Tuesday, 9 December 2014

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...

Monday, 1 December 2014

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


Thursday, 20 November 2014

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.

----

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?

Sunday, 16 November 2014

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.

Sunday, 9 November 2014

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.


 
 
 

Thursday, 23 October 2014

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.










Thursday, 9 October 2014

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.