Tears of Joy

There have been many times that managing my type 1 diabetes has led to tears. I’ve cried out of pain, I’ve cried out of frustration, I’ve cried out of fear, but this is the first time I legitimately cried out of joy.

Before I get to that, let me explain what led to this point.

Two years ago, I made the decision to become an early adopter of the medtronic 670G insulin pump. At that point I had been using a Dexcom sensor with an older medtronic pump. But I was excited about the hybrid closed loop system, I thought that the ability of the pump to adjust insulin doses on its own based on blood sugar numbers could be incredibly beneficial for me. So I gave up my beloved Dexcom sensor and moved over to the medtronic Guardian sensor. This has not been a smooth road. I’ve been pretty vocal with my frustrations in my posts here and here. Two years later, it has gotten a little IMG_3370better, but not much. Sensors rarely last the 7 days, almost every time I inserted a new sensor, it would just show my blood sugar dropping even when it wasnt, eventually rejecting the calbriations and telling me to change the sensor. Every day would require multiple calibrations with misleading arrows, causing even greater roller coaster blood sugars. I admit that automode was useful, but I would only end up being in automode less than half the time. The other 50% of the time was incredibly frustrating.

Recently, I’ve started working with my doctors for much tighter blood sugar control. As part of this effort, my doctors advised me not to use automode, because the target blood sugar of automode is higher than the target they want to aim for. Since I wasn’t going to be using automode, my doctor brought up the idea of switching back to the Dexcom sensor since the pump wouldn’t be communicating with the sensor. I would be going back to a sensor that I really liked, a more accurate and longer lasting sensor that could integrate with an iPhone and apple watch, but not my insulin pump. I loved this idea, and a month later my new Dexcom G6 system arrived. I was so excited!

A lot has changed since the last Dexcom system I used. The inserter is now an automatic inserter, the handheld device is now a touchscreen device of a different shape, and like I mentioned before, it can integrate with apple devices like a phone and watch. And more than that, it no longer requires finger stick calibrations! I took the sensor out of the box, following the directions to set it up and insert it. I pressed the button, barely feeling the needle piercing my skin. But as I pulled away the inserter, it started gushing blood, filling the piece of plastic and overflowing down my stomach. This was not good.

I called up Dexcom and explained the situation. They told me to take out the sensor, that the amount of blood could interfere with the readings. A little shaken, I waited until the next day to try again. This time, I pressed the button, but the inserter wouldn’t disengage from the plastic piece on my stomach. I kept pulling, but it wouldn’t budge. I called up Dexcom again and explained the situation. They told me to take the sensor compeltely off and we determined that the needle never retracted, so it didn’t allow the inserter to be removed. I was assured that this occassionally happens, but it wasn’t anything I did wrong, and they’d send a replacement. After two failed sensor insertions, I was starting to feel a little discouraged. Was I destined for a lifetime of sensor issues?? I chalked it up to bad luck and tried for the third time. And it worked! Third time was the charm.

After the 2-hour warm-up completed, a blood sugar reading appeared. It didn’t even need a finger prick or calibration! I was a little skeptical after all the issues I’ve had with my medtronic sensor so I tested my blood sugar from my finger. I stared down at the number in shock. It was only 1 point off from the sensor! IIMG_3461 couldn’t believe how close they were. And then I lost it, I just started crying. It was like this weight I had been carrying around for 2 years was suddenly lifted. Like I had been holding my breath and I could finally breathe. I couldn’t believe the relief I felt, I hadn’t even known it was negatively affecting me so much.

I’m only 4 days into this first new sensor, and it’s not perfect. I’ve had one time where I felt low and tested low, but the sensor didn’t reflect that. But after a quick calibration, it fixed it. But already, I can tell a HUGE improvement and difference. And the convienience of being able to just glance at my watch and see my blood sugar is amazing. Without automode, I have been experiencing more low blood sugars, but with the improved accuracy and reliability of this sensor, I find that I’m over correcting less and able to anticipate lows more accurately.

It is a little ironic to not be using the insulin pump that is the latest and greatest technology with the hybrid closed loop system, but for my goals right now and my mental wellbeing, I’m so happy with this decision to switch back to the Dexcom system. Hopefully I feel the same way in a few months, I’ll keep you updated 🙂


Missing puzzle pieces

I’ve felt like Goldilocks lately. Although maybe a Goldilocks with brown curly hair and way less luck.

I’m starting to have issues with my new endo. Again, the issues that I am having are less about the specific doctors and more about my frustrations with doctor’s and the office not utilizing the technologies that are available to them to their full potential. And misusing the ones that are.

Like most T1Ds, I have a lot of devices that carry a lot of data. And those devices are able to download their information when connected to a computer. But you get slightly different information from my pump (finger prick glucose numbers and insulin delivery amounts) than from my CGM (glucose numbers from the sensor) and I don’t always think that the CGM is the most accurate, especially at the beginning or end of the cycle I wear it.

At my new endo office, my doctor downloads my CGM and pulls up a graph of the last week. She doesn’t take my pump or meter, in fact, I once asked why not and she wasn’t even sure she had the right equipment to download from the pump. I completely trust that my doctor knows what she is doing and her recommendations do make sense. But I’m often left wondering if the recommendations would be the same if we were looking at 2 or 3 weeks worth of data or even looking at glucose numbers from my meter (which are on my pump) in addition to my CGM.

On one hand, I’m grateful. I remember when I was first diagnosed being handed a little log book that I would have to manually write in my glucose numbers. But on the other hand, I’m frustrated with the way things are. I want integration. Maybe it’s time that I align my pump and CGM to compatible companies. Then at least all 3 of my devices would be talking to each other for a more complete picture. But I’m lazy and don’t want to learn a whole new pump or CGM system when I’m generally satisfied with both separately.

And while part of the responsibility is fully on me as the patient, another part is on the doctor and the offices to keep up with changing technologies so that they are effectively and accurately using the data that is available to them.

I feel like my diabetes is a puzzle and my doctor is only looking at a handful of pieces when telling me what to change. You’re looking at the trends in my blood sugars, but you’re not looking at my boluses throughout the day. You’re not looking at the foods I’m eating (which I have been tracking in a separate app for the past 6 weeks) or exactly when I eat them (besides asking me generally when I eat). You’re not looking at when I’m exercising and what kind of exercise I’m doing, when my cycle is, when I got sick, and even when I was feeling extra stressed. My numbers are all important, but alone, they lose some of their meaning. You’re looking at my blood sugars essentially in isolation because:

A) that’s the data that’s available to you
B) we only have a finite time together so you aren’t able to ask me about all these other factors
C) there is no universally used platform that can integrate this information easily for you

I’m frustrated. But I’m also hopeful. I know that today, my data is more available, accessible, and interpretable than it was 10 years ago. But I know we have a ways to go before every office has the equipment, the skill and the motivation to look at the whole puzzle for every one of their patients, and not just a few pieces.