Princess Punk needs a wake-up call

We saw Princess Punk’s endocrinologist and psychiatrist last week. Her Hemoglobin A1c, a test that gives an average blood sugar for the past 3 months has been creeping up all summer. 2 months ago it was 8.9 (which translates to an average blood sugar of about 200) and last week it was 9.2 (roughly 220). Obviously, this is not a good thing. When we saw her doctor 2 months ago, we were both chastised; her for being non-compliant, and me for not monitoring her better. Looking at a summary report downloaded from her insulin pump, it was VERY clear she had not been checking her blood sugar as often as she should and she was frequently not covering the food she was eating with a bolus of insulin. Unfortunately, this means that although her blood sugars ranged mostly from about 140 to over 500, there was no way to adjust the amount of insulin she was getting because the doctor didn’t know if that 562 at 4pm was because her insulin dosage wasn’t right or because she ate a cookie and didn’t bolus.

Say the doc goes by the numbers and changes the lunchtime bolus from 1 unit of insulin to every 8 grams of carbohydrates eaten to maybe 1 unit of insulin to every 6 grams of carbohydrates eaten. Doesn’t seem like a big change right? But say that 562 that The Princess had was because she hadn’t had ANY insulin at all. Then she “remembers” to bolus at lunch with the updated ratios and all of a sudden her blood sugar takes a nose dive and she ends up unconscious because now she has too much insulin. Confused yet? Welcome to my life.

Anyway. Doc tells us that if we can’t get our shit together and make sure she is testing her blood sugar regularly and covering what she eats with the right amount of insulin, Princess Punk will have to be admitted to the hospital for a week so she can be monitored 24/7 so her dosages can be adjusted correctly. Actually, what she said was, “Do you vant to go downstairz and be admitted now or should ve vait for a month and see if ve can get zis under better control? Becauze right now I can do nuhzing vith zis.” Princess Punk’s endocrinologist is a young, petite woman of some sort of slavic origin who has a body that I am simultaneously jealous and appreciative of. Sidetracked… Anyway, I left the clinic feeling like a total failure as a parent and concerned and upset that my (big) little girl is facing some major problems if we don’t get this under control soon. I’m talking kidney dialysis in her 20’s kind of problems. When we returned last week, terrified that we weren’t going to actually be able to leave, Dr. Hottie said her compliance was slightly better and she had enough information to make some tweaks to start getting this kid’s blood sugar under control. We are to return in 6 weeks to review and recheck HgA1c to see if it has improved at all. If it continues to go up, Dr. Hottie will be hospitalizing Princess Punk.

And when we met with her psychiatrist the following day, he suggested we look into behavioral therapy. Which would require us driving to Burlington at least every other week for sessions. Because we don’t have enough doctor appointments to go to.

On the way to the car, Princess Punk said,

“I’m tired of having to see all these different people. I don’t like talking to them, they’re grown-ups. Ugh.”

Me too kiddo.

And just to really drive it home how much this sucks, we went to dinner at Texas Roadhouse and when we asked for a copy of the nutritional information, the waitress looked at us like we were retarded.

“The calorie info is printed right there on the menu.”

“Yes, but we need the carbohydrate count. So we need the nutrition info.”

“Um… We don’t have that.”

“I’m sure you have something, somewhere. I’m sure people don’t ask for it very often but we really need it.”

(now she’s getting snippy) “I’ll go ask my manager.”

Manager comes to the table…

” I understand you are asking for the nutrition information? We don’t have that available. As you can see, the calorie count is right on the menu.”

“Yes, I can see that. Unfortunately, that’s not really helpful since we need to know how much carbohydrates are in the kid’s rib basket because my daughter has diabetes and we need to know how much insulin to give her.”

“Oh. I can understand that.” Really? Could you? Somehow I doubt it “Let me see if I can find it online for you.”

“No, I’m sorry, I couldn’t find it online anywhere. I agree, we probably should have that information available.” (REALLY? Nooooo)

And that was it… Aside from a rather fake-looking “I’m sorry” face and then a complete avoidance of eye contact we didn’t get anything else from the manager. The waitress looked alternately annoyed and full of pity. I don’t know which pissed me off more. I spent a good portion of the meal trying not to cry.

I shouldn’t have to tell a complete stranger that my daughter has diabetes. Ok. I mean most of you reading this are complete strangers but I mean why should I have to announce to a restaurant manager and his pissy waitress that my daughter has a chronic disease?  Princess Punk is self-conscious enough. IT’S NOT THEIR FUCKING BUSINESS. And why should I be made to feel like I have to justify why we need to know the goddamn carbohydrate count on some friggin ribs? Like we’ve put our 12-year-old on the Atkins diet and are trying to keep her under 30 grams of carbs for that 2-week startup phase.

Fuck you. Really. And Fuck you too Diabetes, you suck.

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2 Comments (+add yours?)

  1. filltheirbellies
    Aug 27, 2012 @ 09:45:41

    Agreed. F*** You Diabetes. Hey, don’t beat yourself up over her numbers. All you can do is your best. Did your Dr (whom I kinda wanna p***y punch for horrible bed side manner) mention that puberty is the WORST time for a type 1. That numbers, even under the best circumstances, are totally out if wack. That your daughters possible rebellion of her disease is totally the norm at this age and then let you know your not alone and MANY teens (preteens too) struggle at this point. I understand the struggle, sorry it sucks ass!!!!

    Reply

    • newlifeinvermont
      Aug 27, 2012 @ 17:19:50

      Honestly, Dr. Hottie’s bedside manner is very good, and a good match for Princess Punk. I regret if I made it sound otherwise. She’s matter-of-fact without being an asshole about it and generally directs her conversation and questions to The Princess and not to me which I think makes PP feel more empowered about the situation. I’m incredibly impressed with the endocrinology team at the hospital and I have been from the beginning. They know their shit and they really coordinate care so when we have a problem like this one, we can get the help we need to solve it. Yeah, we do know all the crazy crap about hormonal interference and how whucktackular that will make her blood sugar, but unfortunately at the moment, we have no idea if that’s the culprit since the kiddo is not keeping track like she should. The doc is pretty clear about making a distinction between the fact that this is an unpredictable disease, especially in girls her age and the fact that in order to manage it the best we can, it requires ALL of us, especially her, to take responsibility for her health. It IS a shitty thing to place on the shoulders of a 12 year old and it IS way more responsibility than she should have to deal with but unfortunately… That’s the nature of the beast. My post tonight is a pretty good indication of the shit we are dealing with right now. It is extremely frustrating. I hope you have an easier time with your boys, hopefully, by the time they hit this age, it’ll be old hat and it won’t be as much of a big deal as it is to Princess Punk who was diagnosed later.

      Reply

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