Amy Volume Amy Volume

It’s Ontario Budget Day - some thoughts from my physically disabled self.

I've been gainfully employed, for the most part, since I could legally have a job. I have also been a recipient of ODSP (Ontario Disability Support Program) which really helped me leading up to and during my college years (full time student + intern + worked 2 p/t jobs: the college + the ottawa police).
I have been working full time in my field (radio) since college. ODSP stops when you no longer 'need' it. While earning with part time work, your financial subsidy is heavily reduced which was never my issue. I was earning money, why should Ontarians continue giving me theirs through ODSP when I am able to work? What came in CLUTCH, however, was the drug coverage as the meds I take cost around $2k per month. The drugs I take make it so I can walk and maintain bodily autonomy.

Post college (2011), I started working in my field (radio) straight away and haven’t looked back. When you start a full time career, you typically exit the ODSP support system. Now I’m summarizing here and can only share my personal experience; this is not a one-size-fits-all situation and I want you to keep that in mind. While employed full time I’ve been covered through private insurance and yeah…. sometimes I’ve had to ‘jump through hoops’ with my medical team to keep the drug coverage going (prior-auth. approvals, tests, failing other meds), but it’s been critical to my success as a working Ontarian who contributes to this great province of ours. I pay taxes (lots and lots of taxes). I help my community. I believe in this country and have hope for a brighter future, so please don’t misconstrue my intentions as ‘whining’. I am simply hoping to convey a bigger picture.

This fall my private insurance company will no longer cover my medicine. Medicine I was a ‘child test patient’ for at CHEO many, many years ago. I’ve been on Enbrel for 22 years. Medicine that has been keeping me pain-free. Mobile. Able bodied (enough) to contribute in a meaningful way to our province. This medicine is being shelved in favour of less-costly bio-similars (which are NOT the same. They are ‘similar’ and when you have a disease like mine, the disease literally attacks anything ‘new’ that is introduced to the body - so this is not to be glossed over and, tbh, I really hate the wording able bodied people use to make it seem like switching meds is ‘no big deal’).

So why, with private insurance, am I being forced off the medicine that allows me to walk? Because all Ontarians (all Canadians, as this is happening coast to coast) are being forced off of these meds to save money. The government/rule makers cannot say ‘drugs for some’ (with pvt ins) while screwing over ODSP recipients who are not able to be gainfully employed due to disability.

Long story short: I’ve been working full time since 2011. I’ve been financially contributing to the province. I want to continue to do that. When I am no longer able to move due to my disease, what happens? Will I lose my job? Will I re-enter the ODSP system? This is a question many of us are grappling with as our drug coverage is ripped out from under us.

Thank you for reading.

Thank you for supporting people like me.

I have hope for the future, thought it’s a little scary sometimes.

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Amy Volume Amy Volume

March Break

Hello,

If anyone needs me, I’ll be at the lake. Hoping to get in some public skating, hiking at Algonquin & maybe even (finally) show the kids the Petawawa Gorges.

I’ve also got a new book to read and am hoping for some quality rest & relaxation by the fire.

When the weather is mild, maybe a bonfire? Nerf battle? A run through the woods? Anything goes.

Until Saturday, I’ll be in my happy place.

TTFN,

Amy

PS: You can rent my cottage for $1,450.00 per week. Available in June & September this season and next.

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Dry feb: done & nearly dusted

Another year doing Dry Feb and I approached it the same as I typically do: with a ‘Let’s see if I can pull this off’ attitude. Well, these past few days I’ve been sick with a virus requiring medicine so I there is zero chance I’ll be drinking today - or tomorrow - or probably for the next several days/weeks. I’m considering that a win!

Did I have some drinks on Family Day Long Weekend? Yes. Of course!

The truth is (for me) that I enjoy social drinking and am in the best shape I have probably ever been in (in my life - thanks to this surgery you may have heard me talk about). This Dry Feb I challenged myself to stop drinking during the week and that, as it turns out, was pretty easy.

Every day is a good day to re-evaluate your dietary/life choices. Just as every day is a good day to check in with yourself physically and mentally. This initiative is predominantly to promote awareness and raise funds for the Canadian Cancer Society.

Over $50 million went towards cancer research through last year’s efforts. In addition to said research, funds also helped over 6,800 people get to their cancer related appointments through Wheels of Hope. To learn more about Dry Feb: Click Here.

That said, I have one day left in February and haven’t reached my fundraising goal. If you feel so inclined, you can donate (and get a tax receipt) by clicking the button below!

Thanks for reading & following my daily adventures.

Amy Volume's Dry Feb Campaign
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Time for Change

Been thinking about it for a while, so today’s the day.

Bye bye, long hair!

My hair was (is) a huge part of my identity. I love having super long locks but it was getting too difficult to manage. I found myself never enjoying wearing it down and it was always getting in my way while exercising, wearing a helmet or getting changed.

I also would often cut knots out, of which there were many - constantly - no matter what products I used or how many times I’d brushed it.

Now that I’m moving into my healthier body and lifestyle, it was definitely time for my hair to follow.

The hair will be donated and if you’re looking for info on how to donate yours, click here:

Hair Donation Ottawa x CHEO
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