Refill accomplished

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.

The end of posting blitz…

…for now.

Today is last day of Diabetes Awareness Month. Wish I could say it’s the last day of diabetes. I hope you’ve become more aware. Unless of course you are living with diabetes, in which case you will remain as aware as ever. And if you were getting tired of diabetes posts every day, guess what? We are pretty tired of having to deal with it every day and we get to keep going after November is over.

I am pleased that I met my goal of posting every single day, even though there were a few close calls. Getting the app helped a lot. Hopefully this means that I will be posting here on more regular basis. There are still a couple of posts simmering in my head, needing to be written.

Thank you for reading, commenting, following this blog, and helping us spread awareness!

What you won’t see

Not all lows are created equal. Sometimes the number is ridiculous but V barely feels it. Other times she’s in the 60s but scares the crap out of me when she wakes me up with this text in the middle of the night:

And then there is a video saved in my phone that may never see the light of day. We went to dinner with V’s swim teammates, parents and coaches. SWAGed the carbs and overestimated big time. On the way out of the restaurant V started to feel really low. We walked to the car to the soundtrack of blaring Dexcom alarms. I gave V some fast acting sugar and decided to wait it out until she was stable and feeling better. It was a long one and…interesting. If you didn’t know better, you’d think that I got my 13-year-old drunk. She was silly, giddy, giggly, goofy, and decidedly not her normal self. I’ve seen her act silly during a low before but this one was something else. So, after giving her some more fast acting sugar, I turned into that parent and started recording. She was acting like a happy drunk and at the same time she was feeling utterly crappy. We sat in the car for a while until her BG stabilized and went up, and she started to act more like herself.

I’m keeping the video for our own records. We talked about the importance of being very thoughtful about ever sharing it with anyone. There is a part of me that wishes I could share it, for the purpose of educating others about how easy it may be to mistake symptoms of hypoglycemia for intoxication. There is nothing inappropriate about it, but it feels really personal. So at least for now, it’s best to keep it for our eyes only.

The “before” picture

Happy to recycle

Last night as I was organizing some drawers, I stumbled across a few folders from the hospital. In them was a bunch of info and documents from the hospitalization when V got diagnosed with T1D and from her first Endo follow up visit. I have to give it to the hospital: they pulled out all the stops and gave us a ton of info and resources. There were even flyers for medical bracelets. And there was a folder from JDRF with a welcome letter that started out with “You are not alone.” They did it everything to set us ip for success. And it was with some amusement that I looked at the records of our follow up appointment. Initial A1C: 12.3. Uncontrolled diabetes. Possible Celiac (wish that didn’t change to “definite Celiac” a couple of months later.) And at the bottom of the page, there was our first sliding scale.

Yep, like many others, we started with the sliding scale, where we had three types of insulin, mixed two of them once a day into one shot, and had to stick to a fairly rigid meal schedule both time and carbs-wise. It was ok for the first couple of months and in some ways it was actually helpful because if gave us some structure and some concrete rules to follow. It also allowed us to not need an injection at lunchtime in school, which made things simpler. But as we gained more experience in diabetes management, it started to feel more and more forced. We felt like we were feeding to V’s insulin schedule instead of giving insulin to meet V’s needs.

We ditched the sliding scale a few months after diagnosis and never looked back. And last night, after looking over those papers from 2013, I was happy to recycle them. We’ve come a long way since V’s initial diagnosis and we keep moving forward.

Type 2 diabetes: the struggle is just as real

Why spend time talking about Type 2 on this Type 1 blog? Because it’s Diabetes Awareness Month, not T1D Awareness months. So many people live with T2 and they face some real challenges. In some ways they have it even harder than T1s. There’s so much misinformation, stigma, shame and blame. Ever noticed how diabetics seems to be the butt of everyone’s jokes? I decided to google “diabetes jokes” memes and these were one of the first ones that popped up.

Funny? Try living with T2 and then tell me how awesome it is to live in a world where everyone believes you are a lazy fat slob who brought an illness onto themselves by eating too much sugar.

Here’s a helpful article that talks about the real challenges of living with T2. Turns out T1s and T2s have a lot in common.

Chances are you know someone with T2D. And chances are there are more people around you who you don’t even realize have it because they are too embarrassed and keep it a secret. Let’s treat people with T2 diabetes with kindness and empathy they deserve.

It takes a village

Today, ok World Diabetes Day, I thought it would be fitting to talk about how many people help us make it work. I often hear stories of other PWDs and parents of T1 kids feeling alone. I am beyond grateful that from the moment V got diagnosed, we never felt alone or isolated.

When V was diagnosed and hospitalized, our friends and her friends came to visit and cheer her up.

Practicing doing shots at the hospital

Before she was even discharged, our amazing school nurse called us and helped us formulate a game plan. She was our strongest advocate and supporter as we learned to navigate how to manage T1D in school.

V’s teachers showed nothing but care and support and tried their best to accommodate her needs.

V’s friends are her cheerleaders and advocates. She is loved and accepted for who she is, with all of her dietary needs, medical supplies and robotic parts. They don’t flinch when she has to poke her fingers or do a shot. And their parents are also very supportive and accommodating. Many of them even welcome her for overnights, which includes helping her manage things at times, even at night.

Soon after V’s discharge I got a phone call from JDRF parent volunteer who checked in with me and connected us to a local network of T1D families. This gave us an opportunity to connect to others in real life and online. The group had been a tremendous source of support for our entire family. And V got to meet many other kids with T1D.

V and her diabestie!

Then we discovered DOC – Diabetes Online Community – where we learned so much more and met amazing people.

V’s endocrinologist rocks. Every single visit she takes time to address our questions and concerns without judgment and with lots of care and consideration.

We are so fortunate to have two local diabetes camps. V had been attending one or both every year since diagnosis.

Fun at diabetes camp!

Our family and friends have stood by us from day one. They may not understand all the intricacies of T1D management but they sincerely try. Many of them go out of their way to make sure V is always included and her needs are taken into consideration.

Love my tribe!

V’s swim coaches take great care of her. They remind her to test during practice, are calm and supportive is she has a bad hypo (like a 29!), and otherwise treat her no differently than any other teammate.

Living with T1D can be a lonely experience. We are so grateful for our village. Our hope is that as V is gets older she will continue to surround herself with supportive people. No one should go it alone.

Snapshot of our life

Just another morning. Unfinished cup of coffee waits for me as I assist with pod change. Diabetes paraphernalia everywhere on the table. Insulin vial. Sugar bowl close to it, lol! Two old pods. Why two? I can’t remember. Dog photobomb. He always photobombs, he’s an attention hog. It’s totally not normal and yet completely normal. This is our normal.

Diabetes Awareness Month Blitz

Oh hi there! I’m still around. You know, still thinking about all the blog posts swirling in my head and not making it into actual blog posts. Too bad telepathy doesn’t work. But…

I’ve decided to try a reboot and what can be a better opportunity than now, during Diabetes Awareness Month? To this end I am going to post something every day. Now, now, lower your expectations. By “post” I mean it can be just a photo, or a meme or a quote. I do have more

substantial things to write about as well. And I also finally went ahead and downloaded the app so I can post from my phone. My old trusty Mac is getting older and slower and less trusty.

I look forward to getting back to blogging. I’ve missed it. If there’s anything you’d like me to write about, please let me know in comments. I may also have Vic do a guest post. She’s 13 now (!!!) after all. She reads this blog and she has every right to contribute to it. If there’s anything you’d like her to write about, or make a video of, also please let me know in comments.

I’ll leave you with a photos of kids’ Halloween candy loot. Many parents dread the post-Halloween overabundance of candy. We welcome it. I consider it replenishment of fast acting sugars stash. Though I am a little disappointed to not see many smarties there. Hmm. Also, note the photobomb of Dexcom sensor boxes on the couch. I’ll talk about our G6 experience in one of the posts.

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!)

Sleepover: Behind The Scenes in 20 Screenshots

Sleepovers are the bane of my existence. It’s hard enough to manage T1D when V is sleeping a few feet away in her room. When she is elsewhere, we become the 24-hour on-call support and security center. Some nights are completely uneventful. Other nights we barely sleep. This is another invisible aspect of diabetes management, which most people are hardly aware of. I’m about to give you a little glimpse of what it takes to manage misbehaving BG when V is sleeping away from home.

V spent last night at her friend’s house. Before she got there, the daytime BG was fairly good. Trouble started brewing around dinner time.

So everything got back on track. Or so we thought, because at 9:52 PM…

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IOB = Insulin On Board, or amount of active insulin in her body.

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It pains me that I have to tell her to set the alarm to wake up in the middle of a night on a sleepover! What other kid has to do it? But it’s her life.
So at this point we have a plan and I am trying to get some sleep. When I open my eyes an hour later and check Dexcom, I do not like what I see, so I text V again:

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IMG_E5952.jpgI’m fighting to stay awake while doing complicated diabetes math. We need to override the pump and give more insulin because she is so high. But I don’t want to send her plummeting to a low either, especially because she is not at home!

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All that careful math, and still… She went from 400 to 225 with two arrows down in 45 minutes. And now she has a lot of active insulin in her body. Time for opposite action!

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So now it is about 1 AM. I have been sleeping poorly in 45 min increments, waking up to glance at Dexcom and make sure V is OK. I’m hoping that finally we can get things stabilized. I get to close my eyes for a couple of hrs. Then I wake up to Dexcom high alarm at 3:38 AM.

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Clearly something is not working with the pump. Absorption issue? Bubbles in the cannula? Who knows? It’s not completely useless, it’s obviously delivering some insulin, or else V’s BG would keep climbing even higher and higher. What we do know is that an injection of insulin can do wonders to bring BG into a better range. What we also do know, from the prior few hours, is that the same amount of insulin administered by the pump has been fairly useless. Understandably, V is not at all thrilled about my preferred course of action.

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V – if you are reading this, please realize that when this happens at home, I get up and give you a shot. And then I also change your pod. Usually you sleep through most of it. It sucks but it needs to be done.

I do not hesitate to put on my mean Mom hat. Also, by now we’ve been texting for nearly half an hour, it’s almost 4 fucking AM, and I have neither patience nor energy.

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I know V is really tired, mad at me, and in extra bad mood because her BG is so high. But for the record, what I really want to do is to launch into a tirade of how dare she does not appreciate how much I do for her. In all caps. But I know better because really, it is so, so hard on her. She may not believe me but I get it. So I suck it up and let her vent, try to keep my cool, and make sure everything is taken care of.

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At this point we both crash. When I wake up in the morning and check Dexcom, she’s OK. Not great, but somewhere around 200. Good enough.

By the way, the other bane of my existence is cropping and editing 20 screenshots. But if it helps you understand what we sometimes have to go through, it’s all worth it.

#makediabetesvisible