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August 27, 2014
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Misdiagnosed?


When I was a kid, I remember my Nana Betty having to give insulin some Christmases. She would discretely lift her blouse and inject into her belly. This was "before." Before I knew diabetes. Before it became my unwelcome traveling companion. Other Christmases, other Holidays, I wouldn't see her inject at all.

After. After diabetes joined me on the road of my life. After insulin became something I truly NEED, I asked my father about my Nana. "Sometimes, I see her give insulin," I said, "Sometimes I don't, why doesn't she give it all the time?"

"Well," Dad responded, "Nana has type 2 diabetes, it's different than what you have, sometimes she can be on pills."

"Hm. OK, I guess."

My grandmother's road with diabetes was not easy one. She lost most of the vision in her right eye to retinopathy, was on kidney dialysis for the last several years of her life, and had at least one stroke. Diabetes took her from us young. I remember in the final days of her life, rubbing lotion on her feet, which had become very dry from the arid hospital air. I remember thinking, "I've never hated diabetes more," as I watched it claim her.

Thing is, in subsequent years, my dad and I have discussed how Nana's diabetes was almost certainly misdiagnosed. My grandmother was in great physical shape; she walked to work daily, she ate well, and her two jobs kept her on her feet for most of her days. She was diagnosed at just 32 years old. There was no history of type 2 diabetes in her family. But, she was not a child, and back in the 60s, when she was diagnosed, adults didn't get "juvenile diabetes." In the early years, she was on an oral medication and watched her diet even more carefully than she had before diagnosis.

As the years went on, the oral medications stopped working altogether and her doctors, as my father and his siblings remember it, reluctantly put her on insulin injections. After a year of great control, the doctors decided she didn't need to be on insulin anymore. Huh? So, it was back to oral medications, which threw her diabetes into a mess. Only after she went into DKA, three months into the oral medication experiment (number 2), did they put her back on injections. My Aunt, the oldest of her kids, remembers one doctor suggesting she was "brittle diabetic," which in my experience translates to "hey, you might have type 1."

Still, the cycle of injections, in good control for awhile, back to oral medications went on until my grandmother got truly sick in the early 1990s. I believe that she was absolutely misdiagnosed. Knowing many adults diagnosed with type 1 after thirty and understanding the evolution of knowledge about both types in the past several decades, I can see how it would easily have happened.

My grandmother never saw an endocrinologist, she was treated by a primary care doctor in rural hospitals, and knew no one with diabetes until my diagnosis in 1982. My dad said it was only after I was diagnosed that he even considered that Nana's diabetes might not be what it had seemed - and by then it was probably too late. For twenty years, her a1c had bounced up and down from 8.0 to 18.0, she had been out of control more than in control, the first signs of retinopathy had already crept up in her eyes, and her blood pressure was exhibiting the spikes that can signal issues with the kidneys. She was constantly being blamed for going off-diet or not taking her oral medications when her a1cs would come back off the charts and she would be encouraged to go home and "try harder." I cannot imagine the frustration she must have felt.

You'd never have known how sick she must have felt, though. Not even a little. My grandmother always looked beautiful. Make up perfect, not a hair out of place, bright blue eyes, lovely clothing, and a gorgeous smile. She lit every room she was in. You would never have known the war being waged inside of her, you would never have known she was probably not getting the appropriate treatment and the tools she so desperately needed.

I think about my Nana every day and I thank my lucky stars to have been diagnosed properly and gifted the tools I need to make the most of this life.

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Megan Holmes
Megan Holmes Megan was diagnosed in 2009 with Type I. As an RN, she was familiar with the medical side of her diagnosis; learning to be a good patient on the other hand, was and continues to be the challenge of her day to day life.   (Read More)
Michelle Kowalski
Michelle Kowalski Michelle Kowalski, a writer, editor and photography hobbiest living in Phoenix, was diagnosed with Type 2 diabetes in February 2005. In January 2008, as part of her quest to start on an insulin pump, Michelle learned that she actually has type 1 diabetes.   (Read More)
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