Wednesday, 25 August 2010If you've been talking to me on Twitter over the last few weeks, this isn't going to come as a huge shock. I know there are some who I haven't told though, and I haven't really publicly announced my decision to those I've been talking to.Well anyway, a while back, I talked about the fact I'd been thinking about pumping, and whether it was something I should consider. Lots of you gave me some really wonderful advice.
Then I sent an email to my DSN, who sent me one back. Not long after, I got an appointment with the nurse who deals with pumps. That has since been and gone. I didn't want to lose momentum with or distract from The D Team fund-raising, so I didn't mention how it went. The bottom line though, is that I've been offered a pump, to start at the end of October/start of November.
It's been mentioned to me by various people (not that I wasn't already aware of this) that I don't fit the NICE guidelines (that link might be interesting reading for those in the US). This is true, and I don't deny it. I went to my appointment with this in mind, and just with the attitude of wanting to know more about pumping. What ended up happening was quite interesting.
The DSN who deals with pumps at my hospital couldn't be more lovely. I told her about my concerns about my insulin sensitivity, and how I was beginning to lose my initial hypo awareness. This is true, although it's something I don't think that I've really discussed on here.I also told her that I was unsure about pumping - I wasn't convinced with being attached to a device 24/7. I was open about that from the beginning.
We discussed my general control, lifestyle, frequency of testing, that I was starting an MA fairly soon, and how that might disrupt patterns that are easier to keep at the moment. She told me that she was impressed how much I already seemed to know about pumping. Then she asked if I wanted her to take my case to the review board. In her words, I 'don't strictly qualify, but you're clearly working very hard to get good results. You're smart, pro-active and educated. Why should you be denied the gold standard for working hard? I could tell you to let your A1c slip to make it easier to qualify, but I wouldn't do that, and I don't think you could either.'
So thinking that my case would get turned down, I said go ahead. Then two days later, I got an email saying I'd been approved. I think I sat staring at my laptop for a good minute before moving or saying anything. I hadn't been expecting that at all. Trouble was that now they'd said yes, I didn't know what to do. Like I said during my appointment, I've never been wholly sure it's right for me. I was scared. Still am, if I'm completely honest.
Since then though, I've done a lot of thinking about it, and I've decided to go for it. I'd never forgive myself if I didn't even try, and I might never get the opportunity again. So now that I've said yes, what now?
Well, it seems that my clinic isn't specifically tied to one sort of pump - they have people using Roche, Animas and Medtronic. I get the general impression that if I give a preference to a particular model, they'll try and accommodate that. So I've been doing some homework.
Looking at the different pumps, I've mentally ruled out pumps by Roche. Now, I have no personal experience with Roche products, but from things I've heard from friends, I don't think these are appropriate for me, for various reasons.
So that leaves me with the Animas 2020, and the Medtronic Paradigm Veo. I've got pros and cons for each in my mind, but they're coming out mostly tied. So, since you guys gave me such wonderful advice last time I asked about pumps, I'd really love to know people's experiences with these two companies and pumps. Negatives as well as positives. What are the features you love, and what would you like to change? What would you tell a novice pumper that no-one ever told you (and you wished they had!)
The floor is open!
Thursday, 19 August 2010There's been a lot of things said about the Channel 4 documentary 'The Hospital', and its episode on young diabetics. It aired on Monday, and I missed it. I have only just had the opportunity to watch it online, write some things down in my notebook and collect my thoughts.
For those of you who haven't watched it, or are in the US/elsewhere and have no idea what I'm on about, the show was set within the clinic of one hospital, and followed the stories of a group of young diabetics. They seemed to be between 15-26, and all either had complications, or paid little attention to their management.
Most of you probably know that my background is in theatre. I've been interested in it since I was about five years old, and I've been studying it for the majority of my adult life. So I'm not coming at with no understanding when I make the following observations:
I know why they formatted the show the way they did.
Drama springs from conflict. This is not a rule that has no exceptions, but for the most part it holds true. Particularly for a show like this. They picked case studies from the extreme end of things - of course they did. It's shocking. It provokes discussion.It's shock and horror for those who know little or nothing about either type of diabetes, and it's a short, hard, jolt even for those who take the management of their diabetes extremely seriously.
Understanding of such decisions aside, it was not easy viewing. The young people that were interviewed had a variety of issues and complications, all in different stages.
One of the young people followed was Francesca, a 15 year old Type 1. During the programme, the narration told us that it had been months since she had tested. That jars with me on a personal level so badly. If you told me I couldn't test for a day, I would struggle with that.
A later scene showed her testing, after finding a (what I assume to be) spare meter in a drawer, which said she couldn't even remember how to use (I believe it was an Optimum Xceed, but I could be wrong.). The meter read 'HI', a result that did not particularly seemed to faze her. She then went outside for a cigarette.
They did show a visit that she had from a community nurse. In general, I don't like to be overly critical of healthcare professionals, as I know that their job is both complex and demanding. However, there are many that you can come across that just don't approach things in the appropriate way. This was one of those instances. If a random reading from your meter is 'HI', then perhaps advising that young person that she might want to think about testing her levels "during the party season", if that's "all right", might not be the best course of action.
Francesca admits to being a binge drinker. This and under-age smoking bothers me intensely. She says that what she wants to do is "socialise", but this appears to be limited to getting drunk with friends. At the age of 15. I know children are drinking and smoking at a younger age, but this makes me incredibly sad, and I don't want to come across as judgemental, but I would really love to know where the parental influence is in these situations. Where are these children getting money for alcohol and tobacco?There were only two parents interviewed during this show. Both I found to be infuriating, if I'm honest. Francesca's mother did, in my opinion, have her priorities all wrong. Her biggest concern seemed to be the possibility her daughter's poor control might cause infertility later down the line. This enraged me. I have great sympathy for those who deeply desire a child but are unable to have one, but it is not the biggest tragedy that could happen to a person. Surely having your daughter alive and well is more important than currently non-existent future children? She also said that Francesca had been "left to control it herself, really.". I know, thinking about myself at age 15, I doubt that I would be able to handle the complexities of a chronic illness like diabetes.I'm stunned that she's willing to turn it over to a child in that fashion.
The other mother that they interviewed was the mother of Yasmin, a Type 2 diabetic, who I believe was 17 (please do correct me if I've got that wrong). Her understanding of the way diet and nutrition is such a vital part of diabetes management would have been laughable if it hadn't been quite so alarming. Yasmin was recovering from an abscess in her chest, and had been strongly advised that she needed to lose weight. Her mother served her a large amount of rice and potatoes accompanied with several lettuce leaves and stew, and considered that to be a balanced meal. She also then complained that healthy eating was too expensive. Again, that bothers me. Healthy eating does not need to be an expensive thing. I don't claim to be an expert on Type 2, but there just seemed to so much wrong with that situationOther cases were shown, such as several young, pregnant women, and a 26 year old with final stage kidney failure, who was waiting for a kidney and pancreas transplant. Other things that were shown were the amputation of a toe, with no warning and in graphic detail. I'll be honest in saying that seeing that made me want to run away and hide. These were all important things for me to see, and I'm sure for many others. They certainly weren't pleasant or easy things, but seeing what could happen motivates me to make sure that it does not.
I'm not a believer in scaring people into submission. You shouldn't operate out of fear, because that's no way to live your life. But living with realisation of what could happen, and being motivated to prevent it? I think being armed with the facts is important. Ignorance might be bliss, but knowledge is power. It's unsettling to hear these young people, saying "I haven't thought about the long term at the moment...I'm not bothered". I remember back 10 years and being 15 - at that age, it's hard to imagine being 25, let alone 45, 55, 65. Something has gone terribly wrong in the system though, if at such a young age, your future self and their health is so way off your range of thought that you'd rather "go back to my more important priorities" (which the show implies to be getting drunk with friends).
I know that I've never been a child or a teenager with diabetes. This is actually something I'm planning to write about next week. I don't know what that's like, and I never will. But I refuse to believe that the actions of these teenagers are purely their fault. Rebellion is one thing, but there seems to be something missing. There seems to be the option of education - the programme showed what appeared to be a clinic with multiple healthcare professionals available on what appeared to be a drop-in basis. I don't think it's necessarily fair to expect a young person who is in all intents and purposes still a child to be entirely responsible and pro-active about their healthcare. Some independence can only be a good thing, but somewhere a link in the chain is breaking down. Hopefully programmes like this might be able to start shedding some light on where the problem lies, and how our healthcare system can address it.
The doctor who was interviewed for this, Dr Richard Savine, has come under a lot of criticism from comments online. He's been accused of being patronising and generalising diabetics with sweeping statements. I personally don't agree. What I saw was a man who has been trying to get through to his patients for a long time, and is tired. I heard nothing from him that got me worked up, or angered me in any way. Yes, he made comments about other young people looking at young diabetics as "damaged goods". Not the best phrasing in the world, perhaps, but he didn't make out that these were his views. I thought that he seemed to be doing all that he could with patients who did not, for whatever reason, seem keen to listen to what he had to say.
Admittedly, the narration of the piece left something to be desired. I would have been happier if there had been stronger and clearer explanation of the differences in the two types, and each young person introduced by with the appropriate type, as only Yasmin, the young lady with Type 2 seemed to be identified by her type. I'm not a huge fan of 'diabetes' as an umbrella term. We're all one community, but there are fundamental differences which the public are not always best educated on. Until these differences are explicitly understood by the public at large, I'm of the opinion that the definitions should be repeated. This might take some time, but if we keep on repeating, we might well get there.
So on the whole, I feel that The Hospital has perhaps had a reception that it didn't deserve. It had its faults, and there was definite room for improvement, but if you watched it with the understanding of the type of show that it was, then that brief was filled. It was never going to be a positive, sunny show, displaying people with good management skills handling their diabetes well, overcoming day to day issues, and accomplishing amazing things. I hope that one day that will see the 'light' of broadcast time, but for now? There's not enough conflict in it. Conflict is drama, and drama is what the makers of The Hospital were after.
Wednesday, 18 August 2010Well, I promised you all footage of the event, and here it is!
It turned out to be a glorious day, despite our fears (and best intelligence) that it was going to throw it down with rain. We had a few mishaps, some of which you can see on here, but mostly yours truly having a giant freak out on a cargo net after losing balance. I also had to wear a lovely 'special' harness done up with a wrench (sponsor us some more, and I'll show you footage of it being taken off!) because there was a 'risk I could pass out' whilst on an obstacle.
But here we go!
Sunday, 15 August 2010So today was the day. And we did it, in surprisingly nice weather after a Friday and early Saturday morning full of heavy downpours.
We got plenty of footage, and I'll be putting together a film over the next couple of days to show you what we got up to. For now though, as we've reached the 50% mark, which is amazing, it's important that we take a moment to say thank you, and think why we're doing this in the first place:
Friday, 13 August 2010OK, YouTube is evil and will not let me upload this one. But I really want you guys to have a chance to see it.
However, Andrew "Hannibal" Dyer is a GENIUS, and managed to host it elsewhere :D
So if you would like to watch it (which I hope you will), just click here
Wednesday, 11 August 2010Uploading on YouTube is REALLY slow! This was filmed, and would have otherwise been up last night if it hadn't been for the rate of upload.
Catch a glimpse of a rare thing - Andrew "Hannibal" Dyer has a go at presenting!
Sunday, 1 August 2010Well all, I'm now back at home. It has been a real joy to have all the wonderful guest posters here for the last week, and I'm thrilled to be putting up the final one.
As I was throwing the last pair of socks into a bag, and almost forgetting my hairbrush last Saturday morning, my laptop pinged at me to let me know that I had new mail.
It was so annoying that I had only five minutes to get out the door, and a week's worth of filtered internet access that wouldn't let me do any more than check my email, has meant that I've had to wait until getting back home to put up this wonderful post!
I was thrilled that Cherise agreed to end this series of guest posts, and she's done it in style, with a great piece on the DOC and social media. So I'll stop wittering on, and let her take over!********************************************************
I would like to thank Becky for inviting me to her side of the world! Thank you for allowing me to write a guest post.
Stand by me
The other day I came up with an idea. I spoke to Scott (husband), Scottie and George. The idea was hit with all of them so I decided to go ahead with it. Where to start? I wasn't sure. Who would participate? I did not know. What if it flopped?at least I could say I tried.
I wrote a blog post to introduce Diabetes Social Media Advocacy (#dsma) to my friends, the Diabetes Online Community. I hit publish. I waited. The comments made me smile because my friends wanted to standby me and support @DiabetesSocMed.
July 21, 2010 at 9 PM #DSMA made it's Twitter debut. There were a total of 77 people from different walks life, type 1's, type 2's, parents of children with diabetes and even a doctor. I was watching the tweets from my laptop, tweeting with my ipad and retweeting with my iphone. I could barely keep up! It was touching and FREAKING amazing!!! We discussed, vented, laughed and made new friends. I like to think of it as an hour of sweet goodness, education and awarness. It was sweet because of you (the DOC).
Thank you for standing by me and helping take our community to the next level. I can't wait to tweet with you all on Wednesdays. Diabetes Social Media Advocacy (#DSMA) was my idea but it was brought to life by you.
And with that great post, I finish off a great week of guests. Thank you to each of you who've filled in for me this week - I'll gladly do the same for you any time!
I'm absolutely exhausted, but if not tomorrow, then certainly by Monday, we'll be back to 'regularly scheduled programming'