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.

My First Virtual Endocrinologist Appointment

My first-ever virtual endocrinologist appointment – and my first one of 2021 – took place last week. I’m going to sum it up list-style, because who doesn’t love a good bullet-point list?

  • It was strange. I didn’t think I would be weirded out by having my endocrinologist “in” my home, but it was freakin’ bizarre to see her face show up on the monitor that I do my day job from, that happens to live on a desk in my bedroom.
  • I had to wait to see my doctor. It took almost 10 minutes for me to receive my pre-appointment check-in call, and another five before my doctor actually joined. That felt normal.
  • We made a single change to my pump settings in the whole appointment. She suggested a solitary tweak to my correction factor. I’m not sure I agree with said change, but we’ll see how I feel about it over time.
Look, it’s actually me in the virtual waiting room! Smirking at the camera and everything! Thank goodness my doctor didn’t join at this moment…
  • My lab results were barely discussed. My doc mentioned that my cholesterol was a little higher than it was last time, and I unabashedly told her that this was probably because I hit the drink somewhat harder than I used to in the past (sorry not sorry, I like wine). I brought up my A1c and I said I was proud of myself for achieving it, and she just nodded, otherwise disregarding this data point.
  • We figured out which prescriptions I needed. When she asked about my supplies, I explained to her that Dexcom is no longer shipping sensors and transmitters to me directly and they want me to use another supplier called Byram (more on that in a future post). I asked if she could send my prescription to my regular mail-order pharmacy instead, and she obliged, telling me to double-check on the script in a few days to make sure it would go through properly.
  • It was just as short as they typically are. The whole damn appointment lasted only 15 minutes and 2 seconds…and we talked about me/my diabetes, specifically, for fewer than 5 minutes. We spent the rest of the time discussing our collective confusion over my COVID vaccine eligibility and my frustration over my postponed physical. It was both gratifying and dismaying to discover that she couldn’t understand why the state of Massachusetts considers me ineligible to receive the vaccine until the third (final) distribution phase, but I’m hoping that will change soon.
  • She wants to see me again in 6-7 months. My doctor ended the appointment by asking me to schedule an appointment in the August/September range, which seems so far away. I let her know I’d schedule it at a later date for a couple of reasons, one being that I have no clue whether I’ll want to go in person or do it virtually again, and another being that I really don’t know that I want to keep her as my endo.

That just about covers it. I’m not the happiest patient in the world – I’ve been uncertain about this doctor since I started seeing her – but for realsies, I’m glad that I trusted my instincts and requested a virtual appointment instead of an in-person one.

The drive would’ve been longer than the visit, and for me, that just doesn’t make it worth it.

A New Pod in 5 Minutes Flat

I literally just got off the phone with OmniPod/Insulet as I’m writing this post.

I jumped on the computer right away because I was so impressed with the speediness of their customer support team.

Normally, I only call customer support to report the occasional pod failure. I had my first one of the year over the weekend, so I made some time during the week to give them a call and tell them about it.

I’m used to being hit with all kinds of questions when I call customer support: Where were you wearing the pod? What were you doing when it failed? How long were you wearing it for? What kind of insulin were you using in it? What’s your date of birth/shipping address/Social Security Number? (Okay, they don’t ask about that last one, but they need so much information from me that they might as well get that, too!)

This time, after I verified my shipping address, I was simply asked to rattle off the alarm code that triggered this pod failure, and state approximately how long I wore the pod.

That’s it.

I couldn’t believe how quick and easy it was to get a replacement pod.

Just a couple easy questions that I could answer straightaway because I had my PDM on hand (I always do when calling Insulet because 9 times out of 10, they’ll need information from it). The rep I spoke to on the phone just had one final question for me: Did I mind ground shipping for the replacement they were going to send to me, or did I need them to overnight it?

I let her know that standard shipping was just fine, and then I felt compelled to tell her that I was appreciative of her swift solution and professionalism. She thanked me and also clued me into the fact that Insulet’s worked hard to streamline the number and type of questions asked when customers call in, which made someone like me doubly happy.

I thanked her for her help again before hanging up the phone. Then I noticed: The length of our phone call was just under 5 minutes. It takes me a bit longer than that, on average, to apply a new pod.

In 5 minutes flat, a replacement pod was on its way to this satisfied customer. It’s nice to know that when pod failures happen – they do, and they will happen again – it’ll be much easier going forward to get them replaced.

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.

The Truth About My Carb Counting

One of the many reasons why I love the diabetes community is that I’m constantly learning new information, finding inspiration, and enjoying support from my fellow friends living with T1D. Sharing our stories with one another leads to us finding that it’s more than diabetes that we have in common.

Here’s an example: My friend, Cherise Shockley, recently wrote an article for DiaTribe in which she made a confession to herself regarding how she counts her carbs. I recommend reading the extremely well-written article to get a full sense of what she discovered, but in short, Cherise recently realized that her carb counting is inaccurate because of the “glass ceiling” for entering carbs into her pump for bolus calculations. In other words, Cherise’s personal maximum of carbs that she was comfortable with dosing for using her pump wasn’t aligning with the actual amount of carbs she was consuming. This excerpt explains part of it:

That was my moment of truth. I told Natalie I ate my favorite chocolate chunk cookie that day. She asked me how many carbs the cookie contained, and I told her 68 grams; she wondered why I only bolused for 55 grams. I paused before I replied – I did not know the answer.

Natalie then asked me if I had a glass ceiling for entering carbs in my pump. She explained that this means even though I know I eat 63 carbs, I will only enter 50 carbs in my pump because anything higher than that concerns me. What she said was interesting; I had never heard anyone describe it to me in that way.

-Cherise Shockley

When I read this, I said, “Yes! Finally, someone is able to articulate exactly how I handle carb counting!”

This is the truth about my carb counting: I have limits when it comes to how many carbs I will bolus for at a time, but those limits do not apply to the actual number of carbs that I consume.

In my 23 years of life with type 1 diabetes, I never knew the meaning behind my carbohydrate glass ceiling.

To explain, I am only comfortable with bolusing for a maximum of 60 grams of carbohydrate at a time. I do not know how I came up with this particular number, but I do know that there are situations (e.g., holiday celebrations) in which I am absolutely consuming more than 60 carbs in a sitting, and yet I only bolus for that amount.

Still confused by what I mean? Read the full article to understand, but this excerpt from it helps to explain why this fear of bolusing for more than 60 carbs at a time exists for me:

To learn more about carbohydrate glass ceilings and why some people have one, I talked to Dr. Korey Hood, a professor of pediatric endocrinology and psychiatry and behavioral sciences at Stanford University who has lived with type 1 diabetes for over 20 years. Dr. Hood told me that all parts of diabetes management can be challenging, and carb counting is particularly tough because it is hard to be accurate and precise. He always recommends people with diabetes meet annually with their diabetes educator (CDCES) to get a refresher on different aspects of diabetes management, including carb counting.

Dr. Hood said that the glass ceiling is most likely due to one of two issues – worries about hypoglycemia or the meaning behind taking such a big dose of insulin. Dr. Hood said that “many of us with diabetes, particularly those on insulin, worry about going low. Why wouldn’t we – it is a terrible feeling! We often experience fears of hypoglycemia because we had a terrible low in the past and have a desperate desire to avoid it in the future. When we worry about hypoglycemia, we scale back our insulin dosing. This prevents the low but also likely results in high glucose levels. So, it really is not a good strategy.” 

-Cherise Shockley

This was a major revelation for me because suddenly I realized what my reasoning is for my carbohydrate glass ceiling: I have a hypoglycemia fear. I have experienced scary episodes in the past (fortunately, none of which have required medical attention). I have friends who have experienced severe hypoglycemic episodes, and when a colleague of mine experienced a low episode that was so bad that I had to call 911 for him, it left a mark on me. So on the occasions that I do eat more than 60 carbs in a sitting, I simply don’t take the amount of insulin that I should to account for those carbs, and I wind up going high, exactly as Dr. Hood describes in the quote above.

When it comes to diabetes, there is no such thing as “perfection”. My blood sugars cannot and will not be perfect 100% of the time. But one thing that I do have control over is doing the absolute best that I can with carb counting and bolusing. It’s time I hold myself more accountable to my carbohydrate glass ceiling…in fact, it’s time for me to smash through it.

A ginormous thank you to Cherise for being so open and honest in this piece and for inspiring me to own my carbs, too.

My Top 10 Blog Posts of All-Time

I’ve been writing blog posts for Hugging the Cactus for just over three years now. In that span of time, I’ve accumulated more than 500 posts total, and I don’t plan on slowing down any time soon.

Obviously, though, some of those posts have been more popular than others. I thought I’d link to them all here because 1) it’ll be helpful for both my readers and to me to see which topics garner the most interest, and 2) it makes for easy clicking to get to the top articles! So without further ado…

The only thing missing from my blogging location is…a real cacti. I got plenty of fake ones, though!!
  1. Is a Bleeder a Reader? My Take on a Bloody Dexcom G6 Insertion – This is the top blog post of all time (so far) here at Hugging the Cactus. It’s got more than 6,000 views and proves to me that many people who use Dexcom sensors aren’t sure whether bloody sensors indicate an inability to measure blood sugar readings. If you aren’t sure yourself, click the link for my take.
  2. So THAT’S How Long and Sharp the Dexcom G5 Insertion Needle is… – I’m very surprised that this is number 2 on the list, but it is! Who else was slightly horrified by the sheer length of the needle used to insert Dexcom sensors?
  3. My One-Month Dexcom G6 Review – People seem to dig reviews (I know I love reading product reviews online), so it’s pretty obvious why this comes in third place. Plus, I wrote it early on in the release of the Dexcom G6: Due to my participation in the advertising campaigns, I was lucky enough to be among the first individuals in the country to start using the G6.
  4. T1D and Cosmetics: My Thoughts on Jeffree Star’s “Blood Sugar” Palette – I can only guess that this one is a high performer because Jeffree Star is the kind of character who gets a lot of attention online. Still unsure why he named an eye shadow palette “blood sugar” (tacky IMO), but whatever.
  5. That “Thing” on my Arm – What is “that thing” on my arm? Is it a large nicotine patch? A weird new piece of statement jewelry? Or something else? In this blog post, I write about a situation in which I was asked about the “thing” on my arm and how I handled it.
  6. Insulin Pumps and X-rays – I didn’t realize I had no clue what the protocol is when it comes to insulin pumps and X-rays until I actually had a broken bone! It taught me a lesson that I won’t forget about whether or not it’s safe to wear an insulin pump when getting an X-ray.
  7. Restarting the Dexcom G6: Attempt #2 – The Dexcom G6 wasn’t out for long when the diabetes online community started hacking it to figure out whether or not it could be restarted and worn for a longer period, just like its predecessor. It took me a couple of tries, but I finally found a method that sorta works, as described in this post.
  8. How Long Do OmniPods Really Last? – In this blog post, I reveal the true life cycle of an OmniPod…did you already know this, or was this new information to you?
  9. The CGM Experiment: Comparing the Dexcom G5 to the G6 – I remember that people were verrrrry curious about the differences between the Dexcom G5 and the G6 when the G6 debuted. Could it really put a stop to fingerstick checks? Was it more accurate? Was it painless? I compared the two in this post and, hopefully, answered a lot of questions that people might have had about how the G6 measures up to the G5.
  10. The Best (and Worst) Insulin Pump Infusion and CGM Sensor Sites – I shared my opinions in this post on what makes the best and worst sites for my medical devices. If anyone is wondering about trying a new site, chances are I’ve described how I feel about it in this post.

It’ll be interesting to see how this top 10 list changes in the coming months and years. One thing is for certain, though: I’ll continue to do my best to deliver engaging content that is truly helpful or supportive to our diabetes community. It’s my honor to contribute in any way that I can.

A Postponed Physical and the Resulting Questions

“Molly, we’re calling to inform you that your 10 A.M. appointment for this Thursday has been canceled. We still aren’t taking patients in the office and we won’t be rescheduling you until April. Please give us a call back so we can set up a new appointment time.”

I listened to the voicemail twice before it sank in that my primary care doctor’s office was calling me to postpone my annual physical.

Why, exactly, did it get postponed? And how do I feel about it?

My doctor’s office called me two days before I was scheduled to come in…leaving me to also wonder why such short notice of the cancellation?

Well, I can only theorize the answer to the first question. I’m certain that my doctor’s office is absolutely overwhelmed with phone calls and appointments…and they’ve probably been like that for the past year or so. I’m guessing that they’re only keeping appointments with higher-priority patients that absolutely need to be seen…someone like me, a pretty healthy (discounting my diabetes) and younger individual, is likely not very high on the list of patients they want to see. Plus, even though I know they’re doing virtual appointments for medical questions as they come up, there probably is no purpose in doing a virtual physical because there’s only so much they can do via video call. So I get the postponement, but that doesn’t mean I’m happy about it.

My annual physical is the doctor’s appointment for me, the one that I have each year that I know won’t be a total waste of time. Each year, I get my blood work and urinalysis completed at this appointment, as well as an EKG to monitor my heart. I also get to go over any general health concerns I have with my PCP, who is very thorough when explaining things to me. During this particular visit, I’d hoped to talk about (what I believe to be) the stress-induced hives I’ve experienced in the last month, but now it sounds like I won’t have the chance to do that until April.

But I’m also wondering…when I go to the appointment in April, will I receive my COVID vaccine then, too?

I messaged the doctor’s office to find out and learned…nothing helpful:

I believe by that time you should qualify for the vaccine so you should be able to get it. This of course depends on if the state has given us the vaccine. We will know soon about that and will be sending information to all our patients. 

Uhh…according to the multi-phase vaccine plan outlined by the state of Massachusetts, I should be eligible for the vaccine prior to April. (But quite frankly, the whole phase plan has been a bit of a hot mess. I’m just glad to have 2 out of 4 immediate family members vaccinated at this point.) And the “if” there? Definitely unsettling.

I have so many questions: Can they postpone again in April? When will they be able to tell us more information about the vaccine? Do they think that it’s safer to wait in April because there will hopefully be more vaccinated individuals overall then? Or are they actually worried about vaccine distribution and don’t want to clue anyone into that?

So I feel not-so-awesome about having to wait three more months to check in with my PCP. I take my overall health very seriously, not just my diabetes. One thing has everything to do with the other. However, I do have a virtual appointment with my endocrinologist in a few weeks…maybe that will be the health check-in that I’m desiring?

I’m not banking on it, but I’m hopeful.

This Time Last Year…

This time last year, I was under the impression that I’d be heading to the Friends for Life Orlando conference that is held each July.

It was supposed to be my “triumphant return” to in-real-life diabetes meet-ups. There were so many individuals I’d hoped to either reunite with or meet for the first time.

Obviously, the pandemic totally changed my plans – as well as everyone else’s.

I was upset for awhile, but took consolation in the fact that the FFL team worked hard to turn it into a virtual conference. IMHO, I think they did an excellent job, and I remember signing off from that one feeling hopeful to attend it in-person in 2021…

This time last year was supposed to go a little differently.

…except I just don’t think that’s going to happen for me this year.

As far as I’m aware, the CWD FFL Orlando conference is on and in-person for 2021. But I, personally, am not comfortable attending. I know this won’t be the case for everyone and that’s okay. Yet I still feel compelled to explain why I’m not going to attend and how this makes me feel.

I don’t feel good about traveling, well, anywhere these days. I have a lot of anxiety about it, so much that any type of getaway, as nice as it sounds right now, just wouldn’t be worth it in the end because of how much worry I’d have about the trip.

And of course I’m sad about this. Of course I want to escape somewhere, and OF COURSE I’d love the chance to see my diabetes community in person. I find that in-person interactions are so much richer and fill me with a sense of gratitude and camaraderie that just can’t be matched online. Plus, I feel that it’s much easier to forge genuine connections when interacting with others face-to-face…I struggle to keep up with all the tweets, Instagram posts/stories, and Facebook threads, so instead of trying to weed my way through them all, I typically just don’t engage whatsoever. I simply can’t find enough time to comment as much as I’d like, which means that I miss out on some great opportunities to satisfy my need for conversation with the diabetes community.

As much as my decision not to attend bums me out, I do take some solace in knowing that there are others in the same boat as me. And I also feel reassured thinking about how hopefully, this time next year, I will be planning my true comeback to the wonderful world of diabetes conferences (in the wonderful world of Walt Disney, to boot).

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.

The Best Breakfast for my ‘Betes

I have a new favorite breakfast, both blood-sugar-wise and taste-wise, that I just had to write about here.

And that breakfast is: egg wraps! I take a low-carb spinach and herb tortilla, add eggs, sprinkle on some cheese, tuck in some turkey sausage or a scoop of guacamole, and wrap it all up for a totally delicious, lower-carb meal that I honestly can’t get enough of these days.

I love how surprisingly versatile this breakfast wrap is. I can lighten it by using scrambled egg whites in place of eggs with yolks, I can season it however I want (though my preference is everything but the bagel seasoning), and when I’m feeling spicy, I can add a few shakes of garlicky hot sauce for some zip. When I have fresh veggies, I’ll add those to the wrap, too, for some more color, flavor, and texture. Sprouts are really great in this kind of wrap, as is spinach or even chopped onions and peppers (I like cooking frozen ones with my eggs because they’re easy to have on hand at all times).

You’re probably wondering why I didn’t take a picture of my wonderful wraps for this posts and well…I ain’t a food blogger, I take awful food pictures! So just pretend this photo is a perfect representation of my new fave breakfast. Please and thanks. 🙂

So obviously this wrap is a winner in terms of taste, but it’s really excellent for my blood sugars, too. I don’t typically bolus for more than 15 carbs for this meal (the wrap is only 4 net carbs and everything else that I add in has negligible carb content OR I just bolus for the protein) and the low glycemic index means that I never see a blood sugar spike after eating one of my wraps. And let me be real: I love my breakfast carbs (waffles, pancakes, muffins, even cereal…omg they’re all amazing to me), but they’re a pain in the ass to bolus for properly. Even when I do nail my bolus for a high-carb breakfast item, I’m not always able to do a pre-bolus (in other words, take insulin 15-20 minutes before I eat to give it time to start working ahead of the carbs) and avoid that carb-induced spike…which means I end up skyrocketing shortly after I eat, only to level out later. That’s not the worst thing in the world, but I’d prefer to not experience any sudden blood sugar jump, period.

Need I sell the benefits of this breakfast any further?! Knowing myself, I’ll have a new morning staple before too long, but for now I’ll *wrap* up this blog post on my *eggs*cellent breakfast wrap before I get too *cheesy* with the puns…

…Okay, okay, I’ll see myself out now.