What It’s Like to Wear a Medical Device 24/7

This was originally published on Hugging the Cactus on May 7, 2018. I’m sharing it again today because for as long as I continue to wear an insulin pump and CGM, I know that this is a question that I’ll be asked. Wearing these pieces of medical technology almost all the time has certainly changed how I feel about my body and my body image, and I elaborate on that below…

A question I’m often asked is: “Can you feel your CGM or insulin pump on your body?”

The simple answer to that is: usually, no. It’s something that you just get used to. You grow accustomed to seeing a lump underneath your clothing. You adjust to putting clothes on (and taking them off) carefully to avoid accidentally ripping a site out. You acclimate to showering without being completely naked.

And, of course, you get used to the questions from strangers asking about that device stuck to you.

But the more honest answer to that question would be that there are times that I feel it more than others. For example, sometimes I forget where I’m wearing my pump until I hit it against something (I’m a major klutz who constantly runs into doorways and trip over things, almost always managing to catch my pod on whatever it is), resulting in pain at the site and a curse word or two to fly out of my mouth.

I feel it the most, though, when people stare. Whether unconsciously or purposely, people do ogle at it in very not subtle manners. Which makes me feel extremely uncomfortable. It’s worse when they don’t even ask me what it is – I’d rather have a chance to use it as a teaching moment than to have someone walk away not knowing what the device does. This tends to make swimsuit season a little less welcome for me. Nothing will stop me from donning a bathing suit at the beach or by the pool, and I do so as much as possible in the summertime. But it’s just not as fun when I’ve got to cope with lingering looks, especially when I’m an admittedly insecure person in the first place.

So it’s a more complex question to answer than you might realize. Wearing a medical device 24/7 is humbling. It keeps me alive. I’m privileged to have access to it. I’m grateful for the ways it’s improved my life. I’m always wearing it, but it’s not at the forefront of my mind – unless it chooses to make its presence known by alarming, or I’ve got people blatantly checking it out. It’s kind of like diabetes itself. It can make you feel a gamut of emotions, but no matter what, it’s always there. It’s just a part of me, and I can deal with that.

25 Years

This Christmas Eve marks 25 years since I was diagnosed with diabetes.

25 years feels like a significant milestone – and that’s because it is. Diabetes has been my “normal” for that entire length of time; I don’t remember what it’s like to live free from its burden.

I accepted that long ago, but still experience some sadness and bitterness over it from time to time. Can you blame me? There are times when I find myself envious of people with diabetes who were diagnosed later in life and have memories that remain entirely unimpacted by diabetes, but when I find myself getting swept up in morose emotions, I ground myself by remembering that (as trite as it may seem) everything happens for a reason. My diabetes story has taken very deliberate twists and turns, whether or not I was aware of them when they were happening. Each and every challenge, all the emotions, and the many experiences and relationships it has brought into my life were bound to happen, and I’m glad that they did because they’ve made me who I am today.

And today, just a few days shy of officially celebrating my quarter-century diabetes diagnosis, I find myself once again being so happy that it’s happening on a day that I will be around so many of my loved ones. I say it every year, but having my diaversary on a major holiday makes the celebration that much more special to me. The day is always more about spending time with my family than it is about diabetes. Instead of sadness, I feel joy in the reminder that diabetes can’t and won’t overshadow Christmas or any other day for that matter.

So here’s to 25 years of a life enriched and uninhibited by diabetes – and many more to come.

Is it Possible to Decentralize Diabetes?

First of all…what does that question even mean? What does it mean to decentralize diabetes?

In this context, I think of it as deprioritizing diabetes (maybe that’s the better word to use here, but let’s bear with me…let’s stick with decentralize). It’s knocking it down a few pegs rather than keeping it as a permanent fixture at the top of my to-do list.

So I guess this question should be phrased less generally – because of course it’s possible to decentralize diabetes – and more specifically target me, as an individual who is solely responsible for her diabetes care and management…

…is it possible for me to decentralize diabetes from my life?

I’m of two minds when it comes to landing on an answer. On the one hand, I can’t really imagine myself ever being successful at decentralizing diabetes. I’m always thinking about it. Every decision I make, consciously or subconsciously, is made knowing that it will have implications (in some way or another) on my diabetes. Even when I’m asleep, I can’t escape diabetes because if it’s not directly impacting my slumber by waking me up, then it’s the first thing I think of each day because I do a blood sugar check the moment my eyes are open.

On the other hand…

I’ve been using an Omnipod 5 since late August/early September and although I struggled to adapt to it until recently, it’s since come to represent what feels like a diabetes reprieve. For the first time in my life, I’m thinking of diabetes a teensy-weensy bit less, and I do think that my newfound understanding of the automated insulin delivery system is directly responsible for that. It’s been scary to relinquish control that I’ve maintained for so long over every aspect of my diabetes routine – and hand it over to a piece of technology, to boot – but it’s finally beginning to pay off. Which reiterates the question: Is it really, truly possible for me to decentralize diabetes and let myself be a person first, rather than a diabetic first?

After writing this post and musing further on the subject, I’d comfortably say…it very well could be. With some more time and heaps of patience, I do think I can get to a point where my whole world revolves a little less closely ’round my diabetes.

Finding Gratitude for Diabetes

On the surface, “gratitude” and “diabetes” don’t exactly go together like peanut butter and jelly…but for me, they are natural companions.

Every year since I’ve been a diabetes blogger, I’ve done some sort of post that explains why I’m grateful for diabetes around the Thanksgiving holiday. It’s a nice opportunity for me to take time to reflect and express appreciation for some obvious and not-so-obvious people and things.

Of course, there are a number of repeats year after year, including my family, friends, and partner; my dog, the roof over my head, the food on my plate, and so forth.

But as changes take place over time, additions are made to my list. Here are some new ones for this year:

New opportunities. Yesterday marked my final day working at a diabetes nonprofit. This Monday, I’ll begin a new job and continue my writing/editing career at a company that I’m thrilled to join. I’ve got mixed emotions about leaving diabetes behind professionally, but one thing is for certain – as a member of the diabetes community, I’m excited to continue being an active advocate and supporter of the people and programs that I’ve encountered in the last year and a half.

Access to diabetes supplies. I’ve always taken my diabetes supplies accessibility for granted. I don’t struggle to afford the medications and technologies I use (though it would certainly make my life easier if it was cheaper) and I am fortunate enough to have a solid supply on hand at all times. I know that other people with diabetes can’t say the same: an awful reality, but one that opens my eyes to something I should never take for granted.

Another thing I was grateful to do this past year? Travel to New Orleans for the ADA’s Sci Sessions and be surrounded by literally thousands of incredible people working to make a difference in the lives of people living with diabetes.

Exploring hobbies. I’ve had the wonderful chance in the last year to explore hobbies both old and new. I’ve recently picked up my knitting needles again and have made solid progress on my first sweater in a couple of years. I’ve been borrowing more books digitally from the public library so I can rekindle my love for reading. And I’ve been able to try tons of unfamiliar pastimes that I’ve grown to really embrace, such as volleyball, tabletop games, and even video gaming. It’s been a goal of mine to refamiliarize myself with the concept of down time and using it as a chance to do things that make me happy, and I’m so glad that I’ve leaned into this.

Diabetes itself. Yes, I am thankful for diabetes. Here’s why: I could spend all my time resenting it for (occasionally) making my life miserable. A long time ago, though, I chose to embrace diabetes for what it is. In turn, I’ve learned to be grateful for diabetes because of all it has brought and taught me…friendship, independence, discipline, and so much more. After all, this December 24th will mark my 25th anniversary with it – how could I not choose to find gratitude in something that’s been a part of me for nearly as long as I’ve been alive?

It seems especially significant that my departure from my role at a diabetes non-profit is just before the Thanksgiving holiday, which is a perfect time to express gratitude. So it is with zero exaggeration when I convey how grateful I am for this community, and in turn, for diabetes itself.

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.

Hugging the Cactus Turns 5!

Yesterday, October 4, 2022, marked this blog’s fifth birthday.

How wild – five whole years of writing on this blog, connecting with the diabetes community at large, and gaining invaluable insights from fellow people living with diabetes.

Proudly donning my cactus cap and diabetes devices.

It’s a humbling experience. Any time someone tells me that they’ve read my blog, I’m truly honored that they’ve taken the time to check out my little passion project. And when someone visiting this site turns into a neat opportunity, such as appearing on a podcast, I’m beyond thrilled and appreciative that I get to use other media to reach out to our community.

When I think about where I was five years ago, I marvel over how much has changed not just for me, but for the world. We’ve experienced a global pandemic. We’ve undergone times of enormous celebration, as well as those of great contention. It’s kind of an imperfect metaphor for what it’s like to live with diabetes – it’s filled with ups and downs, triumphs and tribulation – and it takes strength, determination, and resilience to get through it all.

My plan today is to quietly celebrate that, as I reflect on my blog’s birthday as well as the true privilege I have to be able to work professionally within the diabetes space. I am proud of Hugging the Cactus. I am proud of the nonprofit I work for, which has recently experienced its own rebirth into The Diabetes Link. I am proud of all the people with diabetes in my life who live courageously and healthily with diabetes.

And I’m proud of myself for my blog’s milestone, as well as my nearly 25 years of life with diabetes.

A1c and Time in Range: To Share or Not to Share?

“A1c: Also known as Hb1c or hemoglobin A1c, this is a test that is conducted every 3 months (or as requested) by an endocrinologist. A patient gets blood drawn to determine the average amount of glucose concentration in the blood during that 3 month period. The result of this test is a percentage amount, with 5% being an average result for a non-diabetic individual.”

This is the definition of A1c that I’ve shared in the diabetes dictionary section of Hugging the Cactus, and while of course the meaning and purpose of an A1c test will never change, one thing certainly has – and that’s the question of whether or not it’s the gold standard metric that indicates diabetes management.

That’s because A1c has a little competition called time in range. The concept is exactly what it sounds like: It’s an indicator of the amount of time a person with diabetes has their blood sugar within their preferred range, and it can best be captured by a percentage (e.g., I spent 70% of my day yesterday in range, with 30% of my readings either lower or higher than my ideal range).

While these two metrics vary from one another in how they are captured and analyzed, they do have one thing in common for a person with diabetes…is it a data point to share with others outside your healthcare team, or is it something to keep to yourself?

To share or not to share A1c and/or time in range…that is, indeed, the question.

Above is a screenshot from my Dexcom Clarity app. Note that you can see some of the information it captures, but you can’t see any of my personal percentages because I prefer not to share that with others.

The answer is personal and unique to every individual with diabetes, and for me, I keep it to myself in both cases. I’ve never felt comfortable opening up about my A1c or time in range online or in person. I think that’s mostly because I struggle with comparing myself to others. I do my best not to, but I can definitely turn diabetes into a competition that I internalize at all costs because I don’t want other people to know that sharing about these data points makes me deeply uncomfortable.

It’s how I am, how I’ve always been, and likely how I’ll be for quite some time. I’m curious to discover whether or not starting the Omnipod 5 will impact that at all, seeing as I have high hopes that the system will greatly increase my time spent in range as well as lower my A1c. But for now, I’m content with keeping these diabetes numbers to myself, and will aim to get better about telling people that I prefer not to discuss either.

Happy Mail

It arrived on a seemingly ordinary Wednesday, during a week in which I really needed a pleasant surprise.

I opened my front door to take my pup out to do her business when I noticed a large package on my front steps.

I wasn’t expecting anything to come in the mail, so I eagerly tore into it once my dog and I returned indoors.

And this sight was before me:

Violet is just as curious and excited about the Omnipod 5 as I am!

Yup, I’m the proud owner of an Omnipod 5 – finally!

I won’t be starting it until early next month, though. And I’ve got good reasons to delay it: 1) I’m traveling a decent part of August and I know from experience (or shall I say, my dear mom’s experience) to never try new diabetes technology when you’re out of routine, 2) I have about a month’s worth of old pods to use up before I officially switch over – I can’t imagine not using up my full supply just so I can get started on the new system faster. As I’m sure you must know by now, diabetes supplies are extremely expensive and I am diligent about using up every last pod, CGM sensor, and of course, insulin vial, before it goes into the trash.

While it’s a bit of a tease to know that automated insulin delivery is literally just feet away from me right now, it’s mostly very exciting to know that I have this to look forward to in the coming weeks. It’s nerve-wracking to go on new d-tech, yes, but the rave reviews of the Omnipod 5 have far outweighed any anxieties I have about starting the system.

And once I do, you can bet that I’ll be blogging about it!

What I Wish I’d Said to My Dia-Bullies

Growing up, I had a pretty normal (and lovely) childhood, despite my diabetes. My parents always made me feel supported and equipped with the tools I needed to advocate for myself, even at a young age. They played an instrumental role in educating my relatives, teachers, friends, and friends’ parents as to what my diabetes looked like and the ways it might make me different from the other kids – different, but never excluded from anything because it didn’t necessitate that.

Thanks to my parents’ help and the fact that they fostered self-advocacy skills for me early on, I almost never had a problem with my peers when it came to my diabetes. In fact, I’m lucky that just about all of my friends were very understanding and accommodating of my diabetes, even at young ages. It’s not often that I think about the ones that weren’t, but when I do, I can’t help but label them as my childhood “dia-bullies”.

You might be surprised to learn what I wish I’d said to my dia-bullies.

I dealt with two of those kinds of kids growing up: Once in elementary school, and again in eighth grade. In both scenarios, these dia-bullies were cruel about my condition. They often told me the things that I couldn’t and couldn’t do – whether it be participate in gym class, eat a shared classroom treat for a birthday, or maintain any semblance of a conventionally healthy lifestyle. These comments were infrequent, but when they were vocalized, they hurt…and obviously had quite the impact on me as I remember them all these years later.

Back then, I “dealt” with these comments by not responding to them in any way, shape, or form. I didn’t tell my teachers or my parents what was said and even though I knew how to talk about diabetes by then, I didn’t quite have the voice to stick up for myself and tell these dia-bullies that they were wrong.

But now? I have a voice. A powerful one, at that. So as I reflect on what was said to me when I was younger, I can’t help but wish I’d said this very simple phrase to my dia-bullies:

You’re wrong.

I wish I’d told them that there judgments were not only incorrect, but harmful. I wish I could tell them to just watch as I moved throughout elementary, middle, and high school at the same pace as everyone else, participating in the same sports, extracurriculars, and honors classes, seldom missing out on anything due to diabetes. And I wish I could’ve told them that those words would stick with me for years to come, motivating me to prove to myself and the world that diabetes does not mean living within limits.

Most interestingly of all, a small part of me does wish I could tell them…thanks, I guess, for being an unexpected source of inspiration to conquer my diabetes. Isn’t it funny, the strange places you can get encouragement from?

Listen to This is Type 1 Podcast, Episode 147!

Whoa, I feel like so much has happened since I last posted on this blog.

Usually, I plan and write blog posts about a week or two before they’re published here on Hugging the Cactus. But life last month made it pretty damn difficult for me to keep that schedule.

You see, I had covid (as I discussed here). And then…I had rebound covid. I’ll get into the details of what that looked like for me sometime in the near future, but I’m happy to say I’ve fully recovered. And thank goodness I did, because I was due to travel to New Orleans for the 82nd Annual American Diabetes Association’s Scientific Sessions conference at the beginning of June! Luckily, I was feeling better and testing negative just days before the conference, so I was still able to go and I had the most incredible time – more to come on that in another soon-to-be-written blog post.

As I write this particular post, I’m in a post-conference daze, trying to reflect on everything I learned, how it will apply to my job, and also attempting to decompress from 6 days of nonstop action, meetings, conversation, and travel.

But I’d be remiss if I neglected to mention something special I did prior to my conference and covid experiences: I was a guest on the wonderful This is Type 1 Podcast!

From episode 28 to 147, Colleen, Jessie, and I have each experienced so much personal and professional growth that we chat about in the new episode!

I’m honored to say I was hosts Colleen and Jessie’s first repeat guest. I’d recorded with them previously in January 2020, just a few short weeks before the whole world shutdown. They’d kept in touch with me and my activities via social media in the last couple of years and reached out for a follow-up interview because they’d recognized how much my career (and life, really) has changed since the onset of the pandemic.

So I’m pleased to share with my readers here the link to the recording! Please do check it out when you can – Colleen and Jessie are excellent and informed hosts who were genuinely so easy and fun to talk to. I am beyond grateful to them for asking me back on the pod and making a meaningful contribution to our diabetes community with all the information they share there!

You can listen to This is Type 1 on Stitcher, Apple Podcasts, Spotify, Google Podcasts, and generally, any other place you can find and listen to podcasts. Be sure to check out their website and follow them on Instagram @thisistype1pod, too!