2016 MS Walk

As usual, my fundraising starts early.  Really early!

That's because this event motivates me.

Gives me so much hope for the future.

The Vancouver walk will be held at the Plaza of Nations on Sunday, May 15, 2016.  And Team Making Lemonade will be there for our 4th year!

If anyone would like to join the team - all are welcome!  And I would love to see lots of people there!

To join the team or donate, click here.

Anything and everything is so appreciated.

And thanks to the early-bird donors - you guys are amazing!

Together, we can end MS.

Kindergarten

Today my littlest started school.

My constant companion over the past years, my buddy, my go-to coffee date.

My lovable son.

It's a very bittersweet feeling.  Sending him out into the great big world.  Letting someone else be with him all day long.  Wondering what he's up to.  Hoping he's okay.

I think those thoughts are always stronger with the baby of the family.

But - I am so excited for him.  He can grow and flourish, and begin something new.

And he gets to do what his brother has been doing for years now - and that's pretty enthralling for a 4.5 year old!

Yes, I admit - I am also excited for a little more quiet time.

(And to end my career as a short-order cook for a very demanding customer... ha!)

I'll miss you, O.  But have fun, little man - the world is ready for you!

MS-iversary

Three years go so fast.

Yet oh so slow.

There's been a lot to process, a lot to acclimatize to, a lot of deep breathing and trying not to cry.

But there's also been a lot of hope, a lot of promise, and still - a lot of support.

To everyone who helps me fundraise, gets involved, spreads the word, makes me laugh or listens to me rant - thank you.  You are part of the reason I feel accepting of my MS.

Getting diagnosed with a chronic, life-long disease is never an enjoyable experience.  Never something you revel in along the way.  But, for me, it has been the most forceful catalyst to understanding who I am.  Knowing that self right in the middle of my being.

I don't know why I mark this day.  Why I remember.

Maybe I need to let go of some loose emotion.

Maybe I need to do something special for myself.

Maybe I just need to pat myself on the back and say, You got this.

Crusin' to End MS

Each year, the MS Society of Canada partners with A&W to raise money to support people living with MS.  To provide funds to assist with research, equipment, support groups.

That list goes on.

This partnership has raised more than $6 million dollars.

Money that I have seen directly help me.  And money that has impacted anyone living with MS in Canada.  Anyone who is involved with the MS Society of Canada.

These fun, interactive events are a great way to spread awareness.  They get people talking. And the word spreads fast.

Other great examples are Dairy Queen's support of Children's Miracle Network Hospitals on Miracle Treat Day and London Drugs' sponsorship of Pink Shirt Day.

Each year I embrace this amazing sense of community.  I eat my Teen Burger with gusto.  And heck - I usually throw in another donation too.

Because this is how fundraising moves forward.

We support.  We help raise money.

On Thursday, August 27th, $1 from every Teen Burger sold at A&W will go directly to the MS Society of Canada.  But, if that's not your thing, you can still donate at any location or online.  And join the fun - many locations have classic car shows, games, raffles, and entertainment.

It's great fun and a great cause!

Summertime boys

That right there, my friends, is the look of pure joy.

It's hard to ignore that kind of energy.

It becomes a mesmerizing life force of its own - sucking you in for more.

And it's even more poignant for me, this summer, as we returned to the family summer house.  The house where my Nanny spent her time, cherishing each moment with her family.  Taking us under her wing each and every summer.  Teaching us the importance of love, life, and genuine friendship.

She passed away a few months ago, but we finally got to bring her ashes home.  That brings me a lot of peace.

And I can feel her spirit continuing. 

Through anyone who sits and enjoys the view.  Or dangles their toes into the water, even for a moment.

Watching these two makes me genuinely believe this.  I can see it in them.

Life does carry on.  In many ways.

I'm melting...

Or in medical terms, Uhthoff's Phenomena (heat intolerance).

Many people with MS experience a drastic sensitivity to increased body temperature.

Demyelinated tissues in the central nervous system can be very sensitive to even small increases in core body temperature, which results in nerve conduction delays or even conduction block.

This sensitivity can be exasperated by exercise, hot baths, emotion, fatigue, fever, or for me - Summer.  Ugh.

Any MS symptom can appear because of this, with the most common being blurring of vision after activity and overall physical weakness.

Avoidance is the best defense (yeah - tell that to my kids).

For now, I'll use my cooling neck tie (so ugly, but really helps), take lots of cold showers, and make room in the freezer for my entire self...

Only two months to go...

On Motherhood, at year-end

Sometimes I yell.  Sometimes my shoulders are tight with stress. 

Sometimes I have to take a deep breath and count to three.

I am mostly exhausted. 

And sometimes cranky.

And I never get enough sleep.

But you know what?  It's worth it.  Every moment, however tedious, tiring or repetitive they sometimes can be.

Because these tiny creatures are truly awesome.

And there are days, like today, where you stop just that little bit longer to look at your child's face.  To try and understand them just that little bit more. 

To see them as real people.  Important people.  People growing up in what seems like an instant.

Being proud of my boys is an understatement, for sure.  They have both accomplished so much this school year, have pushed past obstacles and uncertainties, and have come out on top.

I couldn't be a prouder, more sentimental Mom as I am right at this second.

(maybe that's the lack of sleep from a 4am kid nosebleed or the 6 Timbits I just scarfed).

Onwards and upwards for these two guys!



Preschool Graduation



Last day of Grade 2

MS fast fact - dysaesthesia

Or for me, the creepy crawlies.

Dysaesthesia, which means an abnormal sensation, can occur in any area of the body, depending on where central nervous system damage has occurred.  And comes in many forms - pins and needles, tingling, numbness, burning, wetness, crawling, itching, electric shock.  Not to be confused with loss of sensation, or reduced bodily sensation.  These are all common in MS.

Other than tingling and numbness, which are my biggies, the skin-crawling sensation is a common one for me.  It's not permanent, but it always affects me in the same area.

It starts on the tip of my nose and spreads across the left side of my face.  It feels like thousands of bugs are crawling across my skin.

Shudder.

Then it just stops.

And reappears whenever it pleases.

It's a good time to practice my nursery rhymes, I guess...

More favourites

A few more pictures from the MS Walk.

 

Photos from the MS Society, Lelainia Lloyd, and Penelope Slack.

World MS Day

On World MS Day, we take the time to think about Multiple Sclerosis. 

What we know, what we don't know. 

What could be discovered in our lifetimes.

Who has it?  And why?

But we also take the time to thank the people who make living with MS better.  I want to thank my amazing group of family and friends, who support me not only on this day, but every day.  I want to thank the MS Society of Canada (British Columbia), who have provided me with resources, support, and education.  I want to thank my healthcare team, who have answered calls after hours, pushed for urgent appointments, and always make me a priority.

Thank you all.

 

 

Together, we truly are stronger than MS.

So today, on World MS Day, if you know someone with MS, give them a call, send them an email, grab then and give them a giant hug. Ask them how they are doing and tell them you support them.

If you'd like more information about Multiple Sclerosis, check out World MS Day or the MS Society of Canada.

2015 MS Walk

Wow.

I really don't know what else to say.

Every year I am amazed by the support I receive.  In all forms.  People join the team, people donate, people support me in whatever way they can.

And it all means so much. 

And I have a tendency to get emotional.  But it's amplified so much on days like today.

Our team, Making Lemonade, raised almost $5000 this year, bringing our 3 year total to $19,000!  That all goes directly to the MS Society for the research, services, and support they provide.

That number astounds me.  Makes me so proud.  And none of this could have been done without you.

Thank you so much!

 

 

Radio show!

It's been a very MS-oriented week.  And a very busy one, at that.

I've been preparing for the MS Walk this Sunday - dusting off my tacky yellow (Team Making Lemonade will definitely be in the house!), writing my speech for the pre-walk events.

(Big thanks to my 4-year-old for listening to me practice.  I can tell he just loves it.)

I've been muddling my way through some serious MS "brain fog," which is never fun.  It's this odd haze-like existence - as if your brain can't piece two thoughts together.

Today, Tania Vrionis, President of the BC and Yukon Division of the MS Society, and I sat down with Simi Sara on her CKNW radio show to discuss living with MS.

Here's the SoundCloud link if you missed it:

https://soundcloud.com/cknw/living-with-multiple-sclerosis

And if you'd like to donate to this very worthy cause, click here!  Only two days left.

I think I can speak for everyone involved by saying we are SO EXCITED for the MS Walk events this weekend.  And thank you to everyone who has helped, donated, or spread the word.

Special guest!

Team Making Lemonade has a very special guest joining us for the MS walk! 

And I want to shout it from the rafters, I'm so excited!

The one and only Dominique Fricot, musician-extraordinaire, will be walking with us!

I have sung his praises before, but will do it again now.  Dominique Fricot is a musician worth listening to.  Worth supporting.  He has that unique, raw talent that doesn't appear often.  He has an unequivocal ability to perform, oozes undeniable charisma, and writes lyrics that hit you right in the heart.

Check out his website here. 

I cannot express how grateful I am to Dominique.  Not only did he donate 3 items to use for my fundraising, but he's made me Christmas cookies, successfully disguised my singing voice while caroling, and now is walking 5 km with my crazy self.

I am still in awe of the support I find in all sorts of places.

Start thinking about your yellow outfit, Dom!

And for all you generous souls out there - you can donate here.  Thank you!

Raffle results!

There are some lucky, lucky people who have donated to the 2015 MS Walk!

Thank you to everyone who has contributed so far - I have raised $1610 and my team has raised $3300!

And we're not done yet!  The raffle may be over, but the walk isn't until May 24th.  Plenty of time to raise more money and awareness for this important cause.

So, without further ado, the winners (with names listed as they publically appear on the walk site), as drawn by me, are:

Finn and Dylan - you've won a signed copy of The Last Hiccup by Christopher Meades!

Anonymous #3 (I kept track of the anonymous donations, don't worry) - you've won a signed copy of If Baby Could Walk by Dominique Fricot!

Penny Slack - you've won a signed copy of Sweet Little Fantasy by Dominique Fricot!

Patricia MacInnes - you've won the custom earrings by Aria Industries!

Pam and Eli - you've won the Haunted by Love t-shirt from Dominique Fricot!

I will be contacting you all to get delivery details.

Congratulations everyone!

And thank you to the generous, talented artists who donated these amazing items.  You've helped me raise money for a cause so, so close to my heart.  I am forever thankful.

Guess what?

No new lesions!

On my brain OR spinal cord!

I saw my Neurologist today to go over my latest MRI and have a check up and medication chat.

Although I am considered "stable diseased" in radiological terms, and still have dozens of brain lesions and one large spinal cord lesion to contend with - there are no new ones!

These injections are in fact helping me. 

That makes me much less resentful of my nightly shot-routine.

I am also now stable enough on Copaxone (2 years now) to try reducing my injections.  This isn't something that is prescribed per se, but since I am having some lipoatrophy in certain injection locations, my doctor was comfortable allowing me to do this.  I can do the injections 3 times a week now - in hopes it will help my skin (ahem... vanity).  Needless to say - I am thrilled!  Maybe I can reduce some of the damage these injections have done.

The icing on today's cake - I've been asked to speak at the Vancouver MS Walk! (Only for a couple minutes, but still...)

It's been a good day.  A very good day.

The swag!

I am itching to give these goodies away!

Remember - I have FIVE items - and anyone who makes ANY donation to the MS Walk will be automatically entered into the raffle.

Click here to make a donation!

Fundraising item - the bling

Who doesn't love jewelry?

And who wouldn't love to own - and wear - something custom designed and hand crafted especially for them?

Seriously, look at these!

These beautiful earrings, named Berenice after the actress who portrayed the femme fatale Sévérine in Skyfall, are as red as red can get.  A bold, dramatic colour, yet also appropriately the colour of MS awareness in Canada.  Made from sterling silver, the teardrop shaped stones are brilliant red rubies and the tiny faceted stones above are red spinels.

The artist-extraordinaire behind these earrings is Aileen Lau, who created Aria Industries to showcase her incredible talent working with silver and gemstones.

Check out Aileen's beautiful blog here and her very tempting Etsy shop here.

I was so touched when Aileen reached out to me, offering to donate a piece of her jewelry.  We've known each other since elementary school, but have partially lost touch over the years.  People move, things change, life gets busy.  Thanks to these earrings, we get to renew our friendship and raise some money at the same time!

Thank you so much Aileen, for reaching out to me and for donating these stunning earrings. 

To win them - and I know you want to - make a donation to my MS Walk page here.

Fundraising items - the music

It was years ago I heard him sing for the first time.

Up on a stage, alone, just him and his guitar.  No amps, no background, no dizzying distractions.

And it was amazing.  Amazing.

The crowd was silent - taking in every ounce of musical genius Dominique Fricot had to offer.

And let me tell you, he pours his soul - his entire being - into his performance.

I've been mesmerized since.

(And even had the opportunity to join Dominique on a skytrain Christmas caroling adventure.  Non-intoxicated, I promise).

So I asked Dom if he'd like to get involved with the Vancouver MS Walk.  Being an all-around awesome guy, he said yes, and I couldn't be more excited!

I have THREE items to offer from Dominique Fricot - two signed CDs (which are both so fantastic) and an incredible t-shirt (which I not-so-secretly want to keep for myself).

Check out his website here and send him some love.  And get tickets to his upcoming video release show!

Huge thanks for donating, Dominique!

You really can't pass this one up, people!  Donate to the MS Walk here to enter the draw!



 

Stay tuned for another announcement about Dominique Fricot and the MS Walk soon!

Fundraising item - the literature

You know those books... the ones that don't end up in your to donate pile.  But permanently live on your bedside shelf?

For me, The Last Hiccup is one of those books.

It's wickedly funny, dark, quirky.

I am in awe of Christopher Meades' ability to create entertaining fiction, complete with exquisite prose and detailed, interesting characters.

This man knows how to write a sentence.  A book.  Many books.

And very deservedly, The Last Hiccup won the 2013 Canadian Authors Association Award for Fiction.

Here are the judges' comments:

The Last Hiccup is an episodic novel reminiscent of Chaucer’s Tales or the Decameron. At the heart of the story is a hiccup, or more specifically, a boy with the hiccups… This surrealistic novel takes us through the misadventures of Vladimir and along the way the reader gets a good look at society’s foibles. The writing is exquisite, the language poetic and fresh. Although the story takes place in 1930s Russia, it feels very relevant to our times.

----

Thank you, Chris, for donating your book to help raise funds for MS research and treatment.  Not only are you an amazing author, but you're a true friend and a great source of support.

Check out Chris' website here.

Enter the draw by donating to the MS Walk here and you could win a signed copy of The Last Hiccup by Christopher Meades!

Fundraising raffle!

The time has come, folks! 

I've got 5 wonderful items up for raffle.  All to help get my fundraising blazing in the last month before the walk. 

And all items have been donated by incredibly talented Canadian artists.  Hint - not art in the traditional sense... but some music, some fiction, and something beautiful to wear...

The items will be introduced each day, starting tomorrow.

Every donation to my walk page gets an entry into the raffle.  I'll keep track of the donations and number them in order.  On Saturday, May 2, I'll have a draw to reveal the winners!  And I'll personally deliver or mail the items to you.

It's win-win, right?

So, if you are tempted to win something really awesome, or just want to support MS research, click here to donate!

Oh, and one more not-so-subtle hint...

MRI and diagnostics

I would never have received my diagnosis without Magnetic Resonance Imaging.

And it took years of strange symptoms to have it done.

MRI is a modern medical tool - invented only in 1971, with the first human scan not performed until 1977.

Today, MRI is the most definitive method used for MS diagnosis.  There are no blood tests and no uniform set of symptoms.  Neurological abnormalities are often not present on physical examination.

The Evoked Potential test can aid in diagnostics by recording and mapping how electrical signals travel throughout the body.  And a spinal tap can help by identifying abnormalities in white blood cells or antibodies that are associated with MS.  Despite their usefulness, however, these two tests can have drawbacks.  The results they display can be indicative of many diseases (and not just MS) and false positives and negatives can occur.

I am very grateful to have regular access to an MRI machine.  I'd probably still be rotating through Neurologists who thought I was "just stressed" otherwise.

----

I went for another MRI today - brain and spine.  Ninety minutes enveloped in a giant clanging beige tunnel, head and neck cages on, Hannibal-Lecter-style.  With no swallowing for the neck portion (which psychologically makes me swallow... ugh!).

I always put their headphones on over my ear plugs, in hopes that between the rattles and thuds of the machine I'll be able to hear some music.

The only lyric I could pick out today:

"Back to life, back to reality..."

Thank you, Soul II Soul - your ironically fitting late 80's song took me waaay back and added a few giggles to my day.

WAMS BC Launch

This week WAMS (Women Against MS) was successfully launched in B.C.

It was a networking event held at the Centre for Drug Research & Development at UBC, and was attended by a wide mix of people - the MS Society, people living with MS, MS researchers and specialists, CDRD staff and directors, politicians, and community members.

The one thing bringing us all together - the strong need to increase and support MS research.

Canada has the highest rate of MS in the world, and 75% of those people are women.

Thank you to all the dynamic speakers, Karimah Es Sabar, President and CEO, Centre for Drug Research & Development, Jody Wilson-Raybould, Liberal candidate for Vancouver Granville, Dr. Cornelia Laule, WAMS grant recipient and UBC researcher, and Jennifer Sweeney, MS Advocate and MS Society group facilitator.

I was there in my role as MS Society Ambassador to get updates from MS researchers, to spread the mandate of the MS Society, to encourage people to participate in fundraising events, and to speak on behalf of the 100,000 Canadians living with Multiple Sclerosis. 

I hope to see many of the people I spoke with come out for the MS Walk in Vancouver on May 24th!

If anyone would like further information about WAMS, or would like to get involved (there will be many upcoming networking events and a gala luncheon in November), visit www.wamsbc.ca

In all - A very worthwhile evening promoting a very important cause.

The E word

Exercise.

I always say my kids are my cardio.  And for the most part, that's true.

I was lucky to be gifted with skinny genes and a high metabolism.  But as my age increases and my abilities and energy become affected by MS, staying fit becomes much harder.

I decided to up my (non-kid) cardio.

But no swimming.  I hate swimming.

(and no Zumba, or anything different, as I'd break an ankle again).

I sucked up any apprehension I had, dug out my old workout clothes, took a deep breath, and just did it.

(Luckily I am still somewhat workout-fashionable.  Cause that's important too).

I knew I had to take it easy.  Not just because I'm not in fantastic shape, but because my head can go from ok to drop-to-the-floor-dizzy in seconds. 

I did the bikes and the treadmill (inclined, fast walking only).

I noticed my balance was incredibly off on the treadmill.  I had to hold the supports the entire time, and if I let go even for a moment, I couldn't move forward in a straight line.  I took lots of time to ensure I stayed cool and drank lots of water, so it wasn't from common MS triggers like overheating or dehydration.  It was simply my brain's reaction to being jostled around.

How things have changed.

Now I know I need to stick to machines I can sit on or hold onto. 

Or get buckled into.  Ha.

To bad couch-potatoing doesn't burn calories.

Despite that, I enjoyed it.  I felt "normal" and healthy.  Well - by the end of it, mostly just dizzy.

Here's to next time!

Reeling in the expectations

I have a very guilt-filled relationship with my MS.

Mostly to do with my kids.

Life was always go-go-go for me.  Career, kids, balancing the two.  Add in the incredible MS fatigue, and it's so hard to stay above water.

We've talked about fatigue before, but I'll mention it again now.  It is one of the most common symptoms associated with all forms and stages of MS.  And can be severely debilitating.

It's hard to accept that.

Being so stubborn, I attempt to continue on with life - determined to make everything just like before. 

As if my life is now defined into two stages - before MS and after.

I struggle to keep up with my former self.  Activities, trips with the kids, producing the energy parenthood requires.

And after the start of a very busy spring break with my energy-filled kids, it catches up.  And I feel horrible.  Sick and tingly.  Foggy.

I know the process well.  It's been happening for at least a year now.  But I just don't catch on.  Perhaps I'm clinging to the hope that maybe, just maybe, today it'll be different? 

I probably haven't fully mourned the old me yet.  The woman who was healthy and had only positive life plans. 

And letting go of that order and control.

I can't change what I have been dealt.  And I do my best to be accepting and gentle with myself.

But man, adaptation is hard.  Even years in process.

Today's going to be a restful, quiet day.  And I am grateful.

Going for broke...

With the persistent walk-talk...

I've been taking a break from blogging for a while now.  For a few personal reasons, none of which need to be mentioned here.

But I want to keep the MS Walk fundraising momentum going.  This is my third year participating, and my third year of living with MS.  This cause means more to me than ever.  I can see potential treatments and discoveries this close to becoming reality.  On the cusp of changing my future, maybe?

My MS hasn't gone away, and it's not going to.  That's why this year should be just as successful as our previous efforts. 

If you haven't joined or donated yet - click here!

A huge thank you to those who have donated, joined the team, or supported me so far!

   

The necessity of comfort

I have a permanently numb foot, toes that sometimes hurt, and a new foot cramp that stops me in my tracks.

I have poor balance, and regularly stumble around.

I have weakness and decreased sensation in my legs.

I have MS, yes, we all know that.  But I am also a typical mid-30-something Mom of two boys who just won't stop moving.  Ever.

The above combination was proving too much for my poor feet and legs.  So I searched high and low for comfortable shoes in my size (what's up with size 7?  There are never any left...)

I sucked it up and paid for shipping, and they arrived today. 

And let me just say - Skechers, your Memory Foam has saved my life.  Even if just for now.

I am floating away in these shoes!

(and no, I don't plan to "run" in them or anything...)

Fundraising

Christmas is done.  We rang in the New Year.  Time to focus on fundraising for the MS Walk. 

Here are 5 excellent reasons to donate or join my team:


1.  Canada has the highest rate of MS in the world.

2.  Over 100,000 Canadians live with this disease.

3.  The MS Society of Canada does A LOT to help people with MS.  In 2013, they funded $8 million in Canadian MS research, $9 million in programs and services for people affected by MS, $6 million in public education and awareness, $2 million in government and community relations and $4 million in volunteer and chapter development.

4.  There is no cure for MS.

5.  Your support will have a direct impact on my life, and I'll be forever thankful.

Click here to see my fundraising page.

Team Making Lemonade starting the 2014 walk.

Saying goodbye

This week we said goodbye to our beloved Nanny after her long battle with Alzheimer's disease.

This was a day we knew was coming.  She was 90, and had been in the late stage of the disease for years.

Despite that, I am so sad. 

But I also want to capture a few memories of her, right now, in the middle of all this...

---

She loved to cook.  And hosted a mean dinner party. 

Her pickled onions were legendary.

She always wore the fanciest high heels. 

And had the best lipstick (and would literally stop traffic to re-apply it - which makes me smile).

She loved the musical Cats and the Nutcracker ballet.

When I was sick as a kid, she'd drive all over the city to bring me fresh Matzo ball soup.

She let us jump on the beds and her fancy furniture (don't tell Jack!).

She spoiled us rotten.

She could play anything on the piano.

She loved ice-cream.

Even when she was fighting early Alzheimer's, she still stood up and gave a speech at my wedding.

When she lost her ability to speak, and could no longer recognize us, she'd still smile and wink.

Meeting Jack for the first time, 2007.

As our very involved Grandmother, she also became a friend, confidant, and mentor.

She loved her family like nothing else.  Her incredible dedication to us all was amazing.   I am truly grateful to have had her in my life.

We love and miss you, Nanny.