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Posts tagged ‘type 1 diabetes’

My Third Child.

Diabetes’s needs are incessant.  WAAH I need to have my blood sugar checked WAAH I need a snack WAAH the Dexcom sensor needs swapping WAAH what do you mean, reorder insulin WAAH chronic illness is forever WAAAAAAAAAAH.  This disease whines and cajoles for attention all day long.

Over the weekend, I stood at the bathroom counter changing my infusion set while Birdy brushed her teeth and the little guy sat singing in his bouncy chair.  A loud burst of noise not unlike an industrial-sized coffee carafe percolating came from the bouncy chair, which prompted Birdy to announce (through a mouthful of toothpaste suds), “He needs a diaper change for sure.”

True.  (And ew.  Ew-true.)

Diabetes always needs a diaper change, too.  But diabetes is not cute.  And while it also wakes me up in the middle of the night for feedings, it doesn’t reward me with a toothless smile or a snuggle.  These days, diabetes management feels thankless, frustrating, and very ARGHH would you just go AWAY?!  Getting into the swing of things with two kids is still an adjustment and I’d like very much if diabetes would go quiet for a spell.

Unlike with my daughter, I am not deep into diabetes burnout this postpartum cycle, but I’m not a big fan of all the diabetes crap that’s still on tap.  Small victories keep me going at the moment, like keeping up with inputting the data into my pump (so it can properly calculate my insulin doses instead of me SWAG’ing things) and trying to treat lows conservatively.  But I have blood work orders in my wallet that I still haven’t followed through on (they’ve been in my billfold for three weeks now).  My fasting BG checks are sometimes taking place two hours after I’m woken up by Guy Smiley.  I’m wearing the Dexcom but there are hours worth of highs that ride for too long.  I reorder my supplies on time but mostly because I’ve reached my deductible.

I need to shake this settled snow globe of apathy that my diabetes has become.

Oh hey, awesome turtleneck-wearing cat in a snow globe.

I have an appointment with a new, local endocrinology team at the end of the month and I’m actually looking forward to it.  This appointment will be a paradigm shift in my care, taking a break after 30 years at Joslin. Like hitting the reset button, bringing my care hyperlocal and giving the visits a facelift.

Until then, I’m trying to parent all three “kids” in my house and keep them all safe, sound, and freshly-diapered.

Gift Ideas for People with Diabetes.

What do you get for the person who has everything … except a working pancreas?  Here are six (until me) of my favorite d-related things:

  1. Medical alert jewelry.  Looking for medical alert jewelry that isn’t clunky or ugly? I’ve always loved this simple, classic bracelet from StickyJ Jewelry and have been wearing it daily for the last few years.  It’s comfortable and chic!
  2. Diabetes books.  This one is entirely self-serving, but if you’re looking for some diabetes reading, you can pick up a copy of my book, Balancing Diabetes, or check out any of these other titles that are diabetes-centric.  Nothing like curling up with a good, islet-inspired book.
  3. Jerry the Bear.  How about some diabetes that you can cuddle?  Check out Jerry the Bear, a stuffed animal designed to teach kids about diabetes through play.  (Read more about how my daughter bonding with Jerry here.)
  4. Donate.  You can make a difference for PWD by donating to your favorite diabetes organization or charity.  Help support Children with Diabetes and keep this amazing conference going, or give thanks through the Diabetes Hands Foundation thank you cards, or consider sparing a rose to help provide life for a child.
  5. Diabetes accessories.  Bring some festive flair to your diabetes devices with accessories from Tallygear or Myabetic.  These two shops blow the basic black meter case out of the water.
  6. Diabetes decals.  Dress up your meter, or pump, or Dexcom with some designs from PumpPeelz.  You can even design your own decal right on their website!

Happy shopping, and if you have a favorite diabetes product, service, or accessory you’d like to share, please feel free to do that in the comments section.

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

 

Thanks, Diabetes!

Feeling bummed about the bullshit of diabetes?  Me, too.  I needed to find a few things to appreciate about this disease before I tried to throw it off the deck.  So here we go.  A quick round of “Thanks, Diabetes!

  • I had to get my flu shot two weeks ago.  The needle was big and went right into my shoulder muscle but I did not care as I do needles all the time.  NBD.  Thanks, Diabetes!
  • I mentally smirk every time I get on the highway and see the speed limit sign:  65.  Always makes me want to throw glucose tabs at the pavement.  Giggle well spent.  Thanks, Diabetes!
  • I had a long, drawn out phone call with someone at my insurance company’s office, all in pursuit of confirming coverage for some high-risk related ultrasounds when I was pregnant.  The woman who had to deal with me was extremely nice and helpful, and she made me laugh out loud more than once.  Were it not for my stupid disease, I never would have chatted with this awesome lady.  Thanks, Diabetes!
  • I was able to efficiently remove a splinter using a steady hand and a sharp lancet.  Thanks, Diabetes!
  • This week, I’ll have a chance to hang out with friends who might not make insulin but who definitely make the world a better place.  Thanks, Diabetes!
  • The charging cord for my t:slim pump happens to fit the charging port for the bluetooth speaker whose charging cord recently up and disappeared.  Thanks, Diabetes!
  • I forced myself to join some friends for a walk this morning in pursuit of bringing my blood sugar down just a little bit.  Had I not put blood sugars into the top priority bucket, I wouldn’t have had the opportunity to spend a little quality time outside in the sunshine with friends.  Thanks, Diabetes!
  • I bought two bags of candy corn and completely considered them a “medically necessary expense.”  Thanks, Diabetes!

Beyond Type 1: LOVE IS ON.

Despite being up to my eyeballs in parenting stuff [insert baby who doesn’t sleep at all at night plus a big sister who had her first ear infection over the weekend here], I have been online.  And I’ve totally seen the Beyond Type 1 black-and-white photo’d community posts scrolling by, asking for donations and awareness for the Revlon LOVE IS ON Million Dollar Challenge.

I’ll admit that I was a little confused at first.  If Beyond Type 1 was aiming to win a million dollars from this campaign, why were they fundraising?  Of course the goal is to earn $1 MM for Beyond Type 1 courtesy of Revlon, but why are people fund raising if the goal is to win the big prize?  Is it to show how much the community can raise first?  Also, what does Beyond Type 1 plan to spend the prize money on?  I’ve been very impressed by the presence that Beyond Type 1 has created in the diabetes community, but I’ll admit that I’m not exactly sure what the organization does, or plans to do, outside of awareness.  (And I’ll also admit that I haven’t been focused on diabetes stuff in the last seven weeks, making me unaware of The Obvious lately.)  I needed to learn more.

So I emailed with Mary Lucas, Community Partners and Programs Manager for Beyond Type 1, and she provided me with some clarity for my confusion.   (All italicized answers below are from Mary, who is patient beyond patient when it comes to replying to multiple scattered emails from this exhausted new mom.)

From Mary:  

The Revlon LOVE IS ON Million Dollar Challenge is a six week challenge that 150 charities were invited to participate in. At the end of those 6 weeks, the nonprofit that has raised the most money total is awarded an extra $1 Million from Revlon. There are smaller consolation prizes for second and third. Every charity still gets to keep their money raised, it is just an extra added bonus. On top of that, the nonprofit that wins would be accepting a comedically-sized large check in a very public setting with media, etc. and would subsequently drum up a ton of press and hype around that charity and the cause associated with it. It would be really great to have a diabetes charity up there accepting the $1 Million from Revlon, as it would really help get T1D into the mainstream press and media.

As a non-profit, all our operations are covered by leadership and founding friends, so 100% of all money donated to us goes back into our portfolio of programs and investments.   This means we are fully operational funded, so $1 in to us is $1 back out into the diabetes community, not 75 or 80 or 90 cents, but the entire dollar, which is pretty rare for a non-profit. So far, we have invested in both our own native programs (that we currently offer for free for everyone in the type 1 community) such as our Snail Mail Club, the App, Education Initiatives and Resources, Camp Sessions, and the DKA Awareness Initiative we will be rolling out nationwide in just a few weeks.

We have also given grants to organizations working on cure efforts such as ViaCyte and the DRI, technology efforts such as Nightscout and Tidepool, and community /education /advocacy efforts like The Human Trial Film, Riding on Insulin, Marjorie’s Fund, and T1 International. The grant we gave to Marjorie’s Fund last year actually helped open a new diabetes education center in Uganda this summer! (To learn more about all of the grantees, etc. you can visit this page on the website.) We like to fundraise for a variety of things across the areas of educate, advocate and cure — we want to help people living with T1D today while still researching and working towards a cure for tomorrow.

If we won the Revlon Challenge, the extra money would be used not only to help fund our native programs and keep those going, but would also enabled us to open up applications for grants once again.

The Revlon Challenge also has some cool opportunities and bonus challenges they do throughout (such as matching donations, etc.) and we also have done some fun things like offering a Percy the Plushy Snail (our Snail Mail Club Mascot who is not for sale yet but is pretty much the cutest thing ever – he has an insulin pump!) for everyone who donates $50 to Percy’s fundraising page. And of course right now are doing the Nick Jonas meet and greet giveaway – so people have some cool opportunities to win extra stuff!

Thanks for all of the information, Mary!  Now I have a better idea of where our donation is going when we chip in for the Million Dollar Challenge.  Here’s hoping Beyond Type 1 is able to win the challenge and bring diabetes into mainstream discussion.

THE CONTEST ENDS OCTOBER 26th, SO IF YOU’RE GOING TO GET INVOLVED, NOW IS THE TIME!  🙂

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