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.

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.

The nature of the beast

Once you have MS, you can't get rid of it.  I can never be "MS-free."

The objective, clinically speaking, is to stop it from getting much worse.

I had my MRI results and physical exam today, and there's good news and bad.  Or perhaps more accurately, good news and expected news.  Because we all know that MS usually is a progressive disease.

There are no new lesions in my brain or spinal cord.  Great news!  But, the ones I already have are doing enough damage to me physically that I need to change my disease management plan.  My physical exam corroborates the daily symptoms I experience, and shows that more progression is happening.  This may correspond to the results of my last MRI which did show brain changes.  The technology doesn't always match the symptoms.

A new medication, Ocrevus, just approved by Health Canada, will be my new poison of choice (assuming my extended health benefits will pay the $80,000-ish per year.  Which they should).  With any mega-expensive medication there is a lot of paperwork and time involved, so I don't know when it would begin.

I'll be one of the first on Ocrevus not in a clinical trial.

Ocrevus is a humanized anti-CD20 monoclonal antibody given by intravenous infusions.  This means it acts as an immunomodulating drug by targeting and removing potentially harmful B cells (a type of white blood cell that healthy people need and everyone has, but this medication removes them in people with MS to try and wipe out and "reset" the immune system).

So, it's a scary medication, and will involve much more testing and monitoring.  There are many side effects that will come into play that I haven't had to deal with yet.  But I've had this medication in the back of my mind for years, and followed the clinical trials.  I just never felt ready enough to take this next big step.

But it's time now.  And I feel more ready.  I really want to face the progression of my MS with some force.

Five years

My MS, and this blog, have taken a distant back seat this past year.  I simply have not had the extra energy to put the focus on ME.  I had to be with my Mom, mourn my Mom, and attempt to re-start my life without her.

(the latter is still very much a work in progress).

But today, I take a moment to reflect.

Five years ago my life was changed. Altered not because I wanted it to. Not because I had achieved a goal or won an award.  But because I was handed a diagnosis that would challenge every ounce of who I thought I was.

Every idea that crept through my brain. Every expectation for my future.

It was a lot to accept that day, and sometimes still is.

But I have resolved that I am okay.  I can do this.  I can still live and love and carry on.

I know that MS will still bring many challenges.  Many tears.  Many worries.  But I also recognize that living with MS has made me an emotionally stronger person, a more assertive person.  And, perhaps most importantly, a more thankful person.

So, each year, on this MS-iversary of mine, I think about the day my future changed.  I think about what it has enabled me to do, and I remind myself that I can celebrate all that I have overcome.

Thank you!

The 2017 MS Walk was a great success!  A beautiful day for an important cause.

Team Making Lemonade's 5 year fundraising total is over $26,000!

To everyone who supports me or the MS Society - thank you!

And to my team - seeing your smiling faces each year means more than you know.  Thank you for your continued presence and for being my foundation.  You help bring a lot of hope into my life.

On Mother's Day

There are a million thoughts swirling through my head.

It's my first without my Mom.

It is surreal.  Ugly.  That sick-to-my-stomach feeling.

The build-up to this day.  The cards and gifts in the stores have been a cruel reminder of the pain of the last 6 months.

Right in my face, and so unavoidable.

I never imagined losing my Mom while in my 30's.  While still looking for, and needing, that guidance and reassurance in raising my own young kids.

Missing that support and friendship only a Mother can give.

Today I choose to celebrate the Mom that she was.  How she raised her daughters with many important values.  And how lucky we were to have her.

I hope to pass to my kids the things she taught me.  To show them strength and perseverance and unconditional love. To show them the beauty of life.

This incredible woman taught me how to be a Mom.  That is a gift I hold very dearly.

I miss you so much, Mom.  But even with the tears, today I celebrate you.

2017 MS Walk

As I've admitted to some, I wasn't sure about this year's walk.

Not because I didn't want to walk, or fundraise, or continue with my role with the MS Society.  But because it's been the hardest 6 months of my life.  Because there has been so much sadness.  So much grief.  And so much anger.

But I've come to realize there is still a lot of hope.

A lot of hope for so many things.

For cancer.  Which will now forever be held differently in my heart.  And also for MS.  A cause I am still very committed to fight for.

So I'm slowly dusting off my yellow and getting ready for another year of fundraising, awareness, and fun.

Our team is walking for the fifth year (which I think is pretty awesome) and we have raised more than $22,000!  I am so proud of team Making Lemonade!

Click here to see my personal fundraising page.

If you want to join the team and walk with us, or make a donation, you can do both online.

And thank you to the early donors.  You guys are awesome!