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“How do you explain diabetes to her?”

“How do you explain diabetes to her?”

How do you explain diabetes to your kid?  I wish there was a strategy, a predictable path that conversations about health and wellness could take, like when my daughter brings out The Game of Life and I want to replace all the normal life stuff with the diabetes versions I marked as milestones along the way.

  • First time checking my blood sugar on my own.
  • First time giving my own shot.
  • Explained diabetes to a new friend.
  • Went to a sleepover and my mom didn’t come with me.
  • Earned my driver’s license and permission to get a car after proving I would check my blood sugar every time before driving.
  • Going to the endocrinologist by myself.
  • Moving out and living alone.
  • Managing emotional and physical diabetes-related complications.
  • Creating a family (this would earn me more people in my little car, right?  “People” being the little matchstick shaped things you shoved into the plastic car.)
  • Living beyond diabetes.

Trouble is, there’s no set path that diabetes takes, even with the best intentions and optimal care.  And the milestones aren’t always triumphant.  I’d be inclined to roll again if I landed on the “Manage diabetes distress pockets” or “Deal with health-related discrimination” spaces.

How do I talk about the emotional stuff tied to diabetes without shuffling those emotions right onto my daughter?  When she asks questions like, “Does diabetes scare you?” or “Are you afraid I’ll get diabetes, too?” I’m reaching to roll again.

How do I explain diabetes to my most beloved Bird?  I don’t.  Not entirely.  We have conversations about normal things, with diabetes built into the context clues.  When she was very small, we talked about how she should not push the buttons on mommy’s pump.  As she grew up, we talked about why I wore an insulin pump and other mom’s did not.  Sometimes conversations about low blood sugars came up and we dealt with those as part of the moment instead of scheduling a sit-down discussion with flash cards and a quiz at the end.

But she’s tuned in, and she notices things.  And in the last year or so, she’s elected herself captain of my support team.  If my Dexcom low alarm goes off, she drops everything she’s going and comes over and wraps her arms around my waist.  I don’t know what prompts her to do this – sometimes I think it’s the vacant look in my eyes when I’m low that makes her feel the need to double-check on me.

“Does this help, Mom?”

“It does,” I say, through a mouthful of candy corn.  “You help.”

If she were to list five things about her mom, diabetes might be on that list.  But it comes with expectations of conferences at Disney World and friends around the world, and sure, there are doctor’s appointments and moments where I need a few extra minutes and sometimes I am distracted by the need to reapply a sensor or prick my finger and all these things that beep, but that’s life with this disease. Diabetes is a cumbersome to do list that comes with a monster under the bed who I don’t often make eye contact with.

But we manage.

Explaining diabetes to her is its own challenge.  But sometimes, through her eyes, she re-explains diabetes to me.


Day in the Life of a New (Old) Mom … with Diabetes.

Six years ago, I was adjusting to motherhood for the first time during Diabetes Blog Week, and one of the post prompts was to write about a day in the life with diabetes.  My day in the life was flanked on all sides by figuring out what to do with a newborn, so I chronicled that.

And just before my son was born, I thought maybe – maybe? – I’d be less of a mess this time around?  Maybe I’d have things a bit more figured out, and a day in the life post wouldn’t read like a desperate plea for help?

Once again, ha.

A Day in the Life of a New (Old) Mom … with Diabetes.

6.30 am – Hi, little baby!  Let’s do this feeding/changing diaper thing … again, because it’s not like 6.30 is the first time our tiny tomato goes off.  On the overnight, the baby wakes up around 2.30 and then again around 6, so we’re hardly breaking a fast when breakfast time rolls around.  The main diabetes thing I do at this point is check my CGM graph, because the baby is usually fussing for food, so even the 45 seconds it takes to check my BG is not happening.  (What – did you want me to lie and say I am totally on top of my diabetes stuff?  Nope.)

7.30 am – It takes me about 30 minutes to change and feed the baby, and then I go into the bathroom to clean teeth, find face, etc.  It’s at this point that I should be pricking my finger to check my fasting BG, but my alarm usually goes off (set for 7.30 am, just in case, even though it is redundant when pitted against the baby) and then I have to run back into the bedroom and turn the alarm off so that it doesn’t disturb the sleeping babe.  At this point, I forget what I was doing and am only positive I brushed my teeth based on the delightfully minty taste in my mouth.

7.33 am – Check my CGM graph again.  Showing 60 mg/dL.  I’ll check my BG officially when I go downstairs to make breakfast, but for now I need to get ahead of that low and have something to eat before the breastfeeding aftermath hypo moment kicks in.  Hi, banana.  I’ll eat you.

7.35 am – Time to wake up the Birdzone and get her sorted for school.

7.40 am – “What do I need to do again?”  “Brush your teeth, go to the bathroom, and put your clothes on for school.”  We have the same conversation every.  single.  morning.  Hasn’t changed in two years.  Yet she still wonders what the morning routine involves.  (Note:  now the morning routine involves my head popping off and the subsequent reassembly of aforementioned head.)

7.41 am – Dexcom alarm is still going off, but I drank the half-kicked juicebox that has been on my bedside table for the last three days.  Relieved it hadn’t turned to wine after sitting out that long.  Or maybe I wish it had turned to wine.  #jesusjuicebox

7.45 am – 8.20 am – This is a messy pocket of time during which Chris and I orbit around one another in the kitchen, making breakfast, making school lunch, assembling work bags, finding shoes, checking on baby (who is usually asleep in the bouncy chair in the kitchen, blissfully unaware of the circus), etc.  Usually, I check my blood sugar during this time, and most often calibrate my CGM.  At 8.20-ish, Chris and Birdy head to the bus stop and I think about combing my hair.  (I do not actually comb it, though.)

NOTE:  I forced myself to ditch the extra-strength Tylenol prescribed to manage post c-section pain because it rendered my Dexcom useless.  The data from my CGM is beyond instrumental in helping me keep my wits intact in this postpartum period.  Blood sugars are very unpredictable as I adjust from pregnancy insulin rates to postpartum rates, in addition to the chaotic ebb and flow caused by breastfeeding.  I could manage without the CGM, but it’s much, much easier to feel safe and like I have some semblance of a clue when the graph data is streaming.  Dexcom gives me the 30 lives I need on some days, Contra-style.

[And I do have a relationship with Dexcom – disclosures here.]

8.30 am – noon – My intentions are good in this block of time.  I usually boot up my computer and open my email, letting the messages come flooding in.  I read every single email, and in my head, I compose useful responses … that never end up being typed and sent, because this block of time also includes a baby who needs to be fed twice.  I use the breast pump once (to build a supply stash for when I start traveling for work again).  I try and check my blood sugar once or twice more.  I spend at least half an hour coordinating the next round of pediatrician appointments, surgery follow-ups, and attempts at assembling a medical team here in Rhode Island (moving my care away from Boston now that I’m done pursuing pregnancies … more on that another day).  Oh, and there are baby snuggles.  MANY.  Because I did not work this hard for a baby to not snuggle the hell out of him.

So basically, I get a lot of important things done in this timeframe as it relates to keeping my son happy and cared for, but I’m spinning my wheels in a lot of other departments.  That’s okay – it’s Baby Time for the next few weeks/months, and I’m happy about that.

Noon-thirty – Tomato Man and I go for a walk around the neighborhood (using the stroller on days when I’m trending lower blood sugars, and on days when my BG is more stable, I wear him and walk that way).  This walk is necessary because it gets me out of the house and ups my mental health and happiness.

1.30 pm – Hey, lunch would be awesome, right?  I’m still trying to cook more at home/make some vegetable-based options, so my culinary creativity is at a high (despite cooking talent remaining woefully low).  I am not ravenously hungry most of the time, but I do want to snack/eat a small meal every two and a half hours or so (modeling my behavior after that of my son’s).  I’m kind of into protein balls (uncomfortable phrase) these days, and one version I like a lot is a peanut butter/pumpkin seed iteration that’s easy enough on my blood sugars but packs a caloric punch that keeps me from falling asleep.  (Will post the recipe tomorrow!)

2.00 pm – Baby snuggles.  And let’s feed him.  Oh, and snuggle him again. And restock the ever-waning supply of diapers and wipes.

3.15 pm – Use the breast pump.  (Our boy lost a fair amount of weight after delivery, so our pediatrician has been following his weight gain with interest.  We’re back up to birth weight, but our doctor has encouraged us to supplement breastfeedings with bottles of pumped breastmilk in order to ensure the little guy is getting enough.  So when he’s not attached to me, physically, the breast pump is.  Thankfully, he bounces easily from breast to bottle, so we’re thankful he’ll eat in a variety of ways.  Also, if you have dissenting opinions on how babies should be fed, can we just agree that babies should be fed, and leave it at that?)

4-something ish – Birdy’s school bus comes roaring through the neighborhood, and she comes scrambling off it, regaling me with stories about first grade and how much she missed her brother.  “I missed you, Birdy!”  “Yeah, but I missed HIM!”

4.30 – 6.30 pm – Another mangled window of time during which the baby is fed, changed, and snuggled.  Chris usually arrives home in this pocket.  Birdy (and a cast of characters from our neighborhood) rotate from house to house on their bikes, the embodiment of every gang of kids on bikes from 80’s movies.  I remember that I haven’t checked my blood sugar in a few hours, so I do that.  Dinner is assembled.  Dishes are ignored.  Loopy builds a biplane.

7.30 pm – Birdy gets a bath or a shower, and while she’s in there, I charge my CGM receiver or my pump (depending on which one is more depleted).  I’ve been trying to stick with changing my pump site every three days (the reminder for the site change on the t:slim is very useful these days, as I forget my name, nevermind when I last put an infusion set in).  Changing the site is hard sometimes because I hate wasting insulin, and sometimes my reservoir (even half filled) will last four days without any trouble.  I like using every last drop.

8.15 pm – Birdy is tucked into bed.  (When she actually falls asleep remains the mystery.)  Chris and I start to get punchy, realizing we haven’t properly slept through the night in weeks, and we know another long night is on tap.  And then the baby wakes up because hey, it’s getting dark out, and that means it’s time to wake up!

9.30 pm – I look at my email, cry, and shut my computer.  I eat a yogurt and wonder if it’s okay to eat these chickpea things straight from the bag with a spoon.

9.31 pm – I grab a spoon.

10 pm – Medical onslaught time.  As I’m getting ready to close up for the night, I need to take my blood thinner injection (thank you, Factor V Leiden and c-section combination – three more weeks of shooting up and then I’m DONE), my blood pressure medication (back on that as of last week), check my blood sugar, make sure my pump has enough insulin to last through the night, make sure my CGM receiver is charged, and that my bedside table is stocked with a glass of water (breastfeeding makes me dehydrated as eff) and something to treat low blood sugars with.  Baby is fed and changed, and tucked into his proper bed (in our bedroom).

And as I’m about to fall asleep, I realize we made it through another day, and we’re adjusting the best way we know how.  The exhaustion will give way to more sleep, and eventually we’ll be a few months out from life with a newborn and more in the swing of things.  (I know I will miss the warm, snuggly newborn cuddles a ton.)

We don’t have everything figured out, because our son is completely different from our daughter, so what we knew to expect is braided with a hefty dose of “what the hell do we do with that?!” sort of sentiment.  I have realized that all the preparing we did for our second child doesn’t actually prepare us … we’re still hot messes of exhaustion and confusion and hope.

And I also realize that it looks like I’m into some kinky stuff, considering the bag of marshmallows on the bedside table.  Whatever.  When you’re hypo, anything goes.

Month 8,455 of Pregnancy.

It’s been very quiet here on my blog, and this is because my body and mind entirely are being slowly devoured by the baby.  I’m nine days away from my scheduled c-section (but past 38 weeks, so could go into labor on my own any time) and my body hasn’t ever been this pregnant before.

The baby apparently likes being in there, though.  He’s content.  Happy.  Laid back and chillin’.

… good for him because I’m not as content or comfortable, by comparison.  My body isn’t tiny to begin with, but a full term baby in my not-very-tall frame is making me waddle.  And whine.  And I might have burst into tears when I had to pee for the third time in thirty minutes while taking Birdy school shopping.  Or when I realized that I saw 1 am, 2.30 am, 4 am, 5 am, and 6 am as a result of waking up and needing to scurry off to the bathroom multiple times due to a baby hanging out so low in my body that he could touch up my pedicure with ease.

And then there’s that weird rush of guilt for not feeling consistently hashtag blessed or hashtag grateful about the opportunity to experience pregnancy, to be having this baby.  Getting this baby going was the longest and hardest thing I’ve ever done, clocking in at almost a full three years between the “hoping for baby” and the “holding baby in my arms.”  I am beyond excited to meet my son.  I am also beyond grateful to be bringing another little friend into our family.  But here at the end of the pregnancy moments, I’m very, very whiny and my brain is in a dark space that I hope lets up a bit once I’m not as physically pressured.  I’m gigantically pregnant and I kind of feel like a blob of discomfort.  I’m beyond tired of sharing my diabetes with someone else, the pressure to be in range exacerbated by the panic of having diabetes adversely influence my child’s development.

I’m sort of emotionally done being pregnant, but my body isn’t quite done yet.

My body and I are at odds about this fact.

Weirdly enough, my body is completely fine with still being pregnant.  Blood pressures were good in the first trimester, low for the second trimester, and have just started to creep back up a tiny bit in the last week or two, but I’m still not on any kind of blood pressure medication (was taken off it at the beginning of the second trimester, once my pressures were registering so low that it was causing exhaustion), so that’s a success.  During course of this pregnancy, the protein levels in my urine are checked weekly and they’ve only flagged as suspicious once (about two month ago) and even the twenty-four hour urine collections came back entirely negative.  My weight is stable and in range (though still WHOA because 38 weeks pregnant).  I barely have any swelling in my feet and ankles.  My A1Cs have been a source of pride for me, and hard-earned at that.  Even my dilated eye exam (they do one every trimester) came back so unremarkable that I’ve been “downgraded” to visiting the eye clinic once a year instead of every three months.

This pregnancy, when pitted against the one with my daughter, is much healthier, by comparison.  And for that, I am really hashtag blessed.

But today, at 38 weeks along and the weight of his little world on my pelvis, I’m hashtag tired.  And hashtag done.  And hashtag secretly hoping they decide that tomorrow is a good birthday for the little nugget because that would be fine by me.  Once I am able to give him a good snuggle and kiss his head, I’ll be hashtag grateful all over the place.  And hashtag complete.

Spring-Loaded Navel Gazing.

(Edit: I had originally written “naval gazing” instead of “navel gazing.” Thus illustrating the point of this post, which is that my mind is quickly becoming mush. Thanks, Bobby, for the edit. 🙂 )

It’s week 35 of this fetus party.  All I have left to give are bullet points.

  • My stomach moves.  Often.  To be more precise, it’s my baby who is moving, and making my stomach look possessed in the process.  It’s jarring to look down and watch the swirling storm of baby boy moving around happily in there.
  • It was also slightly jarring to be onstage for a panel last week in NYC and to have the baby going berserk while I was trying to talk.  I hope attendees thought I was trying to emphatically state my case instead of trying to dislodge the baby from my ribcage.
  • (I may have been doing both.)
  • At this point with my daughter, I was already in the hospital on pre-eclampcia instigated bed rest, so it’s weird to be home.
  • Don’t get me wrong:  I AM HAPPY TO BE HOME.  Bed rest sucked and I have no desire to repeat that experience.  But the last time I was 35 weeks pregnant, I was trapped in hospital; this time, I’m home and trying to be a productive member of our household.  I have no concept of what I should/shouldn’t feel up to doing.
  • Problem is, I have a bit of a nesting problem.
  • If you click on that link, notice the picture of the lady who is showered and wearing make up and has combed her hair and is happily – serenely! – dusting the front of her cabinet. That’s not the kind of nesting I am feeling.  No serenity here.  I want to rip all the weeds out of the front garden with my bare hands, name them all, and then jam them into the compost bin.  I want to paint the upstairs hallway.  I want to crochet a tea cozy big enough to put over my car to protect it from bird shit.  The urge to reorganize the books in my office by color and then by author’s favorite ice cream flavor is taking over my brain.
  • And yet I can’t sit still long enough to answer more than five emails at a time.  There’s a disconnect between “productive use of my time” and “full-out hormonal spazzery.”
  • Being home instead of the hospital is great, but is bringing about a new set of worries that I didn’t experience with my first pregnancy.
  • Like “what happens when your water breaks?”  My water never broke the first time. My daughter arrived via scheduled c-section after a few weeks of close monitoring, so I never even had a contraction.  The first contraction I ever experienced was when I miscarried last summer, making me feel even more uneasy about contractions.  Mentally, I’m unprepared for labor.
  • Physically, I’m as prepared as I can be.  I am delivering at a hospital that is about two hours from my home, so the journey there can’t be delayed.  I have a suitcase packed.  So does my daughter (so she can spend a night or two with my mother while we help her brother escape).  But the idea of that drive on top of potential labor stuff makes me twitchy.
  • (Of course we have a more local, true emergency, plan, but I want to deliver where my established care team is, so that’s our goal.)
  • I am also in bi-weekly appointment mode with my high risk maternal fetal medicine team, which means I am in Boston twice a week to check on the baby and for any potential issues.  I have been told to bring a suitcase to those appointments, too, as they may decide it’s go-time based on a single appointment, and I won’t have another four hours to go back and forth again.
  • Which means I’ve been living out of a suitcase for the past week, and will continue to pack-and-repack the same suitcase until the baby is born.
  • Thankfully, I only have about three outfits that fit somewhat properly, so it’s an easy cycle of packing and unpacking.
  • And I still have diabetes.  Yep, still there.  Still chronic.  Still want to shove it into a tin can and send it down a garbage chute.
  • My total daily dose of insulin is up significantly from pre-pregnancy numbers, but not quite in the triple-zone that I hit before giving birth to my daughter.  With Birdy, I was taking just about 100 units of insulin per day to achieve solid numbers.  This round, I’m taking about 65 units per day so far, though numbers still might climb as these last few weeks progress.
  • My insulin:carb ratios are getting crazy, though.  I was at 1:12 before pregnancy, and am already down to 1:6 so far.  That ratio change is increasing my TDD the most, as my basal rates aren’t too ramped up.
  • A1C remains exactly where I want it.  As does my blood pressure.  My weight is … weighty, but my son is in a very good percentile, so that’s my main concern.  I’ll gain a few extra here and there so long as he is fine.
  • And I remain afraid to put my infusion set into the taut, bulbous chaos that my stomach has become, so my insulin pump has been rotating around my hips and arms for the last few months.  Thankfully, as I get bigger, real estate options expand as well, but it gets harder to install new sites when I can’t exactly bend at the waist.
  • HA!!  Waist.  I don’t have one of those anymore.  It was left behind back in May sometime.  See ya.
  • Siah thinks the baby’s room is HER new room, which is bullshit.  Even when we have the door shut, she picks the lock and eases herself in there, sleeping on the toy box in the corner and burping occasionally.
  • These cats have no idea what they’re in for.  Again.
  • Truly in the home stretch now.  “Stretch” being the operative word, as I have real concerns about the stability of my belly button.  I fear that if I cough or roll the wrong way, it will launch from my body and hit the wall, like a champagne bottle cork.
  • Bring it on, kiddo.  I’m ready to meet you soon.  And to be reunited with a view of my feet.


Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.

The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

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