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I run on a double A battery. Yep, that’s what keeps me alive. My pump uses one single AA battery to deliver insulin throughout the day, receive information from my CGM and then report it back to me. The battery lights my pump, makes it vibrate and alarms when it needs me to look at it.
It doesn’t matter that AA batteries are easy to find, without the right tools, it’s not gonna work.
I learnt this last week when my pump battery was completely dead and I couldn’t for the life of me find a five cent (or ten) cent coin to open the battery cap of my pump, extract the spent battery and insert a new, fully charged battery to start giving me juice again.
I rummaged and searched for the right coin and then tried other things, getting more and more frustrated. (FYI – twenty cent coins don’t work, neither does a knife, my finger nail, a piece of cardboard or a pair of scissors). Nope. No luck. Eventually, at the bottom of my handbag, I found a lonely five cent piece and changed the battery, adding the coin to my ‘diabetes contingency bag’ for next time.
Not the right tool.
I needed the right tool.
I was reminded of this yesterday afternoon when I tried to hammer a fallen picture hook back into the wall with a tiny hammer. Didn’t work. No matter how hard I bashed, there wasn’t enough weight in the hammer head to push the picture hook back in the wall.
Anyone else would have probably worked that out just by looking at it. But not me. Possible because I was being…. a right tool.
Am I the only one singing ‘If I Had a Hammer’ right now?
I’ve written before (here and here) about how the day we award Kellion Victory Medals to people who have lived with type 1 diabetes for 50, 60, 70 and even 75 years is my favourite work day of the entire calendar year.
Today was the first 2014 ceremony, and fifteen people were awarded medals, including three who received their seventy year medal.
The amazingness and brilliance and inspiration of these incredible people was captured in this one perfect tweet from Professor Jane Speight. I’ve nothing more to add:
In a dark jazz club in Melbourne, I had a diabetes ‘moment’ when I least expected it. It was ‘diabetes in the wild’, a term Kerri Sparling uses that perfectly describes these sorts of incidents.
This is a serious club. There’s a sign at the door that reminds you that talking during performances is frowned upon. Patrons are there to listen to the music, not the inane chatter of the person at the next table. A ringing mobile phone could result in public stoning. Well, not quite, but when someone’s phone did ring at this gig, the musician stopped playing until it was silenced.
I was sitting at the bar, watching and enjoying the music. Thanks to a pump line that really (really, really) should have been changed that morning, my BGL was a little high. I knew that I needed to do a correction bolus, so I pulled my pump from my top, pressed a few buttons and waited until I saw the insulin had been delivered.
Out of the corner of my eye, I caught the woman to my right surreptitiously staring at me and then looking at the pump in my hand. She looked away and leant towards her friend and, (breaking the rules of the club), whispered something. Her friend, just as stealthily, looked around her at the moment I was returning the pump to its place in my bra and then whispered something too.
What was the interest? Did they think it was a phone or a charger and were about to tell me off for not concentrating on the music? Were they wondering what the hell I was doing reaching into my top and pulling out a weird device the lit up?
I stopped wondering and went back to listening to the music.
About ten minutes later, I saw out of the corner of my eye, the woman take something from her handbag. It was a BGL meter. I swung my head around (clearly I’m not as cool or good at being covert as she was) and looked at her straight in the eye. I suddenly got flustered and looked away again, so thankful the ‘listening policy’ at the club meant I couldn’t do what I wanted to. Which was start a conversation with her (whether she liked it or not) and would have sounded like ‘YOU-HAVE-DIABETES-TOO-OH-MY-GOD-SO-DO-I-HOW-LONG-HAVE-YOU-HAD-IT-FOR-DO-YOU-WANT-TO-HAVE-A-COFFEE-AFTER-WE-FINISH-HERE-AND-TALK-TALK-TALK-TALK-TALK-TALK’. I would have stopped at some point to take a breath. Probably.
The music kept going and I tried to stare straight ahead, and not look over at her again. (Which, of course, I did. Several times.)
At the end of the gig as I collected my things, I turned to her and we looked at each other. I smiled; she smiled back. Diabetes in the club. I collected my bag and we walked out into the cool Melbourne night.
UPDATE
(My friend Kelly who writes at Diabetesaliciousness (read it – it’s great!) just sent me this wonderful diabetes encounter story. Contains cupcakes so it makes it even more awesome!)
The Melbourne International Jazz Festival is on now. Here’s the program – there are some great local and international acts playing.
This morning, I watched our cat, Cherry, spend twenty minutes playing with a rogue BGL strip. She pounced, pumped, threw it in the air, patted it with her paws and meowed for a good 3 minutes, getting louder and louder until I released it from under the bed, where she’d pushed it.
Walking back from getting a coffee, there on the ground was an Optium test strip wrapper, its blue foil glistening in the sunlight.
I pull open a drawer at work and hidden amongst the messy jumble of pens and paperclips are two Unite for Diabetes rubber bracelets. I look further back and find the mushroom-liked infusion inserter for my pump lines. 
I took from my cupboard a handbag that hadn’t been used for years. There, in the bottom, for who knows how long, was an old meter. The battery was flat, the strips out of date.
I open a box from when we moved house and amongst the paperwork and toys and a couple of odd socks, I find three unopened boxes of strips for my current meter, and these ones still in date. And two pump infusion sets.
On my dressing table, jumbled in with my jewellery are several blue circle lapel pins.
I reach into the pocket of a jacket I’d not worn since being at a conference in Barcelona last year and find an information brochure for a pump not released in Australia.
I get in my car and there are spent strips, a spare meter and, in the glove box, a tin of jelly beans.
I open my diary on my desk to write a note and there is a tiny smudge of blood on the page.
The debris of diabetes appears in every aspect of my life.
But it’s not all bad.
My screen saver scrolls through photo after photo after photo and there, amongst pictures of my family, are friends with diabetes. Just in case I ever need some silver lining – there it is!
Friday dancing time! Here’s Stevie Wonder.
Also, this is Cherry the cat. (Photo credit – the nine year old kidlet.)
I was recently sent an article from Medscape that was written by Svetlana Katsnelson MD, endocrinology fellow at Stony Brook University Medical Center in New York.
The gist of the piece is that for a week as part of her endocrine fellowship training, Dr Katsnelson wore an insulin pump and checked her BGLs, and now believes she knows about living with diabetes. She also considers herself non-compliant because she didn’t bolus for an apple.
This may be oversimplifying the article a little and I honestly do believe that the intention here is good. But a little perspective is needed, I think. It was this comment that really upset me:
‘The experience provided me with a better understanding of how to use the devices that many of our patients use every day, but it gave me much more than that. I truly began to understand how difficult it is to live with diabetes.’
No, Dr Katsnelson, no. You do not truly understand how difficult it is to live with diabetes.
What you have is an idea of what it is like to walk around with a device delivering non-life saving saline into your system. You also have an idea of how it sometimes hurts when a sharp object pierces the skin on your finger. You probably could have deduced that anyway because, you know, sharp object, skin, nerve endings etc. You know how the buttons of these devices feel under your fingers and the weight of the devices in your hands.
You may have an idea of how tricky it can be to accommodate a pager-like device if you are wearing a pretty, flowing dress to work (if that is your want). You may now understand how annoying it is to have to stop what you are doing because it’s time to do a BGL check.
But what you don’t understand is that diabetes is about so very much more than that.
Here is what you don’t have any idea about.
You don’t understand the feeling of ‘this is forever’ or ‘I never get a holiday from this crap’. I know that this was acknowledged in the article, but really, you don’t know how it feels to never be able to escape diabetes.
You have no concept of the boredom of living with a chronic health condition, or the monotony of doing the same tasks each and every day over and over and over again!
You don’t understand the fear that overtakes your whole being as you imagine all the terrible complications that have been threatened and promised as result of diabetes.
You have no notion of the frustration of living with a condition that doesn’t have a rule book – and in fact changes the rules all the time!
You haven’t any perception of the fear I sometimes feel that I’ve passed my faulty genetic matter onto my beautiful daughter; or that I am a burden to my family and friends.
You will never feel the judgement from healthcare professionals because numbers are too high or too low – or that there are not enough of them.
You will never be called non-compliant by a doctor or made to feel guilty because you are eating a cupcake – all because your beta cells decided to go AWOL.
While I really do commend the notion of HCPs trying the ‘day in the life’ (or ‘week in the life’) idea, I think that being realistic about what this experience provides is important. It does not give any insight into the emotional aspects of living with a chronic health condition. It doesn’t explain the dark place we sometimes go when we are feeling particularly vulnerable or ‘over it’.
I have to say that all in all, this article left a sour taste in my mouth and I don’t like to feel that way because it sounds like I am being Grouchy McGrouch. I’m not. And as I said, I think that the intention here is good.
I just don’t want Dr Katsnelson to think that she now knows what is going on in my head when I wake up at 4am and every terrible scenario plays out leaves me feeling a pressure on my chest and a blackness in my mind that threatens to overtake me.
But I also want Dr Katsnelson to know that I really don’t expect healthcare professionals to know and understand all of these things. I expect them to treat me with respect and dignity. If this exercise has helped that, then great, but please, call it for what it is.
The article discussed in this post (Svetlana Katsnelson. Becoming the Patient: Not as Easy as It Looks. Medscape. May 12, 2014.) can be accessed here by first creating a free login.
It’s Autumn!
A perfect time to find a quiet place under a tree with a good book.
Cockatoos are everywhere, screeching noisily.
Angels hide around corners.
Trees stand tall, with leaves that are golden and red and glowingly magical.
You never know who (or what) you may find.
And bolus-worthy desserts are crowned with Persian fairy floss.
Last Friday I attended a couple of sessions of the Health Professional Symposium coordinated by Diabetes Australia – Vic and Baker IDI. The packed program covered a variety of topics including cognitive function in children with type 1 diabetes,musculoskeletal complications of diabetes and a panel discussion about whether lifestyle interventions are an effective approach in diabetes management.
The two sessions of particular interest to me were around diabetes in the hospital setting. The first, from DNE Sue Wyatt (Alfred Hospital), focussed on improving diabetes management in hospitals (including discussions about outcomes, policies and procedures) and the second was from dietitian Anita Wilton who discussed food services in hospitals.
To me, both sessions highlighted the problems faced by many people with diabetes when we are admitted to hospital – whether it be for a planned stay or emergency visit. The outlined policies and procedures do not take into account that people with diabetes have different levels of understanding, knowledge and self-management, and the ‘one-size-fits-all’ approach is, I believe, actually detrimental to diabetes care (indeed, diabetes self-care), emphasising the artificial environment experienced when in a hospital setting.
There needs to be a balance between what we as people living with diabetes need when we are in hospital and how we fit into the ‘rules’ and regulations enforced in hospital.
And one issue of particular concern is what happens to our insulin (and other medications), delivery devices and other management tools (BGL meters etc.). At the Alfred Hospital, insulin and delivery devices are taken from the patient. Obviously, this isn’t the case with pumps, but pens and syringes are removed from the person with diabetes and locked away. This is the policy and according to Sue Wyatt, in only one case has this been challenged to the point where the patient was allowed to hold on to their medications.
Unsurprisingly, this doesn’t sit well with me at all.
I raised my hand during question time to ask about how we manage the different needs of the person living with diabetes and hospital policies and procedures that, in this case, go against everything I believe in when it comes to patient empowerment. The answer I received was all about protecting the nurses in the hospital setting and whilst I completely understand and respect the need for that, where was the discussion about protecting the rights of the patient? At no point, when I am a patient, do I give up those rights. I understand that there will be times that people with diabetes are unable to administer their own insulin, but for many, that is not the case. As they are recovering from surgery or sitting in A&E dealing with whatever they are dealing with, managing their own medication is not only possible, but frequently the best option.
In my case, I have never been an inpatient and unable to administer insulin (after calculating doses and entering the correct information into my pump). Being able to address high BGLs and correct accordingly, bolus at the exact time I am eating or treat a low immediately have actually meant smoother management whilst in the hospital setting rather than relying on an already-far-too-busy nurse.
Obviously, it is essential that hospitals have policies and procedures in place, but at the same time, the primary concern should be what is best for the patient. If the talk around patient-centred care is to be taken seriously (and not just perfunctory jargon to make people believe they are talking the politically correct language and saying the right things) then we need to make sure that the patient and their best interests are actually being contemplated.
At no time are my best interests being considered if I am asked to hand over all the things that I need to manage my condition, whatever the setting.
I am employed by Diabetes Australia – Vic. I was not involved in the planning or presenting of any sessions at this event.
I’m tired.
Today, I woke in a great mood after a good night’s sleep. The weekend had been relaxing and lovely – family, friends, food and gorgeous weather on top of it all. Plus, I bought a new necklace with a pineapple on it. It was a good couple of days!
I was standing at my favourite café near work, waiting for a takeaway coffee and thinking that the barista was a magician as I watched his choreographed movements, filling takeaway cups with perfectly brewed caffeine.
‘This good day is about to get better,’ I naively thought, the taste of that first sip of coffee so close.
And then, I checked my email and ‘bam’. There it was.
A discussion about not distinguishing between type 1 and type 2 diabetes in a setting where it really is not relevant. I sighed.
And realised how tired I am.
Nearly thirteen years ago, I was employed to run a very small and, at the time, somewhat tokenistic type 1 diabetes program for a diabetes organisation. Thanks to a very supportive CEO and me being a pushy little thing, the program grew and grew and now, incorporates a dedicated team doing some incredibly good work for people living with type 1 diabetes.
One of the reasons for the program’s success is that we have been very clear about defining it as a program for people with type 1 diabetes, making sure the information we provide is targeted and relevant to the people we are trying to reach. We acknowledge each and every day that people with type 1 diabetes have specific information requirements and then we go about providing that information in the way people want.
In exactly the same way, a couple of years ago, we realised that the information for people with type 2 diabetes was completely forgetting the changing face of the type 2 diabetes community. There are more and more younger people being diagnosed with type 2 diabetes and the information we had was very much for an older audience. Hence, Generation T2 – a new program for 18 to 39 year olds with type 2 diabetes.
There are times that it is important to distinguish between the diabetes and there is no louder advocate for that than me.
But there are times that it is irrelevant. Yet, people still get angry – even when it really doesn’t matter if the type of diabetes is defined.
I am tired.
I am over this argument and this discussion.
Last week, the government handed down a budget that is going to hit the hip pockets of people with diabetes like never before. All people with diabetes will be affected – regardless of type.
During the World Diabetes Congress we heard of places around the world where the cost of insulin is so prohibitive that there are people dying because they cannot afford to buy the drug they need to stay alive. Slow, painful, horrible deaths because they cannot afford to buy insulin. Just think about that for a moment.
Here in Australia, there are people who cannot afford to use an insulin pump despite desperately wanting to because they cannot afford private health insurance or qualify for the Insulin Pump Program to assist with cost of purchasing the $9,000 (plus) device.
These are the issues that we should be fighting for and getting angry about. These are the issues that are important. Access to healthcare – a basic human right for all people – ALL people with diabetes – is what the topic should be; not whether or not the Channel 10 news forgot to say type 1 (or 2) before the word diabetes.
I am a card carrying member of the diabetes community. I am proud of this community and I am pleased to have a voice within it.
But we need to stop the finger pointing and the name calling and the blaming. How can we expect people outside of our community to get it right if we can’t? Why is it more important for people to understand the how and why we got this condition as compared with the how and why we’re trying to live and manage with it?
I am proud of the Australian diabetes community, but it is here that I hear this attitude more than anywhere else in the world. This discrimination is not helping us – it is harming us. Does it matter if people don’t really understand the different types of diabetes? I get it. It’s annoying, it’s frustrating; it’s constant. But really; does it matter?
This is a first world – a first class – problem.
And I am tired. I am saying it’s time to stop. Enough!
It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today it’s diabetes in pictures. Come back tomorrow for the last instalment, and in the meantime, check out #DBlogWeek and follow along!
It’s Saturday and this morning, I had to work for a short while at a diabetes event. And when I was done, there was only one way to celebrate the real start of the weekend. With these:
A new cafe has opened up in my ‘hood serving amazingly good coffee and this fabulous dish. Yes – the doughcakes are delicious. They’re fluffy and light and filled with strawberry jam, which oozes out onto the serving board in a most pleasing way. But the most exciting thing? The bacon ice cream. Yes. Bacon. Ice. Cream.
Has there ever been a better nod to the DOC than this very dish? The only way it could be better if it was served up by unicorns.
So yes. I can eat that, and thanks to that nifty little pump thing, insulin takes care of all the carbs.
There seems to be a little bit of a theme to my Saturday Snaps for Diabetes Blog Week. Last time this was the prompt, I wrote (and snapped) about cupcakes. Apparently, when it comes to pictures of diabetes, it’s all about the food for me!
It’s the fifth annual Diabetes Blog Week, with thanks to the lovely Karen Graffeo from Bitter~Sweet Diabetes. Today we’re talking about some of the sneaky things we do to make life with diabetes a little easier. Come back tomorrow for the next instalment, and in the meantime, check out #DBlogWeek and follow along!
Oh diabetes, you are a hard task master! There is much to do, so anything I can that makes life that little bit easier is a blessing!
Some of my ideas are just plain stupid, some of them actually make my life with diabetes run a little smoother. Others, I guess, are just habit now. So here is how I manage some of my day-to-day diabetes tasks.
- Insulin prescriptions are kept in the fridge next to my actual insulin supply. This way, I always know where the next prescription is, can easily check if it’s in date, making it easier when it’s time to fill a new prescription.
- When I open the second to last bottle of insulin, I call my pharmacy and put in an insulin order. I used to do this when I opened the last bottle, but that kinda didn’t work so well for me when I dropped the bottle. And then stepped on it. In a pair of boots. Smashed to smithereens insulin bottle (and insulin) not useful at lowering BGLs.
- Spent pump lines are brilliant for tying up roses!
- Ugly, (but effective) bandages work as a pump holder/holster under sexy dresses (and don’t roll down my leg).
- I keep a box of Golden Circle pineapple juice by my bedside. Easier to drink when it’s at room temperature and great for middle of the night hypos when the thought of eating anything is just beyond me.
- But for when I am happy to eat something, I make sure that the jelly bean jar on the bedside is always full. I hate having to get out of bed to get food to treat a hypo!
- Thanks to diabetes, my handbags are huge! So to make finding my meter easier, it’s always housed in a bright purse.
- An in another nod to the huge handbag, I have my diabetes contingency purse that takes care of pretty much any diabetes emergency: pump out of insulin? No problem! Open vial of insulin at the ready. Ripped our pump line on door? Stupid, but doesn’t matter! I have a spare line. Cartridge in pump jammed? Never happened, but if it did, not a problem. Spare one in purse. Pump completely died and not wanting to work ever again? Shitty, but manageable with syringe and insulin.
- As I walk out of the consulting room for my endo (or other HCP) appointment, I head straight to the receptionist to not only settle the bill, but also make the follow up appointment (or the next couple) and the date is entered straight into my calendar, with a one week out alarm to remind me. That way, no need to call to make an appointment – something that always gets put off!
- Pathology tests that are needed for medical appointments are scheduled in my iPhone calendar for two weeks before the appointment. No point in showing up to discuss results if the tests haven’t been done!
- I have made sure I have never-ending referrals for my endo and ophthalmologist. Just ask your GP and if they won’t do it, find a GP who will!
I’m sure that there are lots of other things and I’ll add them as I think of them. I am really excited about today’s prompt for #DBlogWeek because it’s hearing tips, tricks and life hacks from other people with diabetes that make MY life with diabetes easier. Can’t wait to learn lots of new things.
The ultimate in Friday office dancing – Nancy Sinatra and ‘These Boots Are Made for Walking’.
Diabetogenic 