Rob Hope

For those of you aren’t aware, I’ve had Type II Diabetes since before my diagnosis in 2002.   That’s 16 years so far of medications, finger pricks, blood tests, and constant stress in the back of my mind about my health.   I’m medically disposed to such a disease, with my New England food tastes and diet and a genetic disposition towards conditions such as this.   For reference, on the day I was diagnosed, my blood sugar level was 459.  Normal is 120.   So suffice it to say I’ve got it pretty bad in that regard.

For the first 12 years of my diagnosis, I treated my condition with a combination of moderate diet control (I struggle with this to this day, I admit), monitoring of my blood sugar level through finger prick tests 3-4 times a day, and a variety of different medications with a litany of side effects, including various bathroom issues I won’t elaborate on, and a general feeling of lethargy and discomfort.   Not to mention some of the worst nighttime leg cramps I’ve ever experienced.  It’s no fun going from dream sleep to standing next to your bed stretching out a locked up calf in 2 seconds flat.

By 2014 I’d stopped taking my medications regularly.  I realize most people will question this decision but I felt so much better when not on them.  The cramps stopped, the various other issues stopped, and I felt healthy and normal.  The medications that treated my diabetes that kept me healthy simply made me feel sick all the time.  I was growing increasingly frustrated with my inability to control my blood sugar in the absence of my medications and began to not care about that either.   I generally consider myself to be an intelligent person, so I understand the consequences of my decision at the time, but to be fair, it was an emotional one built around 10+ years of trying to manage a disease the required me to be constantly vigilant and feel like I just wanted to be in bed all the time.

In 2015 I was running an A1C of over 12, twice the normal level.  I asked my primary care physician to recommend a specialist and he referred me to a clinic in Santa Barbara for treatment.   My new specialist approached my mental state, which was beyond frustration at this point, by simply asking me what I felt I needed to do to make things better.    We agreed to immediately go off all of the medications that were making me feel ill (for the record, metformin is an evil thing) and switch to insulin for full treatment.   That helped a great deal, getting back down to an A1C of 7.5 within six months.  Additionally, I’ve tried several new medications, some that use the kidneys or liver to filter out high blood sugars, with pretty successful results.

The biggest frustration though was my inability to determine how successful I was in managing my illness.   Let’s take the finger prick blood tests as an example.   I’m about to have dinner, I take my blood, and it’s 160.   I’m going to decide to inject insulin, and I need to decide how much.   How do I decide?  160 as a number doesn’t mean anything.  It doesn’t tell me if I’m going up or down.  It has no context.   So what do I do now?

On top of that, let’s say I’m at 185, but I think I’ve had a good day overall.  I ate well in the morning, woke up at 115, and I’ve been doing well (or so I thought).  I would expect to be maybe 130, see 185, and wonder how that happened, and get super frustrated at what looks like a failure.   Running into that day after day gets very discouraging and frustrating.   You wonder why you’re trying at all.

Which brings me to the biggest change in my treatment.  I agreed to try a continuous glucose monitor, an injectable monitoring device that provides real time constant feedback on where my blood sugar levels are.  I currently use the G5 by Dexcom.  It’s the little square device in the lower left of this image.

So, first things first.   Applying this device is fairly simple.  It is no more or less painful than an insulin injection and uses medical adhesive to attach to my left side.   It works by injecting a small, needle-thin sensor underneath the skin.  Once there, I barely notice it at all, until it’s time to remove it, which is much like any band aid.  It’s impossible to notice underneath my shirt and very easy to forget.

What it gives in return is clarity on where I am at any given moment.   It takes that 185 I had before and tells me two things.   First, whether I am going up or down, and second, how quickly that transition is happening.   A 185 coming down quickly from a high number due to a big lunch is a big difference between a slow rise up to 185 that may not level off any time soon.  The device checks my readings every couple of minutes, and I can spot trends in my blood sugar level immediately.

This allows me to thoughtfully examine my daily routine.  I can watch my sugar levels after meals, or after snacks, and gain an understanding of the impact of certain foods on my bloodstream   In addition, I can intelligently target my insulin levels when I do inject before meals.  Before, 185 might mean 10 units of medication.   But now, a 185 on its way down might mean 5, but a 185 that’s either level or rising right before I sit down to dinner at Olive Garden might mean 20 units (or a salad instead of pasta).    Trends allow me to change behavior on the fly, and react quickly to changes in my blood levels.   It’s an amount of control you don’t have when only checking a few times a day, and a way to make sure you have a firm grip on your situation and control over what the number means.

This reduced my stress and frustration level significantly.

Further, there’s an app for my phone that I sync to the device.  This not only allows me to track levels, but it will alarm when I go out of a healthy range.   There was a period of time where I would have instances of very low blood sugar at night.   I’d wake up shaking and sweaty and have to stumble downstairs to grab a drink and a snack to counteract the low blood sugar.   But the device will set off an alarm if I start to fall too low, and can warn me before it gets too bad…getting me out of bed before I become possibly too weak to move.   You can also set alarms on highs if you want to be notified that you might need an injection or maybe eat less.   So with a glance, I can check my phone and see where I am at at any point of the day.

There have been a few challenges.  In theory the device can go anywhere on either side of the abdomen, and you are supposed to rotate its location.   But I’m a bit on the hairy side as far as body hair, and for some reason, it never stays attached to my right side, so I keep it always on my left.   There was the time I hit it getting out of the van and ripped it off, but beyond the surprise, that was no worse than a bad band aid removal.

It says it is waterproof but I haven’t tried that yet.  I shower with it but take it off when I swim, which limits my swimming to one day on the weekend.   And finally, it’s not supposed to go through any sort of MRI or metal detector, so I don’t take it with me when I travel.   I had a notably bad incident in Austin trying to wear it through TSA, and it’s not necessarily worth the trouble to try and get it through security.

But to be clear, in particular if you are accustomed to giving yourself injections, there’s no reason not to try a CGM.  I can tell you for sure it’s made managing my disease much more tolerable, and when I do have periods of frustration, it’s a lot easier to slap a device back on and get back on the routine.   It’s reduced my overall blood sugar levels by 60% since I’ve started using it.  I recommend it for sure.

All images copyright Dexcom (https://www.dexcom.com/)