With pump infusion usually lasting three days, and my CGM sensor lasting seven days, it’s rare that the moon and the stars align and I have a day where I’m switching both of them out at the same time. But when it does happen it’s 1.) awesome and 2.) mildly horrifying. Let’s start with awesome.
There’s a term in the diabetes world that you may be familiar with if you’re a device user: the free shower. A free shower means you can take a shower completely device-free because you’re between site/sensor changes. And while this might not seem like a big deal, it is. If you’re like me, and your pump and CGM seem like part of your body, not wearing them even for a few minutes feels strange and liberating. It’s got a feeling to it like you’re playing hooky from school: you know you’re gonna have to go back, but right this second you don’t and it feels so good. We develop an awareness about our devices and where they are on our body so that we don’t waste expensive equipment. When a CGM sensor is on your leg, you pull pants on and off a little more slowly. When you put a pump site on your arm, you remember to stretch your shirt a little extra on that side as you pull it over your head. A device-free shower means you can forget out one of the thousand things we have to remember with diabetes for just a few minutes.
Now, on to mildly horrifying. Here’s a photo a why a double change day can be a little depressing:
We just generate so much expensive/high tech trash. The old pod from my pump contains a tiny little motor and batteries. The CGM sensor was hand-made in a lab, dipped in a platinum glucose-sensing solution, and packaged in a sterile environment, just for me. My insurance paid out the ying-yang for both. Then you add in packaging, adhesive solutions, adhesive backings, and everything else involved in getting these amazing products delivered to my doorstep, and it makes for one trashy scene.
But oh, how that trash is worth it for the moment after the shower when you can towel off without bumping off a site. It’s the little things!
Hangovers from alcohol are really awful, and the reason why at the ripe old age of 32 I can happily say I finally grew up a few years ago and haven’t had a severe one in ages (and believe me, it wouldn’t take much to invoke one these days…like two glasses of wine is a ca-razy night! My how times change!)
But there are two kinds of hangovers that don’t change with age when you have diabetes: the morning after a long night of lows or highs. Both suck, and both suck the life out of the next day. A night full of high BGs leaves you dry in the mouth the next morning, lethargic and unhelped by 17 cups of coffee. I tend to wake up super hungry on those days too, since I’ve got more insulin than a T-Rex pumping through my body (did dinosaurs get diabetes? Imagine the size of that pancreas!….digression. Ahem), but also feeling bloated and puffy. Ug.
Then there’s the low hangover, of which I experienced last week. The evidence the next morning was more damning than empty keg and a sea of red Solo cups in a frat house. Three drained juice boxes littered the bedside table, and I was still barely over 70mg/dL by 7am the next morning. I was tired from having been woken up 6-plus times throughout the night as my CGM alerted me to the low. I would treat it, but sometimes it wouldn’t come back up before the 15 minute “snooze” on my CGM alerted me again. The result was a gigantic headache, a fog thicker than molasses, and a day filled with coffee, lattes, and desperate espresso shots.
I think rough nights of blood sugars can be harder than a rough day of BGs. In the day time, you always feel like you have time to recover. Plus you can exercise for a high, reach for something tasty for a low, and talk to a partner if you’re frustrated. In the middle of the night, it’s a lonely feeling to deal with tough numbers in the dark by yourself. Although I always know I could wake Jacob up anytime for help or comfort, I don’t want my diabetes to disturb both our sleep. Instead, I try to quietly stab the straw through the juice box, or get up from the warm bed to the cold kitchen for some cold frosting from the cold fridge. On nights with highs, it’s the 12 trips to the toilet that annoy the most, each time feeling like a colossal effort and annoyance, coupled with a feeling of defeat. The next morning, the symptoms of the hangover vary depending on if you were low or high, but one result is always the same: a tired and grumpy start to the day.
The Diabetes Hangover: still best treated with a large coffee, eggs and bacon, and dark pair of shades!
Last week, a new email popped up in my inbox. The subject line was innocent enough. It read “Are you covering The Lancet study on Women and Diabetes?” No, I wasn’t, but I’d like to know more. I mean, I’m a woman with diabetes, so there’s that. Then I opened the email and read on. The email got right to the point, beginning with this:
“Are you covering The Lancet Diabetes & Endocrinology article on women with type 1 diabetes at significantly higher risk of dying compared with men?
According to the article in The Lancet, “Women with type 1 diabetes  face a 40% increased excess risk of death from all causes , and have more than twice the risk of dying from heart disease, compared to men with type 1 diabetes, a large meta-analysis involving more than 200 000 people with type 1 diabetes published in The Lancet Diabetes & Endocrinology has found.”
Um. Wow. No, Random Person emailing me about this incredibly depressing and downright nightmarish statistic, I’m not covering this article. I’m not covering this because there are enough scary and bad statistics out there about diabetes already. I’m not covering it because this blog isn’t about focusing on all the bad sh!t that could happen with diabetes, it’s actually about thriving with Type 1. I’m not covering that article because that information LITERALLY HELPS NO ONE FEEL BETTER ABOUT DIABETES.
No dude, I’m not covering that article. I’m actually deleting your email right now. There, now that feels better.
You know what really gets my goat? When I think I’ve really done a great job with my diabetes management. Those moments where you think you’ve navigated through a tough situation and come out winning. You’re all stoked and feeling like a diabetes ninja. And then I hear the beeeeep beeeep of my CGM, check the number and find out that diabetes just crept in through the back door and clocked me with no warning. Grrrr!!
Superbowl Sunday delivered the sneak attack punch, and in hindsight, I should have known. In typical American fashion, the Super Bowl party we attended included chips, dips, pizza, and sweets. I had thought I chosen well, sticking to mostly low-carb veggies and dips that would minimally impact the BGs, and I gave myself a pat on the back for only having one slice of pizza which I bolused early and well for.
But a few hours into the game, after bouncing no higher than 160mg/dL I crested over the 200mg/dL mark. It took a ton of extra insulin to get it down from there, no doubt due to some latent digestions of those high-fat dips and fibrous veggies, and maybe that pesky cheese on the pizza. Whatever the culprit, this high BG really ticked me off (or was it the tragic ending to the game that had me in such a bad mood? Could have been both). I hate it when I’m trying – like really, really trying – and diabetes pops up and says “Nah, you AIN’T got this” followed by an evil laugh and a flip of the bird.
That jerk diabetes. Always trying to get the better of me. Thank goodness there’s tomorrow – and it’s regular, healthier food options – ahead of me. Like the Seahawks, you’re not getting two in a row, diabetes!
Wednesday afternoon (and actually the entire evening as well) found me plane hopping on what can only be considered the longest route possible back to Portland from a sales meeting in Miami. Although I was stoked on the gorgeous meeting location, the trek across the country was no small feat. As I was getting ready to board my final plane in Seattle, I noticed that my pump was running on fumes – so low in fact that it didn’t even display a number of units left, just a flashing “LOW” symbol next to the insulin icon. And at the same time, my CGM let me know that I needed to connect to a power source…like NOW.
Mild to moderate panic set in for a moment. But, as it turns out, the CGM lasted the final two hours to get me back home and to a power outlet, and I had the 60 seconds required to do a quick pump site change in the ladies room at the airport before getting on the last plane.
But it is moments like this that I’m glad I’m a compulsive back-up planner. In my purse, I had both short and long-acting insulin pens, the needle caps to facilitate using both of those pens, and plenty of test strips and a lancing device at the ready. Being prepared helps bring me peace of mind, and although it’s annoying to carry extra supplies with me, nothing beats the safe feeling of knowing I’ve got a plan B.
Even though I didn’t need the backup plan, because I’m the fastest site changer this side of the Mississippi….(cue Western movie music…).
It was another crazy busy day at work. I had been to three different cities in the Pacific Northwest already, and it was barely 2pm. It was one of those days of running around, putting out fires, trying to get everything done on a seemingly endless list of to-dos. At one of my accounts, I was pulled in to a patient room to discuss our product with a young man 12 years my junior. He sat with his arms folded at the end of the exam table, eyes on the floor, while his doctor explained who I was. His doctor also noted his off-the-charts A1c, and how it was putting his future in danger.
I started to talk about CGM and how it had been helpful to me, and why it could be a useful tool for him as well. The young man would barely nod with each of my bullet points, and had yet to bring his gaze up to meet mine. This wasn’t working. Nothing I was saying was landing. Was he totally over this? Wondering why the blonde lady in the blazer was yammering on about some device? Annoyed at his doctor for telling him to get that A1c down AGAIN? Bored? Whatever it was, this kid was not. Engaging. With. Anyone. I changed my tack.
I asked him a question I often ask patients – it’s a question that gets them talking about their diabetes in a way that lets them also air their grievances. I asked him “what annoys you most about having diabetes?” It’s a question that can get us talking and relating about the shared challenges of diabetes, and lets them know I’ve been there too. It also helps me understand why their doctor wants me talking to them about CGM in the first place. I expected a post-adolescent smart-ass answer from the young man. Something along the lines of “EVERYTHING, DUH!” But he didn’t say anything. The room was quiet. Until I heard that he was softly crying. With his chin resting in his hands, eyes downcast, I watched a tear escape one eye and then his hand go quickly to his cheek to wipe it away. I kneeled down in front of him by the exam table so our heads were closer. He still couldn’t look at me.
“Diabetes is hard. It’s really, really hard, isn’t it?” I said quietly. “It’s a disease that we never asked for and don’t want to deal with. It’s a full time job with no breaks and I want you to know that I get that, and that I know that nothing about this is easy. And it’s ok to not be ok with that all the time.”
The doctor handed him a tissue. He nodded his head and wiped away his tears. I talked a little more – mostly just out loud and to the doctor to let him know how to go about learning more about our products. I thanked the patient and walked outside the exam room and I felt the tears welling up in my own eyes. I don’t think anyone could have answered my “what annoys you” question any more appropriately, because the truth is, it’s all of it.
It’s just the fact that we have to deal with this and others don’t. And yes, we should all count our blessings and look on the bright side and be grateful for our modern medical choices but there are moments where you just want to say “THIS DISEASE SUCKS AND HAS TRULY GOTTEN THE BETTER OF ME TODAY.” Especially if you’re having one of those days and some lady just barged in to your doctor’s appointment (oops). It was powerful, sad, and also strangely connecting for him to have cried like that. It made me hurt for him because he’s part of my non-working-pancreas tribe and he’s having a tough time. We all have tough times with diabetes. But that’s why we have to let it out sometimes – whether it be at the doctor’s office or with a loved one or on a blog or forum. It’s ok to answer the question “what annoys you about having diabetes?” with “All of it.” And to have a good cry about it.
“Ok and with your steak tonight miss did you want a baked potato or french fries?”
“Um, neither, thank you. I’m good.”
“Are you sure, they come with the entrée for free?”
“No thank you I don’t want any. I have Type 1 diabetes and I just don’t eat potatoes that often. It’s not that I can’t eat them ever it’s just that they’re really hard to manage for me so I just generally don’t have them and it doesn’t bother me because I don’t even like potatoes that much and…” oh my god please stop talking Lexie this poor waiter doesn’t need to know all of this!
Ever found yourself over-explaining diabetes to a complete stranger for no reason? I found myself doing just that last Wednesday while at dinner by myself in a little town in Eastern Washington state. I was staying the night there for work, and had wandered to a local chain restaurant, laptop in hand, ready to crank our some work and enjoy a nice, low-carb steak and salad dinner. But apparently, one little question about potatoes was all I needed to turn in to an over-enthusiastic, over-sharing little bundle of TMI. And although I consider myself very open and willing to talk about having diabetes, this was a little much, even for me.
Why do these spontaneous diabetes explosions happen sometimes? Why do we sometimes feel the need to justify and explain our disease to some people – even if they couldn’t care less? And even for those who do care – do they really need ALL the details? Probably not.
I think the answer lies in the fact that for us folks with diabetes, our brain is so often crammed to limit with diabetes stuff, that it’s all we can do to keep it from spilling over some moments. What that waiter doesn’t know is that as I’m scanning the menu, I’m also clicking in the trend line on my CGM, thinking about my IOB, wondering if that 20 minutes on the elliptical is hitting me now, and curious if the their “world-famous steak glaze” is packed with sugar. It’s almost as if him coming up to take my order shocks me out of my little diabetes number-crunching bubble that I’m living in. It’s actually a wonder that more outbursts don’t occur, given the amount of time diabetes is running laps through my mind every day.
Some of these explosions occur more subtly. It’s those moments when a friend asks how you’ve been and you realize you spend 20 minutes talking about how absolutely bonkers your BGs have been for a few weeks. It’s the moment when your sister asks you if your pump is waterproof and you wax eloquent on diabetes innovations for the better part of an hour. I think what this shows about us is that we do have a tremendous need to talk about this disease. Because when we keep it all inside in that little bubble, it’s bound to burst at some point. Diabetes takes up way too much of our mental capacity to not overflow at some point.
If you’re lucky, these explosions land on family members who patiently listen, nod their head, ask questions, and support you. And if you happen to do it to the poor waiter in small-town Washington who was just freaking wondering if you wanted potatoes, well, just accept his polite and awkward smile and move on – no major damage from that explosion except maybe you gave him a funny story to tell his coworkers at the end of the night. And that’s ok!
For the past few years, my stepmom has given me candy in my stocking for Christmas – and not because she’s trying to tempt me. She gives me Jelly Beans in small packets and boxes that are great to stash for lows in the car or my gym bag. I’m always happy to have these on hand because hey, they taste way better than glucose tablets and they work fast. So when she gave me a bunch of assorted Jelly Bellys in my stocking this Christmas, I took the haul and tossed it in the center console of my car without much of a second glance.
And then I got low yesterday, and reached for a packet. I quickly realized that these were no ordinary Jelly Bellys…no my friends these were special Jelly Bellys. Fit for royalty in fact, as evidenced by the illustration on the packet. And when they say “sparkly” they do not disspoint. Nope. Those are ACTUALLY SPAKRLY JELLY BEANS. The enchanted kind, as it were. Who knew?
Most fabulous, fancy low snack ever? I think so!
How can I NOT start the new year with a post about exercise? I wish this was a post about how much exercise I’ve been doing and what cool new race I’ve signed up for as a resolution, but it’s not. No friends, this is way less exciting. I have an injured Achilles tendon and I’m pretty much here to tell you that this is one big bummer of an injury (sorry, I was probably supposed to start the year off with something positive….later this week maybe? Can I just bitch for one post? Ok thanks….)
I ran a half marathon in August of this year, and it went great. Towards the end of my training though, I noticed pretty consistent and troubling pain in my left Achilles. It would be the worst first thing in the morning upon getting out of bed. I would run on it anyways, and the pain would subside about five minutes into the run, then return full force shortly after finishing. It got bad enough that I would hobble a bit in the evenings after a morning run and walking on it all day. Not good.
I did some research online: really not good. Achilles tendon tears can be career-ending for runners. They occur more frequently as we get older (great, thanks for the reminder), and they occur when ramping up mileage or speed too quickly (I trained pretty fast overall for the half). But I actually didn’t need the internet at al – I need not look further than across the breakfast table to know I had to work on this injury. My husband actually blew out his Achilles several years ago. He said although it wasn’t a crazy painful injury, the rehab was torture. He was forced to stay off it completely for weeks, completely limiting his mobility. The road to rehab was long and boring, and he has said more than once that it was one of the most challenging times in his life. Yeah….let’s not push it with this one.
I took a firm, no-running whatsoever stance way back in November, with the intent to give it two weeks and see if it improves. Now, I’m nearly six weeks deep of no running and it hasn’t improved much. Next week I’m going to see a doctor about it finally, but I’m concerned about it.
Without running, my activity level has changed quite a bit. I still have to get the dog out several mornings a week, so I’ve been walking her for an hour in the mornings. And if you thought getting up at 5:30 to run for 30 minutes in the Portland winter sounded unappealing, trying getting up twice as early so you can walk twice the distance and not be nearly as warmed up as a run would get you. Super. Lame.
I’ve been going to strength training classes as well, but there’s nothing that torches calories or is as mobile as running. My work trips have forced me to get on the dreaded elliptical in hotel gyms, and truly, I would rather watch paint dry than do the elliptical, I find it so so boring.
The biggest challenge with all of this, aside from me missing running is that it has quickly cranked up my insulin needs. You can see it as clear as day between my endo appointment on September 1 and the one on December 5th. My total daily units in September were in the high 20s. December has shown a 10 unit increase to the high 30s. Ug. We all know more insulin means more weight gain, which can lead to insulin resistance. I’ve gone up a few pounds despite my best efforts to eat well, partially because I have to maintain this low A1c. And lemme tell ya, the holidays is not the season I want to be restricting anything.
I am hoping a trip to the doctor will at least give me a clear path of how to move forward. My fear is that I won’t be able to return to my beloved running, but I’m trying to think positive. Until then, I’ll be the crazy dog lady on walks at 4:45 in the morning….see ya out there.
I’m taking a much needed break as soon as the clock strikes midnight on the 31st. Right up until then, I’m trying to close out the year at work. So I will leave 2014 with a simple thank you to my readers and the Diabetes Online Community. You are the reason that I know I am never alone with diabetes. Thank you for being my support and my sounding board for another amazing year.
To a healthy, happy 2015, full of low A1cs, and high amounts of joy.