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.

Walking through Innsbruck

To awaken quite alone in a strange town is one of the pleasantest sensations in the world. – Freya Stark

I stayed in a small Air BnB across an azure blue river that ran straight through the middle of Innsbruck. I walked there for the first time from the train station – my gracious host offered to pick me up, but I screwed up military time in a text message and told him I was coming 2 hours after my actual arrival. He gave me directions and I looked them up using the train station’s wifi (which was the only way I could use my phone) and headed on my way.

Google Maps estimated a 25 minute walk. I arrived an hour and a half later. Although I was toting my backpack stuffed to the brim, a rolling suitcase, and finally my purse, flung around my shoulders, I wasn’t slowed down too much by my baggage. I just simply couldn’t stop spinning around in circles to take in the shining spirit of the city. Here’s my walk in pictures:

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I strolled across the street to a pedestrian only plaza where shoppers and diners milled and mingled.

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…before finding this strange alley of murals. That closest one is a kiwi on a chicken bone. Perhaps a show of peace among vegans and carnivores (although I’m doubtful).

img_0402.jpg I didn’t stay at this hotel; I just took this picture to prove I was really in Innsbruck.

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I walked across the bridge towards my new abode in the wake of mountains all around.

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Et voila, practically home. The huge wooden door was tucked behind a swath of climbing red ivy between two classically Austrian buildings.

Everyone was walking or biking up and down the steep hills. In many places there were wide pedestrian sidewalks next to double-lane bike paths, bordered by a line of trees and flowers, before finally meeting the edge of a quietly buzzing road on which the motorists dutifully slowed on yellow and stopped on red.

It took me awhile (I mean like two weeks after I returned) to realize why I felt (at least in part) such a sense of peace in Innsbruck. It could have been the mountains all around or the fact that I was at a conference where everyone was thinking and talking obsessively about diabetes (just like me!), but another huge part of it was the pervasive walkability of the city. Pervasive because it was unavoidable – you couldn’t get where you needed to go without walking. It didn’t just feel safe to walk alongside the cars, but in many places there were no cars at all. The restaurant I ate at twice – Osterreich – which I actually thought had something to do with an Ostrich, before I realized how painfully complacent my brain was acting – was only accessible via foot. And, what’s more, the whole time you sat, enjoying grilled chicken or roasted sausages, fluffy piles of freshly grated horseradish, or mounds of sauerkraut, you could watch, not cars whizzing by, but a live feed of humans doing human things.

IMG_0475.jpgFor example, this brass band bedecked in green, who lined up to play in the heart of the city.

Walking is one of my favorite things. But also, walking is one of my favorite things about traveling. I’m grateful to have a car, but I don’t like cars. I like moving more slowly through life and having the chance, if I so choose, to reach out and touch it. And diabetes loves a walk. People talk about the benefits of exercise for diabetes management, as if exercise was some strange set of unnatural activities that the body must be guided through. I’ll admit, I go for a run every now and then, and it does bring my blood sugar down, but for me, there’s nothing like walking to bring my body into balance. Adam Brown, a writer often featured on diaTribe, explains the blood sugar benefits of walking beautifully here. When my bg is high, instead of dropping rapidly like I do while running, I glide towards a more reasonably blood sugar. Instead of tiring me out, a long walk makes me ready for another walk, or a night of dancing (lucky for me too, because of all the specialists, pediatric endocrinologists are the best dancers).

My last day in Innsbruck, after cramming my head full of presentations and standing up to do a couple myself, I took myself on a mind-clearing walk. My host had told me there was a tram to the top of the mountain, so I headed up the hill towards the peak. Shockingly, I did eventually find the tram, but then decided that my budget preferred continuing to walk. Oh also, that’s another thing, walking is cheap!

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Not to mention beautiful.

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Gazing out over Innsbruck, I felt overwhelmingly grateful for my experience and for all the people who helped me get there. Although I enjoy the feeling of solo exploration, traveling, more than anything else I think, makes our interconnectedness blazingly obvious. I was guided by countless mentors and passed from hand to hand of old and new friends on this journey. Thanks to each and every one.

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.

 

Saying Goodbye to Mary Tyler Moore: a Member of Our T1D Community

Yesterday the Type 1 Diabetes community said goodbye to Mary Tyler Moore. The New York Times talks about Moore as a “feminist icon” in her role on the Mary Tyler Moore show and NPR discusses her comedy and wit. America knew Mary Tyler Moore for all of these things, along with her beauty and charm, but many may not know that she did it all while managing Type 1 Diabetes. In fact, she was diagnosed in her early 30’s, shortly before the Mary Tyler Moore Show first aired.  In her book, Growing Up Again, she details her journey with Type 1 Diabetes from diagnosis, to becoming a champion and funder for diabetes research. I found the book approachable and inspiring, and recommend it especially for those diagnosed in late teens or early adulthood. I want to offer a quote from Chapter 3, because it resonates with the pain I felt when I was diagnosed so clearly:

“Spontaneity is one of the first of life’s pleasures that’s lost when diabetes appears. Everything must be thought out carefully before doing almost anything. No one likes to give up any sort of freedom, but when dealing with diabetes, there are some things one must accept. This and other matters fall under the heading of control. If you don’t control diabetes, it will control you.”

In this quote I think we see the Mary Tyler Moore spirit that viewers loved her for; the feisty, playful nature, coupled with the acceptance of a life-changing condition. And yet, despite all that careful thinking, Moore did so much in her lifetime, including advocating for others living with T1D, as covered by USA Today.

I’m moved by her story because she’s celebrated as a woman who accomplished so much, and yet all the while she had the full-time job of diabetes to attend to behind the scenes. I’m so grateful that Mary Tyler Moore decided to share this part of herself, her diabetes story, with the world, and give her inspiration to our T1D community.

References:

Moore, T. M. (2009). Growing Up Again: Life, Loves, and Oh Yeah, Diabetes. New York, NY: St. Martin’s Press.

Painter, K. (2017, January 25). Mary Tyler Moore was a role model for others with type 1 diabetes. USA Today, News. Retrieved from http://www.usatoday.com/story/news/2017/01/25/mary-tyler-moore-type-1-diabetes/97058152/

Baker, J. (2017, January 25). She turned the world on with her smile: Mary Tyler Moore dies at 80. NPR: All Things Considered. Retrieved from  http://www.npr.org/sections/thetwo-way/2017/01/25/461947952/she-turned-the-world-on-with-her-smile-mary-tyler-moore-dies-at-80

Heffernan, V. (2017, January 25). Mary Tyler Moore, who incarnated the modern woman on TV, dies at 80. The New York Times, Television. Retrieved from https://www.nytimes.com/2017/01/25/arts/television/mary-tyler-moore-dead.html?_r=1

Constant Resolution

As I alluded to in a recent entry, open conversation, not being silent, is still key right now. In the spirit of embodying my 2017 theme, I’m going to string together a few pearls of wisdom I’ve picked up from the various people who inspire me every day. Then I’ll talk briefly about diabetes, too.

My head is brimming lately with all these phrases and metaphors that my friends have shared with me as the wisdom that guides them around their busy lives. One of my friends, as we were driving down a street full of piles of leaves and Christmas decorations that had been taken halfway down, shared a quote by Martin Niemoller, a Holocaust protester and survivor, which I had heard many years ago but had forgotten until then. It’s important, and I don’t want to forget it again:

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.

So much of what I have to be grateful for in my life comes from the friendships, like that I have with this friend, with wise women and men around the world who are searching for purpose and striving to be all they can be every day. Another friend of mine, who I’ve recently reconnected with, reminded me that we are never through becoming ourselves. And yet another, in a parallel conversation earlier this month, shared a favorite guiding quote of hers, “the most important thing in your life is…your life.”

Translating all that to diabetes management, as is the constant struggle, leaves me with some interesting reflections as well. In 2016 I left the pump and moved back to insulin injections. This was a really positive change for me. Interestingly though, so was the pump when I started with it. Which reminds me that diabetes management, like life, is not a static endeavor. Our needs change and being able and willing to adapt is a sign of healthy coping, not an indicator that we are failing or were wrong before.

Now I’m enjoying more fruit and less wheat, more cooked vegetables and spices and hopefully, just a little less hot sauce and salty condiments. I’m borrowing some wisdom from both my Southern mother and Chinese medicine, that cooking foods, especially in winter, makes the nutrients more accessible to the body and of course easier to digest.

And finally, my 2017 health resolution, both because it directly improves my blood sugar and because it makes me friendlier, is to prioritize sleep. I rang in the New Year with this theme last night. But I’m also hoping that regular sleep will also help me effectively abandon it when I have the chance to work on my last, little, other resolution, which is always my resolution, to dance more.

So in sum, may we never be done listening to each other, learning about life and ourselves, and resolving.

 

The best laid plans

imageWhen one is traveling, going with the flow is essential, de acuerdo? I think the same with diabetes. I actually missed my flight to Bolivia. But the plane came back for me, as it turns out. We’ve visited so many amazing families who have fed us some amazing Bolivian delicacies. It’s been necessary for me to take more insulin than usual in order to aprovechar de la experiencia and also deal with the stress of last minute changes and running to throw our luggage onto buses. Also, blogging, probably not going to happen much. But I did spend a 6 hr bus ride trying to photograph an alpaca or maybe a llama, for my friend Ms. Boffa, and I finally succeeded. Continue reading “The best laid plans”

Free Range Humans

Against a deep black sky, a perfectly halved moon illuminated our small campsite set within the welcoming confines of a scrubby circle of tall grasses and short trees. Nearby, a tributary flowing down into Flat Laurel Creek gurgled the sound of its boundary.

We arrived at our home for the evening before nightfall, when the sun was just releasing its hold on the day. We’d hiked since noon, eating a picnic lunch on the crest of Tennant Mountain, right below the plaque that marks its peak. We hiked over wet and rocky trails where blobs of clear eggs, punctuated by the promise of new frog life, bobbed in pools and puddles. The only other real wildlife we saw was a pack of undergrad males on their spring break, all having reunited in Pisgah Forest from their various schools.

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I hadn’t been back in the mountains, like really back in them, since I moved away from AVL in August. I was afraid to return sooner – afraid that if I didn’t separate myself enough and bond with the land and people in the Piedmont that I’d just live in the mountains in my mind instead of in the world all around me. But coming back home on this trip to Black Balsam and Sam’s Knob felt solid. My friend from school, my backpacking buddy two trips in a row now, couldn’t stop commenting on just how perfect everything was. That’s a heavy word and yet she was so right. You know those moments when you have an awareness of how totally happy and satisfied you are at the time? The whole trip was like that for both of us (I’m willing to say from our continual debriefing). And I was aware, maybe because we’d spent the previous week running from classroom to computer to meetings to google hangouts, that it was so perfect because we had so much less. So much less stimulation, so many fewer options, so many less modes of communication.

And yet I felt more connected.

Laying under the stars, dreaming of life thousands of years ago, my mind was at peace.

It was a good break for my mind all the way around. Only reflecting back now, since this is a blog about life with diabetes, do I realize that thoughts about diabetes don’t dominate any aspect of the trip (except one, and I’ll get there). Of course I thought about diabetes the whole time, as a backdrop to everything else, but I didn’t notice so much that I was thinking about it. It didn’t frustrate me to be thinking about it and I didn’t worry about it. When I reached a level of competency with diabetes I assumed that I had grown with it as far as I would. I had learned that diabetes was in fact manageable but thought that it would never get easier. And that is true; the actual management and burden of diabetes doesn’t necessarily get easier in and of itself, although it does change. But it’s sort of like (I would imagine) a marathon runner training for something and then experiencing a level of ease with certain aspects of it. Yes the last couple miles, or shaving speed, or steep courses, are still a challenge, but there is a certain level of ease with running a distance that to me, a non-runner, seems insurmountable.

Ok, so I mentioned that one aspect of the trip when diabetes did announce itself loudly: the great Bear vs. Nightime-Low debate. If you’re a person with T1d you understand that you can’t go to sleep without knowing where the food is in the house. For me, I keep a honey bear right by my bed. But when I’m backpacking, my goal is to keep bears far, far away from my bed. So what to do?

And I really don’t know. What we did was secure and hang our food appropriately, far, far away from our campsite. One of the recent times that I went backpacking I had to tear the bear bag down from a tree in the middle of the night to get to more carbohydrates, and I just wasn’t prepared to do that again, so I decided to keep two honey zinger packets in the tent.

Sure enough I woke up in the middle of the night with a serious low. I’m not proud of these backpacking lows and I’m still trying to work them out. Walking all day with an extra 30-50 lbs. on my back exhausts my muscles in an unusual way. Even if I got to bed at 175 mg/dl, with very little insulin on board, I could wake up in the 30’s, like I did on this trip. Luckily I had the zingers. This time I stored them in my empty nalgene, which I thought, with it’s good seal, thick plastic, and odor of aquamura, would deter a bear as well as anything else I had. A pelican case could be another option.

So here’s the part where I need some diabexpertise: what do people with T1d who backpack do when they’re camping, say out West, where the stakes involve grizzlies? What do you do here in the East? I really appreciate your comments and dialogue!

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A Question for Omnipod Users

This is a picture of Olympic cross-country skier Kris Freeman that I found on pinterest…so apparently having muscles and wearing the Omnipod is not a problem. 

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It’s a challenge in creativity to figure out how to wear a pump and do physical activities like yoga, dancing and other atypical movements. A friend of mine is hesitant to try to the Omnipod because she does aerial arts and is afraid it might come off. I have been having a lot of trouble finding sites that I can wear the pod lately because my favorite sites seem to be building up some scar tissue or something that is interfering with my absorption.

This is a question for anyone reading who wears an Omnipod:

What are your favorite sites and why?

Submit a comment below and thanks for sharing your ideas!

Yoga with a Purpose: Life for a Child

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Think back to ten years ago today. It’s hard to do. If you managed it, can you imagine your then self ever guessing what you’d be doing (and why) ten years later? Yesterday I could remember back to a Halloween a decade ago when I was too sick to carve pumpkins with the new friends I’d met just a few months before. It was my first semester of college. I had undiagnosed Type 1 diabetes and would have ever imagined why I felt so very miserable (and worse everyday).

I also would have never guessed that ten years later I would be lucky enough to be teaching a yoga class as a mini-fundraiser for “Life for a Child,” an amazing program of the International Diabetes Federation. “Life for a Child” provides insulin, test strips and trains teaching teams in clinics around the world to support children living with Type 1 diabetes who might otherwise die from lack of access to diabetes supplies and care.

The day meant so much to me, not just because “Life for a Child” is an amazing organization, but because of how much my own journey with diabetes has taught me and the twists and turns it’s taken me on. Because of diabetes I began to rely more heavily on yoga as a coping strategy and eventually got my yoga teacher certification. Because of diabetes I find myself pursuing a master’s in public health and meeting people that are all so dedicated to their causes and their passions and it’s so inspiring. And those are the people who were sitting on their mats on a crisp Halloween afternoon to do inner and outer work together. I am so grateful to them. The hour long class raised $112.00 to be donated to Life for a Child.

A beautiful group of dedicated yogis.
A beautiful group of dedicated yogis.

I am also so grateful to Loving Kindness Yoga School in Carrboro for allowing us to use the space.

Finally I’m grateful that “Life for a Child” is working tirelessly to literally make it possible for children to live, to grow and flourish with this condition instead of living in fear. Their work is essential. http://www.idf.org/lifeforachild 

When Insurance and Supply Companies Get You Down

Strap on your skates and get ready for a ride round and round the insurance-supply company roller rink! It’s a place full of big ups and downs, of enthralling personal emergencies, of fantastic defeats that you have to pick yourself up from so you can try, try again, because next month, you’ll still have a chronic condition and you’ll still need those supplies, gosh darnit!

A couple weeks back I’d just walked in the door of my little sagging bungalow and was headed for the fridge to make myself a cheese plate and celebrate Friday afternoon on the porch. As I was taking the insulin for my appetizer, my pod suddenly alarmed, a long high pitched drone, that was clearly not going away. The pdm said “remove pod and call customer service.” I was very distressed to be interrupted on the way to cheese, but I called the number, because I had to. You can’t choose to do diabetes later. After a long conversation and being instructed to stick my pdm with a paper clip numerous times, it was determined that my pdm, still under warranty, would need to be replaced. The company rep was very helpful and friendly and the whole thing went pretty smoothly, considering the way it interrupted my vision of an afternoon. She asked me that thing that supply company and pump reps ask when you have diabetes and some part of their process or technology screws up, “Do you have a backup method of insulin delivery?” One time a customer service person went so far as to say to me, “I recommend that you use a backup method of insulin delivery.” Well I guess she did! Luckily I always have novolog and lantus in the fridge and plenty of syringes. The fact that anyone would present it like there was another answer besides “Of course I do!” that would work is laughable to me. But I started thinking, what if I was in the woods? On a plane? What if I had packed enough novolog and pods for any pod malfunction, but hadn’t considered that at a normal moment the whole system could crash?

It made me think too about kids with type 1 who wear systems like this, or even those who just use injections, who do not have a lot (and I mean a LOT) of parent support. The following week my saga continued. I called my pod supply company no less than 6 times, because over the course of the past three weeks I’d been waiting on pods that never arrived, and each time I spoke with someone they assured me something like, “We have to wait on approval from your doctor, they usually get back to us in two to three days.” I had to give them my endo’s number at that point, then call my doctor and confirm they received the request, then call the supply company back to notify them that the approval was in, and they still did not automatically request reauthorization from my insurance co. Every year, EVERY YEAR, my doctor and insurance company have to re-authorize that I do in fact still have Type 1 diabetes. Why would common sense and accepted medical knowledge not trump procedure here? If I am requesting pods to deliver insulin, obviously I need it. And type 1 diabetes, unless you’re in a swanky new clinical trial that I don’t know about, does not go away. We know that, or at least it’s very commonly accepted in the medical world, so can we please give those of us who live with these conditions a break and let them just manage their blood sugars and lives, instead of spend the majority of their self-care time on the phone trying to determine if their pods are on the way or if the approval has even yet been requested.

And that is all I better say about that, except that I am lucky enough to be able to take time off work to make these calls, have a cell phone with unlimited minutes, and have the awareness that you must be a strong self-advocate every step of the way. I can’t imagine what a parent would do if their child was just diagnosed with type 1 and they did not have this flexibility in their work schedule, they were trying to learn about the condition itself and navigate the slippery world of insurance policies and secure their child’s supplies each month. I don’t know how a parent of or someone with type 1 would do it if they only had a limited number of minutes on their phone or if they didn’t know that you have to have backup for your backup. Or if they didn’t have the support of family and friends with type 1 and without like I have been lucky enough to find.