Tuesday, 7 January 2020

Definitions

It's really surreal to read a description of your disease and symptoms - written by someone else.

In this case, my doctor has described my MS.

Even when you know what MS entails; the odds and stats. When you see it on a piece of paper right in front of your own eyes, you still have to wonder Is this really about me?

Yes, it is.

Permanently disabled.  Condition will deteriorate.  

Deteriorate.

That word is stuck in my head.  You mean it's going to get worse?  Yes, most likely.

And that means even more changes, more lifestyle adaptions, more assistance, more help.

And yes, the past few months have been much more difficult.  I've been having problems walking for two months.  My role as a "professional patient" has been expanded so much more because of that - trying to figure out whats going on.  Trying new medications.  Seeing different types of doctors.  This on top of my usual fatigue, imbalance, vertigo, and reduced ability to do more and more things.

Every day I drag myself somewhere, to some appointment.  In so much pain.  Just hoping it gets better.

And then I see that word again - deteriorating.

And I know it. It's been 10 years since my symptoms started.  It's the expected time to deteriorate.

But I'm not giving up. 

Yes, I have more pain now.  Yes, I can hardly stand still without losing my balance or wobbling over.  I need to sleep more than a toddler.  BUT -  I am starting some adaptive training this week, and am so excited.  Abs of steel, here I come (ha!).

And despite the new word stuck in my brain, I still have a word I focus on more.  The one word I couldn't live without.






Tuesday, 22 October 2019

Three years

Three whole years.

It's unbelievable.

I remember every detail of that moment.  The weather, the room, what I was wearing, who was there.

My heart broke.

And it hasn't healed.

You are missed more than anything, and remembered every second of every day.

I talk a lot about you.  Especially to the boys.  To keep your stories and memories alive.  They always say to me "don't cry, Mom."  But I do, and tell them its okay to cry.  And sometimes they do too.

I know you are with us.  I can feel it.  I know you help me get better when I am really sick.  I know you are out there in the universe.  When a hungry hummingbird comes to our feeder, I know.  When a flash of memory hits me out of nowhere, I know.

I wish I could go back 20 years and tell you how much you taught me and how much I always needed you.

I work hard to continue your legacy.  Your values and goals.  And I'm proud of that.

So today, I'll take a quiet walk through your favourite woods and I'll raise a glass to toast you.  The greatest, strongest woman I have ever known.

And I'll find another story of you to tell the boys.  Your grandsons.  They miss you so.

O will be 9 tomorrow.  The day after you passed is the day he begins a new year.  How lucky he is.  The cycle of life continues.  And both boys are here, learning from you still, and showing the world who you were.

We miss you Mom.  So much.


Friday, 11 October 2019

Unplanned thoughts

Last weekend was the MS Connect conference, at which I was able to present my story of living well with MS.

I had written in my calendar to recap that conference through a blog post this week.

Big change of plans.

I'm not sure what has happened, but that is the nature of this disease.  We never know what, or when anything will happen.  That's the hardest part.

I have been mostly sleeping for 2 days now.  Headaches so bad nothing is even touching the pain. And now a consistent sharp banding pain around my chest, known as the "MS Hug."  Imagine the feeling of getting the wind knocked out of you, add in consistent intolerable pain, and have it last for days - that's my variety of the MS hug.

So I'm sorry this isn't a conference recap.  Because there was some incredible information and advances I'd love to share.  But I need to take of me right now.

I'm not writing this so you'll feel sorry for me.  I'm writing it because this is my personal therapy.  And because living with it can be so hard.  I need to keep creating MS awareness and knowledge - of the struggles, the symptoms, the experience. The message still hasn't been understood by so many.

I feel absolutely awful.  The worst in a long time.  So bad I almost cracked open my Mom's stage 4 cancer morphine from 3 years ago.

If it continues tomorrow I'll assess my hospital options.

Healthcare needs to be a WAY bigger concern in our society.

Thanks for reading and listening.  It does help. 

And as I always promised myself.  And a big part of how I do live well with MS (most of the time) - a joke to end the post...




Thursday, 22 August 2019

Seven years

Seven years since my official diagnosis.

Ten years of living with this disease.  Living with fear and uncertainty.  Learning to navigate things I never expected to.  Learning to embrace the "new" me.

It's been a process. Many medications, some terrifying and debilitating.  Many treatments and appointments and trying anything that might make things better.

There still is no cure for MS, nor a definite cause.

There is no warning when your body will turn against you.

It's taken me a decade, and I am now okay with having MS.  And it does partly define who I am.  Probably because I think it's made me a stronger person.  I am comfortable with my own mortality and my own illness.

At my last Neurologist's appointment, we discussed that because I am over the 10 year mark of living with this disease, we wait and see how my MS transitions.  10-15 years post-onset is typically when 50% of people decline greatly and become secondary progressive, while 90% of people with MS will transition to secondary progressive within 25 years. This waiting will perhaps be the hardest.

For those who have stuck with me - thank you.  Support is the only way to navigate through a progressive disease.

And the MS community as a whole has been an amazing asset to me.  I have never seen a group of people rally together with such power.  Ever.

And on that note, coincidentally, today is A&W's Burgers to Beat MS day.  For every Teen burger sold, $2 goes directly to the MS Society of Canada.  This is a huge fundraiser which supports the research, resources, and equipment that thousands of people really need.

So go eat a burger!



Monday, 27 May 2019

MS Walk

Thank you to those who donated, those who called to wish me well, and to those who showed up!

I couldn't do this without you all.

Team Making Lemonade has now completed seven MS Walks and has raised over $35,000 for the MS Society!  And I can see advancements happening all the time - new medications, new research, new programs for people with MS.  These donations really do help.

I am deeply grateful for the support.

Thank you to the MS Society for asking me to be the Vancouver media spokesperson, to Stephanie Florian from News1130, and to City TV for having me!  I had a blast!




Wednesday, 6 March 2019

The professional patient

"So why don't you work now that both of your kids are in school?"

If I had a dollar every time I heard that...

On top of living with MS, and learning how to get through daily symptoms and interruptions to life (which is a huge thing as it is), it involves so much more.

There are so many appointments. Usually at least 2 a week.  I see my Neurologist at least every 6 months, usually sooner, my neuro-ophthalmologist every 3 months, and there are many brain and spinal cord MRIs. I administer my own injections every day at home (which requires so much prep - heating my skin up before, then cooling it down after.  And until I find another medication I can tolerate, this is for life).  I have my own mini-medical clinic at home!

Then there's the 3-day hospital bouts of IV corticosteroids, the myriad of other doctors I need to see as new issues pop up, plus the cocktail of other medications I need to take to stay on top of things.

Most appointments usually don't bring good news.  Which I understand.  That's the nature of this disease.  But with that also comes the need to be extra vigilant about my mental health. Living with a degenerative disease is a terrifying thing.  I need help with that.  Add in the appointments with my therapist plus medications (yes, I talk freely about that.  No stigma about maintaining mental health).

Today was eye-injection day with my neuro-ophthalmologist, in order to try and control my nystagmus and eye shaking.

But I am so lucky I'm still fully mobile, and for the most part, able to participate in life.  And I am thrilled I get to be an Ambassador for the MS Society of Canada and work with the Peer Support Program, and dedicate so much time volunteering with them.

Needles in eyeballs every three months, you ask?  Plus daily injections and other meds to maintain my health, plus sometimes not being able to stand or balance, or see, or think, or feel sensations.

Plus there's those two kids, and soon-to-be dog! (whom I love dearly)

That's why I can't work.

Rant over!  (Haha)




Friday, 7 December 2018

You win some, you lose some

Another neurological checkup today.

Good news first - the eye nystagmus (when the eye makes fast, repetitive, uncontrolled movements that interfere with vision and depth perception) that has been present for the past year wasn't noticeable at my exam today.  

In the scheme of things, that's pretty small.  But I'll take it!

The bad news - my EDSS (Expanded Disability Status Scale) score continues to get higher and indicates what I already knew.  There is disease progression happening.  And I can just feel it.

The disability scale for people with multiple sclerosis runs from 0-10.  And goes up in 0.5 increments.  I am now classified as having mild disability in two functional systems, but still have the ability to walk.  There are 8 functional systems - pyramidal, visual, cognitive, spatial, brain-stem, sensory, bowel/bladder and cerebellar. I'm about a 2.5, varying by the day.





I'm not going to change medications again, as it's been a difficult year because of that.  But my neurologist and I are always reassessing.  Shout out to Dr. T.

Meanwhile, I'm going to add a third volunteer role to my life.  It's a study through the MS Clinic and is called "Establishing an Imaging Biomarker for Disease Progression in Multiple Sclerosis."

I enjoy volunteering - the ambassador work, the peer support.  And if imaging my brain, performing neurological and cognitive tests and poking and prodding will help the future direction of MS, of course I have to do it.