Five Years of T1D

5/22/18 marked five years since T1D diagnosis. It’s hard to believe that five years have already done by. In five years, our family turned into T1D (and gluten-free) pros. So this Diaversary was a cause for celebration of living well with and despite T1D and Celiac.

The morning of 5/22/18 started with a breakfast complete with a heart-felt whipped cream message, and V sporting her new awesome T-shirt. Pop quiz: Who can tell me what the T-shirt design means?

V wanted to mark the day by getting a treat from Starbucks. Unfortunately it was thwarted by diabetes…

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The trip had to be postponed until the following morning. But fear not, V got to check off her bucket list wish of showing up to school with a cup of Starbucks in hand.

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Then the following day came V’s quarterly Endocrinology appointment. I was curious about her A1C. Her meter and Dexcom readings were suggesting improvements. I was also curious about some other goals that V was working really hard on. When V’s endocrinologist walked into the exam room, she was practically beaming at us. She was so pleased with everything. As she was gushing praise on V for doing a great job, I tried to peek at the paper in her hand with A1C result scribbled on it. Since I was looking at it sideways and upside down, I decided that I was not seeing it right. I didn’t believe it until the Endo announced it. 6.8! V’s best A1C ever!!!

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Better yet, the Endo was also pleased with the range of V’s numbers, which is a different way of measuring quality of BG rather than only looking at the average. And there has been progress with the other goals V had been working on. In other words, success on all fronts!

The Endo suggested that we really ought to celebrate, and who are we to go against medical advice? A couple of days latter we hit our favorite breakfast joint, where V feasted on amazing gluten-free Cinnamon Roll pancakes. 100% bolus-worthy!

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As V’s Diaversary Fest was wrapping up, we decided to update our T1D and GF family photo, with all four of us wearing our matching amazing T-shirts.

 

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So, FU T1D! Here’s to 5 years of kicking its butt, and may V have her entire lifetime of living well with it!

(P.S. If you still don’t know what the T-shirt means, please guess in comments!)

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ROIT1D 3 of 3

Early in the year, I made a commitment to run three half-marathons and fundraise for Riding on Insulin. I wrote about it herehere and here.

On November 12th I fulfilled my racing and fundraising commitments by completing my third half-marathon and reaching my fundraising minimum.

This was one of my favorite races. It was extremely well-organized and the course was absolutely gorgeous. Even though it was mostly downhill, I did not set a PR (Personal Record). Because, well, true to my running hat, I run like the winded. But it meant so much to me to complete it and have my family celebrate with me at the end. This one was for V and for all other T1Ds who live their lives fully and don’t allow diabetes to stop them from doing what they love.

Thank you ROI for providing inspiration for me and our entire family!

Within Goal

Stay within the lines, the lines are your friend… Screw that, says diabetes…

Our lines are between 70 and 150. We try to beat diabetes into submission by forcing BG to fit between the two lines. Now, this range is rather arbitrary. 70 is fairly standard, as that’s usually the bottom normal for people without diabetes. Some people with diabetes actually feel pretty lousy in the 70’s, so they may shoot for a higher bottom target. V feels excellent in the 70’s, so unless she’s going down or running around/being active, we are perfectly happy there. 150 is a total crapshoot. People with functioning pancreases hardly ever get BG above 120, and that’s usually after consuming a massive amount of carbs. For us, getting through a day without going over 150 is almost unprecedented. It usually happens when V has some sort of GI upset, which makes her run low. So that’s not anything to celebrate or be proud of.

But rarely, very rarely, magic happens. (Full disclosure: we are going to pretend a little here, because at 11:30 V actually dropped below 70. However, my day ended at 11 and, after I snapped the photo below, I fell soundly asleep as soon as I hit the pillow. I did not even hear Dexcom alarm. Hubs got up to handle V’s BG while I blissfully slept through it all.) So, for all I care, March 19th was a perfect day with V’s BG staying within the lines.

Within goal: 100%

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Diabetes Awareness Month, Day 27

I am pleased to report that this year we nailed Thanksgiving. It started with turkey. For so many years we kept over-cooking it. This year, with the help of a good meat thermometer, a LOT of butter, and more accurate info on when to pull the bird out of the oven, we ended up with a perfectly moist turkey cooked to perfection – dark meat and white meat. Nothing was over cooked and only a minuscule part was slightly over-cooked. Success!

But more importantly, we must have dialed up just enough magic to figure out carbs and insulin. It was very timely that I saw this article on diabetes and thanksgiving  in the morning and immediately decided that I was going to use the tips. Because we are not afraid of insulin, no we are not!

At the heart of Scott’s strategy was this philosophy:

I have two steadfast rules about managing my daughter’s type 1 diabetes. Read them, memorize them, live by them.

1. It is far easier to stop a low or falling blood glucose then it is to return a high blood sugar to a safe range. In my experience most low or falling BGs can be stopped and steadied in a short amount of time, maybe 15 minutes. A high BG can take 3 to 5 hours to return to a safe place. I’ll say it again. It is easier to stop a fall or a low then it is to effect a high. This thought guides everything I do with insulin.

I can’t stress enough how much it resonated with me. And yet times and times again we’ve found ourselves acting way too cautiously, fearing lows, not using our CGM to keep better tabs on BG trends. NO MORE.

Last night I checked V over an hour before dinner and gave her a correction to bring her to a lower range. Then I looked at our menu and honestly calculated carbs. In fact, I decided to round up and assume that high-fat things will be metabolized as glucose, so that virtually nothing was carb-free. I did the math and decided that 100 g. was a good ball-park number.

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I gave V her dinner bolus at least 3o min before dinner. She got 30% of insulin upfront and 70% spread out over 2 hrs, so that there would be active insulin in her system when all the delayed carb absorption started to happen.

The results were amazing. V’s BG stayed relatively steady. At some point after dinner and dessert I noticed that CGM was saying 91 and going down, so I let her have a small piece of candy. We had no lows and her BG topped at a little under 180! For us it is quite remarkable. Things were OK overnight, too. I gave V a small correction bolus before bedtime, and even though BG climbed up a little overnight, it again topped at 188. Typically, we’d be battling 200’s and 300’s and it was great to see V stay in a much better range.

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Now, this is definitely something to be thankful for!

Diabetes Awareness Month, Day 26

Today is Thanksgiving. Everyone is writing about what they are thankful for. I thought about it, but frankly I had already talked a lot about it. And don’t even get me started on what good things come from diabetes. Nothing good comes from diabetes. NOTHING. Yeah, you can adapt a healthier life style and blah blah blah, but I’d love to do it without diabetes thankyouverymuch.

That being said, I was pondering all this on my run this morning. This year I’m thankful for something we did not really have a year or two ago: little by little, we are getting our freedom back, despite diabetes. Now that we are 2.5 years into it, and are armed with experience, good support system, a pump, and a CGM, we can not only do more than before but relax into it. Last night V had a sleepover at a friend’s house. We were able to monitor her BG thanks to Dexcom Share and she had a perfect night and a great day. We barely had any contact with her, she managed diabetes on her own and did a wonderful job. V had sleepovers before but they were a lot more stressful and needed a lot more involvement from us. Same thing happened when V spent a couple of days and nights with her grandparents a couple of days ago. We stayed in frequent contact but things went much smoother than before, and it was a lot less stressful.

As I think about the past few months, more examples come to mind: V being able to have a run of the cruise ship without us…Getting away for a couple of days with my husband while V was in sleep-away camp…Letting V sleep in and rest home by herself when she had a cold and could not go to school, while I drove her brother to school in the morning…Being able to leave V home alone for a couple of hours and not drag her around with me when I had to run errands… Being able to let V stay home while I go for a run…

As I ran this morning, I remarked how wonderful it felt to enjoy our freedom. This is a win-win. Yes, it’s tremendously helpful to us, parents. But V is getting older and is at the age of wanting to be more and more independent, doing more things with friends and without parental supervision. I am grateful that we can make it happen and allow her to do all these normal things kids her age do. And I am grateful that we can breathe a little easier while letting her spread her wings.

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Diabetes Awareness Month, Day 6

Cross-posting from Facebook:

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It’s late, I’m tired and need to get to bed, so I will make this short and sweet. V had her Endo appointment today and her A1C is back to 7.0, down from 7.5. I knew her A1C would be better this time than 3 months ago but it was way better than I expected. And we heard the words “fabulous” and “great control” come out the Endo’s mouth. Happy Day! I’m totally using the occasion to recycle a photo from an old blog post.

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Behind the scenes of a brag

A few weeks ago I posted this bragging picture on Twitter

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I was very pleased with how we rocked BG management during V’s swim team practice, when she’s prone to going low. On a surface, it took a few simple steps: check BG, tweak insulin dosage a little and give her a snack. But come backstage with me. I will give you an exclusive tour of what it took on that particular day to get such a stellar outcome.

4:30 PM

I pick up V from school and we are driving to the YMCA. She checks her BG; it’s 216. “The pump recommends 1.65 units of insulin for correction”, she says. I mull it over and we talk about options. V is hungry and she typically has a snack before swim – usually a protein bar. If she boluses for her snack, she will have a lot of active insulin in her body when she is swimming and she will definitely go low. If she does not bolus for a snack, she may get too high and stay high. We haven’t yet pinpointed exactly what the threshold is.

I ask V to check if she already has any insulin onboard (active insulin in her body from a previous dose). She checks her pump and says that she does not. I ask her to look at her CGM and tell me what the trend is. CGM tells us BG is holding steady.

“What are you going to eat?” Normally I pack something but that day I completely forgot. I offer to buy her something when we get to the YMCA.

“Chips!”

“Yeah, right. No way. You need to have something that’s a mix of carbs and protein. How about chocolate milk?”

After some back and forth we settle on a yogurt, which is about 20-25g. of carbs.

“OK, let’s do this. Give yourself 1 unit. Don’t bolus for a snack.”

“But the pump says 1.65 units.”

“No, give 1 unit only. One unit brings you down about 60 points. (This is knows as correction factor and is different for every individual; V’s happens to be 60 points to one unit of insulin.) 216-60 = 156. It would be great to stabilize you there. The snack should help sustain your BG during exercise.”

V gives herself 1 unit of insulin and we keep on driving.

This is how the pump calculates the amount of insulin for correction

This is how the pump calculates the amount of insulin for correction: Current BG  minus target BG divided by correction factor. 

4:55 PM

We are at the YMCA. V quickly eats her snack. I glance at the CGM, she is still around 200 and steady. I have a spidey sense about it, I know she will go low even if she had a snack. I temporarily cut her basal (background) insulin rate by half for an hour.

5:00 PM

V starts her swim team practice.

5:30 PM

A routine check half-way through her practice. She is 98. Not bad but not great. Think about it: she started at about 200 and had a good snack. Half an hour later she is 100 points lower. She has 30 more minutes of intense practice and another 30 minutes of a private lesson. I give her a couple of glucose tabs to prevent her from dropping.

6:30 PM

V is done and wants to take a shower. She tests and is 82. Not bad. However, she says she is feeling borderline low. Or maybe she is really tired after 1.5 hrs of intense swimming? I ask her to sit it out for 15 minutes and re-test, and I have a spidey sense that her BG will level out and be OK.

6:45 PM

V says she is feeling well. She tests and gets a 53. What? Re-test, and now she is 85. We deem it to be an accurate number and I clear her to get in the shower.

7:00 PM

V gets out of the shower and CGM displays a perfect 100! She gets dressed and we head home.

Perfection!

Perfection!

7:40 PM

V tests before dinner. 103. We win at diabetes for once!

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V proudly displays her ribbons after her first ever swim meet. Our BG management during that day is a whole different story and does not deserve any ribbons.