Diaversary, henna, and pre-bolusing

Today is my diaversary. Today marks 17 years since my diagnosis. Seventeen years since I went in for my 12 year check-up, symptom free, seemingly healthy, and got the news that would forever change my life. I remember my diagnosis, the flood of information and emotions. I also remember the doctors saying, they’ll probably have a cure in 10-15 years from now. Seventeen years later, there is no cure. But there have been many improvements in the management of type 1 diabetes.

In my 17th year with diabetes, I am eagerly awaiting the most advanced insulin pump to date. It has the ability to self-adjust insulin automatically based on your blood sugar number, a feature that has the potential to be incredibly helpful to keep blood sugars in range. It’s not a cure, but it’s a big step forward towards a completely closed loop system.

But there have definitely been hurdles and setbacks on the way. And while talking to a diabetes educator about this new insulin pump, I found out a crucial piece of information about how the auto basal feature works. She said, in order for that new feature to work, you have to pre-bolus for your meals. That means giving your insulin 10-15 minutes before you eat. Otherwise, your blood sugar could rise too rapidly and the pump will kick you out of that feature. For most people, this probably isn’t a big deal, after all, you’re always supposed to be pre-bolusing your meals ideally. But for me, it’s been 17 years of NOT pre-bolusing.

So I here I am, with a few weeks to break a habit that is 17 years in the making. It’s not that I don’t bolus, I usually end up giving it half way through a meal or after I finish. But I’ve waited so long for this pump, I want to be able to successfully use the new feature. So how do you make yourself remember to do something? Well, I’ve been trying a few things.

  1. I’ve been telling people around me to remind me to prebolus. I want the help, I want people to bug me. I need the reminders. However, I’m finding that most people I’m with also forget so it hasn’t been that helpful.
  2. My mom tried to get me to associate eating with a small meditation or thanks before I eat and then associate that with bolusing. It’s a great idea, except it’s just another thing to remember, so that hasn’t been working either.
  3. Someone suggested setting an alarm. I do use alarms, however, I don’t eat at consistent times always so the alarm wouldn’t be helpful.

hennaI was stumped. Until about a week ago. I was at an art fair with my family and there was a booth with 2 women doing henna tattoos. I love the intricacy of the designs and got one on my arm. Henna tattoos can last anywhere from 1-2 weeks. I loved looking at it on my arm throughout the day. And that’s when it hit me! What about a visual reminder to prebolus? What if I write it with henna on my hand, so then I’ll see it when I’m about to eat and remember to give insulin?

bolus

So that’s exactly what I did. I had my sister write “BOLUS” on¬†the thumb of my dominant hand in henna. You definitely can’t miss it, I’ve even had strangers ask me what bolus means. Is it working? Ehh, kind of! About half the time I remember to prebolus, and the other half, I’ve at least remembered halfway through a meal and not after I’m done. Small steps. And the more I do it, I know it will eventually become a habit.

Seventeen years later and I’m writing words on my hand so I don’t forget. Yes, I wrote 17 not 70, although maybe this will be a trick I take into my old age ūüėČ

 

You put the “um” in “numbers”

“What do the numbers say?”

Numbers are often seen as this objective piece of data. And because they are objective, they cannot lie, right? We might not always like what they tell us, and they don’t always tell the complete story, but they’re often hard to argue with. How’s my blog doing? Well let me check the analytics and number of viewers. How’s my health doing? Well let me check my blood work: my blood pressure, my cholesterol numbers, my A1c. Success criteria is often operationalized in numbers. Who won the race? Let’s check the times. Who won the game? Let’s check the score.

You learn to trust the numbers. And while you can interpret the numbers differently, put them into context, explain the variance or trends with outside information and external variables, the numbers are what they are.

You start to crave the numbers. If some numbers are good, more must be better. I recently switched to a smart scale. I wasn’t just content with knowing my weight, I wanted to know my body fat percentage and my muscle mass percentage too. More numbers could help elucidate what’s really going on in my body and alleviate any uncertainty. If I’m working out more, but I’m gaining weight, I would feel much better knowing the weight was coming from more muscle mass and not body fat.

You rely on the numbers. They show your progress. They show your weaknesses and your strengths. The numbers are your guideposts.

So imagine how you’d feel if those numbers fail you. When all of the sudden, they can’t be trusted. And instead of helping you, they lead you astray.

Lost? Frustrated? Angry? Disappointed?

That’s how I felt as I returned home from my 3 month endo appointment this week. In the past 3 months I’ve had one major change, I switched insulin pumps and continuous glucose monitors. I was having so many issues with the sensor leading up to the appointment. It would suddenly stop working after only 1 to 2 days, it was inaccurate compared to my finger tests, the trending arrows were completely misleading. I told my doctor these problems, but I was still optimistic. After all, I had started eating healthier, been more consistent with my metformin to help with blood sugar spikes, I didn’t feel like my A1c should have been much different from 3 months earlier. But I was wrong. Those inaccurate numbers had contributed to my A1c going up .6 of a point. This may not seem like much, but when you are trying to get below a certain number and are at the lower end, to suddenly be back at the higher end is very discouraging.

numbersAll day I alternated between being livid and just feeling sad. I felt let down by the numbers I rely on every minute of the day to be healthy. By the end of the day, I made the decision to switch back to my old, reliable sensor. Enough is enough. My health shouldn’t be made worse by the devices that are meant to improve it.

Numbers are complicated. So is having diabetes. And that means being critical of the numbers, always. Because what is meant to be helping you could actually be making things worse if you aren’t careful.

 

 

 

Fictional thriller meets T1D

Although it sometimes feels like it, my life does not in fact revolve around my diabetes. Like I’ve always said, it’s part of who I am, ¬†but it does not define me. There’s so much more to me and my life. I feel like often when type 1 diabetes is depicted on TV shows, movies, or in books, diabetes is either there to get a laugh or is central to the plot of the story. It’s rare to find a character who has type 1 diabetes, but there’s more to their story.

That’s why I was so excited to read, The Freedom Broker by K.J. Howe. I was contacted by the author’s team and sent a copy. The book is a fictional thriller about Thea Paris, a kidnap and ransom specialist. Her job sends her and her black-ops team on highly sensitive rescue missions to political hot spots around the world. When her own father, an oil magnate is kidnapped, she throws herself in the most urgent and challenging rescue mission of her life. Exciting right? And Thea has type 1 diabetes! The author’s own grandfather had type 1 diabetes, and watching him manage his diabetes is what inspired her to have her main character have diabetes too.

What I enjoyed most about this book is how Thea’s diabetes was depicted. This badass woman would be about to helicopter into a dangerous location to attempt to rescue a hostage and would first check her blood sugar levels on her smartphone to make sure her numbers were in range. Her diabetes was part of the story, but it wasn’t central to it. And I was really impressed with the accuracy of the portrayal of her diabetes. Hyped up on all the adrenaline from a mission, I found myself thinking, “her blood sugar would for sure go high!”, and sure enough, they acknowledged that it was. And when a downed plane explodes and leaves them stranded in a dessert, both my thought and Thea’s was how she needed to get more insulin since she was only equipped with 2 days worth and a couple protein bars stashed in her pockets. Which brings up another point that this book covered really well, always being prepared.

I was definitely interested to find out who¬†the kidnapper was and what their motive was. But more than that, it was a nice change to read a story about a strong female who doesn’t let her diabetes slow her down. Even if it is a fictional story, that message is still powerful, relatable, and true.

Dblog Week 2017 Day 5- More than Diabetes

I’ve always liked to exercise, and over the years I’ve found various different ways to stay active: playing tennis, going on bike rides, spinning classes, bootcamp, zumba, online workout videos, the list goes on. The key is to find something that you enjoy doing so that exercise is something you look forward to instead of feeling like you have to force yourself to do it.

A lot of my workouts I used to do on my own or in my apartment, but when I started working from home full time, I realized just how important it is for me to get out of the apartment and be around other people. And since my schedule usually allows for it, I can do my workouts over lunch or in the morning, instead of after work.

I have some friends that were taking barre classes and invited me to try out a class with them. I was pretty skeptical- I’m not good at dance or ballet, I’m not very flexible, and I’m used to fast- paced cardio workouts. A barre class just didn’t seem like it would be a good fit.

Boy was I wrong. The strength-based class was incredibly challenging and was way closer to Pilates than ballet. My legs shook, my muscles completely fatigued, my heart rate went up and I was sweating. With the upbeat music, the encouraging and friendly instructors, and the fact that every class follows the same structure but with different, challenging moves every time, I was hooked!

3462FF48-7909-4511-B2C6-E65CBDB3D197I’ve been taking classes for about 6 months now, last month completing my 100th class, my first major Pure Barre milestone. I’m happy to have found a fitness class that I look forward to going to and a community that I’m proud to be a part of.

And while I’ve had some trouble regulating my blood sugars with some of my other workouts, I’m able to keep my pump on during the class and besides a few lows here and there, my blood sugar stays pretty steady throughout.

So while there are many other aspects of my life besides my diabetes (my love of brunch, traveling, musicals, dog fostering, to name a few) exercise is definitely a big one and I know something that will continue to be a lifelong journey.

 

Dblog Week 2017 Day 4- What Brings Me Down

Diabetes Blog Week

What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

Like most things in life, I think it’s pretty difficult to completely separate the emotions from an event. Pretty much everything about dealing with diabetes is emotional, just to varying degrees. And those emotions not only change over time, but also day to day, even hour to hour. When I was first diagnosed, poking my finger to check my blood sugar was the most agonizing process, there were tears and tantrums. Now I don’t even think twice. Some days I don’t even bat an eyelid at a high blood sugar, other days I get really upset and frustrated.

And sometimes, there are so many different emotions involved in a single event. Let’s take a look at an episode that happened last week.

Here’s what happened with all the emotion removed:

My blood sugar dropped to an objectively low number. My body experienced certain physiological symptoms for a finite amount of time. After 15 minutes, my body returned to normal functioning.

Now let’s add the emotion back in:

It was the guy I’ve been dating’s birthday. We were hanging out in his apartment after a nice celebratory night out when I started to feel low. I ate some fruit snacks. But 10 minutes later I wasn’t feeling any better, in fact I was feeling worse. I checked my blood sugar, 33. I stared at the number. “Uh oh. Not good. Not good. This is not good.” The low seemed to suddenly hit me full force. I got off the couch and laid flat on my stomach on the floor. For some reason I find the hard ground comforting during extreme lows. Looking back, I realize this was probably a very strange and maybe slightly alarming action for someone to witness who has never been around someone with a very low blood sugar before.

“What do you need?” The concern was clear in his voice.

“Churro.”

Image result for frita batido churroWe had stopped at a local restaurant that gives you a free churro on your birthday and had saved it for later. Typically I use fruit snacks to treat my lows, but in this low stupor, I clearly had one thing on my mind.

Churro in hand, he got down on the floor next to me, holding it as I took greedy bites. I remember mumbling about how good it tasted, even cold. “Stop talking, keep eating.” Gladly. At some point, I remember saying “I’m not going to pass out, but if I do, call 911.”

As I laid there waiting for the churro to work its magic, the emotions hit. Here we were trying to have a nice celebratory birthday evening and I probably had just scared the shit out of this poor guy. “I’m really sorry.” I was. This wasn’t¬†how I wanted to be spending his birthday, or really any day for that matter. Then the insecurities. What if I scared him off, what if he decides he doesn’t want to deal with this? Or me? Then the frustration of just having such a bad low and feeling truly awful and wanting to feel better already. Then the gratitude of realizing I’m with someone who will get down on the floor next to me and hold me during my lows.

After 15 minutes, the low fog began to fade away and I started to feel better. And the night went on, life goes on.

The version of this story with no emotions is so much simpler and straightforward and yes, sometimes I do wish I could remove the emotions from managing my diabetes. But the emotions also serve a purpose. They remind us what’s important, they spur us to take action, and they can bring us closer to those around us.

 

Read more posts on this topic from other diabetes bloggers here.

DBlog Week 2017 Day 3- The Blame Game

Diabetes Blog Week

I had an interesting experience a couple weeks ago while flying to Las Vegas. I was stuck in a window seat, separated from my friend a few rows up. My CGM vibrated to let me know that it needed to be calibrated so I took out my glucose meter to test my finger. The man sitting next to me started to laugh. Not the reaction I was expecting.

I gave him a perplexed look.

“I was just about to do the same thing.”

Ohhh a fellow T1D! What a coincidence! It’s always nice¬†to run into other type 1 diabetics in the wild. We started chatting, he told me he’s had type 1 for 26 years and no complications. We talked about his choice not to use a pump, how he exercises every day to help manage his blood sugar, and how he watches what he eats. But then the conversation took an interesting turn.

He started telling me about a coworker of his that also had type 1 and didn’t take care of himself and ended up passing away. And then another story about a patient at the office where he works who also was a type 1 with some pretty bad complications that he watched quickly progress and become worse and worse. I hear these stories, but not usually from another T1D. Forgive me, but being stuck on an airplane, I really don’t want to hear sad stories of people with type 1, I know what can happen. What started as a nice coincidence, started to feel more like a warning/lecture. When the flight attendant came around asking if we wanted pretzels, peanuts or cookies, I opted for the peanuts which I wanted, but wondered what my seat mate would have thought about me if I had chosen¬†the cookies.

People manage their diabetes differently. I could tell that this man was very careful about what he eats (he didn’t touch the cookies that came with his airplane lunch combo), what he drinks, his exercise, and probably many other aspects of his diabetes and general lifestyle. And it works for him which is great, he’s healthy and seemingly happy. But when he talked to me, there was this inherent judgement in his voice and stories, he seemed to say, you should be doing this too if you don’t want to end up like the people in the stories. And sure, I know I could be better about certain aspects of my diabetes management and what I eat, but it’s my life and my decisions. I’m sitting here trying to think of what empowering thing I could have said back to him. But really, I shouldn’t even have to sit there and defend my choices and how I live my life with diabetes. Honestly, what I should have done was said “I’m sorry to hear that. If you don’t mind, I’d like to finish watching my movie” put my headphones back in, and enjoyed the rest of my flight.

DBlog Week 2017 Day 2- The Cost of Chronic Illness

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?

All I can write for this topic is how fortunate and grateful I am that I have insurance that is willing to cover the supplies that I need and that I have a job that let’s me afford the high deductibles that I pay every year. Between the sensors, test strips, insulin, infusion sets and tubing, doctor visits, fruit snacks to treat the lows, diabetes costs thousands of dollars a year, even with good insurance.

It breaks my heart every time I hear that someone doesn’t have a CGM because their insurance won’t cover it and it’s too expensive. Or the horror stories of people not being able to afford the insulin they need to live. The devices and medication that we need to care for ourselves and stay alive should be accessible and affordable for all. End of story.

 

DBlog Week 2017 Day 1- Diabetes and the Unexpected

Diabetes Blog Week

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens?


You’ll never be 100% prepared for what the diabetic life will throw at you, but you can definitely try. Here are 3 tips that have served me well thus far.

Fill every pocket.

Maybe not literally, but no matter where I go, I always have the essentials with me. And depending on how far I’m going, and how long I’ll be gone, I fall into different categories of what I take with me. Let’s use a visual:

circles.png

That’s me in the middle there and everything in that purple circle are things that I always have on me, no matter if I am just stepping outside to throw away the trash. Since my pump is literally connected to me and my CGM is built into the pump, they’re always with me. I have a medical alert tag attached to my watch that I never take off, and I always make sure I have at least one pack of fruit snacks with me at all times in case I have to treat a low.

The second blue circle are things that are with me about 90% of the time in my purse or some other kind of small bag. Even though I might have my purse in another room for example, these items are always close by.

The third circle are items that I’d have with me either in a bigger bag like a backpack, or overnight bag, or stored in my car. They’re items that I probably won’t need on a daily basis, but I want to have with me as emergency back-up, especially if I’m going to be gone for awhile. I wouldn’t take them with me to run errands, but I would have them in a bag if I’m going on a half day kayaking trip for example.

When you’re prepared with the essentials, you’ll be more likely to handle the unexpected.

Use your support system.

Hopefully you have people in your life who love and care about you and are there to help you out in a pinch. I don’t like to rely on other people too much, but it’s good to know I can count on them if I need to. Just the other day, my blood sugar was running extra high and not coming down and I had to excuse myself from a social gathering. My friends immediately asked if I needed a ride home and if there was anything they could do or that I needed. And sometimes I end up taking them up on it. I was once driving a car full of friends to an event when my pump gave me an alert that the battery was going to die in 30 minutes and the pump would shut off. I was 30 minutes from home and 30 minutes to my destination. Luckily a friend who was meeting us offered to bring a few batteries. While I know I could have stopped at a gas station, her generosity saved us time and hassle. When you aren’t prepared for the unexpected, don’t be afraid to let others help you overcome the challenge.

Get creative.

With every pocket filled, you still might not have what you need in a specific situation. That’s when you start problem solving and get creative. I once realized I forgot to pack both my pump clip and leg strap pump holder while wearing a summer dress. Using a rubber band and hair tie, I somehow managed to secure my pump under my dress. Or while on vacation, I realized I didn’t bring extra tape for the sensor that was about to peel off. I found a first aid kit and used the band aids to hold it in place. Sometimes, you just need to think out of the box when the unexpected strikes.

The Attack

Dear customer service woman,

I should probably start with an apology. I’m sorry I got snippy and short with you on the phone, I know that you were just trying to do your job. Unfortunately you caught me at a rather inopportune time, as I was at the airport trying to figure out my seat assignment and was pretty distracted when you called. You also told me it was only going to be a couple minutes, which was not the case, so that one’s on you. So while I do apologize for my behavior, I wanted to let you know where you went wrong on this call. Very, very wrong.

You started by explaining that you are a company that works with my health insurance to connect people with chronic illnesses or traumatic health events with health coaches. You asked me if I have any conditions that would qualify. This struck me as a little odd, you’re the one who called me, you clearly know I qualify and what condition I have. But I went along with it and told you I have type 1 diabetes. You asked me how long I’ve had it. Almost 17 years. You seemed a little surprised.

Here’s where things started to go downhill.

You asked me if I do anything for it.¬†Um excuse me? What kind of question is that? I know you’re probably following a script, but if you knew anything about type 1 diabetes, you know that of course I’m doing something for it otherwise I would DIE. And how am I supposed to answer that? What do you want to know? That I’m on an insulin pump, a continuous glucose monitor, that I see my endocrinologist every 3 months, that I count carbs, that I exercise daily? Your question threw me so I asked for clarification. What do you mean?

“What do you do to attack it?”

Oh hell no. This is where you really lost me. I’m a writer, word choice matters to me. More than that, my masters is in health behavior and health education, specializing in health communication. I know how important it is to be sensitive and use appropriate language for the condition and person to whom you are talking to. What do I do to “attack” my diabetes? Here’s the problem with the word choice, attack. When you attack something, there are mainly two outcomes: victory or defeat, win or lose. An attack is a finite event with a clear result. The only time I’ve ever heard “attack” used in a medical context is with cancer cells to destroy the cells, and even then it’s not always an appropriate analogy.¬†I can’t attack my diabetes, because there is not a clear outcome. There is no cure, no victory besides feeling the best you can each day and minimizing future complications. You should know this! What you should have said is: “What steps are you taking to manage your diabetes?” because living with type 1 diabetes is an ongoing battle, not an attack. And whether you meant that sentence to be understood differently, this was my reaction and interpretation of it, and as your potential future client, my reaction matters.

With that one word, you destroyed your credibility with me. If you don’t understand what it means to live with and manage type 1 diabetes, why would I trust your health coaches?

So I told you I wasn’t interested and hung up. And you lost a potential client. I know this isn’t your fault, especially if you’re following a script. The problem goes higher than you. It goes to the people¬†who didn’t bother to do enough research on the conditions they are coaching, on the people they will be talking to, and proper training to their front line phone callers.

Programs like the one you are offering can be very helpful. I’m a huge advocate of helping people gain the skills and confidence they need to take care of themselves the best they can. Just be cognizant of the language you are using, because words are powerful and I’d hate to see you lose any more potential customers due to poor word choice.

Sincerely,

A disgruntled diabetic

 

Lessons from Levi

My foster dog Levi and I spend a lot of time together. Since I work from home, he’s constantly curled up next to me, usually sleeping while I’m working. They say that owners and their pets sometimes start to resemble one another over time. I’d definitely say that’s been true of Levi and I.

unnamed

There’s a lot we can learn from our pets. In fact, I found a great list on Huffington Post of what dogs can teach us about what matters most. They remind us to live in the moment, to not hold grudges, to be loyal and dependable, and to love unconditionally.

Yesterday though, I found myself imitating Levi in a completely different way.

It was after my bootcamp class. My blood sugar was on the rise, but this was to be expected since this particular fitness class always seems to raise my blood sugar an hour later. Anticipating this rise, I had given a few units of insulin once class ended. I ate dinner, giving another bolus. But it was as if I was delivering water instead of insulin, it wasn’t doing anything to stop my rapidly rising blood sugar! By 9:30 pm I found myself staring at a staggeringly high number, the highest I’ve seen in a very very long time. I changed my infusion set and gave a correction through an injection.

At this point in the night, I was feeling truly miserable. I was thirsty, nauseous, my body and head ached, my brain felt foggy. But it was the end of the night and I had to take Levi out before bed.

LeviDance.gifThat’s when I realized that Levi was doing exactly what I needed to be doing! Tonight, I would channel my inner dog and follow Levi’s example.

Excited to be outside, Levi started pulling me to walk faster. Alright I got it, we’ll pick up the pace! Exercise, including walking, can be beneficial in lowering blood sugar. Great thinking, Levi.

While on our walk, Levi kept stopping to sniff and pee every 10 feet. While stopping so often on a walk is annoying, frequent urination to flush out your system is important when dealing with high blood sugars or even small amounts of ketones. Smart thinking again, Levi.LeviDrink.gif

When Levi finally finished emptying his bladder and marking every pole we passed, we went back inside. Levi made a dash straight for his water dish, lapping up the entire bowl. Drinking lots of water! This can help the kidneys flush out the extra glucose in the blood. Great and important advice, Levi!

I checked my blood sugar again, finally it was coming down! The rapidly dropping arrows confirmed that I was trending in the right direction and I was starting to feel a little bit better.

With the worst behind me, I followed Levi’s lead one last time that night.

Levisleep

By 12:30 am, my blood sugar was back to normal. Thanks for all the lessons, Levi!