No One’s Coming to Save You: The Day the Military Broke My Faith

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

I used to believe the Air Force was a family — that when things got hard, when life hit you sideways, your brothers and sisters in uniform would rally around you.
That we’d always take care of our own.

But the day my world crumbled around me, I learned the hard way that the military isn’t a family.
It’s a system.

One that will replace you in an instant, no matter how loyal, hardworking, or dedicated you’ve been.

The Diagnosis That Changed Everything

The day before it all happened, I was diagnosed with an arteriovenous malformation (AVM) in my brain — a rare and dangerous tangle of blood vessels that could rupture at any moment. One wrong movement, one bad day, and I could have a hemorrhagic stroke.

I remember sitting with that news, numb.
It felt like there was a bomb in my head, ticking.
I was in shock, unable to process the words “high risk for rupture.”
I didn’t cry. I didn’t even think.
I just froze — hovering somewhere between disbelief and terror.

The next morning, I went into work like I always did.
I was a medic — an Airman in direct patient care, responsible for the health and safety of others.

But as I walked through the clinic, it hit me that I didn’t feel safe taking care of anyone.
I wasn’t even safe in my own body.

I tried to hold it together through my morning patients, smiling like everything was fine — because that’s what we’re trained to do: push through, show up, be mission ready.

But inside, I was falling apart.

When my last patient left, I sat there for a moment, shaking.
I knew I couldn’t keep pretending.

So I did what I thought was right: I texted my NCOIC but not before looking around for him.
I told him something like,

“I’m not doing well, and I don’t think it’s safe for me to see patients or be at work today. I’ve seen all my morning patients, and I have someone who can cover my afternoon ones.”

It wasn’t perfect communication — I could barely form sentences — but it was honest, responsible, and sent before I left.

What I didn’t know was that he wouldn’t see it until later.

The Next Morning

When I walked into work the next day, my NCOIC was in a panic.
He’d just found out that my Flight Commander was trying to charge me with being AWOL and issue an Article 15 for leaving early.

My heart dropped.
I hadn’t done anything wrong — I had followed procedure, covered my patients, and told my supervisor I wasn’t safe to be in patient care.

I had just found out I had a ticking time bomb in my brain.

He wasn’t angry with me — he was overwhelmed by the situation and scrambling to manage the fallout.

But I was devastated.

I tried to explain what had happened — that I had texted him, that I physically and emotionally couldn’t face anyone that day.

I wasn’t defiant; I was in shock.

And still, I was the one being treated like I’d abandoned my duty.

Hearing that I was being accused of dereliction of duty sent me straight into another meltdown.
I left and went to Mental Health immediately.

I was scared, confused, and broken — punished for being human in a moment when I needed compassion the most.

Fighting for Myself

After that, I did what I always do — I fought back the only way I could.

I went to JAG, requested letters of character from the doctors I worked closely with, and gathered every piece of evidence showing my professionalism, reliability, and record.

My NCOIC barely spoke to me after that.

The same people who used to call me dependable, squared away, and trustworthy now treated me like I had failed them.

Eventually, the Article 15 was reduced to a Letter of Reprimand (LOR) — but the damage was already done.
I had never been reprimanded in my entire career.
That single piece of paperwork erased years of service, dedication, and sacrifice.

Because of it, I was later ruled ineligible for my Meritorious Service Award when I was medically retired — just four months after my diagnosis.

Isolation and Double Standards

What cut the deepest wasn’t just the paperwork — it was the hypocrisy.

Around the same time, my Flight Chief received her own life-threatening diagnosis.

Everyone rallied around her.

The unit bent over backward to support her recovery, to make sure she had time and space to heal.

But when I was the one in crisis — when I was fighting to process the fact that I could die at any moment — I was punished.

It was as if because my condition was rare and invisible, it somehow didn’t count.

I wasn’t seen as a person in crisis.
I was seen as an Airman failing to perform.

It broke something in me.

I realized that my worth to the Air Force was measured only by my output — not my humanity, not my service, not my sacrifice.

Just what I could give… until I couldn’t give anymore.

The Aftermath

Within four months, I was medically retired.
I don’t remember much of that time — just flashes of fear, confusion, and grief.
My career was gone.
My reputation as a good medic, a mentor, a leader — gone.

I kept asking myself: What did I do wrong?
All I did was get sick.
All I did was tell the truth.

And yet, I was punished for it.

What I Learned

It took years for me to find peace with what happened.
The truth is, sometimes no one is going to care.
No one is going to fight for you.
No one is coming to save you.

The military will replace you in an instant — but you can’t be replaced at home.

If you ever find yourself feeling used, dismissed, or broken by a system that was supposed to protect you, remember this:

Take care of yourself first.

Your worth isn’t measured by your rank, your performance, or your ability to keep pushing through pain.
I wish I had known that sooner.

Follow My Journey

If this story resonates with you — if you’ve lived through medical trauma, chronic illness, or the invisible fight to be believed — I invite you to walk this path with me.

You can follow my journey and advocacy work on Facebook and Instagram, where I share updates, insights, and reflections on life after survival  @thechronicallyresilient

And as always,

Stay Resilient❤️‍🩹

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 ❤️‍🩹

Navigating a Complex Diagnosis: My Journey Through Rare Disease, Chronic Illness, and Advocacy

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

Hi, I’m Frankie — I’m 33 years old, a disabled Air Force veteran, and someone living with multiple complex medical conditions. I’m sharing my story not for sympathy, but in hopes of helping others feel seen, advocating for change, and holding space for anyone navigating a healthcare system that doesn’t always listen the first time — or even the tenth.

This blog is my way of organizing the chaos. I use tools like AI and technology to help structure my thoughts, because as someone with autism, ADHD, and a major neurocognitive disorder, communicating clearly and logically has become a real challenge. Masking is something I do well — on the outside, I may look "put together," but beneath that is a network of alarms, calendars, checklists, detailed notes, and the support of my husband.

Today, I want to talk about one of my most urgent health issues — undiagnosed and untreated hyperparathyroidism— and how it slipped through the cracks of the VA system for over two years.

In 2023, the VA flagged elevated calcium levels in my labs and entered a referral for Endocrinology. I had no idea. No call. No message. No follow-up. Nothing. I didn't find out until nearly a year later, when Care in the Community called me to ask if I was ready to move forward with my endocrinology appointment — a referral I never knew existed.

This should have never happened.

In August 2024, I finally had my parathyroid hormone (PTH) level checked — and it was elevated at 87, a result that should have immediately prompted further investigation. I was referred again to Endocrinology, but they declined to see me because my calcium levels looked “normal.”

Here’s what they missed: elevated PTH with normal calcium can indicate Normocalcemic Primary Hyperparathyroidism (NPHPT). It’s real, it’s documented, and it’s serious. But it requires a provider who understands the nuance — and who’s willing to dig deeper.

I’ve become symptomatic. Yes, I have fatigue from Ehlers-Danlos Syndrome, but this is different. Since August, my energy levels have dropped sharply. My sleep is unpredictable and fragmented. I now wake between 2–4 AM every day, even when I’m completely exhausted. My go-to sleep supports — including THC — have stopped working.

I'm scared that this will lead to another major flare. I’ve worked too hard to stabilize. I can’t afford to lose access to treatments, especially medications like those for ADHD, which my psychiatrist won’t prescribe if I start losing weight again.

From Air Force Medic to Full-Time Patient

Before I became a full-time patient, I was a medic in the Air Force. For seven years, I thrived in high-pressure medical environments, trained and mentored junior medics, and earned the respect of my colleagues. Medicine wasn’t just a job — it became my language, my special interest, and my safe place as an autistic person.

That experience shaped me into the kind of patient I am today — proactive, hyper-organized, and relentless when it comes to advocating for myself. Not because I think I know more than my doctors, but because I’ve learned the hard way that if I don’t stay on top of every detail, I’ll fall through the cracks.

And I already have.

The Day My Instinct Saved My Life

In early 2019, I underwent Gamma Knife radiation surgery to shrink a massive cerebral arteriovenous malformation (AVM) that carried a 78% lifetime risk of rupture. About a week later, I noticed swelling and pain in my right arm where I’d had an IV. The NP said it was probably just phlebitis. My heart rate was elevated, but they weren't concerned.

Still, something didn’t feel right.

I went to the ER. They found a thrombosis in my basilic vein and a highly elevated D-dimer. A chest CT revealed something terrifying: bilateral pulmonary emboli in all four lobes of my lungs. I was completely asymptomatic. No chest pain. No shortness of breath. Just a gut feeling and a racing heart.

If I had gone home instead of trusting my instinct, I might not be here writing this.

AVM Diagnosis: Another Case of “It’s Probably Nothing”

Backtracking a few months — in late 2018, I began experiencing pulsatile tinnitus, dizziness, and vertigo. It could have been anything. Still, I mentioned to a trusted physician mentor that I’d done some research and wondered about an AVM. He agreed it was worth looking into. He ordered the MRI.

That scan revealed a Spetzler-Martin Grade 5 AVM in my posterior corpus callosum — one of the rarest and most dangerous types. Most people don’t know they have an AVM until it ruptures. Mine didn’t. That MRI may have saved my life.

The Aftermath: Radiation, Hearing Loss, and Cognitive Decline

Within six months of radiation, I lost hearing in my left ear. Within a year, I lost hearing in my right. By two years post-op, I could no longer work due to memory loss, difficulty with cognition, and executive dysfunction.

Eventually, I was diagnosed with Major Neurocognitive Disorder, Autism, ADHD, and a math disability. I'm now under active neurological evaluation to determine whether the Gamma Knife radiation — which research confirms can cause both cognitive decline and hearing loss — is the root cause.

For years, I begged doctors to help me understand what was happening to my brain. They told me it wasn’t serious. That I was overreacting. That it was stress.

It wasn’t.

Layers of Complexity: A Web of Diagnoses

The deeper you go into my medical history, the more tangled it becomes — but each piece matters. Here’s a brief look at the major players:

• Cerebral AVM (diagnosed 2018, resected 2024)

• Pulmonary Sarcoidosis (diagnosed 2020, in remission with annual PFT follow-ups)

• Hypermobile Ehlers-Danlos Syndrome (diagnosed 2022)

• POTS, Dysautonomia, Orthostatic Hypotension

• Gastroparesis, Chronic Nausea

• Mast Cell Activation Syndrome

• Epilepsy Partialis Continua (controlled on Keppra)

• Major Neurocognitive Disorder

• Autism, ADHD (Inattentive Type), PTSD

• Bilateral Sensorineural Hearing Loss

• Military Sexual Trauma Survivor

I use a central port to self-administer fluids twice per week to stay hydrated and prevent fainting. My medications and therapies are tightly coordinated and managed across multiple specialists.

But even with all of this, my recent experience with hyperparathyroidism shows how easy it is for critical care to be missed.

Where I Am Now — And What I Need

Right now, I need a thorough evaluation of my parathyroid function. I want answers, not assumptions. I want an Endocrinologist who understands that normal calcium doesn’t rule out parathyroid disease. I need someone who will look at my full history, not just a snapshot.

This isn’t just about one lab result. It’s about an entire system that repeatedly fails to see the bigger picture — and patients like me, who don’t fit into neat diagnostic boxes.

Thankfully, I’m still fighting. I have providers who listen. I have a neurologist who’s taking my cognitive issues seriously. I’m hopeful. But I also know that without constant advocacy — from me, from my support system, and from people like you — none of this moves forward.

For Anyone Reading This

Whether you're a fellow chronically ill person, a caregiver, a provider, or just someone trying to understand — thank you for reading. If you take away one thing from this, let it be this:

🟣 Listen to your body.

🟣 Advocate even when you're tired.

🟣 Trust your instincts — they might just save your life.

Stay tuned for a weekly Blog, Mondays at 1500 (3PM MST)

Stay resilient,

Frankie