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The children have been dealing with ‘school issues’ the last couple of days — one positive, one negative. At M’s school, one boy said terrible things and behaved terribly — for two days — before the school caught up with him. Things about people with diabetes being ‘spastic’ and having no legs. He drew pictures, and taunted M. Needless to say, despite stay off the subject advice from us and from a teacher, by the second day of this, she flipped. It’s all been dealt with… but she feels these things deeply. She wishes more people understood. She wishes she didn’t always have to be in the position of explaining what diabetes is, the distinction between type 1 and type 2, how hard it is to manage, and how she worries about her brother…
It’s a bit much for a ten year old really.
By contrast, yesterday at school E’s physics teacher completely silenced similar taunting. This is a fairly common occurrence which E seems to weather well: boys tease him quite a bit about being diabetic, make fun of his pancreas, say hey he can’t have juice where’s my juice, etc. The distinction I guess between M and E”s situations are that in E’s case, the boys kind of know what’s going on. At M’s school, they are speaking from complete ignorance, and are therefore near bullying.
Anyway. Yesterday E had a hypo in physics, reached for juice. One boy said hey sir he can’t have that! To which the teacher responded yes he can, he’s diabetic. The same boy then said ha ha let’s all laugh at him because he’s diabetic. And the teacher, totally deadpan, said I don’t think that’s funny at all. My daughter is diabetic. I wouldn’t want her to go through what you’re doing to E, and I wouldn’t want E to go through what she does when she’s low.
Apparently the class just kind of froze; the whole atmosphere changed. The teacher is a favourite of E’s anyway. Turns out his (grown up) daughter was diagnosed just a few weeks ago. E came home feeling that someone understood.
That’s all it takes.
***
M and I talked alot yesterday about how when something like a diagnosis of diabetes happens in your family — it could be anything that marks out one of you as ‘different’ — people automatically read it as ‘not normal’. In fact, you yourself, until you get used to it, read it as ‘not normal’. And the difference weighs so heavily. You feel out of the stream of life, isolated, cast off. Difference of any sort is so very bulky to manage, trying to figure out what to do with it in your life.
Last night M said that ever since E’s diagnosis she’s been working hard to try not to pigeonhole people. She said that she used to be frightened of how different people looked in hospital, or on the street, in a shop. She used to be afraid of difference.
Perhaps we all are at first. But it’s not so difficult to change this. It’s not so difficult to expand our notions of what is ‘normal’. In truth, ‘normal’ can hold everything, every difference.
Our job I guess is to keep forcing people to expand, to open up. To educate. To push for acceptance at the deepest level. To keep people from turning away.
It’s not easy. But it needs doing badly. For all our children and their futures, whatever they may hold.
The absolutely LAST thing I have time for tonight is a post…but I feel determined not to let work get on top of me yet again. Especially after meeting Clare H (hello Clare!), a regular reader, in the gym yesterday. I’m thinking: do a post, do a post… And all the best for her daughter C’s move this week to a pump!
ANYWAY. All well here. Some weirdo numbers. Mostly too high. But not thousands. Just a few irritating ones. Pizza dual wave needs changing. Breaded chicken continues to be problematic. And spag bolognese is a pain in the bottom: the normal pasta dual wave is consistently a disaster with this; evidently the fat in the meat slowing things down. So E crashes. Treats hypo. Then hours later goes high.
Argh.
ANYWAY. Another fun one is that using the pump is SO automatic that last night it backfired the opposite way from usual: instead of forgetting to bolus for a meal, E accidentally bolused when he meant to have some free carb (eg without taking insulin to cover the carb content)! Ack. He hadn’t eaten all his meal, so needed to have some free carb to soak up the leftover insulin… Had a cereal bar, and automatically bolused for it. I realised too late, with a kind of weird retrospect, suddenly recalling the buzz from the pump of the dose delivering… an hour after. So in goes TWO boxes of juice (because the extra insulin in the meal still hadn’t been accounted for), and we’re in bed over an hour later than we wanted to be in order to see through this errant dose…
Sigh.
AND — as if life weren’t complicated enough (as ever), Cleo is beginning to pound the floorboards. Which can only mean one thing: the vet was wrong, and the breeder was right — she’s coming into season way before spring.
And Archie is obviously an adolescent. And you know they only want one thing…
Ack.
We’re thinking we’ll put her on the pill for a year or so — what do you think? A bit like when you have babies, it’s hard to stop having kittens…
With that: back to the coal face for me…
So the reason R was in Japan was to deliver a lecture and to have a piece performed. All of which he enjoyed a great deal, and which went well. Even the simultaneous translation bit, which must have been a remarkable experience…
So he receives a fee. In cash. Which necessitated him doing the most uncharacteristic thing of shopping. In order, you understand, not to end up losing lots to commission converting the currency back.
So he returns yesterday positively laden with gifts: some hand-painted small ceramic somethings — very beautiful, eight of them — a very finely worked inlaid wooden box, pashmina type scarves for M and me — again, so finely made, pure wool, so soft — a couple of small prints, a couple of Shinto good luck charms (‘traffic safety’!), a brilliant duty free watch for E (much needed), and a bit of duty free bling for me. Packets of rice crackers and rice sweets. As you do.
Every girl deserves some bling!
So last night the family was gripped not only by the presents, but also by the origami birds and asymmetrical wrapping lavished upon each gift. The classy ribbons, the display boxes. Even the stickers holding the ribbons in place and the bags closed were things of beauty somehow.
So none of this was particularly expensive. But the care of the presentation, the boxes and bags and tissue paper…is almost breath-taking, an experience in itself and unto itself. When straightening up, I could not bear to throw anything away, even the paper and said stickers. I put them in our ‘bag and wrapping’ drawer in the kitchen.
So how do we — us, the Japanese too — marry using so much paper with wastefulness, with recycling? And if I’m honest, with the almost cleansing aesthetic pleasure that the results, the process, bring?
However we slice it though: it’s so good to have R home.
***
Meanwhile E battles a long-lasting, dragging sore throat which began toward the end of hypo lane last week and is now gradually wearing him down. Probably the same one that kept his sister off school two days the week before. His levels are becoming quite irregular — 4.4 mmols yesterday morning, 17.5 mmols this morning! We are all just reacting — no choice — and he soldiers on. Has a Spanish assessment today. Doesn’t want to miss it.
Sigh. We correct and send him off to school on a 200% basal temp, fingers crossed he doesn’t crash.
And M has brought her stunningly beautiful inlaid box into school. Along with its wrapping paper. And the blue origami bird.
Okay, so I changed the evening ratio and the first night it was a DREAM. 6.1 mmols at bed, 4.8 mmols upon waking. Sigh of satisfied (and slightly smug) relief.
Things trot along fine yesterday, then, huh, too high before dinner, 11 mmols. End of dual wave pasta from lunch. E comments that it’s too high even for the end of a dual wave and that he thinks the changed dinner ratio will just make things worse. He wants to override the pump and give more insulin.
I resist. More than one day testing is our motto, and we just can’t tell how things are going to go.
So he was right (again). At bed he is 16 mmols. ARGH. Correct and test another hour later. 14 mmols. The pump will not correct again… and this morning he’s still too high, 10 mmols. Another argh. We correct, and when he gets up for breakfast, he’s fine, 7.3 mmols.
Then he forgets to take insulin for breakfast (SO easy to do). Which of course we don’t realise until testing for lunch, three hours later. When he discovers he’s 18 mmols. Triple that argh. We correct and put him on 200% (basal/background insulin). He’s massively apologetic, cross at himself. We also make the decision that he’s going to eat with us rather than put his food in the oven where it will become even crispier than it already is (remember, I’m ‘cooking’). This of course means that him coming down will take MUCH longer… more food going in means more for the body to deal with…
He does comfort himself/me though by mentioning that at least he won’t get ketones, because there is a LOAD of insulin running around his body by now…
Nothing like searching for the half full bit of the glass! Bless him.
It is stupidly easy to forget to bolus for a meal or snack. Reason being: when weighing, measuring, calculating become second nature, then it’s just a momentary lapse that results in skipping the final step — and because it’s such force of habit doing all this, you don’t even remember you’ve forgotten, if that makes sense. Until you stumble across it.
So now it’s three hours and three blood tests later and he’s 12 mmols. On the way down.
The next unknown will be dinner and its ratio: what will happen tonight?!
***
R home tomorrow. I confess I’m now getting a bit tired, hazy with what needs doing. Along with all of the usual kid organising, shopping, meals, laundry, my work (what work?!), cats, guinea pigs, homework etc, there is as ever all the diabetes kit to keep track of: managed to order and go pick up strips and lancets four days later…only the manufacturer seems to be having problems with the strips and they are nowhere to be found…Hmmm…So I have to remember (again, and maybe even again if they don’t have them) to phone or go in and track down the strips. (And prepare the ground with E in case the chemist doesn’t get them in: we have a supply of sorts for another sort of meter, but old habits really do die hard.) Also managed to check insulin supplies — today — and find that we only have one vial left. So ordered those too. And ordered glugogel, because although we’ve never used it, I suspect that having some in-date is a good idea! We are lucky to have a really convenient and helpful chemist, right in our grocery store. They keep track of everything and request repeats from our doctor, which saves me a step… But even they did look at me a bit like why are you placing three orders here over several days when if you’d had your mind even half together you would have done it all at once last week?
Oh well.
The good news is that Archie and Schubert are pretty much best buds now. Cleo however still has this odd love/hate thing going with Archie, and will walk right up to him, hiss in his face, bat him, then run away. And he’s just standing there minding his own business! Then he might run after her, and she runs and hisses and makes a huge fuss…but actually seems to be almost playing…? I don’t know. Neuroses clearly infect even our pets in this household!
Okay so R is now in Japan. Has been there for 5 days, back in four. Having a fab time, taking lots of pictures, and really reveling in the extreme aesthetic differences. Would love to be there with him…! We skype in the odd in-between times, the miraculous hour when it’s not the middle of the night for him or us… This generally falls in the afternoon. In fact one day I shot home from work for half an hour just to see how visiting Kyoto went! So the children have only spoken to him once in all this time. For a family that talks — alot — this has been decidedly odd. And I imagine E especially misses his presence: it’s hard to overstate how much young men need their dads. And in E’s case, he depends on his dad’s objectivity, his clear-thinking, his rock-solid reassurance (the only one E really believes, I know this) around anything to do with diabetes. So it’s probably doubly stressful.
Though everyone’s generally holding up well.
Except for the uh… hour long hypos.
So this exact thing has happened two nights running: a short dual wave (dripping insulin in) for pizza in one instance, fries/chips in the other. (Here I reveal my almost complete lack of cooking skills: we are all struggling with fairly naff food, being used to the dreamboat and exceedingly healthy, home-cooked stuff of R… Ack.) ANYWAY (again), short dual waves. Which usually cause no problem. So an hour after each ends, there’s a plummeting hypo. A very bad one. Taking not one, or two, or three, but FOUR treatments over the hour to sort. E’s fairly swimming in apple juice, and ill from jellied sweets. The adrenalin has kicked in, and he’s panicky, upset, cross…
And who can blame him. Really, really, really a DRAG.
Then, having sorted the long hypo from the night before, yesterday morning I walked into his room and smelled it for the first time: pear drops. Sweets. I sniffed his bin. No, wasn’t that. I sniffed his covers. No, wasn’t that. I realised with a sinking, guilty heart that it was him, his breath. And that this meant he had possibly dangerous ketones. That he would be sky-high, and had been for hours.
Choice words, and crashing guilt. He was high indeed: 17 mmols.
In the event, the high cleared quickly. I signed him off PE (unsafe at 14 mmols plus), and by lunch he was in range. We communicated throughout by text.
Last night the same thing happened. Not just a funny turn then. Something going actually wrong. Four hypo treatments in the space of an hour. I got up in the night (because of the night before) and boy I was glad I did…Once again, he was 17 mmols. I corrected, and by morning he was still too high, but in a more sensible range, 11 mmols.
This is my theory, and R concurs (skype this afternoon!): first, his dinner ‘ratio’ (eg how much insulin needs to be given for each 10g of carbohydrate) needs tweaking. On the pump, ratios are set for different times of day and different meals, depending on insulin sensitivity. For us, traditionally dinner has needed the least amount of insulin (I think this is common?), and it is also the one meal that we change the ratios for quite frequently.
Second, the treatment of the hypos is inefficient. He almost always treats hypos with juice in the first place. Juice is very efficient, enters the bloodstream quickly. He doesn’t like, however, to drink LOADS of juice. So he chose to alternate the juice treatment with fruit pastilles.
The problem was, he was ‘dropping’. This meant that the peak of the insulin was not yet reached when he went hypo (this peak is around 2.5 hours after a dose, or in the case of dual waves, about 1.5 hours after it ends). So it was not a question of ‘recovering’ from a low, it was a question of keeping from going lower… Which didn’t work, both times. Both times he dropped like a stone.
I think I’m pretty clear that fruit pastilles simply aren’t quick enough in for that situation… They don’t work, so you treat again, it sort of works, but you must treat again…My thought is that they kick in well after they need to, stack up, and… result in a scorching high later on.
So. In that situation, no more pastilles. Just juice, just direct sugar. I feel sure that the lows could have been controlled sooner if only we’d stuck with juice instead of alternating with pastilles.
And we’ve changed the dinner ratio. And no dual wave tonight. So we’ll see what happens.
Sigh.
***
It may not surprise you to know that today, instead of marking or doing any number of other domestic and work-related things, I’ve just had a little breather: I met my dear friend Nancy for breakfast, and then later made a spontaneous appointment for the second manicure of my life. My fingernails are now a glorious deep teal blue. E says he’s ‘never really got why girls paint their fingernails’ — and I can sort of relate. I don’t really get it either.
But it is quite unadulterated fun. When I picked M up from school, she saw my nails and said, under her breath so as not to draw attention to them/her/me: how cool are they? how cool are THEY?
Here is a girl who relaxes by lying in a bubble bath, a bowl of chocolate on the side and an audio book playing. She’s as chaotic and non-girly and wacky-arty (seriously more so) than I am. But she gets it, which must be some kind of parenting triumph!
Looks black but is really deep blue/green...My eyes have barely a wrinkle -- but my hands look my age!
As ever just when you think it’s safe to go out…. E spent ALL of Wednesday hypo-ing (it’s Saturday today). At least SIX hypos. Dig it. Just could not get back up. As I wrote to a friend, by the time he got home from school he was literally scraping six month old sweets from the bottom of his bag to get some sugar, having finished off the four boxes of juice and whole roll of fruit pastilles which he always carries with him.
Sigh. That first day we thought we’d nailed it: discovered that he’d forgotten to temp basal from his exercise in PE, and also somehow that he’d been on his weekend pattern for the pump — which means he’d been getting more insulin across the board.
Aha! we thought, that explains it — and changed nothing.
Thursday rolled around: four hypos. Hmm….
Many of these hypos have been in the 2 mmols range — very low, in other words. So we took action, changing basals all over the place.
Friday: one very low hypo. Too high in two more places.
Argh.
Then somehow we forgot to put pasta on a dual wave (drip the insulin in) last night. So he took the full whack of insulin for 95 g of carb up front, followed by 29 g for a bowl of ice cream, 20 g for a packet of crisps and 10 g for some chocolate…and by bedtime was low and plummeting when we discovered the mistake. In went the juice and fruit pastilles…. but of course this morning he woke on 14 mmols because the pasta GOES IN LATE, the HYPO TREATMENTS STACK UP more unaccounted for carb, and THERE WAS NO INSULIN to cover ANY of it.
Sigh again.
It’ll be fine. But something’s changing. Temporarily. As always. We’ll just get it right, then have to go back to where we were.
Am I allowed to sigh three times?!
And tomorrow R heads off to Japan for nine days.
Ack.
In the inimitable words of the fabulously plotting penguins in the film Madagascar: just smile and wave boys, smile and wave…
Of course I cannot go another minute without noting the progress of our kitten babies since I posted in the autumn. This is what they looked like at about 14 weeks. R had gone into the bathroom (where they had been placed to be safe from the vacuum cleaner!) to collect them all up to take to the vet’s for their vaccinations… and he found this. They climbed up there all by themselves. The caption is his:
"But we don't want to go to the vet's..."
Since then, three of our lovelies have moved on to happy homes. Eudora — Miss Fiesty and adventurous, first out of the box and always up for a good time, was first to do in early December — on a plane back to the States with my sister, B! Oh yes indeed. Little Eudora was apparently a real trouper, traveling to the airport, on an eight hour flight, a two hour stopover, then another hour flight and another drive — all in a gorgeous padded carrier. In hand luggage. Wow.
Artemis and Athena went together to a fellow musician and sister-in-law of a work colleague. We met on a snowy day in the middle of England to do the transfer. The family have always had long-lived, indulged cats — and from the pictures being sent back to me, they have already started down the road of happiness there! Artemis and Athena both emerged as company-needing, extremely loving, cuddly cats. They desperately needed to be together, so I’m so glad they could be.
It’s been a real joy to give them such loving homes. A great relief.
So we have Archie — Archimedes — now as the sole little one. He’s the really laid back kitty second from the right. He and Schubert have a good relationship, sometimes sleeping together and often playing. Schubert can nearly squash him however! But Cleo (mum) almost always gets cross at Archie. She sniffs and plays a little, then growls and bats… It’s kind of sad. Poor Archie. He rolls over and gazes up at her: love me!
He cried for two days when the others went. And the grown up cats were like what you want us to play?! Where are your friends?
He is a stunning young lad though, just beautiful, and very loving. I think sometimes he is still a little lonely — and a mixed message mum doesn’t help — but we give him all the love we can. He also likes to sit and stare at the guinea pigs, occasionally prodding them gently. Bless. Shall try to get a good photo of him as he is now.
***
I’ve sort of thrown a table of blood sugar levels into the sidebar for people’s reference. I talk so much about levels and what is target and what is low and what is high, that it does seem a good idea to follow my sister B’s suggestion of putting up the basic info. The sidebar widget though doesn’t have any formatting with it unless I write it in HTML, which I don’t really know…so it’s really DARN basic right now, though I’ll keep after it.
I did want to say though: notice how narrow the target range is. And shall I shock you by saying that in the last two years I think that there have only been about four days (eg 24 hours) when all of the fingerprick blood tests have shown E in range. Of course between them he may have been all over the place. And what’s for sure is that generally he’s all over the place. As everyone with diabetes often is. This morning he woke low. Before dinner last night he was high. Etc.
No wonder it’s easy to feel like you are always, always doing something ‘wrong’. Not to speak of fighting a losing battle.
Also just to let you know: E was 32 mmols at diagnosis. And on Sunday I heard of a friend’s relative who was admitted to hospital with a level of 72 mmols.
So aiming for 4-8 mmols can sometimes feel like threading a camel through the eye of a needle. Despite all the hope of reduced complications it brings.
Hello everyone. And hello again. So many hellos indeed that it’s hard to know how I will start this post… Apologies? Reassurances? Thank you firstly to those who sent messages via email or facebook about whether we were okay.
Yes, we are really fine. Truly fine. I just had to let things slide in the middle of what was the busiest teaching and admin term for me in several years. It became a case of only the absolutely essential bits of life survive! And the blog just went — poof! — like dust. Before I knew it so much time had passed. It is only with the New Year now upon us that I can sit back a little and think now I can get back to this. Thank goodness.
Because I’ve missed it. Lots.
***
Catching up info: E is now at least three inches taller than me! Yes, choke in surprise. It has happened so fast that I keep thinking he’s either wearing heels (not likely!) or standing on his toes (also not likely since he gave up dance about a billion years ago). He is now creeping toward his father’s height of 6 foot, which his father categorically refuses to acknowledge. M too has shot up: fits my shoes and also wears the smallest women’s size 6 (uk, that is. American it’s 2 I think?).
What the heck?
But it’s the sheer food consumption that is doing our heads in. Forget monitoring carb intake. Just forget it. The best we can do is try to get him not to eat too late in the night, so that we don’t have to get up and test. He’ll sit down and have 400 g of mashed potato, eight small sausages, and a pile of vegetables. Faster than any of us can finish our meals, he’s done and standing up for ‘more food’. He returns to the table with a cereal bar, a pot of yoghurt, more sausages… Our food bill has gone up by 50% in the last six months. SO alarming. He eats all the time. We go through boxes of cereal bars, probably one per day. He also doesn’t seem to want non-carb, like meat and cheese. He really, really wants carb, big time. His body must just be building itself, putting together the infrastructure, like constructing a building… It’s incredible to watch.
I realise I’m not telling you anything many of you won’t know. But I am really reveling in it: his growth means his diabetes is controlled. Which is a source of intense relief.
And controlled it is. The last HbA1c was again very good. This is not to say that we don’t have days of weird swings and runs of highs and lows — but we are blessed with a young man who is admirably keen to stay in some control. He never does not act on the information his testing kit gives him, and he never (unless out with friends in town) doesn’t test. This is hugely to his credit, and how very lucky we feel in this.
Case in point: yesterday he was inexplicably 16mmols before lunch. It scarcely matters how that happened, and although it was less than two hours since he’d eaten his snack, he still felt the number was too high. So he overrode the pump and gave himself a partial correction. By PE two hours later he was down to 6mmols — he didn’t eat to bolster up for exercise because he was worried about having been high (is this a run of highs? for instance), but within an hour he’d hypo-ed and had to stop. He treated, and by the time he was home he was a nice even 7mmols.
I told his father the story. He’s a good lad, he said. Indeed. Much better to have tried to get things lower than leave a high and allow himself to get insulin resistant. We know by now that if we don’t act quite harshly, he can stay high for hours sometimes, depending on why it’s happened. In this case, it was inexplicable. He rightly thought the mostly likely reason was not because of a previous bolus, but because of feeling slightly ill, or from a cortisol high. It was unusually high even for the middle of a bolus.
As it turns out he probably didn’t need to do this, as evidenced by his quick fall in blood sugar. But better to do what he did.
***
Enough extolling! Suffice it to say that we press on. Funny night highs continue, and we just tweak the pump when we think the high might have set in…whereupon it goes away and of course he’s too low. Sigh. We’ve had a good enough few weeks at the moment such that we are hardly ever getting up to test. Thank goodness, because we have been on the floor with exhaustion, both of us. E understands this, and is careful not to eat late if he can help it. We also almost always aim to have any pasta or rice earlier in the evening — before 7.30 pm — so that we can test him right at the end of the dual wave, at 12.30am. I confess that staying up even that late is fairly dire. And once last week OH spilled hot tea over himself in bed after falling asleep waiting for the right time to test… But it’s better than a 3am alarm, for sure.
***
While I’ve been away, some folks have carried on an intermittent reflection over on A Place to Talk. And one question that’s come up from Angela is what people think ‘triggered’ or ’caused’ their own or their children’s diabetes?
Medicine knows quite a lot about genetic predisposition and about viral triggering… I can trace I think E’s trigger through to a stomach bug he had in Italy in 2008. Everyone else had it too, though we only had cramps. He had cramps AND a fever, was really quite poorly. Three months later he was diagnosed.
What are others’ theories, and experiences? As Angela points out, it can feel so random, especially, as in her case and many others’, there is more than one child in a family affected?
And of course it can feel unfair. Does feel unfair. Is unfair. And arbitrary. And stupid, stupid, bad luck.
So there.
Any thoughts welcome.
For now: great to be back.
Waving and Drowning 