Category: Diabetes Advocacy

My Thoughts on *That* Insulin Cap News

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Just over a week ago, Eli Lilly announced a 70% reduction in price for its most commonly prescribed insulins that resulted in a cap of patient out-of-pocket costs at $35 or less per month.

This news was huge and spread like wildfire across the diabetes online community. And for good reason – it’s something that so many people with diabetes have needed to happen for a very long time. Most reactions I saw were that of complete and utter joy and relief. I’ll admit that’s what I felt at first, too, until I saw the more displeased responses that directed additional frustration and rage at Eli Lilly for not taking this action sooner, or reducing the cost of insulin to make it free altogether. Those posts got me thinking.

I’ve had time to reflect and gather my thoughts on the matter, and I think I land somewhere between thrilled and bummed, myself.

This news is absolutely something to be celebrated, as it will undoubtedly assist people who struggle to afford insulin with astronomically high price tags. This is an issue that I’ve spoken about on the blog before, and while I feel very fortunate to never have personally struggled with affording my own insulin (though I’ve certainly complained about out-of-pocket costs in the past), I’ve read countless stories about individuals in the United States who’ve had to take drastic measures in order to obtain this life-saving medication. So this news is wonderful, for sure, but it also feels a little too late.

Is this response from Lilly induced by the pressure that they’ve felt from diabetes advocates in the last several years? Is it a genuine call to action to other insulin manufacturers to follow suit and slash prices? Is it all just some sort of PR stunt? My suspicion is that it’s a mixture of all three, and while this feels like a victory for now, I don’t think that I will personally be satisfied until all people with diabetes are able to get insulin for free – no bottom line, no gimmicks, no nothing other than access for all.

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My Diabetes Does Not Make Me Brave

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“I’m a big brave dog, I’m a big brave dog, I’m a big brave dog…” is a mantra that little Chuckie Finster repeats to himself, over and over again, in an episode of The Rugrats that I recall vividly from my childhood.

It’s probably so cemented in my memory because I identified a lot with Chuckie as a kid – I was constantly overly cautious, nervous to try new things and scared about breaking rules or going against the norm. While I’ve overcome many trivial fears as I’ve gotten older, I still don’t think that I’m brave, despite many people telling me that I am…almost always in the context of my diabetes.

“You inject yourself with actual NEEDLES?! You’re so brave!”

“You wear two medical devices at all times? You’re so brave!”

“You put your diabetes story out there to share with others? You’re so brave!”

These are comments I’ve received from family, friends, and total strangers over the years, and while I appreciate the sentiment, I definitely don’t think that my diabetes has made me brave. I do these things because I have to. If I chose to not take care of my diabetes, or talk about my lived experience with it, I would be a much less healthy and happy individual. In my opinion, this isn’t equivalent to bravery – it’s common sense. It’s my reality that I accepted a long time ago.

As someone who is generally anxious and constantly worried about so many things besides diabetes, I’d much rather be admired for being brave about anything else that doesn’t remotely relate to my diabetes. Call me brave for trying something new that I was genuinely terrified about, or maybe say “you’re so brave” in a situation in which I took a stand for something I believe in. Hell, I don’t even mind if you continue to think that I’m brave in my journey with diabetes, but just recognize that my diabetes doesn’t make me brave – there are so many other facets of life that require genuine courage and spirit, and for me, I prefer to think of my diabetes as one teeny, tiny speck in that much larger, grander picture.

7 Questions People Always Ask Me About Type 1 Diabetes

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This was originally published on March 1, 2019 on Hugging the Cactus. I’m sharing it again today because these questions (and answers) are truly timeless: I feel like I’ve been answering them to a certain degree for the last 25 years, and I fully expect to have people continue to ask me these questions in the future. Fortunately, as someone who enjoys being a diabetes advocate, I don’t mind answering them and providing insight…but that doesn’t make some of these questions any less eyeroll-worthy. Read on to see what I mean…

Human beings are naturally curious creatures. So it’s never really surprised me when, upon discovering my T1D, people tend to ask me boatloads of questions about what it’s like. And it’s definitely not at all shocking that many of these questions are recurring.

Here’s a list of seven questions that I’m almost always asked when I encounter someone who’s just learning about my diabetes. You’ll notice a trend as you read, because even though there’s “no such thing” as a stupid question, this list kinda gets dumber as it goes on. There, you’ve been warned…

7. What does it mean when your blood sugar is high/low?
This is definitely a fair question. I never expect someone who is unfamiliar with diabetes to know the meaning of hypoglycemia or hyperglycemia. I actually kind of appreciate being asked this question, because it helps me spread awareness. The more people that know how to react in severe high or low blood sugar cases, the better, IMHO.

6. Why do you wear all of those devices?
Another decent question – I never mind explaining how my CGM and my pump work, but I do mind when people say ignorant things, like “Oh, are those patches to help you quit smoking?” *Eye roll*

5. Can you eat/drink [fill-in-the-blank]?
Ugh…I get why people ask me this, but it’s a little more tiring to explain. My answer is usually along the lines of: “I can eat or drink whatever I like, but I need to take insulin to account for it. So I try to eat a limited amount of carbs at a time, because that means I have to take less insulin, and there’s less room for error.” But even after that easy-to-understand explanation, the typical follow-up questions are “BUT CAN YOU EAT CAKE/COOKIES/ICE CREAM/ANY SUGARY FOOD?!” And that’s when I lose a bit of my patience, TBH.

4. Does it hurt when you check your blood sugar/give yourself a shot?
I mean, no? I’m not trying to be facetious or anything, but really, after 21+ years of checking blood sugar and giving myself insulin multiple times per day…there’d be a real issue if it hurt every single time. I concede that there are the occasional sites that sting, but it’s not nearly as bad as many people seem to assume.

3. What’s that beeping sound/ARE YOU GOING TO EXPLODE?!
Honestly…use common sense. What’s the likelier scenario here: That my devices have built-in alarms, or that I’m going to spontaneously combust?

2. How did you get diabetes/WHAT DID YOU DO WRONG?
This. is. such. an. ignorant. question. Nobody, myself included, did anything “wrong” that resulted in my diabetes diagnosis. I didn’t catch it and no number of lifestyle changes could have prevented me from developing diabetes. My immune system merely decided to attack and destroy the insulin-producing beta cells that lived in my pancreas. There’s no real answer as to how diabetes is caused, though genetics likely play a role in it. Don’t worry, you won’t “catch” the ‘betes by being in my presence.

1. Do you have the…bad kind of diabetes?
This question is THE WORST of them all because there is no good kind of diabetes! Gestational, type 2, LADA…none of them are favorable. They all suck. They all require constant care, regulatory medications, and endocrinology expertise. So please for the love of all that is sacred and holy, next time you hear someone ask this question, gently inform them that there’s no such thing as good/bad diabetes.

Yes, I Can Eat Cheesecake and Pizza.

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Yes, I have diabetes.

Yes, I can eat cheesecake and pizza.

Yes, I can actually eat whatever I want – I just have to know the carbohydrate content of whatever I’m consuming (and being mindful of portion size doesn’t hurt either).

Yes, I’m telling you this because at the time of this writing, that’s actually what I had for lunch this afternoon: homemade pizza and cheesecake. The pizza crust was store-bought, but everything else – from the sauce to the cheesecake crust to the strawberry topping – was made by me and it was damn good.

Funny story: I sent a picture of my cheesecake (shown above) to my coworkers and because I have terrible lighting/I’m not a food blogger, someone thought it was a photo of baked beans and I couldn’t stop laughing.

I guess I’m just taking a moment to 1) congratulate myself on semi-mastering the home-cooked versions of these two foods, but also to 2) reflect on how there’s so much stigma, STILL, on what people with diabetes can/can’t or should/shouldn’t eat. It’s wild to me that there are countless people in our world who misunderstand that a diabetes diagnosis automatically eliminates certain food groups from an individual’s diet.

Let me say it louder for those in the back who can’t hear: People with diabetes can eat whatever they want. Diabetes varies from person to person, and so do dietary preferences – so just because one person with diabetes might follow a strict keto diet, it doesn’t mean that ALL people with diabetes do. It doesn’t make it right or wrong for a person with diabetes to choose or not choose to eat certain things – period, bottom line, end of the story.

And by the way – I took a big old bolus of insulin for aforementioned pizza and insulin and my blood sugar didn’t spike past 188 mg/dL several hours later – score! So I’m also using this blog post to remind myself that it’s okay to eat “treat” foods like this from time to time, and that does not make me a bad diabetic.

Spare a Rose for Ukraine

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Just a couple of weeks ago, I shared my annual blog post in support of the Spare a Rose campaign – you can read about what it is, who it benefits, how it started, and why I like to do what I can to raise awareness of the campaign each year here.

But right here, right now, is about how the Spare a Rose campaign has been extended and taken on a new meaning due to recent world events.

The Spare a Rose campaign takes on even more important meaning in the month of March.

Presently, the campaign is now called Spare a Rose for Ukraine. In the past several days, I’ve seen rallying cries around the diabetes online community that have all echoed similar sentiments: What can we do to support people living with diabetes in Ukraine who need access to life-saving medical supplies in this time of crisis? That’s how Spare a Rose for Ukraine was born.

Throughout the month of March, donations made to the Spare a Rose platform will support people with diabetes in and out of Ukraine. These donations will help people who are in desperate need of supplies obtain them, and with donations being directed to Insulin for Life – a charity that has more than 20 years of experience providing insulin/diabetes supplies to under-resourced countries as well as responding to emergencies – I feel confident that this campaign will result in countless lives being saved in such dire circumstances.

If you’d like to learn more, or make a donation, please visit the Spare a Rose website.

That “Thing” on my Arm

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This blog post was originally published on June 12, 2019 on Hugging the Cactus. I’m sharing it again today because when you live with T1D, it’s inevitable that you’ll attract stares – and sometimes questions you’d rather not answer – from people who are befuddled by your diabetes gadgets and gizmos. This one encounter in particular is a great reminder that not all oglers have ill intent…read on for more.

“Yo, I don’t mean to be rude, but what’s that thing on your arm? Looks pretty cool.”

I turned around to face the stranger who was looking at me and asking me this question. It was well after midnight and we were on the rooftop of a fairly crowded bar. It was a balmy, summery night and I was enjoying the atmosphere with my boyfriend and my best friend. I’d had a few drinks over the course of the night, but judging by the state of everyone else on the rooftop, I was probably more sober than most of them.

That “thing” on my arm is basically my pancreas – please don’t stare at it, bro.

I could’ve answered his question in a scolding manner; it wasn’t a “thing”, it was a device that keeps me alive.

I could’ve totally dismissed him and told him to mind his own beeswax, because really, it is sort of rude to point out something on another person’s body.

I could’ve lied and told him it was something that it’s not to get him to stop bothering me.

I could’ve launched into an educational breakdown of what an insulin pump is and why my OmniPod looks the way it does.

I could’ve done any number of things, but instead I decided to say, “Oh, this is my insulin pump. I’ve got it decorated right now with a picture of a lighthouse because I like adding some style to it.” I smiled at him as a way of reassuring him that I really didn’t care that he was asking me, because I didn’t.

My straightforward answer seemed to please this random man. He told me again that he thought it was cool, and then we chatted a bit about where the lighthouse is and discovered we both have a connection to Massachusetts. Within a few brief moments, the conversation was over as we went our separate ways.

It was a perfectly harmless interaction that could’ve went a number of different ways, but to me, it’s all about context. This guy was just asking out of curiosity, and I truly don’t think he was trying to be rude about it. So I answered his question succinctly but good-naturedly, because I felt that was the only way to go about it in this busy party environment. Plus, let’s be real here…had I delved into a discussion about diabetes and devices, this drunk man probably wouldn’t have digested a single detail of my description. (Ahh, I love alliteration.) And another important point? He was damn right, my pump did look cool because of the lighthouse sticker!

But man, how much simpler it’d’ve been if I’d just been wearing my “THIS IS MY INSULIN PUMP” sticker on my pod that night.

Spare a Rose and Save a Life this Valentine’s Day

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The world has turned upside down in the last couple of years, but some things remain the same. For instance, we still celebrate holidays and special occasions with those we love. And today just so happens to be a holiday that’s all about love!

Valentine’s Day…whether you adore or abhor the day, it exists. It’s a day that’s synonymous with chocolate, love, and flowers; more specifically, a dozen red roses.

A dozen red roses is a classic Valentine’s gift. But 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 provide insulin to someone who needs it to live?

I bet you wouldn’t mind getting one less rose in that case. And it might just make you like the holiday a little bit more!

Who knew that the value of a dozen roses could pay for a child with diabetes to live another year of life?

A little bit of history: Nearly 10 years ago, folks from the Diabetes Online Community (DOC) started the Spare a Rose campaign for the organization Life for a Child. This campaign was able to give insulin and diabetes supplies to children and young adults with T1D in under-resourced countries. Starting in 2022, these individuals looked at how they might be able to support all people with diabetes, seeing as the need for insulin and related supplies and care lasts well beyond childhood.

Thus, Spare a Rose, Save a Life was born! Donations to this campaign go to Insulin for Life, a charity that provides resources, education, and advocacy to many of the same under-resourced countries that were supported by the original Spare a Rose campaign.

It’s an absolutely wonderful idea that will positively impact – and save the lives of – even more people living with diabetes who need access to vital medication, supplies, and healthcare.

I’ve written about the Spare a Rose campaign for the last few years on this blog because it’s a beautiful way to celebrate a day that makes some swoon and others sick to their stomachs. A common complaint among people in this day and age is that too many holidays are all about raking in the dough for companies like Hallmark; in other words, most holidays have lost their original meaning and have become too commercialized.

So here’s your chance to bring back some significance to Valentine’s Day. In the light of the health challenges the world has collectively faced in the last couple of years, it’s more important than ever that we do all that we can to help people with diabetes access life-saving supplies and care.

Learn more about Insulin for Life, Spare a Rose, and donate here.

Reflecting on National Diabetes Awareness Month 2021

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Well, we’ve arrived at the end of another November, which means National Diabetes Awareness Month is drawing to a close.

What a time it’s been.

Another NDAM has come and gone.

I don’t know about you or anyone else, but it seems like all of my social media feeds were saturated with diabetes content all month long. This is due in part to my job, for sure, but outside of that it felt like diabetes was everywhere online. And overall, that’s a really great thing! To me, it shows that our community has a great sense of pride in our ability to be advocates and to dispel myths about a largely invisible and mostly misunderstood chronic illness.

The teensy-weensy downside to all that, though, is that I felt like a bit of a failure compared to everyone else.

Like I said earlier this month, I simply didn’t have the time or bandwidth to commit to anything specific for NDAM. The desire was there, but I didn’t think it would be right to participate in any daily postings or activities if the intention behind them was lacking authenticity. In other words, I didn’t want to be going through the motions this month of being a “good” advocate, I wanted anything that I did to serve the dual purpose of coming from the heart while also making a positive impact in the diabetes awareness space.

I’d like to think that I accomplished that, but as I inevitably saw the countless other posts from all the other incredible diabetes advocates in our online community, I still couldn’t help feeling like I could’ve tried harder. I could’ve devised a plan ahead of time to do something more significant…but I didn’t.

I guess it’s beginning to dawn on me that diabetes blogs are fewer and far between than they were a mere 5 years ago. I know there are other devoted diabetes bloggers out there, but it feels a lot lonelier than it did when I first started as people turn more and more to the more visually stimulating environments of Instagram and TikTok. Because of this, I think I’m my own worst critic – because I choose to blog about diabetes instead of posting about it in any other format, I fear that I’m not having the impact that I yearned to have on our community, thereby rendering anything I have to say on here semi-pointless.

However, just because I’m experiencing these feelings, it doesn’t mean I’m ready to cease blogging or believe that my form of diabetes advocacy is unacceptable. In fact, I think that in writing this post, I’m also realizing that diabetes advocacy is just like diabetes itself – there’s no one-size-fits-all formula. It will look different on all individuals.

So maybe that’s the attitude and energy I carry away from this NDAM and into the coming year…one that allows me to embrace the kind of diabetes advocacy that I enjoy, that I (hope) am good at, and that continues to connect me with others all around our community.

What I Wish People Knew About Life with Diabetes

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As National Diabetes Awareness Month speeds by in a lightning-fast pace, I keep finding myself going back to this question: What do I wish people knew about life with diabetes?

My answer to this question changes depending on the kind of day and experiences I’m having with my diabetes. For example, on the occasions that I have a pod failure or my Dexcom loses signal for hours, I wish that people knew life with diabetes is marked by a dependence on technology. When I have several bad low blood sugars in the middle of the night, I wish that people knew life with diabetes means you lose out on a lot of sleep. And the times that it seems like I live at the doctor’s office or spend all my spare time on the phone with insurance companies, I wish that people knew life with diabetes can be a giant (and expensive) time suck.

While there’s obviously a lot that I wish people knew about life with diabetes, I think that I can identify the number one, most important thing that I wish people knew…and that is: life with diabetes is unpredictable. No matter how many years I’ve lived with it, no matter how often I think that I’m doing the right thing in my care for it, it can still prove me wrong all the time. It’s challenging, frustrating, stressful, and draining, and I really wish that people realized how much work it requires to have diabetes. It’s not as simple as counting carbs, injecting insulin, and eating right – it demands mental and physical energy in order to care for it properly, and people living with diabetes don’t ever get a break from that.

I do my best to smile, even when diabetes is at peak unpredictability.

Despite that, I try to smile through it all…because diabetes and its curveballs are a lot easier to handle with a positive mindset. But that doesn’t mean that I don’t wish that people knew how difficult it can be, too.

Happy National Diabetes Awareness Month!

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It’s that time of year again – National Diabetes Awareness Month!

Did you know that the blue circle is the universal symbol for diabetes? It represents the unity of the global diabetes community in response to the rising number of people affected by diabetes.

I’m not sure if it’s because I work for a diabetes organization now, but sheesh, this month seems to have arrived more suddenly than it ever has. I’d say it’s caught me off guard, but after literally months of preparing for it as part of my job, it’s really just got me marveling over how fast time flies.

It’s also got me reflecting on how I’ve participated in NDAM in the past. Previously, I’ve done daily postings on my Hugging the Cactus Instagram account and replied to various prompts throughout the four weeks here on the blog.

This year, I’m not so sure I have the bandwidth to dive so deeply into the spirit of the month – but that doesn’t mean I’m mentally checking out of it altogether.

Rather, I’m plan on being more intentional in my approach. Instead of replying to daily prompts (that, over the course of the month, start feeling like homework – in other words, an unenjoyable task), I’d like to post when I feel like I actually have something to say. I don’t want to post filler content, I want to post things that are meaningful and capture my feelings about diabetes, NDAM, and the broader diabetes community.

That’s not a knock on the everyday post inspiration that many members of the DOC take part in – I think it’s wonderful that they have fun with it and use it as a very effective way to raise diabetes awareness throughout the month. It’s just that for me, as someone who’s been part of digital NDAM activities for the better part of a decade (!!!) now, it’s time that I mix up my routine a bit and also step back so I don’t spend all of my mental diabetes energy on NDAM in lieu of my actual diabetes care.

Here’s to deliberate diabetes awareness and care this month!