Blurred Words & Past Selves

She flipped through the booklet, looking up and around, it seemed, after almost every word. The letters blurring, blending, and incomprehensible as she struggled to hang onto composure. The plastic numbers fly off the hook as the white coat pops in and out of the hallway executing the daily count. Today, it felt like everyone was speaking in numbers, non-sensical sounds accompanied by papers with checked off tests and endless paragraphs about things she never thought she would have to know. There were so many, too many, these alien words that now, somehow, factor into her life. She closed the booklet. She didn’t want to know.

The passage above could have been about the woman who was sitting next to me as I was waiting at the rheumatology blood lab. The lupus diagnosis booklet was in her hands, her eyes only able to scan the page for a minute or two, before staring blankly into the space ahead of her. My memory of a similar day 13 years ago immediately overwhelmed my senses. Suddenly, before I could even think about why I was moving, I leaned in and offered the woman my email address.

For when you’ve had a chance to process or at some point in the future… if you need someone to talk to, I said.

Looking back on the exchange, I realize that I was presumptuous in thinking that she would want to be interrupted during such a private moment. I was moved by the hope that I could ease some of the panic that comes with a fresh diagnosis, but in the end, it was my past self that I was doing it for; that twenty year old girl who would have given anything to have someone to talk to.

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…