Saturday, 29 October 2016

A goodbye

You can shed tears that she is gone,
or you can smile because she has lived.

You can close your eyes and pray that she will come back,
or you can open your eyes and see all that she has left.

Your heart can be empty because you can't see her, 
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday, 
or you can be happy for tomorrow because of yesterday.

You can remember her and only that she is gone, 
or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back, 
or you can do what she'd want: smile, open your eyes, love and go on.

 - David Harkins

---

I never imagined I'd be writing this post. About losing my Mom. About the fast descent into illness that took her life far too soon.

I was a part of her; and she of me. And my heart will forever be missing a piece.

A week ago, my Mom left this earth. And with her, the image of the rest of my life.

This will be a profound change. And one that cannot easily be put into words.

But despite the many tears we have now, I know she will always be with us.

We can still cherish her, love her, and go on.


 


Sunday, 21 August 2016

Four years

I wrote these words four years ago...


I saw the lesions on the MRI before the doctor could start pointing them out, and I knew exactly what it meant.  MS.  Multiple Sclerosis.  

Life is surreal sometimes.  For just a moment - just that one moment - you are allowed to leave your body, try and take it all in - take a deep breath - and then return.

When you see your brain, amplified by light and imaged into sections, you turn sort of numb.  "It's not really my brain," you think.  But alas, it is.  And there they are - those little bean-shaped lesions.  Waiting to kick into full-MS-mode.

So now, the journey begins.  And I have no choice but to fight it.




Sitting there that day, alone in the doctor's office, I never could have imagined what MS would teach me. But my, has it taught me so much.  I can listen to my body, understand what it needs me to do.  I understand that I can be strong, that I am a fighter.  That this will not define me.  I have learned to care more about humanity and understand humility. I better accept mortality and the fragility of life.

I understand the importance of surrounding yourself with those who make you happy, who lift you up, who support you and care for you.

Four years in, and yes, it still terrifies me.  There are still days when I wonder how the universe decided to throw this at me.  But I am also so proud of the outreach and volunteer work I have done, my efforts into fundraising and awareness.  I am so happy I became part of the amazing MS community that is out there.

I mark this day, my MS-iversary, every year, not for pity or sorrow.  But as a pat-on-the-back to myself.  A reminder, especially when life gets hard, that I can do this.  I can live life.  I can overcome obstacles.  And I will be okay.






Friday, 24 June 2016

MRI update

I had a visit with my Neurologist and got the results of my yearly MRI.

And for the first time in years, my MS is not stable.

There is a new hyperintense lesion in my right frontal lobe.

Yes, I've had relapses and reactivation of old symptoms, and do have daily symptoms of living with MS.  But this is the first time there has been a change in my imaging.  (It takes a lot for some disease activity to show up on the 1.5 Tesla MRI machine.  For example - each and every relapse I've had since diagnosis hasn't changed my imaging.  Not even when I lost my vision).

The quick neurological exam was pretty much the same.  I still have residual decreased vision from the optic neuritis in my right eye four years ago, with mild red colour desaturation, and mild optic nerve atrophy in both eyes.  I have difficulty performing the tandem walking test and display abnormal reflexes.  My EDSS (Expanded Disability Status Scale) is up a bit, but I'm not going to share the number.

Despite my Neurologist's best promises of the fact that I still have a "good looking brain," meaning, this could be a lot, lot worse (and I am well aware of that), it's hard not to take this news positively.

Unfortunately, that's the nature of the MS-beast.

But, we move forward.  We must.

And I will.

The plan, for somewhere along the road, when life is a little simpler (hmmm...) is immunotherapy. The thought of that still scares me, but at least I have my extended health approval for one medication and the option of a few clinical trials coming up in the next while, just in case I can ever make a decision.  Ha.

Meanwhile, I am still so, so thankful for my health care team, the research happening every day, and this place, where I go to receive all my care.


Monday, 16 May 2016

Thank you!

To everyone who supports the MS Walk each year- thank you!

And to the MS Society - keep on doing what you're doing.  You give me a lot of hope for my future.

Huge thanks from team Making Lemonade!


Saturday, 14 May 2016

Fundraising items - the winners!

It's raffle time!

Thank you to everyone who donated to the MS Walk this year.  Team Making Lemonade has raised almost $4000 this year, bringing our 4 year total to almost $24,000!

All the names of people who made any donation, to any team member, went into a big bowl, and I randomly picked the winners.  We have 6 prizes this year, so 6 winners there are!

(I wish I had a prize for each of you, I really do, but I gotta make this fair...!)

So here we go...


The winner of Dominique Fricot's album If Baby Could Walk is the McDonah Family!

The winner of Dominique Fricot's album Sweet Little Fantasy is Laurie B.!

The winner of Dominique Fricot's Haunted by Love t-shirt is Myrna!

The winners of Ryz RĂ©mi's luxury skin care package are Kyle and Maria!

The winners of the family photo session with Penelope Slack Photography are Callum and Zoey!

The winner of the Aria Industries earrings is Amy Bateman!




Congratulations everyone!  I will be contacting you within the next few days to get your details.

And thank you to the generous, talented people who donated these wonderful items.  You've helped raise a lot of money for an important cause.  I'm very thankful.

Until tomorrow - It's almost go time!

Thursday, 14 April 2016

Fundraising item - the earrings!

A welcome back (and huge thank you!) to the talented Aileen Lau of Aria Industries for creating and donating yet another stunning pair of earrings.




These intricate, custom-made beauties, created with coral and sterling silver, were again this year designed using the MS awareness colour of red.  They have been named Laia after the actress from Sebastian Schipper's one-take movie called Victoria, which played at the Vancouver International film festival in 2015.

Check out the beautiful work of Aria Industries here.

Thank you, Aileen, for your support again this year, and for your beautiful, unique pieces that can help bring awareness to MS!

All donations to team Making Lemonade are entered into the draw for lots of great prizes.  If you'd like to win these earrings, donate here!

Tuesday, 12 April 2016

Fundraising item - the music!

Back again this year, musician Dominique Fricot is supporting team Making Lemonade in the MS Walk!

I've got two signed albums and an awesome t-shirt to give away!



For those of you who don't know Dom, you are missing out.  His music, lyrics, and presence are intoxicating.  They make you sit still, stop talking.  You focus on every ounce of energy he puts out. And he draws you in.

He possesses some of the purest talent I've ever seen.

Here's one of his best known songs and a personal favourite:



Take some time to check him out here.

Thank you, Dom -  Your generosity and continued support mean so much!



Every donation to team Making Lemonade gets an entry to win these incredible prizes.

Donate here!