Shoot Up or Put Up

There are certain things in life that only those of us who are pancreatically challenged will ever have the pleasure of doing. Having a heated debate about whether or not you lick your finger after doing a blood test is one of those things. Said debate over at Diabetes Mine got me thinking.

I lick. I’ve always licked. It has never occurred to me to do anything with the left over blood on the end of my finger other than to lick it (or occasionally spread it round my sheets)

I’ve been licking for almost 27 years now and so far no horrific consequences have befallen me despite the gallons of blood I must have swallowed. Here’s where it gets disappointing. My thinking went along the lines of – 27 years with diabetes, guestimate an average of 5 blood tests a day, a lick each time, I’m virtually a vampire I’ve ingested so much of my own blood.

If we assume a blood test takes on average 1 microlitre of blood for the machine and another 3 microlitres left on the finger for licking purposes, that gives us a starting point.

I’ve had diabetes for almost 27 years or 9,862 days to the nearest year (including leap years – thank you pedantic husband).

Work on an average of 5 blood tests a day, every day and that gives you 49,310 blood tests since my pancreas packed in (which in itself I think is a pretty impressive number).

If I lick 3 microlitres per blood test that means I’ve ingested 147,930 microlitres of blood over the years.

Sadly, it takes a million microlitres to make a litre which means after 27 years of committed licking I’ve only managed to ingest 148ml of my own blood. That’s about the size of one of those small cans of diet coke you get on a plane.

What is it with diabetes and size? I thought I took insulin by the gallon but then discovered it takes less than a teaspoonful per day to keep me alive.

Now I’ve discovered that all those hard years of testing and licking would barely sustain a mosquito on a diet.

If I was a vampire I’d have starved to death by now.

Note: The numbers in this article are a stab in the dark. I’m really not that interested whether they’re 100% accurate or not. I’ve already had a tedious discussion with the husband about rounding up and down, decimal places and how much blood I lick versus what goes onto the test strip. I’m starting to wish I’d never started this. Please just be amazed by the scale rather than finicky about the maths

We’re off to Disneyworld in a couple of weeks for a bit of much needed Disney magic. Amidst the excitement it did set me thinking. What would diabetes be like if it was managed by Disney, that all encompassing factory of magical happiness?

If Disney did diabetes…

• My pump would wake me up in the morning with a cheery blast of Zip-a-de-doo-dah
• I wouldn’t be high, I’d be magically elevated
• I wouldn’t be hypo, I’d be having a magical moment
• You’d no longer experience that horrid time in limbo when you’re sitting on the floor waiting for the sweat to subside and the sugar to kick in after a hypo. Oh no, that time would be filled with amazing fireworks displays, beautifully choreographed to classic Disney tunes.
• Insulin would be measured in fairy drops, not units
• I’d have to fight with a certain mouse named Mickey to get to a nice low carb cheese snack
• As a motivator to maintain glucose levels within target range, any results out of range will trigger my meter to play “It’s a small world” on a loop until it gets a result within range. (This way lies madness me thinks!)
• HbA1c results would be delivered via the medium of dance – a good result gets you Mickey and Minnie surrounded by hundreds of dancing showgirls. A less than favourable result is delivered by a screeching Cruella de Ville.
• Snow White would lend me one of her dwarves to carry my diabetes junk round for me (I’m not fussy which dwarf, although I’m pretty good at being Grumpy and Dopey myself so it’s probably best she lends me one of the other 5)
• When I’m having a bad diabetes day and the world is getting me down, a meerkat/warthog dancing combo would appear and serenade me with an uplifting rendition of Hakuna Matata
• The whole thing would be even more expensive than it already is, but somehow you’d feel it was worth the money

Any more suggestions? Have a nice day!

Here at ShootUp we believe a healthy dose of cynicism is as important a part of living well with diabetes as insulin, carb counting and a balanced helping of optimism. 

I’ve already admitted the cardinal sin of not being excited about a cure and questioned whether the sexiness of finding a cure distracts us from providing decent care today.  Now it seems that there are more super cynical Brits around.

Fellow Brit Caroline is a little underwhelmed by the hype around the artificial pancreas. I’ve been meaning to write an article about the issues facing the artificial pancreas for a while, but this one is a really well thought out look at the reality of the situation that I certainly couldn’t improve on. Enjoy!

Welcome to 2010.  A brand new year, a fresh start. And a shiny new lancet in my finger pricker. I’m not reknowned for remembering to change my lancets but I always make the effort to start the new year with a sharp new dagger to spear my finger.

Happy new lancet to you all!

I pushed the button and nothing happened. I pushed it again and it worked. At least when my pancreas broke it went completely kaput. After almost 3 years of uninterrupted service my battery powered pancreas was having a bit of a wobble, but was it serious enough to call for help?

I’m not really the type of person who calls a helpline at the drop of a hat. If something breaks at home I try and fix it. If my laptop is playing up at work, I’ll consult family, friends, strangers, the neighbour’s dog. If all that fails I will reluctantly go through the process of making a cup of tea and mentally preparing myself for the trauma of calling the IT helpdesk. I’m happiest when I’m self sufficient.

The other day I pressed a button on my pump and it didn’t respond. I pressed it again and it worked. That happened a couple of times throughout the day and I started to wonder whether I should do something about it. It’s hard. If my pancreas worked and one day I felt a slight twinge in it I wouldn’t go running to the Dr’s. I’d wait a couple of days, see if it got any worse or whether it’d get better by itself. With my battery powered pancreas though I’m a bit twitchier.

I felt like a neurotic over-protective obsessive when I called the helpdesk and heard myself explain that one button on my pump sometimes didn’t work first time but generally worked second time. The lady on the other end obviously deals with such people a lot as she didn’t laugh at me, said it sounded like the start of a button failure and I’d have a new pump on my doorstep the next day. Good job Medtronic, great service.

I wasn’t being neurotic, just pro-active. So now I’m wondering if I’ve been too lax over the years. Perhaps I’ve not been diligent enough with my electronic devices and I need to up my game. The vacuum cleaner made a strange noise last week when I turned it on; I should probably call the help desk about that and let them know. The fridge door squeaks too; I might give the manufacturer a call. And when I turn the TV on it occasionally flickers; I should report that to someone. I could become a professional pesterer.

I must stop there. I’ve no time to blog any more; I’ve got help desks to call.

Satsumas, a dangerous force

Satsumas are one of my favourite things about Christmas. I know it’s a shocker to hear that I prefer satsumas to traipsing round overcrowded shops and avoiding hysterical toddlers who’ve just had a traumatic encounter with a Type 2-in-waiting in a red coat with a bushy white beard but obviously I’m just strange.

Many moons ago when I was a child we didn’t have chocolate at Christmas, for obvious reasons. Instead we had satsumas and nuts that you crack. Any other time of the year I can happily let Tesco shell my almonds and brazils, but at Christmas I must do it myself.

This is where having diabetes at Christmas gets dangerous. If I simply bought a box of Quality Street and ate my bodyweight in sugar over Christmas life would be simple. Instead, I indulge in the perilous pleasure of satsumas and nuts.

Last night I nearly broke my poor husband’s nose whilst passing him a satsuma via the medium of a poorly aimed cricket throw. It appears that when a satsuma hits you in the face at speed it isn’t as soft as it looks. This wouldn’t happen if we just bought chocolate.

Then there are the nuts. There’s nothing nicer than a freshly cracked nut. Sadly when I do it we either end up with a hazelnut shattered into a million pieces all over the living room, or I do myself some form of mischief with the nutcrackers.

My inevitable conclusion to this deeply scientific study is that having diabetes at Christmas is a hazardous occupation for me and my family. Christmas pudding, chocolate and eggnog are inherently safer than the diabetic friendly satsumas and nuts. For the sake of my family I fear I must indulge.

I’m lucky in that I get to talk to quite a few pancreatically challenged people, both in the real world and online. I like to hear their views. There are a few things I seem to disagree with a few people on though and I’m sorry, but they’re things I’m not willing to apologise for.

• I can’t get excited about a cure. Many people believe I should have my insulin withheld for a week to torture me for this abhorrent view. I’ve had diabetes since I was 4. If I’d have spent all that time wishing and waiting for a cure I’d have had a pretty dull life. It’s a great marketing ploy – it’s so much easier to raise funds for research into a cure rather than research into a project to examine the best ways of helping teenagers live with their diabetes. But ultimately, it’s not something I waste much time thinking about.

• I will not feel guilty about costing the NHS money. I pay my taxes, I did nothing to bring this on myself. I don’t look at people with asthma, eplilespy, multiple sclerosis or cystic fibrosis and think “they’re not worth the money it costs to keep them alive” so why should I think it about myself.

• I will not apologise for having an“expensive” pump and CGMS. The amount of times I get told – by a mixture of healthcare professionals and the pancreatically challenged  “pumps are very expensive”, “they’re not suitable for everyone”, “you’re very lucky to have one” is to be frank, a little tiring. Let me take those one by one.

• “Pumps are very expensive” – compared to what? Compared to a packet of biscuits they cost a fortune. In comparison to kidney dialysis they’re an absolute bargain. Compared to the cost of providing a blind amputee with the support they need to live, they’re a drop in the ocean.

• “They’re not suitable for everyone” – I agree. At which point did I suggest that the world and his wife needed a pump? I did the research and decided it was the right route for me, that’s not the same as forcing the entire country onto insulin pumps. Research by John Pickup* says about 20-25% of people on insulin would benefit from a pump, so no one is suggesting they’re for everyone. I am keen though that everyone who’s done the research, assessed the options and decided that a pump would be good for them is given the chance to use one.

• “You’re very lucky to have one” – yes, I am. And if I’d made no effort to educate myself about how to use it, or I’d got it and left it on a shelf gathering dust I should whip myself daily with a paralysed porcupine as a punishment for wasting valuable resources. As it is, I’m using it to give me good diabetes control and great quality of life. What more do you want?

So, there’s my list of things I’m really not willing to apologise for. Sorry

* Pickup JC. Are insulin pumps underutilised in type 1 diabetes? Yes. Diabetes Care 2006; 29: 1449-52

I spent a lovely Saturday evening in a pub in Edinburgh with some of our readers. Amongst other things we chatted about local diabetes care.

Tim has a letter from the Chief Executive of NHS Lothian telling him that they deliver the best diabetes care in Scotland. Marvellous. When they deliver diabetes care that meets all the national guidelines they can have a gold star. Until then, being the best of a bad lot isn’t something to celebrate.

Around the table in the pub were three people on an 18 month pump waiting list, people who hadn’t even been on a DAFNE course, and a terrifying anecdote I really hope isn’t true about there being an 11 year wait for access to DAFNE training in Glasgow. An eleven year wait for basic education to help you live with a serious chronic disease? It’d surely be easier just to chop off your own feet immediately and give up.

I travelled home on Sunday night pondering what could be done to improve the situation. I’m a big fan of the NHS but it works best when people like us drive it to deliver. I’m hoping those people sat around the table on Saturday night will be going to speak to their NHS healthcare funders to encourage them to start delivering.

Then, like an apparition, I saw this on the interweb “New Edinburgh diabetes lab brings promise” . Aha I thought, they’ve cracked it. They’ve worked out how to deliver excellent diabetes services at an affordable cost to the Scottish masses. Soon my fellow drinkers will be accessing excellent care rather than whiling away their years on waiting lists.

This doesn’t happen often, but I was wrong. Edinburgh is getting a new lab to provide “revolutionary diabetes treatment for sufferers of type 1”. This life changing place will be the Scottish Islet Isolation Laboratory.

Marvellous stuff. I’ve nothing against progress and I’m sure one day islets may/may not deliver some/lots of benefit to some/all of us living with diabetes.

I do wonder though what makes you prioritise something like a new islet cell lab over delivering great healthcare to people struggling to live with diabetes today? Would it be cynical of me to suggest that islets are just a little bit sexier than delivering basic education and healthcare? That perhaps “I cured diabetes” looks better on your CV than “I helped Rachel manage her HbA1c and live a long, healthy life”?

Of course we need investment in future treatments for diabetes, but we also need to quickly and effectively use the proven treatments we already have. Forgive me if I’m not bouncing off the walls with excitement over this new lab. I may be dull but seeing people being given the help they need today to live long, healthy, happy lives with diabetes is what really floats my boat.

I had my swine flu jab on Saturday (affectionately known round here as the pig poke!).

I wasn’t planning to write about it as I didn’t think I’d have anything more to say than Tim’s wildy entertaining piece had already covered.  

Sadly the English experience hasn’t been quite as good as the Scottish one this time round. I spent a thoroughly tedious 90 minutes sitting with hundreds of other people on Saturday morning as a group of very stressed looking NHS staff herded us through the system to be poked.

While I’m in awe of the NHS finally recognising that I have a job and that delivering healthcare on a Saturday is a great idea, I do question the benefit of it in this case when I was pretty much the only person in the building young enough to have a job.

After a perfectly painless poke I was unable to resist rebelling against the system and scandalously skipped my 10 minutes “recovery time”. I felt I’d probably contracted enough germs already, without sitting in an over heated room for ten more minutes listening to people whinge about how much they hate injections.

I read on the interweb that some bloke called Tim in Scotland had his jab and it had no effect on his diabetes. This proves that everything you read on the interweb is rubbish. Six hours after my jab I headed skywards and stayed there for 24 hours before starting to decline. Now the diabetes is back at normal levels but my arm is killing me. Apart from that, I’m remarkably unscathed.

So, what do we learn from this tale? Don’t believe everything you read on the interweb and if you want a pump, come to north west England, if you want a speedily efficient swine flu jab, Edinburgh is the place to be.

I’ve been reviewing my insulin history over the last 26 years and it appears that while I’m able to sustain a reasonably long relationship with an insulin brand, I have been a bit of an insulin tart over the years swapping to the latest thing when it’s caught my eye.

When I was diagnosed, back in the dark ages, Eli Lilly were the big thing in insulin. They’d just brought out this new stuff called human insulin. In the dark ages most people used animal insulin, produced by boiling up dead cows and pigs, running the resultant broth through an insulin extraction machine then bottling it. (Here, I must admit that the finer details of this description may be a little inaccurate and I acknowledge the process was probably a little more refined than this, likely using microscopes and stuff.)

Anyway, human insulin was the next big thing and my consultant was very excited that Lilly’s Soluble and Isophane human insulins were on his prescription pad. At the time they seemed fine, they kept me alive which was better than my own body could manage so they were a good thing. Looking back, they were pretty crude. The long acting liked to peak and fall like a rollercoaster and the short acting needed to be injected six weeks in advance of you thinking about eating.

It was the best we could find though, so we stuck with it. My promiscuity started early when aged 9 I jumped ship and moved to NovoNordisk. They’d brought out a marvellous new invention – the NovoPen. Instead of using a syringe twice a day, you could now use a super sexy metal pen to inject with four times a day – it came with Actrapid, a faster, shorter acting insulin you injected just 2 weeks before your anticipated meal. This was intergalactic type progress!

Actrapid’s long acting partner was Ultratard, still with plenty of ups and downs but it also had the additional quirk of only lasting about 18 hours when you actually needed it for 24. Nice.

About 10 years ago the world really changed. A new thing called insulin glargine arrived. And being the insulin tart that I am, I went for it. Sanofi-Aventis became my new best friends with their 24 hour lasting, flat as a pancake Lantus. Marvellous stuff, so much better than that nasty Ultratard although personally the no peaks/no dips thing didn’t really work for me, I found it liked to rocket about 6 hours after I’d injected it, but perhaps that was just me.

The best thing was still to come though. A properly fast acting insulin. Despite my long term relationships with other drug companies, it seems I still held a torch for my first love, Lilly. That smouldering torch was ignited again when they brought out Humalog. You could inject and then eat pretty much straight away (well 20-30 mins but who’s counting?). And it didn’t last for hours on end causing hypos 5 hours after meals like some of it’s predecessors.

I’ve used Humalog for at least 6 years now and we get on just fine. But am I being complacent in this relationship, have I just got all comfy with Humalog and taken myself off the insulin dating scene because we’re lazily snuggled up on the sofa together? There’s plenty more fish in the sea, should I be setting up a date with the slightly newer Apidra or NovoRapid/Novolog? They claim to work a little bit faster and possibly for a shorter duration, but is it enough to be worth the hassle of getting to know a new insulin?

At the moment I think I’m settled in front of the fire in my slippers with my Humalog, not because it’s earth-shatteringly fabulous, but because it’s doing what I need it to do.

Are there any Apridra/NovoRapid/Novolog lovers out there who can convince me it’s worth getting back on the dating scene?