Monkey Mitts

I spent some time over the last couple of days trying to figure out what we should do about emergency or respite care. Right now, Scarecrow does it all, everything, all the time, 24/7. We have no backup. And he has a full-time job. T'ain't right.

We should have done it long ago, I know. Although I admit I can be stubborn and selfish, I'm not the one dragging my feet on this. It's not me insisting that I don't want help from anyone else. If anything, Scarecrow has been more reluctant than I am to hire outside help. Still, we've got to do it. If something happens to him, I'm screwed.

OK, so I'm looking up some resources suggested by the MS Society. There are all kinds of places called Helping Hands Somethingorother, so as usual I get distracted by the bizarre things a web search turns up, not least of which is a place where the helping hands belong to capuchin monkeys.

Really? Monkeys as service animals?

Granted, they're small, they live a long time, they're intelligent (whatever that means), they have more-or-less opposable thumbs. Their dexterity means they can perform tasks that the most willing dog simply can't manage. They're cuddly and cute. When they're young.

But no, not for me, no thanks. Even tame monkeys are still wild animals. As adults, they're temperamental and unpredictable. They bite. (Monkeys trained as service animals frequently have some or all of their teeth removed, for safety and liability reasons.) They're messy. Unlike a dog or cat, which is predisposed to keep its nest clean and hence is easily housetrained, a monkey will defecate wherever it happens to be, particularly if it's upset. Some combination of potty training and diapers may be at least a partial solution for a juvenile, but will likely be less successful as the animal reaches maturity. Seems a lot to put up with to have discs loaded in your DVD player or your microwave turned on.

Now, before you light up your flamethrowers, I will admit I've never actually lived with a monkey. My personal experience with monkeys is limited to the six months I spent working at the Oregon Regional Primate Research Center many years ago. I learned that monkeys bite, and they smell bad. My personal experience living with a wild animal is limited to the pet raccoon we had when I was a kid. Imagine a whippet, with fingers.

If I were looking for helping hands, I don't think I'd want them to belong to a monkey. But that's just me.

Accessibility For All

After a remodel that took 15 months and cost way more than we could afford, our house is now pretty much accessible. We've got the ramp, a front door that is much easier to negotiate, the wide pocket doors, the accessible bathroom and all. We also have a new latch on the kitchen door.

This was not in the scope of the original project. The thumb-latch type handle on the door between the kitchen and the deck broke shortly after we started, and we've been limping along using the keyed deadbolt, with a rag stuffed in the  hole where the latch used to be. Finally, last week, Scarecrow installed a lock with the strap-style latch recommended for accessibility.

It's accessible, all right. It took Bareit the ever-vigilant whippet about 15 minutes to learn to open the door by jumping up and hitting the latch with his paw. Now the thunder of whippet feet pounding across the yard is punctuated by the slam of the latch into the wall of the kitchen as he bursts through the door, races on muddy feet through the living room, down the hall, and launches himself in a soaring, aerobatic leap onto the bed.

So we're back to using the keyed deadbolt, to keep the whippet in. Or out. But at least it's accessible.

Adventures on eBay

If they put s#!t in a can, I swear, my mom would buy it. Every time I venture onto eBay, I realize she's not the only one.

In our ongoing effort to bring the volume of our belongings into closer  correspondence with the available space in our house, I came across a couple of things I will never again use in a million years but which seemed too valuable to throw away. I decided to put them on eBay. Who knows? There are people like my mom out there.

I've been giving desk-drawer space to a K&E Leroy lettering set ever since my brief and unremarkable career as a zoologist, many many many years ago. It was quite the indispensable tool in its day, for preparing technical charts and graphs. It's now totally obsolete, archaic, even, superseded by garden-variety software installed on pretty much any computer. And it wasn't really something you'd want to keep around to do for fun. Really. Trust me on this. So I put it on eBay. Not only was it not the only item of its kind offered for sale, far from it, but somebody actually bought it. Go figure.

Encouraged by my success, I put up my Olympus OM1 SLR 35mm film camera (remember film?) with f1.8 50mm and f5 85-250 zoom lenses, and a bunch of accessories. It was a fun camera in its day, but I can't remember when I last took it out of the case. And really, film? I invested a fair bit of time in creating a listing that would stand out from the surprising (to me) amount of other old Olympus OM Series hardware. With so many people selling this stuff, I can only assume that there are people buying it. Who knew?

There really are people like my mom out there.

In other developments, Ernie's pain meds seem to be helping, thanks for asking. He is moving a little easier and seems to be resting better.

The ARNP in my family practitioner's office filled out the latest Attending  Physician Statement for the long-term disability insurance company, declaring that as much as I wish it were otherwise I am, in fact, still disabled. Since we will apparently need to do this every 6 to 9 months for the next 10 years, she cleverly saved a copy so it will be a quick and dirty process next time.

The wheelchair guy says a joystick of some sort is really the best option for controlling my power chair. I'm sure he knows what he's talking about, but I'm also sure any joystick-type solution is only going to buy us another couple of months before the Red Queen catches up to us again. And since another joystick modification is not that much less expensive than going with a head control, how about if we just cut to the chase? So, he's going to put together a head control for me to try. We'll see how that goes.

So. It's Friday. And it's a beautiful day. (Guess who was re-watching Fargo the other night.) They say the sun may make a few brief appearances this weekend. For March, in Seattle, that will be a beautiful weekend.

Blogging While Bummed

I try not to wallow in self-pity, but I admit that yesterday afternoon I put my feet in and swished them around a little. I usually don't post to my blog when I'm feeling picked on because, frankly, I usually don't much want to. I didn't really much want to write anything yesterday, either, so I don't know why I did.

It wasn't even self-pity, really; I just felt sad. I knew we wouldn't have Ernie around for much longer, but I felt sad to have it confirmed. I don't have much mobility left in my hands and arms, but I felt sad to acknowledge that I'm losing what little I have. I had been looking forward to seeing some of our greyhound friends last Sunday, and felt sad that I wasn't able to do that.

I've never been a particularly social person. I worked from home for years without ever really missing the interaction with coworkers in the office. Scarecrow has always been the party animal in our family, not me. Even so, I'm feeling a little desperate to get out of the house. As much as I love Scarecrow and Tuffy, when I see anyone else I pounce on them and desperately try to talk them to death. I almost feel like I've forgotten how to have a normal conversation with normal people. I realize this is largely my own darn fault. The prospect of dealing with durable medical equipment providers is offputting, so I kept putting it off. But it's time. I've got a call into the wheelchair guy, and we'll see what he comes up with.

In other news, my Long Term Disability insurance provider needs another statement from my doctor confirming that I'm still disabled. They say the most recent appointment they have information about was last August. I've explained that I last saw the doctor in August, I have no appointments scheduled, and no particular reason to go. My condition hasn't changed (other than to continue to progress). They say my failure to return an Attending Physician Statement by March 30 will "result in closure of this claim." I'm just guessing, here, but if I called today to get a non-emergency appointment with my neurologist, I could probably see her sometime in July. If I was lucky.

We went through this whole thing in October. Are we going to do it every couple of months for the next 10 years?

It never fails. Nothing snaps me out of a blue funk like getting really pissed off!

I just saw a bald eagle fly past my window. Geez, they're big birds!

Beginnings and Endings

Thirty greyhounds, with their people and assorted hangers-on, welcomed spring with a walk around Green Lake in Seattle yesterday afternoon. Ernie would've loved it, but he was too sore and wobbly to go.

His visit to the vet this morning turned up about what we had expected. The new lumps on his leg are malignant (duh). There's no easy way to remove them, even if we were inclined to put him through that, which we're not. His joints are sore. His legs are weak. He screamed pretty much every place the vet poked him, but Ernie is kind of a weenie that way. The vet sent him home with some pain meds. We'll keep him comfortable. He'll let us know when he's had enough.

I'm OK with that. We'll enjoy being with him for as long as we can. When he's ready to go, we'll let him. It hurts that dogs don't live as long as we do, but they don't. Still, when you weigh the pain of losing them against the joy we get from their company, it's always worth it.

I admit I was looking forward to making the walk (roll) around Green Lake myself, even if Ernie couldn't. It wasn't his fault that I didn't go. I've been limping along (figuratively speaking) with bubble gum and bailing wire modifications to the joystick control for my power chair, but I'm afraid the Red Queen has caught up with me again. It's just too hard to make the chair go where I want it to, which, considering the size of this thing, could be really bad. I need a solution that doesn't depend on being able to use my hands. I need to talk to the wheelchair guy again. Maybe he'll have something the Red Queen hasn't heard about yet.

When We Get Bored, Bad Things Happen

Scarecrow is having hardware issues. His office at Bob's Books is right above the room that houses the Adult Day Care Center, so I can hear the crashing and thumping and muffled, but discouraging, words. It might be a bad time to remind him that he needs to call the vet to make an appointment for Ernie.

There's no mistaking when Scarecrow's mad. He has a crashing, thumping, hollering, foot-stomping temper. It can be quite the spectacle, but it never lasts long and when it's over, it's over.

Me, I'm one for the slow burn. When I'm mad, I'm surly and quiet. I'm slow to forgive, and I never forget. Scarecrow's way is better, really. It's easier on everybody. But everybody in my family was a sulker. I never learned any other way.

Anyway, Ernie has two new lumps on his leg where we recently had the latest one removed. We knew they were likely to regrow, but these came up really fast. His leg didn't seem to hurt before, but now it obviously does. His hind legs are weak. He has slipped and fallen on the hardwood floor a couple of times recently, and has trouble getting up. He has even left a few kibbles in his bowl, which is not at all like our boy. We always said that if Ernie ever turned down food it was time to call the vet because he must have one foot in the grave and the other on a banana peel.

He is 12 years old, and I don't want to keep carving on him, but I don't want him to hurt. So we need to talk to the vet and see what we can do for him.

In the meantime, it's looking like a nice weekend and he still enjoys lying in the sun. As long as the dog bed isn't infested with whippets.

Um. About the bored thing. I've been messing around with my blog template. Let me know if I broke anything, OK? To borrow a phrase from every software developer I've ever known, 'It works on my machine.'

Schedule Malfunction

It never fails, seems like. With nothing on my schedule for months in either direction, two things I want to do happen at the same time.

I've been trying to get together with an ex-coworker for a while now, just to catch up, but since she lives way the heck at the opposite end of town, still has a day job, and has to juggle kids and parents and all, it takes some doing. So when we finally figured she could come up on Sunday afternoon, I was really looking forward to seeing her.

Then I remembered that this Sunday afternoon a bunch of the local greyhound folks were planning a walk around Green Lake. I was looking forward to that, too.

Decisions, decisions.

Not a big deal. We'll figure something out. It just seems like the chance of something like this happening ought to be less than 100%, don't you think?

Tuffy is on spring break as of yesterday. I see from her Facebook page that she's planning to spend it trying to find a summer job, applying for a scholarship I've been bugging her about, brushing up on her Chinese, and getting a head start on reading for next term. And I see my cousin reminding her to take some time to goof off and have fun, like she was going to forget. It seems odd to me that I frequently find out what's going on with Tuffy or Scarecrow from their Facebook pages, but there it is. Perhaps it's just my failure to keep pace with technology, but it seems weird to communicate by IM from one end of the house to the other, or even from across the room. We do it all the time, but it still seems weird.

I see from the gingersnap cookie Tuffy left for me in the cupboard that she stopped at Honeybear Bakery yesterday. Nice!

I just got an IM from Scarecrow saying he wants to knock off early and go home. Blue sky, sunshine... I'm out of here!

Another Day in Paradise

"Just another day in paradise!"

That's what my 89-year-old dad always says, when he passes a neighbor on his morning walk. Since he does not actually live in paradise, I guess what he means is it's a nice day and he's enjoying life.

It's pretty amazing, really. One morning, about two years ago, my mom found him on the floor. Exploratory surgery turned up three holes in his gut, and a section of necrotic bowel. They did an initial patch up, but nobody expected him to live. When he survived the first surgery they went back in for a more complete fix, and, to general amazement, he lived through that, too. He was on a respirator, on dialysis, in and out of intensive care (mostly in) for about a month. Nobody expected him to live.

Dad had been very clear about his end-of-life wishes. He did not want extraordinary measures taken to keep him alive. He did not want to live hooked up to a bunch of machines. He wouldn't want to live like that.

We had had that conversation, my parents, my brother, and I, sitting around their dining room table. It wasn't awkward or uncomfortable. He had the Advance Directive and all the necessary paperwork. He just laid it out. We all thought we understood exactly what he meant.

Turns out, when the time came, it wasn't that easy. For each treatment option there was a range of possible outcomes, and we had to try to guess which he would find acceptable, if he were able to decide, and which he would not. What if he lives, but he's confined to bed? What if he lives, but is left with a significant cognitive impairment? What if...?

As it happens, we got to have that conversation a second time -- kind of a 'before and after' thing. Dad's happy we made the decisions we did. He doesn't have much memory of the weeks he spent hooked up to machines in the ICU. He says he realizes he could've wound up severely impaired in one way or another, and says he wouldn't have held it against us had the decisions we made resulted in a less favorable outcome. I don't know if that's true, but that's what he says. He says if the situation arises again, which could happen, he's confident that we understand what he would want us to do.

If the situation arises again, I wish I thought it would be easier than it was the first time.

For myself, I don't want to wind up hooked up to a bunch of machines either. Beyond that, I don't know that I'd be able to draw a line in the sand. As a kid I remember reading about a woman who was paralyzed in a skiing accident, and thinking I'd never want to live in a wheelchair. More recently I remember thinking I can deal with not being able to walk, as long as I can use my hands. The point at which I'd say 'I wouldn't want to live like that' has shifted significantly over the past couple of years. What if I couldn't see? What if I couldn't speak? Would I say 'If I ever get to the point where , I wouldn't want to live like that'?

No lines in the sand for me, thanks. This may not be paradise, but it's another day in Seattle. And that's OK.

A Fluffy Gray Weekend

When the weather is like this, I try to think of the clouds as a soft, fluffy, gray blanket. That works pretty well through most of the winter, especially if you compare winter in Seattle to winter in Michigan.

Around this time of year, though, it starts to feel like a cold, wet, soggy gray blanket.

It even snowed for a few minutes, earlier today. What the heck?

It's looking like it will be a soft, fluffy, gray weekend. Fortunately, I've got a couple of books I've been meaning to read. I gave Scarecrow 'Unseen Academicals' by Terry Pratchett for winter solstice, and he finished it a while ago. I always try to give books I want to read to people who will loan them back to me when they're done. Am I clever, or what? Since Scarecrow and Tuffy are equally clever, we usually have a book trading round robin after every holiday. I've also got 'The Time Travelers Wife' by Audrey Niffenegger. I had it on hold at the library, but after three months I was all the way up to number 364 out of 493 on the hold list, and I got tired of waiting. I found a bargain paperback (I'm such a tightwad) and I was already paying shipping on Scarecrow's birthday present anyway, so what the heck. I get crazy like that sometimes. I don't think it's Scarecrow's kind of book, but Tuffy might like it.

I'm ready for soft, fluffy gray winter to turn into soft, fluffy gray spring. This is Seattle, after all.

Aromatherapy

'Didn't you say you'd left me some steamed cabbage?'

Tuffy gets home late on Wednesday nights, and prowls through the kitchen for leftovers.

'It's in the steamer,' Scarecrow told her.

'There's nothing in the steamer.'

This is not good. Our dogs get veggies from time to time, but a) they're not supposed to steal them off the counter, and b) whippets and cabbage are a lethal combination. You wouldn't think a small(ish) dog can make the air in an enclosed space totally unbreathable, but I tell you, they can. Greyhounds can be bad that way, too, but our creaky old greyhound's counter surfing days are over. It's still too cold to sleep with the bedroom windows open, but we really had no choice.

I really hate it when our house smells bad.

The guy who lived in our house before we bought it was a serious smoker. The carpets reeked. Even the tile in the bathroom smelled like stale smoke. After four years, you'd still occasionally get a whiff of stale cigarette smoke.

And of course, there are the dogs. Gastrointestinal issues aside,  greyhounds and whippets are not particularly stinky, but still.

In the course of remodeling our house we ripped out all the carpeting, and threw out the area rugs that were in the living room and dining room. That helped, some. I'm really looking forward to being able to open the windows. What we really need is fresh air.

My mom is a major consumer of air fresheners, and I admit her house always smells nice. It just seems like using one smell to cover up another doesn't really address the problem, and besides, an early traumatic experience with air fresheners left me scarred for life.

Warning: if you're easily grossed out, you might want to skip this next bit.

I was a TA for a Marine Mammalogy class at UCLA back in the early 17th century. We collected specimens of dolphins and pinnipeds for dissection labs, but these were not the tidy specimens of fetal pigs or dogfish sharks that you get from a biological supply house packed in formalin. They were real specimens that died of who knows what, washed up on a beach somewhere, and sat there for who knows how long before winding up in a freezer at the County Museum of Natural History. By the time we got them and thawed them out, they smelled really bad. Really bad. People on the fourth floor of the Life Science building were complaining about the smell. The lab was in the basement. My office was right across the hall from the lab.

We set up a line of room air fresheners in front of fans in each corner of the room, not really because we thought it would help but because we had to do something. It didn't help. The scent of assorted air fresheners on top of decomposing marine mammal pretty much turned me off of them forever.

Maybe we'll just use some Murphy's Oil Soap on the hardwood floor, and wait until it's warm enough to open the windows.

No Hands

Warning: This post discusses some of the gory details of progressive MS. If you avoid support groups because it's scary to see people in wheelchairs (and I think that's a perfectly reasonable thing to do, myself), you might want to skip it.

You always read about how people who are diagnosed with MS are afraid  they'll wind up in a wheelchair. That's the symbol of disability, the point at which you go from being pretty much OK to being disabled. I realize it's a matter of perception, and everybody's different. But I've been unable to use my hands, and unable  to use my legs. I've tried it both ways. For my money, not being able to walk is not all that big a deal. Not being able to use my hands is far more disabling.

Not that it's a contest or anything. They both suck. And, unfortunately, they're not mutually exclusive.

Not being able to use my legs means I can't stand or walk, of course. Can't ride a bike (that hurts), can't dance (that really hurts). Hiking and backpacking are out. That's about it. Everything else I wanted or needed to do, I could still do. Pretty much. It might not have been easy, or pretty, but I could do it.

Not being able to use my hands is a whole 'nother thing. Not being able to use my hands not only means I can't do things I used to enjoy, like quilting and calligraphy, or things I did to earn a living, like using a keyboard or a pencil and paper. Not being able to use my hands exposed heretofore unimagined vistas of humiliation; not being able to take a shower or brush my hair or dress or eat or blow my nose or use the toilet without help. If your hands and arms don't work, you're pretty much screwed.

I had trouble getting doctors or therapists to take nonfunctional hands seriously, but show up with a mobility problem and they were all over it. Maybe because the mobility problem was one they could solve.

There are lots of solutions for legs that don't work. There are canes and walkers and crutches and wheelchairs and ramps and curb cuts and elevators and large toilet stalls with grab bars. People can see that you're disabled and, if they're so inclined, make accommodations. If your hands and arms don't work, you just look inept and clumsy.

Having scribbled all this, I'm having second thoughts about putting it up. My point, supposing I had one, was to compare the relative disability occasioned by loss of function in various limbs. I just thought it was interesting, in a bizarre and twisted kind of way. It wasn't what I would have expected.

I don't mean to scare anybody. (You'll notice the warning at the beginning of the post.) I realize there are people who find it scary to think about the possible consequences of MS. Who wouldn't? Having a progressive neurological disease is scary, for real, but not everybody with MS will wind up where I am. Not everybody will get the opportunity to compare life with no  hands to life with no legs.

I definitely don't want anybody to feel sorry for me. What would be the point of that? It doesn't help me, and would just make you feel bad. Don't do it. While I don't consider MS a gift and I'm not typically one to look for the silver lining in every cloud, I do realize that I'm lucky lucky lucky. As much as I would rather they didn't have to, I have an amazing family able and willing to take care of me. I have a place I can live, food on the table. Life is not what I expected it would be, for sure, but it's good. On the whole, all things considered, most days, it's good.

Oh what the heck.

No Comment

If you post to a blog in the forest and the trees don't comment...

It's all about comments, isn't it? This whole blogging thing?

At first I was fascinated by the hit counter. How many people? How long? How many pages? Where were they from? Who knew that you could land on my blog by entering "moping around with self-pity" in a search engine?

But really, it's all about comments. When I publish a post, I can't wait to hear what my blogger buddies (you know who you are) have to say. I value your opinions and treasure your support. I rarely leave comments in response to your comments because, well, because I'm a lazy slime weasel, but I appreciate them, every one. I do.

I don't often leave comments on my regular round of blogs, probably because I'm a lazy slime weasel. But know that there are times when I open the comment box only to stare at it, feeling there's nothing I could write that could possibly help you or ease your pain. So I don't write anything. I'm much more likely to write "LOL" or "yeah, me too." That emotional support stuff is hard, and I'm lazy. It doesn't seem like writing "I read what you wrote. I hear you" could mean anything, but I know it does. I know I appreciate it when people do that for me. For the times I should've said that but didn't, I'm sorry.

Another runaway blog. I don't know that I had anything particular in mind to write, but I'm pretty sure this is not at all what I intended. So, yeah.

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.

Anniversaries

Bareit the whippet joined our pack a year ago last Sunday.

This is how the boys marked the occasion. They get crazy like that sometimes.

Whippets are not like greyhounds. I realize I'm working with a sample size of one, here, but they're just not. It's not just the size difference. We've had small female greyhounds that were not much larger than a large male whippet. It's not just the energy level, although admittedly, other than Ernie, all of our greyhounds have been old age pensioners when they came to live with us. It's more a different perception of reality. Faced with an obstacle a greyhound will, quite sensibly, go around. It would never occur to a whippet to do this.  A whippet will go over the obstacle, at great speed, clearing it with feet to spare, without thinking about who might be asleep on the other side. A greyhound could easily do the same thing. They just don't.

A greyhound will happily sit or lay on the same part of the couch a human does, usually taking his half out of the middle. A whippet will sit on the arm of the couch with its forefeet on the seat, or stand on the back, or drape itself in unusual ways over an available human (as illustrated above).
Our first experience with this was when we first got Bareit.  This was his solution to the problem of one laptop, one lap dog, and one lap:

Their reality is very three dimensional.

When faced with something new, a greyhound, like most sentient organisms, will take its  measure from a safe distance. A whippet will walk up and poke it with his nose. If it turns around and makes a scary noise, the whippet will run away really fast. Which it is, fortunately, well equipped to do. Were that not the case, few whippets would survive to reproductive age.

I realize that you can't really generalize from one year with one whippet to all of whippet-kind, but if I were to do that, I'd say I like whippets very much. They're not like greyhounds, but I like them both.

Yesterday was Scarecrow's birthday. I got him a trash can for the bathroom, and a DVD of a movie (Sweet Land) he's already seen. Hey, it's what he wanted!

Last year I got him a whippet.