Attainable goals

As briefly mentioned in the previous post, I recently (in the last two years) starting experimenting with what it would be like to set goals in line with my desires. This seems basic as I type it, but I think what I was doing before was setting goals in line with my hopes or maybe more realistically, my shoulds. Even if it was a goal I wanted (desired) to accomplish, I would set it on a hope/should timeline. For example, I wanted to publish a book – by the time I was thirty – and I didn’t. Although really, I just meant that I wanted to write in a format that other people would read. But I thought I needed to manipulate this desire into a framework where I could measure it and check it off and somehow through that process feel good about it. I wanted to accomplish!

I’m 35 and I haven’t published a book. At the start of the pandemic I put together a manuscript of poems from my twenties and submitted it to a poetry publishing contest. I didn’t win and then I didn’t really pursue it further, in large part because the poems I had compiled didn’t speak to me the way they had years before. Almost all of my poems are about things that fly – birds, bugs, bats, that kind of thing. And searching for something. I guess maybe once I had gone off to find something else, these poems didn’t make as much sense to me as they once had.

The interesting thing about pursuing a sense of good feelings, aka accomplishment, through goals is that if you’re not careful, you’ll take the joy out of the process. I’ll never write a book by the time I’m 30. I’ve missed my goal. Should I even write? What’s it all even for?

So that is why last year I set my New Year’s Resolution to eat more cheese. I knew I wanted cheese and I also knew I would eat cheese, and aren’t goals just about fulfilling our desires anyway? I have to tell you it went really well. I’m not saying I did this to make a big statement to myself, it was more of a joke, but I did notice that if flipped the script a little bit. When I was first diagnosed with diabetes I got a food scale. I was a freshman in college and had struggled with times of obsessing over calories in high school. Suddenly I was sanctioned to restrict my food (albeit based on carbohydrates, not calories) in the name of blood glucose management. While I actually did learn a lot about carbohydrate counting that has been beneficial for me throughout my time with diabetes, it also contributed to the culture of restriction I was building for myself around diabetes management. And chronic conditions rarely visit alone – so I amassed other restrictions and before long I was running into many invisible walls hoping that if I could just stay within them, I would feel great.

These last few years, maybe starting in the height of the pandemic, have been some of my least restricted when it comes to diabetes. And I’m happy with my current blood glucose ‘control,’ aka levels. I want to be clear that this doesn’t mean that I abandoned blood glucose targets or stopped counting carbs or bolusing when I eat or any of the other self-management tasks, it just means that I loosened my grip on achieving blood glucose perfection. Sometimes this meant that I rested instead of taking a walk. That I ate foods I would not have eaten at other points in my diabetes journey, just because others were having it and I wanted to share. That I didn’t feel bad about having to correct for it later. Sometimes I did still feel bad for it, but I didn’t let that stop me from making that brave choice. I loosened my grip on the idea that somehow, if you took everything else away, perfection was even something I had control over.

Because you can’t remove all the other variables from life. There are other goals in my life besides my hemoglobin A1c or time in range that are really important to me and that I want to prioritize. In fact, my motivation for glucose control is to live the life I desire, so constant restriction will never get me there. By the way, food is just an example, not the point here. The point is that there are ways I was trying to control the situation through any means I had available. And for certain aims, that control worked, especially at various points in my diabetes learning journey. But, now when I step back and ask, ‘why the control?’ I’m confronted with the desire to be more fully present with my life. My goals are flexible and interconnected. Maybe I’ll write a book, maybe not. In the moment, other things might feel more important, like making plans with friends or taking a last minute trip with my mom, or doing nothing with a cup of tea.

*This blog contains my personal reflections on my journey only. I am not a medical provider and nothing in this blog is intended to serve as medical advice.

New Chapter

I love starting new things. I am what I would describe as a starter. Maybe that’s why I haven’t been writing lately, because I’ve been engrossed in new projects. But I’m always grateful when I return to older interests and pursuits. It’s a relief knowing that although maybe it is a long arc, I do circle back around to what I’ve invested in previously.

The new thing that I have on my horizons is really a culmination of many elements that have flowed together in my life. In about three weeks, I’m beginning a Master of Clinical Mental Health Counseling Program. It’s a two year program, after which I hope to create a multidimensional counseling practice, that involves in-person, written, and audio support. My focus is, as it has been for the past 10+ years, supporting people with chronic conditions, especially individuals living through acute or chronic instability.

My mission, as far as I’ve defined it, is to help people with chronic conditions live healthier and more joyful lives. My vision is that people with chronic conditions, which is really, at one point or another, all of us, have the time, skills, and support they need to care for their health, pursue joy and creativity, and nurture meaningful relationships.

Care for their health – I used to have a more prescriptive idea about what this meant, but that’s no longer the way I see health with diabetes or other chronic conditions. Sometimes caring for our health means moving more, sometimes it means moving less. Sometimes caring for my health means having ice cream with people I love and bolusing for it and going high anyway. Sometimes that’s what health means for me. My New Years Resolution this year was to eat more cheese. I’ve accomplished it well so far.

Health is also an individually and culturally personal concept. I’ve been proud to work for a diabetes advocacy organization over the past two years that recognizes this and creates space for its volunteers and supporters to define individually what health means and pursue that ideal as their right.

More about the specifics of the vision coming later as I’m sure it will change anyway, but broadly I believe that finding health, joy, and meaning as a society requires deep respect and care for the Earth as our sustainer. In this next chapter, I am excited to weave my original passion for environmental connection and care with my less expected calling of health and well-being with chronic conditions.

Blood glucose and the stress response

My travels to Ohio last weekend were more exciting, but very related to, this post’s title. I have been less interested in travel over the past year, as the COVID overlay has made everything just a little bit more tiring, both in the lead up and the recovery. Wearing a mask all day in the airport, making sure I understand the ever-changing travel requirements, and just being worried in general about the virus has discouraged me. But this past weekend I was happy to be getting out of NC and headed to Columbus for a dear friend’s wedding.

I arrived at the airport a little less than 2 hrs early and made it through security in less than 15 minutes. I settled into the gate to wait for my departure, when it became clear that the flight would be slightly delayed. My connection would be tight, but I’ve made tighter, so it didn’t seem problematic. But then the flight was delayed further. Now we would be arriving at my connecting departure time. Obviously, this would not do.

Before learning that there was no way I would make my connection, I had been entertaining myself by scrolling through my mind to see if I could find something to worry about. I get this way on travel days. I think it comes from the necessary process of asking myself, “do I have everything I need to survive over the next X days?” I usually stick a post-it note inside my front door: “insulin; a way to get insulin into my body; test strips, poker (lancet device), and backup meter; charging cord; contacts; glasses.” If I’ve got this stuff, I’m gonna survive, so I’m good to go. Still, the packing and double-checking leaves me with this feeling of, I’ve surely forgotten something important and, subsequently, a vague sense of unease. But, what I love about travel is that it’s unpredictability almost always jolts me into the present.

This was true when I learned that I would not be making my connecting flight, and even truer when the agent on the phone said, “We’re going to do everything we can to help you,” followed by, “I’m sorry, but there’s really nothing we can do,” in the same conversation. There were no seats on later flights that day from Charlotte to Columbus. “Could I fly into Dayton, OH and rent a car?” the airline agent asked. “Only if the airline will pay for it,” I countered. “Oh, I’m not in charge of that, you can write to customer service.”

We all know that when a company that has its own app and operates giant flying machines wishes for you to write somewhere, this means they intend on doing everything they can to not give you any money.

So I declined Dayton and also declined the option of leaving Charlotte at 10:30 pm Friday and arriving in Columbus at 10:30 AM Saturday (“What? how could this even be possible?..” you ask. The layover would have been in Phoenix, AZ. Don’t fly to Phoenix from NC to get to Ohio. Just don’t do it.)

The point of this story isn’t the weird details of how I got to Ohio, although I did make it. Ultimately, I decided to take the risk of getting on the flight (inspired by my previous success) and making it standby for a later afternoon same-day flight. The point of the story though, is what happened to my blood sugar during this whole ordeal.

Graph Alert!

Graph 1 shows my blood sugar during the hours before and after finding out about the flight delay. Notice how I spike around 11:45 and stay above 200 for much of the afternoon.

Graph 2 shows that I had to take 41 units of insulin that day to keep my blood sugar in range. The other bars show a useful comparison of ‘typical’ days.

Now, don’t let me fool you, there are no truly ‘typical’ days with diabetes, but to give you a reference, my average short-acting insulin use per day has been about 25 units a day over the past few weeks. So, even allowing for the necessary amt. of typical variability, 41 units is an extreme anomaly. Graph 3 shows how many units I used on my return day, which went off without a hitch. Graph 4 shows my blood sugar on a more stable Friday, one week later.

What is it about stress that tends to make blood glucose spike and also makes us more resistant to insulin? Well, it comes down to a few things interacting together.

First, let’s disentangle the state of being stressed from various potential stressors. It’s the process of becoming and being stressed that raises blood sugar – aka the response. I like the definition of stress provided in here, “Essentially, stress can be considered as anything that tends to change the control that you have over our body and our emotions.”¹ While I don’t much like this article’s terminology or conclusion, I do like this definition because there is a synthesis that has to happen between a stimulus and the stress response in our body. Some people are stressed by holidays – it’s not that holidays are inherently stressful – it’s our associations with them. When I heard that I would not make my connector, the associations I made were:

I’m going to miss the wedding
I’m going to let all my friends down
I’m going to lose the money I paid for this ticket

All of these thoughts were very paralyzing. I was also low at the time that I was trying to rebook my ticket and literally couldn’t figure out the order I needed to do things in. Interestingly, it was diabetes that got me back on track. Once I recognized that I was low, I stopped frantically flipping between my American Airlines app and my web browser, and hung up the call line I was waiting in. I ate some Annie’s gummy bunnies (sponsor me, Annie’s?) and took some deep breaths. I then realized that I would survive and everything would be fine.

But my blood glucose had already received the signal that it was go time. And in truth, it was. I had to make calls, decisions, perhaps hustle from one gate to the other, so it was great that my body was ready for that. When we get stressed, either physiologically or mentally/emotionally, the body releases certain chemical signals and hormones, namely epinephrine and norepinephrine, to prepare itself to take action.^1,2

Brief aside – I hate the term ‘fight or flight.’ It’s overly binary and it leaves out freeze. Personally, I first exercised freeze, as previously described, and then I chose to fight respectfully on the phone with the first American Airlines rep who I talked to, before moving to schmooze, which is really another key omission in the term. After schmooze, I finally landed on plead, which was really the ticket.

Anyway back to stress hormones. So when the body releases these ‘stress’ hormones, they stimulate the liver to actually produce glucose (what, the liver can make glucose? Read about that here and see some cool diagrams).³The liver releases that glucose into our blood stream, thus raising blood glucose levels.

So at this point, maybe you’re making some conclusions. Perhaps you’ve decided that stress is bad for blood sugar. This used to be my perspective too. Now, however, I would say that it depends. In truth, my body is doing what it’s supposed to do – preparing me to handle a situation. Wow, thank you, body. An important conclusion though, is that your response to stress really matters on a physiological level (I’m looking at you too, people without diabetes). There are a couple of ways I’ve learned to manage the effects of stress that I typically deploy with varying success. During my travel day, I tried to keep some perspective on the issue at hand. I had a support network to help me out if I was stranded, I had a cellphone to call customer service, and above all, I’ve been through things like this before and been just fine. So I reminded myself of that, did some deep breathing, and remembered quicker than I could have that I could handle the situation. The second thing, and this is the most important in my mind related to blood sugar, is that I no longer get as stressed about being stressed as I used to. Earlier on in my diabetes days, I would be watching my blood sugar climb over the course of the day and get so distressed about higher than normal levels. This would then perpetuate the stress cycle and I’d be left with higher than usual blood glucose levels for days. I think that over the course of my time with diabetes, I’ve lessened my expectations for consistency in how I feel day to day, moment to moment. I’ve also tried to let go of that idea of perfect, normal blood sugar, and employ more gratitude for my body’s efforts to get back to stability. I don’t always succeed, but it’s been a relief to try.

The sources linked here will provide you with more information, but remember that no source is perfect or absolutely complete and that no one person’s experience of diabetes is representative of the whole.

People with and people without diabetes, please let me know in the comments how your blood sugar/body reacts to stress and some of the ways you deal with it!

Sources:

“And the pitch, it’s a delayed flight! She knocks that stressor out of the park!”

A case for pencils

Well, now that we’ve accepted that uncertainty is foundational, I feel relieved. It’s kind of a burden to pretend like you could possibly know anything for sure, from what is going to happen, to who you will be tomorrow. This pandemic period has been a time of forced and uncomfortable introspection for me; seeing parts of myself that I could ignore or hide when things were in a more predictable system, like fear and selfishness and loneliness, all the emotions (or are these emotional concepts?) I find myself seeking to control, if not stamp out completely.

In this battle with self to control, I have relied on planners. I would even call myself a planner. I have three virtual calendars, one personal, one for each of two jobs. And then, on top of that, I keep a paper planner. I love my paper planner. It’s a little notebook with calendar pages and blocks for each day where you can write details. I don’t actually write in it nearly as much as I used to, but I use it to visualize the map of my month.

This year’s calendar was full of plans written in pen. Things that were solidified because the tickets were booked, the arrangements were made. I’ve crossed through them all, but I still see them and am reminded of the shadow year running parallel to this actual reality that I find myself in. It’s like my expectations, which had become almost a script, are there, hovering in some liminal space.

This morning, as I was doing some planning, I stopped myself (in the nick of time) as I reached for a pen. Have I learned nothing?! I opened the nightstand drawer and grabbed a pencil, reassuring in its impermanence. Something strangely comforting in embracing, instead of the script, the fact that in truth I had no idea what would happen.

This past week, carrying the weight of a backpack once again, I started thinking about maps. The broad outline that illustrates what trail you are to follow, but tells you little about what you might encounter along the way. For us, that was sunshine and a little fog, a few joyful people passing by, wild ponies, and the layers of Blue Ridge Mountains that provided us refuge. It was a fuel canister that I thought wouldn’t light, a campsite that we hoped would appear before it finally did, an evening windstorm to fall asleep to. It was a reminder that as I spin around in little circles, the mountains go on being mountains.

And I think to myself, isn’t it strange that we draw the map of our lives as we go? We draw it to fit and then act like we were following some predetermined path, imagining that we are in control of our direction. I think this is beautiful, really, that we are able to pivot and then convince ourselves that we knew where we were going all along. I think about this in light of diabetes and where it continues to lead me – on to new stages and challenges. My newest challenge with diabetes is that I forget about it. It’s not that I forget to take care of it, rather, whereas once I resisted it and later I embraced it, now I just sort of do it. It’s always there, keeping me on my toes, but running in the background. Chronic conditions become just another weight in the backpack that we carry (have I mentioned that I love trail and river metaphors). And yesterday, as I wondered why I felt so mentally tired after what was otherwise not a very difficult day, in the middle of a global pandemic in which I am aware to a greater extent than ever of just how privileged and lucky I am, I remembered – oh, I have a chronic condition. And if I’m being honest, I have multiple, because diabetes is never just diabetes. And that was comforting too. To know, to have an explanation. To feel justified in my exhaustion at the end of the day, yet no less certain that I would pick up the pack tomorrow.

When I started writing this I got stuck here. Because I like to have at least a small glimmer of a point, you know, when I write. And I wasn’t sure what it was. Partly, I think I’m just really into planning in pencil right now, as if it were a creative act. I’m into the idea that I won’t be done in this process of knowing myself with diabetes, of knowing myself at all. I’m into the idea that I can set down some of the need to control, because my pack already feels a little heavy some days. And then I started thinking about some of the media that I’ve been consuming during the past few months, particularly after listening to Brené Brown’s recent ‘Unlocking Us,’ podcast, On My Mind: RBG, Surge Capacity and the Play as an Energy Source. For me the most salient point was the first that she made, being that if something was on her mind, she had found that likely it was on our collective mind as well; it’s just we don’t always share the things we feel troubled or embarrassed by. That and the part about Surge Capacity, in which she referenced the work of Tara Haelle, Your ‘Surge Capacity’ is Depleted – It’s Why You Feel Awful. I admit, I haven’t yet read the article yet, but in listening to Brown describe her takeaway, I was reminded of a conversation that I had recently with a friend about this process of creating a ‘new normal,’ around Coronavirus and whether or not that struck me, as someone who has created a ‘new normal’ around a chronic condition, as an apt way to describe what we were doing. I really appreciated the insightful question, because it’s easy to forget even as a person with diabetes all of the work that goes into the creation of normalcy every day, so for someone else to draw the connection was validating. And thinking about it, yes, I do think that Coronavirus has presented us as a society with both the fear of an acute crisis and, basically, management tasks that are very like living with a chronic condition. It’s also introduced the sort of uncertainty that I’ve tried to conquer related to diabetes for years – the kind that makes you feel like if you could just plan everything out enough, you could know what was going to happen with your blood sugar and you would know that you would be safe and able to do what you feel like you should be able to do in this body. Hmm.

So, the world has a chronic condition with clear and not so clear management tasks, and like any chronic condition, people are managing it in a host of different ways. And, like I’m experiencing with diabetes, the process of finding normalcy tricks us into thinking things are normal, and we forget about all of the work that we’re doing to get there. Two other things come to mind here – one being a part of Celeste Ng’s book, Little Fires Everywhere, right after Lexie has an abortion and Mia tells her (something like) that she’ll get through it, but it will be something that she always carries with her, informing who she is/her future. I’m also watching Call the Midwife right now, Season 9. In Episode 2, Sister Julienne says something along the lines of (paraphrasing), “So, I have to accept the world the way it is, rather than the way I wish it to be.” Take from these connections what you will. For me, it reminds me that I have accepted diabetes as one of those things that I can’t put down. A good reminder, because it’s easy to forget what we and others are carrying into any new situation – the layers that begin to stack up when we’re all under collective stress. And in this situation, I think, also hearkening to diabetes management, that it’s just about making the next best decision with the information that I have in this moment. Maybe this tiring time is a good reminder, since there are certain things I can’t let go of, to shed some of the burdens that I’ve wrapped diabetes up in, like a need for absolute control or a need to function at a higher capacity, as if it wasn’t any work at all, or shame about the negative emotions that sometimes come along with it. And to remember that while it may be a little heavy at times, carrying it along with me is necessary to get to wherever (and who knows where that is, really) I’m headed next.

Slowing Down

Why haven’t I been writing? Months ago I promised a Chapter 2 to follow my last post about Costa Rica. I thought that more posts would follow that – about traveling around the globe for friends’ weddings, conferences, and maybe a little vacation. I had a busy year planned. And yet, now, here it is nearly July and I find I haven’t been more than 30 miles from my home since February.

Slowing Down.

What I’ve been doing during this time of social distancing. It’s a privilege that I have as a single woman with no children or even pets to care for. Up until recently I had a job, which made things still feel busy. I don’t have a full-time job at the moment, and I’m trying to figure out what my life and my schedule looks like without it.

Slowing down. A reset. I’ve been resisting this idea hard. As I think back over the last couple of years, I feel like I’ve been living my life in leaps and bounds. Sprinting towards the next goal without pausing at each milestone along the way. And I wouldn’t say this is unique to me or has even been by choice.

A big part of it is the society we live in. Things move fast – too fast sometimes for reflection. Maybe part of it too has been the pressure of diabetes. For 14 yrs I’ve lived my life on a schedule aimed at balance. A consistent wake time, consistent carbs at each meal, daily exercise everyday, sometimes multiple times a day, whether I really feel like it or not. And the self-improvement articles and health educators (like myself) will often tell you that just this is the recipe for health. “Once you get going you’ll feel better.” “Exercise is the best medicine.” And I actually believe it’s true. But I think this mindset, combined with a taxing chronic disease and a personality type leaning towards perfectionism can get out of control.

I certainly feel like I’m running on vespers sometimes. Running on the diabetes treadmill: time to eat, first take insulin. Now blood sugar will likely spike even if I called the dose right, so it’s time to walk. Maybe walked a little too much, time to eat a snack, and that’s just one meal cycle. That doesn’t take into account sleep and rest; sometimes I want more of it, but I know if I linger in bed my blood sugar will start to rise or maybe it’s falling and I’ll end up feeling worse later. There’s no easy answer. I’m not looking for one. I’m just recognizing the cycle that I feel like I’ve been on for a long time.

And this cycle bleeds over into other realms of my life. Pushing past what feels right into the territory of ‘shoulds.’ Lately it’s started to feel right to write again, but about what I don’t know. Because life doesn’t look like any of us thought it would. So I’m going to keep taking it day by day. Maybe this is Chapter 2 – because Chapter 1 was all about finding myself for the first time as a woman with diabetes in a new country, with a new group of people. And this Chapter is about meeting myself here, now, with very little else to distract me. I mean apart from the imminent dread of the news, but looking inward, maybe this is an opportunity for growth, as they say. Or just an opportunity to slow down and feel.

Chapter 1: Hace doce años (12 years ago)

Hace doce años. Twelve years ago. That’s what I kept saying when people asked how long it had been since I studied abroad in San Joaquin de Flores, a small town outside of San Jose, Costa Rica. Twelve years ago I had flown on an airplane only a handful of times and never spent a night out of the country. On the flight down, I remember journaling, fizzing with anticipation, and suddenly realizing that maybe I didn’t know how to speak Spanish. I could sort of write and read in Spanish, but I started thinking of what I’d want to say and found that the words just weren’t there. I hadn’t yet learned to speak flexibly, describing things instead of using one staunch word, while shaping with my hands and body. I love speaking in this way really – like teaching a yoga class without stating the names of postures, but instead painting a picture of the body’s movements. At the time though, the thought was intimidating.

More intimidating than Spanish was my lack of familiarity with diabetes management. It might seem like I should be over writing about diabetes, but diabetes is just never over. It keeps evolving and I with it. When I first went down to CR, I had been living with Type 1 diabetes (T1D) for almost exactly two years. I’d managed diabetes while living in the dorms at UNCA, working at a summer camp, a folk school, and at that point through half of junior year.

When I landed in Costa Rica twelve years ago, the first thing I noticed were the trees. I couldn’t stop gaping at the trees, squealing about the trees, asking our teacher Esteban about the trees. On this recent trip, after I asked a third person to identify the current árbol of my affection, a British pal exclaimed, “Americans love trees!” I think that’s a bit of a broad stroke, because I can tell you that I definitely led the tree fandom among our group of 14 or so American students.

The second thing I noticed was that suddenly I was having to state my needs a lot. Also, suddenly I had a lot of needs, or at least that’s how I felt. This was difficult for me on many levels. I am an independent person. I have always been grateful that I was diagnosed with diabetes after I had left home, effectively as an adult, because I would have fought against the notion of anyone else sharing in my management. That’s the story I’ve told myself anyway. Told myself that I could manage it on my own and probably just as well as my pancreas could have. For the first couple of years after I was diagnosed, I maintained a white-knuckle grip on normalcy. I worked so hard behind the scenes; not just on achieving what I thought had to be perfect blood sugar, but also on stifling the emotional and physical burden of managing a condition as demanding as T1D. I told myself that I could outsmart it. I told myself that if I gave in to its demands, I was weak. I tried to hide the anxiety and worry that was filling me slowly to the brim.

I know that sounds dramatic, but it wasn’t at the time. It was slow and subtle and by the time I got to Costa Rica, I didn’t even realize it was happening. I was prepared to have the time of my life. Yet here was this chronic condition in tow (one that I would not be able to recognize or name as such until years later. I wasn’t just supposed to be tramping through the jungle, I was supposed to be partying with my new friends, trying new food, open to all experiences. And of course, I was supposed to be completely carefree. Isn’t that the study abroad, or even the American college, myth?

But I felt like I had a new shadow. The specter of diabetes was following me on every excursion, in my classes, walking down the streets. And I had to explain it as part of me. But it wasn’t a part of me that I knew. I was strong and healthy and physically capable of keeping up with anyone. I had built all of that into my identity since childhood, playing softball, camping with my family, kayaking and snowboarding throughout high school, and just generally loving physical adventures. I also loved trying new foods, connecting with new people, experiencing life differently than I knew it in my standard routine. That was who I was.

It was the first time I’d introduced myself to people who were meeting me as a person with diabetes. In the US, my friends and family all knew me as Katie who suddenly got diagnosed with diabetes. They knew me first. Now I was worried that people would think of diabetes first.

The truth is that I wasn’t just embarrassed, I was afraid. And it was really the first time in my life I had experienced that kind of fear…fear for my life. I was a pretty unafraid kid. I wasn’t reckless, but I had a sense of my limits and they didn’t really encroach on what I wanted to do. Now suddenly fear had crept in. What if I go low? What if I’m alone? What if I’m tired and forget my bag in the trunk of a taxi and the driver leaves with all my medical supplies and I die? It was like the cork had blown loose on the possibilities of what could happen and how it might lead ultimately to my demise. Then there was just your standard, everyday long-term complications of diabetes to worry about. I was afraid that if I let my blood sugar spike out of “normal” range, I would definitively develop kidney disease, neuropathy, etc.

I had started practicing yoga in high school and had a sense of how to calm myself down, so I tried, often. But diabetes would always creep back in. Sometimes I’d try to meditate and breathe long slow inhales and exhales, but then I’d realize I was low and I’d have to stop and double-check with a finger prick, wipe off the blood with an alcohol swab, find a snack, eat, and suddenly there I was, thinking about the power that diabetes had over me again.

I worried that people thought I was making it up. Not diabetes, but everything I had to do for it. If you don’t live with a person with diabetes, you can’t know how many tasks go into it every day. If you live with someone with diabetes but don’t have it yourself, it’s impossible to conceptualize the amount of decisions and thought that that it takes every day. Even if you’re highly empathetic, you just can’t know. And after 14 years of living with it, I believe that if you are a person with diabetes, eventually even you stop realizing how much you’re doing – both externally in action and internally in planning and calculations.

Studying abroad in Costa Rica was one of the best four months of my life. Yet I felt isolated by and even ashamed of diabetes at that time. I was afraid that going back would mean relieving those emotions, that I’d be pulled back into shame. I felt guilty that it had been so hard to just enjoy my life. A few really scary things had happened while I was there too. I had at least two intense lows while I was alone, one in the jungle (I hear you, why did I wander off into the jungle alone?) and one in a hotel room. I also ran out of insulin after leaving some of my back-up at a lodge on a weekend excursion. I had to obtain more without the guidance of my endocrinologist, and it was my first experience feeling the full nature of my dependency on an external source for my survival. How it could stop everything else. How fear and anxiety suddenly flooded my body when I thought about not having the insulin I needed. On top of that, I couldn’t get in touch with my endocrinologist at home (we did not have cell phones then! And the call your doctor, wait for them to call you back long-distance model was just not working). Eventually, a protracted game of phone tag ended with my mom as the middle woman translating my endocrinologist’s advice, which was to take only half the dose of the type of insulin I was given. Had I taken my dose as normal, I could have had a severe low blood sugar overnight.

Diabetes was part of why I stayed away from Costa Rica for so long, so I was surprised to realize that it was also a big part of what brought me back. Three days after I landed, the diabetes camp began. We awoke at 5 AM and departed San José as the sun was just beginning to enliven the colors of the city. Although we drove off into the mountains, we arrived at the camp in no time – the start of three very full days ahead of us. Three days of diabetes multiplied by about 80. So much diabetes. Everyone, from counselors to campers, living and playing and eating and sleeping with diabetes.

Diagnosed at 18, I never went to diabetes camp. I had also never worked at a diabetes camp before. As I was learning the system, I began to transition from paying primary attention to my own body, to guiding my attention towards any signs of low blood sugar I could spot in the kids. This was an interesting shift. Suddenly my own diabetes felt lighter. My brain had been unleashed to do what it is always doing but on a larger scale: strategizing, monitoring, and attempting to balance blood sugar. But here it was, finally, outside of myself.

At the end of day one, I laid down in my bunk bed, exhausted. My cabin co-lead told me that the doctor and nutritionists would come in at 12 AM and 3 AM to check every campers’ blood sugar. She said that they might even check mine. At first, I reacted to this with something like horror. No one else, save maybe for nursing staff at the endocrinologist or hospital, has ever checked my blood sugar. It’s my blood sugar. But then I was like, “Hmm…so I wouldn’t have to worry about my blood sugar overnight…” I could go to bed without that subtle background fear of having a low. That thought was nice, comforting. And that’s how I went to sleep. They didn’t check me after all, but I slept hard through the night knowing that someone else was monitoring the campers. I awoke the next morning feeling grounded, ready to start the day.

For more about the camp and the rest of the experience, stay tuned for Chapter 2!

View of the soccer/games field at Campa Dia Vida.

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

Dogs and diabetes

Hi Friends,

I’m writing to share a piece I submitted to Diabetes Daily as part of an effort to promote the new fundraising campaign by Life for a Child (LFAC) that features stories from kids with T1D in Bolivia.

Check it out here: Profiles in Strength: A Story of Type 1 Diabetes in Bolivia

One more thing – I suspect I’ll stop posting my blog on Facebook soon, so if this is the way you find out about new entries, please follow me so that you’ll be notified in your inbox. You can always unfollow or adjust email settings if it becomes too much! And please feel free to share this blog with anyone who you think might enjoy it.

Thank you,
Katie

131(?) mg/dl

Yesterday was a wash.

Literally, it was gray and pouring out. I stood by my window at work and felt dampened by the weather.

Figuratively it was one of those rare days when I forget my meter at home – and this left me unmoored, confused, uncertain.

I do this, I would say, about twice a year. I realized it after walking and busing almost all the way to work. I can’t park at my work, so the thought of going back home felt to my maximum-productivity brain like a real waste of time.

In truth though, not having my meter really isn’t safe – I typically can feel my low blood sugar coming on, but I learned yesterday that I really overestimate my ability to feel where I am – so much of that ‘feeling’ is really a complex set of predictions based on my last reading, which ideally is no more than 2 hours ago. And about the safety thing – my rational brain knows that taking the two hours of sick leave it would have cost to go back home for my meter, is a lot less than the amount I would have had to take if I’d had a real problem (read: very low or high blood sugar) because of it.

Every time this happens I think of the kids with T1D who I met in Bolivia who can only test two to three times a day, max. Checking infrequently is their norm. I think of them and wonder how they manage when I feel so utterly lost.

A friend asked me how I was yesterday – I said I don’t know. I didn’t know. How I’m doing is very tied to my blood sugar, I realized anew.

Realizing anew is frustrating isn’t it? We realize, we forget, we tell ourselves it doesn’t matter, and then we have to realize anew!

Anyway, I ultimately did decide to leave work early. When I got home I was in the low 200’s. I took some insulin, did some yoga and then, as a reader so keenly pointed out in yesterday’s comments, of course went low before dinner. About 2 hours after dinner I was 130, an hour later I was 175…can I explain that? Nope. Not even a guess. Too few data points to guess. Correction dose, bed. I woke up at 3:51 AM at 150 mg/dl; at 7 AM at 131 mg/dl. Grateful to know.

“So what’s the plan?” I ask myself, because after forgetting my insulin pen one day, I installed an extra labeled in a plastic bag in our shared fridge. The plan is definitely, as of today, to store a backup meter at work. I have several from years past on different insurance plans, and I still have enough test strips left to get me through a mess up day.

*Reminder about the big, giant disclaimer: I do not have medical expertise and this is not an advice blog. I’m not saying that the way I manage is the right/safe way, or that my goals and targets are right/safe for anyone else, but rather I am simply recounting my experiences as a person living with Type 1 diabetes.

Diabetes Resolutions

I’m a person who loves resolutions. I love the celebration of shedding old parts of ourselves and adopting new habits built on all of the tremendous self-growth of the past year. That’s what the New Year symbolizes for me. Whereas other times of the year we resist change, both in the external world and the internal world, right around 12/31 we start to act like we think it’s the greatest thing ever.

So I was asking myself, in addition to my all of the resolutions I’d like to make in every other realm of my life, should I have a diabetes resolution? And then I decided, no. Basic diabetes management is a big enough resolution. It’s like asking your friend without diabetes what their health goal for the coming year would be and them saying, “Well, I’d like to start pricking my finger 8 times a day and counting all the carbs I eat and explaining very intimate details about my body to both my closest friends and to complete strangers multiple times a day. I’d also like to introduce a lot of self-shaming and restraint into my eating, exercise, and general lifestyle habits.”

I mean that’s big enough right?

But I was writing in my journal this morning and as I always do I made a note of my morning bg (this is not a ‘health journal’, just my journal journal), and I was moved to also note that the elevated number was likely due to late-night snacking. Now here, I want to make a critical explanation, because I hate overly simplified diabetes rhetoric. It makes it seem like, “Well, if those people with diabetes could just do what they were supposed to do, it’d all be fine!” No! my blood glucose could just as easily sneak high in the night without me having a late-night snack, if I didn’t have enough insulin in my system to cover the sugars my liver is naturally pumping out all the time (just like everybody’s is). And sometimes, not eating after dinner makes this more likely to happen – especially if I finished dinner early and had less insulin in my system overall, perhaps because it was a dinner particularly low in carbs.

The complexity of diabetes is what originally inspired me to write a blog. It’s like being part of a secret world – the ins and outs of blood sugar. I imagine myself like Mrs. Frizzle. taking her class to the pancreas for a day. So I thought, why not make a diabetes resolution and a.) use my blog for accountability, and b.) take you all along on the complicated journey that is every blood sugar reading.

I realize this plan has some flaws. People with T1D are gonna be like – “why would I want to read about her blood sugar when I have to manage my own?” And people without T1D are gonna be like – “why would I want to read about her blood sugar when I don’t have to manage my own?” But whatever, this is my resolution.

So here it is, stated clearly, my small diabetes resolution-experiment:

4 out of seven days of the week, I will cease eating by 8 pm unless I have a low blood sugar and have to treat it (treating it means eating something, FYI).

What this really means for me is that I’ll be prompted to eat dinner earlier and eliminate post-dinner snacking on those days.

I’ll post my BG every morning along with a brief explanation of my theories behind the number. I could be right, I could be wrong, and we’ll literally never know!