Where Have I Been Hiding? Systemic Mastocytosis, Chronic EBV & Alcohol

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….. It has been a minute since I last wrote. Partly because my life has been a whirlwind turning me inside out and upside down. Partly because this season of life has been incredibly difficult. There were many things I felt ashamed to share. I wanted to live in my tiny bubble, keeping myself and my children safe from the world’s opinions, voices, and actions……afraid we would all pop if I blew in the bubble wand again! It also meant I had to admit that I was giving in to my illness—accepting that it was changing my life and that I could no longer hide it like the chameleon I had learned to become.

SOOOOO…. today is the beginning of embracing my new life or maybe it’s the end of the season of seeking perfection… hmmmm??? YES, perfection is overrated and can be painful. I’m ready to walk into the season of living life baring the TRUTH….. one with an illness that has no cure, learning how to be a parent of adult children and (here’s the secret I’ve kept for so long) supporting a husband with addiction. If you don’t mind, start this blog journey over with me? I’ll dig deep and share pieces that have changed my world with hope they shape yours too.

Deep inhale….. Hold…..Exhale…..Here I go…..

I’m Not What You See

I may look okay on the outside, but inside, my body fights a battle no one can see. Chronic illness is an invisible storm, one that rages beneath the surface while I smile, work, and carry on with daily life. Some days, the pain is a quiet whisper; other days, it roars, demanding my full attention. But no matter what, I move forward—because I refuse to let an illness define who I am, steal my time with family, or take away my experiences in life.

Many people know my journey, the small pieces I chose to share, but today, I want to expose it for what it truly is. I want to shout from the mountaintops, bring awareness to its rarity, and take you on a journey—one where I refuse to let my illness own me.

Finally A Diagnosis – Mastocytosis

I have been diagnosed with Mastocytosis and Chronic Active EBV. It took time for doctors to unwrap these sneaky diseases. What a journey it was! It required persistence, self-advocacy, and an unshakable belief in myself—to know that my bad days weren’t just in my head, that I wasn’t being a hypochondriac. Every symptom, every struggle was real, and I fought to be heard.

Winning the Battle: Fighting To Be Heard

This journey started after my third child was born. Looking back, I now realize it was more than likely this unseen demon that caused three heartbreaking miscarriages before our sweet girl entered the world. At the time, I didn’t have answers—just loss, frustration, and a lingering feeling that something wasn’t right.

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After she was born, my body never fully recovered. Fatigue clung to me like a shadow, pain became a daily companion, and strange reactions left me questioning what was happening inside me. Doctor after doctor dismissed my concerns. ‘You’re just tired from having a baby,’ they said. ‘Maybe it’s stress. Maybe it’s in your head.’

But deep down, I knew. This was more than exhaustion. More than stress. And I refused to be brushed aside.

The fatigue was unlike anything I had ever felt before. It was as if a magnetic force had wrapped itself around me, pulling me to the ground, refusing to let go. Every inch of my body felt impossibly heavy, as though I was carrying a weight too great to bear.

Exhaustion consumed me. There were moments so overwhelming that I had no choice but to call 911, knowing I was about to faint. Yet, no one could truly explain what was happening. ER after ER, doctor after doctor—each visit ended the same. Temporary relief through IV fluids, nausea meds, and sometimes pain medication. But no real answers. No lasting solution. Just a cycle of survival, while the storm inside me raged on.

It became an unspoken bond between my husband and me—do not call an ambulance unless I am unable to answer you. We both knew the routine. ER trips brought only temporary relief, never answers. Eventually, I was given diagnoses: dysautonomia, tachycardia, a weakened immune system. It was not uncommon for me to test positive for Flu A, Flu B, or strep multiple times a year.

My breaking point came in 2020. The weight of grief, stress, and an unforgiving world became too much. Two deaths in my family, my mother’s breast cancer diagnosis, and a global pandemic that turned everything upside down. My body had finally had all it could handle—it screamed “ENOUGH!”.

I fainted and woke up to paramedics taking me by ambulance to the local hospital, surrounded by machines and unanswered questions. (You can read all about that experience here.)Countless tests ,isolation, and still no clear explanation. Finally, the doctors returned with their conclusion: Flu B, mono and a mini stroke. But I knew—it was more than that. My body wasn’t just sick. It was fighting something bigger than a passing virus.

This was just the beginning—an endless cycle of doctor appointments, scans, specialists, and, eventually, a bone marrow biopsy. Each step brought more questions than answers, but finally, the pieces started coming together.

In the end, I was diagnosed with a compromised immune system, dysautonomia, tachycardia/bradycardia, hypoxemia, fibromyalgia, chronic active EBV, and systemic mastocytosis—just to name a few. As it turns out, these were the perfect ingredients for the storm brewing inside me, the very foundation of mastocytosis and CAEBV.

Having this knowledge hasn’t just shaped my daily life—it has transformed my understanding of my body. Every reaction, every symptom, every flare now makes sense. I am learning how to navigate this reality, not as a victim, but as someone who refuses to be defined by it.

The Struggles Are Real: Finding Hope In Addiction

Here is where the bubble starts to expand. I’ve held onto this hidden secret for years. It has stretched me thin, caused me to withdraw from my life and fed my disease.

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My marriage was built on a love that began in middle school—innocent butterflies, stolen kisses, and hugs that turned into a lifelong friendship. Together, we created a beautiful family, built on laughter, dreams, and unwavering love. But chronic illness tests even the strongest foundations. It forces your marriage to rely on patience, sacrifice, and an unshakable commitment that goes far beyond vows spoken on a wedding day.

My husband, Heath, became my rock. On my worst days, he wasn’t just my partner—he was my source of strength, my steady hand when I felt like I might collapse. After long days at work, he took on the role of both parents, running with our children when I couldn’t, bringing joy to them when I felt trapped inside my own body. We adjusted. Instead of date nights, we cherished game nights with our kids. Instead of weekend adventures, we planned around my energy levels.

But no matter how much love existed between us, the weight of this reality was heavy. And as my burden grew, so did Heath’s need to escape. I was so consumed with trying to be the best mom I could be despite my illness that I missed the warning signs. By the time our two oldest children had moved out, Heath had become an alcoholic. And when he finally sought recovery, I was left to face this disease on my own, learning how to navigate it independently—with my teenage daughter by my side.

I couldn’t help but wonder… had my illness pushed him to that breaking point? The weight of that question only made my symptoms worse. But more than anything, I wanted to protect my daughter from the life of having an alcoholic parent. She deserved so much more.

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Weekends became long drives to visit Heath, sitting through family therapy sessions, hoping for healing. And during the week, I was caught in a cycle—taking care of myself just enough so I could hide my pain, stay strong, and be there for my husband and family. I was exhausted, torn between survival and sacrifice.

This last year has been a constant learning curve of how to stand up for myself while supporting my husband. I’ve had to learn how to support with boundaries and limits. I’ve reacted in ways I could never have imagined. I have so many experiences to share.

ADJUSTING TO NEW LIFE

A few months before Heath entered recovery, we made the difficult decision that I would take a medical leave from work. I had been a teacher for 30 years—pouring my heart into my students, providing them with the love, support, and education they deserved. Teaching wasn’t just a job; it was a part of who I was.

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Stepping away was not a decision I made lightly. I had promised myself—and my principal—that if my health ever began to impact my students’ education, I would take a break. That time had come. As much as I loved my profession, my body was telling me it was time to listen.

I remember the exact moment I knew it was time to step back and make my health my priority. I was meeting with a couple of teachers in my classroom, discussing the progress of a student, when an overwhelming wave of exhaustion crashed over me. I tried to stay present, to push through like I always did, but my body had other plans. Leaning against the wall, I slowly slid down to the floor.

I sat there, arms wrapped around my knees, desperately convincing those around me that I was okay. But I wasn’t. The brain fog was suffocating. As a reading interventionist working with many students a year, I relied on detailed notes to individualize each lesson. But my mind and body could no longer keep up— I knew I couldn’t give my students what they deserved. In a way, I lost my identity.

Making the decision to step away had a huge impact on our family. We knew we would be relying solely on Heath’s income until my retirement kicked in. But when he entered recovery, everything changed. His paycheck stopped, and eventually, he lost his job.

Our financial future was suddenly out of our hands. We needed a miracle. It was not at all what we planned. I found myself wishing I could go back to teaching but knew it was not best for my quality of life.

I continued to pray, journal, research, and immerse myself in positivity. Podcasts became my lifeline—Rachel Hollis, Mel Robbins, Jay Shetty, Shauna Niequest and Elizabeth Rider felt like my personal mentors, guiding me through the darkest days. I filled my bathroom mirror with mantras, started a blog, created vision boards, and sang loudly to Lauren Daigle and Mercy Me.

I refused to let this disease steal my quality of life. I prayed for my marriage. I prayed for the strength to support my husband through his recovery, to understand the struggles of addiction without losing myself in the process.

It was a long, lonely road most days, but it was a road I was determined to walk—one step at a time.

Adjusting to this new normal was not easy. It meant accepting my limitations while still fighting for the life I wanted. It meant reshaping my identity beyond my career, beyond my illness, and beyond the roles I had always known.

I am learning to celebrate the small victories—getting through a day with less pain, finding joy in simple moments, and allowing myself grace on the hard days (I even tattooed “GRACE” on my arm as a reminder). My marriage took on a new foundation, built on healing, understanding and TRUST rather than the weight of guilt. My daughter and I forged an unbreakable bond, weathering storms together and coming out stronger.

Life didn’t look the way I once imagined, but maybe that was okay? Because in the midst of all the struggle, I found something even more powerful—resilience, faith, and a deeper appreciation for every single day.

This journey isn’t over, but I’m here, standing, moving forward, and refusing to let illness or addiction define me. This is my new normal. And I choose to embrace it. PS – I have to remind myself often as some days I still want to scream and kick my feet to the floor in a tantrum asking “WHY ME?”

Finding Joy and Strength

In the midst of chronic illness, it’s easy to get lost in the struggles. But over time, I’ve learned that finding strength in joy is key to surviving—and thriving. Each day presents new challenges, I’ve discovered that even the smallest moments of joy can be a source of immense power. Like the day I snuck a small taste of cookie dough and did not need Benadryl after 😉

What is Mastocytosis

What is Mastocytosis? In simple terms, Mastocytosis is a rare condition where my body acts like it’s allergic to just about everything. From the heat of the sun, to certain foods, to smells, and even vibrations—my body overreacts to all of these things by creating an excess of mast cells. These mast cells are part of the immune system, but when there are too many of them, they release chemicals that cause allergic-like reactions.

Basically, my body treats normal everyday things like they are threats. This can lead to symptoms like hives, itching, trouble breathing, or even more serious reactions. It’s like my body is on constant alert, overreacting to things that shouldn’t trigger a response. The hardest part? I can’t always predict when it will happen, and sometimes it takes a toll on my day-to-day life. Okay, who needs routine and predictability anyway??? How Boring!

What is Chronic EBV, and How It Impacts My Day

Chronic Epstein-Barr Virus (EBV) is a long-lasting infection that doesn’t go away after the initial illness, causing recurring symptoms and often affecting daily life. For me, living with chronic EBV means constant fatigue, brain fog, and flu-like symptoms that never fully subside.

Fatigue: I’m always tired, like there’s a weight pressing down on me, making even simple tasks feel like a huge effort.
Brain Fog: It’s hard to concentrate or remember things. My mind often feels foggy, making it tough to stay present or finish tasks.
Flu-like Symptoms: I deal with sore throats, swollen lymph nodes, and headaches regularly. It’s as though I’m always battling a virus, but never quite sick enough for rest.
Weakened Immune System: I catch illnesses more easily and take longer to recover. My body struggles to fight off infections, which means I need to be extra cautious.
Emotional Toll: The constant exhaustion, frustration, and isolation can take a mental and emotional toll. Staying positive is a challenge, but it’s necessary.
Limited Activity: I often have to adjust plans based on my energy levels. Family outings and social events are harder to keep up with, and I need to pace myself.

Routine Is Key

My daily routine has become my anchor. It’s not a perfect routine, but it’s mine, and it’s built around what helps me feel strong and centered. Mornings are slow and intentional. I start with prayer and gratitude, grounding myself in the things that matter most. I’ve learned that even on my hardest days, there’s something to be thankful for.

I take small walks, reaching for a mile a day. I play with my pups and when I can, I call for a playdate with my grand-babies. It’s not about pushing my limits; It’s about staying present in my body, tuning in to what it needs. But here’s the tough part—half the time, I swear my body is mumbling, and the other half, I think I’m just completely deaf to it. Like, speak up, muscles! Use your words, immune system!

I make time for creativity—whether it’s journaling, writing my blog, artwork or simply being with my daughter. This is my time to recharge, to process, and to find peace. I remind myself that joy isn’t a destination; it’s something to be discovered in the moment, even in the most unexpected places.

My daily routine is carefully structured around managing my health. It consists of medications four times a day, a self-administered shot at night, an EpiPen always by my side, Benadryl in my pocket, and my trusty oxygen concentrator close by. Every day is about balance—staying mindful of my body’s needs while working within my limitations.

I used to be embarrassed to use my oxygen machine in front of others, even in front of my own family. It felt like a reminder of my limitations, something that made me stand out in a way I didn’t want. I still feel some of that embarrassment, but I’ve learned to view it differently. It’s just a tool—one that enhances my life, helping me breathe easier and stay stronger.

I’m still not best friends with the oxygen machine, but at least I’ve learned to invite it in for tea when needed. It’s not always easy, but I’ve accepted that sometimes we all need a little extra support, even if it comes in the form of a machine. It’s become a part of my routine, and though I may not love it, I’m grateful for the help it gives me.

Beyond my own health, my family and I have learned to adapt our lives to support Heath’s recovery. We limit our activities and avoid social events that might trigger temptations or make his sobriety harder to maintain. While the world keeps moving at its pace, we make space for healing in our own way. People often don’t realize how much we have to adjust to navigate both of our struggles, but it’s part of the journey we’re on together. At times I feel like I’m on my own boat passing the rest of you on a cruise ship but hey, at least I’m on the boat.

Advice to Others

To those walking this path of chronic illness and recovery, I SEE YOU. I understand the weight of every decision, the exhaustion that never quite leaves, and the longing for a life that feels ‘normal’ again. I know how hard it is to keep moving forward when it feels like your body is constantly in battle. But please know this—you are not alone. Often you find friendships with the enemy you are battling against.

You cannot hide or push away your friends, family, and the world. They are your lifeline, along with your determination, perseverance, and faith. There are days when the road feels long, and the hurdles too high to climb, but take it one step at a time. Put on your climbing shoes because even the smallest victories matter. It’s okay to rest, it’s okay to ask for help, and it’s okay to not have all the answers. Those are the days you wear your ballet shoes and tip toe around the mess. The strength you carry is in how you dance, how you keep showing up despite the pain, and how you continue to love with EVERYTHING you have.

And remember… from the wisdom of my teenage son… YOU’VE GOT THIS!