Thursday, 23 October 2014

FOUR!

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.

Sunday, 28 September 2014

Chronic illness funnies...

These.  Exactly the laugh I needed this morning...

Going to go print the bingo chart now!

 
 
 
 
 
 

Friday, 26 September 2014

Sometimes it's ok to give up

After I wore the Holter heart monitor for a day, my Neurologist wanted to see how I'd feel off the medication. 

* Insert huge thanks to the clinic nurse who has shown incredible care over the past couple weeks.  She truly went beyond what I ever could have expected or imagined.

It's tricky to "take a break" from Gilenya, as if you stop taking it for longer than a certain number of days, you need to redo the first dose monitoring rigmarole.   I tried 3 days off the medication, and definitely felt better.  The chest pressure, shooting pains and breathlessness pretty much disappeared.

Which is great!

But also kinda sucks. 

Today I made the decision to stop Gilenya all together.

This pill was supposed to be my miracle drug.  The drug that was going to make me feel normal, and vibrant, and symptom-free.

So now what?  Go through the process of deciding on another new medication, completing all the preliminary tests, figuring out if I have financial coverage? 

And the side effects - no thanks...

I can't be out of commission while attempting to parent two boys.

The temptation to go back on Copaxone is pretty strong right now.  It's familiar and did its job (sort of).

I did just find out I have full coverage for Lemtrada infusion treatments, which is something my Neurologist wants me to consider.  But this mega-drug is scary, and I am not sure if I am psychologically ready for it.

That's where things stand for now.  I see my Neurologist in 10 days to discuss/debate/run for the hills...!

Friday, 19 September 2014

Today we're going to learn about the ER...

I heard back from the nurse today (who spoke to a Neurologist familiar with Gilenya) about the chest pain and pressure I've been having since starting the medication.

Since the pains have been getting stronger, they sent me to the ER.

This little one had to come too.


Talk about a 3 hour lesson in medicine.  This guy sat beside me (and on top of me) while I had numerous blood tests, ECGs, and was hooked up to everything imaginable.

He also charmed the pants off the doctors and nurses and left known as "The Big Mr. O."

(That is, when he wasn't throwing his stuff around and threatening to "press all the buttons on the machines.")

Mommy - I see blood!  BLOOD!  Why Mommy, why is there blood?

The tests were all normal, but since the reactions from the medication could be completely random, I have a Holter heart monitor to wear at home for 24 hours.  It's like a portable ECG.  And a diary to record my symptoms.

Mommy - are those LASERS?!



I am still having chest pains and shortness of breath.  And who knows if this monitoring will actually show anything.

For now - I hope to never spend time alone in an ER with a chatty 3 year old again!

Friday, 5 September 2014

Mommy-school


Day 4 of Gilenya.

I can feel my immune system shutting off already.

It took every ounce of energy to simply get out of bed.  The exhaustion is incredible.

My head hurts, my lymph nodes are swollen and sore, and it appears that the mouth ulcers have started.

This is so hard with 2 kids at home.  One of whom should have started school four days ago.

And I am not happy.

I am not happy because our government prefers hiding behind accusatory rhetoric over solving this issue.  Our kids deserve a better system of schooling.  They deserve smaller class sizes, more EAs, more resources, and happy, well-treated teachers.

I want my kids to be in school.  I want them to be learning. 

But I seem to be left no choice right now.

So today, we will do our best.  We devised this, with seven-year-old input, until our current provincial lunacy stops:

 

Honestly - I have no clue what I am doing.  I am not qualified to teach.

But, you know what, I owe it to my children to TRY.  To do my best with what we've got.  With what I've got. 

I owe them that.

And so do you, Premier Clark.