Merry Christmas! I am taking today off from writing a longer blog post, but I wanted to be sure to 1) wish you and yours well during this holiday season and 2) remind you to take it easy this holiday. It’s no secret that just about everything about 2020 wasn’t great and certainly far from ideal…making it more important than ever to take a step back from everyday hectic life and take a moment to appreciate all your blessings, big and small. If you are spending the holidays alone or have trouble finding the joy in this time of year, know that you are not alone and be kind to yourself. Tell all the special people in your life that they are loved and you will instantly find yourself embracing the spirit of the season.
My 23rd “diaversary” (anniversary commemorating the date that I was diagnosed with diabetes) is tomorrow. Yes, that also happens to be Christmas Eve.
I was four years old when I was diagnosed with diabetes…so I don’t remember life without it. I’m not the type of person who gets overly emotional when sharing her diagnosis story because it’s just a foggy memory to me. So what is the significance of my diaversary to me?
On the one hand, my diaversary is the day that my life changed forever, that I had something taken away from me, that I lost a “normal” childhood.
But on the other hand, it’s representative of the day that I was given something that gave me strength, independence, and courage unlike anything else in my life has ever given me.
I choose to focus on that latter part.
I don’t want to mourn the day that I was diagnosed with a chronic condition, I want to celebrate…and the fact that it coincides with Christmas Eve, a day that’s very special to me and so many others, is sort of beautifully poetic.
So rather than dwell on 23 years’ worth of insulin injections, fingerstick pokes, doctor appointments, and carb counting, I’m going to think about how all of those things have molded me into the person I am today: A person who has refused to let diabetes get in her way of the things she wants in life.
So…remember when I said I didn’t have time to rewrite a classic Christmas carol this year? (Please refer to last week’s post.)
Well, that was before inspiration struck.
Regular readers of this blog know that the cost of insulin has been on my mind a lot this year…so when I was thinking about that and a certain Mariah Carey song came on, I knew what had to be done.
Without further ado, please enjoy my rendition of Mariah Carey’s “All I Want for Christmas is You”…with the words changed with insulin affordability in mind. Do read/sing along to this – break out your best diva voice!
I don’t want a lot for Christmas There is just one thing I need I don’t care about the presents Underneath the Christmas tree I just want insulin costs to go down More than you could ever know People with T1D deserve this win, All I want for Christmas is affordable insulin
I don’t want a lot for Christmas There is just one thing I need (and all PWD) Don’t care about the presents Underneath the Christmas tree We don’t need to pay so much To evil big Pharma (I) Eli Lilly won’t make me happy With generic insulin on Christmas day
I just want insulin costs to go down (ooh) More than you could ever know (ooh) People with T1D deserve this win, All I want for Christmas is affordable insulin (yeah, baby)
I won’t ask for much this Christmas I won’t even wish for diabetes to go (and I) I just don’t wanna keep on waiting For those prices to go low
I won’t make a complaint and send it To Amazon for their new insulin – (it’s lame) I won’t even roll my eyes When I file another insurance claim
‘Cause I just want insulin costs right (ooh) I’m tired of putting up this fight (ooh) What more can I do Oh, Baby all I want for Christmas is affordable insulin (ooh, baby)
All the pods are pumping So much insulin everywhere And the sounds of disgust over Insulin prices fill the air (oh)
And everyone is surmising (oh, yeah) Why are those prices rising? Santa won’t you bring me (yeah) What I really need (oh) Won’t you please make insulin affordable quickly
I don’t want a lot for Christmas This is all I’m asking for (I) I just want big Pharma to Listen to us all, for sure
I just want insulin for all (ooh) More than you could ever know (ooh) Help PWD win Baby, all we want for Christmas is affordable insulin (yeah, baby)
All I want for Christmas is affordable insulin, baby All I want for Christmas is affordable insulin, baby All I want for Christmas is affordable insulin, baby All I want for Christmas is affordable insulin, baby All I want for Christmas is affordable insulin, baby
This post originally appeared on Hugging the Cactus on December 20, 2019. I am sharing it again today because, well, look at the first line! In addition, I simply haven’t got the creativity this year to rewrite a different Christmas tune, so this will have to do. I’m quite proud of this one, anyways, and even though I’ll be celebrating a socially distanced Christmas this year, I will still most definitely be eating plenty of bolus-worthy goodies. Read (and sing) on for my rewrite of “It’s the Most Wonderful Time of the Year”…
It wouldn’t be the Christmas season if I didn’t attempt to rewrite a classic Christmas carol…
I apologize in advance for the cheesiness of this “new” tune, but I was thinking about how there are just so many parties, gatherings, and opportunities to eat absolute junk food this time of year. But even though I’m feeling pretty disgusting by the time January rolls around, I don’t regret it because I love everything about this season…so you might say that I think it’s worth every extra unit of insulin I have to take to cover the food I eat, making it the most “bolus-worthy” time of the year.
So naturally, “It’s the Most Wonderful Time of the Year” was the perfect song to redo for this blog post.
I sprinkled in references about questions that people with diabetes commonly get, as well…because with all the time that’s spent with family and loved ones, they’re bound to come up again just as they do year after year.
Without further ado, here is my rendition of the song…please feel free to read (sing!) along to the tune of the original – it makes it so much more fun, trust me!
It’s the Most Bolus-Worthy Time of the Year
It’s the most bolus-worthy time of the year With the Dexcom CGMs yelling And everyone telling you “what’s that I hear?” It’s the most bolus-worthy time of the year
It’s the ca-carb-iest season of all With those holiday sweets And so many treats when friends come to call It’s the ca-carb-iest season of all
There’ll be parties for pumping Temp basals a-bumping And answering the same old, There’ll be “can you eat that?” And all that chit-chat You can’t help that your eyes rolled
It’s the most bolus-worthy time of the year There’ll be so much indulging And insulin will be flowing when goodies are near It’s the most bolus-worthy time of the year
There’ll be blood sugar for checking Marshmallows for correcting And sensors and sites to change There’ll be silly relatives’ questions And answers in your irate expressions They should know by now ‘betes isn’t so strange
It’s the most bolus-worthy time of the year There’ll be so much indulging And insulin will be flowing when goodies are near It’s the most bolus-worthy time It’s the most bolus-worthy time It’s the most bolus-worthy time It’s the most bolus-worthy time of the year!
I love Christmas, crafting, and some might argue that I love T1D (that’s mostly false, but when you’ve got a chronic illness, you’ve got to learn how to love some aspects of it…otherwise, you’ll be miserable).
So I recently *attempted* to combine all three of these things and do a little DIY project with an empty insulin vial.
And I learned a few things along the way…
I do not recommend messing with a glass vial without safety glasses, gloves, and a trash can nearby. I was lucky enough to avoid any major glass breakage, but some did happen, and I could totally see this craft getting wicked messy and potentially ouchie without taking the proper precautions.
Insulin vials are stable AF…they are not meant to be tampered with.
Glitter cannot be directly injected into an insulin vial. Period, bottom line, don’t even try it.
Okay, so now that I’ve got my disclaimers/lessons learned out of the way, let me tell you why I decided to fill an empty insulin vial with gold glitter.
For years, I’ve seen DIY projects floating around online involving old diabetes supplies. They range in the level commitment and skill involved, but there’s no questioning the creativity of our community when it comes to recycling supplies we’d normally throw away after using.
One project that I’ve seen over and over again is transforming an empty insulin vial into a Christmas ornament: Simply stick an ornament hook into the insulin vial’s rubber top, hang it on a Christmas tree branch, and bask in its beauty. I decided to take this concept to the next level by putting gold glitter into the vial because insulin is often referred to as “liquid gold” within the diabetes online community. What better way to represent that than to make it appear as though the contents of a vial were truly liquid gold?
In order to do this, I set aside a vial once I was finished with it/sucked every last drop of insulin out of it. Then, I made a sad attempt at combining glitter with water and using an old syringe to transfer it to the vial (needless to say, I had no luck). So I came up with a new strategy: Pierce the rubber stopper and try to funnel glitter in…and that didn’t work. It became evident that I’d have to remove the top entirely, so using my nifty new toolkit that my father just purchased for me (thanks, dad), I set about the task. I used a razor to carve the rubber stopper up and out, and then pliers to get the metal maroon covering off completely. I broke off a small piece of glass in the process – whoops – but using those tools did the trick for me…all I did after that was take the cap from a new vial of insulin and glued it to the top of the glitter vial to ensure most of its sparkly contents would remain inside.
And voila, here’s the end result:
As I held the glittery vial in front of my Christmas tree for a few photos (if I didn’t take pictures, then it didn’t happen), it occurred to me that there’s a strong likelihood that many families will have to make a difficult choice this holiday season: Give a special gift to a loved one, or use that money to pay for insulin instead. Or even more seriously, to have to choose between making this month’s mortgage/utilities payments, or getting life-saving medication.
The thought shook me, as nobody should have to make a choice like that ever.
And so I thought of something to add to my Christmas wishlist: affordable insulin for all.
The first one – the Livongo meter – was made available to me through a recently launched company benefit from my employer for people with diabetes. A starter kit, including a meter, strips, lancets, and a carrying case, was mailed to me and I can actually order more strips as needed quickly and easily using a feature of the meter.
I obtained the second meter from my endocrinologist…but it was kind of by mistake. I was promised the latest and greatest Verio meter, the Verio Reflect, but the office set aside the Verio Flex for me. It was still technically an upgrade from my Verio IQ (a meter that isn’t even distributed anymore), but lacking the flash and flair of the Reflect.
So there you have it: I have the Livongo, the Flex, and the IQ. Which one do I actually use, though?
I’ve been sticking with the Livongo meter, even though there are times when I question its accuracy.
To combat that, I do a lot of comparing and contrasting with whatever my Dexcom is telling me…and I rely heavily on my physical symptoms when I’m low or high to help increase my confidence in what my devices are reporting.
In addition, my decision to use my Livongo as my main meter (and keep the IQ and Flex as back-ups, of course) was pretty easy to make in the long run because any test strips that I’ll need for it in the future will be provided by my company without any additional cost to me. I’m sorry (not really sorry), but if I can get ANY diabetes supply for FREE, then I’m going to jump on it…even if I’m not 100% in love with its functionality.
Accuracy is definitely the number one factor to me when considering using ANY diabetes device, but I’m also the type of person who is a little wary of any new technology. I will probably always doubt whatever it tells me to some extent. I’ve only really called into question the accuracy of my Livongo meter a handful of times, which isn’t a bad track record. And that’s basically my main gripe with the meter as a whole…otherwise, I love its design, style, ease of use, etc.
But I especially love that I didn’t have to pay a cent for it.
There’s never necessarily a good time to have a low blood sugar: Whenever they happen, they’re bound to be at least a little inconvenient.
But I was thinking about it the other day and it occurred to me that there is most definitely a worst time for a low blood sugar…at least, for me.
And that time is the middle of the night.
I love sleeping, but like many adults, I simply don’t get enough of it. So when something like a low blood sugar interrupts my slumber, it’s downright intrusive and honestly a bit scary, because I always have an underlying fear that I’ll sleep through my Dexcom alarms.
Take a recent middle-of-the-night low blood sugar for example…I was dealing with a lingering low at 1:30 A.M. I’d only been asleep for a couple of hours when I heard my Dexcom sound. I ignored it the first 3 times it went off, but something – my intuition, maybe – told me to roll over and at least check to see the level that my Dexcom was reporting.
I was somewhere in the 60s: low enough that I needed a juice box. I promptly drank it and got settled back under my covers, assuming that I would shoot back up in no time.
Not quite. I don’t know how many minutes later, but I looked at my Dexcom again and it said I was 56. I did the whole “confirm the number with my meter” shtick and ate some glucose gummies to supplement the juice box. I was irritated and my eyes were oh-so-heavy, but from there I forced myself to turn the television on and try to get distracted by a show so I wouldn’t fall back asleep until I knew that my blood sugars were stable again. Before too long, I was heading up, so I did my best to lull myself to sleep, though I tossed and turned for awhile before I finally did drift off.
All in all, I lost about an hour to an hour and a half of sleep because of this one instance! Not all of my lows are like that – sometimes I can fix them in 5 minute flat, other times they keep me up for upwards of two hours – but it doesn’t even really matter. It’s more so the principle of the thing.
Plus, think about how freakin’ ridiculous it is that people with diabetes have to eat something sugary to come up from a low – that in itself isn’t wild, but it IS grating to have to do in the middle of the night when you aren’t hungry and were enjoying a deep sleep. Also…ever try drinking orange juice after you’ve brushed your teeth? It’s unpleasant, to put it mildly.
So you have it: The middle of the night is the absolute worst time for a low blood sugar, in my semi-expert opinion.
On Saturday, December 5th, I attended my very first T1International #insulin4all meeting for the Massachusetts state chapter (virtually, of course).
What motivated me to join this meeting?
There’s a couple of factors…for starters, I’ve been a digital advocate for T1International for just over six months now. In that time, I’ve become familiar with their mission to not just promote diabetes awareness, but to empower individuals to share their stories and experiences with diabetes and fight for change to make insulin affordable for all.
I’ve spent the last few months reposting and sharing infographics and blog posts from T1International, but lately, I’ve felt the urge to do more because clearly, we’ve still got a long way to go when it comes to lowering the list price of insulin.
The problem for me, though, was that I wasn’t sure where to start, and since I work full-time, I was definitely foggy on how much of my spare time I could dedicate to a cause.
I had a vague awareness that #insulin4all chapters existed across the country, but I didn’t know whether the one in my state was active or if joining it would be the right fit for me.
So I felt it was kismet when I saw an Instagram post from a friend I met through the College Diabetes Network (hi, Claire!) announcing that she was going to take over leadership of the Massachusetts #insulin4all chapter. Through her post and a couple of messages back and forth, I learned that the chapter had been stagnant for awhile and it was Claire’s goal to assemble a group to revitalize it and start making real progress in our state.
Our first meeting went incredibly well: A handful of people showed up and we got to know each other as well as the rough roadmap that would direct our next several meetings over the coming months. What really struck me is that everyone who attended obviously had diabetes in common, but on top of that, we all shared a frustration with the current cost of insulin, even though we haven’t directly felt the impact of it like other members of our community have. It seemed that each person felt motivated to work together to do what we can in our state, and to me, that was a sign that I was going to be glad that I joined the group.
What’s next for the Massachusetts #insulin4all chapter? I’ll be sure to share it as we develop goals and set out to achieve them!
This post originally appeared on the T1International blog on November 30, 2020, and it was written by Marina Tsaplina. I am sharing it here today because it made me start to think about creativity and activism as a unit for the first time. Want to know exactly what makes it so powerful to join art with activism? Read on…
When I think about activism, I think about creativity. The two are inseparable. Think about how much creativity and strength it has taken the #insulin4all movement to:
Counter the stories put out by the for-profit U.S. health industry about why insulin “has” to be so expensive and transform the national narrative around insulin affordability
Continually transform the pain in our community into stories for change
Imagine a world where insulin is affordable and accessible for every single person who needs it to live.
#insulin4all, as a banner of the movement, is itself an act of fierce creativity. It imagines a world that we do not yet have, one that countless activists are organizing to bring forward. The courage and imagination that this statement holds brings forward a vision for the world we want to see. It makes it possible to strategically identify those whose actions harm or block us from achieving this vision. And under the banner of the #insulin4all vision – this dream that we are turning into a reality – we organize and strategically map out the steps we must take in order to achieve the world we want to see.
#insulin4all also means a different thing for each of us: each person who joins the movement has their own personal meaning and reason for why we join. And it is these deeply-felt personal stories that make adding art into advocacy and activism actions so powerful. It is another way to bring our personal voice into a collective movement for change. It is also fun!
Here are five reasons – showcasing #insuiln4all and other social change movements around the world – why joining art, creativity and activism together is so powerful. It fosters self-expression, community building, activation, it is inspiring and attention grabbing, and it leads activists to better engage with the media.
1. Self Expression
Getting creative helps hone your personal advocacy voice, transforms a personal feeling into a political message, and contributes your creative spirit into collective creativity. It also helps people feel that every single person’s voice matters. Because each voice does matter. Community art making is a deeply democratic process.
Patient activists pictured below are expressing their personal stories. As another example, signs created by individuals from the disability community NoBody is Disposable call for an end to the discriminatory medical rationing policies during #COVID19.
2. Community Building
Working on an art-build is a fantastic way to build community. Pictured below is one of the in-process photos from advocates making large banners for the New York #insulin4all Chapter and actions. The Chapter was still new and forming, and the art-making process, as well as the many advocacy actions the Chapter continues to do, forms connections between the members. Yes, it takes energy and effort, but once you’ve done it, you have the materials to use in many future actions! Not to mention, people showing up to contribute helps each of us know we are not alone in this fight.
This below pictured postcard was designed by New York #insulin4all Chapter member Annalisa van den Bergh for advocates to fill out and send to the governor. This is a great example of digital (and safe!) advocacy during COVID.
Community artist and organizer Rachel Schragis created screen-printed signs and banners, and led on the creation of many concepts for the Sunrise Movement, because climate health = public health = our health.
3. Political Activation
There’s no one right way to join creativity and advocacy – the image here shows the powerful way an imprint of a red hand across the mouth united indigenous women and allies across Turtle Island (United States and Canada) to bring awareness to the gender-and-race-based violence being perpetrated against indigenous communities.
Being immersed in creative energy opens the space within people to reflect on their own experiences, share and unite in dialogue with others, share opinions, build knowledge and commit to actions. People may often feel embarrassment, or shame, for being unable to afford insulin. This is how oppression works: we internalize external causes and place the blame on ourselves. Creative activism helps activate and engage a person to realize that their suffering has social origins, and helps inspire them to become an advocate and activist who works for policy change.
4. Inspiration and Attention Grabbing
To build energy and grab attention of the public to join your cause, there’s no better way than through creating a bit of a public spectacle. The large banners that the New York Chapter created took up space, and made our messages loud and clear for both the media, and passers-by. The portraits below of the lives lost to insulin rationing by artist Mike Lawson created a deeply-felt homage in helping us mourn the sons, daughters, sisters, brothers, mothers and fathers we have lost to pharmaceutical greed.
Giant puppets have a long and deep history in activism, including the HIV/AIDS movement and beyond. Little Amal, a giant refugee puppet, embarked on an epic journey from Syria to Europe in order to “rewrite the narrative about refugees”.
5. Media Engagement
Finally, by uniting creativity, purpose, emotion and action and creating attention-grabbing visuals, our cause is more likely to catch the attention of social media, and the press. Strong, clear messaging, unique perspectives, and inspiring visuals unite joy, inspiration and purpose in the long, winding road of social change.
Most of all, art and creativity helps us remember the most important thing: We are unstoppable, and another world is possible!
Diabetes can interfere with so many aspects of daily life…including friendships and relationships with others.
I’m an extremely fortunate person: I’ve never had my diabetes be a “deal-breaker” for a friendship or a relationship. I’ve never had much difficulty in explaining it to others or receiving support from friends when I’ve needed it. Of course, the level of support that I get from people in my life with T1D is much different compared to the support I get from people in my life without it, but both types of support are invaluable.
Recently, I had an Instagram follower ask me for my advice on how to help friends understand T1D: what it’s like and what’s appropriate to do/say to a person with diabetes. She expressed her frustration with a friend who doesn’t seem to understand that just because she has diabetes it doesn’t mean that she can’t enjoy sugary treats from time to time. So in response to her anecdote, I decided to round up my five best tips on how to navigate T1D and friendships/relationships in which there’s a lack of understanding and a little too much judgment.
#1: Be open, honest, and willing to answer questions. In almost two-and-a-half decades of life with diabetes, I’ve learned that this is the most important thing I can do when meeting new people and forging friendships/relationships. It’s not like my diabetes is the very first thing I say to people (“Hi, I’m Molly and I have diabetes” sounds like a South Park gag)…but it is something that I make sure to casually cover early on in the relationship. Opening the door to communication about diabetes from the get-go seems to have helped me avoid tricky situations in which I have to spend too much time correcting misunderstandings about life with diabetes and not enough time on fostering my connection with an individual.
#2: Show all aspects of life with T1D. My philosophy is to never hide any part of my diabetes from friends. I let them watch me when I do fingerstick checks, site changes, and more. I involve them when I need help correcting a low blood sugar or need to take a moment to do a bolus calculation. I’ve found that this really helps my friends feel included and they tend to show more interest and genuine curiosity when I do my “diabetes stuff” around them. It creates natural learning experiences for my friends and they get to see firsthand just how much work it can be to take care of my diabetes.
#3: Tag along to endocrinologist appointments. I understand that this might not be possible right now in this “new normal”, but in the past, I’ve had my significant other come with me to endocrinology appointments. The most memorable experience was seeing a diabetes educator with my significant other so I could be retrained on how to use an emergency glucagon kit, and so he could learn for the first time. It was really eye-opening for my partner, and ever since then, I’ve encouraged others to invite their loved ones or the person/people they live with to attend appointments every now and then. And hey, since so many doctors’ visits are virtual these days, maybe it’ll be even easier for more people to tag along to these appointments than before.
#4: Make an introduction to the DOC. Some of my friends are more social media savvy than others, so for those who have shown interest, I’ve introduced them to the diabetes online community on Instagram. There are sooooo many profiles there ALONE – forget Facebook/Twitter/other diabetes blogs – that do an incredible job of shedding light on the significant and mundane (and everything in between) parts about daily life with diabetes. These accounts have helped them truly get diabetes in a way they hadn’t previously and I think it’s made my friendships stronger, healthier, and judgment-free.
#5: Correct misconceptions – gently. Even my closest friends, or the ones with the best of intentions, have slipped up now and then and said something to my face that is simply not true about diabetes. And that’s okay, they’re not perfect (and they certainly know that I am not). When this happens, I use it as a teaching opportunity and let them know why what they said is wrong or factually incorrect. I find that the gentle, patient approach helps to reinforce whatever it is that I’m telling them, so at the end of the day, it’s a win-win for all parties.