So many images!
Now that my MIBG scan is over, thank goodness, I’m onto more conventional imaging now. What are you doing on YOUR Saturday? I’m having my beautiful brains photographed, jealous?! 📸 That’s right, it’s...
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...
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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 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....
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