COVID-19, Chronic Conditions, and…Telecommuting?

First, let me apologize for adding to what seems like a never-ending cycle of news and media about COVID-19, a.k.a. the coronavirus. But I wanted to write this post because a friend of mine works for a company that sent out a communication about it that I found…interesting, to say the least.

The email in question was about the company’s current coronavirus protocol. The following is an excerpt from the email, provided by my friend:

If you have or live with someone who has a medical condition that the WHO has highlighted as being at higher risk for complications from the virus (elderly, immunocompromised state, chronic conditions such as diabetes, chronic lung disease, and cardiovascular disease), you are strongly urged to work from home if possible with your job function. If you cannot work from home, please consult with your manager.

So…the wording of this email struck me as a little odd for a few reasons. If I worked for this company, I’d wonder: 1) Just because I have one of the named chronic conditions, does this mean I must seriously reconsider my present working environment even though nobody in my office travels internationally? 2) What exactly does “strongly urged” mean, anyways? and 3) What is a manager expected to do if someone cannot work from home, for whatever reason? Make up their own set of rules? Force someone to come in or not come in? And if the latter is the case…would a paycheck have to be forfeited?

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I’m absolutely amazed that I managed to find a stock image that wasn’t terrifying for this particular blog post and topic…

As I pondered the answers to these questions, I also started to think that there was a chance I was overreacting to the wording of the email. So I asked other friends how they felt about it and they reacted the same way I did. Everyone was generally confused by the message that this was saying (or not saying) about people living with chronic conditions and how they should handle a situation like this.

Plus, I can’t shake the feeling that emails like this just add to all the hype/panic that we’re already being inundated with, and if I were to receive something like this, it certainly wouldn’t do anything to ease my normally-anxious mind. It’s getting more and more challenging to tune it all out…

…but on the bright side, at least I know how to properly wash my hands and sneeze/cough into my elbow. So I’ll continue those common-sense practices every day, and when I’m doing my own work, I’ll be glad it’s from the comfort of my own cubicle.

7 Questions People Always Ask Me About Type 1 Diabetes

This blog post was originally published on March 2, 2019 at Hugging the Cactus. I’m reposting it now because…these seven questions are timeless.

Human beings are naturally curious creatures. So it’s never really surprised me when, upon discovering my T1D, people tend to ask me boatloads of questions about what it’s like. And it’s definitely not at all shocking that many of these questions are recurring.

I've missed you terribly!

Here’s a list of seven questions that I’m almost always asked when I encounter someone who’s just learning about my diabetes. You’ll notice a trend as you read, because even though there’s “no such thing” as a stupid question, this list kinda gets dumber as it goes on. There, you’ve been warned…

7. What does it mean when your blood sugar is high/low?
This is definitely a fair question. I never expect someone who is unfamiliar with diabetes to know the meaning of hypoglycemia or hyperglycemia. I actually kind of appreciate being asked this question, because it helps me spread awareness. The more people that know how to react in severe high or low blood sugar cases, the better, IMHO.

6. Why do you wear all of those devices?
Another decent question – I never mind explaining how my CGM and my pump work, but I do mind when people say ignorant things, like “Oh, are those patches to help you quit smoking?” *Eye roll*

5. Can you eat/drink [fill-in-the-blank]?
Ugh…I get why people ask me this, but it’s a little more tiring to explain. My answer is usually along the lines of: “I can eat or drink whatever I like, but I need to take insulin to account for it. So I try to eat a limited amount of carbs at a time, because that means I have to take less insulin, and there’s less room for error.” But even after that easy-to-understand explanation, the typical follow-up questions are “BUT CAN YOU EAT CAKE/COOKIES/ICE CREAM/ANY SUGARY FOOD?!” And that’s when I lose a bit of my patience, TBH.

4. Does it hurt when you check your blood sugar/give yourself a shot?
I mean, no? I’m not trying to be facetious or anything, but really, after 21+ years of checking blood sugar and giving myself insulin multiple times per day…there’d be a real issue if it hurt every single time. I concede that there are the occasional sites that sting, but it’s not nearly as bad as many people seem to assume.

3. What’s that beeping sound/ARE YOU GOING TO EXPLODE?!
Honestly…use common sense. What’s the likelier scenario here: That my devices have built-in alarms, or that I’m going to spontaneously combust?

2. How did you get diabetes/WHAT DID YOU DO WRONG?
This. is. such. an. ignorant. question. Nobody, myself included, did anything “wrong” that resulted in my diabetes diagnosis. I didn’t catch it and no number of lifestyle changes could have prevented me from developing diabetes. My immune system merely decided to attack and destroy the insulin-producing beta cells that lived in my pancreas. There’s no real answer as to how diabetes is caused, though genetics likely play a role in it. Don’t worry, you won’t “catch” the ‘betes by being in my presence.

1. Do you have the…bad kind of diabetes?
This question is THE WORST of them all because there is no good kind of diabetes! Gestational, type 2, LADA…none of them are favorable. They all suck. They all require constant care, regulatory medications, and endocrinology expertise. So please for the love of all that is sacred and holy, next time you hear someone ask this question, gently inform them that there’s no such thing as good/bad diabetes.

 

It’s Not Called Cryabetes

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?

Dualitee Apparel

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.

Learning to be Chronically Chill

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.

Sugar and T1D: Friends, Not Foes

For someone who doesn’t eat sugar…. you sure do know how to bake….damn those were good

My coworker sent this to me via instant message as a way of thanking me for the cupcakes I’d brought into the office that morning. Before 11 A.M., a dozen and a half or so “butterbeer” flavored cupcakes I’d created were devoured by my coworkers, who gave rave reviews on their taste, much to the delight of this wannabe pastry chef.

This particular message of praise, though, made me simultaneously smile and cringe: It was that comment, again. The one about sugar and not being able to eat it.

Everyone in my office knows that I have type 1 diabetes. And because I make it my mission to spread awareness of how to react in certain situations that a T1D might encounter, most people I work with know that in cases of low blood sugar, fast-acting carbohydrates (i.e., sugar) are essential as they’re the fastest way to fix a low.

Calais University
Sugar saves my life from time to time…and no, that’s not an exaggeration.

But every now and then, I’m reminded that no, people don’t always remember what you tell them about diabetes. It goes to show that there’s always room for more advocacy…which is why I write about diabetes and won’t stop talking about it to those who want to know more.

As a result, I’m constantly telling people that I can and do eat sugar; in fact, it saves my life from time to time. Maybe that’s the subconscious reason why I love baking cupcakes, cookies, and more: For a girl who relies on sugar sometimes, I sure do know that a baked good every now and then is what helps me stay alive.

And the Nominee is…Me?!

Friends, I am pleased to share that I have been nominated for a WEGO Health Award. My blogging for Hugging the Cactus has qualified me to be a Patient Leader nominee for the “Best Kept Secret” award, which is very exciting to me! What’s more, if I advance to the finals round, I may be able to win a trip to Las Vegas for the HLTH conference in October. This would provide me the opportunity to be around other Patient Leaders who, I’m confident, I could learn so much from, as well as the rare chance to attend a health-focused conference based on merit rather than cost.

What exactly are the WEGO Health Awards? They were created to recognize and honor those who strive to make a difference in the online health community. In the past few days, I’ve scrolled through the growing list of nominees who are advocates for all sorts of conditions, from anemia to ulcerative colitis. It’s quite eye-opening to see just how many health topics inspire individuals to spread awareness via social media, blogs, podcasts, YouTube channels, and more. And it truly is an honor to be listed among these incredibly inspiring nominees.

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Well, this is just plain cool.

If you feel that I deserve to move on to the semi-finalist round, please follow this link to endorse my nomination. By clicking the link, you can view the other nominees and their profiles, which I strongly encourage so you can find out for yourself the sheer volume of skilled storytellers out there. Plus, you never know, you might just discover someone who you can relate to or who inspires you. After all, in a world of chronic conditions that can feel so isolating, isn’t it always a comfort to find out that you’re not alone?

 

The $2,000 Mistake

Have you ever received an email that made you stop breathing for a moment? Did it feel like time stood still as you blinked rapidly and tried to comprehend the meaning behind it?

It sounds like a dramatic overreaction, but imagine getting a notification from your pharmacy notifying you that your prescription would cost almost $2,000. That’s a big old chunk of change. The mere thought of paying that much for a supply of insulin makes my heart race and my palms sweat.

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I nearly keeled over when I saw this dollar amount.

I’m happy to report that this was a giant mistake; for whatever reason, my doctor’s office sent my prescription for Humalog to my local pharmacy, even though I explicitly told them that I use Express Scripts for my insulin orders. It was a total mix-up, and the approximately $2,000 was an amount that I would pay if I didn’t have any insurance coverage. I do, and though I’m not sure how much I’ll be paying for my insulin yet, I know that it can’t possibly cost this much.

I’m relieved that I was able to call the pharmacy and straighten this out without spending a cent of my money. But it was also a major wake-up call to a reality that many people are forced to face when it comes to refilling insulin prescriptions. It’s not fair. (That last sentence is the understatement of the century.) I can’t make any sense of it and I don’t know how many people have no choice but to fork over such a large sum of money on a monthly basis in order to live. Thoughts of those individuals and their dire situations scare me far more than navigating the world of health insurance ever could.

While I didn’t appreciate the mini heart attack this email triggered, I guess I am glad that it alerted me to the fact that I’m going to have to be aware of things like this going forward. As I figure out my health insurance costs and coverage, I anticipate more confusion, surprises, and expenses…but hopefully I can also expect/experience a pleasant discovery or two along the way.