By Elizabeth Paddock

I called my husband at work one afternoon in early September. “I’m having an allergic reaction,” I said, tears running down my cheeks. “My face is covered in hives.”

“What did you eat?” he asked.

“Nothing,” I replied. “I’m having an allergic reaction to our son.”

Our youngest twin sat beside me, still sobbing from his most recent meltdown. The meltdowns had become frequent – the stress of my illness taking its toll on my children. But the stress of trying to diffuse the meltdown had in turn triggered my illness. My face was red and itchy, my heart racing, my hands shaking, my stomach churning.

The tears running down my hive covered face weren’t because of the reaction. Since my diagnosis five months ago, I now understand my illness much better. It’s true, what they say- “Knowing is half the battle.” Before my diagnosis I would cry out of fear- I had no idea why my body was giving out on me, at times reacting in ways that made me certain I might die.   At least now I know. I know what’s happening to my body. I have a name for my condition. I have emergency medications and a well-worn, twice folded piece of paper tucked in my purse containing the ER protocol for those scariest reactions- because I now know what I had felt to be true for nearly six years. Despite dozens of doctors telling me it was all in my head, I now know the truth. This could potentially kill me.

But if knowing is only half the battle, what’s the other half? Living with it. And is more difficult than I had expected. A huge wave of relief washed over me when I was finally diagnosed. I cried. I danced. I reveled in the total and utter euphoria we knew such a moment would bring. But then the dust settled. And right on cue- reality set in. Sure, knowing the name of my condition makes life easier. But now I have to learn to live with it.

I have a condition called Mast Cell Activation Disorder. Mast cells are made in bone marrow and travel to connective tissues throughout the body, releasing chemical mediators as an alarm that can trigger the allergic response when truly necessary. With Mast Cell Activation Disorder (MCAD), my mast cells don’t understand what “truly necessary” means. The disorder causes my mast cells to run amok. Overly-sensitive to any number of different triggers (foods, scents, chemicals, stress, etc.), my mast cells release their chemical mediators in inappropriate tissues at inappropriate times, causing my body to think life is one giant, never-ending allergic reaction. Each mediator triggers different symptoms and symptoms can be different based on which tissue that mediator is released in. The result? A dizzying array of symptoms that are constantly moving and changing, affecting my heart, lungs, GI tract, brain, joints and skin.  On good days, I feel like I have a mild flu. On my worst days, which happen multiple times a month, my system goes into Stage 3 anaphylaxis- a hallmark of mast cell disorders.

My biggest trigger, the thing that causes my mast cells to run wild, is stress. Even worse, my body doesn’t differentiate between positive and negative stress. Excitement is biologically identical to worry or fear. If I get too excited, I can go into stage 3 anaphylaxis within minutes.  Put simply, my body thinks it’s allergic to the very thing that makes me human. Feelings and emotions.

The problem with this inability to tolerate stress and emotion is that I am the homeschooling mother of six year old identical twin boys. If parenting is an emotional rollercoaster, homeschooling twins is like riding that coaster backwards, blindfolded and without a seatbelt!  My sons make me laugh, they make me cry, they make me burst with pride then want to rip my hair out (what’s left of it anyway)- and all of that usually happens before 8:00 each morning. The ride, as crazy as it can be sometimes, is supposed to be exhilarating. But for me, it is terrifying. I live in constant fear of my next reaction. When will it happen? What will trigger it? Where will I be? Will someone be around to care for the boys? And in the moments when the terror subsides, the rare moments where I feel stable and healthy, I’m left to deal with the emotional impact of living with a chronic and rare illness.

keep-calm-and-carry-epinephrine-1This is the tough part. This is why the tears trickled down my hive covered cheeks that September afternoon when I phoned my husband at work. I have to come to grips with the fact that my own children can trigger debilitating allergic reactions. It’s a tough reality. But it’s my reality. It’s our reality. I tried to fight it for a while, but now I’m learning to accept it. Learning to cope. Learning how to be a parent with a rare disease. I’m learning how to dance in the rain, stomping through the puddles of life with my sons stomping blissfully beside me, knowing that I’ll soon spend hours or days laying on the bathroom floor. I’m learning to conquer the guilt that overcomes me on the days I can’t physically get up to care for my kids. The guilt that crushes me when my husband rushes home from his job to a household of chaos he must rein in by himself because I can’t tolerate anything but a dark and silent room.

Please join me here at Rare Daily as I contribute a once monthly piece about parenting while living with a rare disease. I’ll be honest- I’m learning as I go. But there are two things I’ve learned I can’t survive without- connecting others who share the same struggles and a good old belly laugh. It helps to have support. Stories we can relate to. To know we are not in this alone. To learn from each other and lean on each other. And it helps to laugh.  To keep a light heart and smile. Together, these things have been guiding me through this crazy journey as I learn to be a new kind of mother. A mother with a rare disease. A mother allergic to life- but not to love.

 

About the Author

Elizabeth Paddock is a mother, wife, and writer from southeast Michigan. With a master’s degree in clinical social work, Elizabeth has been a stay-at-home mother of identical twin boys for the last six years which has allowed her to focus on her family and her writing. She has written for the medical talk show Ask Dr. Nandi as well as the award winning Hollywood Mom Blog and is currently working on her first book about gifted education. Elizabeth has a primary diagnosis of Mast Cell Activation Disorder along with secondary diagnoses of Postural Orthostatic Tachycardia Syndrome and Joint Hypermobility Syndrome. For more information on mast cell disorders, please visit The Mastocytosis Society at www.tmsforacure.org.

2 thoughts on “From a Rare Parent: Allergic to Life, Not Love”

  1. Hi, Elizabeth! Thank you for your understandable definition of our condition. I have been struggling to explain this to others and I default to “its an immune system disorder that mimics severe allergies.” I look forward to following your posts =)

  2. Katherine says:

    Thanks so much for sharing this. My husband has hypokalemic periodic paralysis, which was bad enough. Last year his health took a dramatic turn for the worse, and he was just diagnosed with mast cell activation disease in addition. Add a toddler and a mildly autistic child into the mix, and you can imagine how difficult it can get. No wonder he has such a hard time dealing with difficult behaviors from the kids! I’ll look forward to your updates.

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