Someone. Please. Carb. Count. For. Me.
BRAIN CANNOT COMPUTE! Also I’m really hoping I packed extra Humalog right about now….it certainly is the Holidays!
Today I turn 32 years old. And next week, my diabetes will clock 22 years. I’m now in a category of “more than two decades with diabetes.” And also “in my early 30s.” I can’t have a birthday or a Christmas without thinking about my diagnosis and my duration with this disease, because I was diagnosed on Christmas Eve in 1992. My birthday, Christmas, and diabetes are all intertwined. Because they all fall in December, it always feels very official when another year passes, because it’s the end of the year and a time for reflection.
This year, I landed a job at a company I’ve had a career crush on for years. It has easily been the hardest job that I’ve ever had. The hours are insane, the workload can be crushing at times, and the pressure is high. But every single day, I think about how lucky I am to be here in this exact moment in my life. I get to help other people with diabetes live better every single day, and that is the part of my job that sings to my soul. How blessed I am to have found a career where that’s possible in the day to day work I do? I find it especially poignant at this time, almost one year into my tenure with the company. Because this time last year, I was still without a job, worrying about my future, and wondering if I’d made a huge mistake moving to Portland and away from my job network in San Diego. My, what a difference a year makes.
This year was a pivotal one for my diabetes management too. After struggling for a full year to bring down the high A1c that our trip to Asia created, I settled into my comfort zone of the low sixes, only to be told that wasn’t good enough if I wanted the best possible chances for a healthy pregnancy down the road. I had been in the fives once before, and that had to have a been a bit of a fluke – an average of way to many lows. But this time, I took on the challenge and cranked up d-management. I bolused corrections for 145s and restrained myself to one glucose tablet for 72s. I cut carbs and increased my exercise. This kind of dedication is not easy and I don’t know that I’d recommend it, outside of this particular situation of wanting to have a child in the near future (still not pregnant folks, by the way….I intend to celebrate my birthday tonight-with wine!)
But when I hit that 5.9 A1c – and not because of a fluke but because of my very own hard work and dedication – that felt as good as it gets. And even though 22 years with diabetes has cracked the door open for the dreaded complications, with mild retinopathy now sitting on my health chart, I feel empowered to lean into that door harder than ever to shut down that specter of further complications as long as I can. When we accomplish something we were scared of or thought we couldn’t do with diabetes, that ramps up our Diabetes Confidence and helps us prepare for the next battle. Getting to 5.9 has shown me that what I thought was impossible is actually within my reach.
Today, while I reflect on the amazing, crazy, challenging, sometimes exhausting and sometimes utterly exhilarating year I’ve had, my accomplishments and challenges with diabetes will be there. But they will simply be one part of a wonderful year – not the centerpiece. There are too many other things to be grateful for.
Bolus – worthy is the term we usually reserve for sweets and treats that are a pain to dose for, but oh-so-worth it once in a while. And on Sunday, I had one of my best buds over for our now-annual cookie baking fiasco. We’re both decent cooks (she’s actually phenomenal – her enchiladas could make a grown man cry. I’ve literally seen it happen) but somehow, when we get to baking, things go all kinds of wrong. Gingerbread men fall apart, recipes don’t make sense, and more often than not, the best of the baked bunch ends up being the scraps of the experiments we tried but miserably failed. I’m not above frosting a Gingerbread man’s leg and calling it dessert. That happened. Cookies, I’m sure, fall onto many people’s bolus-worthy lists. But it’s more than that.
Bolus-worthy is that moment when a new Christmas tradition is born. Bolus-worthy is when you’re laughing so hard with your friend that neither of you can breathe or even remember what was so funny in the first place. Bolus-worthy is making a somewhat-decent cookie tree in honor of your late Great Aunt, who used to make a beautiful one each year. Bolus-worthy is being ok with the 194mg/dL you end up with after ingesting half a pound of cookie dough while making said tree, and actually feeling like, “hey, I managed to keep it under 200mg/dL even with all these cookies – WINNING!” Bolus-worthy is not missing a single experience in life.
Bolus-worthy is not letting diabetes stop the magic of Christmas. And we’re so lucky that we CAN decide if things are bolus-worthy to us or not in this day and age. It wasn’t that long ago that all of these foods were viewed as off-limits according to traditional “Diabetic Diets.” My how times have changed – I can watch the rise and fall of my BG on my CGM, and bolus with the touch of a few buttons to iron out the damage. Although not every food is easy for me to eat and manage, I have the confidence that I can handle it if needed.
And there’s nothing more bolus-worthy than time with the folks you love.
I explained to my endo on Friday that I feel like I’m doing everything I can to keep my BGs nice and smooth and maintain this crazy low A1c (actually that remains to be seen – getting it drawn on Wednesday!), but I told her that exasperatingly, I was still getting these odd spikes in the middle of the night, despite bolusing well for dinner and going to bed with a good BG and tweaking my basals. It wasn’t happening every night, but enough to drive me a little (ok…a lot) nuts. It just didn’t make sense, there wasn’t much of a pattern to it, but when it happened it ruined the night of sleep and usually the next day.
She asked me if I had ever heard the term gas-lighting. I had not.
She explained to me the term comes from a story from Ye Olden Days when we used gas lamps to light our homes. A man would turn down the lamps ever so slightly at night and when his wife would ask if the lights were dimmer he’d say “Why no, not at all!” leading her to believe that she was going crazy when in fact, she was being messed with.
This, she explained, is gas-lighting, and it’s something diabetes does incredibly well. It messes with you just enough so that you have to wonder if it’s the diabetes…or maybe it’s just all in your head. It’s those times when you feel like there can be no possible rational explanation for whatever nonsense diabetes has put on your plate that day….and it turns out that you’re right and there is no explanation. It’s just diabetes utterly, royally, unapologetically effing with you. I love this new term because it so perfectly describes what happens with diabetes and why the mental side of managing this disease is the crazy-making part, not the injections/bleeding/finger pokes. That stuff would be downright easy if only it worked every time, for every situation. But it doesn’t and the subtleties of this disease are where you can make yourself nuts. I’ve been getting gas-lit by diabetes for over two decades now, and it doesn’t make it any less obnoxious. I’m so glad I have a new term for the nuttiness though!
And apparently, it’s a totally acceptable medical term. Because it made it right into my chart notes, all official like. Love it.
You know what we really don’t spend any time talking about in the diabetes world? Lancing devices. I’m guessing because it feels like there’s not too many differences between them, and they’re not crazy-town expensive like test strips are, nor do they do anything as cool as our CGMs and pumps. Also, they’re kind of boring. And invoke pain. Ew.
Yet, we all use them. I calibrate my CGM twice a day with a traditional finger stick and I don’t do it with a butter knife. For the past year, I’ve been using what can only be described as the most ghetto lancing situation possible: a duct-taped, rickety old version of the Accu-Chek Multi Clik. The cap had broken (twice) but the tape held it together just fine and hey, the thing worked so whatever, right? Also, even though every single pharmacy and grocery store carried the lancets, absolutely no one had the actual lancing device. So I would always ask the pharmacist if they had one in every Target/Walgreens/Safeway/Fred Meyer/CVS I went to, but to no success.
Until finally a super-nice pharmacist must have noticed my disappointment at yet another failed mission and said “let me see if I can order it for you.”
Turns out she could, and although it seemed pretty expensive ($29.99), I really really like that lancing device. The numbers showing the depth of the lance had all rubbed off my old one, making it a creepy game of finger-poke roulette every time you wanted to change the setting. Plus the duct tape, although functional, certainly didn’t look good. So she ordered me a new one, which qualified for free shipping directly to my house (always a plus, and I feel like totally warranted on a $30 spring-loaded hunk of plastic).
And just like that, I done upgraded my finger-stick game. So fresh!
Do you guys have a favorite lancing device? Or will you use any old thang?
…I can’t with this one. Do you guys have some good captions for this? Because I’m laughing too hard to even think of something to say…..this was spotted at a well-known, heavily traveled candy store in a cute little Oregon coast town that we went to for the day. All I can say is that I’m SO GLAD I got the regular candy! This candy is JUST FOR US WITH THE ‘BETES ok? But beware the side effects.
They’re really sellin‘ it, right?
It was the fifth night in a row I’d been woken up from a high blood sugar. Although I was glad to be woken up so I had the opportunity to fix the damage, I also enjoy sleeping through the night whenever possible. Crazy, I know. I didn’t understand why it was happening and what I needed to do to fix it. In the middle of the night, in my sleepy, high BG fog, I had not bothered to make note of the time as I bolused and rolled over to try and get back to sleep. By the fifth morning as I poured an extra-large coffee into my travel mug while trying to think about how I could figure out when exactly it was happening, I realized that (duh) there was as very simple way.
I grabbed my laptop and plugged in my CGM. I pulled up a week’s worth of data and scanned the trend lines.
Ah ha! There it was: 4:30am was the go-time for a rise in BGs. All five nights had started ticking up wards between 4:20 and 4:40 or so. In order to impact a blood sugar at 4:30, I had to get more insulin on board about an hour earlier. I pulled out my pump controller and went in to edit my basal rates. I added a half unit to my rates between midnight and 3:00am.
And that night, I slept all the way through the night, no buzzing of CGMs, no dry mouth in the morning, no interruptions to my precious slumber.
There was a time where I thought I’d never download my own pump or CGM data. I had put downloading in the category of “things you do when you go see your doctor.” But when I started working in the CGM industry and showing doctors how to use and optimize the downloads in their offices, I started analyzing my own data. Seeing my trending information helps me understand if something is actually happening with a pattern or if something is just the usual “living with diabetes” BS. I love the fact that a problem I was having was solved by just taking a few moments to plug in and download.
Now that I’m a regular downloader, I don’t know how I didn’t do this before. I especially like seeing the average glucose trends and percentage of time I’m in range. When I look at my BG average over the past 30 days, I’m usually able to calculate my A1c within a tenth of a point, which means a whole lot less anxiety when I get to the doctor’s office. Downloading with some frequency has helped me feel more in control of things instead of leaving them up to only my HCP.
Do you guys download? And is it helpful? Or do you wait for the doctor to do it? And do any of you have a doctor that’s a technophobe that WON’T download data (if this is the case…it’s my personal opinion that you get a new doctor….downloads are the new log books and they gotta get with the program!)
Us folks with diabetes are warriors. We battle every day to make sure we stay alive, and our bodies show the wear and tear of this war. But just like other scars, there is a reason to be proud of these battle wounds: they show how hard we have fought to thrive with diabetes. When Kat Reed and Tara Layman reached out to me to say “We want to show people that Type 1 bodies living with diabetes are diverse, beautiful, capable, and embraced,” I could not have agreed more.
And then she told me these bodies would be nekkid.
Yes – nude. Kat Reed, a healthcare professional and Tara Layman are both Type 1s who wanted to showcase the bravery and courage it takes to thrive with Type 1 in a way that had never been seen. They decided to create a calendar of tasteful – and poignant – photographs of fellow Type 1s in the buff as a way to celebrate our bodies. Their goal – to show how beautiful and capable we are as people with diabetes – is brilliantly portrayed in their 2015 T1D Exposed Calendar. 12 months of brave, beautiful, and bare Type 1s saying that their body, and all its scars, sites, calluses and bumps is amazing. Because they are thriving with T1D, and not afraid to show it! I’m honored to have Kat and Tara interviewed on the blog here today. Check out the gorgeous “teaser” portraits below! And for the full Monty, get your own 2015 calendar here.
Let’s cut to the chase: a calendar can be done clothed, showcasing pumps or CGMs. Why go naked? How does this change the statement you are making?
Years ago, Tara was working on her thesis portrait project of people living with diabetes. Kat joked about using a nude diabetes calendar to raise money. We kept joking about it. Then we started actually talking about it. Then we started to think about how powerful it could be to show all the ways diabetes affects the body and how people living with type one have to embrace the many gadgets and changes to manage it. It’s difficult to have diabetes and not have some sort of body issues. Your life revolves around balancing food, insulin, exercise and many other factors. Bodies develop bruises and scar tissue from thousands of injections, pump sites, and continuous glucose monitors. Fingers callous from years of blood glucose checking. Diabetes can also inspire people to take better care of themselves in incredible ways. People may decide to be more active or eat healthier as they become more in tune with their bodies. Regardless of the challenges, people living with T1D have able, working bodies. Gratitude is another side effect of type one; without the discovery and availability of insulin, none of the bodies featured in this calendar would have survived long after diagnosis. After we saw the empowering potential that this project could have for the T1D community, we were hooked. This project is not just a fundraiser, it’s about body acceptance and promoting awareness and understanding life with type one. It’s about loving yourself and appreciating the extra years of life we have been given via access to insulin and technology. With clothes on, we can cover up the parts of us that have been touched by diabetes. One of our participants, Marit, shared she feels like “diabetes is such an ‘invisible’ disease, and as diabetics, our bodies go through so much.” We love this chance to visibly celebrate what our bodies do for us every day along with the technology and changes that make our lives possible.
How did you select your models? And did you have to convince them to take it off or were they game?
First we reached out to friends that have heard us talk about it the last few years… “Remember that hilarious idea for a nude diabetes fundraising calendar we had? I think we are going to do it…” It seemed a lot of people were skeptical at first, and there were people that wanted to participate, but said they felt too embarrassed or scared, which is completely understandable. It’s a very personal choice, and even some people that willingly chose to participate had a difficult time actually shedding their clothes and shedding the shame when it was time to get in front of the camera. We feel so grateful to the participants that were brave enough to share themselves with us and the T1D community this first year. Now that the project is a bit more established, and people know they can take it seriously, we’ve already received lots of inquiries about how to be a part of 2016’s calendar!
Kat, you are a healthcare professional with Type 1 and Tara is a photographer living with Type 1. Outside of the calendar, have your professions been shaped by living with diabetes? In what way has having diabetes influenced your work?
Tara: Aside from the hours of every day that I think about my health, diabetes has given me a sense of mortality. A sense of live exactly how you want to be living right in this moment. That influences my photography in the way that this moment is fleeting and I can capture it with a photograph. I can freeze a moment in time and create something that it essentially immortal. Diabetes reminds me of how we have this one life and that we should embrace the chances we are given every day.
You mentioned that our bodies tell the story of our journey with diabetes. What was one model’s mark on their body that told you a story that stuck with you?
One of our participants shared that she battled with an eating disorder for years, and not until a very high A1C shocked her did she realize to what degree it was affecting her health. In her words, “I was making myself sick, and that needed to change because I wasn’t willing to risk my health any longer for a flat chest and thigh gap. This particular subject (body image/acceptance with T1D) is very close to my heart, and really why I jumped at the chance to be a part of the project. This isn’t to say I don’t have days where things feel uncomfortable. But that’s all it is, and the discomfort will pass, especially because I have an amazing support system. I’ve found a lot of love and power in just owning what’s here and what’s real about me. I stopped pining over perfection and found something better– happiness in my health, which is something I’m so grateful for now. The most important thing that diabetes has taught me is that THIS body is a really great body to be in, and I am more than happy to flash a little booty so that feeling may reach someone else.”
What’s the single biggest stereotype that you think people believe about living with Type 1 diabetes?
That we caused it. This autoimmune disease cannot be prevented. You cannot get type 1 from eating too much sugar. Type 1 affects all shapes, sizes, gender, and ethnicities.
If people with diabetes only take away one message from your calendar, what would you want that to be?
You get one wild and precious life. You get one body. Regardless of any changes you may experience from diabetes or any other chronic illness, embrace this life and be good to yourself.
Thank you Tara and Kat – please support their project by visiting http://www.T1DExposed.org and getting your very own 2015 calendar!
It was a Friday night and I’m in a crowded bar full hipsters swaying to the bass-heavy, DJ-delivered beats. My husband and I have popped in to a favorite haunt for a night cap and some people-watching. We had walked there from dinner – only a short 10 minutes – but at a brisk pace to fight the cold Portland evening. The walk, plus still-active dinner bolus insulin had kicked my CGM arrow downward, and before I laid my lips on my no-carb vodka soda, I’d need a boost in the BG department.
My husband and I were seated right up against the bar, and I caught the eye of the tattoo-laden, low-cap-wearing, pierced-lip bartender in front of me. Knowing he was slammed, I decided to pull the diabetes card.
“Hey man – sorry but I need a regular Coca-Cola, no ice please. Diabetes – low blood sugar!” I shouted over the din.
His look changed from annoyed to slight concern.
“Do you want juice instead? I have orange and I have grapefruit?”
Why yes, I did want juice instead but hadn’t ordered it because a Coke seemed easier. How did he know that?
“Um, awesome. I’ll take a grapefruit juice!”
He poured a medium-sized glass full of juice and handed it over.
“What do I owe you?” I asked.
“Nothin’ no worries!” he replied.
I had to ask.
“Do you have a friend with diabetes?” I queried.
“Yup, my best buddy is a Type 1, I’ve been on orange juice duty many times!” he replied with a grin.
“Ah ha, I knew it! You get it. Thanks for hooking me up!” I told him, leaving a few dollars for a tip.
“My pleasure,” he said before scooting off to fill the next drink order.
Our Diabuddies are everywhere. They are the people affectionately known as Type 3s – these are the people who love and care for the people with diabetes in their life unconditionally and without judgement. They are on orange juice duty 365 days out of the year. They are also woken up at night by your CGM and a scary low. They are cringing when that pump site doesn’t go in easy. They are there for us even when we don’t expect it or think we need it. Type 3s are a part of what makes this journey possible. Diabetes Awareness Month should include a special thanks to all of you out there who help us live better with this disease. So – from the bottom of my heart – THANK YOU for your support. We couldn’t do it – and certainly couldn’t enjoy our cocktails and hipster-watching – without you!
Until I realized they are so TOTALLY USEFUL for finger sticks on a cold Portland day.
Function and fashion right there ladies and gentlemen. I’m pretty much a style icon these days. Like how I matched the red blood to the red gloves? See what I did there? ICON.