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 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 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 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...
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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...
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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...
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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“We have Cancer”
My husband and I often say “we have cancer”. A cancer diagnosis affects everyone involved, your spouse, your kids, parents, your friends, anyone who is a pivotal part of your life. Anytime we’re in...
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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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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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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....
View ArticleA lesson in life and death
“Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now” pheo vs fabulous Being palliatively treated...
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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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