Diabetogenic

Three wishes

March 10, 2013 in Awareness, Diabetes | 2 comments

Recently, I bought my husband a book called Three Wishes – An Intimate Look at Jazz Greats. I was in a local book and music shop looking for a copy of a documentary about the Baroness Pannonica de Koenigswarter who was a fascinating woman. She was a jazz patron and writer who moved to New York in the 1950s. Unfortunately, the DVD wasn’t in stock, but the bookseller suggested this book instead. I’m so glad he did.

The book is gorgeous – beautiful, archival photographs of jazz musicians. And each of them was asked the following question by the Baroness (who also took the photos): ‘If you were given three wishes, to be instantly granted, what would they be?’

How delicious! You can only imagine the responses she received from these great men and women of jazz.

I inscribed the book for Aaron with my three wishes and I’m afraid they weren’t anything ground breaking – health, happiness and something about New York. Quite generic, really. A lot of the responses in the book were about the musicians’ musical hopes, wishes and dreams.

So I decided to reframe the question and ask it in a diabetes context: ‘If you were given three wishes regarding diabetes, to be instantly granted, what would they be?’

Would we need three wishes? Surely for just about all of us, the first wish would be ‘cure diabetes’ and then we could be done with it! No more diabetes, and I’d be writing about cupcakes and coffee. And maybe doughnuts to keep things interesting.

But I think there is more. Because surely, if our first wish is a cure, we need to qualify that – it must be for everyone. It must be achievable, available and affordable. And surely, but surely, we should also be asking for a vaccine so that never again does anyone have to live with this condition. `

Today, there is no cure and, even more, there is no cure just around the corner. So maybe, with this in mind, my wishes would be a little more realistic. Perhaps those three wishes would like this:

I wish the technology we have today was available to everyone. I wish every single person who wants access to the latest insulins, devices, treatment options can have it at their fingertips;
I wish every person with diabetes could have access to a team of health professionals who are smart, sensitive, non-judgemental and understand what life with a chronic health condition like diabetes is all about. And that mental health screening was available to everyone – with proper follow-up treatment.
I wish everyone knew about and had access to the DOC and peer support networks.

Again, maybe not ground breaking. But equality of care? I think that is certainly something worth wishing, hoping, praying, dreaming about.

I put the first question to Thelonious Monk….

“If you were given three wishes, to be instantly granted, what would they be?”

He was pacing back and forth, and he paused for a moment to gaze out across the river at the New York skyline. Then he gave his answer.

To be successful musically

To have a happy family

To have a crazy friend like you

And I said, ‘But Thelonious! You have those already!”

He just smiled and began pacing again.

Three Wishes: An Intimate Look at Jazz Greats

What are your three wishes when it comes to diabetes?

Sleepless in Melbourne

March 7, 2013 in Diabetes | 2 comments

I’m feeling rather drained today after a restless night of little sleep. For once, the reason is not diabetes. Rather, it’s my poor husband and his neck/back/shoulder. He’s been in a world of pain for a couple of weeks now thanks to a middle-of-the night visit from Miss 8-year-old who woke after a nightmare and wanted to cuddle and feel safe. She crawled into our bed without either of us realising and situated herself comfortably right between us – we’re sure in one of these positions. This resulted in me sleeping with one foot on the floor and poor Aaron being scrunched up in a corner. He woke in pain and it’s been getting worse ever since.

She quite often runs into our bedroom in the mornings when Aaron has gotten up to go to the gym or to jump in the shower, and dozes, cuddling up next to me until it’s time for us to get up and face the day. Or on weekends when we’re enjoying a sleep in, she might jump on the bed, promise to be quiet and then wriggle, whisper (LOUDLY) and be very, very rowdy peaceful until we give in and get up.

But this night was different – she was in there for a good part of the night and the result was not a fun morning of cuddles and tickles. Instead, Aaron has been dealing with this horrid pain.

Last night, for the first time, the pain actually woke him from his sleep. And at 4am, his tossing and turning as he tried to find a position that didn’t cause excruciating pain woke me. We got up to find some pain-killers and then I located a heat pad and warmed it up for him to see if it would help with the pain. It didn’t. Neither of us got back to sleep. So today, tiredness is reigning supreme!

I can’t remember the number of times I’ve woken Aaron up in the middle of the night, asking him to grab me some juice or jelly beans to treat a low BGL. Or the times when for some reason (looking at you, dislodged pump lines) my BGL is sky-high and has woken me and we’ve lain there together as I will the nausea to bugger off.

I can’t remember the number of times my CGM alarm has woken him, but not me. Or the number of times a pump alarm has sounded demanding a cartridge to be re-filled or a battery replaced. (Yes; yes I know I should pay more attention to the low battery/cartridge warnings!)

In my experience it’s the night-time diabetes things that impact more on Aaron than the day-time things. Even when I don’t need his help, I do turn lights on, drop things, walk into walls etc. as I stumble from my sleep to deal with the errant low.

So there is absolutely no complaining from me as we get through our day today. Because for once, I was helping him out in the middle of the night. It’s kinda nice to be able to give back even if it was only one night.

Deceptive

March 4, 2013 in Awareness, Diabetes, HbA1c, Real life | 2 comments

I’ve lost a bit of weight over the last three or four months. Not intentionally, just because stuff has been happening and I forgot to eat. The truth is a lot more boring and not relevant to this blog at all, but the easiest way to explain it is that November last year was crazy-busy, stressful and little food was consumed. Whatever.

Apparently, it’s okay to comment on people when they’ve lost weight. And with it comes a lot of praise – as if it’s something of which I should be proud. But I know that the tough few months I’ve had is the reason I look this way, so when I stand in front of the mirror, I don’t see someone who looks good in what she’s wearing, I see someone who is looking tired and a little defeated.

It is another example of just looking at what is in front of us and not trying to work out what is going on behind the scenes.

My HbA1c is sitting in the low 7s at the moment which of course, would have every health professional alive patting me on the head and calling me a ‘good diabetic’. Well, thank you. But the reason for it is a combination of erratic highs and lows, and not eating much which does wonders for keeping a steady line on the CGM.

The truth behind results – whatever those results – can be more than a little deceptive. And being the person I am, I want people to know the truth. Well sort of. I want people to know that I haven’t been trying to lose weight out of vanity. It metaphorically has fallen off me because I’ve been stressed and busy and barely eating. So the numbers on the scales (if I bothered to weigh myself) wouldn’t be a reflection of effort at all. Equally, my A1c isn’t because of hard work; it’s because the limited food has helped, and the highs and lows have averaged out. I’d feel like a fraud if anyone thought anything else.

It’s all too easy to take what we see at face value and assume that what we see is what is real. But the two are completely different things. I’m never sure how much I should pry into what is really going on in others’ lives and I certainly don’t want a million questions thrown at me. Is a ‘you look good’ comment all that’s warranted when discussing weight loss? And should an in-target HbA1c be taken as an absolute that needs no further investigation? Honestly, I don’t think so.

The devil is in the detail, I guess. But making assumptions and not delving deeper will never get the truth. It will only tell half the story.

Walkies

March 1, 2013 in Diabetes, Exercise | 4 comments

At the beginning of this year I started to exercise. (Pause for collective gasp/fits of laughter.) It was kind of an accident. One evening, I decided that I’d like to go for a walk around Princes Park, close to where I live. It’s about 3.4km, so a relatively easy stroll.

Then, the next day, I did again. And again the following day. And it’s become pretty much a regular part of my day.

I don’t know how this happened and to be honest, I don’t really enjoy it. But when I don’t do it, I miss it. ‘Isn’t it great?’ well meaning, but probably stupid exercise types ask me. ‘The endorphins are amazing, aren’t they?’ say others. I have no idea what an endorphin is and I’m pretty sure it’s a made up word, so I generally answer in the negative.

Do I feel better? Not really. Do I look better? Well, I’ve lost a bit of weight, but that is more due to stress and minimal eating than exercise. Do I look forward to it? Absolutely not.

Here’s what I do like about it – I’m outside, there are trees and I often go with a friend so we chat for the 30 minutes it takes to do a circuit. And coo at the cute dogs being taken for their evening stroll. And check out the buff footy players training at the park. Really, it’s quite positive.

I have no idea how long this will last. I suspect that colder weather; earlier sunsets and well…my overall aversion to physical activity will result in this being a short-lived fad. But at least my blue runners have had a decent amount of wear.

I will never be an exercise freak, but I have always liked a walk. I drive my family nuts when we are away on holidays because for me, the thought of walking 8 kilometres in a city is a perfectly sensible thing to do. We’ll stop on the way to shop or have coffee, lunch, cupcakes, coffee, doughnuts, cupcakes etc, so really, we’re just walking from one food stop to the next! But to schedule it in with the main purpose being ‘exercise’ as opposed to ‘getting from point A to point C(upcake) is a little alien.

But, I’ve been doing it for a couple of months now. And even though I don’t feel better for doing it, I like the idea that I’m doing it. I get to be supercilious and judgemental at people who don’t do any form of exercise. And I tell myself that it’s good for my health. I’m hoping that I do manage to keep it up for a while, but I’m also realistic. The evening walks around the park are all I’m going for. There are no plans to run a cheeky half-marathon by the end of the year. Yes, I have known for a long time that a place on any sort of sporting Australian team is out of the question for me. Or at least until air hockey becomes an Olympic Sport. Then I’m in with a chance!

Wordless Wednesday – So, I’m a……

February 27, 2013 in Uncategorized | Leave a comment

Circa 1955.
I guess ‘So, I’m a PWD’ isn’t as catchy?

Dexcom and me

February 26, 2013 in Devices, Diabetes | 8 comments

The Dexcom G4 attached sitting pretty on my abdomen.

So, I’ve been trialling the Dexcom G4 CGM using an integrated Animas Vibe pump. This is week 7 of the trial and I am gutted that I only have one sensor left before I have to hand it all back.

To say that I love this CGM is an understatement. Actually, let me back up a minute. I love CGM full stop. Since being introduced into Australia about five or six years ago, I’ve used CGM sporadically. And there have been periods where I’ve used it full time. I love this technology for the information it provides me and the way it helps me fine-tune my diabetes management. It makes me feel safer about living with a condition that takes great delight in throwing a curve ball. Frequently. (Actually, I have no idea what a curve ball is. Sporting analogies and me = pffft. But I digress….)

But this CGM has blown me away. I’d heard great things about the Dexcom/Animas integrated system when I was in Berlin at the Euro Bloggers Summit at EASD last year. I hadn’t seen the system in real life, so it was great to hear from real people about everyday real living with it. Really. Overwhelmingly, they loved it.

Knowing that it was on its way to Australia, I couldn’t wait to see it in action for myself, so I was thrilled when I was asked to trial it for a couple of months.

Here’s the good stuff:

The accuracy is incredible. This is, of course, the biggest criticism of CGM. The lag time drives people nuts. We all know that it’s not about the actual number, it’s about trends. I get that. But to have a CGM with less lag time means that what we’re seeing is far closer to what is actually going on. The biggest difference I’ve had between the Dexcom and my meter has been 2.5mmol/l. That, my dear friends, is bloody impressive!
I can calibrate it at any time, no matter what my BGL is doing. Heading up, up, up or plummeting? Doesn’t matter – calibrate and away I go!
The alarms are sensible. I adore the ‘BGL dropping too fast’ alarm which has allowed me to catch more hypos that I can count. Love it, love it, love it!
Did I mention the accuracy?
The colour screen on the pump (or receiver if that’s what you are using) is brilliant. Honestly, I thought this was a bit of a gimmick until I actually realised how much easier it is to read the screen in low light, bright light, at the movies, when I wake up in the middle of the night and can barely register anything etc.
The sensors are meant to be used for 7 days. I got thirteen days out of the first one – which fell out because I didn’t use anything to reinforce the tape; 17 days out of the second and third died today on day 20.
And, oh, I know, the accuracy.

What don’t I like? Well, not much. I’m not overly keen on the inserter for the sensor. It looks like a giant syringe and the automatic spring-loaded bit doesn’t kick in until the needle has already made contact with the skin. I have absolutely no needle phobia whatsoever, but I wish I’d been told to push the plunger hard so as not to feel the tip of the inserter needle hit my skin before the automatic part does its thing.

The tape definitely needs reinforcing if you’re planning on getting more than 7 days out of each sensor. But, a quick Facebook post out to the DOC and I was using Opsite to secure the little thing to me. No problems, now. (Although, I was going to consider toupee glue as an option thanks to this blog from the clever and funny Scott Johnson.)

The cost. More on that in a minute.

The alarms don’t wake me up. And they don’t wake my husband up either. I have the pump on vibrate during the day, but at night turn on the sounds. Unfortunately, even when turned up as loud as possible, I still sleep through (a couple of mornings of three plus hours of 3.5mmol/l can attest to that).

I have a decision to make – my pump is out of warranty and it’s time for me to upgrade. I’ve been pumping for 12 years now and have tried every pump on the market (whether as a trial or as my own). The only feature that I insist on is that the pump must have CGM integration as an option, which obviously narrows the choice down to two pumps.

The main negative with the Dexcom is the cost. According to AMSL (distributors of Dexcom and Animas) the introductory cost of the transmitter is $595 and a box of four sensors is $396. However, a fifth sensor is thrown in. Prices rise by about 10% after the introductory offer ends on 1 April 2013 at which time, a box of 4 sensors (plus bonus one) will be $440 – $88 per sensor. Even if I manage to stretch out each sensor to two weeks, it’s still expensive – more expensive than its competitor.

My worry is that Dexcom is going to be priced out of the market. I know that the sensors are absolutely not this expensive overseas, so it is disappointing that the Australian consumer is getting slugged such a premium price. I understand that we’re a long way away and I also understand that there are distribution costs. But I still think that the cost we’re being charged is exorbitant and, frankly, that pisses me off.

But the accuracy really has blown me away. And made me realise that when it comes to diabetes management tools that this is, without a doubt, the most important consideration. I have one sensor to go before the trial is up and in that time will decide whether I can budget for the extra costs of this system. In my mind, it is worth it. I just need to decide if I can do with a couple of fewer pairs of boots this year to fund it.

Disclaimer

I have been on a trial sponsored by AMSL, distributors of Animas insulin pumps and Dexcom CGM in Australia. As part of the trial, I have had use of an Animas Vibe pump and a Dexcom G4 transmitter. I was also supplied with 4 sensors for the Dexcom and a limited number of consumables for the pump. I have no arrangement with AMSL to write about my experiences on the trial or review the devices. I’m just doing it because I’m happy to share my experiences of this new device on the Aussie market. Feel free to ask questions and I’ll answer them if I can. For information about this product, contact AMSL on 1300 851 056.

Aussie bloggers in the spotlight

February 13, 2013 in Uncategorized | 5 comments

It’s always great when the diabetes online community gets a shout out in the media. So I was delighted to see this edition of Diabetic Living magazine which has a five-page spread on Australian bloggers and social media folk.

This article follows the hugely successful inaugural Australian Diabetes Social Media Summit held in Melbourne on WDD last November. Diabetes Living sent along a staff member and it was terrific that the magazine decided to write about some of the attendees.

So, get yourself down to your local newsagent, buy a copy and have a read about some amazing folk like Matt Cameron (and then read his blog!), Ashley Ng (and read hers too!) and Brent Salzmann (who you should then follow on Twitter). I’m pretty honoured to have been profiled among this incredible and dynamic bunch.

And if you’ve been thinking that you’d like to give this blogging caper a go, or get on Twitter, there are some useful tips to get you started.

I have type 1 diabetes and I am your worst nightmare…..

February 5, 2013 in Uncategorized | 6 comments

Over the next couple of days, I am spending some time at the University of Melbourne talking with first year medicine students. It is their first week enrolled in this course and during this time, their focus is strongly patient perspectives.

One activity involves listening to a panel of people living with various chronic health conditions. We’re the ones they prepared earlier. And we’re the ones that are going to be an absolute nightmare for them when they finally become grown-up doctors. Why? Well, we’re selected because we are, what some cynically refer to, as professional patients. It’s a badge I’m willing to wear with pride, because knowing about my health condition doesn’t make me a pain in the arse. It makes me empowered.

As preparation for these sessions, we’re asked to think about stories of the good and bad experiences we’ve had with health professionals. We talk about what good communication looks and sounds like and really focus on the health professionals we love dealing with and why. I’m lucky, because I have mostly good stories to tell. I don’t like doctor (or nurse) bashing, so being able to praise the good ones is terrific!

There is no such thing as a poster child for a health condition, so I am always very clear when talking about my experiences with diabetes that I state (several hundred times) that I speak for me and me alone; for my diabetes and my diabetes alone. But even with that caveat, sharing my story provides these students with an inkling of what daily life with diabetes and our interactions with our health professionals is all about.

Sessions like these are really important because they get to hear about living with a chronic condition, but not in a clinic setting where there is noise, people interrupting and one eye constantly on the clock knowing that there are a herd more people outside to get through. They get to ask questions about how we felt about certain situations and why communicating effectively and listening attentively is important. And they get to see us as people, not as a health condition.

This is the third or fourth year I have done this. I feel privileged to be able to tell my story and I hope that at some point in their doctoring lives, the stories shared by the members of the panel will resonate. That as they walk in to see their 25th patient for the day, they remember to breathe, and ask questions that allow the patient to share important information. And that they listen.

When it comes to health care the patient perspective is the most important. How we interpret our appointments and the information we’re given, what we do afterwards and how we feel about living with our condition reflects how we manage our condition. I really applaud the University of Melbourne for including this program in the first week of studies for the med students. Now if only they could find time in the frantic timetable to do it each and every year of their studies.

January 31, 2013 in Uncategorized | 1 comment

Regrets: I’ve had a few

January 30, 2013 in Awareness, Diabetes, Real life | 2 comments

A self-awareness exercise I came across recently had me facing some interesting facts. The idea is to list things that you regret having done or not having done and then seeing how you could address each regret. And also, to think about why you did or didn’t do the thing you regret doing. Or not doing. (Okay, those last sentences made way more sense in my head that it does on paper, but hopefully you get the idea.)

The regrets have to be things over which you have some control. So saying ‘I regret I’m not taller’ doesn’t count. Unless you deliberately made yourself shorter by sleeping in a shoebox. Or something.

So, I sat down, got honest and wrote down the things that I do regret and here are some of them:

I regret not having lived overseas
I regret giving up playing the flute completely
I regret not having another child
I regret not buying those red shoes I saw at Bloomingdales the first time I went to New York City
I regret waiting until I was 36 before visiting New York City for the first time
I regret getting a perm when I was in secondary school. What was I thinking?
I regret the times I ignored my instincts – they were always, but always spot on!
I regret not being able to speak Italian. (But I will continue to say that all it would take is six months in Venice for me turn my high-school skills into fluent Italian. And I have the hand movements down perfectly!)
I regret not telling my family that I love them more
I regret wearing white jeans. Ever
I regret not having seen Frank Sinatra sing live
I regret spending my teens, twenties and now thinking I was (am) fat and trying to hide my body when it is perfectly fine

You get the idea. I then tried to do the same exercise, but based on how I feel about my diabetes. Did I have any real regrets? My list looks like this:

I regret waiting three years before starting on a pump
I regret not finding my endo from the beginning of my diagnosis
I regret any and all of the guilt and shame I have felt about having diabetes
I regret not speaking with someone about diabetes sooner and understanding that it’s okay to grieve
I regret feeling the need to be stoic all the time and understand that sometimes it’s okay to say ‘this really sucks’.

I actually am quite proud of my diabetes list of regrets. So much of diabetes is out of our control. Whether we’re talking about our diagnosis or complications which we may or may not develop – sometimes despite our best (and worst) efforts – we sometimes still get dealt something that we hoped would not happen.

I guess for me, I don’t want to look back and say ‘I regret not having seen my ophthalmologist frequently’ or ‘I regret not having my kidney check done each year’, because if something happens, I don’t want to think that I could have prevented it.

Let me be clear. This is not a blame game. I know people who could make a list that would have no regrets at all because never did they miss a screening check, never did they see an HbA1c result above 7.0% and still have developed complications. I just want to be able to say I did everything I could to help. It’s as much control I can claim over this condition. A condition that really doesn’t understand what control is.

So, what are your diabetes regrets?