
After what felt like a lifetime of uncertainty—of wondering, searching, and not quite knowing what these unexplained symptoms meant—I finally got an answer earlier this year (something I’ve shared about before).
Neurofibromatosis Type 1.
Getting here hasn’t been easy, and the road ahead feels heavy once again. This season has been one of frustration and fear, but also one of learning—learning that rest, patience, and self-compassion are all part of healing, too.
Last Friday, I went for a blood test after work—one I’d booked online two weeks earlier. It might sound simple, but for me, even scheduling and navigating appointments takes energy: mental, emotional, sometimes physical. This one was no exception.
I arrived on time, handed over my requisition form, and within seconds was told they don’t perform those specific tests on Fridays. I just stood there, angry and exhausted. This was the very lab I’d been told to go to, and nothing online indicated otherwise.
My anxiety spiked. Tears fell out of sheer frustration. There’s been a lot of that lately—trying to navigate our broken healthcare system once again, this time with a new diagnosis.
Back in September, I had a phone consultation with the specialist clinic my neurologist referred me to—the only one in Canada focused solely on Neurofibromatosis, a rare neurological genetic disorder.
Earlier this year, after years of seeing doctors about what I now know are small tumours and café-au-lait spots scattered across my body, a biopsy finally confirmed it: Neurofibromatosis Type 1 (NF1).
That moment brought both relief and fear. Relief, because I finally had a name for what was happening. Fear, because now I had to face the unknown—what this means for my future, and what might come next.
Before I can have an in-person appointment at the NF Clinic—which might not happen until next spring or summer—I need to complete several tests: an MRI of my brain and spine (still waiting for that one), and specialized genetic bloodwork to identify the exact mutation that caused my condition.
So this morning, I went back to the lab to finally get that blood test done. Because it involves analyzing my DNA molecule by molecule, it’s much more complex than routine bloodwork. The results could take several months, and they’ll help determine how my care should be managed long-term, what potential complications to watch for, and whether my family will need testing too.
The hardest part has been the guilt—the quiet, heavy worry that I might have passed this gene on to my now adult children. I still don’t know which lineage it came from.
Over the years, the tumours and café-au-lait spots have continued to appear and grow, spreading slowly across my body, both inside and out. It breaks my heart that it took well over fifty years to get an answer for something that’s been visible since childhood. The fear of what lies ahead can be overwhelming at times, and I also fear that the more they continue to appear on my face, the more isolated I will become.
But today, after finally getting that blood test done, I was grateful I’d given myself permission to take a planned mental health day.
Rich already had the day off for Remembrance Day, which made it the perfect chance to slow down together. Lately, life has just felt like… a lot. And sometimes, when everything feels uncertain, the kindest thing you can do is stop pushing—and simply breathe.

We spent the day doing a little bit of everything and a whole lot of nothing, enjoying the winter wonderland outdoors. It was exactly what I needed.
It reminded me that a mental reset isn’t wasted time. It’s part of healing.
It’s part of caring for yourself, especially when life feels like it’s moving faster than you can keep up. 💛
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