Sunday, 13 April 2014

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.





Sunday, 6 April 2014

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!


Monday, 24 March 2014

Lipoatrophy

The dreaded skin condition highly associated with Copaxone injections, that some people will develop.  Looks like I am one of the lucky.

Lipoatrophy is the term describing the permanent localized loss of fat tissue. It occurs as a result of subcutaneous injections, and with Copaxone can include a skin colour change (I don't even know how to describe it.... sort of gray-ish), as well as denting of the skin at the injection sites.  Kind of like cellulite, but not.  So odd.

I am religious about rotating my injection sites, but doing this every day means the skin does get damaged with time.

The last time I saw my Neurologist, he wanted me to switch to a stronger oral medication called Gilenya.  With the continuous nature of my disease activity, he thought this was the best course.  But the increased monitoring, plus potentially very dangerous side effects, had me pleading for 6 more months of Copaxone injections.

I am thinking perhaps it is now time to re-evaluate the switch to something stronger, and without daily injections.  The little vanity I have left is not enjoying dented skin.  My next MRI (just brain, not spinal cord) is in April, then early May to see the Neurologist.

Until then - the Copaxone stays, and I get creative with new injection sites.

Friday, 21 March 2014

They made lemonade too!

Literally.

My boys, along with my Mom and Sister, had a lemonade stand today. 



They drove up to a busy intersection by my Mom's house, near lots of shopping, and did their thing.  They went through 4 pitchers - and sold out- of lemonade!

They said they wanted to donate their profits to our MS walk team (after allocating for toys, of course).  As if I need more I'm-so-proud-of-these-guys tears.  They did this to help support me.  And they are only 6 and 3.

Apparently Jack is quite the salesman... "Fresh lemonade, get your fresh lemonade, only 10 cents a glass!" (They should have charged more, I think).  "Not too cold, but just right!"



That's what I call "Making Lemonade" at it's finest!

Thursday, 20 March 2014

Great Wolf Lodge

We needed a vacation.

As much as I would have liked, not the sitting-on-a-beach-with-an-umbrella-drink kind.

This had to be something for the boys.  They needed to go crazy, release some energy, and just have lots of fun.  Pretty simple.

I find I prioritize their fun more now.  The importance of it, and the increased opportunity for it.

So we packed up (with lots of junky bribes and electronic gadgets) for the 5 hours of border waits, snack stops, and driving, to get to Great Wolf Lodge in Washington State.  It's about an hour south of Seattle.

The place is a giant indoor kid's dream.  Huge water park (that is 84 degrees all year long), MagiQuest game (a magic searching quest that takes you exploring through the resort), lots of shops (gifts, kids stuff, and swim apparel),  an arcade, glow in the dark golf, lots of restaurants and ice cream, a kid's spa (and a grown-up one too) and even an on-site Starbucks. 

Kids gone wild...

Parents are left searching for resort booze.  (yes, there is a bar - it's in the pool area).  But rooms have a fridge and microwave, so you can bring your necessary evils along.

The rooms come wolf-themed, of course.  Ours had a wolf den area for the kids with bunk beds and their own little space.  It was pretty cool.



We started each day first in line for the water park (9am) because it does get really busy.  Before 10:30 there aren't long lines for the slides, so much more fun.

For meals, you don't have to leave the resort - 2 big restaurants with kid-friendly menus, plus a take-out pizza place (that was actually good), and snacks from many of the various shops and smaller restaurants.  And did I mention Starbucks?  Cause you'll need the coffee. 

There are also other kid-friendly activities throughout the day - meeting the Great Wolf Lodge characters, balloon twisting, making your own stuffie, glitter tattoos, nightly story time by the big fireplace.



My boys had a blast - they both loved the water park.  There are activities for kids of all ages and all levels of adventurousness.  Jack even tried the famous Howlin' Tornado - the water slide that plummets you through the dark, down into a 6-story tall funnel, where you slosh and slide all the way down into the pool.  Crazy!



If you are looking for a couple nights away, this place was great.  Parents will be weary-eyed and in need of a long nap, but that look on your kids faces makes it all worth it.



Thursday, 13 March 2014

Reminder days

They suck.

Those days where you have constant reminders that part of you is sick.  Wrong.  Off.

It's been bad lately, but the last few days have been possibly the worst reminders of my lingering symptoms.  The numbness in my left foot is expanding, my toes hurt when I walk.  My right side - arm and leg - get weaker.  The fatigue is incredible.  My brain has that mushy impossible-to-concentrate sensation.

I hate that I am at the stage where I have permanent damage from this.

And it gets worse after busy, stressful days.  Parenting with an illness (or injury), in my opinion, is the hardest thing one can face.  Balancing on that invisible line of weighing your own needs against those of your children.  Those little creatures you want to put first.

But I have a lot to be happy for.  And I try to think about that every single day.  Cliché, I know.  But it helps a lot.

Jack, in grade 1, had his report card yesterday.  He's my "cheerful, friendly student who always shows a sense of humour."  He is not a serious, reserved student, or a quiet kid.  And I love that about him.  I love his silly antics that can crack the hardest of demeanours.  And I am thankful that I ended up with a son like that.  Somedays I really need him - just for that extra laugh.

The overly-proud, crazy-hugging-Mom came out yesterday, prompting him to instruct: "I know you are so proud of me, but please don't cry at the playground."

Gotta love that!


Monday, 3 March 2014

Thank you!

I owe a lot of thanks to everyone who has helped me fundraise for the MS Walk so far.  You've endured a lot of (somewhat) dignified begging and pleading.  You've seen it on repeat through all my social media channels. 

Today I reached $1000!

And I owe it all to generous donations from:

Barb
Brian and Nicole
Caitlin
Dave and Lorraine
Dorothy and Phil
Emily
Finn and Dylan
Heliya
Jack and Oliver
Larry
Laurie
Lily
Mel and Dave
Nicole
Pam and Eli
Patricia
Stephen
Tanya
The McShane family
The Meades family
The Sangan family

Thank you for sharing your hard-earned money to help the lives of thousands of people.  Thank you for supporting a cause so important to me, and for seeing the necessity of such events.

This makes me smile.  A lot.