013

A gift / surprise

So when I was in the urologist's waiting room, I chat with a mother and 7th-grade son (the youngest of 3, the oldest is going to be heading off to college next year). So I tell the kid some ways to take charge of his own fate in how one (he) approaches his school work--it was clear that Mom was someone who took No Grief From Anyone, so helping the young one to grasp and use his own power, I figured she'd approve (oh boy, did she ever!) and also told her some of the really cool--and really true--things about walking the "college road" simply and cheaply, and how starting off at a community college was not just a cheap thing, but a good thing... "Tell my brother the college teacher who started at Glendale College, and me who got two degrees from Yale and then a doctorate who also started at Glendale College, that community college isn't a good thing. We certainly don't think so... so yeah, go for it!" I smile, Mom smiles. Everybody is happy!

And here's the kicker... I "shared the shiny" as a friend of mine likes to say; I reassured Mom who's facing the Unknowns of College for her eldest, and worried about how the Little One is going to survive middle school (middle child is safely lost in the fog of high school, for the moment, but what I told her about college will definitely return to assist her). Told the child "You do things the X, Y, and Z way, and YOU have the power." Kid looks bewildered that he might actually have power to control his own life, and Mom is very happy for child to hear this and clearly is definitely going to remind him of this in the years to come...

And the reason that I was able to bring this comfort to those two people on that particular day in that particular place, is because I have MS and an oddly functioning bladder and I needed to talk to that particular urologist on that particular day in that particular place.

I was precisely in the place that enabled me to help people because I have MS. And that particular version of MS, that brought me to that urologist on that particular day.

A gift that may very well keep on giving, that I was able to give because I have MS.

That is indeed a very surprising gift. To be thankful for having MS because it catalyzed me helping other people.

As a friend of mine paraphrased the Grateful Dead, what a long strange trip it is.

Wednesday, October 30, 2013

I got an A!

Where did I get that, you may ask?

A delightful visit to the urologist yesterday. I told him how I'm approaching my experience within the "cath club," about what I'm trying, how/why I prefer what I prefer, how/why I approach things the way I do, and he told me (and here's where I got the "A" from):

"Well, you're doing better than at least 95% of the people in your situation." He not just approved of, he loved, the way I was approaching and solving the problems that came before me, and provided really excellent answers to the questions I was having (I think, actually, that he was happy that those were the questions I was asking).

So what am I left with? Yeah, do things the way you've been doing them, here's how many hours to wait between cathing except I should definitely do it, schedule or no, under certain particular circumstances; how to decide whether or not to wait, regardless of what the clock had to say.

So, yeah I'm encumbered by having become a care-giver specifically to my bladder, but y'know, it's really not so bad, considering what else is wrong and needs working with or around.

And... I drove my truck today! Just to adjust it into a better parking spot, but still... I drove it off the property, did a tiny bit of "drive around the street," and parked my truck in what may be as close to the "best" spot it can currently go. Perhaps tomorrow, I'll drive it around the block and see how that's going. Perhaps in the not-too-horribly-distant future, I'll actually drive my wife somewhere. Lunch, maybe. Or even dinner, who knows? Stranger things have happened. But we'll have to see how that works out... spending all that energy to get ready, then get somewhere, then be somewhere, then.... hmmmm.... Oh, let's just drive it around the block first. Maybe to the bank, maybe to the post office. Those'll be difficult enough.

And "hard enough" is hard enough, by definition. And this life-with-MS thing definitely fits well within the category of "hard enough."

Friday, October 25, 2013

I got nothin'

Today is already interesting and full of just-plain for-the-moment-at-least giving up.

I'm living in what the realtors would call a "charming mid-century home." The good news is that all the doors are perfectly lovely to push a wheelchair through... Except, of course, for the bathroom doors, which are each, and identically, just too narrow. Why the architects decided that one size door would be perfect for every last room in the house except the bathrooms, I have no idea. Probably wouldn't want to find out, actually, the world of h/c-accessibility-things being what they are. The floor is charmingly almost level, so when you let go of the wheels, the chair might wander forward or backwards, as the floor would lead you somewhere. Not annoying, interesting. Sometimes even funny! But the narrow bathroom doors... not interesting, not funny. Well, funny yes, partially because I can still wall-walk (or in this case, sinkboard-walk) enough to make it in there. I'm sure even I could find being stuck outside the bathroom funny, but... Really, I've got more than enough things that I find funny that wouldn't screw me up as much as not having a bathroom of any kind immediatelyu available.

I haven't found the strength to even sit in the studio today, even to use the computer there today. I'm sitting in my recliner with my laptop, handling some business (probably gonna order something online) and then, see above under just-for-the-moment-giving-up, I'm going back to bed.

Today I made toaster waffles for both me and my wife, and some bag tea (we're out of the loose stuff I really like, and we've discussed maybe going out for more, should I ever feel good enough to leave the house for such things).

Weather is beautiful. Lovely and autumnal. I don't know when I'll be able to go outside and enjoy it for more than a few seconds. This afternoon? As Aragorn often said in the Lord of the Rings, "Who can say?"

Still recovering from Magic and Meaning, the convention held last week in Nevada. I really, really enjoyed it, and I think from what I heard from my fellow conferees, so did everyone! Below, a quick shot of me, mid-lecture:

One thing I haven't re-aquired, though... Something that my magician friends all have, in spades: They're driven to create. Driven to create. I used to be. Now I'm not. Now I'm going to bed (really am). I may... may... stay up long enough to have lunch. Which my wife tells me I need to eat. Which I don't want to eat. A conflict (to eat, or not to eat? That is the question), one which repeats basically daily. I'll snag a few herbs and then eat, I guess, my wife's basically correct about "Dude, you HAVE to eat SOMETHING," presuming the "keep living" thing is important enough to pursue.

But I'd sure love to rekindle the "create fire." Don't know how. Would love to, but...

As Jon Stewart has been know to say, "I got nothin'."

Well... I don't.

Wednesday, October 23, 2013

Finally, reconnecting!

I have just returned home from a week out of town; a few days at a magic conference at which I was the lead presenter (no pressure, right?) and then a couple of days at what could only be considered a paradigm paradise in the mountains.

The usual re-re-re-re-re-discoveries of "helpful for the handicapped" Stuff which, when tried by an actually handicapped person (that'd be me), are actually not at all helpful. It took a while to explain to the maintenance guy at one hotel that bathroom doors need to be MUCH easier to open from ***BOTH*** sides; make it too hard, and Guy In The Wheelchair finds himself unable to get into the bathroom (not good at all) or finds himself trapped inside the bathroom (differently not good at all).

The paradisical mountain cabin was just fantastic except the handicap-helping things were significantly UNhelpful. There was a wheelchair ramp into the restaurant, but not into any of the rooms, and the "handicap friendly" room we stayed in had this bed that was so far above the wheelchair that "transferring" wasn't even vaguely possible, and if I didn't have as long legs as I do and can sorta-kinda walk as well as I do, there would have been no getting into the bed at all. Fortunately I was saved from difficulties and disaster, but it was weird and took way too long to figure out...and the height of the bed over the seat of the wheelchair would have caused the PT folks I struggled with during my recent hospitalization to completely lose control of all their bodily functions as they tried to call what I had to do to get into bed as a "transfer."

Hm, what else to share? Still doing just fine as a member of the "cath club," having to kinda-sorta empty my bladder with a straw (catheter), I'm back to the urologist next Tuesday where I'll get my swath of questions answered and who knows what else will happen there.

Most interesting thing about hanging with the folks at my magician's convention was that they do what they do because they're deeply passionate about just doing it, if not doing it life-changingly amazingly. God, I love them. But do I have that passion? I thought I might very well rediscover it when I returned home, but right now, this very second... all I want is to go to bed. Which I'll be doing as soon as I'm done here.

Not being able to walk is one thing. Needing to catheterize myself is another thing. Not having any passion, the kind of passion that sets in motion the changing of the world, if not the universe... that's another thing. And that's the hardest of all.

What's to be done about that passionlessness? Something I haven't tried yet, obviously, because if something I'd tried had already worked, I'd be bathing in my own passion and Getting Things DONE! But I don't... and really, really, don't know where to go.

Except at the moment, where my destination is... bed.

And so I go. With any luck, now that I'm back at home with my homey internet access, we'll stay in better touch. And the passion? We'll see, we'll see.

I hope.

Thursday, October 10, 2013

Little gifts

Negotiating the "side effect" waters...

So the "gift that keeps on giving" from my stay in the hospital is a handful of drugs, none of them MS-specific. A few things that do what, I don't know, but they tell me they're supposed to help my annoyingly-functioning bladder. But whatever it is this stuff does, I do know that it's all very clearly stickered to warn me that it may cause drowsiness, be sure not to drive!

Now, it's one thing to wander around as high as a kite when you're comparison-shopping medical-marijuana varietals, but bladder pills? Not nearly as much fun, I'm guessing (what little "thinking" can happen while buzzing on bladder pills). And more than a little odd, especially when you're trying to do something requiring, y'know, clear thinking...

I haven't had the wherewithal to deal with trying to write music right now, I've only managed to sit at that machine very, very briefly, since I came back from the hospital. But, I am trying to accomplish something! For years, I've attended the McBride Magic and Mystery school in Henderson, Nevada (just minutes away from Las Vegas), and for years I've made presentations there, even being the first presenter at the symposium, a spot I might very well be scheduled for this year! No pressure, right?

So I'm practice-giving my presentation over and over and over, not just to rehearse it but to help me find places to fine-tune the script or to cut, cut, cut! for time. Well, that's going pretty well, all things considered, but what I'm really concerned about is traveling to another state while being in the Cath Club.

We haven't really really really decided whether to do the plane or the car... By car alone, it'll take around four hours, door to door. By air, it'll take a half-hour from home to airport, hang in the airport for at least two hours, flight for one, at least a half-hour to get outta the airport and off to the hotel (maybe longer, depending on what else is going on in Vegas that day) which makes the total time into... uh, four hours? At least?

I think one of my friends also in the Cath Club has done so on an airplane, but I'm kinda ginchy about that, and having to explain to TSA that yes, the betadine IS medical and your web site says I can take medical liquids, and no you can't stick the "am I an explosive" test strip INTO the bottle because that'll destroy its sterility which is the only reason to be traveling with it, but I can squirt it into something else for you to test-strip it, and no, you can't have it because if you take it I can't pee, anywhere, ever, until I can find more of it somewhere which will take MORE time and... yeah, maybe the car's the way to go. Besides, with my wife's new Prius, it'll cost less than flying, the gauge on the front panel regularly reports that she's getting between 50 and 100 MPG, which the airplane definitely doesn't.

So, we'll see. In the meantime, it's back to hacking at the presentation, but in the meantime... Do I feel... hungry? Even sort of? Kind of? A little?

That doesn't happen much. But to this I say... thank you!

Little gifts are still gifts.

Sunday, October 6, 2013

Another gift; another surprise!

I'm really quite surprised how well being in the "Cath Club" is working out. I have shied away from it for quite a while, I definitely shied away from it while I was in the hospital, but now that I'm doing it twice a day, I'm wondering if maybe I could stand to do it more.

Yes, it doesn't suck "that much." At worst, it's "Well, that's weird..." and isn't even as annoying as a rock in your shoe. And it may reveal what's going on during certain "I have no idea what's up with that" bladderisms, who knows?

Considering all the weird crap we gotta deal with, the even weirder crap we all have to do, something that is so UNweird that I'm left with the idea to try it more frequently...

That's definitely a gift. Not in the same overwhelming-spiritual-transformative category that many of the other gifts of this disease come in, but...

A gift is a gift. And boy, am I thankful for it!

Thursday, October 3, 2013

Quoth the Narnians

Another venture into the physical, rather than the spiritual...

So, I'm definitely a member of the "Cath Club" now. Sticking a straw into... oh, as they named a "similar" object on the Venture Brothers, let's call it The Nozzle. You know what I mean.
A few things to share that may come in handy for some of my fellow MSers... especially since my urologist says that eventually, everyone with MS eventually gets full-on bladder "issues" and has to deal with this sort of thing.

First thing: There are several kinds of urinary catheters (plus different models for men and women due to different "roads" needing to be traveled between the bladder and the Outside World—Being a Guy, that's the kind I'm familiar with). The kind that YOU need is the kind that works best for YOU. If the insurance company (or whoever) tells you that they know what's best for you, just throw it back in their face—no, they do NOT know. My insurance company wanted to know if the model I wanted was necessary, couldn't I use kind "X" instead? I told the person at the cath company, if the insurance company insists on using their model cath, they're fucked. They're not "wrong," they're fucked. Because I tried the model they like and it does not work. My doctor is asking for the model he's asking for because we tried all of them and the one he's asking for is the only one that worked.

What else do I wish I'd been told? Everyone tells you "you get used to it," but to my experience, you don't "get used to" it, your urethra stops complaining as loudly—which means it gets used to it—and if you have the right model of catheter, it goes through the Prostate Gate easily and does not hurt when it makes that transition. The wrong-model catheters all hurt, and none of them would go through the Prostate Gate, even when the nurses were doing the shoving. I got cathed last week at Urgent Care, and that definitely was no fun at all... But I'm doing it to myself now, and the straw being inside The Nozzle is still definitely more than "a little odd," but that's as bad as it gets, and going through the Prostate Gate is completely painless, quite a nice surprise, actually, as suddenly all that urine that the bladder was unwilling to void itself without help suddenly finds the exit through the straw and away we go!

So always be gentle but always be insistent, that catheter is definitely gonna go deeper in but it doesn't "need to hurt," if you're doing it compassionately enough. Keep breathing! Take it easy, keep relaxing... relax more with every breath, "ouch" or no "ouch" from the catheter being inside. Keep breathing, keep pushing gently but firmly. With kindness! And when you make it through the Prostate Gate (which you definitely won't unless you keep pushing, and also definitely won't unless you're using the right-for-YOU catheter), bladder finally gets to empty itself, which both it and you have been waiting for it to do!

So, my MSer friends, if you get stuck having to do this, which I'm told you all will eventually have to do... just remember the important things: Use the right-for-YOU catheter, keep breathing, keep relaxing, keep trying to piss around the catheter (helps you make and keep yourself internally "open"), and as you gently but firmly but always compassionately keep pressing the catheter inwards—as the Narnians said so enthusiastically during The Last Battle as they headed towards Aslan's country:
Further up! Further in!

Tuesday, October 1, 2013

Less is...

What a day, what a couple of days...

2:30 yesterday, I had an appointment at the urologist's for practicing my own participation in the "cath club." A friend of mine has been doing it for 7.5 years... quite doable, quite withstandable, very much makes things on the whole "better," once one makes it past those amazing moments of insertion.

I should count myself lucky... NASA's Curiosity crew had to live through "seven minutes of terror," I know someone who was in the control room during those very minutes, and what I have to go through will notin'sh 'allah, take seven @$#ing minutes. Although it might be terrorizing, in its own way... For a while, it'll probably take longer than it "actually takes," especially figuring out the final Prostate Push to get the flow finally moving.

I and my long-suffering wife/driver took a trip to Ten Ren afterwards, got a favorite tea and a dinner, even.

That was yesterday... And now, here we are at The Next Day, and I needed to cath myself, without help. Which I did! Took way too long, but fortunately there was not much suffering. Actually, there was no "suffering," as such. Once the cath made it through the Final Gate, that darned prostate, everything was fine. And fortunately, very fortunately, there was resistance and unwillingness but not pain, as such. Yeah, a couple of moments of "Factory didn't design this stuff to have a rubber tube shoved up it," but I'm already seeing the distinct moments of "This ain't gonna be an issue at all!" and "Here's the part where I really don't want to play this game,"  but it's going to be experiment and practice, not regret upon regret. So far, at least... From my mouth to God's ears, as the saying goes.

From God's mouth to my prostate, I suppose, is how it actually works. I'll take that too.

So, bottom line is, something I've been terrorized by, is a non-issue. What's keeping me from full-blown non-issue status is just practicing, which itself is, basically, amazingly merciful. The worst so far is "Well, that's weird," which for "worst," is none too bad!

Us in the Society of Nozzle and Straw, we take what we can get, however we can get it. Because with a bladder that doesn't like emptying, less is definitely more!