Mastocytosis: Five Year Review

October 20 marks the general anniversary of my diagnosis of Systemic Mastocytosis, and is also Mastocytosis and Mast Cell Disease Awareness Day, so I inventory and demarcate my health developments and changes year-to-year on this day. I had 27 mast cell reactions in a 6-months span (May – October 2022) and I cut that reaction level in half this past year (26 mast cell reactions from October 2022 – October 2023). So, what’s changed in the past year to create such improvement?

I quit multiple volunteer leadership commitments to reduce stress and in the hopes that would allow me to stay in my chosen career of teaching. That didn’t quite work, unfortunately. I controlled the trigger of stress but was unable to control the environmental triggers of perfumes and chemical smells. I was hauled out of campus in an ambulance twice in the first two months. Samantha and Eric bore the burden of being my emergency health advocates, Lola received insensitive questions like “Your mom’s not at work – is she dead?”, my colleagues had to cover my classes while simultaneously being worried for me, and I had to reveal deeply personal parts of me to students. I came back after the second major reaction and, in September, told MICDS that it would be my last year of teaching. I wasn’t certain what I would do next, exactly, but I knew physically interacting with a whole lot of people each day was no longer safe for me. My disease emotionally and mentally affects those who love me, and it was too much of an ask for them to bear that heavier burden when I could limit that load. There had to be something else I could do; I would either find it or retire.

Making the decision in September gave me a school year to grieve leaving my chosen profession. I was so damn sad about what I had lost because of this disease and directly acknowledging what was happening was heartbreaking. I was too emotionally raw to write a reflection post last year; I wanted to shield myself from facing that reality. Time heals, so they say. After winter break, I had another job lined up and I told my students I was leaving. I had to answer the question “Oh no, you’re leaving!? Why!?” so many times. My students understood – they had seen me collapse or had heard stories about it – but not all adults in the community knew. How honest was I supposed to be when they asked? People made all sorts of assumptions about why I was leaving and the reality – being there was literally killing me – was a challenging one to say out loud. I committed to regular therapy to help navigate through that grief and loss, and that helped give me space to find the positives in the change. (I want to be clear that MICDS was fully accommodating and made many modifications so that I could stay; my leaving the school is not an indictment of them. They did everything right.)

I switched careers to a 40 hours-a-week, work from home with flexible hours scenario, and it’s the best thing I could have done for myself. For example, I met with my mast cell expert earlier this month – he’s in Ann Arbor, so it’s a production to see him – and I didn’t have to take time off that week for the appointment. I just worked in the airport and hotel and made up my hours otherwise. If I’m feeling badly, I make up the time when I’m feeling better. This flexibility eases my anxiety about possibly being unreliable, means that I don’t have to lean on colleagues to cover my workload, and allows me to be a better employee as a result. My mast cell doctor wants me to have some medical procedures done up there, and so I’ll work from Ann Arbor for a week in the spring, probably. I am so grateful to have this level of flexibility and employer support and I am much safer working daily in my household-controlled environment.

I have, on the whole, identified my anaphylaxis triggers. I’m very reactive to smells, and this is the primary reason I had to leave teaching. If there’s alcohol, cleaning agents, hand sanitizer, or strong fragrances involved, my body is probably reacting severely. Cleaning the house is something I can no longer participate in and, frankly, it is not safe for me to be around when someone else is cleaning. I schedule times to be out of the house so that other family members can do essential household maintenance things like clean the bathrooms or scrub the kitchen sink. I’ll be out having fun and visiting with friends, and then I’ll come home to a cleaner house. I’m so lucky to have such supportive family members!

infographic courtesy of The Mast Cell Disease Society

I also changed my medication regimen. I am maxing out the antihistamines – transitioning to 4 daily Zyrtec was a woozy week – and I added a monthly injection of Xolair. I never imagined self-administering shots but that’s a skill set I have now developed. I also added in more consistent twice-a-day H2 blockers, which have been effective with some of the cardiovascular impacts when I’m having a disease flare. I now drink a mug of veggie broth each day to get more salt in me and to boost my blood pressure. I’m finally out of historic 90/50 or lower range and into a much safer 110/60 range; keeping my blood pressure higher helps prevent the lightheadedness and dizziness that is so debilitating.

I broke my foot 6 months ago and that substantially limited my physical activity. Cardio exercise is one of the last triggers that I willingly subject myself to, so not running or doing aerobics classes certainly put me in a less reactive state. My compromise was to buy a treadmill, and I log multiple miles a day at my walking desk. If I log too many miles in a single day or if I walk too quickly, I start to get lightheaded and dizzy, so I’m trying to find the right combination that allows me to both be active and safe. Unfortunately, I do think that limiting cardio exercise is a key reason why I have had fewer reactions in this past year, and it’s something to reflect on and probably further grieve on as time passes.

At this five-year diagnosis anniversary, I am finally using the word anaphylaxis when advocating for myself and, occasionally, I will use it to describe my own mast cell reactions. By definition I have had far more anaphylactic episodes than I have been willing to admit to myself; if a reaction affects two or more body systems then it's anaphylaxis, and mine generally affect four systems simultaneously. I am getting there in acceptance -- both in acknowledging the severity of the situation as well as using more medical interventions to make the situation better. I’m grateful to have all the information I have, access to caring and knowledgeable doctors and the financial means to connect with them, and to be in a place where holding steady at a comfortable baseline is still possible. I’m able to work full-time in a meaningful way, volunteer with purpose, engage in activities that bring me joy, and connect deeply with friends and family. My life is full and worthy of celebration. Thank you for checking in with me with this annual inventory and for acknowledging Mastocytosis and Mast Cell Disease Awareness Day!