Wide Open Spaces

Last week, I poured a shot of Bailey’s into and through the swirl of steam wafting above my expensive, “restaurant gourmet” cup of Earl Grey Tea.  My favourite. The first drop of alcohol I’ve had in one and a half, maybe, two years.

That weekend, I took a birthday shot with a friend.  The next day, a drink with her birthday dinner.

Three drinks.  One week.   All delicious.  All moments of decadence; a sip, a taste of normalcy each time.  And it felt good.  It just did.  I lived a little.  I opened up a little space, a peep hole through all the angst I feel over the fight raging in all the places I can’t see – My body: All that blood, the disease, the chemical warriors who could turn on you at any second, who help you, then almost kill you, then bring you back again.

Don’t worry, I’m not going to drink all the time now, nor do I condone alcohol as a “picker-upper.”  At the moment, I have a window of time where I feel having a drink – one drink – is safer than it has been in this last ’bout of prescription medication warfare.  I’ve been off the Big M for a month and a half because of this white blood cell nonsense and it’s been over a year since my hospitalization… and God, more than that, I wanted to be someone who doesn’t have to think twice about having a drink, she just has one, because she’s 29 freaking years old and she’s with her friends and for God’s sake, it’s only one.

There’s too much to be afraid of.  So, I opened up some space… and filled it with a Bellini.

I realize I never told you about my experience at the “Lupus Day Clinic” back in June.  Probably, because it was actually a difficult experience for me to be immersed in Lupus for three days, up to my neck with info sheets and tips so you don’t look like “that,” or feel like “that,” or (don’t panic, now) get “that,” too.  It made me feel “temporary.”  That feeling good is always temporary.  And that’s okay, I knew that, but three days of reminders is a little excessive.  There were good things about it, too, of course.  I will tell you, but not right now.

Right now, I will share something with you that my ‘cross border, sister keeper and fellow auto-immune warrior shared with me recently.  She sent me this video link that speaks about one woman’s experience with a microbiotic diet, but I wanted to share it more because her story is a reminder that going through illness can gift us clarity and renewed purpose if we open a space wide enough to receive it.


Star Map

It’s late again, and here I am.  Me and the laptop, my constant companion over this year of flux, and even it can’t escape the winds of change (unwrapped software haunts from the kitchen table).

There is a need to be here tonight.  

The picture at the top of this blog feels unsatisfactory in the current moment.  Too corny.  Too literal.  Too expected. It’s trying too hard to be a motivational poster:  “Perseverance!”  “Courage!”  “Determination!”  Or maybe it’s that I’m trying too hard to be a motivational poser.  

The whities are up to 63%, but a strange rash has appeared in many random, irrational places.  And yes, having an itchy bum is hard to accept or understand.  Just sayin’.  Also, it seems that the itch has traveled to my throat alongside a minor case of the sniffles. Drowned in honey ginger tea, this afternoon I watched one of my “Planet Earth” DVDs.  Perhaps, I thought, watching that piranha feeding frenzy will inspire my whities to pep up and restore normalcy to my poor, little bum. Okay, I didn’t actually think that… 

This week I have to go on Evil P everyday instead of every second day, then at the end of the week, I have to tell my doctor if the rash is still there.  Then I go back for blood tests on Monday.  I’m still off the Big M.  I just missed my fourth dose.  

Blah, blah, blah.  

Tonight, I went out for dinner with one of my keepers to one of my favourite restaurants.  I used to go there all the time when I was in high school and university, but I hadn’t been there recently.  It’s small; boxes of incense on sale by the doorway, silver and blue stars draped around a large, potted tree, swirling downwards from the ceiling, resting beneath the glass tabletops.  Huge block mounts of old-style constellation maps and diagrams on walls with silver framed mirrors.  Silvered branches sharing vases with singular green stems, a large, white blossom at the top . Tealights.  A transparent, white cloth hangs between our table and the next.  The intimate murmurs of conversation rush in and out of the spaces between our forks, the distance between our plates.

I don’t know why I’m telling you this, except for that it felt good to be there… even though it was a place I’d been before.

We shall not stop our exploring

And at the end of our exploring

we shall arrive where we started.

and know the place for the first time.

Lisa Ray posted this poem by T.S. Elliot on her blog.  I came across it tonight after lying across my couch writing my first journal entry in two months.  My last two lines read: “I need to explore.  The “finding” is secondary.”

I guess I could probably make my own special motivational poster line:


“You don’t need all of your white blood cells to do it.”


More and Less

The heat persists.  It hangs low, it’s sticky fingers creeping through my window screen. My fan whirs a constant hum and  I feel stiff, tired, curious.  I feel like having a serious sit down with my white blood cells:  Dudes, listen, I’m pretty sure I’m not infected with anything right now, so I just wanted to say thanks, you know, for working double duty, but if it’s not too much trouble, could you tell me what the hell is going on in there??

My last blood test results revealed a 0.1 drop in my whities in one week.  It’s a wee jump down, but takes my whitie power to 42 %, which isn’t incredibly awesome either.  Dr. H’s Plan of Action:  Go off the Big M for two weeks and get re-tested to see if my whitie count will go up.  As per usual, I am unimpressed with the idea of yo-yoing on and and off my meds, but I am eager to solve the crime, so I will cooperate with the authorities. My re-test in on Friday.

I’m not stressed about it, really.  Just curious.  Always curious about that amazing, cellular, regenerative world inside of me, always wondering how my cells are figuring things out with all the years of prescription meds and mad, crazy, Lupus fury.  

My “anniversary” came and went.  I feel silly mentioning it.  I did today at work, which I regret.  I wish there was more silence in me.  More silence and more white blood cells.

Stupid Hot


The Lupus soldier braves the murk, the mug of humid hot.  Condensing, trickling,  … hat-less.  Stupid.  Good move, loser.  The sun beats against my back.  I sigh as I slump down into the driver’s seat of my car.  Today’s desert is a freaking parking lot, for God’s sake.  

I had to repeat my blood tests today.  Dr. H. thinks my white blood cells are being killed off by my lack of Evil P, not an excess of Big M.  Sigh.  I’m not sure how less prednisone would decrease my whities, considering it’s immunosuppressing powers are at a minimum with me being on 2.5 mg. every second day.  The rheumatology clinic blood lab was closed today because of under-staffing, so I crossed the threshold into the main hospital: 


My mood changes as soon as my sandals hit the floor.  Everything grates on me: A woman chatting in her hospital gown, hospital lanyards bouncing against chests, patterned scrubs, hanging signs.  God, I hate hospital gowns.  I enter the blood lab and I take a number like I’m waiting for lunch meat at the deli counter.  An unfamiliar feeling of dread wafts over me.  I’m fidgety, the lab tech asks me if I’m okay.  Of course, I’m okay!  I’ve done this a million times, lady, I’m freaking OKAY.


Okay, so I’m not totally okay.  There has been a “flashback flood” in the last few days with my “anniversary” coming up. And I’m nervous because I’m going to be around lots of people (and their germs) for the double wedding this week with my whities being so low, the forecast says it’s going to be killer hot, and the schedule is jam-packed.  The timing is stupid… and so am I, for being up this late.