In Memory of My Mother, A Nurse, Teacher, and Medical Warrior
When most people think of diabetes, they imagine something manageable with some lifestyle tweaks, maybe a pill or two, and a few finger pricks. What they don’t picture is feeding tubes, metabolic crises, and impossible choices between treating one condition and harming another.
But that was my mother’s reality. And in many ways, it still echoes in my own.
My mother lived with Type 2 Diabetes and Acute Intermittent Porphyria (AIP), a rare, inherited disorder that affects the way the body produces heme, a critical component in blood. AIP isn’t just rare; it’s dangerous, misunderstood, and often dismissed until it’s too late. For her, it wasn’t just a part of her chart, it was the condition that ultimately claimed her life, not because it was untreatable, but because she was caught in a medical no-man’s-land between two conditions that contradict each other.
A Battle on Two Fronts
She was a nurse, educator, and former director of nursing. She knew what she was doing. And she did it well. She managed her Type 2 Diabetes without insulin or diabetic medications, controlling it solely through diet and discipline. Her A1C numbers? Between 4.2 and 5.2 for over a decade.
To any doctor unfamiliar with her full medical picture, she was a diabetic success story.
But behind those numbers was a grueling daily tightrope act. One that required carefully controlled tube feeding, because in 2003, she lost the ability to swallow and lived with a G-tube for the rest of her life.
Let that sink in: she managed her diabetes without meds, while feeding through a tube, all while battling a rare metabolic disorder that punishes the very strategies used to control blood sugar.
AIP Doesn’t Play Fair
Acute Intermittent Porphyria is unpredictable. Fasting can trigger an attack. Low-carb diets? Dangerous. High stress? Risky. Many standard medications? Absolutely off-limits. And the symptoms? Everything from nerve pain to seizures to paralysis. It’s not something you can ignore.
But diabetes, as many know, demands consistency. Control. Precision. Often, lowering carb intake and maintaining tight glucose levels are the pillars of diabetes management.
The cruel irony is that what helped her diabetes, harmed her porphyria. And the medical system wasn’t equipped to handle that contradiction.
When Doing Everything “Right” Still Isn’t Enough
She knew the risks. She understood the metabolic clash better than most physicians. But she was trying to live. To thrive. To keep control of something in a body that was fighting on two fronts.
And in the end, the system failed her. Her A1C looked great. Her blood sugar was under control. She was a “model patient” by diabetic standards. But she died because her care couldn’t account for the needs of both conditions at once.
The lesson here is painful, but necessary: we can’t just treat lab numbers. We have to treat the whole person.
The Legacy She Left Me
I live with Type 1 Diabetes and AIP myself. I know that same tightrope. I know how quickly things can spiral when one side gets more attention than the other. And I know how exhausting it is to explain, again and again, why standard diabetic advice could hospitalize me.
So when someone online says, “My A1C is normal now, do I still have diabetes?”, I give them the short answer I always use:
“Once a diabetic, always a diabetic. You’re just considered controlled.”
But the real answer? It’s more complicated. Because numbers don’t tell the whole story. And sometimes, they hide the most important parts.
For Diabetes Awareness Month
This month, and every month, we need to talk about the complex cases. The ones that don’t fit into tidy treatment plans. The ones where rare diseases clash with common ones. The ones where the system isn’t built to support the full picture.
We need to honor those who live in the overlap, and those who are no longer here because the medical world didn’t understand what they were truly navigating.
This post is for my mother. And for everyone living between the numbers.
If you’re a medical professional reading this: please, ask more questions. Don’t stop at “controlled.” Dig deeper. And if you’re living with overlapping diagnoses: your struggle is real, and you’re not alone.