Tag: doc

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.

Sugar and T1D: Friends, Not Foes

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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?!

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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?

 

3 Things I Learned About T1D From my 10-Hour Road Trip

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What do you do when a road trip that’s only supposed to last 7 hours turns into a 10 hour trek?

The answer isn’t cry, or whine, or freak the eff out. The answer is to roll with the punches…because you have no other choice.

At least that’s the way I saw it when my journey from Virginia to Massachusetts dragged out from 9 A.M. to 7 P.M. a couple of Fridays ago.

As someone who loathes driving, I was dreading this trip. But I knew it was important for me to conquer a fear of long-distance driving, as well as bring my car back to Massachusetts for a cutting-it-close car inspection. Plus, driving is much cheaper than flying, and you can’t beat the convenience of loading up your car with as much crap as you need to pack.

So I made myself do it, and besides teaching myself that I can handle a longer road trip, I also learned three interesting things about my diabetes from the many hours I spent in my car:hugging the cactus - a t1d blog.png

1. My diabetes doesn’t like for me to stay idle for so long.

This trip was an excellent reminder of how much my body and my diabetes rely on me to get up and move throughout the day. Throughout the workweek, I tend to get up from my desk chair at least once every hour, if only to stretch my legs. But that frequency of movement must make a difference, because I only visited a rest stop once during the full 10 hour trip. It felt awesome to move around for a few minutes, but I was eager to get back on the road and didn’t walk much while I was at the rest stop. Now, I’m wondering if I should factor that into my next long drive, but the idea of taking too many rest stops and prolonging my travel time is not exactly favorable to me…unless it means that my diabetes is guaranteed to be better behaved.

2. My diabetes is better behaved when I eat regular meals.

I eat a lot throughout the day. Breakfast, lunch, dinner, and at least two snacks are part of my daily meal plan. I typically eat all three meals and two snacks around the same times each day, to boot, so my diabetes depends on that consistency. It’s no wonder that I was dealing with rebelliously high blood sugars for most of my drive home, because I was fueling myself with absolute garbage: chicken nuggets (and only chicken nuggets for lunch), Fritos for a snack, and a granola bar for ANOTHER snack. In hindsight, it would’ve been much easier for me to pack a healthy lunch and maybe an additional, in-case-of-emergency snack, because I could’ve had a low-carb option available to me whenever I was ready for it. Plus, chicken nuggets and Fritos are things that I rarely consume, so of course my blood sugar wasn’t loving them.

3. My diabetes HATES stress.

And my goodness, was I stressed. I hate driving, period, so I doubly hate it when it’s a long distance. And my stress was exacerbated by the fact that I had to transport 60 cupcakes, on ice, back to Massachusetts with me for a bridal shower that I was planning for my cousin. That’s quite a bit to contend with, so it makes sense that my blood sugar shot up within minutes of me hitting the road. Even though I ran temp basals and bolused somewhat aggressively, it didn’t make much of a difference in my levels. And I suppose that I was hesitant to give myself too much insulin while I was behind the wheel, because going low seemed more dangerous and difficult to contend with than going high. Truthfully, though, there’s nothing fun about high or low blood sugar. It doesn’t matter if I’m driving, sleeping, exercising, whatever – anything other than “in-range” is just a pest to me.

So now that I’m aware of these three things, what am I going to do about it? For starters, I’m definitely going to get better about planning my meals for long car trips. I’m also going to try to take it easy a little bit…I put so much pressure on myself (I’m very good at working myself up into hysterics, really). So I might try some mindfulness exercises (e.g., meditating) before the next long drive…because anything I can do to take back control of my diabetes before going on my next one will be worth it.

A1c: Keep it a Secret or Share it with the World?

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This post originally appeared on ASweetLife.org on May 12, 2015. I felt very strongly about keeping my A1c to myself four years ago. I’m still not too keen on sharing it with the world for the reasons I explain in this post, but I have been known to celebrate A1c victories on social media by posting particularly exciting results. Where do you stand on the spectrum? Keep it a secret, share it with others, or somewhere in between?

Over time, I’ve grown more comfortable with the concept of sharing as much of my diabetes story as possible. I’m open to the idea of answering questions that others may have for me, but there’s a key piece of information that I don’t think I will ever willingly share online: my hemoglobin A1c.

Some might make the assumption that this is because I feel ashamed or defeated by that number. I won’t lie, there are times in which I do get disheartened by my current A1c – particularly when I expected to hear a more favorable report from my endocrinologist.

Rather, I think the real embarrassment stems from the comparisons I make between my own A1c and the numbers reported by others. When I began blogging for ASweetLife just over two years ago, that marked the start of me exploring the world of T1D blogs. It was awesome to connect with others virtually by reading about their own personal experiences with diabetes. I admired the courage that many demonstrated by revealing some of their greatest challenges and obstacles they had overcome in their journeys. It seemed that improved A1c numbers were a common theme for nearly all of them.

HUGGING THE CACTUS - A T1D BLOG (1)
What do you do with your A1c information?

At that point, I started to compulsively compare my number to everyone else’s numbers. I seriously questioned myself and my ability to obtain a better A1c reading. I mentally berated myself for having a less-than-perfect number. The rational part of me knew that it was not wise to measure myself against others, but I just couldn’t seem to help it.

After a while, it dawned on me that the road to better A1cs had not been smooth for any of these individuals. It was marked by divots, twists, and turns along the way. As such, I wasn’t being fair to myself as I sought to see a better A1c. I know that it’s hard work and that I just need to focus on my own overall health and well-being (as opposed to that of other people) as I continue to strive for that 6.

Regardless, don’t expect to see me posting my A1c to my blog any time soon. I don’t really think I need a daily reminder out there for all to see of what my A1c was at a given moment in time. Instead, I think it’s important that I focus on what’s happening now and what I can do to help my current state of being. So for now, I’m content with keeping my A1c to myself.

A Tough Week

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It’s like you’re always stuck in second geeeear

When it hasn’t been your day, your week, your month, or even your yeeeeear!

*Ahem* Oh! Pardon me, I was just singing that line from the Friends (yes, the TV show, of course) opening credits theme song. It describes how I’ve been feeling lately – maybe not for a full year, but most certainly this week.

It all started with high blood sugars. Not just any kind of high blood sugars, but the inexplicable sort of numbers that were happening for no apparent reason. Running temp basals, bolusing, stacking, drinking tons of water, testing for ketones, increasing activity levels, and reducing food intake were all steps that I took in order to combat the highs. But still, it seemed like every time I put food into my mouth, my blood sugar would jump up way too high, even though I was aggressively administering insulin to cover it. I was taking almost double what I should’ve needed to take, with less than stellar results.

I was dumbfounded. And angry. And incredibly stressed over it.

Ah, stress…the possible culprit?

I’m still not sure, but it seems to be the likeliest possibility. I’ve been running around like a mad woman since I returned to Massachusetts for a two-week visit. I’ve been busy planning my cousin’s bridal shower, meeting up with family and friends, going into work at the office Monday-Friday, contending with other health issues (scratched corneas…don’t ask), and calling various companies for health-insurance-related issues. I’ve had little time for myself, so it really isn’t a wonder that stress could be to blame for my hyperglycemic patterns.

That, and my tendency to forget that haste makes waste. Let me present to you the following photo:

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Yep, that’s little old me at my work cubicle, pointing out my barely-hanging-on pod. In my hurry to get to work and start my day, I had removed my tote bag from its spot on my shoulder in a rush. The force from the movement peeled half of my pod up and off my arm, leaving the cannula (mercifully) still stuck under my skin. I was furious at myself because the pod was less than a day old, and I couldn’t bear the idea of tossing it with more than 100 units of precious insulin left inside it. So I did what I could to cobble it back onto the site on my arm with copious amounts of medical tape, cursing myself for being so careless and exacerbating my stress levels.

There’s a lot more I could say and explain when it comes to the level of tough this week has been, but I think it’s time to move on. Life with diabetes means good weeks and bad weeks. The good weeks are to be celebrated, whereas the bad weeks ought to be acknowledged for how physically and emotionally challenging they are, but also for the lessons to be learned from them.

With that said…

It’s been a tough week, but a new one’s right around the corner and I’m determined to make it a good one.

My Low-Carb Baking Fail

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Ever since I was old enough to be trusted in the kitchen, I’ve loved baking everything from cupcakes and cookies to cheesecakes and breads. There’s so much I enjoy about baking: measuring out ingredients so satisfyingly precisely, smelling sweet aromas waft from the oven, and naturally, sampling the tasty final products.

But this hobby of mine has been a bit hazardous at times, seeing as just about every recipe I’ve ever followed has been far from low carb. Mainly, this was due to the fact that I never really had low-carb recipes on hand; rather, I was following tried-and-true, blue-ribbon-winning recipes from my mother’s collection of cookbooks. Plus, I figured that family and friends would be more willing to try baked goods that were made from “real” ingredients, not artificial sweeteners or alternative flour mixes. There was never a reason why I wouldn’t be able to try my creations, either – that’s why I had insulin, of course.

Now that I have a kitchen of my own to experiment in, though, I find my interests turning to lower-carb cooking and baking. I don’t follow a low-carb diet, but I will occasionally cut carbs here and there to see whether my blood sugars benefit from it and to find out if my taste buds like it.

Besides my lack of experience, I was hesitant to try low-carb baking because it seems like the core ingredients needed for most recipes are so hard to find…and expensive! Coconut flour, xanthan gum, and erythritol aren’t exactly the most common items on the typical grocery store’s shelves. But thankfully, I am fairly close to an Aldi supermarket, where I’ve had incredible luck finding things that are priced significantly cheaper compared to other grocery stores. So, after a couple of slowly rotting bananas on my counter top inspired me to search for a low-carb banana bread recipe, I gathered up my low-carb baking supplies on a trip to Aldi and set about baking my first keto-friendly banana bread.

My Low-Carb Baking Fail
Maybe one day, I can make low-carb cupcakes that taste good AND are as pretty as the ones above.

It did not go as expected. I intended on baking two breads, seeing as the recipe called for one banana per loaf and I had two to be used. The actual process of making the first loaf of bread was actually very straightforward – mixing dry ingredients, then wet, then combining all of them together. The bread had to go into the oven at 350 for an hour, and when it finally was done, it looked totally normal and even tasted pretty good. The walnuts I’d mixed in added the perfect crunch and helped the banana bread taste like the “normal” kind.

So I felt fairly confident as I started to make the batter for the second loaf. The only difference this time was that I added dark chocolate chips, which I think are the perfect complement to banana bread. I even dotted the top of the bread with the chips in a pattern to add a little extra flair.

I knew something was wrong immediately upon taking the bread out of the oven one hour later. The chocolate chips I’d artfully arranged on the top had disappeared. WTF? It only got worse when I removed the loaf from the pan…because half of it stuck to it. That’s right, half of my banana bread was not salvageable, and the other half that came out was looking pretty damn ugly.

The taste? It was fine…not great, though. The chips had melted into the dough in an unappealing way. The bread itself seemed less like a banana bread and more like a weird banana-chocolate chip mush. It was definitely not the outcome I wanted. And no, I did not take a picture of the fail…I didn’t want the reminder that it was a bit of a hot mess.

Does this mean I’m done experimenting with low-carb baking? Absolutely not. I’ll take a little break from it for now and search for new, promising recipes at another time. But one thing I’ll do for sure the next go-around? I won’t get cocky and add any mix-ins…unless they’re specifically called for in the recipe instructions.

 

Navigating Health Insurance Hell

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I am one month into my new health insurance plan, and I’m more confused than ever.

I’ve sent several emails. I’ve engaged in a number of live chats. I’ve made countless calls to my insurance company, my insulin pump provider, a mail-in pharmacy service, and my CGM provider just to try and get some answers. And almost every time I hang up the phone or walk away from the chat service, I feel lost because nothing is clear to me.

Am I stupid?

Keep track of your fitness at www.reallygreatsite.com.png

I can’t be the only one who just doesn’t get how it all works…right?

Why can’t I just get definitive answers as to how much I’ll need to pay for insulin each month?

Why does my health insurance company advertise a partnership with a mail-order pharmacy that puts a cap on insulin costs…when in reality, it doesn’t (or at least, nobody has informed me that it does)?

Why am I learning, at this stage in the game, that my prescription plan isn’t integrated with my medical plan, which means that any prescriptions I fill using the mail-order service don’t qualify towards my deductible?

Why is it all so convoluted?

As mystified as I am by all of this, I’m coping with a strategy that my parents have helped me develop, which I’ll share with you: Anyone who is going through all of this right now, or anyone who is about to go through all of this, needs to remember to be their own advocate. (I’m reminding myself to do this on the daily.) Frequently, I tell myself that I have every right to make as many phone calls or contact efforts as needed until I understand the costs associated with reordering my supplies. Although it’s easy to get frustrated when a representative on the phone speeds through an explanation or provides contradictory information, it’s important to stay focused on the task at hand.

As I continue to figure all of this out, I’m going to take note of questions that crop up and have a notepad and pen in hand any time I make a call. I’m keeping track of all messages exchanged online and I’m using the next couple of weeks as my fact-gathering stage. It’s almost like I’m assembling pieces to a puzzle…a ginormous, complicated puzzle, but one that will result in a more complete picture of the cost of my prescriptions going forward.

Supporting T1D Students with my #SensorSelfie

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I’m taking a departure from a “traditional” blog post today to tell you, my dear readers, that you should consider celebrating a special holiday with me today: National Selfie Day! Before you roll your eyes at the mere idea of that, please keep reading to learn how participating will help support students with diabetes.

Dexcom has partnered with a nonprofit that is very important to me – The College Diabetes Network (CDN) – to help put some focus on the diabetes community and raise money. They’ve created the #SensorSelfie social media campaign to encourage people with diabetes to take photos of themselves proudly donning their Dexcom sensors.

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Here’s my #SensorSelfie, which wouldn’t be complete without my cactus shirt.

But what exactly do you need to do in order to take part in the campaign? There’s four simple steps to follow today, June 21st:

  1. Take a picture showing off your Dexcom sensor
  2. Post the photo to your Facebook and Instagram pages
  3. Use the hashtag #SensorSelfie and tag @Dexcom
  4. Tell ALLLLLL your diabuddies to do the same

For every post that uses #SensorSelfie today, Dexcom will donate $1 to CDN. Can you imagine how much money could be raised if you got all the T1Ds you know to participate?

If you’re looking for some more information on this social media campaign, click this link. Otherwise, what are you waiting for? Get to snapping, posting, and tagging!