Karen’s Story

Hello, my name is Karen.

Before my diagnosis, I was a first-grade teacher, wife, mother of one, stepmother of two, and proud dog mom to two fur babies. I had always been physically active—swimming, working out, weight training, and keeping up with the busy life of a family of five. Between running kids to swim, soccer, track, and baseball practices, and cheering everyone on from the sidelines, life was full and fast-paced.

I had been remarried since 2005, and in 2006, I underwent a radical hysterectomy that left me without a cervix and with only one remaining tube and ovary. I had no idea then how much my life was about to change.

My entire life, I had been told I was “super sensitive”—not just emotionally, but physically. I’ve always been an empath, highly attuned to the emotions and energy around me. My body reacted strongly to bug bites, medications, and certain foods. I learned early on to simply avoid triggers, keep going, and take Benadryl on the really bad days.

But after my hysterectomy, things shifted dramatically.

I began reacting more intensely to foods and found myself living with severe daily joint, nerve, and muscle pain. The more active I was, the worse the pain became. Allergy testing confirmed I was allergic to some foods. However, even after avoiding them, I was still experiencing terrifying episodes—racing to the bathroom after meals, my heart pounding, my skin tingling and crawling, and my body feeling like it was shutting down. I lost 20 pounds in a single month.

My husband and I knew something more serious was wrong. I wasn’t healing from infections; I was in constant pain, and even simple daily tasks became difficult. I saw a gastroenterologist and underwent both an endoscopy and a colonoscopy. I was told there was some inflammation, but “everything looked fine”—no Celiac disease, no Crohn’s disease.

In my own trials, I knew gluten caused severe reactions, even when tests said otherwise. I stopped eating it anyway, hoping things would improve. This was 2009.

For a while, things stabilized. I ate cleaner, relied on protein shakes for two out of three meals to ease digestion, and tried to avoid triggers. Then the migraines began. The pain intensified.

A rheumatologist diagnosed me with fibromyalgia and prescribed Lyrica. I had to take the highest dose to feel any relief, but the brain fog became overwhelming. One day while driving, I suddenly had no recollection of where I was or how I had gotten there. It only lasted a few moments, but it was enough to terrify me.

I realized my body didn’t have a Lyrica deficiency—something deeper was wrong.

My joints began subluxating. My neck pain worsened. My migraines became debilitating. The rheumatologist suspected Ehlers-Danlos Syndrome (EDS), though he didn’t think I fully met the criteria.

In 2010, my symptoms escalated again. Stress at work and home was high, and I could barely eat without vomiting, diarrhea, my heart racing, and the strange sensation of ice water running through my veins.

Then I got sick—a common occurrence as a teacher of six-year-olds—but this time, I couldn’t recover. After four weeks, I was prescribed a sulfa antibiotic. Within 12 hours, I developed blistering rashes all over my body and started wheezing.

I ended up in the ER, where I was treated for atypical anaphylaxis.

My allergist later advised me to carry EpiPens, though he couldn’t clearly explain when I would need them because my triggers seemed random.

Then came May 2011.

After a long day at the beach with my 13-year-old daughter, jumping waves in the Florida sun, I suddenly felt that now-familiar sensation—ice water in my veins, tingling in my face, diarrhea, racing heart, and rapidly dropping blood pressure.

At the ER, they told me to sit and wait.

My young daughter (who later became an RN) kept insisting, “It will get worse. Mommy does this.”

I tried to explain that I had EpiPens but had never used them. The staff told me I couldn’t use them while under their care. My blood pressure kept dropping. My heart rate climbed. I was shivering uncontrollably, my oxygen levels dropped into the high 80s, and the staff admitted they were Googling Mast Cell Activation Syndrome (MCAS).

It took my daughter calling my sister, and my sister driving 45 minutes to the hospital to get my medical team’s on-call doctor on the phone to explain MCAS and authorize epinephrine. After four hours of suffering and rapid decline, they finally administered Epi.

Within 20 minutes, I felt incredible. That moment changed everything.

But, as time went on, I struggled to get out of bed. Standing at work became difficult. Walking my dogs or participating in family activities felt impossible. During my final year of teaching, 2013–2014, I had exhausted all my sick days. I dragged myself to work and fell three times in my classroom that year. On the last day of school, I left early with a fever of 103.

I never returned.

I went to Mayo Clinic at one point and left more confused than when I arrived. They confirmed EDS but remained uncertain about MCAS. My allergist still offered little help.

Finally, I found myself at Shands Hospital in Gainesville, meeting a doctor who diagnosed me with MCAS and a cytokine storm.

At last, I had answers.

I began immune system support with daily chemotherapy pills, a long list of medications, and eventually Xolair—until insurance stopped covering it. When Dr. Glover moved away, I later fought to establish care with Dr. Farnaz Tabatabian, an immunologist at USF Health, who continues to follow my care today.

Living with the Condition

I never went back to teaching.

I spent years on medical disability, trying to reclaim some sense of normalcy. During that time, I did a deep dive into gut health, functional medicine, and natural healing.

I became a Certified Functional Nutrition Counselor, Lifestyle Medicine Coach, Brain Health Coach, and National Board-Certified Health and Wellness Coach.

Through functional medicine testing, I learned I had Non-Celiac Gluten Sensitivity and severe leaky gut. I worked hard to heal.

I prioritized nine hours of sleep every night. I committed to physical therapy. I slowly rebuilt my strength and worked toward structured exercise again.

It required patience—something that did not come easily.

As someone who had been a fitness instructor in my twenties and active my entire life, accepting a body that could no longer do what I needed it to do in my forties was incredibly difficult.

I planned my life around food—what was safe, what I could risk reintroducing, and how to avoid triggering a reaction.

Time with family and friends became limited because I was afraid of what my body might do.

It is incredibly hard not to trust your own body.

And it is even harder when something as simple as grabbing a meal becomes a source of fear.

Turning Points and Lessons Learned

During recovery, I also began struggling with hearing loss.

I later learned I had developed ototoxicity from Mercaptopurine, the chemotherapy medication I had taken.

Nothing is without consequence.

That realization changed everything for me.

I went fully organic. I eliminated red meat, pork, and highly processed foods. I cleaned up my skincare, haircare, makeup, household cleaners, and detergents.

I shifted my mindset from sick care to true healing.

I was determined to get my life back.

Today, at 55, I am healthier and stronger than I have been in decades.

I eat low-histamine most days, remain strictly gluten-free—never cheating—and follow a mostly whole-food, plant-based diet with some chicken, turkey, and fish.

I have navigated through the worst of it—through menopause, COVID, caregiving for my parents at the end of their lives—and now I’m enjoying life as an empty nester, working part-time from home and spending time with my husband and our Havapoo, Milo. We just married off our youngest daughter (my baby who turned RN). I danced all night at her wedding, and I even ate a special chef-prepared meal because I advocated for it. The best part, I didn’t get sick!

Hope and Advocacy

My message to you is this:

Stay hopeful.

The moment you lose hope, your body receives that message too.

If you haven’t read The Body Keeps the Score, read it.

Heal—all of it.

Mentally. Physically. Emotionally.

Remember when I said I’m an empath? I had to dig into every hurt.

The physical pain.
The emotional pain.
The mental pain.

From a hysterectomy where my IV wasn’t turned on and I was left in severe post-op pain…
To being abandoned with a premature newborn with high needs…
To surviving controlling and abusive relationships with narcissists…

You have to do the work.

Address every scar.

Then give yourself permission to heal by releasing what no longer serves you and embracing what helps you become your best self.

Find your tribe.

Many people dismissed me because they couldn’t see what was wrong with me. They judged me for not “doing better.”

Find the people who get it—but first, become that person for yourself.

Learn what you need. Learn how to communicate it. Teach your loved ones about your condition. Invite them into your journey.

Find support groups. Find leaders who truly see you.

For me, that person was a fellow TMS community member.

She was a light in my darkness. She helped educate me about MCAS, taught me how to advocate for myself, and inspired me to live in a way that supports true health and wellbeing.

Final Reflections

My mother once told me she saw me teaching again—not in a classroom, but standing in front of first responders.

She saw me teaching them about MCAS so they would know how to respond with care, compassion, and confidence—not with “We’re Googling it.”

She encouraged me to see this through.

I hope that one day every first responder will receive proper education on MCAS and feel prepared to respond in an emergency.

Because if it weren’t for my daughter (my sweet little first responder), I may not be here today.

I hope you have an advocate—someone who truly knows you, loves you deeply, and can stand beside you in your most frightening moments. Sometimes, that person is the very reason you make it through and live to share your story. My hope is that you not only survive, but heal, thrive, and tell your story as an inspiration to others.