A Marmot Moment

Talk about What I Should've Said… I stewed for ridiculous length of time, trying to think of a title for my groundhog's day post. I didn't come up with what I was after until this morning, a day late and a dollar short, as usual. I guess I could've gone back and changed it, but that seems like cheating, somehow.

I do that a lot. I don't mean cheating; I mean not being able to find a word when I want to use it. Long before I had any other symptoms that were clearly MS-related, I had trouble coming up with words. I'd mentally construct a sentence intending to use a particular word, but when I got there, the word was nowhere to be found. It was the weirdest thing.

When I mentioned it to various neurologists, they'd look at me like I'd grown two heads. I've since learned that it's a fairly common cognitive problem among people with MS. So it's not just me.

You'd think it would've really cramped my style as a writer, but fortunately technical documentation for network software uses a pretty limited vocabulary. For anything else, I could usually come up with the word I was after eventually. It just may not happen until the next day. You skip that bit and come back to it later. It could be a bit awkward in conversation, but manageable otherwise. Not a huge problem, as problems go.

But it still pisses me off.

Signature Required

Scarecrow put our ballots in the mail a couple of days ago. All voting is by mail in Washington state, which is very convenient, although I admit I miss the ritual of going to the polls in person, carving out time before or after work, braving crappy November weather, crossing paths with friends and neighbors, waiting for a little stanchion to open up so I can step up and mark my ballot. With a mail-in ballot, Scarecrow can fill in the circles for me. Voting is easy. The tricky part is signing the outside envelope, to assure the powers that be that the enclosed ballot was submitted by a registered voter.

Yesterday we were notified that the Powers That Be are not too happy with the signature on my envelope.

I understand that. I'm not too happy with it, either. My hands first went numb in spring of 2002, and signing my name has been a problem for me ever since. Some of that time I could do it, kinda; the result just didn't look like my signature. Now I have trouble making a mark on paper, even if Scarecrow shoves a pen into my fist and moves a piece of paper underneath. It does not look like a signature. It does not even look much like an X.

If I ever gave any thought, before I became disabled, to the ways MS could make your life interesting (which, I admit, I never did), not being able to sign my name would not have wound up on my top 10 list. Or my top 25 list. Or probably my top 100 list. I don't think it would've ever occurred to me. But it's a real problem. It surely is.

Really, you wouldn't think it would be that hard. I can't be the first person with this problem. I just need a way for Scarecrow to write my name for me. (He has terrible handwriting, and although mine was never that great, the thought that anyone would take that signature for something I would've written causes me almost physical pain, but I'm willing to cope. That's how far I'd go.) There's the whole power of attorney thing, and making Scarecrow my attorney-in-fact makes sense, but it's kind of scary. It says I can no longer manage my own affairs, when really the thing I can't do is write my name on a piece of paper. It's not that I don't trust Scarecrow to act for me. I do, absolutely. It's just a control thing, I guess.

We're supposed to close on a refi here pretty soon. In case you've never had the pleasure, closing a mortgage loan entails signing your name 8267 times. I'm really looking forward to this.

Can We Just Not Talk about MS for a While?

Sometimes I go through a stretch when I just don't want to think about MS. As much as I care about the well-being of my blogger buddies (you know who you are), I don't want to read blogs about MS. It's not denial. I did my usual checkup with the neurologist, which was unremarkable, as usual. She wanted to do some lab stuff, just to make sure that, other than MS, I'm generally healthy. So I did that, and I am. (That whole concept never fails to crack me up, but there it is.) I took my power chair in to the shop a while ago to find out what's wrong with it, and taking it back tomorrow to get it fixed. I do what I have to do, MS-wise. I just don't want to give it anymore of my attention than that. And since much of my own blog is about MS, I don't much want to look at that, either. So I've been doing other stuff.

For one thing, while Tuffy was in southern California for a family wedding, I've been stalking her on Facebook. Creepy, I know, but fun seeing the pictures she and her cousins took while she was down there. She did the obligatory grand-parental visit, and the folks look good, considering. Dad's wearing his Toledo Mud Hens baseball cap. Where does he get these things? She's back now, says she had a blast, but was ready to come home.

I've been stalking dead people in Scarecrow's family, too. Like my family, they're mostly just regular folks, but fascinating for all that. You just never know what will turn up.

For one thing, there are some great names. Jehoshaphat Prindle. Perseverance Johnson. Ebenezer Dibble. And a good thing, too. With surnames like Bates or Whitman, it's easy to get lost in all of the Johns and Daniels and Sarahs. A name like Philo Dibble Bates gives you something to hang onto.

And then there are the Puritans. Finding that Scarecrow, militant atheist, is descended from a bunch of Puritans, is more than a little amusing. I first stumbled over this sometime last week. My ribs still hurt from laughing.

Richard Palgrave and Anne Hooker came to the Massachusetts Bay Colony from England in 1630, part of the first major European settlement in New England after Plymouth Colony, and part of John Winthrop's effort to establish the colony as a Puritan "city upon a hill."

Anne's brother Thomas Hooker was a prominent Puritan religious and colonial leader, who founded the Colony of Connecticut after dissenting with Puritan leaders in Massachusetts.

Richard and Anne are Scarecrow's 10th great-grandparents on his mother's side.

They are also the 14th great-grandparents of George W. Bush.



Hey, I read it on the web, so it must be true.

Last Chance

For the past week or so it seems like I've been inundated by e-mail inviting me to donate now and help end MS. Well, that would be cool, wouldn't it? Right now, they say, we are closer to ending MS than ever before! (The exclamation mark is theirs.) They couldn't say that if it weren't true, could they? The missive I got this morning says if I donate by midnight tonight I will help accelerate their efforts to end MS forever. Imagine that. I'd better hurry. Wouldn't want to miss the midnight deadline; maybe they stop accepting donations.

Psssh.

I don't mean to rag on the National Multiple Sclerosis Society. They do a lot of good stuff, and I've taken advantage of their services on several occasions over the years. I realize that if they want to accomplish anything, they have to raise money. I know that. Services cost money. Research costs big money. They obviously don't know that MS already costs me plenty. How could they? How could they know that every nickel I spend on this stupid disease feels like money down a rat hole? And that apparently bottomless rat hole, my friends, has taken a lot of my nickels.

Although it totally hacks me off, I can almost ignore the tone of their communications. Some marketing/PR person probably spent a long time on the wording of those solicitations. They were probably reviewed and scrutinized and tested on focus groups. They can't help it if I don't belong to their target audience. I never liked writing that stuff, I was never any good at it, and I really don't like reading it. It sets off my manipulation detectors. Exclamation marks make me suspicious.

I'm waiting for the point of this post to become apparent, and starting to think it's not gonna happen. I don't know why this makes me so cranky. It just does.

The MS Society wants me to donate?

Nah. I don't think so. I spend enough on MS already.

The Lung Vac

Seems like I've had a flurry of doctor appointments lately. Two weeks ago, I checked in with the rehab medicine guy. Since I was whining about being short of breath, he referred me to a guy in the pulmonary clinic. I expected it would be a total waste of everybody's time; they would listen to my chest, decide I didn't have pneumonia or asthma, and send me on my way. The rehab guy allowed as how that might be the case, but said he was referring me to somebody with a particular interest in neuromuscular disorders. I was pretty sure they wouldn't find anything wrong, and if they did, there wouldn't be anything they could do about it. But I went.

So last week I show up at the pulmonary clinic. After some puffing and blowing, they tell me my lung capacity is about 50% of normal, and ask if I have any trouble coughing. Well, yeah, as it happens, I do. Giving in to my penchant for overstatement (hyperbole is the best thing ever!), I tell them I'm afraid if I ever get a respiratory infection, I'm toast. So they make me an appointment with a respiratory therapist.

So on Monday I see the respiratory therapist. After some more puffing and blowing, he tells me if I ever get a respiratory infection, I'm toast. Somehow it's more disquieting, coming from him. He gives me a thing that looks like a purple balloon with a hose, and takes Scarecrow and me through some exercises that he describes as range of motion for the lungs. Then he pulls up a machine that is basically a vacuum cleaner with a mask attached. It blows air into your lungs, then sucks it out. It feels... weird. It sounds like, well, like a vacuum cleaner.

The dogs are going to hate this.

World MS Day

Second annual.

woot

Look, I am indebted to organizations that raise awareness of MS, and raise money for research, and all that. They do good work. I appreciate it. I do. I asked my local MS Society chapter for help on a couple of occasions, and got it. A couple of years ago I took advantage of an aquatics program they sponsored at the local YMCA. They sent me information a couple of times, and I appreciate the resources they make available through their web site. I owe them. I know I do.

I guess I feel like I should be more of a booster. It just seems that in the great majority of my interactions with MS organizations, they are asking me for money. There's nothing wrong with that. I know fundraising doesn't just happen. If you want to raise money, you have to ask for it.

Please forgive me if I can't get more excited about the second annual world MS day. I just feel like MS has already taken everything I had to give.

The Done Thing

Being quadriplegic creates some unexpectedly perplexing questions of etiquette. I never anticipated being quadriplegic, of course, but even if I had, I could never have anticipated how awkward it would make the most basic social interactions.

Like shaking hands.

I'm always momentarily horrified when I see someone approaching me with their hand outstretched. I don't want to be unfriendly or rude, but no way can I extend my arm and manage a normal handshake. Even a fist bump is beyond me. My usual response is an awkward smile and a shrug, as I mumble something about how "I can't... ", leaving the other person standing there with their hand stuck out, looking awkward.

I visited the Rehab Medicine Dr. the other day. You've got to figure he sees more than his share of quadriplegics, so he must know what to do in this situation, right? His solution was to walk up, reach into my lap, and shake my fist. It felt kind of... weird... but that's one approach, I guess. I can't really see sticking out my fist as best I can and expecting anyone else to know what to do with it. I wouldn't, if it was me.

That was probably the most interesting thing about the visit with the Rehab Medicine guy. I didn't really expect him to have much to offer, but I guess it's worth checking in from time to time. He's a really nice guy, and he is good about working through my laundry list of symptoms and making suggestions. Mostly he told me to do what I  already know I need to do: arrange for backup/respite care, get a lift, make sure I periodically shift my weight off of proto-pressure sores, change the control on my wheelchair so I can get out of the house. Somehow, hearing someone else say it does not make it seem less overwhelming. I always hope that one of these appointments will just fix everything, and even though I know this is an unreasonable expectation, I'm always mildly disappointed when it doesn't.

Still, the Rehab Medicine guy spent an hour with us ("us" being me and Scarecrow, not the Royal "us") and gave it his best shot. On the way out, he reached in my lap and shook my fist again. It still felt... weird.

Some people, when they realize I'm not going to be able to do anything with their outstretched hand, manage to gracefully resolve the situation by patting me on the shoulder. That's OK. It's actually nice.

Spring Fever

When the weather gets like this, it's probably just as well I no longer have a day job, as I wouldn't be getting anything done. Blue sky, sunshine, warm(ish). Flowering plums. I love flowering plums -- they look like cotton candy trees. Crocuses. Forsythia. Azaleas. Pink! Yellow! Purple! When the first flowering plants are in bloom against a background of evergreens and the sun comes out of the clouds, this place is spectacular.

Spring fever.

Even if spring isn't officially here for another two and a half weeks, it's starting to look like spring to me. As ailments go, spring fever is one I'm glad to have. I might only get it for part of the day; a weather phenomenon Seattleites colloquially call a "sun break". I get it every year, but this is the first year I don't feel guilty about coming down with it because there's nothing else I really should be doing.

I could use a serious case of spring fever right about now. My arms and hands have been even more useless than usual lately. I tried to sign some papers the other day, and found that even the ridiculous scribble I've been using for a signature is beyond me now. We need to arrange for some backup/respite care, so Scarecrow and I aren't joined at the hip 24/7. Despite the lateral support in the back rest of my power chair, it's getting harder and harder to sit up straight. I can't control the chair with the joystick anymore, so I don't go anywhere. And it's getting hard to take a deep breath. Stuff I don't want to think about, and chores I don't want to do.

I don't know if spring fever is on anybody's list of treatments for MS, but it ought to be.

Fighting Sleep, and Losing

How embarrassing.

Lately I keep catching myself dozing off during the day. No, wait, I don't catch myself dozing off; I catch myself waking up after I obviously dozed off, head nodding, jaw sagging, oh, sorry, was I snoring? It's bad enough when I'm by myself, just sitting with my laptop in the afternoon. It's mortifying when I'm with Scarecrow and Tuffy in the evening, reading a book or watching a movie. The other evening we were watching a Dr. Who DVD, the final episode of the season, and I woke up at the very end with no idea what happened. Audio books are a disaster. At least with a regular  book, if you fall asleep, you can pick up at the page where you left off. If you fall asleep when you're listening to an audio book, it just keeps right on going and figuring out where you were when you fell asleep is a real pain.

It's such a stereotypically old lady thing to do. I remember being impatient with my grandmother, or my dad, or my mom, when they'd fall asleep watching TV. Scarecrow's dad would fall asleep in the middle of a conversation, practically.

Digression: Scarecrow's dad used to teach at a junior college. When he had an evening class, it was his habit to curl up underneath his desk for a nap in the afternoon. Seriously. Scarecrow's dad could take a nap anywhere. Anyway, on one occasion, an instructor with whom he shared the office was meeting with a prospective student and his parents. As they discussed the merits of the program, they heard an assortment of waking-up noises and Scarecrow's dad emerged from underneath the desk. I love that story. End of digression.

I was such a little snot. There is painful poetic justice in finding myself doing the same thing that once provoked my scorn and ridicule.

It could be an MS thing. Lately I've been really stiff. Any movement entails serious isometrics. It's hard work, and it makes me tired. Maybe it's that. Or maybe it's just getting old. Either way, I don't like it. So, should I try to do something about it? If so, what?

Really, other than the old lady stereotype, what's the harm in falling asleep during the day? It's not like there's anything I particularly need to get done. Why do I need to stay awake, anyway? Mostly, during the day, I'm just trying to find ways to entertain myself. If I'm tired, maybe I should just sleep. That much less time to try and fill. Choosing this option seems kind of nutty, but I'm not sure I know why.

OK, if I don't want to doze off in my chair, what are my options?

The obvious thing to try would be to get more sleep, or better sleep, at night. My schedule here is pretty much tied to Scarecrow's since he has to dump me into bed at night, turn me over from time to time, and haul me out in the morning. I suppose we could give this some thought.

I could explore chemical options. I already take drugs for fatigue, stiffness, nerve pain, depression, and bladder control. After much fiddling, we've got the drugs and dosages balanced so that everything kind of works. Do I want to risk bringing down this house of cards to stay awake through Dr. Who?

Well, it was the last episode of season.

Timing Is Everything

Those annoying highly-effective people tell us to arrange our schedule so we take on our most demanding tasks at the time of day when we're most capable. That always sounded like a good idea to me. There are tasks that require focus and attention, and those I can do on autopilot. Of course, when I had a day job, I often wound up spending my most effective time of day sitting in a meeting, or working on a task I could do on autopilot, its priority inappropriately elevated by an imminent deadline. Still, ordering my to-do list by the time of day I could most effectively accomplish a particular task always sounded like a really good idea, even if I never actually managed to do it.

These days, the time of day determines not so much whether I can do a task well, but whether I can manage it at all. You'd think I'd get it by now. Things I can do easily (relatively speaking) mid-morning will be difficult or impossible in the late afternoon. If I put something off to later in the day, even if I really really really mean to get to it, it ain't gonna happen.

In the middle of the morning, most days, the pharmaceutical soup that determines my outlook and energy level predictably has me feeling as cheerful and positive as I'm likely to get. My physical function is as good as it's likely to be all day. Living in the moment doesn't seem so bad. Late afternoon of the same day can be a very bad place. I'm probably stiff and surly and everything is way too hard and I'm f&%king tired of this sh!t. This is not a moment in which I want to spend a whole lot of time, thankyouverymuch.

At a good time of the morning on a good day, when I'm full of energy and purpose and everything seems relatively easy, I still put off tasks to the afternoon even though I know, rationally, that when the time comes, I probably won't be able to do them. I just can't seem to not do that.

The closest I can come to adapting to the drastic difference in what I can do between the good part and bad part of the day is to consciously set my status by the best part of the best time of day. I need to take note of a moment during the day when life is good and I can do stuff and I'm glad to be alive. I need to be able to go back to that moment during the part of the day when things can look very dark and it can be hard to remember that life is good and I'm glad to be alive.

This all sounds embarrassingly new-agey, not to mention whiny and self indulgent, and I'm not sure what my point was, if I had one. And Dragon Naturally Speaking just crashed. Twice. So I guess I'm done.

Let This Be a Lesson

When my brother calls and leaves voicemail messages on two different phones, it makes me anxious. My parents are in their late 80s, with their share of health problems. My brother and his three adult kids live close enough to help out, and they do. If something bad happened to my parents, I would hear it from him first.

So when he called this morning and left messages on two phones, I figured either my dad is in the hospital again, or my mother is driving him crazy. This time, it's option two.

My mother is a very angry woman. I guess she always has been, although I didn't realize that when I was growing up. In her defense, she has had to deal with some crappy stuff the last few years. She underwent the colon cancer torture -- chemo, radiation, surgery, perhaps not in that order. Her vision has deteriorated to the point where she's virtually blind. My dad's GI problems landed him in intensive care for almost a month. Although his recovery has been remarkable, since no one expected him to live, it has been slow.

I don't know what they expected their life would be like at this age, but I'm sure this isn't it. They live in the house they bought in, I don't know, maybe 1953? At the time it was in the middle of nowhere, but now it's the 'burbs. They have always been fiercely independent, accustomed to jumping in the car and going where they want, when they want. Mom can't drive at all now, and dad shouldn't. They live right off PCH in Southern California. This is no place for an 89-year-old man with dodgy vision and reflexes to be driving, even if he has been driving it for the last 50-some years. There is not much public transportation where they live, and let's face it, even if there were, it's never as convenient as grabbing the keys and heading out the door. My brother, who has a day job by the way, has made it clear that he will happily drop everything and take them where they need to go, if they would only ask -- but they need to ask a day in advance. I don't know if transportation issues are really the most critical thing for them, or just the most obvious target, but that's what we usually hear about. Miscommunication about transportation to a doctor's appointment, when it's often not entirely clear who misunderstood whom. Some absolutely essential item forgotten on the previous day's trip to the grocery store, that can't possibly wait for my brother to bring it by after work. It's always something.

Suggestions that this is just the way it is, and it's never going to go back to the way it was before, just make them mad. That's OK. I don't see the sense in it, but if they want to be mad about things they can't change, it's OK. But they take it out on the people who are trying to help them. That's not OK.

Two things have come out of this. The first is that I'm about to have the "You Think You've Got It Bad" chat with my mother, and I'm going to win. I've never talked about my MS symptoms with my parents because, well, what would be the point? They can't fix them, it would just make them feel bad, and they have their own health problems to deal with. But Ma, if you think you are put upon because you can't grab the car keys and go get your nails done, imagine what it's like to sit at your desk with a piece of paper in front of you, and not be able to move it. My brother is doing the best he can to come up with solutions that will work for you. Don't beat him up because he can't turn back the clock.

The other thing is that I must remember not to take out my frustrations on the people who help me. I understand the temptation to do this, believe me I do. My mom is not a bad person, but she is setting me a very ugly example.

If MS Is A Gift, Where Do I Go To Return It?

My mom always told me I had a bad attitude.

When I was a kid I never understood what she meant by that, but now I not only see what she was saying, I'm starting to think she may have been right. Particularly around the holidays, so many people seemed to be recounting the blessings conferred by MS, or some other chronic condition. It makes them a better person, brings them closer to God, deepens their appreciation for life, family, whatever. I suspect I should find these essays inspirational and thought-provoking. I find them thought-provoking, all right. They provoke me to wonder, "Are you f%#king nuts?"

I do not see anything good about having MS. Nothing. I do not feel blessed in any way. I do not see it as an opportunity to become a better person. I'm perplexed by the general assumption that, when you have a chronic disease, it's important to maintain a positive attitude. Why is that? Can somebody point me to some real, convincing evidence that positive thinking makes a rat's patoot worth of difference, to anything?

I'm not talking about wallowing in self-pity, here, making yourself and everyone around you miserable. I don't see any point in that, either (although I admit I do it sometimes. I try not to wallow, but sometimes I put my feet in and swish them around a little). But isn't it positive enough to take one day at a time, enjoy what you can, appreciate the good stuff, and just slog through the rest?

Projecting a relentlessly positive attitude is hard work. I know. I do it all the time. Most people who ask me how I am don't really want to know, not really. "I'm fine..." I say, "I'm good...", and we talk about something else. I wonder if forcing yourself to be artificially positive might even have a negative effect. I find it very stressful to pretend I'm OK when I'm not.

Inspirational affirmations make me itch. "Life isn't about waiting for the storm to pass; it's about learning to dance in the rain." "When life hands out lemons, squeeze out a smile."

"I have MS, MS does not have me."

I admit I'm being deliberately obtuse, here. I realize that the people who say this probably just mean they are determined to maintain a life outside of MS. They will not let the disease define who they are. That's all good. I try to do it myself. But every time I see this, what I hear is "If I fight hard enough, I can beat MS. I can keep it from changing my life."

Maybe you can. I hope you do. But I couldn't. MS has totally kicked my sorry butt. Maybe I should have fought harder. Maybe I wasn't positive enough.


I'm pretty sure MS has not made me a better person. When I finally had to retire from work, one of my coworkers told me, "You've been an inspiration to all of us as we see your courage and grace." It was such a nice thing to say, I only wish it were true. Have you ever noticed that obituaries always talk about fighting a brave battle against disease? I'm afraid mine will have to say I was a pitiful spectacle, a total cringing whining craven coward. I'm not being brave. If there were another option, I would take it. I'm just not aware of any.

I've even had people tell me "You're a survivor." I guess I am. We all are, aren't we? Until we aren't. Then we're dead. To borrow a headline from The Onion, "Despite Best Efforts of US Medical Profession, Death Rate Remains Obstinately High at 100%." Does being a survivor, when the only alternative is being dead, make me a better person? I'm not seeing it.

Maybe it's just my bad attitude.

-- Mme. Crabbypants

A Visit With The Rehab Guy

We met with the rehab guy the other day about new ways to drive my power chair. In our latest encounter with the Red Queen, I'm finding I no longer have the strength or range of motion in my hands and arms to use a fairly standard, garden-variety joystick to get where I want to go. The minor modifications we made six months ago now endanger entire city blocks, putting large numbers of innocent pedestrians at risk. It's kind of scary for all concerned.

Anyway, this guy (Let's call him Mike. Because that's his name.) is with a new durable medical equipment provider. This has got to be a good thing, because the company I've been dealing with up to now, the one from whom I purchased the chair originally and the only one in the area I was aware of, is incredibly horrible. Like, epic horrible. Amazingly, frustratingly, expensively, infuriatingly, I-don't-know-how-you-guys-stay-in-business horrible. Like, every interaction I've had with this company, and there have unfortunately been many over the past several years, has turned into a many-phone-call, multi-appointment comedy of errors. Even something that should be as straightforward as replacing the battery on my power chair. Really. If I had known there was anyone else within 50 miles, they'd have had my business before now. Anyway. The physical therapist says Mike is pretty good. Between her recommendation, and the fact that he could hardly be worse than my old provider, it was definitely worth a try.

We had expected to talk about two possible solutions:

• Some kind of modification to the size, shape, or position of the joystick control, which we expected to be more-or-less affordable but would, the way things are going, probably have us racing the Red Queen again in a few months
• A new control that I would operate with my chin or head, which I could probably use for longer but would probably cost more.
  

That's about what he told us, but instead of more-or-less affordable and expensive options, turns out they're both expensive options. Why am I not surprised. My insurance would pick up most of it, but even the co-pay would be a pretty good chunk of change.

We'll have to think about it. I know we'll have to switch to something else before too long. For now, we've come up with a homegrown jury-rig to my current joystick control that's working pretty well. For now, that will do.

I was feeling pretty good about having evaded, at least temporarily, durable medical equipment hell.

At lunch today, my footrest came off.

Sigh.

Taking Inventory

They're taking inventory today in the "Bob's Books" department of Bob's Books and Adult Day Care Center. Everybody is busy in the warehouse. They brought in pizza for lunch, and got enough for the "Day Care Center" department too, which is nice because it's just me, and I'm not helping with inventory.

I guess with the end of the year and all it's a good time to take some sort of inventory, a summing-up of the year just past. That's what newspapers (remember them?) and magazines and TV and radio do this time of year; seems like there's no getting away from it. But me, I'd really rather not just now. I had a couple of really dark days right after solstice (yeah I know -- everybody did) and I feel like I'm still climbing back. For people with progressive disease, reflecting over the previous year and anticipating the coming year is something you want to be very careful about. A year ago I could do a lot of things I can no longer do. By the end of next year I'm unlikely to be able to do everything I can do now. I don't think I'm being negative or defeatist or giving up, or failing to be hopeful or positive or tough or determined or inspiring or any of that. It's a progressive disease. That's how it works. I'm just sayin'. At this point, for me, a good day is one that's not a whole lot worse than the day before. A good year would be one that's not a whole lot worse than the last. I'll plan for the future as best I can, but getting through today is about all I can manage. If I can do that, we're good. One day at a time.

So, as days go, yesterday was a pretty good one. And old friend from southern California was in town visiting her sister and brother-in-law, and they all came by for a visit. She brought Lucy the golden retriever, which Ernie and Bareit thought was a very fine thing. Tuffy kindly  baked us a batch of brownies. I think we managed to save her a couple.

Red Queen Redux

Yesterday I had an appointment with the physical therapist. I've worked with this woman for years, checking in with her every time the Red Queen challenges me to another race. She's not only very good at what she does (the therapist, I mean, not the Red Queen, who is also very good at what she does, which is why I need to see the therapist), she's a great person as well. I like her a lot.

The reason for this visit is that, once again, I'm looking for another way to control my power chair. I was in for the same problem just six months ago, but I've lost so much function in my arms and hands since then that the solution we cobbled together is already not working for me anymore. We talked about solutions that I could probably afford, which might work for a little while. And we talked about options that might provide a longer-term fix, but would probably exceed the maximum my insurance will pay for durable medical equipment. All of which assumes I can get my COBRA continuation coverage set up, which is a whole 'nother rather tiresome story. The upshot of all this is that we will talk to a DME provider, find out how this might work, and what it might cost. And I'll talk to the COBRA administrator to get the insurance thing straightened out. You know, dealing with a disability is bad enough, but doing what you have to do to be able to deal with the disability is a real pain in the butt!

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.

MS Story -- Years 17 - whenever

Picking up where I left off:

In spring 2004 my hands were numb, but even two years after the exacerbation that took them out they still seemed to be improving at a rate so gradual I wondered if it wasn't just wishful thinking. So, maybe still getting better. At least, not getting worse.

As we began to get the occasional "sun break" (a weather phenomenon apparently unique to the Pacific Northwest), a friend from work and I started going for a walk at lunch. One otherwise unremarkable day, we were coming back from an otherwise unremarkable walk when my right knee began hyperextending every time I put weight on it. Made for a very awkward gait. I glumphed back to my office. After sitting for a bit, I was OK again.

That was the top of the ski jump. Walking gradually, steadily got harder and harder. At first the problem only cropped up when I tried to walk a significant distance. I started carrying a very cool hiking stick, one with which I had hiked many pre-impairment miles, in case I had trouble getting back where I started. On one memorably humiliating occasion I was crossing a busy intersection near the office with a couple of coworkers when I lost my balance and fell. It took both of them to get my sorry butt out of the street. Can't like it.

At some point along in here, I started having real problems with fatigue. Any physical activity was just such hard work. The harder I tried, the stiffer I got. Life as isometrics.

I tried Betaseron. After every shot, I felt pretty much like crap up to about four hours before it was time for the next shot. And it wasn't making any difference. The neurologist suggested, in the nicest possible way, that it might have been more effective and had fewer side effects if I had started it earlier. Maybe so. At this point, saying I may have brought this on myself may -- or may not -- be true, but it's not particularly helpful.

I tried Novantrone. The side effects weren't too bad, the bright blue urine was kind of cool, but you've got to wonder about a drug the nurse has to wear a hazmat suit in order to administer. And it wasn't making any difference.

I tried Tysabri. No help there, either.

After a while, even standing up became an adventure. I'd be standing there, minding my own business, not doing anything in particular, and suddenly realize "Oh shit. I'm falling again." Scarecrow and Tuffy learned that a sudden loud crash no longer meant the dogs were doing something inadvisable. Now it was at least equally likely they'd need to haul me up off the floor. And repair whatever I broke on my way down.

I went from hiking stick, to forearm crutches, to a manual wheelchair with a power scooter for longer distances.

That worked as long as I could still move my hands and arms. My hands were numb, but I could still use them. Kind of. I was already so clumsy that I really don't remember when the sensory problem also became a mobility problem. Whenever it started, progression was gradual but steady. Two years ago I finally gave in to the physical therapist, who had been trying for years to get me into a power chair. Which is another whole story in itself -- one for another time.

And that's where I'm at. I can't stand or walk, I have very limited use of my arms, not much use of my hands. Fatigue is a problem. I think my cognitive processes are about the same as they ever were, which may not be saying a great deal.

So, OK. That's my MS story. Can I go back to something fun now?

Although I'm not much of a fan of spectator sports, I like Pac-10 volleyball. We might go to the UW game tonight. They're playing UCLA. It should be a good game. I'm a UCLA alum and Tuffy goes to UW, so I don't really care who wins. Or maybe we'll go tomorrow night, when they play USC. I always like to see somebody beat USC. And I'm looking forward to spending some quality time this weekend with a stack of library books. I'm part way through Narrow Dog to Carcassonne by Terry Darlington. Jim the whippet -- the narrow dog in the title -- is clearly Bareit's alter ego.

MS Story -- Years 15 - 16

Picking up where I left off, by the spring of 2002 I had had MS for at least 14 years without anything much in the way of exacerbations and no real ongoing symptoms. I had the occasional transitory sensory weirdness -- part of my tongue would seem a little bit numb, or a patch on my right forearm would feel sunburnt (in winter? in Seattle?). When I described the tongue thing to my dentist, he looked at me like I'd grown two heads. After that, I referred to these little things as my "stupid symptom of the week", and tended to keep them to myself.

Then, over the course of a couple-three weeks, I went numb from about the waist up. I could move my arms and hands just fine, I just couldn't feel anything. I couldn't tell if my fist was open or closed unless I was looking at it. Let me tell you, washing your hair is a very strange experience if you can't feel either your hands or the back of your head. Picking things up was awkward, writing with a pen or pencil was a joke, and using a keyboard was totally in the can.

I did a three day hit of steroids, which tasted yucky and turned my face red, but had no other noticeable effect.

The numbness partially remitted at a steady but glacial rate over the next two years, with no new exacerbations. I talked to the neurologist about starting one of the disease-modifying drugs, but decided not to at that point. (Not a decision made lightly, but a topic for another time.) I could use a pencil, kind of; I could use the keyboard, kind of; I could play music as well as I ever did, which is not saying a great deal. I found it hard to memorize new music, but I always did. I could still understand the bizarre things the programmers told me their software was doing. I'm not sure what that says about my cognitive processes, but it kept food on the table.

So I'm 16 years into this thing, and my hands are kind of numb. It's more disabling than you'd think, but still, not too bad, considering.

MS Story -- Years 0 - 14

Since the first thing I do when I stumble across a new MS blog is go looking for their MS back story, it only seems fair that I reciprocate by putting up my own. Here it is.

In fall of 1988, I noticed that my vision in one eye was kind of not-right, like I was looking through a piece of unevenly smoked glass. Not bad, just curious. Since I hadn't had my eyes checked in forever I went to see an opthalmologist. Dr. Mordis. No shit. Med school must've been hell for this guy. Anyway, I got the usual routine, and something I've since learned is a visual field test. He says I've got optic neuritis, which means "something wrong with the optic nerve." They don't know what causes it, he says, but it usually goes away on its own. Good enough for me. It did, so I didn't give it another thought.

For seven years.

In 1995 we arrived in Seattle after driving from Lansing, Michigan. I walked the dogs, grabbed a book, and headed for the hotel hot tub, but after a few minutes I was having trouble seeing the print. Weird. It was just like that time I had optic neuritis. After I got out and cooled off it went away, so I didn't give it another thought. (Yeah, I know. I know now. I didn't know then.)

In fall of 1996, I went to an oral surgeon to have some wisdom teeth removed. The pre-op questionnaire asked about history of neurological weirdness, so I checked optic neuritis. The surgeon asked when it had last occurred. I told him I had it right then. Since it was barely noticeable and would go away on its own, I hadn't thought to do anything about it. He suggested I have it checked out. In the hope that a neurologist would provide me with an excuse not to yank my wisdom teeth, I made an appointment.

I also, finally, googled "optic neuritis." Imagine my amazement, confusion, and dismay to find it generally buried in a discussion of multiple sclerosis. WTF?

I remember going home and working on Tuffy's halloween costume. Aladdin was big that year, and she dressed up as Jasmine. It was grab-the-insulin cute.

What with appointments with a neurologist, an ophthalmologist, scheduling an MRI, and back to the neurologist again, it was spring of 1997 before I finally got a diagnosis. The neurologist said it was "a textbook case of MS", whatever that is. And he saw no reason not to have the wisdom teeth out.

And that was pretty much it, up to the spring of 2002. Two incidents that I hesitate to call exacerbations, because they were barely noticeable. No disease-modifying drugs -- I don't think they were even in clinical trials at the beginning of the story. The first 14 years were a piece of cake. If the first 10 years is predictive of the course your MS will take, I'm lookin' good.

Is That Me?

I don't spend a lot of time in front of a mirror. In fact, I don't spend any time in front of a mirror. All the mirrors in my house are at standing-up height, and I'm always sitting down. This is not an accident, or a failure of planning. I like it that way. It's no inconvenience; I don't wear makeup, I can't brush my own hair anymore, and I don't need to look in a mirror when I'm brushing my teeth. I can go for long periods without seeing my reflection.

So when I do happen to catch a glimpse of myself in the mirror, I'm always surprised. It takes me a moment to realize that I'm looking at myself. I'm neither particularly gorgeous, nor particularly hideous. Kind of average-looking, and I'm okay with that. The person in the mirror wears her surprisingly gray hair tied at the back of her neck, a style that does not particularly suit her long, narrow face.(Scarecrow willingly brushes my hair and ties it out of my way, but styling and blow drying would be asking a bit much.) She could stand to moisturize more. Her hands look particularly crippy -- bony and wasted, clenched into fists, covered with age-spotted elephant hide. They don't look like they're good for much. (They aren't. But I guess a little hand lotion wouldn't hurt, either.) And that chair! Or is it a tank? (It's a tank. A Permobile C300 power chair. I'm sitting on it, so I guess I forget what it looks like. But hey, it's basic black.) She looks like she was poured into it. Why doesn't she sit up a little straighter?

It must be like going to a high school reunion, and finding that everyone else sent their parents. (My 40th would be this year, if they were having one, which they aren't, and I were going, which I wouldn't.) One of my best buddies when I was a kid sent me a recent picture of herself. I was gobsmacked. She looks just like her mom.

It's kind of like that. Every time I look in a mirror. The crippy hands and the power chair I can blame on MS. I think the gray hair and general decrepitude is just gettin' old. I guess I could spend more time on my appearance (Correction: I could have Scarecrow spent more time on my appearance.) But I really don't give it much thought. It's not a problem as long as I don't look in a mirror.

Just, please, don't tell me I look like my mom.

Scarecrow just stuck his head in to tell me we have an appointment to apply for SSDI next Friday afternoon. I'm so looking forward to this. Really. It'll be fun.