Tuesday, March 28, 2023

Scar Talk

I’m not ashamed of my scars. Is that okay? When I get offered silicone gel or other remedies to lighten scars, I’ve just never really been interested in trying them. My scars don’t bother me.

There’s the fact that I’ve gotten used to them and they’re just part of me now, but there’s more to it than that. When I look at my scars I am reminded of what I’ve survived. I’m reminded that my body has been through things that I still can’t wrap my head around, and left me in awe of the resilience of the human body. 

Whether it’s my zipper scar, my port scars, my scars from picc lines, from muscle biopsies, from laparoscopies, from chest tubes… I AM beat up. My body is not brand new and shiny. But I’m not ashamed of that. I will never look like a photoshopped model. But I know I have heart. And maybe I don’t wear my heart on my sleeve, maybe I wear it on my scars. 

To anyone else with scars, don’t be ashamed. They are proof of a fight that you won. 🥊🫶

Thursday, December 15, 2022

The Big News, and My Message to Celine Dion - From Another SPS Patient

Celine Dion announced this week that she’s been diagnosed with Stiff Person Syndrome. This was not a major news story that I ever thought I’d wake up to. After all, I’ve spent years living in a world where no one knew what the heck I was talking about when I mentioned my illness, even most doctors. 

At my slew of medical appointments, it is rare that a new doctor or nurse I speak to has heard of SPS. I usually get a look of confusion and the response of “Hmm I guess I’ll look it up later”, or they repeat back to me “Stiff person Syndrome?”, as if I just spoke alien to them.

But living in Montreal, where here in Quebec she’s our hometown hero who we love, that response is already turning into, “Oh, like Celine Dion!”

My mom, my dad, my grandmother, and I were all flooded with texts sending us links to articles or asking if we’d seen the news.

Watching the video Celine posted was heart-wrenching, because I could see the pain in her face and hear it in her voice. She must have been going through hell for a long time, and it brought me right back to the early days of my disease before my diagnosis was figured out. And the world just felt so unfair when I heard that her spasms were affecting her diaphragm, and therefore her voice.

This disease is torturous and unrelenting and painful to go through to begin with, and for it to affect what she loves most just seems so unfair.

A few years ago I wrote this quote about living with Stiff Person Syndrome; “When you have a rare disease you face two challenges. One being the illness itself, and the other, living in a world where so few people understand what you’re up against.” Thanks to Celine’s openness about her diagnosis, I think a lot of us will feel a little less alone after this week.

If I could give one message to Celine, apart from a big hug, I would tell her that she’s a fighter. I would tell her that I’m sending her all the love and good vibes and prayers in the world for her team to find the right treatments so she can continue doing what she loves for a long time. I would tell her that she’s not alone, and all of us in the small but mighty SPS community are standing by her and lifting her up. I would tell her how she’s already changed our lives by the awareness she’s brought to this disease. I would tell her that she has the biggest cheering section, and we’ll all be fighting right alongside her. You’ve got this Celine, and we’ve got you! 

Courage, Céline 🤍

Tuesday, December 29, 2020


WE MADE IT! The year that everyone will remember for mostly not the greatest reasons has come to an end. Getting through 2020 is one thing, but getting through 2020 and walking the life or death tightrope of diabetes the same time? Now some would say that takes some serious talent.

It might seem silly but when you really think about it, look at everything you made it through. Diabetes is challenging in the easiest of times, and we all know how many factors can affect our blood sugars. Getting more activity or getting less activity. Getting too little sleep or too much. Eating more or less than usual. Freedom and options to choose from to best manage your blood sugars or restrictions and less options, when you're forced to manage it any way you can. Emotional factors like stress, anger, or excitement. It all affects our blood sugar, and this year was full of it.

Proud of all of you and all the strength this year took, even maybe you didn’t realize it. You did a really good job keeping yourself alive during some really uncertain times. And if you're the parent of a kid with diabetes, then you did a really good job keeping another human alive during some really uncertain times. I hope you can take this moment to give yourself the credit you deserve.

Thursday, December 3, 2020

International Day of People with Disabilities 2020


Yesterday was International Day of People with Disabilities, but today it’s just as important.

“You never know who has a disability that you can’t see.” This quote is the one I put on my blog 3 years ago, and it’s close to my heart. The idea of that never occurred to me until I was the one on the other end of it.

Back before I ever relied on my wheelchair because of Stiff Person Syndrome, I would take the bus, and I’d be so grateful to get a seat because it would be a struggle in many ways to be standing upright. Knowing I had a disability, if the bus was full I would take a “priority seat”, but I’d feel so ashamed doing it. It felt like I could feel the stares of people thinking about my rudeness for taking one of those seats from someone who might really need it. And I would think, “If only they knew...”

As someone who sometimes has an invisible disability, and sometimes has a visible disability, I’ve seen the obvious difference in the way I’m viewed and treated when I’m seen in my chair, over and over again. And I don’t blame people at all. No one’s a mind reader, and it’s called invisible illness for a reason. But that’s why awareness is so important. No one knows to even think about invisible disabilities if they don’t know they exist.

Next time you’re around people, take a second to look around keeping an open mind. Know that any of those people that you don’t know well could be living through pain you don’t know about. Any of those people could have a life-altering condition. You never know who is going home to do chemo treatment, or who has a life-sustaining medical device under their clothes.

Be kind, and be open to what your eyes can’t see.


Monday, July 27, 2020

DKA Awareness & Type 1 Diabetes Misdiagnosis

Let’s talk about Type 1 Diabetes warning signs.

Every time I hear of a child or adult who is in the hospital fighting for their life, or worse- having lost their life after a Diabetes misdiagnosis, it breaks my heart. These posters should be in every pediatrician’s office and every family doctor’s office, because with one simple blood sugar test, lives could be saved.

As a parent, please be aware of what doctors often mistake T1D for. I’ve heard far too many stories that go like this: A kid gets sick, and they think it’s a normal bug. They take their kid to the doctor because it doesn’t seem to be going away. The doctor tells them it’s the flu and to let it run its course. So they listen, but their kid keeps on deteriorating and their *mom/dad alarms* are going off. They take them back to the doctor and the doctor prescribes them some antibiotics. They take their kid home and watch as they seem to fade away. They decide it’s enough, that this can’t be the flu, and it’s time to go to the hospital. By the time they arrive at the hospital, their kid is completely lethargic and practically unconscious. They’re taken back right away and are quickly told that their kid has Type 1 Diabetes and that they’re lucky they brought them in now, because a few more hours and they would have died. Their kid is in severe DKA and needs to go to the ICU.

!T1D CAN HAPPEN IN ADULTS AND CHILDREN ALIKE! So as an adult, please be aware of the signs yourself. And if you feel concerned at all, ask your doctor to test your blood sugar, or if it could be Type 1.

The more these warning signs are shared, the more cases of DKA can be prevented.
Look out for:
Excessive thirst
Weight loss
Frequent urination/Bed wetting
Blurry vision & headaches
Fruity breath odour
Stomach pain, nausea, vomiting
Extreme fatigue & weakness

Ask your doctor’s office if they could put up a poster.

Thursday, February 6, 2020

Fundraiser Spotlight: Spare A Rose, Save a Child


This is the vision of Life For a Child, an amazing group that raises money so that youth with Type 1 in places without access to education, insulin, and other supplies can have those resources. They work with diabetes centers in countries like Uganda, Rwanda, Ethiopia, Nepal, and 44 others.

This Valentine’s Day,  you can donate to the ‘Spare a Rose, Save a Child’ campaign by Life For a Child. The idea is simple:

1. Buy one less rose this Valentine’s Day.
2. Donate the price of that rose to Life For a Child here.
3. You’ve helped bring insulin to a child in need!

Roses are classic for Valentine’s Day, but WOW, are they expensive. But we still buy them for people we care about because it’s a gesture to show our love for them. And don’t get me wrong, I love roses. But what a beautiful, simple idea, that if we can each spare one rose (because really, who’s counting?), that money that goes to a flower that will die, can help a child continue to live by having access to insulin. People often buy a dozen roses. It looks beautiful in a bouquet and all, but personally, I’d be just as happy and flattered with one rose as I would with a dozen! And if I heard that the person who got it for me was going to get me a dozen, but instead donated the money to this campaign, I would be even more touched by their gift.

I first heard of Life For a Child when I visited their booth in the exhibition hall at a Friends For Life conference. I loved the sound of it right away (who wouldn’t?!), and when I went and looked further into their website, I was even more amazed at what they do.

I wanted to share this story from their website, that really gives you an idea of how your donation can help.

"Mireille lives with her family on the outskirts of Kigali, Rwanda's capital city.

Her father paints wheelbarrows for a living, which isn’t very well paid, but they are a close family and manage to get by.

Mireille has already been through a lot in her short life. At 10 years old she was diagnosed with type 1 diabetes.

Although the diagnosis was a terrible shock, it was a shock that the family knew all too well. Mireille’s little sister, Therese, had been diagnosed two years earlier. She was in a coma and Mireille was terrified as she watched her parents rush around trying to save her little sister’s life.

Now the same thing was happening to Mireille. The symptoms were mild at first. She was at church when she started to feel unwell. “I was weak and having blurred vision. I was thirsty. I always wanted to drink much water.” At the hospital Mireille’s father didn’t want to face the fact that both his daughters have diabetes. Surely this couldn’t happen twice? He looked at the doctor with tears in his eyes as he received the news that his eldest girl also had this cruel condition.

“It was so painful but what can I do?” Mireille's father.

When little Therese was diagnosed the hospital didn’t have any insulin so he had to go out to the pharmacy to buy it himself. It was very expensive.

He had to borrow money from friends and family and sell some of their belongings to afford the insulin and supplies she needed. It would be impossible for him to give her this medicine every day.

Diabetes knowledge is generally very limited in Rwanda, even among health professionals.
Dangerous misconceptions are often repeated as fact.

Therese’s father thought that her diabetes had been brought on because he had given her too much sugar. He felt so guilty and confused, “I never gave her a lot of sugar, so it was very hard.”

Among the pain, misinformation and worry the hospital gave Therese’s father one piece of life-saving information.

They told him to visit the Life for a Child partner center. At the center, Therese’s dad found a sanctuary. A place where they understood that he hadn’t given Therese too much sugar and knew how to make his little girl healthy again.

Most importantly, thanks to donations from people like you, the center was able to provide Therese with a regular supply of insulin, syringes, a blood glucose meter and test strips and HbA1c testing.

Today, both Mireille and Therese attend the Life for a Child partner center each month to collect their insulin and supplies and have regular checkups. This support means that they can stay in school and Mireille can continue to study History, her favorite subject. Please make a donation below to ensure Life for a Child can continue to provide Mireille and Therese with life-saving insulin and supplies."

This is just one story out of the 21,000 young people Life For a Child supports. But with those young people spanning 42 countries, and needing our help to survive, you can only imagine how many other stories can be told.

"No child should die of diabetes." It’s the truth. Where you are born should not dictate whether you should live or die with diabetes. We all deserve to live.

You can make a donation here: https://lifeforachild.org/donate/