Six years ago, I was diagnosed with mast cell activation syndrome (MCAS). Although no one is happy to have a disease, let alone one as complicated as MCAS, I celebrate my Dx day, because I know how incredibly lucky I was to get diagnosed.
On December 22, 2015, I drove a mere 5 blocks (because I was so inflamed I couldn’t walk) across campus from my office and paid a $35 copay with no awareness that I was seeing a world leading MCAS specialist. At the time, I couldn’t even find a definition of MCAS on the internet, let alone treatment options. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).
Diagnosis provided so much validation, but it did not solve my problems. Calming my mast cells required an immense amount of work. Last year, I described the first five years:
- 2016: Total destruction and despair
- 2017: Renovating my life
- 2018: Building a support system
- 2019: Survival and self-advocacy
- 2020: Dreaming again
This year, my dreams are coming true. Last week, I celebrated 6 years of diagnosis and 8 months of remission. Today, I am celebrating the launch of my first online course, Maximizing Your Medical Appointments, to help people with MCAS and other chronic illnesses.
Although on Instagram, my life looks like one nonstop gleeful adventure, I have spent most of my free time in the past three months in front of a computer pouring my knowledge and energy into this course. I created the course that I wish I had in 2015. This information would have saved me time, energy, and money.
MCAS is unpredictable. Continued remission isn’t guaranteed. I have no idea what next year will be like. But I refuse to waste a single drop of my glorious remission energy worrying about it. As long as I can, I will continue creating joy and hope for our community.