My mast cells have made a nest

Over the past week, I’ve been a dizzy, nauseous, painful mess. A relentless ache over my right kidney kept telling me I was dying, but I’ve felt this before and my CT scan was normal.

By the time I asked for an appointment, my emotions were as unstable as my mast cells. My specialist kindly lectured me on the importance of pain management. Pain can amplify allergic reactions. I tried to argue with her at first, but then I almost projectile vomited in her lap.

This time, my ultrasound was normal. Blood and urine were also normal. I was unsurprised, yet reassured to know I was not pregnant with what felt like Rosemary’s baby. All signs pointed to my mast cells as the culprits.

“Some MCAS patients call it a nest,” my specialist said.

I quickly went through the five stages of grief.

  1. This is not real life.
  2. I just wanted a damn kidney infection and some antibiotics. Why can’t I have normal problems that normal people can understand?!
  3. Maybe it would be easier to be pregnant with the spawn of the devil. At least then, it eventually comes out? Is that still a possibility?
  4. I’m never going to feel joy again, because all I can feel is this nest.
  5. I have a nest in my abdomen. It’s a thing.

Basically, I have a bunch of angry mast cells congregating on my right side and using my kidney as a piñata. Last time, I endured the pain for a week and half, and then it resolved on its own. I try not to think about living with these flares for rest of my life. As you can imagine, there’s no real treatment for a nest.

So today, I’m resting, taking pain pills, and lathering my back with Benadryl cream. And telling jokes to my nest.

Why didn’t the mast cell get invited to the birthday party?

 He’s too mean.

 

Get it… his-ta-mine.

Coloring is hard, friendships are harder

“When can I come over?” she messaged me.

I panicked. Does she know I am boring, feeble, and can’t offer anything except Fiji water?

For months, I had been writing the saddest story of abandonment (starring ME) in my head. None of my friends had visited me since my diagnosis. Unable to leave my house, I wished for movie nights and home cooked meals. When wishing proved futile, I alluded to my chronic illness fantasies on Facebook to no avail.

What if we have nothing to talk about and she decides I’m a total loser? Do you know what’s worse than no friends? Rejection. I hope she forgets me entirely. 

“Wednesday?” she messaged me.

Either I would have to accept her offer or wither alone in my hypocrisy. I reminded myself that she used to work in home care, and therefore was professionally trained to deal with my awkwardness. “Okay,” I said.

She did not arrive alone. Behind her, she pulled a suitcase full of coloring books, pens, and markers. We spread them across the table and began coloring our respective pages. I don’t usually enjoy coloring, but I was thankful to have company and something to focus on other than my 43,295 allergies.

Over the next several months, she continued to visit and even gave me a poodle coloring book. I warmed up to these visits. Maybe a bit too much.

Damnit, I wrecked the best poodle in this book. I couldn’t have picked an uglier color. Now I’m going to burn the whole book. I growled with frustration and showed my friend.

“Well you don’t have to sell it!” she exclaimed. I was stunned by her frankness, and then I laughed. A true friend doesn’t sugar coat your ugly poodle.

The Histamine Bucket (and Mickey Mouse)

You may have heard of the Spoon Theory to explain chronic illness. Spoons symbolize energy used on everyday tasks. Healthy people have an unlimited number of spoons to spend throughout the day. However, chronically ill people only have a limited number of spoons each day, because chronic illness zaps our energy. We learn to spend spoons more carefully, but never have enough.

MCAS has its own metaphor: The Histamine Bucket. Imagine your body is an empty bucket. Now imagine adding histamine to the bucket every time you did something. Here’s a list of examples that add histamine to the bucket:

  • Showering
  • Cleaning
  • Eating
  • Shopping
  • Walking outside

Some activities fill the bucket quicker:

  • Smelling perfume
  • Sitting in the sun
  • Drinking alcohol
  • Getting stung by a bee

Avoid an overflowing bucket at all costs. Too much histamine can cause life-threatening anaphylaxis. At the very least, an overflowing bucket could require Epi Pens and an ambulance ride (which is zero fun when your suffocating).

The emptier your bucket, the better you’ll feel. I don’t mean build a blanket fort and never leave. I mean prioritize your activities and rest in between. Of course, daily medications help too.

So, that’s The Histamine Bucket metaphor.

I relate best to a third, more animated analogy. It also involves buckets, and Mickey Mouse. Yes, I’m talking about the Sorcerer’s Apprentice.

In this analogy, I’m Mickey and my mast cells are those naughty brooms. At first, my mast cells seem competent at their job. They empty their small buckets of mediators slowly and steadily. Pleased, I start daydreaming about doing All The Things. That’s when my mast cells go rogue. They turn their job into an incessant nightmare, filling my body with chemicals. Before I realize what has happened, I’m swimming in histamine, prostaglandins, and leukotrienes. I try to end the chaos with Benadryl, but those dang mast cells won’t be stopped. I’m in over my head. Am I going to die?

Finally, the sorcerer bursts in and gives Mickey an Epi. Okay, the end is a bit of a stretch. EMTs are generally way more friendly than that sorcerer.

Which analogy do you prefer?