New Recruits to E’s Mission to Remission

If you keep doing what you’re doing, you’ll keep getting what you’re getting:  It’s the whispered reminder that seems to be a permanent fixture in my post-flare life.  Change is the name of the game and the decision to work half-time was just the beginning. Next up?  Changing up the faces on the health professional side of my “Mission to Remission Team.”  This morning, I got on the phone and made appointments over the next couple of weeks to check out the life warrior potential of some new recruits:

A new G.P.:  I like my present doctor, but for years I have been trying to find a good, female doctor who is accepting patients.  Not only is this one taking patients and comes highly recommended by one of my keepers, it’s also minutes away from my work!

A naturopath: It’s a combination I never thought I would find, a naturopath who has experience working with clients with lupus, but lives with it as well. This discovery happened through the simple sharing of my story with a new friend who knew the naturopath personally.  Oh, and did I mention that her office is walking distance from my apartment?  Can it get any better than this?

A new ophthalmologist: I have to get eye tests from an ophthalmologist every 6 months because of my prolonged use of plaquenil.  I have disliked the “eye-side manner” of my current specialist, but never took the initiative to try to find another one.  Thankfully, one of my keepers is an optometrist, who is referring me to an ophthalmologist she knows personally.  I cancelled my upcoming appointment with my old specialist today!

I am feeling really excited to meet new people who could be part of helping me cultivate a lifestyle of wellness.  And just so you know, my Mission to Remission Team already has some permanent heavy hitters that I don’t plan on replacing anytime soon:

My amazing rheumatologist and rheumatology nurse

My personal pharmacist: My sister!

My personal optometrist: One of my oldest and dearest friends!

My certified massage therapist who I’ve been seeing for over 6 years

My financial advisor

My support system of keepers (you know who you are)

My blog family (you!)

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.”


Face-Off: A New Name for a New Game

The name game.  It’s all about perspective.  

I thought that naming this blog “Lupus Face” was a huge step in acceptance.  By branding myself, I could never forget or be in denial of my reality.  I would always be head-to-head with Lupus, engulfed in the battle, the warrior that never slept.

When I brought up my keeper’s suggestion of changing the name of this blog in my last post, Ramon suggested that I consider “Finding Face.”  It made me think about what I’m searching for.  Will being in a constant face-off with Lupus get me to where I want to be, or do I have to change directions, change perspectives and face forward?  Don’t we need to face forward in order to start moving, in order to take those first steps towards the life we really want?

So today, I changed “Lupus Face:  One in a Sea of a Thousand” to “Face Forward:  Finding Life in Lupus.” A new name.  A new look.  A new way of thinking.  

Goodbye, Evil P

The car next to mine takes a puddle head on, sending a wave of murky water thrashing against my windshield.  I’m blinded momentarily in the blur; frozen somewhere between the muted street lights and the rainy dark.  I find myself caught in the metaphor, blinded by the blur of the movement in my life.  

Two days ago, I walked out of Dr. H’s office entrenched in the surreal feeling that has defined my “post-cerebritis” life.  I was on the very edge of it, looking over, disoriented.  “I’m there,” I thought. 

I’m getting off Prednisone.  

The process will be slow – down 2.5 mg every two weeks if my body reacts well.  My natural ability to produce prednisone has been suppressed, so my vulnerability to illness has exponentially increased.  A heightened level of lupus activity will stall the process, so saying goodbye to Evil P could be a drawn out farewell.  I don’t mind.  I’ve waited this long.  I can wait some more.  I’m one step closer to taking back my body, one step closer to feeling whole again… and that’s all that matters.

Two days ago, something else happened.  One of my keepers had a beautiful baby girl.  I don’t know why, but I feel like I have to mention it because it makes me happy, because it’s another example of the constant “blur” of life – this jolting forward into the unknown.  We do our best to keep ourselves grounded, rooted so we can enjoy the ride and not get lost in the rainy dark of our insecurities and fears.  All he knows is that he loves her… and that’s all he needs to know.   I take great comfort in that love tonight.  It keeps me grounded during this chaotic swirl of time.

The beginning of the end of Prednisone marks a new phase in my medical treatment as a patient and my overall recovery as a person.  With all the changes happening in my life, all the “letting go” I have to do, this is one goodbye that isn’t bittersweet.

It’s just pretty damn sweet.