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.
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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

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8 Reasons Why My Dad Is the Most Important Man In My Life

Forever my number one guy.
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Growing up, there's been one consistent man I can always count on, my father. In any aspect of my life, my dad has always been there, showing me unconditional love and respect every day. No matter what, I know that my dad will always be the most important man in my life for many reasons.

1. He has always been there.

Literally. From the day I was born until today, I have never not been able to count on my dad to be there for me, uplift me and be the best dad he can be.

2. He learned to adapt and suffer through girly trends to make me happy.

I'm sure when my dad was younger and pictured his future, he didn't think about the Barbie pretend pageants, dressing up as a princess, perfecting my pigtails and enduring other countless girly events. My dad never turned me down when I wanted to play a game, no matter what and was always willing to help me pick out cute outfits and do my hair before preschool.

3. He sends the cutest texts.

Random text messages since I have gotten my own cell phone have always come my way from my dad. Those randoms "I love you so much" and "I am so proud of you" never fail to make me smile, and I can always count on my dad for an adorable text message when I'm feeling down.

4. He taught me how to be brave.

When I needed to learn how to swim, he threw me in the pool. When I needed to learn how to ride a bike, he went alongside me and made sure I didn't fall too badly. When I needed to learn how to drive, he was there next to me, making sure I didn't crash.

5. He encourages me to best the best I can be.

My dad sees the best in me, no matter how much I fail. He's always there to support me and turn my failures into successes. He can sit on the phone with me for hours, talking future career stuff and listening to me lay out my future plans and goals. He wants the absolute best for me, and no is never an option, he is always willing to do whatever it takes to get me where I need to be.

6. He gets sentimental way too often, but it's cute.

Whether you're sitting down at the kitchen table, reminiscing about your childhood, or that one song comes on that your dad insists you will dance to together on your wedding day, your dad's emotions often come out in the cutest possible way, forever reminding you how loved you are.


7. He supports you, emotionally and financially.

Need to vent about a guy in your life that isn't treating you well? My dad is there. Need some extra cash to help fund spring break? He's there for that, too.

8. He shows me how I should be treated.

Yes, my dad treats me like a princess, and I don't expect every guy I meet to wait on me hand and foot, but I do expect respect, and that's exactly what my dad showed I deserve. From the way he loves, admires, and respects me, he shows me that there are guys out there who will one day come along and treat me like that. My dad always advises me to not put up with less than I deserve and assures me that the right guy will come along one day.

For these reasons and more, my dad will forever be my No. 1 man. I love you!

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An Incurable Disease Doesn't Change The Love I Have For You

Because one day the one you love the most is fine and the next day they're not, it causes devastation you never truly recover from.

nadoty
nadoty
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Loving someone with an incurable disease is the most emotionally straining thing I have ever experienced.

My significant other and I have been together for almost six years. During the summer of 2018, we all noticed the significant changes he was going through. He had lost around fifty pounds and had a lack of appetite. We had figured something was going on, however, we didn't realize it was anything serious.

Fast forward to the Fall semester of 2018. I had visited my boyfriend and we had expressed certain concerns, such as, through the night I would try and get him to stop uncontrollably itching his legs to the point of bleeding, or that he was looking a little yellow and was exhausted all the time. After seeing his sister in November, while I was at school, she pleaded with him to go to urgent care because he did not look good. He was yellow, exhausted, and very sickly looking. We didn't realize that the urgent care visit would be the precedent of the rest of our lives.

After coming home for Thanksgiving and spending a week straight in the hospital with him, it finally set in that something was not right. Between all the vomit, getting moved for testing, the weakness, the constant calling for medications because the pain was so severe, and the almost month-long stay in the hospital, it hit me full force that something was really wrong. Words will never truly describe the emotions I was feeling, or the burden of my thoughts that I felt were too selfish to pass on anyone, so I kept them to myself.

When we finally got the diagnosis, we were surprised. PSC, otherwise known as Primary Sclerosing Cholangitis, is an incurable liver disease that affects the bile ducts which become scarred and inflamed, more likely than not lead to cirrhosis and an inevitable transplant. There was no cure, rather the only solution was a liver transplant, and even then the disease can be recurring.

I was thinking selfishly. I was torn in two. What would our future look like? Could we have children? Could we ever do the things we used to?

Loving someone with an incurable disease is a mix of emotions. There is a constant fear in the back of my mind that he is going to wake up in intense pain and have to be rushed to the hospital. There is a constant fear of every time waiting for the bi-weekly blood test results to come back, in fear that his Bilirubin spiked again or he is undergoing a flare up and needs to be hospitalized. There is a constant anxiety that one day he's going to be fine, and the next day he won't be. Even the simple things, such as laying beside one another, was a constant fear I had, due to the pain he was in every day. What if I hit him in my sleep on accident? What if I accidentally hugged a little too tightly and caused him pain?

Loving someone with an incurable disease can be a fluctuation of emotions, however, he makes it worth it.

nadoty
nadoty

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