A schmaltzy Christmas

The presents have been opened, lots of wine has been consumed.  The half-dead tree dragged to the curb.

The frenzy of Christmas seems to be petering out.

Despite the various forms of flu currently festering, I am finding myself counting my blessings.  All of my swallowing test results are in - and they are all normal.  There are no anatomical or functional problems with my larynx or esophagus.  I can still choose to have an endoscopy done in March to look for further issues.  But for the most part - my swallowing is back to normal.  I don't have to watch what I eat, or when I eat.  It's so nice.  We just assume it was a month long relapse of sorts.  All of my blood work just in case also came back excellent, which was a huge relief. 

We have had an abundance of family time this Christmas, with family visiting from the UK.  It's so nice to watch the boys have some extra people here to love, play with, fight over - and of course - to help babysit!

My mushy side can come out during the holidays.  I think I love these guys just a teensy bit more right now.  Maybe it's their Christmas awe, maybe it's because we can sleep in and there's no homework to get done.  Or maybe it's just because I love watching them love each other.  With no fighting. Or kicking.  (Santa's still watching...)

And look - YES, they are sleeping together.  And YES - they are holding hands!

I hope you and yours had a magical Christmas too!

The swallowing saga

It's been a month of the delights of dysphagia. 

I've managed to do my barium swallow and fluoroscopy.  Which were a treat.  Nothing like downing 3 cups of unflavoured barium in record time, to be put on a topsy-turvy table, tipped back and forth, all while being poked by a radiologist "to get it all moving."  I will get those results this week.

And today, in record time, I had a consult with a gastroenterologist.  Another appointment with a 4-year-old in tow.  Considering this is my new speciality, I was wiser this time.  We stole his brother's 3DS, and it kept him mesmerized and quiet the entire time! Although this doctor is also suspecting MS activity as the cause of the dysphagia, he still wants to do an endoscopy to see if there is any esophageal narrowing and to take biopsies (once you're in there you might as well just do everything...).  That doesn't happen for a few months.

So many appointments, soooo little time!  Only about 5 more to go before the Holidays.  And one final post-Gilenya check.

Squeeze in a haircut, and call it a day...

2015 MS Walk!

I'm pretty sure I was the first to register (again).

But this is my thing.  The thing that spurs me into action each year, working hard to raise money for the MS Society of Canada.

It makes living with MS just a little easier; it makes me have hope.

The walk is later this year - in May, so the weather should be perfect.  And it has a new location in Vancouver, at the Plaza of Nations.

My team - "Making Lemonade" - has raised over $14,000 from the past two walks!  Thank you to all the amazing people who have helped to make this happen.

Let's try and continue the success this year.  If you'd like to join the team (please do!) or donate, here's is the link to my page:

http://mssoc.convio.net/site/TR/Walk/BCandYukonDivision?px=1643137&pg=personal&fr_id=4221&s_locale=en_CA

MS fast fact - Dysphagia

Dysphagia:  Difficulty swallowing.  Usually indicative of a problem with the mechanisms controlling the movement of the mouth, throat, and/or esophagus.  It is common in people with MS, can become a permanent manifestation of the disease, or be associated with a temporary relapse.

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It's been 2 weeks now, and after a choking-during-dinner episode, I thought I just had food stuck in my throat.  It would pass in a couple days, I told myself.

But it hasn't, and it's getting worse. 

It's a odd sensation.  I can swallow, but I can't.  Like my esophagus just won't allow food to move down it easily. 

There could very well be something stuck in there, but there also might not.  And these sensations I am feeling could be right-on-par nervous system damage.

Today I finally got the ball rolling and now have a series of appointments.

I start with a fluoroscopy next week, to watch the mechanics of how I actually swallow (on x-ray, which is actually pretty cool).  I am waiting for an endoscopy to take a physical look down my esophagus as well. 

But there's a wait for that.  So if you, or anyone you know, is an ENT specialist, I am your new best friend.  I pay in wine and (sometimes) useful parenting tips... Ha!

It's a frustrating process.  Something is definitely not right.  But is it my MS? It's highly likely, but who knows.

I'm kinda just hoping I wake up tomorrow and feel normal.

Not too much to ask, right?

What's an Ambassador?

I was asked to be an MS Ambassador way back in May.

I like to think it was because of the blog, but really, I think it was all that yellow.  Two years of walks, and lots of lemons, to boot.

Not easy to ignore.

I was able to unofficially get involved over the past few years with TV spots, local newspaper interviews, the Action On MS campaign, and involvement with the International MS Federation.

But this weekend it finally came a little closer to home.  Along with my new MS "bible" this was my official training.  It was an intensive time full of presentations, people, mingling, chatting, and learning.

And lots of coffee.  Plus a long nap.

So - what exactly do I do?  It varies, and depends on what I am needed for.  It can mean speaking to groups of people, or at events, to people with MS or without, speaking to the media or to government, and to be "a face" for the disease.

I have known the staff at the MS Society of BC since my diagnosis, and cannot say enough about them.  But this was my first chance to meet Dr. Karen Lee, VP of Research for the MS Society of Canada.  I follow her through social media, so feel fairly connected to the research and development in MS.

Listening to her speak about the actual stats on MS; the stats about research dollars, how they are allocated, and how they sometimes need to be spread thin, was something new for me.

The piece that hit me perhaps the hardest - discussing the prevalence of depression and mental health issues in people with MS.

Then comparing these people to those with ALS.

Two similar, yet different neurodegenerative diseases.

ALS has been in the media a lot recently with the ice bucket challenge.  It is a disease that is typically radically more progressive than MS.  It becomes more serious, more quickly.  It is a terrifying disease.

However, as I learned, the rate of suicide is much higher in people with MS than with ALS.  Simply because, unlike ALS (or, another example that was given to compare patient populations, cancer), absolutely no prognosis can be given to the patient.  There are no estimates of when things will happen, or how bad things will get.  There is no certainty at all. 

I completely get this statistic, and the logic behind it, but was still shocked by it.

(So when I try and hit you all up for MS Walk donations in a few months, let's try and remember the other sides of MS - like mental health, and the great need for better support.)

It was a very worthwhile weekend for me.  And I am so, so grateful to have this opportunity.

Family...

These guys keep me on my toes, but also keep me going.  There is a new importance placed on doing more together.  Seeing more.  Saying "no" a little less often.

The role of family is hard to put into concise words.

So I'll let these moments, captured by the talented Penelope Slack, do it for me.

 

 

 

FOUR!

At 12:37am on October 23, 2010, Oliver Rhys came into this world.

It was a quick entrance for the little guy who weighed just 5 lbs. 14 oz.

It had been a high risk pregnancy, most of which was spent on bed rest.  Only three years before, after Jack's birth, I had emergency surgery to repair a ruptured uterine artery from an arterio-venous malformation.  The surgery left me with no blood supply to the right side of my uterus.  It was traumatic and devastating.  I was told I wouldn't be able to have more children. 

Boy were they wrong.

There are only a handful of documented pregnancies after this procedure, so we walked on eggshells.  Even the doctors couldn't tell me what to expect.  There was no way of knowing how he would be affected.  We could only wait - and wait, and hope that somehow this pregnancy would be okay.

Sometimes I call him my miracle. 

He's here for a reason.

He's defied a lot of odds, this boy, with a few hurdles along the way.

And that's why he's so amazing.  He fights, he persists, and he proved the medical world wrong. 

(Which is always kind of cool!)

And here we are, four years later.  I remember how overwhelmed I felt that day.  Full of worry and uncertainty about his health.  Now I look at my sweet boy, revel in his accomplishments, and wish I never had that fear or doubt.

My Oliver, you are a bright, imaginative, caring, thoughtful boy.  You have taught me to value life, to expect the unexpected (!), and to love unconditionally, always.

Burn baby burn

Oh how I missed the sweet sting of Copaxone.  Like a thousand bees piercing my flesh for thirty minutes.

We're back in business over here, and it was only a little bit bloody.

And I am so, so happy that I know what to expect when I wake up tomorrow morning.

Here's to 10 hours of sleep... and sparkles, rainbows and unicorns.

Happily backtracking

Phew.  I am happy that appointment is over.

I was kind of scared to tell my Neurologist that I wanted to go back on Copaxone.  I know he wants me on something stronger in order to keep that spinal cord lesion at bay and to really work aggressively to prevent future disability.

And although I am lucky enough to have full coverage of Lemtrada - situationally and emotionally, I am not ready to take it.

He was great - he understood my family obligations and how I just can't be 100% out of commission for at least a month while my immune system gets obliterated.

For now - I can't do it.  In a year - maybe.

Plus - it's kinda scary.

So, perhaps to the chagrin of Neurologists treating MS these days, I am (sort of) going backwards.  But my Neurologist understands, supports the decision, and feels my MRI shows that I have time before treating more aggressively becomes more urgent.  I tried the Gilenya as best I could.  And got the Holter monitor results today, which did show some atypical ventricular and supraventricular ectopic beats, as well as isolated beats.  All this probably caused by the Gilenya, and explains how horrible I felt.

Copaxone is a first-line drug with the least harmful side effects.  I was on it for almost a year and a half.  Was it the most effective medication for me?  Probably not.  But was I able to get through daily life without worry, and side effects, and trips to the ER?  Yes, absolutely.

I still have to monitor the effects of Gilenya over the next few months, but for now - I get to start sticking myself with needles again.  Crazily enough - I am happy about that.

Chronic illness funnies...

These.  Exactly the laugh I needed this morning...

Going to go print the bingo chart now!

 

 

 

 

 

 

Sometimes it's ok to give up

After I wore the Holter heart monitor for a day, my Neurologist wanted to see how I'd feel off the medication. 

* Insert huge thanks to the clinic nurse who has shown incredible care over the past couple weeks.  She truly went beyond what I ever could have expected or imagined.

It's tricky to "take a break" from Gilenya, as if you stop taking it for longer than a certain number of days, you need to redo the first dose monitoring rigmarole.   I tried 3 days off the medication, and definitely felt better.  The chest pressure, shooting pains and breathlessness pretty much disappeared.

Which is great!

But also kinda sucks. 

Today I made the decision to stop Gilenya all together.

This pill was supposed to be my miracle drug.  The drug that was going to make me feel normal, and vibrant, and symptom-free.

So now what?  Go through the process of deciding on another new medication, completing all the preliminary tests, figuring out if I have financial coverage? 

And the side effects - no thanks...

I can't be out of commission while attempting to parent two boys.

The temptation to go back on Copaxone is pretty strong right now.  It's familiar and did its job (sort of).

I did just find out I have full coverage for Lemtrada infusion treatments, which is something my Neurologist wants me to consider.  But this mega-drug is scary, and I am not sure if I am psychologically ready for it.

That's where things stand for now.  I see my Neurologist in 10 days to discuss/debate/run for the hills...!

Today we're going to learn about the ER...

I heard back from the nurse today (who spoke to a Neurologist familiar with Gilenya) about the chest pain and pressure I've been having since starting the medication.

Since the pains have been getting stronger, they sent me to the ER.

This little one had to come too.

Talk about a 3 hour lesson in medicine.  This guy sat beside me (and on top of me) while I had numerous blood tests, ECGs, and was hooked up to everything imaginable.

He also charmed the pants off the doctors and nurses and left known as "The Big Mr. O."

(That is, when he wasn't throwing his stuff around and threatening to "press all the buttons on the machines.")

Mommy - I see blood!  BLOOD!  Why Mommy, why is there blood?

The tests were all normal, but since the reactions from the medication could be completely random, I have a Holter heart monitor to wear at home for 24 hours.  It's like a portable ECG.  And a diary to record my symptoms.

Mommy - are those LASERS?!

I am still having chest pains and shortness of breath.  And who knows if this monitoring will actually show anything.

For now - I hope to never spend time alone in an ER with a chatty 3 year old again!

Mommy-school

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.

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. 

Crazy.

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.

 

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...

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.

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.

 

 

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.

Great.

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.

Time to get started

Back from vacation, and back to work.

And by work, I mean - getting ready for my medication switch.  Months in the making, hours of research and appointments - it has felt consuming.

It all starts tomorrow. 

My preliminary tests on my heart and eyes, plus blood work. 

If all that is fine, I will fill my new prescription (pills!...eeeee!) and then go in for a first-dose hospital observation as soon as possible. 

Gilenya can cause heart issues in the first few months, especially with the first dose, hence the day of hospital monitoring.  It is expected that my heart rate will drop dramatically.  This visit ensures I am in a proper medical facility if it drops, well, too much.  This is a temporary change, and over the course of a month or so, should revert to normal.

This, plus liver function, and complete blood count tests will be a monthly occurrence while I am on this drug.  But that's the same as almost all MS medications, so nothing new.

My lymphocytes - a type of white blood cell in my immune system - will be mostly removed from my blood by Gilenya.  That's the mechanism of this more-powerful drug.  So if I don't go out too much at first, or am always slathered in hand sanitizer, that's why.

Gilenya also increases the chances of macular edema occurring.  I will be closely monitored by my neuro-ophthalmologist (luckily - at the same clinic) to watch for this.

I've had to stop taking my anti-depressants, as they are contraindicated with Gilenya (potential heart issues).  I have been through a few anti-depressants over the past years, and this one seemed to work well, even with a very low dose.  Whether or not it gets replaced with something else is yet to be decided.

One thing at a time, Sarah...

Despite these new anxieties, I am so excited that I only have a couple shots left to finish (I could have finished them yesterday, but why throw away very expensive meds?!).

Today, I am grateful:

I don't have a lock box in my fridge for my needles anymore!

I can throw away my sharps bins!

I have an excellent health care team making this process work so well.

We are going to the mall to buy special popcorn!

Nostalgia

One week down, one week to go.

And almost completely unplugged.  No TV, no internet - just my smart phone and a little bit of data.  And two kids for entertainment.

It feels nice. 

As does visiting all the local wineries.

And it's really taking me back about 25 years.  I feel grateful.  So very grateful. 

This little house, on Skaha Lake in Penticton, that my great-Grandfather built, has served 5 generations of summering McShanes well.

More than anything it makes me miss coming here with my Nanny.

This place became her home.  Her soul.

She renovated the 1960s (and the weird brown carpet) out of it.

I love that the "little bathroom" still has a matching pink toilet and shower set.

She loved shopping, cooking the best meal, swimming out to the raft, and always, ALWAYS welcomed us to come up all summer, every summer.

Now - this place - where all my childhood summers happened - is one where my boys can make memories.

Thank you, Nanny, for putting so much love into this house.

And thank you, Grandad, for enjoying AC enough to install 2 units.  For finding the best places to eat in town, and for putting up with our antics.

I love it here.  My family loves it here.  It'll always be our second home.

 

 

 

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!

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.

Insurance

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.

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?

MS fast fact - Vertigo

It's been a very MS-y week.

With incredible vertigo now being added to my list of symptoms.

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Dizziness is a common symptom of MS.  Personally, I feel off balance and lightheaded pretty much every day.  Less often, people with MS can have the sensation that they or their surroundings are spinning  - a condition known as vertigo. These symptoms are due to lesions in the areas of the brain that coordinate and maintain equilibrium.

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I hardy made it out of bed this morning, and ended up crumpled in a heap on the bathroom floor.  I've been in bed ever since, trying not to move my head at all.

Even with a 2 hour nap, it still feels like I am permanently spinning.  Barf...

My giant baking bowl has been holding guard just in case I need to use it.

I am not sure if anything can be done - I've heard some people with MS can take a short course of steroids or anti-motion sickness medication.  I put in a call to the nurse anyway.

I guess this means I have no choice but to sleep away the weekend... right boys?

When style takes a backseat...

I've written about the effects of heat on MS before.  My post from last summer explains all the sweaty details here.

Tis the season again.  It's not actually that hot outside, but townhouse living makes the heat stand still.  It sinks right in.  I have that unwanted sticky-glisten all day long.

The usual tricks aren't working.  The blinds are closed during the hottest times, the windows are cracked and the rooftop deck door is open and screened to create a breeze.  The clunky old portable AC is about to make an appearance too.

This year, I have thrown caution (and all fashion sense) to the wind. 

I bought a cooling neck tie.

Yes, you read that correctly.  It looks sort of like a boy scout neck tie, but with cooling gel beads inside.  There actually is a market for these things, as you can see:

This one is from REI in the US (which is like our MEC) but there are lots of specialty online retailers for these babies, as well as all sorts of even-more-fashionable cooling gear.

I've yet to decide if this will be an at-home accessory, or if I'll venture out in it...

But, ahhh - bliss!

MS fast fact - Lhermitte's sign

This is the name given to an electric shock-like sensation that occurs when flexing or moving the neck. This sensation radiates down the spine, sometimes into the trunk, legs, and arms.

At some point, about one third of individuals with MS will experience Lhermitte’s sign.  Lhermitte’s sign was named after Jacques Jean Lhermitte, the French neurologist who first characterized it.

It is a classic symptom of cervical spinal cord lesions.

----

I felt this for the first time about a month ago, when I flexed my neck downwards.  Then again this past weekend during a marathon fight with the Rainbow Loom.  (Age 7 and up?  Pfftt!  I swear it's the most complicated blasted piece of plastic I've ever encountered).

It does feel like an electric shock, but it also feels like intense heat.  The heat spread right down my back, like I was on fire.  I was grabbing at my shirt, asking everyone to check because something must be on me. 

Nope.  Just that darn cervical spinal cord.

(And... the Rainbow Looming is coming along a little better now)

A spewing of thoughts

Seems as though I had a bit of a blog-sabbatical.

Maybe it's because my brain needed a break from thinking about MS and huge medication decisions.  I think I spent a good week purely researching my two main drug contenders. 

I still haven't heard back from my extended health plan about whether they'd cover the cost of Lemtrada treatment.  Three weeks in, and I have a sneaking suspicion the answer is no.

Or maybe it's because there's been a lot of me-against-the-boys happening.  They are at that still-cute, but getting more aggressive with each other age.  They become these tantruming, antagonistic creatures who can turn anything into a kid-style-debate.  Even deciding on some blasted vitamins.

And questions.  So many questions.  While I teeter above a public toilet seat, Oliver sneaks a peek, announces, yet ponders, "Why Mommies don't have penises?"  

Oh, I am tired!...

It also doesn't help that I am 3 days into loss of sensation in the fingers of my left hand. 

These blips don't really faze me much anymore.  It's bothersome, uncomfortable, and does interfere with life to a degree, but it's so easy to just shrug my shoulders and accept it.  And, by "accept it," I mean live in a constant state of waiting to see what's going to go wrong next. 

Not healthy, I know.  But that seems to be how things have been going with this MS malarkey.

But, we still need to laugh.  And who'd have thought I'd have so much in common with Lois...

Show some love!

Today is World MS Day.

If you know someone with MS, go give them a hug, write them an email, or make a call.  Let them know you are thinking of them today.

It's all about having love and support.

To all those I know with MS - thank you for advocating, sharing your stories, and helping me navigate through this.

And to those who support me - the hugest thank you possible.

This medication thing...

We had 6 months to think, assess, and figure out the next course of treatment to consider.

My brain MRI results indicated no change, but my spinal symptoms have been brewing, and have become daily, and worsening, reminders that things are not okay.

Six months ago, the last time I saw my Neurologist, the only treatment option to progress to was Gilenya, an oral medication.  An upgrade from my daily injections, and with proven potency, but with nasty side effects involving the heart and eyes. 

I have literally spent 6 months researching, thinking, and trying to make some sort of coherent decision.  I was this close to just accepting Gilenya as my fate.

After my physical neurological exam today, I was told even that is no longer normal.  I am now exhibiting some classic reflex and sensation signs. 

The Hoffman sign occurs when the middle finger is bent back and flicked (while I don't look), and the thumb and index finger jerk instead of remaining still.   In MS, when there is weakness and spasticity in a limb, the reflexes will be increased and a pathological reflex will be present.  If there is ataxia in a limb, the reflexes may be decreased. Thus, the relative presence or absence of reflexes serve as confirmatory signs to document a lesion in the spinal cord, brain stem-cerebellum, or cerebrum.  My reflexes were wild and uncontrolled.  Not normal at all. 

I also couldn't balance on two feet with my eyes closed.  I fall to the left.  And I couldn't perform the "drunk walk" (walk in a straight line, heel to toe, heel to toe) without needing assistance.

Add that to the never-changing spinal symptoms, and it was decided to put in an application to see if my extended health plan will cover the cost of Lemtrada (alemtuzumab). 

Lemtrada is an IV infusion drug administered only two times.  When starting it is administered daily for 5 days, then one year later for 3 days.  Then, potentially, nothing ever again.

Doesn't that sound nice?

But, as with all potent drugs, come the side effects.  Lemtrada is essentially a drug usually used for Leukemia, but adapted for MS.  It is an immune "reboot" so to speak.  It kills off certain parts of your immune system, and it is left to readapt, hopefully without the auto-immune disease properties of MS. 

The side effects are many.  Life altering ITP (lowered platelets, meaning the blood cannot clot), kidney disease, and thyroid disorders.

And monthly blood and urine tests for FOUR YEARS after the treatment stops.  Essentially making that 5 years.  Holy smokes.

There is no messing around with Lemtrada, but when it works, it works.  People report feeling "normal" again. 

It literally has just been approved by Health Canada, and only 36 people in BC have been treated with Lemtrada in clinical trials (more since it's Health Canada approval)

But, you know, for some reason, I am not feeling overwhelmed or scared.  For the first time in the almost-2-years since my diagnosis, I am seeing the massive advances into medication research, and I feel genuine hope.

First step:  the paperwork from my Neurologist to see if the treatment will be covered.  If yes - I'll most likely do it.  If not:  we reassess (again).  There are still months to go in this process.

And we wait, with bated breath.

Remembering

It's been 12 years since the loss of one of the most important people in my life.

Today marks the anniversary of his passing.

Of course there are still tears, still huge outpourings of memories.  But, the years are easier, and this day is easier.  Life does go on.

Each year I try to do something to remember him.  Sometimes I go to the tree planted for him, and simply sit and remember.  One year, my sister Erin and I went out an enjoyed a nice glass of his favourite red wine in his honour.  Sometimes I wear his old lapel pin.

Today is about some of Robin's favourite things.  In his honour - I will blast Jeff Buckley as loud as I can, I will eat a huge Oh Henry bar, and yes, I will enjoy some wine.  Most of all, though - I will smile through some happy tears, and be so grateful I had him in my life.

The reflections Erin and I wrote for his memorial are perhaps more poignant all these years later:

"...and the things we miss now are closer than we think.  They are inside of us.  And when we do something kind, laugh at a corny line, read a good book, or open a bottle of red wine - we are continuing him."

We love you, Robin,  And still think about you every day.

World MS Day

World MS Day is on May 28th.

The Multiple Sclerosis International Federation, based in London, which documents, supports, and brings awareness to MS world wide, has chosen me to be part of their "One day" campaign to promote MS initiatives.

All of the MS ambassadors (which seems to be the coined term) had to choose our one wish for our lives with MS, plus discuss this year's theme of "access," and how it affects our lives personally.

It will be very interesting to see the global differences in terms of access to healthcare, medication, and treatment.  I am very, very aware of how lucky I am to live in Canada.

The "One day" pre-launch website has gone live, and if you wait for all 21 people to be featured, you can see my "One day" wish.  On May 28th, the full site will be unveiled and all the MS ambassadors from around the world will be featured with their wishes, plus issues surrounding MS and access.

Click here to see the World MS Day website.

It is such an honour to be included as a "MS One Day" representative from Canada!

 

 

MRI update

I finally received a copy of my brain MRI from the Radiology department.  Here's their (a little too concise) summary:

----

Type:  MRI Brain

Indication:  Relapsing Remitting MS on Copaxone.  Still having relapses.

Comparison:  May 2013

Findings:  Several juxtacortical, deep white matter, and periventricular hyperintensities (lesions) are noted consistent with known diagnosis of multiple sclerosis.  No infratentorial disease identified.  No new lesions seen.  Brain volume is normal for age.

Impression:  Stable diseased.

---

That's me - stable diseased.

I am happy there are no new brain lesions.

But this was expected.  My brain MRIs have always been stable, whereas changes in imaging and increases in symptoms are from my large spinal cord lesion.

It is odd that I never have both brain and spinal cord imaging done at the same time, to assess physical symptoms and medication effectiveness concurrently.  I suppose it is the schedule I stumbled upon during the diagnostic process, and now it's just stuck.

And as the boys and I returned from school, plus a long, sweaty playground visit, my Neurologist called.  (I hope he didn't hear the rowdy screams in the background...).  Even though there was nothing of note to mention from this MRI, I was impressed to receive a live call from him.  No assistant staff, no residents, no leaving message after message for a nurse.  He wanted to go over my MRI and see how I was doing. 

It's nice to feel like a human patient.

My appointment with him is in 10 days, so then we chat about a medication switch - and whether that possibility still exists.

MS Moms

Before an MS diagnosis, many women just assume the exhaustion, brain fog, and clumsiness is just part of being a Mom.  Mommy-brain.

It goes on for years. 

Then starts to include other symptoms.

And usually gets bad enough that a diagnosis is made.

I find it so ironic that the scars of Motherhood overlap so greatly with those of MS.  Yet, with added irony - one of the largest groups of people with MS are young Mothers.  They are the "typical" person with MS.

And I think it's harder for Moms to focus on their own health.  Their own well-being, and daily happiness.  Simply put - it's not easy to overlook those small faces of yours; to not put them first.  I think all Moms struggle with this, living with a disease or not.

On this Mother's day weekend, I am going to appreciate all the Moms I know.  With MS.  Without.  Those with a smile on their face, and those fighting a battle they didn't ever think they could conquer.

If you are on Twitter, let's get some action for #MSMoms.

And check around your neighbourhood to support the MS Society's Carnation Campaign.  I love that it happens on Mother's Day weekend.

Elusive sleep

MRI day has arrived. 

I have to be up in about 5 hours.  And of course, cannot sleep.  I've tried all of my tricks - prescription and otherwise.

You know that feeling where your brain just won't shut off?  That gets amplified and everything becomes an issue. 

My pillow feels funny - Did someone move my perfect pillow?  It feels "wrong."  I'm hungry.  And it's way too hot in here.

This is probably the process that has become the most unfamiliar to me.  I still get so anxious.  Brain and spinal cord MRIs so often I've lost count.  Maybe 6 in the past year and a half?  Getting fried (figuratively, of course) for an hour so early in the morning is just so wrong.

Digression aside, fingers crossed for no changes in my brain, and most importantly - some sleep!

(or maybe a nap tomorrow.... anyone want to take my kid?)

 

 

 

Walk day!

Today was the most perfect day for the Vancouver MS Walk.

And over $125,000 was raised for the MS Society.  That is amazing!

Team Making Lemonade was first out of the gate for our 3km walk around beautiful Stanley Park:

A giant thank you to everyone who joined us in the sun today.  It was wonderful to see so many happy, supportive faces.  Your presence (and tacky yellow) means so much to me.

And to everyone who donated to Team Making Lemonade - we couldn't have done this without you.  Together, we raised $5000 for the MS Society.  Thank you!

Finally, thank you to the MS Society for asking me to come on board as an MS Ambassador for the BC and Yukon Division.  What a dream for me.

I truly am humbled by everything that happened today.  Thank you everyone.

One week to go!

Who knew I had such skills as a broken record...

The MS Walk is in one week, and I haven't stopped my fundraising efforts yet.

Let me tell you why this is so important to me. 

Helping the MS Society raise money gives me hope for my future.  It helps me feel more at ease with what is happening to my body every day (even when I can't feel my leg or arm, or my brain gets muddled, or I can't see properly, or I lose my balance and fall).  It helps me worry less about medication costs (about $50,000 a year).  And it helps me tame my how-much-worse-is-this-going-to-get thoughts.

It makes me hopeful that this disease will one day have a cure.

And I do feel hopeful.  Very much so.

Events like this walk help create that feeling.  Being surrounded by people who love and support you, even if you don't see them every day, means more than anything in this world.

One week until Making Lemonade breaks out all that yellow stuff...

If you'd like to make a donation, click here.

Thank you for your support!

Lipoatrophy

The dreaded skin condition highly associated with Copaxone injections, that some people will develop.  Looks like I am one of the lucky.

Lipoatrophy is the term describing the permanent localized loss of fat tissue. It occurs as a result of subcutaneous injections, and with Copaxone can include a skin colour change (I don't even know how to describe it.... sort of gray-ish), as well as denting of the skin at the injection sites.  Kind of like cellulite, but not.  So odd.

I am religious about rotating my injection sites, but doing this every day means the skin does get damaged with time.

The last time I saw my Neurologist, he wanted me to switch to a stronger oral medication called Gilenya.  With the continuous nature of my disease activity, he thought this was the best course.  But the increased monitoring, plus potentially very dangerous side effects, had me pleading for 6 more months of Copaxone injections.

I am thinking perhaps it is now time to re-evaluate the switch to something stronger, and without daily injections.  The little vanity I have left is not enjoying dented skin.  My next MRI (just brain, not spinal cord) is in April, then early May to see the Neurologist.

Until then - the Copaxone stays, and I get creative with new injection sites.

They made lemonade too!

Literally.

My boys, along with my Mom and Sister, had a lemonade stand today. 

They drove up to a busy intersection by my Mom's house, near lots of shopping, and did their thing.  They went through 4 pitchers - and sold out- of lemonade!

They said they wanted to donate their profits to our MS walk team (after allocating for toys, of course).  As if I need more I'm-so-proud-of-these-guys tears.  They did this to help support me.  And they are only 6 and 3.

Apparently Jack is quite the salesman... "Fresh lemonade, get your fresh lemonade, only 10 cents a glass!" (They should have charged more, I think).  "Not too cold, but just right!"

That's what I call "Making Lemonade" at it's finest!

Great Wolf Lodge

We needed a vacation.

As much as I would have liked, not the sitting-on-a-beach-with-an-umbrella-drink kind.

This had to be something for the boys.  They needed to go crazy, release some energy, and just have lots of fun.  Pretty simple.

I find I prioritize their fun more now.  The importance of it, and the increased opportunity for it.

So we packed up (with lots of junky bribes and electronic gadgets) for the 5 hours of border waits, snack stops, and driving, to get to Great Wolf Lodge in Washington State.  It's about an hour south of Seattle.

The place is a giant indoor kid's dream.  Huge water park (that is 84 degrees all year long), MagiQuest game (a magic searching quest that takes you exploring through the resort), lots of shops (gifts, kids stuff, and swim apparel),  an arcade, glow in the dark golf, lots of restaurants and ice cream, a kid's spa (and a grown-up one too) and even an on-site Starbucks. 

Kids gone wild...

Parents are left searching for resort booze.  (yes, there is a bar - it's in the pool area).  But rooms have a fridge and microwave, so you can bring your necessary evils along.

The rooms come wolf-themed, of course.  Ours had a wolf den area for the kids with bunk beds and their own little space.  It was pretty cool.

We started each day first in line for the water park (9am) because it does get really busy.  Before 10:30 there aren't long lines for the slides, so much more fun.

For meals, you don't have to leave the resort - 2 big restaurants with kid-friendly menus, plus a take-out pizza place (that was actually good), and snacks from many of the various shops and smaller restaurants.  And did I mention Starbucks?  Cause you'll need the coffee. 

There are also other kid-friendly activities throughout the day - meeting the Great Wolf Lodge characters, balloon twisting, making your own stuffie, glitter tattoos, nightly story time by the big fireplace.

My boys had a blast - they both loved the water park.  There are activities for kids of all ages and all levels of adventurousness.  Jack even tried the famous Howlin' Tornado - the water slide that plummets you through the dark, down into a 6-story tall funnel, where you slosh and slide all the way down into the pool.  Crazy!

If you are looking for a couple nights away, this place was great.  Parents will be weary-eyed and in need of a long nap, but that look on your kids faces makes it all worth it.

Reminder days

They suck.

Those days where you have constant reminders that part of you is sick.  Wrong.  Off.

It's been bad lately, but the last few days have been possibly the worst reminders of my lingering symptoms.  The numbness in my left foot is expanding, my toes hurt when I walk.  My right side - arm and leg - get weaker.  The fatigue is incredible.  My brain has that mushy impossible-to-concentrate sensation.

I hate that I am at the stage where I have permanent damage from this.

And it gets worse after busy, stressful days.  Parenting with an illness (or injury), in my opinion, is the hardest thing one can face.  Balancing on that invisible line of weighing your own needs against those of your children.  Those little creatures you want to put first.

But I have a lot to be happy for.  And I try to think about that every single day.  Cliché, I know.  But it helps a lot.

Jack, in grade 1, had his report card yesterday.  He's my "cheerful, friendly student who always shows a sense of humour."  He is not a serious, reserved student, or a quiet kid.  And I love that about him.  I love his silly antics that can crack the hardest of demeanours.  And I am thankful that I ended up with a son like that.  Somedays I really need him - just for that extra laugh.

The overly-proud, crazy-hugging-Mom came out yesterday, prompting him to instruct: "I know you are so proud of me, but please don't cry at the playground."

Gotta love that!

Thank you!

I owe a lot of thanks to everyone who has helped me fundraise for the MS Walk so far.  You've endured a lot of (somewhat) dignified begging and pleading.  You've seen it on repeat through all my social media channels. 

Today I reached $1000!

And I owe it all to generous donations from:

Barb
Brian and Nicole
Caitlin
Dave and Lorraine
Dorothy and Phil
Emily
Finn and Dylan
Heliya
Jack and Oliver
Larry
Laurie
Lily
Mel and Dave
Nicole
Pam and Eli
Patricia
Stephen
Tanya
The McShane family
The Meades family
The Sangan family

Thank you for sharing your hard-earned money to help the lives of thousands of people.  Thank you for supporting a cause so important to me, and for seeing the necessity of such events.

This makes me smile.  A lot.

Yellow!

And lots of it!

What I perhaps lack in fundraising prowess, I will make up for in all my yellow glory.  I think team Making Lemonade will be "best dressed" again this year.

The fun we have on walk-day is incredible.  Simply because of our own self-induced costume-craziness.

Thank you, Hema - who is braving life with a brand new baby (and 4 year old!) -  for selflessly offering to fabric shop with the I-can't-sew-a-button-on me, and for making me a wondrous yellow creation.

Tulle.  Lots and lots of yellow tulle...

Funny lemons?

Lemons seem to have become my thing.  Funny (or corny) lemons are even better:

"Why did the lemon disapprove of his daughter?
Because she was a little tart!"

 

(maybe close your screen before the kids see that last one.  Lots of questions...)

Last one:  The dark side of a Lemon Drop...

What did the lemon say to the lime?

Sour you doing?

Read more at http://www.top10-best.com/l/top_10_best_lemon_jokes.html#HjSFdiFzl5BVwPML.99

Why did the lemon disapprove of his daughter?

Because she was a little tart!

Read more at http://www.top10-best.com/l/top_10_best_lemon_jokes.html#HjSFdiFzl5BVwPML.99

What did the lemon say to the lime?

Sour you doing?

Read more at http://www.top10-best.com/l/top_10_best_lemon_jokes.html#HjSFdiFzl5BVwPML.99

MS fiction

There are a lot of MS myths and misconceptions out there. 

And because it is such an individualized disease, a lot of these myths get over-exaggerated to the point of Well, my friend's sister's sister's daughter has MS and she needs a wheelchair.  So, you must too.

Not necessarily true.

I hear things like this all the time.  In person, by phone, email, and social media.  It's frustrating.

Here's a good list of common myths associated with MS.  Some of them more true than others.

For me, there is zero family history of MS, or even anything auto-immune. 

I like this article because it touches on pregnancy and breast-feeding with MS, which has been a huge fear and unknown for a lot of people.  But I also want to mention a few other common myths.  MS is not contagious.  There are different types of MS.  You don't get MS because you are unhealthy or inactive.  There is no control over it.  MS is not the same as Parkinson's Disease or ALS (Lou Gehrig's Disease), even though there can be similar or overlapping symptoms.

I am not surprised that MS is on the rise.  And it is interesting that the relative percentage of women with MS, compared to men, is rising to levels never seen before.  That touches on, and perhaps credits, the involvement of hormonal factors.

Generally, because of earlier diagnosis, better healthcare, and better treatment plans, MS no longer holds the same connotations it did decades ago.

Ouch!

A few weeks ago I did something to my back.  No fall, no injury.  It just appeared.

I endured through the pain, trying everything under the sun to fix it.  Muscle relaxants, pain medications, hot packs, cold packs, stretches, DIY-massages.  It was finally starting to feel better.

Yesterday it was so bad I could hardly move.  Worse than labour - both times added together.

Plus my usual MS symptoms started to flair up again in my hand and foot.  Was this a relapse?  Back pain for mobile MS patients is usually not an issue, but I wondered if this wasn't just a huge auto-immune reaction, back now included.

I went to the ER in so much pain I really just wanted a shot (or two) of something right there and then.  I would have done it myself.

They thought it could be kidney stones, or perhaps new symptoms related to the transverse myelitis aspect of my MS (spinal lesions).

X-rays and kidney tests later, it's decided I have sprained my sacro-iliac joint.

And it was the fastest visit to VGH ever - thank you, pre-existing disease.

A bunch of meds and four days of bed rest to start. 

Wish me luck staying put...