Becoming My Own Chronic Disease Manager: How a Gamma Knife, Pulmonary Embolisms, and a Rare Autoimmune Disease changed everything

By Frankie
Disabled Air Force Veteran | Chronic Illness Advocate | Medical Nerd

Understanding Sarcoidosis — A Rare and Misunderstood Disease

Sarcoidosis is one of those conditions that sounds simple when you first read about it — and yet the more you learn, the more mysterious it really is. It’s a rare autoimmune disease that causes the body to form tiny clumps of inflammatory cells called granulomas in various organs. These granulomas can appear anywhere — most commonly in the lungs, lymph nodes, skin, or eyes — and they can either quietly exist without causing problems or slowly interfere with how those organs function.

What makes sarcoidosis so complex is that no one knows exactly why it happens. It’s believed to be triggered by an abnormal immune response, possibly due to genetics or environmental factors, but there’s no single cause and no single pattern. For some, it’s mild and temporary. For others, it’s chronic, progressive, and life-altering.

Pulmonary sarcoidosis — when it affects the lungs — can cause symptoms like persistent cough, shortness of breath, and fatigue. But sarcoidosis is notorious for masquerading as other diagnoses, because its symptoms are often nonspecific and atypical. Fatigue, shortness of breath, joint pain, rashes, and neurological changes can all be explained by a dozen other conditions. That’s why it often goes undiagnosed for months or years, or is discovered incidentally during imaging for something else entirely.

For me, sarcoidosis entered my story not as a diagnosis I was searching for, but as a hidden thread running through a series of medical crises, ultimately revealing itself after careful observation and follow-up. I wholeheartedly believe that my Gamma Knife radiation surgery on January 31, 2019, acted as a trigger that set in motion a cascade of conditions — from my pulmonary embolisms to sarcoidosis and my hearing loss — amplified or exacerbated by my environmental factors and underlying vulnerabilities.

My Unexpected Diagnosis — When a CT Scan Changed Everything

On January 31, 2019, I had Gamma Knife radiation to treat my arteriovenous malformation — a tangled cluster of blood vessels in my brain that I had lived with for years. It was supposed to be a precise solution to a known problem. But just five days later, on February 5th, I was in the hospital again — this time fighting for my life after developing bilateral pulmonary embolisms. Blood clots had lodged themselves in both of my lungs.

The CT scan that confirmed the embolisms did more than identify the clots. It also revealed something unexpected: bilateral hilar lymphadenopathy — enlarged lymph nodes near the lungs — which raised concerns for pulmonary sarcoidosis. At that time, I was asymptomatic, and with the immediate crisis being my pulmonary embolisms, the finding was labeled “incidental.”

Even then, my instincts kicked in. My background as an Air Force medic gave me a strong understanding of anatomy and pathophysiology, and my autistic special interests — deep dives into research and medicine — had always driven me to dig deeper, to connect dots that others might overlook. I didn’t know it yet, but those instincts would soon become my lifeline.

Because of blood clotting risks, I had to switch from my regular birth control pills to the mini pill — and by July 2019, I was unexpectedly pregnant with our third child. The pregnancy paused everything: no imaging, no biopsies, no follow-up on the incidental CT finding. So I focused on staying healthy and managing my other conditions, knowing that the mystery of the lymph nodes would have to wait.

When I delivered in March 2020, we were discharged from the hospital just one day before the world shut down due to COVID-19. I came home, exhausted and adjusting to life with a newborn — only to develop hospital-acquired pneumonia. Once that cleared, my cough didn’t go away. It lingered and grew worse over time, accompanied by shortness of breath and overwhelming fatigue.

By May 2020, after follow-up imaging, surgical biopsy and evaluation, I was officially diagnosed with pulmonary sarcoidosis. At first, I thought the diagnosis might be another layer of confusion or frustration — another rare condition to navigate. But in reality, it was the beginning of a chapter that would teach me the depth of resilience, self-advocacy, and patience.

Living With Pulmonary Sarcoidosis — The Slow Loss of Air

After our youngest son was born, my body didn’t bounce back the way I expected. Fatigue hit me in waves I hadn’t known were possible. Walking up a flight of stairs left me breathless. Simple exertion became an ordeal. My body, once strong and capable from years of military service and outdoor adventure, now betrayed me in ways I had never imagined.

Hunting trips that had been a source of joy and connection became grueling tests of endurance. I remember one trip in particular — early mornings, scanning the horizon for antelope with my husband. By mid-morning, I was so air-hungry I felt like I might pass out. No matter how deeply I breathed, it wasn’t enough. I had to retreat to the hotel afterward, sleeping until the next day just to recover enough to try again. Some mornings I couldn’t go at all, and on other days I could only hunt in the afternoon.

It was during our last hunting trip in September 2021 that another challenge struck. One moment, I was listening to music and scanning the landscape, and the next, my left ear went suddenly muffled — like the ringing and muffled sensation after a firearm discharge, but there was no firearm discharge and this time there was no relief. My hearing never fully returned.

I immediately did a deep dive into research. I discovered that Gamma Knife radiation can, in rare cases, cause hearing loss. I reached out to the neurosurgeon and radiation oncologist who had performed the procedure and presented my findings. They denied that the surgery could have caused my hearing loss and effectively sent me in the wrong direction.

With surgery ruled out as a likely cause, I moved on to the next possibility: sarcoidosis. But for sarcoidosis to affect hearing, it would have to be neurosarcoidosis, which is far rarer than pulmonary sarcoidosis — essentially highly unlikely. Because there were no visible brain lesions, a biopsy wasn’t possible, leaving my doctors without a clear explanation. Eventually, my sarcoidosis specialists at UCSF diagnosed me with neurosarcoidosis, which led to steroid IV infusions and low dose chemotherapy IV infusions. These infusions temporarily improved my hearing, suggesting that something rheumatological may indeed be affecting my auditory system — though ultimately some of the treatments ended up being unnecessary.

Sarcoidosis’s ability to masquerade as other conditions made this journey even more complex — each symptom could have been explained by something else entirely, which meant I had to rely on meticulous observation, research, and self-advocacy to understand what was really happening in my body.

Around the same time, I was also on prednisone to treat sarcoidosis, which caused rapid weight gain and the classic “moon face,” and I had begun methotrexate, a low-dose chemotherapy medication meant to control inflammation. The combination was brutal. Fatigue became nearly constant. Appetite vanished. Nausea was a daily companion. Within a year of my son’s birthday, I looked at family photos and barely recognized myself — my body had changed despite my efforts to eat well and remain active.

Every day became a balancing act: managing treatment side effects, navigating breathlessness, keeping up with my children, and trying to maintain the life I had known before illness took hold. And yet, even in the fatigue, pain, and frustration, I learned something vital: I was the person who could connect the dots, advocate for myself, and push forward when medical systems couldn’t fully see the whole picture.

Becoming My Own Chronic Disease Manager

Living with multiple rare and overlapping conditions taught me something vital: in many ways, no one else will see your body the way you do. I quickly became my own advocate, researcher, and sometimes even savior.

I have a primary care provider through the VA who is supportive, but in practice, my care often depends on my initiative. I request referrals, track labs, notice urgent changes, and ensure nothing critical slips through the cracks. I see an Ehlers-Danlos Syndrome (EDS) specialist who oversees my treatment for chronic pain, MCAS, POTS, and hypotension, but I am the one doing the detailed research on my conditions. I come to appointments armed with notes, questions, and observations — often including things that had been missed or overlooked.

My experience as an Air Force medic has been invaluable. It trained me to understand anatomy, physiology, and pathology in a way that most patients never do. Coupled with my autistic special interests — deep, focused study of research and medicine — I can comprehend complex, overlapping conditions and anticipate complications. That combination has quite literally saved my life more than once: from noticing patterns that led to early intervention with my AVM and pulmonary embolisms to advocating for treatments for sarcoidosis before it could cause irreversible damage.

Becoming my own chronic disease manager isn’t just about knowledge. It’s about resilience, persistence, and self-trust. It’s about keeping going when the medical system doesn’t have all the answers, when tests are delayed, and when treatments come with burdensome side effects. Even in the hardest moments — when breathlessness, fatigue, hearing loss, and medication side effects threatened to define my life — I learned that understanding my own body and advocating for it was empowering.

In my view, the Gamma Knife surgery may have been the spark that triggered this cascade of overlapping conditions — a complex interplay of genetics, immune responses, and environmental factors. Recognizing that possibility helped me connect the dots and pursue the most appropriate care, even when conventional medicine offered no clear explanation.

Reflection — What I’ve Learned From My Body

Living through rare and overlapping conditions has taught me lessons no textbook could ever convey. My body has been unpredictable, challenging, and at times frightening. It has pushed me to my limits, forced me to confront vulnerability, and revealed the fragility of life in ways I never anticipated.

And yet, it has also shown me strength — not the kind measured by stamina or endurance alone, but the quiet, persistent kind that comes from knowing your body intimately, trusting your instincts, and advocating fiercely when the system falls short. I have learned that knowledge is power, that research and observation are tools of survival, and that the most effective medicine is often a combination of self-awareness, preparation, and courage.

Sarcoidosis is no joke. Pulmonary sarcoidosis can be life-altering, even life-threatening, and living through its symptoms taught me how quickly health can shift and how crucial timely intervention is. But today, I am profoundly grateful: my sarcoidosis is in remission, my lungs are symptom-free, and I can breathe without limitation — a gift I no longer take for granted.

I have also learned to embrace the unpredictability. My journey — from Gamma Knife surgery to pulmonary embolisms, from an incidental sarcoidosis finding to post-pregnancy chronic illness, from hunting trips that tested every breath to sudden hearing loss — has shown me that life can change in an instant, but so can resilience. Each challenge has shaped me, taught me to adapt, and revealed strengths I didn’t know I had.

Ultimately, this journey is about more than disease. It’s about trust: trust in my own knowledge, my own body, and my capacity to navigate complexity when no one else can. It’s about finding empowerment in the face of uncertainty, and about realizing that even when life becomes unpredictable and exhausting, we can still find ways to live fully, learn deeply, and move forward with hope.

I am no longer just a patient; I am a chronic disease manager, a researcher, an advocate, and a survivor. Through every setback, every unexpected diagnosis, and every day of fatigue and breathlessness, I have discovered that resilience isn’t about returning to who you were — it’s about learning to thrive in the body and the life you have today.

Follow me on YouTube, Facebook, and Instagram for an inside look at my journey navigating rare and complex health conditions, sharing insights from my research and experiences, and connecting with a community that understands the challenges of chronic illness. Join me for personal stories, tips, advocacy, and moments of resilience — and be part of a space where curiosity, knowledge, and support meet.

And as always, Stay Resilient ❤️‍🩹