Friday, 25 July 2014

The Gilenya-process

The wheels have started turning already.  Thanks to a very organized and efficient nurse, all of my preliminary tests have been scheduled for right when we get back from holiday, and all on the SAME day!  That is an amazing feat in itself.

August 14th begins my new Gilenya journey.

And before the end of August I'll have my day-long hospital stay for first-dose monitoring.

Despite my anxiousness over starting a drug that has scarier potential side effects, I am listening to my Neurologist, believing the research I have done, and feel comfortable with this decision.  I need to be on this medication in order to slow down the process of permanent disability.

And I am positively giddy over losing the daily injections!

Wednesday, 23 July 2014

A decision

I have been hemming and hawing for a long time now.  A really long time.

I was wondering what was going to have to happen in order for me to make this drug decision.

I think it happened today.

(and it has nothing to do with MS, or health, or anything, really).

My car unexpectedly needed new tires and new brakes.  I needed to hand over a lot of money.  I was emotional and stressed.  And when it came time to pay, and the job hadn't been done to completion (or to my satisfaction), I called them out on it.  It was nice to feel in control, and to argue for something I felt wasn't done right.

And for whatever reason, this event made something click.  I could stick up for myself, and coherently explain what needed to be done.

When I got home, I emailed the MS nurse and told her I had made a decision.  I am going to go with Gilenya.

Firstly - it will be covered by Pharmacare.  Secondly - it's been almost 2 months, and I still haven't heard a peep about whether Lemtrada will be covered by my extended health plan. 

Too slow.  I need to move on. 

Deep breaths.  I made a decision!  Now I need to arrange for my preliminary tests on my heart and eyes. 

But first - almost time to head to the place I spent my summers growing up.  Some time on Skaha Lake.  My very favourite happy place.

Tuesday, 8 July 2014


News - Pharmacare (and my insurance company for the rest) will cover the cost of Gilenya for me. 

It is double the cost of my current MS medication, about $40,000 a year.

(This is not to be confused with the medication Lemtrada - the super expensive treatment I mentioned in my last post - which I am still waiting to hear about).

One down - one to go. 

It's a positive step, simply by getting an answer, but now the decision I have to make looms closer.

A skill I definitely do not have - making a decision and sticking with it.

Monday, 7 July 2014

What's new?

Well, the crippling vertigo and dizziness lasted 6 days - I am so glad to see it go.

It was replaced with another round of food poisoning.  Equally unsettling; a thousand times more disgusting.

Running on about 80%, I thought it was time for some updates.

Jack is almost seven.  I cannot believe it.  He has suddenly merged into this pre-pre-teen version of his former self.  He can sing along to all the songs on the radio, shushes me when I am "too embarrassing," knows technology better than I do - and has the teenage attitude to go with it. 

He's a fun-loving little man who is hard to keep up with!

Pogo stick mania!

I also had a fun photo shoot with the MS Society for their Canada day campaign - ACTIONonMS.  It was so rewarding to be part of the series of photos sharing information about MS in Canada.


And finally - a letter from my extended health insurance.  I opened it with such mixed emotions.  If they will cover the cost of Lemtrada - do I go for it?  Or do I play it slightly safer, as I usually do?  A huge decision.

But one saved for another day, as it happens.  The letter seemed to be more of an insurance-stall than anything.  "They have not received all the information they require from my doctor, but cannot contact the doctor themselves.... blah, blah."

What further information do they urgently need to know?  Wait for it..."What is my diagnosis."

(They know that already).

Really?  5 weeks for that?  Pfft.

So, what's new with you?