Yellow!

And lots of it!

What I perhaps lack in fundraising prowess, I will make up for in all my yellow glory.  I think team Making Lemonade will be "best dressed" again this year.

The fun we have on walk-day is incredible.  Simply because of our own self-induced costume-craziness.

Thank you, Hema - who is braving life with a brand new baby (and 4 year old!) -  for selflessly offering to fabric shop with the I-can't-sew-a-button-on me, and for making me a wondrous yellow creation.

Tulle.  Lots and lots of yellow tulle...

Funny lemons?

Lemons seem to have become my thing.  Funny (or corny) lemons are even better:

"Why did the lemon disapprove of his daughter?
Because she was a little tart!"

 

(maybe close your screen before the kids see that last one.  Lots of questions...)

Last one:  The dark side of a Lemon Drop...

What did the lemon say to the lime?

Sour you doing?

Read more at http://www.top10-best.com/l/top_10_best_lemon_jokes.html#HjSFdiFzl5BVwPML.99

Why did the lemon disapprove of his daughter?

Because she was a little tart!

Read more at http://www.top10-best.com/l/top_10_best_lemon_jokes.html#HjSFdiFzl5BVwPML.99

What did the lemon say to the lime?

Sour you doing?

Read more at http://www.top10-best.com/l/top_10_best_lemon_jokes.html#HjSFdiFzl5BVwPML.99

MS fiction

There are a lot of MS myths and misconceptions out there. 

And because it is such an individualized disease, a lot of these myths get over-exaggerated to the point of Well, my friend's sister's sister's daughter has MS and she needs a wheelchair.  So, you must too.

Not necessarily true.

I hear things like this all the time.  In person, by phone, email, and social media.  It's frustrating.

Here's a good list of common myths associated with MS.  Some of them more true than others.

For me, there is zero family history of MS, or even anything auto-immune. 

I like this article because it touches on pregnancy and breast-feeding with MS, which has been a huge fear and unknown for a lot of people.  But I also want to mention a few other common myths.  MS is not contagious.  There are different types of MS.  You don't get MS because you are unhealthy or inactive.  There is no control over it.  MS is not the same as Parkinson's Disease or ALS (Lou Gehrig's Disease), even though there can be similar or overlapping symptoms.

I am not surprised that MS is on the rise.  And it is interesting that the relative percentage of women with MS, compared to men, is rising to levels never seen before.  That touches on, and perhaps credits, the involvement of hormonal factors.

Generally, because of earlier diagnosis, better healthcare, and better treatment plans, MS no longer holds the same connotations it did decades ago.

Ouch!

A few weeks ago I did something to my back.  No fall, no injury.  It just appeared.

I endured through the pain, trying everything under the sun to fix it.  Muscle relaxants, pain medications, hot packs, cold packs, stretches, DIY-massages.  It was finally starting to feel better.

Yesterday it was so bad I could hardly move.  Worse than labour - both times added together.

Plus my usual MS symptoms started to flair up again in my hand and foot.  Was this a relapse?  Back pain for mobile MS patients is usually not an issue, but I wondered if this wasn't just a huge auto-immune reaction, back now included.

I went to the ER in so much pain I really just wanted a shot (or two) of something right there and then.  I would have done it myself.

They thought it could be kidney stones, or perhaps new symptoms related to the transverse myelitis aspect of my MS (spinal lesions).

X-rays and kidney tests later, it's decided I have sprained my sacro-iliac joint.

And it was the fastest visit to VGH ever - thank you, pre-existing disease.

A bunch of meds and four days of bed rest to start. 

Wish me luck staying put...

He joined the skipping club.

To be healthy.

To get exercise for his body.

Both great.

And so that he doesn't get MS.

Oh no...

He is not the kind of kid who skips; or the kind who joins the miss-out-on-playground-time to skip in a gym full of girls.

The wheels are turning again.  He thinks a lot about MS, and about health in general.  It goes silent for a few months, then goes into full force.  He worries about what is going to happen to me, and he worries that he'll get MS.  Neither of those have definitive answers, so I reassure him as best I can.  I show him the books I have that describe MS, and explain that it's not something he needs to worry about or can be "caused" by anything he might do.  And that, with treatment, is a disease I can manage.

He's also been asking questions to adults other than me.  How do people get MS?  What causes it?

And he knows my nightly injection routine right down to ice-pack time.

I worry about him.  Is this normal?  How will this affect him now?  And growing up?

Most of the time he's the most typical 6 year old boy I know.  He loves Lego, being silly and running around like a lunatic.  But other times, he's got the weight of the world on his shoulders.

It's hard.  Most of the time I have no clue what to do. 

There are always going to be reasons to worry about your kids.  For anyone, anywhere.

Childhood anxiety is new to me.  Especially now that I can see it rolling into other areas of his life.

Thoughts or experiences?

Let's get this party started...

Well, it's a walk, not a party.  But now that I have your attention...

It's normal for the momentum surrounding someone's personal cause to fizzle out over time.  Things become habitual, life carries on, people move it to the back of their minds.

And there are other causes people would rather support.  I completely get that.

When I started my blog and my fundraising group last year, I knew this would be the case.  Honestly, though, I did not expect such a huge difference.  It's slower this time.  With not as much excitement.

This year, I wonder.  People seem more reluctant to join the team or to donate.  Is this because it's not a new thing for me?  MS is not the monopolizer of all my thoughts?

So, I am writing to share with you my passion for this cause. 

This journey is one I'll never be able to leave.  One that changes, alters, gets better, gets worse.  I fight it every day - sometimes silently. 

Some days just thinking about it consumes me.  I worry about my odds - will I be able to walk next year?  In 5 years?  10 years?  Will I lose my sight again?  What will this do to my children's lives?

Other days, weeks even - it hardly gets a second.  Just a fleeting glance as I inject my medication.

And the support, in whatever form, I get from anyone, at any time of the year, is appreciated and cherished.

But the rallying together for one big event really drives this home for me.  I can fight this battle.  And there is hope for my future. 

Being surrounded by people you love, supporting and cheering, is one of the best feelings in the world.

I hope this doesn't come off as a plea for your money.  It's not.  Because really - joining the team (for the locals) means much more!

And for those who have had to endure this ramble on more than one occasion - thank you for just smiling and nodding!

Knock on wood

Or, as my Nanny used to do, I'll knock on my noggin.

This is the longest stretch I've had without new symptoms and without the need for IV steroids since my diagnosis.

The usual stuff persists, but I am happy to live with it.

And life is much easier without that slightly-manic what if  that creeps in with new symptoms.

In fact - it's freeing.  The energy that usually is devoted to such worry is now being spent on reading more, playing with the boys more, and of course, just sitting - still.

It is also time to really get going with fundraising for the MS Walk.  If you haven't joined the team already, click here to join.

And if you'd like to donate to this very worthy cause, any amount is much appreciated.  You'd get a super cool button too: