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.
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.
Last week I entered a time capsule. It was dark, damp, and cold as we prepared dinner after hiking into a fog so dense that I was shocked when we came to the fork at the base of Sam’s Knob, left to the creek and right to the summit. We had crossed the entire field in front of the mountain without once seeing its mighty figure in front of us. We headed left towards the creekside campsites that I remembered from many years and times before. In fact, I camped beside Flat Laurel Creek during my first ever backpacking trip. That trip, maybe ten years earlier, had started much the same way – with a rainstorm forcing us to pile on every layer we had brought within the first few hours. This time, turning off the parkway and into the parking area for Sam’s Knob, we were the only car save for one. The two guys in the other car were milling about while we worked with raincoats and pack covers to protect ourselves from the intermittent rain showers that threatened to soak us and our gear before we began. They, young, clean, and looking a little lost, wandered over and asked, “Hey, would this be a good time for a hike?” It was chilly and windy, nearly 6 pm, raining lightly, and there was surely standing water in the trails. “Absolutely not,” I said. “This would be a miserable time for a hike,” as my hiking buddy continued to layer and arrange our supplies. “You should come back tomorrow,” I concluded, as we hoisted our packs. “It will be beautiful then.”
That’s what we were banking on anyway. We’d delayed the trip by one day, hard for me once I have my mind set on the woods, but it promised to be a better plan. While it had been raining for the previous day and night, sun and clear skies was forecasted. All we had to do was stay mildly warm and somewhat dry until morning.
I started this blog years ago, inspired by the lessons I learned about diabetes management and myself while backpacking. It diverged, first into kayaking and other outdoor adventures with diabetes, then into topics like acceptance and identity transformation. As I’ve gained experience and had successes problem-solving around unexpected moments with diabetes, like a malfunctioning pod moments before boarding a plane, insulin that overheated in another country, low blood sugars alone, and other occurrences that throw the brakes on every other priority you thought you had, these same moments become less noteworthy. It’s been more likely in recent years for diabetes to surprise me in a philosophical way. So, when I stuck a test strip into my meter to check my blood sugar while simultaneously tending the pan of lentils and rice heating on my little MSR camp stove, I didn’t just see the message, “WARNING – Temperature too cold. Out of operating range. See Owner’s Booklet,” I also saw my younger self; imagined her sitting by the creek ten years ago, overwhelmed by a shock of fear.
There she was, running through a script in her head of everything that could go wrong, of everything that she had to pack in order to survive in the woods. Should the list be so long for one night? Should the consequences be so grave? And then, to be foiled by something you could have never predicted so early in the diabetes game – a meter too cold to function. I felt like hugging her now, as I sat calmly contemplating the crane fly who had been drawn to the screen’s bright glow.
It occurred to me in that moment that sometimes you have to go back to the diabetes basics. It’s not all about the esoteric details of acceptance. Sometimes it’s about snuggling your meter in your sleeping bag as if it were hypothermic until works again. Of course, I gently removed the bug first. This time, I felt confident that my meter would resume functionality because I’d been through similar, though not exact, situations before. I also knew that I had packed an extra meter that was buried deep within the pack, likely in a warmer spot. I had reached for my meter preventively, not waiting until so much time had passed that I had no sense of what my blood sugar was. In short, I was prepared enough to be confident instead of afraid while addressing the issue. I don’t say this in an arrogant way. I fully anticipate moments of fear arising in the future – am planning on it. But zooming out on this small experience was a powerful reminder of how much I’ve learned and grown with this condition.
When we reached Flat Laurel Creek, we found it had become a swirling, copper-colored river. I was overcome by its transformation; still beautiful, but ominous in its power. Part of why backpacking has felt like more of an escape even than usual during this pandemic time, is that being outside reminds me that our expectations for constancy are not mirrored by the Earth. Because, as I discussed last post I cannot predict the future, being prepared becomes a process of planning for things to look differently than the ideal. With backpacking, this is a fine line, because weight really does matter and discomfort and danger are two very different things. Sometimes, I find that because my mind is so preoccupied with packing everything I need for diabetes, I forget the importance of all the other gear. I over-emphasize diabetes preparedness as if it were isolated from the rest of me, but as previously mentioned, diabetes is just a bonus on top of all the other processes of survival, like staying warm, fed, and hydrated. So, recently, as I considered whether I could cut some of the weight that I add with diabetes supplies by just being dirtier, aka packing less clothes, I thought about dropping my customary backup pair of socks. I mean, if they get wet I can just dry them out, right? After splashing through several puddles in my decade-old hiking boots that were once waterproof, I was thankful that I had not yet enacted that plan. My feet were wet and I knew they would be cold soon if I didn’t act. For me this feels scary. Once my feet get cold, they just won’t warm back up on their own, which usually leads the rest of me to chill. I didn’t want to become like my meter, too cold to operate. The clouds hung heavy overhead and the wind was picking up, making the little stove work extra hard as I fumbled around in my pack to find the smaller bag that contained my clothes. My hiking companion was off searching for firewood as an exercise in optimism that we gave up on shortly after. Unzipping the smaller bag, I sorted through the layers I had brought – booties, long underwear, and then, just as I began to worry that I had left my spare pair in the car, my teal wool socks appeared. I layered my down booties over them and curled my feet under my body as much as possible. After a (finally) hot dinner I was feeling, if not toasty, warm enough.
Right before curling into the tent, after scraping the last bit of dinner from the pan and tidying our food and toothpaste into the bear canister, the clouds broke and the deep night sky emerged into view. The nearly full moon shone a spotlight on my yellow tent pitched in the middle of a small clearing by the little fork of Flat Laurel. I can’t say I slept warmly, but rested peacefully, nevertheless. The next morning was perfectly cloudless – not even the lightest dappling of shadows. Our solitude at Sam’s Knob quietly evaporated and was replaced by the voices of hikers ringing out as they passed by. After a breakfast of strong instant coffee and sweet instant oatmeal nestled amongst the Mountain Angelica and Ash, we were off.
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.
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.
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!
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.
You are so beautiful. No matter where I am; in Asheville or in Chapel Hill, your irises shine bright as the twinkle of sunlight off Jordan Lake or a smooth icy cold pool on Flat Laurel Creek.
Your bluets are blushing with a joyous periwinkle hue,
columbine nodding in coral and gold –
Your lizards are scurrying: anoles, skinks, and more whose names I don’t know
turtles are recharging their sweet, cold bodies on hot, dry logs over opaque, brown water
and I am lost in both awe,
and an allergy-induced haze of high blood sugar.
You know it’s weird – allergies – inflammation – our body’s interaction with the environment – with the first kiss of sun – but year after year, the first week in May is a blood sugar roller coaster.
I get what I like to call, ‘false highs’, because I feel ok at first, but I’ll be stuck, way up in the blood sugar clouds, heavy with rain. Then of course that number starts to weigh me down, stress me out, the sluggishness compounds and I feel like doing nothing more than sitting in the midst of a garden full of peonies and tulips burst open into past-bloom and maybe wild roses and a bit of hyacinth although to tell you the truth I don’t like the smell of hyacinth but oh the honeysuckle and the proud plump snapdragons!
It’s the eighth day of blood sugar (reporting) and I’m over it. I’m ceasing the experiment due to ethical concerns for me, the participant.
You wouldn’t know it, but typically I’m very private about my blood sugar. This has been a big stretch. It’s been a good experiment and I have many, many thoughts to share after the holidays. For now though, I’ve realized that the extra burden of reporting has gotten me too in my head about this whole game and out of touch with the necessary and natural intuition that is one ingredient in my personal magic potion of blood sugar management.
Parting thought for now from a friend who also has T1D – “You can do everything the same way twice and not get the same results.”
Genius. So true. Also, so frustrating, if you think about it too hard. For me, having T1D is an interesting reminder that mind and body are one, and that listening to oneself is key.
So in sum – have a wonderful holiday however you choose to celebrate, and thanks for sticking with me this past week on the nighttime blood sugar sleigh ride, where Santa’s asleep at the wheel and every reindeer is in charge! [stretch metaphor 🙂 ]
I slept in an hour past my alarm (it’s ok, it’s Saturday) and my meter gave to me
a 196 mg/dl.
Yesterday I went to the gym in the middle of the day and a yoga class after work. I ate well enough and went to bed at 137 mg/dl, still with a little insulin working in my body (did not finish eating by 8 pm).
It’s hard to exercise after work and still get in a reasonably early dinner. It’s a strange trap to have to choose between the two.
But really, I think my bg crept up in the morning hours, as it does if I fail to take my 24 hr insulin around the same time every day. I had taken a little booster shot of it the night before, as is my habit on weekends. Typically I take my 24 hr insulin at 6:45 AM or so. I take a pretty small dose and it seems to wear off at almost exactly 24 hrs for me; meaning that if more is not injected to replace it, I will begin the slow rise. I meant to wake up at 8:30 AM, but my body knew better and kept on sleeping.
Health trade-offs. Not pleased about this. Blogging a number that is ‘too high’, gives me a new understanding of how kids must feel when they have to report their blood sugars to doctors or parents. Intuitively, we know that the number is not a grade or score, but it can sure feel like it. I wasn’t a kid when I was diagnosed, so I’ve always been a self-grader, but I bet it’s scary when you feel like your actions are going to be judged by others because of a blood sugar reading. I bet it feels like that sometimes even when others aren’t actually judging you.
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.