Category Archives: CGM

The view from the top

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Two months ago, I had an appointment with a new endocrinologist. Back with my old endo, I made the decision to try for much tighter blood sugar control. Part of that decision involved getting off auto mode, switching to the Dexcom sensor, and having more frequent visits and check-ins with my health care team.

After years of my a1c hovering around 7, I wanted it to finally make it into the 6’s. And it happened! Not only was it in the 6’s, it was in the lower half of the 6’s. I couldn’t believe it!

The downside of this being a brand new doctor is that she didn’t know me, or my struggle to bring it down over the many years. She didn’t recognize what a huge accomplishment this was for me. I had imagined this exact moment for so long, I remember thinking, would I cry of happiness? Would my doctor share my excitement? Not that she wasn’t pleased, but the conversation quickly continued. And it continued to a much heavier topic. I wanted to know more about pregnancy and type 1 diabetes because at some point, when we’re ready, I want to start a family. And I wanted to know what that journey would look like for me so I could be prepared- physically, mentally, and emotionally. As one might expect, it will be a lot of work. Constant monitoring, adjusting, and tracking to keep blood sugars in a safe range for 9 months. My feelings of triumph and accomplishment were quickly overtaken by feelings of anxiety and fear. I had accomplished my first goal, getting into the 6’s, but suddenly there was so much more ahead of me when I decide to go down this path. It was daunting.

This whole experience reminded me of an illustration by one of my favorite Instagram artists/doodlers, decade2doodles.

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Here I was at the top of that first hilltop and instead of taking a moment to realize how far I had come, to celebrate that first victory, I was already looking ahead at how much more I needed to climb.

“When you’re scared about what’s next, find confidence in what came before.” This is what the artist had written below this post. The first time I saw this illustration, I don’t know if I even read what was below it, I related enough to the image itself. But the truth is, I look at this journey of pregnancy with type 1 diabetes and I am terrified! What if I can’t keep such strict blood sugar control? The risks with pregnancy are scary enough without adding in type 1 diabetes.

Now with another appointment next week, I’m afraid that I have taken a few steps backwards and I know my a1c will reflect that. “…find confidence in what came before.” I’m working on that confidence part. I got my a1c down to the 6’s, if I did that once, I know I’m capable of doing it again, of continuing to make improvements, and maintaining that level. And when I’m ready to climb that second part of the mountain and start a family, I know I’ll have the support of great doctors, family, and friends helping me along the way.

 

Tears of Joy

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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 🙂

 

670 G- the frustrating user experience

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It’s now been about 9 months with my medtronic 670 G insulin pump. When it’s in automode, for the most part it’s pretty good. I’ve had less lows and less drastic spikes. I’ve also gotten better at pre-bolusing for my meals which has made a big difference.

In my current job, I’ve been thinking a lot about the users of our products. Thinking about the user’s needs and their experience using our product. I feel like I spend so much time thinking about other users that I forget that I too am a user. I am a user of the insulin pump product. Unlike the products I work on where we have to think about how we can engage the user and get them to come back, I have to use my insulin pump and continue using it (or I suppose switch to injections or switch companies). But there had to be people who thought about my experience using the pump, how to design the menus and buttons to make it as simple and intuitive as possible to use. And they needed to weigh the user’s needs and preferences against regulatory systems like the FDA and safety and compliance guidelines. It can be a hard line to walk. There’s a lot they did well, but yes, there is a lot of room for improvement.

There are certain features of this pump that continue to annoy and frustrate me. Maybe someone from medtronic will read this and can make recommendations for future versions.

Silencing alarms. To me, the point of silencing alerts is so that you do not hear or feel an alert. I understand the reasoning for not being able to silence low blood sugar alerts, that’s okay with me, but I would assume every other alert should not be vibrating if it’s on silent. This is not the case. From the user 670 G user manual:

“Alert Silence does not silence Auto Mode Exit, Auto Mode Exit
High SG, Auto Mode Off, and Low SG XX mg/dL (XX represents 50 mg/dL
or below) alerts. These are both based on set glucose thresholds and
cannot be silenced.”

Like I said, for safety reasons I understand why the Low alerts bypass the alert silence, but I don’t understand the auto mode exit. The pump is still working.

Automode exit. This brings up more frustrations with being kicked out of automode. For the most part, the reasons why you get kicked out of automode make sense. Although annoying, I do understand being kicked out when you’re over 300 for an hour or 250 for 3 hours. Being kicked out because you’re at your max basal delivery for 4 hours, I suppose I understand, probably good to check why the number isn’t coming down. But being kicked out for min delivery is an interesting one. I’ve been kicked out for running a blood sugar that was close to 85-90 for hours, I wasn’t requiring any basal insulin and so eventually it kicked me out, but my first thought was, why is having an amazing blood sugar kicking me out of the useful feature of the pump?

The sensor. I should be more specific about this one, really my biggest pet peeve with the sensor is that it only consistently works well for a few of the 7 days, and only lasting 7 days is annoying to begin with. But a more specific annoyance with the sensor is that I could have a sensor that is working really well on the 7th day and then the sensor expires. One would think that if the sensor was working fine before the expiration, that if you just restart the same sensor, it should work fine after. But it’s like the sensor sits there and goes “nah uh, don’t try to trick me, I know better” and will still tell you that it’s expired and needs to be replaced. A couple times I have gotten around this by disconnecting the sensor and charging it for a couple hours, and then reconnecting it as if it’s a new sensor. But even when this happens, it still doesn’t work as well as it did pre-expiration just a few hours earlier. Whether this issue is intentional or not, it makes me wonder if these companies could be designing a sensor that lasts significantly longer, but choose not to because it means we as patients and customers need to buy more sensors. Kind of how most electronics these days are not built to last, they’re built to last for a finite amount of time and then be replaced.

So any pump product designers and engineers and user experience people that stumble across this blog post, just a few things to keep in mind as you design and build your insulin pumps, especially as more and more turn to hybrid or fully closed loop systems. 🙂

Out-of-sync

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I remember when I was first diagnosed, the doctor said to me, you’re going to know your body extremely well, better than a lot of people who don’t have diabetes know their own bodies. She was referring to the fact that diabetics are constantly attuned to how they’re feeling, and noticing if anything feels different or off. Not to say that other people aren’t also aware of how their body feels and reacts. But over time, you get to know yourself and your body so well that you can pretty accurately guess what your blood sugar will be before checking.

Most of the time, I’m pretty in sync with my body and how I’m feeling. “I think I’m dropping low” usually is followed by the buzzing of my pump telling me that this is in fact true. But there are occasions when this balance gets out of whack. And when it does, it’s definitely a disorienting experience, when how you’re feeling doesn’t match to what you’re used to. This has happened to me a few times recently.

The most recent example happened this week. I was on my way to speak on an alumni panel for the undergrad psych department for students interested in the field of public health, talking about my career path and how I use my psych degree in my work. Although I’ve done some public speaking arrangements, I still get anxious before hand. As I walked towards the building, I could feel my heart pounding, my hands sweating. “Am I nervous or am I low?” It’s a question I was used to asking, I remember having the same feeling before job interviews or big presentations. I checked my CGM, it was right around 100. Just nerves.

I’ve learned that any time I use my inhaler, after about 10-15 minutes, my body starts to feel like it’s low. My hands get shaky, my heart beats faster. The first few times it happened I was convinced I had low blood sugar, it was the only time I had experienced the same symptoms so suddenly. But when I checked my blood sugar, it wasn’t low. Now I know to expect this, but even so, it’s still a confusing feeling.

Sometimes in my bootcamp exercise class, when the workout is extra intense, there’s this moment where I have to ask myself, am I struggling because I’m tired and this is a difficult workout or am I low and lacking the energy I need for this? I always stop and check my blood sugar. Usually I am in fact low, or dropping low, but sometimes my blood sugar is fine, and it’s just an exhausting and challenging workout. Sometimes it’s hard to tell the difference.

Finally, usually a tip off that my blood sugar is high is when I have to go to the bathroom more often than usual. So when this happens for other reasons like too much coffee or staying extra hydrated, the thought always crosses my mind: Is this normal or is my blood sugar high?

I definitely think that being familiar with how your body typically feels and reacts is beneficial for anyone. It can help you know when something is wrong sooner if you’re paying attention and it can help you make adjustments if you notice that your body is reacting poorly to something you’re doing or eating, for example. But it’s impossible to be correct 100% of the time, which is why I’ve learned to anticipate situations like the ones above where what I feel might not reflect my actual blood sugar. Then at least if I am wrong, I’m not caught completely off-guard.

Bedtime rituals

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One of the tips that the National Sleep Foundation recommends for a good night sleep is to have a relaxing bedtime ritual. It’s meant to serve as a type of buffer to separate your sleep time from the rest of your busy day and to signal to your body that it’s time to relax and prepare for sleep.

I was thinking about my own bedtime rituals and how they’ve changed over the years. When I was very young, my bedtime ritual consisted of my parents coming to tuck me into bed and probably reading me a bedtime story. When I was a little older, I added a new piece to the ritual, my parents would kiss me goodnight and then kiss my stuffed animal too. These were simpler, pre-diabetes times.

When you think of everything you do before bed, some of it you do because you know it’s good for you and your health, some of it you do because you have to, and some because you want to. Brushing your teeth, flossing, washing your face, these are all ways to take care of your body and your health. Taking medication or checking your blood sugar before bed are important rituals that can’t be forgotten. Reading, listening to music, meditating, cuddling your partner or your pet, these are things that you enjoy doing. Taken together, all of these activities become your bedtime ritual, changing as you grow and age.

I started thinking about this topic right before bed because of my newest additions to my ritual. Every night after I check my blood sugar, I calibrate my sensor on my pump. The calibration lasts 12 hours at best, so I want to make sure that it lasts through the entire night. This is something that I didn’t have to do with my old pump, but I’ve gotten used to doing it. But then, I go into my settings and silence all my alarms for the next 10 hours. I had to add this piece to my ritual because while calibrations should last 12 hours, many nights it would last closer to 6, and I was getting tired of being woken up at 4 am to buzzing telling me to calibrate. And worse, you can only snooze that alarm for an hour before it will go off again. So your only option at that point is to go test your blood sugar and re-calibrate, or continue to snooze and be woken up every hour. (Even with alarms silenced, it will still buzz for low blood sugars, so I feel comfortable implementing this work around every night).

But what category does this activity fall into? It’s not something that’s good for my health since essentially I’m ignoring alarms that are going off for a reason like alerting me of high blood sugars (although it is good for my sleep), it’s not something that I have to do, or something that I enjoy doing. This work around for a flaw in the technology has made its way into my nightly bedtime routine, but every night as I silence the alarms so I can get undisturbed sleep, I think to myself how I shouldn’t have to be doing this extra step. The failure of the sensors lasting the full night has resulted in more time and effort being required from me. It’s a small addition, but small additions add up. And instead of feeling calm and relaxed before bed, the little step adds a bit of annoyance and frustration each night.

There are many features of this Medtronic 670G insulin pump that I find annoying, this being one of them. But I’m learning to focus on what is within my control right now. I can’t always control when my pump is going to require a calibration, but I can control the level of interference with my sleep. Instead of feeling annoyed but this extra step, I try to feel empowered by my ability to make this device fit my needs and lifestyle instead of having its buzzes and beeps negatively affect my quality of life and sleep.

Really, my bedtime routine is kind of a metaphor for life itself. It’s made up of a combination of activities I like to do, some that I don’t necessarily enjoy but I know are good for me, and frustrations or challenges that I do my best to control or overcome. And yes, it would be simpler or more enjoyable if my routine was only things I enjoyed doing, but it’s the mix of the “want to”, “have to”, “try to”, that best prepares me for sleep…and life.

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My 670G Tips and Tricks

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It’s been about 2.5 months with my 670G pump. I’ve never had such an intense love/hate relationship with a medical device before. When asked if I’d recommend the pump or how I feel about, my honest answer is that I have very mixed feelings about it. And I think the most important takeaway is to have realistic expectations if you decide to get this pump. It is far far from perfect, but it has incredible potential. However, there are many and frequent frustrations, and for me, the pump was not only affecting my sleep (which obviously has implications for all areas of your life), it was also affecting my mood.

One thing I’ve learned over the past 17 years living with a chronic disease is that you have to make it fit into your lifestyle, not the other way around. That doesn’t mean you don’t make changes to the way you live, but it also means that to get through each and every day, you find ways to fit diabetes into the life you want to live. I have a few diabetes mantras, and one of them is “Diabetes does not define you.” My health and safety is always my first priority, but within the confines of this pump, I’ve found some tricks to get me through each day so that the pump is not negatively affecting my mood and sleep.

I’ll stop right here and say that what I’m about to tell you is not the way that the pump was designed and intended to work, so if you choose to try any of the tricks below, you do so at your own risk. I’m not recommending these for everyone, obviously you know what is realistic or not for your own life and circumstances. But this blog is for sharing my personal experiences so that’s what I’m doing.

My 670G Tips and Tricks

1.Be very careful about when you calibrate. Medtronic seems to have a lot of advice about this, don’t calibrate when you’re rising or dropping, don’t calibrate when there’s active insulin, calibrate about 4 times a day. I’ve also found that since I’m a stomach/side sleeper, I try not to calibrate when I first wake up even if it’s asking for one. I give it 30 minutes to an hour for the sensor to even back out. When I get into the cycle that says “Wait to enter BG” sometimes it helps to wait more than the 15 minutes, up to an hour even before entering the next BG.

2. Learn your sensor’s patterns. The sensor is supposed to last 7 days, however this has rarely been my experience. Here’s what my sensor timeline typically looks like:

  • Day 1: sensor is getting used to my body and usually isn’t very accurate for the first 24 hours.
  • Day 2-4: Sensor typically works pretty well, calibrations last close to 12 hours.
  • Day 5: Things start going downhill, either it will say change sensor or will need much more frequent calibrations.
  • Day 6-7: Hah

3. Adapt your manual and auto mode use to your sensor’s patterns. I’ve found that when the sensor is in auto mode, it requires many more calibrations, and that it is much quicker to not accept a calibration and eventually tell you to change a sensor than if it’s in manual mode. This makes sense. Since it’s giving insulin in auto mode, it wants to make sure it’s as safe and accurate as possible. However, if you want your sensor to get the full 7 days (or as close as you can), you can sometimes stretch the use by staying in manual mode for the last couple days. Here’s how it works:

  • Day 1: I keep it in manual mode for most of the day until the sensor is reading pretty close to my finger readings.
  • Day 2-4: Auto mode
  • Day 5: This is often where I get to the point that it tells me to change sensors. So now instead of cursing and getting mad, I disconnect the sensor from my body and charge it while turning off the sensor on my pump. Then I reconnect the sensor and “trick” the pump, telling it that it’s a new sensor. I then go through the warm-up period. For me, this works about half the time. If the sensor has gotten bent, then this trick won’t work, you’ll still end up changing it.
  • Day 6-7: Manual mode

4. If you feel comfortable, alert silences can be a great thing. I always calibrate my sensor right before bed, hoping it will last the 12 hours. However, if you’re close to day 5 and beyond, the sensor will often ask for a calibration 6 hours later, which for me is around 4 or 5 am. I was waking so frequently that my body started automatically waking up at 5 am every morning, and I would have trouble falling back asleep. So now, I make a judgment call each night. If I feel pretty sure that my blood sugar isn’t fluctuating too much, I sometimes choose to silence all alerts for the night. This way it won’t wake me up if it needs a calibration. I did find that it does still vibrate for low blood sugars. The pros: an undisturbed night of sleep. The cons: if it does need a calibration during the night, you won’t have any readings and if you’re in auto mode, it probably will eventually kick you out. So ultimately this comes down to what you’re personally comfortable with. I don’t silence the alerts every night, more so for the nights I just really want an undisturbed night. And I’ve always been able to feel my lows during the night so I don’t rely as heavily on the pump alerts. Then if I wake up at 4 or 5 in the morning, I’ll often calibrate anyway. But at least then it’s my body waking me up, and not my pump.

Everyone’s needs and experiences are different. My “tricks” might not work for you or fit your lifestyle or may not be how you want to be using the pump. But maybe they do help. Either way, I’m all about sharing and learning from one another.

Sensors and Censors

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F***!!!!

Anger is an interesting emotion. It heightens your senses, it gives you a physical reaction. It’s powerful. It can spur you to take action- for better or worse.

I’ve been feeling a lot of anger lately. But this anger feels different. I’ve been struggling to figure out what I can do with this anger, how I can channel it into something productive. Something that can solve the problem so there are less angry situations, something that will make me feel at ease. But what makes this anger different is that I feel completely trapped in the situation. It’s a situation with limited options to make it better, options that while might temper the anger, will have other negative consequences, potentially even to my health. I weigh these pros and cons and I feel a sense of helplessness.

With my new pump, I’ve been using new sensors. These sensors are what the pump relies on for blood sugar numbers to make decisions to give more or less insulin. They are what the defining feature of this pump is dependent on. These sensors are supposed to last 7 full days. This was already a disappointment as the sensors I was using before often lasted 10-14 days. In reality though, these sensors are lasting around 5 days on average before a new one needs to be inserted. And after day 4, for the rare ones that do last longer, they are becoming less accurate and need more calibrations. They end up waking me in the middle of the night when the calibration only lasts 6 hours instead of 12.

changesensorYesterday, after wearing the sensor for 3 days, I got a message that the sensor was updating and then a message that said, “Change sensor. Sensor not working properly insert new sensor.” In that moment I was furious. I screamed obscenities in my head at my sensor and texted my boyfriend the picture of that screen with 10 emojis of the middle finger and angry faces.

So what’s the big deal changing a few days early?

  1. It’s disruptive. It means the pump isn’t working to its full potential. It means until I change the sensor, I don’t have information about my blood sugar without poking my finger. So now I’m having to poke my finger more, I’m missing the data I rely on, and I’ll have to wait up to 2 hours for it to start again.
  2. It’s a pain, literally. Sometimes the insertion hurts, and I don’t know about you, but I don’t like doing things that hurt more often than necessary.
  3. It’s expensive. The faster you run through them, the sooner you have to order more. And they are not cheap.
  4. It wastes time. Medtronic will replace many of the sensors, especially ones that stop working after only a few days. But this could mean being on the phone for anywhere between 20-45 minutes with the person. Then having to wait while they ship a new sensor out.
  5. It’s supposed to work! Forgive me for thinking that the expensive medical device that I use is supposed to be reliable and consistent and accurate and cause less hassles, not more.

I understand that this particular pump is new, and by being one of the earlier people to get it, that there may still be kinks that they’re working out. But I also still feel like my anger is valid. So when I see that screen that tells me to change my sensor days before I should be, I get angry. But I also feel stuck because I made the decision to switch to this pump. And this is the reality. Can I get a different pump? Maybe? Might be a hard sell to my insurance who only covers new pumps every 3-5 years. Do I really want a different pump? I don’t know. When it’s working, the pump is great and truly is cutting edge.

So I’m stuck with a strong emotion that I don’t know how to productively channel. I’m pretty sure yelling F*** every time it happens doesn’t count. So what am I doing, what can I do about it? I’m speaking up. I’m telling my doctors what I’m experiencing, I’m blogging and telling you about it. I’m telling my Medtronic trainer. I’m telling anyone who asks me about the pump and is considering switching themselves. If improvements are going to be made, the company needs to know what’s not working. If people are going to switch to this pump (which I still encourage for all the benefits it does bring), I think they should be informed about the downsides too and have realistic expectations.

And until improvements are made, I’ll deal with my anger. And be thankful that I work from home when that involuntary “F***!” sneaks out after another sensor fails.

The Fighting Kale

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There are a lot of words that I could use to describe myself, but gardener is not one of them. In fact, I often joke that I have a black thumb, killing even the hardiest of plants. My boyfriend on the other hand, loves to garden. When I managed to nearly kill a succulent, he nursed it back to health. When he talks about his plants that he grew in containers on his balcony and the vegetables that he harvested, his face lights up. You can tell it’s something that he’s passionate about. So when he suggested that I try to grow some vegetables on my apartment balcony with his guidance, I figured I’d give it a try.

DDDC4FF2-A5D5-439B-82DC-845CF497CFD3We planted 2 kale plants, one beet plant and some chives. I’ll admit, it was pretty amazing to see the transformation of the plants in just a few weeks time. My garden consultant would examine the plants and tell me when to water and how much, helped spray the plants with organic pesticides and just generally kept an eye on how things were going.

It became a ritual each morning to check on the kale plants and report back the progress. Everything seemed to going well until random holes started to appear on the leaves. At first I couldn’t tell what was causing it, but then we found the culprits: baby cabbage worms.

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Get off, worms!

My boyfriend picked them off and we sprayed the leaves again. I thought that was the end of it. We went out of town for a long weekend and returned to devastation. The poor kale plant was almost completely devoured by the now rather large and plump worms.

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At least someone’s enjoying them

It was a sad sight. The worms had won. I’ll admit that I pretty much gave up on my kale plants. It was a good first attempt at gardening, my black thumb prevailing in the end. My boyfriend cut off the mostly eaten leaves, leaving the middle stem, hoping for the best.

And guess what?! Those darn kale plants are fighters! They’re growing giant, strong leaves, with more leaves constantly starting. I look at the plant and I can’t believekale5 it’s the same one that I had practically written-off as a failure. I’m sorry I doubted you, kale. You survived the worm invasion and came out even bigger and stronger than before.

So why am I telling you about my gardening adventures on my blog about diabetes? I’ve been having a really difficult and frustrating time with my pump and CGM the past 3-4 months, which has resulted in poor blood sugars, bad moods, and a lot of frustration and even tears. I haven’t blogged in awhile because I didn’t want my blog to turn into a place of negativity and complaining.

While sitting outside working today, admiring the recovery of my kale plants, I realized that I am in the midst of my own worm invasion. (Metaphorically. Don’t worry, I don’t have worms). Things are hard right now. I feel my mental and emotional resources depleting. It’s sometimes hard to stay optimistic. But I, like my kale plants, am a fighter. And I too hope that in time, I’ll be even stronger and healthier than I am now. I wrongly doubted my kale plants, I won’t make the same mistake with myself.

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You put the “um” in “numbers”

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“What do the numbers say?”

Numbers are often seen as this objective piece of data. And because they are objective, they cannot lie, right? We might not always like what they tell us, and they don’t always tell the complete story, but they’re often hard to argue with. How’s my blog doing? Well let me check the analytics and number of viewers. How’s my health doing? Well let me check my blood work: my blood pressure, my cholesterol numbers, my A1c. Success criteria is often operationalized in numbers. Who won the race? Let’s check the times. Who won the game? Let’s check the score.

You learn to trust the numbers. And while you can interpret the numbers differently, put them into context, explain the variance or trends with outside information and external variables, the numbers are what they are.

You start to crave the numbers. If some numbers are good, more must be better. I recently switched to a smart scale. I wasn’t just content with knowing my weight, I wanted to know my body fat percentage and my muscle mass percentage too. More numbers could help elucidate what’s really going on in my body and alleviate any uncertainty. If I’m working out more, but I’m gaining weight, I would feel much better knowing the weight was coming from more muscle mass and not body fat.

You rely on the numbers. They show your progress. They show your weaknesses and your strengths. The numbers are your guideposts.

So imagine how you’d feel if those numbers fail you. When all of the sudden, they can’t be trusted. And instead of helping you, they lead you astray.

Lost? Frustrated? Angry? Disappointed?

That’s how I felt as I returned home from my 3 month endo appointment this week. In the past 3 months I’ve had one major change, I switched insulin pumps and continuous glucose monitors. I was having so many issues with the sensor leading up to the appointment. It would suddenly stop working after only 1 to 2 days, it was inaccurate compared to my finger tests, the trending arrows were completely misleading. I told my doctor these problems, but I was still optimistic. After all, I had started eating healthier, been more consistent with my metformin to help with blood sugar spikes, I didn’t feel like my A1c should have been much different from 3 months earlier. But I was wrong. Those inaccurate numbers had contributed to my A1c going up .6 of a point. This may not seem like much, but when you are trying to get below a certain number and are at the lower end, to suddenly be back at the higher end is very discouraging.

numbersAll day I alternated between being livid and just feeling sad. I felt let down by the numbers I rely on every minute of the day to be healthy. By the end of the day, I made the decision to switch back to my old, reliable sensor. Enough is enough. My health shouldn’t be made worse by the devices that are meant to improve it.

Numbers are complicated. So is having diabetes. And that means being critical of the numbers, always. Because what is meant to be helping you could actually be making things worse if you aren’t careful.

 

 

 

The CGM Courtship

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For the most part my continuous glucose monitor, Gigi, and I are inseparable. We’re attached at the hip, well technically more like the lower abdomen. Over the years, I’ve noticed that Gigi and my relationship has fallen into a pattern. As far as relationships go, it may not be the most functional relationship, but it is consistent. And by being predictable, I’ve learned how to make it work for both of us.

Mine and Gigi’s relationship cycles about every 2 weeks. And while the overall nature of the relationship may be the same, each encounter is slightly different.

Day 1: We meet. Again.

3a318-photo11Sometimes it’s been a while since we’ve  last seen each other, other times only a couple of hours. This first encounter has gone many different ways. Sometimes it’s smooth and painless. We connect effortlessly. Other times, it’s awkward and hurtful. On a few occasions, we have to start completely over, the discomfort and inadequate connection too much to bear. But eventually we make it through this initial introduction.

Day 2-4: The courtship.

These first few days together I’m optimistic, yet cautious. I can tell Gigi is trying to give me what I need, but she can’t completely be trusted yet. Our connection still new, we’re still out of sync. These days are spent aligning our desires. When Gigi tells me something, I often have to verify with another source. But these calibrations make us stronger together.

Day 5-11: The sweet spot.78db7-photo39

With time, we hit a groove. We’re in sync. We become completely trusting of each other. We are one. When Gigi tells me I’m low or high, I believe it. Gigi’s screen reflecting what I feel, the beeps and vibrates warning me of danger. I can count on Gigi to be there for me, to be fully present and connected.

Day 12-14: The beginning of the end.

Like any relationship, aspects of Gigi start to become annoyances. Gigi becomes a physical itch that can never quite be scratched, never feeling gratified in my efforts to find the comfort I once had. The beauty of our connection begins to fade, the tape that once held us together, no longer sticking. My distrust of Gigi starts to return. Sometimes Gigi just disappears for no reason, replaced by a signal reminding me that our connection is breaking and out of range. Other times, we don’t seem to be communicating at all, Gigi completely mystified and communicates only with ???. And the lies! Gigi tells me I’m low- 55, but I feel fine. When I check my other source it says I’m 155, how can this be?! But it’s not all bad. There are stretches when Gigi is perfectly normal, and its for this reason that I can’t bring myself to end things quite yet.

Day 15ish: The break up.

Finally, it all becomes too much. The distrust, the lies, the disappearing. Gigi can no longer be counted on to display the truth and be depended on when I need it. The physical discomfort grows. So I do it. I rip the tape off in one decisive yank and end things once and for all. The redness on my skin remains as the memory of the past 2 weeks fade. For a moment I savor the unattached freedom. But this feeling is fleeting, already I miss the valuable insights that Gigi gives me. I miss the comfort of always knowing where I stand, I miss the control that Gigi affords me. I miss Gigi.

And so it begins again.

Day 1: …