Friday, July 29, 2005

Frist: Cell, yes.

Interesting to see that senator/physician Bill Frist has veered from the social-conservative script and spoken in favor of expanding federal funding for stem-cell research. I'm pleased, because Frist's support is important, and may lead to a change in federal policy on the issue. Nevertheless, it sure smells like an effort by a man with presidential ambitions to move toward the center. Will this redeem the man for his role in the Terry Schiavo circus? Probably not.

New research confirms: MS sucks

I compulsively query the Pub Med database for the latest on MS. Almost every day, really. A new study about the effect of stress on MS finds that
the relationship between life stress and relapse is complex, and is likely to depend on factors such as stressor chronicity, frequency, severity and type, and individual patient characteristics such as depression, health locus of control and coping strategy use. Little is known about how these factors, individually or in combination, are related to MS disease activity. Viral infections are also likely to precipitate relapse in MS, and significant life-stress may further enhance this relationship. The nature and strength of these interrelationships have strong clinical implications. MS patients are particularly vulnerable to a deteriorating cycle of stressful life events, illness episodes and disability. Timely multidisciplinary care interventions aimed at both minimizing psychological distress and physical symptoms may halt this downward reciprocal cycle.

As people with MS already know, the connection between MS and stress isn't just about what happens in the brain that might allow stress to trigger a relapse. It's about what happens in the life of an MS patient: stress triggers relapse and disability; disability triggers stressful life changes (job loss, relationship difficulties, depression); stress triggers another relapse and disability. It's a deteriorating cycle.

The tricky part is getting "timely multidisciplinary care interventions." I don't think there's a practitioner involved in my treatment who is tasked with coordinating multidisciplinary care. I don't think it's my primary care doc; I see him maybe once or twice a year. I think it's up to me: I'm the only person who's in a position to provide the information to each practitioner about what's going on with the others. I'm comfortable with this kind of self-advocacy, and I think I'm doing an okay job. But I don't have any medical expertise, and my ability to advocate for myself may be compromised at a time when I'm most in need of multi-disciplinary care interventions.

Whose job is this?

Thursday, July 28, 2005

Home improvement

For three years, we've been living in a 1960s ranch house in an older 'burb. The house has been subjected to a number of modifications over the years, some useful, and others unfortunate. One of the unfortunate ones is the three-season porch stuck "lean-to" style on the back side of the house, off the kitchen. Structurally, the thing's rotting badly, having been built below grade. Aesthetically, it cuts off most of the light and all of of the view on that side of the house. And it's just plain ugly.

We finally called up a remodeling contractor recommended by a coworker to discuss some options. We'd like to add a screen porch/deck thing, plus a bunch of windows. I'd got a bunch of books from the library, and scouted some architecture/design sites on the web, and had a head full of nifty ideas. The meeting went well: we talked about some ideas for adding a semi-covered deck area out back, and the contractor will do some sketches and some estimates.

The question is, how do we account for my present level of disability and the possibility that I'll become more disabled in the future? We mentioned to the contractor, in a general sort of way, that we were interested in trying to design something that would be relatively barrier-free. That seemed doable: eliminate the step-down to the porch, wide, doors, etc. But that's only part of the puzzle.

The fact is that if I were to stop working, we might not be able to afford the project. Heck, if I got laid up that badly, we'd need to make the bedroom and bathroom accessible, never mind adding something new. Even if we could afford it, I wonder if we'd be able to get a home equity loan without me working. Is it smart to add to our debt load now?

At the bottom of all this is the question of my continued participation in the work force. How much longer will I be working full-time? How do I decide? Will someone decide for me?

Tomorrow morning: gall bladder ultrasound.

Thursday, July 21, 2005

Ow, quit it. Ow, quit it. Ow, quit it.

I saw a pain specialist the other day. For the last four years or so, I've had this burning pain down the backs of my legs, and I've tried a lot of different things to get relief. So far, I haven't had much luck.

The pain doc says that MS pain is pretty common--maybe 40% of MS patients experience pain as a result of MS. It's not well understood, though, and medical science-types have really only been paying attention for the last ten years or so.

I've been through the first-line drugs: certain older antidepressants and anticovulsants. The antidepressants didn't really do anything for me, and the anticonvulsants made me feel so dopey that I quit 'em. For the last few years, I've been taking Neurontin, that Swiss Army Knife for the brain. I take quite a bit: one 600 mg pill every two or three hours during the day. It doesn't make me as dopey as old-fashioned carbamazepine did, but I'm still at about a 4 on the pain scale right now. I've tried non-drug stuff, too: I tried accupuncture, which didn't help, and I've been doing yoga, which does help.

Anyhow, I'm optimistic about the pain doc. He's a very nice guy, and seems highly regarded as a clinician. He's recommended a new drug: Cymbalta, a newish antidepressant. (What's with the name? The drug companies are apparently naming their products by opening the dictionary to a random page, pointing at a word, and adding a vowel. Cymbalta? Molari? Drywallo? Toiletta?) Apparently, it shows great promise for reducing neuropathic pain. He also noted that Marinol was a possibility. Unfortunately, my employer's pharmacy benefit manager seems to feel that Cymbalta should cost me more than the stuff I've already tried. I'm told I should send an appeal letter. That should be fun.

Monday, July 18, 2005

How to freak out your father-in-law

It was terribly hot over the weekend. Nevertheless, on Saturday morning my father-in-law and I set out to do a little fishing. Not much luck, but just enough to keep us in the boat until 11:00 am or so, by which time it had reached a sunny, windless 90 degrees. I could tell that my goose was getting cooked. By 9:30 or so, I was feeling pretty tippy. When we got to the landing, I couldn't walk, so Les had to fetch the car. While he was gone, I peed in my shorts.

Instead of pulling the boat onto the trailer from the dock, I got in the water, and pulled myself along the dock toward the shore, attempting to appear as though I was assisting in the get-out process, when, in fact, I was merely trying to move under my own power. I couldn't even get to the winch, so Les winched the boat onto the trailer. After he pulled the boat up on shore, I managed to buckle one of the transom straps, and then lurched my way up to the car, still dripping wet. There was an old guy at the landing watching the whole thing.

Les is an awfully nice father-in-law, and a stand-up guy in generaly. I wonder what the hell he must have been thinking as we drove back to the house. After stumbling past my mother-in-law and sister-in-law to the shower for a cool soak, I bounced back pretty quickly. That must have helped.

Last night, I talked about the incident with Caryn. I said, You know, if you ever feel like it, you have my permission to freak out. You have equal freaking out rights. She thanked me and said, basically, I don't care about your body, I love you for your mind. So I hope I can hang onto that.

On a completely unrelated topic, this morning, I wasted an hour trying to determine whether I was suffering from a gallbladder problem (gas, bloating, abdominal pain: yep, gallstones). But Dr. M. is out until tomorrow.

Friday, July 15, 2005

I hate the earth's sun

Check out this weekend's forecast. This is the sort of forecast that means I'll be spending the weekend indoors, preferably in the basement, because if I spend more than ten minutes outside I will lose all muscular coordination and collapse into a puddle of warm, quivering, white-guy-flavored Jell-o. Not that I don't have things to do indoors, but it just so happens that my in-laws will be in town this weekend and I usually feel the need to get out of the house from time to time when they're visiting. They're lovely people, very helpful and all that, but, well, you know.

Glad to see the weather will be beautiful on Monday.

Friday, July 08, 2005

Holiday weekend

I spent the weekend of the Fourth with my in-laws, lovely people who live way out at the western edge of Minnesota, two exits from South Dakota. Just outside of their little town is a nifty little state park called Blue Mounds, which is about the only interesting thing around for a hundred miles or so (unless you think Sioux Falls, SD is an interesting thing).

In the twelve or so years I've been making the trip out there, I've always looked forward to going out to the Mounds for a tramp or drive-through or whatever. In an area where it seems like every last acre is either cultivated or shat on by pigs, the Mounds are an oasis of trees and rocks and water and critters of various kinds. It used to be we'd go for a long walk: hopping from rock to rock in the valley where the stream widens out, swatting flies near the little lake, spying patches of cannabis growing on the hillside. The walks have gotten shorter in the last few years, maybe a chilly loop through the campground after Thanksgiving dinner.

This past weekend, the weather out there was drop-dead gorgeous. 82 degrees, sunny, no humidity, cool at night. I slept well, caught up on rest after a few weeks of extended work hours. I was feeling just good enough to do something stupid, like take the dog for a walk at the Mounds in the blazing sun.

I only went about 300 yards from the parking lot. Just after crossing the dyke at the end of the lake, there's a nice little bench, which is where I decided to turn around. By then, though, I was teetering pretty good. I'd dunked a white tee in the lake and put it back on, and wrapped a towel around my head. But by the time I got to crossing the dam on the way back, I worried that I might somehow slip and fall down the side.

There were some kids on the beach back by the parking lot, and I thought for sure they must have been watching me, thinking me a drunk or a lunatic. Crossing the dyke, I had to stop a few times in the course of about fifty yards, kneeling on the hot concrete next to my dog. She was looking anxious and confused, and I was getting worried and embarrassed. Would I need to call out for help?

After I made it across the dyke, I still had to go another hundred yards or so down the asphalt nature trail back to the car. My left leg had all but quit on me. This last bit took me maybe a half hour. I'd walk ten steps, and then stumble forward onto my hands on the hot asphalt. After a couple times, I started trying to cushion myself with the towel, which quickly got all full of gravel. I was afraid I would fall on top of the dog.

As I got closer, inching up an incline in the path, I could hear the people at the beach, kids and adults. I thought I heard them talking about me: What the hell's the deal with that guy? I had to pee, and took a leak in the middle of the nature trail, wizzing all over myself in the process. I got bit by several mosquitos.

When I finally made it to a patch of shady grass at the edge of the parking lot, I laid down on my back and stroked the dog. The car was all of 20 feet away, but after ten steps, I dropped to the ground again. Finally I made it to the car, propped myself against the tailgate, while and fished out my keys. I got the door open, but my arthritic dog wouldn't jump into the car. I sat back down on the ground. The dog laid down. After a rest, I tried, as gently as I could, to boost her into the back, and hobbled to the front seat. I turned on the car, and blasted the A/C.

The next day, I didn't feel too bad, but the following day (yesterday) and today I've been feeling pretty craptacular. When I get burnt out on my feet, I start using my back to hoist my legs along, so my lower back is angry with me. My shins are quite sore, too. Again, some kind of weird body mechanics that engage when I'm pooped. This is a familiar cycle for me: feeling better and then doing something that makes me feel like crap again.

When we left the in-laws, I grabbed the crude walking-stick-shaped gizmo I found in the garage. My father-in-law used to use it to prop up the tailgate on his minivan after the air-spring thing gave out. Now, it's in my living room. I grabbed it on my way out the door to let the dogs out this morning. Am I going to be taking it (or something slightly more refined) to work with me soon?

Friday, July 01, 2005

Unfortunately, Canada appears not to be an option for me

Like the second Bush election, the O'Connor retirement has me thinking about whether I'm living in the right country. The obvious option is Canada. It's close, friendly, and has the best national anthem around.

Could I emigrate to our neighbor to the north? Probably not. Two strikes against me:

1. I have MS.
I don't remember how this one turned out, but Canada raised a hoo-hah when it denied permanent residency to a woman with MS who was married to a Canuck. Canada's policy was to reject those for whom medical costs would exceed the average cost per Canuck.

2. I'm a lawyer.
I actually poked into Canadian immigration policies a while back, and found a sort of point system test for whether they'd let you in or not. Based on a number of factors, including education and bilinguality and other stuff, you'd get a certain number of points. A college education would be worth, say, 10 points, but a high school education would be worth, say, 5 points. If, after considering all of the factors, you scored a sufficient number of points, you could get in. They also considered your vocation. You could determine from a chart of various categories of occupations whether Canada wanted people who do what you do for a living. Up at the top: nurses, like 100 points or something. If you're a nurse, Canada wants you. Down at the bottom: lawyers and crack dealers, no fucking points, stay home. Can't say I blame them.

The mother of all battles

The news the Justice O'Connor is stepping down provoked a couple different reactions in me:

1. Oh shit. The crucial swing vote that has protected what's left of a woman's right to choose will be replaced with another anti-Roe Scalia, except even Scali-er (if that's possible).

2. Oh shit. Don't even fucking think of turning on the TV for at least a couple years.

Hostage tracker?

Okay, I only looked because Boing Boing said to, but I think the graphic accompanying the "Professional Device Hostage Tracking System" for sale at this wacky gadget shop is great. Other wacky gizmos are available for your amusement or professional espionage needs.