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With the craziness that was World Diabetes Day and its associated activities over, this morning I’m chilling out in the relative calmness of the RACV Club, Melbourne. It’s the Kellion Medal presentation and I’m about to meet people who have lived with diabetes for fifty or more years. I wrote about last year’s Kellion celebrations and thought I’d revisit the post today.
Today is my favourite day of the work year. It’s the Kellion Victory Medal award celebrations where we acknowledge people who have lived with diabetes for 50, 60 and even 70 years. Just stop for a minute and think about that. Seventy years with type 1 diabetes. Now think about what diabetes was like back in 1940: urine was boiled, needles were sharpened. Home blood glucose testing was still about forty years away, modern insulins hadn’t been considered. Insulin pumps, of course, were things of the future. read more….
Today, I’m seeing blue everywhere I look. Admittedly, that could be becuase I am wearing blue jeans, a blue shirt, a blue ring, a blue necklace and, terrifyingly, blue mascara. 
And I can’t help but notice how much blue there is in our world. Today, the Melbourne skies are a particularly bright blue which made me smile as I opened the blinds in my bedroom. Even Mother Nature is celebrating Blue Fridays and raising diabetes awareness!
My daughter’s school uniform is dark green, but today she has soft blue ribbons tying up her ponytail and a blue circle pinned to her school dress. And she’s more than ready to explain why to people. ‘It’s about diabetes awareness. It’s important people know about diabetes’, she told me earnestly. Sure is, kid.
Cherise Shockley is the founder of the Blue Fridays campaign. She’s one of those people whose passion and commitment to diabetes is incredible. And she’s an amazingly nice person as well. Read all about the campaign here.
Wearing blue on Fridays throughout November is an easy way to get people thinking about diabetes, but you need to do more than just throw on a blue scarf (oh yes – I have one of those with me, too). You need to tell people why you are wearing blue, what it means, why it’s significant to you. Post a photo on your Facebook page and tell people why you’ve put it up there. Tweet a photo with the tag #BlueFridays. Ask people at work to adopt Blue Fridays for the rest of the month. By doing these things, people will be talking about diabetes – it’s a way to get diabetes front and centre of people’s minds, for them to think about donating to diabetes causes, to think about getting themselves or a family member checked for type 2 diabetes, to think about the symptoms of diabetes.
Next week on World Diabetes Day, the world will be lighting up in blue as monuments across the globe take on a blue hue. You can read about it on the IDF website. Keep an eye out for iconic buildings in your city.
Go get your blue on! And get talking!
Today at Diabetogenic Paul Buchanan is guest blogging for me. A couple of months ago, Paul asked me to guest blog for him. You can read that here. Paul has lived with type 1 diabetes since January this year and because he’s not the type of guy to sit back and wait for things to happen, he set up the #GBDOC Twitter and Facebook pages and a website, too. A couple of months ago, Paul asked me to guest blog for him. You canead that here. I was lucky to meet Paul at the EASD European Bloggers Summit earlier this month. There were lots of girly squeals (both of us) when we met. Take it away, Paul!
Ok, so I was diagnosed in January 2012 with T1 at the age of 44 – a bit of a shocker – but then it would have been a shock at any age. And another thing, I’m a grown up! I’ve had to deal with some pretty serious things in my life so far, work, travel, relationships – I’ve got a few scars, I’ve been around the block a few times, so dealing with ‘the D’ shouldn’t be too tough, right?
I mean, I really am a lucky guy, ‘cos almost immediately I found the #doc (the Diabetes Online Community) and wow – talk about support! There isn’t a question I can’t ask, there isn’t an issue I can invent, there isn’t a problem that exists that the #doc hasn’t got an answer for. When I say “an answer” I really mean a thousand voices all crying out with advice and love and empathy!
And another thing, talk about technology! 2012 and I’m on these tiny weeny little 4mm 32 guage needles that mostly I can’t even feel going in (there is the odd ‘screamer’n’bleeder’!), I’m queuing up for a pump and will get CGM just as soon as those tight-fisted buggers at the NHS realise how much of a difference it makes in quality of life and start to fund them properly over here.
I’ve got mobile apps that help me track, well, everything really! I can email and text my Nurse Consultant (she is a goddess amongst HCPs). I’m back in training having now done my first triathlon, I’m signed up to do a 70.3 ‘half’ Ironman in 2013 and life is good!
So, yeah, bloody lucky!
Being a ‘grown up’ with a few years under my belt I don’t give a stuff if other people are offended by me testing or injecting in public, in a restaurant or in the shops! I have no issues with telling people or answering questions, probably ‘cos it gives me chance to show off how much I’ve had to learn in the last six months, and I have never had to be a child with D. I have never had to feel different, never had to be treated differently, never had to worry about ‘being just like everyone else’. To all of you who were diagnosed as children, I salute you. That you not only ‘survived’, but that you are all now a part of the #doc and so willing to help others is a testament to one of the demonstrable upsides of living with a chronic condition – you are all better people than nearly everyone I have ever met, and I am proud to be a part of the family.
Lots of Love
@T1HbA1c
Thanks, Paul! You can read more from Paul at his blog here. The #GBDOC Twitter chats take place on Thursdays at 7.00am AEDT. You should sit in – they’re a very amusing bunch!
The app mentioned above in Paul’s post is MySugr. I had a look at it when I was at the European Bloggers Summit and can’t wait for it to be launched here. It’s great to see a diabetes data tracking app that has been developed by folks who ‘get-it’. I’ll let you know once it’s available in Australia.
Back in March of this year, Austroads and the National Transport Commission released their updated Assessing Fitness to Drive; medical standards for licensing and clinical management guidelines. This document refers to commercial and private vehicle drivers, so the information is relevant to people living with diabetes that hold (or are planning to hold) a drivers’ licence.
I live in Victoria, so our licensing body – VicRoads – requires that I complete a medical review form every two years. This is done in consultation with my doctor, and the form asks about hypos, changes in eyesight and other issues that may impact on my ability to drive safely.
Because I’ve had few changes in my diabetes that have affected my driving, filling in and returning this form is a pretty straight-forward matter. As long as the completed form is returned to VicRoads by the due date, I’m given a ‘conditional licence’ and I’m good to drive for another two years.
So I was expecting that the new Assessing Fitness to Drive guidelines would not really need much consideration. The guidelines cover some important things about diabetes and driving. There’s information about hypoglycaemia and impaired hypo awareness and a rather confusing flowchart to explain the processes to getting a conditional licence.
But then, in the section titled Medical Standards for Licensing we come to section 3.3.2 Satisfactory control of diabetes which states:
When assessing whether the criteria for a conditional license are met, ‘satisfactory control’ of diabetes will generally be defined as a glycated haemoglobin (HbA1c) of less than 9.0% measured within the preceding three months, as against a general goal of less than 7.0% in people with diabetes.
Whoa! What? Does this mean that if for any reason an individual’s HbA1c is above 9%, their treating doctor may refuse to complete the review? Well, apparently yes. I have been contacted by several people with diabetes who have had their licence suspended because their treating doctor refused to fill in the review based only on their above 9.0% HbA1c.
Where is the evidence suggesting that an elevated A1c will negatively impact on driving ability? I have searched and simply cannot find anything. Some people may experience blurry vision with elevated BGLs, but that is usually short-term, and ‘fixes itself’ once BGLs lower.
I can find a lot of journal articles about the danger of driving for those experiencing impaired hypo awareness. But nothing, nada, not a thing about driving with an A1c of 9.0%.
I’d like to know where that magic number came from. How is 9.0% deemed unsatisfactory control of diabetes, but not 8.8%? It appears to be an arbitrary number value that is having considerable impact on people with diabetes holding a drivers’ licence.
Disappointingly, there was no consultation in the development of these guidelines. Yes, the diabetes chapter of the guidelines were reviewed by the Australian Diabetes Society Driving and Diabetes Working Party. There was absolutely no engagement with any Diabetes Australia body across Australia. Which meant that there was no one considering the consumer side of things. All input has come from clinicians who, at times, have little understanding of ‘real life’.
Diabetes Australia is seeking clarification of these guidelines and I’ll keep you posted with what I find out. But in the meantime, if you have been unable to get your licence renewed because of these new guidelines, let your local Diabetes Australia office know.
Have you been affected by the new Assessing Fitness to Drive regulations? I would be interested to hear from anyone who has.
Last week, I sat glued to my Twitter stream watching the tweets from two separate events that had a strong diabetes consumer (or, if you prefer, patient) presence. Firstly, there was the Roche Diabetes Summit (#RDS12) which brought together 34 diabetes bloggers from across the USA. You can read some terrific reports about the summit here and here.
Immediately following the Roche Summit was the American Association of Diabetes Educators (#AADE12) Conference. Once again, the Twittersphere was full of commentary about the different sessions, blogs were written and Facebook pages provided reviews and photos from the conference. I learnt a lot about what was going on, what new things were catching the attention of members of the diabetes online community (DOC) and I noted things that I want to speak with my endo about next time we meet.
Coming up later this month is the Australia Diabetes Educators Association/Australian Diabetes Society conference. I’m going which is pleasing on a number of levels, not the least of which is that it is on the Gold Coast which will mean some slightly warmer weather. The main reason I’m excited though, is because I will be able to ‘report back’.
How many consumer advocates will be attending the Australian conference next week? I’m guessing not too many.
You may ask why it’s important to have people with diabetes at these events. It’s a valid question. I mean, the events are for health professionals to do some professional development, some networking and find out the latest in the diabetes world. The sessions are not designed for consumers, really.
And that’s all relevant and true. But how does the information presented at these conferences then get filtered through to people living with diabetes? How do we find out about the latest and greatest, the new research, the new studies? In all honesty, how many of us have health professionals who relay this information back to us?
My endo is one of the few that actually does. We speak about conferences she’s attended and new things presented. In fact, part of my screening (read: interviewing) process when I look for health professionals is to ask what conferences they’ve attended recently and what they’ve found interesting. It gives me an idea of how up-to-date their knowledge base is. But more importantly, it gives great insight into how well they then pass on that information.
So, let me ask again: Why is it important to have people with diabetes at these events? It’s critical, because it means that the information gets passed on to us – the people living with it. Which better informs us. Which helps us make decisions about our care to improve outcomes.
There needs to be a shift in Australia. People with diabetes need to be part of the planning of conferences. If we are (or diabetes is) ‘the problem’ then we need to be part of – actually, leading – the road to the solution. I wrote about this last year, but as each year passes, and as I see more and more evidence of consumer involvement in other countries, I wonder why we seem to be so behind the times.
We need to be there in numbers and we need to be recognised as a way to get messages out. It’s a revolution in terms of the place of consumers. But our rightful place is front and centre at information sessions talking about the condition with which we live. And the time is now.
So, with this in mind and knowing that I’ll be at the ADEA conference later in the month, what is it that you want me to report back? Have a read of the program and in the comments section below let me know if there is anything you want more information about. And I’ll try to get to the sessions, tweet and blog about it.
This is the tale of the time I took myself of to Accident and Emergency (A&E). This is not a decision I take lightly as there are a million things I’d rather do. Like saw off my own leg, puncture an eardrum or attend a meeting of an anti-vax conspiracy club. But I’m writing about it because it was a crap experience all around and I’m interested to hear how others have dealt with similar situations.
So, here is the good thing about having type 1 diabetes. I walk into a heaving A&E waiting room. There is blood (the guy in the corner holding his head), guts (a woman near the front throwing up hers), tears (the old woman with her daughter) and silence (most of the other people). I tell the triage nurse the situation which sounded something like I have type 1 diabetes, I have been vomiting for the last three hours, I have ketones of 4.8 and my last BGL was 12.8mmol/l. The triage nurse takes one look at me and opens the door to let me in. Like it’s 1991 and I have a gold medallion to the Underground nightclub. Straight into the VIP room!
Unfortunately, this VIP room is lit with unflattering lighting and instead of comfy lounges I lie on a trolley. I am seen by a couple of brilliant nurses who put in an IV line and ask sensible questions and say sensible things like ‘Of course you can check your own BGL. Would you mind telling us what it is when you do it?’ I have two new BFFs and I want to take them out for ice cream – perhaps I’ll wait until the ketones have cleared, though. I tell them that, according to my sick day protocol, I have upped the basal rate on my pump and have given myself a correction bolus which is already working as my BGL is now down to a stellar 7.6mmol/l. Brilliant BFF nurse #1 says ‘Well, obviously your protocol is working. Are you happy to check again when the doctor comes in and let him/her know how things are going?’
Emergency doctor comes in after a mere 25 minutes (seriously VIP) and starts asking me what’s going on. I repeat the story, report that I’ve just checked my BGL again and I’m down to 6.9mmol/l and he starts by asking the usual questions about diabetes starting with ‘How’s your diabetes’. I never know how to answer that question. ‘Um, good thanks. How’s your father?’
The next thing he says is ‘We are going to need to disconnect your pump’ to which I respond, ‘That’s not going to happen’. He looks surprised and repeats a little louder what he said. This time I answer with ‘Not an option. Come up with another idea’. Now, I know that I am a nightmare patient. I know that at this point in time the doctor was wishing that I was actually unconscious. But I also knew that my pump was working (see: BGL dropping at sensible rate for proof). I also know that I was polite. Assertive; but polite.
It was then I summoned the immortal words of one of the presenters from a Type 1 in the City event and said ‘I would like to see the endocrinology registrar. Now. Please.’ Trump card! It’s kind of like lawyer-ing up!
The endocrinology registrar has much more of an idea until this question came out ‘What’s your blood sugar usually?’ Huh? Usually when? At what time? When I’ve done what? When I’m feeling how?
How is that a question? There is no answer. My blood sugar is usually variable. That’s called diabetes.
What happened next was me refusing to disconnect my pump (again) followed by a demand (from me) that the registrar contact my endocrinologist, which she really didn’t want to do. I held my ground and promised that I would disconnect my pump if recommended by my endo.
Five minutes later, the registrar returned to my room, muttered that the pump could stay connected and then she left. I didn’t see her again. I fell back against the pillow, exhausted, emotional and, despite getting my own way, I felt defeated.
I am sometimes accused of making diabetes look easy. It’s not. And when something like this happens, it reminds me just how difficult it is. The outcome of my visit was rehydration, blood tests to check all sorts of levels, monitoring of ketones (which were gone in about three hours) and then I was sent home. Mind you – I did tell the endocrine registrar (much to her astonishment) that I was leaving at 6.30pm, so she only had until then to get me sorted. (The reason for this was that I had to emcee a diabetes information session at the hospital’s conference centre.)
So, apart from five hours in A&E, not too much of an inconvenience.
But the aftermath hit me like a lead balloon. Firstly, I rather arrogantly was upset that I had found myself in that position. Gastro leading to ketones and dehydration is not the most unusual thing in the world, so I’m not sure why I should think I’m above it all. I’m not.
The second thing that upset me is this, (and again, I hope this doesn’t make me sound arrogant). If I have to battle so much at a relatively easy visit to A&E – if I have to pull every trick to ensure that I get what I want the way I want it, how do people who don’t have the same understanding of the system manage? The people who don’t know the tricks. Surely being heard is a basic right in circumstances like these.
I need someone to explain to me how it is possible that it’s OK that every minute of every day I am the one who makes all my own diabetes decisions and yet the minute I walk through the doors of a hospital I am not equipped to do so.
Do you have any experiences in A&E that leave you feeling a little cold? How have you dealt with them?
It’s National Diabetes Week here in Australia. It’s an important week for diabetes awareness, and any time diabetes is front and centre in the media’s mind, I’m happy. The campaign this year is calling for the federal government to fund a national type 2 diabetes prevention campaign. This is incredibly important – in around 60 per cent of cases, type 2 diabetes CAN be prevented and targeted campaigns which address those at high risk will make a difference.
And yet, I do struggle with this week. As a person who is living with diabetes, the ship has sailed for me – as it has for the 1 million plus people registered on the NDSS. And for people with type 1 diabetes, there is no chance of prevention. There is nothing that we could have done to stop our pancreases taking a very, very long smoko and basically walking off the job for good.
The frustration felt by people with type 1 diabetes is clear – and I am actually quite proud to be part of the movement that is so loud and proud about not only our condition but also, why we have it. We will and do snap at people who say the wrong things about type 1 diabetes and we strive to make sure that our condition is correctly and accurately reported.
There should be no shame or guilt associated with diabetes. Full stop. It doesn’t matter what type of diabetes we have, the most important thing to remember is that we are living with a chronic health condition that impacts on our lives. Sometimes more significantly than at other times. And if it can be prevented – as is often the case with type 2 diabetes, we should be doing all we can to support initiatives to do just that. The ‘diabetes wars’ of ‘mine is worse than yours’ helps no one. The finger pointing from within the broader diabetes community doesn’t do anyone any good.
So, this week I do call on you to participate in the type 2 prevention campaign. Go to the website and ‘vote’. Have a read of the materials and understand what it is that it’s trying to do.
And at the same time, make sure that people remember those of us who are already living with this condition. Remind them that we too need support and education. We need funding for research and we need programs that help us live well with diabetes.
Follow #NDW12 on Twitter to keep up to date with what’s going on during National Diabetes Week.
I have an aversion to exercise. I know that this aversion is not healthy. I know all about how being physically active is an important part of diabetes management. I. Know.
But for me, it’s more ‘just don’t do it’ rather than ‘just do it’.
I do walk a little. But usually it’s accidental. I have no idea about exercise fads – I loved the idea of boot camp until I realised that it wasn’t about actual boots.
Anyway. Each year, the diabetes organisation where I work participates in Run Melbourne – a fun run (now there are two words that don’t belong in the same sentence) that raises money for charities.
Last year, I took part in the 5 km walk. Apparently, this was considered newsworthy enough to make my local paper.
I’d like to say that participating in last year’s event started me on a path to regular and meaningful exercise, but I’d be lying. Instead, the new blue runners I bought for the event have sat in the back of my cupboard waiting for their second wearing.
That day has come! I will be walking again on 15 July.
The reason? Because I’m raising much needed funds for camps for kids with diabetes. You can read about the camps here. Lucky for me, I get to see and hear first-hand what the kids get out of going to camp. They have a great time, meet others who are experiencing similar things thanks to diabetes and offer peer support that extends well beyond the few days at camp. The kids’ parents report that their children return with more confidence about managing diabetes.
If you could spare a few dollars to donate to this program, that would be terrific. In Victoria, we offer places for about 250 kids to attend camp each year. But at least that number again are turned away. We would love to be running more camps and offering more children and teens the opportunity to experience ‘independence through adventure’.
You can make a donation here. Thank you! And the kids who get to go to camp will thank you, too!
Here I am at the starting line of last year’s Run Melbourne. That’s terror you can see in my face.
I was trying to think of something to write about and was getting a big, blank nothing. Not. A. Thing.
So, I do what all clever writers do when we get the good ol’ block. I turned to Twitter. Currently trending is the following hashtag: #100thingsaboutme
Now, I’m not committed enough to write 100 things about me. Hell, I don’t even think there are 100 things about me that I’d want to share! But here are a few things:
- I have watched the West Wing series about 5 times. I love it. It’s my favourite drama of all time. The acting, the humour, the rapid-fire dialogue. Love. It.
- Collecting collective nouns is one of my favourite nerd behaviours (of which I have many). Some of my favourites includean exaltation of larks, a rhumba of rattlesnakes and a prickle of porcupines. But the most beautiful and my overall favourite – a blessing of unicorns (very apt for the DOC).
- I am terrified of birds. Seriously. This has arisen from more incidents than I care to share where birds have flown directly at me, terrifying me, drawing blood and making me scream like a baby. In public. They are evil, evil creatures and I believe that there is a conspiracy in the avian world to hurt me. And hurt me good.
- Despite the last sentence, I am a total and complete word-nerd. Today, I’ve used the words cacophony, whimsical, serendipitous and exaltation in casual conversation. And I swoon when people like Stephen Fry speak because the way they use words is beautiful, clever, structured and sexy.
- Coffee. I love it.
- On my iPod right now – Keith Jarrett, the Koln Concert.
- I’m reading Finn Family Moomintroll to my daughter, which makes me feel warm and safe. I remember the first time my mum read it to me.
- Ideal Saturday night in – good book, good wine, good food. I’m old and boring in real life.
- I want to move to New York City for a couple of years.
- I believe that most people are good and honest. I need to believe that to feel that the world will be OK.
- When I was in year 12, I missed most of my religion classes because I was either sitting in the laundrette near school pretending I was a Beat poet or at a nearby park playing on the swings with my best friend.
- I’m starting to feel old. I’m 38 and as I get older I feel less and less connected with younger people. I have no idea what 20 year olds like or want anymore. I don’t think they understand me either.
- Family is more important to me each and every day. And that family includes my wonderful close friends as well as my real family.
- My sister is one of the smartest, funniest, most beautiful people I’ve ever known. I hope she knows that I feel that way, but I don’t think she does.
- I have diabetes. It’s not the most important thing about me. It’s only one of the #100thingsaboutme you should know.
What do you want people to know about you? And where does diabetes feature in that list? Does it feature at all?
I live in Melbourne, so I’ve been led to believe that the Holy Grail has something to do with winning this:
However, my limited interest in Aussie Rules football (althoughthis may change by September if the Blues start winning, when I’ll suddenly become a die-hard fan) means that for me, the Holy Grail looks more like this:
or this:
Whatever!
When it comes to living with type 1 diabetes, what is the Holy Grail? Many would say it’s a cure. The day when we no longer need to medicate, consider the impact of food on our blood sugar, worry about complications and our future. That could be it.
For me, a cure is actually not my Holy Grail. And I say that because in all honesty, I don’t think that in my lifetime there will be cure for this condition. You may call me negative or a pessimist. I call myself a realist.
Someone asked me the other day if I had to choose, where I would want my research money going. The choices? Dedicated cure-focussed research or management-focussed research. Each and every time I would say the latter. I want lots of money and support directed to the people who are working at making the lives of those of us already living with this condition a little easier!
Think about it. If this sort of research hadn’t been done in the past there wouldn’t be insulin pumps or long-acting insulins or super-fast, super-small BGL meters. We wouldn’t have drugs that can prevent, reverse or halt the progression of complications. CGMS would not exist and no one would be talking about the need for psychosocial interventions when it comes to living with the chronic condition we call diabetes. (Actually, more needs to be done on that last one, but at least we’re talking about it now. Shout out to the Australian Centre for Behavioural Research in Diabetes team.)
Lucky, it’s not an ‘either/or’ situation. There is research into both finding a cure and improving the lives of us living with the condition. And there’s also work being done looking at preventing type 1 diabetes, too. But for me, I get excited when new technologies are announced – and even more excited when they are available for use. (Counting down the days until I get my hands on an iBGStar!)
I wonder if this is a preservation tactic on my part. Like many, I was assured at diagnosis that a cure was a mere ’five years away’. Well, it’s been over 14 years. Those five years have lapsed almost three times now. I have friends who have had diabetes for over 25 years and they too were promised a cure. And I know this is the rhetoric continuing to be sprouted. The hope this instils in people worries me. I see parents with a newly diagnosed infant who desperately, urgently hold on to that number, counting down the five years. Waiting for that cure. But it isn’t here. And when we look at what’s being done, a cure – an end to diabetes – is not ‘just around the corner’.
But rather than defeat me, it does give me hope. Because I know how much is being done. And I regularly see new advancements that actually help people who are living with diabetes here and now. Those advancements could be a new drug that reduces the risk of retinopathy, it could be a CGM that accurately and without fail can warn you that you are 10 minutes away from a hypo, so TREAT NOW! It could be each step we get closer to the closed loop.
There’s a lot going on. Put all your eggs into the cure basket and I think that you may be disappointed. Do we deserve a cure? Of course we bloody do! But I’m really, really glad that as clever people are working towards that particular goal, there are a lot of others working towards improved management.
Holy grail? Here’s a bit of Hunters and Collectors for you! I dare you not to dance along!
Diabetogenic 