Create 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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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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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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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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