Tag: dblog

Why is it so Difficult to Order Life-Saving Medical Supplies?

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When it comes to obtaining my diabetes supplies – life-saving pieces of medical equipment – I’ve discovered that it’s not a simple process. It’s not exactly like purchasing something on Amazon with a single click. Rather, it’s a convoluted, head-scratching, infuriatingly long procedure that apparently involves multiple calls to a variety of companies.

As of this writing, it took approximately 4 calls to my endocrinologist’s office, 12-14 calls to Insulet (the maker of my OmniPod insulin pump), 6 or 7 calls to Dexcom (for my CGM supplies), 2 calls to my health insurance provider, and 1 call to Express Scripts just to get everything all straightened away. These calls took place over the course of 2.5 months, and as they grew in frequency, so did my overall frustration and confusion.

The biggest headache was definitely caused by the lack of effective communication between Insulet and my endocrinologist’s office. I needed to get a new PDM, and Insulet’s job was to contact my doctor’s office and get a letter of medical necessity in order to get a PDM shipped out to me. Simple, right?

Why is it so Difficult to Order Life-Saving Medical Supplies_
My call log looked like this for several days in July – so many phone calls to Insulet/OmniPod and to my doctor.

Far from it. About a week after I placed the order for the new PDM, I got an email from Insulet saying that my doctor’s office had failed to return their faxes. I was advised to contact them to determine the delay. When I did, I spoke with a receptionist who, despite my clear explanation of the issue, misunderstood what I was asking for and left me a voicemail to say that she didn’t know what Insulet was talking about seeing as their information showed that I had received a shipment from them. (For whatever reason, she thought I needed more pods, which I did have delivered around the same time that all of this was going on.)

After several more back-and-forth phone calls, I cracked the case wide open: Insulet had the wrong contact information for my doctor. While my endocrinologist hasn’t changed in about a decade, her office location has, and Insulet still had the old one. I felt like an idiot for not realizing this sooner, but then again…why was I the one who was jumping through so many hoops and making so many contact attempts in order to figure out what the hold-up was? It was absolutely ridiculous, but I certainly felt relieved – and satisfied – to have personally solved the mystery.

I wish I could say I had a better experience with Dexcom, but that proved to be similarly headache-inducing. I thought that I was set to receive my supplies after I’d signed a payment plan for a 90-day supply of sensors and transmitters, but when they didn’t show up after a month of waiting, I knew something was wrong. I called Dexcom and discovered that the order, for reasons unknown, just didn’t process, so I had to sign a brand-new payment plan and had my case assigned to a different customer service rep. I was pretty pissed off by the lack of communication, but the one silver lining was that I’d already managed to pay my deductible in full (ha, no surprises there), so my Dexcom supply order would cost me less. Again, it was unbelievable that I never got an update from the company regarding my order’s status, but I did feel a sting of pride in myself for getting it all worked out on my own.

I don’t know why everything about this process is so agonizing. But what I do know for sure is that it seems that the only person I can count on to get my supplies ordered properly, in the end, is myself.

When Diabetes Isn’t Responsible for an ER Trip

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If something unexpected happens to me in terms of my health, I can almost always safely blame diabetes for causing whatever it may be. But when I absolutely, definitely cannot blame my diabetes, I can’t help but feel angry at my body for rebelling at me in ways that it shouldn’t. Particularly when those ways end up with me making a trip to the emergency room.

Let me set the scene: It was a Tuesday evening, around 7:45 P.M. My partner and I were watching an episode of Stranger Things (we’re not caught up yet so please, don’t spoil it for me). Suddenly, I felt an itch on my upper left arm. Like anyone would, I scratched it. But then it got more intense. Like, really, seriously itchy. I rolled up my sleeve so I would be able to scratch with greater ease, and was surprised to feel some bumps emerging on the itchy patch of skin.

I peeled off my sweater and stepped into better lighting in the bathroom so I could examine the area better. There was a large patch of red, inflamed skin on my arm that was covered with bumps that looked like hives. I was dumbfounded. Unsure of what triggered the hives, but alarmed by how swollen and irritated my arm looked, I shot a couple text messages to my EMT father and nurse best friend, who both advised me to get my arm looked at stat.

HUGGING THE CACTUS - A T1D BLOG
Stranger things have happened in my life with diabetes (just had to sneak a pun in there)

And that’s how I found myself in a crowded emergency room, tearful and furious at my body, on a random weeknight. Part of me was relieved that my diabetes didn’t seem to have anything to do with this (but see my recent post on Metformin and you’ll understand that I have some theories about that being the cause). But the other part of me was so pissed off that my body just couldn’t be normal for once. I felt that my body was lashing out at me like an unruly child, declaring its anger towards me in the form of an incredibly itchy, ugly rash. I couldn’t help but stew over the whole situation the entire time I waited to see a doctor.

Long story short, a dose of Benadryl cleared up the hives within an hour. The doctor was unable to determine a cause, since I couldn’t think of anything new introduced to my diet or any new scents/lotions/detergents used in my household. And insect bites got ruled out because the doctor was certain that a bite would be more localized and not spread in a giant patch on my arm. I’m still perplexed at how it happened, but I guess I just have to make peace with the fact that it did and be grateful for 1) making a total recovery from it and 2) not experiencing any issues with my blood sugars as a result of it.

When diabetes isn’t responsible for an ER trip, it means that it’s okay to still be upset about it, but also glad for not having to explain the intricacies of diabetes to every doctor and nurse that walks into the room…because I can’t think of a single PWD that would ever feel happy about taking on that happy task.

Diabetes in Pop Culture: Is it Really That Hard to Get it Right?

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I used to be an avid fan of the cultural behemoth, The Walking Dead. Imagine my delight and surprise when type 1 diabetes actually made a cameo in one of the episodes! T1D, in the zombie apocalypse! What could go wrong?

Turns out, a lot. A minor character in the show’s sixth season passes out, only for a main character to flock to her side just in time to give her a shot of insulin. Within moments, she’s totally fine, though – spoiler alert – she gets attacked by zombies and doesn’t survive at the end of the episode.

What’s wrong with this scenario is that if a person with diabetes passes out like that, it’s more than likely that their blood sugar is low, and the last thing that they need is more insulin. I can’t imagine her blood sugar being high seeing as it’s the ZOMBIE FREAKING APOCALYPSE and supplies are scarce. I doubt she’s eating, well, anything, let alone substantial meals. And how the heck does insulin stay fresh during the end of the world, anyways? I don’t necessarily expect a TV drama to explore that in a tight 60-minute time frame, but these are things to consider, as well as details that leave unusually informed viewers like me a little bemused and irritated.

Diabetes in pop culture_

And it’s not just The Walking Dead – it’s a LOT of shows that make mistakes or omissions that can be eyebrow-raising. A few shows that come to mind include The Big Bang Theory, Hannah Montana, and even my beloved soap, General Hospital. The errors have been to varying degrees, but a common theme among countless television shows is perpetuating the stereotype that all types of diabetes are caused by a poor diet; specifically, consuming sweets. It’s always an extremely cheap joke, and one that’s gotten stale in its overuse.

Surprisingly, reality TV doesn’t help dispel any myths, which is a bit ironic. Recent episodes of Southern Charm and one of the Real Housewives franchises spread diabetes misinformation that was just ludicrous to me. In the former, a licensed anesthesiologist implied that his girlfriend shouldn’t eat a pastry because it’ll cause diabetes (insert eye roll here) – last time I checked, an anesthesiologist does not know the intricacies of the endocrine system, so who is he, as a medical professional who ought to know better, to say something like that? And in the latter, one woman was scolding her T2D husband over not taking care of himself. She explained his condition in a confessional…but did a really rotten job of it. If I didn’t know anything about type 2 diabetes, and I “learned” about it from this source, then I would be seriously misled.

I’m not trying to be oversensitive here, but it is hard for me to understand why pop culture struggles to get certain aspects of diabetes right when it appears in various story lines. There’s a wealth of correct information out there that writers could rely on. It’s a shame that they don’t, because whether they mean to or not, all it does is add to the confusion and general misunderstanding of all types of diabetes.

Needless to say, pop culture in this day and age has a long way to go when it comes to the portrayal of diabetes.

 

Why Waiting for Prescription Refills Feels Like a Pending Punishment

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I’ve been waiting.

I’m waiting, impatiently, to learn just how much I’m going to have to pay for a 90 day supply of insulin.

I’ve been waiting for what will inevitably feel like a punishment.

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It’ll feel like a punishment because it will feel harsh and unavoidable. And it’ll be more intense than is fair because my only offense is having a pancreas that doesn’t work the way that it should.

Every time I log into the Express Scripts website, I feel a sense of dread sweep my body. I anxiously click around the portal until I get to the recent order screen (see above image). My eyes immediately flock to the blue box that will eventually display how much money I owe for my insulin.

It’s a process that reminds me of checking my grades when I was in college: After I took an exam, I’d enter my username and password into the student portal to find out whether grades were posted. I’d repeat this process multiple times a day until I found out how I scored. It was a nerve-wracking routine back then, but I wish I could tell my younger self that that was NOTHING compared to looking up the cost of my insulin.

 

Metformin Update #3: Is it My Imagination…or Side Effects?

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Frequent readers of this blog are probably familiar with my journey with Metformin. If you aren’t, or want to brush up on my history with it, read here, here, and here in order to get caught up.

The big white “horse pill” that is known as Metformin has become a relatively solid part of my routine in the last six or so weeks. I’ve skipped doses here and there for varying reasons (i.e., on occasions when I’ve had two or more alcoholic beverages); otherwise, I’ve been taking it and monitoring my blood sugars carefully each day.

But apparently, my blood sugars aren’t the only thing I should be watching diligently.

METFORMIN UPDATE #2

Just like any other drug out there, Metformin comes with side effects…which I totally chose to discount from the beginning, mainly because my endocrinologist thought that the extended release tablets would mitigate the likelihood of side effects. I’m questioning that logic, though, after experiencing indigestion and general stomach discomfort within a few hours after taking my Metformin pill.

It didn’t happen just once. There were at least three consecutive days that I experienced these symptoms. Within an hour or so after eating dinner, I felt uncomfortably full – like I’d eaten a whole Thanksgiving meal instead of a normally portioned dinner. I know that I wasn’t eating a larger quantity of food than usual, and since I typically have a semi-insatiable appetite, I knew that it just had to be related to my Metformin dose.

I decided to do some more research into the side effects of Metformin. And I was pretty surprised by what I saw. Shocked, actually. Because evidently, a massive array of side effects can occur on Metformin. The stomach discomfort I’d experienced was common, but other side effects that caught my attention included restless sleep, muscle pain, cramping, and a rash/hives.

Very interesting. I’ve felt all of those things in the last few weeks. I chalked it up to overdoing it with my exercises, but…it’s not like I was doing anything new or particularly strenuous in my routines. I do a combination of cardio and resistance training, for about an hour most days of the week. I always make sure to stretch before and after working out, and yet I felt a soreness and achiness (mostly in my legs) for a few nights in a row a couple weeks back. There was even one night that I tossed and turned so much that I hardly slept a wink – the restlessness in my legs was that bad. And the rash/hives? I’ll go into more detail in a future post, but on a random Tuesday night, I experienced a breakout so bad that I wound up going to the ER. They cleared up within an hour or so of a Benadryl dose, but it was still a scary experience.

Okay, so I think I can safely blame all of these issues on my Metformin intake. But that still doesn’t quite answer why I was experiencing multiple symptoms so suddenly. My theory is that my body was struggling to adjust to taking Metformin consistently, and as a result, I was feeling the side effects. There’s no way for me to be sure, but I think this warrants another experiment…another break from Metformin. My blood sugars have been good on it, but have they improved so drastically that I can’t imagine life without Metformin?

The answer is a resounding no.

I’ll likely consult with my endocrinologist at some point to tell her my thoughts and theories. But for now, I’m taking a break for an unknown period of time to see if there’s any change in how my body feels. We’ll see how it goes.

Do You Have 2 Minutes to Spare?

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If you’re reading this post, then the answer is YES – of course you have 2 minutes to spare. In that amount of time, you can share your opinions and help my dear friend, Heather, with her research.

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Make your opinions heard by taking this survey.

Please click this link to access the survey. It’s very simple: You’ll see 24 phrases that relate to diabetes in some manner. You’ll rate how often you see these phrases around the Internet using a scale of 1-5. Then, you’ll share which one resonates with you the most and which one you see the most on various diabetes online communities. And…that’s it! You don’t even have to share your name or any of your contact information. It’s quick, easy, and you’ll get to share your opinions in a way that will make a difference. I’d say that’s a great way to spend 2 minutes, wouldn’t you?

It’s Not Called Cryabetes

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C’mon, Molly. Get it together. It’s not called cryabetes. I stared at myself in the bathroom mirror, giving myself an internal pep talk to keep the tears from flowing down my cheeks. I felt a little uneasy on my feet, so holding a steady gaze proved to be challenging after a few moments.

Why was I on the verge of an emotional breakdown? It was all my blood sugar’s fault, of course. For about an hour, I’d been hovering in the upper 60s to lower 70s. There are far worse blood sugar ranges to fall in, but I’d been feeling the classic symptoms of a low for that entire span of time – and it was really testing my fortitude.

My self-talk was fruitless; within seconds, the first few tears escaped from my eyes. It wasn’t long before a couple tears turned into full-fledged bawling. Alarmed by my outburst, my boyfriend tried to calm me down (he was aware of my low blood sugar situation) and attempted to use humor to get the crying to stop. Very quickly, he discovered I was a bit beyond that and that it was best to just let me be sad.

I was sad because I was tired and wanted to go to bed but it didn’t feel safe for me to sleep just yet. Safe to sleep. Can you imagine not feeling safe enough to fall asleep, even in your own bed surrounded by your own blankets in your own room, with your partner nearby?

So the tears came and went because, even though I tried my damnedest, I still felt so out of control in this situation. Not knowing how long it would take my blood sugar to come back up to a level that I felt safe to sleep at, not knowing what exactly caused this predicament in the first place, and not being capable of being mentally stronger than my diabetes all in that moment in time got to the best of me.

Definitely very chronically UN-chill of me, right?

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So sure, diabetes isn’t called cryabetes. But that doesn’t mean my emotional lapse – or any emotional lapses related to diabetes – wasn’t warranted. Crying can be healing, and in this moment in time, it was the only thing, oddly enough, that could make me feel a tiny bit better.

Favorite Things Friday: Vial Safe Insulin Protector

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One Friday per month, I’ll write about my favorite things that make life with diabetes a little easier for me.

Okay, so it’s DEFINITELY been a few months since I last wrote about a favorite thing of mine. I admit that I started running out of things that I deemed worthy enough of sharing with my readers! It felt silly to continue doing it on a monthly basis if I didn’t have anything particularly great to write about, so I stopped, promising myself that I’d pick it up again the next time I got excited about a product.

Enter the Vial Safe insulin protector sleeves that I just ordered.

Favorite Things Friday_ Vial Safe Insulin Protector.png

I’d seen posts about these little insulin vial jackets before on Instagram, and I always had them bookmarked in the back of my mind as something I should order. After all, I’ve felt the agony of a shattered insulin vial before, and let me tell you: It’s awful. I was somewhat young when I broke my first (and hopefully only) vial and basically brushed the whole thing off because I assumed that it would be easy (i.e., free) to get a replacement. But now, at age 26 and in my first few months of being on my own health insurance plan, I know better. Accidentally breaking an insulin vial in this day in age seems like the equivalent to setting a stack of hundred dollar bills on fire – completely pointless, unnecessary, and wasteful.

So I’m betting that my two new Vial Safe sleeves will help protect me from ever experiencing a shattered vial again. I’m especially looking forward to bringing them with me on my next trip, as they’ll surely keep my vials more secure as I have the tendency to shove them wherever I can find space in my luggage.

I bought my Vial Safe insulin protectors on Amazon, but there also available for purchase here. And no, I wasn’t asked (and I’m definitely not being paid) to write about these or any other products I’ve ever mentioned on Hugging the Cactus – I simply believe in spreading the word about a quality item if it has helped make diabetes management easier for me in some way.

 

Learning to be Chronically Chill

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I’m not sure that I’ll ever fully be at peace with my diabetes.

I have days when I hate it a little less, sure. I even have days when it doesn’t bother me at all. But true acceptance of my diabetes? I used to think I had it…not anymore. In 22 years, there’s just been too many times that I’ve detested every aspect about life with diabetes: the painful shots/needles, the constant planning, the many doctors appointments, the countless hours of sleep lost, the amount of money that goes into caring for it…the list could go on and on.

I know, I know…this all sounds extremely negative. It’s a little unlike me. But let me tell you what, instead of forcing myself to unequivocally accept my diabetes, I’m learning how to be what I’ll call “chronically chill” with it. It’s a bit of a play on words, you see. Diabetes is considered a chronic illness (I prefer to think of it as a condition; to me, “illness” has an ickier connotation). By definition, the word chronic means long-standing or permanent, and I’ll always have diabetes. So it’s about time that I start to be chronically chill – persistently cool, relentlessly alright-fine-I-get-it-you’re-not-going-away-any-time-soon – with my diabetes.

Learning to be Chronically Chill
Me, being my chronically chillest, on the beach.

To me, this is different than accepting it. Others might disagree, which is totally fine, but I think that accepting diabetes means hugging it warmly, with open arms. I don’t want to do that. Rather, I want to get to a place where I can be just…fine with my diabetes. Just let it coexist with me. I never want it to get to the best of me, but I also don’t want it to think that it can stay with me forever. I guess it’s the optimist in me that still thinks a cure is right around the corner.

How am I going about this process of being chronically chill? I’m taking it a day at a time. I’m trying to not get bogged down so much by the small things. I’m trying (and this is super mega hard for someone like me) to come to terms with the fact that I can’t have control over everything in my life. I’m trying to focus more on things like time in range versus my A1c. I’m trying all of this at once, and I believe that it will help me achieve the chronically chill status I’ve described.

And if the process goes more slowly than I want it to, I’ll just refer to the above photo of me on the beach from time to time…because it’s hard to find a place where I’m more chill – my most serene self – than when I’m near the sand and surf.

Doing Everything Right and Still Getting it Wrong

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One of the most frustrating things about having diabetes is feeling like you’re finally understanding it, perhaps even mastering it, only for it to lash out at you and make you feel like you don’t know shit about it.

It’s when you do everything right – check and treat accordingly, eat properly, exercise sufficiently – and still get it wrong when your blood sugars don’t behave the way they should.

I really hate when this happens, but I loathe when it happens on vacation…which is exactly what happened to me last week when I was in Maine for a few days.

Things started going awry shortly after I woke up (if only I knew then that I was in for a DAY!!!). I ate breakfast and my blood sugar swiftly started to rise. But I didn’t panic, because that’s what I wanted to happen. We’d be walking all around town for part of the morning and most of the afternoon, so I wanted my blood sugar to be on the higher side so that my chances of dropping dramatically in the heat were lower. I made the right call – soon after we got downtown, I noticed a diagonal down arrow on my Dexcom app. Things were headed in the right direction…or so I thought.

Not long after I spotted the diagonal arrow, I started to feel a little low-ish. Not super shaky or anything, but just a bit disoriented. I decided to pop into my favorite candy store to fill a small bag with treats so I had something sugary to munch on that would prevent a bad low blood sugar.

Those were mistakes number one and two…not consulting with my CGM again before eating candy, and going to town on it because it was CANDY and it tasted delicious.

Doing Everything Right and Still Getting it Wrong

Within a half hour, I was rising up, up, and up. I took a small amount of insulin to correct it, not wanting to be too aggressive and risk a real low. But as I walked around the amusement park with my boyfriend and his family, I just wasn’t coming back down like I thought I would. I lingered in the mid-200s for much of the early afternoon, and by the time we stopped for lunch, I was rage-bolusing to bring my numbers down faster. I even chose a lower-carb lunch option in the hopes that it’d stave off another high blood sugar, but nope, the BG gods were not in my favor that afternoon. As we moved from the amusement park to a brewery (a drastically different change in locale, I know), I bolused once again, and then noticed that the batteries in my PDM were low.

And that actually wasn’t a problem, because I was prepared enough to have spare triple A batteries on me – thank goodness! I took the old ones out, popped the new ones in, and waited for my PDM to come back to life. And it did…but it asked me to input the month, day, and year.

Dammit. THAT’S never a good sign. I entered the information and the system accepted it, and then my pod failed immediately after, which meant that I had to ditch the brewery and the group of people that I was with to get back to the house we were staying at as quickly as possible to put a new one on.

It doesn’t get much more irritating than that.

(Later, I discovered that my PDM’s internal battery was going, and that this behavior would occur every time I replaced the triple A batteries. Needless to say, I’m awaiting a new PDM from Insulet, because it’s just not smart to continue using an aging PDM.)

By the end of this day of turbulent blood sugars and unpredictable medical device malfunctions, I was mentally beat. I felt like I’d been thrown into the roughest of ocean waters and forced to tread water for hours in order to keep my head above the surface. It’s exhausting to know that, when it’s all said and done, I was really trying to do the right things and take care of myself. I was SO DANG PREPARED with those extra triple A batteries, for goodness’ sake! But man, diabetes…just when I think I know it better than anything else, it throws me for a loop and I remember a saying from Professor Mad-Eye Moody of the Harry Potter series (of course I’m talking about Harry Potter again, don’t act surprised): CONSTANT VIGILANCE. I’ve got to be aware of my diabetes at all times. I’ve got to know how to react and when so that my diabetes will remain in my charge – not the other way around.