Pity Party

Everyone falls off the wagon. And right now, I'm feeling sorry for myself.

I'm sick, and I'm highly symptomatic. I'm constantly being reminded of all the reasons I hate having MS.

This past weekend, some little bug must have arrived in my system, unbeknownst to me. I wasn't feeling sick yet, but something was there. Because as I was walking home from Trent's house on Sunday, I began to feel as though BUGS were crawling all over my back. Quick, prickly little electrical sensations, shooting in every direction. I kept trying to rub or scratch them out, but it was just impossible. I felt lightheaded from time to time. It was frustrating, and disorienting. I was crying. It was the longest mile-walk home ever. But I walked it. I didn't turn back, I didn't call a cab, I didn't even wait for a bus.

The little sensations nagged at me throughout the day Sunday, but by evening I was learning to ignore them. Even after I saw a movie that brought back some horribly painful memories and put me in an emotional tailspin. Monday passed fairly uneventfully. I got some nice recognition at work. I thought, "hey, maybe this week is off to a good start!"

And then on Tuesday, the bugs REALLY arrived.

Whatever cold or flu strain had settled in my system decided to wake up on Tuesday, the biggest day of my year thus far. I had a major project alpha release happening at work. I was majorly stressed out. This has something to do with it, I'm sure. I've known for a while now that MS and stress go hand-in-hand. Well...

By 3:00 in the afternoon I could barely hold my head up. I must have been running a fever because I was going to the bathroom every 15 minutes or so to get paper towel to wipe the sweat off my face, just so I could keep up my "normal" appearance until the project went out the door at 4:00 on the UPS truck.

I didn't eat a thing all day. I just worked, worked, worked, until it was done. Once I saw that truck drive away, I was outtie. I went home, walked in the door, and collapsed in a pool of my own sweat. I sweated out the fever, all night long. I didn't even move. I was in so much pain -- every inch of my body hurt -- I couldn't even stand to move under the covers. I was hot, I was cold, but I just lay there.

Now, I woke up in the morning and I felt slightly better. I was thinking more clearly, at least. But I felt like a weighty cold was setting in. And then the worry began. Because the pieces of the puzzle started to fall together... Stress... Flu-like symptoms... MS symptoms flaring... It was like winter 2006 all over again.

People with MS cannot get stressed out. Of course we DO, but beyond a certain point, we can't. And I did. This lead to me catching something really nasty. Because when I get stressed (and this is just Dr. Lisa talking here), my brain goes, "Ooh... BUSY BUSY BUSY!!!" And my immune system goes, "Alright -- LUNCH!"

So I wound up with this killer flu, plus all my favorite MS symptoms. Because my immune system has been busy doing things it's not supposed to do. Like EATING MY BRAIN AND SPINAL CORD. Which caused my favorite MS symptom of all, on Thursday...

I started shitting myself.

It's so, so wonderful, to be 30 years old and to spontaneously shit yourself on the sidewalk outside your house at 7:30 in the morning. It gives you such glorious visions of your future. Gosh, I LOVE that little pea-sized lesion on my cervical spinal cord that screws up all my internal workings. It really has made me stop caring about SO much in this life.

My hair? FUCK IT.

My clothes? FUCK 'EM (they all have stains you-know-where, anyway).

My weight? WHATEVER!

What I'm doing Saturday night? FUCK IF I CARE!!!

And just to add a nice, extra helping of stress to my life yesterday, I went to the pharmacy and they tried to randomly charge me $2,465 for a monthly kit of my daily injections and $685 for a monthly refill of my "brain pills." They dropped a bombshell on me and told me that my neurologist (Kaiser San Francisco's Chief of Neurology) had left Kaiser without informing me. That I had been prescribed this stuff by a "non-provider."

Uh, mistake. But all I could do was shriek, throw my planner at the clerk, and burst into tears in the middle of the (very crowded) hospital pharmacy.

Wait -- another glorious vision of the future: I better never get laid off, and lose my health insurance...

So now it's Friday afternoon and I'm still exhaustingly sick, and I have all these other crazy MS symptoms going on. Because now I can't stop my immune system from doing the stupid shit it's doing to my brain. I can't turn it off there and make it go do what it's supposed to do. And let me tell you, when MS people get the flu, we don't get it like you do. You have a healthy immune system that makes even the easy shit easier.

You think you feel bad, but you could feel so much worse. Even if I wasn't stressed out right now, my body would still by confused about how to kill this asshole bug. Confused naturally, and confused thanks to all the (expensive!) drugs I take to intentionally confuse it.

Just because I have some bug, it's automatically harder to move. Like, harder to pick up my legs. Walking up the six shallow steps to my office is like the hardest thing I do all day, because it's in plain sight of everyone I work with. And I seriously doubt I can do it.

Just because I have a few germs, I might be sitting in a meeting making eye contact with you, and all of a sudden, my whole field of vision starts to shake. It makes me want to puke, but I just pretend like all's normal, and keep talking -- "YES, we can do this for 21k!"

Just because I'm sick, and I have MS I might be driving the carpool car and my feet start to burn so bad I feel like I can't keep them on the gas pedal any more. But I better -- because I could kill us if I don't!

We all have our crosses to bear. But this is why I feel sorry for myself right now. And why I won't now that I've written it.

Attitude -- back UP!!!

3 Years...

I'm approaching my three-year MS remission anniversary.

Just as I started thinking about it, JUST as I started getting excited, I got an email request from my mother to counsel a family friend who was dealing with the news of a loved one newly-diagnosed.

I happened to be on my way to an MS focus group that night, too.

As I've moved farther away from the role of "traumatized patient," through the land of "damaged goods," to "triumphant survivor," it's interesting to me to hear/observe the difference in how I tell my story now. This sounds infinitely more confident -- wise -- than how I told it at the one- and two-year marks (because let's face it; I like to blab; I've been writing it down for a while).

I like the ring it's got to it now...

Subject: Hi from San Francisco!
From: Lisa Wisniewski
Sent: Mon 1/05/09 4:22 PM
To: Mary Granata
Cc: Marge Wisniewski

Hi Mary!

Hope you don't mind -- my mom gave me your email address. She told me that Angie's brother-in-law was just diagnosed with MS and that they're very worried. That makes sense -- it's very scary! Especially in the beginning. But it doesn't stay that scary, so I just thought I would drop you a note that might hopefully make you all feel a little better...

It's been almost four years now since I was diagnosed; you might remember. Things were bad in the beginning for me; really bad. I had two relapses in the first 8 months, went through two different treatment courses and nothing seemed to be helping it. Just more brain lesions, more hospital stays... Blah blah blah. I was pretty sure the way things were going, I'd be spending half of every year on my back in bed, IF I was lucky... But it just takes some time to figure it out.

The way they talk to you about it in the beginning... It seems hopeless. The very first thing they said to me after my follow-up appointment was, "Well, as you know, you now have a clinically definite diagnosis. There is no cure for multiple sclerosis." I was like, "FXXX YOU! Two weeks ago I was perfectly normal! I didn't even COUGH, for crying out loud!"

And that's the worst thing they can do for you, because MS is in your brain. You can't get freaked out, you can't get stressed out, worn out, you can't get depressed. It WILL affect it. You have to stay positive, you have to believe you can control it. The day things turned around for me was the day I stopped being afraid.

About that, I DO NOT KID.

He should start treatment right away, like they tell him to, but he shouldn't put all his eggs in that basket. The first treatment I was on failed me. It didn't do ANYTHING for me. For eight months I gave myself awful, painful, intramuscular injections believing they would save me from being a cripple. I got the flu after every single injection. I ran a fever for eight months. I struggled through eight months of work, so sick from interferon that I could barely function (it was winter in Detroit, too; ugh). And then one day I woke up without legs or a torso again. And my MRI showed all kinds of new lesion activity. Man, did I feel cheated. But that's how this disease works. Not every drug works for everyone. It will take time, and I had to start all over. A new drug. A new nurse, coming to my house to train me. New injection techniques. A new system to keep track of everything. New paperwork with the insurance company...

Which is why I believe you have to seek out a deeper treatment than drugs.

You have to make tough decisions to simplify life, and remove stressors. I quit my job. I ended a relationship that was crippling me. I moved far away and got a fresh start. Maybe he can't do all those things, but he has to look hard and uncover what he CAN do to make himself truly happy. Happiness will equal health.

That strategy -- that won't fail him.

And don't be afraid to look at alternative therapy. Until the early 90s, there was absolutely NOTHING they did for people with MS. They just sent you home, and told you to hope for the best. Obviously, a lot of people weren't willing to accept that. So there is TONS of information on alternative therapies out there. I've become very devoted to healthy eating. I don't eat any animal products other than fish (because they're rich in omega fatty acids, which strengthen the blood-brain barrier, and which some doctors believe MS patients are in dire need of).

Since I finally landed on a cocktail of the right therapy (in the end I chose the one that DOESN'T have the greatest clinical data, but it doesn't make me as sick, and I value my quality of life), got my diet going, and made some major life revisions to put myself in a better state of mind, I have been nearly symptom-free. On Valentine's Day, I'll celebrate my three-year remission anniversary. On Valentine's Day 2006, they briefly thought I might be progressive. That's a huge stride.

But the most important thing is that I'm not afraid of MS any more. It bothers me some times, sure -- but no more than a lot of other things in life.

So best of luck to him. Please feel free to give him my email if he ever wants to talk, and all my love to you and yours. Happy new year!

Love,

Lisa :)

One word: DISAPPEAR.

I've been spending a ridiculous amount of time on the internet these days. It's a habit I need to break, really.

It causes me to take notice of things. Things that bother me. And obsess about them.

Things like the stupid words people use in their internet speak or when trying to be "cool" in California. Words that drive me crazy. Not only do I refuse to give up proper grammar and punctuation in cyberspace, but I refuse -- REFUSE -- to use any of the following words in my internet banter. Or -- GOD FORBID -- in real life.

Because I've heard these words come out of people's mouths. I have.

The list of "WORDS THAT MUST GO TO THE LAKE OF FIRE:"

(and this of course is a work in progress)

• Meh
• Nom
• Staycation
• Hella (of course)
  
• Totes, Supes, or any other word shortened to end in "es" that HAS NO BUSINESS PRETENDING IT'S CUTER THAN IT IS!!!
  

I'll be adding to this periodically. I'm keeping a notepad entry on the CrackBerry. But, in honor of the presidential debate tonight, let me just throw in the obvious...

Yep: you guessed it.



Can't even say it. Type it. Whatever.

Mountainwoman!

Dead mountain mouth of carious teeth that cannot spit
Here one can neither stand nor lie nor sit
There is not even silence in the mountains
But dry sterile thunder without rain

- T.S. Eliot, The Waste Land

I love Eliot. I kept thinking about these lines during and after my outing to the Sierra Club's "Hiker's Hut" in Sam McDonald Park, in San Mateo County, this past weekend.

Which should really be called the Sierra Club's "Hut For Outdoor Geniuses Only." Because it's harder than hell to find, and if you're as dumb as I am, you might hike the wrong trail to get there.

KNOW THIS NOW: You're NOT supposed to hike a trail to get to the Hiker's Hut. I don't know WHAT I was thinking! You're supposed to hike the Fire Road.

I was told the hike was 1.5 miles. Well, it would have been. On the Fire Road. On the Heritage Trail -- not exactly. Probably more like 4 miles. I'm actually a pretty experienced hiker, and I'm VERY good at reading maps, and I made this mistake. I failed to see that the Heritage Trail couldn't possibly have been 1.5 miles. I failed to notice the elevation changes.

The grade of the hike, of course, being of the utmost importance. Because this was an overnighter, and I was carrying the following shit on my back...

You ready?

• Clothes for myself, including a sweatshirt, jacket, pair of jeans, and other sundry items (I was apparently trying to pack the HEAVIEST CLOTHES I COULD FIND)
  
• An extra pair of shoes
• A book on Fortifications of the Incas (yep); imagine it if you can
• Portable speakers for my iPod
• My medication
• A tin of dominoes -- REAL dominoes (those suckers are heavy)
• Food for both myself and Trent, for two days, including a deli sandwich, spring rolls, a bag of pretzels, granola bars, a bag of carrots, two bags of dried fruit, and a few other things...
  
• 3 liters of water
• A fifth of Jack Daniels

Yes, it's as absurd as it sounds. Not hard to imagine why, after about an hour of setting a brisk pace for our group, thinking we only had a half-hour hike in front of us, I collapsed into a thorny bush at the foot of a zig-zagging switchback, glaring up at the mountain, cursing it's mouth full of carrious teeth, cursing my own stupid ass, now full of brambles.

But -- I got there. I did. There were many, many adventures along the way -- I can't relate them all. But eventually, I stood on the deck of the Hiker's Hut and watched the sun go down.

Others tried to take away the weight of my pack, after I started nearly hyperventilating, and hallucinating that I saw the Hiker's Hut in front of me. But I insisted on being allowed to haul that shit up there.

For most of the second half of the hike, I couldn't feel my legs. The heat and exhaustion woke up my brain lesions, and I was teetering on an edge far more precarious than the Butano Ridge. I made myself symptomatic again.

But it would have been worse still to not finish. Because THAT would have struck a blow to my self-sufficiency, even if it had been fairly dealt by my own stupidity.

I promised myself that I would never, never, EVER let MS make me feel incapable. Even if it meant choosing my mind over my brain, which I did here.

I pushed myself. Hard. Harder than my doctors would have liked.

But damn, it felt good.



And also, I didn't want to spend the night out there...

London calling...

My company has a creative office in London. The sister office to the one I work in here, in San Francisco.

I'm thinking of inquiring into what it might take to transfer there...

Because...

Yep...



If the American people fall for this, I just can't take it anymore.

I realize that I, and my fellow San Franciscans, are in the minority. Because I grew up in Michigan, one of the most interesting states in the nation in our times. If you want to get a sense of America and its problems, make a trip to Michigan. You'll find it all.

The ancien regime is dying there, under the weight of the past half-century's misfortunes, mishandlings, and misleaders. The American auto industry is breathing its last, and in the staunchly blue regions of what was once America's greatest industrial state, where the American dream reached its loftiest heights, Democrats are wandering, dazed and confused. And tense, because the only thing holding them together all these years was that industrial way of life: people of all different races, religions, and backgrounds. Regional cooperation otherwise is unknown to them.

And outside the manufacturing centers of Detroit, Dearborn, Flint... The counties glow as red as they do in the bible belt, fueling deep divisions in state legislation.

Michigan is starving for a new path, for an economic boost, for jobs, for young people... And it's been that way for a while now.

When I moved to the Bay Area, being a tried and true Ann Arbor liberal, proud of my days as a rally-girl for the Defend Affirmative Action Party in the 90s, when white red-county students were suing my beloved University of Michigan all the way to the Supreme Court for admitting black blue-county students ahead of them, I found that my politics were the same as most San Franciscans (maybe a little more to the left, even).

But I knew, and I know now, the rest of America is a much stickier, selfish place.

Okay -- let's just call it "more complicated."

And I've been on the Yelp talk threads all morning listening to educated, bleeding San Franciscan hearts saying things like...

"HELLO PRESIDENT OBAMA! He must be laughing right now, McCain is INSANE, he just cost himself the race."

And...

"McCain's camp is thinking that they will hold onto the soccer moms by picking a female running mate. I think he's 'misunderestimating' the fact that he may [come] off as superficial and misogynistic to the public..."

And...

"I'm listening to NPR right now, and they're being all cheeky about Sarah Palin. I love it."

McCain, insane? Yes, yes he is. This entire thing insane? Absolutely. A complete political ploy that insults the intelligence of thinking Americans everywhere? Um, YEAH.

But, Bay Area residents --

WAKE THE FXXX UP.

You do not represent the will and mindset of the American people.

Do you realize how the rest of the country sees YOU? They still think SUSHI IS GROSS. THEY DON'T EVEN KNOW WHAT "MISOGYNISTIC" MEANS!

OF COURSE THEY CAN FALL FOR THIS SHIT.

And, they don't listen to NPR, either.

I happened to get this news about Sarah Beauty Queen this morning just as I stepped off a redeye to Detroit, and sat down for breakfast in a diner with my mother. The TV was tuned to Fox News and every eye was glued to it.

Even though I'm in a blue state. Or what WAS a blue state. Jesus.

When I get back to San Francisco, the first thing I'm doing is volunteering for Obama's campaign. And I'm calling on every other Bay Area Democrat, liberal -- whoever believes in the big O -- to do the same.

This election is NOT OURS TO LOSE. We are the minority. We are the revolutionaries, in our tiny little radical city where gay marriage is legal and recycling is mandatory. Change comes through STRUGGLE. It will be hard won.

You're supposed to be in good shape, SF'ers. You know -- from riding your bikes everywhere and hiking and surfing and shit. So get off your asses and WORK!!!

Take Shelter...

I walked past this sign on a construction barricade on Mission Street the other day, just a few blocks from my house.

It was 9:00 AM on a Saturday, and I was running to the BART station. I was late to meet my college roommate, her husband, and six-month-old baby. The whole family was in town from Michigan, and we’d planned a “super San Francisco experience!” day. Only problem was I had a wicked hangover from a super San Francisco experience the night before, if you know what I mean…

So I was feeling less than sharp. In fact, my eyes were doing that thing where they don’t quite track right – that’s how hungover I was. I had to stop my shower, get out, and eat a nectarine to stop myself from barfing – THAT’S HOW HUNGOVER I WAS.

Man, I’m never having a “girl’s night” again.

Anyway…

What I’m trying to say is, I had one mission on Mission that morning: get to the BART, and don’t barf. Well, I guess that’s two missions… So for me to stop and take this picture means these words really struck a chord, somewhere in the depths of my alcohol-soaked soul. It took at least two minutes for me to get my camera out of my bag, people. I could have EASILY barfed on the street during that time. Like a lot of – dare I say? – homeless people do on Mission Street.

So that brings me to my point…

We’re not so different, are we? Those of us homeys, and those of us homeless? I thought this was an incredibly powerful statement. How true – since when did it become a crime to go without? Of course, some of the people on our streets here in San Francisco and elsewhere ARE criminals, but to believe they all are is… is…

WTF?

You lose your job, you lose your home – okay, maybe you’re an alcoholic (I’m certainly not gonna judge you there) – and then before you know it, your house is gone, too. In this day and age, I think we all need to admit it’s not that hard to imagine. Every stupid morning news magazine is talking about the skyrocketing foreclosure rate in America.

And THEN – you’re somehow a criminal because of it. You’re doing something wrong by being on the street.

The point is, there are many, many paths that lead to the street. But we’re so quick to lump those people out there together into one category: BAD PEOPLE. And how funny: they’re bad, because we have more than they do. They should all go away. They should all get out of our neighborhoods because they’re scary and they drive the property values down and they must be about to rob us.

Even though yesterday they might have been our neighbors.

Does anyone else think this is nutso?

And, does anyone else think they intentionally papered this statement next to the poster for the band called ANIMOSITY?

Words.

Love ‘em.

I love seeing them combined like this, whether intentionally or not. They ARE just building blocks, after all… We use them for shelter as much as we do the roofs over our heads…

Summertime memories...

We don't really have a summer in San Francisco. Not like in the Midwest. No skeeters and crickets buzzing and chipring all night long... It's not hot and sticky... No dang humidity to leave you wiping the back of your neck after walking just a hundred feet... You just can't WAIT to leap in the lake and cool off...

The lake: where nothing will bite you. Ahh -- the Midwestern lake!

But know what we DO have in SF?

OTTER POPS!



I don't know what it is about these things, but they just never get old. NEVER!!!

Nothing but sugar and water. And PURE AMUSEMENT! A blue tongue is funny! FUNNY, I tell you! Whether you're 3, or 30.

(This pic is so ugly, but my tongue matches my tank top, so it had to be shared.)

I <3 summer.