An Ode to Opsite.

On those hot, sweaty summer days, your devices might have an extra challenge staying stuck to your body. And on those hot, sweaty summer days where you are CLEARLY suffering from insanity because you said “yes” when your friend asked if you wanted to go to a hot yoga class on a day that’s already over 90 degrees then you really have an adhesive problem heading your way.

That’s exactly what happened on Tuesday night when my friend invited me to a hot yoga class (for those who haven’t heard of it before, hot yoga is regular yoga done in a room heated to 120 degrees. “Sweating profusely” doesn’t begin to cover it. It’s supposed to help you stretch out your muscles more and blah blah blah but I just like it because I think I lose like, four pounds whenever I go. Also, if I don’t go to yoga, I don’t do much stretching on my own which is bad for my now-over-30 body. Ug.) I obliged to attending the class, but I knew both my CGM and my pump would need some extra help staying stuck on me.

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I reached for my go-to solution in this case, Opsite Flexifix tape. I love this tape because you can order a huge roll for $20 on Amazon. It goes on and stays on completely clear, but it has grid lines that peel off so you can cut off a straight little piece from the roll. It’s flexible, comfortable, doesn’t irritate my skin and works like a charm even through swimming, surfing, and sweating like a linebacker in hot yoga classes and beyond. One strip across the top of my CGM sensor and two little strips across my pump adhesive were all I needed to power through that class.

With a little Opsite, I can concentrate on holding tree pose for longer than three seconds instead of if my pump and CGM are melting off my body. And trust me, when I go to yoga, I need all the concentration I can get!

Let me simplify this. Wait…

Bag of sugar“So, what if you just eat only meats and green vegetables and no sugar and no carbs? Do you still have to take insulin?”

This is the totally fair, totally logical, but still totally exasperating question I was asked at brunch on Sunday. Not exasperating because of the person who asked it. No,he’s a good friend who is well versed in nutrition, a brilliant medical consultant in his own right, and an endurance athlete who understands physiology quite well.

And guess what? Diabetes is still confusing to someone like him. That’s because this is a confusing disease to explain in general.  Think about it:

So, what is diabetes?

Having diabetes means I don’t make any insulin, which your body needs to break down food into usable energy.

So you take artificial insulin?

Yes.

So can you eat whatever you want?

Technically, yes.

So why are you downing that Coca Cola right now like there’s no tomorrow?

I took too much insulin by accident, so now I have to bring my sugar levels back up.

So sometimes you have to eat sugar?

Yes.

That’s awesome!

No, it’s not.

But wait, you said earlier you didn’t want any cookies, I thought you just said that having diabetes means you have to eat enough sugar?

*SIGH*

If you were naive to diabetes, can you imagine how hard it would be to take away a main, overarching concept from a discussion like that? Too much sugar one moment, too little the next. One minute we’re totally ok with a slice of birthday cake, the next minute we’re throwing out the diabetes excuse to refute mashed potatoes. Who can keep up with all that? I’m the one who has diabetes and it barely makes sense to me some days.

Sure, we all like to think we have a science behind every diabetes management decision we make, but do we really? Or are we just really trying to keep the balance between lows, highs, and having a life in between? Having diabetes means you are trying to recreate something that the body does as automatically as breathing, and we all know the human decision-making process is no match for the work of art that is human physiology. Still we try, and we try to explain it to those around us in a way that makes it easy to understand. But the truth is, living with diabetes is complex and layered, and as confusing as all get out.

Sometimes, I just want to play in to every stereotype I’ve ever heard about diabetes and when someone asks me why I’m eating this or not eating that I can just say:

“I got the sugars.”

‘Nuff said.

Just an average.

Long road aheadI’ve had some great A1cs in my life, and some really crummy ones. And most of the time, when I’m under 6.5%, it’s because of hard work and determination. But there are other ways to get to a low A1c. We can’t ever forget that A1cs are simply an average – meaning a great A1c can easily be composed of some really high highs and some really low lows. One of my best A1c’s in recent memory was from 2009 after I ran my first half marathon – it was at 6.1%, and between all my running and my great low number, I should have been feeling amazing.

The only problem was, I knew I had gotten there from seriously wild swings in my BGs. Training for my first half was one long episode of trial and error, with an emphasis on the “error” part of that equation. While I figured out basal rates and nutrition, I regularly ended runs at over 300 mg/dL because of overdoing my carbs, only to later crash into the 50s because I hadn’t adjusted for the latent effects of my exercise. All in, it got me to a nice low A1c, but the spaghetti-string mess on my CGM download was enough to prove the way I had arrived there hadn’t been pretty.

Fast forward to 2014 and training for my third half marathon. Things are way smoother than five years ago but I still see glimpses of those wide swings. Sunday’s seven miler had me coasting between 80 – 110mg/dL until mile five, when I saw the CGM arrow tilt downwards. I downed a packet of GU and smiled when the arrow righted itself a few minutes later. But an hour later, it was double arrows up, 164 mg/dL, and didn’t quit until I was well over 200. Hours later, I almost crashed, but stopped a low at 100mg/dL thanks to my CGM and a snack of an apple and a handful of blueberries. (Side note: it always feels better when you catch a low early enough to treat it with fruit, not straight sugar from something not-so-good-for-you, right?)

Exercise is by and large great for your diabetes management, but endurance training takes things to the next level. Small doses of insulin can become tidal waves, and food planning can become more confusing than ever. Although I’m still not perfect with my training and ‘betes management, I’m grateful for the tools I have now to guide me. A temp basal rate and a CGM can be the difference between a great day and a day spent on the Glucoaster. And the difference between an A1c made out of 100s instead of one made out of 50s and 300s.

Bananas.

That’s all. Literally “bananas” the noun and also the euphemism for “drive me bats%$* crazy. I bolus for them. I eat them. Things fall apart. And I know SO MANY people with diabetes who love bananas! They’re easy to bolus for! they claim. Lies.

 

Here is 15 minutes after eating a medium banana, for which I bolused three units.

Dex up

 

 

 

 

 

 

 

 

 

 

And here is exactly 40 minutes later. What. The Eff? Bananas. Ug.

Dex down

The long haul.

Long Road aheadYou know how awesome that feeling is when you finally reach a goal that you’ve been trying to get to for SO LONG? It’s awesome right? You’re all doing a double fist pump in the air and like “Hellll yeeeaaaah I made it!” That’s how I felt when I hit my A1c goal of being under 6.5%.

But I totally forgot that with diabetes, it’s not enough to hit the goal. Nope, now you have to figure out how to stay there. Like, for a long time (by that I mean forever). And that, my friends, is not easy. Because you see, getting myself to that goal required major efforts, concentration, high BG stalking, and tons of lows. And all of the effort can lead to one major case of Diabetes Burnout, which is the where my head space has been for about two weeks. I’ve been training for my half marathon which has caused some wide swings in the old BG department, as well as trying to lose a few pounds I’ve put on while getting my said stellar A1c. And all of it – diabetes included – has made me feel like one big glass of Totally Over It with a side of Give a Crap.

I have always said that the strength we find in having diabetes is not about the painful injections or the sore fingertips from sticking yourself. The strength you need to live well with diabetes is the strength to get up and do it all again – over and over for the rest of your life. That’s the real challenge we all face with diabetes. And there are times – especially after putting in a highly concentrated effort for a while – that you mentally feel like “I just…can’t. Not today. I cannot.

But the thing is, I know that I can. I have before and I will again. I’ve literally gone years with an A1c under 7% before, so there’s no reason I can’t keep things under 6.5% for a while as Jacob and I start thinking about starting a family (no, this post is not a hint that I’m pregnant! That will be a totally different post and you all will know I mean business!). The challenge is in finding the strength to keep going when that’s the last thing you want to do.

I might be training for a mere half marathon in real life – but life with diabetes is the Ironman of chronic illnesses. I’m looking to make the podium – are you?

 

Hallmark has nothing on these ladies. Diabetes Greeting Cards. Yes, for real.

Here in glorious 2014, there’s a whole LOT of stuff for diabetes that I wish I’d had around as a kid: My CGM for one, my tubeless insulin pump for another. And oh yeah –rapid-acting insulin would have really made a difference during those cupcake-fueled slumber parties circa sixth grade.
One thing I know for sure was missing were the right words to say from concerned friends and family members upon my diagnosis. There was a lot of muddled “I’m sorry to hear that” and “Will she be ok?” type of commentary. But really, all you want to hear when you’re diagnosed is that this disease sucks, but it will not change who you are as a person, and yes, you are going to be totally fine.
Other people in this wide world of diabetes wished they’d had this resource as well, namely my new friends Nene Adams and Corrie Kuipers who have been designing greeting cards for people with diabetes.

Yes, that’s right folks, we’ve got our own genre tucked under the “Get Well Feel Better” section of cards (side notes: interesting they file this under “get well” (because you can’t), but I guess where the heck do you put it? Under sympathy? Like, sorry your pancreas died, glad you’re still here? That might not fly. Anyways.) My personal favorite features a robot with a nod to the fact that those of us on pumps are a little bit more bionic than your average bear :)
I am so pleased to have Nene Adams and her partner Corrie Kuipers showcasing their cool cards here today,  which you can purchase here. Thanks for what you are doing Nene and Corrie! We could all use a little encouragement with this disease now and again.

My name is Nene Adams and I’m a Type II diabetic. My partner, Corrie Kuipers, and I have been designing and selling greeting cards (http://www.greetingcarduniverse.com/corrieweb) since 2007. Three years ago during an illness, I received a diabetes diagnosis. While researching the disease, I was surprised to find very few greeting cards for diabetics, especially children and teenagers. According to the Greeting Card 1American Diabetes Association, 25.8 million adults and children in the U.S. have diabetes. Corrie and I felt the need to create positive greeting cards addressing issues like insulin pumps, body image, lifestyle changes, feelings of isolation and other concerns.
We invited other uniquely talented artists – Doreen Erhardt, Sharon Fernleaf and Betsy Bush – to join us and make one of a kind greeting cards for people with diabetes.
Doreen Erhardt – http://www.greetingcarduniverse.com/SalonOfArt

Betsy Bush – http://www.greetingcarduniverse.com/dragonfiregraphics

Sharon Fernleaf – http://www.greetingcarduniverse.com/SFernleafDesigns

If there’s a child or teenager (or adult) who’s been recently diagnosed with Type I or Type II diabetes in your life, send them a “hug in the mail.” A little encouragement and a colorful greeting card will go a long way toward making them feel better about themselves.

http://www.greetingcarduniverse.com/get-well-feel-better-cards/diabetes

Bolus Optional…

That moment on Sunday, July 6th when you ran six miles the day before and kept your meals super duper low carb for the past 24 hours and you realize you haven’t bolused AT ALL since noon…noon on July 5th, that is. As in, more than 24 hours ago…

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Wowza. That whole “latent exercise effect” really means business! And yes, you can also see that I somehow, with no bolus on board, managed to still get a low of 40mg/dL! Who needs insulin when you’re training for a half marathon?

Low varietals.

Panicked SmileyI’m not really sure why I ask questions like the one I’m about to ask because the answer is usually “diabetes makes no sense,” but here it  goes anyway:

How is it that lows of comparable numbers can present so differently? You know what I mean? Like you can have a 54 that you barely notice, and your only symptom is “tired,” and then a day later you can have a 55mg/dL that has your dripping in sweat, the room spinning, and you tackling the refrigerator like a linebacker on Super Bowl Sunday. And don’t get me started on the random ones where you have symptoms that are just weird anomalies that you’ve NEVER had with a low before. Like the time I started crying for no reason on a training run with my best friend:

“Lex! You ok? Wait why are you crying, do you hate this run?”

“Um I don’t KNOW!? I’m just crying? I don’t hate this run…I just…”

“Are you low maybe?”

Yeah…about that one. That had never happened before and has never happened since (and PS – thank goodness my friend was there! I didn’t have the foggiest clue about why I was crying, she nailed it! Diabuddy).

But seriously – does anyone know why low symptoms can be so different from low to low? Even at comparable numbers? How does the body decide if this is a creep-up-on-ya-with-no-symptoms low or a HOLY HELL I WILL RIP THAT COOKIE OUT OF YOUR MOUTH type of low? Not that I’ve ever done that last one…ahem.

 

Micro Manage.

Ah half marathon training! It seems like it can only be good for you and your body. You’re torching calories, toning up those legs, and all that exercise should totally help control my blood sugars, right?

Um. Not really. At least, not right now while I’m getting used to running longer distances again. It’s been two years since my last half marathon, and although I’ve done a variety of sports and events since then (plus one three-month seemingly endless walk around Southeast Asia) I have not run longer than about 45 minutes in a veeeery long time. So on Saturday, I was in for a rude awakening in the BG department after I clocked a five mile training run.

I started off at a respectable 95 mg/dL, and cranked my basals down by 50%. I held steady for while, but just past the halfway point, the arrow on my CGM started to slant downwards, and every five minutes I was dropping lower. When I hit 75mg/dL, I decided to crack open a GU pack now rather than later to avoid a steeper low. Plus, I dropped my basals by 80%. I think I was dropping faster than I thought though, because another five minutes past and I was feeling pretty light-headed and tired (not that running can’t do that to you on it’s own, because it does, but you all know what I mean!). Knowing I’d just taken down 18 grams of CHO though, I felt comfortable pressing on, and I was back in the 80s and rising by the time I turned on my block. I felt safe again and satisfied that I’d still made it through the run despite the low.

That is, under the 80 turned into 180mg/dL, and then 230, and finally peaked at 275mg/dL by the time I was done with lunch. Ick. I have to blame my liver partially, since I did the training run on an empty stomach, and also the GU pack with a few more grams of CHO than was probably needed. And I had turned my basals down more than required I think. To top it all off, I didn’t bolus early enough for my lunch and that contributed to the meteoric rise. I rage bolused the stubborn high back down, and, as rage boluses tend to do, they all caught up with each other around 4pm when I crashed hard to a low under 45mg/dL. Not only had I corrected too much, but I was more sensitive to the insulin because of my long run that morning, which I had not taken in to account as I corrected the high.

In my sweaty, low fog, I reminded myself that with training for a distance event, subtle changes can have a huge effect. The goal here is to tweak things ever so slightly in one direction, not all at once with one giant swoop. It’s like going to power steering after having a regular wheel – you don’t need a ton of force to change the course of your BGs when you’re dealing with a ton of exercise. Small amounts of carb and insulin can make all the difference, while large amounts of either can inversely create massive problems.

As I head in to the next few weeks of training, I’ll need to work on some precision management of my numbers as I build mileage. The good news is, I have the tools to do it – pump, CGM, quick acting carbs, and the bat belt to carry it all in. Such a good look, right? Ha.

Bat Belt

Track Changes.

arrow up on a graphOne of the best things though about having a CGM is being able to track my numbers in the downloads. I’d never really been a person who downloads their CGM frequently before I started seeing a new doctor here in Portland. Her office does it the second I walk in for my visit, and that, along with my pump download, is the basis for our visit. We look for trends and patterns and discuss areas that need troubleshooting. Since I put the pressure on lowering my A1c a few months ago, I’ve started doing downloads at home as well, about every two weeks or so. And it has made all the difference in my management these days.

I’m a person who weighs herself most days of the week. The reason I do that is because I like to stay on top of any weight gain before it becomes a “whoa, how did that happen?” situation. When I see the scale creep up a pound or two, it reminds me to make healthier choices at the next meal. I know that for many people, weighing themselves this often would drive them crazy – or worse, drive them to anxiety and I don’t recommend it for everyone – I’m just saying that this is what has worked for me.

Similarly, downloading my CGM every two weeks or so and looking at the last week of numbers – and in particular the average BG – has helped me prevent the same kind of “creep up” in my numbers, just like my weight. A week ago I noticed that my average BG had gone up from 124mg/dL to 134mg/dL over a 14 day period. Not a huge jump, but that could be the difference between and A1c that’s under 6.5% or not and that does matter to me. When I see that uptick, I can also examine the download to see if it was just one off day or two that may have thrown the average off, or a pattern that needs work. In this most recent case, it was very clear that the higher average was caused by one day with a bad infusion site as well as the baby shower/delicious-carby-food-all-day situation that preceded said bum cannula. If I hadn’t isolated the causes in that way, I would have known that the rise in BG was due to my management decisions, and I can then proactively work to get it back down. With a CGM that’s providing almost 300 readings a day, it’s much easier to predict what your A1c will be than from a meter average with fingersticks only.

For me, checking in on my download reports has helped keep me motivated and on point. And again, I know it’s not for everyone, but checking in often on my weight and my numbers has worked for me, because it helps me get back on track before I veer off too far. And since we all know that “cruise control” doesn’t fly for diabetes management, that’s been a helpful resource for me. Do you all download your CGMs often? Or save it for the doctor’s office?