The Devil’s Arithmetic

When I was in grad school, I took immunology. I still have my textbook and refer to it sometimes, my crowded notes in the margins. The chapter on allergy and anaphylaxis is highlighted in green, somehow aggressively bright after eleven years.

It’s kind of amusing to recall this time in my life, before every mast cell activation pathway had been hammered into my brain. There’s also some black humor in reading about how IgE activation is the allergy pathway. You know, THE allergy pathway. This book doesn’t cover any other pathways. As if you cannot possibly be allergic to something without IgE.

That’s the problem, of course. This is what most healthcare providers or science majors learn in school. They learn about allergy and anaphylaxis, but they learn about the textbook description which invariably refers to IgE mediated food anaphylaxis. They learn about peanut allergy.

I don’t have a peanut allergy. I literally don’t have a single food allergy that displays the hallmark swelling/closing airway that people expect. But I have major food allergies, some bad enough to require epinephrine, IV Benadryl, Pepcid, Solu Medrol, Zofran and IV fluids.

The problem is not just that I’m allergic to some foods. It’s that I’m not always allergic to the same foods as I was the day before. Or the same medications. Or the same environmental exposures. My reactions on a given day are the cumulative product of the amount of irritation my mast cells have experienced in the previous day or two. There is always a running tally in my mind.

There are a lot of analogies and models used to describe mast cell attacks both to patients and to people who don’t have them. I have always thought of it as a bank. You make deposits and you make withdrawals. Like this:

For the sake of simplicity, let’s assume you have $100 in a bank account. Any activity that can cause mast cell activation has to be paid for. The cost is proportionate to the amount of activation. Getting a splinter: $2. Being hot: $10. Being in direct sunlight: $10. Standing up for 20 minutes while being hot in direct sunlight: $35. Cardiovascular exercise: $40. Arguing with your spouse: $60. Moderate pain experienced in your day to day life: $50. A painful medical procedure: $70. Mild cold: $40.

Some things are too costly to ever attempt.  Undercooked egg whites: $9000.  Massive bleach exposure: $7500.

You can make deposits into the bank with medications and physical changes. Getting enough sleep: $30. Wearing loose, comfortable clothes: $15. Doing orthostatic manuevers before standing up: $10. Taking baseline mast cell medications on your normal schedule: $50. Eating food that is warm but not hot: $15. Monitoring your exercise and stopping for breaks: $15. Wearing a cooling vest on a hot day: $20. Oral Benadryl: $25. IV Benadryl: $50. Steroids: $50.

So you have this running tally in your head all day long. When you start getting close to $100, you get stressed. You know you can’t afford to spend more than $100. Things that you could have done four hours ago safely are no longer safe. Things you could eat on a day spent relaxing at home inside with comfortable ambient temperature cannot be eaten if your apartment is too hot or if you are in a lot of pain.

You are constantly trying to avoid running out of dollars before you can get home and go to bed. Part of this is because you don’t want to trigger a physical reaction. Part of it is that this phenomenon – allergies as a function of circulating histamine/mast cell activation rather than IgE – is hard to explain briefly to people who don’t have this disease. So people will see you on a super crappy day only being able to eat one thing at a party and then four months later, when your body is much less inflamed, will see you eat three things at a party. And then it’s a thing, because these people invariably think that you are faking/being overdramatic as if somehow it is worth the effort to “pretend to have allergies.” WHO FUCKING DOES THAT?

Cost for being around someone who gives you shit for not always having the same restrictions: $75.

So everyday, you get $100. Except this is the US and our banks hate us so we have overdraft. This means that you can spend more money than you have but then they charge a steep fee and so the next day, you don’t have $100. You have maybe $30 dollars. After overspending, it can take a few days to get back to baseline.

Sometimes it’s worth it. Sometimes you can sort of game your body into getting more than $100 out of a day. This is the purpose of premedication for procedures and surgery. This is the purpose of good sleep hygiene, eating safe foods, not getting stressed, taking medications appropriately and on a schedule. You can bank a little. Not as much as you can overdraft, but you can get ahead a little bit.

Today, I went to the supermarket to grab some things for lunch at work. They didn’t have organic apples that looked in decent shape. They had non-organic apples and my safe peanut butter/honey and my safe pretzel chips. I had to run through my entire day to determine how much physical activity and stress was likely to be in the rest of my day to figure out what I could (probably) safely eat for lunch.

It’s like this all day, every day. This math wouldn’t be hard except that it’s constant and unavoidable and controls my life.

46 Responses

  1. Margot April 11, 2016 / 7:03 pm

    Brilliant analogy Lisa! I can so relate to this piece. Thank you.

    • Lisa Klimas April 13, 2016 / 9:30 pm

      You’re welcome!

  2. Donsnyder April 11, 2016 / 7:13 pm

    Great analogy

    • Lisa Klimas April 13, 2016 / 9:31 pm

      Thanks!

  3. Robin D Gerzema April 11, 2016 / 7:14 pm

    Thank you!! Thank you for sharing your experiences and knowledge. It has been helpful as my family meanders down this road with our daughter. Your description above is certainly on point and helpful to break it down for those that do not understand.

  4. Kristin Elam April 11, 2016 / 7:20 pm

    You make my life better every time I read your post. Ever grateful!

    • Lisa Klimas April 13, 2016 / 9:31 pm

      Thank you!

  5. Julie Campbell April 11, 2016 / 7:28 pm

    I am so glad to see someone else say this so well. Very difficult to understand myself. I think going into a grocery store makes my gut go into hyperactivity. I had yogurt one morning and puked all the way to work, I had yogurt this week, every day and it was fine. Thank you for this post. I would show it to my family and friends, but at this point, I’m not sure there is anyone who would actually read it. I think they have given up one me. Thanks. Love to read all your posts.

    • Lisa Klimas April 13, 2016 / 9:31 pm

      You’re welcome!

  6. Kristy Carey April 11, 2016 / 8:20 pm

    Your analogy was spot on!!!! I am going to bookmark this to share with my family and close friends. As you mentioned, people just don’t get how your “allergies” can change minute by minute. I enjoy your posts and have learned so much from you! THANK YOU!!!!

    • Lisa Klimas April 13, 2016 / 9:29 pm

      You’re welcome!

  7. Mani Schwartz April 11, 2016 / 8:51 pm

    This is exactly it. Thank you for spelling it out so clearly.

    • Lisa Klimas April 13, 2016 / 9:29 pm

      You’re welcome!

  8. Ktag April 11, 2016 / 9:12 pm

    Love this, and you.

    New Doc: “So you’re followed by Immunology?”
    Me: “Immunology doesn’t know what to do with me.”

    Ding. Ding. Ding. Ding. The book doesn’t cover OTHER pathways.

    • Lisa Klimas April 13, 2016 / 9:29 pm

      It was a pretty harsh realization that it wasn’t only that my diagnosis was rare, but also that most providers don’t acknowledge non-IgE reactions at all.

  9. Jennifer McCoy April 11, 2016 / 9:19 pm

    Preach sista, preach! Yes, yes and yes! This absolutely nails it. IF only your words fluttered out of our mouths so eloquently and easily at the exact times necessary, my “bank’s” deposit would rapidly rise daily! Thank you, Lisa! As always YOU ROCK!

    • Lisa Klimas April 13, 2016 / 9:28 pm

      Thanks, babe. xoxo

  10. Lynn April 11, 2016 / 9:52 pm

    Thanks for this article, Lisa. I see an allergist in Phx, who thinks my problem is IgE, not mast cell. I think I have MCAS, as does Dr. Afrin. I might have to share this with her.

    • Lisa Klimas April 13, 2016 / 9:28 pm

      Glad it helped!

  11. Sarah April 11, 2016 / 11:35 pm

    Thank you so much for taking the time to write this. My daughter is 4 and is diagnosed MCAS. We have tried in multiple different ways to explain her condition. This helps tremendously!

    • Lisa Klimas April 13, 2016 / 9:27 pm

      Sorry to hear she has MCAS, it is hard when they are so small. There is a very active group of mast cell parents on Facebook, are you in touch with them?

  12. Isabelle Nidever April 12, 2016 / 4:27 am

    I ate some very expensive organic strawberries for dinner last night. A gift from my daughter, I had doubted these organic berries would be any better than those found in my local market. But, the moment I bit into one, memories of my father’s garden came flooding back. In the many years since my childhood ramblings through our neighborhood backyards, if ever, have I tasted berries so red, ripe and flavorful. The description you wrote brought many thoughts to mind. One, in particular stands out; the manner in which our food, treatments, medications are processed is rarely consistent. One day the berries are fresh and ripe, grown in conditions that support life to full, beautiful maturity. Another day, the same basket may contain fruit tainted by something in the air, mold spores barely beginning to grow but strong enough to take hold in our bodies. I’ve tasted medicine with a strong moldy flavor, specially selected to be bottled up and dispensed to target a germ causing illness. The point is, no two berries will ever be the same. In this world of constant change, the outcome is unreliable. Your doubters know little of the constant balancing act you are juggling. Ignore their banter and know you have discovered your key to prosper. Thank-you for taking time to write it out and to share.

    • Lisa Klimas April 13, 2016 / 9:27 pm

      You’re welcome!

  13. Keeya April 12, 2016 / 6:10 am

    “The problem is not just that I’m allergic to some foods. It’s that I’m not always allergic to the same foods as I was the day before.” This is so important for people to understand, but hard to explain.

    • Lisa Klimas April 13, 2016 / 9:26 pm

      It is very hard and the fact that we know we sound ridiculous is what does the most damage, I think.

  14. Pam April 12, 2016 / 9:16 am

    Yes, Yes, Yes- Lol I’m not a numbers person so I have always thought of the “bucket” (bank), either way it is the same-nothing is easy!
    Thanks!

    • Lisa Klimas April 13, 2016 / 9:26 pm

      You’re welcome!

  15. Beth April 12, 2016 / 1:42 pm

    Lisa, hands down THE BEST explanation to why one can eat certain foods one day, and a month later be deathly allergic/reactive. I’ll never forget my cantaloupe reaction and mast-attack in the Von Maur parking lot last summer and you quickly replied to my question and brought me comfort in knowing I wasn’t going nuts! 😉 xoxo Misunderstood Zebra/aka Beth 🙂

    • Lisa Klimas April 13, 2016 / 9:26 pm

      Glad it helped!

  16. saebra April 12, 2016 / 2:05 pm

    Thank You!!

    • Lisa Klimas April 13, 2016 / 9:25 pm

      You’re welcome!

  17. lori April 12, 2016 / 4:10 pm

    That’s the hardest part about this fuxxing disease…the not knowing, the thinking you’ve been getting better and then BLAM….having a major reaction to something that didn’t seem to bother you last week….hey who knew….it nothing else, this disease prepares us to take each day as it comes. Also one has much appreciation for the good days. Much more appreciation before getting sick. Mast Cell disease sucks…but hey, I’m still here!!!

    T

    • Lisa Klimas April 13, 2016 / 9:25 pm

      Yes, we are still here. 🙂

  18. Amy April 12, 2016 / 4:49 pm

    This explains why after all these years, keeping journals, that I’ve never found any rhyme or reason what triggers my mast cells to activate. Doctors tell me otherwise. But no. One day I can walk in a store the next time I walk out sick. Same with food. Thank you for the post; greatly appreciated. Forwarding to people who don’t understand.

    • Lisa Klimas April 13, 2016 / 9:25 pm

      Glad it helped!

  19. Deborah Ewing April 13, 2016 / 12:23 am

    I thought about you all day, I had dental appointment for a cleaning. I pre medicated but the stress I had was over the top. You see I had chemotherapy last year and hadn’t been for a cleaning for two years. I was hoping my body wouldn’t react to the Bactria from the cleaning. All went well but did have a reaction later , cramps and loose stools. Now I am exhausted, I really don’t like going to the dentist.
    Thank you for sharing, I am very interested to hear your thoughts on the CKIT gene, I have a mutation which they call pedal to the floor, I know this is the driver for mast cell production but I don’t understand much else.

  20. Eileen V April 13, 2016 / 12:51 am

    Thank you so much for writing this. I re-posted it to my FB page and got so many comments and calls from friends and family who said that they never really got it until they read this. Thank you! Thank you! Thank you!

    • Lisa Klimas April 13, 2016 / 9:23 pm

      You’re welcome. I’m glad it helped your family and friends to understand what you deal with.

  21. Michelle Dellene April 13, 2016 / 8:57 pm

    You make me LOL. Seriously. I love this.

    • Lisa Klimas April 13, 2016 / 9:22 pm

      Thanks!

  22. Fiona April 14, 2016 / 3:19 pm

    Word. Nicely said.

  23. Amy April 17, 2016 / 5:49 pm

    Your blog has been immensely helpful as we attempt to understand my 9 month old’s new diagnosis. I’ve been hearing a lot of talk about whether his “bucket is full” recently, and now I get it because of this post. It’s making his most recent physical reaction seem less scary, because it’s likely caused by an accumulation of events and triggers, rather than 1, unknown, trigger. All the best to you, and thank you.

  24. Candace April 18, 2016 / 5:20 pm

    Excellent piece!

  25. kathy July 14, 2016 / 11:45 am

    Lisa, I appreciate you so much. You have been a HUGE blessing to those dealing with mast cell conditions. Thank you for your diligence and research!
    This particular article does such a good job of explaining our weird life. I know I have found myself tallying up recent exposures before I eat or do something either untried or risky. I am thankful that my family is supportive.

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