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I’ve been thinking a lot about motivation recently; specifically, how we remain motivated living with a lifelong health condition that places so many demands upon us. It’s something I also get asked about a lot by others with diabetes – often people newly diagnosed: ‘How do you stay so motivated.’
It’s all smoke and mirrors, because the truth of the matter is that most days, my motivation to ‘do diabetes’ is very low. In fact, I think that there is a spectrum of motivation where zero is ‘What diabetes?’ and ten is ‘I log everything…EVERYTHING…ask me how many carbs I ate yesterday and what my BGL was at 3.10pm and 5.55pm. Go on…do it. Because I can tell you. Do it. Ask me. And also, yes! I can tell you why my glucose levels spiked at 10.12am three months ago on a random Tuesday. Also, look at this: it shows how my glucose levels are impacted by the phases of the moon. In other news…here’s my last fifteen years of A1cs displayed pictorially, but I can also demonstrate them using interpretative dance if you would like me to. Would you? You would, right? Let me just find my Kate Bush playlist on my iPhone…’
Generally, I’m a solid 3.5. I don’t do graphs, I have a vague idea of what my CGM is telling me now-ish, and I can tell you my A1c to within about 0.5 per cent. I call this winning.
I have had periods – extended periods – where I am far closer to zero, which have not been great because that has added ‘not-doing-diabetes-guilt’ to the simple ‘not-doing-diabetes’ which basically equalled feeling crappy all around. And I’ve also been closer to ten – this, for me, was called ‘pregnancy’ – and I was borderline obsessive.
Someone recently asked me if I thought there was a secret to staying motivated. I don’t think there is, because surely, at least one oversharing blogger would have written about it by now.
But I do believe there are small factors that, when combined, do make it easier to remain, if not enthused, at least stirred to keep chugging along with diabetes.
Firstly, in range numbers beget in range numbers, and in range numbers make us want to check for more in range numbers more frequently. It’s undeniable that when we see numbers that don’t cause the response of rage, frustration, sadness, stress or anxiety, we are more inclined to check again. And again.
Technology that helps rather than hinders makes everyone feel better. Many think that it’s a given that new tech makes life easier, but unfortunately, that’s not always the truth, because often – at least to begin with – it requires more input from the user. Actually needing to do more, but not necessarily seeing results is not a recipe for remaining enthused!
Boring tasks are boring, so any way that we can eliminate them or reduce them helps. Making appointments to see our HCPs, finding time to visit a pathology centre for quarterly A1cs (and more) and keeping our diabetes supplies and meds current all take physical time as well as mental time. I have a pharmacist who is like my personal assistant when it comes to reminding me that it’s probably time to reorder insulin and NDSS products and prompts me when I need a new insulin prescription and I cannot tell you how much I love her. She sends me texts messages (totally unobtrusive) and I reply by text and then a day or two later pop in and she has everything ready for me. I can’t remember the last time I ran out of something, thanks to Mae!
But for me, if there was a silver bullet, it would be this: I am motivated because of today. Today, I have been able to do everything I have wanted to do and diabetes has not stopped me, even momentarily. And that makes me want to do it more.
I know that a large part of that is that I have the capacity, the will and the ability to do what I need to make this happen. I speak from a position of privilege, because I also know that the devices I am using – and am able to afford to use – certainly do help me with everything. They have helped to make my diabetes today doable, manageable, and as untroublesome as diabetes can be.
You can threaten me with what is going to happen in five, ten, twenty years’ time; you can tell me about all the disabling and debilitating complications that will happen if I don’t remain motivated and how they will impact on my life as a fifty, sixty and seventy year old.
But unless what you are saying is going to impact on me right here, right now, I can ignore it, and I can ignore the things that may help me reduce the risk of those things happening.
Perhaps that’s where public health messages about diabetes get it wrong. They tend to focus on longer term impacts. It’s not just teenagers who believe they are invincible. Despite a body that each and every day looks less like that of a sprightly youth, I think I am still young. I think all the things that are considered long-term issues are still years off. Being unmotivated doesn’t seem to matter when I don’t need to deal with those issues today.
But when diabetes does impact on my day now, then I notice. More hypos, more hypers, more interrupted sleep, more roller coaster numbers, more exhaustion, more feeling crappy. All of these things make day to day life more difficult. And I want to avoid them as much as I can.
I’m quite pleased with my solid 3.5. Sure, it could be better. Sure I could do more. But it’s consistent. And it’s achievable. Plus, quite frankly, everyone around me should be pleased with the absence of interpretive dance.
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Grumps in Australia last month. (He’s on the left.)
In a former life, I was a music teacher. It was always very clear to me that there was no one way to teach that worked for all kids, and there was a need to somehow tailor my teaching style to meet the kid standing in front of me.
A common cry in diabetes is that no one size fits all when it comes to diabetes management or treatment plans. Surely, that same idea extends to diabetes education.
Today, Grumps is back at Diabetogenic with his next #WWGD post, (which is good because I am far too busy eating my way around Italy). He’s talking about learning styles when it comes to diabetes, and what works for him.
Take it away, Grumps. (I’ll just go back to slurping through this lemon granita…)
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Since being diagnosed back in the dark ages, when there was no internet and my BG check was called a ‘BM test’, I have had to learn medical stuff.
I’m OK with that.
I mean really OK.
I just see my body as the vehicle that I have in order to drive my way through life, to get to the places that I want to be. As I get older this vehicle that I live in gets a bit more banged up. Bits of it get damaged or fail. Hopefully my gear stick never falls off…
I do, of course, have the luxury of age. Diagnosed at the age of twenty-five, it was easy for me to accept immediately, and I just needed to know what manual things I needed to do to compensate for the glitch in my engine management system.
Queue the learning of medical stuff. Constant learning of some quite complicated and detailed stuff.
So, this is where my issues lie. I’m no great student. I have the attention span of a…
I don’t learn well by reading, or listening so if you want me to learn that way, then keep it brief and use simple and short words.
Ah…
That’s not really how medical stuff is written, now is it?
Over the years, I’ve learned a lot about my diabetes, with most of that learning in the latter years with the advent of the internet, social media and good old You Tube. As a visual learner, these have really helped.
Now, these days I’ve had to learn more medical stuff. Different stuff. All about my foot and associated diabetes-related complications, (I know, I don’t mention it often…), and the other day I got the results sent through of my latest MRI scan, packed with medical stuff…
Errrrmm. What?
Faced with all these words and terms… (I know, it’s taken a while to get to this right?)… ‘What Would Grumpy Do?’ (#WWGD)
In a word. Pictures!
A bit of Googling, a bit of fiddling and it all starts to make sense to me.
I sent it to my podiatry team. They liked it and are considering adopting it as an idea for explaining foot issue to the people that are living with them.
I have learnt over time that this is the best way for me to understand all of this medical stuff, which means that I can do what I need to keep this vintage vehicle on the road.
Maybe a person’s learning style should be assessed and understood at diagnosis in order to ensure that all of the information that we need to absorb is given to us in the way we need it to be?
Our diabetes may vary. So does the way we learn.
Live Long and Bolus!
Grumps
You can get more from The Grumpy Pumper by checking out his blog here. And following him on Twitter here.
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I bought a new t-shirt the other day. I saw it on Instagram and decided that I just had to have it. I’m not sure if it was growing up in a mostly female household; or the six years I spent in an all-girls school; or perhaps it’s the friends I am fortunate enough to be around a lot; or maybe the fact that most of the people I work with are dynamic women; or raising a daughter in 2018. Whatever it is, girls supporting girls, and women supporting women is the approach I have always tried to take in both my personal and work lives.
I guess my thinking is that we need to look out for and support each other because we know that outcomes for girls and women around the world are not always that great. And also, when women build each other up, and support and encourage each other, we are unstoppable!
I was thinking about this last night as I followed a Twitter conversation that all started after a somewhat sensationalist article in a newspaper about a bloke (sportsperson?) who, as it turns out, seems to have some diabetes-related neuropathy. As people shared the article and spoke about it, there were a couple of comments from people with diabetes about this person – another person with diabetes – ‘not looking after himself properly’.
When I started reading, I almost pinched myself to make sure that I hadn’t been sucked into some sort of void, and been dragged back to another time. Because this conversation has happened before – countless times. (A search through Twitter and this post pointed me to just a couple of those times.)
Diabetes-related complications and stigma. Diabetes-related complications and language. They go hand in hand. And along for the ride is judgement.
The complexity between diabetes, and developing diabetes-related complications is far too much for my little brain to comprehend. But I do know that there are no guarantees in diabetes. And I know that blaming people for whatever path their diabetes travels is not helpful in any way.
When someone suggests that another person with diabetes is ‘not looking after themselves properly’ there is a lot packed into that. It may not be intended, but that comment is so loaded with blame and shame and judgement that it becomes agonisingly heavy and, quite frankly, terrible.
To suggest that someone’s diabetes-related complications are the result of them ‘not looking after themselves properly’ means that essentially what is being said is that the person intended for this to happen. That they ‘brought it on themselves’. That they deserve to now have to face a future of diabetes-related complications.
To that, I say bullshit!
And, somehow, it is even worse when a comment like that comes from another person with diabetes, because if anyone should understand how harmful judgement can be, surely it is others with diabetes.
Supporting each other doesn’t mean just patting each other on the back and saying ‘good job.’ It is far more than that. It is acknowledging that we are doing the best we can at that moment time with what we have. It’s accepting that there are myriad ways of managing diabetes, and that people should have the right and the ability to choose the way that is right for them – even if we don’t think it is right for us. It is encouraging others’ efforts, cheering their successes and standing alongside them when things are tough. It is being happy for other PWD when they are doing, or being invited to do, great things.
It is not saying ‘You are not doing enough’.
We would be quick to say that it’s not okay for a healthcare professional to suggest that we are not trying hard enough. We don’t accept it when the media make claims that people aren’t looking after ourselves properly. We push back and say it is not okay when those without diabetes suggest that we are not doing our very best.
And in exactly the same way, it is not okay for other PWD to criticise one of our own because, honestly, we should know better. We should be on the same side. We should be building each other up.
It is completely unreasonable to expect that people with diabetes are going to agree on everything, and actually, who would want that anyway? Diversity of opinions is as important as diversity of experience. We all have our own ideas and ways to live with diabetes and there will be times that we completely disagree. That is all fine, as long as it is done with respect.
But even with those differences – differences that we can celebrate – the commonality of messed up beta cells should be what brings us together to be on the same side.
I could be Pollyanna-ish about it all and say that we should just be kind to each other, and that may be a good place to start.
Living with diabetes is fucking hard. We never, ever get a break from it. No matter how manageable our diabetes seems or how cruisy things may be at a particular moment, it is still always there. It doesn’t matter if we are scaling mountains or running marathons. Or living our dreams or travelling the world. Or getting up in the morning and going to work or school. Diabetes does not take a break.
Diabetes doesn’t take a break. But we can give each other one. No blame. No shame. Just an acknowledgement that we are doing the best we can. PWD support PWD. That’s what makes us stronger. That what makes US unstoppable!
P.S. If you really don’t agree with what someone is doing with their diabetes, you can say nothing at all. You don’t have to be critical.
Just over half way through the Australasian Diabetes Congress and after a massive few days, I’ve lost my voice, my way and, my ability to form coherent thoughts. Thank goodness for links and stuff.
Grumps Down Under
Before the Austalasian Diabetes Congress (ADC) even kicked off, our skies darkened, a final Winter cold-blast hit the east coast of Australia and The Grumpy Pumper arrived. Oh, and Melbourne lost our World’s Most Liveable City crown the day Grumps arrived in my hometown. I’m not necessarily saying these things are connected, but that’s a lot of coincidences…
Anyway, Grumps and I spent the next few days drinking Melbourne coffee and tackling the issue of language and diabetes, and Grumps spoke about his #TalkAboutComplications work. The ACBRD team has written about his visit last week here.
Coffee. Because: coffee.
Once Melbourne had enough of Grumps, we headed to Sydney to do more work, including visiting the offices of Life for a Child and catching up with some of the team there.
#OZDSMS
After arriving in Adelaide, it was straight to the conference centre for the first gathering of Aussie diabetes advocates and bloggers for Ascensia Diabetes Care’s Social Media Summit.
Grumps was the special guest and as well as speaking about diabetes complications, he and I led a discussion about decision making in diabetes technology.
You can see what all the chatter was about by checking out the #OzDSMS tag on Twitter, (there was a lot of discussion!), and I’ll be writing more about it in coming days.
Hard at it!
DIYAPS at ADC
The next day, ADC kicked off with a symposium on the Brave New World of Diabetes Technology. Three early Aussie loopers – Cheryl Steele, David Burren and me – took to the stage and you can watch all our talks here:
New DIY Diabetes Technologies Position Statement at ADC
And if you make it all the way to the end (the symposium went for 2 hours all up), you’ll see Diabetes Australia CEO, Greg Johnson, launching Diabetes Australia’s new position statement about Do It Yourself Diabetes Technologies. I am so proud of this world first position statement, something that all diabetes stakeholders from all over the globe have been crying out for. (A reminder to anyone asking ‘Why don’t we have one of those?’: please don’t reinvent the rule. Adapt and use this for your jurisdiction and get it out there to start the conversation.
(Click link to go to position statement)
PWD on stage at ADC
Later in the day, the stage in Riverview 7, I was pleased to stand on a stage crowded with some wonderful diabetes advocates for an ADC first – a symposium on Co-design. More about this another time, but some familiar Aussie advocates shared their work which has really advanced the role of people with diabetes in the development and delivery of diabetes services, activities and resources. I was so pleased to be able to show the new Mytonomy ‘Changing the Conversation’ video as an excellent example of co-design.
Melinda Seed and Frank Sita at the co-design symposium
Sexy new pump hits Australia
And rounding out day one was the official launch of the Tandem t:slim pump which is making its way to our shores next month. This is a sexy, sexy little pump and I know there are going to be a lot of people very excited about it! (The pump is being distributed by AMSL Diabetes in Australia, so keep an eye on their website for more details.)
PWD at ADC
Pleasingly, there has been a presence of people with diabetes at ADC. Probably this is most visible when reading social media updates from the #DAPeoplesVoices. David Burren, Melinda Seed and Frank Sita have been invited by Diabetes Australia to provide updates and commentary of the Congress. They are tweeting machines and have been covering sessions, live-tweeting throughout. But that’s not all! Ashley Ng facilitated a Twitter workshop, encouraging HCPs at the event to get on Twitter and share what they were learning. Kim Henshaw is here from Diabetes Victoria; Tanya Ilkew from Diabetes Australia is also here. Grumps is here. And I’ve been doing what I can in between presenting and meetings.
I crashed last night with my voice gone, and fell asleep wrapped in the memory of a brilliant few days of impactful and meaningful advocacy efforts. There’s so much more to do. But these sorts of events, and opportunities to spend time with other people with diabetes who are certainly on the same wavelength and have the same commitment to bringing in the voice of PWD to all discussions, certainly help to advance our cause.
And one more thing
It looks like it’s that time again, Australia…
Disclosures
I was involved in the planning for the Ascensia Diabetes Care Social Media Summit and attended and spoke at the events Grumps attended. I did not receive any payment from Ascensia for this involvement or for attending the Summit. They did provide lunch and dinner, and gave me a free Contour Next One blood glucose meter. And an almost endless supply of coffee. Ascensia has not asked me to write about any of the work I’ve done with them. But I will, because I like to share and I know there are people who are desperate to know what was going on while Grumps was here!
Grumps was here as a guest of Ascensia Diabetes Care, who brought him to Australia to be the keynote speaker at the Ascensia Australia Diabetes Social Media Summit and to speak at other events about his #TalkAboutComplications initiative.
I was in Sydney last Friday for a day of meetings, and once they were done, I met up with a new diabetes friend, Amira, who I met only a couple of months ago, but had instantly connected with in that way that only those dealing with messed up beta cells do.
I met her at work and then we walked to have a coffee and a chat. After a while, our conversation turned to her work as an optometrist. Amira told me about the camera she uses to do retinal scans.
I mentioned that I’ve never had a retinal scan as part of my eye checks. My ophthalmologist always dilates my pupils and spends a good amount of time looking at the back of my eyes for any changes. This is how my eye care has been managed and I have always been happy with it (and by ‘happy’, I mean: ‘it makes me cry just thinking about it, but I do it anyway’).
‘Would you like me to take a photo of your eyes?’ Amira asked me. ‘You can send the images to your ophthalmologist to keep on file.’
I thought about it for a moment and took a deep breath before answering. ‘Sure,’ I said. ‘Let’s do that! Thank you!’
We walked back to her office and Amira explained how the camera worked and how I needed to position my eyes. After scanning both my eyes, she sat with me and explained exactly what she could see. She pointed out each part of the eye and what she was looking for and patiently answered my questions. She showed me how she could see the artificial lens that had replaced my own when I had my cataracts removed. (And she clarified that the black spot that I was the first thing I saw was actually a mark on the camera – not my eye.)
She told me exactly the same thing I’d heard back in May when I most recently saw my ophthalmologist: ‘Looks great. There’s nothing to be concerned about.’
I wish that THIS was the first time I had ever seen the back of an eye of someone with diabetes, instead of the frightening image shown to me less than eight hours after being diagnosed, when my first endo showed me a photo of an eye with – apparently – diabetes-related retinopathy. I say ‘apparently’ because I had no idea what I was looking at and had no idea what anything meant.
But that image, accompanied by the words ‘This is what happens with high blood sugars,’ has resulted in years and years of seeing an out of range number on my glucose meter and automatically imagining my retina decomposing…behind my very eyes.
This, combined with other scary images used as part of diabetes awareness campaigns, not to mention the occasional poster in the waiting rooms of various HCPs, is why I am so terrified about anything to do with eye care.
And when we also add the blame and shame that inevitably accompanies discussions about complications, using language that disempowers, it is no wonder that my response to Amira asking if I wanted a photo of my eye was to automatically panic.
Despite twenty years of regular checks, with positive outcomes and a supportive ophthalmologist, the legacy of that initial encounter and subsequent frightening images have taken their toll.
Amira emailed me the images of my eyes, and I’ve spent a long time looking at them – because I know what I am seeing (plus, my eyelashes look awesome!). This is information. It is a snapshot in time and, thanks to Amira’s explanations, I understand what is going on .
‘Come and have another scan next year,’ Amira said. I might just do that. While it will be great to have annual images as a comparison, the best part will be I get to spend time with my awesome new diabetes friend!
Amira has provided me with this explanation of the camera she uses and what it does:
‘Ultra Wide Daytona Plus provides contrast and both red-free and green-free filtering, as well as autofluorescence modalities (so we can see layers in front and behind the retina and assess which part is affected).
Photo documentation means we can monitor and track overtime, allowing for early detection. 200 degree retinal scan compared to a standard scan that often gives around 45 degree view.’
I had an endo appointment yesterday. It was my first in over six months, but this was by choice, rather than inattention. Last November, I decided that I really didn’t need a three month follow-up appointment, and my endo agreed. So, after settling my account for the visit, I made an appointment for May this year. A work trip to Copenhagen via London necessitated a reschedule and this was the first appointment time available that worked for me. The six month follow-up timeframe was pushed out to eight months.
Early last week, I called for a pathology request to be sent to me so I could have a blood draw before heading in. While I had a list almost as long as my arm of things I wanted to discuss, I really am trying to stay on top of having regular screenings so that we can compare results year to year.
Clearly, I am in a really good headspace about my diabetes and, in particular, diabetes HCP care, at the moment. I am happy to attend appointments. Even though I needed to cancel the May appointment, I made a follow up and kept it. I had all my bloods done beforehand. This is a far cry from how I was just a couple of years ago … when actually, I was crying just thinking about it all.
So, last Thursday, I made my way to a local pathology clinic, my request slip scrunched tightly in my hand. And I realised that even with my generally low level of worry about all-things-diabetes, I felt my anxiety levels going up in the days leading to, and the day of, the blood test.
‘I’m nervous about having my A1c done,’ I said to someone last week, and, puzzled, she asked why. It was a sensible question to ask, because truthfully, of all the things I was being checked for, that was the one that I had a pretty good idea what the result would be.
I estimated my A1c and got it right to 0.2 percentage points. The truth is, I am totally ambivalent about A1c. I couldn’t care less about the number because my TIR is where I want it, and I knew this would be reflected by a way-in-range A1c number. (I take no credit for it – it’s all Loop.)
But my kidney function? My cholesterol? My thyroid function? Coeliac screening? Everything else? I have no idea how they are tracking. There is no app on my phone to remind me how I going with those, or helping me guess what they me be. I have no Loop for my kidneys!
I realised that was the source of the anxiety, not my A1c, even though that’s where I was pointing. I guess that makes sense: feeling nervous about A1c results is expected and easy to explain. But the truth is that wasn’t my I was feeling uneasy.
Those complications screenings that I am diligently trying to make sure I have annually still terrify me. Both in the lead up to having the checks done, and then as I wait for the results.
The beast of diabetes that lives within our very core behaves in different ways. Often it is slumbering, lying almost dormant, lulling us into a false sense of all is well. I guess that is how I have felt since I started looping. I say that I am the least burdened I’ve ever been my diabetes because my diabetes is not thrashing around and making itself known so much. But this last week, it has started to wake, reminding me of its presence. I have felt diabetes more in the last week than I have in the last ten months.
I tried to describe this to a close friend the other day – a friend who has seen me live through some pretty horrid diabetes times, and celebrate some damn fine ones. She asks sensible questions and is always listening and learning. She gets it. But she struggled to understand how I could move from saying I’ve felt the best I have ever felt in relation to my diabetes to suddenly speaking of the anxieties that I hold so deep; especially when nothing had changed.
It’s the unknown. It’s the waiting. It’s the fear of what I may be told. That is the beast.
Today, the lightness in my step and in my heart as returned. The appointment went well, the results showed little, if any, change from the last screening checks. I am back to feeling the way I was before last week. After stirring, and stretching, the diabetes beast has curled up and resettled, and is hibernating again. At least, for now…
Waiting with diabetes
‘No one asks to get diabetes. And no one asks to be diagnosed with a diabetes complication.’
I don’t know how many times I have said these words – in presentations, casual conversations, in meetings. I feel like a broken record sometimes, but it seems that I’m not done saying it because there are still real problems with the way we talk about a type 2 diabetes or diabetes-related complications diagnosis.
Both are discussed as an end point. And often an end point following failure which is so problematic that it makes every single part of me wince.
‘You got type 2 diabetes because you did/didn’t do this, this and this….’
‘You developed a diabetes-related complication because you did/didn’t do this, this and this.’
And then…there is nothing. There is nothing about what happens next: who to turn to, what help is available, ways to live well. Just some blame and shame and a massive spoonful of guilt, too. You’re welcome!
We need to change this. How different would things be if news of a type 2 diabetes or complication diagnosis was not accompanied with finger pointing at all the things that got us to that point, but instead an acknowledgement that this may feel scary, and a helpful list of what is available to help us.
Being diagnosed with type 2 diabetes is not an end point. Neither is being diagnosed with a diabetes complication. It’s a transition. And at that transition point, we need hope. And to know what’s next. (Cue: Snuffy Walden.)
I caught up with Grumps a couple of weeks ago in London and bored/annoyed him to death with requests for him to write for me again. Success! Off you go, Grumps…
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A couple of weeks ago I was lucky. Lucky that my great friend Renza was in the UK. Lucky that we had time to catch-up. Lucky that JDRF UK invited us both to talk with their staff about #LanguageMatters & #TalkAboutComplications.
Smiley / Grumpy
One of the questions during the session was around how can we get the language matters message out to healthcare professional?
Renza gave her view. I can guarantee that it was brilliant and articulate. But if I’m totally honest, (which I can be now, with her back on the other side of the world again), I wasn’t totally listening.
I’m shit at multi-tasking you see. In fact, I struggle with single tasking most days.
You see I was thinking (another thing I struggle with….)
It’s easy (relatively) to get the message out to my diabetes team:
- Discussions
- Position statements.
- Frowns and a raised eyebrow at the required time.
But what about my extended team?….. How would I do this?
What Would Grumpy Do?
Basically, I did what I often do, (which pisses people off).
I answered with a question.
- ‘Who is in my HCP team?’
- ‘How many HCPs are in it?
- ‘Do I see the same HCP every time?’
Ok. That’s three questions. (I’m also shit at maths.)
I’d kind of inadvertently got a head start on this one because at the beginning of my foot ulcer treatment (fucking ages ago), I considered how joined up my care would be.
Don’t get me wrong. Each team is fantastic and the care is brilliant. It’s not joined up, though.
My brain works, (when it actually works), in pictures. So, I mapped this out:
Grumps’ brain drew this.
There are a lot of HCPs involved here, in several locations and different fields of expertise. The only person present at every single appointment and meeting is me.
So, I am the one best placed to ensure that my care is joined up. In which case, I am best placed to ensure that I am talked to in a consistent way, using the language that I am personally comfortable with.
I’m not saying that its easy. I am saying that it’s my responsibility to try.
The best manager I ever had used to tell me: ‘What you permit, you promote’. If you let people treat you in a way that you do not like, it validates it to them.
Live Long and Bolus!
Grumps.
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
There is something to be said for the comfort of routine. Yesterday, I had my annual eye check. And like clockwork, it played out the same way it always has.
Just like always, the week before my appointment, I received a reminder message from doctor’s office. That cued the call to my dad to lock him in for chauffeuring and morale duties.
Just like always, a little part of the back of my mind was occupied with the upcoming appointment and a series of ‘what if’ scenarios played out.
Just like always, the night before my appointment, my anxiety levels were heightened. I tried to alleviate them with a bit of twitter humour.
Just like always on the day of the appointment, Dad picked me up and just like always, I told him how nervous I was. ‘Twenty years of diabetes now, dad.I’m worried this might be the appointment where the news isn’t all good.’
And just like always, he said ‘Just wait and see. There’s not point worrying before you see your doctor.’ His morale boosting comments, just like always, right on point.
Just like always, I nervously waiting in the second waiting room to be called in to the first appointment.
Just like always, the orthoptist had me read from a chart and put drops in my eyes and sent me on my way to the next waiting room. And just like always, my vision blurred and my heart rate increased.
Drops in; vision blurring. Waiting…
Just like always, my dreamy ophthalmologist called me into his room. (Dreamy because he’s lovely to look at. But more dreamy because he is just so damn kind to me in my ridiculous nervous state). ‘Are you well,’ he asked, just like always asks, and I realised that I have not always answered, ‘Yes. So well…’
Just like always, he said: ‘Your vision and eye pressure look good, Renza. No changes at all since last time.’
Just like always I allowed myself to smile a tiny bit. But no too much. Because the reason we were really there hadn’t happened yet.
Just like always, he turned down the lights in the room and shone an almost painfully bright light into my eyes. He asked me to look this way and then that way. He looked at the front and back of both of my eyes.
And just like always, when he’d looked for all he needed to look for, he turned the lights back on and smiled at me. ‘There is no sign of retinopathy or any other diabetes-related eye problems. Your eyes are great.’
Just like always, I breathed again. I smiled. Really smiled. ‘I’ve had diabetes for twenty years now. Today’s news has made me really happy.’ I said. And I thanked him for giving me such good news.
Just like always I wandered back down the corridor, feeling far lighter. I paid the bill, I found my dad.
And just like always, he looked at my beaming smile and said, ‘I told you so. Just like I always do.’
Step right this way for some diabetes snapshots, information, and inspiration.
URGENT REQUEST TO PEOPLE IN AUSTRALIA FROM INSULIN FOR LIFE
Insulin for Life Australia is in urgent need of Lantus insulin. If you have any no longer needed Lantus (or any other insulin, but Lantus is the priority right now), please consider sending it to Insulin for Life, Australia. More information available here. (If you are not in Australia, please use the same link and request information about where you may be able to send your donated insulin.)
Women’s work
International Women’s Day may have been a couple of weeks ago, but I loved this piece from the Diabetes Mine team paying tribute to women in diabetes.
Researching DIYPS
While we’re talking women in diabetes, this wonderful profile of Dana Lewis showcases not only her trailblazing work in DIYPS, but also how she has moved into researching the technology.
Diabetes devices overview
KQED Science ran this great overview of diabetes devices, including a well-balanced summary of current sensor-based glucose monitors. The piece features another legendary woman in diabetes, Melissa Lee.
Diabetes UK Conference wrap up
Last week, Diabetes UK held their diabetes professional conference in London. They extended the conference by as day to host the Diabetes UK Insider event for people with diabetes which provided a summary of some of the sessions from earlier in the week. (You can catch up on twitter by checking out #DUKPC and #DUKPCInsider tags.)
There was some stellar tweeting from both events from a few twitter stars and the blog posts are trickling through now.
You can read this one from Ros at Type 1 Adventures.
And Ascensia smartly engaged Grumpy Pumper once again to write updates for them, and you can find them here.
Four years
Kim Hislop is a pretty cool woman and recently she wrote a beautiful piece about the last sixth months, which she says have been some of the most difficult times of her life. Four years ago, Kim received a kidney transplant from her mother-in-law and, unfortunately, in September last year, the transplanted kidney was rejected.
Read Kim’s story, including how she is feeling about starting dialysis and what she hopes for her future. She is a truly wonderful person and has been such a wonderful advocate for sharing stories about living with diabetes complications. I really hope she keeps writing.
Please, if you are not already an organ donor, please consider becoming one. Information about becoming an organ and tissue donor in Australia is available here.
Pre-pregnancy planning study
Are you a woman with either type 1 or 2 diabetes aged between 18 and 40 years of age living in Australia? Then Helen Edwards wants to hear from you!
As part of her PhD research, Helen is developing a tool to determine how prepared women with diabetes are for pregnancy. The idea is for the tool to be used by diabetes HCPs working with women with diabetes contemplating pregnancy.
If you are interested in participating, please get in touch with Helen at helen.edwards@adelaide.edu.au.
Just Talking
Last month, I sat down with Christopher Snider and had a chat for his Just Talking podcast. By ‘sit down’, I mean that I was at home in Australia and it was the weekend and I was drinking coffee because it was crazy early, and he was at home in the US and it was … well, who knows when it was – I’m not got at time zones.
We chatted about weird accents (I think we were referring to mine), the Hemsworths and Nicole Kidman, #LanguageMatters (because it does) and other diabetes stuff too.
#GBDOC
I’ve been given the keys to the GBDOC tweetchat bus for this week. I’m talking about including people with diabetes in … well … everything to do with diabetes. I suspect the #NothingAboutUsWithoutUs hashtag might get a bit of a run alongside the #GBDOC tag. Please join me at (UK time) Wednesday at 9pm (which is Thursday at 8am AEDT, because we are the future).
Aims for the chat: don’t use too much Australian slang; limit swearing. I should be right about not using slang…
Spare a Rose wrap up
In case you missed it, the final tally for this year’s Spare a Rose, Save a Child campaign is in!
Thanks to everyone who donated and shared information about the campaign.
