Why Doesn't My Life Have a "Ctrl" Key?

I admit it. I have always been a control freak. If you're not doing it my way, you're doing it wrong. I know this is not an attractive aspect of my personality. I would have been a nightmare micromanager, had I ever really been a manager, which, fortunately, I was not. Even now, calendars and planners and to-do lists are my life, although the plans and tasks are for someone else to carry out. For people like me, MS is a total poke in the eye with a sharp stick.

It's not just the unpredictability of the disease, the symptoms that flare up unexpectedly, the complete inability to anticipate what I will, or will not, be able to do, even a few hours in advance. That's bad, but, for me, that's not the worst.

It's not even having someone else turn me over in bed, or adjust my clothes, or choose a bite of food for me. I am grateful that I have someone to do this for me -- I am I am I am! -- and I try not to complain unless it's causing physical pain. I try not to complain, even if it's not the way I would do it. And it never is. Even that is not the worst.

The worst is watching Scarecrow prepare Thanksgiving dinner.

I am an ungrateful wretch, I know, to even think it. Scarecrow has taken over cooking responsibilities like everything else he does for me: cheerfully and without complaint. If he resents the imposition, or the interruption, he never, ever, lets on. Unlike housework, which he doesn't like any better than I ever did, he finds cooking entertaining. He is looking forward to this.

Truth be told, it will be OK. It's just for the three of us -- no guests, no family, no distractions, no pressure. Although Scarecrow cooks with more enthusiasm than skill, he will manage well enough. I'm sure he won't leave the water running in the sink and flood the kitchen and dining room and laundry room again this year. He cooked Thanksgiving dinner last year, and it turned out fine. It's just one meal. We are fortunate to have it. Let's keep some perspective here. If he needs help, he will ask for it. If he doesn't ask, I will remain respectfully, gratefully, silent.

Even if he doesn't do it the way I would. He's doing it. That's good enough. That's plenty good enough.

It's Amazing What a Deadline Can Do

This is an anniversary, of sorts. The construction permit for the Remodeling Project That Wouldn't Die expires today. They tore into our house last December. It's been almost a year. Granted, we had a long list of things to fix, and they had to work around us, but still. I'm ready to be done. I'm tired of plaster dust. I'm tired of having plastic and cardboard taped to the floors. I'm tired of having our clothes on shelves in the dining room. I'm tired of the kind of utility bills you get when you have a sheet of plastic over a big hole in the wall in the dead of winter. And we're out of money. I'm so ready to be done.

The permit's imminent expiration seems to have elicited a flurry of activity. Sheetrock last Friday, mud on Saturday, paint on Monday. The electrician was at the house early this morning. We should have the inspector's signature on the permit by the end of the day. Then we're done, right?

Um. No.

There is still a bunch of stuff the inspector doesn't care about; finishing the trim and paint inside, getting the icky stuff off the floor of the office and finishing whatever we find underneath, painting the new siding outside, and, what may turn out to be the most challenging aspect of the whole project, coming up with a fence that will keep the whippet in. With the permit signed, there's a chance we'll revert to our previous leisurely pace of progress. In fact, realistically speaking, with the holidays and all, it's more than a chance. But we'll get there. Eventually. We're close. We're so close.

Cake, or Death?

When you were five or six, could you ever, ever, have imagined it would be possible to forget your own birthday? Back then, I started looking forward to it in February! We didn't usually have a party, but you got to choose what we had for dinner, and you were another year older, and it was a big deal!

It's my dad's birthday next week. Turning 89 is a big deal, especially since it didn't look like he was going to make it to 88.

It's not that I mind birthdays. I'm not birthday-phobic, or anything, and they're a lot better than the alternative. I just forgot.

Yesterday I had an appointment with the occupational therapist. It was mostly to figure out if I could get my insurance to pick up part of the cost of a shower chair, which they may or may not do. Since we were there, it was a chance to ask about some of the other questions the Red Queen has posed to us lately. I guess it's reassuring that there aren't any magic answers, that the solutions we've cobbled together are likely to be as good as anything the therapist can suggest. That's usually been the case. Still, it's worth asking. You never know. As bizarre as these problems are, we can't be the first ones to have them.

So I wasn't thinking about birthdays. It wasn't until I went to Facebook, and saw that Facebook had very thoughtfully reminded all my friends about my birthday. You'd think it could have reminded me as well, wouldn't you? So I could brace myself for it, sort of thing?

When we get home tonight, they should have the last of the sheetrock hung in the office and living room. A little mud and some paint, and it will start looking like a house again, instead of the inside of a barn. Not a moment too soon. Our building permit expires on Tuesday. I remember being incredulous when the contractor initially estimated that the construction phase of this project would take about six months. It's been almost a year. I'm ready to be done. As birthday presents go, this is a pretty good one.

Cake, or death? I think I'll go with the cake, thanks.

Why?

A theme that seems to turn up, sooner or later, in a lot of MS blogs is, "Why?"

Not "Why me?" as in, "Why not somebody else?", more like "What was it that caused me to get this stupid disease?" or, "Why has my disease course been so benign (or aggressive), and somebody else's so aggressive (or benign)?"

Since nobody knows what causes MS, it's hard not to wonder. Maybe it's just my talent for self-flagellation, but... was there something I did? or didn't do? Not that I purposely brought it on myself (really, let's not be stupid!), but did I somehow, inadvertently, do something wrong; make the wrong choice? Could I have spared myself some of this grief?

Some of the people who write about MS point to something in their past that they suspect kicked off their battle with the disease -- an event, an injury, an illness. I don't remember anything like that.

A genetic predisposition? Not much I can do about that.

Growing up the wrong gender, at the wrong latitude? Not much I can do about that, either.

Exposure to something in the environment? Probably. Who knows?

Would it have been different if they were putting people on disease-modifying drugs when I was first diagnosed? Would Betaseron, or Novantrone, or Tysabri have been more effective if I had started on them earlier? Did I choose the wrong drugs? Would Avonex or Rebif or Copaxone have worked better for me? Or did I just spare myself a lot of hassle and a lot of money?

I try not to go off on this wild goose chase. There aren't any answers. There maybe answers some day, and there will be plenty of time to beat myself up then, if it turns out beatings are in order. For now, it just makes me crazy. No need for that. I'm crazy enough.

Stormy in Seattle

Blustery, wet, gloomy, dark. When it's muddy outside, the dogs grow extra feet. I don't know how they do that.

It's not windy all that often in Seattle, so when it is, all the tree limbs that have been hanging on by a thread take the opportunity to land heavily on something inconvenient. Like our roof.

We awoke to a loud THUMP in the middle of the night last night, followed by another a short while later. Our old greyhound slept through it all. At 11 1/2, Ernie is getting a little hard of hearing. The ever-vigilant whippet heard it all right. He started shaking, and burrowed deeper under the covers. He's vigilant, but something of a coward. He doesn't like loud noises.

When, without canine backup, Scarecrow went to investigate, he didn't find any signs of mayhem inside the house. Since it was windy, we figured that one of the cottonwoods along the side of the house had dumped a limb onto our roof. Again. They're bad that way.

This morning Scarecrow did indeed find a limb on our roof. A really big one, several medium-big ones, and a whole bunch of little ones. Most of a fair-sized tree, looked like. And the hole they made when they landed. It's a small hole, and a couple of split shakes. They didn't do as much damage as they might have, but we'll still have to get it fixed.

They're saying it will be even windier tonight; gusts up to 50 miles an hour, they say. I think I'll hide under the blankets with the cowardly whippet.

Bob's Books and Adult Day Care Center

If I'm retired, why do I still go to work 8:30-5:30 M-F?

It's a little hard to explain, even to myself. It's the result of a twisted combination of unusual circumstances. The short it answer is: You do what you gotta do.

Here's the deal. Scarecrow works for a book distributor. It's a company of, maybe, six people, working in a warehouse full of books, with some offices along one wall. There are more offices than there are people. There is also an accessible bathroom. Scarecrow's employer (Bob) lets me use one of the empty offices, and his Internet connection, during the day. So I go in to work with Scarecrow. I read, pay bills, blog, watch movies, whatever. Scarecrow has an office upstairs. If I need anything (like help getting in and out of the bathroom), I send him an IM. When Scarecrow is finished for the day, we go home. So I go to work every day, even though it's not my work, and I don't actually do any.

Trying to untangle the unlikely chain of circumstances that evolved into this routine makes my head hurt.

It started when I stopped driving. Getting to work -- my work -- by public transportation was such a pain in the butt that I started working from home. I worked for a network software company, for Pete's sake. If I couldn't work from home, who could? That was OK as long as I could still get in and out of our tiny, disability-hostile bathroom by myself.

Then, couple of winters ago, our part of town lost power for about a week. (It was nine days, actually, but seemed longer.) I couldn't work from home. Since it was way too cold to sit around in a dark, unheated house, I went in to work with Scarecrow. I took my laptop, camped out in an empty office, and found that I could work as well from the warehouse as I could from home. Better, even, because of the accessible bathroom. Our power eventually came back on, but I kept going in to work with Scarecrow.

Since I retired, I still go in to work with Scarecrow. I just don't do any work.

My employer was amazing for letting me do this for as long as I did. I was lucky to have a job where it was possible. I was lucky Scarecrow had a job where it was possible. Scarecrow's employer was amazing for letting me do this, and for allowing Scarecrow the flexibility to help me out during the day. Each of these circumstances, taken alone, is kind of unlikely. Having them all occur together still has me shaking my head in amazement. It's not a solution you could ever plan. But you do what you gotta do, and that's what we did.

So it's Saturday. It still seems like a weekend to me!

Taily Ends

I spent the last few days dealing with what I hope will be the taily ends of several ongoing projects.

The nice lady from the insurance company called on Friday to tell me that my claim for long-term disability was approved. I'm so relieved. I need to remember to fax them my SSDI approval letter.

I finally signed up for a Skype phone number. I used to have a VoIP soft phone for work, which let me use my headset to call regular landline or mobile phones from my computer. Since I don't have my work phone anymore, and can't pick up a regular telephone handset or cell phone, I was pretty much incommunicado, phone-wise. It was nice while it lasted. Skype and Dragon Naturally Speaking don't play all that well together, but for the price I'm willing to put up with a little inconvenience.

We finally got the van in for service on Monday. For the first time since we bought it. Two and a half years ago. Considering we need this van to run pretty much forever, this is not the way to make that happen. It took us a while to figure out the logistics. The mechanic we've taken our cars to in the past is very good and relatively cheap, but very slow. We'd just drop the car off and let them keep it until they got done with it. Can't do it that way anymore. Most cars can't manage my power chair. Without that van, I'm stuck wherever I'm at. Fortunately, this time, it was a pretty quick service job. The van is still on warranty, so they're not motivated to find a lot wrong with it. They did the work while we waited. As car dealership waiting rooms go, it wasn't bad.

Yesterday we met with our contractor. Our construction permit, which was good for a year (!), expires before Thanksgiving, so we are motivated to get this project wrapped up. Also, we're running out of money. The good news is it looks like we'll be able to reuse the built-in bookshelves and desk we ripped out of the old office. It's much nicer than what we could afford to replace it, in addition to which I really hate throwing away perfectly good stuff. The material from the fence we had to rip out should be reusable as well. Not that the escape artist whippet pays much attention to the fence anyway.

Out of the Loop

They sprung mom from the hospital yesterday afternoon. As usual, it was my brother who took off work to do the fetching and carrying and running around. He's a great guy, my younger sibling. We're all lucky he lives close enough to help, and that he does it without complaint. It's not like I could be any help if I were there --  I'd be underfoot, more like -- but I'm sure as heck no help from 1200 miles away. In fact I'm just one more chore, because he's got to call me and tell me what's going on. This is not an MS thing. It's an Aging Parents Living Far Away thing. It's a problem for which I wish I  had a solution.

Anyway, she's doing OK. For now.

Since I can't do anything useful, I might as well do something fun. We're off to a UW volleyball game against Stanford. I'm still getting used to this whole spectator sport thing. It seems odd to critique the game played by these tall, slender, athletic people, when I myself could never play volleyball worth a darn. But for Pete's sake, what's up with all the service errors?

The Bright Side of Getting Laid Off

Technically, tomorrow is my last day of gainful employment. I've been using up unused sick time, accumulated vacation time, and short-term disability since the middle of June, but I was still technically an employee. After tomorrow, I won't be.

The benefits lady called to prepare me for the termination letter, so I wouldn't feel bad when I got it. She's nice that way. In talking about some of the paper that would need to be shuffled during this transition, she mentioned the American Recovery and Reinvestment Act subsidy for COBRA expenses. I told her I didn't think I was eligible. The deal is that ARRA subsidizes 60% of the cost of health insurance under COBRA if you're laid off. When the stimulus package was first passed, I checked with the MS Society to see if I would be eligible if I retired on disability. Reading the language in the act, it didn't look like I would be. The MS Society concurred.

The benefits lady said it was all rather confusing. She went off to check with a couple of people.

Well.

According to my employer, this is not a voluntary termination. I would continue to work if I could. They're laying me off because I can't. And since they're laying me off, I'm eligible for the COBRA subsidy.

Now, if I were a pissy kind of person, I might mention how it would have been nice to know this before I paid for Tuffy's insurance for fall quarter through UW, since it was less expensive than covering her on the unsubsidized COBRA. With the subsidy, COBRA would have been the better way to go. Fortunately, I'm sufficiently ecstatic about finding out that health insurance will cost 60% less than I had expected that I'm willing to let it go.

Takes a good bit of the sting out of getting laid off.

Gettin' Old Ain't For Wimps

My mom fell down a couple of brick steps on Monday afternoon.

She was puttering around in the garden. It was starting to get dark, she was getting tired, and her vision has deteriorated to the point where she's probably legally blind. She tripped and fell.

She's OK, for a given value of "OK." She didn't mention it to my brother when he talked to her on the phone Monday night, but by Tuesday morning she was in enough pain that she thought she'd better see a doctor. Fortunately, to everyone's relief and amazement, she didn't break anything. They're keeping her in the hospital for a couple of nights so they can give her some serious pain meds.

My mom turned 87 a couple of months ago. She's had assorted cardiac and respiratory problems, colon cancer that left her with a colostomy, an infection that cost her the tip of her index finger. Despite several eye surgeries, she can't see worth crap.

She and my dad, who will be 89 in a few weeks, still live in the same house they've lived in since I was a toddler. It's mostly all on one level, but elsewise not particularly accessible. They get some help with housecleaning and heavy lifting in the yard, and my niece lives in an apartment on the property, in exchange for checking in to make sure they're vertical before she leaves for work. They do everything else themselves. My dad still drives, which makes me crazy.

My point (I'm just figuring this out myself) is not that I'm worried about a potentially dangerous living situation, although I am. There are resources available to them, ways to make their home safer, and even, dare I mention it? other residence options they might consider. Believe me, we're working on it. We're working on it. Suggestions along these lines are met with fierce, if not to say rabid, if not to say furious, resistance. They're a couple of stubborn, cranky old... well, never mind. That's not my point.

My point is that gettin' old ain't for wimps. Old age is progressive too, you know. When I think of what my mom and dad face, every day, day in and day out, without complaint (much), I feel like a total whiner. I mean, they're tough! I don't think they make them like that anymore.

But guys, for criminy sake, put a handrail on those steps, willya?

Another Quiet Howloween

We got no trick-or-treaters on Halloween. Not one.

This year I can tell myself it was because we didn't have any lights on by the front door, because they're not wired up yet. But that doesn't explain why we didn't get any trick-or-treaters last year. Or the year before that. Or the year before that. In fact, since we moved into this house, we have never had any trick-or-treaters. Not one.

I admit we have kind of a steep driveway, but it's not that long, and there are two houses at the end of it. I wonder if they get any trick-or-treaters at the house next door? Or the house across the street? I'm trying not to take this personally. I won't let myself become bitter.

I guess we'll just have to eat this whole bag of Reese's Peanut Butter Cups. Just like last year. And the year before that. I thought about not buying treats, but if I did that, sure enough, this year we'd be Halloween Central. I couldn't take the chance, could I?

The weekend was not without excitement, however. Our ever-vigilant whippet saved us from a very scary doormat. It will never threaten us again.