Full Disclosure: I Have Diabetes

“Full disclosure: I have diabetes, so I have to be extra careful and wear a mask and gloves.”

“Full disclosure: I have diabetes and it can be tricky for me to handle it when I’m drinking alcohol.”

“Full disclosure: I have diabetes but I love baking treats using regular sugar instead of sugar substitute.

“Full disclosure” – what is it about this phrase that has made me utilize it several times when meeting new people in the last couple of months?

The term itself means to reveal the complete, factual truth to an individual or individuals regarding a particular matter. But why have I associated it with my diabetes? Why has it become a conversation crutch for me in which I rely on it to introduce my diabetes?

Pink and Peach Freeform Art Instagram Post
Hey, Cactus Huggers…did you know that I have…DIABETES?!

I guess that’s because I’m trying to let the person or people that I’m talking with know that my diabetes is something that I feel I have to reveal to them in my own time. I want others to know that a lot of the time, my diabetes makes my decisions for me, particularly in cases that my blood sugar might be directly affected because I did or did not do something.

I also depend on the phrase as a bit of a segue – it transitions the topic of conversation to diabetes for at least a couple of minutes as I answer any questions that someone might have for me about it. It’s casual enough to reassure the other person that it’s no big deal, but it’s also a contextual clue that I’m about to disclose an important tidbit of information about myself.

I’ve always been interested in the language of diabetes – the words and terminology that are innately part of this chronic condition – and I’m well aware of the power of using certain words over others (e.g., I try to use “person with diabetes” instead of “diabetic” because it’s important to separate an individual from the condition). So I’m adding “full disclosure” to my personal diabetes dictionary because of my realization that it’s become a mechanism for me in conversation that I can use to smoothly introduce my diabetes.

I’m a word nerd for a reason, cactus huggers.

4 Reasons Why I Started a Diabetes Blog

At the end of June, I was notified that someone nominated me for the 9th Annual WEGO Health Awards!

This is my second time being nominated for the “best in blog” category. And words can’t describe how much it means to me – in the two and a half years since I started Hugging the Cactus, I’ve questioned countless times (truly, at least once a week) whether it’s worth all the effort it takes me to run this blog. Knowing that there’s at least one person out there who sees value in what I have to say is simultaneously humbling and motivating and makes me want to continue writing this blog for years to come.

Of course, I certainly didn’t start this blog to receive nominations or awards! While the recognition is incredibly lovely, there are actually a few different reasons why I started a diabetes blog…

Pink and Orange Abstract Quote Instagram Post
I wish I had a cute little blogger’s corner like this, but in reality, my current desk is actually a dining room table. Maybe one day…
  1. To express my diabetes story in a creative format that works for me. Some people are gifted photographers and can curate amazing Instagram feeds through which they share their diabetes stories. Others might be video wizards and choose YouTube as their diabetes-storytelling platform. But me? I choose writing a blog because, well, I’m a writer. I’ve always loved words – reading, writing, and speaking them, so this is what makes sense for me.
  2. As a form of therapy. Diabetes evokes a lot of intense thoughts and feelings. It can be hard to voice every single one of them to a family member or a friend. So that’s what I use this blog for: an outlet through which I can sort through my more complicated diabetes emotions by writing about the experiences that create them. And let’s be real, it can feel amazing to just vent and let it all out in a blog post.
  3. To connect with other members of the diabetes online community (DOC). This is probably the best-known reason why I started this blog – social media is great, but sometimes it can be highly impersonal. On some platforms, we’re showing the filtered versions of our lives and perhaps choosing to only hit the highlights instead of including the lows along with them. I feel like on this blog, I can write about the good, bad, and the ugly, and all of it has the potential to resonate with different audience segments. To me, that’s really powerful and it’s resulted in some of my stronger DOC friendships.
  4. To be an advocate. I’ve always wanted to be a diabetes advocate, but I was never really sure how I could be an effective one. I know that advocacy comes in many forms, and I knew that the best type for me would be one that involved my writing. So sharing my diabetes experiences on my blog is one way that I’m an advocate, but I’ve amped up my efforts recently by becoming a digital advocate for T1International. Blending my blog with their resources has only enhanced my ability to advocate for diabetes and educate others in addition to myself (because even after 22 years of diabetes, I still learn new things about it all the time), so I’m really grateful for my partnership with their organization.

When I’m dealing with blogger burnout, I think it’ll help me to look back on this little list to remind myself of my “why”. These are the reasons why I started and continue upkeep of Hugging the Cactus. And you’re a reason why. For that, I thank you.

 

Doctors Who Just “Get It”

Doctors who just “get” diabetes are the best.

And I’m not exclusively talking about endocrinologists here, because really, they’re the ones who specialize in diabetes…so, you know, they are supposed to just get it.

I’m talking about the other medical professionals that people with diabetes might see in addition to their endocrinologist.

Take me, for example…I see a primary care physician, a dentist, an allergist, an OB/GYN, and an ophthalmologist.

And only a couple of those specialists really understand what it means to have a T1D patient in their care.

Doctors Who Just _Get It_
It’s really nice when my doctors don’t question my authority on my own diabetes.

For example, I saw my allergist back in February (before all this COVID stuff) to see if she could switch me to a nasal spray that cost less than the $45 per month I was paying (because let’s be real, if I can save money on a prescription, I’m going to do it). The appointment was supposed to be quick and easy, but it turned into a two-hour affair (!) because she was concerned about my asthma.

I highlighted my issues with asthma in a post from January. The big takeaway from my most recent spells of wheeziness is that the inhaled steroid I was taking to deal with it at the time was making my blood sugar skyrocket, and I felt like I had to choose between breathing comfortably and maintaining healthy blood sugar levels…not an ideal this-or-that scenario by any standards.

So when my allergist detected some “squeakiness” (her words, not mine, and it makes me laugh because that’s a cute way to refer to the rasping gasping of asthma) in my lungs when she was listening to my breathing with a stethoscope, she asked me to catch her up on my history with asthma. When I did, she immediately understood my reluctance about taking the inhaled steroid, and prescribed me a new medication that will reduce my asthma symptoms as well as some of my allergy symptoms.

I’m never going to be thrilled, per se, about adding yet another medication into the mix: It’s just one more thing that I have to remember to do each day at a certain time. But what did excite me about this prescription is that I’ve noticed a real difference since I’ve started taking it. And more importantly, I felt heard by my allergist. She didn’t write off my concerns about the inhaled steroid, she took extra time during the appointment to run tests, and we had a back-and-forth dialogue in order to get to the bottom of things.

It was a stark contrast to the appointment I’d had with a nurse practitioner from my PCP’s office in which I was prescribed the inhaled steroid DESPITE having voiced my concerns, and the appointment was over within minutes.

It’s a bummer that not all medical professionals “get” diabetes, but it’s also a reminder that as patients, we can make a difference by continuing to advocate for ourselves until they do understand.

My First Endo Appointment of 2020

My first endocrinologist appointment of the year is coming up next week and it’s got me feeling allllllll sorts of emotions…

Anxiety. This tops the list because, well, I haven’t been to a medical office since the coronavirus outbreak started. My doctors have either asked me to reschedule my appointments, or I’ve been able to see them virtually. I know that my endocrinologist’s practice has many protocols in place now to make the experience as sanitary and safe as possible, but it still does put me on edge.

Fear. I’m afraid of what my A1c will be. Yup, I’m actually scared to know this reading that should, in reality, help me manage my diabetes better. I know, I know – the A1c is just one way to measure how well I’m taking care of my diabetes, the one number isn’t a total reflection of my “success”. But I can’t help but be worried that I’ll be disappointed by my results, even though I know I’ve tried my best in the last few months to achieve one that makes me happy.

Beige and Gray Minimalist Quote Instagram Post
Who would’ve thought that a simple follow-up with my endocrinologist would evoke so many emotions?

Skepticism. The last time I saw my endocrinologist was just a couple days after Christmas…and it was my first meeting with her. It was her suggestion that I return in six months as opposed to the usual three, which I thought was a little weird, but I just went with it. However, I’m now wondering if this was the right call, because how on earth is she even going to remember more than six months later? I’m concerned that we’ll spend most of our time catching up on things that I didn’t want to discuss during this important follow-up, but I’m cautiously optimistic that it will go better than I’m currently expecting it to go.

Curiosity. I’m HELLA curious as to what my doctor will say about my diabetes management in the last six months. Will she tell me that I’m doing a good job? Will she scold me? Will she take the time to review my latest lab results? Will she help to address my needs so that the next time I see her, I’ll have less trepidation over our visit? I’m very eager to find out the answers to those questions.

Listlessness. Perhaps the most unusual feeling I’ve had about this appointment is…lack of interest in it. I’m nervous about physically getting out of the house to go to it, and I’m wondering about the outcome of it, but the mere thought of going right now just isn’t sparking much of anything within me. I haven’t really thought about the questions I might ask her during the appointment; instead, the only thing I’m truly focused on is the logistics of getting there and actually sitting in the appointment. Otherwise, I’m just feeling a little tired when I think about it, like I’ve already gone and it’s drained me of my energy. This could be due to some burnout that I suspect I’m contending with at the moment, but for now, all I know is that unless I leave the appointment feeling positive in some fashion, then this whole “six month follow-up” thing just might not cut it for me and my own diabetes care and management routine.

Four Signs of Diabetes in the Summertime

Sun’s out, guns pumps out, amirite guys?

The summertime season is in full swing, and now that it’s here I’m thinking of the various ways my diabetes is more pronounced in the warmer weather. It’s much more visible, leading to many more questions, but what are the cues that give it away to others? I thought of four…

Visible sites. Shorts-and-t-shirts weather makes it much harder to place pods or CGM sensors in discrete locations. And if I’m going to the beach? There’s no way that I can even attempt to hide my devices. That’s probably why I make them even more obvious with…

…Pump and sensor art. I’ve written about Pump Peelz and GrifGrips in the past – they make adhesives and skins that are specially designed to fit pods, PDMs, pumps, meters, and more. The products they make are truly little works of art for diabetes devices, and I like to make sure all of mine are decked out in the summer months so I can show off tech that’s not only functional, but also stylish.

Four Signs of Diabetes in the Summertime
I’m looking forward to donning my best beach-y Pump Peelz on what I hope will be many trips to the beach this summer.

Gadget tan lines. Or if you’re like me, it’s more like sunburn lines. That’s because each summer, without fail, I somehow manage to neglect the space around my pod or my sensor, so when it’s time to remove it, there’s a huge red circle around the perimeter of where the device was situated. Maybe this year I’ll actually learn my lesson and take the time to apply sunscreen properly so I can avoid the very not-cute sunburn circles.

Travel coolers. This is probably the least obvious sign of diabetes in the summertime, but to those in the know, coolers meant to protect insulin are pretty recognizable compared to regular coolers. Whether it’s a Frio cooling pouch or another brand of insulin cooler, people with diabetes tend to carry these throughout the summer months in order to prevent insulin from spoiling due to heat exposure.

 

Conference Calls and Low BGs

Some things in this world simply belong together.

Peanut butter and jelly. Batman and Robin. Mickey and Minnie. Name an iconic pair, and…

…I can guarantee that it won’t be conference calls and low blood sugars.

Indeed, I can attest to how much the two DON’T belong together because I faced a rather annoying one the other day.

It happened during one of the many weekly meetings that I now attend virtually along with the rest of my department at work. Not only do I have to dial into these meetings, but there is a video component, as well. Fortunately for me, all that I’m doing is listening during these meetings instead of talking, so I can stay on mute for the duration of most of them, and occasionally make various facial expressions that show I’m listening.

So I was, indeed, on mute when the shrill BEEEEEEEEEEEEP BEEPBEEPBEEPBEEP of my CGM receiver started. And thank goodness I was, because that sound is enough to derail anyone’s line of thought.

But rather than address the low right away, I was a little stupid about it.

rld
I turned off my webcam for approximately 30 seconds just so I could capture how agonizing the wait for my blood sugar to come back up was.

I decided to wait as long as possible before I corrected it.

I know, I know – that’s a dangerous game to play. But hear me out! My meeting was running from 12:30 to 1:30. I planned on having lunch right after the meeting, and it was already 1 o’clock when my CGM started shrieking. I thought I could wait to treat it with my lunch food…but that’s not what ended up happening.

I started feeling low, low. Like, shaky, sweaty, unable to focus on anything that my group was discussing, and ravenously hungry.

So I did what any person with diabetes would do when their blood sugar is that low – the only thing to be done, of course, was to whip off my head phones, turn off my camera, sprint into the kitchen, wolf down a handful of raisins, and jump back onto the call.

Oh, and turn off the camera again for another 30 seconds or so (in the 15 minute window of time it took for my blood sugar to stabilize) to capture a picture of myself on the struggle bus that is the recovery process from a low.

The whole ordeal stood out to me because it’s very different from the last low that I remember experiencing during a work meeting. That one happened when we were all still in the office, and I had to get up and dismiss myself from the conference room so I could grab a package of fruit snacks from the office kitchen.

That one was much more disruptive, but I handled it much more promptly than this one.

This one wasn’t even noticed by a single person on the conference call (and if someone did see me pop off camera for a moment, I’m sure they just assumed I was having connectivity issues).

This one I didn’t react to immediately, and I ended up being punished for it because I missed out on some meeting information due to my inability to concentrate and the need to finally treat it.

This one and that one do have one thing in common, though: Low blood sugars absolutely do not complement meetings, conference calls, or any sort of work-related task, ever.

Why Does Everything Have to Be so Complicated? (Musings on Diabetes and Emotions)

I hope that the moment you read the title of this blog post, Avril Lavigne’s smash hit from 2002 got stuck in your head (sorry, not sorry).

On a related note, it felt like it was the right phrase to use as a title for this post.

In the past, I’ve written how diabetes has turned me into a bit of a control freak (meaning that I don’t do well with the curve balls it sometimes launches into my path). I prefer a schedule – nothing too regimented, just enough to know what to expect in terms of diabetes issues in a day. And that’s not always possible; hence, I have some control-freak tendencies.

Lately, I’m also wondering if diabetes has made me more emotional.

The thought occurred to me when I was deep in self-reflection mode, a place I’ve found myself going to again and again throughout my quarantine. I started thinking about instances in which I let my blood sugar influence my mood, and I realized that it happens more often than I care to admit.

White and Blue Emojis Animated Social Media Graphic
Life with diabetes sometimes means reacting like all of these emojis within a matter of moments.

I wonder if the tie between my emotions and my diabetes exists because my diabetes requires me to be so attentive to my body at all times that it’s also caused me to have a heightened awareness of my emotions and what may be causing them. I definitely allow blood sugars, both high and low, to affect how I feel when they happen. I let the successes and failures of diabetes technology influence my mood. And when I start to get down in the dumps about non-diabetes things, it often turns into full-blown diabetes burnout.

Diabetes is complicated on its own.

But to think that it interferes with my emotions, too?

Isn’t it enough for diabetes to impact me just physically and leave my mental state out of it?

 

Have You Signed the Type 1 Diabetes Access Charter?

On Wednesday afternoon, I signed a charter intended to bolster worldwide diabetes advocacy. The charter was launched by T1International and I’m sharing it here with you to encourage you to sign it, too. Here’s some more information on it, pulled directly from the T1International website:

Around the globe today, people with type 1 diabetes are dying because they cannot afford or get ahold of insulin, supplies, education and treatment.

To survive and live a full life, everyone with type 1 diabetes has the right to the following:

1. The right to insulin
Everyone should have enough affordable insulin and syringes.

2. The right to manage your blood sugar
Everyone should be able to test their blood sugar levels regularly.

3. The right to diabetes education
Everyone should be able to understand their condition, including adjusting insulin dosages and diet.

4. The right to healthcare
Everyone should have hospital care in the case of emergencies and ongoing specialist care from a professional who understands type 1 diabetes.

5. The right to live a life free from discrimination
No one should be subject to any form of discrimination or prejudice because they have type 1 diabetes.

In addition to magnifying diabetes advocacy efforts globally, the charter is also used to influence the actions of governments and organizations so that policies can be changed and the rights of people with type 1 diabetes can be prioritized.

It took me fewer than 30 seconds to sign the charter, and I put this blog post together in under 10 minutes. Join me by signing and spreading the word about it to help people living with type 1 diabetes have access to vital insulin, supplies, healthcare, education, and freedom that are necessary in order to survive and live full lives.

Haste Makes Waste (of Pods)

Have you ever been in such a hurry to do something within a certain period of time that it works to your disadvantage?

I guess there’s a reason why they say haste makes waste…

…especially when haste results in accidentally whacking your insulin pump off your arm.

I was reminded that this can happen the other day when I had my friend over for some socially distant hang time. Just because we had to stay six feet apart during her whole visit didn’t mean that I had to be a bad host, though, and I was in a rush to bring some Goldfish for us to snack on while we sat in the sun outside. I flitted about the kitchen, grabbing the bag, a plate, and some napkins to bring out with me. When I went to open the sliding door that would take me from the kitchen to the porch, I gave myself just enough room for my body to slip through it sideways.

I should’ve walked through the opening slowly; rather, I dashed through it like I was about to cross the finishing line of a race – and my pod was suddenly, a bit violently, ripped off my arm in the process.

“ArrrrrRRRRRRRggggHHHH!” (I think that’s a pretty good approximation of the sound that I made when it happened.)

Green Yellow Paint Strokes Birthday Instagram Post
I wish I had a picture of how absurd it looked to have my pod dangling from my arm; alas, taking photos wasn’t a priority of mine in this situation.

My friend, alarmed by my animalistic emanation, asked if I was okay. I came to my senses and calmly explained that I’d just knocked my pod off my arm, and she looked on in horror as she saw it dangling by an adhesive’s thread on the site.

“Doesn’t that hurt?!” she asked in dismay.

I reassured her that no, while the actual sensation of the pod ripping off my skin didn’t hurt, it definitely stung that I was now forced to replace it even though it had only been in use for less than a full day. It sucks when I can’t use my supplies to their fullest extent because each time something like this happens, there’s a dollar amount attached to what I’m wasting, and what’s worse is that I can’t blame it on anyone or anything except myself.

Ah, well…a fresh pod was applied and no harm was done in the end. But next time I try to enter or exit that sliding door, you can bet I’ll be a lot more careful when I do so.

8 Things About Diabetes That Make Me Want to Rip My Hair Out

Life with diabetes can be the opposite of a cakewalk. In fact, it can be so frustrating at times that I seriously consider ripping my hair out due to sheer agitation.

When thinking about the things that drive me nuts about diabetes, I came up with a list of 8 occasions in which I come this CLOSE to losing my freakin’ marbles:

1. When low blood sugars refuse to come up…

2. …And when high blood sugars refuse to come back down.

I’m considering these first two as separate list items because the scariness of a lingering low and the frustrating nature of a stubborn high can be two very different types of “GAAAAAAAAHHHH!” But both can be especially suck-y when you feel and know that you’ve been doing everything right to treat them without experiencing the expected results.

3. Pod and CGM sensor failures.

Oooh, any sort of device failure can be so exasperating any time of day. But they’re worse when they happen at inconvenient times, such as in the middle of the night or during an important conference call. All diabetes technology should work flawlessly at all times, but that’s not always the reality that we live in.

4. Inaccurate results.

I can’t stand when my blood sugar meter or my CGM report false readings. Sometimes, I’ll check my blood sugar two times in a row just to see how close both readings are to one another, and it makes me want to throw my meter across the room when I see that they’re off by 20+ points. Once, I had a reading that was off by more than 50 points! That makes a major difference in how much insulin I give myself in that moment in time, so inaccurate results can really derail my blood sugars for hours after.

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I’m sure you can imagine how entertaining the search results were when I looked up images to go with this blog post.

5. Folds in the adhesive.

Whenever I apply a fresh sensor or a pod, I try to be super careful and make sure that the adhesive sticks smoothly…but despite my best efforts, that doesn’t always happen. Folds in the adhesive are far from the worst thing in the world, but they do make it more difficult for my devices to stick on for the full length of time that I need to wear them, and I usually end up having to add tape around them to reinforce the hold. More tape = more folds = more irritation!!!

6. Unexplained blood sugars.

Anyone with diabetes has been there, done that. You could follow the exact same routine from one day to the next, even eating the same foods at the same times, and get totally different blood sugar results. Or maybe you thought that you bolused perfectly for a meal, only to find out hours later that you’re much higher or lower than you anticipated. Whatever the reason behind them may be, unexplained blood sugars are just obnoxious.

7. Screeching alarms.

Speaking of things that are obnoxious, let’s talk about wailing OmniPod or Dexcom alarms for a hot second. There’s nothing like a resounding BEEEEEEEEEEEEEEEEEEEP to ruin your day!

8. The INSANE costs of our supplies.

Undoubtedly, the thing that most makes me want to rip my hair out when it comes to diabetes is the cost of supplies. I’ve blogged more and more recently about the criminal cost of insulin – since the 1990s, the cost of insulin has increased over 1,200% (!!!) – and I’ll continue to do so until EVERYONE with diabetes can afford this life-saving medication. We never asked for diabetes to happen to us. But it did. And the fact that many people with diabetes have to make sacrifices in order to, well, survive, is simply not okay, and the most infuriating thing about living with this chronic illness.