Perfect 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 ArticleThere’s always a reason to smile
With so many awful things to worry about, feel, and experience… Cancer gives you two options: succumb to it’s misery and pain, and let yourself be one with it physically and mentally, or… Allow...
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 ArticleTime Limit…
Those of us with terminal cancer have the unremarkable pleasure of figuring out how to live while we are dying; yet lately, I’ve had to put all of my focus into figuring out how to not feel as though I...
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 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 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 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 ArticleBeating the odds
Five years ago, October 10th, I was told I had 1-5 years to live. I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here” It took...
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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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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...
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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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“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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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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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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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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“Listen to your body”…?
Hello? Body? I’m listening! you did WHAAAAT?! I’m sure you’ve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?! There’s a lot of different ways...
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Gallium 68: prep & overview
Congratulations! You’ve are having the ‘gold standard’ imaging with relation to pheochromocytomas and paragangliomas. The Gallium 68, I have had many of these scans, all the way from clinical trial...
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