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.

Gratitude: For The Keepers

Whether you are diagnosed with cancer or diabetes or clinical depression, your chances of recovery, your chances of remission, your chances at a happy life depends on who you have around you.  Your support system.  Your keepers.  During my last neuroscience session, I learned that the survival rate of cancer patients increases by 50% if the patient has at least one person in their life that they feel they can talk to.   And even if you are lucky enough not to have a disease of any kind, we all need people there to “keep” us.  We do funny things when our lives are flung into chaos.  We push people away or we choose one person and drown them because we are too fearful or ashamed to share the reality of our situation with anyone else.  Illness can be very much defined the way Dr. Frankenstein defined pain – you can’t track it to one specific place, it goes everywhere, defies logic, it even exists without a source.  Illness is not satisfied with staying in the confines of one body.  It permeates the skins of other bodies, it stresses their minds,  it takes them in and whether you like it or not, you’ve infected your keepers.  They have it too.

I mention my master keeper in this blog quite often.  He has held this position officially for almost 6 years.  I would say that it was not his choice, since it was I who burdened him with the emotional baggage of an illness I refused to fully reveal to anyone else, but I cannot ignore that he did choose to stay.  I have listened in sadness to dear friends and fellow “lupies” who describe to me their pain and frustration watching lovers and friends walk out of their lives as they lie bed-ridden and in crisis.  I have never lost a keeper.   I am humbled by that every second of my life… and no one humbles me more than my master keeper.  He is on a well-deserved “sabbatical” from his duties at present, living in a land of weeping willows far, far away.  Looking back, we should have known what was coming.  All the warning signs were there.  It’s almost laughable how visible the wolf really was, just waiting, waiting, waiting, right there, right in front of our faces.  But, I don’t really know how anyone can be fully prepared for Lupus Cerebritis.  I am still reeling from the complexity and strangeness of it all, it’s inexplicable impact and power.  It leaves nothing unscathed.  The wolf devours everything:  The body, the brain, the mind, the spirit.  There is no refuge.  There is no rest.  

He will return one day soon and when he does he will hand over the position of “master keeper” to the person who should have had it in the first place… me.  I will never be able to articulate all the things that he has done for me, nor will I ever feel like I have done enough to repay him and I am sure that I will never stop feeling guilty for all the things I put him through.  All I know is that I am grateful for him.  Without him I would not have realized what I do now… that I am the princess who saves herself.

So, today, during Canadian Thanksgiving Weekend, I dedicate this post to my keepers.  They know who they are.  I am here because you love me.  I am grateful for you everyday.  I promise you that I am doing everything I can to make sure you never have to go through something like this again.  

A special mention goes out  to my parents, the two people who have truly been living with Lupus Cerebritis.  They stand like an impenetrable stone wall and everyday they face it, they take it, they wait in hope that their daughter will return to them whole with no conditions, no complaints.  My heroes, my team-mates, my healers.  

And to all of you out there that suffer with a chronic or terminal illness of any kind or if you are someone who is completely healthy but is going through an emotional crisis, remember that your keepers need keepers too.  And caregivers, remember that you deserve a break, that you need to be “kept,” that the best thing you can do for the person you’re caring for is to care for yourself.  It’s a difficult and scary balancing act, I know.  Hardly any of us get it right, but as long as we keep trying, right?  

And so I am thankful.  Thankful that I am “kept.”  And yes, I am even thankful for the wolf.  Having lupus is a gift, albeit a sometimes crappy gift that can explode in your face, but still a gift.  I would not change one part of my tissue-damaged brain.  This is part of my journey.  I was born to live through this.  I was given my keepers so that I can live through this and I am.  I am feeling better everyday now.  I am getting there.  I will get there.  

And keepers, it’s all because of you.

Dr. Frankenstein & The New Frontier

Yes, yes, my friends, it is true.  It was Dr. Frankenstein that led me on my first voyage into the neuroscience frontier.  This Frankenstein however, was female, of German background and interestingly enough, received a degree at the the same university I did.  Dr. Frankenstein has been around this whole time… in fact, she works in the pink buildings across the street from the university.  Life is fabulously strange.  Now for those of you who are only familiar with the more recent representations of Frankenstein, you may be confused since you must think that Frankenstein was the monster and not the man who created him.  In Mary Shelley’s novel, Frankenstein is indeed the doctor, the mad scientist who created without asking the important question of whether he should.  One of my most favourite places in the world is the place where Shelley wrote that novel, the mysterious and beautiful city of Montreux, Switzerland.  I remember walking in the rainy mist along the lake waiting for my hostel to open and thinking, “wow, I totally understand why that story came out of this place.”  I don’t know quite why I thought that, but I digress… sentimental backpacker reflections do not belong here. Although I think that she was doing drugs at the same time, so perhaps I can’t give Montreux all the credit…

“The Brain and Pain.”  I found myself thinking about how silly it was that I am a person who experiences pain on a high level everyday and yet I never ever thought about understanding pain itself.  I just accepted it was there.  It’s part of life, part of the way my body functions, so why even waste the energy on finding out more.  I thought, pain is subjective anyway, it cannot be measured into one sensation and the emotional components make it even more complicated… it just seemed like a useless task.  Oh, human beings and the ignorant bliss they love to keep warm in.  

I won’t bore you with all the technical stuff, but basically pain is a “multi-modal network,” which means that you cannot trace it back to just one part of the brain.  It’s everywhere, baby, it goes and comes from everywhere.  And just to make things more confusing, it even happens when there is no pain source.  There is this chunk of grey matter in the mid-brain that plays an important part in pain control.  Apparently, scientists discovered that if they stimulated that part of the brain during surgery, anesthetic was not required!   This surgery was on a rat, mind you, but still, that’s pretty incredible.  As a side note, I found it very interesting that a cross section of a spinal cord is a butterfly shape… it is also the symbol of Lupus organizations and the rash on my face bears the same name.

Dr. F talked about the different ways of pain control, most of which will not surprise you:  Distraction, Medication, Acupuncture, Meditation and the last resort if nothing works, Neurostimulation.  She shared with us very interesting studies on distraction techniques and about this virtual reality snow world video game that burn victims play when they need to get their bandages removed and changed.  Studies show that those who played the game had significantly lower pain ratings than those who didn’t.  The study also compared playing the virtual reality game to just playing nintendo and it didn’t even compare at all.  The nintendo did very little in decreasing the pain ratings of patients.  Did the virtual reality part of the game make a difference?  Was it that it was a snow world and that the “coldness” helped to counteract the “burn” of their burns?  Psychology and science and technology at it’s best?  Well, it is fascinating at the very least.  

I found the acupuncture portion particularly interesting because I have had two treatments already and I am under the belief that it has helped me greatly.  I feel less agitated and I am finally able to nap more than 10 minutes.  I stay in bed and relax and even snooze till 12 noon sometimes, which is a huge change.  The hyperness caused by my steroids usually has me out of bed right away, literally jumping out of my bed to start my 20 hour days.  My steroid dose was lowered by 10 mg before my last chemo but I am still on a very high dose.  It could not have caused this big of a change.  I mean, my moon face is still expanding and I am growing peach fuzz on my forehead.  What more can I say?  Anyway, studies show that there is an added element to the effectiveness of acupuncture – the power of positive expectations.  Those who had low expectations did not benefit as much as those who did.  They also did this study with a “fake acupuncture” and there was no benefit to either group which means that the acupuncture itself was shown as a valid medical practice.  Well, Chinese medicine is all about positive “chi,” right?  So, if you have negative chi then of course you won’t benefit as much.  Isn’t that the way with everything in life anyhow?  You know, the whole “self-fulfilling prophecy” thing?  If you think it’s going to suck, it will.  So simple, right?  And I am sure this study has made some of you roll your eyes and say, “Oh God, here’s that “power of positive thinking” thing again.  Give me a freaking break!”  Sure, it’s warm and fuzzy and cliche, but I don’t know people… I am starting to think that we have more control over things in our lives than we think… why not our bodies too?

I think that the meditation pain control technique is the most powerful of all.  Studies done with “expert meditators” and “amateur meditators” show without a doubt that meditation not only increases a person’s pain threshold, but also lowers pain ratings consistently.  During the study, the amateur meditators were eventually able to maintain levels close to the experts.  We do have the power within us, the strength within us to heal from within.  It’s just too bad we live in a world where the “easy way” has the rule of the land and discipline has been associated with a hard life devoid of fun and happiness.  I won’t go into the last way of pain control, the one that you can resort to if 1 – 4 doesn’t work, because we all know what that’s all about, getting some machine to do the work for you.  We usually go straight to number five anyway… I mean, who has time to actually try those things anyway?  Isn’t meditation a life long practice kind of thing?  Forget it, right?  Right.

I won’t talk about meds either.  That’s pretty self-explanatory.  And I know that if I talk about it I will start a rant about how absolutely horrible steroids are and how my fuzzy forehead makes me feel like Michael J. Fox in that 80’s movie, “Teen Wolf” or how I am already thinking of ways to cover up the appearance of a steroidal humpback should it appear or that the blood clots in my hand actually make me very nervous and I hate that they happen to be in a spot that ensures that I see them constantly all day.  See?  That was totally the rant I was talking about.

I had a chance to talk to the professor who set up these sessions and he kindly took the time to listen to my situation.  I asked him why my scans didn’t show anything and he said he believed that my situation is more complex and that just as pain is multi-modal, he believes that the damage in my brain is wide spread and more “fibre” based.  Dr. F is part of the research team that is creating these amazing magnetic x rays that have the capability to detect the complexities of conditions like mine… and it’s all happening right here in Winnipeg.  Again, I must say, who would have known?  I was in a building where there are magnets a billion times more powerful than that of the magnetic pull of the Earth.  

And yet, as I marveled at the ingenuity of man, I felt a nagging pull deep down in the pit of my stomach.  It was the very same feeling I had as a child watching Jurassic Park for the first time, discovering in horror what happens when mankind struts arrogantly in the face of nature.  It is the same with our dear Dr. Frankenstein, Mary Shelley’s tortured scientist.  Can we really be sure that our best intentions are just that?  Is that our fatal flaw, our arrogance in the fact that we can, our blatant disregard for whether we should?  Should we even try to battle nature and the diseases that she has chosen in order to somehow regain balance on this dying Earth?  I need to find out more about the  ethics around this whole thing.  For some reason, I feel like stem cell research could be the key in curing auto-immune diseases like Lupus, but I don’t know enough about it to make a comment on it ethically or scientifically.  It is my hope that one day our medical system and society will be one that is preventative and holistic in it’s essence and that the reactive battle that we are waging will have a smaller part to play… but I am a dreamer, my friends.  An idealist dreamer with a screwed up brain.  Who would ever listen to me?

Adventures in Piano Land

I took a stab at the piano today, one hour and a half in the morning and an hour tonight.  This morning was a fiasco.  I had to stop because I was concentrating so hard I gave myself a headache.  I opened up my Grade 5 Royal Conservatory Piano Book to the first piece, welcomed jubilantly by a “WOW” sticker stamped proudly at the top.  The fact that I was “wow worthy” 13 years ago was little comfort as I struggled to remember what all the notes were.  All my earlier piano books and theory were downstairs, so I decided to challenge myself and see if I could remember on my own (hence, the resulting headache).  I could remember the right hand stuff no problem, but the left hand was a complete psycho.  It would end up in the wrong octave or I would start reading the notes as though it were a treble clef.  My left hand was also much slower, there were times where I was concentrating so hard that my eyes would shut from the sheer effort of it.   I would be muttering “Good boys deserve fudge always” and “All cows eat grass” out loud to refocus and remind myself of what the bass clef notes were.  I should have taped myself.  There should at least be some enjoyment and amusement from this whole thing.  I left the piano feeling slightly queasy.  No wonder I never practiced and quit twice… and that was when my brain was “normal.”

I tried again tonight and it went much better.  I think I have almost mastered that first peice.  The left hand still gets a little spastic in the middle part, but my parents say it’s sounding quite good.  I decided to relax a bit more and I allowed myself to laugh at myself.  Well, I was pretty “chipper” tonight, so that probably helped as well.  I was feeling so confident that I flipped to the piece I performed in Festival and tried that out too, but only got through a few bars.  I cannot believe I played this thing at all, much less in front of an audience and an adjudicator or that I actually memorized it, not to mention the fact that you’d have to add the pedal to it too!  I remembered the top half of the first page, but the rest was a total blank.  I can’t even imagine what it would sound like.  If I relearn this thing, then I have no choice but to learn how to drive standard.  Three driving pedals will no longer stir up the fear and anxiety that they did before!

I do find it interesting that my left hand was the weak link in this whole thing, since I have been under the belief that the left side of my brain has the most inflammation.  I know that it would be difficult for anyone to pick  up the piano again after 13 years, even without brain inflammation, but I have a feeling that most would stay in the right octave and not switch back and forth between reading the bass clef correctly to thinking it was the treble.  Can any piano players shed some light?  Do you think that my right hand was stronger for the sole reason that I am right handed?  I recently was doing the “tree pose” during yoga and I noticed that my left side is noticeably weaker and off balance.  My right side was strong and solid.  I went to the opthamologist a few weeks ago and my vision in my left eye has worsened, not because the eyeball itself is damaged, but because the brain is having trouble “uploading” the image.  My right eye is unchanged.  I also wonder if my left side is weaker for the sole reason that I have always believed that I am a right-brained person.  One of the reasons why the piece went so well tonight is because I stopped calling my left hand a psycho and started giving it a little credit… or that’s what I think anyway.  Can we really rule out the corny and almighty power of believing in yourself?  If I start to really believe that I am a left brained person or that the brain isn’t separated at all, will my left side improve?  And how do we prove it when I have so many medications pumping through my veins?  You know that the doctor folk will pat me on the head and say that sure, a positive attitude always helps, but it’s most definitely the chemo that has come to save the day.  And I am sure there are those who are reading this right now and think that the chemo is already working and that my efforts in controlling this thing have much less impact than I think.  And who knows, that might be true.  My ability to process things are not at their best, but I don’t know guys, I just have this feeling that I’m already changing my brain… and this goes beyond the inflammation stuff.  I feel like I am awakening parts of my brain that I wasn’t using before.  You know they say that we only use like 10% of it or something.  One of my keepers sent me a link to this video of this neuroscience entrepreneur (I highly enjoy those two words together, by the way) who talks about this new MRI technology that will allow us to see and control our brain function.  He says that we will be the first generation that will have the opportunity to learn how to control our brains so that we can get rid of things like chronic pain and even control things like our emotions.  Once I figure out how to post it, I’ll share it here.  It’s pretty exciting to hear him talk about it and it really does make sense to me that we would have the power within us to do that.  Why would we have this huge brain in our head if we were only going to use 10 % of it?

And just so you know, even though I took that creepy picture of me and the Time Magazine, I did not read any more of it.  Sigh.  I know.  I’m working on it.