The controversy of life and death

It's a controversial elephant in the room, but it is deserving of thought and conversation.

The topic of assisted suicide comes up in life, the media, and now government - again.

Elayne Shapray has had MS for 30 years, and, as it often does, has progressed to the point of severe disability.  This incredible woman has been a champion of MS research and advocacy for many years.  Usually also being the top fundraiser at the Vancouver MS walk each year.  Now she has chosen to fight this difficult legal battle - for all people suffering from debilitating diseases. 

As you can see in the video, this issue is not new in Canada, or B.C., yet when it touches home like this, it makes you think differently.

Until you are faced with these life situations yourself, it's a non-issue.

The right to defend your body.  Your life.  Who gets to make that decision?

See the latest CBC coverage here.

20 questions

Copying my son's grade 1 routine for show-and-tell, plus responding to cries of tell us more about YOU...

Lists and questions:  two of my favourite things!

Here goes.


1. The book that changed my life:  "The Alchemist" by Paulo Coelho.

2. The quote that keeps me sane:  "This too shall pass."

3. The best advice I’ve ever received:  Always tuck away a little "fun money."

4. The film I’ve watched again and again:  Love Actually.

5. The song I want played at my funeral:  Pass In Time - Beth Orton;  Sweetest Decline - Beth Orton;  Shake it Out - Florence and the Machine.

6. The scent that evokes pleasant memories:  The soap my Grandma used to use - plain old Ivory, I think?

7. The piece of furniture that will become an heirloom:  Does anyone want sharpie-covered Ikea crap?  My favourite David Hockney painting from Saltaire, UK.

8. First job:  *cringe*.... Fairweather (clothes) at Richmond Centre.

9. Favourite item in wardrobe:  My Tiffany horseshoe necklace.

10. Pet peeve:  Noise.

11. Greatest accomplishment:  My kids.

12. The gadget that I can’t live without:  Laptop, cell phone.

13. The item I’d save in a fire:  (excluding people, of course) My boxes of mementos.

14. The characteristic I like most in myself:  Being organized (!)

15. The characteristic I like least in myself:  Impatience; bossiness.

16. The last time I cried:  The ugly cry:  While watching "When I Walk" at the Vancouver International Film Festival.  The regular cry:  Pretty much every day!

17. It was the best of times...:  Moving overseas completely alone in 2001.  It prepared me for everything else that came in life.

18. It was the worst of times...:  When my step-Dad died in 2002.  I didn't get to say goodbye. 
When I was diagnosed with MS in 2012.

19. The person I call when things go pear-shaped:  I am lucky to have lots of listening ears... But I'd probably start with my mom and sister.

20. My death row dinner:  Turkey dinner.  Extra stuffing, extra gravy.  With lots of wine...

The kindness of a friend...

...strikes again.

And it never ceases to amaze me. 

Melissa, who I have known for a long time, understands what MS is all about. She grew up with her Mom's MS. 

She gets it.

Today, she filled my freezer.  Just because she wanted to.

She is a genuinely thoughtful person, who never takes no for an answer.

Thank you, Melissa, for telling me to stuff it, stop making excuses, and just let you help me. 

Blogging with wine

My first installment of blogging with wine is brought to you by Nk'Mip Cellars (not a sponsorship, of course; just my drinking it).  A complex, fruity, dry pinot blanc, from the desert of Osoyoos.  Delicious.  

Moms-needing-to-drink, take note:

It's time to drink wine on a Wednesday night.

Ironically, or not, three years ago today I was cradling a brand new baby Oliver.

I remember waiting for my Mom to come watch Jack - cause, you know, I needed to go have a baby.  She was out car shopping.  And late.

I remember pacing the halls at the hospital, willing this kid to come out of me.  Only ending up begging them to break my water and get things moving.  But I did it; fast and drug-free, I may add.

Oliver is my miracle baby - who was never supposed to happen.  After my hemorrhage and uterine artery embolization after Jack was born, I was left without blood flow to half of my uterus and was told I'd never have more children.

And then there were two...

(God help me).

So, to you, Oliver, I raise my pinot blanc, forget about how exhausted I am, and thank you for being my (generally) well behaved, fun, happy little man.

Happy birthday, baby!

Laugh!

The moments of my day that make me laugh.  The things that make me smile and secretly chuckle to myself - those are the moments that are worth a million bucks.

It still fazes me that I own two of these, in rotation.  And buy them for $4 every month or so.  It's as close to junkie as I'll ever feel.   And the looks from the other customers in the pharmacy as I buy them are priceless...

And out of the mouths of babes... "Mommy, boys have penises and girls have vases."  Said with complete and utter seriousness.  This boy's going to have some lucky, lucky girlfriends...

The altered "chore chart" that mysteriously had $106 added to it.

Sometimes I forget how important laughing is.  And how finding it in the teeny tiny everyday things makes it that much better.

Now go, laugh.  Find something silly and enjoy it.

Don't mess with the spinal cord...

Sometimes the appointments go fast. 

And sometimes the appointments leave you with decisions.  Choices. 

Choices that will affect how this disease will take its course.

My leg still isn't feeling better after my falling-down-relapse last month.  But, the relapse itself is done.  What I can feel now is residual damage.  Damage that will probably stay.  Each relapse I have adds a new layer to this mess we call MS - and that's how new symptoms become permanent ones I live with every day.

And like clockwork, that becomes my new normal.  Re-adjust and move on.

I've mentioned before that most of my relapses are caused by the large lesion in my upper spinal cord.  That hasn't changed.

Those frequent occurrences plus the permanent damage from my relapses, means it's time to get tougher.

My Neurologist's approach is one of "zero relapse tolerance."  When dealing with large spinal cord lesions, if you have repeat relapses on a certain drug, it's time to get off it, and try something else.

You don't mess with the spinal cord.

I've tried two drugs so far.

We are going to give my current medication another six months and another MRI - and if there are more relapses, new symptoms, or any changes to my MRI, we switch again.

We move onto a second line therapy drug.  Right now - there is only one option that fits for me.  It's a pill, which is nice, but it scares me.  It's called Gilenya.

My Neurologist, who takes a very aggressive approach toward treating MS, understands my concerns, but replied with "Well, you need to decide... are you more concerned about your disease progression or about the drug?" 

I already know the answer to that.  Always have.  I tend to take an aggressive attitude toward this too.  But switching to something with more complications, risks, and potential damage really terrifies me.  Then again - waking up tomorrow and not being able to walk probably scares me more.

Thankful

I do feel thankful this year - I think I always will.

For the important, the mundane, and the silly things in life.

I am thankful for my boys (exasperation included) and my family.  I am thankful they are healthy, full of adventure, and happy.  And I am thankful there isn't quite as much pee on the toilet seat as there used to be...

I am also thankful for when I get to sleep in.  Or nap.

I am thankful for my friends.  For laughs, company, and grown-up conversation.

I am thankful for good food; wine; lipstick; a nice new pair of slippers.

I am thankful for our healthcare system, my wonderful doctors and nurses, and my $30,000 worth of medication - all for free.

I am thankful for good books, good TV, and amusing, junky social media.

I am thankful for being able to focus on my kids and my health - without the added stress of work and commuting.  I am lucky we can afford to do this.

All things considered, I'm a pretty fortunate gal.

Happy Thanksgiving everyone!

Overwhelmed

Sure, we all have issues.  Problems.  Annoyances.

It feels like mine have been multiplying lately.  The word grumpy was even used to describe me yesterday (which I fully agree with).

And I admit it - I feel like life is eating me whole; and winning the Sarah-buffet.

Being 100% responsible for getting two whiny, stubborn kids out the door, getting them to and from school and activities.  Entertaining the little one while big brother is at school.  Cooking, cleaning, driving, organizing, scheduling.  It's exhausting. 

I kind of miss working.

Right now:  It's 4:15....  We've been home from school for a bit - bags are unpacked, snacks have been had, now the craziness ensues.  Oliver already has no pants on; Jack is in the corner practicing his dog calls, or something else humans shouldn't be able to hear...

The are vying for my attention... "look, look, Mommy look, Mommy, MOMMY, MOMMY,  MOMMY I SAID LOOK AT ME NOW!"

And it's time to cook dinner...

For me, now we add the MS.... So, basically, more crippling exhaustion, the prolonged symptoms of right side weakness and loss of coordination, nervous system shenanigans, and crazy eye-stuff.  Plus making time for injections each night (I won't hide my excitement that it sometimes gets me out of bedtime duty).

I know I am not the only person - and far from it - who feels like this.  I know Moms feels like this, and some Dads too, but seriously - I feel like there's been some crap chucked this way that I could really do without.

And my dentist wonders why I grind my teeth. 

Phew - rant over...

So my question to you is this:  How can I get better in control of my life.  How does one make time to breathe?

MS prevalence

This is the data collected by the Multiple Sclerosis International Federation.  This graphic shows the worldwide prevalence of MS. 

Notice Canada. 

And notice the higher prevalence in northern European countries.

Typically, and historically (although immigration is now confusing this theory), MS affects those from northern latitudes, and those with genetic connections in certain northern climates.  The theory behind this is the correlation between MS and vitamin D (the sunshine vitamin) deficiency.  Although only a pin prick in the maze of what actually causes MS, this map shows the importance of considering vitamin D and sunlight exposure...

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And, just to pack in a laugh... thank you to Jack's friend who has lent us this...

We are now a remote-control-fart household.  The fun; the fun.