Friday, 12 January 2018

Ocrevus update

It's been nine days of hell.  Nine days of feeling so bad I thought I was losing control of my entire body.

I have been completely incapacitated.

Dizziness, vertigo, nausea, headaches, a numb and tingly foot, sensitivity to light, sound and temperature. I haven't been able to leave the house (and only sometimes my bed) because my balance is so bad.  I am so dizzy I can't shower standing up.  I can't do much for my kids.

It's brought me to tears.

So today it was time to head to UBC hospital.

My neurologist has deduced that I've had an adverse reaction to this medication (it kills off the B-cells in my blood, and apparently that was too much for my body) and that it's brought on a pseudo-relapse (meaning all my previous MS relapse symptoms have all sprung forth all at once).

I am not going to do my second half-dose next week, as planned, as it could make things even worse for me.

But, last week's infusion still counts as a dose of the medication, and it is effective for 6 months.  So, for now, I don't need to worry about not being medicated or about which drug to try next (although I can still give this one another shot in 6 months if I decide to).

For now - a bunch of blood tests to rule out other not-so-obvious issues, and more rest.

This has been my toughest ever MS related reaction.  And it's funny - I feel like you learn a lot about life and friendship in the face of illness and disease.

And I really need to thank the people who stepped up, without being asked.  The people who helped me, without excuse, and without hesitation.  You don't need to physically come here to help (looking at you, 9-month-preggo, who had meals delivered from an online company), and you don't need to do anything grandiose.  You can leave something on the porch, or just give me a call.

Anyway, I'm alive.  And still (kinda) kickin'...

Saturday, 6 January 2018

Ocrevus - first dose

I feel like I am emerging from some sort of time travelling mishap right now.  The past few days have been really difficult.

I had my first half-dose of Ocrevus on Thursday.

It was long, grueling, with many bumps along the way.

I knew there were immediate side effects that were likely.  But I wasn't expecting almost all of them.  And I wasn't expecting my body to go a bit crazy.

After starting and stopping the infusion a few times because I wasn't doing well, and spending about 8 hours doing so, it was completed.

And I've been in bed since.

Feeling a little more normal today, but still very dizzy, nauseous, and not quite with it.

I have so many more details rattling around in my brain, but I don't have the energy to sift through them all right now.

Thank you to everyone who has asked about me.  Thank you Erin and Pam for the food.  Thank goodness for you.

Next dose on January 17th, then every 6 months.  And hopefully it gets easier each time.

I'll update more over the next few days.

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.

Tuesday, 26 September 2017

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.

Monday, 21 August 2017

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.

Monday, 29 May 2017

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.