About 4 months ago, I left my office during lunch to go celebrity stalk the step and repeat at Fashion Week because it was close by and because I’m a huge loser. Anyway, I was puttering around for about 30 minutes then stopped to grab a salad on the way back. While I was ordering my lunch, I checked Dex as I do (15 times an hour), and I was 90 and trending down.
But I was not 90. I felt this strange cloud of ominous wiggles floating up from my toes and into my brain. My face and arms felt magnetized towards the ground. My head was foggy. So, just in case this was a low and not my normal “waiting in a long line in a small place” anxiety, I grabbed a Snapple. I read my cap fact, and slugged 1/3 of the bottle. 13.3 grams of carbs. I love any excuse to drink a real Snapple. On the walk, my feet felt like I was wearing those crazy wooden clogs from Holland. Maybe I’m just dehydrated. In the elevator, my vision was like looking into an empty Google cardboard. Everything was slightly distorted. The elevator lights were causing weird floaties and flares to dance across my peripheral. I almost felt high. Like drugs high. Not sugar high. I was 84% sure my legs were slowly cooking from raw pasta to perfect al dente fettuccini beneath me.
The elevator doors opened to the 25th floor, and I felt completely out of my own body. I pawed my way back to my desk like a drunk sloth, practically dragging my face along the wall. My knees were slowly liquefying in my legs, and my hairline on the back of my neck was soaked with sweat. Nothing hurt, but my eyes were fighting to stay forward. My head and neck were starting to clench, and my mouth tasted weird.
I stumbled into my seat, tears welling up in my eyes. I was really out of it. Sweating. Confused. Fumbling for my kit. My Dex now said 75. I thought, “No fucking chance, man.”
I tested, and there she was in all her glory: 38.
I have never felt an adrenaline rush like that in my life. Fight or flight mode is so real when you see a number that low. But I did what I had to do, and then played everybody’s favorite game: hurry up and wait. Slowly, the electricity blasting through my chest started to subside. All I could feel at this point was tired and humiliated. What a scene I had caused. An episode like this hasn’t historically something I love publicizing to my poor coworkers. I also felt vulnerable because this was a terrifying new place to be. 38, are you kidding me? How? Was I about to have a seizure when my neck and jaw tensed up like that? I think I was. Holy shit, I’ve never had a seizure before and I never ever want to. I pinged my diabetic colleague in a different department and told him my number. He said, “Just sit still and breathe. You’re going to be okay. Don’t focus on the threat of a seizure, you’re out of the woods now. Just try and calm yourself down.” He was right, but I couldn’t help but feel a brutal, face-slapping reminder that what I carry around inside of my body is a big deal. A really big deal. And not only that, but it’s dangerous big deal.
Thank God for my spidey sense to grab that Snapple, or the low could have ended much lower. It was also nice knowing my co-workers sprung into action and knew what to do. Maybe all my years of rambling and over-sharing have paid off. Because of that, physically, I recovered quickly. But psychologically, what was left in this low’s path was far more destructive than I could have anticipated.
I was now afraid of my own body.
Part of how I cope with having diabetes is by telling myself that this thing silently looming inside of me isn’t that dangerous. It’s consequential, and it’s frustrating, but it’s not dangerous. I tell myself that if I am hyper-aware of its existence and role in my life, and if I nurture it the way I nurture the rest of my body, I’ll be okay, right? I live by my own rule that if I let myself succumb to a fear of my own disease, I will never live a full, happy life. But when this happened, diabetes sobered me right up. Maybe my whole message of “Me first, diabetes second”, isn’t possible after all? Maybe diabetes is in the driver’s seat and I’m not even a passenger, I’m someone from an episode of the Sopranos tied up in the trunk. Everything I’ve ever preached, spoken about, written down, and blabbered on about on Instagram felt like a lie.
In the past 4 months, I’ve developed some ridiculously anxious habits that all ladder back to the low. Because the terror I felt that day is still fresh enough to remember every detail, every time I bolus, I get gun shy. I’m totally unwilling to pre-bolus. I second guess all my carb counts. I worry that if I move around while there’s active insulin in me, I’ll drop to the ground. I hesitate to eat things that have over 30 grams of carbohydrates because the thought of having more than 3 units in me feels as scary as jumping off the Empire State Building. I avoid that specific deli I was in that day, my obsession with checking my Dexcom is borderline obsessive compulsive, so much so that my workouts, especially spin, have taken a big hit. I give myself phantom lows at least once a day. I talk about nothing other than my fear of being low. I even cry when I see a low coming. The other night, I was 150 after dinner, with double arrows down and 3.8 units in my body. To handle it, I literally got in bed to snuggle with an entire bottle of OJ and started bawling my eyes out. Poor Sean just sat hopelessly at the foot of the bed, the rescued bottle of OJ in his hand that I had taken hostage, really wishing he could get back to his video game zen space he’d been in moments before. “You have had diabetes for 12 years, at this point you’ve probably had 100 lows. Why are you letting this one low make you question everything you know?” Great question, dude. My answer was, “My body broke its own trust and I just don’t know what to do now.” But 5 minutes later, low and behold, I flattened out at shiny, perfect 125. The relief I felt was euphoric and I also realized he was right. I know what I was doing. I know how to bolus. I know how to test. I know what my body tries to tell me most of the time. So why, oh whyyyyy was this one low the one that I was letting stick with me for so long?
I was so sick of feeling like shit, and it was conveniently New Years. So you can probably guess what my resolution was: fix the madness.
I know a lot of you have gone through similar ebbs and flows with your diabetes. Anxiety is a really real thing, and for me, it’s there no matter what my diabetes is doing. However, there simple, effective things you can adjust or change to help alleviate some of the pressure and darkness from your crazy racing thoughts.
Here’s what I’ve been up to lately.
- Identifying patterns
The Problem: Around 6:45 every night, I trend down. All the stress and adrenaline from the day wears off, and I tend to drop significantly until close to 8 pm no matter what. Also, when I workout at night, I walk almost a mile to get to the studio. By the time I arrive, odds are good that I’ll be straight arrow down.
The Solution: Make sure my last bolus for the day is no later than 4 pm. That way, I will have little to no active insulin on board when I head into my night. If I’m trending low with no insulin on my bod, it’s a hell of a lot easier to get it back up again and keep it up while I’m on the bike, the subway, or walking home. This will help me get my confidence back up so that I can go longer periods of time without thinking about it, or checking my Dex every 4.2 minutes, praying to the glucose gods that mine stays steady during the activities I enjoy the most.
- Adjusting my alarms
The Problem: My phone is primarily set to vibrate. And so is my pump. So when I have the vibrations from a low res, or bolus completion, etc., I’m hearing and feeling the same thing as when I get an email, a text, high glucose alert, low glucose alert, a fall or rise rate alert and so on and so forth into vibration infinity. Long story short, it’s too much. When I get bazillions of vibrations every few minutes with the possibility of being anything from an email from my grandma to a super disruptive and urgent blood sugar situation, things get very overwhelming. Now anytime something vibrates, I panic. Like, stomach flips level of freak out. It’s like PTSD but the diabetes version.The Solution: Because I’m immediately triggered by all these vibrating devices, I had the geeeeenius idea to switch up my alarms. This way, an email is JUST an email, and a text is JUST a text. Now when I hear my phone vibrate, I’ll know that’s all it is, not a blood sugar situation. And, in the off-chance that it is, I’m training myself to react to a totally different set of sounds.
- Getting Some Space from Dex
The Problem: I’m addicted. I check non-stop. I’ve gotten so incredibly attached to the damn thing that it gives me phantom lows and highs all the time. Watching every trend up and down all day every day was getting really taxing and I realized it was not helping my diabetes routine, it was hurting it. After the bad low, it was like I was just waiting for it to tell me more bad news. And as the year came to an end, I realized that mentality was taking me completely away from my experiences and happiness. I had lost trust in myself, and was practically willing disaster to strike at any moment. It was time to step awaaaay from the Dexcom.The Solution: Dex’s battery died right before a comedy show last week, and I said to it, “When you really love someone, you have to let them go. Goodnight, sweet prince.” I’ve been Dex free for 6 days, and they’ve been some of the happiest, anxiety-free days of my last 4 months. By the time I get my new transmitter in the mail, I’m hoping that I will have had enough space from him to get back into a healthy relationship with that gosh darn omnipresent graph.
- Refreshing My Glucagon & Getting A Bracelet
The Problem: I had a guilty conscience knowing that my Glucagon was super expired. Not to mention I’d heard horror stories about how much they were costing people these days. So I told myself I’d be “fine” without one. But I realized I was messing with fire, and that was ridiculously counter-intuitive when the cause of the anxiety was um…a low. Also don’t wear a medical ID. I have my phone’s emergency thingy all filled out so if something were to happen to me, and someone was tech savvy enough to know all that information is stored there, then I’d be fine. But that’s a huge if.
The Solution: When I met with my new Endo, the first thing I asked for was a Glucagon. It cost $30 with insurance and it was the best $30 I’ve ever spent. Now the tricky part: figure out how to use it, and teach other people how to use it. In terms of a bracelet, I’m still working on that, but I have my eyes set on a Poppy bracelet.
- Switching Up My Doctor
The Problem: I’ve never had a good endocrinologist. But I’ve never been terribly inspired to go out there and hunt one down. And for years, I’ve also had some weird mental block telling me that I don’t really need a great doctor because what do I really need from them other than A1c tests prescriptions, anyway? Then this low hit, and I panicked. I need a good doctor that I can lean on and trust.The Solution: 2016 was the year of meeting other people with diabetes in real life. And one thing that comes with meeting real diabetics in the wild, is that you get to talk shop. After the same handful of NYC docs came up repeatedly, it was time to make a few phone calls, and make it happen. It has been so rewarding making a commitment to right the sinking ship of disappointing relationships with the doctor folks. I’m really hoping this one works out.
- Limiting My Time On The Instagramz
The Problem: Though creating a vibrant and positive community with The Sugars has been incredibly fulfilling and rewarding, the past month I’ve scaled way back. I was completely fried, and the thought of spending more time around diabetes talk when my diabetes mind was so far from right was making everything harder for me. I was also getting strange vibes from some of the posts people out there were putting up. I didn’t think A1c’s and flat-lined Dexcom graphs were a competition – but maybe they are?The Solution: Step away from the phone. I had officially given it too much power between my Instagram world and my Dexcom problems. However, it’s been very simple, and very impactful. But I’m feeling less overwhelmed and less in the weeds, and I’m sure I’ll be back to love on you all again very, very soon.
That low blood sugar back in September was such a little asshole. It scared the hell out of me. It took me off my game. It slashed my confidence in half. It made me jumpy, on edge, and afraid of my own shadow. But I’m workin’ my tail off to get back out there.
Last week, I was talking to my other cyborg friend, Jason, who has Hemophilia. Hemophilia is a clotting disorder, and similarly to diabetes, it’s pretty much invisible… until it’s not. A few months ago, Jay had a bad bleed caused by riding in back to back spin classes. When we work out, our muscle fibers tear a little bit (hence why we get sore), but sometimes for Hemophiliacs, this can cause more serious internal bleeding. Sounds terrifying, but Jay handles it like a champ. He took a few days to heal and recover, and I said to him naively, “I’m so sorry that happened to you, it probably makes you dread getting back on a bike, huh?” assuming that, like me, every low makes me gun shy. But his response blew me away. “Actually, it’s the opposite. I have to face the fear of a bleed in order to get stronger. The healthier I am physically, the healthier I am disease-wise.”
So there you have it, folks. The story of how something really scary screwed me up, and forced me to take a look in the mirror and figure some shit out. But I made a commitment to course correct, and it’s already working. I am confident that all of these heeby-jeebies will work themselves out by the time I get to the good stuff I have planned this year. I have a super 2017 lined up for myself, filled with travel and outdoor adventures, and I’ll be some sorry if I ignore what’s going on in my mind, only to be tripped up by what’s going on in my body. Mind > Matter, baby.
If your diabetes is testing you right now, knownthat you’re not alone. The 6 things I listed above are only 6 things – there are likely hundreds of ways you can get through the challenges your facing. And remember, this is my personal account. Please don’t change your insulin dosages, or make any truly medical changes without consulting your doc first, mmmmkay? Mmmk.
Keep fighting the good fight, ya’ll. Ta ta!