Endo Eclipse Day

A note: School has begun. A semblance of 'routine' is beginning to appear. The opportunity to dust off a couple of posts I began over the summer and never published has arrived. So, yes, you'll see a couple of stories here which might make you think you've time travelled. But eventually we'll be all caught up!

We were not in the 'path of totality,' but a partial eclipse is unusual too, so we were excited to experience it.

But there was a glitch. The peak of the eclipse in our area was expected around 2:45 and we had an endo appointment at 3. In a city a 30-45 minute drive from home. That ruled out the local library's eclipse event, and a few other cool viewing options. Instead, equipped with our homemade cereal box eclipse viewer, we arrived at our doctor's office building about 2:15.

Out on a busy city sidewalk, we watched the shadows in our cereal box slowly change. The light grew dimmer and weirder. Some people near us had eclipse glasses, some had viewers clearly made at the last minute out of office supply boxes. Some were taking pictures with their cell phones while debating whether it was safe to do so. There were a few familiar faces from the diabetes center, including our endo who was entering the building as we arrived. People from throughout the neighborhood and from all walks of life had seemingly abandoned their work to converge on the streets. While it certainly wasn't the viewing opportunity we would have chosen, watching it in a large and diverse sea of people was fascinating, fun and memorable.

"Doing some eclipse viewing, were we?" asked the doctor when we settled into his office chairs.

"Yup- why not?" I replied.

"Why not, indeed," he said.

We could have bailed on the eclipse viewing because of diabetes. Just like we could have bailed on countless other opportunities over the past 14 years. But we chose to find a way to make it work.

Why not?

Glucagon Training


A couple of weeks before my daughter went on the five night youth group trip I met with the chaperones to train them in glucagon use, and to talk about diabetes concerns for the trip. These are people I know well, which has a great deal to do with why my daughter went on this trip without a parent in the first place. They were eager to learn how to help my daughter have a successful first trip away, and how to react should an emergency arise.

We gathered at a table.

"Epi pens make me a little nervous," my first chaperone friend said.

"Well, wait until you see this thing," I replied with a wry smile.

He was, indeed, humbled by the sight of the glucagon kit.

"Here's the deal," I said once it was open in front of us on the table, "We've never needed to use this. We've never come close to needing to use this. You guys know her. She's responsible about her diabetes and she's self-aware. She's got the continuous glucose monitor which alarms when her blood sugar goes low. But because diabetes can be unpredictable, there's an infinitesimal chance you'll need this, so it's important to us that you know how to use it. And besides, once you see this, I'm certain you'll listen even more carefully to the rest of the ways I'd like you to look out for her." Cautious smiles had returned.

I walked them through step by step with an expired kit, and then one chaperone physically set up my second expired kit while the other gave verbal directions. They seemed to get the gist, and learned to look for the pictographs inside the packaging for clues. In the end, I reminded them that the first step would be to call 911 and that if they were flummoxed by the kit, the fact that they knew what it was and where it was would be key for the EMS workers.

After striking a healthy fear of glucagon into their hearts, we went over the very simple things a 15 year old kid who's out of her element might need their help with in order to avoid disastrous low blood sugar:

-Someone to hang back with her if she needs to wait out a low.
-Someone to ask her if she's okay if she's spacey or uncharacteristically emotional, which are the primary signs of low blood sugar for her.
-Someone to stand up for her if someone gives her a hard time about stepping aside when she should be doing her volunteer job, or eating when she "shouldn't be," or looking at an electronic device when the kids have been told not to.
-Someone to get up and nudge her if a dexcom alarm is going off in the middle of the night.
-Help getting supplies should she somehow blow through the snacks, juice and glucose tabs we packed.
-Support if (when?) diabetes causes missed opportunities or unpleasant experiences along the way.

In the end they didn't use the glucagon. In the end, it may not have been necessary to show them how to use it at all. But in the end the glucagon training led to a much more important conversation about ways to keep her safe. Which made all of us more comfortable.

The Trip I Never Thought Could Happen


My daughter is currently in a city 4 hours from here without a parent.

This is it: the moment I thought would never come.  No way. No how. She would NEVER grow up. At least not diabetes-wise.

I'm stunned that it's happening and even more stunned that I'm completely okay with it.

I was welcome to go on this trip- a service trip with the church's youth group. But this seemed, for several reasons, like the ideal opportunity for her to spread her wings.

Why now?

-She's as ready as she'll ever be. She proves it every day. She especially proved it on the high school's spring music department trip which I, of my own free will, volunteered to chaperone so that I could be there 'just in case.' There was no 'just in case.' She did it all by herself while I shared a room with a (as it turned out, perfectly nice) stranger and worried endlessly about the whereabouts and safety of the rest of the kids.

-This trip is relatively close, just a four hour drive should I need to get there. And it's in the middle of a major city so there are hospitals, ambulances and pharmacies readily available should she need them.

-It's a small group: 6 kids and 2 adults. One of the kids is one of my daughter's closest friends. These kids genuinely like and care about each other. The chaperone to kid ratio is pretty great too.

-Speaking of chaperones, if I had to pick two people to send my kid away with for the first time, these two adults would be at the top of my list. Their willingness to take this on was, of course, one of the essential criteria. They're also responsible, concerned, and willing to learn everything necessary to support my daughter. And, probably most importantly, my daughter trusts them and likes them and will therefore include them in any issues she's having- diabetes-wise, and otherwise too.

-Lastly, and probably most importantly, my daughter was willing to go without me. That's been the bottom line for every big step towards diabetes independence we've made thus far. This decision was no different.

So far so good, considering the fact that diabetes does not travel well. One HIGH with double up arrows on the Dexcom required an emergency site change. An 82 at bedtime required some thinking about what to eat in order to make it until morning (a cherry Nutrigrain bar with no insulin- and yes, she made to morning). Otherwise she's guessing carbs as well as I could, remembering to carry her sack of dia-stuff, and keeping an eye on the Dexcom. I'm grateful to have the Dexcom share so I can check in when I'm worried, but I'm checking less than I thought I might.

Meanwhile she's having a huge adventure, both with the volunteer projects they're doing and with the sightseeing opportunities they're squeezing in whenever they can.

It's hard to wrap my head around how we got from a teeny, tiny person with diabetes who was totally dependent on me for every aspect of her care to this particular moment. It wasn't one giant step. It was a million teeny, tiny steps and suddenly, stunningly, here I sit over 200 miles away. And, inexplicably, I'm really pretty okay with it.

Look at That!


"The lady with the Omnipod is still at the pool with her kids most days," my daughter reported the other night.

"And there was another woman there. She had a pump clipped to her bikini top but the tubing was connected to her hip.  It would make sense if the site was in her arm maybe. It looked uncomfortable to me.  Or like you could accidentally yank it out with your own arm somehow- but whatever I guess...it's up to her."

It's summer again, which is prime pump-sighting season, especially at the pool and the beach.

Last years' beach vacation tally was 2 dexcoms and an Omnipod.  Our town pool tally was 2 omnipods and a tubed pump a little too far way to identify the brand of.  Walking around various cities and towns added 3 more pumps that I can remember. 

We've never spoken to any of these people about their devices.

But we always speak to each other about them. "That guy has something on his stomach...over there by the purple striped umbrella...is it a Dexcom or an Omnipod?" Or "That lady's making me nervous standing knee deep in the water- over there near the jetty- I think that's a Medtronic pump, right- those aren't waterproof are they? The tide's coming in fast." We discuss where the devices are worn, attempts to disguise them or not, and how far down the beach the people with diabetes walk without bringing a meter or a container of glucose tabs with them.

It's fascinating to watch other people with diabetes in the wild. It's also comforting since every sighting-spurred conversation boils down to this: "Hey- look- there's another person with diabetes just living life," and especially at the beach or the pool, "and having fun."

In Other People's Hands


I met a woman the other day who was an occasional substitute nurse at the middle school.  While this was the first time we'd met, she knew my daughter well.  There are others like her.

I have sent my child to school, on field trips, to birthday parties, to marching band camp and more.  The older she gets, the more people we collect who've helped her with her diabetes care. Some I know well, some I've been introduced to, and some I've never met.

I wonder if the people in whose hands I've left her fully understand how I feel about them.

These people have taken my child's life in their hands. Maybe they don't realize that, or look at it that way. I certainly wasn't going to point it out in quite those terms to the preschool director who agreed to accept her into the program. Those weren't the words I used when I thanked the parents who invited her for her first sleepover. But these, and many more adults, have been aware that having my daughter in their class, in their home, or in their field trip group necessitated an extra level of responsibility and vigilance.

If taking on that level of responsibility wasn't enough, these people have, quite often, gone above and beyond what I would have expected. Parents have contacted the birthday party venue for carbohydrate counts on food. Teachers have requested to be glucagon trained for my child's safety. Chaperones have sat with her while she stopped to check her blood sugar. Guidance counselors have called about 504 accommodations I never would have considered. Nurses have called just to reassure me that everything was okay. I'm incredibly grateful for every one of these thoughtful acts.

Being the parent of a kid with diabetes is a huge job. Being a kid with diabetes is an endless challenge. We're incredibly grateful for the people who step in to ease the burden in whatever ways they can.

Upper Hand


Last week, diabetes had the upper hand. It issued a series of decrees.

They included:

*Alarms will sound nightly from midnight until four a.m.

*You will wake a sleeping teenager for Cookie Monster Juice at least twice per night.

*Delirium will lead you to wonder if the nightly need for multiple juice boxes has something to do with the Cookie Monster themed branding. As in, 'Me Want More JUICEEE.'

*You will wake each morning to say, or to hear your child say, "Uck- juice box breath again. This is so gross."

*You will become so exhausted by overnight low blood sugars that you will increasingly limit dinner and bedtime boluses until the alarms turn from low to high, though still reliably from 12-4.

*You will try multiple tactics to stabilize overnight numbers and each will backfire more mysteriously than the next.

Diabetes, I have news for you. You don't get to win.

We issued only the only decree we need:

*We will not give up.

With perseverance and patience the trend is abating as mysteriously as it appeared. Maybe we finally made the right basal adjustments. Maybe we fixed the bolus dosing for the evening hours.

Or maybe it's all because we switched back to Juicy Juice boxes.

Unsolicited Advice- We Are Not Alone


I thought armchair medical quarterbacking might be a unique diabetes phenomenon. People who live with diabetes often hear these kinds of things:

That new pump with automatic shut-off sounds like something everyone should have- when are you getting one?

I can't believe you let her go to the carnival without an adult- that seems so risky.

My coworker with diabetes completely eliminated carbs and she's doing great! You should try that.

My nephew never had a 504 plan and he graduated high school with straight A's and a 1300 on his SAT's. Why would you have one for your daughter?

I happen to be spending time with a few different people these days who have medical conditions other than diabetes. I'm learning that we diabetes people are not alone. The free dispensing of unsolicited advice crosses many disease platforms. I've heard 'suggestions' like:

I never went to a doctor for my rotator cuff issue- my chiropractor is amazing. Alternative medicine is the only way to go.

My cousin had that kind of cancer and never considered new or experimental treatments. It seems really risky.

Dad wouldn't have put up with the pain long enough to try physical therapy and pain management for his back issue. He went straight for surgery. I can't believe you're going through all of that.

There's a catch-phrase in the diabetes community: Your Diabetes May Vary (YDMV). In many ways it applies to other physical conditions too. There are so many reasons (more than this short list) that different treatments and lifestyles work better for different people with the same diagnosis:

-First of all, the diagnosis might not be quite the same at all...type 1 vs. type 2, different kinds of back injuries, different kinds and stages of cancer.

-A condition can physiologically manifest itself differently in a different body.

-Insurance coverage and ability to pay can influence medical choices.

-Education and prior life experiences influence decisions people make about treatment.

-Quality of life has a different meaning for everyone, leading to different tactics for managing a health condition while living a full life.

I think it's okay, if not downright helpful, to talk to each other about the different ways we manage diseases. We can certainly learn from one another, and it's often useful to hear and to try new ideas. What's not helpful is insert assumptions or judgements into the conversation. It's important to respect and support the decisions people make, even if they're different than yours. What works for one may not work for another.

At least, diabetes friends, we're not alone. It turns out that Your Disease, Discomfort, Distress, or Dietary Restriction May (Also) Vary. And that people have opinions about all of them.