Todays is V’s Diaversary. Eight years ago, on May 22nd, she was diagnosed with T1D. She was eight years old. Today, 5/22/21, marks half of her lifetime lived with diabetes.
It’s almost hard to remember our life before T1D. And every photos of May 2013 preceding the diagnosis is clearly marked in my head as “before”.
Celiac diagnosis technicality didn’t come till August. But they told us at the hospital that most likely V had it. We never really formally acknowledge Celiac diagnosis day, but today it seems fitting to at least give it a nod. It certainly likes to complicate things.
Eight years of “after”… We’ve seen a lot. She’s had her share of frustration, burnout and pain. More is to come. But it doesn’t stop her or define her. Those who live with or around T1D know that “control” is a bullshit concept that does not exist and does not matter. What matters is learning how to live your life well, not despite, but with T1D.
While “before”‘is no longer an option, we will take and actively create as much of well-lived “after” as possible.
Husband: I’ve noticed A has been drinking a lot yesterday and today. More than normal. He got up a couple of times to use the bathroom.
Me: Hmmm. Concerning, but probably nothing.
Husband: [after a day of out of town BMX racing] He was not hungry, didn’t eat dinner. Said his stomach was bothering him. He crashed at 7 PM.
Me: [Quietly freaking out a little] OK, when you get back, we need to test his fasting BG. Just to make sure.
The following morning…
Husband: Hey, A is still asleep (it’s around 8 AM)
Me: SHIT. Where is the nearest CVS? Or any pharmacy? You can buy a cheap kit and check him…
It’s probably nothing. We are paranoid. Aside from him getting really tall and skinny in the last few months (he went through a major growth spurt right around his 13th Bday in November), there were no other signs until a couple of days ago. OK, he’s been sleeping more too. And really hungry. But he’s also a teen boy.
There was no point of re-do. We knew it. But tested again anyway and there was no difference. Upon returning home, we tested again. High BG, large ketones. There was no room for doubt…
Endo on call: I will arrange for direct admission. You don’t need to go to ER.
Me: Do we really need to be in the hospital? Can we wait until tomorrow [Monday] to do it in outpatient?
Endo: With high BG and large ketones, you do. I am sorry. I know you know it too.
Damn it, she was right. I knew it, but did not want to hear it.
On the way to the hospital…
Me: Your life is going to change a lot and not at all. No more mindless snacking. No more running out of the house empty handed. You’ll have to carry crap everywhere. You will need to take diabetes into consideration with just about every daily decision. It’s going to be there 24/7, 365. But you will be able to continue to do everything you’ve been doing.
A: I probably won’t be able to travel for BMX?
Me: Why not? Of course you will. I’ll tell you the same thing they told us at the hospital when V was diagnosed: we fit T1D into our life, not the other way around.
Whirlwind 24 hrs in the hospital. Like speed dating, but more morbid. Same attending Endo who was there 8 years ago when V was diagnosed. Nurses, doctors, dietician, PT, social worker, and many other visits. Shots, carb counting, starting on Dexcom right away. We got this, this is not our first rodeo.
This is the crappiest BOGO deal ever. Zero stars. We did not ask to be admitted to an extra elite T1D club. And damn it, we are going to be OK. Welcome to the double dose of “It’s OK and it sucks, forever.” We are going to throw all of our experience, sarcasm, coffee and wine at it. Onward!
It’s been a while. I don’t even know if anyone is still reading. V submitted this poem for school English assignment. When you are diagnosed with T1D and Celiac at 8, it becomes part of your identify. And when you are almost 16, you may develop an uncanny ability to beautifully articulate it. Without further ado, in her own words…
Which Girl Am I?
I often find myself wondering, who am I?
The question society has expected me to figure out before all of my teeth have even grown in. What do you want to do? What do you like? How would you describe yourself? Who are you? The word identity, twirling around my head.
But who really am I?
My world, filled with masks, smiles and pain.
“Your daughter has type one diabetes.”
“The endoscopy went well, however we’re so sorry to tell you it came back positive”
Here comes illness number two. A best friend for my diabetes, Celiac Disease.
“I’m sorry,” number one.
“I’m sorry,” number two.
“I’m sorry,” number three.
“I’m sorry,” number four.
“I’m sorry,” number five.
“I’m sorry,” number six.
“I’m sorry,” number seven.
The ‘I’m sorrys’ from the doctors, the diagnoses, the prescription medications never ending.
Is my identity the sick girl?
The girl who practically lives at the doctor’s office and hospital?
The girl with the legs full of scars or the loud beeping medical devices attached to her.
No. There is no way.
My life is so much more.
My identity is so much more.
I am so much more.
The girl who prides herself on knowing three languages. English, Russian,Spanish.
The girl who laughs until she cannot breathe every time she’s with her best friend.
The girl who does not refer to her friends by their names anymore, just the silly nicknames that have arisen from our countless years and memories. Vitch and Ayxch. Potato and Alfredo.
The girl with the weird catchphrases that never fail to make someone laugh. Cashmoney, saucy or the endless keyboard smashes instead of a basic laughing emoji.
Is the girl who never fails to make anyone laugh or feel loved and appreciated the same girl as the one whose diaries are filled with pages of hurt and anger.
The girl who pulls out Matthew Gray Gubler’s, “100 reasons to live” paper to remind herself that one day things will change.
To remind myself I deserve to live.
Maybe one day I will be “normal.”
Because the masks I wear are my identity just as much as the bare face underneath. The way I present myself, my image, my persona that is displayed to the public is just as much me as the tears that get wiped away late at night as everyone else sleeps. There is no way the same girl who has sleepovers with her brother after a scary episode of criminal minds is the same girl that was forced to grow up and face the harsh realities of life within the walls of a doctors office instead of birthday sleepovers and parties. The resentment, the hurt, the questioning, if there is a god, why me? I was eight. I was and still am a child. Eight years old. Not even allowed to watch spongebob yet. What did I do to deserve this? Nothing. “Things happen for a reason,” that is what all the adults say. But what is the reason? The reason for the sleepless nights? The reason for the painful treatment? The reason for the unjust resentment in the world? There is no reason, it simply is. But I cannot let myself lose this other girl. The girl who sings disney songs like there is no tomorrow. The girl who dances in circles every day. The girl who gets up and gives her all, even when her all looks different. The girl who at her core, knows her worth, even if it takes some time to believe it. I can tell you with certainty, the girl in sixth grade who wore cat leggings and shirts that said DabCat with crazy patterns because they made her happy is surely not the girl who follows the fashion trends now, scared to disappoint or to not “fit in”. But that is okay. It is ok to need to watch Lili Reinharts 10 minute speech about body positivity and acceptance to remind myself that my body is beautiful, my body deserves respect and my body is as healthy as it can be. It is ok for me to need reminders. Especially in the world I live in today. A world in which nobody can be perfect. The girl who was dying, sick, skin and bones. Told she was beautiful. Told it’s good to lose the pounds. That is not the girl I see when I look in the mirror. The girl who now, seven years later, is shamed for her jeans size. “Eat a salad, go on a run, you’re a competitive swimmer, how are you not skinny?” In a world today where skinny seems to mean healthy. “Eat less. Run more. You are not good enough.” But oh? Why are you sad? Why are you self conscious?
And if those two girls are the same? Then which one is MY identity?
“You have a perfect life”
Is it Ok to be sad? I have everything I need and so much of what I want.
Of course it is, I hope.
That shame, the anxiety, that resides in me, but it is not me.
I am strong. I am a good person. I am enthusiastic.
I am sympathetic. I am beautiful.
I am worthy. I always have it in my heart to forgive. So which girl am I?
The girl with the messy room and the battle going on inside her head?
Or the girl with a smile on her face, ready to face the world? I am both. My identity, too complex to pick a single side. My identity is with me, forever growing and forever changing.
I am a member of a big diabetes facebook group. Due to a large overlap between T1D and celiac, it often comes up. When someone asks a question in regards to the interplay between the two, in general responses are helpful and informative. But once in a while I see things that really rub me the wrong way.
Cue to about a week ago, when a parent posted about their 6-year-old T1, who was very recently diagnosed with Celiac. They said that since going gluten-free, kid’d blood sugars have been running high and they were having a hard time managing it. They wanted to know if it was common.
The responses that followed emphasized that GF substitutions tend to be higher in carbs, which is 100% true. But the ensuing recommendation was to cut them out. Research Keto options! Eliminate processed foods! Home-made food is better anyway! When I was pregnant it was easier for me to just avoid those foods altogether!
FULL STOP
Did no one fully read the post? We have a 6-year-old kiddo who, on top of T1, just got diagnosed with Celiac. Their world got turned upside down again. They were just getting the hang of how to manage diabetes and deal with different foods and live with various limitations. Now they have to do it all over again, and your recommendation is to restrict even further?
Those people who made the comments are probably not parents of little kiddos with a double whammy of a diagnosis. And maybe not parents at all. Because parents know that it’s hard enough to feed a 6-year-old as is. With some of them, good luck if you can feed them anything other than PB&J sandwiches and goldfish crackers. And so many snacks are all about gluten. Enter diabetes, and you must start counting carbs and doing complicated math. Add celiac, and now you are also scrutinizing every label for obvious and hidden sources of gluten, you can no longer rely on a quick stop at Subway or pizza take out for when you are on the go or simply have no time or energy to make a meal. And the kiddo cannot eat so many foods, and at 6 they can barely understand why. This is hardly the time to recommend restriction.
Oh and by the way, for those with Celiac, gluten interferes with absorption of nutrients and vitamins. So when people go gluten free they start absorbing ALL the things better. And it can translate to needing more insulin than before because now more carbs are absorbed. So the first answer to this parent’s question should have been YES, this is a common occurrence after receiving a correct diagnosis and starting a gluten free diet. This is a good thing actually. It means that healing started.
As to what I would recommend, first it is to increase insulin as needed. Work with your Endo, be prepared that things may change quite a bit in the next few months. Go ahead and find replacements for favorite foods. Find foods that your kid will eat and will enjoy and that will result in the least amount of restriction possible. Give the entire family some time to adjust and adapt. Later on if you want to experiment with Keto recipes, or do a more drastic diet overhaul, go right ahead. But it’s OK to find your footing first.
While I’m at it, let me proudly re-display one of our favorite substitutions: frozen GF waffles from Trader Joe’s. Clocking in at 21.5g of carbs per waffle, compared to about 15g of their gluten-containing counterparts, they are delicious and totally bolus-worthy.
Let’s do diabetes math together. Based on nutritional information presented, solve the following problems. Show your work.
1. How many grams of carbs are in each popped cup?
2. How many grams of carbs are in one bag of popped popcorn?
3. If you estimate 17g of carbs for entire popped bag, and your insulin to car ration is 1 unit per each 4.2 carbs, what’s the total amount of insulin needed to cover all 17g?
4. Based on your answer to #2, how many units of insulin should you have actually given?
5. In a short paragraph, describe why blood sugar was nearly 400. Bonus: what prevented it from being even worse?
6. Explain WHY the heck Costco had to make this so complicated? Bonus points will be awarded for creative responses and GIFs.
Quick backstory: V went to hang out to a friend’s house and ended up with BG of nearly 400. She swore to me she counted carbs accurately. One of the thing she had was some popcorn. A couple of days later she made same popcorn. Out of pure curiosity I looked at the nutrition label. My brain broke.
Intuitively I knew that V miscalculated carbs big time. But by how much? The accurate carb count was eluding me. How many carbs per cup? How many cups in each bag? Normally we are pros at counting carbs. This labeling had me thoroughly stumped. After thinking it through some more and asking around, it’s only fair that I give you my answer key to the problem.
The column on the right clearly states that each popped cup contains 3 g. of carbs. This, I think, is a lie. Rule of thumb has always been count 5 g. of carbs per each popped cup of popcorn. There’s nothing in this popcorn that would make it lower in carbs. I don’t know who is the ultimate authority on popcorn nutrition facts, but even this pro-popcorn website, which clearly paints it as God-sent food, gives each popped cup a 6 g. count.
Since there are 2.5 servings per bag, and one serving makes 5.5 cups, that’s 13.75 cups X 3 g per cup, which is 41.25 g in one bag. Alternatively, per left column, 17 g. in each serving times 2.5 = 42.5 g. per bag. Close enough. Except if we use the rule of thumb carb count, then we get 68.75g per bag, which is a hugely different.
Best on the 17 g. estimate, 17 divided by 4.2 = 4.05 units of insulin.
Best case scenario, V underestimated by a whopping 24.25 carbs. 41.25 divided by 4.2 = 9.8 units of insulin. More than double (!!!) than what she gave herself. Worst case scenario, if we use 5 g. per popped cup count, then she should have given 16.6 units of insulin for the whole bag.
V’s blood sugar was nearly 400 because due to confusing labeling she did not count her carbs correctly and gave herself far less insulin than she actually needed. (Fun fact: popcorn used to be “free food”. When V’s carb rations were 1:15, it meant that she could have one cup of popcorn without needing to give insulin. Those days are gone, gone, gone.) Now, for bonus points, why it wasn’t even worse.
Loop! Loop predicted a much higher BG based on what was actually happening and tried to hold it back with a bucket worth of basal insulin.
The serving size does not appear to be correct either. For the sake of science and not having anything to do with wanting to eat some popcorn, I popped a bag tonight. Using crude measuring tools such as a measuring cup and a big bowl, I transferred popcorn out of the bag into the bowl one cup at a time. I counted roughly 9-10 cups. Nowhere near 13.75. So perhaps V’s carb count was slightly less off.
As to question 6, beats me! But here’s a very relevant meme. Now, give me ALL the bonus points!
What every T1’s fridge butter compartment should look like:
A thing of beauty
What we won’t be doing again: signing up for auto-refills, because for some reason they box is into a rigid 90-day refill schedule. If we refill manually we can do it after about 70 days.
What no one should ever be faced with: a ridiculous retail price of insulin. This is so wrong. Thank goodness we have GOOD insurance.
This is gonna be close. Next refill is on 12/8. One vial was opened today, not pictured. There is one more at school. And this last one in the fridge.
V has been going through ridiculous amounts of insulin. Puberty is largely to blame for her skyrocketing insulin needs. Add to it sometimes forgetting to bolus, which results in being stuck on high BG, which then takes even more insulin to bring down. Add hormonal surges when insulin is like water for a couple of days. Her insulin prescription was increased last time (to from 9 to 12 vials per 90 days!!!) because we were dangerously close to running out. Oh, and a couple of months ago she dropped a nearly full vial and it shattered. First time it ever happened! So now we have one less vial than we were supposed to and it’s making me feel increasingly uneasy.
This is new territory for us. We always had at least one or two unopened vials before refilling prescription. We always had a bit of a cushion. We should be ok. If I’m doing my math correctly. If she doesn’t drop another vial. If she is more mindful about bolusing on time. If hormones semi-cooperate for the next couple of weeks.
If it looks like we will be running out before refill is available I’ll reach out to the Endo. I’m sure we will find a solution and make it work somehow. But in the meantime it’s making me very, very uneasy.
November is diabetes awareness month. I blogged every day in November in past years. I don’t have it in me to do it this year but it’s a good reasons to at least write something here and there.
So, looping… For those who don’t know, looping is a DIY system created by a few genius T1 peeps and parents, that allows a small device called Riley Link to establish communication between insulin pump and CGM, so that it can automatically adjust basal insulin based on CGM trends. You gotta do a bit of work. I needed to do very basic coding, following amazingly detailed instructions, and built an app that loaded on V’s phone. Now instead of using her pump’s remote control she uses the phone app.
This is the set up with phone app and Riley link
I’ve waited for a long time for Loop to be compatible with Omnipod, so when it happened late spring we quickly jumped in.
Now, some loopers have amazing results. Their BG stays almost a flat line no matter what they do. But it takes a lot of work and dedication to dial in all the settings first. And it helps when people have predictive schedules and eating habits, and lean toward lower-carb diet. With a teen, we have chaotic schedule, higher carb diet, and stupid puberty hormones that constantly mess things up. Besides, teen’s cooperation to test settings is required. It’s easy enough to test overnight basal rates. But everything else that requires, during waking hours, either fasting and/or very careful and methodical consumption of exactly measured carbs to observe BG response to insulin, good luck!
Actual footage of my teen when I ask her to test settings
So, when we started looping I was aiming for two things: better and consistent control at night and decrease of burden. Improved A1C would be a bonus but not necessarily required, since it was already reasonable. I was not dreaming of straight lines. Good thing I wasn’t because we aren’t getting any! But we are getting the two primary goals accomplished.
Most nights are great. V stays and wakes up in reasonable range. Highs and lows still happen, but they are less frequent and less severe. We all are sleeping a lot better!
Last night’s graph. Started with a low that was caused by over-correcting earlier, but bounced back nicely and stayed in range all night.
V spends less time thinking about diabetes because Loop does a lot or work for her. When it predicts a low, it reduces or shuts off basal insulin, so it often results in “soft landing” in the 70’s or 60’s and then back to target range without needing to treat.
Loop has been suspending insulin for a while, so a bad low was avoided and BG recovered nicely by itself.
When V forgets to bolus (which happens more than I’d care to see), Loop tries to compensate with extra basal. What would easily be 400-500 BG without loop becomes 300’s.
Busted! Didn’t bolus till 1 hr after the meal. Loop working hard to compensate.
Still bad but much less bad and easier to get under control. Plus V loves using the phone instead of the clunky PDM.
And her A1C dropped 4 points without putting any more effort into Diabetes management. Sweet bonus.
So, no flat lines for us, especially during the day. But we are still better off with Loop than without it. And V’s endo is very supportive.
T1D and Gluten-Free 