Instructions Not Included

I do get some very interesting emails on occasion. Some of which come with offers or invitations to various events or interviews. The problem comes when I have to reply and say 'thank you, but I can't'. These are frustrating enough when I get invites that are based in the UK - they're almost always based in London and being as I have a limited income and don't drive, I've always had to turn them down. Frustrating, like I say. But from time to time, I get emails asking if I'll be at this conference, or that conference - always based in the States - and would I like to meet this person, sit in something else. Nothing that I'm certain umpteen far more prolific bloggers than myself don't also receive. My response is always the same - 'Thank you, but I live in the UK and do not have the finances to attend. If an opportunity ever presents itself when they might be in the UK, please let me know.'. Best wishes, hit send. That's usually the last I hear of it and understandably so! But imagine my surprise and my pleasure when a swift reply entered my inbox - 

'Would you be interested in a telephone interview instead?'

Why yes. Yes I would! What a great solution! The lovely communications representative and I sent a few more emails back and forth and played some time-zone maths, and set it up.

Which is how I found myself speaking to Terrance Gregg - the current CEO of Dexcom. 

First off, I'll say that it wasn't something I ever thought I would have the opportunity to do, especially away from the ADA conference which was originally the time slot where he would be available. I was very aware of the sort of schedule he must keep and I was very impressed that he was willing to take the time out to talk to me when I was halfway around the world.

I was struck by how much of a gentleman he was - mostly because he was very patient with me. Honestly, I was nervous and I ramble when I'm nervous. I usually make a point of telling people this, and making them know they're free to cut me off - I'm liable to keep on talking indefinitely otherwise! 

We talked a lot about the future of Dexcom and CGMs in general in the UK - as I'm sure anyone who is reading this is aware, the differences in healthcare systems in the US and the UK are quite vast, and it is extremely difficult to get NHS approval for a CGM, with self funding being the only avenue for the majority. 

'Reimbursement landscapes are daunting.' I wrote down as we talked. That's not particularly surprising. We covered some familiar ground for me as we discussed the need for devices, particularly in the UK have to demonstrate a high level of cost effectiveness in order to gain wide-spread approval. 

Within the NHS that makes perfect sense. When you're funding the many, you've got to make hard choices and something like CGM technology has to prove that it can be effective and cost efficient to make it accessible to more patients. It makes sense, like I say. But when you're waiting for that time when the tech will be more easily available, you can potentially get a bit impatient. I like to temper hope and optimism with facts and realism. What was extremely encouraging was talk of recently received reimbursement in Sweden and Slovenia and that a dossier is currently being prepared for the UK. I wrote down a particular quote - 'the landscape is changing.' - which I think balances things in a way that I favour. Yes the landscape is daunting, but it is also changing. In order to make progress, there's a lot of work that has to be done. 

I was also encouraged by the attitude to patient engagement that came across from our discussion. I felt a real sense of belief in the importance of talking to your users and listening to what they have to say. I personally don't think a company stands a long term chance unless they do - if a company isn't listening to my interests, then why should I want to use or continue to use their product or service? But I felt not only the sense of importance but a sense of pride in user engagement. If they're proud of that, then I think they can be proud of themselves. At least in my opinion, for what that's worth. 

We left the conversation with my saying that, for the UK at least, my door, or phone/inbox was always open - I think they have a great products, from what I know of them from reviews, blogs, and all the ways I've come across them. I think they have the right attitude - a plan and long term strategy. 


However, in the style of a late night JML infomercial for fountain pens that will stab through tin cans....

But wait, there's more!

I had a clinic appointment not long after this conversation. Admittedly, I'd been dreading it, but it turned out a million times better than I had anticipated. A HbA1c of 6.9! Almost certainly influenced by hypos, but I'll still take it. No complaints about my weight! Hoorah! But somehow we strayed on to talking about my speaking to Terrence Gregg, and this is where the discussion went - 

Would I like to do a Dexcom trial, since I already used an Animas Vibe?

After wondering if I was having my leg pulled, I managed to respond with a 'Yes. Yes I would.'. Would I like to? Getting the ability to switch on the Vibe's CGM function was, as I have put it several times to different people, a bit like having someone offer me the Holy Grail. Something I thought would never happen - magical and unattainable. If I can't afford a few train tickets to London to take up some of the interview offers I've had, then self-funding sensors was never going to happen. So we put a date in the diary. Turns out that Animas had some funding to run some trials. Everyone knew full well I wouldn't be able to carry on afterwards, but they would let me do it all the same. 

That date in the diary was today.

I was tremendously excited about the whole thing, up to a point where I apparently surprised the Animas training staff. And she's met me before. Several times. You think she'd have known better. So I'll be blogging about how I'm getting on with this trial. Right now I'm having a bit of a weird day with it, but I'm told that is completely to be expected with a new sensor. General wisdom seems to be that it takes a good 24 hours to learn what you're like. I know that's personifying it slightly, but it seems right.

Posted by Becky at 23:55 | Labels: appointments, being thankful, cgm, clinic, HbA1C, pumping, pumps, technology | 1 comments |

Day Two - Already calling in the wildcard for Dream Diabetes Device

 Ooooh doorknobs. How I loathe thee. You are one of my greatest (nemesises? nemesi? Apparently nemeses) nemeses. (There. I look educated now). But seriously, I hate doorknobs. I hate drawer handles, unexpected hooks and things that my pump tubing can coil and catch on.

I was going to say recently, but I suppose it's not so recently now, I moved house. One of the biggest surprises to me was that I was completely outwitted by the way that all the handles on all the doors had suddenly moved from where I was expecting them to be. Especially in the kitchen. The kitchen had turned into a seemingly booby-trapped minefield of pinching, pulling and snagging fun. But regardless of location, if there is something I can get my tubing caught on, you can be sure that I will do it. 

Now, I know there are tubeless pumps. Omnipod, I'm looking at you, but on the whole, I love my Vibe. Yes, I know I said Vibe, not 2020. More on that after the week is over. I love Animas' customer service, I love the product, and I don't really want to switch to a patch pump.I know plenty of people love them, but they seem so huge to me, and I just can't imagine that being comfortable.  But I do wish there was a way to reduce snagging. Particularly when I'm in rehearsals for a show, it can be a real pain to try and negotiate my tubing around costumes, changes, and especially physical sequences. 

I had a fabulous idea suggested to me, and I wish there was a way of making it work. Yo-yo pump tubing. For those moments when you just want to coil tubing away safely, or for when it falls out of a pocket, or the one I'm most guilty of, which is getting up in the night and forgetting you're wearing a pump altogether and down it goes. Tug, ouch, you're suddenly much more awake than you were two seconds ago. I love the idea. Something of a cross between tubed pumping and patches. It all comes with a feel of being very Inspector Gadget. Man, I loved Inspector Gadget when I was younger. Show of hands in comments if you now have the theme tune in your head...and let's be honest here, people.  Now, I know that this would be unlikely to work, because of weighting, and the chances of kinking your line are just too high. But it's supposed to be a fantasy device isn't it? A girl can dream. So I'd love to be a bit more Inspector Gadget. Only a bit smarter, since Penny did all the work anyway...

Posted by Becky at 23:07 | Labels: dblog week, pumps | 1 comments |

I started composing this in my head, and all of a sudden I had that earworm of a Maroon 5 song stuck in my head. I spent a lot of late last summer/early autumn travelling around in a van, and that song seemed to always be on the radio. Along with that awful 'Call Me Maybe' song. But it seemed vaguely appropriate. The Maroon 5 one. Not 'Call Me Maybe'. 

Oh Diabetes, you have long been known to throw a spanner into many aspects of my life, and turn things on their head. You dealt me a new one over the last two months though - I never thought you would be so mean as to brazenly attack my phone bill.

I don't have a landline. I don't think I know anyone of my age who does. Line rental just costs too much, and I'm not home enough to make it cost effective anyway. I have my mobile phone, and a fairly good phone package. Or so I thought. 

I got one of those oh-so-daunting 'Field Safety' notices through from Animas recently. The sort which give the impression of 'you don't need to panic, but you might want to anyway', coupled with 'you don't need to call us, but call us'. Confusing, and somewhat worrying, especially on a Friday night, after office hours. 

So that meant that of course I would give them a call. And as I have found out in the past, if you call after 5pm, you get transferred to America. Which I did, and got to speak with a thoroughly lovely customer service rep. I get amused that I am called ma'am when I speak to the US reps. You just don't get that over here, you really don't. Poor love must have had a hard day, I think. She was just so relieved that I wasn't yelling at her that she couldn't express how sorry she was to put me out enough. She did have to put me on hold for about twenty minutes though. Long enough for me to run a bath and read half a magazine, anyway. She had to call me back the next day, but it turned out that it's nothing to worry about for now, although I will have to have my pump exchanged at some point. I'm keeping my fingers crossed for an upgrade to the Animas Vibe, but I can but hope. 

So I have no problems with Animas' customer service. Their people are lovely and very accommodating. However, their 08000 numbers? That's not free from my mobile, despite supposedly being free phone numbers. Which is what added nearly £20 ($30) to my standard contract payments. Ouch. 

At least everything is fine with my pump. But between that and next month's adventure with calling NHS direct, I can't take any more of this, diabetes! I may have to buy some sort of expansion on my phone package to cover your damages to my bank balance!

Or maybe I could start reversing the charges, at any rate...

 

Posted by Becky at 23:20 | Labels: pumps | 1 comments |

So a few posts back, I told you that I had named my pump Anneka. I also said that I would explain why. So here goes.

I don't know if you guys in the US had anything like this, but back in the late 80's to mid 90's, we had a TV show called 'Challenge Anneka'. Wikipedia seems to think you had something called Challenge America, but dammit, we had it first! 

The premise of the show, if you're not familiar with it, is that the charming all-action heroine, Anneka Rice, would fix some terrible crisis, whilst wearing a blue jumpsuit. She also had a mobile phone, which was a really big deal in those days. The best part of the whole show though, when you were young, was the little animated hedgehogs in the opening credits. Seriously, I always thought they were adorable!

It always seemed that Anneka Rice could handle anything. So that was part of my reasoning behind calling my lovely Animas pump that. But after a number of Borg and robot related jokes, it's also a partial nod to the human name of Seven of Nine from Star Trek Voyager, which was Annika Hansen. Yes, I loved Star Trek as a teenager. No, I'm not really ashamed! But she was always calm, collected, and fiercely intelligent.

So my hope rather was that whichever Anneka/Annika she was taking after would be a good omen. At least they both had jumpsuits in common. Shame that so far, it's been a bit more of a challenge than anything Anneka Rice ever took on. 

I always remembered her building orphanages, and youth centres and the like. Seems that though she did this, she also did some far more bizarre things - 

Anneka has to trick a group of blind people that the wacky sound-effects played on her boombox are taking place in real life, in order to receive a donation to the Calibre Cassette Library.

Anneka has to cut a hole in walled garden in Chiswick to let some victims escape. 

Anneka helps a coward cross the road by building nice things on the other side, such as an ice cream parlour and dog salon. 

Anneka has to organise a tape of music in time for a leaving party. 

and of course, my personal favourite:

Anneka has to convince a group of scared school children that monkeys have not taken over the world and that they are just in a Dorset zoo.

As for me, I'm hoping not to have to challenge my Anneka to do any of these things. However, I have been dealing with an absolutely rotten cold for the past week, which has been making things much more of a challenge. I did mention that I'd been struggling with high scores. After seeing my team on the 6th, we'd made alterations to my basals in an attempt to try and sort things out. Of course the next day, this absolute beast of a cold makes an appearance. 

This is the first time I've been properly ill since my DX, so I wasn't sure what to really expect, bg wise. They've carried on being high despite corrections, putting on temp basals, and such. Thankfully no ketones have appeared. But the problem of course is that I don't want to make any huge changes, because when this cold has gone, it'd be hard to tell whether I'd made too many. So I think I'm just going to have to hang on in there, until it clears up, and make my changes then. 

But in the meantime, I suppose we could terrorise children with monkeys?

Posted by Becky at 17:35 | Labels: anneka, hypers, illness, pumps, type 1 | 2 comments |

Posted by Becky at 22:15 | Labels: appointments, hypers, pumps, sleep, type 1, university, work | 2 comments |

Posted by Becky at 23:20 | Labels: being thankful, dblessingsweek, insulin, pumps | 2 comments |

Here's a blast from the past for those of you who read from the UK, and something to boggle the minds of those of you from elsewhere in the world.

Who remembers Going Live? Ah, Phillip Schofield when he still had colour in his hair, and of course the national institution that was Gordon the Gopher. Saturday morning kids' TV at its 'finest', in that wonderfully tacky late 80's and early 90's glory. Happy days.

So whilst I want to talk about going live, it's not that going live. Maybe another day?

I've been given my date for going live on the pump. Over the phone, I'm still waiting on the letter. But it looks like my 'plugging in day', as the clinic admin told me on the phone, will be Tuesday 23rd November. Wow. That's soon. I'd been thinking that it would have been in December, and pushing it to be happening before Christmas. Stranger things have happened though. 

In the end, I had a choice between three - the Accu-Check Spirit Combo by Roche, the Paridigm Veo by Medtronic, and the Animas 2020.I know how lucky I am to have a choice in the matter, so I spent a long time thinking about it before making my choice. Or at least I think I did. Andrew seems fairly certain I made my mind up pretty quickly, and just didn't want to commit to having made a decision. 

Well, despite having some rather 'interesting' information told to me by the three reps, at an hour that I'd much rather be having my tea/dinner (depending on your part of the country), and the hours of contemplation, I did finally make a decision.

I've gone with the Animas 2020, in 'it goes with everything' black. I was torn, colour wise, but came to the conclusion that I could always get skins for it. 

In the end, the Animas just had an awful lot of features that I liked. I enjoyed the fact it had a customisable database, the low bolus and basal incriments, and I just liked the aesthetic. The screen was large, clear, and didn't remind me of a late 80's text adventure game. The fact that the Paradigm Veo is CGM ready was something that was holding me back, but after a frank discussion with the DSNs, it seemed that with the way the country's funding is being 'handled' at the moment, the chances of sensors being available more freely within the four years I'd be tied to the pump are so slim as to make it rather a moot point. So with that not really an issue, the Animas won out for me.

There were 8 or 9 people in my initial pump meeting, when we met with the different reps. It seemed a mixed group, and I don't think everyone was necessarily convinced about pumping full stop. So it will be interesting to see who comes back, and which pumps they choose. 

I'm not sure how I'm feeling about it all, to be perfectly honest. I thinking having the choice of pump has helped me feel a bit more in control, and I'm certainly more convinced that I was to start with. I just need positivity about the whole process, which I've been getting for the most part from wonderful people on Twitter, and in the real world as well. I know as it gets nearer, I'll become slightly terrified, because that's just the way I am. I just need to get over that initial first hurdle.

Posted by Becky at 14:58 | Labels: appointments, doc, pumps, type 1 | 7 comments |

Posted by Becky at 23:31 | Labels: pumps | 6 comments |

Posted by Becky at 00:27 | Labels: appointments, exercise, fundraising, pumps, the d team | 0 comments |

Just a short one tonight. I sent an email to my DSN earlier this week, covering a few things. One of the points of discussion I also covered back in May, when I talked about my concerns over insulin sensitivity.

Many of you gave me advice on what to do regarding learning more about pumping, and I've been asked if I want an appointment with the pump team to discuss the whole issue. 

I figure it can't hurt to go along and talk to them, right? It's not like I'm committing to anything, and it's not as though I'm wasting their time. It might be interesting to discuss my suitability with them. 

So that's an email to be written tomorrow, then!

Posted by Becky at 22:56 | Labels: appointments, nablopomo, pumps | 1 comments |

I've made no big secret of the fact that I use very small amounts of insulin. My ratios are tiny. I use 1:25carbs in the morning, and 1:35 in the evening, with only 3u of Lantus. Quite often this gets a huge reaction of -cue shockface- 'Whoa, those are TINY amounts!'. Yes, I realise that.

I've always put my small insulin requirements down to the honeymoon period. But the idea has been recently put to me that maybe the honeymoon ended whilst I was looking the other way, and I'm just incredibly insulin sensitive. 

Now there's a thinker. So far I've been approaching this whole thing with the attitude of 'it's awkward and frustrating, but it will end.'. The frustrations of carb counting with massive ratios, and feeling like there's not much that I can do to make any sort of adjustments. Even with a demi pen, it's a bit like trying to crack a nut with a sledge hammer. Or getting rid of adorable truffling pigs for a JCB. At any rate, similes aside, if this isn't going to change any time soon, I might have to do a massive rethink, and possibly a bit of soul-searching. 

My control generally isn't bad. I have a HbA1c that I'm happy enough with (6.2% at last check), and according to my meter, I'm mostly on target. But I'm working hard to keep it that way. You all know this, you never stop working. It's tiring. 

I've also not really hidden that I'm not amazingly keen on the idea of pumping. However, there's a part of me that is thinking that the tiny amounts you can bolus by would be a good idea. But I just can't shake the fact that I don't want to be tethered to something 24/7. It would just feel like a constant reminder of diabetes to me. 

This is awfully vain of me as well, but I don't know how sexy I would feel with a pump. I feel sexy maybe 10-15% of the time, so I worry about diminishing that 10-15%.

If anyone has any opinions on whether pumping is something I should think over some more? I have an appointment with my DSN coming up in the next month or so - I can bring it up with her then. But I'd just love some thoughts on the matter.

Posted by Becky at 20:53 | Labels: appointments, HbA1C, honeymoon, injecting, nablopomo, pumps | 8 comments |

A fortnight ago, I was fortunate enough to go down to London to take part in festivities for the second birthday of the fabulous Circle D. I had a really wonderful time, despite feeling very rough. The sun shone, and I got to meet some fabulous people, including Northerner from  'Poems from Active Diabetics', Tom from Diabetes Dramas et al, and Siobhan from Click of the Light. It was about as close to a UK Dbloggers meet as we could hope for, really, when it was actually for something else!

Tom has recently become the (extremely) proud owner of an insulin pump. The last time we met, which was in York in March, Tom had said that he would bring me an infusion site to try wearing, so that I could see what I thought of the whole thing. 

Well, he did. And we filmed it, whilst getting the dirty stink eye from a woman opposite us. Siobhan is doing the camera work, and I ask you to forgive me for the following:

A: Being extremely nervous

B: Laughing rather hysterically

C: Being a complete wuss.

The London meet in itself was interesting. I had never had the opportunity to see an insulin pump before. So it was very educational to meet several people there who were all more than happy to show me theirs. On the whole, they were smaller, lighter, and more discreet than I had anticipated them being. I have very small hands, and yet most of them fitted in my palm.

So at the end of the day, I went away with this on, and proceeded to leave it in for the three days that I'd been told was appropriate. 

It was a very strange experience. After Tom had put the site in, it didn't hurt, like I thought it might, rather I found it itchy. I don't know whether my skin didn't like the adhesive on the tape, but it itched. 

Tom had also given me a shower cap for it, so I wasn't wearing the tubing attached to nothing. It would have been another thing I would have been interested in doing, but wearing the tubing attached to nothing just seemed stupid. So I kept the shower cap on. And I showered, and slept and went about my daily business with it on. I intrigued/freaked out/enlightened people (delete as appropriate for the different reactions) with the site. 

I was terrified of getting the thing wet, or ripping it out accidentally whilst I was asleep. But neither of these things happened, as was proved by I woke up with it still attached, and showering was fine. But I was still conscious that it was there for about 70% of the time. I know that means that 30% of the time I didn't care, or completely forgot, and you would probably get over that if you were actually wearing a pump, not just flirting with the site. One other thing I would hope you'd get over is the urge I found to play with the site. Mostly taking the shower cap on and off. But then again, I'm a compulsive fidgeter. I play with keys, I chew and pull out my hair, and up until recently, I was a terrible nail biter. I don't know whether that would marry well with something like a pump that you shouldn't really fidget with.

What I was really afraid of though, was taking the site out. I didn't have anyone to help me with that! Was it going to hurt? Could I do it 'wrong' and accidentally leave something in? I was all set to see if I could find something on YouTube to help me, but I thought I'd give it a go solo first, and seek help if I ran into problems.

Well it seems I had built it up in my mind to be this huge thing, which it wasn't at all. It didn't hurt me any more than removing a plaster. I was surprised to see blood in it, but I don't know why. Makes perfect sense, really. The thing that really had me slapping my forehead and feeling like a prize idiot though, was the fact that what I was removing was actually NOT a needle. Of course it wasn't! But I had always believed that there was a needle inside the infusion site. Like I say, my contact with pumps had been virtually non-existent, and not being in active pursuit of acquiring one myself, I somehow had this misconception. Why would there be a needle? It would be far too easy for it to break off inside you, which would be perfectly horrifying. I guess that goes to show you that anyone can get the wrong idea about something, being as I consider myself fairly well informed on most things diabetes-related. 

But will this experience, which allayed an awful lot of my fears surrounding pumps, convince me to seek one out for myself? I don't think so. I find the whole thing fascinating, I totally support those out there who are after a pump for themselves, and maybe in a couple of years I'll join them. I can see the pros. I'm getting tired of injecting, because my technique seems to have got a bit rubbish as of late, and I'm finding it hard to find a spot or an angle which doesn't hurt. Yet, I don't think I'd be ready any time soon to make the leap of being tethered to something 24/7.

I'm currently taking part in a course at my hospital called 'Living With Type 1 Diabetes' (catchy!), and apparently we're going to get a chance to have a look at some pumps, and talk to a couple of people using them. So my pump education continues!

Posted by Becky at 20:07 | Labels: friends, INI let loose, injecting, nablopomo, pumps, reviews, sieve brain moments, technology, vlogging | 6 comments |

Damn you digestive biscuits. In the past few days, you have taken me from 2.8 mmol/l to 11.2 mmol/l (although that was with some glucotabs. I would just treat a hypo with digestives. That would be dumb) and from 4.6 to 11.4. I do love you, but you're not even my favourite biscuit. That second time around, I just wanted a biscuit. These days, you
tend to be the only ones I have in the house, being as two of you make up the ideal amount of long acting carb needed post-hypo. Or so I thought. 

It's times like that, when you just fancy a biscuit, or don't fancy drinking some silly isotonic sports drink whilst exercising, that I can see the attraction of a pump. Being able to bolus tiny amounts, and adjust your basal rate to 200% or 0% would be rather useful. 

I know a lot of people who are either on pumps, are waiting for them, or are trying to get on them. One of the first things I remember someone saying to me after my D-day was 'If you get offered an insulin pump, you want to take one.'. But do I want one? No, not really. I know I'm still new into this, and my mind might change on the matter, but for me personally, I don't think it's something I would want. 

As I said, I can see the pros. But I just wouldn't want to be permanently tethered to a piece of equipment 24/7. I have my other reasons, but right now, that's a big one.


Maybe down the line, who knows?

Posted by Becky at 22:27 | Labels: bolus, food, hypos, nablopomo, numberwang, pumps, type 1 | 0 comments |