What Life is Like With Mast Cell Activation Syndrome


I remember the day I had my first anaphylactic reaction. In fact, I remember nearly every reaction I’ve had. They’re painful to remember, but nearly impossible to forget.

I was going to study at my tutor’s office, so I grabbed some Starbucks and an Advil for my pain and sat down to get to work. I remember my arm being itchy, I scratched and scratched and before I knew it that tiny itchy spot was a hive, and that hive turned into multiple hives. Things happened fast, and before I knew it, my lips were swollen and there was a tingle in my throat. I thought that was as bad as it would get.

A few months later came my reaction to morphine, in a desperate attempt to calm my pain the emergency room nurse gave me some through my IV. Within minutes my chest was hurting more than I could explain, it became hard to breathe, my heart was racing and pounding in my chest and I felt my chest tighten with every beat. I remember doctors rushing into my room, the first round of epinephrine was failing and a second quickly following. An oxygen mask was held over my face, and I will never forget the look on my mother’s face as she watched in horror.

I remember thinking to myself that there couldn’t possibly be another reaction, that it couldn’t possibly get worse than this. Little did I know, things could and would get worse…This was only the beginning. These episodes became more frequent and left us clueless as to the trigger, so I was referred to an immunologist who led us onto the path of a vicious disease known as mast cell activation syndrome (MCAS).

Mast cells are essentially the cells responsible for causing allergic reactions. They release histamine and other mediators that are related to inflammation and reaction. In my body, for whatever reason, these cells are triggered by the most minimal and uncommon of triggers. We discovered that not only was I triggered by food and medications, but by extreme temperatures and temperature changes, emotions like stress or anxiety, scents (food related or perfume/cologne related), right down to my clothes and detergent.

My body is in a constant state of reaction. I suffer from allergy related symptoms every day. But when my tolerance is running low, I experience a more severe reaction known as anaphylaxis, and that tends to be when my throat swells and I have difficulty breathing. To put this into perspective, during a good month I can have one to two anaphylactic reactions requiring the emergency room, but when my disease flares I can find myself reacting multiple times weekly. Since I’ve been diagnosed, I’ve used over 50 EpiPens, hundreds of doses of Benadryl, and had close to 200 allergic reactions.

Despite dealing with this condition for upwards of six years, there are things that still frighten me, and I can’t forget them. Things like the feeling of your throat closing in on you as it swells, your body itching and burning, the energy I use trying to gasp for between the wheezes, the anticipation of the burn of an EpiPen, but craving the relief that spreads across your chest almost instantly.

Then there is the fear that comes with wondering, “What if it doesn’t work this time?” The fear that consumes me every time I step out of my safe bubble that is “home,” every time that I put food to my lips, every time someone enters my house, or I enter theirs. The panic I feel when I walk into a cloud of cigarette smoke, when I start to shiver from the cold or sweat from the heat. The gamble I take when I take a medication that was safe the day before but may not be safe today because that is the gift of MCAS. Those intense emotions and experiences never escape my mind, they invade my dreams and consume my memories.

Sometimes I swear I can feel my throat swelling…Or that my face is flushing. Believe it or not, sometimes I have nightmares of having a breathing tube put down my throat and can swear I feel it there. A drastic measure I’ve had to, unfortunately, endure more times that I can count.

In this unexpected whirlwind of losing things I love because of a disease that I can’t control, I’m reminded of the infinite number of blessings I’m surrounded by. I’ve learned to appreciate the mere existence of all that I love and to have that passion be enough to get me by. It took a while (and I still have my days) to admire from afar, and not hurt and grieve that I couldn’t be a part of it, but that day still came.

Really, I am so unbelievably grateful to have that bit of sunshine on the days where I’m reacting to my own hormones. MCAS is a deceitful, selfish, consuming disease. It pops up at the most inconvenient times, it will puzzle me and my doctors, it will require a lot of Benadryl, but its taught me to appreciate the calm and beauty that remains despite all that this disease has tried to take from me. That in itself is enough to get me throughout each and every day, no matter what it may bring.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: stephconnell

TOPICS
JOIN THE CONVERSATION

Related to Mast Cell Activation Disorder

A mother with her young son.

How I Honor My Son on Rare Disease Day

My son is 19 months old and has mast cell activation syndrome (MCAS), a rare condition that affects every aspect of his life. The past 19 months have been a journey as we learned to navigate this challenging condition while keeping him as healthy and safe as possible. My son can have severe reactions to practically anything, including [...]
a stack of suitcases in front of a window where you can see a plane taking off

What a Trip Looks Like When You Are on the Spectrum and 'Allergic to Life'

Recently, my partner and I had to go to a doctor’s appointment. The doctor in question is a neurologist who specializes in adult autism and who is usually booked up three months in advance. We were actually very lucky to get the appointment at all — but there was a catch: The appointment was in a city [...]
woman hiker watching the sunrise

The One Thing That Helped Me When I Didn’t Have a Name for My Illness

I am 4 years old. I am swimming in the ocean at a family reunion, and everything is beautiful and blue. I have just learned to swim and I feel triumphant — until a rip tide comes in and holds me to the sand with intense force. I am too small to reach to the sky above [...]
Amy and her son

When My Child Is Developing at a Different Pace, I Remember This

I’m a physical therapist. I value the scientific method. When working with my patients, I use objective measures and assessment tools to determine level of progress and the effect of my treatments. When a patient does not perform well on an assessment tool, I do not want them taking it personally — it is just one [...]