Change is a good thing, right?

So I've switched to the new Blogger Beta site.


Wish me luck.

My Muse

I got email from my friend Phil last week, asking why I hadn't written anything here for a while. One of the reasons for my absence was a packed social schedule that included a visit from one of my high school friends (which was a lot of fun, but, as always, very tiring as well).

Aside from the fatigue issue, though, I realized that my 'Muse' seemed to be on vacation, or at least taking an extended coffee break -- I just didn't seem to have much of interest (even to me!) to write about. Or, if I did think of something to write about, by the time I got to my desk and logged on to Blogger, whatever I'd thought to write about ended up seeming inane or boring or just not worth the effort.

I still kinda feel that way, so I assume my Muse is out somewhere, sipping a latte and enjoying the fall foliage. Or maybe she's stocking up on Hallowe'en candy? Or raking leaves and packing them into big paper bags for the green waste pick-up in her neighborhood. Whatever she's doing, it ain't got anything to do with me!

Lazy Leg and other lovely symptoms

I have a lazy leg. Sounds a little strange, I know, but - there ya go. Strangeness is my constant companion, along with fatigue and pain.

"Lazy leg" refers to one of my least favorite MS symptom - the one that results in my right leg not responding appropriately when I try to do something with it that should be (pardon the pun) a no-brainer. Like, for example, walking. Or lifting my foot to step onto a curb or a stair. Or pulling on the right leg of my jeans or leggings. This 'lazy' right leg of mine simply won't (or can't) do what it's supposed to do.

So when I get dressed in the morning, I have to sit down and pull the leg up so I can put it into the leggings. I have to remember to be very careful when I'm trying to navigate on streets with sidewalks and curbs, because this 'lazy' leg will sometimes fail to raise itself high enough, and my toe will catch on the curb. And I'll lose what minimal balance I still have. And I might well fall.

This is the reason I always use a cane when I leave the house; I just can't trust this damned lazy right leg of mine.

It happened again this morning, when I was out on the front porch watering the plants. The leg got a wee bit lazy and I somehow managed to trip on the doormat, and almost fall into the front door. Luckily, I still have relatively active reflexes, so I managed to put out my right hand and hold onto the door jamb (our front door is glass, and I don't want to contemplate the results of my falling into it, headlong) until I could regain my equilibrium.

So there are canes stored at both front and back doors, so I won't make the mistake of going out without one.

And you thought it was a drag to remember your keys!

Dreams

Have you ever woken up while still dreaming, and found that you've carried the dream around with you, like wisps of mental fog, for some time after you've climbed out of bed?

Last night, driven out of our bedroom to sleep on the sofa by The Evil Snoring of Someone Who Will Remain Nameless But Wasn't Me, I settled on our comfortable living room sofa with a pillow, a blanket and one cat. (Harley was already there, so she and I shared the space comfortably all night.)

It was a night filled with dreams, I'm pretty sure, because I kept waking, realizing where I was, and drifting back to sleep. But the last dream, the one I was dreaming when David turned on the light in the kitchen and woke me -- that dream is still wafting around in my head, despite a good, strong cup of black coffee. The details of the dream aren't all that important (except to me, of course!); right now, it's the phenomenon that I find interesting.

Is it because I woke while still in mid-dream that these wisps of feelings are lingering? It wasn't a particularly interesting dream - no great revelations or feats of physical prowess happened. But it's still with me, quietly following me around the house.

I know in an hour, or half hour, or several hours, it will be gone. For now, though, I kinda like having it here.

Good-bye, sweet Sheba

Sheba died today. He was beautiful little kitty, and I was very, very fond of him, even though we haven't lived in the same household for over a decade.

Here's a photo of him that my son took.

RIP Sheba. I hope you find Attila and are running around with him now.

And the seasons, they go 'round and 'round

Today I realized that the Japanese maple tree in our back yard (a beautiful tree that sits in the middle of the yard, surrounded by peonies and day lilies and echinacea flowers) has begun to change color, from green tinged with dark red to brilliant, brilliant red. Autumn continues its inexorable movement here in Portland.


I was reminded of a conversation I had with a guy I knew back in the late 1960's. He and I worked together and spent a good deal of time together outside of work (although we remained friends, even though I desperately wanted more from him). He had been dating a lovely young blonde woman, and was ranting about her to me, about how silly and stupid she was because she told him that autumn and winter didn't represent death to her, just a time when the plants were sleeping. At that time, I would have agreed with him about almost anything, so I joined him in sneering at her silliness and romanticism (and was thrilled when they broke up, not that it changed our relationship one bit).

Now, three decades later, I have to admit that I agree with her - completely. Everything needs to rest, to rejuvenate and re-energize. Even though I'm sad when the leaves begin to drop from the branches of the trees, and no more flowers bloom in the yard, I now understand how important it is for all growing things simply to rest for a while.

Every once in a while, I'll catch sight of a hummingbird perched on the feeder, taking a quick rest between sips from the sugar-water-filled globes that hang just next to it. Even those tiny, frenetic little birds need a moment or two of rest before they ramp up their wings and take flight.

It's okay that the seasons change. And my friend was wrong, because I'll be writing about the beauty of spring in six months or so, proving that the trees and bushes didn't die, but were just resting.

Autumn approaches

Or maybe it's already here?

It's now dark enough in the morning that I have to set my alarm so I don't sleep too late. I didn't realize it would make that much difference, moving 600 miles north, but it definitely does. It stays light in the summer months much later here than in northern California, and the winter days seem a lot shorter. But right now, I see dappled sunlight on the wall of the house next door, filtered through green leaves, and it's a gorgeous autumn morning in Portland, for sure.

Our grape arbor fell over yesterday, laden as it was with muscat grapes, and it remains on its side for now. I need to get out there and harvest more grapes (we have a ton of 'em in the refrigerator at the moment, and I've frozen some as well) so David can lift up the arbor, set it upright and reinforce it so it doesn't topple over again.

Our pear tree has produced a prodigious crop as well; I think I'll bake a pear tart if I'm up to it this afternoon. I did manage to bring in another dozen pears and to fill the bird feeder this morning, and to dump the latest collection of vegetable and fruit detritus into the compost bin that lives on the side of the garage. Days like today, when I wake relatively pain-free and with a decent reserve of energy, are such a glorious gift. I may not ever be able to fly to Shanghai and work, but I sure as hell appreciate my 'good' days - almost as much as I did those experiences.

I'm not the boss of me

MS fatigue is the boss of me.

When I first heard about 'MS fatigue', I thought something like "Well, duh! People get tired - what's the big deal?".

Ah hahahahaha... Little did I know (and boy do I wish I didn't know now). MS fatigue is beyond any normal kind of tired I'd ever experienced, even in the days when I was traveling to Europe and Asia for business, and would return home to my normal routine of family, housework and job. I used to get very tired then, especially when I was returning from China or Japan, but that was NOTHING compared to the way I feel every day after I've been awake for four or five hours. And it's not like I DO a helluva lot in those four or five hours, either. I mean, I do try to exercise every morning, on my trusty Theracycle , an exercise bike built by the Exercycle Co. and designed specifically for people with disabilities (it's awesome, and I can't imagine living without it). I do something like 40 minutes on the Theracycle, usually watching a DVD (or gazing out at the birds at the feeders on the back deck), and I try to do some minimal chores around the house, but that's about all I'm able to manage before what feels like a heavy, dark curtain starts to descend in my head, and my body is just too tired to do anything other than crawl into bed and rest. And rest. And rest. And rest.

It's about impossible to plan two social activities in one day (if I want to go to a friend's place for dinner on Saturday night, there's no way I can also check out a street fair or art show in the afternoon. I can't plan anything between the hours of noon and five because I know I'll be living under that dark curtain during those hours, and it's best that I stay at home and not venture out. Nothing scares me more than the thought of being on the road somewhere when the curtain starts its descent, and finding myself too tired and spaced out to drive home. Rather than risk that happening, I opt to stay home, where I'm relatively safe (at least from the dangers inherent in driving a car when I'm barely functioning). And even though I know I really should be damned grateful I have a home to retreat to, where I do feel relatively safe, I still get angry and frustrated when MS fatigue shows me - every day - who's really the boss of me.

And, in response...

...we were invited to dinner last night, by a couple we met when we first arrived in Portland to see what the city was like, around Valentine's Day, 2005. We arrived to find some people we already knew (and like a LOT), as well as two couples we hadn't met before. Our friends' house is lovely, inside and out (just like they are, now that I think about it!), and it felt so good to be there. One couple has been away for most of the summer, and seeing them again was like opening the best birthday gift imaginable. Dinner was delicious, the conversation around the crowded table was lively and interesting.

Best of all, there were two dogs (I love dogs, even though I've always lived with cats); one 3-year-old black German Shepherd and a bouncy, fluffy Lab/Poodle mix puppy, less than a year old. I loved watching the two dogs bound around the back yard, chasing each other, wrestling, chasing, wrestling -- having the time of their lives while we humans stood sipping wine and enjoying the exuberant show. At one point, the older dog was teasing the puppy, coming close with a toy in her mouth and then dashing away as soon as the puppy showed any interest -- another fun game that they played for a while.

When I woke this morning, one of my first thoughts was "Hey, wait a minnit, here. I DO have friends in Portland!"

And y'know what? I do!

Ya gotta have friends

A few weeks ago, we visited the Bay Area for the first time since moving to Portland. I was a little afraid to make the trip (even though I didn't have anything liquid in my carry-on bag!), fearing that I'd be struck with remorse for having moved away. I only spent ten years in the San Francisco Bay Area, but it felt more like home to me than any other place I'd lived. I loved catching sight of the Bay when I was up in the East Bay hills - seeing that breathtaking panorama of water and bridges, with the city and the hills rising up in the west. I never took those views for granted, and they always took my breath away, even after ten years. When I'd travel for business back then, the descent into SFO was such a joyous experience. I'd think "I'm home! And I live in the most beautiful place on earth. I'm SO lucky!".

So I was overcome with anticipatory anxiety as the flight from Portland touched down at Oakland Airport, wondering if I'd be so distressed at having left the Bay Area that returning to Portland would be painful.

Didn't happen that way at all.

For one thing, the freeway that connects Oakland Airport with the East Bay might be the ugliest highway in California. The "Nimitz" is your archetypical urban freeway, surrounded on both sides by warehouses and shopping malls, without a tree in sight for miles. Unlike 101, the freeway that goes from SFO to San Francisco, where you see views of the Bay to the east and the hills to the west, the Nimitz is a dull, depressing and singularly unwelcoming entry to the Bay Area. (I drove the Nimitz to and from work for several years, and knew every damned exit between downtown Oakland and the Dumbarton Bridge by heart, and I hated every minute I spent on that road. If it hadn't been for Books on Tape, I would have turned into one of those maniacs whose road-rage boils over into violence, I'm sure; as it was, I finally 'read' Sense and Sensibility and a bunch of other books, thus saving myself and my fellow travellers from heaven-knows what kind of carnage.)

As we drove through Berkeley to our friend's house in Kensington, a mile from where we lived, I was struck by how dull everything looked, in comparison to the lush green of Portland (I conveniently forgot that things look very different in January, when it's the dead of winter here and the magnolias and camillias are in full bloom in the Bay Area). And I realized that I actually liked it better here in Portland.

What a relief.

We saw several good friends while we were there (nowhere near as many as I would have liked, but ...), at dinner and brunch and dinner again. On Sunday, we attended our friend's memorial in Tilden Park, in the exact same spot where her retirement party was held five (or six) years ago. The memorial was both sad and very beautiful, as her friends spoke of their love and admiration for this remarkable woman, and I was very glad we were able to be part of the celebration of her life.

We saw so many beloved friends at the memorial, people I met in a 'virtual community' back in 1992, people who are still a part of my life via this community, even though I've moved away. But it it me that what I really cared about, what I missed the most wasn't the =place=, but the people.

I miss my friends.

I miss being able to email Eric and suggest that we have a cup of coffee together on Wednesday. I miss driving to Weight Watchers meetings with Ruth, and picking up some veggies and fruit at the El Cerrito Plaza farmers' market when the meeting ended. I miss having breakfast with Darlis. I miss having Sandy or Ron deliver our organic veggies when I was too tired to drive over and get them, and I miss giving Bonnie, their sweet dog, a carrot from the box as a treat. I miss seeing Giselle, always lovely, always beautiful, always vital and interesting. I miss dinners at Ajanta with Jen and Drew. I miss the Sing Things, where I could see so many of these folks, in rooms filled with music and singing.

It's hard to make friends when you're no longer working, when your illness makes it impossible to predict whether you'll be able to drive somewhere and do something after you arrive. Even volunteering is difficult - almost impossible - because of the dreaded MonSter. So my usual ways of meeting people and making friends are no longer available to me.

And ya gotta have friend. Y'know?

Cats we know and love

My son loves cats.

We had a cat who was old when he was born in 1985. We found Punk (full name Punk Lucky spinoza) in a shoebox in the vestibule of the apartment building where we lived in the Back Bay of Boston. She was a teensy little fluffball of fur, so small that it all stood up on her tiny body, and I fell in love with her as soon as we opened that box and peered inside. While Frank went to the supermarket to buy a litter box, litter and kitty food, I took the little one inside our basement apartment, opened the lid of the box, and watched her explore this strange, new universe with typical cat curiosity and energy. We named her Punk because she had a punk-ish attitude (in a good way), Lucky because she was lucky we found her (!) and spinoza because she had a gray spot on the white fur under her chin that Frank insisted looked like Spinoza's mustache.

Punk moved around with us, to another Back Bay apartment, to an apartment in Brighton, and then to the house we purchased in Melrose, MA. I have a photo of myself lying on the sofa, hugely pregnant, with Punk asleep atop my mountainous belly; she liked Zack from the very beginning.

Punk got too old to climb the stairs to her litter box in the basement when I was living by myself in New Jersey, waiting for the end of the school year so Zack could join me there; when she became incontinent, the vet told Frank it was a kindness to euthanize her, which he did. I never got a chance to say 'good-bye' to her, and I remember opening a letter from the vet thanking us for being mindful of Punk's dignity, and crying as I read the words.

As soon as we moved into our house in New Jersey, Zack began to lobby for a cat; he and his dad found two kittens at a local animal shelter and came home with Attila and Sheba (Attila was a teensy orange tabby; Sheba was a sleek and gorgeous black-and-gray tabby). We were told that Attila was a male and Sheba a female, which we believed until we took them to a vet who showed us (graphically, I should add) that Sheba was, indeed, a male. We toyed with changing his name to Heba, but decided he didn't care either way, so Sheba he remained.

Sheba was 'my' cat. He slept with me, snuggled under the blankets against my legs, and followed me around constantly. When I moved to California, leaving Frank, Zack and the kitties behind (another story, and one too difficult for me to write about here, even after eleven years), Sheba became Zack's cat (Attila was always Frank's familiar). On the few occasions that I've visited their home in New Jersey, Sheba seemed to recognize me, and once he ended up sleeping in my lap, like the old days.

Attila died two years ago. Frank found him curled up on a heating vent and buried him in their back yard. Attila was the sweetest cat I've ever known; when he was really happy, his purr almost =rang= with joy. I still get misty-eyed when I think about him.

And now Sheba is sick. The vet thinks he's had a stroke - his hind legs aren't working properly and he's having a lot of trouble getting around. I keep hoping he'll recover long enough so Zack can see him at Thanksgiving, but their vet wasn't optimistic.

This morning, when Sam, our big, loving black-panther-of-a-kitty greeted me in the hallway outside our bedroom door, I picked him up and snuggled with him for a good long time, something I'm often too distracted to stop and do -- just like I'm often too distracted to stop and pay attention to the beauty that surrounds me inside and outside our home. I wonder if I'll ever learn to live in the moment, or to value and cherish every good thing in my life?

For today, anyway, I'll work on that. At least for today.

Anniversaries

It's creeping up on the five-year anniversary of the attacks on the WTC and the Pentagon. It sure doesn't feel like five years, given how we're reminded of that date by the current administration at every possible moment. Please understand that I'm not discounting the enormity of those events, or of their impact on our lives and the lives of all human on this planet.

I am, however, appalled at the way the politicians have seized every opportunity, whether appropriate or not, to push our Fear Buttons by mentioning the date. Nine-Eleven. Nine-Eleven. Nine-Eleven...

A week before September 11, 2001, I had my own little life-changing event. After five months of trying to work from home at a demanding and high-stress job, I finally gave in and went on short-term disability, hoping I could rest and regain the stamina and energy that allowed me to cope with three hours of commuting on Bay Area freeways and upwards of ten hours at the office. My plan was to rest, relax and decompress - to try and ease the endless stress that comes when you work for a company whose mantra is Twenty-Four-Seven, Twenty-Four-Seven, Twenty-Four-Seven. I'd hoped, when opting to work from home, that I could take an hour or two in the middle of the day to sleep/rest (figuring that the three hours I used to spend in the car could now be spent at my computer, balancing out the time I took to rest), but that proved impossible. I don't think there was one day during those five months that the telephone didn't ring within fifteen minutes of my crawling into bed. Things were chaotic at that company during those five months, to say the least, and I was spending hours on the telephone trying to calm and motivate people whose work lives were imploding around them. It's only in retrospect that I understood just how much that constant, unending stress took out of me, and how much smarter it would have been if I'd gone out on disability as soon as the exacerbation hit... Oh well, Twenty-Twenty-Hindsight is always right, isn't it?

On the morning of Nine-Eleven, I woke to David's shout from the bathroom to turn on the television; when I did, I saw the plane hit the second tower, and that was the end of my fantasies of rest and relaxation (not to mention the end of life as any of us knew it). The horror, the sheer, gut-wrenching HORROR of the events of Nine-Eleven became the center of our consciousness for weeks and weeks and weeks. No more Twenty-Four-Seven for me -- it was alll Nine-Eleven, all the time. All the time.

On June 4, 2002, I gave up any dream of returning to work and resigned my position with the Twenty-Four-Seven company - another 'anniversary'. After Thirty-Four years of working full or part-time, TheMonSter closed that door for me, for good (or bad).

**********************************************************************************

But there are a couple of positive anniversaries in the month of September that I'd like to mention, just for balance:

Nine-Eleven is also the wedding anniversary of two of our favorite people, a day that was (and is) filled with joy and love.

Nine-Fourteen was the day that David arrived in the Bay Area to live with me in our little rental house high in the East Bay hills.

Many of our friends celebrate their birthdays in September - each day is as important to us as the friend who was born on that day.


So I guess that, despite the terrorists, whether they were attacking buildings or the Central Nervous System, there is still joy and friendship to celebrate, even in September.

And it's those Anniversaries I prefer to remember.

MS - the Stealth Illness

If I had a dollar for every time someone met me and said "Wow! You don't LOOK sick!", I could probably afford to buy that Prius I've been lusting after.

That's the thing about MS - most of the time, I don't look sick. I might feel like crap, like I've been run over by several trucks, but to the casual observers, I look okay (maybe not great, but definitely not sick).

Here's the thing. I'm in pain all of the time. There isn't a moment in the day when I'm pain-free. Most of the time, the pain is minimal, kind of like physical white-noise. I know it's there, but it doesn't really stop me from doing stuff. Other times, like today, the deep ache in my arms and legs insists on being noticed, not ignored. On days like today, any plans I might have made (like driving to the library to pick up a book on hold) get flushed right down the toilet, because I'm too tired to risk driving the mile or so without risking an accident. On days like today, getting out of bed and throwing on a shirt and a pair of leggings is about all I can manage without needing to crawl back into bed.

Unless you've lived with constant, relentless pain, you can't begin to imagine how exhausting it can be. Even if the pain is the 'white noise' version, it drains away some of my precious energy reserves, which means I start every day with a kind of deficit that just can't be replenished. Even with the medication I take to counter MS fatigue, there are days when the pain wears me down so damned much I can't even unload the dishwasher, much less drive to the supermarket and carry bags of food into the house. Even those ridiculously simple, easy tasks feel like climbing Everest on days like today. So I know I'll end up in bed, propped up on pillows, trying to read a mystery or watch a DVD, but more than likely just sleeping, trying to recharge my energy-batteries enough that I can do something - anything - tomorrow or the day after.

And, of course, I HATE feeling like such a whiner, complaining and bitching all the time about how tired I am or how lousy I feel. I mean, I bore myself when I feel this way - I can only imagine how boring it is to everyone around me. Gack...

So once I've posted this wee rant, I'll find the pillow-armchair thingie that I bought when the first exacerbation smacked me around, grab a couple of books and DVD's, fill my water bottle with cold water, and crawl into bed for the rest of the day.

I guess I should be grateful to have a comfortable bed in a cool, quiet bedroom where I can rest as long as I need to, and most of the time, I am grateful, very grateful. But today, I'm pissed off and tired of being sick, tired of being in pain.

And if anyone told me that I don't "look sick" today, I swear I'd bonk them with my cane.

A footnote from the rabbit hole

I hate sounding so whiny and self-pitying, and I know that's how the last post must sound. But you know - this disease SUCKS, and sometimes it's hard to be all brave and appreciative of all the abundance and good stuff in my life. Sometimes, I just want to SCREAM and say that things suck.

Down The Rabbit Hole

Aside from the physical manifestations of MS (which are, believe me, bad enough on their own), the hardest thing for me to deal with has been the lack of predictability in my life.

For decades, I lived in what seemed like a fairly predictable universe. When I was in grade school and high school, the weeks were formed by classes and after-school activities and the weekends, by the stuff my parents planned for me. In retrospect, I realize how safe things seemed (although I wasn't at all aware of that back then), how normal life was. Stuff happened, of course, stuff like childhood illnesses or snowstorms that messed up the normal ebb and flow of life's movements, but nothing ever shook the rock-solid foundation of my life (other than stuff I initiated, like the 'sex and drugs and rock-n-roll' of life in the 60's).

And then I went to college, dropped out for a few years and started working in office jobs, again sequestered in the safety of class schedules or work schedules, always knowing where I had to be and pretty much what I had to do when I got there. Best of all, I had the energy to accomplish all of it (and lots more outside of work/school) or to change things if I felt like doing that.

See, for a long, long time, if I made up my mind to DO something, I usually found a way to make it happen. I left college, worked, went back and graduated with high honors. I got married and divorced, moved to Boston and got married again. I changed jobs a lot, landing in a slightly better situation, with slightly higher pay every time. We moved from one apartment to another, bought a house, had a baby (who is now a spectacular and gorgeous young man) and continued with our careers. We moved back to the Delaware Valley (which I hated) and I managed to find a job and move to the San Francisco Bay Area, a place I'd fallen in love with while on a business trip.

Oh right. Business travel.

I was terrified of flying on airplanes, so I took a job that required a ton of travel to try and overcome that fear. I went to Dallas and San Francisco, Los Angeles and Denver, meeting cool people and seeing parts of the country I'd only read about up until then. The next job had me traveling to Austin, TX and to Raleigh, NC, as well as to New Hampshire and Maine (easier trips, of course, but still ...). And then I landed a job that included travel to Europe and Asia, and I flew to Shanghai by myself and spent a week at a manufacturing plant working with a team of Chinese managers to design leadership training programs. I was scared to death when I began that trip (flying from the east coast to Detroit to Narita Airport in Japan to Shangai and back again), but damn! it felt good to know I'd somehow managed to pull it off, pushing through my fear to make it happen.

The ability to face and fight through my fears to get where I wanted to go was, in retrospect, a defining factor in my life. If I wanted to do something, dammit, I figured out how to make it happen!

Now? It is to laugh (bitterly). I can't do much of anything for long stretches of time before my pathetic, damaged nervous system stops working. I can't weed in the garden for more than a half hour before my legs get too wobbly to be trusted (I stumble/fall frequently, on soft grass, thankfully). I can't make a date to meet someone for lunch because I might be too tired to drive home afterwards. I can't schedule two things in one morning (like exercising and weeding), because my body can't manage too many demands before it either shuts down or starts doing bizarre stuff. I can't function more than four or five hours in the morning before I MUST sleep (and I used to wake at 6:00, get myself and my son ready for work/day care, work a very full day, get home and do all the dinner and bedtime stuff, work some more, go to sleep at 11:00, and be up the next morning to start again).

And dammit, I WANT to do more. I WANT to be more productive, more active, more interesting. I want to experience more of what Portland has to offer -- but I can't manage it.

It's as if my life has suddenly turned into a kind of pain-ridden version of Alice In Wonderland, where nothing is quite as it used to be and everything is unpredictable.

Except I have two cats as companions and no White Rabbits. And when I wake up, I'm still down the rabbit hole.

So what's MS, anyway?

I have no idea if anyone reads this blog (but hell, I'm old enough to be talking to myself much of the time, right?) or if the folks who read it already know more than they want to know about Multiple Sclerosis, but just in case...

MS is an incurable disease of the Central Nervous System (CNS), as in the brain and spinal cord. No one really knows what causes MS (there are lots of theories, but none have been proven conclusively); as a result, no one has been able to find a cure for the disease. There are lots of treatments, though, ranging from steroids (can I tell you how much I HATE steroids?) to stop an 'exacerbation', to five different injections that slow the progression of the disease, to dozens of meds that treat the wide range of symptoms that accompany the disease. I opted for doing nothing (other than covering my ears and saying "La, la, la") for over a decade after I was diagnosed, and then I had my own little "exacerbation" in the spring of 2001, at which point I was ready to try ANYTHING to feel just a little bit better.

An "exacerbation" (or flare-up or relapse) describes a period of time when one's symptoms get worse (I have what's called 'relapsing/remitting' MS, which means that I experience periods of time when things get worse and then the symptoms abate to one degree or another). No one can predict when a flare-up will occur, or when the symptoms will abate. Hell, no one can predict much of anything about this disease; it's a little like having your life turned into a weird, sick horror movie, where every door might lead into a room filled with monsters and pain.

So in April, 2001, I turned into a kind of walking test tube, taking meds morning and night, and getting stuck with a 1 1/4" needle once a week, in the hope that this experience might spare me continued major damage to my CNS. The thing is, I have no idea whether this medication is helping or not, since many people with MS will experience a flare-up, go into remission, and stay there for a long time -- without the benefit of an obscenely expensive medication that requires having a needle stuck into a muscle once a week. Is the medication working? Beats the hell out of me, but I'm not enough of a gambler (given how few chips I have left these days) to stop taking it, so we continue with the once-a-week shot.

Anyway, back to MS...

Nerves are covered with a fatty substance called myelin that helps conduct impulses along the nerves (think of an electrical wire and its coating). When you have MS, this myelin coating is damaged by your very own immune system -- your body attacks the myelin coating as if it were a virus or bacteria, and kills it, very effectively. Once the myelin coating has been damaged, impulses that used to work just fine suddenly don't work right anymore. Symptoms very wildly, depending on the part of the CNS that has been damaged. Some people have optic nerve damage. Others have problems with incontinence. Others (like me) have problems with balance and walking, and (the worst of all, in my experience) unbelievable fatigue.

I'm not talking fatigue as in "Man, I'm really tired. I think I'll take a quick break and then go back to climbing Anapurna." I'm talking fatigue as in "If I don't lie down this instant, I'm going to fall over and not be able to get up." Or as in "Shit. I'm driving 70 miles an hour in the fast lane on 1o1, and I'm suddenly too tired and dizzy to keep my foot on the accelerator. I gotta get off the road - NOW!!"

A friend of mine who has MS describes MS-fatigue as 'like sinking into quicksand'. For me, it's like having a thick, dark curtain descend in my head, one that makes anything other than rest or sleep impossible. Whatever analogy you use, MS fatigue makes any semblence of a 'normal' life almost impossible.

Plans? Calendars? Appointments? It is to laugh!

If nothing else shows how little control we human have over our lives, MS does.

More later...

All quiet on the home front...

....at least for a little bit.

Our good friends from San Mateo, CA left yesterday, after an all-too-brief visit. Their two sons (age 13 and 11) are wonderful kids (hey, as far as I'm concerned, any 11-year-old who loves sushi and fried calamari is awesome!) and it was great to see them again after so long. The boys were thrilled to be able to sleep in a tent in our back yard (undisturbed by moles or other nocturnal wanderers, apparently), which made it easy to deal with four house guests when we only have one extra bedroom.

David spent both days out and about with them, showing them some of Portland's coolest places, while I, slug that I am, slept/rested/tried to muster some energy so I could be awake when they returned from their adventures. I did as much cooking/entertaining as I could, but ended up needing to sleep a lot more than I would have preferred.

So now the linens on the guest room bed are fresh, as are the towels in the guest bath. Our private, little B&B is quiet, but ready for the next round of guests, expected to arrive some time towards the end of the week or the beginning of next week. I plan to spend a good deal of time between now and then hanging out being even more lazy than usual.

Hitting the MS Fatigue Wall

Well, it happened this morning.

I thought I was resting and not doing too much, but the definition of 'too much' is still something I'm not quite able to grasp, and I hit the Fatigue Wall this morning. So instead of going to the Chinese Garden (a truly gorgeous place in downtown Portland), my son and his girlfriend are sleeping in and I'm trying to rest. With luck, if this damned disease allows, we'll go to the Japanese Garden late this afternoon (another absolutely gorgeous venue), but I'll have to make the trip around the grounds in my wheelchair -- there's no way I can walk, even on one of my so-called 'good days'.

There are times I hate this disease so much I want to scream and throw things.

This is one of those days.

Nosebleed

Have you ever had a nosebleed?

My son used to have them, and I remember how terrified he was when he was very young (hell, I wasn't all that calm inside, either). I don't remember having nosebleeds when I was a kid, but I get them from time to time now, mainly when the humidity is very low.

So last night, after a dinner of Hot Lips Pizza (our current local favorite) and salad, we were watching Lewis Black's latest HBO special, when I realized that my nose was bleeding.

Usually, I get a nosebleed and it stops within a minute or so.

This one was different. I couldn't stop the damned bleeding, and I was reminded that my dad used to get nosebleeds, caused by high blood pressure. Once, a doctor told him if he hadn't had the nosebleed, he would have had a stroke. (Eventually, he did have strokes, a lot of small ones, and he ended up in a nursing home, unable to communicate -- a prisoner in his body. May I say now that I am TERRIFIED of ending up like that?)

I don't have high blood pressure. When I was younger (and thinner!), my blood pressure was usually something like 90/70. Even now, when I'm at the doctor's office, it's something like 125/70. But I gotta tell ya: in my mind, a nosebleed is never 'just a nosebleed'. It's a reminder of just how fragile and vulnerable I am -- we all are -- and how possible it is for my life to be turned upside-down (uh, like with Multiple Sclerosis, for example) overnight.

Anyway, David found the chapter on nosebleeds in our Mayo Clinic reference guide, and I managed to stop it quickly when I figured out what to do, but ... the spectre of my dad and his situation has remained with me.

Anticipation!

My son and his girlfriend will arrive in Portland in three hours! I don't see him often, since he goes to college in Minneapolis, and lives with his dad on the east coast, so this visit is a gift. I can't wait to see him, to hear some details about his internship this summer (he's studying Comic Art at the Minneapolis College of Art and Design) and to get to know Emily a little better.

The weather here is predicted to be gorgeous, and I'm hoping we can show them some of the great stuff in and around Portland to lure them back for more visits.