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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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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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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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NET CANCER DAY 2022
What is global NET CANCER DAY? What does the ‘NET’ stand for? NET cancer day is recognizing all ‘neuroendocrine’ type tumors and cancers. Meaning the tumors arise from the neuroendocrine cells in the...
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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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