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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.

 

What Happens to Your Brain When You Don’t Sleep.

There’s a little boy who lives in my house now and he seems to likes us.  He likes his big sister and he likes his mom and dad and he likes the cats.  He likes socks.  And fluffy blankets when we go on walks.  And he loves taking naps while the sun shines through the living room windows.

All awesome.

What he doesn’t like is sleeping during the night.  He fucking hates that.

As a result, we are not sleeping at night, either.  The dance of feed/change/snuggle/attempt sleep/feed/change/snuggle is endless throughout the night, making the baggage under my eyes significant and the days are starting to blend together into one, big diaper change.  My mind is on a sad circuit of this monkey:

But this is a diabetes blog.  So how’s the diabetes stuff going?  There might not be sleep, but is the brain responding to diabetes related requests?

Shit, the same gif.  That’s not optimal.

Diabetes is still there.  I still have it.  It didn’t “go away after I had the baby.”  And sometimes, throughout the day, I have myself fooled into thinking I’m on top of things.

But I’m sort of not.

Stuff I’m not on top of:  

Blood sugar checks are not happening as often as they were, or as they should be.  I’m checking my fasting blood sugar (making a point to do it immediately upon waking, because once I’m out of bed, I space out), but that’s sometimes it until after lunch time.  Not optimal once again.

Exercise is also not happening, but that’s because I’m still under the lock-and-key of the c-section.  My six week follow up is in two weeks and I’m hoping to be cleared for exercise, etc. but until then, I’m doing slow walks around the neighborhood with the tomato in the stroller and hoping my scar doesn’t rip open and all my guts spill out.  (This is a mental image I have with frightening regularity.)

Food remains a challenge, as well.  Weirdly enough, I’m having trouble eating enough these days (a stark contrast to my delight at eating too much a few weeks ago) and my spotty food intake is making breastfeeding a little bit of a challenge.  (As in, I produce less on days that I consume fewer calories.  It’s a frustrating tell.)  I am trying to make more grabby, healthy snacks (see also:  balls) so I’m able to eat on the fly without too much effort.

But this will all come with time.  Or so the mystics tell me.

Hey, but there is stuff I’m still on top of:

I’m still using the Dexcom every day,and that data is keeping me informed on how SWAG-gy my boluses have been.  My graphs have been all over the place, but I chalk that up to hormones re-balancing after giving birth, insulin:carb ratios being tweaked for postpartum needs, and a sleep schedule that is abysmal.

I’m also on top of my doctor’s appointments.  As I mentioned a few days ago, I’m building a hyper-local care team from the ground up and I’ve been on the ball about finding doctors, scheduling appointments, and working to flesh out the team.  So far, so good.

And I’m staying on top of what my kids need.  Laundry is all clean (granted, not folded and put away,  but all clean and a lovely, sorted mountain of clean it is!).  I have a steady flow of breastmilk being stashed in the freezer (in anticipation of upcoming travel, Grammie visits, and overnight feedings that Chris handles).  The Bird is being shuttled to friends’ houses and soccer practice and school without missing a beat.  My son is fed, diapered, and hugged a bunch, and is a very laid-back (albeit nocturnal) baby.  I might have only JUST NOW sat down to answer emails and work today, but my frigging KIDS are managed, so I’m calling today a mangled version of success.

Soon – SOON?! – we will be reunited with sleep.  Just in time for the time (and lancet) change.

Looking Back: A Matter of Apologies.

I’ve been up since all hours with my son, who has decided that he would prefer to count stars with me between midnight and 4 am.  But now he’s asleep and I’m wide awake.  And as I was answering emails this morning, I came across this blog post about apologies.  

I’ve been apologizing often these days, with my emotions ramped up due to postpartum stuff and the lack of sleep making my fuse shorter than usual.  This post made me think forward to when my son is older and starts to learn about how diabetes affects his mom’s temperament at times.  Oh, and what happens if you leave a banana in the car too long.  

  *   *   *

“I was low.  I was frustrated because of the low blood sugar.  I’m sorry.”

“It’s okay,” and I can tell she means it by the look in her friendly, brown eyes.

I used to be very terrible at saying, “I’m sorry.”  I would hold on to frustration and anger in a way that was not good for me or anyone around me, making a grudge or the need to feel like I “won” the disagreement take precedence over a relationship.  I’d keep “I’m sorry” under my tongue because I didn’t want to admit that I’d done something that hurt someone’s feelings.  I felt embarrassed to admit my shortcomings.  It felt awkward and bad.

It took a long time for my head to figure out that my heart was better off if I let the sorry fly, but once I came to that realization, I tried to embrace as often as I could.  (I also had to work on the “does this interaction make me better or worse as a person?”  This is still a work in progress.)  Now I’m less terrible at saying, “I’m sorry,” and I feel better for it.

As much as I hate to admit it, my blood sugars are not only influenced by my emotions (stress, anyone?) but they influence my emotions, as well.  The way my numbers make me physically feel can cause me to act like a total crumb.  It’s another reason to be aware of what my blood sugars are, and if I enter the Crumb Zone, apologize for it.

I find myself apologizing to my daughter at times for entirely blood sugar related reasons.  Sometimes I snap because I’m taking yet another bolus to correct yet another high and my body is riddled with sugar and rage, and I will be far less than patient with my little one as a result.  Other times I raise my voice because I’m trying to treat a low blood sugar reaction and she’s at my elbow asking to [insert rogue request from active 5 year old here].  Losing my patience during the course of run-of-the-mill parenting is something I am not proud of, but losing my patience because diabetes is leaning on my parenting style is something I want my kid to understand as best she can, because I don’t want her ever thinking my seemingly random outbursts are tied to her in any way.

It’s a weird balance between feeling like I’m blaming diabetes for my actions and simply explaining my actions.  Am I in the Crumb Zone (or Mayor of Crumb City, if you’re nasty) because of diabetes?  Nope.  Diabetes doesn’t get credit or get blamed.  But sometimes this disease is part of the explanation, and I want my family to have a sense for how, and why, I’m wired a certain way.

There are moments when Birdy assumes my attitude problem is diabetes-rYes, this whole post was an excuse to use the Siah-in-a-banana picture again.elated when it’s not, and I’m forced to fess up.

“Are you in a bad mood because of a low blood sugar?” my daughter asks, pointedly.

“Not at the moment.  Right now, I’m in a bad mood because I just realized I left a banana in the car while I was on my trip last week.  And now I’m afraid to open the door and confront the banana stink.”

“It’s okay,” she says.  And then adds, “Ew.”

 

Bliss Balls.

Do you know what bliss balls are?  I had never heard of them before.  There’s a coffee shop near the beach out here that sells these bliss ball things.  They look like desserty meatballs and are kept in a glass jar near the cash register.  If you’re sleep deprived, they look like pets held captive by the bakery ladies.

Chris bought one on a whim, assuming it would taste like garbage and we’d laugh about eating balls, but instead we thought it was delicious and felt ashamed at our immaturity.  To reclaim adulthood, we decided to attempt making our own bliss balls at home.

The sign at the coffee shop claims the ingredients are oats, peanut butter, honey, pepitas, coconut, and cinnamon.  The girls who worked at the coffee shop had no idea how much of each ingredient to use (Of course I asked; I’m baby-wearing and existing without sleep … no shame in going full-Mom and asking the college kids how to make bliss balls, right?), so I had to wing it based on the ingredient list alone.

I’m not a good cook, but I am good at baking, so I decided to give these bliss ball things a try.  The only missing element was that I didn’t have a recipe to follow.  Instead, I combed the web for different recipes and mushed them together, eventually following this one mostly, only tweaking it to fit the ingredients on the coffee shop sign.

Ingredients:

1/4 cup honey
1 3/4 cup peanut butter (the oiler, the better)
3/4 cup shredded coconut
3/4 cup pepitas
cinnamon (to taste)
1/2 teaspoon vanilla extract

Directions:

  • Put all of these items, except the pepitas (have you Googled that word to find out what the hell pepitas are yet?  I’ll wait …), into a bowl.  Stir everything together.  The mixture will resemble cookie dough.  Or meatloaf.  Cookie meatloaf.  (Mistyped that as “meatdough” initially.  Gross.  Going with it.)
  • Take the meatdough mixture and taste it.  Does it taste kind of like a snickerdoodle cookie with the texture of an almost-granola bar?  (My descriptions are not good when it comes to bliss balls.  On the whole, I think they look like meatballs or truck nuts, but they taste so nice and they are so mellow on my blood sugars that an embarrassing appearance becomes a non-issue.)
  • If the mixture tastes right to you, add the pepitas.
  • Shape the meatdough into round balls about the size of a golf ball and place them on a cookie sheet.  We put ours into the freezer for 20 minutes, then moved them to a tupperware dish and layered them in there, separated by sheets of parchment paper.
  • After about two hours, the meatdough will have “set” and the bliss balls will be all blissful.  Eat them with your face and forgive them for what they look like.

(Note:  I do not have an artsy-bloggy photo of the bliss balls, as they do not photograph well.  Use your imagination.  Or look at this Pinterest board for hints on how other people have done this sort of thing will more success.)  

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.

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