Wednesday, 17 September 2014

Gilenya Day 16

I was so, so hoping that after a couple weeks on this "wonder drug" I'd be singing its praises.

And perhaps that's still to come.

For now - the side effects are worse, and changing. 

The extreme exhaustion is still here, without signs of shifting.  (And as I've mentioned before, fatigue is already a huge symptom, and battle, with MS.  This just compounds it so much further.) 

I could sleep all day and be perfectly content.  It feels like my body is physically incapable of moving.  Every single second.

Try explaining that to a 3 and 7 year old who rely solely on you every day.  Nope.

I am also having cardiac side effects.  My chest is tight and sore all the time.  With a few "oh my god, I'm having a heart attack" zingers thrown in there each day.  It's horrible. 

This can be normal.  But it also might not be.  Gilenya does affect cardiac rhythm, but it usually only lasts up to 6-8 hours on the first day.  Hence the long first dose monitoring.

So at the moment, I don't know what's going on.  Whether this means more testing, more waiting.  All I know is those pesky daily shots (that I used to complain about) aren't looking too bad right about now.

On a higher note, though - swim camp for Jack has been a lifesaver this week.  And school is likely to start soon! 

Now if I didn't have to cook any more blasted meals or do dirty laundry, I'd be set :)

Friday, 5 September 2014


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.

Tuesday, 2 September 2014

Gilenya first dose

I was so, so nervous. 

Like my-pulse-is-raging-its-way-up-to-108-bpm-and-no-I-didn't-just-run-a-marathon, nervous.

Yes, you read that number right.  And my usual resting heart rate is around 70-75. 


That shows the extent my anxiety has on me sometimes.  Especially health issues.  Well, more specifically, health issues that require a wild gamble of treatment that potentially holds deadly side effects.

My first ECG was normal, so we were ready to start.

So I swallowed that pill.

The highlights of the day were watching a cheesy girly movie that I'd never get to watch at home.

Cough - The Other Woman - cough.

And not having to eat the crappy lunch I packed.

Gilenya is expected to lower your heart rate quite a bit, but assisted by my anxiety I began the day with a nice juicy heart rate.

And as expected, it dropped - as I calmed down, and as the medication took effect  My blood pressure dropped too.  I felt quite dizzy, very cold. 

Vitals were taken every 30 minutes for the day, and we ended with an ECG to check for anything abnormal that would require further monitoring overnight at VGH.

ECG was normal.

Time to take my weary self home - for a warm bath, comfy pajamas, and some chips and salsa.

Still a little dizzy, with some breathlessness, and an odd heavy feeling in my chest.

(all to be expected).

I'm exhausted.  And so happy this day is done.

Pill #2 tomorrow.


Wednesday, 27 August 2014

The never-ending update

Last week I had all my heart tests redone.  They are normal.   Thank goodness. 

The abnormalities picked up during the first exam have been deemed due to technical error.

My pre-Gilenya blood work and eye exam look good.... So, I get to start Gilenya.

On Tuesday!

It involves a day at a "first-dose observation centre" to monitor the expected changes to my heart. 

They told me to pack a lunch - sounds so luxurious...

The only outstanding issue is (another) form for insurance that wasn't completed months ago.  I have coverage from the province, but now we cross fingers that my private plan picks up the rest.  And it happens fast.  Cause this stuff ain't cheap.

Until  Tuesday...

Thursday, 21 August 2014

A year in review

Today is my "MS-iversary," as I've come to call it.  Two years exactly.

It's amazing how fast things can change.

How your life alters and normal becomes redefined.

The day-by-day lifestyle that comes with a neurodegenerative disease is hard.  I try, so much, not to let it consume me.

It wins sometimes.

There have been relapses, new permanence to symptoms, and more appointments than I ever imagined.

But, there has also been a great outpouring of support.  Support from people I hardly know.  From people I've known forever.  Thank you.

This past week has involved a lot of waiting.  In my world - waiting equals stress.

I repeated my abnormal heart tests, had my blood work done - it's been almost a week.  I haven't heard anything.  The waiting is killing me.  And everyone is suddenly on vacation.  At this point, I don't have a clue what's going on in terms of starting Gilenya.

Adding anxious to anxious is never good.

But, all that being said, year two has been easier.

My type-A self has learned to live with the what-ifs a little better.  The appointments don't scare me (as much).  I conquered the injections.

So, today?  Do I do something special?

As life has it - it is also A&W's Cruisin' to End MS.  $1 from every Teen Burger sold goes to the MS Society of Canada. 

I can't think of a better way to mark this day.  A donation and some awareness.

Huge thanks to A&W Canada, who have raised over $5 million to help people with MS since starting this event.

Saturday, 16 August 2014

Last one...

(At least for a while).

It was supposed to be such a momentous night.  Last daily injection.

But with the new medical issues that have popped up, a while could end up meaning a week, a month, or forever.  

Here's hoping it'll be the last-last.

Over 500 of these.  I can't believe it.



Thursday, 14 August 2014

A (slightly) pear-shaped day

Today didn't go as planned.  At all.

I arrived at the clinic for all of my pre-Gilenya tests, nervous but eager.

First, I was told my appointment had been cancelled, and that someone had called me.  Umm, nope.  Nobody did.  Apparently, though - they had also called to reschedule.  Again - nope.  The rescheduled appointment is for next Tuesday - when I am away.

Big fail, receptionists.

(Gilenya will actually arrange for community-based appointments on your behalf, so this is what will happen for the eye exam now).

I spoke with the nurse, and we decided to go ahead with my heart tests and blood work, since I was already there.  Off to Cardiology I went, to start with an ECG. 

It was abnormal.


I did the blood work anyway, and now await a rendez-vous between my Neurologist and a Cardiologist.

Seriously - I think it's about time for some good health news. 

This is deflating.

And feels a little fortuitous.