Backglamping

Today is my 39th birthday. That makes over 20 years of living with type 1 diabetes (T1D). I’m writing this in anticipation of my first podcast episode, which I’m hoping to record and air in August. A chipmunk runs by under the bushes outside of my porch screen. I am outside-inside here on the screened porch, which mirrors life recently. I have woken up in the woods enough lately to know that it is essential – at least for me – to me feeling like a real human. To feeling real at all. So, this post is about – hmm – what is real and what is not? What is outside and what is inside? What is helpful and what detracts from our relationships and connections to ourselves, the earth, and each other?

I recently found out that the Omnipod 5 app is now available for iPhone. After googling this, I learned that it became available in October of 2024! Neither my endocrinologist nor Insulet/Omnipod notified me in any way. I found out from someone else who happened to ask their doctor when the app would be released, only to learn – like I did – that it had already been out for over a year. This is wild to me based on the constant stream of notifications I get. I get a notification from my bank when I redeem my credit card points for cash. The bank emails me to say, “we are working on the thing you literally just asked us to do.” Then I get another notification when it is done. I don’t like these notifications. I get notifications from Omnipod or Dexcom when their product has been recalled – at least at some point (which has been a lot lately). Why not a notification when there has been a major advance that affects the ease with which I can manage diabetes? Because, believe it or not, it has been major. Now, I traipse into the grocery store with my fanny pack containing pretty much only what it would if I did not have diabetes. Granted, I still have at least one other bag full of backup supplies and a small cooler in my car, but from there I head out on foot with just a phone, my money, and my keys – plus a stash of several low treats such as Annie’s bunnies, Werther’s, and a honey packet (I’m still hoping one day that Annie’s will read my blog and elect to sponsor me). Before, I was toting at least two phones in my purse at all times, both of which I had to keep charged with different types of chargers. Now, I’m not saying this was horrible or anything – it was fine for the added convenience, but being able to manage it all from one place – to have my blood glucose and Omnipod both on my phone…it’s a mini game changer. In some ways, this makes me feel footloose and fancy free, but in another, as you might imagine, at times I feel more connected and tethered to my phone than ever before.

This is not so apparent in the grocery store. But in the woods, it suddenly sticks out like a bag of dog poop someone has left on the trail (maybe not that intensely, but please remember to throw away your dog poop). Back to the woods. So, this summer I have come to appreciate a third form of camping – somewhere in between car camping and backpacking. There has to be an accepted name for this already, but I’m going to call it “Backglamping.” Backglamping is what you do when you don’t want to see (or hear) cars, but you do want to have a pretty elaborate camping setup that you will post up at for at least 24 hours. Backglamping involves effort, but rather than the sustained effort of an 8-mile hike with a backpack on, it is a 2-mile or less haul in which you have a backpack and also an assortment of items carried haphazardly in your arms. This allows you to live the life of leisure at a site too far from the car for a casual back-and-forth, but not so far that you can’t decide to run back if the weather suddenly turns or you forget something major. This relieves a lot of the pressure of backpacking. Getting prepared for backglamping involves less diabetes-related anxiety about my survival, although it’s still essential that I have the supplies I need. But maybe it’s a more manageable emergency if I did forget something. I remember the moment I decided to start this blog years and years ago, miles into an overnight backpacking trip. I had discovered that the assumption I had made when I was diagnosed, that camping and backpacking were now out of reach for me, was false. As I have said time and time again, it just involves more planning. And I wanted to let people know! And what activity better than backpacking to prove that I can carry all I need to survive overnight in the woods. This is an empowering feeling when you have a chronic health condition that requires you to do this literally every day wherever you go. If I get to work without extra supplies on hand and my pump fails – well I’ve got to go home. That’s why I have extra insulin and diabetes supplies with me right now, and I’m just a few miles down the road at a coffee shop (I moved from the porch).

But backglamping has taught me something new. Really, a key goal is the same but the methods are different. With backpacking, it’s all about how little you can carry to be comfortable. You don’t want to be lugging a 60 lb pack down the trail. With backglamping, it’s about how much you can carry to be comfortable once you get to camp. On our last trip off of the Blue Ridge Parkway, this meant two trips, a frontpack and backpack, and extra items flung about our arms. The result was basically moving into our creekside campsite for the entire 4th of July weekend. And during the course of this venture into maximum comfort, relaxation backglamping, something shifted in me. Because if I’m being honest, ever since my diagnosis I have toted a little bit of shame along with those extra supplies. It’s not rational shame. I would never put down another for having to carry around a load of supplies and backup supplies, but it conflicts with my previously developed and relatively entrenched desired self-image as a low-maintenance person. To be able to just go. To need little. To live simply. This makes intuitive sense to me, but type 1 diabetes has changed the expression of this drastically. What I didn’t know when I was diagnosed at 18, was that aging would change the expression of this too (especially when it comes to sleeping on the ground!). And what I could have never guessed, was how much technology would change this too – in both directions.

As I said, planning and packing and creative solutions are essential. When I go camping or backpacking or backglamping, I now carry a power brick with me so I can charge my phone, because now my phone tells me my blood sugar and allows me to control my insulin. My phone is pretty important. What a piece of technology! But an iPhone has a different energy than an insulin pump or a blood glucose meter. An insulin pump wants nothing from you and you don’t get lost in it. You go to it for one reason – managing blood sugar and taking insulin. It doesn’t pull at you. On our backglamping weekend, my phone was within 20 ft of me at all times. And it had to be that way. Previously on a camping trip, my phone would hit the tent and lie there useless. We didn’t have service, I couldn’t call or text or use the internet (which was glorious), but still – its presence felt more demanding than my insulin pump did, even though that had technically been a phone too.

This is the power brick I use. It is made by Anker and stores a hefty amount of energy.

And I thought about how the internet-phone creates its own chronic condition. We are tied to something that has become – or at least feels essential for survival. To tote around a phone, keep it charged, look to it as the balm for boredom, uncertainty, lack of knowledge, trouble with recalling a memory or a fact, that’s a high level of dependency. That’s being tied to something like I’ve been tied to my diabetes supplies for years. And that’s just the state we’re all in.

I think the more zoomed out view is that no one is without these ties, phone or not. But when you are diagnosed at 18, you are at this moment where it feels like you could take off and fly anywhere. You don’t see all of the invisible ties around you, and you don’t think about what they do for you, what they allow. And this is how I view phone-based diabetes technology right now. When I was diagnosed, and for many years after, I used a meter, lancet device, and test strips to check my blood sugar, sometimes upwards of 16 times a day. I took short- and long-acting insulin shots using either vials or pens, which meant an average of 7 to 11 shots a day. I did not wear a continuous glucose monitor, so I did not know what direction my blood sugar was going in or how quickly, which resulted in a lot more over- or under-correcting, and therefore a lot more unexpected lows and extreme highs. For me, life with diabetes is way easier and more comfortable now. However, I still think about it all the time. The mental burden is different, but it’s still there. And I think I have to see this as separate from my relationship to my phone. We all have a relationship to our phones. For me, this relationship activates some of my other values – connection and engagement, but over-involvement with it takes away my capacity for both of those things. And using my phone to manage diabetes makes it more complex to set boundaries in that relationship, because I’m continually pulled back towards it. I don’t have any firm conclusions yet, just a growing awareness of the need for balance. That said, I have figured out a few tricks that have been helpful to allow me to use the phone as a CGM without getting pulled into its other features. First, I added a small widget for the Dexcom app to my lock screen that shows a little circle with my blood sugar. I can also click on this if I want and it opens my Dexcom app right up. I also added a large widget to my home screen where I can see my blood sugar with just a glance if I am using my phone for other functions, so I can easily do both at once without forgetting to check my blood sugar and then having to go back to my phone again (see pics below). But this is all still a work in progress. I would love to hear how others manage the duality offered by the phone of increased freedom from the demanding, cumbersome, and often painful tasks of diabetes on the one hand, and decreased ability, perhaps, to set boundaries related to engagement with the phone itself, on the other.

Look out for my first podcast episode! No firm launch date, but I’ll put up a quick post when it’s out. Oh, and one last thing. When you backglamp out of camp, you usually have less stuff because you ate most of your food. I like to carry a couple of empty trash bags to pack out all of our trash, of course, but also pick up any extra trash at the site and leave the place a little cleaner than when we arrived!

Am I pancreas or a woman?

I’ve taken shots on planes, shots on trains, shots on buses, shots on shuttles, shots in a car, shots in a bar, shots in meetings, shots at crowded dinner table seatings, and after my recent four days of traveling, for whatever reason, I have ended up more tired of shots than anything else.

Obviously, this is a diabetes blog, so I don’t mean liquor, not even in the bar. I mean insulin shots and the role they play in my life as pancreas.

I would say in a typical day, I take a minimum of 8 shots. On the trip, I took maybe 12 – 14 a day. I take shots as if I were a pump.

Some of you know a lot about diabetes and others less. Some of you know what an insulin pump is and how it works, but if you don’t, quick summary: people wear insulin pumps on their body using a site that can be either be connected to the pump by a tube or connected to a pod that is stuck directly on the body (no tube) with adhesive. Now, both of these are changed somewhat regularly, usually 3 to 4 days, and in the in between time, you don’t take the site off. You might disconnect your pump to shower or for a few other reasons, unless you have the Omnipod, in which case you just shower with it. The pump delivers a continuous infusion of insulin to the body.

The potential benefits of insulin pumps are numerous (there are also downsides that I won’t cover here). Some of the reasons why people wear them is so they can eat a more flexible diet, giving themselves insulin in a way that lines up more perfectly with their eating habits, think: many smaller injections a day to compensate for unexpected snacks or eating more at a meal than you planned. Also, you can reduce the stable background amount of insulin you’re getting to lessen the risk of lows during exercise. I can’t do that on my current insulin regimen, which, as aforementioned, is a bunch of shots.

I like to both maintain as tight a control of my blood glucose (bg) as I can, while also having the maximum freedom to eat and be spontaneous in my life, which for me has turned into a bunch of little micro-doses a day. Traveling amplifies this, because I’m not in control at even a base scheduling level. Flights might be delayed; I might not have time for a meal. When I do have time for it, I might be on a 5-hour flight, and then not be able to move around afterwards and help my bg come down with physical activity.

If you’re like: “I don’t get what she means by help my bg come down with physical activity,” please let me know in the comments and I will write on these topics in more detail or point you to some resources.

I have a busy year of travel and this trip made me wonder if my attempts to free myself of the burden of wearing an insulin pump has saddled me with an extra burden. If I’m going to mimic what an insulin pump could do with shots, should I just go ahead and get with the times?

When I travel, I like to let go of the ideal of a regimented lifestyle and be free to follow what comes. On this particular trip, the first thing that didn’t come was my Lyft. I was waiting by the door at 5 AM, but twenty minutes later I made a quick pivot, driving to the airport and parking in the econo lot. No bolus insulin in my system meant that missing one shuttle bus to the airport after a dead sprint across the lot sent my blood sugar straight up (potential moral: stress is bad for you).

Eventually I made it to my gate, just as boarding was set to begin. Still on the ground an hour and a half later (potential revised moral: could have skipped the sprint) it was clear that making my connection with only an hour layover in between would be tricky. But, by some miracle (apparently pilots can floor-it if necessary), I made my next flight after only a light jog. There was no screen on that plane (I had already watched ‘Elf’ on the last leg) and I had no internet, so I spent some time (2 hours) staring idly at the seat-back. I recommend this sort of in-flight meditation. Upon landing, I felt refreshed and ready for a three hour longer day. Of course, my blood sugar had been taking off and coming down all day, after around 8 shots over the course of the two flights.

I don’t want to give the impression that my trip was anything but pure joy – because one thing I’ve become good over 14+ years with diabetes is carrying the annoyance and frustration of diabetes alongside all my other emotions. This is one of my happiest evolutions in life with diabetes. I used to be so much more critical of myself and my ability to be a pancreas. But I’ve come to accept my imperfection in this way, because it allows me to do and enjoy so much more simultaneously. Some of the non-work-related highlights of this trip were:

  • Remembering my general love affair with San Francisco and its angles, colors, and vibe.
  • Reuniting with one of my best friends from high school. We explored the small mountain city he lives in outside of San Fran, looked at new houses for him and his partner to move into (which was an unexpected delight), and recounted all of our best inside jokes multiple times.
  • Racing from Palo Alto just in time to make it to a dear friend’s yoga class (why is my life full of so much racing? Do I need to leave earlier or just accept being late? Timeless questions). Afterwards, he took me to Mission Chinese, which was some of the best food I’ve ever had. The whole place is cast in a magical red glow. We ordered Kung Pao Pastrami, Spring Rolls, and Taiwanese Eggplant, and remembered all of the potlucks, adventures, and characters of college.

In summary, by the end of the trip I was left with the vague impression that all I had done for four was balance my blood sugar – but in truth, that was just exhaustion speaking. In the moment, I’m doing it all. Upon returning however, I did look over my bg records and identify a few times when I could have done less tweaking and perhaps gotten better results. So maybe in times of reduced control, loosening my grip on the idea of it could bring be a little bit more bg, and general, peace. It’s a thought experiment I may report back on.

Thanks for reading and happy new year!

Katie

 

 

Choices

On my first day of grad school, my pod alarmed in the middle of an orientation session and I had to rush home, still unsure if the bus I’d chosen was the right one to get me to my apartment. On the way, my iPhone 4 and I struggled with the spotty internet to email my advisor and let her know I wouldn’t be able to meet her – technical difficulties. That’s not really what I told her of course. I explained it all – because you can’t just explain a little bit of diabetes once you get going. It’s hard to just say “My blood sugar was low” or “My insulin pump malfunctioned.” I always feel like I sort of have to justify that statement with, “Oh and I have Type 1 diabetes. And I’m ok – I’ve just got to handle this.” The good-hearted people of the world want to know that you’re ok, which is touching. It can be really hard to give people who want to help and be there for you some reliable protocol to follow, because so much of diabetes is adapting to the moment. So much of it is being in-tune with your own body and responding in what might seem, to an outside audience, like a contradictory way from how you responded before. Sometimes I eat cake, sometimes I don’t. That doesn’t mean that in one situation I’m thinking about diabetes and in the other I’m not. It’s always there, presenting choices or at least weighing in on them.

This post is meandering because my thoughts are meandering right now. If there could be a central theme here, it’s choices and how they fit into our otherwise unpredictable lives. Diabetes reminds me that I make many choices in the day, from how I treat my body to how I communicate my identity, positionality and needs to others. It also reminds me that no matter how fixated we become on one choice or path or reality, our pod could always alarm right in the middle of it and we’d have to respond. This is another diabetes metaphor, but please don’t let that prohibit you from translating it to your own life if you are a person without diabetes (or not, maybe you don’t like metaphors). I’m just grappling with this – the contradiction between writing and reading our lives, both of which (I’m gently arguing), are quite necessary.