Thursday, 27 September 2012

1586.77 smackeroos!

Yup, more than my mortgage payment.   Crazy...  I cannot believe 12 shots costs $1586.77. 

Here's what a month's worth of medication looks like.  These are the cartridges that get filled into the injector.  The needles get attached after these suckers are in.  Anti-climatic if you ask me.

Now I wait for my (free) $1500 "Rebismart autoinjector" to get the job done for me.

After I collected my drugs, my sharps container, bought a lock box for the fridge (because, you know, my kids are crazy, and would somehow find a way to inject themselves with MS drugs), I sat for a few minutes in the parking lot.  A non-descript plastic bag held all this stuff.  I looked like any other shopper (except maybe to the woman staring at me as I discussed syringe disposal with the pharmacist and how big a sharps container I would need). 

It's all unpacked now - all my new gear.  I took a warm bath and had a good cry.  Each day that passes brings a new level of realness to this.  And right now it feels like a sucker-punch to the guts. You know... that slightly home-sick feeling of "how things used to be."  Knowing that my reality - now sitting there in the fridge - is about to start.  It is a bittersweet feeling - I am choosing to do this - to take these drugs.  Choosing to feel scared and worried because of it.  But I know I have to hold onto the hope that somewhere along the road, these drugs will help me. 

And now - this lady is going to have a glass of wine!

Wednesday, 26 September 2012

What would Cathy do?

When I first got this diagnosis I was watching a fantastic show called "The Big C."  It follows the life of newly diagnosed Cathy (cancer, not MS.  And yes, don't worry, I still remember I don't have cancer).  She has become my fictional heroine - for all things d-i-a-g-n-o-s-i-s...

Even though the diseases are so different - the process, the reaction, the emotions are identical.

Who would have thought relating to this character, played by Laura Linney, would provide such comfort and reassurance to me.  To show me, albeit fictional, that shit does happen, but life does keep going on.  And that there are ways I can be in control.  There are ways I can enjoy life, enjoy humour, or even go a little crazy (cause she sure does).  I got to the point where moments of my diagnostic process were prefaced with the thought "What would Cathy do?"  Yes, I actually thought this (sometimes out loud) to see if any voice would answer.  And indeed, my subconscious (and craziness... and sometimes my pal Emily) would start talking.... telling me to pick up the phone, be the annoying patient who always gets what she needs and does not back down.  Be the woman who just needs to escape for a while or the Mom who needs to pretend dinner doesn't have to get made.

So, I am at the point where the bazillion phone calls have been made.  I've used all the connections I could muster.  My prescription is at the pharmacy waiting to be filled, the nurse will be here within the week.  My to-do list has lost a couple items.  God, it feels good to scratch them off.

And for those of you who watch the show, don't worry - I don't have a secret identity just yet! 

Wednesday, 19 September 2012

The drug-decision

Today I had my 10th vial of blood taken since my diagnosis less than a month ago.  Yes, I am counting.

The two tubes today were for my "interferon screen" pre-drug testing.  I will be starting a class of drugs called Beta Interferon 1a - or commonly branded as Rebif.  This drug, which is just one of many to choose from, will modify my body's T cell responses - make them less aggressive and harmful to my immune system.  During an MS attack, my body's immune system gets activated and immune cells (T cells) go into destroy mode.  These activated T cells attach to my blood-brain barrier, a layer of tightly packed cells that normally protect the central nervous system from harmful substances.  When the T cells attach to the blood brain barrier, they are able to squeeze their way in.  Once in, they attack the myelin covering the nerves in my brain and spinal cord.  That signals an attack.  An attack, or relapse, by definition, has to be a minimum of 24 hours, and include physical disability of some form.  My two most recent relapses have lasted 2-3 weeks each.

This drug needs to be injected 3 times a week at home.

And there will be side effects - flu-like symptoms, injection site reactions, liver or thyroid problems (I'll need to really reduce the wine now!), allergic reactions and sometimes, depression.

And, here's the fun part - I get to be one of those people at the blood lab with a freaking standing order.  Yup - all this testing happens once a month.

But - these drugs have been proven to reduce relapses by 1/3 and reduce the number of clinically-definied lesions on MRI.

Once the results from today's blood tests are back, I collect my $30,000 prescription and a nurse will come to my home to train me on giving myself the injections. 

At today's clinic education (aka: pick your drug) session I met a group of newly diagnosed MS patients.  There was a new mom who was only diagnosed yesterday, a woman who has only been living here for a couple months and had no idea what was happening, people who didn't have extended drug coverage and could not afford this.  It's scary stuff.  There is so much real, raw emotion in a process like this.  When dealing with a upsetting diagnosis, you don't immediately think about finances and drug plans, and rotating injection sites on your body.  There is so much to take in, understand, and accept.  Things I never would have thought about 2 or 3 weeks ago.

Emotionally - I think today was my first vividly real moment of sadness.  The tears came as I was driving home.  Suddenly, there I was - looking at my life.  Looking at what was happening, where I was going.  Seeing myself as somebody else - fictional and dream-like.

I am going to allow these feeling of sadness to stick around for a while - I think they will do me some good.  Because, with sadness comes relief.

Sunday, 16 September 2012

My Angel...

Let me preface this post by saying that I am not religious.  I do not go to church or follow any religious script.  And if you feel the same, push the potential cheesiness aside before we go any further. 

I do, however, consider myself to be spiritual.  To believe in something "higher" or "beyond" us.  I don't know why, and I can't say how.  But I know I believe.  I'd like to think there is something or someone out there helping me, guiding me, even protecting me. 

I have felt this feeling before - after Jack was born 5 years ago.   I was 2 weeks post-partum and hemorrhaging, with no pulse, and unconscious.  Raced to the ER, it was as if time stood still.  My body stopped bleeding, my tiny baby slept peacefully while I had surgery - it honestly felt like divine intervention.  Not necessarily God-like, but there was something there.  Something so vivid I can recall the exact feeling years later.

And now, to this day, I can feel it again.  Some invisible protection telling me I can do this, fight this, and stay strong.

I saw this necklace weeks ago, told myself I didn't need to buy it.  Didn't need to spend money on it.  Then, I kept seeing this necklace.  I was drawn to it - over and over again - by pure coincidence.  So, today I bought it.  I felt like this force I have been feeling for years needed a personification.  Something I could grab and hold.

Here she is - my guardian angel...

Thursday, 13 September 2012


“In three words I can sum up everything I've learned about life: it goes on.”
― Robert Frost

And so it does.  For me.  For us.  Life's pendulum has swung full circle, and we are continuing past the diagnosis.  I am now two weeks into my life changes - meditation, therapy, diet.   I feel okay.  I don't think about MS every second of every day.  I can focus on other things, and focus on being "here."  This "mindfulness" has become a necessity for me, albeit still a challenge.  To take that extra second to to just be in the moment.  To look at or listen to something beautiful.  To feel beautiful, comfortable, and okay being in this body.  It is not a natural sensation yet - more like a forceful conscienciousness.

I think this self-reflection is something we should all be doing.

Even 1 hour of meditation; even 1 hour of therapy.  It all helps.

My emotions have still not settled completely.  Honesty - I don't think my emotional cortex has even processed what is going on.  I don't cry - which amazes me - I find I get more reflective and rational.  I intellectualize things - I find out as much as I can about the medications, treatments, diets.  Placing my finger on what I am feeling is hard.  Sometimes there is nothing, sometimes there is anger, sometimes there is so much sadness.

The kids are adapting too:  Jack has started, and loves, Kindergarten.  Oliver, although desperately missing Jack, is enjoying being the centre of attention.  His shy little smile reminds me of this all day long, and that makes me happy.  I am loving the quiet days of just having one child to contend with.  Home-based stresses have been reduced, which is a good start.  One kid is so easy:  sorry, Jack!

If I hadn't just been diagnosed with MS, I'd think this was just any other day.  And I suppose that's a good thing!

Wednesday, 5 September 2012


It's time for me to make some changes in the food and supplement department.  Step one was buying one of those pill organizers/dispensers. I got a flourescent purple one, of course.  It's amazing how diet has been proven to affect our bodies, our minds, our lives.  There have been clinical studies proving that MS patients who take high dosages of certain supplements can reduce the number of relapses they have and/or the severity of them.  That's enough to kick-start me onto this bandwagon.  Whether it actually works for me doesn't matter.  Just being proactive creates my own placebo effect.

Two times a day, said flourescent pill organizer emerges - for 3 Omega-3 gels (gag), 2 calcium horse-pills, 4 vitamin D pills.  Plus throw in all my regular stuff.  It's a lot to remember.

I am lucky that most of the dietary changes that are recommended are things I already follow.  I don't eat much red meat, I eat fish at least 2 times a week, eat beans, nuts, and leafy greens.  I also don't particularly like dairy - yay me and the 'MS-reduced fat diet."  I'll sneak in my peanut butter chocolate ice cream when I can.  According to one article, I need to be "moderate" with my caffeine and alcohol consumption... (cough cough)...Some bad-kid-days it feels like I rotate from coffee to wine!

Some studies have shown a link between increased energy (MS patients typically complain of extreme fatigue) and a gluten-free diet.  My Neurologist says this may not be applicable to me yet (you know, cause I am freakin' exhausted all the time anyway.  Thank you children).  But, I am going to monitor what I eat and start making some slow changes.

My injectable medication won't start for another few weeks, so for now, it's food and pills.  And I need to remember to drink more water!  If you see me - tell me that!

Sunday, 2 September 2012


It's been 1 night of complete alone-ness.  It was time for me to pack a bag and head downtown to a nice hotel, to surround myself with my thoughts, and start this "dealing" process.  I wanted to have time, sans-kids, to think about medication, appointments, and to start imagining life with my new reality.

Instead - how it seems to be transpiring - is time to enjoy myself - drink too much wine, eat too many doritos, watch too much Dexter.  Classy, eh?  And it's nice.  I am not thinking too much about the MS.  I am not thinking too much about my appointment with the nurse on Tuesday for my injection tutorial.  It has turned into a soul-refuel, a chance to relax and unwind, and listen to the silence.  This surprises me greatly.  How have I managed to get to this mental space?  Is it just the chance in location?  The fact that it's just me here?  No kids, no cooking, no cleaning?  Yeah, probably.  But I'll take it.  I'll bask in it for just one more night.

So here I sit - in my giant king sized bed, with, yes, nine fluffy feather pillows.  My view of the city, and the promise of an entre day to treat my soul.

This is a nice feeling.