Search This Blog

Thursday, 29 December 2016


There's little about the world around you that you pay attention to when your blood sugar is low. A public space can diseappear quickly. People milling about, fast movements, babies crying, gossip amongst friends, or a fantastically coloured dress all cease to exist when you're in the realm of your low. You don't have the concentration to see separate objects, and noise mutes and dulls.

I was low today (thanks, Summer) at my local shopping centre. My foggy brain managed to distinguish an empty table that I could sit at and quietly drink my juice. It was a knockout low. I was glad for the table because breathing was difficult and my legs had gone past jelly stage and seemed to made of vapour; I couldn't imagine how they would support me at all.

As I sat and sculled my juice, a lady in her early 60's motioned to the other chair on my table. I had no idea what she wanted but I just nodded anyway. I didn't care, so long as I could drink my juice. She sat down next to me, plonking her bag heavily onto the floor beside her feet, A plastic cup in front of her. I could smell the coke in the cup, fizzing away.

Minutes passed in silence. I recovered from my hypo. I re-entered the world and began to pay attention to the lady who was had sat down opposite me. Her shoulder-length, slightly greying blonde hair was mussed. Her eyes were tired, and lips were tight as she rubbed them against each other. She was hunched over, and paying no attention to my stares.

In a beautiful moment I understood, as her hands rubbed over her face and she made a soft little groan of discomfort. I had been there with her, moments before, in that closed-off space. She sipped her cup of coke in the same way I drink soft drink when I'm low. When you need to swallow quickly, but the bubbles get up your nose, and the experience is unpleasant. The pursed lips and look of disgust written on a crinkled nose and squinting eyes as you force liquid you don't want into your body.

I stayed and waited. Her back straightened out and her hands ceased their repetitive rubbing of her face to rise up and smooth her hair down. Her eyes opened up, brighter and her the tension had left her cheeks. In silence, I checked my blood sugar. She didn't flinch at the blood that welled up from my finger tip. She offered a smile instead, and asked if I was feeling alright. I nodded and asked her the same. We gathered our things and left in opposite directions.

The whole drive home, I couldn't stop thinking about what a beautiful, surreal encounter it had been. The chance we had had to share that lonely, dark space that a hypo occupies and to feel understood.

Thursday, 8 September 2016

Drink. Eat. Drink. Eat.

I am hollow. Vaguely aware that I have a shell of skin and hair molded into human form. Not strong enough to hold whats supposed to be inside.If there is anything inside; but I can't feel it. I don't feel like my skin is my own. There is nothing to feel when I scratch my nails across my face, trying to stimulate a sense. My chest is empty, even as my heart feels like it's beating too fast, and my lungs are too heavy. I watch my fingers wring together but I am disconnected from any feeling. When I clumsily bang my leg against a table, or a wall, I do not register it, even if I scrape the skin off and bleed. My body doesn't know that its happened. I am numb, in every sense.

In this state, I am not a person anymore. Who I am has left me. What I am has left me.

There's a monster in my body. Controlling me. It's only goal is to feed. The monster gets angry when it's interrupted. I get angry for the monster. I am not me anymore. I am a vessel for the monster, and my body is not my own.

I am simply a pipe connecting my mouth to something that's supposed to be in my stomach. That is all I focus on. How to get liquid down that pipe. I know it must go in my mouth first, but I'm not aware of how this happens.  The air is thick and stale and the liquid I swallow on impulse is tasteless in my mouth. There is a vague and far-off sensation that food is in my mouth, that I am chewing, but it doesn't matter what. That is not the point. The point is to get it down. Drink. Eat. Drink. Eat.

My eyes are unseeing. I stare ahead without taking my surroundings in. I am not sure if they even exist. Everything is flat, and I believe that the landscape around me has been hastily painted on. The doorways are uneven and faces are blurry. I don't always manage to touch the things I am reaching for. I can see darkness in the corners of my vision and I think it is growing. Creeping closer. Maybe this is where the monster lives.

My body doesn't do as its told. I want to run away from this place. The monster in me keeps me captive, it skews my legs and makes my head swim if I try to lumbar away from the path it wants me to take. Even on the path it chooses I still sway, and trip as I feel my way towards what it wants. Drink. Eat. Drink. Eat.

There is cotton in my ears. Words are said but they don't make sense and they aren't important. Too many voices confuse me in this strange place. There is only room enough in my head for one voice. Snarling. Drink. Eat. Drink. Eat.

I can feel the monster in my skin as I feed it. It is stretching through my limbs, pushing against my bones and muscles. Sinews that I had forgotten I had, but feel heavy now as they strain tight beneath my skin, stretched by the monster who is growing. I ache, but I am feeling.

I am feeling and I am fighting back. Sound is exploding into my head as I rip the cotton from my ears. Light is over-bright as I fight my way through the dark and focus my vision. My chest is burning now from the effort of this battle of wills. My breathing is laboured, and I suck fresh air greedily as I fight to determine who will control me. My skin tingles and sweat prickles over my arms as I force the beast from out of body.

I win eventually. It takes me a while to recover. I feel nauseous. My body wants to rid itself of the food the monster fed into it. Every inch of me is tired. My toes are even tired.

I delight in wiggling them, knowing that they are mine. I am human.


Reasons Why I'm Hypo:

This is hypo.

Wednesday, 24 August 2016

Endoscopic Review

There are some rare perks to having Type 1 Diabetes. Being first-in-line for a medical procedure is one of them.

I recently had an endoscopy to check for coeliacs disease and when I first called up to book I was offered a mid-morning appointment. It wouldn't have suited my diabetes at all. I casually dropped the magic 'D' word into my next sentence and I could almost hear the scramble on the other side of the phone to come up with a better time. Within 10 seconds I had been bumped up in priority to the much coveted procedure prime-time at 6.40am.

In the weeks prior to my endoscopy I did all the necessary, glutening myself up and setting appointments with my educator and endo for proper management during the procedure. The nurse at the endoscopy clinic became my new best phone buddy, working through the procedure with me beforehand to make sure that they had a handle on my Type 1 and my insulin pump.

After 4 frustrating weeks of glutening myself, dealing with the pain that came after eating and the resulting hypos, I was cheering when the morning finally rolled around.

My husband dropped me off on his way to work and sat with me until it was time for the procedure. Despite being nervous I was doing well. It made it a lot easier knowing that I was first in and wouldn't have to wait for anything.

Shortly after arrival I was called in to an assessment area where I met the doctor performing the endoscopy and went through a medical check, where they tested BP, my BGL, weight and height, and the details of the last food and drink I had had. To get an endoscopy you fast for 6 or so hours prior, so having the first appointment of the day was really helpful. I had accidentally consumed 4 jellybeans at 3am when I woke up a little low, but they were fine with this. I was asked if I had any questions and the only thing I really cared about was that I would be put out to it as I had read that some people were awake during these procedures. I was assured that because I had ticked the anxiety box on my pre-admission forms that I wouldn't be aware of anything happening to me.

After the assessment I was led through to the op area and set up in a bed where a nurse attached a BP monitor, pulse oximeter and inserted a cannula into the inside of my elbow. I met the anesthetist who once again reassured me I would be out to it. The anesthetist was the one who was in charge of my diabetes during the op, so I took him through the management plan my educator had set up with me. I checked my blood sugar, which was on 12 and rising (which it does every morning until I eat breakfast) so I kept my basal rate on my pump as per normal. I showed the anesthetist where my pump canula was inserted on my hip and the CGM in my arm and taught him that to check my blood sugar he could simply press the middle button and my CGM reading would show up on the pump screen. He was happy to let me self-manage as it was such a short (20 mins max) procedure.

It was as I was explaining the CGM that a second nurse entered stage right to remark on my insulin pump.

"An insulin pump?" She remarked, "What do you need that for?" I thought the answer was pretty obvious but replied that it was to help manage my Type 1 Diabetes as an alternative to injections.
"Ohhhh, so you must have really bad diabetes then if you need that, hey. And you're so young."
The last thing I needed as I was getting ready for a procedure was aggravation like this. I bit my tongue and explained that the pump was just another means of insulin delivery, similar to needles but with less injections and more freedom. She turned her nose up and sniffed that she "would prefer injections, if you ask me, because no-one can see that you have diabetes that way."

I went to reply, but I think the anesthetist either noticed my BP rising or the daggers I was shooting this nurse, because before I could reply he had motioned the other nurse to place a round tube into my mouth and announced that he was going to be putting me out right now.

40 minutes later I was hazily opening my eyes in recovery, feeling lovely and relaxed, wondering how I could get my hands on some anesthesia for home use and trying to avoid the nurse seeing that I was awake so I could just lie there a little while longer. She did eventually notice that I was lying there with one eye crooked open and bustled over to see how I was doing. She checked my BG (which I could already see had remained stable on my CGM) and got me up to have a breakfast of ham sandwiches.

20 minutes later I was being released into my mums care with instructions that I should receive the biopsy results in a few weeks' time.

The procedure was a lot easier than I thought it would be and I was surprised at how well my BGL held steady without any temp basals. The staff were all lovely & professional (minus that one nurse) and the only thing I wish I had been told about before was that its quite common to have sternum pain for up to a week after the endoscopy.

Monday, 18 July 2016

Both Feet on the Ground

This year Diabetes Australia focused on the 4,400 diabetes-related amputations per year, 85% of which are preventable. The campaign was received with mixed results, most likely because it did address an issue that people don't like to think of in relation to themselves or their clients.

I don't think I'm alone in wanting to ignore the more serious side to diabetes - the side where you may develop complications despite your best efforts to train your diabetes to sit and stay on command. I will readily admit that when I first saw that the key messaging was regarding amputations, my instinct to protect my vulnerable diabetes psyche was to ignore diabetes social media for the week. Which I somewhat did. I didn't want those images. Fear of complications is very real, among all people with diabetes, and each person deals with those fears differently. I deal with my fear by trying to maintain good blood glucose control and follow the annual cycle of care to prevent complications.

The problem is, I have to think about complications more than I feel comfortable with, because I follow the annual cycle of care. The current medical system in Australia favors those in the know about their health, and for those with little time or education on how to access various services, it is easy for them to get left behind in their diabetes management and complication prevention. The current onus when it comes to preventative care and measures is on the patient. The patient has to ask to see the podiatrist, they have to remember to see the optometrist, the patients schedules an appointment with the nurse for an updated chronic disease care plan. I don't always remember to include the podiatrist in my ever-rotating list of doctors and I rely on my yearly drivers medical as a reminder to see the optometrist, as just two examples. That's a lot of work that I have to do. A lot of appointments that might fall through the cracks. And a lot of know-how to get the system to work for me.

So I for one am welcoming this years National Diabetes Week messaging around preventable amputations. The campaign worked both to educate health professionals to pursue the annual cycle of care, including regular podiatry checks, and also to educate patients on understanding what sort of checks they should be getting, and when to seek help so that they don't end up with an unnecessary amputation. The messaging this year is as much about starting these conversations with your health professionals so that they can help you to tick off all the boxes relating to complications screening as it is asking you to be aware of your own body. In doing this, it alleviates some of the burdens for me, as a patient.

I have worked so closely with my GP and the practice nurse in regards to my diabetes-related care that they are starting to look through my records without prompting. At appointments they ask to make sure all my checks are up to date - and if they aren't, they then look for someone suitable and schedule an appointment for me so all I have to do is show up and everything else gets looked into. But this was a process, for both of us. I used to have to be the one to follow up and ask, and keep tabs on my out-of-date check ups.

Some of the complaints listed against the amputations campaign this year were in regards to diabetes-related distress linked to fear of amputations and other complications. People are generally afraid of the unknown and amputations and our future with diabetes is often unknown. So what if we try to make the future known? What if we provide patients and doctors alike with the knowledge of what to do in the early stages of the disease, or the early stages of an infection, on what to do to prevent this from ever happening. How much less distressed will people be, knowing that there are things they can do, and do now, to prevent the majority of amputations.

There were complaints that the messaging this year wasn't 'positive enough' and that National Diabetes week should only consistent of 'Girl-Power' style awareness where we show the public that we all have 'D-Power'. I think we're already doing this well enough though. For every diabetic who has ever pushed through a day high, low, yoyoing between both and tired AF, they're showing that we have the D-Power. We've got sportsmen and sportswomen, TV presenters, singers, a prime minister and just everyday people who all show that we with diabetes, we can do anything that we set our mind to. I don't worry about the public perception in regards to this but public perception does need to change where complications are concerned. It's no wonder we get stupid remarks, if we are too afraid to address the issue ourselves.

Why don't we turn a negative complication into a positive message? That won't hurt anyone. Not raising awareness about the risk of amputations and what can be done to prevent them for people who live with diabetes, and their health professionals - that will hurt someone. They might even lose a leg over it.

Friday, 15 July 2016

Pulp Fiction

I added an item to our staff meeting agenda at work the other day, and it had absolutely nothing to do with my job. It was a bit of a selfish agenda item.

At the end of the meeting, when all the staff attending by conference call had logged off, I called attention to my diabetes. Everyone at work knows I have it, my diabetes is not something that I hide. Some understand my diabetes fairly well, some the basics and some I am still working on educating.

I fielded an errant comment only a week ago during a staff birthday morning tea that I wouldn't be able to eat cake next week (now this week) because it would be National Diabetes Week. I am not sure how it being National Diabetes Week prevents me from putting cake in my mouth, but I'm beginning to think the commenter was on to something, because I am super high right now from the cake I did eat today at morning tea. We have lots of cake here. And I have a lot of salads that I don't want for dinner as a result.

Hands Free Hypo.
Conversations continued later that day when I was walking around with a juice box tucked under my chin treating a hypo. I don't usually allow people to see me treating a hypo because I tend to get cranky and I just want to be alone. This was one of those rare times when I allowed other people near me. Naturally, questions were directed to me about hypos, how to treat them, and then if they should/could do anything and if so, when. I went through the usual explanation and ended with instructions that if myself or the other diabetic at work were unconscious, that we should be given Glucagon, and how to give it.

"Like in Pulp Fiction?" someone said, and mimed stabbing a needle into their chest.

Almost, but with a little less 'aggressively stabbing needle to the heart' and more careful insertion into a large muscle

The next day I added a Glucagon demonstration to the staff meeting agenda, which is how, in the middle of National Diabetes Week, I came to be holding a diabetes special of 'Show and Tell' at our staff meeting. Complete with demonstration from a dead (expired) kit I had been hoarding at home.

Reasons Why I'm Hypo: I rage bolused to get rid of the stubborn post-cake high. Rage bolused kicked in hard.

Thursday, 7 July 2016

NDS-What? (Part Two)

My pump site was due for a change on Monday morning. I went about gathering the necessary items for my set change: Canula set, reservoir, alcohol swab, insulin. Except when I scavenged for insulin in my fridge I found a single vial rolling around at the back of my fridge. Essentially I only had 6 more days of life stored. With half of that vial going into my pump during the set change, it was 3 days of life left in back-up. I obviously made getting new insulin a priority, and scheduled an appointment with my GP to get a new script (I didn't have one already). When I did another set change today, it meant that I had absolutely no insulin left as a back-up. Feeling a little bit panicked (Ok, I was more than mildly freaking out) by my lack of organisation, I headed off to my local chemist as soon as I had the script crumpled into my hand, and luckily they had some NovoRapid in stock (Usually they have to order it so I was lucky!).

While I was there, I thought I should place an order for my brand of test strips, as its not a common type and I have yet to see it stocked on shelf anywhere. I had actually been organised with this, and had made a specific trip to my chemist back when the NDSS changes were first announced. They assured me they would read up on it and prepare, and I gave them the product codes for the pump consumables and test strips I usually used.

I requested my test strips, and was told that I was the first person to have asked for a special order under these changes. I expected as much. What I didn't expect was to be told it would be 2 weeks....2 whole weeks....before they thought they could expect a delivery, as they had not yet 'figured out the system'. Luckily I am not as disorganised with test strips as I am with insulin...I have one and a half boxes of strips left, about 3 weeks worth of supplies.

The '2 weeks' statement left me a bit in shock. As far as I had been able to read, there was supposed to be a 24 to 48 hour turnaround on NDSS supplies with this new change. 2 weeks is well, well over what I consider acceptable. I was pissed off at the move from Diabetes Australia as NDSS providers to chemists as sole providers by the federal government. It's scary having to rely on small metal strips to control a disease. Its scary when you are told there's essentially a 2 week wait to get access to these things that help to control your disease. Its scary when that control is ripped from you by a government who will gladly sacrifice your health to save a buck or 2. Its scary when the issues you were worried about with the provider change, turn out to be something that you actually need to worry about instead of just being crazy what-ifs. When the worst case scenario, that you can no longer easily access the tools you need to survive, becomes your scenario.

I left, being told to call back in 2 weeks time, when they 'hoped' that the strips would be in. As I was gathering my things to leave, the pharmacist made the comment, "I've ordered you one box, that's it right?". No, not if there's a 2 week wait on supplies everytime, its not. I changed my order to several boxes, and will see how many I can get away with. No matter how this pans out, I don't trust the new system, Not with my life, So I'll continue to stock like the apocalypse is right on my doorstep, and will make sure I never put myself in a situation where I have less than 3 months supplies at any given time.

 It's just another added layer of thought I have to add my diabetes management now.

Thursday, 23 June 2016

King meets King

If you've read a few of my recent posts you will know that CGM funding, and especially the extension to adults, is obviously something I am quite passionate about. As far as I am concerned, just because I can no longer walk around in frilly pink dresses without getting sidelong glances, doesn't mean that I don't deserve the same equal access to healthcare as the cute 5 year old with pig-tails.

I was very excited to be given the chance to talk with Shadow Health Minister Catherine King and ALP Candidate for my electorate of Bonner, Laura Fraser Hardy, about the recent CGM funding announcement.

Along with 2 families with Type 1 Children, we were given the opportunity to chat about what the election funding commitment could mean for us, and the positive impact that new technology can have on our lives.

Before I met them, I was quite nervous to be talking to Catherine and Laura. I felt like there was a lot of pressure (that I put on myself) to make sure that they really knew what it meant to be having this conversation about CGM. What is an election pledge for them, is potentially someone with Type 1 Diabetes' life. Potentially my life.

I don't know what I was worried about. Catherine and Laura were very involved in the conversation and I felt that they were really trying to understand what it means to live with Type 1 Diabetes. They were both friendly, attentive and inquisitive about not just CGM, but about pumps, injections, blood glucose testing and diabetes in general. I use CGM full-time, so I was able to pull King out for a bit of show and tell, including letting Catherine & Laura see the pros of CGM with a 'Suspend Before Low' (that I never had to treat for) captured on my graph before lunch (bonus points to me, I was having a nice smooth day with a graph of 7 and below for the previous 15 or so hours).

Introducing King to Laura & Catherine
I got to do what I wanted and had a conversation with Catherine about the inclusion of funding for adults. Obviously I would still like to see the funding extended to adults with no requirements, as with the funding for children. This is a problem across the board for diabetes technology though, including insulin pumps, where adults have to jump through hoops to be funded, but children don't (Yes, I did make these comments too). There's always room for growth, but at least that initial proposal is including adults, which opens up a door for further expansion on the programs. I don't doubt that Diabetes Australia and JDRF will continue advocating for access for everyone.

To read more about the ALP's committment to CGM funding, you can read diabetes Australia's statement here.

Friday, 17 June 2016


News came from the ALP on Wednesday, that they had jumped aboard the CGM train, announcing an election pledge of $84 million to improve access to diabetes technology, predominantly a CGM subsidy as well as extra funding for the insulin pump access scheme currently in place.

This was initially relief for my conscience, because I was no longer having to vote against technology that I stand behind as having such a positive impact on my life. I did worry that voting against CGM would make it seem like it was not a needed technology, when I feel strongly that it is needed. 

The announcement was more than just good for my political agenda though. The announcement by ALP included not only children up to 21 years old, but adults over 21 who had severe hypoglycemia or hypo unawareness, as well as pregnant women. 

As far as I have inquired so far, the submissions that were made by Diabetes Australia, JDRF and other relevant groups including ADEA were to include all people with type one diabetes, and never limited their recommendations to children only. To see this recommendation for all Australians living with Type 1 Diabetes being acknowledged makes me happier than I can put into words. After all, my diabetes has never decided to toe the line and model itself as an A-Grade student just because I happen to be above the legal drinking age and know how to do my own taxes.

Everyone should have access to life-saving technology. Adults who have severe hypos and hypo unawareness may live by themselves. I have night-time hypo unawareness, where I do not wake up at all to nypos, and the only way I can see that I have even had one is because I can look at my CGM trace the next day and see where my pump has kicked into action to suspend my blood glucose. With my 640G, it even does one better and suspends before low so I never even reach that low level. At home with my husband, I have someone who can help me, but when I go away for work (which is several times a year) I rely heavily on my CGM. 

So today I am very relieved, that we as adults have had a victory too.

Tuesday, 14 June 2016

Sugar Scars

I flicked onto to ABC3 (yep, a kids channel) the other night to watch a re-run of the season final of Tomorrow When the War Began. I grumbled at the T.V. as the plot deviated further from my beloved books (which I definitely have to read again). I don't like it when things are different from what I know.

'Tomorrow' is one of those series I can read again and again, and imagine differently every time. I loved the movie and 6 years on I'm still more than mildly pissed off that they never made the sequels.  So the TV series starts off, and its so different to the books. Fi couldn't be less of a pretty proper lady and more of a tomboy if she tried. No. And what is with that Robin liking Lee crap? Just Nooooooooooo. The random invading army who seem to be asian/australian/kiwi/I think I saw a few Indians. Where are they even from? All of it is no. Sadly though, this fail of a TV series may be the only way I will see the series completed.

I digress.

I think the point I was going to make before I went off on my ranting tangent was that I really love the survivalist idea behind 'Tomorrow'. How ordinary people would react to situations where all their comforts are taken away and everything in their life is all about survival.

I'm not sure if these sorts of books make everyone else think of how they would react in a similar situation, or if its just me. What I would do to survive, How I'd get food, find shelter, join with other humans, what sort of things I'd scavenge. Which neighbourhood I'd move into and which mansion I would booby trap. How to manage a chronic illness when medical supplies are limited and have ceased to be manufactured.

On one of the Facebook groups for Diabetes, one of the D-mums put up a post on a book she had been given. Sugar Scars by Travis Norwood follows a young woman with T1D in a post-apocalyptic world where a virus kills most of the population (only 1 in 9600 people survive). I'm going to somewhat review it now because I took the time to find it on Amazon, download it to my kindle and read it, so if you don't want to read some extremely vague spoilers that just give you the gist of things, stop reading now.

The book very much centers on the main characters struggles to survive with Type 1 Diabetes. There's not much plot besides her diabetes. It's not a bad thing. Certainly, I think the author, if he didn't have or know someone with T1D, must have done a boat load of research on Type 1 Diabetes.

The plot revolves around the main character, Sugar (we never find out her real name), as she collects insulin, and meets other people around her town in Tallahassee. Sugar finds the insulin around her town, sleeps with someone who can hook her up with electricity so she can run a fridge to keep her insulin cool, and goes about her merry life, essentially retired at 19 years old. (She does not have to forage for food because there are so much supplies available). At some point, it gets pointed out to Sugar from her sugar/electricity-daddy  that her insulin actually expires. It was probably at this point in the book that I started doubting that the author actually had diabetes himself. There is no way that you can be reliant on insulin to live and not know that it expires. We have ALL had that talk from our diabetes doctors about extreme highs caused by cloudy insulin, changing temperatures and the forgotten vials at the back of the fridge. Its just not possible for you to not know that insulin has an expiry date. It's stamped on the damn box and on every vial.

So Sugar learns the shocking truth that she too will expire if she doesn't manage to get some new insulin batches. She goes off on an epic journey to make insulin the old-fashioned way, looking up textbooks, cutting pigs open, getting her chemistry kit out to play with. Along the way she meets a vet who really likes to vet/misses his day-job and has turned into an animal-saving recluse. Somehow or other, I forget how, he ends up getting injured and Sugar has to stitch him up. The stitching up of human flesh is all going swimmingly, until he instructs her to sew through the subcutaneous layer, to which she responds (Wait for it....wait for it....) that she has no idea with a subcutaneous layer is. The only response I had to this was to slam the book shut and whine at one of the poor Diabetes Australia staff who happened to be nearby (I work very close by to Diabetes QLD...lucky for me, unlucky for them). I'm not sure where Sugar was taught to inject if not her subcutaneous layer.

I won't spoil the whole book, because it is worth a read if you are considering destroying the world and need to know how to make your own insulin (there are even some interesting side-plots). Its kind of refreshing to see a plot that isn't about killing zombies (but I do love Zombies) or warring against other humans, but is about surviving a chronic illness, plain and simple. A book relevant to my feelings about Diabetes in real-life, because I've had 'Get New Insulin' written in my diary for a month now and I'm down to my second last vial and I'm starting to wonder if I'll let myself die before I remember to get a new script and stop by the chemist. That fear is real.

Friday, 20 May 2016

Blog Week Day 5: Tips & Tricks

Let's round out the week by sharing our best diabetes tips and diabetes tricks. From how you organize supplies to how you manage gear on the go/vacation (beach, or skiing, or whatever). From how you keep track of prescription numbers to how you remember to get your orders refilled. How about any “unconventional” diabetes practices, or ways to make diabetes work for YOU (not necessarily how the doctors say to do it!). There's always something we can learn from each other. (Remember though, please no medical advice or dangerous suggestions.) 

I have to apologise for the lack of blog yesterday. I wasn't feeling it, and I don't like to force myself to write if I really cannot get into it. So there will be a double upload today. You can check out yesterdays blog, uploaded today here.

So without further ado: Tips & Tricks Time!

Diabetes Supply Overflow

A few weeks ago, I uploaded the meme I had created on leaving the house before and after diabetes, which was inspired by the fact that I have to take a mini-pharmacy everywhere with me. I have been trying lately to take some of the weight off my shoulders and try to use a small(er) handbag. I can leave the house now with a juice or pee-jar full of jellybeans, meter, strips, lancing device & pen. Of course it does depend on how far I'm going, ability to quickly procure more supplies & hypo treatment if needed, and how long I will be gone. Using CGM full-times means that sometimes I can even leave without meter, strips & lancing device. The hypo treatment & quick-acting insulin pen & 2 to 3 pen tips are the most important things I might need when out. I frequently run out of insulin throughout the day (I'm not good at looking ahead for my insulin needs). If I run out completely and there's nothing at all in my reservoir, I use the pen to inject insulin into the reservoir. No need to take a reservoir connector. If I am mostly out but have enough for basal but no boluses, I inject the boluses - but do it straight into my canula so I don't have to feel the needle. If you look at where the hypodermic needle goes through a canula (Medtronic Mios are particularly good for this) to insert it into your body, once you remove this needl there is still a small pin-prick sized hole that you can inject into to avoid having to stick an actual needle in your skin. Yes, I hate needles this much.

MINE (food)
I have a co-worker who likes to eat my jellybeans. I have begun to counter this in 2 different ways. Firstly I keep my jellybeans in a urine sample jar (those things are sterile) because no one wants to touch that. I have also recently begun stocking some Bertie Botts every flavor beans. They legitimately mean every flavor. There is a vomit flavour, one, and yeah it tastes as stated. I can't stomach them. So I put them on the top of my larger jar of jellybeans, with all the acceptable flavours way way down the bottom. My jellybean jar has remained untouched by anyone but me of late.

Girly BGL patterns
How many other people get warned against using parts of your body that aren't your stomach as canula sites? I'm sure my educator sighs internally when I tell her about the newest part of my body that I have decided to try with my canulas. Something about different absorbency rates. I've made that work for me. Previously I have given TMI when it comes to how badly my menstrual cycle fucks things up in the land of good glycaemic control. But no more! I have now worked out when my BGL is running higher, lower and holding steady over my menstrual cycle, and I plan my set insertion sites around this. During the few days when I am running higher, I place a Sure-T set in my leg, because the constant movement and more muscle gives me better sensitivity, helping to lower my BGLs. When I am running low, I place Mio sets in my hips, where I have the most fat and seem to have the worst sensitivity, to raise my BGLs. All that fat. Doesn't really move much. And when I'm pretty even I place Mio sets in my back and arms. I never use my stomach - that is CGM only territory, so is constantly in use by sensors. 

I'm sure I have many more tips, but nothing that my exhausted brain can remember, which brings Diabetes Blog Week to an end.

You can read the final responses at this link here.

Once again, Thank you to Karen at BitterSweet for hosting a week full of fun, creativity, personal reflections and no sleep.

I am looking forward to a weekend of blog catch-ups where I can finish reading the blogs (I think I got through roughly a quarter of all posts during my exceptionally busy week), and clicking the sign-up buttons on a bunch of them so I can continue to follow them. I also want to try to get into a few more of the online support platforms if I have time (I can find the DOC overwhelming in the sheer volume of support sometimes) and might even give that twitter thing a go (I think I have one, lying completely dormant somewhere).

Diabetes Blog Week Day 4: The Healthcare Experiance

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What's your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!

Excuse my tardiness. I started this last night, but got very, very tired and felt quite unmotivated. Today is a better day for motivation. 

In my perfect world, Healthcare would be more unified. At the moment, trying to access a range of services is a very disjointed, costly and timely practice. As a Type 1 Diabetic, my healthcare team should consist of:
 - A GP
 - Endocrinologist
 - Diabetes Educator
- Podiatrist (I had to ask my husband:"What are those foot people called again?" because I never see these guys)
- Optometrist
 - Mental Health team
- Dentist
- Pathologist
- Probably a bunch of other HCPs that I don't even know exist

Each of these different HCPs and medicine areas need different types of referrals, and usually require you to prompt your GP to be given information about them. A lot of the time, unless I know about and ask for the service that I am wanting, it's never mentioned to me. I've only seen the podiatrist once, because I had one service left-over on my care plan and the care plan nurse just allocated it to the podiatrist. I haven't seen a dentist for a little while because nobody is prompting me too, and that's just another thing to remember about my health. I do get a reminder to see an optometrist so I can get my licence every year, and I make my endo & educator appointments reoccurring appointments (Yeah, you can do that. Medical software has a cool 'Make reoccurring appointment' button that you can ask the receptionist to click).

With a disease like diabetes, trying to balance all of these appointments is hard enough, let alone doing the leg-work on each to find good doctors (or any nearby doctor at all), get a referral and make an appointment for each. Where you are regularly checked for each of these health points, and from this given access to doctors who will meet your health needs. My experience is that most HCPs don't know who to even send you to when you do ask, and they expect to be told a name to write on the referral. I was lucky that I already knew my endo before I was diagnosed, and that my endo passed me on to the worlds best diabetes educator. I did ask my GP for a mental health care plan once to talk about some mental health issues I was having related to my diabetes. I didn't know the name of anyone particularly good in that field, and was given a referral to the first name alphabetically on my GP's list of mental health professionals. The person that I did end up seeing thought that hypos were hilarious and said she liked watching people have them. As a side note, my fear of hypoglycaemia and subsequent high BGLs was why I was seeing her......She was not a winner in the health professional field.

So I guess ideal access for me would follow a path of:

1. See GP.
2. GP refers on to clinic nurse for full assessment of multidisciplinary health needs.
3. Nurse does up plan covering each aspect of your health (eyes, feet, teeth, mental health, educator, endo) and is able to give you suggestions on who meets your needs in each area. (This would rely on a better, shared health service where GPs can access notes about services in their areas used by all health professionals. The current model is very segregated where GPs must build up their own database of names, and sometimes they do not have any listed. I'm not asking for a program where Drs rate each other, bur rather an accessible database where basic details of any services (ie. area of interest, price, waiting list, what they are used for/do, etc) in the area can be logged by anyone coming across a new service. I do something similar to this in my job for a particular disease and patients are always very grateful that they can be told about multiple services near them in one conversation.
4. Referrals are given and arranged for all at the one time. This can also include support services such as health organisations (Such as DQ) or even support groups for particular illnesses in the area, rehabilitation programs, etc.

For patients who struggle to know which doctors they need to see and what support is available to them this could be a lifeline. As I mentioned previously, I run a support group, and my educator now gives out my contact details to any patient that she thinks would benefit from peer support. I am happy to work with her on this because it is one less thing for patients to worry about, and really creates a holistic approach to healthcare.

For other brilliant posts on this topic, please see here

Wednesday, 18 May 2016

Diabetes Blog Week Day 3: Wild Card - My Day in Food

Some people track every bite they eat, some might not remember at lunch time what they had for breakfast or if they even had breakfast. For one day, document everything you or your loved one with diabetes eats and drinks. The good, the bad, the ugly, the proud, the ashamed, the...whatever. We promise not to judge!!

I am intrigued by this topic. I am an advocate of the notion that being fed is better than not being fed, and so therefore encourage no judgement on any food consumed. The topic, even though it is judgement -free, is still asking me to evaluate what I put in my mouth and when.

So it is with trepidation that I start about evaluating my food choices for the day.

 A bowl of cereal, not measured, eaten hurriedly at my desk at work. I eat Special-K because my husband tells me it has an acceptable protein level. I don't really care about that, but he does, so I continue to eat my cardboard tasting cereal. I don't know what happened today, but my BGL afterwards was 16, when normally for the exact same meal every morning my BG is at 6 - 7. I guess diabetes just wanted to remind me that its still hanging around.

BGL back to normal! I had a meeting at 10am, so made a hot chocolate and had a half an oaty slice muesli bar to tide me over until lunch.

I was *swear word-ing* lazy this morning when I got up, and skipped the making lunch part of getting ready. There's not too much open for lunch right near my work, so I went to Maccas to have a banana bread. Banana bread is basically my thing. I would sell my kidney for a good slice of banana bread, and Maccas do some of the best, even though I refuse to eat anything else off their menu.

Its the afternoon, so I was dropping. I had the last half of my muesli bar and some crackers that I found in my snack drawer at work. It did the trick and I was able to drive home without having to down an over-heated popper. Score.

Still bloody tired, so I napped when I got home and didn't plan dinner. The result was a Grill'd burger and some sweet potato fries.

Typing this list shows me that I still hate seeing what I have eaten. From morning tea onwards I can only tell myself that I am a horrible human being when it comes to food. At least tomorrow I have a later start and will have time to make a salad sandwich for lunch.

For more blog posts on this topic, click here.

Tuesday, 17 May 2016

Diabetes Blog Week Day 2: The Other Half of Diabetes

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk? (If you are a caregiver to a person with diabetes, write about yourself or your loved one or both!)

I'm taking a break from reading yesterdays blogs to type this. Because Australia is often the first country to participate each day, I find that the best catch-up time for me is the next day, when the rest of the world has woken up to share their thoughts. 

I think the best way to answer this topic is with a question of my own. How doesn't diabetes affect me mentally and emotionally? The emotional side is the part of diabetes that I struggle with the most. I don't like needles, set changes, finger-pricks, blood, insulin, hypos, hypers and all the rest that comes along with diabetes. But all those aspects are much easier dealt with when I take away the mental and emotional side of diabetes. They're all just actions really. It's when I start to think of how each action I take, each number I see, each set I change, each change to my bolus or basal insulin affects me that diabetes really begins to...affect me.

I have developed a way of coping that I am not sure is really conducive to my health, but it gets me through each high and low reading, so I'll share it anyway. I tell myself that tomorrow I get to start fresh. Its probably a little bit of denial about the bad things that happened to my diabetes, but if I forgive myself for the things that didn't go right, I can start the next day wanting to try. If that doesn't work, a good old cry in the shower or rant about nothing usually does the trick. You just have to get through now to get to the next moment when you can feel good about yourself and happy again.

In an odd twist, diabetes has in fact aided my mental health. Pre-diagnosis I struggled a lot with anxiety, to the point I would pass out. In forcing myself to forget the consequences of whatever I did to make my BGLs behave as they do, and telling myself it was ok to let go for now, I have had more control over my anxiety. I still get anxiety - and sometimes it is diabetes related - but I am much better at knowing how to control it and move myself on quickly. I haven't passed out once since diagnosis.

The mental aspects of diabetes will never go away, so long as diabetes keeps insisting on following me around. I have just learnt not to let them get me down for too long.

Monday, 16 May 2016

Diabetes Blog Week Day 1: Message Monday

Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

I open my mouth, and opinions come out. My blog is a space where I can vent, rage, be happy, hopeful, sad, and educate; hopefully without judgement.

One of the reasons that I did start writing my blog was as a way to self-support. Support is often the message that I want to convey the most. Diabetes is a critical and hard disease to cope with, and support in dealing with diabetes can make or break a bad diabetes day.

I find that a lot of my messaging highlights how the general community can help support us, through educating them further about all types of diabetes, how language use can impact on us, and trying to correct untruths told about diabetes.

I look to give myself emotional support. Sometimes I just need somewhere to write down all my frustrations. I am one of those people that needs to get bad feelings out of my system. If I can have a rant or whinge or cry about something and lay all my feelings out, I can move on quite quickly and go back to my normal happy self. Most of the times, I completely forget who or what it was that I was even cranky about in the first place.

I look to support others living with Diabetes. Earlier today I finished tapping out my response to the CGM announcement (self-support), and made a point of the lack of support that I feel as an adult with Type 1 Diabetes. When I was first diagnosed with diabetes, I didn't have any familial support. I didn't have any support from my friendship circles. People either did not want to or did not know how to help support me through my diagnosis. My first month living as a T1D was hands-down the loneliest month of my life. I created my own support, but I never again wanted to see anyone struggle to get support like I did.

I have since created a face to face support group for young adults, and talk regularly with group members, some of whom have become close friends.

Raising awareness of issues is one way that I can help to support others with T1D.

Reading other blogs helps me feel supported.

CGM Brain Jumble

On my Facebook, in my messages, on T.V. All day yesterday I watched news cycle around about the CGM-funding announcement that came from Turnbull's office.

The announcement that, if elected, the coalition will invest $54 million in subsidies for as many as 4000 children (up to the age of 21) to receive CGM funding each year. 

I tried to write about my feelings yesterday, and found that I couldn't. I stopped, started, stopped and went for a walk to try to sort through what I wanted to say. Finally, I wrote down all the crazy jumbled feelings in a document so that I could try to sort through them. I don't know if I'd ever felt so confused about a diabetes announcement in my life. I had to reconcile with myself the conflicting feelings of happiness, sadness, anger, hope, and utter deflation. 

It wasn't until I read Bec's blog that I could even start to sort out why I had spent the day feeling so off about it all. 

I was of course, immediately happy about the announcement. CGM is an invaluable tool, and I am so happy that it was finally being recognised and may potentially be offered to kids who could really use it. And I was happy that it meant that Type 1 was being talked about for once - and even all day long! Something was actually spotlighting us. 

I was hopeful that now that the conversation had been started, that it might continue. Hopeful that one day CGM would be more financially accessible, if this much attention was being paid to it. Hopeful that all the hard work of those groups campaigning would pay off, and they would be rewarded for their efforts.

But after that happiness came the disappointed anger, that Type 1 was being shamelessly bandied about as a way to garner votes, with no set-in-stone promise to show for it. After the election there is every possibility that it may not be mentioned again given the lack of timelines and delivery mentioned, so I felt scared about how it was being used as an election tool, aimed directly at those who had made the most noise - the parents of Type 1 kids.

There was guilt. A lot of it. Knowing that I will more than likely be voting against the technology, because I care about the bulk-billing system and other agendas more. I am hoping that the Labor party will announce a similar pledge to ease my troubled mind. But as an adult with Type 1, trying to save for a home loan, I see a bulk-billed GP and rely on my blood tests to be bulk-billed so that I can afford to see my diabetes specialists. I cut money in a medical-sense where I can to ensure that I can pay for the specialist help that I need to adequately control my diabetes. It has been made very clear that the Turnbull government are still going ahead with the cuts to pathology, no matter what the papers are reporting. It would mean more personal cost to me, to vote this policy in. Its a hard thing to ask someone to do, when you give them the choice to either betray their peers or accept a significant personal cost to themselves, with no guarantee that the cost will even end up being justified. 

I feel a loss on behalf of Type 2 patients. The CGM funding, if it progresses past policy stage, will be added to the NDSS. With the recent cuts to the NDSS in regards to the ability of a Type 2 patient to acess subsidised testing strips, it feels a bit like robbing Peter to pay Paul. 

I feel left-out. Again. As an adult with Type 1 Diabetes, there's not much on offer, and we are severely lacking in support. There are programs for schools, youth transition services, camps and pump-funding grants aimed towards children; there are telephone peer support programs and educational programs for Type 2 patients, and programs, a dedicated website and telephone support program for women with GDM. There's nothing listed under support for adults with Type 1. This was just another area in which we are being overlooked and underfunded, despite the fact that we face the exact same consequences from not using CGM as those under the age of 21. (In fact, in the report by Tu et al in The Medical Journal of Australia 2008, the mean age for dead in bed is well into the adult years, at age 30.2). 

I would be glad and happy to see young type 1 children be given the opportunity to grow up with a little less stress so I am in no way begrudging the children who may receive this subsidy. A very long time ago, when I found how hard it was as an adult to even qualify for a pump, I made peace with the fact that people don't really care what happens to you when you outgrow your childhood chubby cheeks. An acknowledgement of my loss of opportunity doesn't hurt though. That's probably one of the biggest reason that I had a small tear-fest yesterday. My loss, our loss, in this celebration wasn't even given the briefest of mentions. By any party involved. Even though we campaigned right along side all the parents.

I guess I'll play it by ear, and whatever happens, happens. Given that I had the audacity to both age past 21, and get diabetes as an adult, I'm not holding my breath that the funding will ever extend to me. It will just be a nice surprise. Either way, I hope Labor comes to the table so that the kids of the future will have the tools they need to help manage their diabetes at their disposal.

Sunday, 15 May 2016

Basal Tune Up

One of the (many) reasons I love wearing an insulin pump is because it uses only short-acting insulin. Short acting insulin, because it wears off much faster, allows you to more closely mimic the functions of a type zero pancreas in ways that long-acting background insulin can only dream of.

Throughout the day, my insulin needs can fluctuate by a lot. At my most insulin sensitive, I am using less than half of the insulin that I use when I am least sensitive.

Trying to calculate how much insulin I need, hour by hour, is not easy. What works for me one week, doesn't work the next. I lost my rhythm a year ago, and it has taken me that whole year, and constant CGM use to find a basal pattern that puts my A1c within reach of my target.

My background insulin is another way for me to tell the story of my life, for anyone who knows how to read the numbers.

19.00 to 04.00 - 0.9
The night-time shift. It took me many many months to get this basal pattern right. This basal rate holds me steady during dinner, steady at bedtime when my body is still chasing some straggling carbs floating around, and keeps me level all throughout the night. It is one of my higher basal rates, showing the effects that inactivity while sleeping has on blood sugar levels. It can't account for any spikes I might see from nightmares, or lows caused by any extra activity the day before, but nothing can really, except an actual pancreas.

04.00 to 08.00 - 1.1
It seems a small rise - only .2, and some would wonder wether it is truly needed. At around 4am, my body starts to wake up - releasing a bunch of 'time to get up now' hormones. Hormones and diabetes are not friends. I employ this small amount of extra insulin at wake-up time to help enforce law and order in my blood sugar levels. You don't give diabetes any unsupervised play time at night - the dry-mouthed, over-tired consequences are not worth it.

08.00 to 15.00 - 0.8
 My job is mostly sedentary, accounting for a higher basal rate. When I previously worked at a video store on my feet all day, I had a lower rate. From 8am until 3pm, I am mostly sitting at my desk. . This rate is also slowly dropping, as my work place has recently supplied us with those fan-dangled sit-stand desks, allowing me more activity during the day.

15.00 to 19.00 - 0.4
 I aim to exercise at 4.30pm (when I get home from work) everyday.  I have a delayed blood sugar response to this, and the blood sugar drop that corresponds with the extra movement of my limbs happens from about 3pm the following day (22.5 hours after I do the exercise). From 3pm, my blood sugar levels drop sharply, and I require little (or no) insulin until I sit down for the night. I also do my housework and cook dinner during these hours. Its pretty amazing to see how simple little daily activities can affect blood sugar levels.

People associate the pump with freedom - it is. It also isn't. Every thing that is programmed into my pump assumes that I will follow the same pattern of living day in, day out. Theoretically, the pump allows me to get up at 6am to exercise one day, and 4pm the the next. Yes, I can do this and have no ill consequences whilst I exercise, but I also can't do this because of the patterns that the insulin follows. It creates a logistical nightmare the next day, when all of a sudden my insulin needs drop at 4.30am (when I have the most basal insulin, leaving me prone to an overnight hypo) instead of at 3pm (when I use the least basal insulin). 

Thursday, 5 May 2016

Ecologically Diabetic

Diabetes guilt comes in many forms, including the shiny plastic packaging that each and every one of my diabetes supplies comes in.

I really started to notice my diabetes waste in early February when I was trying to cram 30 days of diabetes in the small spaces between my thermal underwear, toothpaste and multitudes of scarves for my Europe Honeymoon.

For every box of test strips, I was filling my recycling bin with a cardboard box, a round tube (as I stuffed all the test strips from one box into one canister) and some folded up paper (presumably instructions) that I have never ever read. For each box of canula sets I folded down way more cardboard than was actually needed. Everything that I needed to stay alive was compacted down into one small black packing cube, and one big pile of environmental guilt.

Fitting all this....
...into this!
 (for reference, this bag is roughly the same size of an A4 piece of paper, and about 5cm deep)

In Italy trash was just part of the scenery on a train trip, forcing my mind to the bags of waste that filled my bin every week back home.

When I got back to Australia, I started researching how to live in ways that were more ecologically sustainable.

There isn't much I can do diabetes wise, but where there are small ways to cut back on what ends up in Landfill, I will. Buying one of those monster kilo chemist bulk bag of jellybeans is better than buying cartons of poppers. Buying test strips that come in boxes of 100 instead of boxes of 50 means I am halving my box-waste, and wearing CGM means using and producing less test strip waste. Fingers can be wiped just as well on the back of a dark pair of pants as a disposable finger wipe (I actually had some DB wipes for a millisecond, but refused to use them on the principal of producing less waste).

I also reuse reservoirs until the markings have completely faded from them, but that was probably more of a wallet-friendly decision as opposed to a green decision. It just sort of serves a dual purpose.

If I was really creative, I could probably go down the route of Ciara Carew and design some fashion from old reservoirs and strips, but I will leave that to the pro.

Diabetes is not the only waste-producing culprit in my household. I was super excited to ditch all those little plastic baggies that you stick meat and veggies in and order some fresh produce bags, a bread bag, and some reusable beeswax cloth wraps to wrap foods in (like my cut cucumber and sandwich, below).

As we use sauce jars, I wash them out and stock them in a newly cleared space in the cupboards, ready to store deli meats and to freeze foods in.

An unexpected gain of my ventures into trying to buy and store foods with less waste, is that buying in this way somewhat forces you to make healthier, fresher food choices. I look for the items that come with little or no man-made wrappings, which is basically the fresh produce sections. I always know what veggies I have, because I marked all the mesh bags - whenever one runs out, I pop it straight into my bag so I can see at a glance which veggies I need - and I know instantly if I can make the recipe that I want at home or if I need to pick something up. When I'm prepared, I eat less take-out. Bread is now straight from the bakery, where I pick up high fiber-low GI, sliced and placed straight into my cute blue bread bag. Meat is bought fresh - I am that crazy lady who shops with her own containers, and asks the deli workers to place it straight into my tared jars. No plastic.

Win for the environment, win for my body, win for a guilt-free mind (and probably, an inadvertent win for my BGLs!)

Friday, 29 April 2016

Where Have All the Test Strips Gone?

Imagine if you were told you were no longer allowed to access the tools that you needed to make proper decisions about your diabetes care. In a disease that requires us to constantly analyse our healthcare decisions, how would you manage your highs and lows if you didn't know they were even happening? How do you know how much that extra mouthful of dinner affect your glucose levels? Does the thought of having no way to tell how your body is being affected by your diabetes scare you? 

Stop imagining. This is now the reality for a lot of Australians living with Type 2 Diabetes.

"From July 1, all people with type 2 diabetes who are not using insulin can purchase an initial six months’ supply of subsidised blood glucose test strips.

After six months, people with type 2 diabetes who are not using insulin can access subsidised test strips if their doctor or an authorised health professional wants them to continue testing. This change follows the independent advice of the Pharmaceutical Benefits Advisory Committee.
Importantly, if a person needs access to subsidised blood glucose test strips for clinical reasons, they will continue to receive access. This may include people with gestational diabetes, on certain medications or people with inter-current illnesses."
Its hard to process exactly how awful these changes really are. I have Type 1 Diabetes, so I will continue to recieve subsidised test strips. However, all types of diabetes can end in the same dire consequences if we are not given the tools we need to adequately control our diabetes. 

The message that is being given to people with Type 2 Diabetes is that their diabetes care, and by extension, total health care, is not important or a priority. That their feet, eyes, kidneys or even lives are easily expendable in order to subsidise the debt and expenditure of Queensland Nickel. 

Many of the messages that people with diabetes see about their disease are the messages of prevention - the message that you should not end up like us, to be healthy, exercise, eat well, take the stairs, quit smoking and never drink alcohol. Yet in this case, that message is quite the opposite. Blood glucose testing is a reliable, in the long-run inexpensive way to prevent complications that are far more costly to the healthcare system than test strips. Furthermore, people with diabetes are encouraged to enjoy a healthy lifestyle to help prevent these complications  - but being healthy is much harder when people with diabetes are being denied access to an integral part of their diabetes care. Oral medications for Type 2 Diabetes can cause hypoglycaemia, which can be very dangerous, and needs to be treated immediately. Exercise may become a thing of the past to those who do not have access to test strips, as it can be very hard to manage safely, which anyone using any form of hypoglycaemic agents will know. 

Without access to blood glucose testing supplies, how do those with Type 2 Diabetes know when its time for them to move on from diet control to medication, and from medication to insulin? Without test strips, a person might remain hyperglycaemia for months on end with no idea, especially if they are not receiving regular HbA1c tests (which, with the changes to medicare subsidies for pathology tests, is more likely. I have even told my doctors that I will be moving from 3 monthly to 6 monthly blood tests in light of the extra costs). In some early-stage Type 2 Diabetics, where they are managed by a GP, they might only have an annual diabetes check-up. You also have to include those patients that are not inclined to seek medical advice often, and may ignore high symptoms if they are not encouraged to test their blood sugar levels.

The fact that there have been no provisions made for a patients right to take control of their own health is appalling. As stated, the ability to procure subsidised test strips will rest entirely with health professionals, and if they want the patient to continue testing. This further alienates the patient from their own healthcare, if they are not given the right to decide how closely they wish to monitor and control their own chronic illness. Access to doctors in some areas can be quite limiting, and this could negatively impact on the ability of a patient to receive that recommendation that they should continue testing. 

Having done my licence renewal recently, I note that this new policy doesn't seem to account for the requirement for anyone on any hypoglycaemic agent, oral or otherwise, to test their blood glucose levels before driving to ensure that they are above 5 and safe to drive. 

The implications of the decision to limit access to blood glucose testing strips to people with Type 2 Diabetes are already there. I hope that they will be realised before irreversible damage is done to any individual with diabetes.

Credit: Insulin Nation

Monday, 18 April 2016

Leaving the House with Diabetes in Tow

I do a lot of cleaning in my life. I like order, neatness and surfaces with nothing on them. My house probably gets 'spring-cleaned' 4 times a year. Once I'm done spring-cleaning my house, I'll move on to my paperwork, my computer & my emails.

I'm up to emails right now, and I'm happy to say I only have 4 emails in my inbox, all with actual useful information in them.

One of them, I can delete once this post is done. My husband sent me the picture below, and I never did anything with it until now. There was no explanation in the body of the email. There was no body of the email at all, just a subject line of "You Perty" (Thanks Hun, you perty too).

There wasn't really an explanation needed. We don't have kids. I do have diabetes though, and that's close enough. 

Some very bad photoshop skills later, and this is what I came up with:

Sunday, 17 April 2016

Welcome Back King

At 1.30am on Tuesday morning I should have been sleeping, but I wasn't. Ignoring the fact that Brisbane was still almost too hot to exist at 94% humidity (Seriously Brisbane, we're mid-way through Autumn now), I had another reason to be blearily rubbing my eyes and yawning out any and all curse words I could think of. I was happily tossing and turning, kicking the sheets away and generally taking over as much bed space as possible when my husband shook me awake.

My pump was blaring away about something. I mashed some buttons, assuming it was nothing I needed to know about. It blared again, so I forced myself to crack open an eye and read the screen. Some sort of message about power failure and basal being stopped. I sort of knew it was coming because it had asked for 2 battery changes within 48 hours. I probably should have called the helpline then - but laziness and denial are some of my best friends. If I had called, I would have found out that apparently you can fix that particular power failure problem yourself, and it would have saved a lot of hassle afterwards. But 1.30am. 

I was tired and I just wanted to go back to the land of nod. I decided to set up my back-up pump, took the battery out of the malfunctioning pump, and shoved it deep within my sock drawer while it continued to beep about it's battery being removed. 

I called the helpline the next day, and they talked me through the power failure. Unfortunately, I had already set up my back-up pump with a sensor. I had swapped the transmitter to my old MiniMed transmitter when the pump malfunction happened, not wanting to waste a sensor that I had only put in 3 hours beforehand.

I am pretty impressed with the life of my MiniMed transmitter. I think that transmitter warranty life is about a year, but it has been kicking along for 3 and a half years now, and still holds charge well, whilst somehow seeming to give more accurate readings the older it gets. Though that could just be that I know all the tricks now.

So at least I have my back-up transmitter and pump working, but it's driving me nuts. I'm definitely a spoilt princess of diabetes land, and I'm used to my new technology.

I have to press the esc button to see my sensor readings, rather than having a beautiful, colourful graph and SG displayed on the screen at all times.

The sensor doesn't suspend before low - only on low. I actually have to treat hypos myself. I have a toothache right now because I've been having to have juices, when normally the sensor just catches me and I don't even think about it.

I have to scroll into a menu to set a temp basal. Being my lazy self, it just means that I haven't set a temp basal since swapping onto the old pump. With the 640G, the shortcut to a temp basal is on the screen, and only takes 2 seconds to set-up.

My meter doesn't connect!!! I have to save things manually in capture event. Sadly, my educator will just have to scroll through my meter because I am not bothering to capture that many events. And wearing a dress this week has been hard, not being able to bolus from my meter. Many, many strangers have seen my undies this week.

Don't get me wrong, I still love the old MiniMed, but I am so used to the 640G and its more intuitive programming. I swear, it can tell what I'm thinking and what I need. Its just a lot less thinking and time spent actually using the pump on my part. I kind of just let the 640G do its thing.

Thankfully I am connected back up to the 640G again with a new sensor due to start tomorrow morning. I'm going to treat this as an exercise in the art of appreciation.

Thursday, 14 April 2016


A week ago I received a letter in my mail from the NDSS, informing me that the way I received my pump consumables would change. I vaguely glanced at it, shrugged, and aimed it at the garbage for 2 points. I'd had a stressful week and wasn't in the right frame of mind to really comprehend what that horrible little letter contained, but it was still in the back of my mind.

The contents of the letter were dragged from the depths today when I had an email from my pump company, Medtronic, wanting to warn pump users of the impending consumables apocalypse. 

"Whilst the change-over date has been made clear, the timing and process for the transition is still very unclear...we are unsure of the impact of the transition and how you access your pump supplies during May and June....

To ensure you don’t run out, we urge you to consider stocking up now. This way you will have peace of mind during the next 4 months of supply transition."

This email was in response to the recent announcement:

"The Federal Government has announced that it will implement changes to the National Diabetes Services Scheme (NDSS) from July 1, 2016...diabetes-related products will no longer be distributed through Diabetes Queensland or via other agents of Diabetes Australia interstate.
From July 1, subsidised NDSS products, such as needles, syringes, blood glucose test strips, urine test strips and insulin pump consumables will remain available, but through community pharmacies.'

From what I can gather, based on the wording in the article, is that this was a Federal Government decision, and not a good decision. I'm guessing that they think having pharmacy point collection is a good way to cut costs, either through being able to cut funding somehow if DA is no longer needed as an access point, or by cutting postage. Probably a brutal-budget mix of both.

The email from Medtronic today was essentially to say that so far, the federal government hasn't felt the need to clue them in on how this change of access points is going to happen. In an online-group discussion tonight, it was pretty clear that no-one knew how it was going to happen - including those group members who worked in NDSS pharmacies. 

At this point, the alarm bells going off in my brain have moved beyond a constant ringing to full-on emergency bomb-blast sirens screeching.

If the pump companies themselves and the NDSS access point pharmacies don't know what's going on, its probably time to panic, do as they suggest, and start hoarding supplies for the long haul. Winter is coming. I'm not trying to be a dramatist or anything, but I did just max out my bank card bulk-buying enough supplies to last a good 6 months.

I can only imagine that this warning telling everyone to start stocking up is going to impact on pump consumable stocks. Black-markets for hard-to-find pump supplies will start popping up soon. I better work on my haggling skills, and be ready to trade my first-born.

What's not also clear is:

1. - What the deal is for those who live rurally? They are likely to be impacted quite a lot by this move. Rural pharmacies may also be less likely to stock items if they only have 1 customer buying the product.

2. - How pharmacies will handle this in terms of stock levels? One of the reasons I like ordering online so much is because I can bulk order - and I always have, I usually order 4 months worth of supplies at once. Bulk ordering comes in handy not only for lazy people like myself, but those who are wanting to travel (I ordered so many supplies before I went overseas!), and again, those who live rurally and remotely. Pharmacies often place irritating self-imposed limits on how many of one item you can buy - for example they may allow you to only buy 1 or 2 boxes of test strips at a time. This will limit the ability to bulk order

3. - How are pharmacies expected to stock the necessary consumables? The test strips that I use are not stocked in store - presumably because pharmacies tend to only stock a few different types of test strips due to space restrictions. Same goes for pump consumables. Where are they finding the room to keep all the many, many different types of strips, reservoirs and canulas? Will they just have a wall devoted to diabetes care? With the amount of pump users in Australia, its not likely.

4. - If they're not stocking the consumables in store, are they ordering them on an 'in-demand' or 'special-order' basis? If so, how is this any different at all to letting us just order through DA? Same amount of postage because they'd just be getting small shipments in for each customer all the time. They wouldn't be able to wait until a certain amount of orders were reached - because again, there's not many Type 1's to begin with, let alone the much smaller number on pumps.

Another factor to consider, that I highly doubt the federal Government has even thought about it, is that this may directly impact on donations made to DA. Thus cutting support even further. I always include a donation every time I order - I factor it as 'postage costs' (seeing as we don't pay postage) and just hand it over as a donation instead. I don't miss the donations that I make, because they're small enough not to impact, but they can tot up to a fair bit over the year. I will of course still donate, but I run the risk of not remembering unless reminded. 

 I'm going to need to see a proper plan before I'll start to believe that this was ever a good idea on the federal government's behalf. Until then I'll be making sure I keep my hoard of supplies well stocked.