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?

bolus

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 ūüėČ

 

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.

 

 

 

Meet the Dario Smart Meter

About a month ago, the company Dario contacted me and asked if I would be willing to test their new diabetes management system and meter. Always interested in trying the latest and greatest, I happily agreed. Dario supplied me with the meter and a limited supply of test strips and I downloaded the app on my phone. So here is my honest review of the meter from my experiences over the past couples weeks.

The Packaging

imageLet’s just say, the meter makes a damn good first impression. I’m someone who appreciates the artistry of a well packaged device. I love opening Apple products for that very reason. All my past meters have just come in a normal box, nothing special. The Dario meter was not like that at all. Every piece had a place, the packaging was slick and sophisticated. It was a pleasure to unpack this medical device, and that says something.

The instructions and reading material was conveniently hidden within the box while the lancets were cleverly stored in a neat compartment next to the meter.

The All-in-One Device

There are 2 things that make this meters and management system so unique. The first is that it turns your smartphone into the meter (more to come on that later). And the second, is that the lancet and test strip holder are combined into one, well designed and easy to use device.

Holding the device, it doesn’t look anything like past glucose meters I’ve used before. Without knowing what it is, I never would have guessed what it was used for, which is great if you like to keep things discreet.

The Lancet

The needle is housed on one end of the device. To access it, you just snap off the top orange piece. You can set the depth of the needle, and then you follow the arrow and pull down on the black piece to load the needle before pressing the orange button to release it. Super simple.

Test Strips

They’re stored on the other end! How awesome is that?! No need to carry around multiple pieces. The cartridge of 25 test strips just snaps into place. You just remove the white piece at the end. The box of test strips came with two 25 test strip cartridges.

The Meter Attachment

The Dario system turns your smart phone into your meter by plugging in a small attachment into the headphone jack. The attachment is also stored in the all-in-one device.

The Meter

The packaging on the box clearly explains how to download and set up the app on your phone, walking you through the set-up. To test your blood sugar, you plug in the attachment and open the app. If the attachment is in correctly, it will prompt you to insert a new strip and then place a drop of blood on the test strip. The meter counts down by filling in a circle before displaying the glucose number. It uses a color coding system to visually show if it’s within range, borderline, or high. It then immediately takes you to a screen that allows you to indicate if its pre-meal, post-meal or a bedtime reading and then insert additional information related to carbs, insulin, physical activity, and even tags.

The App- Tracking and Analytics

Overall, I’m impressed with this app and how intuitive and easy to use it is. I think it does a really good job of logging important information and then displaying it in a meaningful way to the user. You are able to set up a personal profile which includes your blood glucose thresholds, hyper/hypo warnings, and then the type of basal/bolus medication you use.You can sync fitness apps, track food, and set reminders in the app.

Logbook and charts

imageThe app automatically stores every reading in the logbook and you can decide if you want to view it more as a list, a timeline or a chart. The chart will graph up to the last 14 days. You can also easily share your logbook either as a PDF or CSV with your phone contacts or by entering an email address.

The statistics tab gives you a great summary for the day, or the last 7, 30 or 90 days. It will tell you how many readings you had, the lowest and highest and then breaks it down by how many were in range, below or above range and then how many hypos/hypers you had based on your settings. If you click the summary box, it will show you all the readings that fell into that category. It also shows on the website that the app estimates your A1c.

 

Things I like and Areas for Improvement

What I love:

  • I love how everything fits together into one device. Instead of carrying around my pouch with all the separate pieces (meter, test strips, lancing device, etc), all I really need is the one device and my phone
  • It’s great at logging everything and makes it super convenient to share
  • I don’t have to worry about charging my meter, as long as my phone has battery, the meter will work

Some drawbacks/areas for improvement:

  • It’s a slightly slower process. Maybe I’m just used to my old meter, but I find that the whole process takes a little longer to test. Since it’s an app on my phone, I need to unlock my phone, open the app (sometimes it takes a second to load), insert the attachment and then test. Don’t get me wrong, it’s still a relatively fast process, but I found that when I was in a hurry, I resorted back to my old meter
  • It doesn’t sync with any other diabetes devices. This might be the biggest drawback. My other meter at least would send the reading to my pump. This meter doesn’t. So if I’m correcting or bolusing, I have to manually enter my bg number in my pump.
  • My summary feels misleading.¬†I have a CGM that I use in addition to my meter. ¬†Most often¬†it’s when my CGM says that I’m high that I test to get a more accurate number to correct and give insulin. For that reason, high blood sugars are over-represented in my logbook on the app and isn’t really capturing the whole story. If the app was able to integrate with my CGM, it would give a much more accurate picture of my blood sugar history.
  • Greater integration.¬†This is not only with diabetes devices, but also other apps. It’s great that you can link a fitness app like runkeeper, hopefully the list of apps or wearable devices that it links with will continue to grow and include some food tacking apps as well, like MyFitnessPal. It would be great if the app could be used as a one stop shop for diabetes health more generally, including fitness and healthy eating. Also, it would make entering data related to fitness easier. Currently it asks you to enter physical activity as calories burned whereas entering the amount of time would be easier.

 

Being a cyborg

Maybe I’ve been watching too many¬†comic book and sci-fi movies/shows lately, but I’ve come to the realization that technically, I’m kind of a cyborg thanks to my insulin pump.

Well first, I had to look up the actual definition:

Cyborg–¬†noun
1.
a person whose physiological functioning is aided by or dependent upon a mechanical or electronic device.

My physiological functioning is dependent on my insulin pump essentially acting as my pancreas. And while it’s technically not built into my body (maybe it will be in the future), it’s still attached at all (well, most) times. But upon¬†reading other definitions, most cyborgs’s mechanical or electronic device allows their physical abilities to¬†extended beyond normal human limitations. While my insulin pump makes my diabetes much easier to manage, it’s still not the same¬†as an actual working pancreas and so it probably wouldn’t qualify in that sense.

But that’s not the aspect of the pump that I want to focus on today. Instead, let’s talk about one small feature of it, the light.

IMG_0371My insulin pump has a button that turns on the screen’s back light. This makes it easier to give insulin in the dark. But its uses extend beyond merely giving insulin. I essentially have a built in flashlight at all times.

When I get up in the middle of the night to use the bathroom, I turn on the light and use it to guide me through the dark. Unlike the jarring light from a phone, the brightness doesn’t rouse me from my slumbered state.

My reliance on my light is most apparent when the battery in my pump needs to be replaced and the function stops working. I stumble through the darkness to the bathroom, cursing myself for not replacing the battery when I first noticed it was low. No matter where I am, a dark movie theater, my bedroom, or even a cave, this light is always available (and connected) to me, allowing me to illuminate the darkness. It extends my abilities beyond normal human limitations.

In many ways, my type 1 diabetes has essentially given me both physically and metaphorically, a light in the darkness.

 

The CGM Courtship

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: …

 

2015 Diabetes Blog Week Day 4- Changes

Diabetes Blog Week

When I think about diabetes and what I’d like to see changed, one word comes to mind. Well maybe 2, a cure would be a nice change. But the word I’d like to focus on is integration.

Integration. I could yell it from the rooftops. Integration would make diabetes so much easier to manage. It would make communication so much more effective. It would make our lives in general a little less burdensome. 


What exactly am I talking about?

I want diabetes devices talking to other diabetes devices. I want my pump, my meter, and my CGM to all communicate constantly. And while I know this is unrealistic, I wish that this communication could happen across companies so that my dexcom CGM could talk to my Medtronic pump or a Bayer meter could talk to an animas pump. I want numbers and data flowing freely from one to the other, whether it’s then used in a calculation, helping to inform a decision, or just being stored for later retrieval.

I want diabetes devices talking to non diabetes devices. I want my CGM numbers and my pump talking with my phone, presenting my data (carbs, boluses, blood sugars) in an easy to read and accessible manner in an app. I want their data showing up on a graph on my computer or tablet. I want other apps that I’m using to integrate in a platform with my diabetes data, whether it’s food tracking that I do or exercise tracking. How great would it be for one app that would have my carb and bolus information from my pump, graphed against my blood sugars that are collecting from my meter and CGM, informed by my Fitbit tracker active minutes and steps, and integrated with the food that I tracked during the day in My Fitness Pal?! Think about how much easier it would be to see a trends and potential causes for highs and lows. Based on the food you ate here, it looks like you gave too much insulin and that’s why you dropped low here.

I want ALL of these devices talking to my doctor. I want to be able to walk into my endocrinologist’s office or even my primary care physician, or eye doctor, or really any doctor’s office and have all of this information available to them. I want the information from all of my devices to be consolidated into a format that is integrated right into my medical record. Then when I go to the endo, they aren’t making suggestions based off of just my CGM, they are looking at the complete picture with little burden to me since all of this uploading, syncing, and integration happens automatically.¬†


I’m hopeful that these changes are coming soon, that this is the future of diabetes self-care. Integration will be a requirement, not just a nice feature.¬†


This post is part of the 2015 Diabetes Blog Week. Today’s topic:¬†
Today let’s talk about changes, in one of two ways. ¬†Either tell us what you’d most like to see change about diabetes, in any way. ¬†This can be management tools, devices, medications, people’s perceptions, your own feelings ‚Äď anything at all that you feel could use changing. ¬†OR reflect back on some changes you or your loved one has seen or been through since being diagnosed with diabetes. ¬†Were they expected or did they surprise you? You can read more posts on this topic here.¬†

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.

Integration

“What is it?”

The devices gathered around, peering inquisitively at the band that lay in the middle of the circle.

“I don’t know,” B.G. Meter replied, inching closer.

“Don’t touch it! We don’t know what it does! It might be dangerous!”

Meter gently tapped on the black surface and a series of bright white circles bounced across a mini screen.

“Look it lights up!” Gigi exclaimed.

“Why hello there,” the band stretched out, springing to life. My name is Fitbit Flex. And who are all of you?”

“Oh um, hi. My name is B.G. Meter and these are my friends Insul N. Pump and Gigi CGM. We didn’t mean to bother you, but we noticed that the Human started wearing you and we were curious what you were doing.”

“Oh how lovely! It’s always a pleasure to meet new devices. I’m a tracker. When the Human puts me on her wrist I can tell her how many steps she takes each day, how many calories she’s burned and even how well she slept!”

“Oh wow. You must take a lot of blood to figure out all that information. Where is your lancet hidden? Not that I was checking you out or anything, but you have a rather sleek design.”

“You’re making me blush, Meter. I actually don’t need to take any blood to figure out those numbers.”

“Whattt!? No blood? But you’re still under the Human’s skin right, like Gigi or Insul?”

“Nope. I prefer to stay away from bodily fluids and functions.”

“Crazy! How come you can’t do that, Gigi? So how does the Human know how many steps she’s taken? I noticed you don’t have a very big screen.”

“Yes, bigger is not always better, Insul. When the human lightly taps on me, my dots show what percentage of her goal she has completed. One dot is 20%, two is 40%, etc. But more importantly, if the Human takes out her phone and opens my app, she can see all these numbers and graphs right on her phone.”

“Wait, let me get this straight. You send your information right to the Phone, the thing that the Human always has with her?! And she doesn’t have to type anything in? We’ve been trying to get our numbers on the Phone for ages, but it will never take it from us!”

“Well that seems rather silly to me. The app also lets the Human keep track of other things too like her weight, calories eaten, and how much water she drinks. She can even cheer on or taunt her friends to reach their goals.”

“How can we get our numbers on there?? I know that the Human can manually type in that kind of information, but she’s kind of lazy. It would be perfect if her blood sugars and units of insulin delivered was wireless sent and synced right in your app. With your information about steps and activity and food logging and our information about glucose numbers and insulin, we could really help the Human understand the big picture!”

“You know what, Gigi, that’s a great idea. Hopefully someone smart is working on figuring that out right now.”

I sure hope so.