I really need your help…Rare Disease Day
I’m dying but you already knew that – I just had to grab your attention The number one complaint you will hear from patients who suffered from being misdiagnosed or being undiagnosed is that nobody...
View ArticleThe things canc… (or maybe just me) sometimes don’t want to admit.
Where did all my time go? I woke up this morning having gone through the day quite upset, I’ve had a couple of consecutive days like this. This is really unlike me, but there is a reason leading up to...
View ArticleAnd we leave for round 3 – PRRT
After having said all I have to say in my last Post, gotten that off my chest… everything I’ve been feeling over the past few days… we are here. At the hospital that will give me my third round of my...
View Article4th..5th time? I’ve lost count! IS a charm 💛✨
There are two things this disease has made me become an expert with: learning how to be okay with never leaving your little comfy space (or rather being confined to it). or constantly leaving that...
View ArticleI said I would never do that again 😭
But I learned something new again yesterday these bodies we think are ours? They’re not. We think they own them, we signed them over the moment we agreed to save our selves from the disease that’s...
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...
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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I have news …
Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry...
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Your Questions…
A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions! Watch below Like and share! Follow me on Facebook & Instagram: @pheovsfabulous
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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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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Reclaiming my power
I’m feeling very inspired lately, my urge to make a difference is strong. I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. I...
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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...
View ArticleCaregiver Chats: our story
www.instagram.com/tv/CTV0qRilPhD/ If you’d like to watch the replay of our LIVE chat, I interviewed my husband for the first time ever about our journey. He shares some incredible insight about how you...
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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