Where I Am

soraya nulliah opening to grace 2

(source)

Seven days from now, I will not achieve the wellness challenge I announced in my last post. Due to a schedule conflict, I switched to an earlier half-marathon event, condensing the slow and steady training I had carefully planned.  When I reached 8 miles, my body started to give me messages: Headaches, nausea, increased fatigue, night sweats, and finally, a case of thrush.  Four years ago, my first experience with thrush was due to a high dose of prednisone, a drug that’s been out of my system for a year and a half. Without steroids to blame, my decision not to run the half-marathon was immediate.

An oral yeast infection can be painful and unsightly, but compared to other lupus symptoms, it’s minor and manageable.  So, why give up so quickly?  There were other factors that were affecting my health besides running long distances, but the message was clear: “Stop. Slow down. This is not the time.”

Fortunately, I was able to cure my thrush naturally with an apple cider vinegar rinse (1 tablespoon of apple cider vinegar in one cup of water) and probiotics. I went easy on the running and with additional rest and nutrition, all the symptoms I was experiencing disappeared. I plan to do the 10 K next week instead, with the goal of running or walking it according to how I feel.  I still want to run/walk a half-marathon one day and although I can’t say I completed this year’s wellness challenge, I feel I’ve passed an important test. When I told my brother about my decision, he said, “if this had been 4 – 6 years ago, you would have gone ahead and done it anyway. I’m proud of you.” So, this is where I am; a long ways off of that half marathon finish line, taking a nap on the side of the track.  If that’s where I am, then it’s a good place to be.

On another note, you’ll notice I’ve been experimenting with a new look for the blog.  Let me know what you think!

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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?

Scrapping it out with the 7th Deadly Sin

 

Did you know that “sin” actually means “missing the mark?”  This makes a lot of sense to me, since I think we can all agree that the majority of us have missed the point of living quite entirely.  I don’t think it is any accident that as a result we are on the cusp of destroying our planet… and ourselves, but that is the kind of talk I promised not to post here, so I will get to my point. 

PRIDE.  The seventh deadly sin.  I never watched the movie “Seven,” but I think it ends with Gweneth Paltrow pulling something heinous out of a sack.  She named her child Apple, did you know that?  Sorry.  Just had to put that in there.  Vanity goes under the pride category and ladies and gents, it’s fighting dirty and I’m crouched in the corner desperately trying to protect my lady parts.  Lisa Ray, the beautiful actress living with cancer who inspired me to write this blog wrote a post about how she couldn’t understand why the biggest thing she was worried about was being buried with a moon face.  Oh dear Lisa Ray, I hear ya, girl.

Ok, now before you pull out the “Oh Elena, you’re still beautiful blah blah blah CRAP,” you need to just STOP.  Thanks and everything, but that does NOT help.  Be honest with me, people.  I’m being honest with you. My face is obviously fatter, unnaturally fat.  It doesn’t match my body AT ALL; my way too thin, sickly looking body.  I look like a Garbage Pail kid.  A bobble head.  Quagmire from “That Family Guy.”  Ok, so you don’t have to agree with the last three comments, but seriously guys, stop saying you can’t notice.  YOU CAN.  I can take it.  Just freaking admit it.  Did I mention that one of the other places that you retain water and weight when on steroids is your mid-section?  So not only do I look bony and gross, but I also have this weird gut sticking out.  I won’t even go into the “humpback” that might happen.  AND I guess I never mentioned that I have “thrush” right now, this disgusting mouth fungus (yes, I have a freaking fungus in my MOUTH) that happens in people with dysfunctioning immune systems.  It’s okay that you just reeled back in disgust just now because I’ve always been one of those people who sees someone’s cold sore and goes home thinking I’ve got one from being in the same room with it.  Yah, try getting a prince who has enough guts to wake up THIS sleeping “beauty.”  Even the most courageous and sincere and loving of Princes would have second thoughts.  By the way, I have been told that my eyes don’t always fully close when I sleep.  I find that horrifying.  Oh and have I mentioned that my BRAIN IS F***ED UP??  Great.  Great combination.  I can’t even go with the whole, “brains is sexier than the body” thing.  I saw this cartoon in the paper of this cute little cactus sitting alone on a table.  Another character in the strip says, “Who’s this?”  The doodle to the right says, “Oh, this is the lonely cactus.  He’s lonely because no one will hug him.”  “Well, of course no one will hug him.  He has spikes all over him.”  The cactus pipes up and says something like, “See, the inside doesn’t really count.”  It almost made me cry.  

To make matters worse, I had to cut off all my hair, which was down past my shoulders because there were big gaping holes when I put it in a ponytail and each time I shower more falls out and I stand there, blind as a bat, staring at these balls of hair, just staring and staring until I get out and take a picture of it.  You know, in the name of science, of medicine, in case you’d like to see how much I’ve lost.  Sick. I actually don’t think I will lose all of it.  I think it will get really thin and a bit patchy, but nothing crazy.  So, why do I even care right?  Because I don’t understand why I can’t have something, ANYTHING, that will make the rest of that stuff – the mouth fungus, the fat face, the belly that belongs to some other body, being home here in a home that’s not my own, the fact that I still don’t feel like I am well enough to spend more than two hours in public because I am scared my energy and strength will run out and I’ll make a scene – a little bit easier to take?  Can’t I at least have my hair?  My long movie star hair that was just starting to show off it’s slight wave?  Can’t I have that????  So I can at least cover parts of my fat cheeks with it??  Seriously.  

But that’s vanity.  Vanity in all it’s disgusting, powerful glory.  I am ashamed to taken in by it… I am literally in the “Paris Hilton Hall of Shame.”  Sigh.  I am sure you can tell that it has been a bad day today.   A very bad day.  A day where I was honestly wondering if I am in a coma right now or if I’m actually dead and this is the last of my brain activity or if I am actually in a mental hospital and my loved ones are sitting next to me watching me sit motionless in a chair by the window.  And there is a part of me that hopes it’s true, because than that means this is just another one of those crazy illusions my brain has created.  It means I don’t have a moon face.  How sad is that?  How incredible sad and pathetic is that?  You don’t have to answer that, because I know I have just turned into that damned cactus that made me cry.  Cartoons are supposed to be FUNNY, people!!

I’ll be fine.  Seriously.  No need to comment and make me “feel better.”  I just needed to post this because I want all those chronically or terminally or mentally ill ladies out there to know that I understand.  I understand how you feel.  It’s okay to at least want to feel pretty at times like this.  It’s funny because I used to wish the opposite.  I used to hate it when people would see me and say I looked great, when inside my body was in so much pain, when the rosiness of my cheeks was actually my butterfly rash.  I wished that my disease wasn’t “invisible,” that it would show in some way so that I didn’t have to go home and wonder if it was all just in my head.  Sometimes I would leave the puke in the toilet on purpose so that it would prove that I was actually sick.  Proof.  It all comes down to proof.  No one goes on blind faith anymore.  It’s not the “in” thing to do.  And now here I am, the foolish character in the story who gets the wish they thought they wanted.  Ah, poetic justice.  It gets ya every time.