27 units. That’s exactly how many units of Humalog were left in my pod, and I had no choice but to literally throw them away. My pod was expired – it had been for 8 hours – and to my knowledge, 8 hours after a pod expires, it will cease working entirely.
I kept the pod on those 8 extra hours because I couldn’t bear the thought of wasting insulin.
It’s a strange, messed up game that I played. I was taking a bit of a risk by wearing my pod for so long after it expired. After all, it’s just a piece of technology, and it can sometimes be difficult to know whether or not it’s working properly when it’s brand new, let alone within the window of expiration. But this is the game that I have to play, along with so many other people with diabetes, because insulin is precious.
With that in mind, tell me…would you feel comfortable throwing away even one single unit of it?
One could argue that maybe I could’ve tried to extract the 27 units from the old pod and reuse it in a new one – but to me, that’s an even more dangerous game to play. I have no clue whether that’s safe, or if there’s too much risk involved with germs and cross-contamination. Maybe I’m just paranoid, but when it comes to my health, I have to be.
So as much as it pained me to be unable to use every last drop of insulin, I made the only viable choice for me and disposed of 27 units of Humalog.
27 units, 16 units, 3 unit, 1 unit…no matter what the quantity is here, every last drop of insulin is invaluable.
When will we see change? Is it really too much to ask for insulin to be affordable to all?
It seems like everywhere I go these days, there’s a cactus. (Or more often than not, cacti.) They appear in practically every form: I’ve spotted t-shirts, erasers, mugs, earrings, pool floats, and even stringed lights bearing the barbed plant’s likeness. The popularity spike of the cactus collided, by total coincidence, with the debut of my blog.
I’ve rapidly amassed a small collection of cactus items in the past year and a half, with no signs of slowing down. It’s certainly made it easier to represent my brand at all times, without even really trying. And it’s caused my family and friends to associate cacti with me – it always makes me smile when someone spots a cactus in their travels and lets me know that it made them think of me.
But even better, the cactus has spurned creativity in some of my friends who have been especially supportive of my blog and its mission since its incarnation.
Hence, The Cactus Corner – a little stretch of shelf space devoted to some of the cacti creations that my friends have made for me in honor of my life with diabetes as documented through this blog. There’s a cheerful, polka-dot-potted cactus that my friend hand-stitched in one section, and a painting of a blooming cactus set against a lovely pink background. Also pictured is a painfully cute pin that I’ve attached to my meter case – a portable cactus that I carry everywhere with me, along with all my diabetes supplies, as a reminder of my blog and of the diabetes obstacles I’ve overcome over the years.
The Cactus Corner is small and humble, but it represents so much to me. It is tangible evidence of the friendships I’ve been blessed with in life. It’s also symbolic of how I’ve chosen to embrace diabetes – pricks and all – for what it is.
So as my Cactus Corner continues to grow and thrive, I will, too.
A few short days ago, I made the move from Massachusetts to Virginia…and just as I predicted, the whole process has been emotionally draining. I’ve cried more times than I can count. I’ve busted my butt trying to get settled as quickly as possible. I’ve been eating poorly as a way to cope with my emotions. And my blood sugars have been all over the place as a result…again, just as I predicted, but still a bit disheartening.
I knew to expect some diabetes turbulence from the get-go. After all, a seven-hour car ride doesn’t exactly bode well for anyone’s blood sugar. But surprisingly, the drive to Virginia was probably when my blood sugar was most stable. I was snacking a little (okay, a lot) on the drive because it gave me something to do other than cry and talk unintelligibly to my boyfriend (my trusty driver) and it was far from healthy snacks…think fast food breakfast sandwich, Reese’s cups, and trail mix. Could’ve been worse, could’ve been a whole lot better. I think that because I was well aware of the high carb content of my snacks of choice, it motivated me to stay on top of my blood sugars and give myself micro-boluses as needed.
So that was all well and good.
Then came the actually moving-in process.
Box after box and bag after bag were transported from the car, up three flights of stairs, and down a long hallway. It’s no wonder that I went a little low from all that back-and-forth, though I did think that riding the elevator as needed would’ve prevented too much of a drop. And if I could go back in time, I’d like to address the day that I took off from work to do the bulk of my unpacking and adjust my temporary basal settings to something like a 50% decrease for six hours or so. That’s because as I sorted through clothing, emptied boxes, and organized all of my possessions, my blood sugar just did not want to stay put at a comfortable level. Over the course of the very long day that I spent unpacking, my blood sugar dropped low enough that I had to stop what I was doing to eat three times. It felt like I was constantly stuffing my face with food, which was frustrating and the last thing I wanted when all I desired was to get settled.
That’s the physical component of moving – a lot of labor; more specifically, lifting, tidying, hanging, folding, unfolding, and if you’re me, cursing.
But there’s an emotional side to it, too, that I would guess affected my blood sugar just as much as the physical aspect did.
I’ll be honest: Tears were shed. Anxiety felt like it would swallow me whole at points. Doubts ran through my mind as I wondered whether I was strong enough to be so far away from family and friends. I was feeling – and am still feeling, TBH – so many different emotional swings that I am fairly certain that I can blame my blood sugar swings on them.
I’ve said it before and I’ll say it again: I know I need to give myself time to adjust. I’ve got to take it day by day, hour by hour, moment by moment. I need to let myself feel the way that I feel and remember to be kind to myself, especially where diabetes is concerned.
Low blood sugars in the middle of the night are far from pleasant. But they’re especially grating when you’re just trying to have a sleepover with your best friends and your CGM alarms loudly and urgently, rousing more than just me from a peaceful slumber.
Dammit, diabetes…you’ve done it again.
I don’t know how or why the low happened. I went to bed around 1 A.M. – we had stayed up late talking, drinking wine, and eating snacks – and at that time, my blood sugar was 156. You can’t get much better than that, and it felt even sweeter because we’d eaten pizza for dinner earlier in the evening.
I thought I’d be fine overnight. I might come down a smidgen due to the unit and a half I took to cover a slice of fabulous flour-less chocolate cake (utterly heavenly), but I made the assumption that I wouldn’t come crashing down.
I should know by now…never assume with diabetes.
So it happened at about a quarter of four in the morning – a witching hour, in my mind. I woke to the frantic buzz buzz buzzing of my CGM and quickly acknowledged it, then reached for my tube of glucose tablets. I did it as silently as I could, seeing as I was sharing the room space with my three gal pals. From what I could tell, my super slow glucose tablet chewing didn’t even cause my friends to stir. It seemed that I’d successfully managed to avoid waking anyone up, thank goodness.
I was just starting to fall back into a doze when the frantic low CGM alarm blared – BEEP beep BEEP beep BEEEEEEEEEEEP. Ugh! Upon hearing the first beep I snatched up my receiver, silenced the alarm, and scooped up my test kit and my phone. I tiptoed out of the bedroom from which we were all nesting to the living room, where I searched through my backpack for the Skittles I’d purchased earlier in the day…because that’s right, this 3:45 low blood sugar hadn’t been my first in the last twelve-hour window of time.
I plopped myself on the couch and started furiously chewing Skittles. I remember looking out to the sliding glass doors and to the balcony and to the parking lot and then finally up to the sky to see the moon shining brightly at me. It was positively dazzling, yet infuriating with its cheerful gleam. I wanted to yell at it to stop looking so happy. I muttered to myself, “this sucks,” and reclined a bit on the couch while I waited to come up from the low.
Everything was fine within 15 minutes. I was on my way up and could safely go back to bed. And again, I congratulated myself for not waking anyone up.
Or so I thought.
“Did anyone hear my CGM go off in the middle of the night?” I asked my girlfriends, approximately six hours after the incident when we were all awake and about to head out to breakfast.
“Yes! I was wondering what that loud, aggressive noise was,” said one. I cringed, an apology lingering on the tip of my tongue, when she continued with an “are you okay? Don’t worry about the noise, I fell back asleep soon after.”
I was grateful for her reassurance, but also for her concern. It felt good to know that ultimately, she didn’t give (apologies for language) two shits about the actual sound that my low blood sugar caused, she was just worried that I recovered from it okay and could get back to sleep soon after.
I smiled to myself. Hours before, I’d been cursing the moon for merely existing and dealing with an annoying, random low blood sugar. But now, I was cruising at a great morning BG and I was on my way to get a delicious breakfast with my gal pals. Diabetes has its moments, but I sure as heck appreciate it when it cooperates during the ones that matter most. So in hindsight, the 3:45 A.M. low was nothing more than a temporary annoyance, and I was just glad that the worst thing it did was interrupt my sleep (and mine alone) for 10 minutes rather than ruin actual precious time spent with my friends.
So Valentine’s Day is tomorrow. Perhaps you loathe the holiday of love and celebrate it solo, or choose to use the day to express your gratitude for your close friends, in the style of Parks and Recreation’s invented holiday, Galentine’s Day.
If you’re in a relationship, you might have an extravagant, candle-lit, five-course dinner planned with your loved one. Or maybe you’ll keep it a bit more simple and say “I love you” to your sweetheart, with a thoughtful card, box of chocolates, and a dozen roses in hand.
Whether or not your scenario includes a dozen roses, though, consider this:
What if you received 11 roses in your bouquet, instead of 12? What if you knew that a rose was spared because the value of that flower helped support a child living with diabetes in a less-resourced country?
I bet you wouldn’t mind getting one less rose in that case.
This Valentine’s Day, please consider sparing a rose as part of your celebrations. Life for a Child is a nonprofit charity that created the Spare a Rose campaign. They’re able to support nearly 20,000 young people living with diabetes by using donations to buy them insulin, syringes, clinical care, diabetes education, and more. Anyone who’s familiar with diabetes realizes that access to care, education, and resources is critical to living a healthy and normal life. No one would want to deny another, especially a child, from having to forgo these resources because of the financial burden associated with them.
I’ve never been afraid of my birthday. In fact, I’ve looked forward to it every single year because of all the fun things that distinguish the occasion. I’m lucky to be able to say that each third of May of my life has been filled with celebration, gratitude, and cake – what’s not to like about that?
But this year is different for me. I’m turning 26, which means I’ll no longer be eligible for dependent coverage under my parents’ health plan. I’ll need to enroll in my employer’s plan and figure things out from there.
This is terrifying to me. Why?
I’ve heard the stories.
Alec Raeshawn Smith’s story sticks out to me the most. He researched his insurance options and when he realized that the out-of-pocket costs for insulin were exorbitantly high, he decided to forgo insurance because it seemed more manageable to him.
He passed away just one month after going off his mother’s health insurance plan.
His family believes he was rationing insulin in order to survive until he could afford to buy some more.
There’s nothing about Alec’s story that isn’t tragic. It’s especially sad and frightening to someone who is about to begin navigating the confusing, expensive, and ruthless world of health insurance.
I’m hoping that I never get to a point where I need to pursue the dangerous “solution” of rationing insulin. But I’m also hoping that the biggies of insulin manufacturing – Novo Nordisk, Eli Lilly, and Sanofi – wake up and realize that they’re doing more harm than good. In 1996, just one year before I was diagnosed with diabetes, one vial of Humalog insulin (which I’ve used and continue to use since diagnosis) cost $21. Fast-forward 20 years, and Humalog costs skyrocketed to twelve times the cost at $255 per vial. Why? What could possibly justify this? How could anyone say that it is right for someone with diabetes who needs insulin to survive, and who didn’t ask for diabetes or do something to cause it, to pay that much on a regular basis to stay alive?
One thing is for sure: Insulin prices CANNOT stay as high as they are. There’s simply no reason for it, other than shameless, disgraceful greed.
And that is the simple truth of why I’m afraid to turn 26 this year.
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.