Systemic Mastocytosis: Reflecting on Year 2

On this day, the international day of awareness for mast cell diseases, I post about my disease status and what has changed for me in the past year. It’s good for me to keep account of how I’m doing and what growth I’ve made. 

Two years ago, I received my indolent systemic mastocytosis diagnosis (SM) and I have spent these past two years trying to figure out my body. Mostly, my body communicates back to me through reactions with a range of severity. My low-level reactions involve itchiness, headaches, GI discomfort, and joint pain; in between might be temperature imbalances, lightheadedness, dizziness, and GI distress; my high-level reactions cause my pulse rate and blood pressure to plummet and I go into anaphylaxis and shock. 

What I have learned over these past two years is to view my body’s mast cell capacity like a bucket. Each trigger (heat, stress, food, whatever) causes my body to react varying amounts and, most importantly, those inflammatory responses are cumulative in filling my masto bucket. If the bucket reaches max capacity and starts overflowing, then my body becomes hyper reactive to every stimulus; my mast cells are already inflamed and on high alert and result in extreme reactions. Something that caused a minor headache yesterday could be the final thing to fill today’s bucket and then send me into shock. My various medications are like a hole in the bottom of the bucket, slowly emptying it out, but the draining process is slow, and it can take multiple days to dampen a disease flare. It’s much better to just stop filling the bucket in the first place! Figuring out what fills my masto bucket has been the major challenge of these past two years.

Through dietary and medication changes, I have mostly eliminated joint pain, persistent swelling, and inflammation. I can now step out of bed without having to take multiple wincing attempts to make it from the bedroom to the bathroom and I can walk long distances essentially without limit or constraint. The absence of pain is a wonderful gift; it comes from ample sacrifice, but it’s absolutely worth the trade-offs.

As a child, I frequently heard the cliché “You are what you eat.” Now that I have a quicker cause-and-effect response from ingestion of food to bad reactions, I am absolutely convinced that my individual health is tied up with what I eat. Through trial-and-error and lots of self-observation, here’s what I know about myself: 

-          Dairy leads to immediate GI distress, headache, blood pressure drop, and becoming faint. Eliminating dairy was not too challenging; as a pseudo-vegan, I rarely ate dairy products anyway. This summer, we purchased Boca burgers that we assumed were vegan but actually had cheese in them. My body alerted me immediately that I had ingested dairy, and I spent the next few hours suffering from it. Now we are extra careful about which Boca box we grab 😊 and that dairy is not included in prepared foods.  

-          Sugar causes immediate headache, inflammation, and next-day joint pain. The sugar in fruit does not seem to impact me, but white sugar, honey, molasses, etc., in desserts, jams/jellies, in peanut butter, or in any way added while cooking causes reactions. This summer I stopped eating a cereal I had eaten daily for about 10 years because I pinpointed the sugar in it was causing reactions too. Overall, giving up traditional desserts was frustrating, but attainable. Instead I switched to just eating chocolate chips with pretzels as my evening dessert and figured that would be sustainable for the long-term.

-          Unfortunately and unsurprisingly, I started developing reactions to chocolate too. Chocolate leads to immediate headache, acid reflux within the hour, and delayed joint pain. Additionally, it causes my right eye to twitch for hours. So weird! I tried to hang onto chocolate by convincing myself that some other trigger was causing reactions. But once my body started twitching within the first 2 minutes of eating a chocolate chip, I could not deceive myself any longer. I gave up chocolate too.

-          I had strong suspicions about bread consumption causing inflammation and joint pain. I don’t react to bread I bake myself, probably because of carefully limited ingredients (flour, salt, yeast, water), but I swell up in response to our family’s preferred sandwich bread. It’s highly possible that this is a sugar reaction but I have not experimented with other sandwich bread options to test this theory out. (I have not found a shelf-stable sandwich bread that does not have added sugar, brown sugar, or molasses in it. If you know one, let me know too!) The worst thing here is that a standard PB&J sandwich is no longer an option. This meal was a vital one in my mostly-vegan diet – it’s quick, easy, nutritious, transportable, and lasts for hours – and losing it has resulted in the greatest amount of hardship.

-          Eating at restaurants is a risky proposition for me. The Whomptons traditionally eat at an Indian buffet for major holidays. I had serious GI reactions to our 2019 Thanksgiving meal, so I have not eaten at an Indian restaurant since. My favorite Thai dish at my favorite Thai restaurant betrayed me three separate times in 2020. (I keep hoping that reaction will change; instead, it just starts earlier and earlier in the meal consumption. So sad!) It’s not worth experimenting with different food combinations at different restaurants to figure out what individual ingredients are causing reactions; instead, it’s easier, safer, and significantly less expensive just to cook everything at home. At this point, our family has not patronized a restaurant in months, and I look at meals made outside of our home with suspicion.

Besides losing PB&J sandwiches, the other most disappointing loss is losing strenuous aerobic exercise. I can walk, but can no longer run, jog, do step aerobics, etc., for any sustained length of time without triggering lightheadedness and, if I really push it, going into shock. As someone who LOVES to exercise, who has said for years “The best part of retirement will be exercising for as long as I want each day,” this one is a soul-crushing blow. On the positive side, COVID meant I wasn’t going to patronize a gym anyway and, because I now get all my exercise in by walking, I have explored and appreciated my greater neighborhood area even more.

I am on serious antihistamines, so my sense of smell has never been stronger. The lilac bush season in the spring was simply magical; I could smell the lilacs from a significant distance away and I rushed to shove my nose in even closer. I never actively noticed smells before, so this has been an incredibly happy benefit. Unfortunately, I am also reacting to strong smells and odors, and I have determined that I react to the smell of rubbing alcohol, hand sanitizer, and other alcohol-based cleansers and products. This is less-than-ideal during a pandemic, for sure, and it’s even more reason for me to stay home to stay safe.

I am incredibly grateful to be able to work from home this fall. Keeping myself and my family safe in this way has greatly reduced my stress load, which has helped keep my masto bucket from overflowing so frequently. I’m enjoying family time, daily walks, homemade meals, sleeping in, and being productive in ways that I want – all items of self-care for me.

Although my life has more limits now than it did two years ago, I am choosing those limits for myself rather than my body forcing me to accept them. I am so very appreciative that I have answers and explanations for my body and that, physically, I am in a much more stable state than I was before. Thank you, modern medicine! Thank you, internet discussion boards! Thank you, MastAttack.org!