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!

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!

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)

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.

Remembering heartbreak

We sat next to her hospice bed, watching her last few breaths.

Holding her hands and stroking her hair.  Our eyes filled with tears.

Talking to her, despite days of unconsciousness. Telling her how much she was loved.

Comforting her; telling her it was okay to go.

It was time, and her pain needed to end.

----

Today and tomorrow are the most emotionally conflicting days for me.  The most intense pain I have ever felt, and then a glimmer of happiness.

October 22 was the day my Mom died.

October 23 was the day my youngest was born. He was turning six that year.

It's been two years since my Mom died.  The most surreal day I could ever imagine.  It truly feels as raw as the day it happened.  She passed away shortly after I arrived at the hospice, my sister and I with her.

She waited.

She waited for the three of us to be together in her room.  And she made sure it happened before my son's birthday.  Despite her unconscious state, she knew.

It had been a short but intense illness, and we knew her hospice stay wouldn't be long.

But I still can't believe she's not here.

Now, after the wounds are a bit older, I can celebrate these two important people together. I can think of my Mom, and honour her by doing her favourite things on this day, then I can celebrate my little man tomorrow, and know that my heart bursts with love for him.

An inverse few days, emotionally, but definitely filled with so much love.

We never stop learning about love and loss.

I'll never stop missing my Mom.

And I'll never feel fully complete without her.

Yoga

I started practicing yoga decades ago.

I loved it. 

It was all kinds - Hatha, Yin, Kundalini, Meditative.  I even threw some Pilates in there.  Each with its distinct benefits.

I stopped as life got busier and my MS made my balance really bad.

Some days I teeter around for no reason, other than my brain and spinal cord attacking my body.  There was not going to be any one-leg balancing, as I used to do.

But thanks to some gentle pushing from my sister, I have started again.

I don't need an adaptive class, as I am still mostly able, and thankfully am familiar with the types of poses done in each type of class, so am able to foresee what each class will involve. 

I am back in yin yoga (where you hold the poses for extended periods of time). 

It started today and I feel excited and refreshed.  My body knew exactly what to do.  And I could do it for hours.  As if I had never stopped. 

I feel good.  Thank you Vayusha Yoga Studio.

Crappy balance aside, I'm feeling pretty proud of myself!

Summer updates

It's been a summer full of change.

Big changes for us all.

We moved to a new house in a new neighbourhood and have spent the time settling in.  It's so nice to have the extra space for the boys and a huge yard for a beautiful garden.  I am grateful for that.

My Ocrevus infusion back in January has officially been deemed unsuccessful, so I was left with the decision of which medication to go on next.  There are only a few options left. The one that is brand new and shows a lot of promise is another mega-drug which obliterates the immune system.  Similar to the infusion I had.  It terrifies me.

It's hard to make this decision. The mega-drugs don't seem to agree with my body.  I felt horrible for 6 months after the infusion until it started to wear off.  And I had pinned all my hopes on it.  It was going to make me feel better.

But it didn't.

In fact it made things physically worse, and my MRI showed new disease activity too, including my brain stem.

So, after a summer of no medications, today I finally conceded and filled my prescription to go back on my daily injections (again).  They are ruining my skin and aren't strong enough for my MS, but right now I need something I can live with that doesn't leave me in bed for weeks.

I'd give anything to make it a pill or an infusion, but alas, not meant to be right now.

It's such a Catch 22.

And to be honest, I don't know if this is the right decision.  But it's a decision, and I needed to make one. The proverbial band-aid had to be ripped off, and today was the day.

And now we move forward.  With fingers crossed.