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World Diabetes Day 2016.

It’s World Diabetes Day.  And how do I feel, after 30 years with type 1 diabetes under my belt (and above my belt and in every organ and all over my face)?

LUCKY.  Effing lucky.  Because according to the demands of my body, I should not be here, but because of science and access, I am alive.

I clicked on the Google homepage today and saw that, finally, after years of asking and hoping to see Google acknowledge the diabetes community through a Google doodle, our community was highlighted on the homepage.  There we were, represented in retro fashion, alerting the world that people with diabetes would be absolutely sunk without the contributions of Dr. Frederick Banting almost 100 years ago.

If I had been diagnosed before Banting and his crew changed the diabetes world, I would have died, my body starving to death as a result of not making insulin.  Insulin is crucial to my survival.  Seeing 90 days worth of insulin collected in my kitchen is pretty damn humbling.  What keeps me alive is stored next to the butter in my fridge, and that’s beyond humbling.

I do not take this life for granted.  

Today, on World Diabetes Day, more people are paying attention.  Even this whole month, with the focus on diabetes, people are tuning in and listening. We have their ear.  So grab them by that ear and remind them that diabetes month is November, and diabetes day is today, but diabetes is EVERY DAY for people touched by it.  We’ll still be stashing our butter compartments with insulin in December, and every December after that.

How can people help, way past today and this month?

I’m glad you asked.

People can donate to the International Diabetes Federation’s Life for a Child program.  They can also gear up for the Spare a Rose campaign, which takes place every February.  If your butter compartment is stashed with insulin, consider those who don’t have access and please help.  You can donate directly by clicking here.

They can also explore some of the diabetes advocacy organizations, like the JDRF or American Diabetes Association, or some of the more grassroots groups like Children with Diabetes, the Diabetes Hands Foundation, Riding on Insulinthe Betes Organization, Nightscout Foundation, Diabetes SistersDPACConnecT1D, the Diabetes Community Advocacy Foundation, DOColors, or Glu.  Or any of the other ones I haven’t listed, because there are many.

Participate in the Big Blue Test, or the World Diabetes Day 24 hour chat (#WDDchat16).  Or share their stories through the JDRF, ADA, or IDF campaigns.  You can do that RIGHT THIS SECOND.

If healthcare professionals are checking in on this post, please consider recommending the diabetes online community as a resource for your patients.  AADE President Hope Warshaw has created a one-sheet to help HCPs jump into the space, and there’s always the #DSMA chats that take place on Wednesday nights at 9 pm eastern.  Peer-to-peer connections can make all the difference for your patience.  Please encourage exploring the DOC as an option for your patients.

And give.  Give financially to organizations that lift the message you want lifted.  Give your time to efforts that improve the diabetes experience.  Give your story life outside of the diabetes bubble and give the gift of education and information to people who aren’t familiar with diabetes.

Happy World Diabetes Day, you guys.  Continue to educate, to change the game, to disrupt, to make a difference.  Continue being you, making crummy use of insulin but making an enormous difference for people with diabetes.  <3

 

#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

Diabetes Month: Ask Me About My Diabetes.

At 4 am, when I woke up to hang out with my little apple jack to feed him, my blood sugar was 108 mg/dL.  He ate and we both went back to bed.  When I woke up at 6.30 am, my blood sugar was somehow 221 mg/dL.

What the hell happened?!  Usually, breastfeeding makes my blood sugar drop, not rise.  Was there cortisol on board due to not sleeping?  Does my morning basal rate need to be tweaked again, now that I’m 10 weeks postpartum?  Did the potato salad go bad and exact revenge on me?  If two carbs left the station at 4 am, one going into my mouth and the other going into the baby, would they arrive on my meter at the same time?  Bonus point if you show your work.

Diabetes is the ultimate math problem.

This diabetes month, I want to make an effort to “show my work” so that folks both in and outside of the diabetes circle have a better sense of what it’s like to live day-to-day with diabetes.  Which brings me to this:

After posting this image as my Facebook profile picture, hoping people would ask questions about diabetes, my friend Chris Snider (<– always advocating, always inspiring) connected with me and after some quick back and forth, #amadiabetes came to be.

The hashtag stands for “ask me anything” about diabetes and in the spirit of spreading awareness and empathy, we’re encouraging our friends, family, and followers both with and without diabetes to ask whatever questions they have about the life with diabetes experience. The goal is to strengthen our community, educate others, and contribute to a culture of empathy. Check out #AMAdiabetes to see the variety of responses to questions, taking note that, as always, your diabetes may vary.

So feel free to ask away.  Ask me.  Ask Chris.  Ask others.  Ask yourself.  Be all ask-a-rama all over the place and let’s learn from one another and educate together.

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!
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