Thursday, 23 October 2014


At 12:37am on October 23, 2010, Oliver Rhys came into this world.

It was a quick entrance for the little guy who weighed just 5 lbs. 14 oz.

It had been a high risk pregnancy, most of which was spent on bed rest.  Only three years before, after Jack's birth, I had emergency surgery to repair a ruptured uterine artery from an arterio-venous malformation.  The surgery left me with no blood supply to the right side of my uterus.  It was traumatic and devastating.  I was told I wouldn't be able to have more children. 

Boy were they wrong.

There are only a handful of documented pregnancies after this procedure, so we walked on eggshells.  Even the doctors couldn't tell me what to expect.  There was no way of knowing how he would be affected.  We could only wait - and wait, and hope that somehow this pregnancy would be okay.

Sometimes I call him my miracle. 

He's here for a reason.

He's defied a lot of odds, this boy, with a few hurdles along the way.

And that's why he's so amazing.  He fights, he persists, and he proved the medical world wrong. 

(Which is always kind of cool!)

And here we are, four years later.  I remember how overwhelmed I felt that day.  Full of worry and uncertainty about his health.  Now I look at my sweet boy, revel in his accomplishments, and wish I never had that fear or doubt.

My Oliver, you are a bright, imaginative, caring, thoughtful boy.  You have taught me to value life, to expect the unexpected (!), and to love unconditionally, always.

Thursday, 9 October 2014

Burn baby burn

Oh how I missed the sweet sting of Copaxone.  Like a thousand bees piercing my flesh for thirty minutes.

We're back in business over here, and it was only a little bit bloody.

And I am so, so happy that I know what to expect when I wake up tomorrow morning.

Here's to 10 hours of sleep... and sparkles, rainbows and unicorns.

Monday, 6 October 2014

Happily backtracking

Phew.  I am happy that appointment is over.

I was kind of scared to tell my Neurologist that I wanted to go back on Copaxone.  I know he wants me on something stronger in order to keep that spinal cord lesion at bay and to really work aggressively to prevent future disability.

And although I am lucky enough to have full coverage of Lemtrada - situationally and emotionally, I am not ready to take it.

He was great - he understood my family obligations and how I just can't be 100% out of commission for at least a month while my immune system gets obliterated.

For now - I can't do it.  In a year - maybe.

Plus - it's kinda scary.

So, perhaps to the chagrin of Neurologists treating MS these days, I am (sort of) going backwards.  But my Neurologist understands, supports the decision, and feels my MRI shows that I have time before treating more aggressively becomes more urgent.  I tried the Gilenya as best I could.  And got the Holter monitor results today, which did show some atypical ventricular and supraventricular ectopic beats, as well as isolated beats.  All this probably caused by the Gilenya, and explains how horrible I felt.

Copaxone is a first-line drug with the least harmful side effects.  I was on it for almost a year and a half.  Was it the most effective medication for me?  Probably not.  But was I able to get through daily life without worry, and side effects, and trips to the ER?  Yes, absolutely.

I still have to monitor the effects of Gilenya over the next few months, but for now - I get to start sticking myself with needles again.  Crazily enough - I am happy about that.