Fancy New Toys: BetaBionics iLet insulin pump

There is a non-zero chance that I am becoming a diabetes tech nerd. The long-awaited iLet Bionic Pancreas is the insulin-only version of the dual-hormone insulin pump that is the holy grail of insulin deficient diabetes management. BetaBionics has been working on a dual hormone pump for over a decade. While the dual-hormone version of the iLet is in human trials, they opted to release the insulin-only version of the pump. When the iLet release was announced in May 2023, I shrugged and signed up to be notified when it was available, figuring I'd take the new and improved loop algorithm for a test spin (especially since it has it's origins in the DIY looping community). I've had extremely good success with Tandem's Control IQ (CIQ) algorithm, but was micromanaging and manipulating the system by taking several insulin doses over the course and after a meal as the food absorbed, and taking occasional small manual boluses to bump my blood glucose (bg) into my target range. Ultimately, I've been administering insulin in a way that vaguely reflects the super micro boluses (SMBs) utilized by the iLet and several DIY loop algorithms. So in an attempt to relieve some of the mental burden of actively managing my diabetes, I got my hands on an iLet and took it for a spin.

At the time of writing, the iLet is compatible with the Dexcom G6 continuous glucose monitor (CGM), with a software update for the Dexcom G7 and Abbot's Libre 2 forthcoming (update: G7 approval in US in Dec. 2023). Similar to other insulin pumps on the market, the iLet is capable of downloading software updates via a phone app and pushing it to the pump.

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The Algorithm

The iLet Bionic Pancreas uses an algorithm called Dosing Decision Software to deliver insulin. Unlike other commercially-available automated insulin delivery (AID) algorithms, Dosing Decision is an adaptive closed-loop system that uses super micro boluses (SMBs) to handle insulin delivery. In addition to not having a programmed background insulin delivery (basal insulin, aka basal rate or just basal), the iLet doesn't require exact carb counting for meals. Instead, you have to be "carb aware", which means you train the algorithm to your typical carb counts for each meal. I struggled with this and we'll talk about that in a second.

Dosing Decision is loosely based on the DIY loop algorithm, oref1. There are several significant differences between Dosing Decision and oref1, including the inability to set temporary blood glucose (bg) targets or adjust your target range, as well as adjust insulin action times. It's safe to assume these limitations are a concession to FDA approval. More aggressive (and recent) iterations of DIY looping algorithms include the ability to forego meal announcements entirely (this algorithm is known as dynamicISF). 

Something to keep in mind when using the iLet: the algorithm does not work without a CGM, and there is  no way to limp the pump along for more than 72 hours without one. After the initial training period (aka first 7 days of use) you can manually input bg values at set intervals to keep the pump running in "BG-run Mode" for up to 72 hours. If a low bg is entered, the iLet will shut off background insulin for an hour. 

As a side note, the algorithm is aggressive in trying to prevent low bg (hypos), and you'll likely find that you need fewer carbs to treat a low bg. During pump training I was recommended 10g of carbs to start, and have found that 5-10g is typically plenty to bring me back into range.

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First Impressions: iLet Bionic Pancreas

My first impression of the iLet was that it's huge. It has a significantly bigger footprint (albeit lighter and slimmer) than the Tandem t:slim x2 and Medtronic Paradigm's that I used for decades. It's also very light, and the black and white, high contrast LCD touchscreen (boo touchscreens, but that's just me and my climber fingers struggling with them) can be read in bright sunlight and with polarized lenses, which is pretty great. There's a "button" at the top of the pump that you touch to bring up the unlock screen and turn on the backlight. It appears to be a pressure sensor of some variety, and I regularly hit it while the pump is moving around in my clothing or I'm fishing it out of a pocket or just holding it in my hand. Luckily, actually unlocking the pump requires deliberate (and often frustrating because I hate touchscreens) interaction. 

It's worth noting that the primary reason the iLet is comparatively large is that the pump casing is set up to take two reservoirs, one for insulin and one for (eventually) glucagon-equivalent and act as a dual-hormone pump. 

Left to Right: iLet, Tandem t:slim X2, Medtronic Paradigm (3.2mL), Paradigm (1.8mL)

Left: iLet, Right: t:slim X2

That size difference is even more pronounced when you use the case and belt clip (provided with the pump), which somehow manages to be massive and provides basically zero screen protection, combined with the flimsiest, weakest belt clip I've ever seen on an insulin pump (and I've had some rants about crappy belt clips). Obviously, my first order of business was to remove the case and belt clip (did I mention you can't even charge the pump with the clip attached? More on that later) and confirm I can, in fact, fit it in my pocket. The good news? It fits. Barely. I'll talk more about this shortly.

Left: iLet, Right: Case

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Getting Started

The initial algorithm training is short-lived (4-7 days or so) but I found it wildly stressful. The only input when you start the pump is your weight, so bg tends to run higher than normal for the first couple days until the algorithm has learned individual patterns. I had some issues with the algorithm horrifically under-estimating my insulin sensitivity in the evenings and driving my bg very, very low for hours. I actually had to announce a meal to get insulin on board in order to let my body actually use all the glucose in my bloodstream to, you know, fix the hypo. I had almost daily severe hypos during the first week on the iLet, and they were severe and lasted what felt like forever (but was really a couple hours). When I wasn't low, I was high, spending more time over 300 mg/dl in four days than I have in the past year.

It's worth noting that I am a bit of an unusual case as far as digestion and insulin sensitivity. Between the mild gastroperesis and extremely variable insulin sensitivity throughout the day, my ratios vary from 1u:25g to 1u:10g (carbs) and 1u:55 mgdl to 1u:35 mgdl (correction). Similarly, my basal rates historically range from 0.5u/hour to 1.6u/hour throughout the day. The point being, the entire premise of body weight to determine the starting point for the Dosing Decision algorithm was kind of a shit show for me.

Meal announcements are all relative to the "usual for me" meal, so if you generally eat 45g of carbs for dinner but sometimes it's 30g and sometimes it's 60g, it's appropriate to call all of the above "usual". The recommendation is to announce meals as "larger" if they're more than 1.5 times larger than your usual meal, and "smaller" if they're around half of your usual carbs. For small meals that are under 25% of a "usual" meal, don't announce it and let the algorithm handle it. As the algorithm gets trained, this works well and generally keeps bg below 180 mg/dl or knocks it back into range relatively quickly (and goes against 29 years of ingrained diabetes management techniques).

Being realistic with meal announcements can be hard, especially early on. If you find yourself calling a dinner "larger than usual" every few days, it's probably not actually larger and is more in line with your typical meal size. It turns out, I'm great at carb counting and lousy at recognizing what my typical carb intake is for different meals. The end result of this is I spent a lot of time trying to decide if a meal was less than, the same as, or more than my "usual" carb amount for aforementioned meal. I finally started calling the majority of meals "usual for me" and letting the algorithm handle the difference. This is unintuitive for me and feels like I'm courting disaster (even though it is definitely the appropriate way to do things). Note to self: most meals should, in fact, be "usual" when announced.

This brings us to the most difficult part of the iLet system for me (and probably other's who have been carb counting and micro-dosing insulin for years to get optimal results): being carb aware instead of carb counting. 

During the initial algorithm training period (first 7 days or so), I failed horribly at bracketing my carb counts and tagged more meals as "larger" than I should have, which resulted in insufficient insulin delivery when I actually did eat larger meals. The algorithm updates itself regularly, but it takes time and you have to be consistent, which is not my strong suit. All that said, training the algorithm to update ISF (or in my case, correct user error during the initial period) only takes a couple days. This bodes very well for changes in insulin sensitivity due to hormones, illness, or other lifestyle changes. 

Something to consider as far as meal announcements is that there is not a designated meal announcement for snacks. This is annoying for those of us who nibble throughout the day rather than eating regular meals. The iLet user manual recommends picking the approximate time of day and using the meal type associated with that for your announcement. If the snack has as many carbs as that typical meal, announce it using "less", "usual", or "more. If it's less than 25% of the carbs typical for that meal, don't announce it. This seems to work... usually. One workaround (suggested by the RN who trained me) is to designate one of the "less" meal announcements as a snack (assuming your snacks are 25-50% of the carbs typical of that meal). Since breakfast is not my meal of choice, I've tried using my "less " breakfast announcement for snacks, which seems to work okay, although I'm not convinced it's any better than using the "less" announcement for other meals. Rumor has it that there will be a Snack announcement added in an update, but who knows if/when that's actually coming.

The iLet Mobile App was updated in mid-2024 to mirror the pump screen, making it comparable in data viewing to the t:connect mobile app (at the time of original posting the app was very meh). It's easy enough to sync your pump to your phone and the app will automatically upload data from the pump when the app is open to the BetaBionics Cloud. Once data is synced, the Therapy Overview screen where you can view the data doesn't seem to work half the time and insists on claiming there is insufficient data (even if that is definitely not the case). When it does work, the data display is pretty nice. When looking at the insulin history, it helps to remember that the "basal" is the insulin being pushed unrelated to meal announcements to keep your bg in range.

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Site Change and Reservoir

Getting going on the iLet was pretty straight-forward, all things considered (see above discussion on training the algorithm and the initial adjustment period as it learns). The most significant difference in day-to-day pump use has been changing the reservoir and infusion site. There's an additional part (the adapter between the reservoir and tubing) and the packaging is excessive, especially when you consider that Tandem has bundled their identical needle and syringe into one package. 

The 180u reservoir has a functional maximum 160u after filling and priming. The plunger (red bit at the top of the reservoir shown below) doesn't have anything to prevent it from popping out, so you have to be careful not to overfill the res. You can (and probably should) mitigate this risk by setting the res on a hard surface while filling. 

The reservoir is connected to the pump and tubing using an adapter ("iLet Connect", which is similar to and serves the same purpose as the t:slim connection that has a couple inches of tail between the cartridge and connecter). This results in a rigid protrusion sticking out of the pump and effectively adding a couple centimeters to the footprint. The connector is used to secure the res in the pump and doesn't like seating smoothly before you rotate it 90-degrees to lock everything in place, resulting in a bit of wiggling and pushing to get things in place. On the other hand, the rotation does serve to make sure the tubing is securely connected. 

One of the super cool features of the iLet is the hella fast priming and insulin delivery. Like, super fast. Priming tubing during a site change takes literal seconds and I keep wasting insulin because I don't take my finger off fast enough. The iLet delivers insulin at a rate of 1u/3sec (20u/min). This is significantly faster than the standard delivery rate of the other commonly used insulin pumps (Medtronic, Tandem, and Omnipod have delivery rates of 1.5u/min, with a "fast" delivery rate of 15u/min available on some Medtronic systems). On the other hand, this means that big doses of insulin go in rapidly and if you're running an ultra-fast acting insulin like Fiasp or Lyumjev it can be spicy. 

Speaking of priming, if you don't fill the reservoir all the way and need to "prime" more than 25u, the prime stops and you are prompted to confirm that droplets haven't appeared at the end of the infusion site. I find it a nice way that the pump helps keep you from getting distracted and wasting a bunch of insulin. 

The pump auto-resumes insulin delivery after you fill a new cannula (if you select "yes") or complete the priming process (if you don't change your infusion set) with zero human intervention (compared to the t:slim which requires manual resuming, and the Medtronic pumps which don't resume delivery until you've backed out of the menu). Simply select the site type (teflon or steel) and cannula length, then hit go.

A couple things to note when it comes to site changes and alarms... 

The pump gives an alert when an infusion site is 3 days old. There is no way to disable this. You can, however, accept the alert, let it navigate you to the site change menu, and then back out without going through any of the site change process. Boom. Problem solved. 

The low reservoir alarm goes off at 20u (standard), and then again at 5u. Once you're at 5u remaining, every time the pump delivers insulin it's notifies you of the low reservoir. Annoying, yes, but quite useful if you're like me and run things aaaaaaaall the way down.

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Charging

The iLet can only be charged with a mag charger, which makes charging slow. The recommendation is to charge it 10-15 min a day, and I strongly suggest doing this (I've been charging it while I have my morning coffee). The battery drain isn't too bad, but seems to be 15-20% per day with a projected battery charge lasting 4-5 days. I haven't run it down past 60% because I don't want to sit around charging it for an eternity. On the other hand, you can charge the iLet using any high-quality mag charger (although they'll tell you that you must use the provided charging pad). Annoyingly, BetaBionics doesn't sell extra or replacement chargers, so you can't go buy a spare. Oh, and you have to remove the belt clip to place the pump on the charger. Dumb.

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Exercising

I'm going to start off by saying that my biggest concern when starting the iLet was how it would handle exercise. I fully expected that I'd need to find new and creative ways to work around the algorithm given the wide variety and frequency of my physical activities. I am happy (and, frankly, shocked) to report that exercise is one place where the iLet Dosing Decision algorithm excels, and if we're being honest, is the only place I don't have complaints. 

The recommendation from the iLet trainers is to disconnect during exercise if you think you may go low. This is stupid, especially for those of us who exercise for prolonged periods, be it hiking, long runs, or biking. The closest way to set a temporary bg target (like the higher bg target of Control IQ's Exercise Mode or Omnipod SmartAdjust's Activity feature) is to toggle on a Sleep schedule with a "higher" target bg. I've actually had fairly good success going into cardio pre-meals (aka fasting or at least 5 hours since last meal) and taking 10-15g of carbs 15-ish minutes before starting if my bg is trending down or sitting a bit lower than I'd prefer. This let's the food start kicking in (I'm not announcing it) about the time I start exercising so I combat potential hypos while side-stepping the algorithm delivering SMBs for the snack. If my bg trend is flat and above 90 mg/dl, I've been letting the algorithm do it's thing when I exercise.

I've done multiple fasted runs without disconnecting or taking any food on before starting with impressive results. Similarly, I haven't had any notable lows or highs after lifting weights (lifting often results in a bg spike, while running/cardio typically drops bg). There's no accounting for everything, so make sure to carry fast-acting carbs to treat any hypos during exercise.

My praise of the way the iLet handles exercise comes with one (massive) disclaimer: during the initial 3-7 days while the algorithm is training, do not try to exercise (especially cardio), as odds are good it will drive you into the ground and keep you there. Learn from my mistakes.

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A note on time in range

I considered putting this under "cons" but decided that wasn't fair to the algorithm or readers considering making a switch. Once the algorithm was trained, I've found myself running higher than I was using Control IQ and spending significantly more time sitting between 150 and 180 mg/dl. Recall that "in-range" for the Dosing Decision and CIQ algorithms is fixed at 70-180 mg/dl. This just so happens to be a larger range that what I prefer. The t:slim allows you to deliver manual boluses that I used to nudge my bg down to 100-120 mg/dl and prevent prolonged periods hanging out near the upper end of my range. Using the pump's target range of 70-180 mg/dl, my time in range for the past 14 days is 86% (compared to 91% on CIQ). However, my actual time in range for the past 14 days (70-160 mg/dl) is 78% on the iLet (compared to 85% for the most recent 14 days on CIQ). There's a moderate chance I'll see a slight increase in my A1C at my next doctor visit, but nothing that will be concerning from a medical outcome standpoint.

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Pros

- You can disable all CGM alerts on the pump except urgent low, which alarms at 55 mg/dl. This allows you to only have to interact with CGM alerts on one device (CIQ has alarms for out-of-CIQ-range that cannot be disabled). I wound up disabling all the CGM alerts on the pump and turning them on in the Dexcom app (you can also turn on alerts in a non-factory app like xDrip), since it's easier to access my phone than the pump. The only significant flaw with the CGM integration is that you can't adjust any of the alert thresholds on the iLet, so you either accept what they're fixed at or disable them and use a phone app for alerts. 

- Speaking of CGMs, the bluetooth on the iLet is vastly superior to other pumps. I haven't lost connection with the CGM since starting the pump, and that includes a couple weeks using a very old transmitter (that then proceeded to expire). Unlike the t:slim, it doesn't seem to matter if the pump is facing in or out, or is on a different side of your body than the CGM, or if you lay on it while sleeping. From a user standpoint, this is a huge win. 

- The infusion sites are identical to the Tandem equivalents listed on the BetaBionics website. Literally the same product (and factories, apparently) with a different label. This means that if you have extra Tandem supplies, you now have a bunch of extra iLet supplies. Yay!

Cons

- There is currently no ability to deliver meal announcements via the phone app, although this is apparently in the works. In this regard, Tandem has every other tubed pump on the market beat. 

Since I'm complaining, I also have genuinely no idea what the purpose of the diagnostic download is when you sync the pump to the app - and I couldn't find any guidance regarding what it's supposed to do. The app does, however, check for any sideloaded applications or if the pump has been rooted or jailbroken and will block you from using the app if it determines you have done any after-market modifications. Interestingly, this insinuates that the pump can be relatively easily hacked and used for DIY looping.

- There is not currently a Suspend feature. If you're going to disconnect to shower or exercise, the suggestion is to put the pump far enough away that it's out of CGM range so it's not delivering micro-doses. Word on the street is that a suspend feature will be included in a software update (the trial version of the pump included one), so hopefully that won't be too long of a wait. 

- There is no way to take a correction (or any manual) bolus. BetaBionics recommends you disconnect for 90 minutes if you take a correction with an insulin pen. Note that the correction algorithm is pretty aggressive, but it can still take 2-4 hours to get back in range. My experience has been that if you trust the loop the algorithm (especially with the "lower" bg target of 110 mg/dl) is good at knocking you back down while sticking the landing. 

- I know I already said this, but the iLet Connect sticks out from the pump and catches on things. Like pockets and belts. If you're wearing womans pants with annoyingly small pockets, the pump barely fits, with the iLet Connect adding over half an inch to the length (it fits in pockets better without it, but that's not an option for actual operation of the pump).

Annoying

- IOB is only displayed under "algorithm steps" and not on the home/lock screen. Unlike some other commercial AID systems, the insulin on board (IOB) includes basal insulin, so the displayed value is higher than many of us would otherwise expect. This is because the algorithm pushes everything as SMBs rather than establishing a basal profile that it deviates from. Functionally, this is similar to how Medtronic's SmartGuard and Omnipod's SmartAdjust work with the bg and insulin delivery averaging over a series of days, and mimics several DIY loop algorithms. 

- While you can adjust target bg (110 mg/dl = "lower", 120 mg/dl = "usual", 130 mg/dl = "higher), you can't customize the range - it's fixed at 70-180 mg/dl. There is not a way to set a temporary bg target, and if you want to run a bit higher for some reason, you have to go adjust your target value (or use a Sleep schedule and toggle it on/off as needed. I played around with this a bit and you can set a schedule that lasts for the full day so you don't have to mess around with times).

- The reservoir only holds 180u, making it not ideal for people with higher insulin needs or resistance.

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Conclusions

While there are several features of the iLet and the Dosing Decision algorithm that I don't love, the pump has some extremely good features. The use of SMB's by the algorithm has reduced the magnitude of my post-prandial spikes (no pump will eliminate them completely) and almost eliminated severe hypos. The hypo mitigation alone is a compelling reason to use the system. Convenience factors such as the black and white LCD screen that you can read in bright light and with polarized lenses and auto-resuming insulin delivery after a filling a cannula make interacting with the pump just a little bit easier. And don't forget the superiority of the bluetooth receiver that is able to maintain a basically continuous connection with the CGM, regardless of body placement.

Dosing Decision is the first loop algorithm (commercial or DIY) I've encountered that excels at aerobic and anaerobic exercise. The thing I was extremely skeptical of turns out to be the best part of the system for me, even going so far as to dramatically reduce bg drops during walks (and we all know that walks drop bg disproportionately). As much as trusting the loop can feel counter-intuitive when exercising, it really does shine if you let it do it's thing.

There are some features of the iLet and it's accessories that feel like lazy design, such as the large amount of packaging required for full site changes and the size of the iLet Connect that protrudes from the top of the pump. 

Overall, I've found the iLet with Dosing Decision to be a mostly user-friendly device with an algorithm capable of adjusting to day-to-day variations in insulin needs. The interface for announcing meals and infusion set changes are intuitive, although some features (namely IOB and CGM and transmitter changing) are significantly less so. The iLet seems to be a system that reduces the mental burden of diabetes management, especially for people with diabetes who struggle with post-prandial spikes and accurate carb counting.

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An Aside (4 months later....)

Ultimately, I decided that I was happier using my Tandem t:slim x2 with CIQ over the iLet. Most of this was related to the ability to manually adjust doses and maintain a tighter bg range (this is very much an individual preference and not a judgement on the iLet's capabilities). I was more stressed out about my diabetes during the 3 months on the iLet than I'd been in years, which is a clear indication that it wasn't the right system for me. 

I wound up testing out the BetaBionics 90-day return policy on day 89. To their credit, BetaBionics went to great lengths to make sure I was able to refund the pump and unopened and unused supplies. Their customer service team was top notch.

I firmly believe the iLet is a great system and would not discourage anyone from using it. Every AID system and algorithm is a little different and successful diabetes management is all about finding what works and is sustainable for you. 

My Body, My Choice - Family Planning in a Post-Roe World (the most misleading blog title ever)

Reproductive freedom is one of those hot-button issues. The Supreme Court's Dobbs vs. Jackson's Women's Health Organization ruling in June 2022 functionally overturned Roe vs. Wade and allowed abortion-banning trigger laws in 9 states (out of 13 states with legislation in place) to immediately take effect. Another 26 states are expected to enact some kind of abortion-restricting legislation in the near future. 

The recent Dobbs ruling doesn't just impact elective abortions. It's impacts include reduced access to reproductive health services, abortion pills, medically necessary abortions for things like ectopic pregnancies, and body autonomy on the whole. The ruling is forcing doctors to make impossible decisions about women's lives. Almost immediately after the Dobbs opinion was announced, stories about medical providers being forced to decide if a medically-necessary abortion was justified to save a patient's life started emerging, with hospitals stuck in a legal limbo where they felt they couldn't provide life-saving abortions without putting the hospital at risk.

At the end of the day, in many states a corpse has more right to body autonomy than a women. And don't get me started on the lack of support during and after pregnancy for low-income families.  

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Why am I so worked up about reproductive rights? If we're being honest, I'm always worked up about them. Reproductive freedom includes more than just abortion access - it's access to contraceptives, regular screenings, fertility treatments, prenatal care, and family planning. Every woman who has had to had to terminate a non-viable pregnancy knows that reproductive freedom extends beyond the over-simplified (and incredibly judgmental) "should have practiced safe sex and you wouldn't be in this situation" portrayal of anti-abortion groups. By restricting access to screenings and contraceptives, you increase the odds of people needing abortions. You force people into untenable situations. You ruin lives.

I know women who have had abortions. Be it failed birth control (nothing is 100%, even when used properly) or a much-wanted but non-viable pregnancy, they're just another case study in doing everything right and still being forced into a hard situation. Into a situation where you have to have an abortion procedure to save your life due to an ectopic pregnancy. Into a situation where the choice is to carry an unwanted pregnancy to term in a body so young that it's not developed enough to handle the stresses or face hateful rhetoric from strangers standing outside Planned Parenthood.

It has always frustrated me that responsibility for family planning and contraceptives largely falls on the people with a uterus. A guy wants a vasectomy and generally gets zero pushback or questions beyond "do you have kids and do you want them?". The procedure is fast and relatively noninvasive. But a woman asks to be sterilized and is subjected to a litany of questions and pressure, with the choices she is trying to make about her body and future second-guessed at every turn. Oh, you're of a child-bearing age and we don't want to sterilize you. You don't have kids yet and this is irreversible - you might change your mind because we know what you want better than you do. If you're able to convince a doctor to sterilize you, even at its most noninvasive you still wind up with incisions through your abdominal wall which take time to heal and pose an infection risk. And that's for tying your tubes. If you opt for a hysterectomy you're looking at 3 abdominal incisions plus a vaginal incision. While it's an outpatient procedure (unless they do an abdominal hysterectomy where they cut you open a la C-section), it's a lot of holes through muscles that need to heal and a significantly more intrusive procedure than a vasectomy.

But sure, other people know what I want more than I do. I'm going to change my mind because all women want to have babies. 

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Having never wanted kids and as someone who has some pretty awful menstrual cramps, I've considered sterilization for years. I brought it up to one of my providers when I was in my mid-20's and they felt strongly that I should continue using an IUD and not undergo an elective, irreversible procedure. Fair enough - elective surgery is a big deal and should not be undertaken lightly. To their credit, this particular doctor didn't imply that I was going to change my mind about having kids, although I've heard that sentiment often enough from people both in and out of the medical profession.

And along came Dobbs, throwing into question future access to abortions and family planning measures.

I'd been having increasing breakthrough bleeding and cramping that was occurring at a higher frequency and intensity. Fighting the urge to puke or curl up on the floor because your body has decided that it really wants to not have this particular uterine lining is not an experience I would wish on anyone. Factoring in the changing political climate and open attacks on reproductive rights and access, I decided to ask about getting sterilized again. At this point, if something happened and I needed to terminate a pregnancy, odds are good that it would be a serious struggle and may involve air travel.

This is how I know that my OBGYN is utterly amazing. Seriously, everyone deserves my OBGYN. I went in to an annual exam and told him I'd like to be sterilized. My doctor didn't even blink - he asked me if I wanted kids (prefaced by "I know we've talked about it, but I need to make sure.") and then inquired if I'd thought about what kind of sterilization I'd like. We talked about my cramping and agreed that a hysterectomy was the best fit. When I expressed concern about hormone replacement, he explained that they would leave my ovaries, so no early menopause for me. At no point did my husband come up, although I was prepared to lie and say he'd had a vasectomy to nip any issues in the bud. My body, my choice, no pressure either way.

As I said, everyone deserves my OBGYN.

Both my doctor and I expected to have to fight with my insurance to get the procedure covered. When I'd looked into sterilization in the past, it required a pre-authorization and a bunch of hoops to jump through, including an ultrasound, switching birth control methods to try and "mitigate the symptoms", and swearing up and down that your spouse also doesn't want kids. In short, while a vasectomy takes almost no effort to get covered, female sterilization generally requires you to prove that you're willing to persevere to make choices about your reproduction (or lack thereof).

Therefore, we were pleasantly surprised when my insurance didn't require a pre-auth. In fact (much credit to government health insurance), male and female sterilization were both covered. Can you say "equality in healthcare", anyone?

As you have probably guessed by now, I had a vaginal hysterectomy. The procedure went smoothly, my blood glucose levels behaved (shocking, I know), and I'm now at home playing the recovery game. Pacing around, not lifting, drinking lots of water, and generally going a little bit stir crazy because this is the longest I haven't exercised in over a year.

The day before my procedure I had a (to be expected) "what the hell am I doing" moment. Elective surgery, especially as a diabetic and someone with a history of being complicated in a hospital setting, is nothing to be taken lightly. While I've never wanted kids, what if that changes? What if I'm the one in a thousand who winds up with a perforated bladder or prolapse? In my case, the answers come easy (adoption, don't overdo it and things will be fine), but it's always worth taking stock before making an irreversible decision. For me, the certainty of never having another menstrual cramp and never having to worry about access to abortions if, god forbid, I needed one, outweigh the risk and uncertainty. 

My parents made sure to run through the "what if" list with me. What if something happens to Ev and a future partner wants kids? (that won't change my not wanting them, and also, adoption). What if I change my mind about kids in a couple years? (adoption). They reminded me that raising a family opens up a totally different set of experiences that many people find incredibly fulfilling. And adoption is not an easy process - it can take years and be incredibly stressful and expensive. There are no easy paths or answers. What's right for me may not be right for others.

My body, my life, my choice.

Post-script: the pathology report showed that I had endometriosis and a chronically inflamed cervix. Turns out, period pain was not in my head. Also turns out that endometriosis can be hard to diagnose. I'm extremely grateful that my doctor believed me and didn't question my experiences and complaints.

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If someone asks whether the Dobbs decision was a factor in my choice to get sterilized, the answer is a resounding "yes". While it was not the driving factor, I've been watching reproductive rights get eroded for years. Making this choice while it's still available was absolutely part of my mental calculus. I am now in a position where the lack of training of medical students on abortion procedures (even the ones that involve ectopic pregnancies) will no longer effect me. Where local legislation surrounding abortion no longer applies. Where access to contraceptives and routine screenings are no longer of concern. 

But I had to have an organ removed to get here. 

I am not advocating people go get sterilized to protest Supreme Court rulings. Body autonomy means that everyone deserves the right to make choices about their body. Have kids (or don't). Take advantage of family planning resources (or don't). Be open about your reproductive choices and struggles (or don't). 

My body, my choice. Your body, your choice. But if you want to keep it that way, I suggest you think long and hard about how you vote and what the knock-on effects might be. Reproductive rights are so much more than abortion access, and limiting them can be so much worse than simply forcing women to have an unwanted pregnancy.

To quote a friend:

"If you don’t want women dying, then they need to be provided access to the medical procedures they need. Anti-abortion laws hurt all women, not just those who make the choice to terminate a living pregnancy. Limiting reproductive healthcare will lead to unnecessary deaths of our sisters, cousins, friends, & many other women in our lives. I’m speaking from a place of deeply personal experience. I’m grateful that I’m still alive. My hope is that ALL women have access to experienced reproductive health facilities if they also find themselves in the position of needing a safe procedure."

Happy World Diabetes Day

November 14 is World Diabetes Day. For those of us who live with diabetes every day, it’s just another day, but it’s also an opportunity to raise awareness about diabetes, treatments, and stigmas surrounding it. Over the past few years I’ve become increasingly active in diabetes support communities, from basically converting my blog to product reviews and pro-tips, to co-hosting the Diacast podcast.

So today, I’ll ask you take a step back and think about the following:

    - Diabetes education and emphasis on mental health is sorely insufficient. Diabetics struggle with hundreds of small management decisions a day, societal stigmas and misconceptions (no, you do not “give” yourself diabetes and no, you can’t reverse it). Before you open your mouth to make an off-the-cuff joke about eating cake giving you diabetes, take a beat and think about the harmful stereotype that joke perpetuates. Because trust me, the cake will not give anyone diabetes, but you better believe I’ve been told by people in all seriousness that it will.

    - While I am very open about my diabetes, many other people aren’t. It doesn’t matter what illness or disease a person has, someone else’s health and management are not something you can control. Only I can manage my diabetes. Don’t offer unsolicited advice or stick your nose into someone’s management choices – if you’re curious or want to learn more, ask if you can ask questions, and then respect the answer. Avoid using absolute words like “never” and “always.” Try not to judge or push. Personal health is a very touchy subject for many people.

    - Using diabetes meds for off-label purposes (I’m looking at you, assholes using Ozempic for weight loss) are doing real, tangible harm to people who rely on those meds to manage their diabetes. Access to the drugs that many of us need to stay alive can be horrifically perilous (and not just in the US).

 

    - Diabetes is not a death sentence. Diabetes does not mean we're going to have complications (thank you, modern treatment methods). Your aunt’s dog’s diabetes is not a good thing to compare to my human diabetes. Cinnamon is not going to help me (or anyone) manage.

    - Diabetes does not have to hold us back. But it does change the equation. It introduces complexity and requires the ability to adjust and revise and pivot. It requires mental fortitude and a support network.

Today, I ask that you make the conscious choice to be kind and supportive of the people in your life (but especially the diabetics). Help combat misinformation and the stereotypes and misconceptions that we have to deal with every day. Support healthcare access so people can actually get their insulin or whatever meds they use to manage. Ask “what do you need from me?” instead of “why did you do that?”.

I consider myself extremely lucky to have such an amazing support network and friends. Your willingness to listen and learn and ask probing questions is a testament to you. Share that support with the people around you.

And while we're at it, let's keep funding research for a cure so that one of these days I can tell diabetes to go fuck itself forever.

So it's been awhile... and that's ok

 Some days it's hard to be positive.

If the past year and a half has taught me anything, it's that it's okay to not be okay. But even then, it's exhausting. I talk a lot about how mental health is important, how you should try to control what you can and accept what you can't. But saying it and living it are two different things.

I've been in a rut. My low-level disquiet has started to simmer and is trying to manifest as depression and obsessive behavior. I find myself obsessing over my blood sugars, skipping meals, fighting the urge to drink more than I should, and fighting a degree of body dysmorphia. And then just as quickly I swing the other direction and could not give two shits about my diabetes and subsist off of yogurt, chocolate, and booze (which, oddly enough, plays really well with my numbers).

I tell myself that it's because the world has changed over the past 2 years and has finally wore me down, that I'm terrible at disconnecting from the real world and work and need to let things go. But the degree of truth in that is hard to discern. I'm restless in almost every aspect of my life. I want to drop off the grid and go play and just be for a couple months, but I'm just don't know how much running away would make things better. 

Pretty sure this is the headspace where people shave their heads or get a big tattoo but really should not be making major decisions. 

I've been trying to find productive hobbies. I've been doing a lot of research for a podcast that a friend and I are doing (well, a reboot. It's called The Diacast and it's cool, you should listen to it). I've been doing a lot of weight training and trying to actually develop some muscle definition (it's starting to pay off, I now have discernible abs, although definitely not a six pack). But at the end of the day, it's just a distraction from the general discontent. But I have gotten really good at making sourdough bread.

So I try to remind myself to follow my own advice - that it's ok to not be ok, to give myself the same grace and consideration I try to bestow upon others. 

And just as a shameless plug (and cuz I really do think we're doing good work), you should go check out the podcast. Even for non-diabetics, I think it's fun and educational, and also my obsession with Snickers is front and center.

Anyways. Just figured I'd post something to prove that the blog lives and I swear I haven't given up on it, just... been distracted and unmotivated.

A Comparison of Diabetic and Non-Diabetic CGM Readings: questionable science at it's finest

CGM's are great.

There's nothing quite as useful as being able to see trends and get alerts if your blood glucose level (bgl) is going low or high. Ask any diabetes doc and they'll tell you that CGM's are a game changer, and ideally something every diabetic would have access to.

As I've become increasingly active on diabetes support servers and groups, there are a couple less-than-good things I've noticed related to CGM's. Most notably, newly-diagnosed diabetics who get a CGM almost immediately often fixate on the numbers and focus really hard on being "in range", i.e. keeping their bgl in a non-diabetic range. Which, when your pancreas isn't working the way it should, is simply not possible.

Something else I've noticed is that "old diabetics", that is, those of us where were diagnosed long before CGM's became available, tend to be much less obsessive about staying in-range at all times, instead focusing on long-term trends. I would argue that this attitude is a result of years of relying on finger sticks to get our bgl readings, and thus not being able to actually see the post-meal spikes or rapid raises or falls caused by food, exercise, and stress. Sure, we care about the numbers, but (anecdotally and based on observations) are more inclined to manage based on how we're feeling first, and the actual number second. 

In short, I would argue that diabetics should be able to manage their disease sans CGM before being given one, if only because the data overload results in some very stressful and unhealthy behavior that can lead to serious mental health struggles.

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Anyways.

I put a Libre on Ev. Part of it was straight up morbid curiosity about how a fully-functional pancreas behaves with the same food (and exercise) that fucks my shit up. And part of it was wanting to force the man who's agreed to spend his life with me (and has for well over a decade) to experience a few days in my life. Or at least, as close as a non-diabetic can get.

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A couple things that I knew but didn't really know until watching Ev's numbers for 9 days....

• Non-diabetics fluctuate throughout the day (yes, even fasting).
• They have some fairly impressive deltas (changes between readings, aka the slope of the line).
• They auto-correct thanks to that handy functioning pancreas, so their spikes and drops are kind of impressive, but less prolonged than the ones us pancreas-impaired folks get.
• Pizza gets everyone (also, it turns out that it takes 6 hours for my body to deal with it).
• Rice, Chinese, and Thai food result in a second spike after the meal, even when you produce insulin.

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We started off trying for a scientific approach - ya know, eating the same thing and doing the same exercise. Because pizza is a Diabetic's nemesis, obviously we started with that. 

The Pizza Experiments: Me on the left, Ev on the right

After pizza (where we learned that Ev has a bit of a spike a couple hours later, but nothing super crazy, and my slow-emptying stomach means I feel the pizza-effects for a solid 6 hours), we moved on to breakfast treats, aka muffins and donuts. This was not at all related to there being donuts in my office.

The Breakfast Experiments: Proof that donuts are bad for me, and muffins make Ev's bg spike

Given my propensity for issues with hypos during runs, we also did a comparison after eating oatmeal (I did my overnight oats mix, and he did regular oatmeal because apparently overnight oats are not his cup of tea).

The Running Experiment: Me on the left, Ev on the right - note the oatmeal spike and drop when the run started

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The pseudo-scientific approach stuck for two days, and then Ev got curious and started eating all sorts of carb heavy things that we normally would only eat sparingly. We discovered a couple things during this adventure. First, Thai food is amazing (duh), but does, in fact, give him a fairly substantial (for a non-diabetic) post-meal spike. Second, the initial spike was dealt with very quickly by his pancreas. Third, there was a second spike that aligns pretty closely with what I've encountered eating similar foods.

You heard it here first: some foods have delayed absorption resulting in multiple blood sugar spikes, regardless of if you're diabetic or not. For the record, this is not actually earth shattering or new information, but it was fun to see it in action with a functioning pancreas to compensate.

The post-food spikes were impressive, as were the post-meal drops... and the post-Thai Food spikes were real.

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All in all, it was a fun little science experiment, if only because it gave him a little insight into the stuff that goes into managing/monitoring your bgl and wearing the hardware every day. 

Ev commented that he found himself checking his bgl a lot (it's kind of addictive, as I can attest to), and adjusting his diet to try and keep his numbers level. 

It's also worth noting that he had a legitimate hypo one night, where the Libre read 58 mg/dL, that his body corrected (yay liver!). 

The highest number he hit was 168 mg/dL after one of his Thai food adventures. In general, his range varied from 75 mg/dL to 150 mg/dL. It's also worth noting that he had an a1c done with some regular blood work 6 months or so ago that came back at 5.1% which is a solidly non-diabetic number.

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When all was said and done, I walked away from this adventure with a bunch of screen-grabs of a non-diabetic that I can (and do) send to people wondering if their totally normal blood sugar response is actually normal. 

I also want the record to reflect that even us broken-pancreas people can do a passable impression of a non-diabetic.... as long as we ignore the difference in target ranges.

I want the record to reflect that, while Ev and his non-diabetic self is capable of 100% time in range, I managed an 82 hour streak in-range and a very passable impression of a non-diabetic. I am a god.

In closing, I was amused when Ev lost his Libre the same way I lost my first Libre: to a climbing rope in a rock gym.

The Dark Side of the Mind - the mental side of living with diabetes

I've talked before about the complexities of having a chronic condition and mental health. As a teen, I struggled with depression. Some of it, I'm sure, was the usual teenage angst, some of it probably should have been medicated, and some of it, I can only imagine, was related to having a chronic condition. Before I get into details, the ADA has a Mental Health Provider Directory to help match people with therapists that have experience treating diabetics. I strongly encourage you to use it if you need someone to talk to. 

People talk about grieving for the loss of "normalcy" when diagnosed with a chronic disease. I, too, preach it, but because diabetes is the only normal I've ever known, part of me questions whether or not I'm even allowed to grieve for something that I never had. Intellectually, I know I'm entitled to feel resentment and sorrow about the things that were denied me as a result of this disease; My life has been very different than most people's, and my diabetes is a large contributing factor to that. But when I went to therapy for my depression, I can't recall the role my diabetes played ever coming up. Looking back, I think at least one of my suicide attempts was a direct result of a feeling of helplessness and complete and utter lack of control over my body and its response to the world around me. I can't help but wonder if talking to a therapist who specialised in chronic conditions (or diabetes) would have helped me develop better coping mechanisms.

I am not alone in my battles with the mental health side of diabetes. My friend Kenneth also struggled growing up. He was able to lie about his health, miss injections, sneak food, and falsify logbooks. By the time his parents found out what was happening (which took a huge amount of effort on their part), they had to take him to the hospital for a DKA episode. Looking back, he thinks the reason he wanted to hide his struggles was a combination of guilt and depression, both of which can be helped by early identification and intervention. As we've talked, he's commented that he thinks therapy would have been beneficial, even though he wouldn't have wanted to do it at the time; it would have helped him understand that his parents were struggling as much or more than he was, and made it easier to understand their reactions.  

So what I've attempted to do here is break down some of the mental health stuff that we grapple with again and again. Some of it is pretty dark, all of it is based on personal experience (be it mine or someone I know), and a lot of it is uncomfortable. I am more than happy to talk about part or all of this with you, and point you in the direction of more information or help if I can. Because there is no way to sugarcoat it – diabetes is a bitch. And of course, before diving in I must state that I am not a medical professional and these are my thoughts, research, and personal experiences, not actual medical advice. While many of the terms (including diabetic distress and burnout) lack clear-cut diagnostic criteria, they are legitimate medical conditions and should be treated as such. Please refer back to the ADA resources listed above or talk to your medical provider.

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Control (or lack thereof) - Management vs. Survival

At one point, my parents took the entire family to a child psychiatrist. Because I was... difficult (Mom's word, not mine. Also absolutely true). At the end of the session, the psychiatrist asked my parents if they could learn to enjoy the chaos. They looked at each other and thought he was insane. Fast-forward to the present day and my parents agree that that response was not useful. But over the years, they learned to appreciate the validity of the comment – you can't control the diabetes and the kids, but if you can embrace the chaos, enjoy the ride, and smooth the bumps the best you can to have the best outcome possible. Keep in mind, it took them many years to realize the validity of the theory. You can't control it, so make it work. 

As a diabetic, the lack of control you exercise over your life is staggering. I rebel against the narrative that you "manage" this disease, because management implies that you can find a regiment that keeps things in check. But one of the "joys" of diabetes is that you can do the same thing every day and get different results. You don't have control over every minutia; you may do everything right and have a routine that works most of the time but you're still going to have bad days and you cannot prevent them.  

It's devastating when you realize that you will never win. You cannot beat a chronic condition when your own immune system is out to get you. I don't know if it's even worth trying, because your quality of life will diminish. We all have enough to deal with as human beings, be it life, relationships, jobs, school... it all builds on itself. We get sick (the regular kind), and we have all the regular mental struggles, in addition to managing a disease that does not play by any set of rules but its own. 

When I say you don't manage diabetes, you survive it, what I mean is that you are always half a step behind. I'll adjust my life, my packing, and my plans based on how my body is doing that day. Runs get shortened, hikes get aborted, lawn work delayed, and long drives cancelled because my body will not cooperate. Diabetes forces you to adjust and manage and be flexible, and if you cannot or will not bend to the whims of your disease, your mental health will suffer. And anyone who tells you otherwise is selling something. 

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Guilt

There are a lot of vicious cycles with diabetes, but guilt is one of the hardest to overcome. I've struggled with it on and off for years, despite knowing that nothing I did caused this disease. I know my mom struggles with guilt, wondering if there was something they could have done differently, if there was some unknown environmental trigger that caused my younger sister to be diagnosed a year after I was, and my older sister 14 years later. The unfounded guilt is probably the most difficult cycle for Kenneth. He still struggles with it today, but has learned over time that in any non-emergency situation, it's best to work on the immediate problem in isolation from everything else and then only later (like, the next day) talk about what happened and what can be done to prevent that kind of situation from happening again. Even today, I feel guilty for the impact my disease has on my husband and the activities we do, to the extent that sometimes I make up excuses to bow out of activities so I won't hold him back. I feel guilty for feeling guilty, and for having insurance that actually covers my supplies, and a support system that is amazing... there is nothing rational about it, and trust me, I know that. But the guilt is often a precursor to other, darker emotions, up to and including burnout and diabetic distress.

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Burnout

Even diabetics who experience burnout struggle with feeling like their experience isn't "bad enough" to be worthy of comment. While we hear stories of people experiencing burnout and not checking their BGL for months, running infusion sites until they get infected, and not bolusing for food at all, there are just as many people who experience burnout and test once a day instead of five times, stop eating food with carbs because they don't want to take insulin, and don't bother to correct because why bother. We are all at different places in our lives, and what qualifies as burnout for one person at this moment is very likely going to be different than what qualified as burnout for them two years ago. But a common thread in diabetics experiencing burnout is an increase in negative feelings towards their diabetes. Anger, frustration, depression... managing this disease day in and day out, it is often easier to ignore how hard it is, and many of us have a tendency to let the struggles accumulate until they are all we can see.

Overcoming burnout is challenging, but the following steps can help:

- Set small, achievable, and measurable goals

- Adjust and manage your expectations – don’t expect yourself to be perfect, and don’t compare yourself to other diabetics

- Seek out support and ask for help

- Don’t let perfect be the enemy of good – there is no such thing as perfect diabetes management, and “good enough” keeps you out of the hospital and lets you live your life.

Like diabetic distress, burnout happens and is not your fault. Many people experience burnout that lasts months to years, but that does not make them a “bad diabetic” or ensure they will have complications. Remember that diabetes is a full-time job that has to be balanced with life. Finding a workable balance, even if it means decreasing your time in range, is critical for your mental and physical well-being.

So if you take nothing else away from this blog, please make it this:

All burnout counts. It may run a spectrum, but it's all valid. Everyone different and what we define as "not dealing with it" varies. Don't use other people as a benchmark to judge your success. Don't let perfect be the enemy of good. If all you can handle right now is the bare minimum, you are still winning.    

 

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Depression

Here's the thing (and I debated even talking about this here, but decided that it's worth the discussion, despite the topic. This is gonna be a lot, so feel free to skip over it):

Diabetics have increased rates of depression and suicidal thoughts. And at some point, be it a result of burnout, feeling beat down, or a spiraling depression cycle (because don't kid yourself, there's a vicious, self-perpetuating cycle where you hate being diabetic, hate feeling like you're not normal, that you have to do all this extra stuff to stay alive, that this disease is going to control your entire life anyway so why should you bother?), its not uncommon for diabetics to realize that it would be so easy to just take a big dose of insulin and no food. To be very, very clear, this is a bad idea and I hope you seek out someone to talk to if you're in that kind of place. But even with diabetes, our livers dump glycogen into our bloodstreams in an attempt to combat the hypoglycemia, so, while you may have a diabetic seizure from the low blood sugar, you often pull through. Our bodies want to keep us alive. 

Both Kenneth and I (and many other long-term diabetics I've talked to) at some point took large amounts of insulin in an attempt to find an easy out. Our reasons may have varied, but both of us were struggling with depression. He was going through extreme diabetic burnout, and I was (inappropriately) responding to an external event. I wound up in the hospital after having a hypoglycaemic seizure, and the doctors pretty much went "oh, too much insulin. We know what happened, blame the diabetes," and called it good. Nobody thought to ask how I had managed to take double my daily insulin dose (and I was on a pump at the time, so they definitely could see that I had) and neglected to treat it. Keep in mind, this required three separate doses because of the maximum bolus limit on my pump. Let alone why I had done it at night, when the odds of someone finding me were lower. At no point did anyone stop and go, "I wonder if something else is going on?" The reality, unfortunately, was that I had been assaulted and didn't feel like I was able to cope with it – in fact, it took another 7 years before I told anyone about it. 

The problem many of us run into again and again is that doctors try to blame everything on the diabetes. Weight gain? Diabetes. Fatigue and migraines? Diabetes. Seizures? Diabetes, definitely not epilepsy. It seems like it takes much longer than it should to diagnose other conditions when you already have a chronic condition because first you have to convince everybody that it's not the diabetes. 

So yes. Depression, regardless of its roots, is alive and well in the diabetic community. 

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To quote another life-long diabetic friend, Sam, diabetes is not a disease of the weak willed. You have to be constantly aware of yourself and your environment. 

Burnout and feelings of depression and negativity related to diabetes is not rare in any form. Having to monitor everything you eat, every action you take, how much medicine you take and when, what you plan to do that day, etc. is exhausting. Add in the normalities of life like going to the store, going to work/school, going even to friends houses can be an extremely arduous adventure. You are constantly monitoring yourself 24/7 just in case you miscalculate something. Diabetics make hundreds of small decisions every day related to managing this disease, and it's exhausting. 

But we do it because really, there isn't another option. We do it because this is our reality. We do it because living with a chronic condition toughens you and makes you grow in unexpected ways. 

So for all those who stumble across this blog in search of validation or support, just remember: we are stronger than this disease and we will survive it. 

But also, diabetes can go fuck itself.