And the prize draw winner is..........

About a week ago I invited comments as it was my 100th blog, and offered a prize draw. I had six comments, so I didn't need to use a www random number generator; instead I used an old wooden one, aka a dice.

And the lucky winner is number 4, Siobhan. So, Siobhan could you please let me know where to post the prize to? Contact me at bigswiftyteamatyahoo.co.uk

There has also been some interest in the cider apple butter recipe, so here it is, based on one by Pam Corbin in the River Cottage Handbook No 2, "Preserves".

Take a bucket of windfall apples (say 6lbs). Quarter them if they are average size apples, no need to peel or core, but cut away any bad bits, or maggots. Cook gently in a large pan with a litre of cider and a litre of water, for about 30 mins. Apply hand liquidiser to make a puree, and allow it to drain through a coarse sieve. Most will go through, little is wasted. Weigh the good stuff, and add about two thirds of the apple weight in sugar, and add a teaspoon of ground cinnamon, and a few cloves or half a tsp of allspice. Boil up while stirring, then boil rapidly for about 15-30 minutes as it thickens. Pour jam while still hot, into washed and sterilised jars - this will make about ten jars. Store in fridge after opening, and eat within a month. This won't be a problem, as it's very tasty, and can be used as a jam or syrup.

And I'd like to offer a jar of apple cider butter consolation prize to Alistair, as he's commented the most on my first 100 blogs. So Al, please get in touch too. And many thanks to all my readers, even the shy ones who don't comment!

Treasure Trove on Plough Monday

Today is Plough Monday, as celebrated in the East of England by aspiring middle class people from suburbia. It's the first day of the agricultural year, when work on the land resumes after the Christmas period. As we're now signed up as Radical Homemakers, Domestic Goddesses and Urban Homesteaders, I got myself a diggin'.

And look, there's some blue sky here, after the gloom since the snow and ice melted. This weekend we went for a walk in Friday Woods, and started digging the new veg patch. Some of the patch hasn't been dug for thirty years, so it was hard work, and I spent some of the spadework time catching my breath. Looking at the soil I saw a small dull disc, and recognised I'd found an old coin. And now it's time for a history lesson, explaining why I was a tad excited.

Three thousand years ago our garden was part of a sandy heath and woodland that covered much of what is now named Essex. Two thousand years ago our suburban patch found itself within the massive Oppidum (a very large defended area) of the Trinovantes tribe (ancient Brits). Half a mile away at Gosbecks  the Trinovantes King Cunobelin had his Royal Palace. Two miles away in the other direction is modern day Colchester town centre, which nearly 2000 years ago was the Roman city of Colonia Victricencis, which was made Britain's first capital city. The two local historical sites fairly happily co-existed during the Roman period, apart from the Boudiccan uprising. The Romano/Brits built the largest theatre in Britain, and a massive temple, about half a mile from our house. As we live between the two sites I reckon it's not too fanciful to suggest that Celtic and Roman people were tramping through our garden two millenia ago.

During subsequent centuries, the Romans went away, the Saxons came, and then the Normans. Slowly, over the last thousand years, agriculture spread over the ancient heathland, and eventually our garden became part of Prettygate Farm, as an orchard. Meanwhile the ancient town of Colchester expanded, the farm was bought, and our housing estate was built in the late 1950s.

So when you find a coin in our garden, you wonder who dropped it. As picked up, it couldn't be identified, and a quick wash under the tap revealed a fairly smooth disc. Further careful cleaning revealed that it was a half-penny of King George the Fifth's reign, dated 1930.

Not exactly treasure trove. And we can only guess if it was dropped in the orchard, or was mislaid sometime after the house was built. Still, we had a good Plough Monday, and we wonder what other riches might come from our soil, or will it just be vegetables?

Tenacious D - Diane Ranaghan (and don't mess with the D community)

Tenacious D? No, not the creation of Jack Black, this is a real Tenacious D. I wasn't intending to do "yet another diabetes blog" on my "A Flavour of Budd Living" pages. I've posted a fair few recently, and us Budds have a zillion other interests. But it has been a remarkable few days for the world's Diabetes Community, a species that inhabits a parallel planet to "normal life" where we also live when given the chance.

So who's this Tenacious D, and what's the story? It's Diane Ranaghan, a facebook friend of mine that I've never met on Planet Earth, but feel I know quite well from Planet Diabetes. She has a young boy with Type 1 (aka Juvenile) Diabetes, like us, which means we immediately have an understanding that completely outweighs all our differences, like the fact she is from the USA and is rather keen on footwear.

Anyway, on with the story. A couple of days ago the actress and TV presenter Ricki Lake appeared as a guest on "Good Morning America" on ABC, chatting about various things and said "juvenile diabetes is completely preventable" which is untrue, as it's a disease of the auto-immune system. She was possibly confusing it with (the nine times more common) Type 2 diabetes, which is linked with obesity and lack of exercise. (But it ain't necessarily so, lest anyone is going to jump on the "Type 2 is a self-inflicted disease" bandwagon).

OK, people can make mistakes, and who takes what celebs say seriously anyway? (Er, lots of people actually.) But Lake was promoting her book about health, thereby giving her utterances a certain weight to a less informed public.

The Juvenile Diabetes community were incensed by her view, and swung into action. To her credit, Lake issued an apology on her website and by twitter, but the damage was done, as a mistruth had been spread on prime time TV. And the mistruth is counter to the efforts of the D-community to educate people about our disease, seeking public understanding of the condition, warning others about the symptoms, and seeking funding for better management and A Cure.

Public opinion and sympathy is important in a competing market of shitty diseases clamouring for attention and funding. And the last thing it needs is lots of people being informed that these D-kids will have to lump it, because of their lazy, fat, ignorant parents.

Hundreds of people, mainly D-moms wielding insulin pens in one hand and laptops and phones in the other, bombarded the TV company and Lake's people. They lobbied at all levels, overwhelming customer care teams, complaints inboxes, and chief executives' answer machines. They used their knowledge, their personal stories and their passion, to put up a very persuasive case for the retraction of the comment.

But Lake's apology on its own was not enough. They wanted nothing less than a slot on the same show, spelling out that Lake had got it wrong, and what T1D is all about. And that's what they got. So thank you Ricki Lake, and ABC for listening to public opinion, and responding.

So what about Tenacious D? I have no idea how many people were involved in this campaign on behalf of our kids; it was all well beyond my horizon, at home, looking after our boy. But I do know that, from my vantage point, my friend Diane Ranaghan was in there fighting for us all, showing leadership, and tenacity, spiced up with a large dash of guile. As a result of Diane's and the others' efforts, they have turned round a bad story that damaged our community, into a good story with lots of controversy and publicity for the cause. And ABC have said they will come back for more on this topic. 

I'm proud to be part of the world-wide D-community, and proud to be a small part of Diane's world too.

planetfrank - our JDRF fundraising in 2011

We belong to a super community that we hadn't even considered three years ago. From the time of our Frank's Type 1 Diabetes diagnosis 27 months ago we have met many wonderful people - medical experts, parents, and some actual diabetics! And they have helped us beyond measure. We're now in a position to put something back. First, we set up Colchester Circle D, a support group for parents of children with T1D.

And our latest project is to raise some funds in 2011 for JDRF (Juvenile Diabetes Research Fund), the world's top geezers looking at how to better manage diabetes, and seeking a cure..... But we're not just expecting you to just hand over your money, we want to do something that you will want to buy into. So we are putting together a series of events and initiatives for the year, which we will soon outline.

Meanwhile, we have set up a donations page at www.justgiving.com/planetfrank in readiness of our programme, and lo and behold some have donated already. And you will be pleased to know that I will not be following the fashion of posing for a nude calendar, even for charadee.....

Reach out - animateddog sings... 4C/P

A wonderful song, reflecting on the past, but facing the future. Perfect for New Year's Eve. Best wishes to all my blogging pals.

Nathaniel sings "reach out, push up, speak clear, bring love".

Put everything else down, crank up the volume, and listen to this three and a half minutes of inspiration. It has been my pleasure to get to know Nathan (from the Dead Rat Orchestra) a little in 2010.

100th post GIVEAWAY!!!!!!

This is not really my 100th post, it's my 101st! And I join in the international blogging tradition of offering a giveaway in a draw between anyone who comments on this posting. And what's it all about? The picture shows me in my Christmas Apron, made for me by the talented Mrs Muffin Moon. And the apron's not for freemasonry, it's for cooking. Its first works outing was on 27 December when I made 15 jars of cider apple butter, to Hugh Fearnley Whittingstall's recipe from his River Cottage "Preserves" book. I made it from free windfall apples from a secret location, and it has cinnamon and all-spice added to the boiled-up cider, apples and sugar.

And that's the giveaway prize. I will post a jar of it anywhere in the world, probably against all the regulations, but I'll take a chance. And you've got to take a chance if you eat it - however, it has never done me any harm.

I look forward to your comments. Based on this blog's history Alistair will win, but a free offer might bring lots of my silent readers out of the woodwork.........

Are his numbers OK?

Our friends and family sometimes ask us "How are Frank's numbers?". I guardedly say "Well they're alright I suppose", and they say "Good, so you're managing it OK", and we move onto some other topic. But what I really want them to know, goes something like this:

Frank's blood sugar numbers are only numbers. They are not good or bad; they are just a guide for what we will do next. There are not necessarily any useful trends, just a stack of fluctuating data. Usually there is no particular discernible reason for the ups and downs, and for the large number of readings outside the preferred zone for blood sugar. The numbers are just what they are, a series of snapshots through the day, and there is no mystery to be solved so we can manage diabetes better. We're doing just about alright, and that's about as good as it gets.

For those of us with a fully working pancreas, our blood sugars should be in the 4 to 7 range, maybe up to 10. Going below 4 is hypoglycaemic, and to be avoided. Going much below 4 is a bigger problem, with potentially serious short and/or long term consequences. Going above 10 is hyperglycaemic, also to be avoided, and with serious consequences for long-term health if maintained too high, and serious immediate consequences if very high. In a typical day Frank will have four or five blood tests, and maybe two will be in the ideal range.

Results out of range seem to come from nowhere, which was frustrating for the first couple of years, but is no longer surprising. We have to work with how things are, rather than how we would have liked them to be. Diabetes doesn't play by the rules; it's so much more subtle than anything that can be expressed as a formula or law. We know what signs to look for, and what to do, if Frank's blood sugar is too high or too low, and needs immediate attention.

We know how to calculate carbohydrate content of food. We know how to calculate the amount on insulin to be injected (it's different ratios for the morning compared with later in the day). We know how much insulin to add/subtract if the "before meal" blood sugar reading is out of the ideal range. We make adjustments to timing, having consideration to the type of foods in combination - how quick release are the (naturally occurring) sugars? Will the fat content slow down the whole process, so will his blood sugar get too low, even after a meal? We know how to apply a fudge factor for the amount of exercise taken over the last few hours, and with an eye to what's happening next on the activity front. We know to accept that growth hormones are randomly kicking in, and that Frank's system will be off kilter due to a cold, or a hundred variations on "whatever". We look at nervousness and excitement, and the weather.

And nobody knows all this better than us, his parents. Nobody can look after him as well as us, and no one amongst our (non-diabetic) family and friends has the slightest understanding of the knowledge and skills to manage a Type 1 diabetic, even if they've visited many times or even lived with us. There is no substitute for 24/7 immersion in the topic, and we've had that for over two years now.

So, when I say "it's OK", what I would really like you to know is:

• Type 1 diabetes is an autoimmune disease. IT WASN'T CAUSED BY EATING TOO MUCH SUGAR; indeed Frank was a model of healthy eating before he became diabetic. There is no cure. Frank won't grow out of it.
• There is no "GOOD" (type 2?) or "BAD" (type 1?) kind of diabetes. Some Type 2 diabetics are insulin dependent, some can manage it with better diet and exercise.
• Type 1 diabetes is not a disease where you take your medicine and forget about it. We have to think about diabetes all the time. Yes. ALL THE TIME. We are always thinking about his activity, and what his current blood sugar level is, or what he's eating, or what he's going to eat, or wondering if he's rising or falling (slipping into a coma if too high or too low), or what's going to happen next.
• Diabetes is unpredictable and always changing. Calculating insulin doses is a complicated judgement - and it's NEVER a+b=c. EDUCATED GUESSES are Frank's lifeblood, it's not about number crunching, and scoring "good" numbers.
• Diabetes is deadly NOW. Not in 50 years. Not if we don't take care of him. No matter what we do or how hard we try. If we call our local hospital or have a night in the ward, it does not mean that Frank's diabetes is "bad". Calling experts for help is a normal part of life for us. The more we learn from the diabetes community, the more capable we are to make changes on our own.
• With diabetes, there are no small illnesses. Diabetes makes a simple cold anything but simple. The vague rules we follow go OUT OF THE WINDOW, and we're in the realms of guess work, barely above the level of hocus pocus. Which we've become quite good at, out of necessity.
• We have "BLUE LIGHT" priority at the local hospital, so we can go there any time day or night and get a bed straight in the children's ward. It's good that we don't have to go through the Accident and Emergency bit, queueing up with people who have cut off their own arms with chainsaws, or drinkers who have had the pavement leap up at them. It's bad that we need the blue light system in the first place, but very many thanks anyway to the DGH.
• Wearing an insulin pump does not mean that you're cured, or that life is easy. Frank hopes to get one in 2011. The pump site where a tube goes into the body, is inserted with a needle every 2 or 3 days. We will continue with the many-times-daily finger-prick blood-tests, indeed they will probably be MORE frequent than now.
• We are up EVERY night, routinely checking him over, sometimes changing the bed linen three or more times. That's the way it is, and it is not going to change anytime soon.
• EVERYTHING affects blood sugar - exercise, illness, excitement, nerves, the weather, growth hormones, Colchester United's results...
• Frank CAN eat ANYTHING he wants. However, we'd all be better off with a healthy eating regime. Sugar-free is not always better, if it has disgusting artificial sweeteners. Frank has no need of special food products for diabetics.
• He MUST have his blood test BEFORE eating. Not after a few bites. Not later. BEFORE. So that's why we sometimes appear as Mr and Mrs Nasty before mealtime. At its best it's all an inexact science, and we cannot allow further inaccuracies into our data.
• We go to the hospital every 3 months for a checkup. We know how to handle our child's day-to-day diabetes management better than any nurse or doctor - not that we don't need their expert specialist help and advice. We know his body and disease, and that that being a substitute for a healthy pancreas is pretty much impossible.
• We don't want your pity. We don't want you to feel sorry for us, or for Frank. We enjoy a good, nay fantastic, life. But we want you to FEEL for us... and then take that empathy and put it into action to help us find a CURE (and there's another post coming up on this in a few days).
• People who don't care to learn about diabetes because they tell us it's "no big deal" make us so angry that steam comes out of our ears. On the plus side, this disease has made me less bothered by people who whinge about the slightest inconvenience; they keep their distance from a bristling D-dad.
• It costs a LOT of money, for hormones, supplies, and hospital appointments. Hurrah for the NHS as an institution. And hurrah for the wonderful people at our corner of the NHS, at Colchester and Addenbrookes.
• We can never leave home without our supplies - it's life and death. Nothing is as easy as before... SPONTANEITY of actions and eating IS IN THE PAST. When we leave the house we are fully loaded, with Frank's medical supplies and spares, plus his snacks, and juice, plus lots of water as he has a huge thirst. Plus emergency supplies in case of transport breakdown or unplanned delays; what would be inconvenient for you would be a big deal for us, unless we had planned ahead. When we go away, we check out where the local hospitals are, and the route from where we are staying. Save your money by coming shopping with us, we're fully loaded before we start!
• When we come to you for a meal, we will have an emergency meal for Frank in our bag which we will crack open at his meal time, if you are not serving up. Experience has shown we cannot depend on YOU to provide what you say you will, at the time you say you will. Diabetes stalks us 24/7/365 and doesn't wait around benignly. It has no holidays or rest. NOTHING.
• Diabetes changes EVERYTHING, you can't - for a minute - let your guard down or get "lax" in your care or attention to detail. We do need to know if you have given him some food when we weren't looking. Just because it came from the health food shop, and has "natural sugars", a sesame brittle is still very high carbs, which may be better avoided, or at least allowed for, insulin wise.
• We are TIRED, and we often look like hell, can't think straight, sport dark circles under our eyes, don't hear what you're saying... because we live in a parallel world where diabetes hijacks our brains from time to time... and our energy.
• If I seem extra VAGUE at work, sometimes my mind's elsewhere. My main job is looking after Frank. My main part-time paid job is a couple of days a week, but I have to work at home some evenings to make up the lost time when I can't focus at my paid job.
• We are very FORTUNATE indeed that the two of us have the capacity to devote our efforts to our son. However, we have no family or friends support - no one outside the D-community has stepped up to learn about T1D, or how to test and inject, or learn how to manage it. WE CANNOT LEAVE FRANK WITH ANYONE FOR AN HOUR.
• My wife and I rarely have time together... alone. Date nights are non-existent as we have to be back for the 10pm blood test. So, while I will be genuinely happy for you that you get to go away for your anniversary, or that you got to go out together for dinner and the theatre - I'll also be very jealous! (The play was rubbish anyway.)
• I really REALLY REALLY like to answer your questions, as it shows you're taking an interest.... BUT I really don't want to hear about your 93 year-old Great Aunt Mabel who lost lost both of her legs and went blind, especially you telling the story in front of our Frank.
• I do NOT want to hear about a cinnamon enema, a bed of nails with a kryptonite pressure prong onto the pancreas, or some amazonian tree moss that you think is going to cure him. I really don't want to hear you suggest that we just stop giving Frank carbs and everything will be alright. If it was that simple do you really think I wouldn't know?
• No, I'm really not glad Frank "got it so young" and that "he'll never remember life before". No, that's sad. And his exposure to a health threatening condition is longer than those diagnosed later.
• Do you need an ANIMAL put down? Our medical supplies are all around our home - in the fridge, in his green bag kit, in the van, juices stashed in convenient places, sharps bins, spare supplies, boxes of kit, paperwork for his treatment, all to help us have a normal life while living with Frank's Type 1 diabetes. We have enough insulin to knock out a small herd of horses.
• It is incredibly painful to hold your child down to give him shots or blood tests. This should always be done with the agreement of the child, and it can take a stressful hour on some occasions.
• We've already cried enough tears to fill an ocean, it does get better with time, it will always hurt, and we are always UP FOR THE FIGHT for our child and his health.
• We will never let diabetes stop him or hold him back. Dealing with diabetes makes you stronger. Our boy is so brave, even when we feel weak.

While I long for you to "get it" and to understand this crazy life we live.... I also hope that you are ALWAYS an outsider and that you NEVER experience this first hand.

Thanks to Hallie at http://www.theprincessandthepump.com/ for inspiring us to tell our day-to-day story.