Monday, 16 October 2017

The chronic illness collective

Living with a chronic illness is a really lonely experience.  Unless you live it, it's hard to understand it.  It's hard to grasp why someone looks okay and is out doing "normal" things, when they are chronically sick.  Or the biggie - why they don't work.

I get this one a lot: Now that your kids are both in school, what do you DO?

It's hard to answer that one.  I do lots of things.  I run a household, take care of my kids, coordinate their lives, but a large portion of my life is spent being a patient, advocating for my health, going to many, many appointments, and sometimes not feeling that well.

Sometimes I can handle one task in an entire day, sometimes I wake up and cannot do anything without feeling like I am going to fall over.  Some days I can do everything.

And occasionally people question that, or simply change or ignore the subject.

My friend Emily, who lives in Nova Scotia, gets it.  And you know what?  We've never even met.  

Her blog post, which you can read here, is what prompted me to write today.

She lives with a chronic illness called neurofibromatosis, has two young boys (who also never stop moving), and has dealt with the loss of her Mom to cancer much too soon.  We've got a lot in common.  

She mentions an article called 15 Secrets of People Who Cant Work Because of an Illness.  I read it this morning and really needed it.  I'm very dizzy today, feeling a little sorry for myself, kind of wishing this would all go away, but after reading it, felt a little stronger.  I feel the comfort that Emily speaks of.  I feel the support of this collective group, whether they are near or far.

So thank you, Emily.  You made my day a little brighter.

Friday, 6 October 2017

Ocrevus info

It's been busy getting this Ocrevus ball rolling.

When dealing with any medication this new and expensive, you first need to tackle the paperwork. Because it's only just been approved in Canada, it is not covered by Provincial plans yet.  But, the amazing news is that my extended health benefits will cover 100% of the cost once they authorize the forms from my Neurologist.

Hopefully this happens within a few weeks.

Meanwhile, I need to undergo extensive pre-testing.  Because part of my immune system will be killed off by this medication, they need to check to ensure I don't have any underlying infections or other conditions.  My body needs to be able to function with part of my immune system gone.

Today was blood and lab day.  So much blood.  You know those requisition forms you get for blood tests?  Imagine that with every box checked off, plus more added.  And as someone who gets a lot of blood tests and is not squeamish at all, today was a first for me - I fainted afterwards.  Fun times...

Meanwhile, my fatigue and vertigo have been bad the past few months, so I am itching to get this started.  I really hope it makes some difference in my day to day life (minus the few weeks I'll be recovering after the infusions, slathered in sanitizer, wearing a face mask and hiding!)

I'm still feeling positive, but sometimes this all really sucks.