Diabetes Blog Week Tuesday: Keep It To Yourself

Many of us share lots of aspects of our diabetes lives online for the world to see. What are some of the aspects of diabetes that you choose to keep private from the internet? Or from your family and friends? Why is it important to keep it to yourself? (This is not an attempt to get you out of your comfort zone. There is no need to elaborate or tell personal stories related to these aspects. Simply let us know what kinds of stories we will never hear you tell, and why you won’t tell them.)

One thing I don’t talk about is not really because I want to keep it private, but rather because I do not want to spend my time and energy discussing a topic that is not particularly relevant to our family, while it matters a great deal to others. So, here goes…

There is a debate in the DOC (diabetes online community) about the term “diabetic”. Some people are very passionate about it. They say that it carries a lot of negative stigma and feel that calling someone diabetic is akin to negatively labeling them. They argue that a person is more than their illness and should not be labeled as their illness. They prefer a term “Person With Diabetes” (or PWD).

I agree that no one should be labeled by their illness, or by anything, for that matter. I also agree that people should be addressed in the way they prefer. And I rather like PWD acronym – it comes it handy. But here is where my – and my T1D’s opinion – differs. We are completely fine with the word “diabetic”. I feel it is no more labeling than calling my daughter a student. Or a girl. Or a stinker. (OK, she may object to stinker, so I’ll back off that one.) She is all of those and some more. There is not a single word that defines her, nor does she define herself by any single word or label. She has diabetes and she is diabetic. (She also has celiac but for some reason I don’t hear anyone say “I am celiac” as they would say “I am diabetic”. Why is that?)

I noticed that I started defaulting to the term PWD when referring to/addressing people who have diabetes, until I know if they have a preference. I think it’s a sensible and respectful thing to do. That being said, I will not further weigh in on the debate because it has little relevance to us. In meantime, feel free to call my daughter diabetic. Just don’t call her a stinker – leave it up to me 😉

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Diabetes Blog Week Monday – I Can

Today is the start of the Diabetes Blog Week. I will be posting about a different diabetes-related topic for 7 days in a row. Click here to see the topics and here to see all participating bloggers. Check us out!

Today’s topic is I Can: What have you or your loved one accomplished, despite having diabetes, that you weren’t sure you could?  Or what have you done that you’ve been particularly proud of?  Or what good thing has diabetes brought into your life? 

She can…

…play sports and play hard. BMX, swimming, gymnastics, running, mountain biking, and more – she’s doing it all and diabetes does not stop her.

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…eat sugar. I know, I know…  I will say no more. Couldn’t help it.

…have a sleepover at a friend’s house without us. It takes some planning and teamwork but it’s getting easier as she is more independent and we have better technology.

…feel and act like a normal kid more often than not. Some of it is because after a while you get used to diabetes care, it becomes second nature and gets incorporated into the new normal routine. Some of it is because there is so much more to life than diabetes. It does not always take center stage and sometimes it’s not on the stage at all.

…give an expert lecture on physiology of broken pancreas and speak in code that only other D-peeps will understand. Last year she did a presentation on diabetes for her class together with the school nurse, in Spanish.

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…give shots like the boss. Change the pod and Dexcom sensor like the boss. Count carbs like the boss. She is a diabadass.

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…be herself. Diabetes makes her a diabadass but does not change who she is.

I can…

…blog like the boss. Because when life gives you lemons, you don’t make lemonade. There’s way too much sugar in lemonade. You start a blog instead! What a perfect way to channel pent-up sarcasm and connect with other diabadasses in the diabetes online community.

…occasionally sleep through Dexcom alarms. Normally I am hyper-aware of Dexcom but once in a while exhaustion takes over and I hear nothing. How’s that a good thing? Simple – it gets me an uninterrupted night of sleep. (Don’t worry, hubby takes care of V while I am blissfully snoring through it all.)

…use sophisticated medical vocabulary. Postprandial, ketoacidosis and lypohypertrophy easily roll off my tongue. OK, maybe not lypohypertrophy. I’m still practicing pronouncing that one. However, I know what it means and I am getting better at spelling it, so it counts, right?

…keep up with diabetes science and technology. In fact, I find it fascinating and cannot get enough of it. I want to learn anything and everything that comes my way.

We can…

…be a diabadass family. We stick together and kick T1D’s butt together.

…eat well and live well. V’s diagnosis strengthened our commitment to balanced eating and healthy, active lifestyle.

…laugh at it all. Because if you can’t laugh at it, what good is it?

Welcome to Celiac, bring your own cupcake.

At V’s B-day party a few days ago I was chatting with a friend about her kids’ upcoming b-day party, to which V is invited to. “Oh, by the way, I’ve been meaning to ask you. What should I do for Victoria? I’m getting gluten-free pizza, we’ll have some fruit, and…” she hesitated for a second and I knew what it was about. “This is perfect” – I said – “And I will bring a cupcake for her.”

May is Celiac awareness month. I’ve been spending a lot of time here writing about diabetes. Truth is, Celiac often takes backseat to diabetes but once in a while it deserves its time under the sun. The combination of diabetes and celiac makes parties – especially birthday parties – the bane of our existence. We can’t just show up. We must talk to the host, figure out what kind of food is being served, and make sure that we bring something for V if gluten-free options are limited/not available. We certainly do not expect anyone to provide a GF meal or cake just because V is coming over. At the same time, have you noticed how most parties are glutenous feasts? Pizza, cake, sandwiches, all filled with lots and lots of gluten. And carbs, of course.

Luckily it’s easy to find gluten-free pizza and cupcakes nowadays. I’m not much of a baker, so I am thankful for being able to stop at Trader Joe’s and pick up a 4-pack of GF cupcakes that taste good and do not cost an arm and a leg. (If you ever pay attention to the prices of GF foods, you sometimes wonder if they use magical unicorn hair in the ingredients, because the prices can be quite astronomical.) V often shows up to a party with her own pizza and/or cupcake. She is a real trooper. I don’t know what it must be like for her to watch everyone eat everything she used to love but can no longer have. We try our best to find good substitutes, and for the most part we find some really good-tasting gluten-free stuff, but yet it stings.

For V’s own B-day parties I follow one simple rule: everything is gluten-free. I want her to have at least one day in a year when we say yes to everything. Crackers? Go ahead! Pizza? Sure, how many slices? Cake? Coming up! We’ve served GF sandwiches, cold cuts and crackers, pizza, and of course cake. Those more skilled at baking can create fantastic cakes from GF flour mixes. Me, I am mildly terrified of baking, so I take the easy way out. There are many GF mixes available and they taste really good. I’m surprised at how much all other kids enjoy our GF parties. In fact, this year V had a joint party with her friend. When coordinating the party with friend’s Mom, I suggested that she can bring a regular cake and I will bring a GF one. The Mom asked if it was OK for both girls to have just one cake – the gluten-free one. Turns out her daughter had been raving about it from last year’s party, saying it was the best cake she’s ever eaten. I think she’s got a good point.

Betty Crocker gluten-free yellow cake mix, chocolate pudding filling. Bolus-worthy!

Betty Crocker gluten-free yellow cake mix, instant chocolate pudding filling. Bolus-worthy!

Sweet Success

Today was V’s follow up appointment with the Endocrinologist. Her A1C is down to 7.2, compared to 7.9 three months ago.

For three months, we kept our focus on the goal of tightening the control. It was a lot of work and often felt exhausting, overwhelming and futile. We fought through a GI virus and a strep throat. We battled persistent highs and conceded defeat at least once. We helped V hold her own while she was spending time at her grandparents’ house over break. We increased our diligence of carb counting, made several major adjustments to insulin dosing, and tried to stay on top of it all as best as we could. We lost many battles in the process but for the last three-months period we won the war. Take that, Diabeetus!

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