You 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?
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 American 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.
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…
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?
I’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.
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.
One 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?
There are very few things I miss about taking injections since going on a pump in 2008. Pretty much everything is easier and works better for me with my insulin pump, and I don’t miss those orange-capped spears floating around the bottom of my bag threatening to poke me while rummaging around for a lip gloss, and I don’t miss the constraints of using injected basal insulin which can’t be changed, raised or lowered once delivered. But there is one thing that I miss about injections and that is the simple fact that if you inject insulin, you know you got it. With a pump, there’s a million and one reasons to wonder if the damn thing is working or not. Case in point, Saturday night.
Saturday had me throwing a party for one of my best girlfriends in celebration of her recently born twins (that kind of party, wherein the babies are present for the shower is actually called a “Sip and See,” in case you didn’t know, and I find them to be the ideal way to celebrate a new mama because she can consume the alcohol along with the other guests at the party and quite frankly, she deserves the most). There was running around to set things up, all sorts of combinations of foods I don’t normally have (cheese plate, sushi appetizer, sandwiches and salads and of course, cake and champagne to really up the festivities), and bolusing intermittently to keep up with it all. By the time the party ended, I was over 200mg/dL with plenty of food still digesting.
I bolused another two units and got things down to a more respectable 123mg/dL, but that was as low as things went. I bolused for dinner (this was also a large meal of restaurant foods I don’t usually eat, and a combination carb-and-high-fat-meal to boot) and hoped that things would even out but they didn’t. Midnight showed a steady increase in BGs and then by 3am I was over 200. I sleepily bolused another two units. Then at 5am, I was up at 280mg/dL…with an arrow straight across. I was due for a pump change later that day but, finally exhausted by all the wondering and not wanting to postulate if it was the pump or the food or the gravitational pull of the moon causing the high I got out of bed and switched out the pump anyways. Within an hour I was settling back into a normal range with no problems. It probably had been a pump problem all along.
So why not change the site when I first realized I was staying high, despite the bolusing? Well the train of thought goes like this: Hhhmm, still high even though I bolused…well I guess there was a lot of cheese on that salad and sushi always does a real number on me and maybe I should wait it out a little but and just see if it comes down soon and oh I need to call that dinner place for a reservation tonight and wait that’s still high but not so high that I’m convinced my pump is broken because wouldn’t I totally be over 400 right now if that was the case and I’m not so I shouldn’t change it yet, right….?”
And so on. Recently, a person I work with said they change their son’s infusion site if he’s too high and has been holding steady for a few hours after the last bolus. Because if the active insulin is technically done and you’ve corrected and you’re still too high, then clearly, you’re not getting all your insulin, right? Why I don’t think like this in the moment, I don’t know but sometimes, I just push things too far with pump sites.
With injections, you never really have to wonder if you delivered the insulin or not. With pumps, they can play all sorts of mind games with you – making you wonder if they’re just “sort of” working, delivering just enough insulin to let you run high but not crazy town high…which is the same amount that will drive you just a little but nuts while you hem and haw over whether you should change your infusion site.
Note to future self in this same scenario:
Change the damn infusion site. If for nothing else than to salvage a good night’s sleep. That’s totally worth it in and of itself.
I woke up on Monday morning, all stoked that I’d been able to do my basal test the night before. I couldn’t wait to find out where my trouble spots were and how I could fine tune my overnight basal rates into perfection. I eagerly reached for my CGM and found…this.
Um. Well then. Ok! Guess that basal rate is TOTALLY WORKING FINE WITH LITERALLY NO PROBLEMS WHATSOEVER OKTHANKSBYE!
As anti-climactic as it was to see that flat line the next morning, it’s actually extremely helpful to prove that it is NOT my basal rates that are the problem. Eliminating the basal as the culprit of overnight blood sugar problems means I can definitively point a finger at boluses and food, and that’s extremely helpful. Jacob and I tend to eat dinner late because of our schedules, and although we cook very low carb, carbs sometimes get replaced by higher-fat content foods, which take hours to digest and can cause a rise much later.
Testing my overnight basal rate was as much of a pain in the arse as I thought it would be, but totally worth it to be able to eliminate at least one of the variables that could be causing issues. And with diabetes, given that there are so many factors that affect our BGs, it’s helpful to know at least the background insulin is rolling steady. I should say that ideally, you’d want to repeat a basal test a few times to corroborate your results…but we all know that’s not going to happen anytime soon for me.
As a result, I’m going to work on playing with my dinner-time boluses. It’s really challenging for Jacob and I to eat earlier than about 8pm, given our schedules these days, but to combat the latent digestion issues, I’m going to try running some higher temp basals for the few hours after eating, and perhaps bolusing ever-so-slighltly before bed on some nights when I can see a steady rise. Love playing mad scientist when I actually have some data to back it up! Well worth the challenge of Monday night to have this information. Happy Friday folks.
I’ve blogged about…I dunno maybe a thousand times about how I need to do basal testing. And then I never do it because you have to:
Eat early, and bolus precisely.
Have a low fat and low carb meal.
Not consume any alcohol.
Not work out super hard the hours before you start the test.
Need a full 8 -hour night of sleep (for an overnight basal test anyways)
And all of those things happening right now feel more unlikely than the planets aligning but lo and behold, Sunday night found me chilling at home, caught up on life, and sans husband (who would prefer something a little more exciting for dinner most nights than plain chicken breast, mushrooms and green beans – can’t blame the guy), so I threw caution to the wind and said “hey self, let’s get a little crazy tonight and ACTUALLY DO SOME BASAL TESTING.”
So, I pulled out my copy of Think Like a Pancreas by Gary Scheiner (great book, and a great dude, AADE Educator of the Year last year and a fellow member of the T1 Tribe), and set myself up for a proper overnight basal test: Low carb, low fat meal, precision bolusing, no wine, workout done hours and hours ago. And only a few episodes of the Real Housewives of Whatever City We’re On Now standing between me and a 10pm bedtime.
Finally, I’ll get some unbiased insight to some of those pesky overnight highs and early morning lows that I struggle with, and I can do some basal tweaking based on, you know, actual data, instead random assumptions driven by morning-low crankiness. That’s a win right there! Results to follow later this week!
Folks, it’s been a looong time since I’ve let almost an entire week go by without a blog post. That’s a testament to how crazy busy my life has been since I took this new amazing (but insanely demanding) job. But even though I’m writing this on Thursday night way too late and running on fumes, I just had to get this post up, because if this ain’t Friday news, I don’t know what is.
I finally made it under 6.5%. In fact, I smashed my goal and landed at a 6.2% per my labs drawn on Monday. And even though this has been the hardest time I’ve ever had getting my A1c low, it was so worth it for the moment I opened up those lab results and saw that glorious number.
If this was the Academy Awards, my acceptance speech would go something like this:
I’d like to thank GU energy gel, for curbing all 7,000 lows I’ve had in the making of this A1c. I’d like to thank my limited, but important counter-regulatory hormones for their contributions. I’d like to thank exercise for being consistently helpful in times like this. I’d like to tell pasta, pizza, and sushi to kindly bugger off for all eternity, or at least throw me a bolus bone once in a blue moon. I’d like to thank my carb counting app and my bolus wizard for forcing me to actually make this whole diabetes thing a science. I’m eternally grateful to my director, my CGM, who guides my every move. I think insulin has had enough of the glory for a while here though – ammaright? It’s like the Brangelina of the diabetes world – all shiny and heroic but THERE ARE OTHER ACTORS HERE OK?!
And I’d really, really like to thank my kind and patient husband for being the most supportive person on the planet and instead of calling me a stark raving lunatic during every meltdown I had getting to this number, just gave me a hug instead.
Take that, diabetes!