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Clearly, jet lag, daylight saving and time zone confusions have meant that any creativity left in my pea-sized brain has been zapped to non-existence. As has the ability to order the million things that I have read in the last couple of days.
So, with a slight inability to organise my thoughts clearly, here are some things on my mind today.
Stephanie Rice is not a medical professional (that piece of information is more for her than anyone else)
Yes, another C grade celebrity has been at it again: providing medical advice and pretending to be an expert of everything. Aussie Olympic swimmer, Stephanie Rice, has come under fire for starting a Q&A style section on her Facebook page, where readers could seek medical advice.
Now, part of me wants to say that if you think that asking an Olympic swimmer for anything other than advice about, I don’t know, swimming, you get what you get and you don’t get upset. But this isn’t really about Rice’s readers. This is about the arrogance that she is demonstrating in thinking that she actually has anything to offer here.
I was talking about this yesterday with someone and she looked a little surprised at how annoyed I sounded. ‘But isn’t that kind of what you do on your blog,’ I she asked.
I would like credit here for the incredible restraint I demonstrated in not stabbing her with a (blunt) lancet. I would also like credit for speaking to her with respect as I pointed out that no, this is no what I do here.
What I do here is talk about my experiences (such as my experience of getting annoyed at swimmers who think that you shouldn’t have a medically-prescribed MRI because ‘there is so much radiation’), but never, ever telling people what they should do (such as suggesting that you shouldn’t have a medically-prescribed MRO because ‘there is so much radiation).
Of course, Rice responded with an ‘I’m hurt – I’m only trying to share what I have learnt and how much I now know’ post that is defensive and naïve.
Also, it is where she has it wrong. And it’s where Sarah Wilson and her ‘I-live-with-autoimmune-disease-(as if it is a singular thing)-and-therefore-can-give-medical-advice’ also gets it wrong.
Your advice is worthless. You have no qualifications in medicine, so stop giving medical counsel.
What does have some worth, however, is sharing your story. People connect with that. They hear what you are going through and feel supported. It makes them feel less alone. It is not your job – any more than it is my job – to provide medical information to people.
So stop it. Just stop it.
Live longer
Yesterday, MJA (The Medical Journal of Australia) published an article – Recent advances in type 1 diabetes – authored by some of Australia’s leading clinical experts in type 1 diabetes.
There were some really interesting points mentioned including that, in Australia, the incidence of type 1 diabetes has doubled over the past 20 years.
But for me, the most interesting and hopeful point (which was also the focus of the media release) was the following statement:
Although T1D is still associated with considerable premature mortality, recent findings show that a significant improvement in life expectancy has occurred.
I have always had in the back of my head that my life expectancy will be shortened by fifteen years due to my diagnosis of type 1 diabetes. It’s not all roses and I am not in denial that there will be challenges as my diabetes – and I – get older. But there is some good news in here. And for that, I do have some hope.
Do this survey
Abbott Australia has a series of surveys live at the moment for adults with type 1 and insulin-using type 2 diabetes.
YourSAY (Self-management And You) asks what it is like to live with diabetes each day, specifically looking at the behaviours and attitudes to diabetes self-management and glucose monitoring.
The survey takes about twenty minutes to complete and is open to anyone who meets the following criteria:
- Live in Australia
- Be aged 18-70 years.
- Have been diagnosed with type 1 or type 2 diabetes
- Be currently using insulin injections or an insulin pump
- Not currently be using a continuous glucose monitor (CGM)
Sound like you? Then hop to it by clicking here.
New look
Go check out The Parents’ Voice. Here, you’ll find the new name and new look of The Parents’ Jury. And while you’re there, considering signing up and becoming a member. The Parents’ Voice is all about improving the food and activity environments of Australian children.
#DOCtober
Grab your phone – or, if you’re old school, a camera – and join this month’s #DOCtober photo challenge. Kerri Sparling is documenting the month in photos on Instagram and on her blog and is asking you to join in. The idea is to find something diabetes-related and post it in social media land for all to see.
I’ve been pretty lax…as in have not posted a single thing…but here is my contribution for today. This is my desk at work with all the found objects from EASD.
Things I’m missing about Scandinavia
Cinnamon buns. Recipe found; baking planned. As soon as the weather cools down and I can consider turning on the oven!
Tick tock
As I’ve mentioned before, I often use the stat that we spend approximately six hours a year with HCPs working on managing our diabetes. It works out to about 0.07% of the year.
On his blog, Manny Hernadez has broken it down and wrote this great piece. He reckons that it is even less, with his calculations coming in at 0.007% of the year.
Whichever what you look at it, it’s not much time at all! And, it serves as a reminder of just how much little time we have professional assistance when dealing with diabetes.
So, remind me again who the expert is?
That’s cruel
I wore a green dress yesterday.
One of my (very frequent) criticisms of diabetes conferences – especially here in Australia – is that there is not enough input from people with diabetes. The very people who are the reason that these conferences exist are largely silent and very, very invisible.
This year, however, I am so pleased to say that even though there may not be many of us storming the halls of the Adelaide Convention Centre, the voices of people with diabetes are being heard very, very loudly.
The day kicked off with a breakfast celebrating the 10th anniversary of the OzDAFNE program. There, in between discussions about the program was a video showing people who had completed DAFNE sharing their thoughts about the course.
I then headed to an often-challenging session on hypoglycaemia, where Dr Christel Hendrieckx from the ACBRD, in her session about the emotional and behavioural consequences of hypoglycaemia, dedicated a slide to quotes from this Diabetogenic post about the language we use when referring to mild and severe hypos. I am not sure that I have ever been prouder. (I also completely broke the no photos rule with this, but they are my words, so I thought I would be safe!)
In the next session , diabetes educator, Virginia Hagger (also from the ACBRD), spoke about the TEAM T1 Program. Once again, interspersed between stats and explanations of the program, quotes from teens who had attended TEAM T1 were read out, highlighting how the course helped them.
Virginia spoke again later in the day, this time about the Diabetes MILES Youth report and played the video used at the launch of the report (and shared on this post) for the audience. The words used to explain how young people feel about living with diabetes are powerful and their impact is significant.
Amelia Lake from the ACBRD (you’ve noticed the common theme here, right?) spoke about the development of a resource about young people with type 2 diabetes and retinal screening. She too provided great insight into how young adults with type 2 diabetes feel about eye checks by sharing quotes of their experiences.
While it would indeed be wonderful to have people with diabetes sitting in sessions, and standing on the podium lending their voice to provide the practical side of the theory often being discussed, incorporating the words of many into talks is a powerful and effective way to hear from us. Plus it means that there is never only one voice – which can at times seem tokenistic – being heard. Instead there are many – every single one important as the next.
Being fiercely independent about my health is something that I cherish. I have a strong need to own my own health and well-being and direct the course taken to manage my diabetes as best as I possibly can. I do this with full disclosure that the mess ups are mine as much as the successes. The buck starts and stops with me.
But sometimes – always, actually – it helps to know that there is support at hand when needed.
That help might be in the form of someone to accompany me to appointments (thanks dad, who has chauffeured me to almost every single ophthalmologist appointment I have been to in the last 17 years), someone to meet me afterwards over coffee so I can debrief and share what happened, or someone to actually sit alongside me whilst in the consulting room, taking note of what is being said. Having a second set of ears is always a great idea, especially if what is being covered off is challenging in any way.
I usually attend appointments with my endo alone, although sometimes, my mum may be with me to keep my company. We use it as an excuse to then catch up for coffee and cake. Other times, when there has been something ‘big’ to discuss, Aaron comes along and listens intently, rarely commenting unless he can see that I am uncertain about something. And then we go for coffee and cake.
I pretty much always see the GP alone, but truly, my GP appointments are always super quick and about something so specific – and usually simple – that I don’t need to take someone along for the ride.
Most of the time, I am happy to be on my own. I relish the time in the waiting room – all alone, nice and quiet, and usually a trashy mag or two to catch up on.
The day I was diagnosed with diabetes, I was squeezed into an end of day appointment with an endocrinologist. I asked Aaron and my mum to come along to help me understand what was happening. The next day, as I saw the dietitian and diabetes educator and endo again, they were there, and together we took in all the new information, letting it swirl around us and settle uncomfortably. A new health reality that involved needles and numbers and thinking about food in a different way. This needed a team approach.
It was incredibly useful to be able to ask them questions about things I had only half heard or half understood as my mind tried to take in all I was being told. I found myself turning to mum for suggestions around food, and to Aaron about how I was feeling and what I was worried about.
As I got used to ‘having diabetes’ I asked fewer questions and learnt to focus on what I needed to know. These became the things that we would discuss in appointments and afterwards, blocking out the ‘white noise’ of the things we didn’t need to know.
I have people around me who know a great deal about diabetes; people I can call on when I need to for advice and company and a friendly face in the waiting room. Someone on my side; someone by my side. My own personal wingmen.
A friend I’d not seen for many years contacted me the other day. Apart from occasionally seeing her name pop up on my Facebook feed, we have had no contact for over ten years.
Out of the blue, she got in touch because she had recently had a miscarriage and was feeling pretty down. She wanted to speak with someone who had been through the experience and she had seen some of my posts about how I felt immediately after I miscarried a couple of years ago, and some follow up posts since.
As we spoke – well, I mostly listened, because I knew that was what she needed – it struck me that it is always the subjects that are taboo that are the ones we need the most support with.
In diabetes, it is still complications that seem to be a topic we are uncomfortable speaking about. We speak about them in hushed tones, as if by not giving them a name we don’t give them weight.
We are scared to ask questions, because we are afraid we will say the wrong thing. We don’t want to upset people and we don’t want to look like we are prying.
But perhaps that is what we need to do a little. We need to pry.
And we can do that in sensitive, caring ways that can and do help.
I learnt how valuable having someone gently pry could be back in 2003 when I had my first miscarriage. As I was enveloped in grief and trying to work out what to do and get through the days, a friend picked me up and took me out for a coffee. She had her new baby boy with her, which was just what I needed. A gorgeous little smiling poppet, who was happy to sit on my lap and be cuddled and have his chubby cheeks kissed.
‘Renz,’ she said. ‘Tell me what happened.’
It was the first time that someone had actually asked me that. Most people asked if I was okay, which clearly I wasn’t, but that wasn’t the answer they wanted, so I would smile through my tears and nod.
But here was someone actually asking me to tell them exactly what had happened. And I did. She listened, reached out and held my hand when the tears gently started and hugged me at the end. She didn’t offer any advice, didn’t tell me it was ‘for a reason’, (seriously – the worst response ever), or tell me that everything would be okay.
She just listened. And then she said, ‘I am really sorry’. It was just what I needed, and I nodded through that too, thanking her for giving me permission to tell my story, even if it was difficult for her to hear.
I have employed this tactic over the years – not only when I hear about pregnancy loss, but other things too. It is really hard to stay silent sometimes, because we want to reassure people, we want them to know that they will be okay and we want to take away their pain.
However, I have found that that is not what people want. Often, they are just looking for an outlet; a way to tell their story and be heard.
It doesn’t even need to be something really big for this technique to work. When I tell people that I have had a hypo, I don’t want them to look for solutions. I don’t want then to workshop what happened leading up to the low or to talk to me about what I had (or didn’t have) for lunch. I just want them to listen.
I really don’t expect them to fix things. I know for me, I just need someone to legitimise how I am feeling. And acknowledge that it is tough.
My husband has the best response when I tell him I’ve had a crappy diabetes day. ‘Diabetes sucks,’ he says to me, leaving it at that. And he’s right. It absolutely does.
This weekend, I gave a talk about finding good support to a group of people living with type 1 diabetes. I can’t remember the last time I stood up in front of PWD and just chatted about life with diabetes. Recently, all the presentations I have given have been for HCPs and the tiny few I have given to PWD have focused solely on social media and technology. It was kind of nice to go back to basics and talk about supporting each other more broadly.
So, here is my secret admission: I always feel like a fraud when I am about to give a talk. Seriously, who am I? I live with diabetes and all I can do is share my (frequently clumsy) experiences. I always prepare, but my talks rarely, if ever, end up how I planned. I wind up taking weird tangents, sharing far-too personal stories and then when the anecdote comes to end, I stand there a little shocked with nowhere left to go other than to sheepishly say, ‘Right…so where were we?…’
Anyway, I was talking about how we can work with our HCPs to get the best support – and finding support outside our HCP team. And how great families and friends can be with their support, but somehow, there is nothing like being around others with diabetes because they just ‘get it’.
There was lots of nodding and chatter and laughter in the room. It was really informal – just a (large) group of people sitting around chatting. These are my people; this is my tribe!
This was my favourite kind of talk. The audience was really engaged and wanted to share their stories. I love that for a number of reasons – one of them being that it means I have to do less work! But mostly, because I always learn something new. Because there before me is a room full of experts!
Someone came up to me afterwards and thanked me for my talk. And I thanked them. Because as much as I love sharing and talking about my diabetes, I love hearing from others even more.
How are you?
I’m fine. (I’m having a ‘diabetes day’ and I’m a little over it.)
You look tired.
Thanks. But really, I’m okay. (I am tired. I didn’t sleep because my BGL was high all night and I was up every ten minutes peeing and drinking water. Also, stop telling me I look tired!)
How is your diabetes going?
Fine. You know, up and down. Thanks for asking. (Still there. Still a pain in the arse. Still ….)
Did you have a bad night? You look like you haven’t slept much.
It wasn’t a great night. But I’m here! I’m okay. Thanks. (Enough with telling me how shit I look!)
Have you seen the doctor recently? I mean, if you are tired and not feeling great then maybe it’s time to see the doctor.
I’m okay. But thanks. (Seriously, you’re not going to acknowledge the ‘up and down’ comment? And no, I haven’t seen a doctor about the ups and downs, because if I was to do that every time I was low or high or low then high or high then low I would spend all my time in the doctor’s office and I have other far more fun things to do. Such as have this conversation.)
You know, sometimes you just need to take a break from things. Have you thought about that?
That’s a great idea. I’ll see what I can do. (I wish I could take a break from diabetes, but it doesn’t work that way. Instead, it’s about working out how to manage things the best I can.)
Or maybe stay home when you have had a not-so-great night.
Hmmm. That’s tough sometimes, but I will think about it. And I’ll just grab another coffee. (If I was to stay home after every not-so-great night, I would end up with a not-so-great work attendance record. Also, coffee. And more coffee.)
Are you sure you are okay?
Okay. The truth of the matter is that I am exhausted today. I had a lousy night and barely slept. Today, I feel like a bus has hit me, reversed and then hit me again. I would really like to curl up and catch up on the sleep I missed last night, but I had to get up to get the kidlet to school and then get to work because they expect me to show up – regardless of diabetes state – and then get home and parent a little more. But the truth of the matter is that I am tired, emotional and plain over it. Thank you for asking me. (You asked…..)
Um. Okay. Um. Let’s catch up soon.
Yes, let’s. (And let’s not talk about diabetes anymore!)
I frequently give talks about how to get the most of our healthcare professionals. One of the things I talk about is making sure that we find the HCPs that work best with us. I talk about interviewing doctors – something that I did years ago when I was looking for the right endo. It’s a two way street. One doctor told me that he didn’t think that we would work well together. He was completely right and I walked out of that appointment rather quickly!
I also talk about being really clear and upfront about things – what we need from our HCP, what we expect. And then give them the opportunity to do the same thing.
This is pretty much what I want to say to every HCP when I meet them for the first time.
Dear Doctor
Hi. You and I are on the same side. My side. We are both championing for me to be the best I can be with the cards I’ve been dealt.
I thought that we would start out by me telling you what I need from you and I would love it if you did the same. This is a relationship that works two ways. You need things from me and I need things from you. Let’s get all that out on the table from the beginning.
Mutual respect is really important. I come with mine ready to give to you. I won’t, however, be quite so generous if you don’t demonstrate the same thing.
Judgement is not welcome in our consultations. That message is actually for me as much as it is for you, because I am totally judging you. I expect you to be judgemental and not understand me or my condition. Show me that I’m wrong. And then don’t judge me for being such a pain in the arse!
My health condition is one that you know a great deal about. That is why I am coming to see you. I want to know everything thing you know that is relevant. But I need you to remember that I have a unique expertise in the field of Renza’s Diabetes. I am the world expert in this field and I will impart everything I have learnt and continue to learn about it to you. If you could then help me make sense of that, I’d really, really appreciate it.
I am not stupid. I have a really good understanding of the health system of which I am, unfortunately, a user. I also know a lot about the technical sides of my condition. I totally get that you need to make sure that I am clear about what you are saying, but please don’t dumb it down too much for me. I promise that I don’t care about looking stupid. I’ll ask if I don’t understand.
I use humour a lot to try to deal with what is, at times, a really scary thing to live with. Sometimes you may think that my humour is not particularly appropriate. A lot of the time you won’t find me funny (but for both of our sake, please pretend; I promise to ignore your fake laugh). I don’t make fun of the situation because I am making light of it. Or because I don’t care. I always care a great deal. But sometimes, it’s what I need to get me through.
I’m really not good at asking for help. But I am coming to see you because I need it. I may seem to be going the long way around getting to actually ask for what I need. Feel free to ask and prompt and even push a little.
I’ll say it again. I care a great deal about my health. I want to be healthy and well and on top of everything. There will be times – and they may be extended times – where it seems that I don’t care. The important word there is ‘seems’. I do care. Really. Sometimes though, it is just overwhelming and exhausting. But I really, really do care.
I have a beautiful family and a great job and a shoe collection that may make you jealous and really like to drink coffee. I bake a lot and love old black and white films. I have wonderful friends I spend time with – frequently over a meal somewhere. Exercise and I are not mates. I read voraciously and should probably seek some sort of therapy for my inability to stop buying books. I have a thing for bright red lipstick and have too many handbags. I love Nutella. And bacon. And doughnuts. You may wonder why I am telling you this. It’s because all of these things are part of my life. Just like diabetes. And it goes to explain why diabetes is not the most important thing in my life or the thing that I focus on all the time.
I’m terrified about my future. I am scared about diabetes complications, I lie awake at night worrying about the chance of my daughter getting diabetes and I fear becoming a burden on my loved ones. Diabetes is scary. It is not just a condition of numbers and lab results. It is (an unwelcome) part of my present and my future.
I solemnly swear that I will never, ever walk into your office asking you about some ridiculous cure I read about on the internet. Remember that bit about me not being stupid? But equally, the internet is where I get a lot of my support and information about living with diabetes. I have a support network of people living with diabetes from all around the globe. They build me up, tell me about new things, help me work through tough times. They are, to me, as important a part of my diabetes management as you are. Don’t treat them with suspicion.
So, did you know that cinnamon can cure diabetes? I’m disconnecting my pump and eating cinnamon doughnuts and nothing more for a week to see how it goes. Just kidding. (Pretend laugh. Now.)
And finally. I want you to remember all the time that I am doing the best I can at that very moment. It may not be as much as you would like, but this isn’t about you. It’s probably not as much as I would like either. Acknowledging what I am doing makes me feel really great. And frequently then makes me want to do better.
Thanks for reading. I really do hope this is the beginning of a beautiful doctor-PWD friendship.
Best
Renza
Friday tunes. Oh, Vinnie Barbarino!
I am always interested to hear from friends overseas about how they access their diabetes supplies. In some places, discussions, negotiations and, it seems, arguments with insurance companies are required before product is delivered; in other places, people with diabetes require a prescription from their HCP to purchase consumables as well as medications. And, in other places, access is so limited and sporadic there are no processes in place to guarantee supply of the things we need to manage diabetes.
In Australia, the process is actually quite simple. A diagnosis of diabetes means that a person is eligible to be registered on the National Diabetes Services Scheme (NDSS). Once registered, PWD can use the NDSS to access most diabetes (non-drug) consumables.
The supply of insulin (or other diabetes medication) here is part of the Pharmaceutical Benefits Scheme (PBS). A prescription is required from a doctor and that is taken to a pharmacy to be filled.
In my experiences, insulin is not always kept in stock, so I make sure to call ahead and have it ordered in for me. Most people with diabetes I know do the same thing – many have been caught out thinking that we could simply show up, hand over our prescription and be given the insulin (after being warned about how it needs to go into the fridge NOW – RIGHT NOW).
The NDSS is an initiative of the Australian Government. Diabetes Australia has, for the last 28 years, administered all aspects of the NDSS, which apart from product supply and delivery also includes information and support services for people registered on the Scheme.
When I need BGL strips or pump supplies or needles, I can access whichever products I choose to use by either ordering over the phone, online, or at an NDSS outlet, which could be downstairs at work (see disclaimer), at a hospital, community health centre or, most commonly, a pharmacy.
Sounds easy-peasy-lemon-squeezy, and for me, generally it is.
The NDSS rules and regulations are all set out by the Department of Health and then carried out by those actually distributing products. It’s for that reason that there are limits on the quantity of product you can purchase in one hit. Again, I’ve not had a problem with that. I had a form filled in by my endo a number of years back that stated I use above the upper limit of strips. I am therefore able to order more than the 900 strips per 180 days that is standard. (For those doing the maths at home, that is five strips per day. This is what is recommended as a guide by many HCPs. Of course, diabetes does not operate to a guide, which is why there is the flexibility to order more if required.)
I have recently noticed quite a few people online complaining that they are having difficulty accessing the quantity of product they require.
So, what do you do if you have this problem? The first thing to do is to remember where the rules and regulations come from. Of course it is frustrating to be faced with someone telling you that you are unable to have as much product as you need – especially if you are ordering within the limits, but even if you are ordering outside of that quantity. But don’t shoot the messenger. A pharmacy assistant telling you that you can only order 180 days of strips or needles is just doing their job. (It’s a completely different issue if they are telling you that they will only give you one or two boxes – that is not okay!)
You can write directly to the NDSS or even better, to the Commonwealth Minister of Health. Be clear and concise about why you need to be able to order the quantity you require.
This is also the time to remember that your local member is there to serve you.
Remember that if you are writing to an MP, they may not have the understanding of diabetes that you do, so use generic terminology – and don’t use ‘diabetese’. Keep it simple and try not to get bogged down in detail.
If you believe that you are not able to access what you need – the actual product and/or the product in the quantity you require – there is something you can do about it. That something is not bitching and moaning on social media, by the way. It’s taking action and actually doing something that will result in change.
I have written before that there are going to be some changes in the next twelve months with NDSS product supply. There is absolutely no reason to believe that the subsidised scheme is under threat, however the changes will certainly mean that the way we have accessed diabetes supplies in the past will change.
FUN BIT! Disclaimer
I work for Diabetes Victoria and Diabetes Australia. The majority of the work I do is funded from the Registrant Support Services part of the NDSS. This is a different funding stream to Product Supply and Delivery.
Despite my parents having been born in Italy, I can barely speak a word of Italian. I can order a coffee, ask for a size 38 shoe or boot, and enquire about where to locate a decent Nutella cornetto for breakfast. I also speak with my hands like a native, so I fool a lot of people into thinking that my Italian must be as good as my Italian hand-waving. Alas, it’s not.
It wasn’t until I was diagnosed with diabetes that I became bi-lingual. That’s right; I learnt how to speak diabetese.
When I am low, I become super fluent in diabetese. It is at that point that words I know to be correct in English completely disappear from my memory and are replaced with words that may or may not work. Frequently they don’t.
The other morning, I announced to the family that ‘I need fooding’. Hilarity ensued from Aaron and the kidlet while I looked on confused and annoyed at their laughter, trying to find the right word, and demanding they stop it and get me a freaking doughnut. Apparently it was so funny that it warranted a Facebook post, where someone kindly responded that I had spoken ‘like a true Calabrese’ (which actually isn’t too far off the mark when I think about some of the words that my grandparents turned from Italian to half-English. My mother still jokingly refers to the first meal of the day as ‘brekkafesta’).
On the same day, I couldn’t remember the word for a particular appliance. ‘Heat that up in the dishwasher…I mean washing machine…I mean microwave,’ I said, desperately searching for the name of the correct white good. (More laughter from the other inhabitants who reminded each other of my earlier ‘fooding‘ comment and laughing about that all over again!)
I don’t even need to be low for diabetese to fall into dialogue.
‘What was Amy Winehouse’s blood sugar level when she died?‘ I asked Aaron when we walked out of the movie the other night. ‘Huh?’ he asked, looking at me. ‘Blood alocohol?’
Of course there is the ability to have whole conversations in acronyms – ‘At the ADA conference I was at a session on IPT and CGM and a CDE pointed out that QoL is as important a measure as HbA1c.’ Makes perfect sense to me and my people.
Being able to speak a LOTE that may only be understood by a (very select, very intelligent) few is kind of special. But I would be more than happy not to have to ever, ever again.
Diabetogenic 