Thursday, 29 November 2012


I have a fantastic group of online Mommy friends.  They get to hear me rant and whine and vent.  Especially now.  But you know what is so fantastic?  They listen, console, (virtual) hug, and offer advice that is do-able and works.  I have only met a few of them in real life, but the entire group of then - more than a hundred - have helped me more than I can say.

When I vented about my current mind-frame, and how alone and sad I was starting to get, many of them suggested that perhaps I was appearing to be "coping too well" to the outside eye.  Maybe it was time to share some of my other, perhaps less-pleasant, feelings.

So here goes...

I feel alone.

I feel sad.

I feel scared.

I feel stressed.

I wish I had more offers of help.  Even a phone call or email to see how I am doing.  A card in the mail or a visit for coffee and cake.  I love each and every person who is in my life, and I want them to know how I am feeling.  I know that many friends and family will not know what to say or do to make me feel "better," but that's okay.  Say and do whatever you want.  We can talk about other things.  We can just hang out.  It can be 5 minutes or 5 hours.  It all helps.  And it all makes me feel more human and more happy.  And right now, anything that enduces happiness is a good thing.

People - I miss you.  Let's have some time together.

Monday, 26 November 2012


I will push aside hunky Dexter (get it?... blood?) from my mind, and do the update...

I go to the lab every 4 weeks for a full work up to ensure my medication is not sneakily affecting my body in any negative ways.  It can be prone to do that - especially to the liver. 

I now have my baseline results, month 1 at titrating dose, and month 2 at full dose.  The scoop?  No adverse changes!  Despite the headaches, pains, chills, needle marks and red splotches now covering my "fatty bits," my body is taking this medication in; letting it do it's work.

I'll get to see my spinal cord MRI results next week to go lesion-hunting.  I only hope there is good news on that front too.

Hallelujah for small victories.  The wine will be moderately flowing on non-injection nights!

Wednesday, 21 November 2012

Three month thoughts

Three months ago today I got my diagnosis.

There has been a lot to digest in that time.  So much to intellectually understand, yet even more to emotionally understand.  Yet the need to emotionally commit myself to this diagnosis.  Fight the fear of knowing and dive head first into the unknowing.

I have come to the conclusion that if this diagnosis needs to serve a purpose in my life, that lesson is:

Learn how to lose control.  And learn how to be okay with that.

This process takes vivid and deliberate reactions to life.  Giving myself daily instructions, motivations, or guides.  Moving slowly through life; allowing myself time to gauge my own reactions.  How do I feel?  What do I think?  How can I turn this moment into something positive? 

What can I do to allow my life to re-focus and return to normality?
How do I stop myself from getting depressed, sad, lonely?

Whether it be moments, days, or longer, it was (and still is) important for me to come to this stage.  To resist the urge to wish for another body or ask “why me?”  To come to the realization that this is it.  And I am the person alive inside this body.  This is my shot at life. 

Losing control, in this sense, does not mean I plan to stop fighting against my disease.  Simply, I think it becomes an acceptance of it.  Yup, it’s there, it’s not leaving, and yes, I am still going to do everything I can to fight it.
But, like life itself, it's a process... and my new mantra of "letting go" continues...



Monday, 19 November 2012

Walk with me!

Join my team for the 2013 Vancouver MS walk!  We are called "Making Lemonade" and you can find us here:

To those who have donated already, I am beyond touched by your generosity and support.  Thank you for all the love!

Friday, 2 November 2012

A motley mixture...

Of my thoughts, that is.

My dose of Rebif goes up by 100% tonight.  It's my final bump up and my month-long drug titration is done.  My regular, "for-life" dose begins.  I almost feel like celebrating... I have survived the needles, the bruises, the weird red marks, the week-long headaches and body pains.  Now - I hope - things will self-regulate and my body will be in tune with the medication over the long-term.

The tingly toes have subsided - except for one, and the tingly fingers came and went, with just one sticking around for now.  I must be amusing to watch - tapping finger against finger - trying to figure out what feels new, different, the same - or whether, indeed - I really am just crazy.  The MS-mind is the ultimate test of anxiety-control.  Sometimes I pass, a lot of the time I fail.  There is this overwhelming sense of "waiting" that does not subdue.  Waiting for what happens next and not knowing.  Waiting to see how bad it will be and and not knowing.  And waiting for when and not knowing.

I typically do not do well with the whole "not knowing" scenario.  Another ironic twist to this diagnosis, another lesson for me to learn, another route I have to choose with acceptance.

Grounding myself in specific things helps fight this out-of-control feeling.  I am trying to be more deliberate in life.  To talk more.  To enjoy and look at beautiful things.   I finally unpacked my Grandmother's crystal wine glasses - and used one.  Sitting quietly, just looking at this beautiful glass, feeling it's weight in my hands, made me smile and think of my her.  It was a genuinely happy (with no lingering crazy-MS thoughts) moment.  Next, I meet with and design my dainty, yet significant tattoo with one of this city's most respected artists.  Now that's control I look forward to...