If you’ve visited my little space on the worldwide web in the past (thanks for coming back!), you’ve probably already noticed it looks reallllll different around here.You’re not wrong. In 2020, my journey through life took a major turn down a dirt path I was not expecting or prepared for (no, it has nothing to do with COVID). I got a call I would never wish on my worst enemy telling me that, not only did I have a brain tumor, but I have dozens of brain tumors. Within just a few weeks I received my first brain surgery and a diagnosis of the very rare mosaic Neurofibromatosis Type 2-Schwannomatosis (NF2-SWN) - double-dog dare you to say that three times fast. In just a few years, I received two brain surgeries, a spinal surgery, 30 radiation treatments, and as I write this, I’m in the middle of ongoing biweekly treatments. This has become a way of life for me, and I’ve had to make some hard decisions and changes.

But here’s the thing. My NF2-SWN case doesn’t compare to the hundreds of other cases I’ve researched and NF friends I’ve met.

My favorite saying is that we are all “NF-ologists” and that rings so true. We often are educating our own medical teams on what NF actually is. Beyond the symptoms of our diagnoses, we spend hours upon hours doing our own research, getting all-too-frequent scans and blood draws, getting second and third and fourth opinions, and learning about treatment options from other patients.

All that said, NF2-SWN has changed my life for the better.

I have met some of the strongest, kindest, most talented humans that I never in a million years would have met if I hadn’t walked down this obligatory dirt road. My life has taken on new meaning as I fight tirelessly for treatment options and a cure for both NF1 and NF2-SWN. Of course there have been plenty of days that I’ve missed the “old me” and my old lifestyle. But this “new” life has given me incredible purpose, has made the smallest moments so special, and has introduced me to some lifelong friends.

So if you’re still reading (you’re truly a gem!), I’m so happy you’re interested in learning about this journey. I promise it isn’t all about NF though - you’ll also find lots of pretty things once you browse around (I obviously couldn’t leave all the pretty behind!), and if you choose to subscribe to Notes on Life, you’ll get lots of DIY (I’ll even show failed attempts for a laugh!), more pretty, education about NF, and even better…every dollar goes to NF research.

Thank you for being here! It means the world to me that my little journey is worth your time, and I hope I’m able to share some value with you.