Don’t Feel Sorry About My Diabetes

This blog post was originally published on December 17, 2018 at Hugging the Cactus. I decided to repost it today because this is something that will ALWAYS be relevant – in fact, someone just said to me earlier this month that they are sorry I have diabetes! I wish people would stop apologizing for something that nobody can change, and something I accepted long ago…read on for more about why I never want people to feel sorry for me because I have diabetes.

Today’s blog post is going to be short and sweet, and about a subject that I think every person with diabetes deals with whenever they tell someone new about their diabetes.

It doesn’t matter how diabetes comes up in conversation. Whether it’s in a joking, serious, educational, happy, sad, or angry manner, the person I’m talking to almost always says…

“I’m sorry.”

I’m not sorry that I have diabetes, so you shouldn’t be, either.

Sometimes, I think it’s because society has instilled this weird reflex in people to apologize for something that they didn’t do. Other times, I think it’s because people just don’t know how else to respond to something that may be sobering or grounded in reality. But the simple fact of the matter is…

People need to stop apologizing to me, and other people with diabetes, for having it.

Here’s why:

  1. It doesn’t make sense.
  2. We weren’t given a choice – it’s a simple truth that we’ve learned to accept.
  3. It makes me feel strange, because it’s almost like the other person is taking accountability for my diabetes.
  4. I believe that human beings apologize too much, in general, and it diminishes apologies when they matter most or are most sincere.
  5. I’m not sorry that I have diabetes, so why should someone else be?

While I genuinely empathize with and appreciate people who apologize as a knee-jerk response, I’m just here to gently tell them that it isn’t necessary. Save “I’m sorry” for times that it’s warranted, and not for something like having diabetes, a matter in which no one has a choice.

How Keeping Constantly Busy Helps (and Hurts) My Diabetes

I don’t fare well when I have too much idle time.

I’m the type of person who needs to stay as busy as possible: I like being productive and having the satisfaction of saying that I’ve accomplished something each day. That doesn’t always mean that I’m successful, but I do my damnedest to make sure that I check off at least one item from my to-do list on a daily basis.

And I don’t like saying “no” to others, so whenever someone asks for my help, I’m on it. It doesn’t matter if it’s a family member, close friend, or an acquaintance – I do what I can when I’m called on for help, and as you might be able to imagine, this is both good and bad for me.

How Keeping Constantly Busy Helps (and Hurts) My Diabetes
Who DOESN’T love the satisfying feeling of checking items off from a to-do list?!

In terms of diabetes management, it’s great because when I am particularly busy, this means that I’m probably not sitting around a whole lot – the constant go-go-go makes my blood sugars pretty happy. Plus, having a packed schedule keeps my mind occupied when I need to think about something – anything, really – other than my diabetes. If I’m having a tough diabetes day, I don’t have to dwell on it; instead, I have tasks X, Y, and Z to do. If I’m waiting for a stubborn high blood sugar to come back down, then I can start working on a project rather than stare at my CGM for the next hour. 

So in this way, keeping myself busy is a fabulous way to take my attention away from diabetes when I desperately need the mental break from it…but it’s also harmful at times, because let’s face it, there are many times in life where I really do need to concentrate on my diabetes care and management.

Whether it’s a big or small task that I’m working on, I put 110% of myself into it, which means that I really don’t have extra thinking room for my diabetes. Some examples of times that I’ve been far too lost in what I was doing to give diabetes a second thought are when I’ve been in the middle of a knitting project and my Dexcom is went off but I actively ignored it in order to keep my focus on whatever row I was working on (and my blood sugar stayed higher for longer than it should have), or when I should’ve taken a break from writing social media posts for my friend to eat something because my blood sugar needed it, but I just wanted to finish the job first.

Now that I’ve figured out how my diabetes is helped and hurt by my jam-packed days, will I continue to stay constantly busy? The answer is definitely. But I will also try to remember the importance of balance in order to keep my diabetes at the forefront of my mind in a healthy manner.

Hugging the Cactus Turns Three!

On October 2, 2017, I publicly shared this blog for the very first time.

Oh, how much has changed in three years…

…heck, a lot’s changed in the last year alone!

Forget everything that’s been going on with the world since 2020 began – that would be a very depressing laundry list – I’ve personally experienced so much change in the last 10 months that it makes me dizzy when I stop to really process it all…but here’s a quick glimpse at the life transitions I’ve dealt with throughout the year (some of which I’m keeping deliberately vague because they’re painful to write about):

  • Made a major move
  • Mourned the hardest loss of my life
  • Said goodbye to a physical office location for my job
  • Dealt with depression and anxiety
  • Made the biggest purchase of my life so far

Yeah, it’s been quite a year so far. Not just for me, though: It’s been a doozy for all of us. I guess we can take mild comfort in the fact that we’ve all struggled together.

But on a more positive note, in this year of enormous, earth-shaking change, I’ve had a constant in this blog and the diabetes community.

Seems like I was anxiously anticipating the launch of my blog just yesterday…hard to believe it’s been 1,095 days.

I’ve taken solace in blogging and sharing stories three times each week. I’ve enjoyed seeing comments from regular and new readers alike. I’ve relied on the consistency of the diabetes community: its strength, knowledge, resilience, and of course, support.

So as Hugging the Cactus celebrates its third birthday, I remain grateful for its existence as my platform to connect with others, make new discoveries about my diabetes, and learn from it all in order to live the healthiest and happiest life possible.

Happy 3rd birthday, Hugging the Cactus!

My Guide to Navigating Diabetes and Research Studies

I’m about one month into a study that involves T1D subjects and it’s been interesting, to say the least.

As far as I’m aware, nothing prevents me from going into more detail on what this study is, but I’d prefer to err on the side of caution and just provide the basics: It’s a 90-day study that requires me to wear a FitBit and answer two daily surveys about my sleep and exercise habits.

This isn’t my first rodeo with a diabetes-related study; in fact, I’ve done a dozen or so over the years with varying degrees of involvement. This might be the most intense one yet, though, because of its duration (most diabetes studies I’ve done have lasted a couple hours, at most). Since it is a more thorough study, it’s got me thinking about how I go about handling my diabetes when taking part in studies. Here are my tips on how to navigate the two in a way that reflects proper diabetes management as well as preserves the integrity of a given study.

It can be trickier than it initially seems to navigate around diabetes issues when participating in a research study.

Research the legitimacy of the organization conducting the research. I make every effort to find out who, what, when, where, why, and how the researchers will benefit from my participation. If it’s a well-formed study, then it’s pretty easy to find out all of this information because the organization will lay it all out before I can even sign up to be a participant. In my opinion, a research study that doesn’t tell participants what their data will be used for isn’t one worth doing.

Decide what I’m comfortable and not comfortable with sharing. Some studies can be quite…nosy when it comes to certain information. In the name of research (and ONLY in the name of research), I’m comfortable sharing some data like my weight, height, and even my A1c. I’m a little less cool with sharing, say, my entire medical history, and by that I mean that I wouldn’t do it. Some things I simply prefer to keep private so I always check in with myself before signing up for a study to make sure that I keep my comfort levels a priority.

Don’t be ashamed to ask about incentives. I can’t be the only one who has done a study in order to earn some quick cash. In keeping with the above statement about comfort/privacy, though, I haven’t done a study that I wasn’t comfortable with just to make money. But it’s definitely highly motivational when I’m in the process of learning whether I’m eligible for a study, and having a tangible reward given to me for my participation is inarguably nice.

Stop worrying about being judged for my diabetes decisions throughout the duration of the study. If I’m in a study that’s asking about my last 3 months’ worth of blood sugar levels or my last 6 A1c readings, I have to remind myself that I won’t be judged for the answers that I provide. After all, the researchers aren’t there to pat me on the back for doing a “great job” at “controlling” my diabetes or to scold me for not taking better care of myself. They are there to collect cold, hard data. So it’s important for me to remember that whether I’m an outlier, top-data-point, bottom-data-point, or something in between, it doesn’t make me any less of a human being with type 1 diabetes who tries her best each day.

Embrace the unique opportunities to make a difference. Not everyone I know has the chance to participate in research studies, so I view any research being done on type 1 diabetes specifically as a unique way for me to contribute to new discoveries (and possibly even a cure). Deep down, I’m a bit of a science geek who truly appreciates the methodology behind studies and experiments, so I really do think it’s special that I get to be a subject in some real-life research.

Why I Decided to Get Baqsimi (and How I Got It)

Say hello to my new little friend…Baqsimi!

For anyone who may be unfamiliar with Baqsimi, it’s a relatively new form of glucagon that comes as a nasal spray. I haven’t had to use it yet (and I hope that I don’t ever have to, really), but there’s a lot of pros to Baqsimi when comparing it to a traditional glucagon kit:

  • It’s shelf-stable – it doesn’t have to be refrigerated.
  • It doesn’t expire until 2.5 years from now.
  • It’s completely ready to go as-is, no mixing or measuring needed.
  • It’s compact and totally portable.
  • It’s easy to use (and understand how to use!).
Baqsimi is incredibly easy to use: remove shrink wrap, insert into nostril, and push plunger all the way in to dose. That’s it!

All of those factors contributed to my decision to finally pull the trigger and ask my endocrinologist about writing a prescription for me. It’s not that I’m suddenly worried that I’ll need Baqsimi; for me, it’s more of a peace-of-mind situation. I always thought that my glucagon kit was next to impossible. Sure, I know how to use it, but I have to refresh my memory every so often because there are so many steps involved in the process: inject the syringe into the vial, mix the contents, wait for the glucagon to turn clear, stick the syringe back into the vial, withdraw the liquid, and then finally do the injection…there’s a lot going on there. And if I actually did need glucagon one day due to a severe hypo, I wouldn’t exactly be able to easily walk whoever I was with through the process because I’m sure I’d be totally incapable of doing so (depending on how bad my symptoms were).

It’s just a lot to ask of every single one of my family members and friends to know exactly how to inject glucagon into me in the event I ever needed one of them to do that, so having Baqsimi on hand takes so much of that fear and anxiety away.

And the icing on top of the cake is that it was super easy for me to get Baqsimi…like, it only took a few hours, which is amazing. All I did was reach out to my endocrinologist’s office using their online messaging system, ask my doctor for a script, and…bam. It was sent into my local pharmacy, and before long, I was cruising through the drive-thru with my dog to pick it up. I’m lucky, too, because all I had to pay was $25, thanks to my insurance (sometimes, it’s not as bad as I think it is).

Twenty-five bucks for peace of mind and a life-saving medication…that’s something I can get behind. I’m glad Baqsimi has finally joined my diabetes toolkit.

Diabetes Detective Work: Solving the Mystery of Prolonged High Blood Sugar

When it comes to solving the mystery of why I recently experienced high blood sugar for a prolonged period of time, let’s just say I was a wannabe Sherlock Holmes.

I’m going with “wannabe” here because I lacked the satisfaction of deducing the exact culprit, but at least I had my wits about me enough to come up with a few reasonable explanations.

Diabetes Detective Work_ Solving the Mystery of Prolonged High Blood Sugar
I wish that a magnifying glass was all it took to figure out the “why” situations in life with diabetes.

The scenario: I was riding between 200 and 250 for hours. I did a temporary increase of my insulin for a bit, took 2-3 micro-doses of insulin (in order to avoid stacking), and did my best to stay hydrated while avoiding carbs. And I barely budged, much to my frustration. All throughout dinner that night, I was anxiously eyeing my Dexcom and hoping to level out before long. It was only after I went on a 45-minute after-dinner walk that I started to drop, and it took me quite a while longer than usual for me to be totally back within range.

The questions: Did my mid-afternoon pod change throw something off? Was my carb counting wrong? Was it something I ate? Was my pod working the way it should’ve been? Did I get enough exercise throughout the day? Too much? Was it due to anxiety or stress? Some other factor that never even crossed my mind?

The clues: A couple of clues helped me eliminate the cause of the high blood sugar. For starters, it couldn’t have been the insulin – it’d been refrigerated and I’d been using the same vial for a couple of weeks without any issue. It also likely wasn’t either of my pods, because the one I’d worn for the full 3 days had worked fine, and the new one that I applied mid-afternoon did work for the full 3 days…even though it seemed to take some time to adjust to my body. I definitely didn’t eat the healthiest meal (my entree may have been a green salad, but I also ordered a sugary cocktail and had fried pickles as an appetizer). And I was dealing with slightly higher levels of stress than usual.

The case cracked (sorta): All of those aforementioned conditions combined could have contributed to the high blood sugar. Unfortunately, I can’t quite say with certainty that they did, because on paper, I did everything right in order to combat the highs. That’s just the thing with diabetes, though: You can do everything “perfectly”, and the way it “should” be done, but sometimes you can’t prevent these little mysteries from popping up and keeping life with diabetes…ah, well, “interesting”.

My Pharmacy Mailed Me a Broken Vial of Insulin. Here’s How I Handled It.

As soon as I opened the package, I knew something was wrong.

The contents of said package were five vials of insulin – my regular 90-day supply. On the surface, nothing seemed wrong. They arrived in their usual styrofoam cooler that was taped shut. After removing the tape, I saw four ice packs next to the plastic packaging containing the insulin vials; again, this was all expected.

When I picked up the plastic package and used scissors to cut it open, though, a pungent odor greeted my nose.

A medicinal, harsh, familiar scent…the smell of insulin.

Upon further investigation, I discovered that one of the five cardboard boxes encasing the vials was totally damp to the touch. Gingerly, I opened it from the bottom flap, which was sticking out slightly due to the wetness. That’s when I saw the shattered insulin vial: Somehow, the bottom part of the vial had broken, spilling and wasting all of its contents.

I wish that smell-o-vision was a thing, because OMG…the smell coming from this was STRONG.

I was shocked. In all my years of diabetes, nothing like this had ever happened to me before!

I didn’t really give my next step a second thought: Immediately, I jumped on the phone with Express Scripts, which is the mail order pharmacy that I use for my insulin and some other medications. I spoke with and explained the issue to a customer service representative, who connected me with a technician that promised a replacement vial would be mailed to me at no additional cost to make up for the broken one. I asked if they needed me to send the broken one back to them, but I was reassured that it wouldn’t be necessary because I had called them so they could document the incident.

My issue was resolved, just like that, in fewer than 15 minutes. While it was annoying to have to take time out of my day to figure that out, I’m very happy that I got a replacement quickly and easily. But really, where was quality control on this one?!

Insulin is expensive, as we all know. And to see that a perfectly good vial full of it was rendered useless due to defective packaging was a major punch to the gut, indeed.

But this reminded me of the importance of being proactive whenever I suspect something is wrong with any of my diabetes supplies…when in doubt, do something about it.

5 Things I Hate About Pod Failures

I’ve had a slew of pod failures – three in the last two weeks.

What gives? I’m not exactly sure yet, but I’m hoping to get to the bottom of it. I sent my most recent failed pod to OmniPod/Insulet for analysis, and my suspicions are telling me that I have a bad batch of pods in my arsenal.

While I wait to hear back, I decided to write a blog post listing the five things I hate the most about pod failures as a form of catharsis…

1 – How suddenly and randomly they occur. Pods don’t give an eff as to whether or not they fail at an inconvenient time. In the middle of a conference call? Fails can happen. Sleeping? Fails can happen. On a date? Fails can happen. Just sitting there minding your own damn business? Yes, still, fails can happen. The unpredictability of pod failures makes them doubly obnoxious and loathsome.

2 – That wretched, unrelenting BEEEEEEEEEEEEEEEEEEEEEEP. Crying babies, barking dogs, ambulance sirens – I’d much prefer any of those other sounds over the high-pitched scream of a failed pod. I get why it’s necessary – how else are you supposed to know that a pod is no longer functioning – but it makes my ears want to bleed. Plus, you’ve got no choice but to silence the pod by sticking a paperclip/toothpick/other equally skinny object into that teensy-weensy crevice in the corner of the device! Let’s be real here, who has a paperclip just…available like that at all times in the event of a pod failure? It’s no wonder I chose to silence my most recent screeching pod by taking a hammer to it (note to anyone else who chooses to use this method: DON’T DO IT INDOORS, go outside and smash it on the pavement or in your garage…and maybe wear something to protect your eyes, just in case).

I smashed this screaming pod with a hammer and let me tell you, it felt great to release my frustration that way!

3 – The perfectly good insulin that gets wasted. When I deal with a pod failure, I can sometimes salvage the remaining insulin left within by inserting the syringe from the brand-new replacement pod into the insulin reservoir and sucking it out (literally the opposite of adding insulin into the reservoir for a routine pod change). But it isn’t always possible to rescue the insulin due to time constraints, amount left, and so forth. So it’s extra painful to just toss the failed pod away knowing there’s insulin left inside it that I just won’t be able to use.

4 – You don’t always find out why it happened in the first place. I am a naturally inquisitive person who is always asking “why”. So when a pod fails, I want to know what went wrong. Unfortunately for me, I don’t always get an answer. OmniPod/Insulet customer service representatives might be able to tell me why based on the reference code I provide them when a pod fails – when that reference code is found in their database, the answer might be that static electricity caused it to fail, or that when the pod was performing its routine and automatic safety checks, the pod itself determined it could no longer be used. But there have been plenty of other times that my reference code didn’t signify anything, leaving me permanently clueless as to what happened to make the pod fail. SO FRUSTRATING!

5 – You have to call customer support in order to get a replacement. As someone who has customer support experience, I dread these sort of calls. It’s just a giant pain in the neck to have to go through everything about your experience with a failed pod, such as how long I was wearing it for, what brand of insulin I use, where the pod was located, the lot, sequence, and reference code numbers…the list of questions go on and on. The silver lining here is that I’ve almost always had a very positive experience when calling OmniPod/Insulet to report a pod failure. My issue is usually documented in 10 minutes or less, and I’ve never had a problem getting a replacement, which shows is indicative of superior customer service.

But…is it so much to ask for the dang thing to simply work the way it’s supposed to 100% of the time?!

Is the Livongo Blood Sugar Meter Accurate?

It occurred to me the other day that even though I wrote a couple of blog posts and even made a video about it, I still haven’t addressed one major component of my new Livongo blood sugar meter: its accuracy.

How does it stack up to my Verio meter? More importantly, do I think it’s accurate?

Well…the answer isn’t cut-and-dry because I think it can be accurate…as long as my blood sugar isn’t above 200.

How did I arrive at this conclusion?

I conducted a little experiment.

Bear in mind here, I’m no expert in experimental design, so I established a simple setup for this. During the period of approximately two weeks, whenever I checked my blood sugar, I used the same drop of blood on test strips for two different meters: my Livongo and my Verio.

And the results were interesting, to say the least.

Whenever I was about 80-180, my results from the Livongo meter and the Verio meter were within about 10 points from one another. One instance, I was 86 on the Livongo and 92 on the Verio. Another time, I was 105 on the Verio and 113 on the Livongo. The meters never reported the exact same number at any point during my experiment, but I was happy whenever they showed similar results.

Things got dicey, though, any time I entered the hyperglycemic range.

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That 163 and 165 show how at times, the two meters were in agreement with one another…but then there’s that 231 and 262. Those are just a little too different for my liking.

It was weird and I can’t explain it, but the Livongo would report that I was anywhere from 20-50 points higher than what was on my Verio at a given point in time when my levels were 200+. This really surprised me, because I’d suspected that my Verio skewed a little higher compared to most other meters, so I never thought that the Livongo would prove me wrong about that. At times, it was truly maddening: On one occasion, the Livongo said I was 251 and my Verio said I was 204. That’s the difference of at least 1-2 units of insulin for me in order to correct that high! Even more frustratingly, because I didn’t trust the result from either machine, I checked my blood sugar again immediately and the Verio said 242, while the Livongo said 228.

WTF?!

That particular example was extremely confusing because I didn’t know which piece of technology to trust. And that’s the big thing for me: I need to know that I can depend on whichever blood sugar meter I’m using to deliver accurate results.

So again, remember that I’m no good with numbers, and that this is simply an estimation…but if I had to guess how many times the Livongo agreed with the Verio, I’d say it was no more than 7 out of 10 times. And I’m super bummed about that, because I’d genuinely hoped that I could trust my Livongo meter and use it full-time whenever I was taking a break from my CGM. Given the fact that it seems to be accurate when my blood sugar is in range, though, I suppose I could use that as motivation to work harder to prevent hyperglycemic readings…but I’m not perfect and I know that they will still happen from time to time. And I deserve a piece of technology that will accurately report them to me so I can make the best possible treatment decisions.

In theory, I still like the Livongo: It has a great design and some of its features (e.g., test strip reordering) are totally unique. But in practice? It leaves a bit to be desired.

DASHed Hopes

It’s funny how much I’ve changed regarding diabetes and technology in the last decade.

I grew up not wanting to try the latest and greatest devices. I had zero interest in an insulin pump and was very set in my ways of doing multiple daily injections and finger stick pokes.

My (semi-forced) introduction to CGM technology when I was in my teens, though, changed everything for me. And I haven’t looked back since then. Actually, if anything, I’ve become more curious and excited about new technologies because they symbolize greater freedom from the heavy burden of diabetes.

So imagine how PUMPed (hehehe, diabetes humor) to hear about the redesigned OmniPod insulin management system!

This next iteration of OmniPod is known as the DASH system and it’s freaking cool. The clunky PDM has been upgraded to a sleek, touchscreen format and it’s rechargeable (no more AAA batteries). Plus, it comes with a whole host of upgrades and features that make the first generation of OmniPod look totally outdated.

Naturally, I wanted to give the DASH system a SHOT (LOL look at me, I’m on a roll with the puns).

it's not always diabetes' fault (1)
I took this image from the Insulet/OmniPod website so you guys could see how awesome the DASH system looks!

So I called Insulet and asked whether my insurance would cover the new PDM and pods, and how much everything might cost me. I learned that the major difference between how I receive pods now and how I’d receive the new DASH pods (because the DASH pods use Bluetooth, I can’t use my old radio-frequency-enabled pods with the DASH system) is that instead of getting pods directly from Insulet, I’d actually receive them through my mail-order prescription service (Express Scripts). That was fine by me – I get the pods in the mail anyway – but I wanted to know how it’d work in case a DASH pod fails on me. I was reassured by the representative that I’d still call Insulet to receive a replacement, just like I do now.

Okay, good information to know. But I really wanted to know about pricing. So I was connected with an Express Scripts representative, who informed me that the cost for a 3-month supply of DASH pods would be about $50 more than I pay now for my current pods.

I did the math. That’s around $200 more each year that I’d have to pay for my pods. That might not seem like a lot of money, but I pay right around that amount for a 3-month supply of insulin. Hypothetically, let’s say that I become financially strapped in the future, and I have to make the choice between paying for insulin or paying for my pods – when it comes down to it, obviously I’d choose insulin – but I shouldn’t have to make that choice.

So it looks like my hopes to go onto the OmniPod DASH are, well, DASHed (sorry, last bad pun, I swear) for now. I’m a little disappointed, but I’ll keep my fingers crossed that prices are lowered for DASH pods in the near future so I can take advantage of a very nicely designed, high-tech insulin pump system.