Friday thoughts

I like to think that I am ticking along, just fine.  I like to think that people walking by me on the street have no idea what is invading my body.

Sometimes that's a nice feeling - interacting with people who don't know I have MS.  Or know about the injections, the appointments, the fear.

Sometimes it's nice to be mundane.  Regular, ordinary, un-diseased.  To get excited (again) about the small things. 

Like spending Valentine's day alone in bed at 6pm, with a glass of wine.  The silence was divine.  And the children were still supervised, don't worry.  Thank you, dear Valentine.

Like finally paying off my various student loans.  It took me ten years.  Yes, ten.  I graduated from UBC in Vancouver in 2001 then moved to England where I completed my Masters in Forensic Anthropology (Ever see "Bones?"  That's what that is, minus the suspense, guns, and sex.  Well, those plus any relevant or exciting job opportunities).  And let me put this out there - for the kids - studying overseas is not cheap.  You will probably need a couple different loans.  Or three.  But I met my husband, had my kids, so it was worth every penny, right?  (Insert witty sarcasm)

Like seeing Jack finally jump into really deep water, alone.  I watched the fear on his face from across the pool, saw his apprehension.  Then he did it.  And emerged with a giant thumbs-up.

Like having crazy bum-shaking dance parties with Oliver in the middle of the day.
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Like feeling the warm sun on my face today.

So, despite the moments I wish I could crawl into bed - and stay there for days - life still makes me smile big. 

The movement!

Thanks to my wonderfully talented cousin, we have a walk poster, and I now have a graphic for this blog.  Love the addition of the hammer!

Facts

Here is an interesting talk by my neurologist about MS drug therapies and advances.  It gives me a lot of hope for the future.

http://phsa.mediasite.com/mediasite/Play/332d2fb8ba0f4c92b2e380f0389d0b3c1d

My monitoring MRI - to decide whether to continue with my current medication or to change - and to see how my lesions are looking - will be in May.

See...!

It does exist; and it lives at Chapters.  If you, like me, laughed until you cried, then this baby will cure any insatiable thirst for knowledge you may have!

Inspiration

If MS had an embassador - a real-life spokesperson - this guy would be it.

His name is Jason DaSilva.

He has primary progressive MS (which is different than my variety - I have the more common relapsing remitting MS).  His condition is much worse than mine. 

He spent part of his life in Vancouver and now is a film maker in New York.  His newest work was just featured at the Sundance Film Festival. 

It documents his life, his journey, his MS.  And this man has become my new hero.

Here is the short trailer and website:

http://www.wheniwalk.com/

Emotional dehydration

Emotions are not coming easily to me.  It's been like this for months.  I feel this unknown weight inside of me - this weight that wants to come bursting out.  This weight that wants to cry and scream and just let it all go.  I want to let go - unload - some of this emotion.

I want to, but I can't.

Not when it comes to directly facing this.  Not when it's just me in a room, alone with my thoughts.

If multiple sclerosis had eyes, I feel like I still couldn't look into them - 5 months later.

Last night, as I was trying to fall asleep, the only thought that kept creeping into my subconsciousness was this:

"This is my new forever"

And it's true.  This is my "forever."  This will be a constant in my life.  When people, jobs, and homes come and go, this will always be here.  Always.  And I hate that.

I just need to say that... I hate that...



(I know this is depressing, sorry - but unloading it - and writing it - helps)

Support

The value of support, and in turn, it's exact important in my life, has changed so drastically over the past few months.

It comes in different forms, evokes different emotions.  But always warms my heart.

It has been little things, and big things...

The sharing of personal information and experiences to help me feel less alone.

A nice fuzzy pair of socks to "warm my tingly toes," a delivery of Indian food for dinner, or a gift from friends across the country.

It all comes down to the people - my friends, my family, and recently - complete strangers.

I joined a MS support group this week.  It is for newly diagnosed young people.  There are only 6 people in the group and we meet once a month.  We spent almost 3 hours talking about needles and injections and supplements.  We lifted our shirts and shared our bruised battle scars.  We debated treatment vs non-treatment.  We shared our diagnosis stories. 

I don't feel like I learned anything new about this disease or how I will treat it, react to it, or live with it.  But I truly learned I am not alone in this.  Reiterating this over and over again - that is crucial.

People who "get it" because they live it.  I need to saturate myself in that. 

And that very night, after my emotion-filled support group meeting, I was usurped by some Mama-friends for an evening out.  They took me to dinner and presented me with a gift.  A gift that I still, a day later, cannot fully comprehend.  These women have given their hearts, time (and wallets!) to me in perhaps the most generous showing of support I have ever seen.  They collectively decided to help me with the things I am struggling with the most - cooking, cleaning, and childcare.  Just because they could and just because they wanted to.  They have lifted some stress, brought my shoulders down a little, and I feel like I can breathe.  And smile.  Lots.