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.


Through Wine-Coloured Glasses

The wine flows freely around me, riding the wave of murmured conversation.  Shaky hands leave red crop circles on white linen table tops.  I’d lap it up, but the little white sticker on my pill bottles tell me not to.  I haven’t had a drink in… actually, I don’t remember the last time I had a drink.  It must have been back when Plaquenil was the only weapon in my Lupus fighting arsenal.  

Ah, Plaquenil.  A different “P,” certainly not evil, but a steadfast and enduring part of my body’s chemical make-up for almost 9 years.  It has been the only constant in this crazy medical experiment of mine.  It has always been with me.  It has always been in me.  And that, one of my keepers stated emphatically, merits a blog post.  

Plaquenil is an anti-malarial drug that can be used to treat rheumatic diseases like Lupus.  No one knows why it is effective in decreasing damage to the tissues of the joints, skin and other organs in the body.  It just does.  And for a while, it did for me.  When it wasn’t enough, I convinced myself it was because I didn’t want to take more medication.  I’ve been on it since my first big flare-up, when my heart was getting squished by the swelling tissues of it’s lining.  I was on it through years of Costochodritis (chest wall inflammation), yellow extremities, swelled up joints, limping, brain fog, Lupus headaches, nausea, vein inflammation, fatigue, months without appetite, and manic Lupus Cerebritis brain inflammation.  These days, Dr. H. keeps Plaquenil around because it’s always been around, although I wonder if it’s doing anything at all.  I mean, what exactly was it doing when my body was falling apart?  No offense “Constant P,” but you did a pretty shit ass job the last few years.  

Yah, okay, FINE… I did a pretty shit ass job of taking care of myself, too.  

What can one pill really do against a ravenous, hyperactive immune system and a stressed out, rest-hungry, in denial, overworked (by choice), ridiculous woman?  Constant P needed help a long time ago.  I needed help.  There’s only so much you can do alone.

I scan the room, past the glint of wine glasses, open mouths and the petaled crowns of flowered centrepieces.  I see the outlines of people who received my Lupus Cerebritis-laced letters, who heard the manic stories, people who hadn’t seen me since.  Two of my keepers flank me on either side, their warm smiles reminding me not to care.  We raise our glasses in a toast – red to my left, white to my right, and my orange punch sloshing happily at the centre.  We toast to general awesomeness, to “us,” and I gladly bring my non-alcoholic beverage to my lips because really, when you think about it, mine tastes just as good.