Playing the diabetes card

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Having type 1 diabetes makes your life harder. That’s a fact. You have more to think about, more to do, more to calculate, and more to deal with than someone who doesn’t have type 1 diabetes. Not to say that they don’t have their own struggles, but I think we can all agree that having a chronic disease makes your life more challenging.

Despite this, I’ve often been hesitant to use this fact to my advantage when the opportunity arises. As some call it, “playing the diabetes card”. Not that it’s wrong to do that, there are definitely situations where it calls for bringing attention to the fact you have diabetes, whether it means special allowances in schools or being able to carry food into places where it isn’t allowed in case of lows. I’m all for that. In fact, I recently went to a music festival and emailed ahead of time to make sure I’d be able to get my fruit snacks in despite the “no outside food” policy. When it’s an issue of safety, I’m not afraid to speak up. But other times, I tend to keep quiet.

A number of years ago, my friend and I decided to go to NYC’s Times Square for New Year’s Eve. We got there many hours early and were sectioned off into blocks. We were told that if you left the barricaded block, you wouldn’t be allowed back in, that meant even for the bathrooms. When I inevitably had to pee, I ended up holding it for hours. It was miserable. Looking back, why didn’t I just tell the person standing watch that I had type 1 diabetes, a medical condition that can make you urinate more frequently at times? I’m sure they would have made an exception. But instead I suffered in silence.

More recently I went to an amusement park where we stood and waited in long lines in the 90 degree heat. It was rough. When talking to a friend, she mentioned that some amusement parks will give your group a pass to cut the lines if you have diabetes. I get it, it’s hot, there are long lines, people can get low blood sugar stuck in line. I think this is a great option, especially for families with kids. But this is also where I’m torn. I do so much work on a daily basis living with diabetes, on one hand it seems like I should take the break when and where I can get it. But on the other hand, I’m always prepared, I know I’m capable of waiting in long lines, I carry sugar with me always, do I really want to “pull the diabetes card”?

There’s no right or wrong in this situation. People do what they are comfortable with, what they need to do. I’m not judging anyone’s choices in situations like this, I’m more reflecting why it’s so hard for me to accept these types of privileges and allowances. I think what it comes down to is not wanting a chronic disease to make people have to treat me differently, even if the treatment is beneficial. Type 1 diabetes is an invisible disease, people don’t know you have it unless they see a pump or sensor or see you check your glucose or give a shot. I’ve spent so much of my life blending in with diabetes, not ashamed at all of it, but choosing not to stand out. I tell the people I need to that I have it (friends, teachers, coaches, fitness instructors, etc) and I’m always willing to answer questions about it, but I don’t like people making a fuss or singling me out because of it.

I’ve spent the last 18 years figuring out how diabetes fits into my life. How much I want to share, what I feel comfortable doing or not doing. It continues to evolve as I too continue to change and grow. And maybe sometimes it’s okay to be singled out, to get a break. I’ll let you know what happens the next time I go to an amusement park…

 

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. 🙂

The hypo hangover

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30s.jpg

Replace four hours of drinking with 2 glasses of wine and you’ve pretty much nailed it. As my 30th birthday approaches, feeling the effects of a couple drinks the next day isn’t the only change I’ve begun to notice. When I get out of bed each morning, things crack and creak. I have more than just an occasional grey hair on my head. I get random back aches. Anything past 10 pm I want nothing to do with.

But the other change I’ve noticed is my low blood sugars. I have no idea if this has anything to do with getting older, but when I used to get low, I’d start to feel badly, I’d treat the low, and within 10 minutes I’d be back to feeling normal. A lot of the times I was able to power through and continue what I was doing, even if I was low.

Lately when I get low, the lows are more intense. They hit me head on and I often have to stop what I’m doing. But more than that, that low, awful feeling lingers! Even when my blood sugar is heading back to normal, I still feel awful- shaky, light headed, weak, and just generally out of it. It’s like the recovery from a low is taking much longer. And I’m stuck with a hypo hangover. It sucks! And a quick google search showed that I’m not the only one to have these hypo hangovers. There are forums full of diabetes talking about a similar phenomenon. Luckily, it doesn’t seem to be the case for all my lows.

There are so many factors that could have affected this longer recovery from my low. How much food I had eaten previously, the amount of active insulin I had, how quickly my blood sugar dropped, what I used to treat the low, how recently I had exercised, how many other lows and highs I’ve had recently, the amount of time I’ve had diabetes, my age, the frickin weather for all I know!

I’m looking forward to my 30’s, all the exciting changes, and even the not so exciting ones. And hopefully I can keep the hypo hangovers to a minimum. Cheers!

 

The Sugar Finger

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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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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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The pain is worth it

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I listened to the voicemail while sitting at a college basketball game, trying to make out the words over the roar of the crowd. It was the local humane society calling about my foster dog. I had to take him back to the shelter for a couple days and was supposed to pick him up this afternoon.

“….potential adopters….looking at Ragnarok….call later with an update.”

rockycuddleRocky might be adopted. This had happened once before with my first foster dog who I had for 4 months before he was adopted. The mixed feelings were not unexpected, but I could feel my heart sink a little while simultaneously feeling excited that Rocky may be adopted. After over 4 weeks together, it was inevitable that we had formed a special bond. I had learned to love his quirks and enjoyed his company, I was looking forward to seeing him after our few days apart. But I reminded myself that as a foster, the goal is for him to be adopted. I had done my part. For various reasons, I knew I wasn’t going to adopt him, this was the best possible outcome.

rockyoutsideThe second call came at the end of the game. They were going to adopt him, he had found his forever home! I was so elated for him, but I knew I would miss him. That evening, I cried as my boyfriend and I reminisced about what a great dog Rocky is and the good times we had together. “This is hard.” It was true. It’s hard to say goodbye to an animal that has found a place in your heart. Why did I keep doing this? Why did I keep fostering dogs knowing that when they get adopted, the happiness would also be accompanied by a little bit of heartbreak?

Was the pain I was putting myself through really worth it? I thought about this. This is not the first time I’ve been in this type of situation. I live in a very transient college town, every year for the past 3-4 years, I’ve had a handful of close friends move away. They graduated their masters or PhD programs, or got residencies, fellowships, or jobs in other cities. Every year it was hard to say goodbye, but the friendship we shared for the few years they were here was and is still worth it. Knowing these people would leave in 1-4 years didn’t ever stop me from befriending them. The pain of saying goodbye was worth it.

I would even go as far as to say that I go through a lot of pain with my diabetes. The physical pain of being pricked and poked constantly with needles, of dealing with the physical symptoms of high and low blood sugars, the emotional pain of difficult days and the relentless effort it takes to manage type 1 diabetes. But I go through this pain so that I can be healthy. The pain of my self-management is worth it.

And so it is with fostering. I love knowing that I’m helping a dog by giving them a break from the crowded, noisy, overwhelming shelter. I love knowing that I’m helping a dog become more adoptable by working with them in areas they might need some more training. I love the companionship they give me while I work from home and the smile they put on my face when we’re playing or snuggling together. And I love knowing that they end up in a loving home. So while it’s sad to say goodbye after the time we spend together, the pain is worth it.

670G: a poem

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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 blog turns 5!

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IMG_8097What better day to celebrate 5 years since I started writing my blog than on Giving Tuesday?! While a lot has happened in the last 5 years for type 1 diabetes management, there is still a long way to go to get as close to a cure as possible. And today, if you donate to JDRF, your match will be tripled! Talk about a great way to celebrate this milestone!

Here’s a look back on some of my 5 favorite posts from the past 5 years. Obviously it was hard to pick just 5! Enjoy!

  1. These spooky diabetes moments from this year’s Halloween, October 2017
  2. A scary situation, told using Bitmojis, June 2016
  3. Diabetes Blog Week- I can, May 2015
  4. CGM, go to bed. An ode to my continuous glucose monitor, May 2014
  5. Why me?!, December 2012

Runner ups:

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.