Life with an Autoimmune Disease
Hi! Just checking in with some of my new followers. I live with Rheumatoid Arthritis and have been sick for 34 years (possibly born sick? Who knows.)
I’ve been on Enbrel (biologic TNF inhibitor) for 20 years which means I’ve given myself around 1,500 needles 💉.
There’s a lot of misconception about RA out there, so in simple terms:
My body’s immune system spends its energy fighting healthy tissue (ALL bodily tissue: organs, joints, bones & blood) - the drugs tell my immune system to “calm down” and stop fighting. Immune system goes away and stops killing healthy cells. This means I do not have a proper defence against viruses or infections of any kind. If I get the common cold, it has the power to totally take over my body. A paper cut, if not treated, can be the welcome wagon to a life altering infection.
Autoimmune diseases are tough and there are many co-morbidities, shortened life expectancies and mental tolls to juggle every day.
If you’d like to learn more about autoimmune diseases or arthritis, please reach out. I’m happy to share my experiences to educate others.
Going Private on Social Media
A week or so ago I decided I’d hit the Social Media Wall. Y’know - where the quality of interactions is on the wane and you spend more time figuring out how to make your accounts so that A: people can’t find you, or B: only a select few can actually message or interact with your profile?
Yeah.
That’s where I was at.
The news is heavy - the year has been grading (at best) - and I was just finding it hard to see the forest through the trees. Especially in terms of online content consumption and investment.
In my line of work, you have to be Open and Willing to Connect with everyone, all the time. That hasn’t changed. Everyone can connect with me, or attempt to, via this Website and on Twitter.
Facebook was the first to go. Yes, I still have a Page which I use from time to time. Generally to spread awareness about something I’m passionate about. I try to keep my Page fairly empty because, in my experience, Facebook is a magnet for negative interactions which I’m no longer interested in tolerating.
Instagram is private for the time being. Maybe I’ll open it up again but maybe not. I think there’s a real crunch to Have the Most Likes and Be the Most Followed and it starts to spiral into obligations and/or heightened expectations from strangers to spread positivity or ‘influence’ others into thinking some type of way. I like to tell the truth and a lot of the time, Social Media expectations don’t really reflect that.
The observations I’ve made in ‘going private’ have been this:
more meaningful conversations or interactions with real people and friends
less spam, bots and targeted ads
seeing more things on my timeline that make me happy or feel engaged
That’s what I want at this time. Take control of your social media profiles and use it in a way that works for you.
Passing the Time.
Life in lockdown: part two? Three? It’s hard to keep track.
Lockdown is set to end May 20th and that’s what I’m hoping for. It’s tough working from home. A privilege, of course, but it’s very hard to focus on performing a quality radio show (which is more than talking here and there; it’s fielding, researching and logging requests, engaging with people on social media and text/no phones from home which means scheduled interviews for upcoming segments need to be done from studio, posting relevant content to social media and staying up on the times). So pull that off while tending to the needs of two children aged four and six.
Our six year old is supposed to be doing online learning but we are taking a hands-off approach to that for the most part. It didn’t work very well for us this time last year so we’re just letting Eve log in when he wants. We’re trying to get some activities done based on what was sent home in his work books but there’s no pressure. Things are stressed enough, schedule-wise (*everything wise).
No daycare. No family relief concerning child-care. No camps. No friend visits. No parks. While parks are allowed now, with the most strict of safety measures/rules in place, I’m a kid magnet. They flock to me and it’s too hard to keep our distance so we avoid it. Playing in the backyard is ok but the kids are mostly resorting to games on their tablets and a lot of Netflix (at least the shows are educational, right?)
We are all very lucky to have tablets and TVs and, above all, our health. The mental health thing needs constant monitoring because emotions can run hot. It’s hard to explain why life is like this right now. It’s hard to not let the kids be iPad zombies. It’s hard to work, be a mom, manage household chores, relationships, food/groceries, bills - monitor this that AND the other thing. Most days I am at my stress limit by lunchtime.
What’s gonna help? I don’t know.
Reading books? Riding bikes? When the warmer weather decides to stay? Healthier food choices? Medicine? Stay on top of your mental and physical health and just hang on as best you can.
My 35th Birthday Wish for CHEO Kids!
My 35th birthday is April 25th and I’m hoping you’ll give a gift to a child in treatment at the Children’s Hospital of Eastern Ontario aka CHEO to help me celebrate. We’ve been doing this since 2018 and my goal for 2021 is to hit $5,000. Will you help?
Please give a gift to a child in treatment at the Children’s Hospital of Eastern Ontario this April.
If you’re in my family or friend circle and you’d typically treat ME for my birthday, the best gift I could receive that really lets me know that you’re thinking of me comes in the form of a financial donation to CHEO’s Child Life department.
All proceeds go to providing a child (ages 0-18) in hospital with a new toy, game, book, art supply kit and other forms of entertainment (escape) while undergoing treatment.
In previous years, you’ve been able to swing by the radio station or a tour, a chat and a photo (sometimes even a hug or a hi-5). Unfortunately, in person donations are postponed until we can all safely gather again.
Here are some photos from my Birthday Wish:
To be totally transparent, this fundraiser is ongoing. I started it in 2018 and promote it every year during my birth month (April). I want to make it as financially accessible as possible for those who wish to give a gift to a child who could use the distraction. In my personal experience as a CHEO Kid (which runs deep; from 1988 to 2003), many children who spend a large amount of time as ‘in patients’ (receiving treatment that requires them to essentially live in a hospital room) don’t have a lot of options in terms of NEW gifts, books, toys that are JUST for them. Many come from socioeconomically challenged or disadvantaged homes and YOUR generosity makes a massive, life changing impact.
As I age, the urgency to let children with rare diseases or crummy circumstances know that there is hope for a brighter future rises. If I was a millionaire and able to donate in a massive way, I’d probably still be asking you to contribute to the Child Life Department because awareness and acceptance is part of the giving process.
I have spoken about my disease in detail before but if you have any questions that aren’t answered in these posts below, please feel free to reach out.
Here’s a recent video I created to explain Autoimmune Diseases in an easy to understand way:
March Already? Sunny Day Ahead!
Tomorrow’s expected high is the hottest Ottawa's seen in a while at plus 12! Woohoo!
Proudly completed DryFeb with over $1,400 raised for the Canadian Cancer Society. Being sober the entire month wasn’t too bad! The whole ‘having a sinus infection the entire time’ thing sucked. I felt like I had hangovers that I certainly didn’t earn… even though I gave up the hooch.
Obviously back on the wagon and, otherwise, life is pretty great. The sun is shining and we’re getting longer days, warmer days… the ice is melting, the snowbanks are disappearing and spring is en route.
Time to think about motorcycles, spring break, cottages and spending more time outdoors.
Oh yeah, and the end of this goddamned pandemic.