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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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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...
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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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Health Update: navigating multiple conditions
I feel like I have so much to discuss since yesterday’s appointment, so here we go. NET CANCER DAY has really got me thinking a lot about how much responsibility falls on us as the patient. I’ve...
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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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