MCAS Disease: A Day In the Life

Understanding MCAS Flares – the feelings, symptoms and actions.

Just Breathe……..

Almost 2 years ago (April 16, 2020) my autoimmune decided to make its presence with vengeance. This is the beginning of the journey that inspired me to share my story with you………

2:20 a.m. I looked at my iWatch. You are okay, Nikki……breathe…… My heart raced, my body began to tingle starting with my lips moving down to my toes. Breathe……… you can get through this, Nikki……. Sweat began to form droplets on the back of my neck, by forehead, by back, by ribs. Breathe……… Nikki you have been strong enough many times before. My eyelids began to feel heavy, my arms felt like a strong force was pushing them down. Breathe……….. It’s not passing, Nikki…….. Wake up your husband, Heath. 

The Unpredictable Nature Of MCAS

Just as before, Heath jumped into action. A cold, wet hand towel was gently placed on the back of my neck. The salt shaker was quickly grabbed from the counter. He poured the tiny particles in my hand. I did my best to lift my head to place my tongue on them to try to raise my heart rate and ward of the fainting. “What can I do?” He asked in despair. This question always comes up. I wish I had an answer. My body grew heavy like an elephant sat upon me. The room started to spin. Sweat droplets slowly slid down my stomach. Every ounce of me tried to stay awake. “I need help. It’s happening again.” I did my best to whisper those words to Heath. 

The sounds around me seemed so distant. I tried to focus. “She’s weak. She has a medical condition. She fainted. She needs help.” I tried to put the string of words coming from my husband together to make sense. 

NO! Don’t call an ambulance! COVID 19! We can’t have them in our house! I am not going to the hospital alone! My thoughts tried to overtake what little headspace was available to think. 

Somehow I made it to the couch. My memory always becomes spotty when this happens. My feet were flat on the gray carpet trying to support my body from falling over. Old shorts made of cut off sweats, splattered with evidence of an old painting project, had just been pulled onto my body by my husband along with a sweatshirt to help keep me warm. Heath had no time to think, grabbing clothes that were close at hand. I was shaking, trembling like I was sitting in the coldest elements you could imagine. 

The Power Of Prayer; Stay Calm

Pray, Heath, pray….  He sat beside me and talked to God for me. 

My 13 year old daughter!!  “Go tell Sophia everything is Okay.” Protect her! Don’t scare her! My mind raced. 

Two paramedics entered through our door. Masks on their faces and gloves on their hands. Blood pressure was taken …. my mind does not remember much of this…maybe for protection of my own thoughts, fears? So many questions were asked. I could hear them but could not answer. My mind was foggy, living in the moment of what felt to be in slow motion. Why can’t I speak? I struggled to push out a word… one word… any word. With great thought and work, I stammered out a word. It was broken sounds, stuttered. Working so hard on trying to understand the moment and talk, I had no idea I had lost control of the right side of my body. I tried to lift my arm, it moved with a shaking I could not control. Can I move my leg…… it reacted the same as my arm. 

I turned to look at Heath, locked eyes and uttered as best as I could….. PRAY. 

At that moment, I let go of fear and agreed to be taken to the hospital, COVID could not stop the need for help, the need to live! 

I don’t recall much of the ambulance ride. My last memory was Heath’s face through the small square window and his hand pressed against the glass. A look of deep apology, possibly worry or fear in his eyes. 

MCAS: The Unknown Rare Condition – Not Another ER Visit!

There was no waiting in the ER. ALONE…..Everyone around me was moving quickly! Asking me so many questions I could not comprehend or get out words to answer. I tried to tell them I have a medical condition, hypopituitarism, Empty Sella Syndrome…….. I could not. Each nurse, doctor that came into my room, looked like the scientist from “ET”….. double masked, plastic face shield, bright yellow protective gown. It was surreal. I saw it on TV but did not understand the severity of COVID until that moment. However fear for my life pushed any fear of COVID away. 

I was taken to get a Cat Scan. The hallway spun, the room spun…. I still could not speak. Pray Nikki, pray………  I was lifted to the table. Voices around me explaining what was happening. They were only waves of sound that I tried to comprehend. FEAR that is all I could feel. Thoughts of my children is all I could think of. 

Pray Nikki, pray. There is Power In Prayer!

I could not find words to say to God. My thoughts were too jumbled. I attempted to find a Lauren Diagle song to sing in my head. That should work for prayer? God would understand? I could not recall the words. 

I stopped, took a deep breath……God, Jesus, Papa, Dad …. Please take my hand. Be with me. Guide me. Heal me. Take away my fear. I turned my hand up toward the ceiling, resting on my stomach. 

I do not remember anything else from that scan. I felt enough peace to “Let Go” and “Trust”. 

There were many more moments to come over the next several weeks. A diagnosis of a TIA (mini stroke), adrenal crisis, Mono, Flu B and extreme exhaustion. 

Some days are harder than others. Some days the overwhelming sadness of not being able to do what I want or find the words I need attempts to take over. But, I find peace in living in the present moment being grateful for this day, this breath, the gifts of my family and friends that I am blessed with. A National Pandemic does not help, but it has nothing over the way God is able to switch my fears to his presence and the angels of my Dad and Papa by my side. 

Fear not ………. Focus on the beauty before…… the sound of birds, wind, giggles, a ringing phone, music, a warm hand, a gentle hug, the grass between your toes, the sunset and sunrise….. these are the luxuries that should mean the most; the purpose behind each breath you take……. BREATHE~

Update – 2/21/2024

At the time of this post, I was not diagnosed with MCAS Disease. Since, I have worked with a hematologist to confirm the diagnosis along with Chronic Active EBV. Knowing the symptoms of MCAS has provided much ease when flares do happen. I now know why. I still have not been able to pinpoint triggers. What I do know is every time I felt like this, it was anaphylaxis. I travel with an epipen now, take H1 and H2 blockers daily and never leave the house without Benadryl. I am working on finding quality of life again.