Storm Chaser

A storm is brewing.  I dash out into the looming grey, raincoat in hand.  Seeds float down from the trees, swirling ’round my feet.  I kick my way through them, letting them slip into the bottom of my shoes as I stroll to my favourite card store.  The humidity warms my bare arms as I brush past patio onlookers.  If they look, I stand a little straighter.  I try to smile with my eyes.   Why not?

“The obstacle is the path.”  – Zen Proverb.  The quote pops out at me as I slowly rotate a rack of cards.  I let it pass out of my line of sight, but it lingers in my mind as I make my way home.  The storm is at my back, but I walk slowly.  

I think about how differently I would have felt about that quote a year ago.  A year ago, I wouldn’t have been able to take this walk.  A year ago, I could hardly breathe from chest inflammation.  A year ago, I had just lost my appetite and was on my way to losing 20 pounds.  I was about to reach the very edge of my tolerance for pain and fatigue and would be getting my first shot of Prednisone from an incompetent doctor.  I was a landslide.  I was about to crash down, crushing myself and all my keepers with me.  I would of looked at that quote with exhaustion and indifference.  “Yah, yah,” I would have thought, “I’m living it baby, now fuck off.”  

And now, pain-free, head full of hair, bubbling with lesser-moon-faced enthusiasm and Prednisone-reduction optimism, I nod like a self-anointed zen disciple.  I am startled by the truth of it and by my own ridiculousness.  It’s easy to be a mighty zen warrior when you’re in between wars.  

Down to 5 mg of Evil P, the lowest ever.  My butterfly rash comes out to play.  I’m a little more tired and prone to eating less, but it’s nothing I can’t fix.  And I am myself.  Truly.  I stand guard over my brain, armed with my zen proverbs and leafy green salads.  Ridiculous, indeed.

And so, the sleepy zen warrior scurries up the stairs and crosses the threshold of her hobbit hole.  Dry.  

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Beam me up, Dermy

The door opens and my eyes drift from the paperback in my hand down to the black shoes gliding past my toes.   I tuck Jane Austen’s Pride & Prejudice in the open gap of my shoulder bag and adjust myself to face the newest specialist on Elena’s roster of Lupus warriors.  I shook my dermatologist’s hand and smiled uncontrollably.  

My skin specialist was Captain Jean-Luc Picard.  

Okay, so obviously he wasn’t actually Jean-Luc Picard and the dermatology clinic was hardly the Starship Enterprise, but his resemblance in voice (yes, he had the accent too) and manner made our 45 minutes together extremely amusing.

I was referred to Dr. Picard (let’s call him Dr. Picard, shall we?) when I went to my GP about a year ago with tiny sores on the tips of my fingers.  They looked like mini, fleshy mine fields that stung with every touch.  I hid them very well, as I hid all my painful secrets and as always, only one Keeper was privy to the sight.  He had encouraged me to go to my GP after they failed to heal in the upcoming weeks.  To make things even more pleasing, my nails were discoloured and grew out in a distorted curve.  My chest and joint inflammation were also at an all time high, affecting my ability to breathe and giving me a slight limp.  We were going through a severe cold snap at the time and my Raynaud’s had my fingers and toes white and bloodless for the majority of my days.  My butterfly rash was constant, flashing the red alert as it sat angrily atop my cheeks.  I had seen better days to say the least.  

Months later, when the referral came through, the sores had finally healed up but it had taken months to do so.  My appointment with him was supposed to have happened in August, but I was busy confusing the doctors with my brain inflammation shenanigans.  My nails improved as well, but I noticed when I checked out of the hospital, portions of my nails were black and discoloured.  That disappeared too, with the exception of one baby toe nail.  I was feeling odd about going to see the dermatologist after so much time had passed, but I decided to go anyway.  

Dr. Picard held my eyes for the duration of our conversation, gesturing solemnly (yet quite pleasantly) during his detailed (and at times, perhaps overly so) explanation of why the skin on the tips of my fingers had decided to explode.  It took great effort to stay connected to what he was saying as I found myself drifting off on the lilt of his British accent, thinking of the great fun I would have blogging about him when I got home.  I watched him nod gravely as I explained my symptoms.  

“It’s because of the Lupus, you see,”  Dr. Picard stated as he sat scribbling on my file.   Oh… right.  Of course.  Somehow a part me thought it had to be something else.  It can’t ALL be Lupus, can it?  There must be something it CAN’T do.

“The Raynaud’s restricts the blood to your fingertips and when it is particularly bad for long stretches, sores and malformed or discoloured fingernails result.”  How absurd it was to watch this serious, sincere clone of a starship captain, explain in detail the preventative measures that can be taken from the kinds of lotions, cleansers, brand of thermal sock and boot, even price points and the difference between no name and brand name.  At one point, he told me to put on my jacket, telling me to feel free to put on my mittens – “Don’t be embarrassed, I know how it is.”  I almost laughed.  Not because I didn’t believe him, but because it felt so odd to speak of my Raynaud’s pain as a topic that was worthy of lengthy discussion and of enough concern that he wanted to have my follow-up appointment in the hot summer month of July so that my hands and toes would not get cold as he examined me.  

I asked about my increased risk of cancer, which is quoted on several of the drugs I am/have/will take (Chemo (Cyclophosphomide), Imuran, Methyltrexate) and if I should be checking the moles on my body.  A lengthy discussion ensued on how and what to check for, tips on taking pictures of moles, to an assurance that I would not have to take off my underwear for a full body examination.  Oh, and while waiting in the examination room, to please keep my jacket on over my gown and please, don’t take off my socks and shoes until he comes in.  It was of the utmost importance that I keep warm until the very last second.  My hands and feet were giddy from all the attention. 

As I stumble around on this strange voyage of healing and discovery, I am finding that a good, kind, caring doctor does more for me than explain the science of my disease, but gives within their sincere and concerned demeanour a validation for all the pain I have felt these past eight years.  It makes it all worthwhile to finally have someone say that it was REAL, that I didn’t over-exaggerate how much it hurt, and that HOLY SHIT, someone really wants me to know that my life doesn’t have to be that way, that I can actually have a life of real quality.

 Dr. Picard had decoded the mystery of the exploding fingertips and I thanked him accordingly for all the time and info he had given me.  I imagine that the real Captain Picard, in response to the possibility of living a quality “Lupus Life,” would say:

“Make it so.”

Bathtubs, Bat Signals & Single-dom (Oh My!)

At chemo on Thursday, I sat beside someone who was diagnosed with Rheumatoid Arthritis when she was twenty years old, the very same age I was when I donned my “Lupus Face.”  At one point, this woman to my left, sitting by her “drip, drip, drip” of the RA miracle drug Remicade, asked me if I was married.  She must have been in her 50’s, her entire head of hair pulled back in a silvery ponytail, her oversized sunglasses slipping every so often down her nose, which she curiously kept on for the whole 4 hours of her IV treatment.  I smiled at her question and shook my head “no.”  I was not surprised in the least when she smiled back, shook her head sadly and said, “yes, relationships are hard.”  

She continued on to describe one night when she approached her now ex-husband and asked if he would help her out of the bath if she chose to take one that evening.  He said yes and so, like many RA and Lupus sufferers before her, she ran herself a hot, soothing bath for her achy body.  When it came time for her to get out of the tub, she called out for her husband.  There was no answer.  She called out again… nothing.  She had to wait three full days for him to return.  Among other medications, she was on steroids and her body went into steroidal shock and withdrawal.  When he came back he said simply, “I was hoping that you would die.”

There is so much more to this story that I didn’t hear and so I choose not to put too much meaning into that dramatic last line.  It just made me sad.  I am sure they were very happy once.  She said he married her when she was already sick, but “I guess you never really know until you’re really in it.”  

My eyes have been red lately – that’s a Lupus thing…you know, inflammation of the eye vessels.  I remember having a particular bad bout of the “wolf eye” when I traveled to Toronto for a conference a few years ago – it took gargantuan inner strength to simply look at people!  My inner voice was working overtime – “surely they think I have a grody case of infectious pink-eye (not at all conducive to any kind of social networking) or I had clearly just been in my hotel room getting high!”  Oh, the drama.  The bat signal (butterfly rash) is out too, I’ve noticed.  Started showing up last week.  I have thanked my rosy moon cheeks for the warning and I’ve made sure I’m extra tuned into the sights and sounds of my body, especially now that I am weaning off “Evil P.”  I’m getting headaches now, nothing major, but enough to send me back to bed for hours.  I feel Chester, my cheeky, chest inflammation monkey, poking at me lately.  Breathing is fine, but every so often he’ll give me zings of pain to carry around in my breasts, just to remind me that he’s still there.  I’m cool with it.  I, of course, understand the need to get a little attention now and then.  

I’m still feeling the affects of chemo today… had to say no to several lovely invitations to venture out into world that exists beyond my fuzzy blanket and the whirring buzz of my little portable heater.  That’s what happens when the bat signal lights up the sky – instead of going out to “save the day,” I know I must stay in.  Obviously, I don’t have a very good track record for doing this, but I am working hard to be a better Superhero.  Don’t they say that the best way to save the world is to save yourself?  Well, most in the city are watching the Pacquio fight, including my parents, so saving the world involves an empty house and I’m thinking, perhaps some popcorn?  Watching the French Film, Amelie, is certainly on the menu – it’s the perfect movie to watch when you hear a story like the one I heard at chemo.  I suppose it’s expected that I would go home, eyes wide open with fear that, oh my god, that could be me, in that metaphorical tub, waiting, waiting, waiting, for someone who will never come.  A previous me would have definitely done that.  Instead, I choose the me that would buy one of those remote control bathtubs that Ed McMahon promoted, so that I wouldn’t have to ask anyone to help me out of the tub at all!  So to all you lonely Lupies (and general humanoids) – Take showers, not baths!  Eat popcorn, watch Amelie (English subtitles, not dubbed, please and thank you)!  Rest, sleep, then meet one of your favourite keepers tomorrow morning for pancakes!  That’s my plan… what’s yours?

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.