A few weeks ago I got sick with Influenza A. Apparently I haven’t had the real flu since middle school. How’s that for staying healthy? I get the flu shot every year as recommended for diabetics and I’ve been able to avoid great illness… until 2021… which saw my return to a classroom size larger than one. Let’s just say that I witnessed a LOT of snotty noses at school. I’d often ask a 2nd grader if they’d like to go blow their nose and the answer was usually, “Nah.” I’d sit pretty close to 1st graders as they practiced reading and, despite my mask, I knew whatever was virally floating around their own homes was also floating around my office. Towards the end of the semester I got lax with masking. And then… hello, flu.

I have a wonderful team of people around me urging me to rest and push fluids while sick. So grateful for them. But I had forgotten what it’s like to be sick when you have diabetes.

KETONES.

Damn those ketones. I’m no scientist, but I do know that illness can stress a body with Type 1 diabetes, which then produces ketones. You ended up with too many ketones in your blood and you can go into ketoacidosis—your blood is literally too acidic.  

So to review: when a person with diabetes gets sick they can’t simply sleep and wake up and drowsily drink Gatorade until they pass out again. That’d be too easy. There’s a lot of monitoring that needs to happen to avoid diabetic keto acidosis (DKA). 

I feel like Influenza A was a timely reminder for me that I cannot mess around with not masking right now. Much of our population can get sick and tough it out at home. Meanwhile I’ve got that little thing called ketones that can swoop in and kill me if not handled immediately. 

Our hospitals are full. They’re so full that people who need quick care may not receive it. On a good day when I visit a hospital it will involve entrusting my care—my very specific and detailed diabetes regimen—to a team of doctors and nurses who know far less about my situation than I do. Let’s just say that I do everything possible to avoid visiting hospitals. 

At this point in the pandemic, with omicron knocking down people left and right, I have to stay vigilant. 

(You can see how easy it is to be anxious! Working hard on that, too.)

I don’t have a political dog in the fight right now. The election from November sapped me of any energy I have left for such nonsense. I care but I just don’t care as intensely as I did prior to Biden unseating Trump as the leader of our nation.

I say that I don’t have a dog in the fight because the fight is ongoing in my city and try as I might to understand the perspective of the “other” side, I cannot. 

Daily, I put my head down and do a whole lot of garbage that a whole lot of people don’t have to do. I normally do not complain about it and I also don’t give much thought to the fact that I’m kind of a weirdo in all I have to do to keep my body working smoothly.

So forgive me for a moment while I complain loudly.

Today I’m just all out of grace for those with normal, functioning bodies. (Don’t worry, the grace will come back after I rid myself of the venom.) At the start of Covid I figured that everyone had someone in their lives to be careful about and for… Your grandma is elderly so you’re careful for her. Your aunt had breast cancer last year so you’re careful for her. Your brother has type 2 diabetes so you’re careful for him. Your child has asthma so you’re careful for him.

And then I, gratefully by the way, lived through months of this swirly, confusing, unknown time of Covid-19 sweeping the entire globe and I began to notice that—wait a sec—not everyone is being careful. I have tried to understand the reasons why, but I have yet to really figure it out. Am I asking for a statewide mask mandate? Nope. I think it would be smart, but then again, no dog, remember? Do I think we should lockdown everything and ignore the pain of small businesses? Nope. Absolutely not. Maybe shutting down is the right way to go, but as for me, I’m doing everything in my power to support local business owners. We tip well. We thank them. We patronize their businesses, masked and distanced, happily giving our money to places that might be struggling. We share their names broadly on social media.

No, what I’m annoyed with is how very easy it is for the physically blessed among us to say, “just stay home if you’re not healthy.” I’m over it. 

Just. over. it.

I’m beyond exhausted dealing with the body the good Lord has given me—which functions and dysfunctions in a variety of ways—and then I have this? My neighbors and friends saying that they are fine and they will continue to enjoy their liberties, thankyouverymuch? It’s a giant “screw you” from those who are already doing well and can’t be bothered with the hurting, tired, weak, chronically beleaguered among them.

The truth is that the healthy and young among us can get sick and it’s no thang. Odds are in their favor. Despite the growing death count of Americans, I still gather this feeling of “it hasn’t affected me, so I don’t give a damn.” 

I’m over it. 

What is your life if you really don’t care about others? What are you living for? If your personal liberty is the most important thing in your life I believe you need to take stock of your blessings. If you feel like your thoughts are the wisest and your family is the best, if you can still run and play and all your organs are functioning perfectly, if you have no reason to fear Covid-19, then bully for you.

Your grandma might feel differently about things.

Your neighbor might feel differently about things.

I feel differently about this thing.

I have stupid type 1 diabetes and stupid rheumatoid arthritis and a ridiculously extroverted personality and a little bit of a fighting spirit and a lot of seasonal affective disorder and while I am mentally ready to get past this pandemic already, I have to pay attention.

I cannot hang out with you.

I will not eat in a restaurant.

I will not go to church where people are singing—even masked.

I did not see loved ones for Thanksgiving and will miss them on my birthday.

So whatever you think about politics and viruses and conspiracy theories and small businesses, know that people like me are listening to everything you say and we are tired. 

Have an opinion, sure. But also have some compassion.

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Edited on 12/7 to add that while I am still worshipping with the saints in my basement each week, singing mightily from home, I am grateful that others can gather together. This is what I feel I need to do to stay healthy. I have no desire to make decisions for everyone else! I want restaurants to thrive. I want people to worship. I want life to go on as best as it possibly can and I recognize that each family has to make their own calls. Besides masking and distancing to keep others healthy, I think there’s a lot of gray room for decision-making. Again, I’m not in a position to decide what’s best for everyone. I’m happily not in charge of such things.

The clock silently slipped past midnight and revealed a new date on my phone as I caught up on social media before falling asleep. November 14, it read, and I felt the time shift from 25 years as a type 1 diabetic to 26. Twenty-six. Twenty-six years ago I was the same age that my daughter is now. Sixteen. Junior year at Southeast High School. I was doing exactly what I wanted to be doing: singing, acting, joining clubs, spending time with friends, taking challenging courses, and plotting an accolades list that would get me into the college of my choosing. At the time I felt like type 1 diabetes destroyed my world. And to be fair, it did for awhile. I traded a week of school just prior to Thanksgiving break for a week at the hospital, learning about syringes and counting carbs and low blood sugar reactions and the way high blood sugars would cause dramatic complications. I cried a lot. I mean, a lot a lot. Diabetes was not on my to-do list. Back in school I felt like a teetering toddler, getting my bearings and figuring out how to live a new life in a body that didn’t really look any different. I could fit in there. But at the many doctor’s appointments and trainings at Children’s Hospital in Omaha, I was a drippy, angry, sad mess of a teenager that had just been given a giant curveball in life.

Over the past 26 years diabetics and non-diabetics alike have asked the question, “What’s good about diabetes?” That question made me rage. NOTHING, I said for many years. And still, I feel that deep in my soul. Diabetes is a mess-up. It’s a stain, a mistake, a tragic fall within the human body where my very own autoimmune system has betrayed me. In that sense, there is nothing good about the whole shebang.

But here I am, 42 years old. A productive member of the community I live in. A wife. A mom. A woman who has loved other people’s children and who strives to love others well. And you know what I see so clearly today? Type 1 diabetes has made me who I am. 

Okay, so let’s not get dramatic about this. I believe God is sovereign over all things and that he knew T1 would be part of my story. Joni Eareckson Tada in her autobiography Joni refers to our lives as masterpiece paintings on a stretched out canvas, only we can see just a little bit of that canvas at a time. My story is a beautiful one. It is a particular one. And so so so very much of who I am today began with a diagnosis of diabetes on Monday, November 14, 1994. Other than my childhood moves across the country for my dad’s work in hospitals, diabetes was THE thing that began shifting me from someone who expected the world to go her way to someone who empathized deeply with others in pain. 

Diabetes changed me.

For so long I was dead set on putting diabetes last on my to-do list. I ran the race of life and pursued my goals. I married my love at a young age and finished college while he worked through grad school. I proudly earned a teaching degree. I continued a life in ministry, in both paid and unpaid positions, and learned about the way the church is uniquely equipped to serve the body and soul as it follows Christ’s leadership. Meanwhile I was inconvenienced almost constantly by diabetes. I didn’t always have money to deal with the unscheduled ways diabetes wreaks havoc on a life. By forgetting to fill prescriptions early I learned that kind pharmacists can be the most blessed people to walk the face of this earth. I learned that normal people activities like walking the hot pavement of an amusement park in the middle of the summer revealed my abnormal need to consume sugar to avoid passing out. I had to eat when I didn’t want to and skip eating when I was super hungry. All par for the course for a diabetic. I had to drop almost $100 on a vial of insulin as a very poor 23 year old after my prescribed bottle got too hot in the cab of our moving van. I missed a ski trip with my youth group girls in order to visit an ER after puking all night, and I very memorably got diagnosed with diabetes ketoacidosis (DKA) after years of putting diabetes in a low position of importance. DKA will kill a person, and that was the closest I’ve come to death in this race so far. It scared the tar out of my young daughter, and though it wasn’t a turning point in my self care, it was the beginning of the curve towards giving diabetes the attention it needed.

As much as I long to ignore diabetes, I cannot. And now T1 is receiving the attention it deserves from me. Others might do woodworking, or be the DM for Dungeons & Dragons. Some might join knitting clubs and others might run marathons. I do diabetes. And I do a host of other things. You would not believe the strength of the T1 diabetes community! These people are warriors and can do any of the activities I mentioned above. But for all of us, diabetes requires a gigantic portion of our brains. The good news is that I am trying to take great care of myself these days and I treat T1 like a hobby. I’ve learned to stop and eat when my body needs to be fed. For years I stopped and fed my babies first, always sticking to their timetables and doing what their little bodies needed, as moms do. But now it’s me time. I change out my infusion sets every few days. I recharge and tape the CGM on my arm every 7 days. I pause to check my glucose at home, in bed, in the aisles of Target, before I drive. And I put juice boxes and fruit snacks on my Walmart shopping list and then gently remind my kid not to drink the last of the apple juices just in case I need them. She’s polished off the Sprites and Diet Sprites for my sick day regimens, so those will go back on the grocery list next week! 

I take care of myself. And by doing this, I’ve learned that all of us human beings are limited creatures. If I had to pick one word for the year I would pick LIMITED. 

Last year my friend Emily and I led a bible study group through Jen Wilkin’s None Like Him and In His Image. One of the biggest take-homes I got from those books is that God is so very other. He is not like us, no… we are like him, in teeny tiny shining ways. I struggle with my limited nature all the time. It’s a way that I want to be God (instead of being content to just try to be like him). I want to be good at ALL THE THINGS. I want to learn ALL THE THINGS. I admire someone and want to be that part of them I admire. I don’t like having limits and boundaries and things that get in my way. I. am. limited.

Diabetes is one of the things that limits me.

But guess what? If I think about it for more than two seconds I know that you have limits too. We all do. We are all born into limited bodies. We all have limited amounts of time to enjoy each day. We have limited skillsets and limited gifts and when it comes to you I embrace that! I love what YOU bring to the table, but I struggle with being content with my own limitations.

All that being said, I’m coming into my own in my early 40’s. I’m glad I have eyes to see how my limits sometimes chafe me, because in seeing this dilemma, I know it won’t rule over me forever. I’m beginning to value and appreciate my boundaries as a human in the way I value and appreciate others. Case in point: being grateful for diabetes. (Yes, even typing that sentence made me throw up in my mouth a little.) I’m not exactly grateful for the brokenness of it, but I’m grateful for how it has shaped me. I love others better because of type 1 diabetes. I can empathize with others’ plights because of diabetes. I can mourn in your hospital room over the baby who never opened his eyes, I can cry on the phone over your diagnosis, I can pray for you in a different way and tend to your lows and highs because I, too, have been there.

The T1 diabetes diagnosis when I was 16 didn’t reroute my life, it set me on course to be who I was meant to be. And for that I am thankful.

Last week I had a few hellish nights surrounding a much-anticipated trip with my girlfriend. If you hang in there with me for a sec I’m going to swing this conversation back around to the hot take culture we’re experiencing right now, particularly on social media. But the trip… oh the trip! I love to travel. I dream about traveling and I am instantly inspired by looking out a plane window or a car window onto new-to-me surroundings. Give me 75mph on a rural highway in Nebraska or a flight to Florida high above the clouds, the experience alone makes me giddy. I also have this other thing—and it’s a brain problem—and it’s called anxiety. My travel anxiety is further complicated by the very nature of type 1 diabetes, which demands I prepare for all contingencies in order to… well… in order to stay alive. Type 1 is a jerk like that.

So while I was tremendously excited to ditch town for a few days, my brain was freaking out a little. Or a lot really. I rolled over in bed the night before we left home and thought blearily, “Is today the day I get on a plane?” and after that I was wide awake. When you wake up at night and can’t sleep you play all kinds of games to try to either fall asleep or, at the very least, rest your body. It was only 3:00am, so I tried to be cool but I really was getting more amped up as each hour passed. Enter type 1 diabetes and before long my body started burning ketones.

Ketones are chemicals that build up when your body starts to burn fat for energy. Sounds good until you read a bit more and learn that in T1 diabetics a build-up of ketones can lead to Diabetic Ketoacidosis (DKA) which, if left untreated, can lead to a coma or death. I’ve had DKA before and it was tremendously scary. I’ll do anything to avoid it, which is why, when my body started producing ketones—likely due to stress—in the early morning hours before I boarded a plane, I got more stressed. I also started tending to myself. Gone was the carefree and excited feeling of getting to travel, and present was the need to pound liquids, deal with nausea without actually vomiting, dose insulin to flush the ketones, and try to eat a few carbs to give myself something else to burn. This was not my first rodeo. I struggled to eat; my toast tasted like cardboard in my scared, dry mouth. I struggled to drink and ran to a gas station for a sugar-free Powerade. I pounded the sidewalks out front in 19 degree weather in order to get the blood flowing and do something with my energy. All the while I kept checking for ketones (aka peed on a stick), kept pricking my finger for my glucose, and managed to pack up my 9th grader and wish her a good day. Yes, I did feel like throwing up while driving her to school but I was determined to send her off. It’s amazing what a little determination will do. When I got into Maralee’s minivan for the drive to the airport I looked like death. Already really pale, I was a ghostly shade of pale at that point. I caught her up to speed and suggested that if I wasn’t clear of ketones by the time we hit the airport she should drop me at the hospital and go on her way without me. (I’m certain she wasn’t excited about that option, for many reasons.) My protocol for self-treatment worked beautifully, however, and though I was way behind on sleep, I righted the ship and had zero ketones a hour later. We got on the plane, I crashed in a nap, and we landed to start our adventures. This story was essentially repeated two more times over the course of our four nights away. Two more nights of anxiety, illness, and stress. Two more days with hard crashes into morning naps. And yet, we made loads of memories. So really, I won!

I write all this down to say that my body is unique. I have type 1 diabetes and a few other doozies in the autoimmune department, and until Maralee was witness to every little blood sugar and insulin pump and ketone issue for five days straight, I didn’t think about how much energy it takes to simply live. That’s my life with diabetes. It requires nitty-gritty, hands-on babysitting day in, day out.

People in newstories, people in your newsfeed, friends, enemies, whoever… their needs are unique as well. Before you issue your hot take online—and by that I mean your opinion—take a minute and consider, what do I really know about their story? Am I the best person to comment on their needs? If not, how can I say something encouraging and true rather than critical?

Some of you in the midwest may have heard a KETV news story about a little girl in Iowa who fell asleep on a bus recently. The bus driver didn’t walk back to make sure all children were unloaded and the little one’s morning bus ride went from a 30 minute routine to an hour and 10 minutes. She spent an extra 40 minutes riding the bus. That’s not the worst thing for the average kid, but for this child it was a very bad thing. This little one has a rare form of diabetes where she swings from low glucoses to high ones without any warning. I think I read that she can’t take any insulin without dropping dangerously low.

What I witnessed on Facebook was a surprising number of commenters who were angry with the girl’s mother for raising a stink about her daughter being left on the bus. Without reading the article, without listening to the story, they commented and judged her. They assumed this child was an average child without any special needs. And even when the mother—a single mom, as it turned out, with epilepsy and no husband and no family support close by—began to defend herself in the comment section, people were still terribly rude.

Yes, online commenting is notoriously nasty. But it doesn’t have to be. And it’s not just Facebook, it’s everywhere. I cannot stand being on Twitter because I feel like people are just punching each other there. If I guard my Instagram account it’s a relatively nice place to be. But I’m not content with this and I want to talk about it. WE ARE ALL UNIQUE AND YOU DON’T KNOW EVERY STORY.

Even on my diabetes support groups, which are often a really cozy and encouraging space on the internet, I’m finding folks who simply go for the hot take. Instead of perhaps supporting a person’s desire to stockpile some meds or pantry items in case this coronavirus spreads to the US, they are harping on **fellow* diabetics saying this virus is no different from the flu. And yet, they don’t know which T1 also has RA and is on meds which suppress her immune system (raising my hand). Autoimmune issues tend to run in packs, but even if that wasn’t so, which T1s are also on dialysis? Which ones are caring for elderly parents with lung problems? Which ones have survived cancer and have depressed immune systems? I could go on and on.

The truth is, your judgement is hurtful and your judgement is unwelcome.

Before you type, stop for a minute and ask yourself, why am I writing this? How might the original poster interpret my comment? If there’s a chance it could be perceived as hurtful, perhaps I should hold off. And if it’s something that needs to be said, should I take this to a private venue?

I’ve been thinking about that mom in Iowa and I’ve wanted to contact her to share a bit of love. Her life sounds hard. Imagine having epilepsy and then having a medical tricky child who you have to put on a bus each day to get to school. Imagine the fear of wondering if she might drop too low or shoot so high she needs to be hospitalized or worse, dies. Imagine trusting the bus driver to do his job and then he, for whatever reason, messes up. Imagine all the worries of a normal parent and than multiply those by a hundred, or by a thousand.

Honestly, I don’t know what to do about my issues with anxiety and travel. I’ve spent several summers in therapy with different therapists working on the issue and yet, here I am after a particularly bad (yet marvelously wonderful) trip. I survived it, but I’m not going to travel again until I have some more solutions. Therapy, better drugs, whatever; I’m game for whatever works. What I do know is that I’ll keep pressing on towards hope because I truly truly love traveling and I want to see the world. We figure out how to do what we love to do, even when it’s not convenient or simple. All I’m asking for today is a bit more grace, a bit more patience… and a heart and typing fingers that give up the hot take in order to truly see another human behind the screen.

Diabetes takes up a certain percentage of my brain all the time. However, I’ve had type 1 diabetes for so long now that I have an auto pilot mode. I can be sitting in a group of friends, listening and laughing along with them, pricking my finger for a blood sugar while simultaneously counting carbs and making estimates regarding my activities for the next three hours. That’s what I do ALWAYS. I don’t get a break. I can’t ever stop thinking about what my blood sugar is doing and how food and exercise (yes, laundry is exercise too) will affect my being. So that’s my baseline, all that brain work.

But there are days when the baseline percentage doesn’t even come close to cutting it and then I find myself utterly distracted by diabetes care. Another way to rephrase it is that some days diabetes require much more of my focus.

Sunday was “change” day for my sensor (which usually lasts one week). I woke up, changed the site, and planned for a day of increased calibrations-—a little more attention paid to matching numbers from the sensor to my blood glucose. It also ended up being change day for the infusion set I typically wear in my abdomen. That little cannula delivers insulin from the pump to my fat layer and I have to rotate it every three days. I changed the infusion set around lunchtime and continued on my merry way—-diabetes present but not front and center—-until things went haywire that afternoon.

A really good Sunday afternoon involves coffee and random shopping with a beloved friend. If we can get this time we take it and we make every second count with laughter and conversation. If I could go back to Sunday I’d understand that my CGM, which was refusing to calibrate properly, was taking up a huge percentage of my brain power. At the time I acknowledged that something wasn’t working properly and pushed through our soul-refreshing time anyhow, but I didn’t fully realize how it cluttered my brain and pressed in on our fun time. Usually I can troubleshoot a diabetes issue and in a few hours normalcy will resume. This time I’m looking with more scrutiny and I can see that the last two days have a been a cluster and it affects me.

It’s Tuesday morning now and I feel like I have a minor version of the flu. My head aches. My body is so tired. I feel sluggish and out of sorts and frankly I think I will take a sick day. Because, since Sunday afternoon, nothing has been normal or routine about diabetes in my body. It’s been a bit since diabetes has thrown me this out of whack, but I’ll take in my present reality and remind myself with patience and grace that having a chronic health issue leads to days like this one.

So Sunday night was not really fun. No matter what I tried I couldn’t get my sensor to work properly. I’ve only been relying on a sensor for the past 11 months, so at that point I removed it and resigned myself to poking my fingers for the next 12 hours until I could put a new sensor on in the morning. (Sensor placement isn’t a nighttime activity unless you’re a T1 who doesn’t care about sleeping. Calibrations happen frequently the first 12 hours so you’d get awoken quite often.) The next morning was a brand new day and the new sensor worked and I was back in business. It wasn’t until lunchtime Monday that I questioned how long I had been fighting elevated blood sugars.

Back in business? Not really. My glucoses had been above normal since I changed my infusion set the day before. Again, troubleshooting time. Here’s what that looks like:

PMS elevates sugars. Is is that time of the month?
Stress elevates sugars. Did our weekend travel affect me?
Sickness elevates sugars. Am I coming down with something?
Bad insulin elevates sugars. Was my insulin in the sun while we were driving?
Poor infusion set placement elevates sugars. Did I place it in a scarred spot on my stomach?
Kinked infusion sets elevate sugars. Without x-ray vision I won’t know until I remove the set.

Ticking through that checklist I decided that I’d change my infusion set. It was high time to get those numbers down, I was starting to feel terrible. I didn’t think the insulin had gone bad—and insulin is like liquid gold these days, you don’t want to throw out a good vial—so I marked the box and put it back in the refrigerator to test on another day. I put another infusion set on my stomach, careful to try and get a good spot (which is a crapshoot, but oh well) and within a few hours? RELIEF. My numbers went from sky high to normal and remained there for hours throughout the evening.

Sounds good? Just wait.

My numbers around suppertime were so good and steady that I required very little insulin. Like almost none at times. Every so often the pump would give me the teeniest bit but I didn’t need more until… until I did. My daughter and I went out for pumpkin spice lattes on a cold and rainy night. I paid an exorbitant amount of money for the decaf coffees and a few snacks—and moments later realized they had given us grandes instead of talls. So basically we had vats of sugar. Normally this would elevate my glucoses but I could roll with it. What happened last night was that it completely shocked my system as I had no extra insulin on board.

Also—human error here—I forgot to bolus for the sugar I consumed.

An hour after I crawled in bed I had what I can only call “diabetic thirst.” It’s a thirst level that is unparalleled, unmatched, starvation-thirst. And it’s very familiar to me. I’ve deduced that having high glucoses makes me crave sweetness, too, so what I want in that moment isn’t water—it’s sugar free Powerade. Lucky for me I had picked up some that day (it’s a T1’s BFF on a sick day). I also had a near-crushing headache. Those two symptoms sent up an alert in my brain and I reached for my glucometer. 450. WHAT. I can’t even remember the last time I saw a number that high—it’s been awhile. And to have gone from an 80 glucose to 450 in such a brief amount of time? Well, that’s why I’m feeling like a train hit me today.

I did all the things on my checklist at that point and I did them quickly. Peed on a stick—yup, big ketones staring at me. Dosed a bunch of insulin to bring down the high and to cover what I had consumed. And then, didn’t want to do this one, but I rolled out of bed and began pacing the basement (to get the heart pumping, which will flush the ketones faster and get the insulin working right away) after filling Jeremy in on what my body was facing. He knows how to troubleshoot with me, and also knows how to keep me calm during these high ketone moments (which will send a T1 to the hospital pretty darn fast). I began pounding the sugar-free Powerade and—this is my latest top secret helper in ketone dilemmas—I took half a Xanax. I could write more about the role of meds in treating a chronic illness sufferer’s anxieties, but that would be a post all to itself. Another time perhaps.

After 60 minutes no ketones. Not a trace. I went from a high level of ketones building up in my body due to little insulin on board earlier, to successfully flushing them out. Exhausted I got back in bed and asked Jeremy to wake me in another hour to check my blood sugar. He did. And then he woke me again two hours later to check again. To go from perfect numbers to crazy high numbers—with a giant dose of insulin thrown in—often means one thing: you’ll drop low in the night. Since I don’t want to die and Jeremy still wants me around, having him check on me makes sense. My numbers came down beautifully in the night, but again I found myself in the low insulin swing this morning. This up and down of glucoses, of insulin, is what has left me wiped out. Say nothing of the lack of solid sleep.

Damn you, diabetes. You are a prickly SOB.

I look around me and am amazed that most of the world eats food and never thinks of carb counts. Most of the world can go for a run and not fear death on the other side of it. If I didn’t know better I’d be mad about all this, but here’s what I know: everyone has something hard. I see you guys going through cancer (and Liv and I prayed for you this morning on our school drive). I see y’all with the broken marriages and kids who are hurting inside. I see you guys with depression and you guys with anxiety and you guys with mental illnesses too many and too confusing to name. I see you in the quiet gatherings fighting addictions and I know it’s a daily, moment-by-moment fight as relentless as diabetes. I see you with the existential crises that feel weightier than health issues. I see you with the unfulfilled longings and the daily aches. And I see you, too, my fellow humans who are fighting chronic pain and disabilities you’ll never be free from this side of glory.

This is my story, but it’s not the only hard thing. It’s my hard thing—one of my hard things—and boy am I grateful that it’s not always this hard either. Now if you’ll excuse me I’m off to check my blood sugar and lay around like a slug.

I wake up in the night and the back of my left arm is irritated. Taped down against my skin is a small filament that measures the sugar in my interstitial fluid. This device is a medical marvel but at 2:30am the desire to rip it out is strong. I do it, knowing that within the next day I must recharge the transmitter and move the site anyhow. Lights bright in my bathroom, I pull out alcohol from the cabinet and lightly clean the slightly inflamed CGM site wondering how many spots like this will dot my body by the time the next tech comes out. Scar dots all over.

I’m up before the fam. Everyday I’m up before them, and now I contemplate where the next CGM site will be, rotating mentally from arm to arm to stomach (no), boob (giant no), and thighs. The company that manufactures my supplies doesn’t approve of the thigh, but it offers a lot of real estate. I also have to use this area for my once-a-month two-syringe stabbing for rheumatoid arthritis so, mindful of that unfun task, I swab with alcohol again, load up the sensor into a device, and click the button against my leg. I feel nothing.

I’m oddly proud of this process. The positioning, the taping, the looking for a green light, the applying of more tape. It was so hard to do at first that I would sweatily stand over a manual, flipping pages and breathing heavily before making the next move. As with any repetitious action, it got easier over time and today I only misplaced one piece of tape. I can now problem solve most issues on my own. And that I did this morning as my pump didn’t recognize the transmitter for awhile. I faithfully read users’ experiences with this system however. I troll a Facebook page daily, reading up on problems and solutions, and their wisdom (and folly) has kept me afloat. There’s an 800 number, a trainer’s phone number, an endocrinologist’s office also on standby, but I’d rather not call any of them if I can work it out. Today I succeed. Each success is like a little firework saying “I got this.”

I’m glad for those small fireworks because there’s so much I absolutely don’t got. For instance, the deeper I embrace medical technology equals my complete dependence on the company that sells me the parts. I play a game in my head where I whittle down my needs to the bare minimum. I could get by with insulin and a syringe and a glucometer. That’s the minimum. I’m far beyond that at the moment however; there are a lot of moving parts to my new bionic self. To get those parts, I must have great insurance and I must be involved in a lot of plastic and cardboard packaging. Why do I value independence so much? Why does it bother me that I rely so heavily on this one company and how they function? I think deep within my psyche I’m a survivalist, always looking to move freely and without damaging the land. Ha! It’s time to let that fantasy go, girl. I’m the opposite of a survivalist. In all those apocalyptic tv shows and movies? I’d just say “nah” and take off the blindfold or go hug a zombie or whatever. Type 1’s, even hopeful ones, are realists.

So now there’s a sensor and its accompanying transmitter taped down on my thigh. It’s Day One of the sensor—good for a week officially (and more than that unofficially if you’re savvy). Day One is nuts between transmitter re-charging time, a two-hour warm up time, multiple calibrations, and blood sugar checks. Reminder to self: turn off the pump’s audio during church. Last week I got a few nice alarms during prayer that I didn’t appreciate. I am grateful times a thousand for this technology, but I’m still coming to terms with it. I’m different because of it. I have a dedicated section of my brain to problem-solving all those alarms, and it’s intimately connected to the brain parts dedicated to the rest of diabetes. Basically, I have a mere 10% of my brain for the rest of life. So far so good. Despite all the challenges, every night as I sleep this new system charts something incredible on the screen of my pump: a flat line. We T1s joke that it’s the only medical flat line anyone actually wants to see. I sleep and my glucose sits between 100 and 120 all night long.

That never happened before.

This little system, so obnoxious with it’s alarms and unexpected moments of troubleshooting lets me fall asleep without being afraid of dropping into a low blood sugar and never waking up. I never even knew I was holding my breath with that fear until I used the pump to its fullest capacity at the start of December. Two months in and I am still marveling.

I’m dependent on insulin.
I’m dependent on my pump company.
I carry a bag everywhere I go.
And multiple sources of sugar are always nearby.
I don’t leave meals to chance.
I need to know how much exercise is involved in everything I do.

And yet, here I am. Dependently alive. Alive and happy to be so. Thank you, God.

I’ve often felt like a sorry excuse for a Type 1 diabetic. I’ve avoided joining in on activities or conversation with other Type 1 folks—I’m going to type “T1” from here on out, FYI—for fear that I’ve be outed as the one who doesn’t fit in. I’ve long struggled with diabetes and have never felt like I’ve become an expert on it, but lately that changed. My perception didn’t change because I began going to the doctor on regular intervals or because I’ve invested in more medical technology that will improve my health. No, my perception was altered by actually entering into conversations with other T1’s. As it turns out, no T1 is the same. Our struggles are similar and we have the inside scoop into our very challenging realities, but none of us are cookie-cutter and because of that, our treatments will vary based on a number of factors. All this time I’ve felt like an outsider, but I’m not. I’m one of the group.

I’ve long known that diabetes must achieve Hobby Status in my life. It’s got to take up as much time as anything else I’m engaged in—and I haven’t been a fan of that reality because I don’t like diabetes. Alas, how many of us like every aspect of our lives? Yeah, that’s what I thought. Sometimes you gotta go what you gotta do, like it or not. My endocrinologist has encouraged me to use a continuous glucose monitor (CGM) for years now, but I hated the last one I wore. She assured me the new model was far better; I still dragged my feet. It wasn’t until another doc joked with me about my hesitancy towards trying anything new medically that I became determined to prove my docs wrong and dive on in to the new tech. No school this semester, so it seemed the perfect time to try something new. And furthermore, this something new had potential to really improve my longterm outcomes health wise.

In October I received my new pump + CGM from Medtronic, and in November I was trained on how to use it. I’ve used an insulin pump for all but five years of my life as a T1, so I’m used to that therapy. It was this CGM—which involves a transmitter and a sensor—that I had to learn how to place on my arm, tape down with one hand, and then connect to my pump. This sensor is really something. It’s a teeny filament that goes under your skin, put in place by a needle you then remove, and it measures your blood sugar via interstitial fluid—basically the fluid between fat layers. It’s not as accurate as a finger prick (or blood glucose, BG) but it will trend up and down following my BG, so it’s pretty awesome. Even better, the transmitter wirelessly sends the sensor glucose (SG) to my insulin pump every five minutes. So in November I learned about the CGM, put it on (myself!) with the help of two nurses, and then breathlessly tried it myself at home seven days later with an open manual, a lot of sweat, and some prayer. For anyone who’s keeping track, the sensor is usually worn on an upper arm, abdomen, or leg, and it lasts about seven days. The insulin pump site, on the other hand, goes in my abdomen and is replaced every three to four days. What’s that you say? You don’t like needles? Me neither. But yes, I willingly poke my gut, my arms, and my fingertips all the time. I’m sorry to be a little unfeeling, but I don’t care that you can’t stand your yearly flu vaccine. Suck it up, buttercup.

A few weeks ago I went into the next stage of life with my new pump system, and that is something absolutely amazing called Auto Mode. This pump is basically a sweet little computer and I’ve heard the word “algorithm” thrown out more times than I can count. From what I understand, an actual rocket scientist designed this thing, and what is now happening is that my pump decides how much insulin I need between meals and gives it to me in microboluses. The other day I noticed it gave me 0.050 of a unit. Uhhhh, WHAT. Teeny teeny doses. My reality is this: every single carbohydrate that goes into my mouth must be matched by insulin. I’m still in control of counting carbs and giving a bolus of insulin (via pump) at mealtime. But between meals, this super rad little pump keeps track of my SG and then counters it with the smallest increments of insulin necessary. Sometimes the pump withholds insulin. If I’m exercising or gave enough at lunch to last me awhile or if my SG is dropping swiftly, the pump with not give anything. And the sweetest part of the deal so far is that if I’m crashing (meaning I’m experiencing hypoglycemia and could, yes, die) the pump will suspend up to a few hours. This is lifesaving stuff. Automode has kept my BGs in between 100-120 most nights while I’m sleeping and that just blows my mind.

Non-diabetics tend to get more excited about this tech than T1s do. The reality is that my new pump system is a lot to keep up with. My brain is pretty devoted to figuring it all out right now, and I really don’t think I could train for a new job or be engaged in finals season while learning the new system. But I have it on good authority that I’ll figure it out and eventually it’ll require less of me. I say non-diabetics are more worked up because they are, and because they really don’t know what’s required to keep up with diabetes (unless they’re a parent of a T1 or an endocrinology physician or nurse), so their enthusiasm for our potential good health should be tempered by the fact that they don’t have to poke themselves a ton or get up five times for an alarming pump or fish the pump out of their bras during a nice dinner just to get insulin. It’s a weird disease, if I’m honest. What we T1s want most is a lot of support and understanding. A hug, a celebratory chocolate at the right time, a word of encouragement, a well-timed question about how things work—all of that goes a long way. And if you know the carb count of the cookie you just made? Well, that’s the icing on the cake. So to speak.

All that to say, T1 is CRAZY TOWN but I’m feeling hopeful. Lord willing, the tech will get better and better. I’m hearing a new transmitter is coming out soon, one that will replace the current version which is sometimes glitchy and alarms for dumb reasons. For the first time in a long time though, I’m hopeful about growing older, feeling better, and having more energy. I feel like I’m on top of this game rather than chasing behind it, and for me at this moment, that’s enough.

I went to an appointment this morning. And then it snowed really hard. I scraped the heavy, wet snow off my car and came home more bionic than I was a few hours ago.

Bionic? Does anybody use that term anymore?

This girl, the one who is s-l-o-w to embrace new tech is now wearing new tech. I’m plugged in. The nurse educator I met this morning wasn’t familiar with The Matrix, so I had to explain that it felt kind of sci-fi, almost like I was getting a bug implanted in me. She is CLEARLY not wed to Jeremy Tredway. (I not only know The Matrix, I’ve watched it more times than I can count and can quote it if the mood is right.)

I already wear an insulin pump. Every few days I insert a needle into my abdomen, remove it and in its place is a small catheter that delivers insulin to be absorbed through the fat layer of my body. The insulin pump is an incredible piece of equipment and is worth the irritation of wearing a pager-sized device on my person at all times. I remove the pump itself for bathing or swimming, but other than that, like Ruth and Naomi, wherever I go, the pump goes too.

Today we added another piece of equipment to my body and from what I understand this new device will also make my life more beautiful. Once I figure out how to really use it, that is. I got all squared away with a CGM—a continuous glucose monitor. It is a lot smaller than the pump and is inserted in a similar way, with a needle that is then removed almost right away. This time the teeny-wheeny super duper small part left in my skin is a glucose sensor. It reaches what’s called interstitial fluid underneath the skin layer and reads a glucose. From my fingertips I draw blood glucoses (BGs), but from the CGM it’s called a sensor glucose (SG). The deal is that I wear this small sensor and transmitter all the time and then I don’t have to prick my fingertips as often. The real beauty of the situation is that the CGM will allow me to see how my blood sugars are trending. Going up, going down, going down fast? It can tell me all that. It will also beep incessantly to, say, wake me up at night if my glucoses drop dangerously low.

A few weeks ago I woke up around 2:00am to sirens in my neighborhood. I am strongly attuned to siren activity after living in a fairly transitional ‘hood for over 10 years, and as any good neighborhood watch person would do, I went to the window to see what was going on. A few days later I learned that a neighbor had a really bad low blood sugar reaction complete with seizures and the emergency personnel struggled to wake him. He went to the hospital. Having this occur so close to home was a solid reminder that good control for someone with diabetes means walking a fine line of normal glucoses versus dangerous ones. Thus all the helpful tech I’m talking about. The goal is to keep folks with diabetes as healthy as they can be.

I don’t really know what I’m doing with the CGM. I know that I’m waiting until noon to calibrate it and that I’ll do several more calibrations later in the day. I have a few handy guidebooks that will help remind me how things work and what goes where and when to do what. There’s an 800 number that’s available 24/7 and the nurse wants to check in with me later in the day. Other than that, I feel confused and trust that various pieces of equipment will beep at me soon and then I’ll be digging for those guidebooks once more.

Those who know me and love me well know that I would completely ignore diabetes if I could. They don’t like this about me and everyone wants to help me care for myself better. But the truth is that *I* have to want it. All the wanting in the world can’t make me be responsible for diabetes if I don’t want to be responsible.

Diabetes is full of numbers and graphs and charts and precision and pokey things like needles and lancets. Do you see all the graphs and stats I post on The Prairie Box? No? And there you see the bend of my personality.

But this year I will hit 20 years of living with diabetes. I want to stick around for a long time. I want to be in good health as long as I possibly can be. I want to be ready when a surgeon comes at me with stem cells that are magically turning into a working pancreas, though I can’t really talk about that much because it seems like such a far off dream. So for now, for today, I want to engage the absolute best piece of tech—the one that makes more of an impact than any insulin pump or CGM on the market—and that is my brain. Nothing money can buy is more important or helpful to diabetes care than the strength and will God has given me to make good choices.

Feel free to ask me about diabetes. I’ll share what I know! Do not feel free to ask me if I can eat that piece of cake or not. It’s none of your business. And I say that in the nicest way possible. ;)

It seems ridiculous how much I love things like doughnuts, cookies and cake. I have diabetes for crying out loud!

For the record, I can totally eat sweets even though I have diabetes. Having Type 1 means I need to give a proportionate amount of insulin for the carbohydrates I consume. I cannot make my diabetes go away by eating less sugar. Consider yourself informed.

So… I do love a good doughnut. I told Jeremy I have plans to make a drive to Krispy Kreme in Omaha just for the heck of it. However, that’ll have to wait as I’m going to clear my system of baked goods for a time as I go gluten-free. I’ve done this once before—for a 30 days stint—and it’s time to go for it again. We’re choosing healthier options in the Tredway household this summer. Yay for us!

If you have a gluten-free product you really love, share it in the comments section.

To my shame, I admit I am quite ignorant of most copyright laws. Does anyone (Renae?) know how to correctly share the following column? Thanks, Karma, for passing this on to me.

American Life in Poetry: Column 033
By Ted Kooser, U.S. Poet Laureate

Katy Giebenhain, an American living in Berlin, Germany, depicts a ritual that many diabetics undergo several times per day: testing one’s blood sugar. The poet shows us new ways of looking at what can be an uncomfortable chore by comparing it to other things: tapping trees for syrup, checking oil levels in a car, milking a cow.

Glucose Self-Monitoring

A stabbing in miniature, it is,
a tiny crime,
my own blood parceled
drop by drop and set
on the flickering tongue
of this machine.
It is the spout-punching of trees
for syrup new and smooth
and sweeter
than nature ever intended.
It is Sleeping Beauty’s curse
and fascination.
It is the dipstick measuring of oil
from the Buick’s throat,
the necessary maintenance.
It is every vampire movie ever made.
Hand, my martyr without lips,
my quiet cow.
I’ll milk your fingertips
for all they’re worth.
For what they’re worth.
Something like a harvest, it is,
a tiny crime.

Katy Giebenhain, Best of Prairie Schooner: Fiction and Poetry