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! 🙂

Advertisements

On complications and being cured.

I just rolled in from a really great cast party with my friends from Carmen, the opera I wrapped tonight. (Little known fact about me: I sing opera for fun.) I can’t even tell you how much wine I had, just that it kept flowing as long as we were laughing and telling stories, and that was basically from about 11PM until 4:30AM-ish. I was in a huge rush to get out of the house earlier, having taken a nap and put myself very much behind schedule, and I forgot the little pink bag that holds my D-supplies. Duhhh, stupid. I was slightly on edge all night wondering what my sugar could be, as I should have been. Thank goodness I wear a pump, otherwise I don’t know what I would do. That little thing keeps me so consistent; I love it so so very much.

Long story short, I just tested my BG a few moments ago, and it was 135. Wow, I thought. That’s not bad at all. I didn’t feel the need to bolus all night. Am I cured? I had a relatively good endo visit the other day; found out my A1c is 6.3, and my kidneys, liver, and thyroid are all in really good shape. Dr. Z couldn’t stop saying how happy he was with my progress, and it made me feel good as well. I mean, we try so hard to live normal lives and, yeah, your A1c/BG readings are just numbers, but just hearing that everything else is working fine made me feel so warm and fuzzy inside. I know I’m doing a good job (although, granted, some days are better than others), but it sure is nice to hear someone else say it as well. I may have a bum pancreas, but it seems like everything else is in good working order, and hearing that is music to my ears.

I don’t look forward to having complications in the future, but I embrace the fact that they may become an eventuality. I’ve already had one scare this year with a spot on my retina, which turned out to be nothing anyhow (whew), and that was enough for me. But I see the issues that my mother is having, and I see the issues that her cousin is having, and I wonder, what will be my experience? Dr. Z has assured me that if I keep managing myself as well as I am right now, I will have few, if any, complications. But there is always that what if — what if something does go wrong? What if I develop thyroid disease? What if my kidneys fail? What if, what if, what if.

This brings to mind another possibility — what if a cure becomes available in the near future? Will that be something that I will be interested in? Will I be so used to this lifestyle that I won’t want to go back to “the way things were?” Will I even remember what that was like?

I don’t like to think of my life before D because it was a really difficult/challenging time for me. I was kind of lost, in every sense of the word. I didn’t know what the heck I wanted to do with my life. At all. D came at just the right time, a time when I needed something to really live for. In a way, D saved me. It showed me how fragile life is, how easy it is to lose the things that you take for granted. But it also has taught me many things — how to be flexible, how to be understanding and, most of all, how to take care of myself. Because, let’s be honest, I’m the only “me” that I have. But the most important thing was that it showed me that the budding passion I had for nursing care wasn’t just a passing fancy. I finally understood that being a nurse what was what I was destined to do — because I needed to share my experience with others. My diagnosis was the push I needed to lead me down the road to my life’s work, and I honestly don’t know where I would be without D.

It’s so easy to think of a diabetes diagnosis as the end of the world — it certainly feels that way when you’re sitting in the ER and the nurse looks at you with sad eyes and you just know. I was the third one in my immediate family to go through that experience, and I never thought it could happen to me. But it did, and I’m grateful. So grateful. I do have days where I’d like to return to sender but, on the other hand, I also have days when I feel like Superwoman because I know that I’m strong, and that I can do this and, most importantly, that I am certainly not alone. I would be loathe to be cured of the one thing that has truly helped me find myself.

As I celebrate my 25th birthday and soon my 2nd diaversary, I find that I don’t really want to think about who I would be had things turned out differently. I just don’t. Maybe I’m in the minority when I say that I like my D life, but I don’t care. I wouldn’t have wanted things to turn out any other way. 🙂