The Sugar Finger

Sticky fingers. Finger lickin’ good. Finger food. Wrapped around your finger. Can’t put your finger on it. Fingers crossed. Finger on the pulse. Butter fingers. Point the finger. Finger on the button. Slip through your fingers.

We have a lot of finger phrases. I have a new another one to add to the list:

Sugar finger: the finger that when checking your blood sugar with a finger stick, results in a consistently and significantly higher blood sugar reading than the other fingers.

I saw one definition online calling the middle finger the sugar finger, which is also fitting because I definitely wanted to give my meter the middle finger. Twice now, I’ve checked my blood sugar on one finger and was shocked by the high number. Something in my gut told me this wasn’t right (and of course this happens when my sensor is updating, or warming up, or already at the top of the graph so it couldn’t be counted on). So I washed my hands and checked another finger on the other hand. Sure enough it was at least a 100 points lower. So I check a third one just to be sure that the lower reading is accurate. Yup, it’s confirmed. I’ve had fingers be off before, but never so drastically, and two different days. I’m just glad that I didn’t correct based on the higher, inaccurate reading.

Right hand, index finger. The sugar finger.

Taking that finger out of rotation for a little while.

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Bedtime rituals

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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670G: a poem

The dust has settled.

Emotions have leveled.

Medtronic 670G,

You are now a part of me.

Over 4 months we’ve been together,

Your storms I’ve learned to weather.

To use your sensor I did try,

But frustrations piled high.

So many alarms I would hear,

The constant buzzing in my ear.

Less than a week and sensors would fail,

Every time, I let out a disappointed wail.

Eventually I learned some tricks,

Sleepless nights they worked to fix.

Auto mode is not perfection,

Blood sugars in both directions.

But at the endo there was good news,

A half point down my A1c did lose.

While sometimes I find myself in a bit of a slump,

In the end I’m so thankful for this insulin pump.

 

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My 670G Tips and Tricks

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

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.

An update on the 670G pump

It’s been 3 weeks since I started on my new Medtronic 670G insulin pump, 21 days since that life changing day I wrote about. So you’re probably wondering if it’s as great as it seemed to be after those first 2 hours. Honestly, no, it hasn’t been as smooth and hassle free as I had hoped. But after 3 weeks, I can definitely say it’s made an improvement to my life and my blood sugars and I’m so glad I made the switch.

Let’s start at the beginning. About 3 hours after posting how great the pump is, it kicked me out of the auto mode and I got stuck in an endless loop of it asking me for a blood sugar to calibrate, calibrating, asking for another blood sugar, processing, and then saying to wait. This went on for hours. Finally I called the medtronic helpline and spent an hour on the phone with a support person. After the hour, he still couldn’t fix it and I ended up having to take out the sensor which was working fine. It was a frustrating start.

After putting in a new sensor, things seemed to be going better for awhile. I was able to get back in the auto mode feature. My blood sugars have had way less drastic highs and lows, although I still find myself in the 200/250 range and the auto basal doesn’t seem to do much to bring it down. I’ve also had fewer lows especially those that are a result of correcting for the high spikes.

The alarms are a bit annoying, I find that even if I calibrate before bed, it still might need a calibration in the middle of the night, and I get awoken by the buzzing. I find that most often when I do get kicked out of auto mode, it happens during the night. I’ve also gotten stuck in that same loop of repeatedly asking for a blood sugar and not getting back into auto mode for a few hours a few more times. But luckily I haven’t had to take out any other sensors.

I had my 3 month endo appointment yesterday, and even after only having the new pump for 3 weeks, my A1c dropped half a point, so obviously it’s helping. I’m optimistic that the number will be even lower at my next appointment.

Is the pump perfect? No. There are a number of annoying features and issues that happen. But that comes with being an early adopter of a new technology. Am I glad I went through all the waiting and headache to switch? Hell yea! Even with its issues, I can see the positive effect this pump is having. And some of it is still user error. I’m sure my numbers would be even better if I remembered 100% of the time to prebolus my meals and improve other habits.

As someone reminded me, it’s not a magic pill (or pump) that’s going to suddenly make every blood sugar perfect. It’s still a piece of technology that has made advancements, but still requires effort on my end too. With that in mind, I’m eager to see what happens in the next 3 months.

 

 

A life changing day

Today is a life changing day.

No, seriously.

Today, I woke up early, drove 45 minutes to my second training for my new Medtronic 670 G insulin pump, and they turned on the auto basal feature on my pump. What does that mean? It means that this first pump of its kind now has the ability to see what my blood sugar is and every 5 minutes, all on its own, give micro amounts of insulin to make sure my blood sugar stays as close to 120 as possible. It means that if my blood sugar is going up, it will give more insulin, and if its dropping low, it will give less. ALL ON ITS OWN!!! Yes, I still give insulin when I eat or give corrections when necessary, but it is working to manage my blood sugar in the time in between so that I hopefully don’t need to be giving corrections at all.

I’ve been open about my struggles to keep my blood sugars in range, I experience a lot of roller coaster ups and downs, and while my A1c has fluctuated over the years, I’ve never been able to get it to 6.0, a goal that I work every day to achieve. I’ve experienced frustrations, burnout, sadness as well as pride and celebrations over the years, but this new pump feature has the potential to be life changing for someone like me and many others with T1D.

pump2.jpgIt has literally only been about 2 hours since I turned this feature on and I’m sitting looking at one of the straightest, steadiest, in-range blood sugar graphs and I can’t help but get emotional. I have tears falling down my cheek as I type this. I don’t know that I can communicate everything that I’m feeling right now. For some of you, maybe you can relate, and for others, I hope I can come close.

Diabetes is all consuming. You have to be thinking about it all day, every day. You can’t take a break, you can’t say, “I don’t want to deal with you right now” without facing consequences to your health. Diabetes takes so much time and energy, and some days can be so physically and mentally exhausting. It’s exhausting when your blood sugar is running high and you’re not exactly sure why, it’s exhausting when you’re exercising or out with friends and it drops low and you have to stop what you’re doing and treat it and wait to feel better. It’s exhausting just not feeling your best or being able to give your best because you feel low, or high, or just off. It’s exhausting feeling like you do so much, but don’t have the numbers to show for it.

pump1.jpgJust the idea that this pump is literally asking me to give up a lot of control, trust the sensor, and let the pump do some of the work is simultaneously terrifying and liberating. It takes away just a little of the burden of living with diabetes, but even that little bit counts for so much! And I am so grateful and excited that a pump with a feature like this finally, finally exists. The fact that I potentially won’t have as many roller coaster highs and lows is such an incredible thought that is almost too good to be true.

I’ll let you know if I feel the same way 2 weeks into wearing this pump as I do 2 hours in, but for now, I am just so thankful to finally have a piece of technology that can truly help me in a way that I haven’t experienced before. And while it’s not a cure, it’s definitely a step in the right direction.

 

 

Hurry up and wait

My new medtronic 670G insulin pump is sitting in a box in my living room. It’s finally here.

When I first decided to upgrade to the new pump, it was around January and they told me that I should have it in spring. Well come May, I got a phone call that the process would start, but still no pump. They told me early summer. So I waited. In June I got another call, 3-5 weeks they said. So I waited some more. And finally, mid July, it’s in my possession. But now I have to wait to be trained on it before I can use it, so there is sits in my living room, still waiting to be used.

I should be elated, but instead, I feel like the Grinch on Christmas morning. I don’t know when I became so pessimistic, so skeptical. It’s partly my fault. I got caught up in the hype, after all it’s the “world’s first hybrid closed-loop system.” There were articles calling it the “first artificial pancreas” a “game-changer device.” It must be something great!

But I’ve been so utterly disappointed and frustrated by the 630G that my expectations are now very low for this new pump. And the mixed reviews that are starting to trickle in from people using the 670G doesn’t instill a ton of confidence. But don’t be mistaken, I am still excited and feel very fortunate to be able to use this pump. I just want to be honest with how I’m feeling. And with low expectations, I sincerely hope that my new pump far surpasses them. I hope I’m proven wrong and can come back and write how much I enjoy the new pump and the positive difference it’s making. I really really do.

So back to the waiting. On the plus side, gives me a bit more time to work on my pre-bolusing.

 

Diaversary, henna, and pre-bolusing

Today is my diaversary. Today marks 17 years since my diagnosis. Seventeen years since I went in for my 12 year check-up, symptom free, seemingly healthy, and got the news that would forever change my life. I remember my diagnosis, the flood of information and emotions. I also remember the doctors saying, they’ll probably have a cure in 10-15 years from now. Seventeen years later, there is no cure. But there have been many improvements in the management of type 1 diabetes.

In my 17th year with diabetes, I am eagerly awaiting the most advanced insulin pump to date. It has the ability to self-adjust insulin automatically based on your blood sugar number, a feature that has the potential to be incredibly helpful to keep blood sugars in range. It’s not a cure, but it’s a big step forward towards a completely closed loop system.

But there have definitely been hurdles and setbacks on the way. And while talking to a diabetes educator about this new insulin pump, I found out a crucial piece of information about how the auto basal feature works. She said, in order for that new feature to work, you have to pre-bolus for your meals. That means giving your insulin 10-15 minutes before you eat. Otherwise, your blood sugar could rise too rapidly and the pump will kick you out of that feature. For most people, this probably isn’t a big deal, after all, you’re always supposed to be pre-bolusing your meals ideally. But for me, it’s been 17 years of NOT pre-bolusing.

So I here I am, with a few weeks to break a habit that is 17 years in the making. It’s not that I don’t bolus, I usually end up giving it half way through a meal or after I finish. But I’ve waited so long for this pump, I want to be able to successfully use the new feature. So how do you make yourself remember to do something? Well, I’ve been trying a few things.

  1. I’ve been telling people around me to remind me to prebolus. I want the help, I want people to bug me. I need the reminders. However, I’m finding that most people I’m with also forget so it hasn’t been that helpful.
  2. My mom tried to get me to associate eating with a small meditation or thanks before I eat and then associate that with bolusing. It’s a great idea, except it’s just another thing to remember, so that hasn’t been working either.
  3. Someone suggested setting an alarm. I do use alarms, however, I don’t eat at consistent times always so the alarm wouldn’t be helpful.

hennaI was stumped. Until about a week ago. I was at an art fair with my family and there was a booth with 2 women doing henna tattoos. I love the intricacy of the designs and got one on my arm. Henna tattoos can last anywhere from 1-2 weeks. I loved looking at it on my arm throughout the day. And that’s when it hit me! What about a visual reminder to prebolus? What if I write it with henna on my hand, so then I’ll see it when I’m about to eat and remember to give insulin?

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So that’s exactly what I did. I had my sister write “BOLUS” on the thumb of my dominant hand in henna. You definitely can’t miss it, I’ve even had strangers ask me what bolus means. Is it working? Ehh, kind of! About half the time I remember to prebolus, and the other half, I’ve at least remembered halfway through a meal and not after I’m done. Small steps. And the more I do it, I know it will eventually become a habit.

Seventeen years later and I’m writing words on my hand so I don’t forget. Yes, I wrote 17 not 70, although maybe this will be a trick I take into my old age 😉

 

You put the “um” in “numbers”

“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.