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  1. Going Live

    Tuesday, 26 October 2010

    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.

  2. Where have you gone, Joe DiMaggio?

    Thursday, 21 October 2010

    A few weeks ago, I found myself listening to one of my favourite songs of all time. That's 'Mrs Robinson' by Simon & Garfunkel. A classic if ever there was one, in my opinion. Now, I normally pride myself on being fairly good at really listening to song lyrics, and thinking about the meaning - that's why they're there after all. But as I sat there listening to the song, I realised I'd never really listened to the lyrics. And when I did, I found the song taking on a whole new meaning. I'd never properly clocked that it was supposed to be about a woman dealing with alcoholism. Neither, it seems, did most people that I'd asked. 

    Now, I know this doesn't seem like I'm going anywhere with this, but get on board and go with me - I promise there's a destination!

    The line which I found myself being drawn to again and again though, was the line about Joe DiMaggio:
    Where have you gone, Joe DiMaggio? Our nation turns its lonely eyes to you.

    I poked around online for a while, and found an analysis of the lyrics (which was really interesting reading). It talked about this part in particular. How DiMaggio himself had been confused by it. As he said, he hadn't actually gone anywhere, so what was it referring to? 

    The analysis says how DiMaggio was considered "the quintessential secular American hero-savior", who was widely idolised, was handsome, charming, talented and 'got the girl'. He was a pop culture hero, who was fading from the spotlight as he stepped back from baseball. 

    So where am I going with this? Well, at the time I was thinking about this, there was an awful lot of talk of how every time diabetes was talked about in the public eye, it was all negativity. When I wrote my review of The Hospital I addressed some people's complaints that there was not enough coverage of people being responsible and doing amazing things whilst living with diabetes. As I said, it wasn't the place or the time, and it certainly wasn't the goal of that show. But the thing is, there are so many people living with diabetes out there who are doing amazing things. There are people taking on incredible challenges. Look at Team Type 1, look at my wonderful friend Ginger Vieira, who is a total inspiration to me. Look at all the others forming the list that's so long it's ridiculous. But then do something else.

    If you're living with diabetes, whether it's your own, or your loved one's, do something for me.

    Look in a mirror. 

    Go do it now. I'll wait. 

    ........welcome back.

    What did you see? Not sure? Well, do you know what I see? 

    I see a hero. I see someone who doesn't have it easy, but who is still here. Who hasn't given up. You're doing amazing things - whether you're climbing a mountain, or remembering to test - you're Joe DiMaggio. And our 'nation' turns its lonely eyes to you. 
    Oh. And to sum it up, I turn it over to two videos, both of which say it better than I ever could.

  3. Finding Neverland & The Velveteen Rabbit

    Saturday, 16 October 2010

    At the start of November, I will have been doing this whole diabetes thing for a year and a half. Whether you think that's a long time or not is, I think, a matter of perspective. You can accomplish a whole lot in a year and a half. To channel my musical theatre nerd for a moment, let us consider Rent. There are many ways in which you can measure a year. They suggest a whole variety of things, but also measure a year as 'five hundred twenty five thousand, six hundred minutes'. So half that again would be... according to Google.... 788 923.149 minutes. Yes I googled it. That's far too much maths to be doing in my head on a Saturday. 

    My point being that if you look at a time like that, it suddenly seems like an awfully long time. On my part, dealing with T1 has become such second nature in a lot of ways that it feels strange to think about 'the time before', because that's almost like another person these days. But that's how I look at it. Other people will see it differently. And that's what I really wanted to talk about. 

    So I have Type 1 Diabetes. Big revelation there, but it's true. I was diagnosed at the age of 24, and apparently 'well past' the prime age for T1 diagnosis. It does seem that T1 is thought of by many as a 'kid's disease', being that yes, the prime age bracket for diagnosis is childhood, and for heaven's sake, it used to be called Juvenile Diabetes. What does that mean for the rest of us? Kids with T1 grow up. Adults get diagnosed with it too. I know I'm not the only one who was diagnosed outside of childhood or puberty. 

    I remember being in hospital after being diagnosed. A doctor (who is now my consultant) came and asked me if I wouldn't mind talking to some medical students. Because I was 'unusual', and they 'almost never got someone being diagnosed outside of childhood.'. I was put on metformin as well as insulin at the hospital as well. Because I was clearly in DKA, but they still weren't sure I was a T1 for a couple of days. Because I was 'too old'. This did make me feel just a little bit like there was something wrong with me. Apart from the whole broken pancreas thing, obviously. 

    Like I say, I know people who were diagnosed outside of childhood, but the majority of T1's that I know were diagnosed as children or teenagers. They're the norm. So what does that make me? 

    I've thought long and hard about how to say what I'm about to say. Sometimes life as a T1 diagnosed as an adult can be a bit 'lonely', for want of a better word. You were never a 'child' with diabetes, and as far as I know, my mum and dad have never sat up at night thinking about my diabetes. They've never had to 'deal' with it - it's always been my thing (please feel free to jump in if you feel I'm wrong, Mum, since I know you'll be reading this!).

    I have heard from various sources that I 'don't understand', because I never had to deal with growing up with D. I'm an adult, and I've not had their many years of experience. But that doesn't mean that I don't know a thing or two. I've been dealing with this myself since day one. Sure, I've had a lot of help from wonderful people, but the shoe drops with me and no-one else. Just because I haven't been doing it as long, doesn't mean that I don't know what I'm doing. 

    I was amazed this summer, watching twitter, and reading the many blog entries about
    CWD: Friends For Life Conference. I had always assumed that this event was....well, for children, as the name does suggest. I would never have considered attending, because I'm not a child with diabetes, nor am I a parent of a child with diabetes.  But then I saw all the reports coming in about it (and the Roche conference, but that's another case entirely!). And I wished I was there. I think it's about needing a sense of belonging.

    I will never be able to reminisce with you about 'way back when'. I never went to diabetes camp. I never had to deal with teachers not understanding. I never went to a prom or graduation and worried about it. But we're all here in the same boat. We all have 'Lost Boy' pancreases (pancrei?). One day they decided not to grow up, and all ran away to Neverland.  We have the pancreases that never grew up. Mine just ran away a little later. And despite that, I'm here, and I'm on the same journey with you. I test, I carb count, I inject. I hypo, I hyper. I get blood drawn, I think in numbers. It's like in The Velveteen Rabbit, which was one of my favourite books as a child. I do all these things that you do as well, whether you've had T1 since childhood, or if you're like me, and joined in a little later in the game. Regardless of the starting point, we're all real.