What Living With Mast Cell Activation Disorder Is Like

What Living With Mast Cell Activation Disorder Is Like

MCAS is a deceitful, selfish, consuming disease.
3165
views

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 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. 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 failing and a second quickly following; an oxygen mask was held over my face, and I will never forget the look on my mothers 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 more a 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 1-2 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 epi pens, 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 epi-pen, 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 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 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 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 in itself is enough to get me throughout each and every day, no matter what it may bring.

Cover Image Credit: Sabrina C

Popular Right Now

To The Friends I Won't Talk To After High School

I sincerely hope, every great quality I saw in you, was imprinted on the world.
52300
views

Hey,

So, for the last four years I’ve seen you almost everyday. I’ve learned about your annoying little brother, your dogs and your crazy weekend stories. I’ve seen you rock the awful freshman year fashion, date, attend homecoming, study for AP tests, and get accepted into college.

Thank you for asking me about my day, filling me in on your boy drama and giving me the World History homework. Thank you for complimenting my outfits, laughing at me presenting in class and listening to me complain about my parents. Thank you for sending me your Quizlets and being excited for my accomplishments- every single one of them. I appreciate it all because I know that soon I won’t really see you again. And that makes me sad. I’ll no longer see your face every Monday morning, wave hello to you in the hallways or eat lunch with you ever again. We won't live in the same city and sooner or later you might even forget my name.

We didn’t hang out after school but none the less you impacted me in a huge way. You supported my passions, stood up for me and made me laugh. You gave me advice on life the way you saw it and you didn’t have to but you did. I think maybe in just the smallest way, you influenced me. You made me believe that there’s lots of good people in this world that are nice just because they can be. You were real with me and that's all I can really ask for. We were never in the same friend group or got together on the weekends but you were still a good friend to me. You saw me grow up before your eyes and watched me walk into class late with Starbucks every day. I think people like you don’t get enough credit because I might not talk to you after high school but you are still so important to me. So thanks.

With that said, I truly hope that our paths cross one day in the future. You can tell me about how your brothers doing or how you regret the college you picked. Or maybe one day I’ll see you in the grocery store with a ring on your finger and I’ll be so happy you finally got what you deserved so many guys ago.

And if we ever do cross paths, I sincerely hope you became everything you wanted to be. I hope you traveled to Italy, got your dream job and found the love of your life. I hope you have beautiful children and a fluffy dog named Charlie. I hope you found success in love before wealth and I hope you depended on yourself for happiness before anything else. I hope you visited your mom in college and I hope you hugged your little sister every chance you got. She’s in high school now and you always tell her how that was the time of your life. I sincerely hope, every great quality I saw in you, was imprinted on the world.

And hey, maybe I’ll see you at the reunion and maybe just maybe you’ll remember my face. If so, I’d like to catch up, coffee?

Sincerely,

Me

Cover Image Credit: High school Musical

Related Content

Connect with a generation
of new voices.

We are students, thinkers, influencers, and communities sharing our ideas with the world. Join our platform to create and discover content that actually matters to you.

Learn more Start Creating

Buying New Clothes Every Month Has Been The Key To Helping Me Become Happy With My Body Again

Loving my body in new outfits has boosted my self image so much.

1234
views

Being body-positive has been really hard for me to do throughout 2019, despite there being an overwhelming surge in body-positivity around me, whether through my friends and family or YouTube. I look in the mirror and what I see is someone I want to make a jean size or two smaller like in the past. That being said, I've slowly been coming around to accepting the body I have now, instead of bashing it constantly. A key way I've come to accept the body I'm in now is through buying myself something new every month, like a new T-shirt or a pair of jeans or sneakers that help me see myself in a positive light. When I'm in a new outfit, I feel invincible. I don't think about how pudgy my stomach is, or about the hair I have growing in random places, like my neck or on my nose (yes, not just in, but ON too).

My bank account tends to suffer as of recently because of this, but it's worth it when I can genuinely feel good in what I am wearing every day. I like to wake up and think about how many outfits I can put together, ready to post my #OOTD for Snapchat without caring what anyone thinks. I've let social media dictate how I feel about myself more than I care to admit. I see how perfect all the models are in everything they're wearing from brands I know and love, yet when I try the same thing on, it's a whole different ugly story.

I don't enjoy trying things on to avoid the shame I feel when things don't fit me right, or if something that I thought would flatter me actually makes me look like a sack of potatoes. Instagram has really hurt my body image a lot — enough to make me delete it for a week after one post sent me spiraling. Going through those bumps made me finally realize it's not my fault if something doesn't fit. Sizes range depending on the item, it's the clothing items fault, not mine. Now that I see that, it's easier to brush off something not fitting me as it should. I know my size very well in the stores I frequent the most, so it's easier for me to pick out things I know will look good and not have to worry about the sizing issue.

Buying yourself something new is not something you should limit to every few months or longer. You shouldn't be afraid to go out of your comfort zone price wise every once and a while either. Coupons exist, stories always offer you them when you first sign up to receive emails and even texts. You can be crafty and still get a high price item for less. If you treat yourself to cheap things, you won't feel half as good as you want to. Granted, sticking to a limit is important but there's no shame in going over the limit every once and a while.

I love shopping as much as I love country music and writing short stories — a lot. Yes, I get yelled at almost every time I get something new. I need to save my money for important things, like for my sorority or for medical issues that could suddenly arise, or for utilities at my house next year off campus.

However, my mental well-being is not something I can ignore.

I can't push the good feelings aside to save 30 or 40 bucks a month. I don't want to feel as low as I've felt about myself anymore. I'm tired of feeling sad or angry at who I am, and I want to learn how to accept myself as I am. Buying myself something new, like clothes, is what offers a positive light to view myself under.

Whether you treat yourself to dinner at your favorite restaurant, or to face masks, or to a new movie when it comes out — don't be afraid to do it. Put yourself first and you'll realize your worth and how much you've been ignoring it in the face of poor confidence.

My confidence isn't back up to where it used to be, but it's getting there.

It may not be the most cash efficient method of self-love, but my body positivity is better than it was a few months ago. Aerie and American Eagle have really helped me become happier with my body, and I can't thank them enough for being more inclusive for people like me who are learning to love themselves again in a new body.

There is a light at the end of the tunnel for all of us hoping to promote our own body positivity, and it could all start with a simple purchase from your favorite store after you read this.

Related Content

Facebook Comments