I know a lot of people who have type 1 diabetes. And I consider many of them friends of mine.
You know what’s so cool about that? It’s that diabetes was merely the common denominator, something that we knew we shared, but not the sole reason for friendship. Diabetes provides a launching point into which we can find other shared interests: from TV shows to travel destination wish lists, the conversations we have don’t often linger on diabetes. But even when they do, it’s nice to talk about anything-and-everything diabetes with people who speak the same T1D vernacular.
I’d met half of these people prior to this event, and I became fast friends with the other half, thanks to our common denominator: diabetes.
Case in point: An end-of-summer pool party I attended a few weeks ago that introduced me to a handful of T1Ds. Sure, we started off talking about things like medical research experiences and CGM trials, but then we moved on to the other topics we cared about and really got to know each other. It proved to me, for the umpteenth time, that it’s just so dang special that something as shitty as diabetes can bring so many good things into my life, including friendships with some marvelous human beings.
I don’t understand why the sensor error occurs. But it almost ALWAYS happens on the ninth day: My sensor will work wonderfully and provide me with extremely accurate data, but then BOOM it’ll sporadically stop working and produce graphs like the one above that are virtually useless. Even worse, there’s no telling when exactly it’ll start communicating again with my receiver. The error message SAYS I’ll get data back within 3 hours, and I normally do, but there’s a big difference between going 10 minutes and going 2 hours without any readings.
This device has so many good things working in its favor: longer wear, painless insertion, increased accuracy, compatibility with acetaminophen, slimmer profile. But I’m of the opinion that if something says it will totally function for a certain length of time, then it WILL. The fact that it doesn’t, and that this has occurred more than once to me, is alarming and frustrating.
The only possible explanation I’ve come up with is that maybe the upper arm isn’t a great place to wear the G6. As we all know, Dexcom devices are FDA approved to be worn on one location, the abdomen. However, that hasn’t stopped the cheeky diabetes community from wearing it elsewhere. Besides the upper arm, I’ve seen people with it on their forearms, thighs, and calves. I even know one clever person who chooses to wear it on the upper bum during the summer months to prevent tan lines (hilarious and brilliant, IMO). I choose to wear my CGM on my upper arm most of the time because it’s comfortable there, and I like to give the sites on my belly a break. But maybe it’s time I start wearing it more frequently on my stomach, the “officially okay” site, to see if that prevents these ridiculous sensor error scenarios.
What I’d like to know in the meantime, though, is has this happened to you or anyone you know using the G6? Has anyone pinpointed a cause, and is it worth notifying Dexcom of this issue? I’d love to hear your stories and thoughts – drop a note in the comments or get in touch with me directly!
Not too long ago, the following message appeared in the inbox of one of my social media platforms:
I’m so sorry to bother with something like this. I down to my last pod. And.. currently I’m having insurance issues.. I was wondering if there were any pods you could spare? I’m trying to search around. Or if you know anyone that does have extras? Or samples? I would hate hate to return to multiple daily injections.. I know u understand that. If not it’s ok. Sorry to bother. I don’t know where else to try apart from everything else I’ve tried
When I read it the first time, my heart immediately sank. The message was fraught with desperation, as evidenced by the typos and fragmented sentences. My gut reaction was to reach out to this person and let them know that everything would be fine, that there had to be an option out there that would help them.
No pods to spare.
My next reaction, though, was pure skepticism. I’m not proud to admit that, but here are the facts that I was facing:
I did not know this person. I tried to look at their profile to see if I could learn more about them, only to discover that it was private. I couldn’t see any of their information, other than a minute profile picture and numbers regarding their followers/activity.
This person said they might be forced to go back to MDI. Personally speaking, if I ran out of pods and had to go back to shots, I wouldn’t like it – but if it was my only option, then of course I’d do it. I did it for something like 17 years before ever trying a pump. It sounded like this person wouldn’t want to do it, but…
Most importantly, I do not have any pods to spare. I’m not sure why this individual thought that I did. It seemed like they’ve been asking as many people as possible on social media for pods, which makes me believe that they’re exploring the #omnipod or #podder hashtags. Regardless, I rely on regular shipments (every three months) from Insulet in order to maintain the bare minimum of pods that I need. And I can’t exactly give up “spare pods” that I don’t even have.
As horribly as I felt for this person, I had to take into consideration the facts that were in front of me, as well as the unfortunate truth that you can’t trust everything on the Internet. I told them that they should try to reach out to Insulet for assistance, and that I would be hoping for the best for them. I know that my kind words probably brought little comfort, but it was all that I had to offer to this total stranger.
The whole exchange haunts me. That’s why I want to know…
There’s nothing worse than medical adhesive that just won’t stick.
If an infusion site or CGM sensor fails to stick to the body, that almost always means that there’s no choice but to dispose of it prematurely. And that is the definition of a total waste, which is a horrible feeling when it comes to exorbitantly expensive diabetes supplies.
So you can probably imagine my vague sense of panic when less than 12 hours after inserting a recent CGM sensor, it started to peel around the edges. Actually, that’s phrasing it a bit lightly – one half of it was practically flopping off my arm. No matter how much I pressed it back against my skin, it wouldn’t stick. I knew that I needed to save it somehow, and fast.
My first resort was a Patch Peel – it’s cut to accommodate the CGM transmitter; as such, it was the most secure option I had available to me. But seconds after applying the patch, it started peeling all around the edges. WTF?! It was definitely the same strong adhesive that Pump Peelz uses on all of their products, so I didn’t understand why it wasn’t sticking. I cursed under my breath as I racked my brain, thinking of anything else I could use to salvage the sensor. I couldn’t bear the thought of throwing it away after less than a full day’s worth of use.
Smiling big with my salvaged sensor.
Then I remembered I had SkinTac, which is so strong and glue-like that I normally avoid using it. But desperate times call for desperate measures, right? I lifted up the edges of my patch and wiped the SkinTac all around my skin, patting the patch gingerly back into place as the SkinTac dried. And…it worked! My patch got wrinkly as hell as the adhesives bound together, but I didn’t care because I’d managed to save the sensor. Will it hurt in a few days when I peel off all those layers of adhesive? Oh yes. But I won’t mind at all because I didn’t have to waste a sensor with a retail value of about (cue the gasps) $165.
One Monday per month, I’ll take a trip down memory lane and reflect on how much my diabetes thoughts, feelings, and experiences have unfolded over the years. Today, I remember…
…the first time I met a diabetes doctor (endocrinologist, or endo for short) who I didn’t like. At all.
I knew right off the bat that we would be a bad fit, because he started the appointment by sharing his own blood sugar with me (as he was also a T1D). “Oh, I’m 136 right now…that’s a bit high, so I’m going to take insulin for it.” He reached for his insulin pump and I stared at him, nonplussed. Since when was 136 a “high” blood sugar? Why was he sharing this with me? If his own target blood sugar range is so narrow, then what the hell is he going to think of me when he reviews my own data?
The face I make when I think about that awful appointment and the negative thoughts it gave me about my A1c.
The appointment only went downhill from there. At this point in my life, I was a brand-new college freshman, and my diabetes was simply no concern of mine. So my blood sugars and A1c weren’t great.
And I got scolded for it.
Throughout the entire appointment, I felt judged. I held back tears at points because I felt that I had to explain myself to this guy, that I had to somehow get him to understand that the transition to college hadn’t been easy on me, and that’s why my A1c was high. But I couldn’t get the words out. Instead, I sat there, numb, as he lectured me on what I should and shouldn’t be doing to take care of my diabetes. He kept insisting that I go onto a pump, which at that time, was totally scary to me – a non-option. He was so adamant that I got frustrated and shut down towards the end of the appointment, nodding and smiling tightly at his words.
I’m certain that I cried on the way home from that appointment out of frustration over how it went. I didn’t feel motivated to take better care of myself; instead, I felt rotten. I realized that just because someone is a doctor, it doesn’t mean that they necessarily know how to convey messages about health to patients. In other words, not everyone has an appropriate bedside manner.
Fortunately, that was the first and last time I saw that doctor. He moved to a different practice weeks after I saw him. My next endo appointment was with my current doctor, and seven years later, it’s one of the healthiest doctor/patient relationships I’ve ever experienced. When I look at it that way, it was worth experiencing the worst in order to get the best.
And the silence was refreshing. I didn’t like being without my CGM for a week, but there’s no doubt about the one positive effect that its absence had on me: It gave me a much-needed mental break from an audible aspect of diabetes.
Diabetes can be LOUD sometimes. Especially in hypo repeat mode.
It was a blissful reprieve from my diabetes literally screaming at me like a needy baby. A week-long vacation from my CGM hollering at the top of its lungs “HEY YOUR BLOOD SUGAR IS HIGH DO SOMETHING ABOUT IT” or “WAKE UP YOUR BLOOD SUGAR IS LOW YOU BETTER TREAT IT RIGHT NOW.”
It’s rare that I can describe diabetes as peaceful; in this case, it was, and the experience will make me consider putting diabetes on mute a little more often.
No carbs. No dairy. No meat. No processed foods. Strictly vegetables, fruits, and shakes for the next three days. 72 hours – I could do it, right?
Last week, I completed a 3-Day Cleanse. My goal was that it would help me feel a little bit refreshed after a couple weeks of nonstop gluttony. I figured it’d help reset my system and make me feel less bloated and tired. I didn’t want to do a typical “cleanse” though, the kind that forces you to stop eating any and all food and stick with juices. That’s why I did this particular program – I would be eating real foods on a regular basis throughout all three days. The bonus was that it would be foods I’m familiar with and are generally low carb, which could only mean good things for my blood sugar.
My routine for all three days would follow this format: Wake up, drink a glass of water, blend a shake together with one serving size of fruit. I’d have a cup of herbal tea one hour after breakfast, and one hour after that, I’d have a fiber-filled drink. Lunch would consist of another shake, one serving of vegetables, one serving of fruit, and one spoonful of hummus. I’d have an afternoon snack of baby carrots and one spoonful of almond butter with another cup of herbal tea an hour after consuming the snack. Dinner would be one last shake, one cup of vegetable broth, and a spinach salad with olive oil and lemon juice drizzled on top. I could have a final cup of herbal tea any time in the evening.
I didn’t expect to learn as much as I did throughout the program, but those three days taught me a lot about how the things I put into my body impact not just my blood sugar, but my state of mind. Here’s what happened during my cleanse:
Day 1 – This day was by far the easiest to complete. Despite dialing back the amounts and types of foods I was consuming, I didn’t feel hungry at all – everything sated me. I was really enjoying watching my Dexcom CGM graph because it barely budged. I stayed right around 90-110 mg/dL for most of the day, probably because I was eating minimal carbs. Fewer carbs means less room for error, and this concept was definitely cemented into my mind by the end of the cleanse. I went to bed with a slight headache at the end of day 1, but a smile on my face. This would be a breeze!
Day 2 – My CGM sensor went kaput by mid-morning, and I was PISSED about it. I wanted the ability to continue tracking my blood sugars on this cleanse, and suddenly it was no longer available to me (because oh-so-conveniently, it was my last sensor in stock). Fuming over my CGM situation, I started feeling slight pangs of hunger shortly after having my fiber drink. I ate lunch as soon as I could after that, and spent much of the rest of the afternoon fighting a headache and dreading going home to see – not eat – my mom’s delicious home cooking. On the brighter side of things, my digestion seemed to be improving already and I felt a bit less bloated.
Day 3 – I went from “Oh, this cleanse will be a breeze!” to “OMG THESE ARE THE LONGEST THREE DAYS OF MY LIFE GIMME REAL FOOD AGAIN BEFORE I HAVE A MELTDOWN” in less than 48 hours. That’s gotta be a new record. I distracted myself as much as I could from my misery by burying myself in my work, which helped to a degree. But I couldn’t fight the lightheaded sensation that seemed to grip my entire body. I was confused by that – I though only eating real, plant-based foods would eliminate crummy feelings. Maybe I was experiencing a sort of withdrawal as my body got used to this new diet? I can’t confirm that, but I suspect that after a few more days, I likely would’ve felt much better…or hungrier. I’ll leave it to speculation because there is no way I’m doing this again any time soon. But MAN, am I proud of myself for completing the cleanse without cheating, not even once.
So if I felt THAT miserable toward the end of the cleanse, then why am I glad that I did it? Mainly, I’m astonished at how much easier it was to maintain my diabetes and “desirable” blood sugar levels in that three-day time period. Even without my CGM, I was still getting great results. It reinforced something that I already knew: that the body will react accordingly to the quantity and quality of foods that are used to nourish it. It made me realize that perhaps I should toy with cutting down my daily carb intake and upping my veggie/fruit/protein consumption to find out whether that positively impacts my blood sugar in the way that I think it will. This doesn’t mean I’m starting a low-carb or keto diet; rather, I’m simply going to follow a more thoughtful one.
To sum it up, this three-day cleanse/torture act/lesson (whatever you want to call it) helped make my understanding and appreciation of food much stronger, which makes it worth it in my book.
The summer heat seems to be here to stay in Massachusetts. We’ve experienced several weeks of soupy, high-heat weather that *almost* makes me long for cooler, autumnal days…but not quite, because that just means winter (and snow – blech) is right around the corner.
Truly, I do enjoy the summertime. To me, summer is about trips to the beach, ice cream consumption (and lots of it), barbecues with family and friends, long walks in the neighborhood, and endless outdoor adventures. Aside from all of those lovely things, summer also means that it’s time to be a little more diligent when it comes to my diabetes. That’s because hot weather can play some cruel tricks on a T1D’s body. What do I mean by that? Here’s five ways diabetes can be affected by hot weather.
Dehydration can lead to high blood sugar. Everyone knows that it’s important to stay hydrated when it’s hot out, but it might be less common knowledge that dehydration can directly affect blood sugar. There’s a scientific explanation for this: If not properly hydrated, the body sees an increase in blood glucose concentration because blood won’t flow as easily to the kidneys, making it difficult for the kidneys to get rid of excess glucose in urine. The best way to prevent this, naturally, is to drink plenty of water and monitor blood sugars.
Sunburn can drive up blood sugars. I’m very familiar with how a sunburn can result in higher blood sugars; in fact, just last week I was dealing with a particularly gnarly sunburn on my thighs and belly that not only made my numbers higher, but also really hurt. My skin was literally damaged, so the stress from the injury lead to retaliation from my blood sugar. Luckily, it only lasted about 48 hours, but those couple of days were challenging as I dealt with sticky highs that were practically resistant to insulin. And for the record, I DID apply sunscreen – numerous times – when I was at the beach. Next time, I’ll seek shade under the umbrella.
Sweat can make it difficult for devices to stick. I don’t know a single medical device that’s immune to prolonged exposure to moisture/water, but that doesn’t prevent me from spending as much time as I can outdoors/at the beach/by the pool in the summer. Thank goodness for Skin-Tac wipes and medical adhesive tapes that help preserve my precious pods and sensors!
“Sun-kissed skin so hot/We’ll melt your popsicle…and your insulin” – Katy Perry (with some help from Molly Johannes)
Insulin can overheat. There’s a reason why insulin vials come packaged in cartons with directions that specify what temperature insulin should stay at in order for it to be safe to use. Insulin can spoil easily when it reaches a certain temperature, so it’s important to store it in a cool place when the weather’s warm. I alternate between a mini portable cooler (that can hold 3 vials of insulin) and a pouch from FRIO – both do an excellent job at keeping my insulin cool.
Low blood sugars can occur more frequently. Summertime is prime time for outdoor activities that result in higher energy expenditure. So it’s no wonder that blood sugar tends to plummet in hot weather. Looking at it on the bright side, it’s an excuse to eat even more ice cream – but it also means that monitoring how I feel and checking blood sugars often is that much more important.
Regardless of the diabetes challenges it may cause, I love summer weather, and I know I’ll miss it the moment the first snowflake falls this year.
Read the following five sentences. Can you tell what’s wrong with them?
She’s a diabetic.
He’s testing his blood sugar right now.
Her diabetes is out of control!
Isn’t that a really bad blood sugar?
He suffers from diabetes.
Have you figured it out?
The language in those five sentences is extremely negative. “Bad,” “out of control,” and “suffers” are obviously gloomy and cynical words to use when referring to diabetes – you don’t need to be a wordsmith make that connection immediately. But what’s wrong with “diabetic” or “testing”? It’s the connotations around those words. Calling someone with diabetes a “diabetic” is labeling them with the disease and removing the actual person from the equation. Saying that a person with diabetes is “testing” their blood sugar makes it sound so…clinical. It also implies that the person could pass or fail the so-called test, adding pressure and guilt to the situation.
Choose your words wisely.
In my real-world, full-time job, I’m an editor, so it gives me great pleasure to amend those above sentences into more positive, empowering language:
She has diabetes.
He’s checking his blood sugar right now.
She’s having a tough time managing her diabetes.
How do you handle high or low blood sugar?
He lives with diabetes. (Or even better: He THRIVES with diabetes.)
Ah, much better. Never underestimate the power of words.
Last week, I wrote about some anxiety that I was feeling the day before I was due to see my endocrinologist. Now that the appointment has come and gone, I feel like I understand the reasons why I was so nervous…
Reason #1: Some part of me must’ve known that my A1c has gone up over the course of the last three months – it rose half a point, much to my dismay. I confessed to my doctor that I’ve been a little careless, particularly in the last month or so, when it comes to carb counting and healthy eating. Luckily, she wasn’t critical of me, but I almost wish that she’d reprimanded me in some way. It would’ve been the talking-to that I felt I deserved.
Reason #2: My endo permanently switched locations: She’s now based at the medical center that I used to go to when I was seeing a pediatric endocrinologist. I hadn’t been back there in about eight years, and boy, it brought back some unexpected emotions. I must admit that I had to hold back tears as I walked into the building. I don’t know why all the feelings hit me so hard, but I suspect that it might have been because of the flood of memories that flowed through my mind. It also symbolized the journey I’ve been on in just the last eight years of life with diabetes, in which I:
Transitioned from injections to a pump.
Stopped using Lantus.
Started using a Dexcom.
Improved my A1c/overall health significantly.
Decided to become a more active member in the diabetes community.
Those are some major changes, and the magnitude of them practically knocks me out as I think about the last 20 years I’ve had with diabetes.
Just making some awkward faces while I wait for my doctor. Also, I love that the exam room has a full-length mirror in it: It’s perfect for taking pictures/killing time while I wait!
Reason #3: I was meeting all sorts of new people, which is very nerve-wracking to an introverted extrovert like myself. I was used to the receptionists and nurses at the old location. I got to know them and vice versa. It made going to appointments a little easier. At this new/old location, though, I don’t know a soul except for my doctor. A reassuring smile or light conversation would’ve placated me on this visit, but perhaps those things will come in time.
Anyways, now that I’ve had time to think about the emotional aspects of this appointment…I’m going to switch gears and start doing the things that I need to do and that I am capable of doing in order to get my A1c back to where I want it. I know that I’ll get there. As my appointment wrapped up, I looked my endocrinologist in the eyes and promised her that the next time she saw me, I’d be down more than half a point. And I intend to fulfill that promise.
Hugging the Cactus 