My Autoimmune Journey: Getting Sick, Getting Dismissed, and Finally Healing

I have debated sharing this for a long time. It is deeply personal, at times frightening to revisit, and not the kind of content most people expect from an outdoor adventure blog. But I share it because I know there are people out there going through something similar, feeling dismissed, frightened, and completely alone in their symptoms, and I want them to know they are not crazy and they are not alone.

This is the story of the last year and a half of my life. It is a story about getting very sick, about fighting a medical system that failed me at almost every turn, and about ultimately finding my way to healing through a path that no conventional doctor ever suggested. It is also a story about how being an active, outdoor person quite literally saved me.

It Started in Bend

In May 2024 I was on a press trip in Bend, Oregon, one of my favorite places in the world. I was with family, outdoors, doing what I love, and genuinely happy. Then mid-drive, I got a call. My sister had been admitted to the hospital with a severe case of shingles in her ear. Within days it had progressed so rapidly that it paralyzed half of her face.

Two days later, I woke up unable to speak. My throat was raw, I was congested, exhausted, and felt completely drained in a way that felt unlike any illness I had experienced before. I pushed through on Mucinex and made it home, but by the time I arrived, something had shifted. I had complete brain fog. I felt profoundly off in a way I could not explain.

The Night Everything Changed

Days passed and the symptoms kept evolving. The left side of my face went numb and tingly. I began feeling strange internal vibrations behind my shoulder. My left shoulder suddenly became immovable one morning, as if it had locked overnight. Then my chest began tightening. The pain escalated rapidly to a level that was genuinely unbearable.

At around three in the morning, I woke up with my entire body going numb and the room spinning. I knew, in the way you sometimes just know, that something very bad was about to happen. I calmly woke my husband and told him to call an ambulance. The next moments were chaos: screaming pain from my chest and shoulder, my whole body vibrating so intensely. I genuinely believed I was dying.

Months of Fighting to Be Seen

What followed was months of navigating one of the most broken and demoralizing systems I have ever encountered. Referrals did not go through. Appointments took months. The shoulder specialist said if things did not improve I would need surgery. The rheumatologist I eventually saw gave me more prednisone and no diagnosis. My bloodwork pointed toward a likely Mixed Connective Tissue Disease (MCTD), an autoimmune condition. They put me on Plaquenil to suppress my immune system. Months passed. I was not getting better.

The neurologist was perhaps the most devastating experience of all. I described my electric shock sensations, my numbness, my vibrations. She ordered an MRI to rule out MS. It came back negative. Her response was to suggest I likely had psychiatric issues and should be on psychiatric medication, and in the meantime to stock up on gabapentin. This was a doctor from Stanford. I sat there unable to believe what I was hearing.

Going South and Finally Being Heard

After months of hitting walls in the Bay Area, I made the decision to go to Southern California to be with family and seek care there. In a single week I was able to see a cardiologist who diagnosed pericarditis, a rheumatologist who gave me a cortisone injection that provided immediate relief, a shoulder specialist who withdrew fluid from the joint and sent it for testing on the spot, and an acupuncturist who was genuinely gifted. One week in Southern California did more for me than months in the Bay Area.

I came home and stayed in contact with those doctors while slowly weaning off the cocktail of medications I had been prescribed. Weaning off prednisone alone was its own ordeal. But I was determined to get off everything and find a different path.

Finding Functional Medicine and Low Dose Naltrexone

As symptoms returned, I turned completely away from conventional medicine and began researching integrative and functional approaches. I eventually connected with a practitioner at Samuel Integrative Health at UCI, and for the first time in over a year, I felt like someone was genuinely listening, investigating, and treating me as a whole person rather than a set of symptoms to suppress.

She introduced me to Low Dose Naltrexone, known as LDN. It is a medication used at very low doses to help regulate the immune system. It is used with chronic pain patients, autoimmune conditions, and some cancer patients, and its side effect profile is minimal. She started me at 1.5mg and instructed me to increase slowly every one and a half to two weeks as tolerated.

I increased slowly to 4mg and began to feel genuinely better for the first time. Then to 6mg, where I found my real stability. It has now been over a year on LDN and most days feel normal. Real normal. I move through my days, I hike, I parent, I create, I live.

Where I Am Today: Still Healing

I want to be honest with you about where I am right now, because healing from autoimmune disease is not a finish line you cross. It is a long, ongoing journey, and I am very much still in the middle of mine.

I still get flare-ups, especially when I am under stress. They debilitate me. They feel like dying all over again. The internal vibrations, the burning, the pain, the fear all come rushing back at once, and when they do, I have to go back on steroids to manage them and then carefully wean off again. Each time it happens, it is genuinely terrifying. It never feels like it will truly pass, even though I know intellectually that it will.

I am slowly starting to learn what a flare actually is, what triggers mine, and how to recognize the early warning signs. Stress is the biggest one. Poor sleep. Pushing too hard. I am working on prevention, but I am still figuring it out as I go. I do not know if it will ever truly get easier, or if I will just get better at carrying it. Those feel like different things and I am still learning which one is realistic.

Most days I still have weird sensations I cannot explain. Tingles, buzzing, areas of numbness that come and go. I try not to focus on them. I try to keep moving, keep living, and hope they pass on their own. Some days that works better than others.

An important note: Even when I am pursuing integrative and functional approaches, I do not navigate flares alone. I stay in close contact with my doctors, including the ones who can prescribe steroids when I need them. Choosing functional medicine is not the same as rejecting medical care. It is choosing a different kind of relationship with it. If you are dealing with autoimmune flares, please work with qualified providers, not in isolation.

What Else Has Helped

What I Want You to Know

If you are reading this and you are somewhere in the middle of your own medical mystery, being dismissed, being medicated without answers, being told it is all in your head, I want you to hear this clearly: you are not crazy. Your symptoms are real. You deserve a doctor who looks for the root cause rather than reaching for a prescription pad.

I am not here to tell you what to take or what path to follow. I am not a doctor and this is my personal experience, not medical advice. What I am saying is that functional and integrative medicine changed my life when conventional medicine had run out of things to offer me, and it is worth exploring if you are feeling stuck.

If you have questions, if you are going through something similar, or if you just want to share your own experience, please leave a comment or send me a message. You do not have to go through it alone.

This post reflects my personal health journey and is shared for informational purposes only. It is not intended as medical advice. Please consult a qualified healthcare provider regarding your own health concerns.