Don’t Tell Me How My Diabetes Affects Me…Please!

This post originally appeared on my blog at ASweetLife.org on August 8, 2016. I modified the title a bit by adding in the word, “please”…because a little extra kindness can work wonders! This particular blog post is still very relevant to how I feel when strangers make uninformed comments on my diabetes. The bottom line? If you don’t know me and my medical history with diabetes, then please, please, PLEASE avoid telling me how I should handle it. Much obliged!

I like to think that I am fairly tolerant of people asking me questions about my diabetes. From “What’s that thing on your arm?” to “What do glucose tablets taste like?”, I’ve heard quite the gamut of queries from friends and strangers alike over the years. More often than not, I try to provide honest and thoughtful answers to these questions and field follow-ups with patience.

I don’t respond well, though, when someone TELLS me something about my diabetes rather than ASKING me. It’s one thing if you’re telling me something that you know to be factually correct about diabetes as a whole, but it’s completely different if you’re telling me something about my diabetes as it pertains to me alone. And when I say “I don’t respond well” to that, I mean to say I keep smiling on the surface, but on the inside, I’m seething.

It’s been awhile since I’ve dealt with annoying assertions of this nature; unfortunately, this past week I had to grin and bear through two incidents in which I was being told what I should and should not do. (Note that I chose to not specify when and where each comment occurred, for my privacy and the privacy of others!)

Scenario One: At an undisclosed location, I’m helping myself to dinner. I add a cookie to my plate. A person in the vicinity says, “You shouldn’t be having that!”

This is a classic case of what you should never say to a person with diabetes. Most T1Ds will tell people that we can eat whatever we like, as long as we do so in moderation and remember to bolus for it accordingly. I was a little taken aback to hear this remark considering this person has known me since birth; therefore, they should realize I know how to take care of my diabetes by now. Initially, I was annoyed with this comment, but I decided to be graceful about it and say, “Yes, I can have that—I can eat whatever I like, within reason,” before exiting the room.

please, don't tell me how my diabetes affects me
Between the title and my post…this image is self-explanatory.

Scenario Two: At an undisclosed location, I’m cold, so I wrap myself in a blanket. A person in the vicinity says to someone else close by, “Molly has poor circulation because of her diabetes. That’s why she’s always cold.”

In the 18.5 years that I’ve had diabetes, I’ve never had someone tell me that it’s the reason why I get cold from time to time…just like anybody else might, whether or not they have a chronic illness. This comment really bothered me because I’ve had plenty of conversations with the individual about my diabetes, and I’ve never once linked it to my body temperature. Last time I checked, my circulation is perfectly normal. No doctor has ever told me that it’s poor. Plus, with air conditioners being put on full blast all summer long, I think it would be natural to get a little cold after sitting inside all day long without exposure to the sun’s warmth. I wish I had said something to put this person in their place, but wanting to avoid confrontation, I forced a smile and changed the subject.

In both of these situations, I probably wouldn’t have felt irritated if these comments were phrased at questions. Believe it or not, there’s a huge difference between telling me that my diabetes affects my circulation and asking me whether it does. Regardless of how diabetes-related remarks, queries, jokes, and references are phrased, though, I’ll still try hard to handle them with poise and a smile. I may internalize my frustration at the time of a bothersome statement, but it’s there and it does get to me.

Advertisements

The Amazing Flying CGM!

I reached into the front pocket of my sweatshirt. My tube of glucose was there, but nothing else…oh, shit.

My CGM receiver was gone.

“C’mon, pup, we’ve gotta find it,” I said to my canine companion, Clarence. He was all too happy to oblige as we sprinted back up the street to find my receiver.

It couldn’t have gone far…

My anxious eyes scanned all around our surroundings. Surely, my CGM’s bright pink case would pop against the dull browns, grays, and greens that painted the wet landscape.

Where WAS it?

Did I actually leave my house with it in the first place? Or was it still sitting atop my nightstand with my glucometer?

All I knew was that I’d better find it soon…or the chances of it getting run over by a car going at least 40 mph were very good.

cgm
Have you ever had your CGM (or any other diabetes device) take off in flight?

Not here, not there…

Really, Clarence, it’d be great if you could help me look for it rather than pick up sticks…

Dammit, what am I going to do if it’s gone for good…

“AHA!” I triumphantly said out loud as I spotted the neon pink rectangle, nestled on a patch of damp earth. I tugged Clarence, who was just focused on sniffin’ and walkin’ as a young puppy would be, over to where my CGM was lying face-down. It was almost like it was too exhausted to continue on our walk.

Or perhaps it had just wanted to leap free from the confines of my pocket and fly high…just as my blood sugar had that morning. Who knows. I was just glad to have found it. Reunited, I tucked it safely into a different pocket – a zippered one, this time – and continued my walk with my happy puppy.

 

Hello, 26…and Goodbye, Health Insurance

Well, today is my 26th birthday. As I alluded to a few months ago in another blog post, I’ve pretty much been dreading this particular birthday.

Love always wins.

Today’s the day I’ve got to switch health insurance carriers. I’m going off my parents’ plan and signing up for the employee plan offered by my company.

Am I nervous? Yes. Am I scared? Hell yes. But am I alone? Hell, no. I’m lucky enough to be able to say that I’ve got so many resources in my life – family, friends, the DOC –  who will help me navigate the confusing world of health insurance.

I’m also well aware that many, many other T1Ds have been in this position before me. While it’s impossible to forget the horror stories about people who have been unable to afford their medication due to a lack of insurance coverage, or who have a hard time paying for insulin and other diabetes supplies in spite of having health insurance, there’s so many more people who have found ways to make it work without having to sacrifice their health or general well-being.

So I’m going to focus on how blessed I am to have resources all around me, as well as a job that offers decent health insurance (or just a job, period…there’s plenty of jobless people out there who have double the hurdles to jump over compared to someone like me). Today, I won’t dwell on my fears and anxieties about health insurance. Instead, I’ll celebrate another year of life and enjoy the day.

T1D and Grocery Store Paralysis

Yellow roses, gallon-sized Ziploc bags, and iced tea. That was all I need at the grocery store. Three items. I should’ve been in and out in five minutes flat, but diabetes had other plans.

It was the morning of my cousin’s bridal shower and as one of her bridesmaids, I was running amok, getting myself ready and prepping like crazy for the party. As a result, it was the kind of morning that left me little time to consider my diabetes and how it might be affected by the day’s events.

I Volunteer To Drink!.png
It’s strange to feel such panic and confusion in a grocery store, of all places.

So I didn’t really think twice about having a bagel for breakfast. Normally, I avoid bagels because eating one tends to make my blood sugars run a little high several hours after consuming it. But a bagel was a quick and easy breakfast on such a busy morning. After devouring the cinnamon bagel smothered in cream cheese (hey, if I was going to indulge on a carb-heavy breakfast, I wasn’t about to skimp out on the spread for it), I got a phone call from my aunt, who asked me to run to the grocery store before I made my way over to her house for final bridal shower set-up.

She gave me a very short, very manageable list of three items to get at the store, so I was certain that it would be fast trip. Once I was showered, dressed, and finished with my make-up and jewelry, I loaded up my car with various decor for the party and headed to the grocery store. I parked in a spot far away from other cars so I could pull out of the parking lot easily, and hoofed it into the store.

I’d just loaded my basket with 18 yellow roses (the only 18 yellow roses in the store, in fact), when my CGM started blaring my low alarm from within my backpack. I was surprised – I figured there was no possible way that I’d go low because of the bagel.

And that’s when what I’ll call “T1D paralysis” hit me.

I froze. I couldn’t remember which aisle I might find plastic Ziploc bags in, let alone that I should grab some glucose tablets from my backpack to correct the low. It sounds ridiculous, but truly, I felt paralyzed and panicked as the alarm went off again, this time more urgently as my blood sugar was tumbling down faster than I could’ve predicted.

By some miracle, I did eventually snap out of it (after what felt like 3 hours but was probably only about 5 minutes). Shaking, I found the plastic bags I needed and zoomed over to an express checkout lane, babbling nonsensically to the cashier as he rang me up. I booked it to the car, cursing myself for parking so far away, and collapsed into the driver’s seat. It was only then that I remembered I needed something for my blood sugar, so I fished a box of raisins out from my purse and wolfed them down.

I sighed as I sat there in the car, waiting for my blood sugar to come back up. Three items at the grocery store was all I needed. But what I wound up with in addition to them was a scary feeling of helplessness – completely and utterly immobilized in a setting in which I was the only one I could rely on to help myself – that freaked me out. I don’t know whether it was the abnormally carb-y breakfast or the stress of party preparations, or some combination of the two, but I do know that this sensation isn’t something I want to encounter again any time soon.

 

 

Why I Refuse to Quit Carbs

This is an original post I wrote that was published on Hugging the Cactus on January 26, 2018. I am republishing it now because there’s been some buzz on the Diabetes Online Community recently about different diets people with diabetes “should” and “shouldn’t” follow…and this sums up my feelings on being told what choices I should make when it comes to my own health!

Recently, a random person on the Internet criticized my choice to incorporate carbohydrates in my daily diet. Thanks for the unnecessary judgment, stranger!!!

I’m not really upset about the comment, though, because it prompted me to reflect on why I consume carbs.

Have a slice!
*Oprah Winfrey voice* I. Love. Bread.

For me, it’s about more than just enjoying (relishing, adoring) the taste of carb-heavy substances both starchy and sweet. Carbs also help me achieve balance in my blood sugars. For instance, I find that consuming a serving of carbohydrates at dinnertime keeps me steady as I move through the evening hours. Say that I’m eating grilled chicken with a side salad for dinner. That’s a good meal by itself, but I like to complement it with a carb like half a cup of mashed potatoes or brown rice. I’ve noticed that the carbs kick in more slowly when they’re consumed with minimal or zero-carb foods, thanks to the power of the glycemic index.

The glycemic index is, in short, a measure of how quickly the carbohydrate content of foods will affect blood sugar levels. Since learning about it in college and subsequently researching the glycemic indices of various foods I eat, it’s been an immensely useful tool in determining the makeup of my meals throughout the day. Knowing the glycemic index of a wide array of foods also helps me figure out the timing of my insulin doses; in turn, preventing crazy spikes or crashes after eating.

I can’t shortchange carbs for the fact that they literally save my butt sometimes, too. When I’m experiencing a low blood sugar, nothing BUT carbs will bring me back up to a normal level. Whether it’s carbohydrates from healthy fruits or straight-up candy, it’s giving my blood sugar the surge it needs to keep me going. Like many things in life, it’s a matter of moderation – making sure I don’t consume TOO many carbs when I’m experiencing a low.

If you’re someone who thrives on low carb, high fat diets, that’s great! I know that many people find this to be a successful method in achieving target blood sugars. But for me, my tried-and-true technique of balancing carbs, fats, and proteins is always going to be my ideal strategy. Just because that’s what works for me doesn’t give anyone a right to criticize me for it. I’m here to live my best life, as we all should try to do. Shouldn’t we encourage one another to thrive, instead of judging?

The answer, if you didn’t realize, is YES.

How Working From Home Affects my Diabetes

Diabetes is a creature of habit. It rarely appreciates disruptions in its expected routine…so when they happen, it likes to make its displeasure known.

This probably explains why I’ve dealt with a number of diabetes curve balls since I started working from home (as opposed to an office) full-time.

I’ve been working remotely, 40 hours per week, for just about a month now. This was a choice I made as I prepared to move from Massachusetts to Virginia. I like most things about my job, from the people I work with to the skills it has helped me develop. But I don’t particularly love that my job forces me to be a self-described “cubicle rat”. When I work in the office, I’m parked at my cubicle for a solid portion of the day. As a semi-fidgety person, this was a tough reality for me to swallow nearly five years ago when I started my job. However, I was able to adapt to the old ball-and-chain that is my desk, and learned to break free from it every once in awhile. Before long, I discovered that getting up every 60-90 minutes to either wander into the kitchen for a drink, walk up the stairs to another floor in the building, or in nice weather, stroll around the building in laps, were all excellent ways to cope with my desire to move as well as keep my blood sugars at bay.

So that’s close to five years of having a very specific routine that my diabetes and I were used to…no wonder it was pissed off when I changed things up.

You are a rare gem.

Working from home affects my diabetes in ways that I expected and others that caught me off guard. First, the things that didn’t surprise me: I knew that I would likely be even more sedentary at home than in an office. I’m not walking across a parking lot, up a set of stairs, and down a long hallway just to set up my desk each day. All I’m doing is walking five feet into the living room in order to power on my laptop. So there’s a lot less daily movement, and I’ve had to work hard to incorporate as much of it as possible because my diabetes responds incredibly well to exercise.

I also knew that my relationship with food would change a bit. Since I was living with my parents before the move, I was lucky enough to have 99% of my food preparations done for me by them (thank you for feeding me, Mom and Dad). Not only would I need to take care of cooking my own food in this new situation, but I would also need to become responsible for making smart choices and stocking the pantries with healthful things…because when you work from home, ALL the food is available to you. And since there aren’t any coworkers nearby me to chat with and take my mind off snack time, it’s much easier for me to just traipse through the kitchen whenever the heck I want and eat a gratuitous number of chips, crackers, cheese, and any other sort of goodies I can find. I don’t like admitting it, but I don’t always bolus for said snacks…making it that much more of a struggle for my blood sugars.

But what I didn’t know about working from home and how it might impact my diabetes is that there’s an emotional side to it that almost certainly comes into play. The first few weeks of my move were absolutely draining. I was homesick and trying to adjust to this strange, new place at the same time, and honestly, I think it was all a little too much for my diabetes to deal with at once. There were three straight days in which I had to fight hard to get my blood sugars to come down from stubborn highs, and there was another string of days in which I felt like I had to eat everything in the kitchen just to keep my numbers up. Between the numbers that my blood sugars represented and my emotions, each day felt like a seesaw and I wasn’t sure what to expect next.

What took me by surprise the most, though, about my new work arrangement was how quickly I acclimated to it. By the end of week two of working remotely, I had a routine – with a few fluctuations here and there – that I’ve since tried to stick with: waking up around 6:30, exercising, showering, getting dressed, eating breakfast, logging onto work, working for 4 hours, eating lunch, taking a break to do household chores/errands, working for another 4 hours, then logging off for the day. So far, I’ve found that following this pattern helps me move around as much as I did when I worked in the office, and it establishes a flow that my blood sugars and diabetes can follow. I’ve also, for the most part, remained mindful of the foods I eat during the working hours, after making mistakes with a bag of pretzels and banana chips in the first couple of weeks.

Even though my diabetes wasn’t happy with remote work in the beginning, I think I’ve arrived at a place in which it’s coming to terms with it…and, I daresay, warming up to the concept.

Every Last Drop

27 units. That’s exactly how many units of Humalog were left in my pod, and I had no choice but to literally throw them away. My pod was expired – it had been for 8 hours – and to my knowledge, 8 hours after a pod expires, it will cease working entirely.

I kept the pod on those 8 extra hours because I couldn’t bear the thought of wasting insulin.

IMG_2075
27 units and no choice but to throw all of them away.

It’s a strange, messed up game that I played. I was taking a bit of a risk by wearing my pod for so long after it expired. After all, it’s just a piece of technology, and it can sometimes be difficult to know whether or not it’s working properly when it’s brand new, let alone within the window of expiration. But this is the game that I have to play, along with so many other people with diabetes, because insulin is precious.

Insulin keeps us alive.

Insulin is a need, not a want.

Insulin is exorbitantly expensive, so much so that it ranks #6 on a listing of the 10 most expensive liquids in the world.

With that in mind, tell me…would you feel comfortable throwing away even one single unit of it?

One could argue that maybe I could’ve tried to extract the 27 units from the old pod and reuse it in a new one – but to me, that’s an even more dangerous game to play. I have no clue whether that’s safe, or if there’s too much risk involved with germs and cross-contamination. Maybe I’m just paranoid, but when it comes to my health, I have to be.

So as much as it pained me to be unable to use every last drop of insulin, I made the only viable choice for me and disposed of 27 units of Humalog.

27 units, 16 units, 3 unit, 1 unit…no matter what the quantity is here, every last drop of insulin is invaluable.

When will we see change? Is it really too much to ask for insulin to be affordable to all?