I turned twenty five
A day to celebrate magic A night to let go of all fear Your birthday has come, and you’re still here You’re so full of love, your sparkle is bright, how can we forever encapture this night? With every...
View ArticleIt’s too much.. and that’s okay
Somewhere along this path I created, pheo VS fabulous, I must have convinced myself that I had a responsibility to maintain this “fabulous” persona at all times. I said at the very beginning, I would...
View ArticleNormal
November, the month we all start to feel the holidays creep in, the parties start, the snow starts trickling down, Christmas is everywhere, and the thought that another year has passed finally hits...
View ArticlePerfect days…
It seemed as though I was having a rough time for a little while, getting all of my recent results, putting a date to my radiation, having issues with my adrenal insufficiency, and meanwhile I was just...
View ArticleRemedy for the Rare – MIBG
Well this is awkward… I think it’s been 12.. days, I don’t even know quite honestly, I’m completely disconnected from the world right now. I kind of left all of you hanging, I apologize for my absence....
View ArticleIt can only get better…
WELL I CERTAINLY HOPE SO. I keep being told it will be worse before there’s a chance of it getting better… I’ve had quite a bit of proof of the first portion of this statement, now I will have to...
View ArticleI am rare – Rare Disease Day
Although I would like to think that I use every day as an opportunity to make this disease a little more exposed, february 29th 2016 is rare disease day. A day to remind the world that although rare…...
View ArticleThis is Cancer.
How do you tell the ones you love… something you can’t begin to explain yourself” I moved into my dream home 22 days ago Twenty two days of contemplation and careful thought of how I was going to share...
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,...
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 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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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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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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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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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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