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Inclusive Self Care
If you’ve ever had your battery run so low that seemingly small things like brushing your teeth is WORK, this article is for you. Self care is a wonderful replenishment of the mind, body, and spirit....
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NET CANCER DAY 2022
What is global NET CANCER DAY? What does the ‘NET’ stand for? NET cancer day is recognizing all ‘neuroendocrine’ type tumors and cancers. Meaning the tumors arise from the neuroendocrine cells in the...
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Medical Gaslighting
‘Medical Gaslighting’ You may have heard this term before, maybe even more so recently. Maybe it’s happened to you, it’s not something new, but rather something that’s being acknowledged and talked...
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How to conquer ‘Scanxiety’
Friday, September 10th Another day, another hospital, another scan. It Will Be Okay I can call myself an expert by now, I would estimate in my short time on this earth… I’ve had at least 70 scans....
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Let’s talk about: pain management
In this post I’m going to give you a road map of how I manage with pain with different techniques for severe flare ups AND daily prevention. I’ve dealt with my fair share of pain, I remember living...
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The grief process…
Someone recently asked me how I deal with the anger that comes with being dismissed for so long with rare disease. So you just got your diagnosis. It’s hard to know how to feel, right? Thankful that...
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“It’s not me…!” It’s my cancer!
“Harmonious self regulation is the body’s natural state, stress pulls you into another state, of heightened biological responses that triggers a flow of hormones, increased heart rate, stimulate the...
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Let me re-introduce myself…
can·cer ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change. Quality of Life: What do these three seemingly simple words mean to you? Someone who is living with a...
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I am Rare: 2021
If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share. I’d have told you what they told me, I maybe have a year left....
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35 things I wish you knew about having a rare illness…
35 things we wish you knew about having a rare cancer, chronic disease, or rare illness. Here’s the thing, before I start… I want you to know that I’ve asked hundreds of patients fighting this disease...
View ArticleJust because I have a terminal illness…
Doesn’t mean I’m terminally ill, confused? I was too. I still might be, but I think it’s time someone explained what it is to have a terminal rare disease. With rare disease day approaching, I’d like...
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Taking back my fab!
I’m no stranger to treatments and procedures, that’s the understatement of the century! However, getting something done because I WANT IT done, that’s a new concept as of late. When you’re sick, your...
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The Mighty Article
Yesterday I shared a very personal blog that I felt could relate to a lot of people going through similar times. Not even necessarily sick people, just people who have had fading relationships for...
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10 things I’ve learned about fading relationships
Support comes in all forms when you receive a diagnosis, but as you become sicker and the “old you” starts fading away, so do your relationships. So many people want to be there for you when you first...
View Article“Couple speaking out after psychologist coaches husband to try and kill...
https://montreal.ctvnews.ca/mobile/couple-alleges-psychologist-tried-to-talk-husband-into-killing-terminally-ill-wife-1.4667916
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CTV news tonight @ 6
If ever there were a time to watch the news, tonight is the night. I will be on CTV news tonight at 6 with Emily Campbell discussing one of my most difficult events that happened to us so far. It’s...
View ArticleI made it to the water…
If you asked me two months ago where I was going to be today, my answer would be very different than right now. I’m a positive person, but when you can’t walk or talk … there’s a point where positivity...
View ArticleZebra or Unicorn 🦄
If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra. When you hear hoofbeats, we are trained to think horses, not zebras … 🦓 This means that in a...
View ArticleA zebra can be a unicorn
Pheo VS Fabulous 🚨 Coming to you live from the comforts of her 15×25 hospital suite 🏥 It’s incredible when the mental fog begins to clear just a touch and you’re able to begin to make the smallest of...
View ArticleCreate your own Fabulous
Instead of running around for last minute gifts, decorating the tree, attending fabulous parties… The tradition we have manufactured the last three years is driving through snow storms hours away,...
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