I popped into a CVS store on my way home from picking up groceries to pick up something very important…Starburst jellybeans, because naturally, I “needed” them.
When I was in the store, I wandered over to the diabetes aisle, curious to see if browsing the shelves would remind me of any supplies I should pick up.
My eyes fell on a box of ketones testing strips and I paused, pondering whether or not it was worth it to buy them.
Are ketones testing strips a must-have or no-need item for you?
I admit that I scarcely ever check my ketones when my blood sugar is above 250. I know that I should, but a combination of laziness, anxiety, and lack of unexpired strips usually stops me from checking. And when I do have strips on hand that aren’t expired, it seems that I’m only able to use a couple out of the 25+ strip bottle before the whole dang thing expires, which is frustrating. In fact, prior to this CVS trip, I had a vial of ketones strips sitting in my bathroom that expired more than 4 months ago. I hadn’t trashed them yet because I stubbornly hang onto things far longer than I should.
So I stood in that CVS aisle, my hand hovering out in front of me over that box containing the ketones strips. To buy or not to buy? Do I spend the money knowing that I’ll probably only use a few strips? Or do I save the approximately $12 and walk out the store knowing that I don’t have useable strips at home?
Ultimately, I bit the bullet and bought the strips. I know myself well enough to know that I’ll take comfort in knowing that they’re available to me if and when I decide to use them. Besides, $12 is a fairly small ask when it comes to monitoring something as important as this and granting myself peace of mind.
If only we could have a price like that for life-saving insulin…
This article was written by Elana Megerian and it was originally published on March 24, 2021 on the T1International blog. I’m re-posting it here today because, quite frankly, I found it disturbing. I had no idea that safely navigating encounters with law enforcement was a problem for the diabetes community. I can also admit that I made assumptions based on the headline of this article, but decided to stick with it only to discover that my assumptions were wrong and that the criminalization of diabetes symptoms is a real issue. If you have any doubts about this article, I encourage you to read the full piece so you can understand what’s going on and the steps that should be taken to address it.
When widespread Black Lives Matter protests erupted in the summer of 2020, the diabetes online community began crowdsourcing ideas about how to safely participate. Concerns grew in response to an incident in which police confiscated the supply bag of a protestor with type 1 diabetes, despite her consenting to a search and communicating her need for glucose.
A viral video of the encounter revealed another pressing need of the diabetes community: how to safely navigate encounters with law enforcement. This led me down a rabbit hole that heightened my alarm as I found story after story of police and prisons withholding insulin.
In 2013, footage from Rikers showed Carlos Mercado repeatedly vomiting, fainting, and displaying signs of severe illness in the presence of corrections officers. At age 45, he died after having his insulin withheld for 15 hours.
In 2014, William Joel Dixon was found dead in his cell after his insulin was withheld for seven days. Records show that his blood sugar was only checked once during that week. He was 28 years old.
In 2015, Michael Robinson died after being put in solitary confinement in response to his pleas for insulin. He was 33.
In 2016, Morgan Angerbauer’s death in an Arkansas jail cell was caught on video. Records show that she had been calling out for help, but was ignored. She received no insulin for 23 hours, and her requests for blood glucose checks had been denied. She was only 20 years old.
In all these situations, staff were aware that the victims required insulin to live. In all the cases, insulin was withheld long enough to induce diabetic ketoacidosis, a potentially fatal complication that usually occurs in people with type 1 diabetes who do not have regular access to insulin. It is a torturous and almostly completely preventable cause of death, yet it is far too common in US prisons. Since 2008, at least 12 such deaths related to withholding insulin have occurred in the state of Georgia alone.
“#insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach.”
Diabetes symptoms have also often been criminalized. In August 2020, Max Johnson, a black man with type 1 diabetes who was having a seizure due to hypoglycemia, was dosed with ketamine by police and Emergency Medical Services (EMS) after his girlfriend called them for help. The same drug that killed Elijah McClain, ketamine was reportedly delivered to Johnson at such a high dose that it rendered him unable to breathe and led to a two-day stay in the ICU. The American Diabetes Association has documented many other cases in which people were denied insulin, or had their diabetes symptoms treated like criminal behavior by police.
These instances flagrantly defy the 8th and 14th amendments of the United States, which protect the right to adequate medical care for incarcerated people as well as those in police custody. Since the law is unequivocal, it is distressing that violations are commonly committed by the very individuals and systems meant to enforce it.
One factor perpetuating this is the lack of recourse for victims and their families. It’s hard to successfully bring a case against the police or a prison. Even if such a case is won, it doesn’t bring back a lost life, reverse damage from chronic hyperglycemia, or ease the trauma of being brutalized by those called in to help you through a medical crisis.
So what can be done? Standards of ethical behavior need to be raised for police, EMS, and corrections officers. Given how common the condition is among incarcerated individuals, anyone working with this population should be educated about diabetes, its basic management, and the signs of acute crisis. Deaths due to subpar medical care aren’t rare occurrences. Chronic illnesses are the leading cause of death in US prisons and are probably frequently covered up.
This disproportionately impacts Black Americans, who have higher rates of incarceration, diabetes, and diabetes-related complications compared to their white counterparts. Diabetes is too often a death sentence in the prison setting. Advocacy for prison reform is urgent.
It is time to recognize that incarcerated people with diabetes are particularly vulnerable to insulin insecurity. #insulin4all is more than a hashtag: It is a rallying call to everyone impacted by insulin inaccessibility, and a mournful cry for all who have lost their lives while insulin remains clearly in view, but cruelly out of reach. It’s a demand for justice for everyone who needs insulin to survive, including incarcerated people with diabetes. We must find ways to meaningfully include and involve this population in our activism.
Imagine my surprise when I went to write about today’s new blog post on my Instagram account and swiftly realized…I didn’t have a new post! Life’s busy and as a result, I’ve fallen a bit behind my blogging schedule.
Luckily, I have the day off from work today, so I’m able to whip up a quick post on something that people might be wondering about: How did my diabetes and I fare after receiving dose 1 of 2 of a COVID vaccine?
I am officially halfway there on the vaccine front.
I’m going to rapid-fire this one and sum it all up with some bullet points:
I got the Moderna vaccine
I felt 0 pain when I was injected – in fact, I didn’t feel anything and was surprised when the nurse told me I was all set
I had to wait 15 minutes after the dose was administered to make sure I didn’t experience any type of reaction
I had no reaction whatsoever
About 18 hours after I got the vaccine, I noticed some slight pain around the site
I could not see any marks around the site – no redness, no apparent injection location
The pain was only noticeable when I was changing my clothes
My blood sugar within the first 24 hours was mostly fine (I wasn’t eating super healthy so any high blood sugars can be blamed on my poor diet)
My blood sugar was fine 48 hours later, leading me to believe that the vaccine had 0 impact on my blood sugar levels (I had somewhat anticipated elevated blood sugar levels because my mother, who also got the Moderna vaccine, said her levels were higher 2-3 days later post-vaccine)
I felt absolutely normal! I got the vaccine three full days ago as of this writing and I can’t say that I’ve noticed anything different
That was my experience; remember, all people with diabetes (and without diabetes) are different and may experience different things. If you have any questions after reading this post, I highly recommend reading this post from Beyond Type 1 that tells you what you want to know about the vaccines. And here’s my little disclaimer to talk to your doctor about any concerns you have.
I’m glad that I got my first vaccine and that it was a hassle- and pain-free experience. I’m looking forward to getting dose number 2 at the end of April and will be sure to recap what it’s like then. In the meantime, I’m happy to continue masking up and practicing social distancing – after all, we’re in this together, and just because I got one vaccine doesn’t mean that I can’t do my part to help protect others.
Scroll through Facebook, Instagram, or any other social network and 99% of what you see is the idea of “perfection”: Beautifully dressed and made-up individuals showcasing their gorgeous homes or families or possessions. Usually, some sort of caption will accompany the post and it might say something like “so blessed to do life with my dream partner” or “we just bought our first home, can’t wait to fill it with joyous memories” or some other gushing, effusive language that is followed by a series of exclamation points and emojis.
There’s nothing wrong with this…except for the fact that, obviously, people’s lives aren’t as “perfect” as they seem.
Life is messy, but we don’t get to see that side for many people on social media.
This is true not just about life events, but something as specific as life with diabetes.
I think that our community has gotten a lot better about it, but I used to see so many posts that showed “perfect” blood sugar graphs and “perfect” A1c readings.
And I used to obsess over these posts.
I’d wonder why I wasn’t achieving the same levels of success as these other individuals. I’d convince myself there was something wrong with me, and that I’d never have blood sugar graphs or A1c levels that were “good enough” to share online.
Between diabetes perfectionism and real-life perfectionism (Why aren’t I married yet? When will it be my turn to start a family? What’s wrong with me that I haven’t met all the other adult goals that so many of my friends have met?), I was starting to drive myself insane.
Social media was breeding a culture of comparison for me.
I couldn’t log onto an account without immediately comparing myself to the images I saw and the stories they told.
It’s taken time, and I’m not always good about it, but I’m learning to tune out the noise on social media and how to stop comparing myself so much to others.
So how did I start to unsubscribe to that culture of comparison?
For starters, I came to terms with the fact that I didn’t want to leave social media altogether. I like how it keeps me connected with family and friends on top of connecting me with individuals all around the world. I like how it functions as a support system when I need to consult my diabetes online community for wisdom and guidance.
But I knew that I needed to take a step back. So I started slowly and gradually: I removed the Twitter and Facebook apps from my phone, telling myself that if I really wanted to check the feeds for either, I could do so using my Internet browser. I also spent less and less time scrolling, a habit that was addicting to me because I wanted to see as much content as possible, but also one that I recognized as damaging because more content meant more comparisons to others.
The most important thing that I did, though (and continue to try to do) is repeat a few mantras to myself:
This is just one page of this person’s story.
You don’t know the whole picture.
You don’t want to be anyone other than yourself because you truly do love the people and things in your own life.
It might sound silly, but reminding myself that social media is designed to show off the “best” parts of our lives really did help me come to terms with the fact that I needed to stop comparing myself to everyone. Just like I have plenty of bad things that happen in my life, I have a hell of a lot more good, and just because I don’t choose to showcase everything on my feed doesn’t mitigate the good.
And one last thing that I’m trying to do? I’m simply trying to be happy for others who revel in their successes and choose to share them online. I’m also trying to pay closer attention to those who are brave enough to showcase their failures online, diabetes-related or not. In fact, it’s not uncommon for me to open up my Instagram app, scroll through my feed, and see the most “perfect”, straight-lined Dexcom graph followed by an “imperfect” topsy-turvy Dexcom graph. I’m training myself to react to the former graph not by comparing myself, but by feeling good for the person who posted it. And in terms of the latter graph, I also don’t want to compare myself to it (I’m not proud of it, but I’ve taken a look at “bad” graphs before and said OMG, my numbers are sooo much better), but instead offer words of encouragement or commiseration – because we’ve all been there.
The comparison culture is toxic. It’s taken time for me to realize just how much it was affecting me, but now that I have, I’m glad because removing myself from it will help enrich the relationships I have online and in real life. When it comes to diabetes specifically, it’s difficult enough managing my own, and that much harder when I compare how I take care of it to how other people with diabetes live their lives. Learning to appreciate our diabetes differences instead of stressing over them makes it so much easier to support and uplift one another when we need it most.
A lesser-known fact about me: I used to love writing poetry. I wrote tons of it when I was a middle schooler and sometimes used it to explore the emotions I associated with my diabetes. I even won a prize in a poetry competition once for a poem that was about my journey to accepting my diabetes. Today, I revisit my poetry roots in this short piece about the scars that years of fingerstick checks have left on my fingertips.
If you squint reeeeeeeal hard, then you can see the careful placement of fingertip scars that I put onto this graphic hand. (I tried to take a picture of my own with less-than-satisfactory results, so a cartoon representation will have to do.)
Tiny black dots Littered across my fingertips These fingertip freckles are Constant reminders of Decades of life with type 1 diabetes My speckled fingertips Rough from the scars Worn from thousands of pricks Poked and prodded and pinched Countless times As part of the process to Help keep me alive Blood droplets Flood scarlet, startlingly red In contrast to my fair skin Temporarily masking the marks When wiped clean They reveal themselves Unashamedly Loudly Proudly Maybe I should be Proud of them, too.
This post originally appeared on the T1International blog on March 16, 2020. I wanted to share it here today because it’s a stark reminder that insulin access issues affect all kinds of people: those who do and do not have health insurance, stable jobs, and so forth. Thank you to Dr. Laura Nally for sharing her story about what happened when she went without insulin for a mere four hours, illustrating the serious nature of access to insulin for all.
In 1990, when I was 6 years old, I was diagnosed with insulin dependent type 1 diabetes. In 1996, I could purchase 1 vial of insulin for about $20 without insurance. Today, a vial of the same insulin that I have taken for 24 years costs somewhere between $250 and $400 in the United States. There is no logical or scientific reason for this. To put things in perspective, in Canada, the same insulin costs about 1/10th of the price.
I am a physician and I have health insurance. However, just because I have health insurance does not mean that I can always access affordable insulin when I need it. Recently, at my cousin’s wedding, my insulin pump became disconnected from my body. It had probably become disconnected when I went to the bathroom 2 hours earlier. It was an accident, and this sometimes happens when you sweat a lot. This honest mistake led to a serious medical problem.
I called my doctor immediately to get a prescription sent to the nearest pharmacy. When I went to the pharmacy, I wasn’t due for a refill, so I paid $369 out of pocket for 1 vial of insulin. I didn’t have a choice. I took a large dose of insulin immediately. Unfortunately, it can take up to 3 hours for insulin to work, and in the meantime, I became very sick.
Four hours after I had become disconnected from my insulin pump, I was vomiting on the bathroom floor at the wedding and falling asleep between vomiting episodes. I was confused, my thoughts were clouded, and I could not take care of myself. All of this happened after going just 4 HOURS without insulin!
Why was I so sick? I was starting to develop diabetic ketoacidosis, a life-threatening condition that prevented me from being able to think clearly. I see patients with diabetic ketoacidosis in the hospital frequently; they may be disoriented, confused, combative, sleepy, and even comatose. Even though I was able to recognize the early signs and symptoms, I still became extremely sick within 4 hours. It took me 12 hours to fully recover from this episode. My family woke me up to check my blood sugars, drink water, and take insulin every 2-3 hours overnight.
I am lucky because I knew what to do to treat this condition and that my family was able to help me.
I did not have time to call insulin manufacturers and ask for support.
I did not have time to figure out how to get a coupon for my insulin online, like many have proposed is a solution.
I did not have time to learn how to use Wal-Mart brand insulins, which act completely differently than the rapid acting insulins that I currently take. THIS WOULD HAVE BEEN FAR TOO DANGEROUS.
I did not have time to worry about how much I could afford to spend on insulin.
We don’t have time to argue over this issue. We need affordable insulin now. It’s a matter of life and death.
“Diabetes does not selectively affect individuals who can afford insulin and have health insurance; it affects people coming from all walks of life, regardless of socioeconomic status.“
Many people cannot relate to what it would be like to have your life depend on whether or not you can afford or access a medication. In all forms of type 1 diabetes and some forms of type 2 diabetes, you may be able to survive without insulin for as long as you can survive without water, which could be a few days or up to 1 week. Most people need a minimum of 3-4 vials of insulin per month. If we estimate that 1 vial of insulin can costs $300 without insurance, that would mean out of pocket insulin costs were $900-1200 each month for insulin.
What if a 1 month supply of water cost $900-$1200? Could you survive? For how long? What if you could only receive water once per month, and the amount depended on how much water your doctor thought you needed. What if the doctor didn’t estimate your water needs correctly?
What if there were restrictions on how much water you could receive in a given month by the company that supplies the water? Let’s say you ran out of water too soon and became extremely thirsty, but when you try to get more, you’re turned away because the water you were given last month should have lasted you longer. You will have to wait until next week to get your water. But can you survive until then?
What if the company you get your water from decided to verify that you REALLY need that much water, like insurance companies do with prior authorizations. They will contact your doctor to submit extra paperwork and if the larger supply of water is approved, you will know within 2-3 days. What do you do until then?
Diabetes does not selectively affect individuals who can afford insulin and have health insurance; it affects people coming from all walks of life, regardless of socioeconomic status. It affects our children, our parents and grandparents, our brothers and sisters, our friends and coworkers. No one who is in urgent need of insulin should be turned away from the pharmacy without insulin or the diabetes supplies that they need.
Life with diabetes can be inconvenient, unpredictable, and downright frustrating. But it’s not all bad. In fact, after living with it for more than 23 years now, I’ve actually identified a few different ways in which it helps motivate me.
And what, exactly, are those ways? Well…
#1: It’s constantly challenging me to strive for thebetter: Better “control” over my blood sugar levels, better management of my diet and exercise regimen, and better care of my entire body, in general. While it involves a lot of work, it’s extremely motivating because I know that anything I do for the better of my diabetes and my body now will pay dividends in the future.
#2: Diabetes encourages me to ask questions. I think that my diabetes is the reason why I’ve learned to be curious. It pushes me to want to know the who, what, when, where, why, and how of various scenarios, both relating to and not relating to diabetes. It’s natural for human beings to be inquisitive, but they don’t always do something to pursue answers to questions. My diabetes pushes me to do that, with varying degrees of success, and that’s something I’m grateful for.
After having diabetes for more than 23 years, I’ve realized that it can be highly motivating.
#3: It pushes me to prove people wrong. There’s so much stigma surrounding diabetes…”You can’t eat that! You can’t do this! You can’t do that!” are exclamations that I’ve heard my entire life from different people. Rather than nodding and smiling politely at these poor, misinformed individuals, I strive to show them exactly why they’re wrong. Whether it’s explaining the facts or going out and doing the very thing they said I wouldn’t be able to do because of diabetes, it’s empowering for me to smash down diabetes misconceptions.
#4: Diabetes inspires me to seek more out of life. This goes hand-in-hand with point number 3, but it counts as a separate notion because this is all about how I view my life with diabetes. I didn’t fully accept my diabetes until I was a teenager. That acceptance represented a turning point for me during which I realized that just because I was dealt this card in life, it doesn’t mean that it should stop me from accomplishing my hopes and dreams. Over the years, my diabetes has made me want more: opportunities, experiences, relationships…you name it and I’m hungry for it.
Sure, diabetes can be my biggest headache…but it can also be my greatest motivator, and I think it’s important for me to embrace the beauty of that.
The vast majority of the time, I’m relatively unbothered by my diabetes.
I accepted long ago that it’s not going away any time soon. While that acceptance has made it easier to live a full life in spite of diabetes, I definitely still experience the occasional day that diabetes bothers me more compared to other days.
The days that I’m unbothered by diabetes are enriched by the ones when it bothers me.
It’s the days that I’m trying to enjoy time spent with loved ones.
It’s the days that I want to eat whatever I want without any consequences.
Heck, it’s the days that I want to eat, period – I’ve had days in which diabetes has restricted me from eating much of anything at all.
It’s the days that I need a really solid night of sleep the night before, but don’t get it because diabetes interfered.
It’s the days that I’m feeling so burnt out from it all that I just want to be normal.
Obviously, I’ve learned how to power through these days that I’m truly bothered by diabetes. But the ones that I simply can’t find the strength to do so are the hardest, and that’s when diabetes really gets to me.
I think that after 23 years with it, I’m allowed to be bothered by my diabetes every now and then. I don’t have to radiate sunshine and positivity about life with diabetes 24/7.
However, I think it makes the times that I’m unbothered by my diabetes that much richer because that’s when I get to stick it to diabetes.
One year ago today was my first day working from home due to the pandemic.
I remember my final day in the office like it happened yesterday. There were hushed conversations in conference rooms, cubicles, and the office kitchen in which we all wondered how serious things were – and how serious they might become.
We had no idea what we were in store for.
One by one, as individuals who tended to work earlier in the day left for home, I said hopeful, “see you in a month” farewells, as we were all under the impression that we could come back to the office in a month. I remarked to one colleague, who is a close friend outside of work, that I had a feeling we’d all be grateful to come back and that we’d marvel in being able to be in close proximity to one another again.
I knew then that this was the start of something unlike anything most of the world had faced before, and I even documented the strangeness of it all by taking one last selfie at my cubicle (to be fair, I’d spent my lunch break at the hairdresser’s, so my hair was on point and IMHO warranted a selfie).
And here’s the aforementioned selfie, taken on March 12, 2020 at 5:38 P.M…during my last few minutes in the office.
That would be my final selfie, for certain, in that office. Because just five months later we’d all return to it one last time in small groups to pack up our desks, as our company decided to break the lease and save money on office space.
So I’ve worked from home for a year, and will continue to do so for the foreseeable future. I’ve got so many emotions tied to that: gratitude, sadness, loneliness, anger, resentment, wistfulness…
Let me go over the positives of working from home: I’m so grateful for my job and for how deftly my colleagues and I got used to full-time remote work. Several aspects of life are made easier by working from home, such as managing my diabetes (for example, if I ever experience a pod failure, I have every and any back-up supplies I could need at home as opposed to my desk drawers, which weren’t always stocked up all the way). I save time on a commute which allows me to fit in more tasks at the start and end of my day, and honestly, working from home full-time gave me the ability to get a puppy and feel confident knowing that I would be around to take care of her.
But there are some negatives; mainly, I miss the office camaraderie like crazy. I’m lucky enough to work with a group of people that I truly enjoy being around, so it’s been tough to maintain my connections with them virtually. And truthfully, I get lonely in my condo. Going into the office five days a week not only ensured I had contact with other humans, but it also guaranteed that I’d actually leave my home during the week. I’ve never felt so sheltered in my life, and it’s a weird feeling.
I guess that if I’ve learned anything in the last 365 days, it’s how to be adaptable. Honestly, not to connect it back to diabetes – okay but this is what my blog’s about so that’s to be expected – but it’s a lot like figuring out how to deal with change as it inevitably happens. Over the years, I’ve taught myself what to do when lows and highs happen, and how to manage certain situations if and when they occur in my diabetes life. And that’s what’s happened in this last year: a whole lot of learning how to handle life’s curveballs, in general, along with the ones that diabetes tosses my way.
Have you ever tried troubleshooting a problem so much that you start to feel insane, and then like magic, the solution to it becomes clear and you wonder why you hadn’t tried it earlier?
This was the case with me and the mysterious high blood sugars that plagued me for two and a half days.
Based on this image, can you tell what was causing my blood sugar to be stubbornly high?
Once I started noticing a pattern of high blood sugars that got worse every time I ate food, I started doing everything else except changing my pod. I tried taking insulin for double the amount of carbs that I was actually eating, I ran a 95% temp basal increase for 8 out of 24 hours in the day, I cut carbs altogether and ate only 0 carb foods, I skipped meals altogether, and I even tried marching around the house for 15-minute intervals to try to get my insulin pumping through my system faster.
And nothing worked. I was able to get my blood sugar no lower than 180, but for most of that 60-hour window of time, I spent a good chunk of it in the mid-to-upper 200s.
Finally, on the day that my pod was due for a change, I decided that it must be the culprit behind my high blood sugars. When I removed the old pod, I knew immediately that something was wrong because the smell of insulin was so strong; plus, there was a large, damp spot on the pod’s adhesive, indicating that perhaps my insulin was pooling under my pod instead of entering my body.
It took 5-6 hours after I removed the leaky pod, but I finally did start to come back down to my normal levels, and was totally back on track the next day. It was a frustrating experience to endure, but a stark reminder of something that I’ve known in the back of my mind for years: that when I’m in doubt, I should change my pod.
Hugging the Cactus 