School's out for summer!

This little face just finished Kindergarten.

He has his first wiggly tooth.

He has learned and excelled so much this year. 

He is coming into his own.  He's got a little personality, likes and dislikes.  He loves Lego and superheroes, talking non-stop, and playing like a maniac at the park.

As I sat through the year-end assembly - listening to the older kids speak, the little kids sing, then watched Jack say goodbye to his teacher, I just couldn't contain my tears of pride, excitement, yet sadness.

The year is done - my boy is growing up so fast.  Days like today I really learn to slow down and let it all sink in.

Today was Jack's day, and I am so proud of my boy.

Out with the old...

Nothing beats a good reorganizing. 

A clean summer start.  A new collection of Rubbermaid bins to sort and stack.  I've been meaning to go through my "random piles of kid stuff" for some time now. 

The school year has come to an end for Jack and there is a large pile of Kindergarten mementos I know I'll want to save for decades.

Time for a haircut for the boy.  Trimming of the nails.

A trip to the dumpster for Oliver.... it was time to let go of all the bottles and baby stuff.  He proudly walked everything there, nodding with delight that he was a big boy now.

Sometimes a good clean is the most cathartic feeling on earth.  It's an easy accomplishment that takes away that extra stress-inducing clutter.

This freshness is nice.  Plus, it's a lot of happy-tears memories:



The most precious baby booties (don't worry - I saved them)
 

"But you look good..."

If I had a dollar for every time I heard that.

People say it when they find out I have MS.  People say it if they haven't seen me for a while.

And it seems to be happening a lot lately.

It's a quasi-compliment.  The unintentional flattery, to me, becomes that much more obvious.  It's as if I am supposed to look bad.  Sick.  Unhealthy.  In need of assistance.

And I want people to know - most mornings at 7am I stand in front of the mirror, already exhausted, trying - so hard - to look good.  To look normal.  I make a concerted effort to do my hair, put on some makeup.

I do it mostly for me; it makes me confident and well put together.

But I also do it for those who like to comment on appearances.  Because, honestly, I don't want to look sick.  I don't want those uncomfortable questions to be asked.

But - and here's the most difficult thing to write - just because I look okay, doesn't mean I still don't need help.  Could I use a couple hours without my kids on a regular basis?  Yup.  Next time you go to Costco, could you pick up a frozen lasagne for me?  Yes please.  I don't want to sound greedy or lazy - I just want this information to be available for those who want it.  And.believe me, I am so grateful for everything that has already been done for me.  So incredibly thankful.

It's so hard for me to ask for help.  Sometimes I just need people to do things.  Without asking, begging, reminding. 

Cause there's a lot going on that my looks just don't share.

Today's music moment:

Not just a pretty face, musician Dominique Fricot is my newest go-to-guy for emotional purging.

As you know - music is a big part of this process for me.

His lyrics make me think.  They tell a story I want to listen to.  They make me want more.

Can you hear the Vancouver reference in my favourite, Haunted by Love?:

The song is about a break-up - love lost - yet it resonates at a level abstract enough to show relevance to us all.  I particularly love this:

"Nobody's happy, nobody's healthy.  Only the headless ride horses"

Show the man some love, and check him out here:

http://dominiquefricot.com/

The (un)mentionables...

Almost two months on Copaxone, and I feel like rewriting its accompanied 10-page booklet of potential side effects.

Let's start with... acne.  That dreaded word I haven't heard in decades.  It's me and the 14 year old boys fighting it out down the zit aisle.  Many dollars later, it hasn't changed.  I've tried toothpaste too.  Nothing.

And to top that... weight gain.  In that special little area I haven't thought about since my birthing years.  The mid-body tire.  Just enough to make everything fit just a little too snug.  Enough to make me covet those disgusting maternity pants I lived in for months.  The inheritance of my Grandmother's hips.  The Mamas out there know exactly what I am talking about.  I am eating perfectly - lots of whole foods, greens, berries, "safe for MS protein" - yet alas, no change.  The wine, which is needed for desperate times, is still here, of course.

----

In case you hadn't heard, some lovely friends of mine decided to nominate me for Walmart's "Mom of the year" contest.  I was completely flabbergasted.  So flattered.  Yet can't help but feel undeserving of such an honour.  I have read through the profiles of some of the other Moms, and am blown away.  These are some fantastic Mamas!  What a compliment to be included alongside them.

Thank you, Ina and Pam, for your humbling words and love.

Click below if you'd like to read it:

Neuro-update

Today was check-up day.

I had the chance to talk with my Neurologist about my stable brain MRIs, my recurring relapses, and where-to-go-from-here in terms of medications.

He confirmed what I had expected:  All of my recent, and constant, disease activity is spinal cord, not brain, related.

So, back I go to repeat cervical and thoracic MRIs to compare with my previous ones showing disease activity at the cervical 4 level.

Because all of my physical presentations in the past year (and everything except for the initial disease presentation four years ago) have either been spinal cord or optic nerve related, we are testing again for Neuromyelitis optica.  Better know as NMO, it's an interbred-cousin of MS that only affects the spinal cord and optic nerves in terms of disease activity, but brain lesions can also be present.  This is a very uncommon form of demyelinating disease, but we need to repeat blood tests as NMO has a very different treatment course (and in fact MS treatments can actually cause NMO to worsen).   I had these blood tests last year, but they only have a 60% accuracy rate when a negative antibody response is seen. 

Mostly likely, they will be negative again.... and this will continue to be the plain-old-variety of MS.

I am going to stay on Copaxone for at least 6 months so we can fully assess its efficacy for me.  We reassess at that point.  And then, if I am still having frequent relapses, my Neurologist wants me to consider Gilenya (an oral medication - not the highly touted Tecfidera that just came on the market), or in the future, Alemtuzumab, which has historically been used to treat Leukemia, but now is focused on MS as an "immune re-boot."

So there you go.  Back to life now...

No changes

Ironically, the day before my MRI results and check-up appointment with my Neurologist, I get a letter from Radiology with the findings from my last MRI.

Essentially:  No changes.

I know this can be interpreted as good:  As far as my brain goes (I didn't repeat the spinal cord MRI this time) things are the same.  Not worse.

But here's what I am feeling:  Nine months of injecting myself and two rounds of prednisone, and nothing is better?  I am the same as I was when I got this horrible diagnosis; my brain is exactly the same.  Every little lesion, dozens of them, including the big one in the left hemisphere, is still there, and measuring just the same.

I assume this means we continue along and see how the Copaxone does in the long term.  Then MRI again.  But, perhaps it means we switch to something else - we had talked about something with better stats at reducing relapses and preventing new lesions (Tysabri), or the newest oral medication just released in Canada (Tecfidera), which my extended health plan makes very difficult to obtain.

I've had 4 relapses in less than a year.  Before that, nothing for almost 4 years.  I want to know what's going on, why it's getting worse, yet why my MRI results are exactly the same.  Some lesions become permanent, and are always visible on brain MRI - so the same symptoms appear and reappear.   Perhaps that's what's happening?   Or, perhaps my relapses are more spinal cord related, and it's time to MRI that area again?

Once I meet with my Neurologist tomorrow, I'll know more.  I have a list of questions written out, and am planning on taking every last second of my appointment time.

Sure, I feel disappointed. 

I'll stare at my syringe tonight - with loathing - and wonder why I bother.  Why I go through this every single day.  Why I chose to start this very intrusive regime for the chance to improve my health, improve how I feel, improve my MRI findings.

And now I know it's done nothing to help. 

But, you know what... I still have to do it.  There is some part of me holding on to the idea that I just need more time. 

Just more time...

----

I am focusing on taking this news in stride.  I had an amazing day with my littlest boy and one of my most favourite friends in the world.  We drank coffee, ate muffins, chatted, and walked.  And it was perfect. 

This dear friend, Pam, is getting married in August, and sharing her happiness and joy really makes my heart smile.  I cherish each moment I get to spend with her.

She took Oliver to make his own button at The Regional Assembly of Text, on Main Street in Vancouver.  It was hilarious, yet oh so endearing, to watch.  I love these two:

Filling the void?

They say when you get diagnosed with something, you rush to do all the things you've never done...

Filling the voids; crossing items off the bucket list.

Doing things now, at this exact moment, rather than planning far into the future.

This has been problematic for me lately.  I go through these stages where I come up with something that will make this diagnosis disappear.  Something that will mask it, make me forget it, and re-focus me onto something other than MS.

But it's a double-edged sword.

Yes, it's good to not be MS-centric.  And it's therapeutic to enjoy things that may have been forgotten through the busy last few years of life.

But, it also places way too much importance on things that I don't necessarily need to fill this "void."

In all honesty - I don't need anything.

It's easy to forget about the constants in my life - especially my kids - when it comes to enjoying the littlest things.  It's easy to forget how hilarious it is to watch my boys dance, to watch them seriously barter cookies for gummy bears.  One of my favourite things to do is just watch them - when they don't know it.

So, I wonder - why is that sometimes not enough?  Why do I have this constant brain-badminton about getting a puppy or planning a holiday or finding a part-time job?

Why is it a struggle to just be happy, as is?

It's hard for me to admit this is an issue.  Even simply recognizing it took an evening of those crazy-tears nobody wants to see. 

And as cliché as all this is - sometimes all you need in life is what's staring right back at you.