Goodbye, Evil P

The car next to mine takes a puddle head on, sending a wave of murky water thrashing against my windshield.  I’m blinded momentarily in the blur; frozen somewhere between the muted street lights and the rainy dark.  I find myself caught in the metaphor, blinded by the blur of the movement in my life.  

Two days ago, I walked out of Dr. H’s office entrenched in the surreal feeling that has defined my “post-cerebritis” life.  I was on the very edge of it, looking over, disoriented.  “I’m there,” I thought. 

I’m getting off Prednisone.  

The process will be slow – down 2.5 mg every two weeks if my body reacts well.  My natural ability to produce prednisone has been suppressed, so my vulnerability to illness has exponentially increased.  A heightened level of lupus activity will stall the process, so saying goodbye to Evil P could be a drawn out farewell.  I don’t mind.  I’ve waited this long.  I can wait some more.  I’m one step closer to taking back my body, one step closer to feeling whole again… and that’s all that matters.

Two days ago, something else happened.  One of my keepers had a beautiful baby girl.  I don’t know why, but I feel like I have to mention it because it makes me happy, because it’s another example of the constant “blur” of life – this jolting forward into the unknown.  We do our best to keep ourselves grounded, rooted so we can enjoy the ride and not get lost in the rainy dark of our insecurities and fears.  All he knows is that he loves her… and that’s all he needs to know.   I take great comfort in that love tonight.  It keeps me grounded during this chaotic swirl of time.

The beginning of the end of Prednisone marks a new phase in my medical treatment as a patient and my overall recovery as a person.  With all the changes happening in my life, all the “letting go” I have to do, this is one goodbye that isn’t bittersweet.

It’s just pretty damn sweet.

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.

“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?

The Face and The Case of the Mysterious Brain Fuzz

It is after 2 am in the morning and once again, I am awake.

My brain is tingling, vibrating.  Ever since I left the hospital, there has been this “sensation” around my head, an invisible layer; a halo, that vibrates and travels the surface of my brain.  Sometimes it’s on the left, sometimes on both sides, sometimes just up top, but usually it’s at the back of my head.  It doesn’t hurt… it’s just there.  It’s “loud” enough to distract me, it interrupts my thoughts, it increases and decreases without warning and seemingly without reason.  I call it my “brain fuzz.”  It goes very well with my newly discovered forehead fuzz, don’t you think?  

Around 11 pm, while sitting at my computer, my brain fuzz increased dramatically, very quickly and without warning. At the same time, I felt this surge of energy come in and through my body.  Almost immediately I was moving faster, more erratic, my eyes became shifty, urgently looking everywhere, wanting to soak everything in.  I exclaimed to my dad, who was sitting beside me, “I have brain fuzz!”  He looked at me confused and said, “what does that mean?”  I told him I thought I was having a minor burst of manic energy, nothing serious, but it was surprising how sudden it came on.  He looked at me with concern and asked me if feeding me would get rid of it.  I laughed.  Oh, if only it were that simple.

I basically “sat back” and watched myself for the next few hours.  I am watching still as I sit here typing.  This is a new part of my recovery that I am experiencing.  After two months of navigating my way through very strong, extreme manic episodes, I am now experiencing mania on a completely different level in both frequency and power.  These bursts or I guess you could call them “mini-episodes” are shorter and are less intense, but still bring out a very powerful physical response in my body.  Since these mini-episodes are less intense and require less energy to control, I find that I am not only observing, but I am also able to analyze what is happening, something I couldn’t do before when my entire focus was just keeping “Chipper” or “Evil Elena” at bay.  

The solution for tonight was simple.  I focused my energy on a task.  I went through and organized my papers on my desk.  I updated my “mania journal” in my agenda.  I wrote out my schedule for the week for my parents.  I must have shuffled back and forth from my room to the office a million times.  I kept quiet.  Dad asked me if I needed to talk it out, which is something I did for the first month I was home, especially during breakfast.  My poor parents would never get a chance to finish any article they were trying to read in the paper.  I’d ask them question after question, running from my room to the kitchen in a constant “show and tell” as I flitted from one topic to another.  Quiet is better.  I could also see that dad was a little unnerved and worried about my sudden burst of energy, so I didn’t want to inflate the situation by talking non-stop.  I did find myself releasing some exclamatory remarks despite my efforts.  For example, when my mom came home I exclaimed very loudly, “I’m manic!”  It just slipped out.  

I wonder if the brain fuzz is some strange physical sensation produced by the toxic swill of drugs swirling through my veins or maybe that’s just what “tissue inflammation” feels like.  I wonder if people with bipolar hypermania have brain fuzz too.  What makes it feel more intense at times and at others not at all?  Will it ever go away?  I am also amazed that I haven’t had a headache in all this time.  Not one.  You’d think that I would have at least one, right? It’s strange to me that the inflammation in my brain has not yet translated itself into actual pain… no, it’s just this weird, warm and literally “fuzzy” feeling around my head.  Inflammation equals pain and lots of it – I know this from years of experience.  This doesn’t make sense at all.

So, my lovely readers, I would love to hear some of your thoughts on “The Case of the Mysterious Brain Fuzz” or on any of the other interesting brainisms I have posted here.  I’m Dr. House and you are part of my medical team, remember?  My little brain feels over-saturated these days.  It would be nice to hear someone else’s thoughts for a change.  I never really know if I am making any sense.

Oh, and chemo treatment #3 is on Thursday.  Hopefully, it will be my last…

And for something to look forward to, next time I will blog about my last neuroscience session:  Positive Psychology and The Power of Mindful Meditation.  No mad scientists this time, but the Psychology PhD who taught it unwilling became his own lab rat when he found himself diagnosed with a chronic, incurable illness and was completely paralyzed as a result.  He is now living, moving, breathing proof of what he used to teach to students for years, but never practiced.  Yes, all things continue to fascinate… and after two months at home and not working, I’d say that I’m more than thankful for that.  Very thankful, indeed.