When life's a beach...

You forget about all the bad things. 

The things you need to do; need to remember.

You forget about all the doctors appointments, the tests, the injections, the pills.  And what it all means.

You stop making lists and just let life soak right in.

For 5 (short) days, I forgot about my MS.  I didn't once think about what my future holds.  Whether 10 years from now I'll be able to make this same trip or not.  For 5 days I felt healthy, alive, and worry-free.  Probably the most I have been this past year.

I marvelled in watching my boys play in the water and sand.  I felt like I was watching them grow-up.  A lakeside rite of passage, if you will.

Air-dried hair and no make-up is fantastic (for a while).

A recharge was exactly what was needed. 

And what better place to do those awful injections...

Childhood

This is my happy place. 

I envision sitting out on the dock whenever I need to relax and take in a few breaths of calm.  Listening to the sound of the waves lapping against the shore.

It's where I spent every summer growing up.

And now, for the first time, I will bring my kids here.  It's an odd feeling being the adult now and not the child.  Not the teen escaping from her parents or day-dreaming about her grown-up life.  Now I'm the Mom, with much bigger fish to fry.

It's kind of emotional going back.

I hope (after 6 hours in the car - each way - with the boys) it remains in such high standing.

I'll be back in a week!

Candid disclosure

This is less post-like and more collective-rambling-of-thoughts.

Today I am thankful for MRI cancellation lists.  My repeat spinal cord MRI appointment has been bumped up to this Monday!  I am especially thankful that my Neurologist's hand written request on the referral seems to have worked.

I can feel that my spinal cord symptoms are the ones acting up lately, so getting this report will ease my scrutinizing personality.

I also want to acknowledge that I've been a cynical bitch lately.  Unless you too have MS, or a variant of it, you can't truly understand this.  I now know I don't like comparisons between people and situations.  It does not help.  If you've been a victim of this cynicism - sorry, it's nothing personal.

My facial symptoms are gone for now, and what I can physically feel is my usual numbness and weakness in my extremities.  I notice I drop things; am more clumsy than before; need to be weary of which foot or which hand does what.  It's the little things I never would have thought about - like buying flats to wear to a wedding because I can no longer do heels - safely or gracefully.

And although not great, I am thankful for these little things.  Because, despite them, I can walk, I can speak, and unlike this time last year, I can see. 

And, more so than ever, I am amazed at what the human spirit can do.  Cliché aside, It feels like all the work - and this has been hard work - to get to the mental space I am in right now has finally been worth it.

Lots of this 'work' I haven't spoken much about before.  Partially because dealing with the stigma of having MS can be enough in itself, but also because, as a society, the subject of mental health doesn't usually garnish a second's attention.

But it should. 

I credit my growing acceptance of MS to re-working my thoughts and my reactions; to learning more about the biology and physiology of what is happening to me. 

To weekly therapy. 

To monthly MS support group meetings.

To the use of anti-depressants and anti-anxiety medication. 

Because really - when you already have issues with anxiety and stress, how could this diagnosis not make it worse?  Diet, meditation, medication and relaxation have become important parts of my daily life - as best I can.  MS and non-MS.

I can't just sit here, snap my fingers, pop some pills, and hope to feel happy.  I need to create that for myself.

Finally, I don't feel consumed by every new twitch, tingle or misguided sensation.

At least for now.  And that's all I can ask for.

Six

Of all the things that define me - name me - motherhood is perhaps the greatest one.

The most important, the most all-involving, the most put-your-heart-out-there-and-hold-on-tight.

I became a Mom exactly 6 years ago.  At 2:31 am to be exact. 

And since then, every breath is different, every thought takes just that extra second to produce.

Not because it's work, but because these little beings that come into your life actually become your life.  I feel their happiness, sadness and achievements as if they were my own.  And I love that.

Today, as my oldest says good bye to everything baby, everything toddler, everything kindergartner, I am going to try not to close my eyes.  For it all passes way too fast.

Happy birthday to my amazing, very busy, boy Jack.

(that's him, age 2, swinging Jack-style)

Something new...

I've developed a new symptom over the past day or two.  I noticed it first on my feet, and now it's my nose and right side of my face.

It feels like my skin is crawling.  Like a colony of ants is marking its territory.

It doesn't necessarily hurt, but there is a pressure-like feeling on my skin that has me grabbing and rubbing these imaginary creatures away. 

So, if you see me tapping the side of my nose, there isn't any hush-hush-criminal-activity going on.  It's just these pesky nerves of mine...

Sigh...

Living the life?

So far, I like taking Copaxone.  Mostly in the sense that it doesn't make me feel quite as crappy as the Rebif did.  It works with my body, and generally, so far so good.  No night shakes at 2am, no constant flu-achiness.

But - I very much dislike the frequent mailings I receive preaching how a person with MS should spend their time.  Of course, I realize that many people with MS have symptoms, and daily life, much worse than I do.  But I also realize that Copaxone is considered a "first line therapy" for MS - meaning that you try it first, usually soon after diagnosis, as something to start with.  People who have progressed to secondary progressive MS do not take this medication.

I am still relatively young (barely hitting my mid-thirties) and have two young kids... am I supposed to call it a day and pack up life?

Yet, apparently, this is how I should be spending my summer:

I find this very condescending - even insulting.  And I think it goes back to the issue of not feeling "sick."  Right now I want to spend my time playing with my kids, enjoying life, and attempting to get back to my adventurous earlier years (of course focusing on the adrenaline-esque activities and not the "let's see how much cheap strawberry wine we can drink" years). 

A good pair of binoculars is definitely not on my to-buy list.

Injection

Some people are curious.  Some have asked.  So here goes.

Nearing almost 200 self-injections since October, I am ready to share.

This is a manual Copaxone injection.  It happens daily - in rotating locations around my body.  Tonight it's my stomach area.

I am not sharing this for praise or applause.  Despite how scared I was to start - it's normal now.  And I am okay with that.

I am baring my two-babies-wide tummy for those who are struggling with medication choices; for those who think they can't; for those who are scared.  You can do this.  You are strong.  And soon, for you too, this routine will become a boring old habit.

Heat wave

I have never been so sweaty in my life. 

That's right - in Burnaby B.C. - it feels like 38 degrees. 

But it's not an enjoyable heat.  It's a slicked-with-sweat kind of heat.  A state of perma-frizziness.  Our townhouse soaks up the heat.  Bottles us in like we are baking.

Heat and MS do not go well together.  Why?

Heat can produce a temporary worsening of symptoms but usually does not cause more disease activity (demyelination of the nerves themselves).  Heat intolerance is most commonly seen as decreased cognitive function, numbness in the extremities, fatigue, blurred vision and weakness.

This is caused by a rise in body temperature. Damaged nerve cells (the lesions in my brain and spinal cord) are much less efficient when the body’s core temperature rises, and functions or sensations associated with those damaged nerve cells will appear worse.

The immune system also becomes more active in any situation when there is a rise in body temperature.  This can manifest a situation where white blood cells are produced to fight an enemy within one's body.  With MS, unfortunately, there are no infections to fight - and these chemical reactions destroy healthy tissue instead.

So yes - this means my hair will be wet and frizzy until it cools down.  I will have ice packs all over my body.  And I am *this close* to sitting topless right in front of our portable air conditioner.

For those who love the heat, enjoy!