Bienvenidos a la familia

The first thing I noticed after we pulled into town was the smell of smog. In Bolivia, on the weather report it is common to see ‘smoke’ listed as if it were a naturally occurring phenomenon like wind or rain. But smoke has been introduced into the nation, a byproduct of mining and concrete factories and the wood people burn in their homes to combat the dusty, dry, creeping cold of the Altiplano winter, which runs June through August.

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Looking up at the denuded mountains from a Bolivian tin mining village.

After we’d checked into our hotel in the city center, we rode to the clinic in an ambulance that I’m still not sure the status of. It may currently be in operation, or it may just be the finest van in town. Upon entering the building we were greeted by immediate embraces and kisses from all who had come for the focus group. The first to hug me was a woman wearing a traditional pollera skirt and whose thick, jet-black braid ran far down her strong back. She kissed me solidly on either cheek and rubbed my shoulders vigorously, her eyes glistening with emotion.

That woman was the mother of Angela (name changed), a 19 year old girl who has had Type 1 Diabetes (T1D) since she was around 14. The next day we visited the whole family in their pueblito at the base of a giant tin mine where many of the residents, including Angela’s mother, work to collect minerals from inside the mountain or from the river bed that catches the heavy-metal runoff.IMG_2095

Earlier in the day we had boarded a dusty microbus on the side of the road next to women selling fried breads of all varieties and hot drinks in plastic bags with red straws sticking out of the tied ends. Maria bought one of each for the road. I poured hot water into my orange backpacking mug balanced on one knee and made a cup of instant coffee to sustain me through the morning van ride. We had three home visits ahead of us, separated by miles of pockmarked and potholed roads, and coffee was non-negotiable.IMG_2064

Each day from my time in Bolivia could stand alone as a life-changing experience based on the stories I heard and people I connected with, but this day in particular shines bright in my memory. Maybe it was the sun rising over the arid quinoa fields at the base of the Bolivian Andes, or talking with the teenage sisters who live with Type 1 Diabetes in temporary housing with no electricity or running water. But I suspect above all it was the immense kindness and generosity we encountered from the families we visited. Not only did they share their experiences living with Type 1 Diabetes and managing it in a country where finding supplies is hard and affording them is nearly impossible, but they also filled our stomachs with homemade breads, hot drinks, and even fresh sheep milk ice cream, frozen overnight in the rafters (that was breakfast).

All this social eating was a little tricky for a gal living with Type 1 Diabetes herself, but I came to realize just how immensely blessed I am to be able to manage my blood sugar with an insulin pump and to check my blood sugar anytime I want to. I already had some idea of this, which is part of why I wanted to go on the trip in the first place. I connected with the organization ‘Life For A Child’ (LFAC) because they provide test strips and insulin to children living with Type 1 Diabetes in low-resource nations who lack access to adequate medical supplies. I was hoping my practicum could translate to a learning experience for me and an immediate benefit for others living with Type 1 Diabetes who don’t enjoy the luxuries of management that we have here.OruroOvejasMy purpose on the ground in Bolivia became to interview, chat with, observe and learn from as many people living with Type 1 Diabetes or supporting those who do. Over the course of three weeks and five cities I got to do over 40 interviews and focus groups with nearly 100 participants made up of youth with T1D, their families, and the clinical staff and volunteers who support them. Everywhere I turned, a new element of life with diabetes in Bolivia jumped out at me. It became apparent that Bolivian cultural values were critical to consider when thinking about successful health outcomes for youth with T1D, especially the role of the family. One participant who volunteers as a leader for the group in Potosí and who has had T1D for 23 years himself, said that in all the situations he has observed, “La familia ha sido fundamental para poderlo apoyar..cree una necesidad, de, en todo diabético, de que la educación no sea sólo en el paciente diabético, pero sea también en su entorno. Ese apoyo a la familia, o esa educación a la familia, creo que también es muy importante, porque es un daño que afecta la familia” (“The family has been instrumental in that it can support…it creates a need, that, for all diabetics, the education not reach just the diabetic patient, but also their environment. This support for the family, or education for the family, I think it’s also really important, because it [diabetes} is an injury that affects the whole family”).

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Sisters walking home
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Glucolift, checklists, and a lot of luck

My Glucolift is packed, I’m ready to go…

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I love Glucolift. It’s the only glucose tab that I don’t dread eating. I buy it on Amazon. Vegan, gluten free, no artificial flavors or colors.

I’ve been marking through checklist after checklist for the last two weeks. The nice man who works at CVS doesn’t need to ask for my card number anymore, he just remembers it.

Today I went to the pharmacy twice, yesterday once, and the day before, yep, at least once.

The last time I traveled out of the country was in 2011. At that time I was preparing for a three month long trip. I quit my job, packed up a huge suitcase and my backpacking pack and filled a lunch box sized cooler full of insulin. This time it’s just a three week trip, and yet I feel like my wheels are spinning as I try to get organized with all these medical supplies.

It’s my first trip out of the country since getting the Omnipod insulin pump. I wore it when I flew to San Antonio for a business trip and to San Francisco to visit two great friends, but never on an overseas adventure and never to a place where I’m not sure what obtaining supplies will be like.

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These are some of the diabetes-related supplies I have to carry, and yes, before you say anything, chocolate is a necessity. In the past, I’ve felt so burdened by all of this ‘stuff,’ but in this moment, embarking on this project, I feel so exceptionally lucky.

I am so lucky to be able to afford and obtain these supplies. I am so lucky that this technology is available in the U.S. and that my insurance covers at least a portion of it. And I’m lucky to have so many amazing friends and family supporting me.

When I was diagnosed with T1D 10.5 years ago, a doctor looked at me in my hospital bed and said, “You know, it could always be worse.” At the time, that was not the wisdom I was hoping to hear (actually I was hoping for, “most cases of diabetes clear up in two to three weeks…”). Yet, nearly a decade later I realize how right those words were, although maybe not in the way that doctor intended. I am so very lucky to have been born in this time, with these resources, and this support network, and have such a good starting point for managing diabetes. Not everyone is.

One more thing this time: if you enjoy my blog please go ahead and become an official follower (see the little button bottom right of the screen). It’d be a big help to me and I’d really appreciate it! You can always unfollow or change your email settings if you feel like you’re getting too many notifications from me, but I rarely write more than once a week.

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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Getting Found in Lost Cove

Here’s a link to a recent article from Blue Ridge Outdoors online that I wrote after a backpacking trip with a bunch of friends in the Wilson’s Creek area of NC. It reminded me how much my friends care about my health and well-being and the way that Type 1 makes me think on my feet!

http://www.blueridgeoutdoors.com/go-outside/getting-found-in-lost-cove/

This is my friend Laura and I, super excited about life and the trail!
This is my friend Laura and I, super excited about life and the trail!