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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...
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...
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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...
View ArticleA Loving Lesson: Interview
I was recently interviewed by a lovely young woman named Audrey. She has a beautiful blog about different forms of self care, personal growth, and healing. Through our shared interest in self care and...
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“Listen to your body”…?
Hello? Body? I’m listening! you did WHAAAAT?! I’m sure you’ve heard this phrase, probably hundreds of times. Although it is great advice – what does it actually mean?! There’s a lot of different ways...
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Gallium 68: prep & overview
Congratulations! You’ve are having the ‘gold standard’ imaging with relation to pheochromocytomas and paragangliomas. The Gallium 68, I have had many of these scans, all the way from clinical trial...
View ArticleCARE, period.
You may be surprised to hear me say this, but sometimes it’s not ‘self care’ that we require… We just need CARE, period. Let that sit for a second, how does it make you feel? For me: it instantly took...
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10 ways to calm your stress response
I’ve been living with a body that’s stuck in fight or flight since my teens. Of course for the longest time I didn’t know how to control or manage it. Then once I knew what I was dealing with, I was...
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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Trapped in fight or flight
When we are in a chronic state of stress, it causes a physiological and psychological response called survival mode. This means the MIND AND BODY are focused on one thing and one thing only: danger...
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Unanswered Questions and a Mammogram?
Last oncology visit of the year I count appointments, small wins, month to month, day by day, because there’s no line we cross or distinguishing number that says we’re ‘done’. This was originally our...
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Life in an unpredictable body
Anyone with a chronic illness knows a certain unpredictability. Whether they will have a good day or a bad day is unknown. But what if you lived in a body where the suddenness of the symptoms ruled...
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Radioactive Iodine ☢️
As I’m being wheeled in, I see the door and my stomach flips. I’m in the same room as MIBG 8 years ago… Catch up here on my experience so far with metastatic thyroid cancer and how it led me to doing...
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10 years… of grief
Nothing could have prepared me for the grief… I ‘celebrated’ 10 years. This huge milestone making it to ten years after a traumatic terminal diagnosis. Stubbornly figuring out this disease every...
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