Life According to Anaphylaxis: Mast Cell Disease

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

I was going to study at my tutors 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. 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.

Then 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 my chest tightened with every beat. I remember doctors rushing into my room, a round of epi failing and a second following an oxygen mask held over my face, and pure utter chaos. 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, that things could get worse…and this was only the beginning.

I fell in love with dance when I was little, I hated the recitals but I loved dancing. Eventually and inevitably I ended up dancing competitively and it became my life–literally and figuratively. I spent more time at dance than I did at home, I spent more time dancing than I did walking. Dance was something I could rely on when there was nothing else, it was my outlet of all the stress and frustration I experienced in being sick. It was my everything, I attribute it to helping me heal…to healing me. So you can imagine my devastation when I started to feel my throat tingle and heart palpitate in the middle of a number. Before I even finished the number my dance teacher was already pointing out how red I was turning, I’m sure you can imagine where this is going. That was the last shot. That was when I surrendered everything to my illnesses. I remember getting home from dance after another failed attempt and collapsing to my knees. I know that sounds dramatic but I truly could not fathom losing dance, the only thing that held me together and there it was happening right in front of my eyes rendering me utterly helpless.

Shortly after I was diagnosed with chronic urticaria and exercise intolerance we were led 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. I was reacting to anything and everything, and as those reactions increased I had to sacrifice more and more things that I loved.

The beach, which is, was, and always will be my safe place, is somewhere I can only seldom visit and only under a sun hat, umbrella and 80 SPF sunscreen.

Strawberries are an absolute no-go in any way, shape, or form.

The list of medications I have to treat infection, or pain, or discomfort is dwindling.

I’m growing increasingly intolerant to the mildest of scents that used to bring me comfort, like vanilla candles or cookies baking.

Crispy French fries, or chicken strips….a classic, but a goodie.

The feeling of your throat closing in on you, your face swelling, your body itching and burning, the way you use up all of your energy trying to gasp for air in between the wheezes, the fear of anticipating the burn of an epi-pen, but craving the relief that spreads across your chest almost instantly–the fear of 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 dream of being intubated and can swear I feel that tube in my throat.

In this crazy 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 apart of it, but that day still came. And I am so damn 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 you and doctors, it will require a lot of Benadryl but it’s taught me to appreciate the calm and beauty that remains despite all that this disease has tried to take from me.

That’s enough to get me throughout each and every day

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