Remembering

It's been 12 years since the loss of one of the most important people in my life.

Today marks the anniversary of his passing.

Of course there are still tears, still huge outpourings of memories.  But, the years are easier, and this day is easier.  Life does go on.

Each year I try to do something to remember him.  Sometimes I go to the tree planted for him, and simply sit and remember.  One year, my sister Erin and I went out an enjoyed a nice glass of his favourite red wine in his honour.  Sometimes I wear his old lapel pin.

Today is about some of Robin's favourite things.  In his honour - I will blast Jeff Buckley as loud as I can, I will eat a huge Oh Henry bar, and yes, I will enjoy some wine.  Most of all, though - I will smile through some happy tears, and be so grateful I had him in my life.

The reflections Erin and I wrote for his memorial are perhaps more poignant all these years later:

"...and the things we miss now are closer than we think.  They are inside of us.  And when we do something kind, laugh at a corny line, read a good book, or open a bottle of red wine - we are continuing him."

We love you, Robin,  And still think about you every day.

World MS Day

World MS Day is on May 28th.

The Multiple Sclerosis International Federation, based in London, which documents, supports, and brings awareness to MS world wide, has chosen me to be part of their "One day" campaign to promote MS initiatives.

All of the MS ambassadors (which seems to be the coined term) had to choose our one wish for our lives with MS, plus discuss this year's theme of "access," and how it affects our lives personally.

It will be very interesting to see the global differences in terms of access to healthcare, medication, and treatment.  I am very, very aware of how lucky I am to live in Canada.

The "One day" pre-launch website has gone live, and if you wait for all 21 people to be featured, you can see my "One day" wish.  On May 28th, the full site will be unveiled and all the MS ambassadors from around the world will be featured with their wishes, plus issues surrounding MS and access.

Click here to see the World MS Day website.

It is such an honour to be included as a "MS One Day" representative from Canada!

 

 

MRI update

I finally received a copy of my brain MRI from the Radiology department.  Here's their (a little too concise) summary:

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Type:  MRI Brain

Indication:  Relapsing Remitting MS on Copaxone.  Still having relapses.

Comparison:  May 2013

Findings:  Several juxtacortical, deep white matter, and periventricular hyperintensities (lesions) are noted consistent with known diagnosis of multiple sclerosis.  No infratentorial disease identified.  No new lesions seen.  Brain volume is normal for age.

Impression:  Stable diseased.

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That's me - stable diseased.

I am happy there are no new brain lesions.

But this was expected.  My brain MRIs have always been stable, whereas changes in imaging and increases in symptoms are from my large spinal cord lesion.

It is odd that I never have both brain and spinal cord imaging done at the same time, to assess physical symptoms and medication effectiveness concurrently.  I suppose it is the schedule I stumbled upon during the diagnostic process, and now it's just stuck.

And as the boys and I returned from school, plus a long, sweaty playground visit, my Neurologist called.  (I hope he didn't hear the rowdy screams in the background...).  Even though there was nothing of note to mention from this MRI, I was impressed to receive a live call from him.  No assistant staff, no residents, no leaving message after message for a nurse.  He wanted to go over my MRI and see how I was doing. 

It's nice to feel like a human patient.

My appointment with him is in 10 days, so then we chat about a medication switch - and whether that possibility still exists.

MS Moms

Before an MS diagnosis, many women just assume the exhaustion, brain fog, and clumsiness is just part of being a Mom.  Mommy-brain.

It goes on for years. 

Then starts to include other symptoms.

And usually gets bad enough that a diagnosis is made.

I find it so ironic that the scars of Motherhood overlap so greatly with those of MS.  Yet, with added irony - one of the largest groups of people with MS are young Mothers.  They are the "typical" person with MS.

And I think it's harder for Moms to focus on their own health.  Their own well-being, and daily happiness.  Simply put - it's not easy to overlook those small faces of yours; to not put them first.  I think all Moms struggle with this, living with a disease or not.

On this Mother's day weekend, I am going to appreciate all the Moms I know.  With MS.  Without.  Those with a smile on their face, and those fighting a battle they didn't ever think they could conquer.

If you are on Twitter, let's get some action for #MSMoms.

And check around your neighbourhood to support the MS Society's Carnation Campaign.  I love that it happens on Mother's Day weekend.

Elusive sleep

MRI day has arrived. 

I have to be up in about 5 hours.  And of course, cannot sleep.  I've tried all of my tricks - prescription and otherwise.

You know that feeling where your brain just won't shut off?  That gets amplified and everything becomes an issue. 

My pillow feels funny - Did someone move my perfect pillow?  It feels "wrong."  I'm hungry.  And it's way too hot in here.

This is probably the process that has become the most unfamiliar to me.  I still get so anxious.  Brain and spinal cord MRIs so often I've lost count.  Maybe 6 in the past year and a half?  Getting fried (figuratively, of course) for an hour so early in the morning is just so wrong.

Digression aside, fingers crossed for no changes in my brain, and most importantly - some sleep!

(or maybe a nap tomorrow.... anyone want to take my kid?)

 

 

 

Walk day!

Today was the most perfect day for the Vancouver MS Walk.

And over $125,000 was raised for the MS Society.  That is amazing!

Team Making Lemonade was first out of the gate for our 3km walk around beautiful Stanley Park:

A giant thank you to everyone who joined us in the sun today.  It was wonderful to see so many happy, supportive faces.  Your presence (and tacky yellow) means so much to me.

And to everyone who donated to Team Making Lemonade - we couldn't have done this without you.  Together, we raised $5000 for the MS Society.  Thank you!

Finally, thank you to the MS Society for asking me to come on board as an MS Ambassador for the BC and Yukon Division.  What a dream for me.

I truly am humbled by everything that happened today.  Thank you everyone.

One week to go!

Who knew I had such skills as a broken record...

The MS Walk is in one week, and I haven't stopped my fundraising efforts yet.

Let me tell you why this is so important to me. 

Helping the MS Society raise money gives me hope for my future.  It helps me feel more at ease with what is happening to my body every day (even when I can't feel my leg or arm, or my brain gets muddled, or I can't see properly, or I lose my balance and fall).  It helps me worry less about medication costs (about $50,000 a year).  And it helps me tame my how-much-worse-is-this-going-to-get thoughts.

It makes me hopeful that this disease will one day have a cure.

And I do feel hopeful.  Very much so.

Events like this walk help create that feeling.  Being surrounded by people who love and support you, even if you don't see them every day, means more than anything in this world.

One week until Making Lemonade breaks out all that yellow stuff...

If you'd like to make a donation, click here.

Thank you for your support!