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.
There are few word pairs I loathe more than “controlled” and “diabetes”.
How the hell can diabetes be “controlled”? It’s not a video game to be played with a controller. There’s no character selection or “start” button. And it most definitely can’t be shut off with the flick of a switch.
On the contrary, it’s my opinion that diabetes is a bit of a wild beast that can’t simply be tamed. It doesn’t care if you follow the same routine every single day – it’ll act up for no damn reason whenever it pleases, much to the dismay of a person dealing with it.
Diabetes will do what it wants, when it wants. It will wake you up in the middle of the night because of a low blood sugar. It can throw your whole day off track because you make your plans around it. Diabetes itself comes with so many variables, between the devices and the effectiveness of medication, that it can oscillate no matter how hard you try to keep it steady. How can something like that possibly be under control? People with diabetes, like me, are given tools that are intended to help manage diabetes, certainly, but we have yet to receive something that allows us to influence it completely.
If I had to take a stab at guessing what people thought “in control” diabetes looked at, it would be more than just the “perfect” flat-lined CGM graph. It would be more than going to bed each night and waking up every morning, having just enjoyed an uninterrupted, sound night of sleep. It would be more than having the freedom to make spur-of-the-moment choices regarding a daily routine or diet.
But for now, I’ve accepted that my diabetes is something I manage rather than control…but I also accept my refusal to let it control me.
Ahh, the holiday season…it’s been in full swing for just about a month now, and with that arrived a bevy of parties, potlucks, and poor dietary decisions. In a week, the new year will be here and it’ll bring a fresh start with it, but for now…I’m trying to find a way to make peace with all the indulgences I’ve enjoyed in the last several weeks.
Takeout Chinese food, pizza, homemade roasts, and baked goods galore are among the gamut of glutinous grub responsible for transforming me into a guilty gourmand over the course of the holidays. (Can I get a round of applause for that alliterative sentence?) I wish I could say that I had the willpower to resist the temptation of these foods that have been provided at the various holiday parties I’ve attended; alas, I couldn’t stop myself from noshing on them just as much as the other guests at these gatherings. A fair share of my fellow party attendees commiserated with me about diets flying out the window this time of year, but very few of them could understand that the fattening fare impacts more than just my waistline.
My blood sugars, of course, have been a victim of holiday feasting just as much as my size six jeans.
Truthfully, they’re not as terrible as they’ve been during past holiday seasons. But that doesn’t mean I’m satisfied with them, or okay with the fact that they tend to rise and crash at equally rapid paces when I eat too much of the carb-y stuff and correct accordingly with insulin. The roller coaster ride combined with the feeling that I’m turning into the Pillsbury dough girl is what I’m fed up with, and I’m trying to figure out a way to stop punishing myself for it. After all, a new year IS right around the corner, and like many others in the world, I can and should use it as a reason to start eating more mindfully and healthfully, leaving the dietary mistakes of 2018 in the past.
It’s definitely cliche, but I’ve got to get back into the routine and replace all the cookies and fancy chocolates I’ve been consuming with leafy veggies and lean proteins. It won’t be easy, but I know that it’ll be worth the improved blood sugars and looser pants that are bound to follow.
Diabetes Awareness Month may have only started a few days ago, but boy, has it been jam-packed with advocacy and awareness efforts so far! In fact, I think this is the most active year yet for most social media platforms. I’ve seen tons of different campaigns, hashtags, and posts that were all created especially for this month, and it’s absolutely wonderful to see such inspired content as well as high participation rates.
And I hope to keep the ball rolling on this! That’s why I’m sharing my #NoMoreFingerpricks post today. This campaign was launched by Dexcom and Beyond Type 1. Participants are encouraged to take a picture or video wearing the foam finger from Dexcom, or to draw an “X” on an actual finger (if they don’t have a foam finger). For every photo or video posted on Facebook/Instagram with an @Dexcom and #NoMoreFingerpricks, Dexcom will donate $1 to Beyond Type 1.
Yup, it’s that easy to do! And it’s exactly the kind of social media campaign that can catch on quickly. Recruit your family and friends to take photos and get posting! And be sure to teach them a couple of diabetes facts and what the whole #NoMoreFingerpricks hashtag is all about. For instance, you could mention that:
34% of people with T1D know nothing or little about CGM
80% of people with T1D still prick their fingers more than 3 times a day
96% of CGM users would recommend CGM
You could even direct inquiring minds to visit nomorefingerpricks.com to learn more about continuous glucose monitoring technology and this campaign.
So…what are you waiting for?! Draw an “X” or grab that foam finger and post your photo to educate, advocate, and celebrate living beyond!
I had a bit of a traumatizing experience at the airport a few weeks ago.
I travel fairly frequently – I’d estimate that I hop aboard a flight a dozen times or so per year. As a result, I’m well-versed in the TSA routine that goes down at every airport: Remove shoes/belts/items from pockets. Take laptops and electronic devices of similar size out of bags. Place 3-1-1 liquids in a visible spot. Let TSA agents know before stepping into the full-body scanner that I have T1D and wear a couple of devices. Step out of scanner and allow them to do a hand swab. Wait patiently for the results to come back clean, gather belongings, and move on to my gate.
It’s a very precise routine that I’ve come to anticipate and accept, so really, it’s no wonder that it was bad experience when it deviated sharply from the standard format on my last trip.
I was returning home from a long weekend in Washington, D.C. I queued myself up in the TSA line and when I got close enough to an agent, I let her know that I didn’t want to go through the full-body scanner, because I was wearing a medical device that couldn’t handle it. (The manual for my Dexcom G6 advises users to avoid full-body scanners and opt for pat-downs, metal detectors, or wands, as available. I’m a stickler for following the rules, so that’s why I stuck with the manual’s advice). I’ve had the pat-down before, and while I don’t love it, I knew it wouldn’t be intolerable.
As soon as another female agent was free to conduct the pat-down, I was waved over and subjected to the semi-embarrassing “free massage”. Once it was done, my hands were swabbed. If you aren’t familiar with the hand-swab process, it’s a protocol in which the TSA checks passengers’ hands for any traces of explosives. In other words? My swab always comes back clean.
Except this time, it didn’t. The machine dinged. This prompted a couple of TSA agents to consult one another before coming over to me and informing me that I’d have to wait an undisclosed period of time for another, higher-up female agent to come over, conduct a “more-thorough” pat-down, and forfeit my luggage for a closer inspection.
Deep down, I wasn’t worried because I knew that the more meticulous inspections would clear me for travel. But I couldn’t fight back against the anxiety that flooded throughout my body as I wondered how long I’d have to wait and how much more invasive this next pat-down would be. I struggled to conceal the tears that rolled down my cheeks as TSA agents seized my bags and rifled through them, ruining my careful packing techniques. I was humiliated, and practically had to beg them when I asked to see my cell phone and OmniPod PDM. (I could practically feel my blood sugar going up due to the stressful nature of the situation, so I wanted to check and correct it A.S.A.P.) It only got worse as I was pulled into a separate room and given a pat-down in which the agent actually pulled my pants away from my body to look down inside them, which is just as awful as it sounds. I know that they’re merely performing their job – I don’t fault them for that and appreciate that it’s far from glamorous – but it was horribly demeaning.
When I was finally told I could go, I wordlessly collected my belongings, fighting to shove them back into my suitcase. I made a beeline to the restroom to splash water on my face and calm down. As I waited to board my flight, curiosity took hold of me and I posted a poll on Twitter. I wanted to know if anyone else has ever had an experience like mine. Nearly 241 people answered my poll.
And I was fascinated by the results. There was no overwhelming majority; in fact, it was rather solidly split down the middle, with only a few more people reporting a negative experience with the TSA. Many of those people responded directly to my poll with tweets of their own that described their experiences:
They nearly ripped my son’s inset out of his thigh for his pump one time. Another time they took his bottle of insulin & tested it & I understand explosives come in liquid form but he was 8 years old. Another time they performed a very thorough and humiliating body pat down on me in order for him to bring his insulin on board.
I’ve never had a difficult experience w/TSA on any flights- international or domestic. They’ve all been very professional & understanding when I said I have an insulin pump/all supplies. I’m sorry you had a tough time.
My husband has to take my daughter through because I completely lose my shit on them. Every single time a hand swipe test. Unbelievable and stigmatizing.
Almost every single time and it infuriates me. They treat your supplies like you’re part of the drug cartel. One held up my bag and with so much attitude “excuse me? What is this?” And I said my medicine and another passenger screamed at the agent saying “you can’t do that!”
Same thing happened to me! They tore apart and destroyed so many of my supplies and I just watched helplessly while crying. If 29 million Americans have diabetes why is TSA so oblivious to what it looks like?!!
While these replies validated to me that I wasn’t overreacting, they also made me sad. Angry. Frustrated. Why is this a thing in some airports? Why isn’t there a better protocol in place for people with diabetes?
Perhaps the most irritating part of it all is that I don’t know for sure why this whole thing happened in the first place. I assumed that it was a fluke on the machine’s end, but after corroborating stories with so many other T1Ds, it’s got me wondering…was my diabetes a red flag of sorts to the agents? Did they think that my supplies were disguised and could be something harmful?
Again, I don’t want to discount the work that the TSA does to help keep travelers safe. I truly do appreciate it and I know that experiences vary at airports all across the world. But…we can do better. Traveling should be fun and exciting, not traumatizing.
Can you imagine having diabetes in the 14th – 17th centuries??? The answer to that is no, you probably cannot…because without modern medicine, it wouldn’t have been possible for a T1D to survive in the Renaissance. And ‘cuz, well y’know, the Black Plague was a thing back then and lots of people didn’t survive.
But fortunately, we’re living in the 21st century, which means we have access to all sorts of things that help us manage diabetes. Still waiting on that cure, though.
Where am I going with all this?
I wanted to recount my recent trip to a Renaissance festival, in which I spent a day taking care of my diabetes while jousting tournaments, Shakespearean performances, and drunken debaucheries took place all around. And you know what? It was easier than I thought it’d be.
Sure, I didn’t check my blood sugar with my meter as much as I should have. My inner germaphobe was reluctant to rely on my meter for accurate results, seeing as there weren’t really any hand-washing stations on the fairgrounds. (Remember, this is the Renaissance…things were a little grimier in those days.) I used hand sanitizer whenever it was available to me to keep my hands clean, but it was a bit of a challenge, especially when my mitts got caked in mud post-ax throwing.
Thankfully, I had my Dexcom G6 to help keep me on track as I ate my way through the fictional 16th century village. I was jazzed that several low-carb options were available to me; throughout the day, I snacked on a giant turkey leg, a Scotch egg, and spiced nuts. Maybe a “diabetes-friendly” diet would’ve been easy to follow in the Renaissance? Though I will admit that I gave in to temptation and ate (devoured) a slice of cheesecake. On a stick. And dipped in chocolate. Not low carb, but super YUM.
So even though my diet was far from nutritious at the ye olde faire, I think that all the walking around and sharp-objects-throwing kept my blood sugar in check, much to my relief. My experience at the fest is just another example of how diabetes won’t prevent me from living life to the fullest, whether it’s in the reality of 2018 or the fantasy of the 16th century.
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.