In a perfect (diabetes) world, every menu would come with a nutritional breakdown, all handy and listed right there for carb-count, insulin ratio mathification.
That is all.
In a perfect (diabetes) world, every menu would come with a nutritional breakdown, all handy and listed right there for carb-count, insulin ratio mathification.
"The JDRF is on The Pitch. It's after Mad Men. You watch Mad Men, right?"
This is the paraphrased version of several texts I received on Sunday night from friends and family, alerting me to the fact that the JDRF was the featured "client to win" on AMC's The Pitch. (Removed is the part of the discussion where I admit to not watching Mad Men and am flogged repeatedly by 160 text characters.) Two ad agencies, Bozell and Muse, were hot to earn the JDRF as a client, and while the focus of the show was the preparation for the pitch, it was really cool to see type 1 diabetes folded into the storyline. I'd never tuned in to The Pitch before, but I was glad I caught this episode. (You can download it from iTunes.) There were a few things that leaped out at me as notable; here we go:
National Exposure. Type 1 diabetes doesn't often find itself receiving national television exposure. And I was proud to see the CEO of the JDRF, Jeffrey Brewer, giving the rundown on why type 1 diabetes deserves the attention of the nation. This show helped the diabetes community, and our message, reach outside of the bubble.
TOD. Tod? Aka "Type One Diabetes?" With Bozell pitching "TOD" as a character for the nation to rally against and hate, I was more than a little eh on this. I'm not best friends with my diabetes, but I don't want to foster any additional rage or hate for it. For me, that would lead to resentment, and it's already earned too much of that from me after twenty-five years. I don't want to wear a t-shirt that says "I (Don't") Heart TOD." Diabetes is a disease. I don't want it personified, because then I'd want to hunt Tod down and punch him in the face.
"One Less Prick." This tagline, constructed by Muse, is sassy. But immediately makes me think of a wiener or someone I can't stand to be around. (Or maybe both.) Which isn't the perception I want society having of my disease. I know I like to laugh at the fact that the pancreas is shaped like a wiener. I also make really terrible jokes with my friends about this disease. But when it comes to public perception of type 1 diabetes, I don't want double entendres and snickers (not that kind) dominating discussion. Diabetes is a disease, and one that needs funding for research and a cure. I think "One Less Prick" is a powerful message, but I didn't feel it was one that would change, or inspire, public perception. However, if it was a campaign aimed at people already familiar with diabetes, I think it would have been a clever one.
Be the Voice of 1. Okay, so (SPOILER) this was part of the winning pitch from Bozell. Their campaign, Be the Voice of 1, has a website culling Tweets hosting certain keywords (seems like "JDRF" and "T1D" will earn you a spot on their "wall), encourages people to text a donation (yay!) to JDRF, and includes a video showing how T1D affects so many different demographics.
"It was bigger than a campaign for JDRF; it was a campaign for type 1 diabetes," said Jeffrey Brewer. Personally, I don't think it was a bad start, regardless of who they chose, because the campaign already scored legs by being introduced on a television show. What happens next remains to be seen, though. It's hard for me to see the forest for the trees in this kind of situation, because I'm already intimately familiar with type 1 diabetes. Would this campaign grab me if I was Polly Workin'-Panc, strolling by a subway stop in NYC? Would I stop and look twice if I made my own insulin? What makes a media message about diabetes stand out to people who aren't intrinsically tuned in?
Media campaigns can only take a message so far. It's up to our community, and our supporters, to follow through on these messages with as much advocacy, fundraising, and passion as we can muster. I'm only the voice of my own type 1 diabetes, but if we all raise our voices together, we can really make a difference. I hope to see this campaign raise some real awareness.
Memorial Day is behind us, so that means summertime has officially begun. Bring on the white pants, white shoes, Will Smith song references, and ... diabetes devices? YES! Abby talks about being an adult, sporting diabetes devices, and dressing for summa. I mean, summer.
Here in Vermont, it's beginning to look a lot like summertime. Temperatures are hovering in the 70s, occasional 80s, with the occasional crazy 20 minute afternoon thunderstorm thrown in. I love summer in the Northeast. I like that the temperature is perfect between 5 - 7pm, and now that I'm working grown-up hours, I can sit in air conditioning during the hot,hot mid-day sun, but then get to go outside and enjoy the weather after work. (I love sleeping with my windows open to the sounds of crickets and random people driving into the condo parking lot.)
For the past four summers, I have been at Clara Barton Camp. Basically from June to the end of August, I was surrounded by diabetes. This also meant that my summer wardrobe does not have to be pump-friendly or "professional." Most of my summer attire, since 2008, has consisted of gym shorts and t-shirts. (This is an ultra-friendly pump hiding combo. Clip it on the shorts waist band. Clip it on your sports bra. Clip it on your shirt collar, clip it on your sneakers, wear it in a child-size pump pack outside of your shirt or as a head band - all completely valid pump storage options at diabetes camp.)
But I'm not at diabetes camp this summer. I'm a grown up now, with a grown up job. Which is making my summer wardrobe in need of an upgrade.
Today I wore shorts outside to read on a bench in the sun. My pump site was showing on my thigh. I didn't even think twice about it, until I stood up and realized my neighbor was on his porch and probably saw the little pink sticker stuck to my leg (he's a doctor, so for some reason this eased my mind a bit).
A lot of us blog about diabetes and fashion. The amount of tricks we have to hide our d-gear (especially girls) is endless. I'm fine with hiding it, and I'm also fine with showing it off, but I'm generally a hider when it comes to my pump. You will rarely find a picture of me and be able to spot my pump unless I'm surrounded by d-people, and even then it'll be a glimpse of tubing here or there. I'm not ashamed; I just feel more comfortable with it tucked close.
So this summer will be exciting. I will wear dresses, shorts, capris, tank tops (not all at the same time, and not at work of course - health care dress codes and all that) and if my pump shows, so be it. I probably won't be wearing my tally-gear outside of my clothing in public ever, but I also won't be afraid to wear a sleeveless dress with an arm pump site.
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Rock the arm site, Abby. Sometimes you just need to rotate the real estate options, you know?
In keeping with the theme from last week ...
I like to bake. It's the only culinary task I have any prowess in, and Birdy often requests "Cupcakes, mama?" by opening up the cupboard with all the baking pans in it. (She's aware that they're the only pans I know how to use.)
But I hate baking, mainly because I don't ever taste the results and I'm challenged by the excess of cream cheese frosting in my house that I avoid, in a roundabout way, like Billy from Family Circus as he plods through the neighborhood, trailed by dotted lines. (I did not like Billy. Kid never took a direct flight in his life, I'd imagine.) But I do love baking with my daughter, and watching her eat her cupcakes with a fork never fails to make me smile.
Which is why I'm secretly thankful for the teeny cupcake pan. About one-third the size of regular cupcakes, the teeny cupcakes are just wee enough to provide a bite without packing a punch. Birdy can gobble one up without making me feel guilty, and if I cave and eat one, the blood sugar backlash is minimal.
Teeny cupcakes rule.
(And no, I haven't figured out how to fill the cupcake tins without having those weird, toasted connector stripes. I'm messy.)
During a few of the presentations I've given, I've told The Cupcake Story, which happened when I was around 9 years old. But I've never blogged The Cupcake Story (TCS?). (Mostly because the title itself has too many capital letters and it's exhausting to keep hitting the damn shift key. Or maybe because I still feel guilty about it ... I think it's the guilt.) I've finally come clean about TCS ... only I'm hiding it over on Animas.
“What is your blood sugar, Kerri?”
I didn’t want to look at her, because I knew she’d be mad. She wasn’t asking because she wanted to know, but because she already knew.
“Muhmm meigh meh,” I replied, keeping my eyes down in defiance.
“Say again, please?” I didn’t need to look at her to know that her hands were on her hips and her eyes were sharp with daggers.
“Two eighty five.”
The rest of TCS is on Life, Uninterrupted ... but I'm leaving the cupcake photo here. ;)
While I was away last week, the first flight, from Providence to Chicago, was very turbulent and bumpy, so my blood sugar did some tumbles while my anxiety levels were up around 37,000 feet. My Dexcom graph showed me heading back into range after landing, but by the time I boarded my connection flight, it was starting to rise a little bit again. I needed to spot check and see where things were at.
Since my row was filled in already and everyone was buckled in, and the plane was still being boarded, I reached into my bag to retrieve my meter for a quick check. I was a little oblivious, with Spotify (Beastie Boys, Ch-Check It Out) streaming in through my headphones, so I wasn't much paying attention to my fellow passengers until I felt the eyes of the teenage girl across the aisle, staring at me.
On diabetes auto-pilot, I slid the test strip into the top of my meter and pulled an earbud out of my ear so I could hear her better.
"Your iPod is really cool."
"What's that?" I said, deftly lancing my fingertip out of sight.
"Your iPod? I really like your iPod. I've never seen one with an antennae like that and ... WHAT ARE YOU DOING TO YOUR IPOD?" Her eyebrows shot up into her hairline and her mouth made this horrified little O as I brought the blood drop up to the test strip, stuck into what she thought was the source of my tunes.
"Oh, it's not an iPod! It's a glucose meter. I'm sorry!"
She laughed. "For diabetes? Got it. Not for iTunes. I'm sorry I freaked out." She gave me a rueful grin. "Carry on."
Dearest Birdzonoius Maximus,
You used to go to sleep when I put you in your crib at night. You'd stick your thumb in your mouth, wrap your hands up in your blanket (which you've named "bim" and you drag around with you everywhere), and wave goodnight. But now, at the ripe old age of 25 months, you've started to bargain. And discuss.
"Hungry?" You say thoughtfully, putting your finger to your lips in deep thought, then, "How 'bout … Elmo crackers?"
"No Elmo crackers, Birdy. Time for bed."
"No bed!" Again with the finger to the lip. "How 'bout … um, rainbow song?"
At which point I climb into your crib, wrap you up in my arms, and we sing Somewhere Over the Rainbow together. And somehow, bed time ends up being delayed. Clever bird.
Life is going by very quickly, my little friend, but you are picking up bits of knowledge every day. You have a very thorough understanding of what constitutes as "mommy's meh-cine," bringing me my Dexcom receiver when it beeps and watching me with a sidelong glance when I test my blood sugar. Sometimes even snacks are meh-cine, and there are moments when we both sit on the kitchen floor and chomp on fruit snacks - yours for fun and mine for necessity. When I reconnect my pump after I get out of the shower in the morning, you usually want to give it a kiss, like you somehow know it's important.
You also have adopted a certain plastic figurine as your new favorite item ... Larry Bird. Abby sent Larry to us a few months ago, and he's been a fixture in my office ever since. But somehow, he migrated upstairs, and you're smitten. Larry gets dragged everywhere - to the grocery store, to the playground, to your highchair, where you actively try to feed him spoonfuls of oatmeal. And sometimes you brush his teeth.
Watching you grow up and go from "baby" to "actual kid" has been an incredible journey (in which you are the cat and I'll be the lab and Daddy can be the terrier), and your discoveries bring me so much joy on a daily basis. You're fun to hang out with, Birdy, and I love getting to know your wild little personality.
"A, B, C, D, E, F, G," you sing loudly from your crib, far past when you should be asleep. "H, I, J ... louder? [As though someone asked.] Okay. A, B, C, D ..." and now you're at the top of your lungs.
You crack me up, kid.
After a few days of travel and a couple deadlines I met by the skin of my teeth (do teeth have skin? - what a gross thought), I feel like this:
Only not that sweet looking.
Today's D-Blog Week prompt: "Let’s end our week on a high note and blog about our “Diabetes Hero”. It can be anyone you’d like to recognize or admire, someone you know personally or not, someone with diabetes or maybe a Type 3. It might be a fabulous endo or CDE. It could be a d-celebrity or role-model. It could be another DOC member. It’s up to you – who is your Diabetes Hero??"
I remember being at Rhode Island Hospital, sitting in my room with Eddie, the boy who had been bitten by a spider. He and I compared notes on our injuries - "My leg is swollen from the bite of the spider," he said, gesturing to his leg in the traction. "I have diabetes," I replied, not knowing what that meant or what it should look like.
And then we went home. And my brother and sister were waiting. My family, all of my aunts and uncles and cousins, and my friends and my classmates, they were all the same. The only thing different was this low-hanging, cumulonimbus cloud of type 1 diabetes that we didn't fully understand or fear or hate or embrace, but we knew it caused emotions to rain down, at times.
I do remember climbing trees. And playing in the backyard with my brother and sister. I remember building blanket forts with my friends and going to sleep-overs. I remember family trips to Disney World. I remember going to the beach and school dances and having a crush on a boy named Mike when I was in fifth grade. I remember riding my bike and scraping my knee. I remember our pet cat, Dippy. I remember tap dance classes and building little garden homes for worms in the backyard. I remember feeling just like everyone else almost all of the time. Diabetes did not own any part of my childhood.
There are lots of people who have helped me get "here," to this place where diabetes doesn't define me but just explains some of me. But none more than my mother. She has paved this road of life with diabetes to be simply life. And there aren't enough words in the world to thank her enough.
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(Also, am I the only one who hears the word "hero" and immediately thinks of Varsity Blues?)
Today's D-Blog Week prompt: "Back for the third year, let’s show everyone what life with diabetes looks like! With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures. Post as many or as few as you’d like. Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves."
Diabetes looks a lot like this:
Infusion sets ripped off and discarded on the shower shelf;
Insulin bottles and diabetes paraphernalia on the bathroom counter;
But despite all the hardware and numbers and diabetes devices and hardware, PWD also come with a lot of heart.
Abby's take on the "What They Should Know" D-Blog Week prompt.
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If I had to tell someone who doesn’t have diabetes one thing about living with diabetes it would be this:
I joke around about diabetes most of the time. I make fun of it. I regularly reference Wilford Brimley. These are the times I’m not struggling with my diabetes. When I’m voicing how I feel, and joking about my dead pancreas, this is not the time to worry.
When I test my blood sugar, put the meter back in my purse, and then sit for a moment silently – that’s when I’m not ok. I probably just saw a number on that screen that defeated me morally and physically. I probably don’t want to talk about it. There is nothing you can do at this moment but appreciate that you don’t have to deal with it, and I’m doing the very best job that I can.
Diabetes is an extremely physical disease (see the giant bruise on my hip from a wonky CGM site) but it is also an emotional disease.
Frankly, you will never understand and I will never expect you to. All I want you to do is laugh at my jokes that aren’t funny and don’t make fun of my Sesame Street juice boxes in the pantry, and don’t judge me when I eat peanut butter on fruit snacks because my blood sugar is 43 mg/dL and it’s the most delicious thing in the world to me at that moment.
I guess what I’m saying is that diabetes consumes my life. It is always there. My reactions to each aspect of it will not make sense to me or you, and I don’t want you to put any effort into trying to understand it. If you are going to be my friend, then all I need from you is to be my friend.
Abby, the part about "don't worry if I'm making jokes," totally resonated for me. When I'm silent is when I'm the most vulnerable, not when I'm vocal about it. I loved this post.
Today's D-Blog Prompt: "Let’s borrow a topic from a #dsma chat held last September. The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”. Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything."
I originally wrote this post for D-Blog Day last September, but when I was trying to come up with something for today's prompt, I kept coming back to my original sentiments. Still rings true for me today, so I'm going with it:
Here are my six things that I wish society knew about diabetes:
There is more than one kind of diabetes. This isn't a knock on my type 2 and gestational diabetes friends, but definitely a knock on society's perceptions at large. People have one musty, old perception of what diabetes looks like, and it's always someone older, heavier, and lazy. Wouldn't they be surprised to meet our fit type 2 friends, or the 20 year old gestational diabetic? Or a "juvenile diabetic" who isn't eight years old? Diabetes doesn't have "a look." This disease does not discriminate.
Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows. But I'm not the only one affected by diabetes. My parents had to care for me when I was young, acting as my pancreas. My friends have been affected by my lows and highs while we're hanging out, sometimes forced to jump the bar and accost the bartender for orange juice. (True story.) And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don't feel alone. Diabetes isn't just mine. It belongs to everyone who cares about me.
Diabetes isn't just a physiological disease. It's an emotional one, too. It's not just a question of blood sugar levels and insulin supplementation. It's about managing the emotions that come as part of life with a chronic illness. It's about the guilt of complications. The pressure to control an uncontrollable disease. The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level. Maybe more so, because life needs to be happy, whether it's a short life or a very long one.
Diabetes isn't easy. We just make it look that way sometimes. Some of the perceptions that the general public has is that diabetes is easy to handle. "You just wear the pump, test your blood sugar, and watch your diet and you'll be fine, right?" Wrong. You can do the exact same thing every day and still see varying diabetes outcomes. It's never all figured out. Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn't.
No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects. There's no winning combination and no "right" way to deal with this disease. Being on a pump means you use a pump to infuse your insulin - this doesn't necessarily mean you are taking better care of yourself than the person who opts for injections. Low-carb doesn't work for everyone, and neither do certain medications. Your diabetes may vary (thanks, Bennet), and what works for you may not work for everyone. It's important to remember that this disease doesn't have a predictable path, so there are plenty of "right' ways to handle it.
Just because we don't look sick doesn't mean we don't deserve a cure. That statement sums it up for me. We might make it look easy, but it isn't. There's no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling. And their effects are devastating. Diabetes, of all kinds, deserves a cure. No one asked for any of this. We deserve better than society thinking that diabetes isn't worth their attention. We deserve a cure.
Today's D-Blog Prompt: "Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary. Tell us what your Fantasy Diabetes Device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?"
What do I really want? A CGM that's smaller? A meter that's more accurate? Insulin that's faster and glucose-responsive? A lancing device that's pain-free? Cupcakes that lower my blood sugar with every bite? One, single frigging cord I can use for uploading various diabetes data points? A fountain of Diet Pepsi in my backyard that's sponsored by Ponce de Leon? A sparrow that checks my blood sugar with a whisper-kiss?
Today, I want a cure for this disease. A real-deal cure. One that removes the necessity for all of the above-listed fantasies.
Sky's the limit, right?
Abby shoots from the hip (groan - terrible pun) this morning for D-Blog Week's "Fantasy Diabetes Device" prompt:
So, here at SUM we don't use bullets ever (have you noticed I hate sarcasm?) so I thought I'd bang this one out (bang ... bullets ... see what I did there?) with a nice little list. This is what I"d like in a meter. I chose a meter because I really love my pump and have no requests to change it. My meter options, however, need improvement.
So - I'll keep choosing between these options because every meter has it's positives. I just want one that has all the good features. I'm sick of the company competition. Learn from each other people! (And add glitter!)
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Abby's take on D-Blog Day No. 3!
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Diabetes is really difficult. I mean like, wicked hard. I do the best I can – we all do the best we can – but there are just sometimes when we can’t. So choosing something I don’t really do well is emotional and really frustrating to admit … mostly to myself.
I am not good at taking ownership of when I mess up my diabetes. I am the queen of the blame game. When my blood sugar is high, I immediately think of any reason other than, “Hmm, well maybe I just didn’t carb count that right." Nope - the things I think are along the lines of: my pump is broken, my insulin is bad, someone injected corn syrup into my coffee, I’m sick, my meter is broken, or my pancreas is extra-broken today. This also goes for low blood sugars. If I see a low that I’m not expecting (let’s be honest; we can predict some of them) I think “OH CRAP MY PUMP PUSHED TOO MUCH INSULIN INTO ME I’M GOING TO DIE” or that I’m sick or my meter is broken or my pancreas turned back on.
This is ridiculous, and I’ve started to take ownership with little things like buying a food scale and eating similar foods every day. I test more regularly and wear my Dexcom all the time. I’ve also taken some more ownership of my actions – I consider exercise a medication and I try to do it as often as I tell my patients (I have my fair share of excuses and use them regularly, but I’m trying). I also don’t go out to eat hardly ever because restaurant foods are just the worst on my blood sugar (and my weight). I say no to drinks after work because my health is important to me.
I still have a long way to go, I am planning a BBQ this weekend for a birthday party and I will eat whatever I want and carb guess and make excuses for the blood sugar after. But I’m trying.
All I can do is try.
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Today's D-Blog Prompt: "Yesterday we gave ourselves and our loved ones a big pat on the back for one thing we are great at. Today let’s look at the flip-side. We probably all have one thing we could try to do better. Why not make today the day we start working on it. No judgments, no scolding, just sharing one small thing we can improve so the DOC can cheer us on!"
Argh ... pick just one thing? Diabetes makes us too self-deprecating, with all of the variables we "supposedly" have control over, and now I need to nail down just one little ol' thing to improve?
What needs to be worked on ebbs and flows in accordance with whatever my goals are at that time in my life. Prior to becoming pregnant, I was all about fine-tuning my diabetes to nail down a solid and safe A1C for conception. During pregnancy, I was a bonafide stalker and stalked the shit out of my blood sugars.
But now, what I'm aiming to do is make the most of the tools I have available to me. Namely the magical diabetes math machine that is my insulin pump.
I wear an Animas Ping, and that little sucker comes with a lot of bells and whistles (hello, waterproof and can be worn in a swim-up bar in the Dominican Republic), but the main thing I need to use with more precision is the bolus calculator. I have my insulin:carb ratios stored in my insulin pump, so my pump knows I need one unit of insulin to cover 11 grams of carbs. My pump also knows that one unit of insulin brings me down about 55 mg/dL. And it also knows how much insulin I have on board, it's good about keeping me from rage bolusing if I have that HULK SMASH desire to stack boluses when a high blood sugar is being super stubborn.
But all of this information goes pfffffft if I don't actually make use of the bolus calculator tool.
I have a baaaaaad habit of using my brain to calculate meal boluses/correction doses, which is foolish because math is not my strong suit and my brain is mostly clogged with other, far less useful, stuff. I have this device literally at my hip, and it's capable of doing so much of the thinking for me. So why am I using this ... this fluffy gray matter between my ears? Why am I not using this silver gizmo at my hip?
That's my one (of many) thing(s) to improve, and I'm going to try and start making that change today: I'm going to let my insulin pump "do the math." Because God knows I could use the freaking help. ;)
Today's D-Blog Week prompt: "Living with diabetes (or caring for someone who lives with it) sure does take a lot of work, and it’s easy to be hard on ourselves if we aren’t “perfect”. But today it’s time to give ourselves some much deserved credit. Tell us about just one diabetes thing you (or your loved one) does spectacularly! Fasting blood sugar checks, oral meds sorted and ready, something always on hand to treat a low, or anything that you do for diabetes. Nothing is too big or too small to celebrate doing well!"
I'm reluctant to say I do anything related to diabetes with any kind of finesse, because as soon as I even think I have something figured out, my body rebels or the tides shift or carbs magically appear in the air and they absorb through my pores like a bioterrorism attack on my A1C and then the whole thing goes to shit ... hang on, that's a wicked digression. Let me start over:
I don't have anything figured out, in full.
Except that concept of "keep swimming."
Birdy's new favorite character is Nemo from Disney's Finding Nemo. (Which is a favorite cartoon movie of mine, and I remember seeing it in the theater with a guy I was dating, the two of us sitting amongst a pile of parents and kids. Slightly awkward.) She hasn't seen the movie in full, but she's caught a few scenes here and there, and she thinks Nemo is "So cute, my Mama!" (Calling me "my mama" is also a new thing, as of this morning.)
And in that movie, there's the bit with Dory - beloved blue fish devoid of short term memory, who should get a Polaroid camera like the guy from Memento - where she encourages her friends to "just keep swimming" when things get challenging.
That's the one thing I think I'm good at, when it comes to diabetes. Regardless of how hard or easy it is on any given day, I'm good at pushing forward. Moments of extreme blood sugar happiness? Pockets of diabetes burnout? Tired of devices? Wishing for better math skills? Celebrating that moment when you wake up in the morning and see the nice, flat line on your Dexcom and the shiny 100 mg/dL on your meter, but nervous that it's fleeting? Trying to fine-tune insulin:carb ratios? Negotiating insurance coverage issues? Working to financially maintain an expensive and chronic condition? Trying to keep emotions in check?
Keep going, keep trying, don't give up.
Diabetes seems to be all about moving forward, in pursuit of good health, even when there are moments that trip us up a bit.
Just. Keep. Swimming.
It's hard to pinpoint one thing I do well with diabetes. Let's face it - I do everything well. Diabetes is so easy for me. I'm constantly 104 mg/dL. My blood sugar never strays from 80-120 ... ever.
Long story short, I live my life, I survive, I have fun, and I do the best I can with my diabetes. Most days are unremarkable, I check my blood sugar 6-8 times daily, I change my pump site every 3-4 days, I bolus for pretty much everything I eat. I just live, and diabetes tags along.
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Yup, you definitely have sarcasm nailed. In addition to making us grin.
Today's D-Blog Week Prompt: "It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today!"
When I started blogging, I could count my diabetes blogger counterparts on one hand. Now, over seven years later, there are more diabetes blogs and diabetes social media resources than I can count, nevermind keep track of. So many people telling their individual stories ... it's amazing. There's truly something out there for everyone to identify with.
I've highlighted some of these bloggers in the past, but wanted to give them an extra nod for today's D-Blog Week post, because this week, I'm keeping it Rhody-local with some of my favorite Rhode island diabetes bloggers:
Bigfoot Child Has Diabetes: Written in a style that's in homage to Graham Roumieu, Bigfoot has a child with diabetes who was recently diagnosed. Her writing is funny, poignant, and whenever she mentions some of my favorite Rhode Island spots, I want to hug her.
The Diabetic Cyclist: Ryan and I actually went to school together (he's a few years younger than me, and his wonderful older brother was a classmate of mine), and I remember meeting him just after I was diagnosed. Decades went by before we reconnected, and it was after he had been through some tough times with diabetes. Now he's making changes for the better and has a story that inspires the hell out of me.
Tales of Swagging: Even though Ashley isn't currently living in Rhode Island, she's all Rhody at heart. From our shared love for Bess Eaton coffee and synthetic insulin, her blog is about her diagnosis at the age of 25 and her ambitions of becoming a healthcare professional.
Nicole on Blogabetes: Nicole was one of the very first PWDs I met, in person, after starting my diabetes blog, and she's remained a friend and an inspiration over the last seven years. She currently writes, beautifully, at dLife's Blogabetes meta-blog, and her words are never short of inspirational.
There you have it. Some of my favorite diabetes bloggers, hailing from the land of coffee milk, Del's, and lovely beaches. Rhody pride!
From Abby - her take on the first day of Diabetes Blog Week (my entry is coming up later this afternoon :) ): Wow, that's of a lot of punctuation there. Incorporating a smiley face within a parenthesis is complicated.
I'm kind of cheating today. (Ok, so I'll probably cheat on a lot of these topics; I'm a nurse not a writer :).) I don't read any blogs that the rest of you don't read. I have a blog reader thing on my phone and I catch up every week or so. There is my confession.
That being said, I have some other diabetes resources that are disguised as plain old internet fun and I'd like to share them with you.
First is Pinterest. If you haven't joined the Pinterest world yet, you are seriously missing out. You can create these crazy "pin-boards" and categorize them as you wish. For example I have one called "OMGShoes" and its just pictures of shoes I like. It's literally that simple. I also have a board titled "Diabeetus" and here I put recipes I want to try or pictures of food that looks just plain delicious. Admittedly I've only tried two of these recipes (big life changes this past year, but now I have my own beautiful kitchen and a real job so I'll be trying more) but the ones I found were healthy, delicious, and easy on the blood sugar. I'm a terrible cook. I can make anything taste like cardboard. The more I try to make things taste good, the less they taste like anything - it's almost comical. But finding recipes online that people have tried, or made up on their own, and made with healthy ingredients? I'll try that any day.
The second resource that is completely disguised as fun but actually has diabetes benefits is Instagram (it's a smartphone app). It has recently been released for Droid (finally!) and I'm hooked. I have a lot of followers, and follow a lot of people with diabetes. We post ridiculous pictures of things like cats and flowers, but there is also a lot of support surrounding pictures of CGM graphs (both awesome and mountainous) and blood sugars on meters - even the occasional picture of a vampire cannula will get quite a few likes. There is no point to this means of social networking, except it's nice to know that people out there see my struggles and successes disguised as artsy photos.
So, this is not a "meet my blog friend" post, because I am not good at that. You all already know all the blogs I read, or you will by following the D-Blog Week participants. But it's always fun to hear of social media sources being used in a diabetes-friendly way.
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To catch more from the folks who are participating in D-Blog Week, check out the topic and link lists here!
I'm not sure what all the "rules" are when it comes to diabetes devices, but when it's about me making decisions for where to put my stuff, I do whatever works for me. As far as I'm concerned, if I can pinch up the area and it's not covered in scar tissue, it's fair game.
For a long time, I used my abdomen for infusion sets. During pump training at the Joslin Clinic, that's where they said to put it, so that's what I did. Only I hated it. I don't hate much about the diabetes day-to-day, but I hate abdomen sites. I don't like when the waistband of my pants shifts against it. I hate that I can sometimes feel the insulin going into my skin (grosses me out). And since having my little Bird, I don't like when her feet kick against the site as I'm holding her, because it hurts and makes me squirmy as hell. (There is the whole "second belly button" issue, as well, because when I wear my site on my abdomen, it looks like a second navel [academy?] underneath my shirt. Not my favorite look.)
But the absorption is always good. Predictable. Even though it's my least favorite spot, it's a fail-safe for infusion set productivity.
When I gave up on abdomen sites, I switched to my thighs. This worked great for me, but once I started on the Dexcom back in 2006, I preferred saving my legs for the larger, more intrusive, changed-less-often sensors. (It's just awkward, because even if I don't have the sensor on my leg, I take my pants off with this exaggerated motion, arcing my clothes out from where the sensor would be. It looks like I'm pantomiming a lady from the 1930's, putting on bloomers.)
Which left me with the back of my hips and my arms. The back of my hips works great, so long as it's well-above the waistline of my pants, and absorption is great, and I make sure to rotate regularly and comfortably. My arms also work well for me (even though I get more reddish sites and little bumps after removing the infusion set), and gives me two areas of good absorption. The only real problem with arm sites is that I snuggle Birdy all the time, and she always manages to grab me right at the site. She's picked off more than a few.
But, as with any site, it needs a rest. Which is why, after a string of gross high blood sugar days, and then some aggressive lows, not to mention a vampire cannula, I needed to switch up my sites for a few days. I needed to give the back of my hips a rest. I went back to the old standby: frigging belly sites.
I'm hoping that this is what I needed to bring things back under control this week, because I was the Mayor of Crazytown for a while there. If it takes going back to abdomen sites on occasion to keep things in range, I'm all in.
... I actually think I'd stick one to my forehead to get 105 mg/dL's all day long.
(That means bullets, no?)
Pump spottings in the wild are some of my favorite moments. This post was originally published back in February of 2011, but I still stalk pump people these days. ;)
A few weeks ago, Chris and BSparl and I went out to dinner. Dining out with our little bird is a bit of a tangled experience, and we don't spend as much time people watching as we used to because we're very preoccupied with the baby wrangling.
That night, though, we were sitting and settled and throwing gluten-free puffs (yes, all of us) around the dinner table like confetti when I saw this woman walk in with her family. She settled her family in at the table, and then reached to remove her coat, revealing a beeper clipped to her pocket.
Only it was one of them fancypants beepers with the tubes and the buttons and the accompanying not-making-insulin pancreas. Reckon it was an insulin pump.
Immediately, I wanted to swing mine over my head like a lasso and say "OMG lady, me too!!!" I've had this feeling before, of wanting to sidle up next to someone and say, "I like your pump; want to see my pump?" but to me that sounds more like an awkward attempt to flirt instead of a moment of diabetes bonding. Living in a very comfortable bubble of diabetes advocacy makes me think that everyone who has a visible "symptom" of diabetes wants to talk about it. I have to remind myself that some people just plain don't want to talk about it.
But since I still wanted to say something, I targeted Chris instead.
"Dude, 12 o'clock. Actually, my 12 o'clock, your six o'clock. Minimed pump on that lady." I said to Chris without moving my lips, as if a pump sighting was a covert Navy Seals operation.
"Six o'clock? Okay, do you guys know one another? And why are you whispering?" he whispered back.
(I love that because she and I both wear pumps, we must know one another. I've brought him right into this bubble with me.)
"No, I don't know her. I have no idea who she is. But I just saw her pump." I paused, still whispering. "And I was like a toddler, wanting to wave my arms around and say 'Pump! Pump!'"
He laughed. The waitress came over to bring our food, and the two of us were immediately distracted by keeping BSparl's grabby little hands away from the hot plates. We had a nice dinner, and I sort of forgot about the fellow Navy Seal at the other table.
... Until we were leaving the restaurant, when I saw her glance at my hip (where my Animas Ping was tucked away), nudge her husband, and give a little nod.In my head, she whispered, "Dude, four o'clock. Animas Ping. Hooyah!"
After two days of elevated blood sugars, I figured the low would hit me like a sledgehammer.
Instead, it snuck up on me quietly and with stealth, like a bee who doesn't buzz to warn you of the sting.
What happened is this: I spent a good hour on the ellipmachine that night, frustrated by the blood sugar that refused to budge beneath 180 mg/dL for two days. I couldn't figure out the cause, and I was frustrated.
While I was working out (and catching up on episodes of Colbert [NATION!!!], including the one with the great performance by Jack White, who looks more like Edward Scissorhands with every public appearance), my feet felt heavy around the 30 minute mark, but a check of the Dexcom showed me at a steady 160 mg/dL and I didn't have any insulin on board.
Around the 50 minute mark, the sounds of the television show, playing through the speakers of my laptop, started to sound like they were funneled through a tin can. Even though only twenty minutes had passed since peeking at the Dexcom receiver, I knew I was tanking.
"Not again," I said out loud, and stepped off the ellipmachine mid-cycle, ready to see the double-down arrows on the Dex. (I'll admit to having an initial, "About time, jerkface," relieved to be dropping out of the stratosphere for the first time in two days.) But I was a little surprised to see "LOW - UNDER 55 mg/dL" beaming back at me, and when I clicked through to see the actual blood sugar value, I saw 49 mg/dL and the double-downs. I grabbed my meter off the bookshelf and did a quick check: 29 mg/dL.
Maybe masked by the adrenaline of exercise, or maybe by the rage of being high for so long, until I saw the number on the machine, the symptoms of the low were held back. But once that number flashed up, my whole body flooded with panic. I had a bottle of juice within reach, and I drained it in a matter of seconds.
"Be normal. You're normal. Be normal." I have no idea why this was the mantra going through my head, but it was this stabilizing force, keeping my knees from buckling. I eased myself down to the floor and sat there, my back to the bookcase, listening to Colbert's voice from the speakers above me.
What happened next plays back in my head like the scene in Clockwork Orange, where everything is in fast-forward and so tangled. I know I made attempts to drink an already-empty bottle of juice. I know I shut my laptop to silence the voices coming from it that were too loud, too fast, and jarring my bones. I remember half walking, half crawling up the stairs from the office into the kitchen, getting another bottle of juice from the fridge. I sat at the kitchen table for a few minutes, organizing a handful of Birdy's hair clips by color. I know I texted with Briley, but didn't remember doing it until I saw the messages a few hours later. Eventually, I was upstairs with Chris, explaining through confused tears and in one breath that I was low and I had juice but I felt confused and didn't know what to do next but I was 29, okay?
And within an hour, it was done. It's that strange voice of diabetes, where it's screaming in your ear one minute, nearly deafening, but then slides back into a whisper. I was back up to 130 mg/dL. Within a few more hours, the low hangover had passed, and I felt like a human being again.
And the beat goes on.
I first heard about Alyssa through the Johnson & Johnson YouTube channel, where I caught a video of this irish step-dancing 11 year old ... who had type 1 diabetes. I reached out to Alyssa, and her mom Jill, for a little mom-daughter perspective on being diagnosed with type 1 diabetes, and moving forward.
"My name is Kerri.
I could go through the hassle of establishing a nom de plume, but I wasn't thinking when I set this up and I signed in with my real name. Note to Potential Stalkers: Please don't.
The purpose of this is to make contact with other diabetics. It's one of those diseases (or maybe they're all this way, I'm not sure) where even if you have the mechanics of it completely mastered, the psychological battle is just as daunting. Every time I test my blood sugar, the result stirs me up emotionally. If I'm high, I feel guilty. Or surprised. Or angry. If I'm low, I feel anxious. And slightly panicky. Or confused. A normal reading level might make me feel cocky. Or successful. But they all make me feel something. And it's not just physiological. There is so much involved in the daily maintenance of diabetes that a support network isn't just nice, it's necessary.
Reach out. Ask questions. Answer the litany I'm sure to ask. Network network network. And when that doesn't work, just repeat repeat repeat."
Seven years ago, I felt alone with diabetes. But now, as I begin my eighth year of blogging, I don't feel alone at all. The Internet has opened up a world of support that I wish existed back when I was a kid, as it's had such a positive influence on my overall health. Your support empowers me to take better care of myself, and you guys are an integral part of my healthcare team. Just knowing you're out there makes a world of difference.
There's something really powerful about that. And something really awesome.
Thank you so, so much for reading over the last seven years!! I'm so proud to call you friends.
I don't generally get mad at diabetes. Unnerved by a really aggressive low blood sugar that hits in the middle of the night? Yes. Scared of how diabetes-related complications may affect my future? Absolutely. Inconvenienced by all the hardware people with type 1 diabetes are trotting around with in efforts to rein in this disease? Yessir.
But mad? I don't often get mad at it. I find that to be counter-intuitive. As much as I don't consider diabetes to be a defining quality of my personality, it's definitely part of the package, so being mad at it makes me feel like I'm fired up at myself. Not the healthiest mindset for me, anyway.
But holy shit, was I mad at it yesterday.
The day prior, I was on the road (technically, I was on the track, heading to NJ by train for a meeting), and my blood sugars were a steady bad dream. Not exactly a nightmare, but up in the 190 - 220 mg/dL range and just HOLDING there, regardless of my correction boluses, low-carb meals, and my gentle pleading. ("Can you just come down like 45 points, you jerkface?")
That whole afternoon, and evening, was spent watching the Dexcom graph holding this frustratingly steady line above 200 mg/dL. My numbers were impenetrable to boluses, injections, etc. I tried to blamed travel, or exhaustion. Whatever - I'd be fine in the morning, right? That night, I went to bed with a fair amount of insulin on board, the Dexcom in a glass by the bed, and my alarm set in anticipation of the low blood sugar I was sure was coming.
Only it never came. And I woke up at 221 mg/dL.
I spent the day at home yesterday, trying to bring my blood sugar down. Changed out the infusion set on my insulin pump. Swapped out the bottle of insulin I was using for a fresh bottle. Exercised on the stupid ellipmachine for an entire episode of Glee (don't judge - I wish I hated the show but I don't ... yet). Drank lots of water. Ate less-than-carby things like eggs and tea and green beans. Blah, blah, blah.
But I stayed high all freaking day. And for the first time in a really long time, I was mad. Being at an elevated number for over 24 hours had my head pounding and my legs feeling like they were saddled with brick-laid shoes. I didn't feel energetic. I had a hard time keeping up with the happy play schedule of my daughter. I didn't want to be chatty with my husband. I was pissed that this streak of highs was so hard to break, even though I was doing a lot of the "right" things. I was angry at diabetes for derailing two full days, without a break. Diabetes and I don't normally have a contentious relationship, but I could have put the whole mess through a meat grinder yesterday. (Or made it stick a fork in a plugged-in toaster ... not that I haven't thought about that for it before.)
I wanted to go upstairs, get into bed, and sleep until I was back in range because it was clear that my efforts to fix the numbers were falling flat.
Some days, I look at my blood sugars and I know why they're where they are. I know when exercise causes a low. I know when alcohol influences one, too. I know when I've miscalculated carbs by accident or eaten more than I originally bolused for. But there are days when I look at the numbers and just throw my hands in the air (waving them, like I just don't care) and say, "Screw it."
This morning, with the same infusion set and I:C ratios and basal rates and insulin as the day before, I woke up at 121 mg/dL. Much, much better. But how?
Diabetes, you are a fickle one.
Glucose meters have come a long way (especially since I was diagnosed, back when I used this old meter), all the way to now, when we can clip a glucose meter to our iPhones and test from the same device we check email and make phone calls from. (I had a chance to check out the iBG*Star meter yesterday down at Sanofi, and it's pretty cool. More on that later.)
Testing my blood sugar is a much more streamlined process now than it was twenty-five years ago. Thankfully ... because that old, ancient glucose meter was a workout unto itself. ;)
Last week, I was in London at the Pharma Times Digital Club meeting to talk about epatients and interactions with industry professionals (PR companies, pharma companies, etc). It was an interesting event, both in distance and dialog, and I am still wrapping my head around the patient/pharma interaction differences between Europe and the US.
As part of our presentation, John Pugh from Boehringer Ingelheim and I had an on-stage "interview" of sorts, where we talked about what inspires epatients to share their stories online, and the stake we claim in healthcare communications.
Patients share their stories for a dozen different reasons. Some are anonymously writing, hoping to let loose some of the emotional burden of life with a health condition or just to vent without repercussion. Others write with full disclosure, hoping to put a face to a disease that is otherwise veiled in misinformation and misunderstanding. So many are hoping to connect with a community of people who understand, truly understand, and who can help manage the psycho-social aspects of life as a person with a chronic illness.
I started blogging because I felt isolated with type 1 diabetes. And regardless of the opportunities I've been given/earned as a result of blogging, I continue for the same damn reason: community. And as I mentioned on Chris's Just Talking podcast, "Not all of us are trying to make big headlines. Some of us are just telling stories." It's in storytelling that we connect with one another.
What was interesting for me was speaking with John prior to the meeting, and hearing about how pharma (or, more accurately, how some people working within pharma) view patient bloggers. John is the Digital Director for BI, and we've connected through several conferences in the past few years, watching the evolution of patient voices online. During our discussions, the influence of and necessity for the patient voice to be heard across all healthcare silos came up over and over again.
"Patient blogs are immensely valuable for any pharma company who wishes to understand patient's needs better. Patient blogs can give us first-hand insight into the issues many patients face, and can also be the first place potential problems about a drug arise." John said. "They are also an important reminder that medicine is affecting people's lives. This involves emotional issues; it's not just about science and balance sheets. The key for me is to ensure we approach blogs responsibly, and see patients as valued partners, not as an additional opportunity to just promote medicines."
We spoke at length about how some companies in the diabetes space have really become engaged with their patient audience, citing my partnership with Animas as an example. "They trust me - despite the fact that I'm a 'blogger' - and our work together shows that relationships between customers [patients] and companies doesn't have to be contentious. It can be supportive and tuned-in, with integrity and full-disclosure paving that path. It also shows that real patient experiences are what resonate for real patients."
I know it's important for patients and caregivers to acknowledge the psycho-social aspects of a health condition, but knowing there are people within pharma organizations who view patients as important stakeholders in the discussions makes me feel hopeful that there's enough common ground to make a real difference in health outcomes, and not just bottom lines.
After all, we're all patients.
[Disclosure: Many thanks to BI, Animas, and the Pharma Times for their hospitality! Boehringer Ingelheim doesn't make (at least to my knowledge) any of the diabetes devices or drugs that I use. Animas does, however, and they were kind enough to provide my travel, lodging, and an honorarium for appearing at the meeting. My full sponsorship agreement with Animas is outlined here. Also, it rained a ton while I was in the UK. That's unrelated to this disclosure, but still worth mentioning.]