Blurry Face & The Impending Victory of the Battle of the Brain

Just before my master keeper gently hurried me off to the ER that August Long Weekend, I sat on my couch in my beautiful character apartment with my computer on my lap, changing my profile picture on my facebook page.  I was completely unaware of what would happen next, that I would almost completely disconnect with my working mind and brain and body… and yet, looking back, somehow, some way, I did know.  Mind buzzing, I chose to change my profile pic to one that my master keeper had taken of me climbing the mountain stairs that led to the Seoul Tower in Korea.  I’m blurry because I’m running up the stairs in a silly, fatigued stupor, it’s night, the path is dark and it looks like there is much farther to go.  I wrote a caption underneath, “A journey of a thousand miles begins with a single step.  See you at the top!”  I finish it off with a happy face and changed my facebook status to this: “He who has health, has hope. And he who has hope, has everything.”  I then put on my best pyjamas, wrapped myself in my best shawl, put on my red and blue monkey socks (because they were funny and I knew that everyone would see my socks at the hospital, so why not make everyone smile?) and announced that I was ready to go.  It was like I knew I was going to be in the hospital for a while, that I knew something big was going to happen, that whatever it was it was going to be the biggest challenge yet and I entered into it with peace and humour and a certainty that I would get through it, that I would see everyone at the “top” when everything was over.  

In the days after I was released from the hospital, one of the messages I wrote myself was that I must “analyze artifacts of my past.” Completely submerged in my mania, I took over 200 pictures of my parents’ house, confident that upon further investigation I would discover clues that would lead me to my “destiny.”  It was all quite exciting.  It was as though my entire life I was leaving clues for my adult self to find, that “we” were all in on this master plan to help Elena succeed in life and “we” didn’t even know it!  It’s a lovely thought, isn’t it?  I’d like to think that the day I left for the hospital, my future self was smiling at me, leaving me a message of encouragement, telling me that everything will be okay.

The Lupus Society of Manitoba has asked me if they can post a link to my blog on the new website they are in the process of creating.  I said yes.  I called this a “medical blog” when I started it, the chronicles of my “Lupus Life.”  I try to keep it “Lupus-focused,” which is easy these days considering it pretty much defines my world right now.  I am very interested in how it will evolve as my life shifts back into the world that lies beyond the mental battleground I’ve been existing in.  My writing may become less and less interesting to some, the high stakes gone and the smoke and debris of the “Battle of the Brain” just a distant memory.  I am the first to admit that although life feels fascinating to me after all of this, Chipper and Evil Elena definitely spiced things up.  As I get better and better, my friends and family may not feel the need to read this anymore, content that the worst has passed and all is well.  My readers who don’t have Lupus may find that there is little to relate to.  I may find that despite my link on the website, my readers will dwindle as weeks and months pass.  I am prepared for that.  I don’t think I’ll be offended.

I called this blog “Lupus Face,” but when you click on a post, the bottom says “by the face” – the Lupus part is gone.  I set it up that way when I was still very sick and not of sound mind, so I guess you could say that was another message left by my mysterious “future self.”  My “face” looks the way it does because I want it to look that way.  The word Lupus is interchangeable with any other illness or problem I can think of.  I find myself amused that my moon face is the physical manifestation of this, although not entirely surprised at the poetic interconnectedness of my mind and body.  

I’m just another face in a sea of billions, just trying to keep my head above water, trying to find meaning in my life, climbing one step at a time to some unknown destination.  I’m flailing my arms and most times I look like a fool.  I will be your silly face if you like, but please know that I’m blurry and I don’t know much.  All I know is that the Battle of the Brain is nearing it’s end, the flags of victory all but plunged into the bloodied soil.  And as it is with any war, it will ripple on despite it’s “end” in more subtle, silent ways that are just as powerful but much less conducive to epic movie metaphor magic.  This is where the real work begins actually, the “in between,” that time and space between major flare ups.  When you’re really sick you have the luxury of not having to do anything, decide anything because you’re sick – how can you?  It’s easy to be sick.  The harder choice is to be well.

The Soapbox Inquiry

Why am I doing this?  Why do I so willingly hand you my Lupus-related emotional baggage?

Because on September 14th, the fearless, euphoric joy that came with my Lupus Cerebritis induced hypermania flooded my veins, my everything, convincing me that I was a warrior for Lupus and auto-immune disease sufferers everywhere. I lifted my then 94-pound frame onto my little soapbox and proclaimed, “we have the ability to cure ourselves!  Join the revolution, the EVOLUTION!  Help me unravel the mysteries of the brain, of Lupus!  Be my medical team, my Watson, because Lupus isn’t going to beat me and I need all the help I can get!”  I posted it on my facebook page, practically yelling and screaming at people (most of whom were little more than an acquaintance) to come look, come read all the nasty little details of my sickness, come see how it destroys me, come see how it has saved me!  At the height of my mania, I even had designs for t-shirts in my mind, a script for a short video clip reminiscent of Canadian comedian, Rick Mercer’s, rant segment on his satirical news show on CBC, where I entice readers to my blog with a fast-paced, humourous, “motivational speech-esque” soundbite, ending, of course, with a shot of the back of my t-shirt which says, “you can cure yourself!”  I even had ideas about having “side events and projects” connected to the blog.  “Movie nights with E,” for example, where I would plan movie nights here in Winnipeg, perhaps rent out a local movie theatre, for the purposes of watching movies and documentaries that would help me in solving the mystery of what was happening in my brain or of how to live well with Lupus in general.  Readers who didn’t live in Winnipeg could rent these films on their own and could easily join in any discussions I started on my blog.  “E’s Book Club” was another idea, I even seriously approached a colleague of mine to create a documentary of my Lupus Cerebritis experiences.  I already had four video clips and an extravagant idea to send a preview to none other than Oprah Winfrey.  Feeling the utmost feeling of peace and tranquility, I swam joyously in my mania, believing that my blog would create a powerful community of individuals who would help me in this mystery-adventure story of preserving my life.  It was like a game, it was fun and challenging, exciting and exhilarating.  Being that I was on the highest dose of prednisone possible, my energy was at a level I had never experienced before, I felt like I could do anything, be anything.  It didn’t matter that I couldn’t sleep – I was whizzing through my 22 hour days as though I had slept for a lifetime the night before.  I had my arms wide open and I was giving the world everything in my “Lupus Life” after spending almost a decade revealing it to hardly anyone.  

I’ve always been a person of extremes.  I fit the bill of my designated horoscope with laughable perfection.  Yes, I am the Gemini personality who gets bipolar hyper-mania symptoms as a result of Lupus-induced brain tissue inflammation.  Lethal combination, no?  Painfully ironic, no?  Well, I do admit that it’s also pretty funny.  It also makes it pretty hard to figure out whether I’m just being typical Elena or whether the mania is doing the talking, especially nowadays when everything is much more subtle.  So this brings me back to my initial question:  Why am I doing this?  A few weeks ago, I surfaced the waters of my “mania lagoon,” finally realizing that I had spent almost two months thinking that my mental state was completely lucid, when in fact, my mental condition had changed very little from when I was in the hospital.  By re-reading all the emails I sent out and the writings that flowed out of me like a rushing river that had no end, I fell off my little soapbox, landing as though I had just fell off the top of the Eiffel Tower.  I am no longer the 94-pound energizer bunny of the recent past.  The 20 pounds I have thankfully regained has also come with the dead weight of my newly acquired mania-awareness, the “oh my GOD, I can’t believe I wrote that/did that/said that” ball and chain.  No wonder I’ve been living like a hermit these days.  I said I was living a “vampiric existence” in a previous post.  I suppose we could combine the two and call me a “hermpire” or a “vampit.”  Well, whatever reclusive creature I might be at the moment, ironically, I am still blogging.  I hide in my room, but you, my readers, and potentially anyone else in the world with access to a computer, can see me.  I’m still as exposed as I was when I was a chattering little imp dancing on my soapbox.

So, WHY?  If you’re so embarrassed, Elena, then just stop.  If you’re scared now, then delete all this.  Do it. DO IT!!

And holy hell, have I been close… but, holy crap, I just can’t.  I can’t because it would mean that I would be in denial again.  This happened to me.  My brain got sick.  It wasn’t my fault?  NO, it wasn’t my fault. I didn’t mean to do those things.  I didn’t mean to say those things.  I wouldn’t have done any of that if I weren’t sick.  It wasn’t my fault.  I’m sick right now.  I’M SICK.  

I’m healing. 

So, is it that I want you to heal with me?  I know I don’t want you to be sick with me.  I’ve let you catch glimpses into how weak I can feel, how defeated, how close I have been to giving up.  In my “awakened” state, this has been very hard for me.  I don’t know if I want you to know that.  I don’t know if you should know that.  Do I think that you will think less of me?  Why do I even care?

The truth is, I have no superhero pants.  I’m not Xena, Warrior Princess or the White Lady of Rohan or some amazon warrior woman, her armour shining in the blazing sun.  I’m just a girl who spent the whole day in her pyjamas, eating croutons like chips, shuffling around her parents’ home under a heavy fog of fatigue, napping intermittently while battling the incessant nattering of her brain fuzz and it’s constant mental chatter.  That’s the reality, that’s how my Lupus life can be without the aid of mythical metaphors and Hollywood characters.  

I found out this week that I have one more stop on the “Chemo Train of Love.”  In the meantime, “Evil P”  will be weaned off in 5 – 10 mg increments per week until I am down to 15 mg.  Once I am at 15 mg, my blood work will decide what comes next, but it will most likely be in the form of “Immuran,” an immunosuppressant drug.  Dr. H says she wants me to keep taking Plaquenil, the pills I have been taking for the last 8 years, and I will continue with all the other pills I am on to protect my lungs, ovaries and bones from the effects of the chemo and prednisone.  I am happy to know that I have crossed over into a new phase of figuring out how to effectively control and prevent Lupus Cerebritis from rearing it’s ugly head again, but I find myself increasingly anxious about the amount of prescription drugs in my body.  I received a phone call from the rheumatology nurse today, telling me that I should get the H1N1 shot, once the “hypo-allergenic” one comes out in November.  I was surprised because the info sheet for cyclophosphomide (chemo) says that I can’t have immunizations.  I was actually relieved when I read that because it gave me an excuse not to get the H1N1 shot,  an immunization that I don’t believe to be safe.  Furthermore, it’s another strange and mysterious fluid entering my already tired, bruised and inflamed body.  I am conflicted.

I also digress.  I was asking why I am writing this blog. I average 39 readers a day, of whom I believe to primarily consist of my keepers, curious Facebook friends, perhaps a random person or two and hopefully some fellow Lupies that saw my link on a Lupus Facebook Group.  I know… it makes me look pretty silly for freaking out about people reading my blog when so few people actually view it.  I do have to say that I have received some lovely messages from some very wonderful people; some strangers, some very close to me and some of whom I have not spoken to in years, who have told me that reading my blog has effected them in a positive way.  Some even shared their stories with me, a privilege I do not take lightly.  I have met brave, young women with Lupus and other chronic illnesses in this strange, internet universe, who want nothing more than to simply talk, to compare, to discuss.  I have discovered that the need to relate crosses all boundaries, geographic or otherwise, and that you do not need to meet someone to inherently know that they understand and support you.  That’s all we really want, us chronic illness sufferers.  We want to unload without burdening, we want to tell without having to say it all, we want to know that we’re not the only one, that there is someone else out there who I can look in the eye and say nothing, but they would know from the way I walked up to them exactly what I was feeling, what I was thinking.  

I write tonight because of those messages.  I write for my keepers, who encourage me to keep writing, who say they feel closer to me by reading it.  And yes, I write for myself.  It’s the bread crumb trail that I leave behind me as I navigate my way through this dark patch of forest, but not so I can backtrack to where I was, but so I can turn ’round and see how far I’ve come.

Finding the Good in “Evil P”

 

“Evil P,” the dreaded corticosteroid, “Prednisone,” would seem to be just another white pill, encircled by an invisible russian roulette of side effects.  I’ve “won” almost every side effect on the list:  increased energy/restlessness, increased/constant appetite, thinning skin, fat redistribution to face and torso area, hair growth (peach fuzz), swollen legs, mood swings/steroidal psychosis, insomnia, night sweats, fungal infections, muscle weakness, easy bruising/slow healing of wounds, irregular/fast heartbeat, increased urination.  I can count the remaining side effects on one hand.  So does all that make this small, unassuming pill “evil?”  Perhaps it earned it’s evil nickname because of the overabundance of “luck” that comes along with it, that the unfortunate souls who must consume it usually come out with all or most of the side effects it has to offer.  I realize, of course, that I am on a very high dose and so I naturally have more “luck” than those who are on lower doses.  I am presently holding steady at 40 mg a day (from 60 mg).  I have my chemo follow-up appointment with Dr. H on Thursday, so let’s hope my blood work provides incentive to lower it once again.  

I am up to my neck in my own “Lupie Lamentations;” that quick sand of complaints and tears and self-pity.  I’m sick of it.  I am sure everyone else is sick of it too.  They say that if and when you find yourself in the unforgiving mess of a pit of quick sand, you must stay still.  If you stay still, than you’ll stop sinking.  Ok, then.  So, while I am “taking pause” during this, my “Lupian Epic Adventure Story” (roll in haunted forest set and cue creepy animal noises), I thought it would be the best time to focus on the other side of Evil P.  

I took a stroll with my parents in “Assiniboine Forest,” a criss-cross of walking paths set amidst quivering aspens and oaks, tall prairie grasses and recovered wetlands.  Leaves were everywhere and they crunched, crunched, crunched beneath my feet, the sun was beating down on my orange toque, the sky was open, true prairie sky blue, not a cloud in sight.  It was there that I stumbled upon the good side of Evil P.  Every breath I took that day went deep down into the very depths of my lungs.  It didn’t stop 1/4 of the way with a painful jolt, the pain didn’t travel along the nerves of my shoulders up to my neck or accumulate in my right breast until it felt as heavy as a rock.   It didn’t stop my legs from moving, I didn’t have to lean against a tree for a much needed break from huff puffing, chest heaving pain.  Although my knees did hurt a bit, my legs moved consistently and without pause.  Every night I crawl into bed and lie down on my back without so much as a thought, no pain, no struggle, no pillows to prop me up.  I am not woken up by a stabbing pain in my chest or by a gasp of air as my body realizes it does not have enough oxygen.  My chest and my sides up to my armpits are tender to the touch, but that is all.  With the exception of my knees, my joints are not swollen.  The problems associated with my brain inflammation still persist, I am very tired all the time these days (my endurance does not usually last beyond a few hours) and I just found out that the blood clots I found in my veins aren’t blood clots but inflammation of the veins themselves (which can lead to blood clots anyway), BUT I have not been this pain-free in a very, very, very long time.  Three years at the very least.  That is good.  That is very good.

So, there it is:  The Good Side of Evil P.  I know there will be a time when I will miss Evil P, in the same surprising way that I miss my extreme, manic episodes.  I expect the pain to come back, of course.  Next week we will find out if three rounds of chemo was enough to put the reins on my overzealous, destructive immune system.  If so, then the docs will continue to wean me off of the prednisone.  After that, it is quite a mystery to me.  How long will the chemo last if it is deemed effective?  They’ll probably want to keep me on a low dose of prednisone, although I would like to get off of it completely.  As I have mentioned before, I have no other options because I am allergic to all anti-inflammatories.  The docs might get me into an allergy clinic to decrease my insensitivity to those drugs.  I’m not sure what that involves, but I am sure it includes a lot of poking and trial and error.  I’m not too enthusiastic about that, but I will put my super-hero pants on and do it if I must.  

I dream of being drug-free one day.  That statement most definitely beats any and all of the grandiose, psychosis-induced life plans I have been spouting these last few months.  It’s the ultimate impossible dream.  One of my keepers sent me this quote from “Alice in Wonderland”:  “There is no use trying,” said Alice; “one can’t believe impossible things.”  “I dare say you haven’t had much practice,” said the Queen.  “When I was your age, I always did it for half an hour a day.  Why, sometimes I’d believe as many as six impossible things before breakfast.”  I dare say she has a point…

Speaking of “listing rituals,” I started my “Three Good Things” journal two nights ago. So far, I would recommend the practice.  It is a nice past-time as I remain here, suspended in my pit of quick sand.  I will also continue to test myself with attending workshops and events like my neuroscience sessions, observing myself to find out where I am at cognitively, to see where my limits are in social situations, slowly gaining my trust in myself again.  In other adventure stories like “The Princess Bride,” a hero ties a rope around the tree, attaches it to his waist and jumps in, ultimately surfacing with a mouthful of sand and the girl in his arms.  Not sure if such a character exists in my story, but it is clear that in this chapter I have to wait, that I must be still.  I know that my story doesn’t end in a pit of quick sand in the middle of the Forbidden Forest, so I am okay with that.  A little stillness would do me some good.  I have been feeling very tense, uptight… unsettled.  I need to chill out.  I need to find the good in my “now.”  I want to be 5 chapters ahead of where I am.  It doesn’t work that way, Elena.  One chapter at a time…

“Where there is tea, there is hope.”

Apparently when I consume liquids, I bring the glass or mug to my face and as soon as the glass/ceramic edge touches my lips, my eyebrows scramble up my forehead and my eyes widen as though the endeavour was quite surprising.   Well, I do like surprises and I especially like tea… but that doesn’t explain all that, does it?  Oh well, I think you all know by now that I’m a bit of a silly one.

Where there is tea, there is hope” is a saying I saw etched into a tiny, decorative sign in a cute, prairie gift shop in Brandon, Manitoba.  It was the dead of winter, my joints ached, my fingers tinged yellow and purple inside my fists, my chest heavy and inflamed.  I distinctly remember that I had to put on more make-up than usual that morning to quiet the fiery redness of my butterfly rash (hide it, Elena, make sure no one can see).  The saying really struck a cord with me that evening.  Maybe it was because I was so cold and the thought of tea brought me some warmth or maybe it was because it had been one of the hardest winters of my lupus life.  My pain had been relentless.  I couldn’t even remember what it was like to have a “good day of pain.”  I had lost hope of ever getting one again.  It was nice to be reminded that hope can be found in a cup of tea; something so simple, something so readily available, something I have everyday. We get so overwhelmed and exhausted with life that we close our eyes in search of rest and so we miss it, we lose it.  But hope is a little trickster, it’s always there… it’s waiting to surprise you.  

Having a cup of tea is an analogy that people who preach “mindfulness” often refer to.  They say that when you have a cup of tea you must truly have that cup of tea.  Celebrate with your cup of tea.  Your entire focus should be the experience of sipping, of the temperature, the taste, the way it feels as the warmth travels down into your body, the texture and curvature of the mug as it presses into the skin of your palms.  Your mind is actively engaged in tea drinking and nothing else.  Mindfulness is about active participation in the “now moment.”  If you’re showering you should be showering, not going through your to do list or rehearsing the speech you are going to give to the employee you’re about to fire or planning the outfit you’re going to wear once you’re dried off.  The Dalai Lama says that you should enjoy every moment in life, including brushing your teeth.  Be present, he says.  Brush your teeth like you really mean it, people.  The Dalai Lama cracks me up.  

There is science behind what the delightful and wise Dalai Lama says.  As I mentioned in my last neuroscience session blog post, meditation, a powerful form of mindfulness, has been scientifically proven to show distinct patterns of brain activity and mindfulness training can actually start changing how your brain works.  By choosing “mindfulness” over “mindlessness,”  we reduce stress levels, resulting in the creation of anti-bodies, a stronger immune system and something called the “left-shift.”  The prefrontal cortex of our brains houses our emotions.   The “left side” of the brain is the “approach” part of the brain.  It is language and spatial oriented and is the mediator of positive emotions.  The right side is the “avoidance” part of the brain.  It’s angry, fearful, it’s job is to “protect” you and it’s where the negative, emotional states are housed.  This is where mindlessness resides, where our stress festers and boils over.

The Psychology PhD teaching my last neuroscience session asked, “is this happilogy or is it science?”  Well, apparently the best predictor of recovery from a heart attack is optimism.  Other scientifically tested facts include:  hostility increases likelihood of heart attacks, pessimists are more illness ridden, depression and stress lower immunity, psychotherapy lengthens life of cancer patients, family turmoil exacerbates asthma and jobs with high demand and low decision latitude increase coronary problems.  He posed a very interesting question:  Does the pain cause anxiety and depression or are we causing it by a right imbalance?

Positive psychology is the rediscovery of the psychology approach that promotes human flourishing, it studies the strengths and virtues that enable individuals and communities to “thrive.”  Positive psychologists seek “to find and nurture genius and talent”, and “to make normal life more fulfilling,” not simply to treat mental illness.  This type of psychology was moved into the background after WWII with all the thousands of soldiers coming home with severe post-traumatic disorder.  We needed to get these men better quickly, get them back into the work force, there was no time to concern ourselves with general human “flourishment.”  

The Psychology PHD that taught my last neuroscience session on “Mindfulness and Positive Psychology,” shared with us the positive psychology exercise that he feels saved his life.  It’s called “Three Good Things.”  He had shared it in countless lectures as his students fervently took notes in front of him, but he never tried it himself, not until he found himself paralyzed from head to toe unable to speak.  The exercise is simple.  Keep a diary.  Everyday identify and record three good things that occurred and your role in bringing them about.  He said the first time he did it was as he lay there in that hospital bed, he did it silently, writing three things on the inside of his head.  He said that one of his three things was, “well, I’m not dead.”  He asked the class why didn’t he die?  What was his role in that?  I sat there stunned.  I instantly had a flashback to when I was in the ICU two years ago, my kidneys and liver failing from anaphylactic shock, a team of white coats holding me down on the bed as others plunged oversized IVs into the sides of my wrists.  Everything is blurry because I don’t have my glasses, I feel my head nod downwards towards my chest and I am jolted awake by faces and lips moving closer to my own yelling, “Elena!  Elena!  Stay awake!”  I only realized months later while recovering at home with my parents that I was dying in that moment, that the doctors did not want me to pass out for fear that I would not wake up again.  I did not know I was dying the whole time I was in the hospital two years ago.  I had no idea.  I had no doubt that I would be leaving that hospital.  Is that part of the reason I didn’t die that night?  And then it got me thinking about why I “returned” to my body this time?  Why wasn’t I one of the many lupus cerebritis patients that I’ve read about who go into severe psychosis, are lost to their loved ones and then die of complications?  What was my role in that?  I remember smiling in class.  Of course the Psychology PHD had a role in him not dying.  I can’t articulate it, but what he had inside of him that eventually had him talking, walking, teaching that very class is exactly what’s inside of me.  A fighting spirit, maybe?  Will to live?  A knowledge that there is more to be done, that this is not the time?  I don’t know, but I’m glad it’s there.

The “Three Things Exercise” helps promote an internal locus of control, increases positive emotions and develops an appreciation of your role in influencing good things in your life.  The exercise takes discipline and must be done meaningfully, everyday.  When done properly, the exercise produces significant improvement with moderately to severely depressed people.  It is proved equal to antidepressant therapy in degree and durability of improvement.  It even increased relationship and sexual satisfaction in the least positive quartile i.e. in subjects selected for level of emotions.

So, have I tried this exercise, you ask?  No, not yet.  Looking back on my week, I think it would have been helpful if I did.  I couldn’t find hope.  Maybe it was the chemo on Thursday, maybe it was researching case study after case study where the patient dies or never recovers full cognitive abilities (did I mention I kept leaving off the end letter of words while note taking in class?), maybe it was the fact that it was cloudy the majority of the week, maybe it was because it was the busiest week of the year at work and I wasn’t there.  Whatever the reason, I was on the floor again.  I wanted all my brain books to f*** off.  I wanted all my manic emails and messages to disappear.  I wanted my blog to disappear.  I wanted to disappear.  I felt so removed and isolated from everyone anyway.  I felt like life moved on without me.  Doesn’t that only happen when you’re dead, I asked myself as I sat on my bedroom floor… but, I’m alive, aren’t I?!  I rapped on the inside of my forehead – “Hello?! I’m still here, people!!”  

What I didn’t realize during that lovely, pathetic episode was that I wasn’t in my head anymore.  The chair was gone.  I’m back.  I’m here.  “I” am here.  The manic feelings drain away more and more everyday and I feel myself shifting back into the familiar crevices of my mind and body.  I reflect on the last two months and the delusions and illusions of my mania spring up in front of me, sparkling clear, vivid, waiting to be faced, to be searched for truth and more importantly, to be let go.  And I’m scared and I’m shaking like a leaf because I know I need to wade through all that, I need to fully address what happened in order to be in a healthy emotional state, in order to take back my life.  Like I said before, the physical part is easy.  I laugh now at how easy I had it before, that I would trade a million sleepless, painful, chest heaving nights for filthy steroid-mixed lupus cerebritis.  

The good news is that by venturing into the frontiers of neuroscience and brain biology I have discovered that I have the power to change my brain.  I have the power to make this whole thing into the best thing that ever happened to me.  I have a role in whether I live or whether I let lupus “take the penthouse” of my life.  It’s a 24 hour job when you are in the office of health.  It’s easy to forget that you aren’t dead yet.  

A fellow lupie who went through lupus cerebritis two years ago generously offered this advice to me:  Remember who you really are, I guess it’s easy to forget, especially when you hear stories of things you did that you couldn’t even imagine. Don’t lose sight of you.  

Okay… deep breath.  I need to stop telling myself that I don’t know who I am.  At least “I am.”  I am here.  Isn’t that the most important thing?  

And so the battle blazes on and I will keep my eyes open, widen them even, the way I do with every sip, so that I can see the hope in my cup of tea.

Let’s drink to that, shall we?