Blinded by the Light

November 27, 2007 | Category: In My Life

It's a universal truth of humans, I think...

Believing that there's always more time.

So, wait, I have a point somewhere.

Right. Now I remember. So, on the way to St. Ives with this sack of cats, trying to find out why my hands go numb.

We've found so many fun things so far. Infections and brains and such.

But the root cause still not determined.

So the next step, in my Doctor Bingo, was to spend yesterday with an aging and abrupt Ophthalmologist. My beautiful son patiently playing with his Leapster in the waiting room.

"You see your Optometrist annually?"

I nodded.

She sighed.

She shook her head slowly.

My heart sank, my ultra-dilated eyes trying to make out the expression on her face.

So, anyway.

Lupus has quietly been killing my eyes; the inflammation causing a retinopathy that is robbing my sight. Sneaking like a thief into the night, collapsing the blood vessels that carry oxygen to my retina.

It is permanent.

The most severe damage so far to date is to my left eye. My right eye is stronger, rocking the house while that lazy ass left one has been out by the pool. Unfortunately, depth perception needs 2 eyes in stereo so that probably explains why I nicked CD's Passat some weeks back pulling out of the driveway around it.

Ahem. That's my story, and I'm sticking to it.

She said that this moment, right now, is the best that my eyes will be for the rest of my life.

It is downhill from here, and the only factor in how long I have is how well I can control my flares and my blood pressure going forward. So, more steroids, more tests, more awareness.

I guess the damage has been happening quickly so it was damn lucky that my doctor got a niggle that I should see an ophthalmologist for hand numbness.

Which? Have I mentioned? Is still unexplained.

Also?

I'm pretty pissed. At no point on this carousel did I expect that looking for a reason for hand numbness would lead to losing my sight.

I should have had some damn warning. A pink slip into my dreams. A dove crapping 'check your eyes' onto my windshield.

A premonition.

Something.

I haven't seen all I want to see yet. There is still so much more ahead of us.

The slow, exploding smile of my son as he figures out a puzzle. The sly sparkle of my husband's come-hither glance. The swirl of hair and teeth and arms as they throw leaves at each other in the yard.

Until I've seen it all, then it can't go dark. Every pout, every landmark, every freckle.

There is daylight left in this day. Some random Monday doesn't get to echo with the Imperial Death March, bringing shadows and gloom.

It doesn't.

Because I say so.

There is still time.

There has to be.

Still.

Critical

November 23, 2007 | Category: In My Life

We got a preliminary diagnosis before Thanksgiving. I should have said something, but it sounded scary at first and there were certain people I thought I should call before, basically, publishing it.

It still sounds scary, but a few days with something leads me to a much more sane place. It's treatable, won't make be barking mad (or madder than I already am), and isn't going to cause any surgeons to tackle me in a hallway with a chainsaw.

So, you know, all good.

We went into our Thanksgiving holiday with CD's Icelandic care package (salted licorice, lamb + pork hot dogs, orange + malt soda, canned peas, and assorted candies), Christmas tunes blasting, and (for sentimentality's sake) a tiny turkey breast and some stuffing.

We argued talked about whether to cut down a tree this year or buy one from the 'good' lot. My inner child clapping with joy because the guys have agreed to a room re-arrange that will allow me to have the Biggest.Christmas.Tree... EVER.

Wait, what I said before. I lied.

It's not all good.

I suck at lying, so I'm surprised I lasted so long.

I have this rule, about doing no harm. But there is an even more important one: harm not thyself.

For the past couple of months, I've been in a fight with someone.

Like back in junior high, that kind of fight. Where you smile at each other in the hallway, but know for a fact they're talking trash about you behind your back because you had the temerity after some pep rally to tell them that they had bad breath.

You see, there's a pod of people in my life who are by nature very critical. The word 'fine' for them is ALWAYS a euphemism for 'There is something very wrong with it, but I believe you incapable of fixing it so I won't say anything.'

In a really providential light it can actually be seen as having high standards - which is a virtue, really. And in any event, this flaw doesn't define this group. As much as my passionate love of run-on sentences doesn't define me.

It's just that, since I quit my job and forever changed the course of my little family... there have been a lot of people - this group included - who have thought I was wrong.

No, don't argue. Deep down, it's what they think. Whatever politically correct thing each of them may say, it all has dripped of disapproval.

I have been frustrated, to the point of tears. I mean, literally (not figuratively) sitting in CD's arms at night and having him remind me of how we did the right thing. Listing the reasons like a catechism. Butterfly kisses against my cheeks, and faith against my hurt.

One after another, I have lost it with this attitude. I understand all the reasons that my quitting a successful career has been stupid, thoughtless, wrong, short-sighted, and somewhat treasonous.

I have tried to be patient with the criticality, I really have. The reactions and the advice and the anger.

But if I suck at lying than I suck even harder at being patient, so I've exploded a couple of times.

And about 2 months ago, I had another small explosion against yet another member of this group. This one quite close to home.

And since then, there's been a frost.

This morning, my son crawled into my lap and asked me why.

And I lied. I said it wasn't so.

But?

I suck at lying.

So I had to find a way to explain. Tell a 7 year-old in a way that was both true but not apologetic. I didn't want him to think there was a war and he needed to side with me. I didn't want to him to think there was anything he could do to change things or that he was in any way responsible. I didn't want my own anger to poison his opinion or for him to feel like this was apocalyptic.

I was striving for a 'Grown ups have disagreed, will eventually make up, and I'm sorry it's affecting you in the meantime. You are a miracle and special and no one is mad at you.'

And fuck it, I think I failed.

I know I did.

He nodded sagely and parroted back the right things but in his eyes was a world of hurt.

That HE has been frosted out too isn't fair. He's felt it, and it has gripped his heart with confusion and pain.

And that has enraged me to the bad place beyond words.

I tried to hide it, as we laid in my bed, stupid dog between us, saying nothing. Wise and sad child, wiggly puppy, and furious mom.

And right this minute now, that has me feeling a hell of a lot more helpless than some infection. I have no clue what to do, or how to make this better.

Thanks Be

November 20, 2007 | Category: In My Life

Today I:

Organized the box of 96 crayons (and sharpener!). By color.

Walked the dog in the drizzly rain.

Taught my son to count by 10's. To 1000.

Sorted out his clothes. By season. And size.

Took a long hot shower.

Told my husband I love him. 5 times.

Stopped to sniff my birthday bouquet, which yet blooms.

Planned our simple Thanksgiving dinner.

Unpacked a care package from Iceland.

Yelled at the dog to stop shredding paper.

Daydreamed about what it would be like to be able to afford some nice furniture.

Moisturized.

Played a hidden picture game with Bear.

Drank a steaming cup of chai.

Breathed a little, wrote some bad poetry, gave the phone the stink eye when it dared ring.

Discussed country music with the handyman.

What I'm saying?

Is if it all had to end tomorrow...

I'd miss days like these.

It's a damn fine life. Even with all the bad news. And much to be thankful for.

In the gloaming

November 19, 2007 | Category: Sick & Tired

In my bones, I don't believe that there is anything new wrong with me. I just think that the Lupus, like the Boston Red Sox, has changed gears.

Where I used to be able to slap it down without even trying hard, now it is roaring through. Stronger, focused, and determined to win.

It changes everything. Sure. But not unexpectedly.

Lupus is a known entity, a facet of my world for over a decade.

I can suit up for that fight and take it to the mattresses.

But until someone says that's actually what's going on, it's a waiting game.

Friday afternoon, they clamped a plastic mesh cage over my face and slid me into a torpedo tube. For an hour I was bombarded with thudding noises and claustrophobia. I tried not to be a wuss.

I failed.

I'm a big-assed wienie and let no one tell you different. I'm even getting a bumper sticker that says so.

I don't mind blood, but man - I hate being stuffed into an MRI.

Believe With Me

November 14, 2007 | Category: In My Life

Sometimes I think that it's harder to be the one that loves. As I submit to tests, and take action against a sea of paperwork, all they can do is stand by and watch.

Bear begs me to literally lean on him, offering his little shoulder as my crutch. And CD? Well, CD struggles. Whispering on the wind of the fears we don't speak.

Reminding me that I married him for a lifetime. As though we are promised so many years.

My heart breaks. I want to race to the end of this, and show them this will all be all right. It's just another complication. And probably a negligible one for all that.

There is no monster under the bed. Get to the part where the white coats back me up on this.

But days can not be skipped. And who would want to?

So we live our days in order.

I made this for him. It was my birthday yesterday, so I got some free hours to spend any way I wanted. Luxurious snippets to create, without the guilt of whatever else needed doing.

I made this for him. Who has come so far with me. We have so much farther we dream of going.

This is my shout to his whisper. And maybe more hope than know.

Update

November 12, 2007 | Category: In My Life

Just got home from the hospital. The tests from Friday came back clear, but the symptoms persist. So off to spend the day with yet another plastic bracelet around my wrist.

NOT my best look, darlings.

More tests. More good news. Cat scan clear, blood clear, etc. etc.

Which, of course, leads you (and I) to say... well, is there anything REALLY wrong that some aerobics and chamomile tea won't cure?

Alas, alack. I failed the 'drunk driver' test... which sober people shouldn't do. On the plus hand, I only failed it the equivalent of a guy who's had a couple of beers. I was able to find my nose and the doctor's finger, if a little off target.

Doc teased that if it had been vodka? I would have found my ear. Scotch? HIS ear. Funny doctor. Ha ha.

I also have a halo on things looking out my left eye.

Boring boring boring... seriously. What's next is a an MRI and an opthamologist exam. Actually, what's next is my damn birthday tomorrow. Then they can cut me open and shine a light in my innards all they want. :)

All I want to do tonight is think of lovely things, and promise my guys that everything is gonna be all right.

Sung to a reggae beat, with heads nodding, amen.

UnRobbed

November 11, 2007 | Category: In My Life

I cried Uncle.

Yeah, me. Big baby in pink streaked hair.

Made the appointment and went into to see Wonder Doctor, whom I love.

Friday morning, sitting in the chair pretending not to see that vinyl examining table. The one with the hidden stirrups, no you can't fool me.

"You aren't better?" she sighed, with those big compassionate eyes and her 'To have more, want less' button shining under the fluorescent lights.

"It still hurts to breathe, and my hands are going numb more and more often."

"Numb?" asked she.

Turns out, this is a bad combination of symptoms. Not normal Raynaud's.

This, as CD likes to say, is why the woman WITHOUT the umpty years of medical training should leave the diagnosing to the woman WITH it. And make appointments more often.

Hurrumph, I say.

But the next thing you know, it's 3 long hours of testing to be done on everybody's favorite lab rat. It's big machines and it's the hospital annex, and it's an EKG and Ox Sat and it's MANY tubes of blood and it's X-rays....

And it's my poor husband, arriving into O'Hare with no wife to meet him. Just some hastily arranged hired car with a driver that in no way looks like a kissable woman.

The list of what could be wrong with me reads like a script from House, MD so we're not thinking about that this weekend.

Instead, a quiet weekend of to-do's and naps. CD and Bear went off to the Museum of Science and Industry to decorate the Icelandic tree and then to the Bee Movie. And I have stayed home in the moist of a vaporizer, strung together with pills and instructions and my trusty quadrupeds at my heels.

And, finally, in the twilight of the weekend this lab rat's father calling from a Police concert. "Listen!" he shouts, enthusiasm bouncing over the line.

And I hold the phone to my ear, listening to Sting sing in concert 900 hundred miles away. My father holding up his phone like a candle, imaging me hearing it all.

Yeah, Dad, I hear it! I hear it!

The crowd sings along, echoing in my kitchen.

And I join in.

...But I should have known this right from the start
Only hope can keep me together
Love can mend your life....

Life is sweet, even as you wait for test results. Maybe because. He strokes my hair and slips in for a kiss, like the one he missed Friday. We hum songs my dad is dedicating to me from half a continent a way. Bear splashes away in a tub, telling us what he liked about the day.

Damocle's sword swings overhead, we see it there. Let it hang with the homemade snowflakes and cobwebs.

Today was for living, in song. And pink cheeks. And laughter.

Today was for today, unrobbed by what comes tomorrow.

Wow, yeah, exactly

November 07, 2007 | Category:

Husband sent another one. Which says it SO much better than I ever have; exactly what I've thought on so many occasions.

Including the stream of consciousness. And the cussing.

Ha Ha

| Category: In My Life

My husband just sent this to me... isn't he funny?

Just, Breathe

November 06, 2007 | Category: In My Life

It should come to no surprise that I am in a flare.

We'd thought I'd turned the corner with the pneumonia, and the stiff hands, etc. So CD got on a plane and went off to Philly on a business trip.

Of course not.

Mostly, I am just breathing as best I can. And basking in the warm glow of a son who is ridiculously helpful.

No, really.

And? I miss you.