T1D and Trolls (Literal and Figurative)

Let’s talk about trolls.

No, not the cute ones from the 90s with the gems stuck in their bellybuttons and wild, vibrant hair.

I’m talking about two specific types: Internet trolls and in-real-life (IRL) trolls.

They’re not my favorite kind of people, I’m betting you’re not a fan of them, either.

This is what T1D trolls look like in my (admittedly strange) imagination.

I can’t tell you how many times trolls have made their presence known on my Instagram posts. It always goes a little something like this: I post a photo to my account and within 10 minutes, I’ve got some sort of comment on it that goes a little something like this (the following is an actual comment I got last week):

Just wanted to let you know that truly what people are posting about DIABETESTYPE1 cure is true. I write one of the doctors and got herbal medicine from him and truly I’m cured from DIABETESTYPE1. It’s real. Message the doc @herbalist.ebho

There are so many things obviously wrong with this comment that I almost don’t want to deign to explain it, but let’s go over them real quick. 1) Diabetes can’t be cured from freakin’ herbs. 2) No matter how many times someone puts “truly” into a comment, it doesn’t make it TRUE! 3) Why on earth does this person think I’d want to seek help from some random Instagram doctor that probably isn’t even a real doctor? And 4) Obviously, this person – or bot, because I’m sure it’s a bot account – is simply plugging type 1 diabetes into this comment. I can only imagine how many other accounts it trolls that focus on various other chronic conditions…

I deal with most of these comments by deleting and/or reporting them immediately, but this time, I decided to respond to the claims that some generic herbs could cure my diabetes. This is what I said:

“Oh yeah? Is it? Wow I can’t believe I never thought to message some random person to get cured from T1D! Thanks for your completely inaccurate message and typos, have a nice life! ๐Ÿ™‚

And of course, I never got a reply…because that’s how trolls operate.

But what to do when trolls come creepin’ into real life?

You know, the people who tell you that their distant relative cured their diabetes by consuming cinnamon? Or the people who assume that you caused your diabetes by eating too much sugar?

I wish there was a delete/report option for those comments, but instead, I try to turn them into educational opportunities. My initial approach is always gentle when I explain that these myths are not only incorrect, but they increase the stigma and misunderstanding of type 1 diabetes. More often than not, trolls turn into apologetic students who walk away with the facts…but every now and then, you encounter a stubborn one who just doesn’t seem to get it.

As frustrating as that can be, it’s okay. Trolls are gonna troll and you can’t always slow their roll (ugh, I know that was lame, please forgive me). So even though I feel like I’m going to hit the roof if I see one more stupid troll comment on my IG posts or encounter one other troll spewing diabetes myths, I can take solace in knowing that I can take back control of the comments by explaining why they’re wrong or (more satisfyingly) removing them altogether.

How Long Do AAA Batteries Last in an OmniPod PDM?

How long do AAA batteries last in an OmniPod PDM?

The answer to this question has subtly haunted me for years.

My PDM is the only device in my diabetes management kit that actually runs on batteries. Everything else, such as my Dexcom receiver and my blood sugar meter, can be recharged, which is highly preferable over batteries. But until I make the transition to the OmniPod DASH system (which uses a rechargeable lithium battery in lieu of AAA batteries), I’m stuck with replacing the AAAs in my PDM whenever they drain.

But it was never overly clear to me…how do I actually know when the batteries are out of juice?

Just by looking at the battery display, you’d think that I’d need to swap out the AAAs A.S.A.P…but I discovered that isn’t the case.

There’s a battery icon on my PDM, of course, that shows roughly how much life my batteries have left in them. When new batteries are put into the PDM, it shows a fully charged battery. Some time after that, the battery icon is half full, and then after more time, it goes down to a tiny sliver to indicate the batteries are running low.

Ever since I became an OmniPod user, I always assumed that the batteries had to be replaced as soon as the display ran down to that itty bit of battery life. I just figured that was the signal. Plus, I didn’t want to run the risk of delivering a bolus or changing my pod only for my PDM to completely die halfway through, leaving me to figure out how much insulin I had left to deliver – or worse, with a pod not fully activated that I’d have to scrap.

For a long time, though, I’ve been wondering if I’ve been changing the batteries prematurely. Maybe they had more life past that little sliver. So I put my theory to the test: Last month, my PDM displayed the low battery icon. Instead of changing the batteries immediately, I decided to wait and see what would happen.

And I can report that my batteries did last much longer after that initial low battery icon appeared. In fact, they lasted an addition 7-8 pod changes (I lost track after the first handful). I was pleasantly surprised to discover that my PDM could make it almost an additional month past that first indication of a low battery! And even better, I learned that the system does give a warning that makes it crystal clear when the batteries should be changed: The battery icon goes from having a tiny bit of life left to a flashing display showing a completely empty battery. I forget what the exact message was on my PDM, but I also got a system notification telling me to change my batteries soon.

I wish I remembered exactly when I changed the batteries last, but if memory serves me correctly, then it was sometime in November. So the AAA batteries in my OmniPod PDM lasted roughly three months.

Not too shabby, and now I know exactly when I can expect to change my PDM batteries.

3 Things I Want the World to Know About Insulin

This post was originally published on Hugging the Cactus on March 13, 2020…coincidentally, the first day of the pandemic that I started to work from home. I decided to repost it today because even though so much has changed in the last 365 days, the fact that so many people know so little about insulin remains the same. I think that if the world knew these 3 things about insulin, then it would go a long way in understanding how it is vital to most types of diabetes care and treatment, and people might finally realize that something must be done about insulin accessibly and affordability.

See that tiny glass vial in the below image? Can you believe that the contents of it are extremely precious?

Can you believe that, at approximately $9,400 per gallon, insulin is ranked as the sixth most expensive liquid in the world?

It’s kind of crazy, right? But besides knowing that insulin is priced outrageously, there’s actually a few other things that I think the world should know about insulin.

Ethan Zohn_ A Survivor Contestant Who Inspires-2
Did you know that insulin is the sixth most expensive liquid in the world?
  1. Not all insulin is created equal. Just like diabetes, insulin exists in various forms. Besides liquid insulin, there’s also inhaled insulin (Afrezza). And some people with diabetes may even take oral medications that are designed to help increase the effectiveness of insulin that they either receive via injection or produce on their own. There’s brand-name insulin produced by several drug manufacturers (the big three being Eli Lilly, Novo Nordisk, and Sanofi) as well as generic versions of the drug…but that doesn’t mean that generic insulin works just the same as brand-name insulin for all people with diabetes. Insulin is complicated and different types work better for different people.
  2. Insulin is incredibly sensitive. Take one look at the vial in the above photo and tell me that the insulin inside it is safe at all times. Nope, it sure isn’t! Besides the packaging being super fragile, people who rely on insulin must also be careful to keep it at the proper temperature at all times. All it takes is dropping the vial once or leaving it in an unstable environment for the insulin to be rendered useless, potentially wasting a few hundred dollars. It’s as volatile as it sounds.’
  3. Taking too much or too little insulin is dangerous and life-threatening. For some people, there can literally be a life-or-death difference between one unit of insulin. Too much can cause blood sugar to plummet and a person can experience severe hypoglycemia that may result in shock. Too little insulin has the opposite effect: A person will experience hyperglycemia that can have ranging consequences, some that are minimal/temporary, others that are very serious. That’s why precision is so important when dosing for insulin; on top of that, nobody wants to waste a single drop of the stuff because it is so expensive. But this is what many people with diabetes need in order to survive.

So when you see the hashtag #Insulin4All or hear someone talking about how overpriced it is, you’ll know some of the basic characteristics about insulin that make it invaluable to people with diabetes. Perhaps you’ll be inspired to join the fight to make insulin affordable and available to all – as it should’ve been to begin with.

How I Did My Part to Help Prioritize All Types of Diabetes as it Pertains to COVID-19 Vaccination Rollout in My State

Across social media, I keep seeing the same type of photo pop in my feeds that sparks jealousy, triumph, fear, confusion, and hope all at once: the COVID-19 vaccine selfie, fondly referred to as the “vaxxie”.

I’m beyond happy that dozens of family members and friends have received the vaccine. It makes me feel good to know that they’re doing their part to help protect themselves and others, and it’s wonderful to know that the vaccine is being distributed to some extent.

However, I take issue with part of the distribution plan in my state.

Using my voice to hopefully change/improve the rollout of the vaccine in MA felt good.

In Massachusetts, COVID-19 vaccine rollout has been chaotic, to put it mildly.

It’s probably similar in many states, but the part that I find most frustrating is the fact that people with type 1 diabetes (and seemingly no other co-morbidity) are being lumped together with the last group of individuals to be vaccinated.

My endocrinologist confirmed this for me the other day during my virtual appointment: “Why is it [presumably her computer system] showing you in phase 3? You should be in phase 2…” I nodded vigorously and we talked for a few minutes about how disconcerting the whole vaccine rollout plan is. I explained to her that the Massachusetts chapter of #insulin4all was coming up with language to email to local representatives to implore them to do everything possible to prioritize vaccination for all people with diabetes, and a couple days later, I got my chance to do just that.

I looked up my local and state representatives with a quick Google search and emailed three individuals who are in positions to revise public guidance regarding COVID vaccinations. As soon as I hit “send”, I felt this amazing sense of empowerment – it felt good to do something about an issue that I’m very passionate about.

While I wish that I could do more to ensure change, I do feel a sense of pride that I tried to do something by using my voice. It represented the first (but certainly not the last) time that I plan on contacting legislators to help improve diabetes care, management, and accessibility of supplies – not just for myself, but for all people living with diabetes.

This Valentine’s Day, Spare a Rose and Save a Child

Like so many other things, Valentine’s Day is probably going to look and feel a little different to you and your sweetie this year.

But not everything has changed. One thing that remains the same is the fact that a bouquet of a dozen roses is practically synonymous with the holiday.

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 support a child living with diabetes in a less-resourced country?

I bet you wouldn’t mind getting one less rose in that case.

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

This Valentine’s Day, please consider sparing a rose. 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 written about the Spare a Rose campaign for the last few years because I think 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 face of a global pandemic, it’s more important than ever that we do all that we can to help people with diabetes access life-saving supplies and care.

Spare a rose and save child this Valentine’s Day.

On a Scale of 1-10, How Satisfied Are You with Your Health Insurance Plan?

The title of this blog post is a question that I was asked on a phone call with a member of my healthcare team. And the answer to it really stumped me.

On the one hand, I am extremely grateful to be employed with a workplace that offers a few choices in terms of a healthcare plan. I know that there are many Americans who are not as lucky as me and either struggle to afford medical care as needed or lack a job and/or health insurance altogether. It feels selfish for me to complain at all about my health insurance because I should just feel lucky to have it, period.

If you were asked this question, how would you answer it?

On the other hand, I’d be lying if I said I was 100% satisfied with my health insurance plan. I pay a lot of money out-of-pocket to cover the costs of all my diabetes supplies. I try to help mitigate the expenses by contributing to an FSA account, but it doesn’t do anything to lower the actual costs of my supplies: It just means that I save an amount equal to the taxes I would have paid on the money I set aside.

So when I was asked how I’d rate my health insurance plan using a scale of 1-10, 1 being the worst possible plan and 10 being the best possible plan, I didn’t know which side of the argument I should go with. I know that I certainly don’t have the worst plan – for the most part, I’m able to freely choose things like which insulin pump I want to use and which doctors I want to see – but I definitely don’t have the best plan. To me, the best plan would mean I don’t pay anything for the medications and supplies that I need in order to live, so I absolutely wasn’t going to give it a 10 rating.

Ultimately, I answered the question by giving my health insurance plan a 3. I am dissatisfied with the amount of money that I need to pay and wish that my plan would shoulder more of the costs, but the plan earns a few points for the flexibility it gives me in terms of who I see for doctors and for being consistent in the last couple of years that I have spent on it.

As I said the answer out loud, I couldn’t help but think and dream about the day that I might be able to give a health insurance plan a 10 because it covers all medical costs, is easy to understand, and provides freedom to choose any medications, devices, and doctors that I want. It’s a hope that I have not just for myself, of course, but for all Americans.

I hope that day comes sooner rather than later.

What I Learned About Legislation and Action for the MA Chapter of #insulin4all

Last month, I wrote about how I decided to join my state’s chapter of #insulin4all because I’ve been upset about the high costs of insulin for awhile now, and I want to do anything I can to help make it more affordable…not just in Massachusetts but all across the U.S., and even in the world.

Our first meeting was introductory, but the second one focused on legislative action.

Truth be told, I wasn’t exactly stoked on this topic because, well, I don’t find law-making particularly interesting. I always imagine a bunch of stuffy middle-aged white men sitting in a room and arguing about section X of law Y and I’m sorry, but…yawn.

However, I was surprised by how much I took away from this meeting that recapped the current state of legislation and action for the MA chapter of #insulin4all. Here are my big takeaways:

  • There’s a lot that one person can do in order to help make legislative change. It goes beyond contacting local legislators – an individual who offers their time, resources, and voice can do so much by learning the legislative process, attending hearing or floor sessions, testifying, and acting as a resource to legislators. As a person with diabetes, I have stories and knowledge to share that can help legislators really understand what a person with diabetes experiences and needs…and that in itself is a powerful tool.
Access to insulin is a human right that, unfortunately, we have to fight for.
  • Attempts at change have been made…and tabled. One piece of legislation we talked about extensively during this meeting is Kevin’s Law, which is named for Kevin “Howdy” Houdeshell. He passed away in 2014 from rationing insulin, after he was unable to refill his prescription for insulin due to his prescription being expired and the unavailability of his doctor due to the New Year’s holiday. This law would allow for pharmacists to dispense a chronic maintenance drug such as insulin to a patient without a current prescription in limited circumstances. In Massachusetts, the bill was reported favorably by the senate committee last March, but tabled in July due to a variety of factors. On the bright side, a meeting has been scheduled with a recently elected representative who could help revitalize discussions of the bill, so we can be hopeful that change will be made.
  • Public production of insulin is one way to make it more affordable. So this is pretty neat: California is the first state to establish public production of “biosimilars” that include insulin. This article that I’m linking to explains it best, but basically, this just means that the state of California is getting into the generic drug business to prevent price gouging and fight back against big pharma. But what’s really cool and exciting to me is that Massachusetts may be just as capable (in other words, have just as much market power as California) to produce generic insulin, too. MassBiologics is a non-profit, FDA-licensed manufacturer of vaccines that could also potentially produce insulin. Though I did a quick search and couldn’t find much on the matter, it’s a fascinating concept that could make insulin much more affordable in Massachusetts.

And those are just a few of the key points we covered in the meeting. I left the Zoom session feeling so much more informed as to how legislation works in the state of Massachusetts, and the steps that I can take to make changes not just as an individual, but as someone working with a motivated and knowledgeable group like the MA chapter of #insulin4all.

Reflecting on 2020

2020. What a year, am I right?

This blog post is NOT going to be a recap of how “unprecedented”, “historical”, “chaotic”, or “uncertain” this year was – we all know exactly what it was like and we most definitely don’t need a summary of it.

Instead, this post is going to be a short reflection on some of the cards I was dealt with this year…

What exactly did I do in 2020?

Well, for starters, I made one of the most heart-wrenching decisions of my life to move back home last January.

In February, I was trying to heal from the damage caused by this decision.

And then, well, March happened, and suddenly nothing was certain.

I stumbled through April and May along with the rest of the world, trying to adjust to this “new normal” (I promise I won’t be using that phrase again in this post).

I flailed into the summer months, a time in which it seemed like things might be getting better, only for a bout of depression and anxiety to darken the light at the end of the tunnel I thought I had seen.

In September and October, I chose to dip my toes back into adulthood. By November, I was moving into my new place and getting used to living on my own.

Now it’s the final few days of December and I’ve got a dog (more on that in a future post) that’s joined me in my home, making it a little less lonely.

I’m marveling how in all the changes, challenges, and emotional upheavals lead me to this place that I’m in – and I’m not referring to my dwelling.

Normally, I try to go for bold and bright colors on photos for my posts, but this solemn black and gold scheme felt right with the theme of this post.

I’m talking about this new mindset – one that I haven’t quite defined yet, but one that has developed because of my determination to get through all of the above and still somehow maintain a good grip on my diabetes (and regularly keep up with this blog, to boot).

Please don’t mistake all this self-reflecting as tooting my own horn; in fact, I struggled for weeks as to whether I should share any of this. (Funny how my diabetes is less personal to me than, well, my entire personal life.)

I guess the point of this post, though, is to finally catch my breath and let everything I’ve accomplished and survived this year to sink in…and you should allow yourself that moment of recognition, too.

I doubt there’s a single person on this earth who can truly say that they were untouched in some way by any of the events of this year…so now that we are about to put 2020 into the past, I say that we all deserve to take some time and think about how we’ve adapted to everything and find some sort of joy in that – especially if you’re someone who also deals with anything like diabetes on a daily basis.

I’m not naive enough to think that everything will go back to the way it was “before” the second the clock says 12:01 A.M. on New Year’s Day, but I am hopeful that 2021 will exceed 2020 in many ways. And hope is a good thing to hold onto in times like these.

Happy New Year to all my Cactus Huggers, online friends, and IRL loved ones alike.

500 Blog Posts Later…

You know how in Spongebob Squarepants, title cards are held up every so often in episodes to depict the passage of time?

Imagine me holding one up now and saying in the Spongebob narrator voice: “500 Blog Posts Later”…

I can’t believe I’ve hit 500 blog posts published on Hugging the Cactus…all in the span of a little more than 3 years.

I wish I could claim this super tidy desk as my own; alas, it’s just a stock photo…my actual desk is quite messy.

Most of these posts I’ve written and posted here exclusively. A couple posts have appeared on sites like Beyond Type 1. A dozen or so posts I’ve shared twice because I either especially liked them or wanted to revisit something I’d written years ago. And a handful more posts were written by others for organizations like T1International and shared here because of their powerful messages.

I’m quite proud of this 500 post milestone and want to give credit…not to myself for it, but to you, and to the other writers and individuals who have helped me get this far.

Without YOU reading my posts and commenting, my desire to keep sharing and writing would wane.

Without other writers and individuals, I’d lack inspiration and perspective that are key to keeping this blog as interesting as possible.

Support means the world to me when it comes to managing diabetes, and as it turns out, when it comes to managing this blog, too. So thank you for yours.

I hope you continue to come back to read the next 500+ blog posts.

Merry Christmas!

This is my site heading all monthlong and it never ceases to crack me up…hence, my overuse of it!

Dear Reader,

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.

Have a beautiful day, my fellow Cactus Huggers.

Warmly,

Molly