Shoot Up or Put Up

I recently had cause to look at my fingers. Not a high octane thrilling experience, I’m sure you’ll all agree. But I did notice the array of tiny dots caused by the last zillion, or so, blood tests that my poor, ravaged fingers have had to endure. While I can never take a break from diabetes, I thought that my mangled fingers could do with a rest and so I decided to give alternate site testing a go.

My first meter, along with the myriad that I’ve used since, came with the obligatory finger poker. Said finger poker came with an alternate clear bit to shove on the end for what the guidebook described as “alternate site testing”. “How thrilling”, I thought, as I chucked the apparently useless bit into the bin.

However, last week I dug through the rancid, rotting fish bones in the bottom of my bin and pulled out said clear finger poker bit and gave it a go. Incidentally I’m not really sure why finger pokers have a clear end bit for alternate site testing. Answers below if you have any idea.

Anyway, back to the article; with my poker ready to poke I started with my palm. The first thing I noticed, pretty quickly, was that it hurt. Quite a lot. Maybe my crusted fingertips are so covered in scar tissue that I can no longer feel anything through them – not even a sharpened piece of metal being thrust into them. (Bang goes a career in delicate eye surgery). But, whatever, it seemed more painful than the fingertips.

I also noticed that a bleeding palm is quite difficult to give a squeeze to get that little extra bit of blood out as you do with your fingertips. As a result I failed to fill up three test strips and my meter moodily displayed its nagging “You haven’t put enough blood on, eejit!” message (I have a very rude meter).

The palm being a failure, I then moved on to inflict some misery on my forearms. The fatal flaw with my arms is that they’re quite hairy. Not exactly the matted fur of a gorilla, but certainly enough hair to be going on with. Said hair just made things trickier but, bravely, I persisted.

Much like the palm, the arm isn’t very squeezable and so getting that all important extra drop of blood out was quite difficult. So I increased the depth gauge on the poker until I could swear I could hear the lancet scraping against bone every time I attacked myself.

Finally the mission was accomplished and I managed an alternate site reading. However, I then observed, with mild revulsion, how much your arms actually bleed after being stabbed with a full-depth lancet. After my five or six attempts I looked like I had enjoyed a jolly evening of self-harm but, hey, at least I had my reading.

So will I continue to alternate site test? Probably not. It generally seemed like a pain in the arse and wasn’t very successful. However, because of the post-test self-harming-look I might save the arm-tests for Hallowe’en parties.

So old you have to pee on them

Recently I suffered an unwelcome visit from a mild throat infection. I mention this not to get sympathy (because I know I’ll get Sweet FA from you lot) but because it really messed up my blood glucose levels.

Despite being hobbled by MDI, I tend to keep my blood glucose in the single figures (go me!) but with the introduction to my throat of a whole bunch of bacteria or virii (or whatever the plural of virus is) I just couldn’t maintain this happy medium. So I spent a good part of last week testing and injecting, testing and injecting. It got so bad that over a morning I had to shove in 14 units to cover off a small bowl of cereal and glass of orange juice. The Diabetic Gods were not smiling on me that day.

Anyway, with all this testing of my highly-sugary blood my faithful meter kept reminding to “CHECK KETONES”. Usually whenever my meter orders me to “CHECK KETONES” I ignore it. Firstly, I don’t take orders from no one, see; and secondly I’ve never really understood the point in checking for ketones.

If, say, my BG is particularly high I know this because my meter tells me so (and I feel crap, of course). I then duly correct the high by shoving in an appropriate amount of humalog. My BG then comes back down to normal and I get back to humdrum day-to-day stuff – like organising coups in backward African states and international jewel theft, that sort of thing.

If, however, my BG was high and I checked my ketones and I discovered I was indeed producing a low level of ketonic-goodness I would, uhm, do exactly what I was going to do anyway and shove in some humalog and wait for normality to return. Given I’m just doing the same thing, why bother testing for ketones? As an aside, it’s obvious though that if things go really out of goose and my BG is high for days on end, then perhaps ketones, DKA and all that stuff are much more important and work testing for.

Anyway, getting to the subject of this article, after being prompted by my meter 300-or-so times to “CHECK KETONES” I thought, just this once, I would treat myself and check them. It was clearly a quiet evening.

So I dug out my faithful Abbott Optium Xceed, found some ketone strips in the very back of diabetic supplies drawer and prepared to test. Imagine my crushing disappointment when the meter reported an error, prompting me to check the “use by” date on the strips. June 2007. Oops!

Given I was diagnosed at the end of 2005, this packet must have been at most two years old at their expiry date (I suspect they were younger than that as they were the new type of ketone strip that Abbott now do). I understand that strips and what-not will, in time, degrade and it’s probably best not to use them after that time; but a shelf life of only two years or so for something that must be pretty stable? Surely that’s a little suspect? (Please note, I haven’t actually done the slightest bit of research on this fact; it might be the case that test strips are more volatile and unstable than a dodgy nuclear warhead and that Big Pharma has struggled valiantly for years to tame test strip chemicals to last as incredibly long as two years. But I suspect not).

Anyway, in conclusion, this all meant I couldn’t test my ketones the other night. I could blame Big Pharma for evilly building obsolescence into its products; but, really, I blame myself for not checking the use by dates on my spare strips for the last two years. D’oh!

Just out of reach

By Samantha

Today, I go into battle. Excuse me while I suit up…and the somewhat serious nature of this post…

Since deciding that an Insulin Pump would be the best option for me, I seem to have had nothing but trouble from various people in the diabetes specialist world. As some you may know from reading my own blog, I have recently come out of a few years of huge diabetes rebellion which has culminated in the onset of peripheral nueropathy. Not very nice I can tell you. And since getting my backside into gear, my blood sugar levels have been all over the place. We’re talking constant hypos (three or four a day usually), which I don’t often feel, as well as huge highs. And all of this is despite carb counting.

I have been arguing with specialists for months now about getting a pump. And my fantastic nursing team have been brilliant about it, pushing my notes forward to various professors and big cheeses.

Then the phone call this morning came. It was my nurse, and she told me that the big cheese had said under no circumstance would I be eligable for a pump. He reckons my latest HbA1C is too good, and I’m too well controlled. Funny that…despite phoning up my nurses in a panic because of various factors and them knowing the factors that have contributed to my wanting a pump. Funny, that despite having massive blood sugar issues, and massive problems with the restrictions of MDI’s, that they still feel it necessary to refuse this flat out.

HbA1C is not the be all and end all of starting on insulin pump therapy surely? Surely there are other factors involved such as the way the diabetes affects the person in question’s lifestyle? Such as, oh I don’t know? Deblitating hypos? It just seems funny that a supposedly brilliant team has immediately jumped on the HbA1C thing, rather than considering all the options.

A total kick in the teeth. And one I’m not going to give up easily I can tell you. Someone fetch me a giant stick so I can keep hitting my specialist with it til he relents!

My fight starts now. It’s going to be a long and hard battle, and many lives may be lost along the way. But I’m certainly not going to give up on this one. The emails to various people in the know have been started, and a full on daily diary of blood sugar issues and whatnot has been started too. My weapon of choice? One fully loaded novopen 4…kapow! Take that specialist team!

But my question for you guys is thus: have any of you had to put up with such things getting hold of a pump? And also, do you have any advice?

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Samantha is Type One and regularly blogs at http://www.talkingbloodglucose.com/

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.

The Portaloo. My new best friend

By Samantha

So on Thursday of last week, after dragging myself out of bed at 5.30 in the am and chilling out with a nice few (four!) coffees to get myself ready for the day, I inadvertently found myself rushing like a lunatic to get everything ready and get my backside out of the door at 7.15.

Now of course, usually I’m alright at doing this and if I forget anything usually realise within moments of getting out of the door. Except on this particular Thursday, I was almost twenty minutes down the road when I realised that I had forgotten a few very important things.

First of all, the pills I take for my so called foot issues and then I realised with horror as I was nearing work that I had forgotten to put a new pot of test strips into my kit bag. I honestly wanted to slap myself across the face and yell obscenities at myself for doing so, but of course, wandering down the road in the middle of Southampton muttering to yourself isn’t exactly going to go down well is it? And I didn’t particularly fancy being carted off in a white van.

So instead I phone my other half and moan down the phone at him about how stupid I am and end up bursting into tears. It’s a scary thought, being at work without test strips or the pills that mean my feet will actually function without shooting pains. But I guess I had to deal with it. I was too far away to walk home as that would have meant being late for work, so I told myself I’d get on with it.

And I really wish I had gone home and gotten these supplies.

Up until lunch, things were relatively fine. I had enough test strips to see me through till lunch but of course, me being me I was wandering around this busy, hellish archaeological/building site having a right mooey all day. And in the end I got so fed up I went to the shop and brought myself the biggest chocolate bar I could find for my lunch. Except, lunch was my last test strip. And I was getting really concerned that I hadn’t taken this tablet too, searching frantically in my bag for anything resembling a strong painkiller. Thankfully I had something with me, and by lunchtime I needed it because I was seriously feeling the cold (thank you poor circulation) and nasty shooting pains in my feet matched up with numb toes (thank you transient peripheral neuropathy…not!).

And then, I think the hyper started. The thirst kicked in and I kept running backwards and forwards to the horrible plastic portaloo. Except I couldn’t test my blood because I had run out of test strips. Cue panic. And by this stage I had been sent to the office to do paperwork, so instead of sitting there doing ‘very important work’, I was pacing backwards and forwards trying to work out a solution to the tiny little problem in front of me.

It’s worth noting too, that this ‘neuropathy’ really sinks its teeth in when the bloods are high. And even if it looks amusing when I’m hopping around yelling obscenities, it’s really not.

Forgetting stuff. It’s something I do a lot. It’s assumed everything is always where it should be when I run out of the door, and when it’s not it feels as if that carefully built word of diabetes is slowly starting to crumble. And it’s even worse when you get out and realise that you should have changed your insulin, because now you’ve run out. But let’s be honest, I’m sure we’ve all done it and all felt like muppets when we realise. And spending the day hungry due to being forgetful isn’t very nice. I guess it happens though, we all do it.

It just makes you feel really stupid when things happen that could be avoided. And playing a guessing game with the blood sugars is just silly. I had no idea what I was running at and spent most of the afternoon feeling horrific, yet I could have been running low and have no idea about it. So one thing’s for sure, I certainly won’t be leaving the house without this stuff again in the near future. Yet saying that, what’s the betting that come next week, something else will be forgotten. Although saying that, I walked out of the house without my trowel this morning – my archaeology soul right there…and also my lunch. But that’s a different story for a different day!

—————

Samantha is Type One and regularly blogs at http://www.talkingbloodglucose.com/

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?

I have a few friends starting on pumps soon so having previously discussed getting funding for a pump, choosing a pump and answering the top questions people ask about pumps, I thought a few top tips on starting pumping might be helpful.

Firstly, don’t underestimate it; starting a pump is a big change.

Research, research, research. My bible was Pumping Insulin by John Walsh. It’s quite technical but it tells you everything you could need to know about using an insulin pump. I read it before I started pumping, used it to work out what my insulin dosages should be and then re-read it once I’d started on the pump. I’d have been lost without it.

Some of the pump companies do good online training which you can do before you start on the pump. Whatever you do, make sure you do some reading before you start, that way you’ll hit the ground running and it won’t all be quite so alien to you.

Think about taking someone with you to your pump training. I took the husband and it made it so much easier. There is a lot to remember, and it makes such a difference to have someone else who’s been through the training when you’ve forgotten how to change an infusion set!

Don’t panic! You didn’t learn all about diabetes on the day you were diagnosed and the same goes for getting your pump. Understand the basics first, then have a play with the more advanced settings.

Test, test, test – it’s the only way you’re going to work out your insulin rates. If you can get your hands on a CGMS, if only for a few days, I think they make a real difference in helping you to work out what’s working and what isn’t.

Don’t be disheartened. It took me about 3 months to get to the point where I was as comfortable with my pump as I was beforehand. I loved it from day 1, it just took time to work it all out.

Don’t be surprised if you wake up in a cold sweat because you think you’ve forgotten to take your Lantus, then realise that you don’t need it any more. That took a while for me to get used to.

Always carry a spare syringe with you. The proper advice is that you should always carry a spare infusion set in case you rip it out, it blocks etc. Because I’m a bad diabetic who hates carrying junk, I don’t do this if I’m just out for the day. If you’re stubbornly stupid like me, at least carry a syringe with you – that way you’re not completely scuppered when you have one of those days.

Fellow pumpers, do you have any other top tips for those about to enter the world of pumps for the first time?

We diabetic types can be a grumpy bunch. I can whinge for hours about how inefficient my GP’s repeat prescription service is and how my repeat prescription rarely includes what I actually ask for, but plenty of stuff I didn’t (why would I need hayfever tablets in December?).

Changing an infusion set sometimes feels like an overwhelming hassle, and I’m never happier than when I’ve started a new box of test strips so I know I don’t have to fight with the packaging again for another week or so.

In case you hadn’t guessed, I find the minutiae of diabetes a little tedious to say the least.

Imagine my horror when my beloved (ok, not quite beloved, more “basic model that fulfils all my requirements”) Optium Xceed glucose meter decided it needed a new battery. Oh the hassle. I need to find the box that I’ve filed away safely but can’t remember where, then no doubt fill out forms in triplicate and send off my birth and marriage certificate along with glucose readings dating back to 1996 just to get a new battery from those darn meter makers.

How wrong could I be? In a last ditch attempt to avoid having to find the meter box or call a helpline and answer 101 irrelevant questions about my diabetes just to get a new battery, I went to Abbott’s website. At this point I discovered I am nothing but a weaselled old cynic. They have a free online ordering system for replacement batteries. It’s quick and easy to use and collected an acceptably small amount of data for marketing purposes. And my new battery arrived the next day.

How simple is that? What a refreshing change from the usual quagmire of diabetes admin. Thanks Abbott. Online replacement battery ordering is a small thing, but it makes life so much easier.

Right, I’m off to go and get irritated about having to make an appointment for my eye check

A needling problem

Avid readers of your soaraway Shoot Up will know that I’m currently on an 18-month long NHS waiting list for a pump. You’ll also recall I’m not too chuffed about this for obvious reasons. As, on the whole, I’m generally a pain in the arse I’ve been writing polite letters to everyone concerned about this sorry state of affairs.

I’ve generally had sympathetic replies from my MSP, the chief pump honcho at the hospital and the Chief Executive of the health board wrote to me the other day to say he’s asked someone to investigate and report to him about pump provisioning. It does seem that people are generally supportive, which is nice to know but – of course – not actually of any practical help to diabetics.

Certainly in my area the main sticking point appears to be the lack of funding – not, as you might expect, for the pumps and supplies themselves but for the training required for new pump users. I do agree that pumps are slightly more complicated than administering MDI, as there seems to be a greater possibility of complete cock-up with a pump compared to MDI. Though, as we all know, it’s very easy to utterly mess up with MDI – I do it quite often!

My health board undoubtedly has some great DSNs and the training I received when I was first diagnosed was relatively brief but was of a very high standard. But, unfortunately, there just doesn’t seem to be enough of them to go around. Currently their policy is to train about 5 or 6 new pump users every two months. This just isn’t enough throughput to increase Scotland’s woefully low number of pump users up to levels that are on a par with the rest of the country, let alone the rest of the western world.

If training genuinely is a bottleneck (and not just a slightly cunning feint to avoid funding new pumps without breaking the rules) then there seems to me to be a possible solution in the form of a public-private initiative in which everyone could win.

So here it is – what about the NHS partnering with the pump manufactures to provide training? The pump manufacturers will, obviously, know exactly how their pumps work, how they’re best used and will have a wealth of experience in supporting their customers in using their products. Everyone knows that diabetes is a nice earner for our favourite pharmaceutical companies and so the cost of training could be recouped on a cost-recovery basis or even as loss-leader set against the ongoing purchase of pumps and supplies.

Pump manufactures would surely have a reasonable amount of available resource to chuck at training (especially if it benefited them through long term and ongoing sales) and such an arrangement would free up NHS staff to do what they do best – supporting diabetics.

But might this lead to reduced patient choice? If, for example, Small Manufacturer A wasn’t able to supply training while Large Manufacturer B did, then might there be an inherent bias in the NHS to encourage diabetics to get a pump from Large Manufacturer B as they could then save on training costs?

I don’t think so, as any such arrangement would necessarily reduce the training overhead for the NHS allowing them to concentrate their resources on supporting patients who wanted, for whatever reason, to use a pump from Small Manufacturer A.

In this scenario everyone wins – patients get training and pumps quickly; the NHS’s training costs are reduced; the pump manufacturers get a loyal and going supply of lucrative diabetics.

But what about the issue of the bifurcation of training? After all, training from a pump company might not be at the same standard as NHS training? (Of course, it might be better). But given that standards of training and pump provision vary wildly around the UK, I can’t see that this would make any significant difference from the current position.

Funky snake and stick combo

I’m a bad person. I’m bad because I don’t carry any form of diabetes-related ID on me at any time. I don’t have a laminated ID card, medical bracelet, one of those emergency button things, a lapel badge saying “Ask me about my blood glucose” or even a huge tattoo on my forehead reading “I’M DIABETIC”.

I was reminded of this fact as I was rummaging through my woefully large pile of filing recently and found an ancient ID card that I was given when I was first diagnosed. It listed my address (two house moves ago), the insulin I use (since changed) and who to contact in an emergency (wrong number); so it was almost entirely useless. The obvious fact that it was at the bottom of a pile of unfiled paperwork rendered it as utterly pointless as Anne Frank’s trombone.

I just think that medical ID is pretty pointless unless it’s so huge and obvious it renders it embarrassing. I could carry around a small laminated card in my wallet, but what use would that be? If I’m found unconscious on a bus, it’s likely that I’ll be TASERed by the police as a suspected terrorist or refused treatment for being drunk before anyone ventured forward to check the inner recesses of my wallet. In any event, if anyone did open my wallet they would be blinded by the flock of panicking moths making their escape.

So to really be useful, medical ID needs to be really obvious. Some people wear watches decorated with the Rod of Asclepius (the proper name for the stick with snake round it, fact fans) which might work, but then I would have to give up my fancy Titanium Seiko which Katie bought me. As I’m clearly not going to replace said Seiko with some mangy, cheap watch decorated with a cartoon snake, this isn’t really much of an option. Similarly bracelets a just rubbish and clearly wouldn’t fit with my metrosexual man-about-town image (such as it is).

In the most extreme cases, I have seen some diabetics submitting to the needle and getting medical ID-style tattoos done. This, obviously, is just silly. Imagine your embarrassment if some Nobel Prize winning genius suddenly came up with an overnight cure for diabetes (it could happen, optimists tell me) – you’re stuck with some stupid permanent tattoo saying “GIVE ME SUGAR” (no doubt illustrated with a snake on a stick) for the rest of your life. Not so good.

So until someone comes up with a good idea for medical ID that’s actually useful and practical then I’m just going to wing it and hope I don’t get TASERed.