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.
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.
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.
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?
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?
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.
I can always count on diabetes to make life’s most joyous occasions just a bit more challenging…so I shouldn’t have been surprised when my diabetes threw several curve balls at me on my cousin’s wedding weekend.
There was the moment at the rehearsal dinner when I stood up to get something and hit my leg against a chair, literally knocking my pod off my thigh. (But I didn’t even realize it for another 20 minutes.)
There was the moment later that night, after the rehearsal dinner, that I discovered my blood sugar was high and that my mealtime dinner bolus probably was never delivered.
There was the moment the next morning that I realized my breakfast options were limited to a giant, carb-y bagel or a massive, sugary blueberry muffin.
There was the moment when I was with the bridal party – applying makeup, styling hair, and trying to calm the bride down – that it hit me that I had no idea what to do with my backpack (a.k.a., my diabetes bag) during the ceremony, as I had to be standing up there with the other bridesmaids during the vows.
There was the moment I psyched myself out big time by wondering what the hell would happen if I passed out in the middle of the ceremony in front of all of the esteemed guests.
There was the moment I went a little too overboard on drinking Prosecco at the reception…and a few more cocktails at the after party.
There was the moment I woke up the next day with a high blood sugar and hangover from hell.
Needless to say, there were quite a few diabetes “moments” over the course of an otherwise beautiful weekend. As a result of them, I’ve decided to document some wedding dos and don’ts for myself, as this won’t be the first time this year that I’m a bridesmaid in someone’s wedding. Here’s my unofficial roundup.
Do have plenty of back-up supplies. I got lucky this time around because my parents were a phone call and short car ride away from me when my pod fell off. I should’ve been carrying insulin and a spare pod on me, but at least it was within my mother’s reach at the hotel room.
Don’t sweat the small stuff. Things happen, and I’ve got to learn to accept them more quickly so I can better adapt to a situation. It took me awhile to forgive myself for the pod snafu at the rehearsal dinner, and if I hadn’t snapped out of it, then it could’ve ruined the night for me.
Do try to plan meals when possible. I knew that I should avoid a high-carb breakfast on such a busy morning, but I can’t resist a blueberry muffin, especially when it’s one of two breakfast options I had. I wish I’d thought to bring food that had accurate carb counts on it so I could’ve had more predictable blood sugars throughout the day, but I did come back down from the sugar-induced high relatively promptly.
Don’t forget that family and friends are willing to help. My “problem” with my backpack was solved by handing it off to my boyfriend about 30 minutes before the ceremony started. I didn’t miss any photo opps with the bride and bridesmaid during the hand off and I felt better knowing it was in good care.
Do remember that time flies. I had to keep myself in context; after all, I was standing up in front of the guests for less than 30 minutes. I knew there was relatively little insulin in my system and that I was starting to level out somewhere in the 100s by the time the ceremony started. The odds of me passing out were slim, and I needed to give myself that reality check.
Don’t forget to drink plenty of water. Duh, that’s drinking rule #1! I’m embarrassed to admit that I maybe had two glasses of water during the entire reception and after party. It’s not like there wasn’t water available, so I don’t know what I was thinking. But I do know that I was incredibly lucky to hold onto stable blood sugars well into the night, despite my lack of hydration.
Do have a plan for hangovers. Sometimes, they happen, and they’ve got to be dealt with swiftly. After some consultation with my mother, I set a temp basal to fight against my high blood sugar and downed glass after glass of water. By early afternoon, I was feeling much better. And even though I had a bellyache, I didn’t yak, so I suppose that’s a silver lining.
And one extra “do”…do have fun with diabetes devices! I decked out my pod in a Pump Peelz sticker that had an image of the lighthouse we were near on it. Sure, it wasn’t visible to anyone but me (and a few people I couldn’t resist showing), but it still made me feel extra special and coordinated with the wedding venue. Sometimes, its the little things in life.
So besides taking several valuable dos and don’ts away with me from this weekend, I’m also walking away with a wonderful first experience as a bridesmaid to a cousin who’s always felt more like a sister to me. When it comes down to it, my irritation with diabetes doesn’t matter – it’s the love and celebrations I felt all weekend long that do matter.
“How are you today, ma’am?” The man behind the Dunkin’ Donuts counter smiled and looked at me expectantly, as I started back at him blankly.
I wasn’t sure how to answer. My mental state wasn’t great, that was for sure. I’d just come from a visit to a walk-in clinic, where I’d had X-rays of my foot taken to see whether or not it was fractured.
The previous 24 hours had been a bit of a whirlwind. I’d worked and gone to my first-ever kickboxing class, which was an awesome experience. I’d had dinner with my partner and started playing video games soon after as a way to unwind after the long day. That’s when pain in my foot flared up, suddenly and significantly.
Could I have injured it in the kickboxing class, without even knowing it? Was I overdoing it on exercising, in general? How and why did the pain just start up like that? Almost immediately, I plopped myself down onto the couch with an ice pack and extra cushions, hoping that I could stop the pain as quickly as it started.
No such luck. I went to bed early that night, but the pain was so severe that sleep was virtually impossible. I tossed and turned for hours, wondering what the hell was going on and coming up with a plan to get it checked out A.S.A.P.
That’s how I found myself at a walk-in clinic, a little over 12 hours after I first felt the pain. I was evaluated by a nurse practitioner who told me that “the likelihood of a fracture was low” (thank goodness) and that it was “probably tendinitis.” I was given instructions to rest, ice, and elevate my foot for the weekend, and take non-steroidal anti-inflammatory drugs (otherwise known as NSAIDs, like Ibuprofen or Aspirin) as needed.
That meant hours and hours of being sedentary.
That meant no exercise of any kind – I even had to keep walking at a minimum.
That meant my spirits were crushed.
I was glad that it wasn’t worse, and proud of myself for not waiting to seek medical treatment. But that didn’t mean I was thrilled with the outcome. Basically, I had to take the wait-and-see approach. Time will tell how long the pain lasts, and I can’t stand not knowing. I also can’t stand not being able to be active. Daily exercise is a key element to maintaining good blood sugars. Sitting around idle doesn’t do my diabetes any favors, but it’s not like I had any other choice.
I left the clinic, trying to process this information. This certainly wasn’t the way I wanted to kick off the long Memorial Day weekend. It definitely could have gotten off on a better foot. (Okay, okay, I’ll stop with the puns.) I found myself at a nearby Dunkin’ Donuts minutes later. I hobbled in, hoping that an iced coffee might lift my spirits somewhat.
I blinked, bringing myself back into the moment, and smiled wryly at the Dunkin’ cashier. “I’m okay,” I said to him. It wasn’t just a response to his question, it was also a reassurance to myself. I’m okay and I will be okay. I won’t let this get me down.
I thought about how I should title this blog post many, many times. It didn’t feel right to say “5 Things I Like About Having Diabetes” or “5 Things That Make Diabetes Okay”…because I will never like having diabetes, and I will never be okay with it.
But that being said, after living with it for 21 years, there are some “perks” to it that have made it somewhat more bearable. Okay, a LOT more bearable. Besides insulin, diabetes technology, and the like, there are five things that I came up with that make diabetes suck less for me.
First, and most obviously…diabetes has brought wonderful friendships into my life. I’ve written about these friendships many times before and I’m sure I’ll continue to do so in the future, because they’re invaluable to me. I have some regrets about not realizing the importance of peer support when it comes to diabetes when I was younger, but maybe I figured it out in adulthood because some part of me knew that was when I would need it the most.
Second, diabetes has made me stronger. I won’t downplay the fact that it increases my anxiety and stress levels…but I also can’t deny that the trials and tribulations of life with type 1 diabetes has made me a tougher person.
Third, diabetes has forced me to be an obsessive planner. I do wish that I could live a bit more spontaneously sometimes, but honestly, I’m pretty proud of my ability to think ahead and plan well in advance of things. These planning skills have translated to other aspects of my life, too – I wasn’t on the party planning committee at work just for the heck of it!
Fourth, diabetes has taught me so much about nutrition. I’ve been reading nutrition labels before I could read actual books. I’ve met with nutritionists at various points in my life to learn how to eat a balanced, healthy diet that consists of the right amount of carbohydrates for me. I’ve educated myself on the power of the glycemic index and how it impacts blood sugar. Without diabetes, I’m not so certain that I’d have such a clear understanding of how different foods affect my entire body. I’m grateful to know so much about nutrition, because I think it makes me a healthier person, overall.
And fifth, diabetes has lead me to several interesting (and in some cases, compensated) research opportunities. Yes, you’ve read that correctly – my diabetes has allowed me to be a research study participant in a handful of studies and I’ve gotten paid for my involvement. The amounts have varied over the years – anything from a $5 Amazon gift card to a $200 stipend – but it’s not just getting paid that makes research participation worth it to me. It’s also knowing that I could be making a difference to the larger diabetes community. For instance, offering detailed feedback on a diabetes device or product might help make it better in the future, and if that means I spend an hour on the phone answering questions, then of course I’ll do it.
In times of diabetes hardship, it’s important for me to remember these five things. Diabetes was a shit card in life that I was dealt, but it’s not the worst thing that could happen to me. Reminding myself of these bright spots help to make life with diabetes a little bit better.
Before I jump into this post, let me make this unequivocally clear: The DOC (Diabetes Online Community) has been an incredible source of support, advice, and education to me ever since I discovered it (roughly seven or eight years ago). This post isn’t necessarily about the DOC; rather, it was inspired by a recent experience I had with a totally different online community. But what I’m about to say here can be applied to just about any kind of virtual support group in existence…
In addition to the DOC, I consider myself a member of a few other online communities. One of them is focused on fitness. (I’m not going to specifically name the group here, mainly because I’d like to maintain its privacy as well as the privacy of its members.)
Anyways, said group was formed to provide members with a place to post about their respective fitness journeys. Members are encouraged to post daily about their workout routines, nutrition plans, and any emotions that might arise as they work toward building a healthy lifestyle. It’s common for members to interact with one another and show support when someone is struggling, as well as applaud victories big and small as they’re met. Unsurprisingly, negativity and criticism aren’t welcome in this group, as it can be detrimental to the goals that each member has for himself/herself.
In keeping with the spirit of the group, I posted a photo a few weeks back of myself (making a grumpy face) after a particularly challenging cardio workout session. In the caption, I wrote: “Excuse my pissed off expression…I had to cut cardio fix short because my blood sugar was getting too low. Only worked out for about 20 minutes this morning. I really wanted the full one cuz I treated myself with food just a tad too much yesterday…but I don’t totally regret it because it reminded me that I just don’t feel good when I snack unnecessarily. I’m always struggling to remember to only eat when I’m hungry or if my blood sugar is low, not because I’m bored or emotional. I know one day I’ll fully accept this and practice it!”
I wasn’t seeking sympathy or anything, I was just being honest with the other members of the group and channeling a bit of my frustration. Regardless, a few people did comment on the post with some reassuring words, like “you’ve got this”, “thank you for sharing”, and “one day at a time”, which I appreciated.
But what I did not appreciate was the comment thread that followed and involved myself and two other group members (my thoughts as I initially responded to this chain are denoted by asterisks):
Group Member #1: Oh no, be careful! Do u usually run low?
Me *Not wanting to dive into a long explanation*: I’m pretty well controlled for the most part, but exercise can make me go low sometimes!
Group Member #1: do u have diabetes?
Me: yes, type 1 diabetes for 21 years now
Group Member #1: oh wow! Be careful!! Do u carry glucose tabs with you?
Me *Rolling my eyes as I respond, and adding a “haha” to keep it light*: of course! Haha I’ve had T1D for a very long time so managing it is second nature.
Group Member #1: okay good! Just making sure. Sorry, this was the pharmacist in me asking (an annoyingly cute monkey-with-hands-over-eyes emojis PLUS smiley face emoji followed this comment)
Group Member #2: The nurse in me wondered the same. 🙂
Group Member #1, responding to Group Member #2: haha! (followed by a stupid heart emoji)
What exactly is my issue with this thread? It starts with the “be careful”. It was probably an innocuous comment on the poster’s end, but I thought that me telling her that I’ve had diabetes for 21 years might signal that I know a thing or two when it comes to managing it. It also mildly irked me that she was qualifying her comments to me by saying that she was a pharmacist. That’s great and all, but that doesn’t make her an expert by any stretch of the imagination on diabetes…same thing to the girl who also chimed in by saying she was a nurse.
Now, you might be thinking that I’m overreacting to this whole thing – and part of me agrees, I’m sure that both girls just had pure intentions and wanted to offer support in their own ways – but if that’s the case, then this is a perfect example of how things can get misconstrued in an online setting. My interpretation of this thread is that both girls were trying to tell me that their expertise in their respective fields meant that they knew a good bit about diabetes, and rather than come off as supportive, the comments felt like show-offish (like, oh, look at me and how much I know!) and as if they thought I couldn’t take proper care of myself. Again, my interpretation may or may not be true, but it’s fact that we all need to be careful when choosing our words in situations like this. Even better, when something isn’t totally clear, we can choose to say nothing rather than chime in with a comment that might come off wrong or sounds misguided.
With that in mind, I now get why some people say that online support just isn’t for them. Personally, though I appreciate and like being part of online communities, this experience did teach me a lesson about being careful with my interactions in these spaces, and that I should always try to remember…it’s impossible to gauge tone/emotion in the comments section, and coming across as a know-it-all isn’t a good look on anyone.