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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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