Disconnected

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I stared at my CGM, the screen reflecting my own feelings lately. ??? The 3 question marks indicating that the receiver can’t establish a reading from the sensor, that it’s confused, lost…disconnected.

The week leading up to an endo appointment has become a time of reflection. I’m forced to look back on the past 3 months and evaluate how I feel I’ve done with managing my diabetes. At my appointment, my A1c number will give objective evidence to these months, but for now, it’s my own subjective assessment.

I don’t need to see my A1c number to know that the past 3 months have not been great. I see my glucose numbers each day, each hour, each minute. I can’t escape the numbers. But the feeling that I have is hard to describe. Unmotivated? Stuck? Apathetic? No it’s not quite that. It’s more…disconnected.

How do I become disconnected from a chronic disease that I literally think about constantly? From the medical devices that are physically connected to be 24/7? I’m not quite sure. Perhaps it’s just day after day, going through the motions, hoping for different outcomes, disappointed when it’s more of the same.

Maybe I’m burnt out. Maybe I have lost some motivation. Maybe I’m just tired. But after years of going to each appointment with the same goal and continuously falling short, something has to change.

But change takes work and it’s hard. Maybe it’s changing what I eat to avoid blood sugar spikes. But I love food, I don’t want to change. Maybe it’s being better about carb counting and bolusing on time, but I’ve tried, how is this time going to be different? Maybe it’s asking about the use of drugs for type 2 that have been shown to help type 1s, but I’m nervous about the side effects and using drugs that haven’t been well studied for type 1s. But most of all, maybe I’m afraid of failing. Because what if I try, like really try, and I still find myself in this same spot 3 months from now? What does that mean for my future? What does it mean when I’m ready to start a family and need to get my A1c much lower than where it is now? What if I can’t do it?

I know that I can’t let fear hold me back, I know that I can’t be afraid to try. And that “failing” isn’t really failing at all, it is just a lesson on what will work for me and what won’t, all ultimately getting me closer to my goal.

Hopefully my endo can help me rebuild these connections and face my fears. All I know is that I won’t succeed unless I’m willing to try.

No excuses

Ugh it’s been too long! I feel terrible for neglecting you for so long! A lot has happened that I want to tell you about, and I will…eventually. But I feel like I need to rewind to the first notable thing that happened since my last post.

About 2 months ago I had an appointment with my endocrinologist. This is not unusual, I have one every 3 months. But I knew this appointment would be different.

When I was younger, I used to say on the day of my endo appointment, “I’m going to the doctor to get yelled at today.” Now my doctor wouldn’t really yell at me, but I knew that I wasn’t doing that well and that they would in a nice and appropriate way, tell me to get my shit together.

I approached this appointment with a similar attitude. I was dreading the appointment. The previous three months were just not great. My numbers were all over the place, but mostly too high. Trust me I had my excuses ready…sicknesses, bent infusion sets, a bout of insomnia. But deep down I knew those really weren’t the reasons for three months of high numbers. It was more like apathy, laziness, and lack of discipline. I knew that really I only had myself to blame.

I got my A1c back. It was high. The highest its been in 3 years. In fact it was the same number that prompted me to start this blog in the first place and make some major changes.

I wasn’t surprised, but I was disheartened and disappointed.

My endo looked at me. “So what happened?”

My excuses were on the tip of my tongue. But I held back. I knew I had to take responsibility for my actions (and lack there of) and for the consequences of them.

“It’s just been a bad three months.”

She nodded. “Do you want to make some adjustments or do you want to try again?”

“I’ll try again.”

It wasn’t a good appointment. But I have to admit, in many ways I feel proud.

I’m proud of myself for not making excuses, I’m proud of myself for taking responsibility for my health. I’m proud of myself for only momentarily becoming discouraged, and instead vowing to “try again” and do better next time. I’m not proud of my A1c, but I know I’ll get back to what I was.

I found a quote online, “Every set back is a set up for a come back.” Well watch out, because I’m making a hell of a come back!

2015 Diabetes Blog Week Day 2- Keep it to yourself

Diabetes Blog Week

There’s one aspect of my diabetes that I’ve kept hidden, hidden from the Internet and online community, hidden from my friends and family, and in many ways, even hidden from myself. What have I hidden for so long?

My fear.

When I started this blog over a year ago, I stumbled on a blog post from Six Until Me from a couple years ago about PostSecret. Kerri asked her readers, “What would be your PostSecret submission?” A lot of people responded with different “secrets” that they had, but one really struck me. This anonymous poster’s secret is my own biggest fear, one that until now I have never told anyone.

“I feel that despite my best efforts, I will still end up suffering with complications, and I will have to live with the guilt of feeling like I did it to myself.”


This is probably the biggest internal struggle that I have. I know that keeping my blood sugar in control now will help me to avoid future complications. This is not a hard concept for me to understand. Yet, my A1c is consistently higher than I want it and higher than the recommended number to avoid complications. So the obvious answer is, lower it! Get it under control! It seems so easy, but it’s not. Every single day presents the struggle of keeping my numbers in range. Every. Single. Day. I have good days and I have bad, but I am trying.

I often wonder if I am too late, have I already done irreversible damage to my body? And who will I have to blame except myself if something does happen? Even with good control, it’s still quite possible to develop complications as I have read from other diabetic’s experiences. Then what? How do I explain that? How do you avoid the guilt and the blame and the “could have’s”? I know that I would be saying to myself, “you could have prevented this, you could have done more, you could have done better.” Maybe that isn’t true though.

In many ways I’m afraid of the future. But I hide that fear among my hope and optimism. I bury it under the long list of things that I have to do each day to manage my diabetes and live my life. I know that I can’t live my life in fear, I have to just live each day the best that I can and cross each complicated bridge when and if I get there.

This post is part of the 2015 Diabetes Blog Week. Today’s topic: Many of us share lots of aspects of our diabetes lives online for the world to see.  What are some of the aspects of diabetes that you choose to keep private from the internet?  Or from your family and friends?  Why is it important to keep it to yourself?

A1c Accuracy

“So how have you been?”

A seemingly innocent question asked by my endo as she sat down across from me. I never know quite how to answer this. I’ve been good. Really I have. My new job is going well, I’m enjoying living on my own in my new apartment, my weekends have been filled with fun events with my friends. I’ve been trying to get back into working out, I’ve been getting better at cooking and trying new healthy foods, things are good. But that’s not really what she wanted to know.

“I’ve been good.”

“How have your blood sugars been?”

Ah now we get to the real question.

Have they been high, low, are you having any problems, do you notice any patterns?”

“Shouldn’t you know?” I thought, assuming that she had at least looked at my graphs and A1c (which in fact she hadn’t since they were still being downloaded).

“They’ve been high lately, higher than I want, but I haven’t really noticed any patterns.”

“What about lows?”

“Yea I have them after the highs, probably from over correcting. Lots of roller coasters.”

We talked a little and made some adjustments and she got ready to wrap up the appointment.

“I was just wondering, what’s my A1c?”

“Oh I hadn’t even looked yet. (Ummm what, why not?”) It’s actually pretty good, 6.9.”

“Seriously? Are you sure?? That doesn’t make sense.” My doctor turned the screen so I could see it on the computer. I looked at her perplexed. “I’m shocked, are you sure that’s right?” It’s not that I didn’t believe that it could happen, after all almost exactly a year ago I was at 6.7, but I know what my blood sugars looked like then and I knew how they have been the past couple months, and something just wasn’t adding up. But I was hoping that maybe I was wrong. Maybe I was just remembering the worst of the past few months and in general I was doing pretty well. “I want a re-check,” I joked.

Yea I’m pretty surprised too, that doesn’t really make sense based on these graphs.”

I’m not going to lie, I kind of wanted my doctor to prove me wrong, to not agree with me. To point to some trend or something that showed that I wasn’t as off as I thought.

“We’ll have them test it again.”

In the 13 years that I’ve had diabetes and the over 50 A1c checks that I’ve had, I never really had a reason to doubt the accuracy of the test. But here I was, getting my first recheck. As I sat there waiting for the nurse to come back with the results I debated in my head whether it was better to be right or wrong in this situation. Right in that ordering another test was the correct decision, that the first result wasn’t accurate and that I know my numbers and my body. On the other hand, I was hoping that I was wrong. That I was doing better than I was giving myself credit for, that maybe my A1c was 6.9, a number I’ve been working to get back to.

The nurse walked in and I looked up expectantly.

“It’s 7.3.”

“Yea that makes more sense.”

Slightly disappointed that I wasn’t 6.9, I was still okay with that number. It’s been where I’ve been stuck at for the past 9 months so at least I wasn’t doing any worse. Okay, 7.3. it’s not my best, but it’s not my worst. I said the number over and over in my head…and then I let it go. I’m trying to use my numbers to guide me, but not get caught up in them. So instead, I thought about what I need to do different between now and my next appointment in 3 months. Rather than focus on the number itself, I thought about what I can do so that the next time I see that 6.9, I won’t doubt its accuracy.