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)