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Posts from the ‘Traveling’ Category

Best Intentions Need to Stick.

Yesterday, my bag was packed with all kinds of good intentions.  My CGM sensor was only three day old, on a bright and shiny Toughpad to prevent adhesive rash!  The Dexcom receiver was fully charged!  My CGM in the Cloud rig was all charged up and ready to send my data into the cloud so that I would have a safety net while traveling to Washington, DC for the night.  Extra test strips and a fully charged Verio Sync meter?  I’M ON IT.  My wallet even had a few slips of Opsite Flexifix tape cut into band-aid sized strips and wedged into the change purse, ready to help hold down a wilting sensor.

Much best!  So intentioned!

… which did me zero good when I arrived in DC and my receiver threw a SENSOR FAILED error message after I went to the gym, forcing me to reboot before dinner.  Which meant I went to dinner without a CGM graph, which made me feel like I was sort of flying blind, but then I realized I left my glucose meter in my hotel room so I was actually flying blind without any way to check my blood sugar or calibrate my CGM during the meal.

… and then, sometime during the night, the sensor came loose and fell off my thigh.

All these good intentions? They need to STICK.

Not Guten for My Gut.

Skipping gluten was once classified as a preference, but the last few weeks have shown me – beyond a shadow of a doubt – that gluten is not “guten” for my gut.  It feels good, figuring out what was causing so much chaos, and I feel more human, and much healthier.

So all that “oooh, so healthy!!” stuff aside, going gluten-free while traveling is a pain in the ass.

Choosing gluten-free options isn’t unfamiliar territory for me, as we did skipped gluten entirely for Birdy for the first 15 months of her life.  I’m accustomed to carefully reading food labels while shopping, and I’m no stranger to reshaping recipes to fit nutritional needs.  But on the road, it’s hard to tell what foods contain what.

Last week, my family and I were in Vienna, Austria and it was my first experience with “needing” to be gluten-free and being away from home at the same time.  At home, I can read labels.  In Vienna, I couldn’t even read the menu unless it had English subtitles.  The language barrier, plus the dessert constants, made this trip a challenge.

“Let’s stop at that cafe and get strudel!”

“How about some chocolate cake?”

“The schnitzel looks delicious!!”

Everything in Vienna looked delicious, and covered in a layer of gluten.

Being gluten-free is a double-edged sword, but one “for good,” as my daughter would say, because rethinking carb consumption is (sigh) good for my blood sugars.  Avoiding the cream-filled desserts and opting for coffee instead gave me some really steady post-prandial blood sugars.  Not piling on the carbs made for awesome Dexcom graphs, but it was frustrating to have yet another food rule in place.

“I’m pissed off because it’s not a matter of choice.  I like choosing healthier foods, but I really don’t like being forced to because of all this gluten crap,” I said to Chris over yet another boiled-chicken-over-greens lunch.

“I know,” he said, diving compassionately headfirst into a plate of schnitzel.

And sometimes things just got all screwy.  Like on the plane ride home to Boston, where I avoided the roll of bread and opted for the chicken-and-rice meal choice, only to find out from the flight attendant that the sauce on the chicken contained flour (the presence of which was confirmed by my belly about 45 minutes later).  Or when I ate a bag of plane pretzels, forgetting that I needed to care about gluten.  My brain isn’t rewired yet and I need to constantly remind myself (see also:  grabbing a bite of Birdy’s breakfast cereal, only to remember that it contains gluten, and then spitting it into the garbage).

Because it’s not all in my head.  Removing the fog and bloating from my body’s repertoire is such a relief, and I have no desire to go back to the way I’ve been feeling over the last year.  The few times I made the mistake of eating something with gluten in it, I regretted it.  The return of bloating, headaches, abdominal discomfort, and exhaustion were a reminder that my body does not respond well to gluten.  Even if the tests for celiac and gluten sensitivity came back negative, there are clear and present markers that I feel better going gluten-free.

This is an adjustment, but in time, I’ll have a plan.  I’ll have this figured out.  My health is worth the investment.  Besides, Riesling is gluten-free, so I’ll be just fine.

Not A Single Decent Number.

“Huh.  223 mg/dL.  Still.”

This was the mumbled mantra of our vacation to Maine.

Aside from the long drive to Bar Harbor (six hours, plus coffee stops and bathroom stops and “Hey, look at that lobster!” stops), the time we spend in Maine is usually very active.  As a family, we did the hike around Jordan Pond (about 3.5 miles), the hike up South Bubble Mountain (with a stop at Bubble Rock), and spent hours walking through downtown Bar Harbor.  The lure of blueberry ice cream was enticing, but I tried to avoid the sweets and instead downed buckets of iced coffee instead.

And yet my blood sugars were complete shit while we were traveling.

I wanted to blame my infusion set, but I changed it once while we were in Maine and my blood sugar numbers remained crap.  I wanted to blame the bottle of insulin but it was the same bottle that worked just fine at home (and it wasn’t like we microwaved it or let it bake in the car).  I wanted to blame my own actions but I was exercising, checking my blood sugar, pre-bolusing for meals, correcting highs, and sticking with reasonable carb intake.

So I blamed diabetes.

The graphs over the four days we were in Maine were gross.  When I wasn’t high (which was the majority of the time), I was erring on the side of high, teasing the edges of 160 and 180 mg/dL all day long.  Why?  No clue.  Hesitant to up my basal rate in the face of constant walking, I just watched the graph ride the mustard for a few days.  Not convenient, because blood sugars running higher means more water, more “Hey, it feels like someone put cement in my sneakers,” more teeth sweaters, more bathroom breaks.

“Mom, do you have to go potty?”

(Fun when the four year old is asking me, instead of the other way around.)

Sometimes the numbers don’t make sense, and this time, I choose to roll with it for a few days.  There are probably six dozen different things I “could have done” to take a bite out of the high blood sugar trend, but I didn’t want to the micromanagement of diabetes to eat up my brain on vacation.  Instead, I did what I was willing to do and thankfully, now that we’re back at home, my Dexcom graphed has settled back into a more forgiving pattern of Pac-Man dots.

I prefer mountains in the landscape, not in my Dexcom graph.

 

 

Mainly Maine.

(There were about a dozen different places called “Mainly Maine” that we saw en route to Mount Desert Island.  Also, every time I saw a sticker boasting “MDI” I thought about multiple daily injections.  Diabetes for the acronym invasion win.)

A few days in Maine helped sweep away some mental cobwebs.

Blood sugars were pretty much crap the whole time (source of glucose chaos unknown; currently blaming pancreas) but our trip was still main(e)ly awesome.

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

CGM in the Cloud: Personal Preferences.

“Why would you want your continuous glucose monitor information in the cloud?”

Fair question, especially coming from folks in the CGM in the Cloud Facebook group, which is heavily dominated by parents of children with diabetes.

I didn’t want to answer, at first, because I didn’t want to say the wrong thing.  When I meet with parents of kids with diabetes, the instinct to protect them is undeniable.  I want to tell them stories about people who are thriving with type 1 diabetes – “Hey, have you heard about the guy who is running across Canada?  Have you heard about the woman who gave birth to twin boys?  Have you heard about the couple who met and fell in love via the diabetes community?” – because that is the perception of diabetes that feels best to share.  It feels good to share successes, triumphs, proud moments.  You can thump your fist against your chest in pride; we are not held back by diabetes.

This is what I want to tell the parents of kids with diabetes.  Their kids will be okay.  Because that’s true – their kids will be okay.  But not without compromise, and that’s hard to articulate because it seems to fly in the face of “your kids will be okay.”  I don’t like reminding people that their kids with diabetes will become adults with diabetes because this disease is forever.  It’s uncomfortable to admit that diabetes is hard.  It’s hard to find words to illustrate the concept of, “I’m fine … sort of.”

“Why would you want your continuous glucose monitor information in the cloud?”

I’ve had some low blood sugars that have rocked me so hard I couldn’t recover, even after I had technically recovered.  Whether you want to admit it or not, diabetes requires extra planning.  Even the best and tightest and most well-controlled diabetes still comes with the threat of lows or highs.  This is why glove compartments end up crammed with jars of glucose tabs, and why back-up insulin pens litter the bottom of purses.  I was always taught to hope for the best – you can do anything with diabetes! – but to have a plan for the worst, should it happen.  Never ride a subway without snacks.  Never put diabetes supplies in checked luggage.  Always check blood sugar before driving.

“Call me when you wake up so I know you’re alive,” is a phrase casually uttered by my mother when my husband is traveling, but the honesty to it stops me cold.  Does my mom worry that something will happen to me at night?

Before Birdy was born, I had a healthy fear of lows, but after she arrived, that fear became something different entirely.  Now, a debilitating low blood sugar doesn’t just touch me, but it could hurt her, too.  When she was a few months old, my husband went away on a weekend trip and it struck me for the first time that if I didn’t wake up, no one would be there to take care of my daughter.  I pictured her in her crib, crying, alone, and without care.  The idea of her going without breakfast hurt me more than picturing my own unresponsive body.

Sounds dramatic?  It’s dramatic as fuck, because diabetes is quiet, until it’s not.

“Why would you want your continuous glucose monitor information in the cloud?”

Why?  Because having someone else able to monitor my blood sugars makes me feel safer.  I can’t make insulin anymore, but I can create peace of mind for myself, and for my family.

So I’m not waiting.  I’m not waiting for bad things to happen.  I’m taking a preemptive bite out of fear by putting another safety net into place.  When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it.  When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep.  Same for when my husband is traveling and I am alone with our daughter.  As much as I know the CGM companies are working hard to bring this technology to patients, waiting removes the safety net that would help me sleep better at night.

I am not waiting.

 

 

Friends for Life: Madcap Recap.

A bulleted list because that’s what bloggers do.

  • My personal schedule had me running around like a chicken with its head (and pancreas?) cut off, and while I felt really lucky to be so busy, I didn’t have enough quality time with people I love.  It’s a nice problem to have, but it was frustrating because now that I’m home, I wish there had been long coffee chats with so many different people.
  • Coffee tastes best out of my new favorite mug –>
  • One of my favorite moments was during the Parenting with Type 1 Diabetes session, when Marissa Town and Melissa Lee started singing the Dexcom “ATTENTIVE” low alarm song, complete with facial grimaces and in perfect harmony.
  • It’s weird how therapeutic it can be to cry in a room full of “strangers.”
  • Even odder still is putting the word “strangers” into quotation marks because anyone living with diabetes has intimate knowledge of moments in my life that even my closest family members can’t quite wrap their head around.
  • It was so nice to meet the team from Kedz Covers, and yet so odd to meet them in Florida, seeing as how they live here in Rhode Island.  Only in the diabetes community do you meet your actual neighbors at a conference 1300 miles from home.
  • (And yes, that’s the “Don’t Mess with Rhode Island, Either” t-shirt, but I negated its awesome message by wearing my bag cross-body style, covering the little Rhody and making it look like I’m on the welcoming committee for Texas.  Whoops.)
  • The “Reducing Social Stigma from Diabetes: A Patient Perspective” session with Richard Wood, Kelly Close, and Adam Brown was one that I wish I had been able to attend, because the stigma related to (and nestled around) diabetes of all kinds is a topic that is very top-of-mind for me.  I’m looking forward to seeing and hearing more about this survey and have been stalking the #dstigma hashtag for feedback.
  • Watching Melissa pass the diaversary torch (so to speak) to Briley in the bar at midnight was a moment that made me laugh, but also gave me goosebumps because marking a diaversary can be intense, but doing it a room full of people who love you is fucking empowering.
  • It was an absolute honor (and wicked fun!) to partner with Dexcom last week, sharing stories and giving away copies of Balancing Diabetes. A huge thank you to Dexcom for their support, and also to the diabetes community for stopping by to say hello at the booth.
  • And thanks to Scott for lending me a pen to use at the book signings, which just so happened to be a pen from George’s office, making me feel like a little bit of George was at Friends for Life, too.  Full circle, there.
  • I loved being part of a session for parents of children with diabetes aiming to answer the questions they might not be asking their own kids, and it was an honor to partner with Adam Brown (of Close Concerns) for this session.  The discussions were intense, but productive, and for anyone in attendance who didn’t end up watching The LEGO Movie that night, here’s a link to what the hell I was talking about.
  • I learned that Scott, aka “Pockets,” keeps an army of diabetes (and non-diabetes related) supplies in his pocket.  The man is half kangaroo.
  • (Happy belated birthday, Pettus!)
  • After Friends for Life was over, Chris and Birdzone flew down to Florida to meet me and we spent a few days at Disney.  Getting ready to head out to the park the next morning, Chris asked why I still had my conference bracelet on.  “I like it,” was my response, because it’s hard to articulate what the green bracelet really means to me, or how the orange bracelets keep me going.
  • I still have my green bracelet on.  We walked through the Magic Kingdom and I found myself glancing at wrists around the park to see if anyone from the conference was there.  I didn’t see any green bracelets.  But I kept mine on in case someone was looking, too.
  • I still have it on now, only I don’t think the cats give a shit.
  • (Total sidebar:  It was Loopy‘s birthday two days ago, and Birdy and I will be making her a “cake,” which equals out to Birdy wanting to eat cake and this is her excuse.)
  • Attending Friends for Life is a place where I can wear my emotions on my sleeve and my pump on my hip.  It’s somewhere I can feel safe admitting the things that weigh heavily on my mind but also celebrate something as simple as a 100 mg/dL on my glucose meter.  And nothing reminded me of this more than when I was walking towards my next session and I saw Briley outside of it, tears streaming down her face.  “I just had my eyes checked.  And they’re totally fine!!  After twenty-five years, they are still fine.”  I couldn’t hug her fast enough, or hard enough, because that’s what you do.  You celebrate the things others would never think to celebrate, and you appreciate the people who understand.

 

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