All my life, I’ve been told that I should do what I can to keep my A1c levels between 6 and 6.5. This is the “ideal” range, the sort of long-term goal I should bear in mind on a daily basis.
So when my primary care doctor suggested that an A1c of 7 to 8 might be a more realistic, sustainable, and healthy zone, my jaw dropped to the floor.
He explained his reasoning for saying such a thing: Since people with diabetes obviously have different needs when compared to people without diabetes, it’s not entirely logical to expect a person with diabetes to maintain an A1c that they might have with a functioning pancreas. He said that as time goes on, it could affect cognitive abilities.
And then he said that this was the range that would be recommended to a person with type 2 diabetes – there’s no new research that indicates any difference in desirable A1c levels for a person with type 1 diabetes, so, as my doctor said, I should continue to aim for 6 to 6.5.
This was such a WTF moment for me, for a couple of reasons.
One being that I had NO IDEA why he was saying this to me. He built up this whole explanation as to what the “new recommended A1c” is, only to inform me at the very end that it was only safely applicable to people with T2D at this time. Was he confused? Did he forget that I have type one for a minute there?
The other reason I was flabbergasted by this little discussion was that we hardly ever go into detail when it comes into my diabetes. In fact, he didn’t even ask me when my last A1c test was, or any questions regarding my insulin pump/CGM. He just asked the standard “how is your diabetes” question, to which I replied with a super-lengthy, not-at-all vague response: “good”. He did put orders in for the standard array of tests that I take for each annual physical, which would inform him of my blood sugar at that moment in time, as well as my current A1c. But it was nothing that I’d be talking to him about during that appointment because the results wouldn’t be available until late in the day. So yeah, I found the whole thing to be pretty bizarre and mildly misleading.
Coincidentally, I’ll be seeing my endocrinologist in a few weeks, and let’s be real here: She’s the one doctor who can best advise me when it comes to diabetes treatments and protocols. So I’ll be sticking with her recommended A1c range for me, which I have a feeling won’t be any different from what I’ve been told all these years with diabetes.
In the last 21 years of diabetes, my low symptoms have been pretty predictable and easily recognizable: shakiness, sweating, dizziness, and sluggishness are all signs that I need some sugar, stat.
But lately, I’ve started to experience one brand-new and totally weird low blood sugar symptom. I’ve decided to dub it “fuzzy tongue”.
I don’t know how else to describe it other than that it feels like my tongue and lips are covered in a terrycloth towel as my blood sugar starts to fall to a certain level, usually 75 mg/dL or lower. Simultaneously, it’s a numb and tingly sensation that feels so disorienting and makes the process of chewing glucose tablets or drinking juice a little more difficult, because it feels weird to eat or drink when my entire mouth feels like it’s covered in cloth.
In fact, the first time it happened, I took to Twitter to ask the rest of the DOC if there was anyone else who had experienced something like that before. And I was comforted by the many responses I got back that assured me that I wasn’t alone in feeling this strange symptom:
“Yes, from certain lows. Sometimes I feel like my [whole] body is buzzing and fuzzy, if not fizzy. Other times, it’s like my body says, “BTDT! Got the glucose tabs! Move on!”
“YES! This is a new symptom for me too (after 17 years of treating lows)..Thought I was allergic to honey the first time.”
“This is a common one for me. Tongue and lips. I hate it”
“Sometimes I get tingly lips or tingly fingers!”
“That’s almost exclusively how I can tell that I’m low”
“YES! If it’s a prolonged low, I get tingly lips and tongue. It’s super weird and really uncomfortable.”
“I get more of the tingling/partial numbness in the lips (‘fuzziness,’ I suppose) that some have described. Usually this occurs with a bad low (under 50 mg/dL).”
Those are just a few of the replies that my initial tweet received. I found these particularly interesting, though, because one person identified it as a new symptom, too, and others implied that it’s always been an indicator of low blood sugar that’s more likely to occur with “bad” lows. In addition to helping me feel a bit more normal about the discovery of my new low symptom, I also found this to be an example of the ways in which the DOC is uniquely unified. To an outsider, this whole Twitter thread probably makes zero sense and comes across as bizarre. But to someone part of the DOC, it’s just another conversation that brings T1Ds trying to get to the bottom of a ‘betes mystery together.
So even though “fuzzy tongue” is uncomfortable, I’m glad to know I’m not the only T1D who’s felt it…and I’m very glad that my body has found another way to alert me to a low blood sugar, especially since it’s a way that makes me want to correct it more quickly than ever before.
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…
…that one time in college when some random kid sitting near me in class said that having diabetes means “you’re screwed”. In other words, you can’t live with it, it’s a death sentence.
Before I talk about how I responded to that, I’ll provide some context. It was my freshman or sophomore year of college. I was in a discussion group for my Nutrition 101 seminar. It was early enough in my college career that I still felt painfully shy around most of my classmates, unless they happened to live in my dorm or I had known them in high school (even though I went to a college with an undergraduate population of more than 20,000, I’d still occasionally encounter a high school classmate – it’s a small world after all).
But when it comes to diabetes…well, I have a reputation for not being able to shut up about it. So when it inevitably came up over the course of the Nutrition class, and the teacher’s assistant asked us to define it, I felt a natural impulse to say everything I knew about it. I had to suppress it, though, because my fear of raising my hand in class was stronger than my desire to spew out an overly in-depth definition of diabetes.
So I let someone else answer the question, noting what was right and wrong about the response. As the T.A. launched into her notes on diabetes and nutrition, I overheard a muttered, ignorant comment from the kid next to me:
If you have diabetes, that means you’re screwed!
While the dude sitting next to him laughed, I felt instant rage surge throughout my body. Without even thinking, I blurted out loud, just audibly enough for him to hear, “No, having diabetes does not mean you’re screwed. Whether you have type 1 or type 2, you can live a perfectly normal life with it. I would know, I have type 1.” I felt my face flush as I turned my attention back to the oblivious T.A. in the front of the room. In the corner of my eye, I saw that the kid was sitting there, mouth slightly agape, probably surprised that the quiet girl in discussion group spoke up to shut down his idiotic way of thinking.
It’s been several years since I was in this particular class, and I don’t remember much of the materials that were taught in it. But I do remember this exchange. It stands out to me because it’s a reminder of how far we’ve got to go as a society to defeat diabetes stigma and prove that you can do more than survive with diabetes – you can thrive with it.
What is LDM? According to my mother, it stands for Lovely Diabetes Mystery. The “lovely”, of course, is sarcastic, whereas the “diabetes” and “mystery” relate to a random, unforeseen diabetes medical incident – which occurred to me on Sunday, October 7th.
I woke up that morning with some abdominal pain. I rolled over soon after waking to check my CGM, and was startled to see that I’d be in the 300s for most of the night as I was sleeping. I quickly bolused for it using my PDM, and shut my eyes, hoping to get some more rest and to wake up again without stomach discomfort.
No such luck. About an hour later, I opened my eyes and looked at my PDM again, and I had barely come down. I tested to confirm, and sure enough, I’d only gone down a few points. I was worried, which was exacerbated by the weird nausea I was having. Could this be a sign of something more serious?
My mother convinced me to do a manual injection with a syringe. We both figured that that would help bring my numbers down faster, and that if I started coming down quickly, then it could mean that the pod I had just applied the day before was not working properly. We agreed that I should probably change it, to err on the side of caution.
However, I didn’t get to change my pod until much later in the day. That’s because of what happened soon after I took my manual injection.
I went to use the bathroom, certain that the churning of my stomach meant that I was about to be sick. I was standing in front of the toilet when I started sweating – profusely. On top of that, my vision went all fuzzy, and I felt totally disoriented. I knew something was wrong, so I called out for help.
My mom raced into the bathroom to find me seated on the floor, dripping in sweat. I placed myself on the floor deliberately because I was worried I might pass out and injure myself. She started cooling me down with a wet facecloth, and searched through the drawers to find a thermometer to check my temperature. She also grabbed her test kit and my lancing device, because naturally, we both assumed that perhaps my blood sugar was dropping rapidly from the insulin injection, and it might be a hypoglycemic event.
But when we checked my blood sugar, I was still in the high 200s. I was pretty scared at this point and just wanted the sweating to stop and for my vision to clear. That’s when my dad came in and made the executive decision to call an ambulance for me.
A police officer, three firefighters, and two EMTs showed up my house. I answered questions in my confused state. My vision restored and the sweating stopped, but I still felt weak and woozy. They put me into the ambulance. I was given an IV bag and medication for the nausea. It was my first time in an ambulance and it was not exciting, just weird. I didn’t like riding backwards or experiencing the twists and turns along the way.
We arrive to the hospital. I’m whisked away into the ER. I answer a series of questions from various medical students and nurses and doctors. They draw blood for tests. I give them a urine sample for more testing. I keep on explaining the concept of my OmniPod to each one of them. No one seems to have seen it before, besides one med student who has a sister who works for Insulet. Small world!
We monitor my blood sugar closely. My tests come back normal. I eat my first foods for the day around 2 P.M.: sugar-free jello and two hard-boiled eggs. Yum…
I get an injection of insulin at the hospital. We don’t have a vial of Humalog with us – it was the one thing we forgot to grab from the house. But my dad drives home to retrieve it so I can change my pod at the hospital. My mom does it for me. I feel helpless.
The old pod comes off and we notice a definite bend in the cannula. Okay. One thing explained. I wasn’t receiving my full insulin dosages due to the bend, and unfortunately, I have no way of knowing how much insulin I was truly receiving. All I know is that it wasn’t enough, and that’s why I was running high.
I receive a diagnosis: vasovagal syncope, or pre-syncope. It’s explained to me, but I still don’t really get it. So I text my best friend, who is also a nurse. She tells me that it’s very common and can be triggered by a variety of things. The pre-syncope aspect makes more sense to me, seeing as I never truly passed out.
I’m discharged and feel so very tired. It was a long day. The following days are filled with follow-ups and message exchanges between myself, my endocrinologist, and my primary care physician. My healthcare team and I think that we come up with a plausible explanation for the hullabaloo: My body knew something was wrong. It knew that my blood sugar was abnormally high, and it knew to send signals to me that I needed to take care of it. Hence, the abdominal pain. My dehydrated state exacerbated things, and when I started sweating and lost more fluids, it was a lot for my body to experience.
Sheesh. What an ordeal. Like any diabetes-related experience, it taught me a lot, but I certainly don’t want anything like that to happen again. Shout-out to the healthcare professionals, but especially my parents, for taking damn good care of me throughout the whole episode. You’re the bomb diggity.
One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.
This month’s favorite thing is so damn obvious that it’s kind of shocking I haven’t written about it yet on the blog: my OmniPod insulin pump.
I love the friggen’ thing.
I don’t know if it’s because pumping works better for me in general over multiple daily injections (MDIs), or if it’s because the OmniPod is simply the perfect pump for me. Honestly, it’s probably a combination of the two. I love how convenient it is – I can deliver insulin any time, any place, I don’t have to worry about tubing getting caught on random objects, and it lasts me for three full days (of course, only if it’s working properly…I’d estimate that it does about 90% of the time). And I love that my dosages are so much more precise compared to how they used to be when I was doing MDIs. It gives me more control, knowing that I can dose in .05 increments according to my current blood sugar levels and carbohydrate intakes.
However, it is merely another piece of diabetes technology, meaning that it does have some flaws. Sometimes pods fail for the silliest reasons, such as coming into contact with static electricity. And other times pods don’t work for no damn good reason at all, without giving the user proper notice (in the case of bent cannulas, something I recently encountered).
But for the vast majority of the time, I love my OmniPod. I’m still surprised to how quickly I adjusted to the system – the first week or two was tough, but then it was relatively smooth sailing after that period. I think it was easy for me to get used to another wearable device, because I’d already been wearing my Dexcom for a couple years by the time I got my OmniPod.
Will I wear my OmniPod for many years to come? Or will I want to switch things up and give another pump a try? Only time will tell, but for now, I think I’ll stick with what I know best in the world of insulin pumping.
I’d only been wearing my new pod for about an hour when my arm brushed up in exactly the wrong way against a chair. Riiiiiiiip!
My pod tore right off – not from my arm, but it lifted up from the adhesive that it was glued to and dangled precariously from the still-intact adhesive stuck to my arm.
After cursing loudly, I asked my mother for her opinion. I wanted to know if she could see the cannula, because that was the component that made me most concerned. As long as the cannula was still stuck under my skin and delivering insulin, it shouldn’t matter that my pod was a little loose – right?
She tried to peek under and around my site, but it was virtually impossible to tell whether the cannula was where it should be. I thought about it for a few moments, and decided that it would be wise to just change out the pod. The notion of tossing one that had only been in use for an hour was unappealing to me, but I know myself pretty well, and I know for damn sure that I would’ve been super paranoid about the pod functioning properly for the following 72 hours. I also figured that it couldn’t hurt to try calling Insulet to see if they would replace the kaput pod. The odds were slim, but why not try?
So after I changed my pod, I dialed up Insulet and described the situation to the customer support representative. And…I got a replacement! I was pleasantly surprised by the rep’s empathy towards the situation and how easy it was to get my replacement. She reaffirmed that I did the right thing, noting that if she’d been in my shoes, she would have called it in, too. It goes to show that when in doubt, change the pod – and don’t hesitate to call for a replacement.
I write a blog about it. I vent to family about it. I almost always casually mention it to new people that I meet.
I have multiple social media profiles dedicated to it. I own several t-shirts that identify me as a person with diabetes.
It’s the first thing I think about in the morning when I wake up, and the last thing I think about before I fall asleep at night.
And yet, sometimes people complain – jokingly and seriously – that I talk about it too much.
Of course I do! I totally own up to that fact. But think about it…
Doesn’t it make sense that I talk about it so much?
It affects the most mundane decisions that I make on a daily basis. It affects my mood. It affects my body. It affects the foods I consume. It affects what I carry in my purse each day and what I pack in my luggage on vacations. It affects my finances and my gym routine and the doctors I have to see.
If someone thinks I talk too much about my diabetes, then I’d like them to understand this:
Talking about diabetes spreads awareness and saves lives.
Bold, italicized, and underlined so the message and its significance is clear. Too many people in this world just don’t understand type 1 diabetes. They don’t realize how dangerous it can be, or how it is managed. In my personal experience, being open with others, answering their questions, and dispelling diabetes myths has resulted in nothing but positive outcomes.
It’s even helped people I know save a life, because they knew what to do when a T1D close to them was experiencing a hypoglycemic event.
All because I “talked too much” about diabetes.
With that in mind…you can bet that I won’t be shutting up about it any time soon.
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.
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.
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.