Does diabetes limit your life?

My dad came to visit me for Father’s Day this past weekend. After dinner one night we got to talking about my work and about how the landscape of diabetes and its management has changed over the years. He asked about my experience of living with diabetes and how it had changed over the past 12 years or so. Dad, who I probably haven’t ever talked as openly about diabetes with, was more willing to be curious than I previously remembered. He asked me: “So – do you find that it (diabetes) limits your life?”

What an interesting question.

If you had asked me two days after diagnosis, I would have started bawling and talked about all of the dreams I had that I could never do now that I had to tote diabetes around with me. Dreams like: hiking the AT, kayaking in a remote jungle, abandoning society with no cellphone or attachment to the outside world…

If you had asked me two weeks after diagnosis I would have given some sort of manic response cloaked in coping positivity, like, “No! It has made me stronger, more organized, and more appreciative of life!”

If you had asked me two years after diagnosis I would have probably given you some more truthful examples, like how hard it was to be a summer camp counselor only 5 months after I’d been diagnosed; to be chipper and on full-time, while trying to give myself shots, check my blood sugar, eat someone else’s cooking, sleep in a cabin full of 8-year-olds, and otherwise make sure everyone was safe and entertained.

And then there have been other moments when the thought of doing it and doing diabetes, was just too much. I’ve said no to weekend plans and trips with friends, stayed in at night because I didn’t want to have to keep strategizing about my blood sugar so that I made sure to be at a good level to drive a car.

But – and I may be conveniently forgetting something – I’ve never not done anything I really wanted to do because of diabetes. Maybe I’ve been more exhausted before, during, and after it, maybe it’s made me ask myself how important something was to me before committing, but I’ve kayaked in a jungle, have gone on long trips, and have otherwise lived the life that I wanted to.

And – what’s interesting is how the “life that I wanted” has changed. My desires seem to be increasingly able to co-exist with a life that gives me space for diabetes management.

Natalie Goldberg says our obsessions can be our inspiration – and I’d be lying if I said I wasn’t obsessed with diabetes. But I’d also be lying if I pretended that obsessions wasn’t a prerequisite of diabetes; either you’re obsessed with it upfront in order to manage the moment to moment decisions and tasks, or you end up obsessed with the symptoms of high or low blood sugar, and other short and long-term complications. And to say I’m obsessed with diabetes is really barely scratching the surface – what I’m obsessed with is what diabetes represents – the interaction between our bodies and our environments. Between the internal and external world. Diabetes gives you a front row seat to watch the effects of every bite of food, every step you take, every bit of anxiety you hold on to, minute of sleep you get, sunburn, bug bite, cold, allergy, all of it – it’s all a weird dance. Or orchestra. Or rowdy old-time band (represented by featured image taken at Shakori Hills music festival, 2018).

So, after traveling a long and winding mental road to an answer, I replied to Dad that the question didn’t quite fit for me anymore. It was the first time I’d realized this, that the answer required a reimagining of the question. Deciphering whether diabetes limits my life, or impacts it in positive or negative ways doesn’t make sense anymore, because it’s an inseparable part of my life and experience. And letting go of that qualifying, deciphering, and even meaning making, feels like a relief.

Waffle Fries and Celery Root

February can be rough. The days are short, the weather is temperamental, winter closes us inside of its blue shutters…

But luckily, we have created several traditions to get us through, one of my favorite being, in atypical fashion, SUPERBOWL SUNDAY!

I, like many of you, went to a Superbowl party a couple weeks back and found myself so INSPIRED. Let me preface this by saying that in between the 2017 and 2018 Superbowls, I watched 0 minutes of football. So, it’s always a fresh experience for me. I couldn’t believe how physically strong the players were. I was also very captivated by how delicious the various party foods involving potatoes were. There were waffle fries (not from Chick-fil-A!), homemade potato chips (in three varieties!), and baked potatoes with gruyere. So, based on these two observations, I added two resolutions to my list for this year: 1) workout more; 2) eat more potatoes.

When I got home from the party, my blood sugar, despite a lot of extra insulin and monitoring, was above 200 mg/dl. I don’t like this – I don’t feel good when my bg is high and taking extra insulin before bed is a little frightening because of aforementioned nighttime lows. So I put the potatoes on the back burner, so to speak.

I did start moving more though. Yoga and walking have been good, along with a class or two at the student rec center. So with goal #1 underway, I got back to the potatoes.

Recently, I ordered a dish with shaved celery root when out at a restaurant. Between ordering and receiving my food, I forgot about this, and when it came I thought I was eating hashbrowns. Fancy hashbrowns, but still. So this weekend at the grocery store, remembering my positive celery root experience, I decided to branch out of my cooking rut.

If you’ve ever bought a celery root (also known as Celeriac), you know just how unappetizing it looks in its natural form. Celery root is, in fact, so ugly that I can’t believe we discovered it was edible. I can’t imagine being that first person to look at it and think, “I’m gonna eat that.”

But someone did and I’m glad.

It’s really a vegetable that you have to tackle – which goes well with the general metaphor of this post. I used this recipe from Bon Appetit for Celery Root Steaks with Tomatillo Salsa Verde as a basis.

Except I didn’t make the salsa because I planned to just pile my other food on top of the steaks.

Here’s a detailed play-by-play:

  1. Scrub that thing! – I took my veggie brush and I scrubbed the root thoroughly, rinsing under cool water.
  2. Peel it! – I took a carrot peeler and shaved off the rough skin (yes, even though I’d just scrubbed it), until it had a mostly smooth texture. Then I used the scooped end of the peeler to get out the fuzzy, radish like whiskers (ugh) near the end and smoothed once again over the top and bottom.
  3. Preheat it! – I was already baking brussels sprouts, so my oven was on 450 degrees.
  4. Slice it! – I sliced it into rounds, about a 1/2 inch in thickness, until I’d cut up about half of it. Then I cut it in half so I could lay it flat and cut half-moons of the same thickness.
  5. Sauté it! – I added quite a bit of olive oil to a big cast iron skillet, set this to heating on the stove, and laid the slices down into it, turning it down to about 6. I let them sizzle on each side for about 5 minutes total, flipping impatiently. I think the recipe is correct – 4 minutes each side with only one flip would have given a better, golden brown to each.
  6. Bake it! – About 10 minutes on high heat for a nice, tender texture (recipe says until it can be easily pierced with a fork or butter knife).

Pro tip: if the steaks are tender but you want more of a golden brown look, flip them over to serve; most likely they are browned on the pan side.

So, how do celery steaks stack up to potatoes, ounce for ounce?

1 cup celery root weighs in at 66 calories, 14 grams of carbs, and packs a powerful punch of 2.8 grams fiber, according to google.

Potato comes in at nearly double all of the above (except fiber): 116 calories, 26 grams carbs, 3.4 grams fiber, per cup.

So to me, diabetically speaking, Celeriac is the clear winner!

Oh and finally, Happy Valentine’s Day.

 

 

 

FreeStyle Libre

If you don’t have diabetes (and you speak a little Spanish), you might think I’ve come up with a new intention for how I want to live my life, sort of a ‘take it easy’ non-attachment type attitude. She’s living free style, libre man. But if you do have diabetes, you’ve probably checked your bg on a FreeStyle meter and at least heard of the new device that was just approved for sales in the U.S., the FreeStyle Libre.

I both like and hate the tendency of medical companies to give chronic illness management supplies names that inspire images of smiling people flying kites on the beach without a care. I dislike this tendency because it’s a false promise. These words couldn’t attract us to the product if it wasn’t true that diabetes, like many chronic conditions, imposes it’s own barriers. I won’t talk about those right now – maybe later. But what I like, is that these companies are recognizing what is truly hard about diabetes: not simply the pain of finger pricks or shots, but the hassle, the baggage, the constant back-of-the-mind thought (as covered previously) that it inspires.

For the past few weeks, I’ve really been wanting a break. There’s nothing to do with this desire, no accrued vacation time to take, no money to spend that can buy it. And yes, there are some strategies that one could employ to alleviate some of the pressure in these moments, but even thinking those up and navigating their implementation is the opposite of a break. It’s effort. A lot of effort.

And then, suddenly: FreeStyle Libre Now Available in US Pharmacies

In case you’re not familiar, the FreeStyle ‘reader’ looks like a normal blood sugar meter, but it is equipped to scan a little sensor, about the size of a large quarter, that you wear on the back of your upper arm, in order to measure blood sugar in interstitial fluid. I bought myself a reader and three sensors. For the past ten days, I could know my blood sugar anytime I wanted to, but not when I didn’t. Unlike a continuous glucose monitor (CGM), which I’ve always resisted, the Libre let me remain in control of the amount of information I receive. As someone prone to over-management, this is ideal.

A couple of specific examples:

  • Saturday night I was driving myself and a couple of friends to a concert. About 30 minutes before leaving I scanned the sensor on my arm. 90 mg/dl. 5 minutes later I scanned again 85 mg/dl. I was dropping a little. I ate half a tablespoon of honey. 10 minutes later I scanned: 95 mg/dl – stabilizing and good to drive, probably some fat and protein from my dinner hitting me now too. Because of the Libre, I was able to monitor while getting ready without poking my finger 3 or 4 times in 20 minutes and getting blood on my outfit. I could eat the right amount of carbs so as not to skyrocket into high bg, but also allow me to drive, and be ready on time without stress.
  • Another night, I was about to go into the movie theatre with a friend (a lot of recreation this past week) and wanted to have some popcorn, which is my fav. We’re in line, just a few minutes ahead of start time, I’m wearing gloves, a puffy coat, and holding my wallet. I scan, bg is a little low, and I know how much insulin to take once we find our seats. Again, no fumbling, no blood, no running out of time. I feel magical, like a superhuman.

So here it is, the day after my sensor ended and I haven’t put on a new one yet. I feel like I just got back from a diabetes vacation. I feel restored. I’ll put the new sensor on soon, but I’m rationing them, because my insurance plan still doesn’t cover them, and while they are relatively affordable out-of-pocket compared to a CGM, test strips, or an insulin pump, they still feel like an indulgence at this point.

Indulgence. It shouldn’t be an indulgence to know what your blood sugar is, right? I feel like it should be, how do I want to say this…a basic human right. But it does feel like an indulgence, because I know that my many of my friends in Bolivia and elsewhere who are living with diabetes, can’t afford to check their blood sugar more than twice a day, on a good day. Here I am, able to scan willy-nilly, a luxurious level of management that is not at all equitable across the globe. And it is an injustice.

Today is Martin Luther King, Jr. Day – a day to celebrate the undeterred pursuit of social justice. It’s not always clear what this means or what the clearest path to it might be, and I often find myself uncertain of how to nourish solutions rather than feeding problems. In this situation, there are big questions I have to ask myself when it comes to wearing this device while others can’t. I haven’t answered them yet, but I do know that this is a situation to at the very least, recognize my privilege and remain aware that the current state of inequity in access to medical care and technology is not OK. It’s also a time, I think, like many (most? all?), to be grateful. I’m grateful to the developers of this technology, to those who’ve funded the research behind it, those who’ve advocated for its coverage by Medicare, those who will tirelessly advocate for other insurance plans to cover it, and for the new found freedom it has afforded me. Finally, it’s a time for action, to ensure that all children and adults with diabetes can enjoy more freedom from disease and greater opportunity for wellness.

leaves

Lately I’ve been on a ‘getting rid of stuff’ kick. I’ve given away several bags of clothes, donated books to the library, shredded mounds of semi-private information and bank statements, cut up clothes I should have already been using for rags, and just thrown some stuff away. One thing I recently gave away was a book called, Zen and the Art of Diabetes Management. Turns out, maybe I should have read it.

I don’t know if my shedding belongings is connected to my deeper desire to shed emotional and mental refuse, i.e. the crunchy, brown leaves of thought and preoccupation that long to fly free from the branches of my mind, but it’s possible. A note on this – I was recently out for a walk, when I came around the corner and stumbled upon a pile of leaves so high and long that I was immediately enraged at: leaf blower machines (they require so much gasoline), the thought that a homeowner would be so careless as to jeopardize the safety of all who walked and drove on the road (half of the street, on a curve, was piled six-feet high with leaves), and the fact that we thwart the natural process of composting and earth replenishment by bagging and throwing away leaves. I find it bizarre. Then I walked past the great wall of leaves, turned, and looked up at the nearly denuded oak tree whose branches twisted and furled in every direction. The pile was mostly oak. This one tree had blanketed the yard, filled the road, and was left standing above what it had discarded from the previous year. I smiled at its abilities. The wind blew and I walked on.

What a diversion, you say, from the original point of this post. But I’m getting back to it.

So, I’ve been going, very irregularly, to a Zen center for meditation with others. I find these accountability buddies help me very much. I don’t have to hold all that silence alone. And this past week there was a lecture, which I didn’t know about, but felt compelled to stay for (because I had meditated for 30 minutes and was actually calm enough to consider staying for an unexpected lecture). The teacher, a woman who exudes peace and goodwill, talked about an experience she had near the Zen-dō, seeing a plastic bag on the ground and experiencing anger, only to ask herself, “is it trash, or is it my mind?”

Her question brought me back to the tree and its pile of leaves. Here I was, painfully debating over whether to keep each t-shirt, each novel that I’d read or never wanted to read, and more than all that, deciding what I wanted to mentally let go of, and here was this tree, who had just let it all go. And I just expected it to, not even marveling at its abilities to grow and grow and grow, and then courageously release the product of its work. All this stuff, these thoughts, the richness of past experiences, they become our soil. We have them, we grow, and then the we move on. Needing and desiring to let them go does not mean that they weren’t good or that they are wasted – it’s just natural. It’s time, I thought, to take the mind out of it, stop deciding, and just to feel what is dry, crunchy, no longer producing fresh growth and let it fall to the ground, where it can be good again.

Back to Zen and the Art of Diabetes Management. I had read some of it – a good book – about managing diabetes with an attitude of peace. But currently, I’m trying to figure out how to manage feeling at peace while maintaining diabetes in mind. Remember the name of the blog, Adventurous Living with Diabetes in Mind? That is totally possible, but it sort of defeats the purpose of meditation if diabetes is in mind…doesn’t it? I thought that the point of meditation was to clear the mind of all thoughts…so nothing should be in there. Especially nothing as seemingly mundane as, ‘what’s my blood sugar?’

Sometimes it feels like my whole life is a pancreas meditation – instead of trying to get down to the truth of who I am in a sitting session, I’m trying to get down to the truth of my pancreas, ‘what are you doing buddy?!?’ And – ‘how am I doing?’ I had felt low about 30 minutes before I had to leave the house to drive to the Zen-dō, so I ate a few extra slices of apple. I checked about 10 minutes before I had to leave and I was 99 mg/dl, meaning I was fine to drive (I don’t drive when low, i.e. <80 mg/dl). Because the meditation was longer than usual, and I unaware of this fact until in the middle of it, my thoughts started to creep to what my blood sugar might have crept up to. Usually I take a walk in the morning after breakfast – I factor this movement into my insulin dose knowing it will bring my blood sugar down immediately. I hadn’t walked, but of course I’d limited my carbs at breakfast, but it had been a long time since I’d last taken insulin and I knew those last couple slices of apple wouldn’t have been reflected in my pre-driving number because it takes about 20 minutes for any change from what I’ve eaten to show up on my meter so…

Is it blood sugar, or is it my mind?!

We’re all up against a lot of obsessive thought. And here’s the thing, mine and everyone else’s matters and, often, makes sense. So I sat there during the Zen lecture listening but also wondering what my blood sugar was and how I would ever stop wondering about it long enough to be fully present. So I decided to feel. I started with my breath, how did it feel in my body, and then my heart, moving outwards towards my toes and fingertips. I felt good. I stopped feeling like a mind-pancreas in a body and began to feel like a whole being. I thought of blood sugar again. I went back to thinking about breath.

I got back to my car with my meter (where my mind had been part of the time) and checked my blood sugar, it was 139 mg/dl – hardly a number to worry about. I thought back to the teacher’s story, about becoming angry when she saw a plastic bag that someone had carelessly tossed on the ground, and then realizing she could simply pick it up, and put it in the trash (*yes trash, not recycling, because plastic bags clog the recycling machines so should only be recycled at grocery stores, where they have those designated plastic bag receptacles). When she realized she could take action, throwing the bag away, she felt a sense of peace and moved on about her work, she told us. I think I had this option too with my blood sugar. Diabetes takes a lot of action (and that action is required for health and in fact, survival). Something I’d like to work on in meditation is relegating the heavy thought to moments when action is needed. I knew I was safe in the Zen-dō, diabetically speaking. I could feel that I wasn’t too low or dangerously high, and I made the choice to stay. I could have left and dealt with my blood sugar, satisfied that piece of me that has to know, but I didn’t. And the koan for me, and everyone in the room, was to be fully there, blood sugar and all.

I don’t know. The end to this blog post is – I really don’t know. I’m in no way trying to minimize the necessity of thinking about blood sugar for a person with diabetes, but I’m thinking about ways to move towards fuller presence – unified body and mind – without layers of judgement, in regards to diabetes management. I’m taking recommendations, asking for them really. Maybe I should have kept the book, or maybe I just need to revisit the tree.

Travels with Diabetes, Part 1: Boston to Vienna

I returned about a week ago from a ten night trip spanning Boston, Vienna, and Innsbruck. See timeline below:

Night 1: Boston > Night 2: The sky > Night 3: Vienna > Night 4 – 8: Innsbruck > Night 9: Vienna > Night 10:Boston

Along the way I was blessed to have the company of my gracious hosts in various cities, my mentors at the ISPAD (International Society for Pediatric and Adolescent Diabetes) Conference, and others who are passionate about diabetes care and research just like myself. In fact, the abundance of miracles that transpired during my time has left me in awe. Still, traveling with diabetes, my constant companion, was as always, a little tricky. Diabetes can really be a pain – especially when your body is tired and out of its normal routine. So this post is going to employ grounded idealism – which I find is becoming my default (side effect of aging?) – and will follow a ‘challenge,’ ‘reward,’ ‘strategies’ format.

Challenge: Many legs of travel make for a lot of time on airplanes and lugging around luggage while sort of lost, eating snacky food all day.

Reward: Time with one of my best friends who has recently moved to Cambridge, MA. We explored the city, identified magnificent trees, ate vegan-ish food, and ‘played’ with her turtle Zeke.

Strategies to keep Type 1 diabetes (T1D) happy: I spent about 24 hours in Boston and had plenty of time Monday morning to take a long walk (thankfully the weather was magnificent) across the bridge (in view of the iconic Citgo sign), climbed on some trees, and moved for a solid hour. This brought my blood sugar down, increased my insulin sensitivity, and prepared my body for the long 7+ hour plane ride ahead. If you can’t take a long walk before your flight, some yoga or stretching is definitely better than nothing!

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Flight attendant“What would you like for breakfast?”  Me“Sleep.”

Challenge: Jet lag! And missed sleep while crossing time zones and traveling

Reward: A full day in Vienna

Strategies: So I guess this is always the case, but at the time the wonderful flight crew (thanks Swiss Air, I mean really, you should fly Swiss Air) brought around breakfast, it was 11:30 pm in my world and body. Still, I pressed on, drank another cup of coffee, ate half a croissant, and tried to prepare myself mentally to begin a new day. I learned that perhaps I approached jet lag all wrong. Having slept 0 minutes, I arrived in Vienna and somehow, although I don’t remember the process, made it to my hosts’ 4th story flat. I was graciously welcomed and then immediately fell asleep on the lofted guest bed for 3 hours. One of my hosts woke me and warned that if I slept any longer I’d feel even worse tomorrow. I remembered to check my blood sugar and was pleased to find it wasn’t so bad, 145 mg/dl or so. I took half my Lantus dose, because my schedule was all screwed up and I needed to begin working my doses back towards ‘morning’ and ‘night.’ And then I began the remediation process. After showering and drinking more coffee, I followed my hosts’ directions to Stephansplatz – the city center and location of the giant Stephansdom Cathedral, which I just learned from Wikipedia is one of the tallest in the world. I wandered among the young men in period costumes who showered me with flyers for the Mozart theater experience that I just had to see. I walked inside the giant wooden doors of Stephansdom, carved elegantly and polished, to enter the quiet cavern of worship. It was dark, as most giant cathedrals tend to be, but the stained glass scenes were vibrant and prayer candles lined the front iron rails. I added a candle to the bunch, walked slowly around the wooden floors listening to the echo of my footsteps, snapped a no-flash picture, and exited, emerging again into the light.

My next stop, after more meandering, was my host J’s yoga class at Feel Good Studio. This is what really saved me. Huge life tip: when traveling, look up local yoga studios and see if you can stretch out your body and shake off your jet lag. The amazing side benefit is that many studios offer new student deals, which means that often you might even be treated to a free class. J’s teaching style was just perfect for my state of being – a solid flow with individual attention and mindfulness every step of the way. He recommended plow, with heart lifted toward chin, as one of the ultimate anti-jet lag poses. Afterwards, although I fell asleep completely in savasana, I felt somewhat reenergized and ready to meet the next leg of the trip.

I’m going to break this post up, because it’s important to rest and not rush an adventure in its unfolding.

 

Revisiting my new year’s resolution

I’m using the bonus hour that I acquired this morning when a low blood sugar woke me up to write this post. Last night I couldn’t fall asleep. I was pleased that my blood sugar was in the 80’s, having come up from a slight post-dinner low and stabilized at this most ‘normal’ of levels, but I had the nagging feeling that it wouldn’t last through the night.

See here is my big blood sugar-sleep dilemma: earlier in the week I’d had a bedtime snack close to bed and woken up with high blood sugar the next day. I was frustrated by this, but I had slept wonderfully. I find that the snack helps me fall asleep, but presents the challenge of usually requiring a little bit of insulin. Just the right amount though – too much and I’ll wake up low in the middle of the night (which is kind of dangerous you know), too little and I’ll wake up parched and drowsy the next morning (high bg).

So last night, I managed to avoid the bedtime snack. I’d brought up my low with a little bit of fruit right after dinner and then coasted. But being so close to 80 mg/dl made it hard to fall asleep and then I dropped over night.

Instead of sleeping this morning I’m doing research. I want to experiment with some of the food recommendations made by Adam Brown in this month’s issue of Diatribe. I think if I can find more foods that fill me up at dinner time without spiking my blood sugar, I’ll have less of a desire to snack later on.

There is always something great in Diatribe! I am amazed at how much I enjoy it and find useful diabetes wisdom every time I drop in. Check out the links above to see for yourself.

Finally, just in case you aren’t already in awe of sleep, I’ll leave you with this Radiolab podcast about its powers.

Wild Adventures with Diabetes

Today diabetes took me on a walk. I’ve been a little resentful of diabetes lately. Sometimes it feels like my blood sugar controls every move I make. It decides what I will eat, if I’ll give myself a shot and how much insulin I will take, if I’ll exercise and for how long and how hard, and sometimes even how I feel about myself.

The last few weeks have been so busy and I’m longing for a little break, just a weekend away from everything, blood sugar included. But you know what, there really is no taking a vacation from diabetes. Checking my blood sugar less and loosening some restrictions in my diet might mean that diabetes takes up less of my time for a day or two, but pretty soon, not feeling as good as I could if I was sticking tighter to my ideal range doesn’t feel very luxurious at all.

So today, around 3 pm, when I was supposed to be working on my manuscript and doing other computer-based tasks, I checked my blood sugar and it was 180 mg/dl. I don’t like sitting when my blood sugar is over 150 – it agitates me to know that I could go on a walk or run to bring it down. It also agitates me when I think about how often blood sugar interrupts my plans. I’ve gotten better at choosing my plans over my perfect blood sugar in the past few years, but it’s a Sunday, and despite my agitation, I decided to let diabetes take the reins.

Immediately, driving off into the countryside around Chapel Hill, I was glad that I did. The sun was bright on budding green fields edged by thick stands of trees waving in the breeze. The trail I found was soft, dirt and gravel, easy on the feet. A muddy Piedmont creek ran alongside it. Towering strong-armed beech trees lined the path. And just when I was almost back to my car, I look up ahead on the trail and saw…

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My poor photography skills do not do her justice. Also, I was not going to get any closer.

a six foot long Black snake. I was mesmerized. My mind left diabetes and everything else behind, and as she slithered away I felt some real freedom from all of it for the first time in awhile.