Skip to content

Posts from the ‘Real Life Diabetes’ Category

Word Choice.

“Mom, why do you wear that bracelet again?”

She knows why, but every few months, she asks again.  Why do I wear a medical alert bracelet?  Why is that thing as important to leaving the house as having my keys?

“I wear it because it says I have diabetes, just in case someone needs to know.”

“Why would they need to know?”

“In case I wasn’t able to say it myself.  Like if we happened to be in an accident or something, or if I was asleep.”

She thinks about this.

Medical alert bracelet #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

“Is this why we have a house phone?”

“Yes.”  She knows the reason but asks anyway.  We decided to get a landline telephone in the event that there was a storm that knocked the power out, or if we had a babysitter and needed to call the house.  Or if my husband or children ever needed to call 911 on my behalf.  “We have a house phone on the waaaaay off chance that I’d have trouble waking up because of a low blood sugar.  You know, if I was passed out.”

I forget that the words we use matter.  That they are easily confused and conflated.  That she’s just a little kid.

“Passed out?!!”

“Yes, but that’s a very rare thing.  It hasn’t ever happened to me.  It probably won’t ever happen, but it’s smart to be prepared, just in case.”

“PASSED OUT?!!!”

It was then that I remember hearing her and her friend talking about her friend’s grandmother, who had recently passed away.

“OUT, honey.  Not AWAY.  Passed out means I would be having trouble waking my brain and body up and need extra help.  Not dead.  It’s very different,”  I scooped her up and held her close, aiming to hug the panic away from her as I listed all the reasons why passed out was different from passed away and also how it wouldn’t ever happen to me, right?  Right.

The reality of my own thoughts every night before bed stood in contrast to the confidence in my voice talking to Birdy.  The thought is fleeting, but also sharp and cuts through my mettle, reminding me that diabetes looks easy and seems quiet but exists with an undercurrent of worry.

And I’m learning that I’m not the only one who worries.

Digging Up Some Joy.

I have been trying to actively distance myself from the desire to dive deep into all the bad stuff that’s been going on lately.  Headlines get more and more distressing and humanity seems to have gone off the rails.  It feels gross to even watch the news because … well, the news is gross.  Everywhere.

Happy frigging holidays, right?

I’ve been in a little bit of a buzzkill cycle and I need to bust out of that in a hurry.  So I’m actively digging up some joy in order to remind myself that there is joy out there, and in here, and in me.

  • HAPPY! HAPPY! JOY! JOY!  – My son had his first sleepover at my mom’s house, which was a success.  And after I fell asleep on the couch at 9 pm and then moved upstairs to bed at midnight (after pumping and then freaking out briefly because I had almost forgotten to move the Elf – more on him in a second), I slept through until it was time to wake Birdy for school.  That’s a lot of sleep.  It helped make me feel like an adult human again.
  • HAPPY! HAPPY! JOY! JOY! My insulin pump took a hard hit against the bathroom tile yesterday and didn’t get injured at all.  Same goes for my cell phone, which was accidentally thrown across the room in a separate moment.  Props to durable devices.    
  • HAPPY! HAPPY! JOY! JOY! – Nothing says loving like a giant iced coffee.  Nothing.
  • HAPPY! HAPPY! JOY! JOY! – My son has just realized that his hands are attached to him and that they are delicious.  He also figured out how to manipulate said hands in order to grab squishy blocks or to pat my face.  After several months of doing the route infant circuit, the smiling and grinning and playfulness of this little boy is exciting and adorable and makes me so happy.  He is the smiliest of all the Guy Smilies.  I love watching him explore and expand his world.
  • HAPPY! HAPPY! JOY! JOY! – The Birdzone has also recently discovered the Elf on the Shelf, which means we have one in our house.  His name is Chippy.  I love him because she is so excited by his presence, but I kind of hate him, too.  Waking up at 1 am by inhaling all the oxygen in the room in a panicked “ohmygodthefuckingelfneedsmoving” moment is not optimal.  But her face when she sees where he’s moved to gives me intense happies.
  • HAPPY! HAPPY! JOY! JOY! –  My neighborhood is awash with holiday decorations and people hanging out.  I love this stuff.  Mostly because we live among some really wonderful people, but also because of cookies and holy shit are there some delicious cookies going on.
  • HAPPY! HAPPY! JOY! JOY!  Like these cookies.  Four ingredients, one of which is peanut butter so instant win.  I would live inside of a tin of these cookies, no problem.
  • HAPPY! HAPPY! JOY! JOY!  – Also, in terms of recipes that bring joy, check out these penguins.  I want to make a waddle of these little fellas and set them loose in the neighborhood.  (Note:  It feels so right that a group of penguins is also called a waddle.)
  • HAPPY! HAPPY! JOY! JOY!  Also, the cats are no longer experiencing feline PTSD (yes) as a result of the little Guy joining the family.  Siah’s hair isn’t falling out anymore and Loopy has stopped pawing relentlessly at the bedroom door.  (And now that they are back to being their normal cat selves, their nocturnal routines have returned in full.  Which means that Siah’s chubby ass going down the stairs happily at 3 am sounds like the heavy boot steps of someone who has broken into my house.  Cat burglar?)
  • HAPPY! HAPPY! JOY! JOY! – Exercising is also still going forward, albeit a little tangled up with my family’s constantly-shifting work schedule.  And that’s a plus, since I was feeling very sluggish and lazy these last few months.  Related:  The West Wing is a good show.  Currently a few episodes into the first season and am getting way into it.
  • HAPPY! HAPPY! JOY! JOY! – Also, I started using the Verio Flex (switched from my beloved Verio Sync) and that’s been a good experience, too.  The meter has less of an MS-DOS feeling than the Sync, and I’ve returned to uploading my meter results to the Reveal app.  Granted, I’m still not checking my blood sugar as frequently as I’d like to be (aiming for six times a day, still only clocking in around 3 – 4 times per day … but am wearing my Dexcom religiously, so that’s a plus), but the meter itself is a good upgrade from the Sync.
  • HAPPY! HAPPY! JOY! JOY! – And one thing that’s been consistently bringing good feelings to the forefront has been the diabetes community.  Seriously.  Every time I manage to log on and check out what people have been writing, it’s confirmation that people are in this to help one another.  From new voices in the DOC (like Today with Tubes and the posts on DOColors) to a whole list of benefits to life with diabetes (thanks, Catherine!) to policy efforts and #insulin4all and organizations aiming to improve lives for PWD, this community is still a huge source of good in my world.  I’ve always valued this space, but lately it’s been a bright spot in these times of crappy headlines.

Man, that felt good to list.  Channeling Ren and Stimpy entirely now.

Accountability.

We have a newly-minted kiddo.  That’s an established fact.  He is cleaned, fed, and loved all day long.

Here’s the problem:  I’m not cleaned, fed, or loved all day long.  It’s embarrassing to admit that, but it’s the truth.  I’m struggling hard with self-care.  And I also kind of buck up against even the admission of struggling with self-care, because parents in general are sometimes tsk, tsk‘d for putting their needs on the to do list at all.

But that oxygen mask metaphor that I used back when Birdy was born?  Applies to the little Guy, too.  I can’t take care of him, or her, or anyone if I’m off my own game.

Maybe I’m not off my game so much as I need to change the game.  Gone are the days of plotting and spreadsheeting fertility goals, and with them went the fastidious monitoring of blood sugars and doctor’s appointments.  It’s okay to loosen the reins a bit there, but I need to keep up some semblance of diabetes management.  Checking blood sugars?  On it.  Using the features of my insulin pump to my advantage, like inputting my blood sugar and carb intake and letting it calculate my insulin needs?  On it.  Keeping my CGM graph top of mind instead of succumbing to alarm fatigue?  I can do that, too.

But oh the exercise and food thing is a frigging quest.  Uphill.  In the snow.  With that Sisyphus ball thing.

I thrive when held accountable, and I need accountability in order to reignite some healthier habits.  There was a short discussion about this on Facebook last week, which led to the creation of a small Accountabilibetes group, where we’re trying to help one another stick with some kind of exercise program, and that camaraderie has been a big boost.  Even though the weather has been fuck all cold (snowed last night), I’ve been back on the treadmill the last few days, easing in with some interval training that’s heavy on the incline and gentler on the speed for now.  (I’ve started watching The West Wing, which I’ve never, ever seen even an episode of before.  Now I have seven seasons of Sorkin-saturated dialog to work through.  Should keep me entertained throughout the winter treadmill months.)  A fully-charged Fitbit helps, too, as I’ve avoided that thing for the last 12 months as well. As far as food goes, improved food choices usually follow exercise for me, so I know that I’ll battle food temptations less when I’m physically active.

So far, it’s only been a few days, but I’m hoping that a few more days will wet cement these habits.  Once that mental cement sets, I’ll be in my pre-pregnancy planning circuit and my health overall will improve.  Right?  RIIIIIIIIIIIGHT.

Before that cement dries, I need to stick my finger in it and write “It’s worth it.”  And maybe also draw a cat out of the word “cat.”

#amadiabetes: Preparing for College.

“In your senior year [of high school], what did you do to prepare for being away from caregivers?”

This question came in from someone through the #amadiabetes form, and I have some ideas.  Thing is, I only have one version of the answer, so I’m hoping others from the community can chime in either here in the comments section or on Twitter using #amadiabetes so that the answers can be seen.

What did I do to prepare for being away from caregivers?  I spent a lot of time trying to ease myself into taking over most of my diabetes care.  And part of that meant talking with my caregivers about what their expectations were, what my diabetes required, what I wanted, and how all those things ended up in a blender together.

Diagnosed as a kid (age seven), my parents stepped in immediately to manage my diabetes.  I was taught how to inject insulin, check my blood sugar, and we talked about the influence of food, exercise, and stress on my blood sugar, but the bulk of the worry and tasks were heaped on my parents.  Specifically my mom, who would check my blood sugar while I was asleep. (She would wake up early to get ready for work and would check my BG first thing … she said my hand would come out almost automatically from underneath the covers, one finger extended.  A PWD reflex.)  My mom assumed/absorbed most of the diabetes-related worry, leaving me to focus on being a kid and letting the torch of care be passed to me bit by bit.

Here’s what worked about how we passed that torch:

  • By the time I was a senior in high school, I had developed a sense of what it took to manage diabetes, and my responsibility for my own care was openly discussed.  My parents made diabetes management part of earning my license (no keys unless there was consistent evidence of checking my blood sugar before getting behind the wheel).  They punished me not for blood sugar results but for the lies about what might have influenced certain results.  (See also:  the time I lied about eating cupcakes)  Diabetes wasn’t something they put on a pedestal; it was treated with careful consideration.
  • Around the time I was 16, my endocrinologist started splitting my appointments between me and my mom together and then just me.  It was empowered as hell to be able to talk with my endocrinologist without a parental ear listening in.  I was able to be honest with my doctor and talk about my concerns or issues without worrying that I was contributing to my parent’s worry.  This approach helped me gain autonomy when it came to my disease.
  • I wish CGMs had been available when I was in college, because I totally would have worn one.  Partly because I would have wanted to be able to see my blood sugars in context, but also because the option to cloud my CGM data would have been enough to take a bite out of my parents’ worry … even if they were not the ones watching my numbers.
  • Before I started college, my mom brought me in on ordering supplies (at the time it was limited to test strips, insulin, and syringes, as I wasn’t on a pump and CGMs didn’t exist).  I gained some insight on what it took to manage the insurance side of all the diabetes crap, which helped me take the reins when I was out of the house.
  • And my parents always impressed upon me the importance of telling someone else that I had diabetes, as a safety net.  They never made me feel as if it was something I was supposed to hide.  Just get it out there, make people aware, and let that awareness serve as an umbrella of protection if I needed it.
  • My parents also had to make an effort to back off while letting me ramp up.  I’m sure that was really hard, but they gave me room to flex my independence and for the most part, it wasn’t a disaster.
  • I also discussed diabetes with my roommate before moving in.  More on that in this dLife column.

Things that we could have done better?

  • I wish there had been more food freedom when I was a kid.  Unfortunately, I was diagnosed in the time of NPH and Regular insulin, so we were always responding to the peaks of my clunky, injected insulin.  Food choices were really restricted due to that, and also because my diagnosis was literally met with a list of foods I couldn’t eat anymore.  That was the case for lots of kids diagnosed back in the 80’s – diabetes came with a list of “can’ts.”  Food was a loaded topic for me and as a result, the freedom of dining halls with unrestricted access and no parental supervision left me over-eating regularly and also over- or under-bolusing for my meals.  I didn’t know how to manage my own portions, and that took some time to figure out.
  • I also wish I had brought a mental health professional into my diabetes care team before college, because that would have helped me sort through feelings tied to disclosure and confidence in college.  My college experience opened me up to the fact that, once again, I was the only PWD in my circles, and I had some trouble being a soloist.  (I wish the diabetes online community had been a thing back then. I could have used the connections.  I’d recommend college students today check out the College Diabetes Network for support.)
  • And I should have had in-depth discussions with my endocrinologist about the effects of alcohol on my blood sugar.  I had to trial-and-error that experience myself, since I was afraid to bring it up to my doctor and also admit what I was doing to my parents.  I wish I had had a better grasp on how alcohol and diabetes mixed because there were some very tricky lows during college that could have been avoided, had I been more educated.

The bottom line?  I survived and thrived, with a lot of effort and a little luck.

How did you prepare for college?  How did your caregivers help you prepare? #amadiabetes

Second-time Motherhood.

This whole mom thing is a little easier, in some respects, the second time around.  And it’s simultaneously harder by a frigging long shot.

It’s easier because my son’s arrival wasn’t as jarring as his sister’s.  Going from no kids to one kid was like WHOA.  Going from one kid to two kids was lowercase whoa.  Chris and I are already six years into parenthood, so we weren’t shocked by the boxes of diapers that stashed themselves in the closet.  (We were slightly shocked to discover what we’ve saved for the last six years, like the stroller.  Blew cobwebs off that sucker.  And the high chair.  Found six year old puffs tucked into the hinges.  Very thankful we saved all of Birdy’s little bird clothes, because so many of them have been repurposed for his tiny butt.)  So all the “stuff” that comes with little babies was expected.  We also knew a lack of sleep was to be expected.  In addition to a marked uptick in discussions about poop.

What people told us about parental reactions to second kids seems true so far, too.  We aren’t as scared to hold him, or to hand him to family members to hold.  The little wobbly head and neck feel familiarly easy to support.  Changing a diaper is business as usual (except for the different set of parts in play, where the fear of being peed on takes a whole new trajectory … quite literally).  We even assembled the crib without too much trouble, despite needing to reorder the hardware kit because that somehow disappeared in the last six years.  Yet we easily found the old bottle warmer.  Whatever, storage wars.

Even recovering from the c-section was familiar, though no less annoying or uncomfortable.  Now, two months later, my scar is light pink and fading and doesn’t feel as if a sneeze would rip it open and send my organs shooting across the room.  (A real, yet unreasonable, fear I had this time around.)  I’m able to walk on the treadmill and go up the stairs without pain.  Feeling more human and better armed to take care of my kids.

But those first few sleepless weeks?  Holy hell, they hurt.  Sleep was not a thing for many, many weeks.  I started to crack up a little, only sleeping an hour at a time.  Add that to the established needs and schedule of the Birdzone and my brain was slowly refusing to think thoughts due to lack of sleep.  I was once again confused about how the hell to snap up his overnight pajamas.  So much so that I ditched snaps entirely and the little guy been sleeping in those lovely sleep sacks for the last two months.  (We have an arsenal of them in rotation, because he has a tendency to tear through them with reckless, spit-uppy abandon.)  I may have cried at random a few times because I was so damn tired.  Thankfully, the little man has given in to sleep for three or four hours at a clip at night, so things are improving.

I also sort of forgot about breastfeeding.  I forgot the sound that the pump makes (that hiss-hiss-hiiiiiiiiss) and how cumbersome it is to use in public.  I forgot about the weird combination of pain and relief it physically provides.  And I forgot about the constant need to either feed or pump.

Last week, I officially started traveling again and for the first time used the pump in public places, like an empty conference room in Boston (thanks, Anna!) and the airplane bathroom.  With Birdy, I was reluctant to do anything breastfeeding-related in public because I was so unsure of myself, but this time necessity dictates my actions, so no time for shy.  On a plane this past Friday, I needed to pump and took zero time getting into the airplane bathroom and pumping for a few minutes.  Same in the airport (thank you, Mamava in the Atlanta airport).  Same at the meeting I attended at the University of Georgia, where I walked onto a college campus with my insulin pump in my pocket and my breast pump in my bag.  So far, we haven’t needed to bring formula into the equation (save for an ounce we needed to administer in the hospital – thanks, diabetes, for the delayed milk arrival and a dehydrated baby), and I’m hoping I can keep up with breast milk production despite returning to work travel.  Traveling with breastmilk through TSA is a hassle, though, so adding that to my already-diabetes influenced TSA troubles makes getting through security its own damn trip. Still working out the kinks there.

However, I do definitively recall the chaos that an infant brought to my diabetes care.  Until just a few days ago, my body was still adjusting to breastfeeding, so weird low blood sugars would come swooping in unpredictably after feeding or pumping.  Jars of glucose tabs were ripped through in record time.  I’m only now starting to even out and predict the hypos, which helps a ton.  But staying on top of things like checking my blood sugar and eating regularly remains tough.  Throw in a broken Dexcom receiver and a suddenly-dead transmitter and I’m in a world of data-free diabetes hurt.  New receiver should arrive tomorrow, along with new transmitter hopefully this week.  Setting an alarm on my phone to check my BG every two hours is helping me stay on top of things, but I’m having an A1C drawn this week and I know it’s going to be a far cry from the numbers I saw before and during pregnancy. I’m actively and aggressively trying to stay on top of diabetes needs despite wanting to shelve all that shit for a while.

But I also remembered that, with a baby comes this strong and steady flow of love.  Like so many other parents, I was a little worried that my heart would have trouble making room for another kid.  I was so, so wrong to worry.  There’s more than enough room for love this time around. This baby boy smiles at me and I become instantly stupid, all washed over with love for him.  He’s been here the whole time, only now I can hug him.

… he’s quite a dancer, too.

#diabetesdancedare party time. We challenge @textingmypancreas @mrmikelawson and Victor Montori.

A video posted by Kerri Sparling (@sixuntilme) on

 

Follow

Get every new post delivered to your Inbox

Join other followers