This blog post was originally published by Hugging the Cactus on September 12, 2018. I’m reposting it today because it is still incredibly important and relevant: We ALL must work together and treat one another with respect. Life with diabetes is hard enough on its own! Diabetes online community, I love and value you so much…please just remember to be kind to others. Continue reading for my thoughts on why I think it’s fruitless to debate one another regarding diabetes…
I found the diabetes online community (DOC) a few years ago – or perhaps it found me – and to this day, I’m incredibly grateful for it. It’s introduced me to new friends and it’s always been a reliable source of information. Whether I’m lamenting a low blood sugar at 2 A.M. or asking if anyone has advice on a pod problem at 2 P.M., odds are I’ll have someone reaching out to me within minutes in some form or fashion. That kind of on-the-fly support is invaluable.
That being said…the DOC is not always a perfect safe haven.
It isn’t productive to argue over who is “right” and “wrong” when it comes to diabetes care and management because it’s highly individualized.
In fact, if there was one thing I could change about it, it would be to make it a judgment-free space: because all too often, people are unfairly judged for how they choose to manage their own diabetes.
I’m not saying that people aren’t entitled to opinions. Of course they are! But what happened to respectfully disagreeing with people?
I’ve seen situations like the following across different social media platforms:
People getting attacked for following low/medium/high-carb diets
People getting criticized for sharing “good” and “bad” blood sugars/A1cs
People getting judged for dealing with diabetes burnout – as well as people getting judged for sharing their diabetes triumphs
People getting discouraged from posting only the pretty parts of diabetes
We can’t keep doing this to each other. Just because a certain diet or T1D management strategy works out well for one person, doesn’t mean that it will work the same for another. That’s because diabetes is not a one-size-fits-all condition.
And we shouldn’t be judging one another for our differences. In fact, our differences can teach us so much more than our similarities can. We should celebrate one another for living with diabetes: doing the best we can, day after day, whether it yields “ideal” or “not ideal” results. Because it’s damn difficult to manage, and anyone who says otherwise is being judgmental.
We can learn and grow from one another, which is pretty powerful, as long as we refrain from this “I’m right, you’re wrong” attitude.
I can’t be the only one who feels that it takes five-ever (which is even longer than FORever) for high blood sugar to come back down to normal levels.
I don’t use any super-fast-acting insulin (such as Afrezza or Fiasp), so typically, I have to wait about an hour for my good ole Humalog to kick in. And an hour can feel agonizingly long when it comes to diabetes.
Fortunately, I’ve used different tips and tricks over the years to help make that hour fly by:
Blast some music and dance around in place. You might feel dorky when doing this, but I honestly swear by it – not only is it fun, but it can also help my blood sugar come down faster because yes, dancing around is still exercise!
Sip water over the course of the hour. I challenge myself to drink at least one full water bottle (I’m talking my 25 ounce reusable water bottle, here) in this hour of time. It’s my opportunity to rehydrate myself, and it’s also a good way to flush out the system when trying to bring a high blood sugar back down.
Watch episodes of “comfort” television. I know that I can watch exactly one episode of The Boys, two episodes of Sex and the City, or three episodes of Community (yes my taste in TV is eclectic) and allow myself to get totally immersed in the shows as opposed to stressing about my blood sugar. I call these shows “comfort” TV because I’ve seen all the episodes before, but I enjoy them still and I know how much of them I need to watch in order to stay distracted.
Read a magazine or a few book chapters. I’m kind of a hoarder and I save old magazines that I’ve purchased at airports over the years…but my magazine stash comes in handy when I need an hour of time to go by faster because I can pretty much read one cover to cover (depending on how big it is, of course) while I wait for my blood sugar to come down. Or I can turn to my book collection, select a piece of “comfort” literature (like the comfort TV described above), and get lost in the words for awhile.
I could stare at a clock and/or my CGM when my blood sugar is high and wait *patiently* for it to come back down…or I could make time go by a lot faster by keeping myself occupied.
Get into an arts and crafts project (or anything that requires focus). For me, this is knitting. Depending on the knitting project, it can take anywhere from a day to weeks to complete something. So if I need to wait for a high to come back down, I can focus on making knitting progress as opposed to what my blood sugar’s doing for an hour – and honestly, I sometimes get so into my work that I don’t stop for a few hours. Time goes by quickly when knitting!
Make it impossible to keep checking the CGM app. Sure, I could torture myself by checking my app literally every 5 minutes for updates, but that’s one guaranteed way to drive myself crazy for a full hour (or longer, because there’s a 15-minute delay with my CGM). So I force myself not to check it by putting my phone in a different room, silencing it, or turning it off altogether. Removing the temptation to check my blood sugar is majorly helpful when waiting for it to drop down because I’m not constantly stressing over how long it’s taking for the insulin to start working.
It might seem kind of ridiculous that I rely on these strategies to make time go by faster when I have a high blood sugar, but they work – and feel a heck of a lot better to do than anxiously staring at my CGM for a full hour!
One of my Instagram followers recently reached out to me and asked for some advice.
…can you make a blog post about how to reduce temptation when blood sugars are high. Whenever my blood sugars are low, I [don’t] really want to eat but of course I have to but for some reason when they are high, I’m soooo hungry and I’m just tempted to eat tons of carbs! Help!!
I liked this comment for several reasons. One, this person told me it was tough for her to ask me about this in such a public forum, so I applaud her for stepping out of her comfort zone. Two, it’s an excellent blog topic suggestion. Three, I can absolutely relate to feeling hungrier than normal when my blood sugar is high. And four, I’m sure others can, too!
Pizza is great (for obvious reasons) but maybe a little less so when blood sugar is high…
I’ve always kind of assumed that I get hungry when my blood sugar is high because at that moment in time, food is practically forbidden…so it becomes incredibly appealing, even though it’s not always advisable to eat with a high blood sugar (because depending on what food it is, it could make high blood sugar go up even more).
So thanks to this comment on my IG profile, I started thinking about the ways I fight off hunger pangs when my blood sugar is high and came up with these 4 tried-and-true tricks I’ve learned over the years:
#1: Make a smorgasbord of low carb snacks. My mom will appreciate my use of the word “smorgasbord” in this tip because that’s exactly what she used to call the plate of snacks she’d fix for me when my blood sugar was high throughout my childhood. She’d assemble an array of low carb goodies – cheese, pepperoni, olives, nuts, pickles – that would satisfy my hunger without raising my blood sugar even further. As a child, I felt special because I was virtually getting my very own charcuterie board (just minus the crackers) and that made high blood sugars much more bearable.
#2: Drink plenty of water (or other low/no carb beverage). I’ve heard medical professionals, nutritionists, fitness experts, and the like say time and time again that one reason we might feel hungry at a given moment in time is because our bodies are trying to tell us that we’re actually thirsty, not hungry. So it makes a lot of sense to stay super hydrated when dealing with a high blood sugar because it can stave off hunger as well as help flush out our systems.
#3: Seek distractions. I write more about this in an upcoming blog post, but when my blood sugar is high, it’s important for me to not dwell on it too much because it seems like it takes it that much longer to come back down. So I distract myself in every possible way: I find an activity to do, TV to watch, a family member or friend to talk to…this helps me forget about the high as well as any cravings for food that may come along with it.
#4: Remember…this too shall pass! Again, I gotta give my mom some credit for this one because she says this motto to me all the time. When I’m feeling extra hungry and experiencing a high blood sugar, I just try to remind myself that both the high and the desire to snack are fleeting. Sure, they’re not fun to deal with at the same time, but knowing that they’re only temporary makes everything easier.
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:
It doesn’t make sense.
We weren’t given a choice – it’s a simple truth that we’ve learned to accept.
It makes me feel strange, because it’s almost like the other person is taking accountability for my diabetes.
I believe that human beings apologize too much, in general, and it diminishes apologies when they matter most or are most sincere.
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.
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.
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.
Let’s talk about a couple of life-saving liquids for a moment: water and insulin.
Water is a clear liquid that quenches thirst and hydrates. It is essential for human life and costs $1.69 per one liter.
Insulin is a clear liquid that manages blood sugar levels. It is also essential for human life, but it costs $300 per 10 milliliters.
That’s outrageous on its own (and its something I’ve written about before, and will continue to write about, until insulin is affordable and accessible to all).
But what’s even more bewilderingly egregious is the fact that on September 29, 2020, the President of the United States of America lied about his actions (or shall I say, inactions) taken to lower the cost of insulin during the first presidential debate.
My jaw dropped when I heard him boast that he’s reduced insulin prices 80-90% and that it’s “like water” for people with diabetes now.
There are so many things completely and utterly wrong with that statement that it’s almost impossible to cover them all, but let’s start with the bill I paid for my last 90-day supply of insulin. I forked over $200. If I was uninsured, I would’ve had to pay $1,236.15.
I don’t know any water in the universe that costs $200, let alone $1,236.15.
The title of this blog post could be a book title…in fact, I bet there are people who really could devote entire books to this subject. Rightfully so.
I’m not going to mince words here: Under our current President, the cost of insulin has not lowered. And if you think I’m exaggerating his lack of delivery on his promise to do so, then please read the following from my friends at T1International regarding executive orders that were released in July (if you don’t have time to read the entire thing, please read the first paragraph):
On July 24th*, President Trump released four executive orders intended to lower drug prices, including two targeted directly at lowering the cost of insulin for patients who rely on it. Despite his assertion that these orders are intended to “completely restructure the prescription drug market,” these orders will not do anything to fix the underlying cause of the insulin crisis in America. Patients will still need to wait months for the rulemaking process to run its course, and likely even longer after that if these orders end up in court. While T1International is glad that the administration has stated that making insulin more affordable is a priority, these orders miss the mark. We don’t need incremental bureaucratic steps as an election approaches – we need transformative change that will make our medicine more affordable now.
The two orders that are most relevant to the lives of people with diabetes are the order that requires federally qualified health centers (FQHCs) to allow patients to purchase insulin directly from the FQHC at a steeply discounted price, and the order that builds on the plan released by the Department of Health and Human Services to allow for the importation of drugs such as insulin from Canadian manufacturers. Neither order would hold Eli Lilly, Sanofi, and Novo Nordisk accountable for their price gouging, nor would they do anything to reduce the list price of insulin, which has soared by well over 100% since 2012.
As previously noted on T1International’s blog, getting insulin through a 340B pharmacy can help patients to afford this life-sustaining medication. On the surface, President Trump’s order to make it easier for patients to purchase insulin through an FQHC seems helpful. However, his executive order ignores that FQHCs were never the problem with the 340B program in the first place. It is hospitals that are most responsible for taking the discounts offered by the 340B program, and they use those discounts to generate profits, rather than serve patients.
Similarly, #insulin4all advocates know better than most that the insulin they need, which costs hundreds of dollars per vial in the United States, is more affordable just across the border in Canada. However, the Canadian government has already made clear that they are not interested in exporting Canada’s supply of medicine en masse to the United States just because the U.S. government refuses to confront Big Pharma and lower drug prices for the exact same medicine, rendering this policy ineffective on a broad scale.
99 years ago today, Frederick Banting and Charles Best first isolated insulin, which would soon make it possible for people with diabetes to manage their condition. But since then, unchecked corporate greed has put this life-saving medication out of reach for too many people. President Trump was correct in diagnosing the problem and its solution before he even took office when he said that pharmaceutical corporations are “getting away with murder.” Since then, he has considered every policy option available to bring drug prices down except for the most obvious: action that will reduce medication list prices for everyone, including people without insurance. If the president really wants to lower the price of insulin and address the crisis of high drug prices, he already knows the solution; the question is whether he has the political courage to pursue it.
*On September 13, President Trump released a new executive order that would implement a “most favored nation” price for drugs under Medicare Part B and Part D. Patients need relief from predatory insulin prices now, but the President’s executive order won’t deliver. While this Executive Order could dramatically lower insulin costs for some senior citizens if it goes into effect, that could take months or years if it ever happens at all — and patients don’t have that kind of time to wait for change. Rather than make announcements he can tout on the campaign trail, the President should use his existing authority under federal law to bring down the price of insulin immediately.
Frederick Banting said it all when he remarked: “Insulin does not belong to me, it belongs to the world.” And that is a sentiment that I will be taking with me when I go to vote this November.
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.
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.
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.
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.
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”.
Hugging the Cactus 