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?

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Into the Fire (Who is the Phoenix?)

Ok, people, I’m back. I scrapped it out with the 7th Deadly Sin; I’m bloody, I’m battered, but I’m back.  And hey, I don’t even need war paint because my moon face scared it off for me.  It’s a joke, people.  Self-deprecating humour helps people relate… ok, FINE.

I won’t lie to you folks.  This has been a rough week. I have been on the very edge of falling into the darkness; the deep, dark depression, that I’ve only truly felt once, in Toronto 8 years ago, at the height of my painful (and unmedicated) arthritic symptoms.  I felt the dark clouds come over me again a few months later when I was first diagnosed and again two years ago when I was forced to move back into my childhood home in order to recover from almost dying of anaphylactic shock, but the memory of that first time kept me on the outer edges of darkness.  I never fully fell in.  The day I wrote my last post, I almost fell.  I was so close I could feel the wet, cold chill of the darkness, like it’s hands came out like waves upon a shore, licking at my feet .  I censored my post to make it sound like I was more upset about the moon face thing, which I truly am, but it was a bit more serious than that.  I don’t mean to deceive you, my dear friends, but you can understand that I didn’t want to worry you to that extent.  I knew that it would pass.  I just needed time, which is why I took a short break from writing here.   Now that I am “back” and I told the creepy depression wave thingies to screw off, I thought that it was okay for me to clarify things.  My keepers may be surprised to hear that I have felt depression to this extent.  I must admit that I am surprised too.  I haven’t, until this very moment, allowed myself to really think about it.  

To make matters worse, while trying to tap dance around depression’s grody fingers, I have also been ON FIRE.  Literally, ON FIRE.  And I knew I would be.  I knew since last week.  I knew that this week I would be really really really really really pissed off.  I spent all of last week mentally preparing for it.  And sure enough, this past Monday came around and yup… TOTALLY PISSED. “Chipper” took a holiday for the entire first half of the week.  She’s shown up for some short-lived good times since then (I’ve decided that Chipper is indeed a female – this makes Chester (male) very happy), but she’s been largely pushed back by evil, fiery Elena.  We have no creative name for her yet.  She’s definitely not a cartoon monkey like 10 year old Elena and costochondritis – she actually looks very human and very much like me.  I’ve called her “the devil” the last couple days, but I don’t think that even that’s entirely accurate.  I will definitely take suggestions.  And where have I been while all this is happening?  Where I always am; even further back, behind a locked door, in a plastic patio chair, “watching.”  I used this metaphor of the plastic chair while talking to one of my keepers today.  I said, “I don’t even get a cushion.  Yah.  My ass really hurts.”  I use the term “I” loosely these days.  There are so many Elenas and monkeys running around, I don’t know who’s who anymore.  Try to find Waldo in THIS morbid scene… I’ll even wear the hat to help you out.  For those younger/confused readers out there, that was a clever reference to the “Where’s Waldo” picture books of old… or maybe kids still “read” those… 

Getting back to fiery, evil Elena or whatever her name is, I’ve always known that she’s existed.  She’s been inside of me for a long time.  She’s never come out full force, though.  Even now, in my manic state, I have been able to hold her back from revealing her true power.  I have to.  My parents are strong people, the strongest actually, but I don’t think that even they could handle her in her true form.  I am not one to show my true anger often.  It usually trickles out of me in modified forms, most often in crankiness and bitchy comments, but I don’t think I can remember a time where I truly lost it on someone.   And believe me people, YOU DO NOT WANT THAT TO HAPPEN.  I’ve said that many times to people in the past and everyone has the same reaction.  Disbelief.  “Sweet, smiley Elena would NEVER get THAT mad at anyone.”  Seriously, people, for the first time I am actually face to face with her, inches away from her fiery face and even I am surprised at her power.  “I” who is “she.”  Absurd, isn’t it?  Yah.  What isn’t these days?

I did, however, allow myself to give into the anger today.  I let it consume me.  I let it take me over during a conversation with one of my keepers… my Master Keeper actually.  There’s a reason why he’s the Master Keeper, so don’t worry about him.  He can take it and it wasn’t directed at him at all.   And even with him, I kept a lot of it in check because when I really wanted to scream and yell it all out, I kept it to an intense whisper for his benefit and for my parents’ who were in the next room.  I don’t know how to fully explain how it felt to give into the fire. I felt more powerful than I have ever felt in my entire life, but also the weakest I have ever felt.  It was invigorating and yet filled me with shame to have to go there, to have to give in.  I have to tell you that I feel like there is so much fire in me, that I feel so “powerful” right now that I fully believe, that if I wanted to, I could really physically hurt someone.  Yes, even in the frail state my body is in, I think I could definitely f*** someone up.  And yes, I just censored that swear.  I might not be working right now, but I am still a role model.  So, kids, swearing for the sake of swearing or using it to describe someone or a lewd act is not good, but there are times where the F word is the only suitable word to describe certain intense feelings of frustration or in this case, what would happen to someone if I physically attacked them right now.  Cool?  Cool. I know that there are those looks of disbelief happening out there in regards to my last statement (about f***ing someone up, not the other thing) and fine, don’t believe me.  It doesn’t matter anyway, because I realize now, after moving away from the edge of darkness, that I have the power to control that.  So, I guess in the end you are right.  I could… but I never would.  Well, as long as I am still present, here in my plastic chair.  The chair was empty in the hospital for a while, remember?  Unfortunately, I don’t have any control of what happens then.  Don’t worry, I’ve gone to a lawyer regarding power of attorney and a living will in case it does.  My parents will know what to do.  They are cool like that.

So ANYWAY, that got me thinking about X-MEN, another set of stories that I find highly enjoyable.  I used to steal my brother’s X-Men comics and read them secretly in the bathroom.  Storm was immediately my favourite female mutant.  Makes sense, right?  She’s the ethnic one in the group, she’s hot, she controls the freaking weather.  Pure awesomeness.  Although I had a realization today that I have actually been more drawn to her best friend, Jean Grey, the powerful mutant with telepathic and telekinetic powers that transforms into the dangerous and even more powerful Phoenix.  Now, I am by no means comparing myself physically to Famke Janssen, the gorgeous actress who plays her in the movies or even Jean Grey, the original comic doodle herself.  I know I’m no Halle Berry, but I could at least pull off the ethnic part of her to some extent.  I find it funny that once again, the metaphor of Jean’s inner struggle with The Phoenix (shown in the pic I attached to the beginning of this post), fits perfectly with the fiery struggle I am having with the Elenas running around in my head, just as the LOTR metaphor fit and the Jesus one fit, etc.  Even the fact that as The Phoenix, Jean was able to resurrect herself after death fits.  We all know that I shouldn’t be alive or present right now.  I’ve been on the brink of death twice, the 2nd time the doctors basically told my mom it was over and this last time, my whole consciousness/being left my body entirely.  And yet “I” am here.  So, who is The Phoenix really?  Is it “me?”  Will my ending be different then Jean’s?  Will I have the strength to harness the dark and fiery power of The Phoenix?  For those of you who don’t know, Jean gains control from The Phoenix long enough to sacrifice herself (well, in the movies anyway, the comics drag it on into other less interesting stories later on) in order to save her fellow X-Men.  She knew the only way to end the pain and suffering caused by The Phoenix was to end her own life, thus ending The Phoenix’s life.  Sad, isn’t it?  Well, don’t be too sad about it.  The cute little cartoon cactus has left the building, remember?  I have a strong feeling that my ending will involve Jean Grey not only surviving, but gaining a new power… perhaps fireballs that form at her palms?  

We will get back to fascinating brain stuff and more medical/physical stuff this upcoming week, I promise.  Yes, I know the emotional/mental stuff is important too, but I have neglected the other side of it a little too long.  I haven’t written in my symptom journal for almost two weeks.  I am still only averaging about 4 hours of sleep a night and that’s an improvement from when I was only getting an hour and a half.  Being awake 20 hours everyday is quite the switch from my “normal” day as a Lupie: Wake up, work, come home, nap for 2 – 4 hours, get up to eat, go back to sleep, repeat (and that’s when work actually ended at 430 and there was nothing scheduled in the evening… so okay, I guess those days wouldn’t happen too often).  I rejoice when I am actually able to nap these days.  Although today was a different kind of day.  I felt more physically exhausted than mentally exhausted for the first time since being in the hospital.  Again, it shouldn’t feel strange to me, because that’s my “normal” state.  I feel my inflammation sitting on the inside of my skin, ever present.  The drugs provide this invisible barrier, but I always feel the pain to some degree, I always feel the inflammation’s presence.  Yes, I can finally reach the bottom of every breath and sleep lying down, but when I gently touch the front and sides of my rib cage with my fingers, my skin cries out with tenderness and pain.  And even my joint pain, which I believed was being effectively controlled by the steroids, is ever present.  My acupuncturist was examining my legs and said, “Oh, your knees are swollen.”  I looked down in surprise and said, “Oh really?  I don’t even feel that.”  I was actually a little annoyed at him for mentioning it.  My knees hurt all day after that.  It’s funny what happens when you are used to experiencing an 8 -12 pain level everyday.  I guess after a while your mind doesn’t even bother registering anything below 5.  Well, I guess I can at least by grateful to my brain for that.  So to sum it up, I guess I could say that it’s all an illusion.  The brain stuff, that the inflammation is “gone”… it’s all an illusion.  So, let’s figure out what’s real people and get this party started.  I have a lot of stuff that needs to get done, so let’s get me better, shall we?

The Final Stand-Off... to be continued...

The Final Stand-Off... to be continued...

Am I a human dreaming about being a butterfly or a butterfly dreaming about being a human? – Chinese Proverb

I am very “manic” today.  I would call it “chipper” but the 10 year old Elena didn’t show up today.  Nope.  Just the cranky, darkly explosive Elena.  She also cries a lot.  You wouldn’t like her.  I know I don’t.  It’s because I felt nauseous all day today, I guess.  I just didn’t have any energy in the reserves to hold her back.  Don’t worry, no puke, but I couldn’t eat very much either.  It was bringing back memories of the two months before I was admitted to the hospital for this thing.  Did I mention I lost a total of 21 pounds by the end of my hospital stay?  

Anyway, I was so tired today that I think I must have snapped at my beautiful, concerned parents about 50 times.  This one time I heard the footsteps of my mom in the hallway and I yelled out “I’m okay!!”  I scared her half to death.  She was probably just on her way to her room and not to mine at all.  Sigh.  I know I need to be home with them right now, but God, I wish that I still had my apartment on times like this; a place where I can hide away and protect my parents from being yelled at for nothing.  I won’t even go into my feelings about being a 28 year old woman living with her parents again, her newly retired parents who should be enjoying their lives.  

I try my best to be quiet on days like these.  I try to keep to myself, read, email.  I am finding that I need to do less emailing.  When I am feeling particularly manic or “hypercreative,” I end up writing long, intense emails to people.  Mostly to my favourite people, but sometimes to those I don’t know very well at all.  I think the latter is where I get myself in trouble and where I end up sounding as crazy as I feel these days.  Now these emails are always full of positive things and expressions of fondness and love, but I am sure the intensity of these emails are hard to receive, awkward even, for some and surely exhausting to interpret.  Great.  Just another way that I am hurting those around me.

When I say “crazy” I don’t mean to insult those who actually have bipolar hypermania.  If I have learned anything in this whole drama, it’s that mental illness is a powerful and horrible thing to have to live through, so much harder than what I have gone through physically with Lupus.  I only have to deal with the physical pain.  Ok, yes, all those with chronic illness also suffer through emotional trauma, but nothing like this.  The stigma, the guilt, the fear that comes out of having a disease in which you cannot control what you say or do, to never know what is to come out of you whether it be tears or screams or threats or joy.  To not know if you could potentially say or do something that would ruin the lives of those you hold dearest, to think that there is a possibility that you could physically harm them… to live with that in addition to knowing that the majority of the population think that you are doing these things on purpose.  That you’re not “trying hard enough” to stop doing and saying these things.  I have found myself thinking sadly of the mentally ill man who beheaded the young man on that Greyhound Bus not too long ago and of the young man’s mother.  How can anyone expect her to understand that the man did not want to do that.  That he is ill, that he was probably there watching inside his head, watching in horror as he did that horrible thing, helpless to do anything about it?  

All my days in the hospital and even now I am standing there too, in my mind, watching myself, trapped.  An outer body experience I guess you could call it, but I definitely feel like I’m still inside my head.  I watched everything, EVERYTHING, watched myself make an utter fool of myself, singing and talking nonstop and kicking walls and screaming and throwing things and threatening… I watched everything, everything except the moments when I left entirely.  Yes, there are whole days that I don’t remember because I literally left my body.  I guess I died.  Well, isn’t that what you call it when your conscious self leaves, when the only thing left is your outer shell?  The only difference is that she was still talking and screaming and throwing things.  But that wasn’t me.  I know it wasn’t.  Because I wasn’t there.  Now, if that isn’t the scariest thought ever, I don’t know what is.  But it wasn’t a thought people – it happened.

I came back of course, somehow.  I’d like to think it was the love of those around me that awakened me.  It sounds more beautiful that way.  The doctor folk will probably want to say that it was probably the mix of drugs that did it or something.  My brother says it was like I was on LSD, that I was on some psychedelic trip.  Perhaps I was.  At the current moment, I don’t really care.  What happened next was that I started to figure out how to control the different Elenas that sprung out of me from moment to moment.  It was slow, too slow for my liking, so I did have my share of outbursts, but I quickly learned that those outbursts would not get me out of that hospital room.  I forced myself to calm down, to be strategic in controlling my symptoms.  I figured out that one of my most obvious symptoms was talking nonstop, so I learned to be quiet and listen.  Eventually the doctors started to feel better because they were noticing that my behaviour was improving.  They started letting me out of my isolation room and eventually they released me, but they did it because they thought that the steroids were improving the inflammation in the brain.  When they decided to release me they hadn’t even given me the first dose of chemo yet.  And as I have established in my previous posts, my bipolar symptoms are largely unchanged at the moment because the chemo hasn’t kicked in yet.  They say it takes 6 – 12 weeks.  We’re on week four and a half, I think.  And yes, the steroids have been fabulous in eradicating my arthritic and costochondritis symptoms and giving me my appetite back.  I can’t even remember feeling this pain free for this long, but the memory loss, the bipolar mania symptoms, the OCD, the vision loss in my left eye, the brain “fuzz” sensation I feel around my head, the cognitive blips… they are still there.  And they were there when they sent me home.  I fooled them into thinking I was better.  I had to.  I knew I would never get better in there.  And they would never take my word for it alone.  They needed proof before they released me and through their scientific reasoning they must have reasoned that the steroids were finally doing a good job on the whole brain thing, or starting to anyway.  Or I could be wrong, who knows.  Maybe they could feel that I could deal with this at home now.  Maybe they believed in me instead. I think I’d like to choose that ending.  Did I mention that the steroids, in addition to making you an insomniac and a moon-faced freak, it also aggravates and brings out bipolar-like symptoms.  I think you’re starting to see that, I’ve got a lot of things working against me here.  And it’s not even the drugs that are the worst of it, it’s that essentially, I am in a battle with myself.  Constantly in battle with these distorted versions of myself.  I don’t even know which one is real anymore.  I don’t even know if a “normal” Elena exists.  Maybe she didn’t come back at all.

I had a moment of fear today that I am actually bipolar.  There is nothing in existence right now that can prove without a doubt that I have inflammation in my brain.  The prospect of knowing that I possess the actual mental illness, that I was not the lucky one who only has to deal with this for a short time, it was paralyzing.  And I still sit here paralyzed.  Paralyzed at the thought of it.  

I don’t think I’m that strong.

Enter the Wolf (Wo)Man

I guess this is where you need some background info.  Right.  Let’s get to it.  The steroids are keeping me up again and there is some small animal outside my window eating my garbage, so we might as well.

Lupus:  The Disease of a Thousand Faces.  Also, the latin word meaning wolf. Think Professor Lupin in Harry Potter  – you know, the professor that turns out to be a werewolf.  That J.K. Rowling really knows her imagery.  Anyhow, the earliest known medical use of the word “Lupus” in English literature appeared in a 10th-century biography of St. Martin, who had lived in the 4th century. “He was seriously afflicted and almost brought to the point of death by the disease called lupus…..”  According to some of the research I have done, descriptions that fit symptoms and signs of lupus have appeared in old Indian Vedic literature dating back to BC (before Christ) times.  At first, they thought that lupus was a manifestation of tuberculosis and was limited to skin lesions, but the medical world soon found out that lupus was an entirely separate (and complicated) disease all on its own.  Apparently, it’s called lupus because it “devours the part affected.”  Makes sense, but not entirely pleasant.

Ok, so basically Lupus is an auto-immune disease, which means that people who have it have crappy immune systems.  Now, you’d think that means that our immune systems are crappy because they aren’t strong enough, but no.  That’s right.  Lupus patients have immune systems that are too strong.  Brilliant.  I know.  The white blood cells are so into killing the bad cells that make us sick, that they start to get trigger happy and start killing all the good cells too.  This causes inflammation in the body, which causes symptoms like arthritis and if it gets really serious, it damages organs.  Ok, so this is where we get to the different kids of Lupus.  There’s the kind that only affects the skin and then there’s the kind that occurs because of a drug reaction and there’s the one that affects the organs.  That last one is called SLE: Systematic Lupus Erythematosus.  That’s the one that I have, of course.

Alright, so now that’s out of the way, now I can update you on the lab rat.  Me.  Officially diagnosed at 20 years old.  8 years ago, if you want to be exact.  My parents and I have figured out that I started exhibiting symptoms as a teenager, primarily with what is called the “lupus headache.”  I was even hospitalized because of the severity of that.  I had to get a spinal tap for that visit.  My first one and unfortunately not my last, but more on that later.  

My primary symptoms are arthritis (everywhere, no joint has been left untouched), raynaud’s syndrome (yellowing of hands and feet when in cold temperature – it’s like having frostbite all the time – it’s great), lupus headache of course and all the other general fatigue stuff.  Oh and we cannot forget about the lupus rash; the “butterfly rash” that occurs on the face.  Mine comes out like a bat signal whenever I’m about to flare up.  

Flares are what they call it when the lupus comes out to play.  “Enter the wolf man,” if you will.   I have had three major flare ups in the last 8 years that have landed me in the hospital:

1.  Pericarditis:  The lining of my heart was inflamed.  This resulted in my diagnosis, but it wasn’t right away.  At first they thought I had rheumatoid arthritis and my doctors didn’t even bother to tell me that they found out that it was lupus instead.  I read it over their shoulder on my chart and had to ask them about it.  Nice.  But more on that later.

2.  Costochondritis:  The tissues connecting my ribs to my sternum are inflamed.  By far, the most painful of all my symptoms.  I had an allergic reaction to Celebrex and I almost died of anaphylactic shock.  As a result, I cannot take any anti-inflamnatories (NSAIDS), which takes out a whole segment of medications that have mild side affects leaving me with limited options… primarily the dreaded Prednisone (steroids, and no, not the kind that Arnold takes, but I would say they are probably worse).

3.  Lupus Cerebritis:  When lupus devours the brain.  Ok, fine, we’ll say that the brain is inflamed, causing all sorts of lovely things to happen.  That’s what’s happening now:  The Battle of the Brain.  I won the Battle of the Heart and the Battle of the Body and now we’re on the final frontier.  The last battle.  The big one.   You know, like in Lord of the Rings.  If I lose this one, we’re all screwed.  From what I have researched, this is pretty rare.  Only the real lucky ones get this one.  Usually, it’s the kidneys that get it.  I’ve spent the last 8 years mentally preparing my kidneys for battle and I get the brain thing.  Lovely.

Note: All major flare ups happened in the summer.  Interesting and worth noting.

So there you go – coles notes version of the “Life of the Lupian Lab Rat.”  Howl to the moon, baby, howl to the moon.  Oh, and speaking of the moon, I have a “moon face.”  That’s what happens when high doses of steroids redistributes your weight to odd and wonderful places like your face.  Yes, the face that already has the batman signal on it and yes, it is the same face that will probably be lacking hair on top of it because of the chemo… the same face, people.  The bald face/moon face/butterfly face extravaganza.  Come one, come all!  And yes, I will show you.  I can’t call this blog “Lupus Face” without showing you my face, can I?  Now, if only I can figure out how to do that on this thing.

It is now 3 am and I am still wide awake.  Another great thing that the steroids does is that it makes you hyper.  Yes, even if you have about 3 months of sleep to catch up on… it doesn’t matter.  It defies logic.  Oh, and it makes you hungry ALL THE TIME.  Much like the small animal outside my window who till now continues his feast…