Blood Test # 189837485

Date:  November 25, 2009

Patient:  Lupian Lab Rat

Current Medications:  Completed 4 cycles of chemo by IV.  Daily:  400 mg Hydroxychloroquine Sulfate (Plaquenil), 15 mg of Prednisone (weaned from 60 mg), 100 mg Dapsone (for lung/infection protection), 2000 IU Vitamin D (to make up for loss due to chemo), 2500 mg of Calcium (for bone protection), Aviane (for ovary protection).  Weekly: 70 mg Alendronic Acid (for bone protection).

General Instructions:  Go to blood lab.  Take number.  Wait.  Look at blood order.  Try to remember what “sedimentation rate” is and why it’s important.  Give up on remembering what “sedimentation rate” is and why it’s important.  Hear number called.  Sit in chair.  Take sweater off/roll up sleeves.  Watch as lab tech person wraps smelly blue strap around upper arm.  Close fist before lab tech tells you to.  Watch as lab tech taps arm.  Close eyes.  Open eyes slightly to see lab tech poking around inside a vein. Breathe. Repeat.  Repeat.  Repeat.  Other arm.  Repeat.  Repeat.  Repeat.  Go back to other arm if needed. Press down on gauze once needle is out.  Watch as lab tech puts medical tape over gauze.  Frown as lab tech puts medical tape over arm hair.  Take sterilized container to bathroom.  Open container.  Wonder if it’s actually sterilized.  Pee a little.  Place container in area where pee just came out.  Sigh as pee goes on hand.  Wipe hand and container.  Close container.  Look at contents of container.  Feel guilty that there is pee on the outside of the container.  Wonder if the lab techs testing the pee wear gloves.  Wash hands.  Drop container in “pee mailbox.” 

Go home. Pick up The Lupus Book: A Guide for Patients and Families off dining room table.  Find folded note stuck to inside cover with medical tape.  Open.  Read:  


Laugh at last line.  Stare at note. Show note to Dad.  Listen to description of forgotten hospital events.  Frown.  Reread last line.  Smile.  Refold note.  Close book.

Follow-up Instructions:  Go to rheumatologist appointment at 12:15 pm, Friday, November 27, 2009.*

*IMPORTANT:  Definitive reasons or answers to anything are not guaranteed.

The Face vs. The Box of “Crazy”

Everyone has a skeleton in their closet.  Mine is a box.  A box full of “crazy.”  

When I first came home from the hospital, I wrote everything down, mostly because I was afraid I was going to forget what I was thinking a moment later.  I wrote every detail of my day in my symptom journal: Hours slept, mood ratings (self-assessment and my parents’), meals, snacks, attempts at naps, activities, etc.  I kept a small notebook in my purse to write down worthy “quote moments” literally seconds after the person said it, I’d even write out whole conversations like I was writing a play.  I’d write down everything in point-form, dozens of intricate puzzles that needed decoding, like the ones that Ben Affleck’s character left himself in the movie “Memento.”  I’d take pictures of signs and random things with my cell phone. This one day I took over 200 pictures with my digital camera of items around my house because I believed that everything in my childhood home had a “message” for me.  

Apparently I thought it was important to take this one...

Self-portrait (two weeks after release from hospital)

 

I even used my digital camera to record myself in a manic state… I even thought I was going to send it to Oprah.  I wrote post-it notes constantly and put them everywhere: in between books, on shelves, on my closet, on my walls, in my wallet.  I’d find things that I believed were “messages” and put them on display like trophies.  Eventually my room looked like… well, it looked crazy… like the person living in it was definitely CRAZY.

Two and a half weeks ago, I came home (after getting into a minor car accident, actually) and I put it all in a box.  All of it.  I ripped all the post-its off the wall, grabbed all my journals and writings  and creepy messages from during my time in the hospital and after, all the books and magazines I bought because I thought they  were “calling out to me,” I even put my keys in there.  I don’t know why I did the last thing… I’ve been confused about where they’ve been this whole time.  I just dumped it all in there, closed the flaps, closed my closet doors and sat there for hours, on the floor, leaning against my bed… staring at it… the skeleton in my closet.  My own personal box of “crazy.”  I decided that night that I wasn’t going to write everything down anymore.  I decided that it was time to trust that I can remember things on my own.  That was a scary decision.  I don’t think I truly believed that I could do it… I felt like I had lost so much of what had happened to me already…

The other night I decided it was time to face the box of crazy.  It’s the only way I am going to get through this.  I need to face reality.  I can’t keep pretending that I’m different characters in my favourite stories, battling imaginary devils and demons. This is real life.  This is MY LIFE.  I need to get my life back.  The things in that box represent all the illusions I have to wade through, all the tricks and booby traps of my brain.  I need to know them, I need to decode them, I need to understand them.  I can’t just put them away like they don’t exist.  I opened the closet and for a good twenty minutes it was just me and the box.  Standoff (cue tumbleweed), both of us unmoving, just waiting, staring, wondering… will she do it?  Suddenly, I leapt forward and emptied it as quickly as I had filled it, ripping it open like I’d rip off a band-aid, eyes half closed from the effort… but I did it.  I emptied it.  I laid out all the brain books and magazines and clippings and info on Lupus on my desk, ready for reading.  I put all the books that “told me to buy them” boldly on the shelves, stored all the creepy messages in plastic inserts ready for further investigation, I put my journals on my bedside table.  Ok fine, I did take a small break in between.  I had to.  Oh, I guess I didn’t mention that while I was doing this, I almost gave myself a panic attack.  My heart was beating so fast and every time I would bring out a new item it would quicken and I would sweat and I couldn’t breathe.  It was all the craziness, I guess.  Each item was crazier than the next, more surprising and more disturbing than the next… and all of it, ALL OF IT, was ME.  I did that.  I bought that.  I thought that.  Yah.  I needed a little break.  They weren’t kidding when they said that facing the truth, facing yourself is the hardest thing you will ever do.  I just never thought I’d be this scary looking.

The box is still in the closet, but it’s not entirely empty.  When I filled it with craziness that night two and a half weeks ago, it was already storing framed pictures of my past life on the stage; my very first headshot, me getting married as Tzeitel in “Fiddler on the Roof” in Grade 12, me on stage during my fourth year honours play during my last year of university.  Is this the hope that Pandora kept safe in her box?  Perhaps.  We need to get Elena “uncrazy” first.

I have demanded that I see a mental health professional as soon as possible.  I have been asking for one ever since I left the hospital.  I’ve been playing phone tag with the doctor’s office receptionist, but the wheels are in motion.  There’s the hope, I think.  I can’t do this all by myself anymore.  I am a brave warrior woman, it is true, but the brain is dark and deceptive terrain.   It’s time to get myself a guide.

Here’s a quick update on the physical state of your favourite lab rat:

I’ve had 15 vials of blood taken in the last week.  Blood test results look good.  White blood cell count normal after second cycle of chemo, hemoglobin a little low (but apparently that is normal for a lupie so no real concern), kidneys doing a-ok despite cocktail of daily drugs (they almost shut down two years ago, so I marvel at their steely magnificence!).  Steroid dose is still very high, but is down from 60 mg a day to 50 mg (the goal is to go down to 5 mg, I think) and moon face continues to expand.  Thrush (mouth fungus) comes and goes, but still has a grody presence.  Continued hair loss.  Analyzed my forehead and discovered there is new hair growth there, apparently another side effect of the steroids.  Sigh.  Forehead fuzz.  Great.  Found two blood clots in two veins in my left hand.  The internet says it is “lupus anticoagulant,” which isn’t too much of a big deal except that it hurts (got more blood drawn for futher investigation) but it will increase my chances of miscarriage… ya know, if the chemo doesn’t fry my ovaries first.  I’ve been put on birth control again to try to protect them.  I stopped taking it two years ago after my anaphylactic shock because I wanted to cut down on the meds in my body and for the fact that increased levels of estrogen is proven to increase lupus flares in women.  I was not happy to hear that I had to take them again, especially since I was so excited to tell her that I actually got my period after not having it for three months (most likely from not eating for two months prior to my hospital stay), but the look of concern and seriousness in Dr. H’s face swayed me in the end.  “Actually, I’d prefer that your ovaries weren’t active right now.  We need to put them to sleep.”  She was like a warrior… a warrior for my ovaries.  I like that.  It’s nice to have one.  Tomorrow I have another appointment at the “lab” where I had my chemo. I am not sure what they are going to do to me in that one – I only just gave blood again today.  My third cycle of chemo is on the 15th and then I have a follow-up appointment for my eyes to see if the vision is improving and acupuncture and hopefully future appointments with a psychologist … well, I told my mom we have too many appointments and that we need a vacation from this weird “vacation” that I’m having.  Hawaii, anyone?