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.

World Diabetes Day/Dia Mundial de la Diabetes

Solamente unas pocas horas mas en el dia Mundial de la Diabetes, y quisiera compartir este infografia que la organizacion JDRF me ayudo en crear sobre mis ultimos once anos con diabetes. Este es una pintura correcta, mas o menos, de las maneras en que diabetes tipo uno me afecta, pero hay algunas maneras mas en que me ha afectado, y quiero mencionarlas aqui tambien. Just a few more hours left in World Diabetes Day and I wanted to share this infographic that JDRF helped me create about my last 11 years with diabetes. It paints a pretty accurate picture of some of the ways Type 1 diabetes impacts my life, but it leaves out a few things, which I would like to mention as well.

Countless Friendships I have found through T1D/Sinnúmero Las amistades que he encontrado por medio de diabetes tipo 1

3000+ Hugs and words of encouragement I’ve received from friends living with T1D and friends and family who are not/3000+ Abrazos y palabras de aliento de amigos que tienen diabetes tipo uno y los que no la tienen

Endless inspiration, from my friends here and abroad, who are continually learning how to live with Type 1 Diabetes in each new day/Sin fin inspiracion, de mis amigos aqui y en otros paises, quienes estan continuamente aprendiendo como manejar diabetes tipo 1 en cada dia nuevo

The tongue may be an unruly member…

As I nursed my own aching and raw hurt, so many of my friends and colleagues expressed the same sentiment, “I feel like someone has died.” The mood yesterday (at least in my community) was funerary, grief-ridden, and I approached the world in mourning.

Yesterday I did some writing, but thought to myself that I should keep political opinions off of my blog. I realized though, talking to mom last night, who has waited, and hoped, and fought, for years, for even a glimmer of equality between men and women, that this is not, ‘talking politics,’ whatever that means, this is talking about my life.

When Donald Trump was elected, so many of my hopes for the future and my excitement at the progress we had made as a nation did truly die. My trust in humanity has even faltered. And reading the comments of my friends expressing their fears and sorrows on Facebook, reminded me that this is not just a scary time for me as a woman, it’s a scary time for me as a person with Type 1 Diabetes. With the passage of the ACA, I felt recognition, that I was no longer a person who would be stigmatized for having a ‘pre-existing condition.’ As if any of us are a tabula rasa who signs up for healthcare without any history of illness or health-related needs. ‘Pre-existing condition,’ was a label that made me feel dirty, tainted, somehow broken. It reminded me of that feeling I had hours after my diagnosis, hooked up to IVs, thinking to myself that no one would want to be with me now that I had diabetes, now that I was damaged goods.

I, like so many Americans, am damaged goods in Donald Trump’s eyes. As a friend of mine put it, under this administration we women are worthless save for our reproductive parts. (I would add that even those are only viewed as worthwhile if they are put to use). As a person, who is a woman, who has Type 1 diabetes, and who views the word ‘community’ to mean that although we are all autonomous individuals, the pain and discrimination that my friends are feeling because of the ways that this administration labels them as damaged hurt me too, I am wounded but am not giving up. And so instead of keeping politics off of my blog, I insist on having a space to speak for equality. Again and again in my life, I come back to the words that give me hope in light of injustices: “The tongue may be an unruly member, but silence poisons the soul.” Don’t be silent. Don’t be defeated. Be disappointed, but keep going. Strive to be thoughtful and compassionate and caring for each other.

A Note on Perseverance

Something caught my eye last night as I turned into my apartment complex. I was driving home from ‘helping a friend move’, which ended up just being eating popsicles with friends, and it was late when I returned. I’m not sure where the moon is in her cycle right now, so it was dark, and since the fireflies have been dwindling lately, even they were calm.

Then there she was, illuminated in the lamplight, a giant dark flyer against the blanket of beams. Maybe a Cecropia Moth, or an Imperial, I wasn’t close enough to tell.

And she was frantically trying to reach the source, although she seemed capped at her present height.

We’ve all seen beetles and moths swarming the porchlight at night. And there’s been a time when I remembered why they engage in this seemingly futile pursuit. But I don’t right now, and it’s not the point anyway.

She was all alone in the beam, or she at least was the star, because she was all I saw. And it made me think to myself, about the things we set ourselves towards, and fight for, and goals we accept without questioning.

And on the other side of that I thought about her perseverance, her unquestioning dedication to the task at hand. And about how at the same moment that the stresses and to-do lists of my life feel heavy on my shoulders, somewhere, everywhere, a Cecropia Moth is consumed with her all encompassing desire to reach the light. DSCN3288

Look Up

Every now and then I am reminded that I am in awe of the Earth.

This time it happened paddling down the Eno River after the sun had set, it’s rosy imprint slowly fading away into a violet-blue darkness.

The moment that it hit me involved a Great Blue Heron, so aptly named, sailing like a hanglider overhead, silver wings outstretched, croaking its primordial call.

This night, and all nights, this world exists here on the river, while cars whiz by each other and humans do their violent and hurtful human things.

The fugue of frogs began. At first it was the peepers, a high-strung section of music, the violins of the amphibian orchestra. Then the pickerels chimed in, their voices harmonizing into a smooth mezzo-soprano (I just looked up vocal range on wikipedia). The rubber-band frogs, I don’t know their scientific name, soloed their song of: “boing! boing!” And then, a tribe of frogs illuminated the soundscape with a single wave of speech, their voices so artificially high it sounded as though they had sucked the helium from some abandoned birthday party balloons. I tried to figure out what they were saying but was distracted by the fireflies, just a few at first, strobe-lighting the dark outlines of the sycamores and tulip poplars. Every third stroke or so the half-moon found its way through the dense branches and illuminated my boat or my arm, reminding me that I was now part of the scene. The frogs sang and played on to a constant chorus of insect sound.

As my mind drifted into their performance I wondered what it would be like to stay all night and just soak up this other world. Suddenly a new vocalist called out, a Barred Owl (as pointed out by my friend and fellow Frog Hollow Guide Cathy), with her signature, “Hooo cooks for you???” A friend, or suitor quickly responded in a lower barotone, “Hooo cooks for you???”

The stars were out now, so fine in the sky: the Big Dipper scooping up the darkness, and I thought, how did I get this lucky?

Which takes me back to chord that’s been running through so many of my discussions lately about luck and blessings and fate and purpose.

And I still don’t know, how things fell into place. But I feel so lucky to have found Frog Hollow Outdoors so early in my time in the Triangle and through them, a river playground to call home. And that’s just the tip of the heron’s wing. So many things, if I pause to look up, are glittering in my life.
Whenever this happens, which as I said, is every so often, I am reminded of my favorite poet Mary Oliver, who provides me with endless inspiration. Among the frogs and owls and soft clicks of bat wings last night I kept hearing these words from her poem, ‘Mindful.’

“Every day

I see or hear

something

that more or less

kills me

with delight,…”

And she goes on…I encourage you to read this and all of her work if you need to be reminded too of the awe out there, especially if you can’t get straight into the woods.

And I will hope that in the middle of any chaos or sadness or uncertainty, that I can remember the reassuring lullaby of a summer river at night.

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.

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.

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.

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. OruroOvejas My 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”).

Worth the insulin

Here are a few Bolivian specialties that I declare are worth the extra insulin. Salteñas, various baked and fried goods at street markets such as this one that appeared to be purely cookies, and small batch Greek yogurt w blackberry beet sauce at ‘Frozz’ icecream and yogurt shop in Sucre.

The best laid plans

When 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” →

Glucolift, checklists, and a lot of luck

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

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.

diabetesmeds

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.

Heading South for the Winter

I’m so excited that in a couple of weeks I’ll be traveling to Bolivia to explore the Altiplano and do work that is very near and dear to my heart. Once again, I plan on blogging intermittently about my experiences traveling with diabetes. In the past I’ve lived in and traveled around Costa Rica four months and through France, Switzerland, and Austria. With international travel there is always a little bit more to consider. For one, I have to pack all the insulin and medical supplies I’ll need for the whole trip, or at least I have had to in the past, because getting these abroad can be a challenge. Then there is the altered schedule and different food options that traveling presents.

photo (9) — Bedtime reading for the next two weeks (although I should also be studying Quechua, Aymara, and other indigenous languages).

The way I’ve decided to blog this trip is by one picture a day while I’m there. I’ll post again at least once before the trip, and I’ll be reading blogs to find out what others with T1D have done when traveling in South America. This is new terrain for me! Thank you in advance for any comments you have that might be useful tips for a person with T1D managing blood sugars at high altitude. Or if you can recommend a high quality, affordable digital camera!

Oh also, about the title of this post, it’s going to be winter there. I’m anticipating a nice cool down from the glorious, yet humid NC summertime.