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At last year’s World Diabetes Congress (WDC), it was terrific to see a significant number of ‘consumers’ attending. For the first time in Australia, people with diabetes were directly encouraged to attend a scientific conference.
However, there was much disappointment that people living with diabetes who had registered to attend were unable to access the Exhibition Hall.
Expo Halls at conferences are an endless source of interest and excitement. I am usually registered as a speaker so I have full access to conference Expo Halls and it is during my wanderings that I find out about the latest and greatest in technology and treatment therapies. I get to speak with reps from the companies and ask questions that are usually not addressed in the glossy brochures, and, most importantly, I get to pick up and handle new devices to see how they feel in my hands, fit in my handbag (always returned!) or sit in my bra (it’s where I wear my pump; not trying to steal anything!).
The frustration at WDC was that as well as hosting the displays for pharma companies, the Expo Hall also accommodated device companies. Consumers couldn’t get in there to see the latest meters or pumps.
And here is the problem. In Australia, we have the Therapeutic Goods Act 1989 (the Act) which states that advertising of prescription-only medications to consumers is prohibited. However, it is okay for devices to be promoted directly to patients.
The Act is out-dated and it’s time that we revisit the current ban on promotion of drugs to people with health conditions. Why, as a person living with diabetes, can I not speak with the pharma company releasing a new insulin? Why can I not ask their reps about side effects and drug profiles and why the new medication is better or how it is different to what is already on the market?
The truth of the matter is I can find this information anywhere I want. A quick visit to Professor Google will provide me with the answers to any questions; patient blogs will explain the consumer perspective and an image search will even show me the packaging of the medication. When the Act was written, it was 1989 and the internet was not in the palm of everybody’s hand.
But today? Today such restrictions are ridiculous and only promote the idea that the people actually living with whatever health condition the medication has been designed to treat are too stupid/too ignorant/can’t be trusted with this hallowed information.
The ridiculous thing is that even if I can see and read about and ask questions to do with drugs and new therapies, I can’t simply go and buy them. I can’t rock up to Mae, my gorgeous pharmacist, and ask her for the large pack of whatever new drug I’ve just read about.
There is still the ‘middle (wo)man’, the doctor. But what is so terrible about me going to see my doctor and asking about a certain therapy? How is saying ‘I’ve read about this newly listed medication and I was wondering if it is something that would work for me?’ going to do anything other than empower me and encourage a balanced and consultative relationship with my HCP?
The current system reinforces all the things that patient advocates are trying to break down: out-dated ideas that the keepers of knowledge must only be healthcare professionals and that patients will be told what to do. And then do it. It forgets who is actually driving the bus that is my healthcare. Me!
Additionally, the Act as it stands now only serves to hold back real consumer involvement and engagement at scientific conferences. I don’t subscribe to the archaic ‘conferences aren’t a place for patients’ attitude held by many out-dated HCPs. We should be looking to events such as Doctors 2.0 and You for how to bring together patients and HCPs. We should be looking to the ADA conference which has a significant number of consumers in attendance – all of whom are freely permitted to wander the Expo Hall. We should be moving away from the ‘us and them’ approach so entrenched in Australia.
A montage by photographer and Marios waiter Massimo di Sora.
Today, my all-time favourite café turns 28 years old. Marios café (named for its two owners, Mario Maccarone and Mario De Pasquale, hence no apostrophe) is celebrating its birthday and remains the ultimate in Melbourne café culture. It’s unapologetic (still doesn’t serve skim milk, although did succumb a couple of years ago and started to offer soy) and reliable (never had a bad coffee!).
I’ve been going to Marios for pretty much all of its 28 years – first with my parents and then with friends. Once I left school, meeting up with people at Marios was the epitome of cool! Great jazz on the stereo, a gorgeous changing art display showcasing local talent, and the best coffee in Melbourne. Plus tablecloths on the tables, smartly dressed waiters and breakfast served all day. There have been many times that I’ve ordered scrambled eggs or a blueberry bagel at 10pm!
Back in my uni days, it was the location for many first dates and I could always tell if there would be a second date by whether or not the guy knew of Marios when I suggested we meet there. In any relationship break up in the division of cafes and pubs and places we’d hung out, I always got Marios!
Marios is where I take overseas friends when I want them to have a truly Melbourne café experience. DOC friends from home and abroad have been taken there and just a couple months ago, a group of us got together to catch up. It’s where I meet up with friends who have moved overseas when they come home for a visit. My beautiful friend Shannon who moved from Melbourne to Hong Kong and then the UK over 15 years ago and I have a standing date any time she’s in town so she can get a fix of Marios lasagne! Recently, I caught up with a long-lost friend and there was no doubt about where we would meet.
There have been many memorable visits to Marios including the night before my daughter was born, where I checked my watch every ten minutes, counting down until the time I would meet her, and the day she came home from hospital, where a pit stop was made to show her off to the waiters.
I’ve laughed, cried, and had some of the most serious conversations of my life in Marios. I’ve said goodbye to friends and welcomed them back into my life. I’ve met up with people for difficult, heartbreaking chats because it’s always felt safe.
I can still remember my first trip to Marios after I was diagnosed with diabetes. It was only a week or two later and it was the first time I was eating out. It was where I did my first ‘public injection’ and I can remember my heart racing as I pulled my insulin pen out of my bag and tried to jab my stomach secretly. I was sure everyone was watching me, judging me, waiting to jump on me and tell me to put it away. No one noticed and if they did, said nothing. I searched the menu for food that the ridiculously old-school dietitian I had seen would approve of and I wondered if it would be okay for me have chocolate sprinkled on top of my cappuccino. I fought back tears as I asked the waiter for sugar substitute and then explained why I was asking. My coffee was on the house that day.
Now, I don’t hide away my BGL checks or pulling my pump out from under my clothes when I am out, and it was at Marios that I realised that I had nothing to be ashamed about when it came to ‘public displays of diabetes’. Marios normalised eating out with diabetes – the new reality of my life.
I felt safe there. I knew I would not be questioned. I knew that I would still be the old me there and Marios would never change. It felt like it always did. It felt like home.
Marios Cafe
303 Brunswick Street Fitzroy VIC
(03) 9417 3343
http://www.marioscafe.com.au
Cherise
I was diagnosed with Latent Autoimmune Diabetes in Adults in June 2004.
I’ve learned….
- I cannot blame myself for the inconsistency of diabetes.
- Breath. Pray. Relax.
- Leave diabetes at the altar.
Cherise is the founder of Diabetes Community Advocacy Foundation. Each Wednesday at 9pm (US EST) she can be found hosting the DSMA tweetchat. Follow Cherise on Twitter here.
Want to feature on Diabetes Tales? If you’re interested in taking part, let me know!
I stood in the bathroom this morning as I got out of the shower and stared at myself in the mirror. I don’t like what I see. There is a pump infusion set, probably almost ready for a change due to the slightly turned up edge of the tape holding it in place; a new-ish sensor makes me feel like a cyborg and tiny red and black dots covering my middle.
There are so few days when I get to step in and out of the shower truly unencumbered by some sort of diabetes device being stuck to me. All my planets have to be aligned for a day where I am changing my CGM sensor and pump line at the same time and I get to rip them out before stepping into the shower, spending the time actually aware that there is nothing attached to me. Truly nothing. Ridiculously, it’s the only time I feel truly naked.
Diabetes has left its mark all over me. Fully clothed, I can hide it, but undressed, there is no getting away from what it has done. There are scars all over my abdomen and hips from old infusion sets and Dexcom sensors. There’s a nasty red and black bruise from a failed infusion set change three days ago which resulted in blood spurting everywhere. No matter how much I scrub away the residue from tape, there is usually still some clinging desperately to my skin. My fingers have tiny marks all over them from where I jab in a lancet several times a day.
On days where my BGLs have been higher than I’d like, my skin looks slightly dehydrated. On nights where I have been awakened by hypos there are dark circles under my eyes.
There are scars and marks and bruises there to remind me of how invasive diabetes is in a literal as well as figurative sense.
The only scar I look at with any fondness is the caesarean scar across my lower belly. I trace the line and am taken back to the operating theatre the day my baby was delivered from me. Some scars form the basis of beautiful memories.
While the diabetes scars are many they do disappear. They heal. They vanish. Only to be replaced by more. Many more.
Last week, I attended a workshop given by Rosie Walker who is a UK-based diabetes and education specialist. You can read more about Rosie and her independent company Successful Diabetes here. The focus of the session was diabetes consultations and I was eager to go along as the ‘consultee’ as opposed to the consultant (most of the other participants).
One of the topics was how consulting rooms can be more ‘patient-friendly’. After this discussion, I asked if we could, for a moment, steer the conversation to waiting rooms.
I see my endo in private rooms and there is nothing particularly offensive about the room I wait in until she calls me in. It’s quiet, there are plenty of chairs and some out of date magazines on the table. I’m always pleased that there are travel mags, so I can do a little armchair travel as I while away the time.
My GP’s waiting room is a little more bustling. It’s larger, the phone doesn’t stop ringing and, because it is a very busy practise, people come and go constantly. There are signs on the walls asking people to not use their mobile phones while waiting to see the doctor in an endeavour to keep some of the noise down. The magazines are about health and wellbeing or home renovation. And golf. Someone in the clinic is a golfer and recycles their mags in the waiting room. Again, pretty innocuous and not an unpleasant way to spend some (often considerable) time waiting for my name to be called.
But I have seen some slightly terrifying things in waiting rooms that have made me want to turn around and walk out. Once, in a presentation I was giving in the waiting room of a diabetes clinic, I did actually draw attention to the horrendous poster which depicted graphic images of amputated toes.
I am not sure who thinks that it is a good idea to put up scary photos of ‘what will happen if you defy me’ in waiting rooms. Is there any logic in showing photos of amputated limbs, eyes with diabetic retinopathy or terrifying slogans of ‘diabetes is deadly serious’? Does this make people skip into see their doctor eagerly, or fear they may be threatened? At its worst, it’s akin to bullying. At best, it’s thoughtless and unnecessary.
Often, people sitting in waiting rooms are already anxious and scared about what is waiting for them. Will there be results from tests that could be bad news? Will the HCP be cross because diabetes hasn’t really been a priority lately? I know that I am often apprehensive about what is waiting for me behind the doctor’s doors and I don’t do HCPs who do judgement.
Waiting rooms need to be a safe haven, free of judgement, nastiness and fear. They need to calm us down and make us feel that we can be open and honest once we get to see the doctor.
For me, my dream waiting room would look like this:
Lots of natural light so I can see outside; not too much noise, but equally not so silent that I’m afraid to speak; details about relevant information events coming up; a barista in the corner making the perfect coffee (I said DREAM waiting room); comfortable chairs; free wi-fi; no TV blaring health messages (although, one of my HCPs does have Bold and the Beautiful on loop, so I get to catch up on that when I’m in their waiting room once every 12 months); gorgeous prints on the walls (absolutely no scary photos); a pin board with research news.
In lieu of perfection, however, I’d just be happy with a comfortable chair, some architecture and house porn and a water station. And a lovely, non-judgemental HCP on the other side of the door.
What do the waiting rooms you’ve spent time in look like? What would you like to see?
At this time of year, lots of chocolate may come into your life. This is to be celebrated – diabetes or no diabetes.
I don’t hand out advice, but I do share things I’ve learnt. And I’d like to share this: sugarfree chocolate is the work of the devil. It does weird things to your insides, leaves an odd metallic coating in your mouth, will make you spend a lot of time in the loo and basically tastes like crap a little unsavoury.
Eating the real thing is far better and definitely bolus-worthy. My favourite chocolate to eat at Easter is in the form of a dark chocolate Lindt Gold Bunny. I’m also partial to anything from Haigh’s chocolate.
I read the other day that if you crack open your eggs (Bunny) before eating, all the calories fall out.* So smash the bejeezus out of your chocolate before eating it, make it dark chocolate and I think that you’ve pretty much got a health food in front of you.**
Also, there is to be no guilt associated with eating any said chocolate.
Enjoy the next couple of days and I’ll see you next week with a belly full of real chocolate!
*Not proven by science.
**I’m not a dietitian and this bit could be made up.
REBECCA
Being a single mum is a lot like living with Diabetes – yes it can be tough, but also very rewarding – especially when you are in control!
Being both has certainly proven to be challenging – but if anything – 28 years of T1D has been a great training ground in showing me what I am capable of, and giving me the resilience I have needed lately. I know what I am capable of – and I know I can conquer this too.
You can follow Rebecca on Twitter here.
Diabetes Tales is a new thing I’m trying out at Diabetogenic. If you’re interested in taking part, let me know!
On April 15, 1998, I was inducted into the world of diabetes. I had no idea what lay ahead of me and it was a year where I really didn’t have time to be diagnosed with a chronic health condition. At the time, I was 24 years old, in the middle of wedding-planning, trying to buy a house, changing careers and moving. Diabetes wasn’t part of the plan. It still isn’t, come to think of it, but I don’t really have a say in the matter now.
Today, I’m reposting a letter I wrote to my 24 year old self about what I could expect. I’ve made a few little changes (you can read the original post here) , and the reworked one below:
Dear 24-and-a-half-year-old-me
Oh, sweetie. Diabetes sucks. You don’t know that yet, but let’s clear that up from the beginning. It sucks. It’s not fun and it is a pain in parts of you that you didn’t even know could hurt. But figuratively more than literally.
Right now, you are overwhelmed, stressed, anxious, scared and terrified. In a couple of weeks you’re going to get angry. Really angry! It’s OK to be feeling all these things.
You will be fluent in a new language within the next few weeks. Words that you’d never heard of become part of your vernacular, and you become incredibly conversant in anagrams. BGL, CSII, HbA1c, DA-Vic, CGM, ADEA…. And you will delight in the fun way mmol/l rolls of your tongue. (I promise – that will make sense!)
Believe it or not, you are going to be absolutely fine about sticking a needle into your skin four times a day. And you’ll find that actually, it doesn’t hurt. You won’t be quite as comfortable about the jabbing your fingers what feels like a million times a week to find out what your blood sugar is doing.
But things get better. The lancet device you have now is pretty horrendous and in a couple of years, you’ll get a new one that doesn’t make quite as nasty a clunking sound, and will hurt less. Also, the first meter you have will take 20 seconds to count down to tell you your BGL. Wait until you get one that takes five seconds! You won’t know what to do with all that extra time in your day! And one day you’ll get a meter that plugs into your iPhone. (And one day, you’ll know what an iPhone is!)
Find out everything you can about insulin pumps. Speak with people using one. In three years you will have one and it will change your life. I want you to hold on to that over the next couple of years when things are not going as you’d like with your diabetes management and you think that you’ll never work it out. You do. And your pump is a huge help. Technology that you have no idea about is going to become an integral part of your life. Don’t be afraid of it – embrace it. But remember that these tools are there to help YOU manage your condition. Don’t become a slave to the data and don’t feel that you can’t take a break and go back to basics if that’s what you need.
(Also, perhaps tone down the evangelical pump attitude you develop. You become a little zealot-like. Yes, it worked for you, but it may not be for everyone. BUT INSULIN PUMPS ROCK!!!! As for CGM – let’s just say that your mind will be blown!)
Can we just talk about guilt for a minute? Diabetes comes with a lot of it and you’re going to learn that really quickly. Here are some things that you absolutely should not feel guilty about:
- The fact that you don’t change your lancet EVERY time you check your BGL
- Ditto goes for pen needles, and after three years, pump changes
- What you eat. Food does not have a moral compass.
- When you feel overwhelmed and completely ‘over’ having diabetes
- Not wanting to be a diabetes advocate ALL THE TIME
- Accepting that saying ‘that’ll do‘ when it comes to your diabetes doesn’t make you a bad person; in fact, it makes the whole diabetes palaver more manageable!
As you are in the middle of your wedding plans, here are some things I want you to know about that day so you can relax a little. It is a fantastic day. Your dress is stunning, your hair looks fine and you find the shoes you have been searching for. Diabetes comes along for the ride, but it’s in the background and no one mentions it on the day except for your mum asking quietly if your BGL is OK. When you think back to your wedding day, look at the photos and watch the video, you won’t be thinking about diabetes. You’ll remember the song that was played as you walked down the aisle and the faces in front of you. You’ll remember dancing the tango at the reception and the band playing Stevie Wonder as ‘gli sposi; were introduced to their friends and family.
(Also, the cars will be running late, but they’ll get there; and deliver you to the church inside Aaron’s ‘you’ve-got-fifteen-minutes-or-I’m-heading-to-the-pub’ timeframe.)
Oh, and when you meet your endocrinologist for the first time, he is going to tell you that diabetes will not stop you from having babies, as long as you have finished having your family by the time you are thirty. And you are going to wonder how it will be possible for you in the next five and a half years to fit in all the things you planned AS WELL as have a couple of kids. Don’t stress. Soon, you will find an endocrinologist who sets you straight. And when you are three days shy of thirty-one you will have a daughter. She’s a delight.
He will also show you some scary pictures of amputated limbs, kidney failure and tell you that you may go blind. Please, please, please don’t be shocked by what he says. The scare tactics that are used on you by him and other diabetes health professionals you will meet in the next couple of years will actually make you angry and determined. This is a good thing. As you seek out information, you will learn that complications are not inevitable and you will do everything possible to minimise your risk. And you will also come to understand that the guilt associated with complications is not fair.
You are going to meet some incredible people in the next few years – some of them become some of your best friends. Having a support network of people living with diabetes will inspire you, help you. Seek them out! And you have no idea what this means, but when, in 2011, you decide to get on Twitter, embrace it like there’s no tomorrow. Your mind will be opened up to a world of amazing, inspiring, caring, funny people all over the world who, like you, live and love with diabetes. You will call these people your friends and you will be part of a global community that makes you feel accepted and safe.
So 24-and-a-half-year-old me. The future isn’t as grim as you think it is right now. Your life isn’t life with diabetes. Diabetes isn’t the central part of it and I know that right now you wonder how it can be anything other than that. But it’s not. There will be times where you feel that it is all consuming and taking over everything, but by and large you manage to keep it in its place. You will get to forty and be healthy and surrounded by the people who love and support you and while you will have encountered some of the most difficult times, you will also have encountered some of the most wonderful. Diabetes is only part of your life.
Also, go and eat a cupcake today – just because you want to. It’s what I am going to do right now!
Much love from your much wiser, 40 year old self.
We have two dogs and one cat. They are fluffy, cute and very much part of our family. And while I like to think that they are wonder animals, they’re really not. Bella, the Maltese/poodle cross used to sleep under the coffee table and every time she woke up, hit her head. She did this for three years. Until we got rid of the coffee table. Jasper, who is getting old now, has only one thing on his mind – food. He’ll eat anything, including the green leaves at the top of a strawberry and the watermelon rind. Cherry the cat is, as most cats, quite brilliant, and manages her staff (the three humans of the house) in typical cat aloofness with a side of purring cuddles thrown in so we remember how much we love her.
Gorgeous? Yes. Smart? Not so much.
For years of I’ve heard stories of dogs and cats that can sense if their owners’ BGL is dropping. Clever hypo alert dogs are being used by people with impaired hypo awareness to notify them of undetected lows. I’d read these stories. And then think of our little pets whose skills don’t go much beyond sleeping, eating and looking cute. I was resigned to the fact that none of our pets would save me in a sticky situation. Except, I think that the other night, Jasper may have done just that.
Until recently, Jasper slept at the end of the bed. A new, higher mattress and his old age have meant that jumping up was becoming harder and harder. Instead of effortlessly leaping up, he would run from side to side of the bed, front paws on the mattress, his boofy head popping up, looking a little like a meerkat as he waited for one of the humans to lift him up. After getting sick and tired of this routine, we bought him a bed and he now sleeps in a corner of the room.
The other night, I put myself to bed early and promptly fell asleep. After about an hour, I stirred because Jasper was doing his meerkat impersonation, but only on my side of the bed. Suddenly I felt him gently tapping at me. I told him to leave me alone and go back to his bed. But he refused. Dozing in and out of sleep, I could feel his paw on my arm and then he stared whining.
Finally, wide awake and annoyed at being woken, I started to get out of bed, thinking he needed to be let out or wanted his water bowl filled. As soon as I stood up, it hit me. I was low. Really low. I slumped back on the bed and grabbed the lolly jar from the bedside table and threw down a handful of jelly snakes. Jasper sat down at my feet, watching me earnestly. As I started to feel a little less woozy and could sense my BGLs coming up, Jasper padded back over to his bed, got himself comfortable and fell back asleep.
I ate a couple more jelly snakes and checked my BGL. It was back in range. I could hear him snoring gently in his corner and ten minutes later, as I started falling back asleep, I thought that maybe he is a wonderdog after all.
Jasper the Wonderdog
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