This glass is half full.

Sure, it sucks to be diaper-dependant at the age of 36, to be allocating money to your section 125 account for the substantial amount you will spend over the course of the year on Depends, to fret over whether to pay a few bucks extra to get them shipped from Amazon instead of going through the grocery checkout line with them.

On the other hand, when, on occasion, you roll over in bed just a little too far toward your sleeping spouse, such that when you wet the bed, as you do maybe 1 out of every 3 nights, thereby actually wetting the bed and not merely the waterproof pad on which you sleep , consider this: the perfect cleaning product for the task is an enzymatic spray that is available at your local pet store, and the packaging of that product features a sheepish-looking beagle, not a picture of the sheepish-looking 36-year-old man that you see in the mirror.

Hey, look at that

Factoid: the NYT story on a recently published study about genes linked to multiple sclerosis (with the somewhat Onionesque title "Advances Cited in Research on Multiple Sclerosis") is currently #5 on the site's list of most-emailed stories. More support for the notion that everybody knows someone who has MS or knows someone who knows someone who has MS. Again, I ask you: Why haven't we been able to find our Michael J. Fox, our attractive, young spokesperson, who raises the disease's profile a couple notches?

One mystery solved

Last Wednesday, I started feeling really crappy: achy, tired, and a little dizzy. It was a familiar feeling. I'd last felt it the day a few years ago when I'd mistakenly taken my bedtime pills in the morning. This time, though, I was certain that I'd taken my AM pills (after the last med mix-up, I bought a pill case of an entirely different color and design for my AM pills). The only thing I could think of was that I had probably missed a couple days of amitriptyline after forgetting to pick it up at Walgreen's.

Well, Friday morning, I figured it out: yes, I had correctly taken the pills from the AM pill case, but I had mistakenly portioned out the elongated, white nefazodone tablets, instead of the elongated, white Provigil tablets. So I wasn't getting the Provigil boost, and was instead giving myself more than double the correct dose of nefazodone and getting most of it in the morning. So I sorted out the right pills, and started feeling better almost immediately, although I woke up with really sore hips on Saturday.

It sure would be helpful if the makers of ordinary-looking white pills would give them some kind of obvious distinguishing mark, like a wacky shape or some kind of color. Flomax is good: orange/green capsule; Cymbalta is good, too: blue/green capsule. But Provigil kinda looks like nefazodone, which kinda looks like Tylenol. Baclofen and amitriptyline are both ordinary-looking round pills. I guess I can understand why the generics might forgo fancy shapes and colors, but Provigil? That stuff is expensive. My HMO pays good money for the stuff. You'd think a Schedule IV drug would have some flashy color or something. Oh well.

By the by, you've probably seen the articles about the discovery of three genes that are linked to MS. See the WaPo article here. According to the Post, these findings give you and me "new hope." I think that's hyperbole, of course, because this kind of study seems more to suggest how much we don't know about MS. After all, the Post article quotes one of the investigators as saying, "We suspect there will be dozens, perhaps hundreds of gene variations associated with MS."

Speaking of new hope, I have officially concluded that I received no benefit from the Botox procedure. No change in urgency, emptying, bedwetting, dribbling, or any of the bladder-related indignities. Too bad. On the other hand, I got to see what the inside of my urethra looks like, so it's not a total loss.

Blushing at history

Spent a lovely weekend at my dad's place. Did a little fishing, a little grilling, and a little just sitting and watching: watching the dogs (our 2, plus my brother's 2, plus my dad's 1), watching the hummingbirds at the feeder (surprisingly aggressive, chatty things), watching my 65-year-old father trying to get a wireless network functioning, watching my 13-year-old half-sister change from a cute, dreamy little kid into a startlingly beautiful, startlingly bright, er, woman, I guess.

About a month ago, Dad and brother made a trip out East to see Uncle Crabby Weirdo and to recover some materials for the family archive from the Ancestral Home in eastern PA. I would have liked to go, but work kept me at home. Fortunately, they returned with tales of Uncle Crabby Weirdo's scary house crammed full of crap and his diet of frozen pizza and microwaveable "entrees." The real jackpot, though, was the cache of old letters sent from my grandma to my grandpa on board various cargo ships at exotic ports of call (Port Said, the Canal Zone, Jakarta, Karachi, etc.) and the telegrams and letters from him to her, first to Miss S.R. on Adelphia Street in Brooklyn, then to Mrs. G.S. at the Ancestral Home.

The letters and telegrams filled a large duffle bag purchased especially for the purpose of bringing them home. We sat around reading excerpts from letters, from V-Grams sent during WWII, from Western Union telegrams, just scraping the surface but finding little jewels--in my grandma's functional, legible script, and in my grandpa's indecipherable but gorgeous fountain-pen scratchings--that hinted at some great stories. Confirmation that Uncle Crabby Weirdo was conceived out of wedlock. Grandpa insisting that he loved her and would have married her even if she wasn't pregnant. Grandma's chuckling account of my dad's insistence at age 2 on running around the neighborhood naked from the waist down. Grandpa's fear that he would never amount to anything, his longing to be home with his family. Everyone agonizing over money and the war. Good Lord, discussion of birth control and some startlingly raunchy bits of postal erotica, which someone had tried in vain to obscure with ink scribbles.

The photos were icing on the cake: rowing a wooden boat at Harvey's Lake, kids displaying little bitty fishes, picnics, gathering huckleberries, presents under the Xmas tree, and some cheesecake shots of grandma topless on a beach.

"Grandma topless." Just try saying that out loud; it won't come out, will it?

Fishing season ends, self-pity season begins

It had been maybe a month since I'd last been out in the boat, so I'm not sure why I expected it to fire right up or why I actually took the can of starter fluid out before hooking up the trailer. Anyway, I left work a couple hours early on Monday, intending to spend a few quiet hours on the lake. I've been working too much lately, coming in on Saturdays and such, so I was anxious to get out on one of the few cool days we've had around here.

Of course, the motor wouldn't start. I think I might know why, but I'm feeling less like fixing the situation and more like pouting about it for a while. After spending ten minutes cranking the starter (electric, thank god) and fiddling with the gas line, the mixture, the choke, I had to haul myself up on the dock and stumble back to the car and get the boat back on the trailer. Which usually isn't a problem, but somehow becomes another 15 minutes fighting with the boat, shoving, tugging, cranking, while a woman and her son skip rocks on the lake from the dock. By the time the boat is finally on the trailer, I'm fully discombobulated, and steady myself against the car as I try to get from the trailer to the driver's seat, and the woman and her son are looking at me, probably trying to decide what particular chemical I've been abusing.

In truth, I don't think I'm quite ready to give up on one of the few activities that still provides me with some transcendent moments of bliss. I'll probably get the boat running when the weather starts to cool off a bit and, in a few years when my wife's new career as a nurse is well underway, maybe we'll have enough scratch to replace the leaky piece of shit with something newer and nicer. For now, though, I choose to stay a little bitter about this small indignity.

Yuk: working on a weekend

It's a gorgeous day outside and people are absolutely mobbing the farmer's market, so parking is a hassle. But I don't get to browse the produce and people-watch, because I am here to work. It's crunch time at the office, and I've got some serious work to do. Which I am not currently doing, seeing as how I'm blogging about how much I resent being here. Which means I will be here that much longer.

I'm a little sleepy, a little dopey, and my thighs are burning up after an hour and a half in my desk chair. Maybe it's worse because it's Saturday, or maybe it's because I'm wearing shorts and the upholstery of the chair is right up against my skin. It helps that on a Saturday in the office the radio is just a little bit louder and the clothes just a little more comfy. Still, this is the kind of thing I worry about: sure, I can keep up on a regular workday, and at the end of the day, especially on Friday, I'm thoroughly whupped and cranky and ready for a bit of R & R over the weekend, but can I still keep up with the workload when I have to get up on Saturday and drag my sorry ass to work? Fortunately, this probably won't happen next weekend or the weekend after that. But it does make me think.

OK, back to work.

Especially for Stephen: More about my urethra

Well, like most of my run-ins with the medical establishment, getting Botox injected into my sphincter wasn't as bad as I feared. It will be a couple weeks before I'll be able to tell if it helps.

A few hours before I was due to have the procedure, I was still waiting to hear back from the HMO about whether they'd cover it or not. I'd called them as soon as I scheduled the procedure, but played phone tag for a few days until yesterday, when I finally got hold of the woman who is apparently my "case worker." At first, she said they would not pay, because as of their most recent review of the literature (last March) the procedure was still considered experimental. So I figured I'd have to call off the procedure and wind my way through the appeals process, and I told her so. She told me she would double check with Dr. So-and-so, and would call me back.

As soon as I hung up, I dialed the urology clinic to ask if they could give me any ammunition to support the necessity of the procedure, but the PA I talked to acknowldged that they knew some insurers--particularly Medicaid--took this position and there wasn't anything definitive in the literature. At this point, I was also cruising PubMed for anything recent on the topic, but without real success: just a review published a little less than a year ago, with an abstract that didn't really say anything.

At that point, my case worker from the HMO called back and told me to go ahead, keep the appointment, and they would pay for it. She didn't exactly say why, but she said she'd be contacting my urologist so that they could get more current information about the procedure. She offered a nice apology--We're sorry, we promise we'll do better next time--and called me "Kiddo." I imagine this woman probably feels like she knows me pretty well, knows all about my MS, who I'm seeing and what drugs I''m taking, and why.

So the procedure took about a half hour. Strip nekkid, get on the table, put your legs in the stirrups, and wait for the docs while the nurse sponges iodine all over your bits. Then, a little bit of lidocaine in the pee-pee, you might feel a little chill, then a clamp is gently attached to the family jewels, and you stare up at the ceiling while you wait for the doctor to show up.

Twenty minutes later, here comes Dr. A with Dr. B in tow. Dr. B is a resident and he'll be doing the procedure. Between my elevated knees, I see young Dr. B fiddling with the thing that will be shoved down my urethra like a sharp stick through an Oscar Myer wiener at a cook-out. At this point, my pulse escalates from the already elevated dumpadumpadumpa to hummingbird-speed wheedleeedleeedle, and I blurt out, "Oh, that's just great," and immediately regret it. Dr. B is unfazed and tells me he's inserted catheters maybe 600 times and I won't feel a thing.

And God bless him, Dr. B is right; I didn't feel a thing. Dr. A points at the monitor and shows me what the inside of my urethra looks like: it looks like the inside of a water slide, except it is a sort of blotchy pink and there are no screaming half-naked children whooshing through. When, a few seconds later, we get to the sphincter, I shut my eyes.

Dr. A is now addressing Dr. B, telling him where ("there, right at twelve o'clock") to do the injection, and a couple seconds later, I feel a jab somewhere where I have never been jabbed before, and I jump a couple inches off the table. It's dulled by the lidocaine, though, so it's like when the dentist puts the giant needle of novacaine deep into your skull. They do this a couple more times, then suddenly I feel a trickle of something run down my bottom, and the catheter's out, and the doctors are out the door. Somebody brings me a few towels, and then I'm left alone to wipe off the iodine, dress, and go home. I eat a big piece of carrot cake in the car while my wife drives me home through rush hour traffic.

Yes, afterward it hurt when I peed, hurts a little less today. Last night, I remember that somebody said something about getting a dose of Cipro to make sure I don't get an infection, but somehow I left without it. All in all, sorta unpleasant (like going to the dentist, except you're wearing no pants and everybody's attention is fixed on your crotch), but less unpleasant than the hated pressure flow study (smaller catheter but no anaesthetic, plus the butt-plug and electrodes).

If it works (how do I know if it's working?), I'd do it again.

Bad idea

Going on a fishing trip off the coast of Iran is like going deer hunting in the DMZ between the Koreas.

Big day?

Today, I get my Botox injection. Maybe. I'm still waiting for my HMO's Care Management Department to tell me whether they'll pay for it. I guess anything involving Botox gets extra-careful attention. Because, you know, it might not really be about improving my bladder function, it might just be costmetic. Because, I don't know, I have a wrinkly urethra?

Botox on tap

I called my urologist and scheduled the Botox procedure for next week. As it turns out, I won't be getting it in the bladder detrusor, but in the, uh, pee schincter (just now, I can't remember what you call that gizmo). The immobilization of the bladder detrusor is for those who are self-catheterizing, because you can't pee without the detrusor. I'll be getting the sphincter muscle immobilized, which won't do anything to stop the detrusor spasms that send me running for the potty. What it will do is stop my pee sphincter from closing up when I try to get my detrusor to contract, permitting me to empty properly.

I need to get clearance from the HMO, but the urology department reports they haven't had any trouble getting my HMO to pay.

What's really in my fridge?

I like to cook, and like a lot of foodies I know, my fridge and freezer are littered with little bits of the miscellaneous ingredients that make for interesting food creations and experiments. In the freezer, there are little bags of assorted nuts in various shapes: filberts, pecans, walnuts, almonds (sliced, slivered, whole, raw, roasted and salted). There's a bag full of fist-sized lumps of homemade chorizo, a smallish baggie of keffir lime leaves (essential to a good Thai-style curry), bread yeast, some beef short ribs for soup. The door of the fridge contains the usual assortment of condiments: mustards, jellies, pickle relish, homemade maple syrup, olives, pickles, Worcestershire sauce, curry pastes.

The fridge door also contains a dozen bottles of assorted Asian staples, all of them picked up at one of our local Asian groceries. I love wandering around these stores and sifting through the endless varieties of sauces, noodles, teas, fungi, and what-have-you. I don't really buy the exotic stuff, but I do keep on hand some of the basics: Thai fish sauce, a couple kinds of soy sauce, oyster sauce, hoisin sauce, chili sauce, black bean paste. All of this is imported. I haven't really paid attention to where it comes from.

This morning, I laid in bed listening to a story about the growth of foods imported from China and the questions about the safety of some of that food. It's not just pet food, of course, it's people-food, too, and it's not always possible to tell when you're consuming imported food. This is because in addition to finished products, China exports a lot of ingredients used to make the stuff we buy. FDA inspects only a tiny fraction of the foods we import. Without going into detail, it was a little spooky.

So I'm thinking about placing more importance on buying food from closer to home, even though it might cost a bit more. I can't give up oyster sauce or curry paste, but there has to be a domestic source for the stuff. That might not guarantee the safety of the product, but maybe it improves my odds.

Link to NPR story.

Michael Moore's new movie

So Michael Moore's new movie Sicko is being favorably received in Cannes. Sicko is about how bad the American health care system sucks and why it is that we seem to like it that way. Snip from the LAT:

"I don't have to convince the American public that there is something wrong with our health care system. I think most American people already feel that way," said Moore, who enjoys great coverage himself through the Directors Guild of America. "That's why I don't spend a lot of time in the film on the healthcare horror stories. I wanted to propose that there's a different way we can go with this. I'm hoping that the American people, when they see this film, will say, 'You know, there is a better way, and maybe we should look at what they are doing in some of these other countries..."

Link.
I appreciate Moore's viewpoint, but not his confrontational approach. I didn't see Fahrenheit 911, not because I think the present war is good public policy, but because I think instead of starting a conversation at the political center, the movie just added to the shouting match already in progress between the people at the fringes. So when I heard that Moore was making a movie about an issue that affects me deeply in a very personal way (which is not to suggest that I consider terrorism/war/foreign policy/everything else to be a garnish on the garnish of our great political ham), I was nervous, even though I'm all for single-payer and figure he is, too.

The LAT reports, however, that Moore has, in Sicko, forgone some of the confrontational episodes that marked his other films. Snip:

"When people say there is no confrontation in this movie, to me there is a big confrontation in this movie," Moore said in an interview here. "Because I am confronting the American audience with a question: 'Who are we, and what has happened to our soul?' To me, that's maybe more confrontation than going after the CEO of Aetna or the CEO of Pfizer." The reason Moore feels compelled to ask this "Sicko" question is because, he feels, the country unthinkingly settles for substandard and ruinously expensive medical treatment, especially when compared with countries with universal healthcare.

I'm looking forward to seeing Sicko, but mostly, I'm looking forward to an invigorated popular conversation about the issue. Hold the chest-poking, though, please.

3d ventricle?

These are coronal views from MRI head-shots last fall. I think the third ventricle is the little opening indicated by the red circle. Hard to believe you could tell much about the size of the little guy from a sonograph, but I'm not a professional. I've also got some MRI films from way back (1993?); I wonder how they'd compare.

Thinking about grandpa and physical therapy

One of the MS-related abstracts last week was something about multiple sclerosis and Guillan-Barre Syndrome. I don't remember anything about the abstract, but it got me to thinking about my late grandpa, who had GBS and died when I was a freshman in college.

He was an interesting guy, from the little I know of him. He was born in Sweden and, along with a friend, ran away to sea as a kid, in part to escape a troubled family life (troubled like Dickensian troubled, I guess). Eventually, he became a ship's captain of, among other vessels, liberty ships during WWII. On day, maybe in his fifties, he woke up while he was at sea and couldn't move. That was the end of his working life.

As a kid, I knew him as a frail-looking old guy who shuffled around a big old house in old-guy Hush Puppies and spoke heavily-accented English, which made him hard to understand. I can remember picking up the phone as an adolescent and being so unable to understand him that I thought it was a crank call. He had a passion for gadgets, mainly photographic or electronic, and liked James Galway and Miller High Life. He didn't smile or laugh much, except occasionally at the dog, an Airedale named Bingley (there were a few different dogs who played the role of Bingley). I think he was probably an alcoholic at some level.

He had about a gazillion photos he had taken during his life at sea, of places he had been and ships he had sailed. I have a copy of his picture of the Steel Maker in my office. There were plenty of pictures of him, too: a trim but muscular, stern-looking guy in a uniform, who looked like someone not to be fucked with. I remember him talking about the time he had a lion or tiger or something like that on the ship in a cage as cargo, and the lion or tiger got out of the cage and jumped overboard in the middle of the ocean.

If he was still around, I'd like to think that I would have some kind of insight into who he was, how his life had been changed by his illness, what it meant to go from sailing around the word to tending to the geraniums hanging on the porch.

I got a little taste of that feeling at my last physical therapy appointment. The thing about physical therapy is that the exercises prescribed for you will do one or both of the following: 1) make you intensely fatigued, because the whole point of PT is to find those motions that are most difficult for you, and 2) make you feel like a big sissy, because you know that the exercise you are supposed to do is something that most people do every day, maybe all day long, and think nothing of it.

Actually, PT is going pretty well. I think my therapist is very smart and conscientious, and she has been very adept at zeroing in on my weaknesses and modifying exercises if necessary. The problem is finding the stamina to do my exercises and all the other things I must do or enjoy doing. During the work week, do I do them in the morning before work, such that I arrive at the office already pooped out, or do I try to do them after work, when I've already burned most of my energy for the day and would really prefer to just veg out in front of the TV? The answer is, I do the exercises when I can, in the morning with a cup of coffee, during the work day while sitting at my desk, and I do them in the evening while watching the cast of Grey's Anatomy struggle with their screwed-up lives. I don't do them as often as I should, but I do what I have time/energy for, and I think about what it will be like in the future, when and if it becomes my full-time job to try and take care of myself and possibly the geraniums hanging on the porch.

Neuropsychological impairment and the 3rd ventricle

In today's batch of MS-related abstracts from PubMed (which, by the way, you can get as an RSS feed, which I do) reports that the width of the brain's third ventricle, as measured by transcranial brain sonography, has a "good correlation" to cognitive impairment in MS patients. Here's a link to the abstract.

I've never had a transcranial brain sonograph, but I've got some relatively recent (6-9 months old) MRI images. I wonder what my third ventricle looks like- maybe I'll try to post a picture that shows my third ventricle. Unfortunately, the abstract doesn't really say whether it's larger-than-normal or smaller-than-normal ventricular width that correlates to cognitive impairment, so I'll probably just end up torturing myself unnecessarily, but hey, that's what science is all about, right?

Dazed and bemused

This morning, I was so pleased to have remembered my 9:00 am PT appointment and to have actually made it there on time, notwithstanding crappy traffic, that I stopped at Whole Paycheck and picked up a box of spicy tuna rolls. A couple hours later, though, I started feeling unusually sleepy and realized I'd skipped my morning meds: Provigil and Cymbalta. Drat. Too late to take the Provigil, I think, and no Cymbalta in my desk-drawer minipharmacy.

I really, really like the Provigil, and when I forget it, I remember how dopey, listless, and bummed I felt without it. The cash price for 200 mg Provigil tabs at Walgreens is $9 and change. So help me God, if I lose my insurance for some reason, I will take to sticking up liquor stores if I have to so I can get my fix.

Three awful weather words for May

"Near record highs."

More good news on Botox for bladder issues

New research shows Botox injections in the bladder detrusor remain effective after multiple injections. My urologist has mentioned this as an option a couple of times, and I'm thinking that I might give it a go some time in the not-so-distant future. My pee-pee problems are still pretty manageable, but I have noticed that things got a little worse over the last year or so. I'd say there's been a 25% decrease in the time between "I gotta go" and "I seem to be going." According to the study, participants receiving Botox got a mean maximal cystometric capacity increase of 144 ml. That's about half a beer, right?

Link to abstract.

Another go at physical therapy

I went back to the HMO physical therapy clinic on Wednesday afternoon, having been told that the HMO would not pay for a second visit to the University Hospital's PT clinic to complete an evaluation. The HMO's PT clinic is, of course, all the way on the other side of town from where we live, so it takes 30-45 minutes to get there, depending on traffic. It's at the edge of the sprawltastic land of shopping malls and big, big box retail, and it's a part of town that I just don't have any reason to go to.

I'd asked to see the therapist who had the most expertise with neurological rehab, but one of the first things out of J. the therapist's mouth was that next time, I'd be seeing a different PT, one who has more neuro experience, and, in fact, used to work at the University Hospital's PT clinic. Right off the bat, J. seemed to be aware that I'd seen someone at the University Hospital PT clinic, and that I'd wanted to go back. J. had read the notes from my visit to the other clinic, and said a few times that they hoped I'd give the HMO clinic a shot, but that if I thought after a few visits that I wasn't getting what I needed, they'd support my request to go back to the University Hopital's PT clinic. That seemed reasonable to me.

So we did some basic strength and balance testing. As at the U's clinic, J. decided I had some definite weaknesses in my legs: dorsiflexion of the feet, esp. on the left; hip abduction on both sides; and whatever you call it when, from a seated position, you rotate your leg and bring your left foot up towards your right knee. We also did some balance stuff, which was okay with my eyes open, but went to crap once I had to close my eyes.

I left the office after 45 minutes with three more appointments set up with V., the other therapist; a printout with some exercises to work on strength and balance; and a realization that things had gotten decidedly worse for me, strength and balance-wise, since my last visit to PT. I also got a free pass to the huge gym complex at the building where the HMO PT clinic is located. It's on the wrong side of town, but it has this neat donut-shaped pool with a strong current in it, and when I last went to PT, I really enjoyed bobbing up and down and walking around and around against the current. I'm thinking about dashing out there this afternoon.

Rituxan looks good in Phase II

Just read a Reuters story reporting on promising results of a Stage II clinical trial of Rituxan, a drug developed for treating lymphoma:

The number of lesions at weeks 12, 16, 20 and 24 was statistically far lower in the Rituxan group. At week 24, the total number of lesions was reduced by 91 percent -- to an average of 0.5 per patient in the Rituxan-treated group, compared with 5.5 lesions in the placebo arm of the trial.

"In addition, the proportion of patients with relapses over 24 weeks in the Rituxan-treated arm was 14.5 percent compared to 34.3 percent in the placebo arm," representing a 58 percent relative decrease, the drugmakers [Genentech and Biogen] said in a joint release.

Link.