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…