The Why.

“He’s just not been taking care of himself.”

I’ve heard this at least a thousand times, whether from a friend of a person with diabetes or like a few weeks ago, from a parent of a teenager with T1. They complain about how he just doesn’t care and he’s going to suffer the consequences if he’s not careful and that he’s on a dangerous path and they just don’t know how to help him. And these people are almost always coming from a place of concern. They see a person they love with “bad” numbers and they get worried. This is a normal thing to worry, and these folks mean well (usually).  But what we have to remember about diabetes management is that there are so many barriers to care, and sometimes, they are not what we expect.

I met this teenager that was supposedly “not taking care of himself.” His parents said he would never tell anyone he had diabetes, even though he was quite active and social in school. He’d given up on his pump and was barely testing anymore.  They worried he and his peers were experimenting with alcohol and were terrified of what would happen if things went wrong and no one knew about his diabetes. They felt like they couldn’t reach him and didn’t know what else to do. They were at the end of their rope. Which is how I ended up meeting him solo at his doctor’s office. He’d come to his appointment alone because he and his parents were arguing so badly with him about his diabetes care (or lack thereof) that both sides had enough of each other. He and I sat down to train on his new device together. When I told him I had diabetes too, he finally looked me in the eye for the first time.

“Really?” he said quietly, giving me the once-over, making sure I was a “normal” person. “It sucks,” he added.

I told him that I couldn’t agree more. I told him that it’s a crappy club we’re part of but it’s also not the worst thing to have. At least we get to play sports, travel, go to school, and do everything most other people do. We just have to plan ahead a little more. He told me about all the sports he plays and I told him I’d just run a half marathon, and did karate competitively for five years. We talked about Drake and how the new T.I. song was kinda lame and whether or not Tyga was going to really make it as a rapper.

I asked him what the hardest part about having diabetes was. It was then that he revealed that a few months ago, his pump had failed and set off a long, loud, disruptive beep during a recent sporting event and he didn’t know how to turn it off. It was obnoxious and distracting, and he didn’t know how to silence it. Some kids started making fun of him. He was mortified. Since then, the pump had remained stashed in a drawer, and his desire to be associated with diabetes in any way had fallen to zero. It wasn’t exactly helping him fit it. Bingo. There was the disconnect. Diabetes = embarrassing = not fitting = I’m not doing this diabetes crap anymore.

Barriers to care are social, economic, gender and race-specific. They are big and small reasons, and they are as varied as each person with diabetes themselves. But very rarely is someone “just not taking care of themselves.” No one wants to feel crappy everyday. No one wants to go blind or lose feelings in their limbs eventually. No one wakes up one day and says, “I’d just rather feel awful today and every day after.” It’s quite simply not that simple.

Sometimes, it helps to just ask someone how they are doing, and ask why things feel hard right now. And then just listen. It’s so hard for all of us to do that, diabetes or not. Have I nagged my husband/friend/parent about a habit they know isn’t good for them? You bet. It’s not the easy choice to just listen and support. But when we do, we’re often able to be so much more helpful than when dispense advice or admonishment. It’s that “no judging” thing that really goes a long way. Easier said than done, I know, but it’s worth it to try!

 

Positive ID!

About a year ago this time I was newly married and making the rounds in the world of “changing your name.” There was the Social Security office, the DMV, my credit card, my bank, my gym membership, my Facebook….the list went on and on. Turns out when you’ve been known by a particular name for 30 years, it’s recorded in quite a few places.

One thing I had not bothered to change during my initial sweep of my identity was my medic alert bracelet. I’d had the same one for several years. I’m funny about medic alert bracelets. I know there are tons of companies that make super-cute ones, and sporty ones and ones with pretty beads that don’t look all medical. But I have this fear that if I was really in trouble and unconscious that an EMT would look at my wrist for a medical tag, see a decorated bracelet next to a few other bangles and a watch and not notice that one of those happens to be a medical ID.

So although the stainless steel bracelet I wore for the past few years is…um…not cute to say the least, I felt like it was necessary to truly do the job. I really disliked it when I switched to gold-tone jewelry for a different day or outfit, because then the stainless steel ruined the whole “look” (Side note: HA!! Like I have a “look…” My “look” these days involves: 1. appear like you’ve showered and 2. no {visible} coffee stains…which is why I wear a lot of black…anywho…) For the past year, my bracelet has read “Alexis Pollak-Type 1 Diabetes,” which is my maiden name. I think I finally just tapped out on the whole name change thing by the time I realized it…so there it stayed.

And then the other day a friend posted a link to a medic alert jewelry website and I clicked on it. It was about 11 o’clock at night and for whatever reason I said “seriously, I’ve got to get a new bracelet with my new name on it” and I grabbed my wallet.  And then, my friends, I did some serious late-night shopping, diabetes-style. Oh yeah. I got ‘em all:

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New stainless steel bracelet, new gold-plated bracelet (so I don’t ruin any more of the aforementioned “looks”!), new earthy-Portlander-rustic leather with a steel plate and medic ID symbol and one stretchy black rubber bracelet that’s perfect for long, sweaty workouts. All now bearing my official, social security sanctioned new(er) last name of Hauptman. photo 1 (1)

Damn it feels good to upgrade. And if we have to deal with this stupid disease, we might as well get the cool accessories to match, right? (Note to self: do not wear all four new bracelets at the same time, no matter how tempted to do so….)

Carbs? What Carbs?

Super normal breakfast, right? Total units taken: 0.5. BG after breakfast: 93mg/dL. Here’s to holding on to 5.9%!

NO CARBS

Normal Pancreas Person Numbers.

Puzzle PiecesJacob and I have always had plans to start a family one day (nope, no people, this is not a “we’re expecting post” by any means…slow your roll!) but we both always knew that involves me having some seriously stellar numbers and in particular, a super-low A1c. Months ago, my endo told me she prefers her patients to go into the family planning stages with an A1c under 6.5%. To that, I said “great, that’s where I want to be normally – regardless of planning for a child or not.” It was already my personal goal to get my numbers at 6.5% or below, and I was able to finally achieve that a few months ago, after popping up into the 8% range after eating all the Pho in Thailand our travels to Southeast Asia.

But then I chatted with a high-risk OB about where she likes to see numbers in her patients with T1 and she said…under 6%. Which, if I remember what the “normal range” is for an A1c is correctly…as in a person without diabetes…it’s between 4 and 6%.

So um, great. You want me over here with the busted pancreas that produces zero insulin to get an A1c that is the same as a person who has functioning beta cells. Holy. Cow. At least, that was my initial reaction. But I’ll be low all the time! And never eating a single carb! That’s IMPOSSIBLE! I thought. And then I realized something that made all the difference.

An A1c of 6% translates roughly to an average BG of 120. 120mg/dL. That’s a number I like to see and that I strive for anyways. That’s a number that’s not that low to m and is in fact, quite nice. Averaging to that number, well that will take some work. That’s correcting a 140 with a quarter-unit of insulin. That’s keeping a hawk-like eye on post-prandial rises on the CGM. That’s some extra effort that takes some tweaking. But a BG of 120 is doable. When I looked at things that way instead of holy sh%$ she seriously thinks I should have a NORMAL PERSON’S A1C?? IS SHE NUTS!? it became way more doable.

So doable in fact that my A1c as of last Friday is 5.9%. Yep, that’s functioning-beta-cell-type-of-numbers.

Look, it wasn’t a cake walk (every pun intended). It was a lot of making time to exercise at 5 in the morning when it’s still dark out and even the dog thinks I have to be crazy to be going outside at that hour. It was a lot of “let’s make you (Jacob) an ear of corn to go with this steak and salad we’re having because I don’t want the carbs and I know this meal isn’t enough for you by itself.” It was correcting the 140s with tiny doses and bringing up lows with just a few glucose tabs instead of a double helping of frosting. But it was doable, and I didn’t go crazy in the process.

Now maintaining that number? Well, we’ll see about that! But as I’ve always said, getting to a goal like this boosts your “diabetes confidence” so much – you did it once and you can do it again. And thinking to myself “shoot for 120mg/dL” felt so much better than “try to have a normal A1c.” So I know I got there, now I just have to stay there…digging deep for the motivation as the holiday season approaches soon! Must…be…strong…near fun-size candy bars for Halloween….

Glucose Tablets: Making a Comeback.

Glucose tablets. We all meet them at some point during our diabetes life time. It’s usually towards the beginning when you’re first diagnosed and your doctor or CDE tells you that they are a simple, fast way to get the required 15 grams of carb down your gullet when you’re low. You might have used them frequently at the beginning of your diagnosis because you didn’t realize yet that Ben and Jerry’s tastes waaaaay better and also contains blood-sugar raising carbs that act quickly. In fact, most things taste better than glucose tablets. Yes, even the so-called gourmet glucose tablets that have become available recently aren’t much better. Even with better flavors, it’s so hard to get that chalky, powdery hunk of glucose chewed up and into your tummy so it can do it’s job. Which is why I actually haven’t used them in years. Tablets

Years ago, I discovered GU energy gel, which is designed for runners but comes in tasty flavors like chocolate mint and peanut butter. I love the little silver GU packets and throw them in my pocket or purse everywhere I go.  I’ve also kept plain chocolate or vanilla frosting in the fridge for years. GU packets are very portable, but at almost a $1 each they’re pricey. And one small can of frosting can fix 50 lows for the same cost. If I find myself out on the road for work and trending down, it’s serendipity to be close to a Starbucks so I can treat myself to a beloved cake-pop. All of these seem like way better ways to treat a low because they taste better and are easier to get down.

But the problem with all of those mentioned methods is the amount of carb they deliver. GU packs have 18 grams of CHO. Cake pops have 22 grams. And frosting can pack 21 grams in a single serving, All of my go-to methods for treating lows are in fact, more than the recommended amount of carb to treat a low. And for someone who is trying to achieve extremely tight control, this can actually cause more problems than its worth. I’ve noticed lately that most of these treats I use for lows can cause me to rebound too much – not crazy high rebounds, but enough to matter for my A1c. 22 grams of carb can take a 65mg/dL to a 150mg/dL pretty quickly. And if I’m only down at say, 75mg/dL and slightly trending down, a cake pop can send me through the roof.

Glucose tablets on the other hand, with only four grams of carb each are allowing me to customize how I treat lows so that I don’t over do it. They let me bring my BGs up to a level that’s safe without cranking them up too quickly or too much. I also like that I can have just one or two tablets for BGs that are simply trending down but not dangerous yet. And all of this may sound obvious, but seriously, I hadn’t bought glucose tablets in years and they’re kind of blowing my mind right now! I am loving being able to “titrate” my low treatments so that I don’t end up on the Glucoaster as often.

Although, there will always be times where I take a solid low as a wonderful opportunity to dig in to that pint ice cream – we do deserve to treat ourselves sometimes when we’re going through all the crap that diabetes makes us deal with. But for all the times when Hagen Daz isn’t  randomly available to me, I’m going old school and poppin’ open a tube of glucose tabs, letting that powder float through the air and downing my little customizable sugar tabs!

Have it your way.

CheeseburgerHave you ever ordered a venti, sugar-free, non-fat mocha…with whip cream? Or maybe you’ve ordered a bacon cheeseburger with fries and..a diet coke. I’ve been guilty of both of these orders in my lifetime and I don’t feel bad about it.  Many people might say “why not just go for the real deal and get the full-fat, full sugar mocha?” Or “what difference does the 130-calorie Coke make with the 1,000 calorie burger and fries?”

The difference is that with diabetes, we know how to make things count. We know where we’re ok to splurge and where we’d rather just save the calories/carbs because it’s just not that important to us. On a cold Portland day, I’ve honestly ordered a plain black coffee with whip cream at my local Starbucks simply because I wanted the “winter drink” experience without annihilating my BGs with a peppermint mocha monstrosity. Bolusing for the whip cream was worth it to me. Bolusing for anything else right there in that moment was not. And I’m totally ok with that.

I think what’s harder is explaining to other people why we make the food choices that we do. We’ve all been dining with friends and decided to indulge in a dessert or something sugary and had a well-meaning acquaintance get that confused look on their face and say “wait…I thought you said eating low carb was easier on your diabetes?” Or you’re out with friends who are used to the fact that you occasionally have dessert or might need to sugar for a low…but you’re not feeling carbs that day. You opt out of the chips-and-salsa-appetizer and cold beers and they wonder if you’re on some special new diet.

And no wonder – diabetes is super-confusing that way. Every day, we’re making choices about what we want to manage or not manage, how it will impact us in the moment and in a few hours, and whether or not something is worth it. On top of that, our goals evolve and change through the years. Someone who is aiming to tighten their control might make different decisions than someone suffering from serious burnout. It just depends on the person and what they’re trying to do with their diabetes management that day (or hour even!). But explaining that to others isn’t easy.

 One of the biggest stereotypes about living with diabetes is that there are hard and fast rules for everything, and that couldn’t be further from the truth. In fact the way we make most diabetes management decisions starts with “it depends.” And I think that’s the biggest education we can give to those around us – that this isn’t always an exact science and that it will continue to evolve for each of us throughout our lives and even day to day.

Plus, you can use it as an opportunity to really show someone what the term “bolus-worthy” actually means…

The undershare.

share clip artIt was one of those perfect summer nights – nice and warm but with a breeze that keeps it pleasant. It couldn’t have been a better night for a dinner on a friend’s patio. As we sat down to dine with a large group of friends and extended friends, someone I didn’t know well saw me plunk down my pump controller and CGM. She asked what it was and I explained that I have Type 1 diabetes and those were the devices that I use to help control things. Her response poured out of her, like she couldn’t stop the words from tumbling out.

“Oh my gosh my best friend from growing up has a son and he’s the nicest guy but he seriously just doesn’t take care of himself and he’s actually already blind from diabetes, can you believe that he was diagnosed when he was really little and he’s just always been awful about his care and he just can’t seem to win with it and so now he’s blind and has all sorts of other health problems and it’s just such a tragedy you know and I tell my friend all the time she has to try and help him but yeah I just couldn’t believe that he’s blind and so sick and dealing with all that you know?”

I took it all in. Took a deep breath.

“It sounds like he’s had a lot of challenges with his diabetes. There’s so many barriers to good care you know? Could be social, could be economic, could be-”

She cuts me off. “Oh no he’s had access to good care and the best doctors and they have a ton of money so it’s not that, he just, I don’t know he just doesn’t take care of himself. He’ll probably lose a leg soon if…”

She seemed to realize how it all sounded in that moment. She changed the subject to the weather. I smiled and moved on too. I wonder if she thought it was strange that I wasn’t blind or limbless or that I was drinking a glass of red wine and planned on dessert that night too? Who knows. I didn’t dwell on it. Not on that summer night anyways.

A few weeks later, a call from a friend came in. Her mom was sick. Breast cancer. It wasn’t looking good. The words tumbled out from her mouth too. She just wanted to get it out. Just wanted someone to listen. I’ve been through that one too. Breast cancer with a parent. My story didn’t have a happy ending. I can relate to her issue, but not in a good way. Not in a helpful way that would be encouraging to share anyway. My mind flashed to the dinner party. To how it felt to be compared to someone else’s only story about a disease. I waited, let her finish.

“I’m so sorry you’re going through that,” I told her. “How lucky that you mom has you there to help her. What a wonderful gift to be able to give her. When do you go see her next?”

Review: Halo Top Ice Cream

photo (8)I am very lucky that as a blogger, companies want to send me products to review. But the downside of that is that at least once a week, I get someone pitching a “sugar free” or “safe for diabetics” food that makes all sorts of outrageous claims about their carb counts, net carbs, and why they’re finally the “solution” to all my diabetes problems. I usually reply to those emails with an overly-detailed recap of carb counting and hope that I bore the sender enough that they just ignore me. So when I received an email from Halo Top Ice Cream claiming they were a good option for diabetics, I thought here we go again.

But then I went over their website and read about their founder and the fact that quote: “Halo Top was created by a guy named Justin who, like everyone else, loved ice cream but hated the fact that eating it made you feel bad. Bemused at the recommendation to eat a bite or two and put it away, Justin wondered: what about in the real world where nobody does that?”

Yup, that reeled me in. Because Justin, you and I have a thing or two in common my friend about having tasty foods in moderation. Mainly that moderation sucks sometimes! This fellow Justin perused the available options for low-calorie ice creams and was disappointed to find out that most of them used a lot of chemicals and fake ingredients and they tasted like it too. He set out to create an all-natural ice cream that he could eat the entire pint of in one sitting and not feel awful about himself. I like this guy and I like that mission. If ever there was a worthy cause, I’m on board with this one. Why can’t I have an entire pint of ice cream and not feel like I negated the entire half marathon I just ran? First world problems, I know.

So, he created Halo Top. Halo Top ice cream has only 70 calories per serving, 12-13 grams of carbs and 7 grams of protein per serving (they advertise only 4 grams of net carbs but us folks with the ‘betes need to know the whole value and make our own decisions about net or not). So if you wanted to sit down and have an entire pint of Halo Top, it will only set you back 280 calories. I’ve had so-called “healthy” snack bars with more calories than that. I was intrigued, but this would all fall apart if it also tasted low-cal. I grabbed one of each of their four flavors and a spoon and dug in. Here are my thoughts:

I started with chocolate because that’s usually my go-to ice cream flavor. It was tasty, but to me, not delicious. It still tasted a little too “diet” for me. I enjoyed it to a certain extent but I didn’t fall in love.  I pressed on with my mission though (hard as it was), and was soon redeemed. Lemon Cake, Vanilla Bean, and the Strawberry flavors were all spoon-lickin’, carton-scraping, gimme-another-bite-of-that good. All three of those blew me out of the water with their  flavor and texture. The icing on the proverbial ice-cream cake though is the fact that each serving was only 70 calories and 12 grams of CHO. This is something I can bolus for and not go off the rails. This was 12 grams of carb totally worth bolusing for, and wasn’t going to break the bank. I have to bolus more than that for a banana, and this is dessert! And don’t take my word for it on the chocolate flavor – that could be personal preference and it was still a tasty flavor, just not my favorite of the bunch.

Overall, I’m super-impressed with the ice cream, the flavors available, and the fact that they made this with no artificial ingredients. And most of all, I like that the mission behind this ice cream was really about understanding that sometimes, we all want to indulge and we should be able to without totally falling off the wagon. Here’s to a few more days of hot weather, a freezer full of Halo Top ice cream, and still keeping that A1c down. Winning!

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Thank you so much to Halo Top for the samples! Find out where to buy Halo Top near you by visiting their website here.

Heard.

I hear: “Nice job on those box jumps this morning.”

I want to hear:  “I can’t believe you managed to use your temp basal rates to get through a tough workout even though you started class at 65mg/dL.”

I hear: “Enjoy your coffee!”

I want to hear: “I know this might raise your blood sugar a little bit, so go ahead with that half unit bolus right now before you take a sip.”

I hear: “Alexis, thank you for providing such detailed information in your last email.”

I want to hear: “Alexis, I can’t believe you wrote such a coherent email after being up half the night with a bad low and then a rebound high, and you STILL got up at 5am to get your training run in! Wow!”

I hear: “Thanks for bringing lunch to our office today.”

I want to hear: “Thanks for bringing pizza and salad even though I know it will take all of your willpower to not have a slice of this delicious pesto pie and you’ll just be sticking to lettuce since you are trying so damn hard to maintain that low A1c of yours.”

I hear: “Some bread would go great with this salmon/cheese/meat/cruciferous vegetable you’re buying!”

I want to hear: “It must be so hard to not have carbs very often, but I bet it’s paying off! You’re doing great!”

I hear: “Sounds like you had a good day!”

I want to hear: “I know it must be exhausting to do your job, train for this half marathon and be working harder than ever at your diabetes managemet. But you are doing the best you can and that’s good enough. You are good enough.”

 

 

Comfort Zone?

arrow downI meet a lot of patients in my day job, and I’m used to everyone having a different way of managing their diabetes, with individualized targets and goals. This is often reflected when speaking with patients about where they set their low and high thresholds on their CGMs (the thresholds are the low and high numbers that the device will alert them at, meaning that’s the number they want to “take action” at). Patients feel lows and highs at different numbers, and they also have different management goals that make customizing those alerts an important part of using a CGM effectively.

But one patient recently told me he sets his low alerts at 60mg/dL, because he’s perfectly fine working, exercising, talking, walking, and functioning in the 60s. In fact, he considers the 60s to be within his target range, and a zone he wouldn’t treat for a low BG, even though this is considered traditionally “low.”

And because being under 70mg/dL is traditionally considered”low,” this begs the question: if a person is fully functional, comfortable and happy in the 60s, is that ok to stay there? Aren’t we hurting our brain cells and denying glucose to our neediest organ in the 60s? There’s a reason that threshold of “low” is set at anything below 70mg/dL, and it’s my understanding that reason is to protect our brains. However, I know many folks without diabetes who have tested their BG on my meter and been in the 60s – usually pre-meal and hungry – and are feeling just fine. But those folks aren’t getting to that low zone by taking artificial insulin, and they have the proper counter-regulatory hormones in place as well if they continue to dip, so that’s not really a fair comparison.

If you were comfortable and functional under 60mg/dL, do  you think it’s ok let that ride and consider it normal? Or treat it anyways because it’s clinically in the danger zone?