Wrong-o.

One of the things I remember the most about my diagnosis was how simple it was.

When Mom and I were finally put in an exam room and they started doing the barrage of tests that seems to come with every time I go to the ER (which is not often/which is why I just don’t go in the first place), I had a pretty good idea of what the result was going to be.

The back story: I had already been witness to two T1 diagnoses in my life. My mother was diagnosed in 1998 at the age of 36, and the older of my two brothers was diagnosed in 2001 at the age of 11. I remember the family education and long hospital stays that came with both. I remember how my mother was in DKA. I especially remember watching my brother practice injections on some poor innocent orange. The most crucial memory I have, however, is of the moment when my mother tested my brother’s BG for the first time, in the corner of our kitchen, and then crying when she saw the readout. It was on her own meter, and it was following a week of really erratic, disorganized, and aggressive behavior from a usually pleasant and well-behaved little boy. I think she knew what the result was going to be, but was hoping that her intuition was wrong. (It never is.)

9 years later, there I was, in the same position. Standing in the corner while the meter counted down, considering the possibilities. (I’d like to say that a thousand things were running through my mind, but all I can remember is being angry that Mom wouldn’t let me eat and I. Was. Starving.)

There were no tears for my diagnosis.

In fact, the PA in the emergency room didn’t seem to think that it was a big deal at all. He asked about family history, and then told us quite plainly that, “adults don’t get Type 1.” Wait, what?! Hm. They handed me orders to see my PCP in the morning, with a whispered urging from my wonderful nurse to “seek a second opinion because that guy doesn’t know what he’s talking about.” I owe him for his honesty.

I was reminded of just that when I read this article the other day: Wrong Call: The Trouble Diagnosing Diabetes, following a number of individuals who were told ridiculous things like, “adults don’t get Type 1.” Apparently I’m not the only one. Wow. And then I thought about this: since I had such a slow onset, how long would a true diagnosis have taken/how sick would I have become without my mother urging the doctor for more tests? I mean, I am grateful that my PCP had the foresight to give me a BG meter and the minimal education, but it felt almost as though very few even cared about me, the person behind the diabetes. There was virtually no education available for someone who was coming into the disease after 20+ years without it. I grew up with my brother’s and my mother’s diabetes, but I had no clue how to feel about my own. How many other people were in similar situations?

So, what did I do? I took to the internet.

It was there, through some digging, that I managed to find a handful of blogs by people living with diabetes. And not just people who had been diagnosed as children, but people who had been diagnosed as adults, who were having the same problems that I was! Those blogs led to me finding the DOC, a community that, in my opinion, is an absolutely necessary resource for anyone living with this disease in all of its many forms and manifestations. I am so so grateful for the wealth of knowledge available at my fingertips (my poor, abused, fingertips).

And then, the other day, I saw this video from the You Can Do This Project pop up on my newsfeed: We Can Do This: Vol. 1. I can’t believe that I’ve never seen it before (Vol. 2 is apparently forthcoming. Can’t wait!). It was like my own thoughts were coming out of someone else’s mouth. Maybe there is hope that there will someday be as great a wealth of knowledge for T1s diagnosed as adults as there is for the loved ones and caregivers of  T1s diagnosed as children. I was also reminded of why I write down my thoughts and talk about my disease whenever the opportunity presents itself: because I want people to know. It’s real, it’s here, and it’s mine. I live with it, and I intend on living with it for a long time. (Joslin 50-year medal, here I come!)

So that’s why I do this, sharing my thoughts and experiences: so that others can learn. Because, really, what is the point of having a community of like-minded individuals enduring similar circumstances if we can’t learn from each other? Here’s to the perpetuation of knowledge! 🙂

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One thought on “Wrong-o.

  1. A big KUDOS to your mom. I self advocated myself into a correct diagnosis and would still be being treated as a type 2 if I hadn’t been pushy. Get this, I asked my PCP in May to do four tests to rule out or confirm type 1. She didn’t want to do them because they were “expensive”. I saw an endocrinologist last week and she did three of them. And guess what? I’m a 37 year old woman just diagnosed with Type 1 diabetes. Reaching out, whether it’s thru writing a blog or reading someone else’s is so important. We need to stay connected with others who understand what we are going through.

    YCDT is awesome isn’t it?

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