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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.’
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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.
New year, new jumble. And lots of saved links from the last few weeks to share.
#OzDOC 2.0
Did you know that after OzDOC had it’s ‘final’ tweetchat at the beginning of December last year, it’s had a reboot and is now continuing to go at a great rate. David Burren (AKA Bionic Wookiee) kicked off the chat but is looking for people to volunteer to the moderators’ roster. There’s a brand new Twitter account to follow (@OzDOC_host), but the #OzDOC hashtag continues to shine brightly.
Same #OzDOC time, same #OzDOC channel. (i.e. Tuesdays at 8.30pm AEDT)
And while we’re talking tweetchats…
…make sure you keep an eye out on the #GBDOC tweetchats, which also had a bit of a restart last year and are going absolutely brilliantly. Follow @GbdocTChost for topics and moderators.
Now is a great time for Aussies to participate in #GBDOC because with the time zone difference, the chat is on Thursday 8am AEDT…which is actually quite pleasant. (It all goes to pot and becomes more difficult when daylight saving kicks in/out in respective hemispheres in coming months, but for now, it’s certainly manageable!)
Jane’s profile
It’s no secret that I’m a huge fan of Professor Jane Speight and I make no apologies for mentioning her so frequently on this blog. She is truly a champion for and of people with diabetes and her pioneering work on diabetes and #LanguageMatters, and social stigma are changing the landscape for those of us living with diabetes.
Last week, a profile of Jane and her work was published in The Lancet. Congrats, Jane. I can’t imagine a more worthy recipient of this attention. Please keep on keeping on. I for one am very grateful to have you on our side!
Read the article here – it’s free, but you will need to register/log in to access it.
(Click photo for source)
Dear ‘patient’
I was really interested to read this BMJ Opinion piece about medical letters, with the writers suggesting that instead of addressing ‘report letters’ to referring (and other) doctors and HCPs, that they should be addressed directly to the person, CCing in the doctor who would ordinarily have been sent the letter.
I love that idea! My endo generally copies me in on anything she sends out to my other HCPs to keep me in the loop, but I think that actually writing directly to me is even better.
HCPs would need to completely reconsider the language they adopt, the terminology they use and the overall tone of the communication, and I believe that there is nothing that should be shared with another HCP about me that shouldn’t be shared directly with me.
Interesting idea. And interesting to see if it has legs…
Writing for Grumps
After writing for me a few weeks ago, I returned the favour and wrote a post for The Grumpy Pumper. (I think the deal he made was something like ‘I’ll show you mine if you show me yours’, so I had to come up with the goods.)
This is all part of Grumps’ attempts to get people with diabetes speaking about #TalkAboutComplications in an open and honest way to help reduce the shame that seem to go hand in hand with a complications diagnosis.
Get ready for Spare a Rose spam
This year’s campaign is about to kick off. And if you want to know why I support this campaign, here’s just one reason.
Hospital admissions and T1D study
Rebecca Munt from Flinders University is currently enrolled in a PhD at Flinders University and is looking for participants in her research.
The focus of her study is to explore the experiences of self-management for adults with type 1 diabetes in the hospital setting (when T1D is not the primary admission diagnosis). If you’re interested in participating in Rebecca’s study, have type 1 diabetes, are over 18 years of age and have been admitted to hospital within the last two to five years (not for diabetes), please call Rebecca on (08) 8201 5749 or email rebecca.munt@flinders.edu.au
(The project has Social Behavioural Research Ethics Committee approval from Flinders University.)
Future of medical conferences
I have been very vocal in recent years about the shortcomings of diabetes conferences, specifically the lack of involvement and engagement of people with diabetes as part of the planning, running and presenting of the conference. So this piece really resonated about why medical meetings need a revamp, and some ideas for what could be done differently.
(Click for original tweet)
Because #NothingAboutUsWithoutUs.
Does the story we know and love about Banting need a rewrite?
I was fascinated to watch the short documentary shared in this story which suggests that the frequently-told story of the discovery of insulin is missing out a critical part.
It was the best of times, it was the worst of times…
This blog post by Sue Robins detailing two vastly different medical appointments is compelling – and quite heartbreaking –reading.
More D Merch
Totally true!
Click image to get your own!
Towards the end of last year, I wrote about some things happening online trying to encourage people to openly and freely speak about being diagnosed and living with diabetes-related complications.
When conversations about diabetes complications are brought into the public domain, often two things happen.
Firstly, people start to talk. That whole cornerstone of peer support – reducing isolation and sharing stories – flings doors and windows wide open, and people, often gingerly at first, start to offer their own experiences. Inevitably, someone will say that they don’t speak about their complications because they fear the judgement that will follow. Or that they believe they are the only one their age facing complications because they have never met another person, or read a blog post from another person sharing a similar experience.
Secondly – and most damagingly – there is judgement. And it comes in spades, often sending some of those who had started to open up retreating back into the depths of diabetes taboos. This is not helpful for anyone.
So I wasn’t surprised when, during a useful discussion starting online about living with diabetes related complications – which resulted in some people willingly talking about their own experiences – the horribly judgemental comments started infiltrating the conversation.
I shared this post that I wrote almost five years ago about why we need to reconsider the way we speak about diabetes complications as I thought it was relevant to the current online conversation. In fact, everything I wrote in that post was still true because diabetes continues to be a terribly stigmatised condition and, within that, those of us living with complications seem to face additional stigma and judgement.
If for one second anyone doesn’t believe that statement, here are just some of the comments that I received (on LinkedIn and Twitter) after sharing the post:
‘If considering that many people who are type 2 diabetic quite simply exercise too little and eat too much fat…… which has immense financial consequences for the provision of healthcare…….. how else do you propose to get these people to lose weight and stop emburdening (sic) themselves on our NHS? If you take away the need to shame them you take away the most powerful way of making them take responsibility for their health.’
‘Sorry Renza but if we get complications of diabetes then we have failed. We are each responsible for own health and must try to maintain it at all cost.’
‘Diabetic complications do not happen with ‘perfect’ blood sugars. I agree that we must be supportive and sympathetic and the insulins available don’t help but it’s still the patient’s responsibility and not the doctors. Sorry if this doesn’t bode well with you.’
Is it any wonder that people are reticent to speak about developing complications if people are thinking like this?
I have written before that I believe diabetes has an image problem, because I can’t think of any other health condition that, if a treatment does not get the desired outcome, the person living with that condition is blamed. I have never heard someone being blamed if the cancer for which they are being treated does not end up in remission. I don’t know of anyone with rheumatoid arthritis who is blamed if their pain increases or their mobility decreases. I’ve not heard of someone with psoriasis being accused of not caring for themselves if their skin flares up.
But all bets are off when it comes to diabetes and fingers are pointed fairly and squarely in the face of the person living with diabetes if they develop complications.
Diabetes complications happen. It is, unfortunately, a reality for many people living with diabetes. I’m not trying to be negative or scare people, but we know that the longer we live with diabetes, the more likely we are to develop complications.
In this post, The Grumpy Pumper says: ‘Complications are a hazard of what we have. Not a failing of what we do.’ Maybe if we take that as the starting point we can take away the blame. And maybe if we take away the blame, we break down the stigma. And maybe if we break down the stigma, we can start having a real discussion about how we treat complications if they develop, and get to treating them.
And maybe if we stop thinking that developing diabetes and anything that happens after living with it is a shortcoming we can stop feeling so judged and shamed, because others will stop judging and shaming us.
More to read on this topic:
Riva Greenberg shared this one.
Sarah K from Sugarbetic wrote this.
‘Grumps? Grumps? When are you writing for me?’
Last year, The Grumpy Pumper wrote a couple of posts for me in what was going to be semi-regular series called What Would Grumpy Do? Actually, the idea that it was going to be a semi-regular thing was news to Grumps, and because he doesn’t like to be told what to do, it’s been over a year between posts.
Earlier in the month we were in Abu Dhabi at #IDF2017 together, and every second thing I said to him was a variation of ‘When are you writing for me again? Grumps? Grumps? Grumps? Hey, write something. Now! Grumps?’ As it turns out, four days of me asking the same thing yields results. Who knew?
So here’s Grumps’ recent diabetes complications story. and his efforts to get people talking about complications to reduce stigma.
Off you go, Sir Grump-a-lot…
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‘I’m afraid you have a diabetic complication Mr Pumper.’
(I’ve had the language matters talk, don’t panic)
How would you feel if you heard this? What would you do?
Well, at that point in time, I asked myself: What Would Grumpy Do?
To set the scene…
I had a bloody great hole in my foot.
I was at the podiatrist.
So, let’s face it, I did not fall off the chair in shock.
The conversation went something like this:
Grumps: What kind of complication? You can tell me straight. It’s my foot, right?
(Cue eye rolling by podiatrist. I don’t blame her. Dealing with me is a challenge at the best of times.)
Podiatrist: Yes. It’s an ulcer.
Grumps: Caused by the blister I told you about that burst, healed over but must have had some crap in the wound?
Podiatrist: Yes, that’s it.
Grumps: So it’s caused by my diabetes then?
Podiatrist: Oh no, not the blister, but your neuropathy means it will take longer to heal.
Grumps: So that big hole in my foot isn’t a complication of my diabetes; it’s complicated by my diabetes?
Podiatrist: Well. I guess so…
Me being me, I don’t care what it’s called, nor how I’m told, because if I’m totally honest it doesn’t bother me. Not much does. I’ll take whatever comes, deal with it and move on.
But I wanted to make a point. Things can be viewed very differently depending on who you are and how you feel about things. And how you feel about things can depend on how things are worded – that can massively influence things.
Anyway, to cut a short story long, a precautionary X-ray and a consultant later it was confirmed that there was no bone infection, which was good. It also showed that about a year ago I had broken two bones at the top of my foot and also smashed the joint in one of my toes – fuck knows how. (I remember a lot of swelling in the foot and bruising.)
Instead of healing, the bone had degenerated and gone ‘chalky’. Over time that hardened and went back to solid bone (as I understand it). So the toe joint isn’t a joint now, and the foot is slightly warped (just like my sense of humour). The Charcot (the chalky thing) is no longer active, but I am at risk of it happening again if I get another trauma to the foot.
All of which is good!
Why the hell would I think any of that was good?
The hole in my foot uncovered all the other stuff, so to be honest, I’m glad I got it. If I hadn’t, I would still not know. The Charcot isn’t active so there is nothing that needs to be fixed. I now know that if I get similar symptoms, or become aware of any trauma, I need to get it looked at ASAP. And I know the route to make sure that happens.
So, all good in my book.
I went home and did what any self-respecting Grumps would do: I waited until it was dinner time in the UK and then posted a gross picture of my foot for all to see. I described the issue and raised the subject of my complications.
This sparked a very good online discussion about compilations with other PWD talking about theirs and others seeing that they are not the only one with them. And there is no shame in having them. Sharing experiences and taking comfort from others; for me, that’s what peer support is about.
We are all in the same boat. It’s just that the boat is full of holes. If we try to bail out the incoming water on our own, at some point we will drown. It we help each other; we can keep our heads above the water.
I am not ashamed about my complications. I never will be!
I will Grumpily tell everyone that wants to listen, and post disgusting pics that pop up on your social media feeds just as you are about to tuck into your favourite meal.
I’m not sorry about this!
Complications are a hazard of what we have.
Not a failing of what we do.
#TalkAboutComplications
Live Long and Bolus
Grumps
Grumps’ snazzy new footwear.
Want more from The Grumpy Pumper? Check out his blog here. And follow him on Twitter here.
A recurring theme throughout last week’s ADS ADEA meeting in Perth was the need to manage expectations. I think, in general, we do a really lousy job of this in diabetes.
We’re told that can expect to live a ‘normal life’ after a diabetes diagnosis, when that’s not necessarily the truth.
We’re told we can expect to eat whatever they want, when really, the effort that goes into calculating medication doses depending on the nutrient value of our foods is hard and it may be easier for some to actually limit food choices to make things a little easier.
We’re told to expect a cure in five years’ time, when the truth is that a cure is not even on the distant horizon.
We’re told that we can expect new technology to significantly reduce the burden of living with diabetes, when the reality is that sometimes, it’s more – not less – work.
We’re told to expect person-centred care, when, really, our health system, is not designed to cater for the individual needs of people living with diabetes.
We’re told that emerging technology will be fully automated, smart and cure-like, but we are not told that there will still be human-input necessary and that the devices are not as smart as a functioning pancreas.
We’re told that if we keep our A1c below 7% we can avoid complications, and yet, there is no guarantee, and some of us do develop complications despite an A1c regularly hitting that magic number.
We are told that if we count carbs and dose the right amount of insulin at the right time, we can keep our glucose levels in range, often neglecting to be told that there are a lot of other factors at play.
We are told all this, and then, when these expectations are not met, we are told we’ve failed. Or we are disappointed.
Here’s the thing. The tools are actually really great. Our health system here in Australia is mostly terrific. The majority of our HCPs genuinely do want to give us the best care they can. We don’t need to oversell things as much as we do.
Our expectations are being set so realistically high, that it’s impossible to meet them.
So, THIS is what I would like to say about all the things I’ve covered above to help manage expectations:
Your life will be different after a diabetes diagnosis. But that’s okay. Your new normal is going to be different to your old normal, but hopefully, there will be very things that diabetes will prevent you from doing. Acting like a pancreas is not really normal, but you can do it!
Yeah, you can eat whatever you want. But it’s undeniable that certain foods are harder to manage after your pancreas decides to go on strike. Find what works for you – and that can change. But do be prepared for food to become something that can be a little fraught because you may find that some of your most favourite foods are a little difficult to deal with.
Researchers are brilliant and amazing and the advances in diabetes management are actually quite mind blowing, but a cure? We’re nowhere near that yet. Keep up to date with everything and try to mine through it to work out what is relevant for you. Keep getting excited about management and tech advances – but do keep it in perspective. (Also – consider the source. I promise you that the Channel 10 news or Buzzfeed is NOT going to be where you learn that diabetes has been cured forever.)
You are going to have a lot that you will want to know and work through, and possible a variety of healthcare professionals to see. As wonderful as it would be to have someone to coordinate it all for you, you’ll have to put in the leg work to find the right team, the right service and the right people. And then, once you’ve found them, it’s still up to you to direct what you need. Otherwise you might find yourself at the mercy of a system that is not really going deliver exactly what you need to get the most from it.
You may have heard that in the US there is a (hybrid-closed loop) pump/CGM combo. Some are calling it an artificial pancreas. It’s not. The tech is incredible, but it’s not fully automated. It still requires calibration and it still requires operator input. This is not me being negative, because the tech is exciting. It’s me being realistic about the level of automation
No new devices are going to completely remove the load diabetes adds to your life, or your involvement in their operation. Insulin pumps need buttons pushed; CGMs need calibration, food needs to be considered. Full automation may be the goal, but it’s a while off.
An A1c of 7% or below will indeed reduce your risk of developing diabetes-related complications and there is a lot of evidence to support that. But it doesn’t eliminate the risk. That’s the annoying and somewhat unfair reality of diabetes. Unfortunately, it’s the reality. Obviously, do what you can to manage your diabetes as well as you can. But don’t expect that a number is a guarantee of anything.
Carbs and insulin are only part of the equation. How you’re feeling emotionally, illness such as colds and flus, hormones, nutrients other than just carbs, the phase of the moon (well, maybe not) … all these impact on your numbers. And they change. Don’t expect that there is an equation that will work all the time.
In life, we’re often told to expect the unexpected. But in diabetes, the unexpected is often only that way because what we have been told to expect is unrealistic. If we were told the truth, and provided with realistic expectations from diagnosis – and throughout our diabetes lives, perhaps we wouldn’t feel that we’re constantly falling behind and failing.
Here’s me and my boss talking about expectations in technology.
Disclosures
Roche Diabetes Australia has covered my travel and two night’s accommodation for my stay in Perth as I am a presenter at the Roche Educators Day (RED). There is no expectation from Roche that I will write anything about the RED, but I expect I will because it’s always such an interesting and enjoyable day!
The remainder of my time in Perth is part of my role at Diabetes Australia.
