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 your world? Living in an unpredictable body goes beyond the scope of not being able to plan. It’s more than not knowing if you’ll get a debilitating headache or a pain flare. Those I can plan for, I do plan for. Living in an unpredictable is not being able to trust your own body. I love my body, but it’s hard to trust it. Your body can feel like the enemy. When I was first diagnosed with pheochro ..read more

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 2nd last appt of the year (5 of 6) but on the long ride there – rheumatology called and booked me in on the 20th so much for a finish line But here are some pretty big numbers I was reminded of today… While crying in disbelief with the nurses that saw me today, hand in hand we reminisced over all those numbers that led me here Two 10+ hour surgeries 3 minutes flat lined Over 900 days straight of ..read more

HELLO Fab Fam! I’m so happy you’re here. The holidays are fast approaching, the most wonderful time of year has some challenges for the chronic community. I’ve compiled my ultra fav items to help inspire YOUR shopping list! I’m only sharing products that have impacted me in a significant way. This way you can be sure to know it’s tried and true, fabulous approved These items have either brought extreme joy to my heart, solved a problem, reduced pain, improved my wellness, encouraged self love and inspired self care, and OF COURSE – helped me stay ‘fabulous’! The majority of these are from sma ..read more

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 body. NE-T stands for neuroendocrine tumor and NE-c is neuroendocrine cancers. This day brings us all together to push for change in the diagnostic process. It provides a global effort to inform patients of what symptoms to look out for. The NET CANCER DAY campaign is to KNOW THE SYMPTOMS. PUSH FOR A DIAGNOSIS. As someone who’s been touched by this disease since my teens, I can say from experien ..read more

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 always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way Somehow yesterday living it in real time while the campaign ‘know the symptoms, push for a diagnosis’ echoed in my mind…. It hit different I’ll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions The difficulty ..read more

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 always known this, and I often discuss how the information I share relies on us (the patients) to advocate for themselves in an unbelievable way Somehow yesterday living it in real time while the campaign ‘know the symptoms, push for a diagnosis’ echoed in my mind…. It hit different I’ll be giving a bit of a health update, while sharing how I prioritize multiple symptoms and conditions The difficulty o ..read more

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 This mode involves the release of stress hormones and the activation of our stress-response systems. Here’s the thing: this mode is essential, it’s life or death because our bodies NEED to be able to detect a threat and know the difference of when to fight, or flight Now, imagine not being able to make your way out. That is what life with an adrenaline secreting tumor is. Your body is trapped in th ..read more

There’s nothing simple about plasma metanephrines collections. Each time I walk into the lab, I am often met with confusion. Experienced lab technicians that haven’t seen this before, and don’t know the protocol to follow. It’s stressful, it’s unnecessary, and as an advocate for 10 years lived experience fighting this disease – I’m here to help. For the patient: please go to an experienced centre, preferably a large hospital. Please bring with you the following printed protocols including this blog Take a look previous to your appt which labs have been ordered. Some may have special instructio ..read more

Pheo para awareness week ..read more

“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 was one of my biggest fears, because it meant I was dying. Everyone was speaking to me about my death, it was the hot topic of my 20s. A lonely place to be in. If something is terrifying to you, it’s because it’s foreign. By getting to know our fears better, it will become less so. My curiosity made my fear of death less foreign. I challenged the purpose of this care, whether it was to die or to he ..read more