A Timely NDAM Endo Appointment

Diabetes, diabetes, diabetes! That’s all I hear and think about, all day long, day in and day out…

I risk sounding like Jan Brady from The Brady Bunch with that opening line, but since November 1st, diabetes is THE only thing on my mind – thanks to NDAM 2022 kicking off, among other factors.

That’s why the timing of my latest endocrinology appointment was particularly fortuitous – until I sat down in that doctor’s office, I hadn’t quite realized just how desperately I needed help from my healthcare team. And it wasn’t until we talked through my specific concerns that I realized that I’m actually doing a lot better on the diabetes front than I had assumed…and recognition of that, plus my obvious desire to aim for even more improvement, has gone a long way in changing my attitude.

In fact, you could say that this appointment totally revitalized how I feel about my diabetes lately, and I’m thankful that it happened before I got swallowed up in the throes of burnout.

I went into the appointment hoping that I would gain clarification around my use of the Omnipod 5 system. I started using it a couple of months ago, and from day one, I remained confident that it would revolutionize my diabetes care. That’s only been half true since I started using it, as the immediate and most obvious improvement happened to my nighttime blood sugars. But my daytime levels, particularly after breakfast and lunch, continued to mystify me.

This particular diabetes appointment came in the nick of time.

As I explained all this to my nurse practitioner, she listened without judgment – the first factor that went into boosting my diabetes spirits. What she said next was the second boon, and that was that I wasn’t alone in my struggle to adjust well to the automated insulin delivery. She validated that what I was feeling was normal, and that there were adjustments we could make as a team that would hopefully result in better utilization of the technology.

The third thing she did for me was put me in touch with someone at Insulet who would be able to answer my questions about the algorithm and fill in the blanks about the components of it that weren’t clicking with me. She made this connection for me before the end of our appointment, and witnessing her do so made me feel better about having one less hoop to jump through post-appointment…and goodness knows, when it comes to the admin side of diabetes, any assistance I can get on making phone calls or sending messages is a huge help.

This single, thirty-minute appointment took a huge weight off my shoulders that I’ve been carrying around all summer and fall this year. Of course, there’s still work to be done on my part, and little things like remembering to refills prescriptions are still my responsibility alone. But I’m feeling a lot more confident in my ability to make the progress that I’ve been so eager to achieve, and that alone is massive – and even more special, having happened during NDAM.

Happy World Diabetes Day 2022!

Today is the day – World Diabetes Day (WDD), which also happens to be the birthday of Sir Frederick Banting, who co-discovered insulin along with Charles Best one hundred years ago.

Today is the day to wear blue, the official color of diabetes awareness, and use the blue circle as a symbol of unity within the global diabetes community.

I’m one of the 537 million adults living with diabetes in the world. (Statistic pulled from IDF Diabetes Atlas)

Today, and every day, I (as well as millions of others) do my best to live a life uninhibited by diabetes. It isn’t always easy, but the resilience, knowledge, and support it has unwittingly introduced to me has shaped me into a person who has diabetes, as opposed to a person who is controlled by diabetes.

Today, I celebrate my own strength as well as that of our community, and take time to reflect on this year’s theme: access to diabetes care. I acknowledge my privilege in having an abundance of that, and I am angered when I think about the millions of people around the world who lack it. As I look to tomorrow, and all the days after WDD and NDAM, I greatly look forward to and anticipate the day when medicine, technology, support, and care are all made available to the people with diabetes who need them.

I’m Proud of my Diabetes Story

“Pride” isn’t exactly the first word that comes to mind when I think of my diabetes. In fact, a whole slew of other nouns and verbs top my list of words that I associate with diabetes, including but not limited to: strength, resilience, acceptance, guilt, anger, worry, identity…

But I’m not writing this post to focus on those other words – pride is the one I want to talk about here, and I want to explain why I’m proud of my diabetes story.

You can’t tell that the little girl (me about 23 or 24 years ago) in this picture has type 1 diabetes. The only clue, perhaps, is the Diet Coke can you can just barely see.

Diabetes has always been part of my life; actually, from the moment I was born. This is because I have family members who live with type 1 diabetes, just like me. I don’t really remember what life was like before my own diagnosis, and I’m grateful for that because I never felt like it made a dramatic disruption (well, besides for making its presence known within my body on Christmas Eve, but I was four years old at the time and the holidays were definitely never soiled for me because of diabetes).

As I reflect on what it was like to grow up with diabetes, I also find myself appreciative of the fact that I’m hard-pressed to find any actual evidence of it besides doctors’ records. I’ve flipped through my parents’ photo albums countless times over the years and there’s not one photograph of me laying in a hospital bed, injecting myself with insulin, or showing any signs of diabetes except for maybe the stray Diet Coke can or blood sugar meter in the background of a picture. That’s just further proof that my diabetes was never the focus, it was more so about me living and experiencing a totally normal, loving childhood.

All that makes my sudden entrée into the diabetes community, beginning in my young adulthood, that much more surprising. The transition from living under my parents’ roof to suddenly being on my own in college was, in a word, jarring – so peer support was crucial for me in order to navigate this change successfully. It didn’t happen overnight, I had heaps of help along the way, and it was far from easy, but in my mind I’ve done a good job of handling my diabetes and all the responsibilities that come with adulthood in the last decade.

And that’s what I’m proud of. I’m proud of myself for getting to this part in my journey, the part where I feel well-equipped to live a life uninhibited by my diabetes. I’m proud that I’m able to talk about my diabetes experience with a sense of confidence and capability. I’m proud that I’ve learned how to advocate for myself in various settings, whether it’s with my healthcare team or in the workplace. And I’m definitely proud of myself for the way I talk about my diabetes story: It contains chapters that are unfiltered and authentic to me, and I think that they illustrate how I came to accept my diabetes long ago and use it as a source of courage in my daily life.

I hope that other people with diabetes can also find a similar sense of pride in their own experiences with this chronic condition.

Overly Aware

Well, we’re (somehow) officially one week into National Diabetes Awareness Month (NDAM) 2022 and I’ve got to say…I’m feeling particularly aware this year.

Aware of the sheer scope of people affected by diabetes.

Aware about the amount of work that still needs to be done to defeat diabetes stigma.

Acutely aware that insulin and other necessary diabetes medications and supplies are too expensive and need to be more affordable/accessible to all.

Aware of how all the work (including but not limited to advocacy, peer support, and individual management of the condition itself) is done 24/7, 365 – not just during the span of one month.

You could say this makes me overly aware of the weight and significance of NDAM; and while this is certainly true, it’s also totally accurate that NDAM – and life with diabetes itself – is a marathon, not a sprint.

NDAM/life with diabetes is a marathon that requires proper pacing.

Thank you to a tweet by Mike Durbin that I saw on the first of the month for reminding me of this.

I agree with Mike’s advice to pace myself throughout NDAM, to get involved as I see fit, and to take a break if and when I need it. To an outsider, these words of wisdom may seem obvious, but to someone like me who lives with diabetes, works in diabetes, and immerses herself in the diabetes community, they ring particularly loudly and clearly during this chaotic period that has no shortage of spirit, heart, and good intentions.

So for the next 21 days, I’m excited about plugging away on my marathon’s path, and happy to take breaks here and there for myself so I can cheer on and support everyone else who’s on this journey with me.

I Don’t Have Time to Wait for Diabetes!

“Your estimated wait time is less than 3 hours and 58 minutes.”

The dulcet female voice reported, before the recording transitioned to obnoxious elevator music.

A four-hour wait time? Surely, that couldn’t be true. I decided to stick on the phone for a little while longer in the hopes that a customer support representative would pick up in the next few minutes as opposed to the next few hours.

The elevator music faded and that same female voice said: “Your estimated wait time is less than 4 hours and 16 minutes.”

What the heck?! How did my wait time increase? I pulled my phone away from my ear and looked at it in utter disgust, before deciding I’d hang up because I simply didn’t have the patience to wait any longer – whether or not that meant 4 more minutes or 4 more hours.

Diabetes doesn’t care that I don’t have time to wait for anything that has to do with it.

This is just one example of the many phone calls I have to make in order to get doctors appointments scheduled, supplies reordered, and issues troubleshooted…and some days, I’ve got more resolve to wait than others. This just so happened to be a day where waiting felt unfathomable to me, but like it or not, diabetes doesn’t wait. It’s far more impatient and needy than I am. And this is a side of diabetes that I’m not sure other people really understand – the sheer amount of time it requires to be managed. It doesn’t care that I’d rather spend that time doing literally almost anything else (even cleaning the bathrooms sounds more enjoyable than waiting for 4 hours on the phone). Nope. I don’t have time to not have time when it comes to diabetes, which can be a frustrating truth to tolerate at times.

Reflecting on National Diabetes Awareness Month 2021

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.

My Take on Diabetes and Support

I wrote a version of this post on November 20, 2019. I wanted to revise it and share it today because, as we approach a week in which we recognize gratitude for our loved ones, I want to express how grateful I am for the people in my life right now who support me throughout the highs, lows, and everything in between that comes with life with diabetes.

Emotional support is a lovely thing. It feels good to have people in your life who you feel have your back. And it’s twice as nice to have when you’re dealing with a chronic illness like diabetes.

I talk extensively about diabetes and support in the most recent episode of the podcast, Ask Me About My Type 1. (Here’s the link in case you haven’t listened to it yet.) Rather than rehash everything I said in that episode, I’m going to use this post as an opportunity to reflect how my wants and needs in terms of support for my diabetes have changed over the years.

It’s interesting (at least, it is to me) to think about how and why my desire for support has changed as I’ve grown older. My childhood was very normal despite diabetes. It was always there and it was always a thing I had to deal with, but I definitely didn’t feel compelled to talk about it as much as I do now, let alone lean on others in difficult times. Why is that?

I think it has a lot to do with getting to know myself better as I’ve aged.

In this post, I get all self-reflective-y on diabetes and support.

After all, they say that with age comes wisdom. And though I don’t exactly consider myself a wise old sage or anything of the sort, I do think that I’ve acquired some enlightenment about myself and the way that I process things in my adulthood.

Specifically, I realized in the last few years that diabetes has instilled in me a strong desire to feel in control of every aspect of my life…not just diabetes. When something doesn’t go according to whatever carefully thought-out plan I’ve cooked up, I get upset. And I tend to either bottle up my dismay, which is never a good thing to do, or I totally take it out on the whichever poor soul happens to be within my vicinity, which isn’t fair. Neither of those reactions is a healthy method of dealing with things, but at least I’m aware of that and I’m actively trying to improve how I cope.

I think that this example shows how important diabetes support has become to me because I’m able to lean on others in those times that all of my diabetes plans don’t work out the way I envisioned them. I’ve figured out, over time, that it’s just about the only thing that really works for me. Talking to other people with diabetes (and without diabetes) about struggles that I’ve faced makes me feel less alone. It used to be scary for me to be so vulnerable with others, but I’ve found that it’s worth it because it helps me heal, move on, and forgive/accept myself for feeling whatever I’m feeling.

And now, two years after I wrote this original post and two years of life experience later, I’ve finally fostered my perfect support network from the different people and relationships in my life. I’ve got the lifelong support of my family members, the years of support that my friend groups have provided to me, support from coworkers who work with me in the diabetes space (bringing a whole new meaning to people who really and truly “get it”), and the support in my romantic relationship that I’ve been missing my entire adult life. It feels incredible to have a partner who always asks questions and demonstrates a willingness to learn about my diabetes, adds new perspective and helps me identify solutions when I’m being challenged by my diabetes, and shows up for me when I really need him to. That, and the support I get from the other groups I’ve mentioned, is truly powerful…and when it’s combined with learning how to rely on others and best support myself, support becomes magical and absolutely enhances the quality of my life with diabetes.

What I Wish People Knew About Life with Diabetes

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.

3 Nighttime Lows in a Row

The night of the first low, I was “good” and treated with glucose tablets.

The night of the second low, I shamelessly treated with a leftover Halloween candy blondie (okay, two of them) that I had made earlier that day.

The night of the third low, I was exhausted. And feeling nothing other than a desire to sleep, I treated with both glucose tablets AND sour patch kids, because my body decided it needed that many carbs in order for my blood sugar to level out for the rest of the night.

By that third night, I was so dang tired. I’d had to go downstairs to get the sour patch kids, and by the time I was done eating them, I couldn’t fathom walking all the way back up the stairs to get into my big, comfy bed. So I just crumbled onto the couch, pulling a blanket over me, and snoozed there for a bit. I probably could’ve curled up into a ball on my carpet and slept just as soundly, even if only for awhile, because I was so spent from being woken up in the middle of the night for the third evening in a row to treat a low blood sugar.

I wish that people knew that diabetes is truly a 24/7/365 condition.

I hate having my sleep – which seems harder and harder for me to get enough of as I get older – interrupted by something as stupid as a low blood sugar.

I hate having to eat in the middle of the night and ruining the minty taste leftover from my brushed teeth prior to bedtime.

I hate that sometimes, the low is bad enough that I get woken up one or two or even three more times in the same night because I’ve got no choice but to consume more carbs.

It seems fitting to write about this – how disruptive my diabetes has been to my sleep over the course of three nights, let alone my entire life with diabetes – during National Diabetes Awareness Month. Because I don’t think the rest of the world really understands that diabetes truly does not have an “off” switch. People who live with diabetes don’t have the luxury of sleeping peacefully without having a single worry about diabetes: It can and will disturb the soundest of sleeps, and it’s frustrating, inconvenient, and annoying every time it does.

Happy National Diabetes Awareness Month!

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!