Mini-Battle

I felt sick tonight.  Pain gripped the left side of my head, its heavy hand pulling me down into dizzying, nauseous fatigue.  I didn’t want to eat, though my body was telling me I needed to. Napping didn’t entirely work, so I sprawled across my couch, face down, pulling at my hair in an attempt to “stretch out the pain.”  I wanted to call my mom.  I wanted her to kiss my forehead and make me soup while I convalesced beneath my fuzzy blanket.  For a good, solid two minutes that’s all I wanted, until I looked up from my phone and shook my head in disbelief.  These “mini-flare” symptoms have been part of my Lupus life for as long as I can remember.  I know the drill.  I know what to do.

God, being this pain-free has really wussed me out.

I put down the phone and I stepped into a hot shower, where I massaged my head and stretched out my stiff body.  After additional rest, I forced myself to make something appetizing and healthy to eat and then I forced myself to eat it.  I still feel a bit nauseous, but since deciding not to let my pain be my focal point, I feel much better.  My fellow Lupie and lovely “sister keeper” from down South articulated this skill perfectly – “She had discovered and mastered the art of not puking.”  For those of you who are curious, severe cases usually require staying still and an iron will.

I have just finished my first day at the “Lupus Day Hospital;” three days of sessions with health professionals like occupational therapists, physiotherapists and dieticians.  Once I have the energy, I promise to blog about it.  Also, upon the advice of a fellow blogger, I have decided to add “tags” to my postings as a way for my readers to easily find posts about topics of interest.  You will see my “tag cloud” on the right.  Just click on a topic and it will show you a list of relevant posts. I was only able to get through September and half of October’s postings.  Tonight is not the night to finish the task.

So, with that dear friends, I leave you.  I’m increasingly aware that the longer I stay on this computer, the more probable that my “puke barrier” will go to shit.  Tonight’s battle is not entirely won.  Time to sleep.

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.

Countdown to Chemo

Chemo Cycle #2.  8:30 am tomorrow.  Countdown:  11 hours…  I’ll most likely be awake for most of that…  

I shouldn’t be scared.  I shouldn’t even be nervous.  They’ll poke me in the arm and I’ll sit beside this hanging bag thingy for a while and then I’ll go home.  People with cancer have to do this everyday.  EVERYDAY.  It’s silly.  Just silly.  I shouldn’t be scared.  It doesn’t make any sense because all I really want is for the chemo to start working and wouldn’t you think that I would be running to get this second one done because then maybe it would speed up the process??

But, no.  No.  You know why?  Because, I’m scared.  I’m scared because I don’t want to start puking.  Yes, I said it.  I’m scared that the chemo will make me puke.  I hate puking.  I hate it.  I hate it. I hate it.  It’s what happens during and after almost every lupus headache and it’s never just once and even when there is surely nothing left it keeps happening until I am empty, empty, EMPTY and it takes EVERYTHING and I’m left on the floor with NOTHING LEFT.  And God, I don’t know if that can happen right now, because I’m running on empty already.  I’m on the floor already.  I’m okay and I’m holding on, but I am on the floor already, because the chemo isn’t working yet and I have to give it all I got to just BE here, to sound coherent, to fool other people into thinking that it is working so that they don’t have to worry about me, so that I don’t embarrass the people who love me, so that I don’t embarrass myself.  

So, I’m scared.  Fine.  It didn’t happen the last time, so there is still hope that it won’t happen again.  So I’ll hold onto that tonight.  I’ll hold onto hope.  And I’ll try to remember what I said to my 7 year old cousin this past weekend when she confessed to me that she was nervous about dancing in front of everyone at her birthday party:  “It’s okay, it’s actually good to be a little bit scared sometimes.  All you have to remember is to believe in yourself and it’ll all turn out okay.”  Yah.  I give great advice.  I should listen to myself more often.

Next post we’ll get into the thick of it, people:  The particulars of Lupus Cerebritis  and the mysteries of the brain.  The lab rat has been prepped and the trials are about to begin.  Prepare yourself.