Diabetogenic

The worrier

June 11, 2014 in Diabetes, Eyes, Wellbeing | 4 comments

I don’t consider myself a worrier. I never assume the worst, in fact, always assume things are NOT the worst. A cold is a cold – never pneumonia. I’ve had my thyroid operated on because of a benign lump, and when I’ve found subsequent lumps, have never thought it anything other than a pesky bit of rogue tissue. And I’ve always been right. ‘I’ve got this!’ I tell myself as I deal with pretty much any health stuff.

A headache is a headache – certainly not a migraine and definitely not a tumour.

But all of this is thrown out the window when it comes to how I behave about eye issues. I panic, I am paranoid and I expect to hear the worst.

I’m not sure why it is diabetes eye complications that cause me the most concern. I don’t seem to get as panicked when I have my annual kidney screening or have my cholesterol checked. It’s the eye thing that gets me each and every time.

Recently I had my post-cataract check-up. I was actually seeing the doctor because I noticed a slight change in vision and some pain in my left eye, but in addition to sorting that out, I would be having a full eye examination. My ophthalmologist would be making sure my new lenses had settled in okay and were doing whatever lenses are meant to do, and while I was there, he would be having a good look behind my eyes to check for any diabetic retinopathy. He would have a really clear view for the first time now that those pesky cataracts had been removed.

With this in mind, I was not thinking that everything would be clear and look fine. I was expecting to hear that the changes I’d noticed signalled some retinopathy and we would have a discussion about treatment. I did not think that all would be fine. I worried. I didn’t feel that I had this at all.

Following a routine distance vision and pressure check (all fantastic), my pupils were dilated and I was sent back to the waiting room. I concentrated on my vision getting blurry and felt my breathing quicken as I waited to be called back in.

My lovely ophthalmologist, now more than used to my histrionics, joked about how relaxed I was becoming seeing him. I twisted my mouth into what I hoped was a smile and told him that even after having cataract surgery, eye things still made me nervous as all get out!

He started by taking a look at the new lenses and was pleased to see that they were great. No problems post-cataract. There was a small scratch on my eye which explained the pain, but nothing else at all. And then he checked my retinas.

‘It just doesn’t make sense’, he said, snapping the light back on once he’d had a really good look at both eyes – checking and checking and checking again. ‘Those cataracts were pretty nasty and you got them very young. But there is absolutely no diabetic retinopathy in either of your eyes. Nothing at all! It looks really, really good, Renza.’

I could feel my shoulders relaxing and realised I’d been holding my breath. He was watching me carefully. ‘I don’t need to see you for a year, Renza – unless of course you notice a change. Your eyes are great. But I think we need to talk a bit about you worrying so much about your eyes. You do everything right here. You come and see me regularly. You made the decision to have your cataracts removed at the right time. You may get some diabetic retinopathy, but we will pick that up early and treat it. Your worry is understandable, but not necessary. Are you speaking with someone about it?’

I started to tell him that I’m really not a worrier. I don’t get anxious about things. But my eyes….my eyes. I don’t know if it’s all tied up in the anxiety and fear I have of physically having my eyes checked or if it is something else. But I stopped myself, because he is right. I am a worrier about this.

I thanked him for being so kind – and for being the bearer of good news. I may have hugged him a little. And I left. I paid the bill and made an appointment for twelve months’ time. I clamped on my sunglasses and prepared myself for dealing with the bright Winter sunshine. And I breathed. No need to worry today. I’ve got this.

#iCan

June 10, 2014 in Advocacy, Awareness, Diabetes, Real life, Stigma | 1 comment

This week in the UK, it’s Diabetes Week. I’m always interested to see the focus of campaigns for awareness weeks and this has to be one of my favourites!

Having lived first hand through diabetes weeks that have involved ticking time bombs and threats of every single diabetes complication under the sun, I wish I could give a proverbial hug to the team at Diabetes UK who have put together an empowering, positive campaign. In lieu of that, I sent a tweet.

Using the slogan ‘I Can’ the campaign acknowledges the difficulties people with diabetes may experience, but wants to focus on the things that we CAN do. I love this!

I’ll be keeping an eye on this week’s campaign. I’m interested to see and hear the stories of people living with diabetes and how they have managed to face challenges.

I hope that this year’s initiative is a positive one for Diabetes UK and we see more of these kinds of campaigns in the future.

Check out the Diabetes UK Diabetes Week campaign here.

And follow the #iCan tag on Twitter.

Difficult discussions

June 6, 2014 in Awareness, Family, Food, Wellbeing | Leave a comment

‘You do eat, don’t you mum?’ My nine year old had wrapped her arms around my waist this morning as I was fastening a clip in her hair. She squeezed tight.

I kissed her head and stepped back. She looked so concerned.

A couple of years ago, a friend of the kidlet’s had developed some disordered eating behaviours. Using age-appropriate explanations, we discussed what this meant for her friend, what we had to do when we were spending time with this friend and what was being done to help her friend ‘feel better.’ More broadly, I briefly explained that some people do have ongoing issues with how they think their body looks and tried to describe how this wasn’t necessarily about the food that they were eating, but had to do with their feelings and how they felt they looked. Trying to give the ‘eating disorders 101’ talk to a then-six-year-old possibly made my head explode with sadness.

This was a difficult conversation to have because I’ve always been concerned about how we discuss food and weight and body image. When I think about it, this was probably the first time that we’d ever had a discussion about food as being anything other than ‘Gee – that’s yum!’

The relationship between food and diabetes is mentioned occasionally – but again, usually because I’m low and need something to help get my BGL up.

As I’ve mentioned before, I’ve lost a bit of weight in recent times. This was not part of a weight-loss strategy. I wasn’t eating differently, or cooking different foods. I am a hobby baker and throughout this time, our bench top housed Tupperware containers full of cakes and cookies and slices. And I talk a lot about Nutella. Food is something that is celebrated in our house. Nothing is forbidden. We just eat a lot of fresh, healthy stuff with a decent splattering of (mostly home-cooked) treats.

We eat out regularly, but never at fast food restaurants. Our local café (a two minute walk away) is an extension of our kitchen; their coffee machine is our coffee machine!

But it seems that even though I’ve not discussed my weight loss with our daughter, she has noticed. Perhaps she hasn’t noticed that I look different, but, when she hugs me, I certainly feel different; when she wraps her arms around my waist, she knows that they go a lot further than they used to.

Should I be concerned at her concern? Does she equate weight loss with there being a problem? Is she worried that I have developed some of the eating problems her little friend had?

I dealt with this morning’s question by reminding her that we eat together at least one meal each day – more on weekends and holidays. I reminded her of the other night when we were toasting marshmallows by the fire as we watched a movie together. I pointed to a recent trip to the country where we ate pizza and shared doughnuts. We talked about the pasta dish I’d made the night before and how we sat at the dinner table eating it.

‘Okay,’ she said. ‘You just feel skinny when I hug you, that’s all.’ And then she changed the subject. I cringed at the word ‘skinny’ just as I would have if she’d used the word ‘fat’.

But perhaps I was making too much of it. Perhaps she was just stating a fact. Maybe using the word skinny was just an adjective that seemed appropriate, just as fat would have been in a different case. Maybe there was no judgement call attached. Maybe. Or maybe not.

The right tool

June 4, 2014 in Pumps, Real life, technology | 3 comments

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?

A lot of diabetes

June 3, 2014 in Awareness, Diabetes, Family, Real life | 3 comments

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:

Diabetes in the club

June 2, 2014 in Diabetes, Real life | 3 comments

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.

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.