SIGN Language

 

I’m really tired today… a week of restless, topsy-turvy, bed-headed non- sleep.  

With no Hepatitis in sight, ma petit foie (that cartoon liver of mine) is easing up on it’s squeaky complaints, but just as Imuran leaves the scene, another kid arrives on the toxicity block.  It’s the “Big M” –  Mr. Methyltrexate; a cancer drug that Rheumatoid Arthritis patients take in lower doses and apparently, Lupie patients too.  And so, the search for a suitable replacement for my old friend Cyclophosphamide (Chemo) continues.  

After going up a whole 7.5 mg of “Evil P” (which is most likely the cause of my nights of non-sleep), I am now holding steady at 10 mg of Prednisone.  I haven’t started the “Big M” quite yet.  I told my rheumatology nurse today that I decided to forgo my other option, Cellcept; the side-effect heavy drug I sidelined in favour of Imuran.  The Big M has it’s own list of sicky-ickyness, but the info sheet claims a bedtime dosage could relegate all the pukey, achy fun into sleepy slumber.  Sure, as long as you can actually sleep.  Of course, it’s stupid to speculate on such things when I haven’t even received a call from the pharmacy to pick up my new bag of goodies.  

“People on Methyltrexate can be flare free for up to one and a half to two years.  That’s what we want, isn’t it?” My rheumy nurse asked as I stared at the Methyltrexate Info Sheet.  I nodded.  Sure.  One and a half to two years.  That’s good, right?  That’s good for a Lupie like me, right?  I had always convinced myself that I was one of the lucky ones…  just a mild case of Lupus, that’s all this was.  I’m fully realizing the extent of my denial.  How can it be mild when I had organ involvement from the very start?  I was never medicated properly.  To Dr. H, my wonderful new rheumatologist, well-medicated means little or no pain.  Me?  I thought properly medicated meant somewhat tolerable pain.  It had never occured to me that a person with Lupus could live without pain even if they were taking meds.  

“Take your time,” my rheumy nurse said reassuringly.  He was talking about the choice between Cellcept and Methyltrexate of course, but I was thinking more about the choice to literally TAKE MY TIME, to take it back, to OWN it, even if it’s just for a year or two.  Let’s make it pain-free.  Let’s work part-time.  Let’s make it MY TIME.

 Yes, please.

I glanced up at the torquoise hospital sign that was hanging above us as we spoke in the corridor.  The rheumatology clinic was in repair, resulting in a temporary change of location in the general hospital.  I had found my way there with slow and careful steps, wary of the queasy feeling in my stomach.  Sick people were everywhere, on wheely beds and chairs, beside me in the elevator… ME in the elevator.  My brain fuzz clicked on, buzzing like a neon sign at dusk.  When I approached the unfamiliar receptionists, that’s when I saw it.  The white lettering on the floating, blue-green sign said:  NEUROSCIENCE.  Out of every unit in that hospital, Rheumatology was moved to Brain Central.  I managed to smile at the cleverness of the Universe as flashbacks of Lupus Cerebritis psychosis filled my fuzz-buzzing head.

With one last glance at the sign, I navigated my way back to the elevator.  Almost immediately, I passed another unit to my right that I hadn’t noticed before:  

SPIRITUAL CARE DEVELOPMENT.  

I smiled effortlessly this time.  Nice one, Universe.

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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.

No Lies, No Filter, No Boundaries, No Fear

Imagine this:  You have been taken hostage.  You are put in a room with the people you are closest to;  your family, your friends, maybe even your boss and co-workers.  You are forced to ingest a liquid, a truth serum, if you will.  This liquid immediately destroys your natural filter, the thing that stops you from saying the thoughts that are going through your brain.  One by one, your captors bring your family, friends and co-workers towards you.  They sit back and watch. Suddenly, the words spill out of you, swift and sharp, each thought spoken out loud at the very moment it is born.  Truths dribble down your chin onto your chest, into their ears, all over the floor.  You are incapable of lying.  You have no boundaries, no concept of personal space.  Your captors put strangers in front of you and you stand inches from their face, touching them as you talk talk talk.  You have no fear.  You dance and sing.  For the first time in your life, you are truly genuine.  Tact goes out the window.  You tell strangers they are fat or that they are “hot” or that they should go to the gym.  You bring up uncomfortable, traumatic past events that haven’t been spoken of since.  Secrets are revealed, unloaded, offered up willingly, purposefully… everyone knows everything.

What if that was you?  How many friends would you have lost?  How many relationships would have been ruined?  What would you have said?  

Well, that was me for 11 days in the hospital.  The truth serum was the brain tissue inflammation mixed with “evil p”  (a.k.a. prednisone (steroids)).  The result came in the form of bipolar hypermania symptoms.  People with bipolar disorder go through extreme highs and lows.  Hypermania refers to the mania when it is very extreme – when the patient is in a highly frantic and euphoric state. Usually, when a patient is in a manic state, they talk excessively and at high speed.  They flit from one subject to another and become very easily distracted. I was told that one day my team of “white coats” came by on their rounds to see me.  I was writing on the white board in my hospital room.  I turned as they entered and started talking nonstop about nothing in particular.  Apparently, they just stood there and listened for a few minutes, looked at each other and then without a word left the room.  I think I vaguely remember that, but the way I imagine it in my mind right now makes me laugh out loud. In extreme cases, someone with bipolar hypermania may experience delusions and hallucinations or act violently. They may also become confused and disoriented.  I briefly touched upon my “Harry Potter/Jesus/Creator Delusion” and you already know that I had given death threats to those closest to me, even throwing things at their heads.  At one point, I sincerely believed that my mother was going to kill me.  I couldn’t remember my oldest friend or my sister or my boyfriend of almost 6 years.  I was very confused and disoriented, indeed.

Some other interesting things happened during my time in the hospital.  The language centre in my brain was quite active, I was speaking Tagalog and French better than I ever had.  My ability to absorb information and learn was quicker, smoother, almost effortless.  For some reason I was extremely flexible despite all the inflammation running rampant in all areas of my body.  When I bent over to touch my toes, my palms touched the floor.  I have never been able to reach past my ankles.  I sang a lot at the hospital.  My favourite Disney songs, Michael Jackson, songs from Sound of Music and Annie.  I took requests.  My master keeper, who is a trained singer and the most honest and critical when it comes to anything vocal said it was the best he had ever heard me sing.  Oh, and we can’t forget all the creepy messages I wrote myself.  I was writing constantly.  I was writing when I wasn’t writing.  My mind was always running, sprinting, falling over itself.  It wouldn’t stop.  It wouldn’t even let me sleep.  When sifting through these messages, I see that I wrote “Let me out!” several times in very strange and distinct writing.  One of my keepers, who has years of experience working in the mental health field, says it was my way of figuring things out, that I was doing the best I could to understand how to take control of my mind again.   Fascinating, isn’t it?  Apparently, my parents bought a tape recorder in the second week of my hospital stay.  Yes, it is true.  The tapes patiently wait for me somewhere in this house, they wait for the time when I am ready to hear them.  My master keeper told me that he recorded a few hours of a night that he calls “the most traumatic night of his life.”  I don’t remember this night at all.  I wonder what “she” sounds like… the “she” that was left behind when I was gone.  I will find out one day, but not today.  Definitely not today. 

As well as manic periods, someone with bipolar hypermania may go into a severe depressive state. This is characterized by fatigue, despondency, and extreme sadness. When the depression is at its most severe, the patient may become silent and motionless. One of the real risks during this stage is that of suicide.  Manic and depressive moods often arise without warning and last for some time- even weeks or months if no treatment is given. Living with someone in either the manic or depressive stage is not easy although they are usually not dangerous to others. However, they may become a danger to themselves if not treated.  During my time in the hospital I think I was more “chipper” than down, although most of the times I don’t remember was when I was violent or on a low, so I could be wrong in saying this.  I am experiencing the “lows” more now that I am at home recovering.  Nothing serious.  I’m keeping things in check.  I haven’t been violent or thrown anything or uttered death threats since my release.  There have been some outbursts, yelling, screaming, crying, but it never escalates into anything physical.  Thank God for that.  

This week is mental health awareness week.  I have been thinking a lot about the millions of people who struggle with mental health issues everyday… even more than usual.  I was on facebook the other day and I caught some comments that a few nurses were writing about a “crazy drugged up patient” who had made a silly or strange comment or command to them.  I know that the nurses didn’t mean anything by it and that they care deeply about their patients and that strange comments from high patients naturally induce some kind of reaction from tired, overworked health care workers, but I had this pang go through my heart when I read it.  That was me.  That was totally me, talking a million miles a minute about things that didn’t make sense.  I am that crazy patient.  That’s how all the nurses and doctors will remember me.  That’s who Elena is to them.  I know I shouldn’t care… but, wow, I really do.  That wasn’t me, people.  And that “crazy, drugged up patient” is actually a really beautiful, rational, intelligent person who is really lovely to talk to.  Sigh.

So, I guess you want to know how many friends I lost from my non-filtered adventures in wonderland?  None.  Yes, I know, I am one lucky girl.  I am lucky that this happened at a point in my life where I have ensured that the people close to me are the people I genuinely love and care about.  I am lucky I had no real dark secrets, just “embarassing” things I guess, but now that I have released them out there, they really weren’t a big deal at all.  I mostly just told my family and friends how much I love them and when I came home from the hospital I even wrote emails to people who weren’t really my friends telling them that I loved them too!  Basically, I am just one big love machine.  I have to tell you that it feels really good to tell the truth, to have no secrets.  It’s liberating.  My filter is back, although I do struggle during my manic episodes to keep it in check.  I do slip up from time to time, even now when I finally feel like the mania is decreasing, but I can tell you that even though I have somewhat of a filter, I find that I still can’t lie.  I can’t do it.  I don’t know if I will ever be able to again.  I’m okay with that… actually, I am more than okay with that.  It sounds like a really good way to live.

Now, you all know that I am a theatre person.  I have told you that several times.  Having bipolar hypermania symptoms plus being a theatre person plus being a gemini plus being a person who naturally tends to have highs and lows anyway is absolutely a lethal combination.  It’s quite laughable, actually.  My dear brother says that my blog is very melodramatic.  Well, yes, I dare say it is, but I hope you all know that everything I say here is sincere, that it is the truth… my truth.  Yes, I use fanciful metaphors using epic story lines and comic books and I start my blogs with imaginary hostage scenarios, but I do that because I am a writer and I love stories and metaphors, high stakes and drama… and I also don’t want you to get bored.  Let’s be honest here, people, my situation isn’t the cheeriest one out there, so if a little melodrama and theatre makes you laugh or smile or helps you relate to what I am writing here, than why not? I just want you to know that beneath all that, all the frills and jokes and metaphorical wonderment, it is all real, that underneath all the mania, the euphoria and the lows, I am real.  I am here.  This is me.  No lie.

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...