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!

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T1D and GF 101

V has a new math teacher this year. When my husband and I introduced ourselves at curriculum night in the beginning of the year, we mainly wanted to address some concerns we had regarding V’s learning. The teacher, however, had some really basic questions about V’s medical stuff and whether she would be sick a lot and miss many school days. It was clear that no one informed her of anything, even though V has a 504 plan and it should have been reviewed with her. When we got home, I sat down and composed a T1D and GF 101 email to help her better understand V’s needs.

Hello Ms. W,

It was nice meeting you this evening at curriculum night. We are hoping that this year will go better for V than last one. She did struggle with some material but also a big problem was her procrastination and lack of organization. We will monitor her grades and progress more closely this year and please let us know if you have any suggestions/recommendations on how to better support her.

In regards to her medical issues, let me just briefly explain them to you, as I see the school had done an outstanding job of giving you this important info. /sarcasm. 🙂

V has Type 1 Diabetes – an autoimmune disorder where the pancreas stops producing insulin. There is no known cause and there is no cure. She needs background insulin 24/7, as well as additional doses for any foods containing carbohydrates. She wears two devices. One is an insulin pump, another one is a continuous blood glucose monitor. Her pump (also called a pod) has a remote control which she uses to make dosing adjustments, give herself mealtime insulin, etc. While the pump delivers pre-programmed background insulin dosage 24/7, it does not “think” or “act” on its own, so V needs to enter her blood glucose and carbs data into the remote whenever she needs to make adjustments or deliver insulin dosage. She rotates her pump site every 2-3 days. She likes to wear pods her arms and legs, so they are often visible. Normally pump will be pretty silent, although you may hear quiet clicking form time to time  – it means insulin is being delivered. Once in a while, it may malfunction and then it will make quite the noise! We lovingly refer to it as “the song of its people.” Hopefully it won’t happen during class. At any rate, V has all the back-up equipment on her and in the health office and can address issues quickly and independently, you do not need to worry about it.

The other device – continuous blood glucose monitor (Dexcom), she usually wears where it is concealed by her clothing. It measures her blood glucose in real time and transmits the data to the app on her phone. This is the device that may make noise sometimes, to alert V if her blood glucose is low or high. If you hear police sirens or really loud beeps, it’s probably V and, for better or worse, no one is getting arrested. I’m sure she already explained to you that she may need to use her phone in class to monitor blood sugar. Dexcom gives V a break from having to poke her fingers to know her blood sugar, and a huge peace of mind because it alerts her to high and low blood sugars, so she can take quick action and stabilize it.

The funny thing is, managing diabetes requires a LOT of math. V should be an expert in ratios, division, multiplication, fractions, percentages, proportions, and some other math functions.  “Should” being the operative word here. As I’m typing this email, she’s reminding me “I suck at math, I hate math!” Followed by “I don’t hate math, I struggle in math.” Followed by ” I hope to get better.” Yes, there is hope!

V has a 504 plan in place. It contains some pretty basic accommodations, such as being able to use her phone during class ONLY for diabetes management purposes, testing her blood sugar before exams, being able to drink and eat and use the restroom as needed as it’s part of managing diabetes, etc. I will make a copy for you over the weekend. V is fully independent in managing diabetes and she is generally responsible and takes good care of herself.

V has another medical condition – Celiac – also an autoimmune disorder (because if you have one, why not have two! 😊 ), where her body cannot digest gluten – a protein found in wheat, barley and malt.  Ingesting any gluten leads to damage to the lining of small intestine. She is on a strict gluten free diet, and she is very good about sticking to it, reading labels, and being very careful to avoid gluten.

V can eat anything as long as it does not contain gluten (or poison 😊), including candy. She just needs to give herself insulin to cover the carbs.

Neither her devices, nor diabetes, nor Celiac, should interfere with attendance. V does tend to get sick a little more than average, and it may take her a little longer to recover from illness,  but it is not excessive. If for some reason we are facing unforeseen medical complications that may be impacting either her attendance or ability to do schoolwork, we will communicate it to you ASAP.

Thank you for taking the time to read the info and hopefully it is helpful. Please feel free to reach out to us if you have any questions or concerns or need more information/explanation.

We look forward to a great school year!

Respectfully,

Polina B

The teacher responded the next day thanking me for both the info and the sarcasm about not being informed. And now that I’ve written the letter, I will keep it handy for any other occasion when a basic explanation is in order.

Back to school: First day of 8th and 5th

Dude, where’s my insulin?

When I’m at work, I rarely pick up my phone. Too many robo-calls to begin with, and if someone really needs to reach me they can either text me or leave a voice mail. I only answer if I’m expecting a phone call or if it has a potential of being really important. For example, when I see a phone number from kids’ doctors, I pick up. And when I see a phone number originating at V’s school, I also pick up.

Several weeks ago, my phone went off and I recognized that it originated from V’s school.

V: “Hi Mom, it’s me. My pod got snagged during PE, so I came to the health office to change it, but my insulin is not here.”

Me:??? What do you mean it’s not there? It’s supposed to be in the fridge.

V: I know, but it’s not there. We looked everywhere. We tried to tape the pod down but it’s not working well.

Duuuuuuude. WTF?

V keeps a box with back-up pump supplies and a vial of insulin in the fridge in the health office in school because things happen. Pods fail sometimes, or they get ripped off. A brand-new vial of insulin was placed in the refrigerator. It was in the box. It had V’s name on it. Who would remove it and WHY?

I asked V to keep looking. This was around lunchtime. Me and my husband were both about 30 minutes away from school. That particular day I had a very busy schedule and could not leave work save a big emergency. I called my hubby and put him on standby, just in case.

V called back. The insulin was nowhere to be found. And lucky her, she’s the only diabetic at school right now, so they did not have anyone else’s insulin there either. V said that she thought the cannula was still in, and that she’d try to tape the pod again and make it work another few hours before school was over. We left at that, she gave herself a bolus, and I asked her to keep me posted.

In the next hour, her BG continued climb up – not an encouraging sign. V sent me a photo of her taped up pod and it was not pretty. Much as I did not want to admit game was over, it was sinking in.

I called my hubby again. Luckily he was able to leave work early, picked V up from school and took her home. Needless to say we were upset. But it’s never happened before. And we really like and have a good relationship with the health tech. So a simple email was in order:

Heath tech responded promptly

Good! I would want administration to know.

What do I think about putting a vial of insulin in a clearly marked container? Sure! This is what V delivered to health office on Monday.

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.

The price of staying alive

Here is our CVS receipt for insulin. V needs it to live, plain and simple. And thanks to puberty she needs a lot of it. The retail price of each vial is over $300. Retail price for V’s 3-months supply is nearly $3000. With insurance AND discount program from Novo Nordisk, our price goes down to $75. We are very fortunate to have decent insurance. This is fucked up.

T1D Adventures, Swim Team Edition

We hardly ever get weird/ignorant comments about diabetes, but I guess V’s number finally came up sometime in August. First, V almost got disqualified by an official for wearing a pod at a swim meet. According to the USA Swimming rules, swimmers cannot have anything attached to them. So one official took an issue with the pod on V’s arm. He first went to the coach, who tried to explain to him that it was an insulin pump. Then the coach had to pull V in, so that she could re-explain to the official what that thing attached to her arm was. The official asked if my daughter could take it off, to which she said “are you fucking kidding me” NO. He finally left her alone and let her swim.

I now have a screen cap of USA Swimming rules pertaining to swimwear saved in my phone. The rules do not forbid in any way, shape or form attachments of medical devices necessary for swimmer to, like, LIVE.  They are designed to prevent swimmers from wearing anything that would give them an advantage over others. I haven’t needed to throw the rulebook at any of the swim officials yet, but I’m prepared!

Then about a week after that meet, V was getting swim team photos taken. The photographer, upon noticing the pod on her arm, asker her if she wanted it to be photoshopped out. The conversation went something like this:

V: No, thank you.

Photographer: Are you sure?

V: Yes, it’s OK.

Photographer: Are you really sure? It’s bulky. I can photoshop it out for you.

V: No, it’s OK.

Photographer: I think your parents would want me to photoshop it out.

V: No, they are OK with it as is.

I was not around for either one of the events and only found out after the fact. But I am happy V advocated for herself, and I am even happier that she feels confident and not in the least self-conscious about her robot parts. Besides, if you ask me, I think the pod makes her look more badass. Or, I shall say diabadass!