Diabetogenic

Debris of diabetes

May 30, 2014 in Devices, Real life | 3 comments

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 The battery was flat, the strips out of date.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.)

Wearing an insulin pump does not make you a person with diabetes

May 29, 2014 in Advocacy, Awareness, Diabetes, Healthcare team, Real life, Wellbeing | 14 comments

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.

Autumn (for a not-quite-Wordless Wednesday)

May 28, 2014 in Food, Real life | 2 comments

It’s Autumn!

Daylesford5

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.

False hope

May 27, 2014 in Awareness | 5 comments

Eat Right and Exercise To Keep Diabetes Under Control promised the email that landed in my inbox at about 3.30 yesterday afternoon. At exactly the same moment I really wanted a loaf of white bread with Nutella and butter. Yes. Real butter.

I receive these sorts of emails quite frequently, including this one:

That one arrived a week ago, so I’m expecting to be cured in about 14 days. I’ll let you know how it turns out, but if everything goes to plan, this blog will be defunct in a couple of weeks. Woot! I plan to then blog about something interesting. Like butter and Nutella on white bread.

There is false hope spread through many channels; each and every day. These days, I snort, ignore, share on SoMe and maybe swear (okay, always swear) at the stupidity of these snake oil cures that promise to fix my faulty immune system in one simple step (or three short weeks).

Once someone told me that I needed to read The Secret because that would not only cure my diabetes, but also ensure I found a parking spot every time I needed to. Versatile!

Why can’t these emails tell me to Drink coffee and apple martinis, and have an afternoon nap every day to cure diabetes (or even just keep it under control)? Or Sit by the beach looking at the waves breaking to keep BGLs under 8. But above 4. All the time.

I have had diabetes long enough and have received enough promised cures to know that these are all baloney and I call bullshit on all of them. But they still annoy me because for some people – people newly diagnosed; people fed up with living with diabetes; parents of kids with diabetes – these false promises provide false hope. When you’re looking at anything to stop the pain, the distress, the tedium, the anxiety of living with a chronic health condition, sometimes you want to believe in a miracle cure.

I’ve unsubscribed from the list that sent me the email yesterday. But I know that tomorrow, or the day after, or next week there will be another promise in my inbox or Twitter stream that promises to fix my beta cells. That I can guarantee.

Blankety blank

May 26, 2014 in Devices, Diabetes, Pumps, technology | 6 comments

I woke up this morning with that unpleasant and disagreeably familiar feeling. Ever-so-slight nausea, furry mouth and a desperate need to go to the loo. Why was I high? I grabbed my meter and a lovely number in the low 20s appeared for me. ‘Eff you, diabetes’ I thought.

I rushed to the loo, brushed my teeth, drank two glasses of icy-cold water. And grabbed my pump to see a completely dead, black screen. ‘What the eff?’ (Second f-bomb for the morning and I’d been awake for a total of five minutes. It was shaping up to be a good day.) I pressed buttons, trying to wake my pump up. Maybe it was having trouble getting the week started too. Nothing. Completely and utterly blank and unresponsive.

Blankety blank.

I rummaged around for a spare battery and located one in my diabetes supplies bag (seriously, every contingency is catered for in that bag!) and changed batteries. It responded with a lovely sounding ‘Boo-beep!’ and fired into action.

I primed, bolused, checked for ketones (too little to be too concerned about), drank more water and started my getting-ready-for-work routine.

Crisis averted, but how long had my pump been dead? And did it alarm? And if it did, how did the whole household not get woken by it? (And the neighbours for that matter. Living in inner-city Melbourne means we almost live on top of each other!) The alarm on the pump is loud, constant and downright annoying until it is silenced with a button push (or new battery). It wakes everyone – people and pets alike.

There was no low battery alarm before bedtime last night, so I had no warning this was going to happen and I slept like a log, not waking for anything until the alarm went off this morning. Is it possible that my pump had died just after I went to bed and I was insulin-free for 8 hours? Surely not, given the negligible ketones in my blood this morning.

I’m putting in a call to the pump company today because I don’t think that this is okay. There needs to be a much longer warning period for a dying battery.

Now I’m at work and I have that slightly fuzzy-head feeling that comes from high sugars. I’m guzzling water and checking my sugars (and ketones) regularly, trying not to over-bolus in a desperate attempt to get by BGLs back into single figures.

A dead pump. In 13 years of pumping that’s never happened. Diabetes – and diabetes therapies – have a way of making sure you never get complacent. Effing diabetes. (That’s number three…..)

Shrinking away

May 21, 2014 in Diabetes, Wellbeing | 6 comments

I don’t deal with stress particularly well. I shrink away.

I don’t eat; simply unable to stomach the thought of food or drink and getting through the day with water and gagging on whatever I force down.

I also go to ground, staying at home, not wanting to engage with anyone, switching off online, not blogging or posting to Facebook or Twitter or Instagram.

Recently, I caught up with one of my best friends after a (very unusual) three week break. ‘What happened?’ she asked. ‘The last time we saw each other you said you weren’t feeling great and then I didn’t see you for three weeks and you didn’t respond to my messages.’

I stopped and thought about it. And realised it wasn’t her that I was trying to avoid – why would I? She is nothing but supportive and wonderful and lovely. It was me.

‘I’m sick of myself,’ I heard myself saying. ‘I am sick of what’s going on. I’m sick of the diabetes burnout I’m experiencing. I’m sick of it all. I just want to disappear.’

I wonder if that is what I am trying to achieve when I am dealing with a stressful situation.

I stop eating and see and feel myself shrinking away.

I stop standing tall, instead wrapping myself in blankets and jumpers, folding into myself and taking up less space.

I stop seeing people so I don’t have to hear myself talking.

I limit my online presence, making my cyber-self withdraw.

Am I trying to make myself disappear somehow? Shrink away from the world and my problems?

I want to take up less space, not fill a room, curl into a corner of my bed. I want to be small. And insignificant. Because what I am dealing with seems so big – too big – and momentous. I want to be less weighty because the problems are bearing down on me.

I see this clearly when I emerge from the fog. As I stretch and look for sunlight and see people and engage again, I find my voice and start to feel bigger. Literally and figuratively.

Surrender

May 20, 2014 in Advocacy, Healthcare team, Real life | 7 comments

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.

Enough!

May 19, 2014 in Advocacy, Awareness, Diabetes, Language, Real life, Stigma | 17 comments

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!

Diabetes Blog Week – Snap!

May 17, 2014 in #DBlogWeek, Devices, Family, Food, Language, Pumps, Real life | 6 comments

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!

Diabetes Blog Week – Life Hacks

May 16, 2014 in #DBlogWeek, Real life | 3 comments

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’.