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Changes: After the Diagnosis |
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You slowly pick up the pieces and start making sense of it all. I just had my appointment with our nurse, and I said to her, “What’s really hard for me is that I’m completely type A with a very black and white personality.” We’ve been having problems with his pump and I keep saying when his blood sugars are high, I’m not sure it’s high because the pump is not working the way it should or if I haven’t covered him enough or given him enough insulin. So, I struggle with that day-to-day, and I know that I can’t find the answer on the internet and that I can’t call a doctor and get a “Well, that’s happening because this is happening.” Every kid’s diabetes is different. It’s all different, so that’s what I struggle with day-to-day. I take thyroid medication for my thyroid. It’s one pill. I take it every morning, and that’s it. Diabetes isn’t like that. You can’t just take a dose of insulin and you’re fine and you can go ahead. It’s a constant juggling act no matter what you’re doing. -Mother We have more of a set schedule. Prior to the diagnosis, some nights we ate at 5 o’clock dinner or 5:30 or up to 6:00, 6:15 and now it’s more of a set schedule. So I notice that we are rushed more if we are at certain events. If we don’t bring the insulin we’ve got to come home by a certain time. But there have been positive traits as well. You know, we eat a lot healthier. All of us eat smaller portions; not the same as him, but smaller than we typically were in the past. -Father There are, of course, the regular doctor’s appointments and the daily hassles of blood sugar monitoring (sometimes in the middle of the night). There have also been occasional emergency runs to deliver diabetes supplies when our daughter has forgotten her “bag”. But on the whole, we have adjusted to having these things as part of our life and do not experience them as overwhelming or difficult to deal with. -Mother Becoming an educated comsumer of the healthcare system Beyond reminding my daughter to keep her supplies stocked and with her, a few extra doctor appointments, and middle of the night checks, I have not made any major life changes. I have spent some time reading everything that I can about diabetes and becoming and educated consumer of the healthcare system (and the insurance system). -Mother We tried not to make too many changes We tried not to make too many changes. We tried to let her live like a normal four year old at the time. She did have to do her shots and everything, but besides that, swapping up the diet a little bit, and taking it little by little. Now, it’s just like a daily routine for us. -Mother There is less time for us. I used to go to the gym three times a week. Now, I go once a week if I have time. I’m always tired because I have to check on him in the middle of the night. -Father We took Billy for a weekend. My husband, Charlie, is a doctor and would be home the whole time, so I thought the two of us concentrated on this would be better. But we fell into a pattern of just watching TV at night. While we were watching his diet, we kind of forgot about exercise. When Billy went home, he was very high and his parents were quite upset that he hadn’t exercised all weekend. Another time we took him, we were supposed to go to a Thai restaurant and order a special thing but Billy said it was fine for him to go to a Mexican restaurant instead and eat cheese and tortillas and he ate a lot of those little salty crackers that they give you and chips. He went home high again. We just weren’t into being careful enough. We didn’t realize that there wasn’t that much room for play and that you couldn’t sort of be casual. It took a long time for that to get through to us--how disciplined a casual person has to be in order to set the proper limits for a child. -Grandmother The changes are really pretty systemic in the sense that you really just have to change your entire mind set about what you're paying attention to. We are particularly strict with Billy about what he eats. We found that his blood sugar control is much better when he eats food that is nutritious and whole grain food. We try to avoid all fried food. We try to avoid white flour products, if possible and obviously high glycemic items. We’re not incredibly strict about it. High glycemic items that spike the blood sugars right away and become really nearly impossible to control, so unless you’ve had the foresight to give yourself a shot or if you’re on pump therapy, a bolus, 20 to 30 minutes ahead, which with a child is not easy to do. So our mindset has really become entirely different as we now have to be consciously aware of what’s going on with Billy. What exercise has he had, where is he, who he’s with, and what he’s eating. -Father
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Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. Updated: June 8, 2009 |
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