It's not how I had things planned. Lying on this couch and watching the ceiling fan spin was not out of boredom. It was out of necessity.

The dull hum of the ceiling fan was the only sound in the room. Round and round, the blades rotated, blurring into a circle, the center of the fan a large fixated eye staring down at me. My eyes are hot and burning. Tears roll down my face. My breasts are hot, swollen, and triggered by the thought of my child in need. In my head, on a track on repeat, my son's repeated cries of "Mama" make my chest physically ache. It had been an abrupt but necessary weaning. My heart is broken. But my children are not with me right now as I recover from oral surgery. Pain is ever present in my mouth, jaw, head, neck, and continues to radiate downward from my shoulders. The house is quiet and still where there should be noise of toddler play and babbling of a nursing infant.

My body feels as if the hand of God has crumpled me up into a ball like a scrap sheet of paper.

I sob and wonder if I will ever leave this couch to raise my children. It sounds dramatic coming from someone, not in an ICU, but I was that exhausted. I was that depressed. I was that hopeless.

It seems as if I had been this tired for years. Morning after morning, for the past several years, I woke exhausted.

No matter how many hours I slept, I couldn't get enough.

Weight gain without eating inordinate amounts, constipation, abdominal cramps, diarrhea, heavy menses, fatigue, chronic skin infections, chronic upper respiratory infections, and deficiencies had been my way of life for several years now.

My body is soft, swollen, and covered with a fluffy mantle. Cycles of hair loss and fast premature graying are making a noticeable appearance. When my feet hit the floor in the morning, it feels like someone spread gravel on the carpet bedside. My entire body hurts, and my concentration is being affected. My swollen face, limbs, and abdomen keep me looking like I can't lose that post-pregnancy weight. Daily, I was more overwhelmed than the day before. I can't seem to get anything done as each day seems to start and end in a fog.

Depression and anxiety are becoming chronic issues. Brain fog has me running in circles trying to keep house and balance life as a parent and spouse. I am struggling to keep up with my children.

I have two little people under the age of 5 to chase around the house. And they can definitely outrun me. I've had two healthy pregnancies, but recovering from them takes seemingly forever. Something is wrong. "She can bear children, so she must be okay, right?" But no one seemed to know what the problem was.

Aside from a few minor issues addressed with a bit of supplementation, my blood work is "good."

What I didn't realize at that time was that my high school habit of chewing gum had left me with a cavity that had eventually turned into a root canal as a teenager, which was redone several more times over the last eight years previous to where I was suffering now. Chronic infection and an immune response to my dental work had been slowly eating away at my immune system, which had been weakened by a pre-existing and undiagnosed soft tissue disease.

Slowly, my body had been breaking down, running on empty and struggling to continue fighting a chronic hidden infection that barely showed up as a speck on an x-ray.

At this time, I am thirty and wondering if I'd live 30 more years.

The weeks leading up to this moment on the couch were a blur. I'd paid an integrative physician I had been referred to by way of mouth $500 for a 20-minute assessment. And that assessment would end up being the key to everything. No, it wasn't covered by my insurance and it was the oddest assessment I had previously ever had performed on my person. I'd then had an oral surgery where some of my jaw bone had been scooped out, along with the previous dental work riddled with infection. I'd been on antibiotics so many times for the root canal procedure, not to mention the years prior as a junior high and high school student with chronic upper respiratory infections.

"There must be a root that we're just not getting."

This is the comment made by the dentist each time the root canal had to be repeated on the same tooth before my oral surgery in 2012. My allergy list keeps growing. It now includes food sensitivities, multiple food intolerance, and a long list of antibiotic allergies.

My neck is swollen right under my chin, on the right side of my face. My doctor and oral surgeon explained to me that there is a distinct possibility that things could get worse before they get better.

And they were right. Things would get worse.

The infection had spread down into my parotid gland. I was experiencing what the oral surgeon had termed a "healing crisis." He told me that he'd witnessed very few individuals undergo such a severe one in his career and that I was a hair's breadth away from hospitalization for IV antibiotics. If I don't turn around soon, inpatient admission is precisely where I am headed. If anything changed, I was to head straight to the ER.

It was explained to me that my immune system had been in a coma of sorts.

It reawakened when the infection had been outed from its nesting place in my jawbone and spread down into my neck. My body was working hard to eradicate the infection that had been present on and off for several years but had been smart enough to realize that it couldn't. It had remained encapsulated in my jaw until disturbed, and it hadn't even bothered to try to burn it off through fever.

My liver was overloaded with toxicity and needed support to finish the job of healing.

The human body amazes me. It's that intelligent. And it had been telling me something was wrong for years. I just couldn't interpret what it was screaming at me now. The check engine light had been on for miles, I'd been driving this vehicle without oil, and the engine had just blown up.

Did I have a disease?

Did I have an autoimmune condition?

I had many questions, and the answers seemed too elusive to so many of the professionals I'd encountered up to this point because my lab work didn't 100% define anything. After experiencing chest pain and seeing stars and fireworks after the surgery one night, I call 911.

One squad ride with a jaded EMS crew was all I needed to realize how the general population with an undefined diagnosis and symptoms that first responders aren't familiar with are treated.

Having been a health care worker myself for years, I was shocked. Had I ever treated a patient like this? These two barely legal squad runners treated me like a drug-seeking psychiatric case. I'm in one of the most vulnerable positions I've ever been in besides laboring a child into this world. And I called on them for emergency assistance as I had been warned by my oral surgeon the infection could reach my heart. They couldn't see the infection and didn't understand, so they put me in a category they did have experience with, which, unfortunately for me, was passing judgment on what they didn't understand. The average autoimmune patient has similar experiences to mine for years until something finally clicks for their provider or they get the tiniest lab value to validate their experience. Or by some miracle, they find a provider that actually listens. They are accused of seeking drugs, are repeatedly gaslit for unexplainable symptoms or have anti-depressants prescribed to them as a first line of treatment.

I vowed never to treat anyone that way after this squad ride, as I was all too familiar with the medical gaslighting that happens to an undiagnosed patient in the United States at this point.

My healing crisis would require one more additional round of antibiotics before it would finally make headway against the infection. Coupled with dietary changes and supplementation steered by an integrative doctor, my body begins to heal from years of suffering.

Spoiler alert- I return from this experience to entirely makeover my life and health after being chronically ill for several years. And shocker, my diagnosis is a combination of a couple of auto-immunity conditions.

Fast forward to 2024- I've had an autoimmune condition for most of my life. My earliest symptoms were mostly benign and occasionally inconvenient as a teenager but primarily unproblematic for the most part until puberty hit. Currently, many years later into my diagnoses, and several practitioners later, we know more about my diagnoses after experiencing my "healing crisis." All that followed that ER visit and that squad ride feels like a million years into the past, but that experience launched me on a journey that has been a wild ride full of trial and error in the world of chronic illness. Not to mention also enlightening, empowering, and fulfilling.

I eventually become a registered nurse fascinated by integrative, holistic medicine and nutrition. The lens through which I see nursing becomes increasingly more functional.

Why?

Because integrative medicine saved my life.

Current statistics tell us that autoimmunity conditions are rising in the United States and across the globe. Studies on autoimmunity have yet to be 100% on what defines having an autoimmune disorder, making it even harder to put a label and a count on. But what about those without a clear diagnosis? What about those with a benign condition flying under the radar? What about those suffering in ambiguity or a combination of disease states, making it even harder to get a precise diagnosis?

It can take years to get an accurate diagnosis. Some will never get a specific diagnosis because they simply can't communicate well what they are experiencing on daily basis in their bodies.

But here I am. Forty-one years old and I am still learning things about what my body can do, what it does well, what it can't do, what it doesn't do well and what I need to do to keep it and my heart and mind happy. I have a hyper reactive immune system and I work daily to keep inflammation that accompanies my diagnoses in check.

The good news is I am no longer on a couch, suffering, wondering about what I will accomplish in my life. Most days you will find me working with someone else to conquer their health challenges. Now at the end of the day, I have the energy I need to take care of my family or I'm off to work on something else I love. But it took me a long time to get here and I understand why so many remain frustrated by the healthcare system and continue to spin their wheels and valuable resources to get the help they need just to make it day to day. I've made it a personal mission to support others on their health journeys because of these negative experiences, hoping only to contribute positively to a paradigm shift of how we treat those with health struggles and create and empower autonomy in each person unhappy with their results in a disease management focused healthcare system.

References

1. Miller FW. The increasing prevalence of autoimmunity and autoimmune diseases: an urgent call to action for improved understanding, diagnosis, treatment, and prevention. Curr Opin Immunol. 2023 Feb;80:102266. doi: 10.1016/j.coi.2022.102266. Epub 2022 Nov 26. PMID: 36446151; PMCID: PMC9918670.

2. Durbhakula S, Fortin AH 6th. Turning Down the Flame on Medical Gaslighting. J Gen Intern Med. 2023 Nov;38(15):3426-3427. doi: 10.1007/s11606-023-08302-4. Epub 2023 Jul 5. PMID: 37407765; PMCID: PMC10682300.Durbhakula S, Fortin AH 6th. Turning Down the Flame on Medical Gaslighting. J Gen Intern Med. 2023 Nov;38(15):3426-3427. doi: 10.1007/s11606-023-08302-4. Epub 2023 Jul 5. PMID: 37407765; PMCID: PMC10682300.

3. Tang AW, Appel HJ, Bennett SC, Forsyth LH, Glasser SK, Jarka MA, Kory PD, Malik AN, Martonoffy AI, Wahlin LK, Williams TT, Woodin NA, Woodin LC, Miller IKT, Miller LG. Treatment barriers in PANS/PANDAS: Observations from eleven health care provider families. Fam Syst Health. 2021 Sep;39(3):477-487. doi: 10.1037/fsh0000602. Epub 2021 Oct 7. PMID: 34618516.

4. Xiang L, Yoon S, Low AHL, Leung YY, Fong W, Lau TC, Koh DR, Thumboo J. Social cognitive theory to improve symptom appraisal and help-seeking among patients with autoimmune rheumatic diseases: A qualitative study. Int J Rheum Dis. 2023 Nov;26(11):2258-2266. doi: 10.1111/1756-185X.14923. Epub 2023 Sep 23. PMID: 37740602.