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

3282

Yesterday, I talked about the 'T1D Looks Like Me' campaign which you can access here if you would also like to smurfify yourself.

Today, I'd like to show you what a different aspect of T1D looks like.

A year ago, on WDD2014, I started a collection, of sorts. The 'D365' project. It's not quite complete, but I thought I would share a preliminary look with everyone now that the initial collection is finished.

This is what a year with Type 1 Diabetes looks like:

125 Set Changes. 

125 times I pushed a cannula into my leg, stomach or back. That's  1 cannula every 3 days.

Some of them hurt. Alot. Some hurt for the entire 3 days they were in. We don't have any way to x-ray ourselves & find the nerve clusters before we put each cannula in.

3282

3282 Testing Strips. That's how many times I poked a sharp needle into my finger, hard enough to make them bleed. 

3282, is an average of 252 tests per month, 62 tests per week and 9 tests a day. Even when my fingers ache.

208. The number of hypoglycaemic events experienced. The number of times that my blood sugar was not high enough to sustain life long term and required immediate attention. That's 1 low blood sugar every 1.75 days. Sometimes, you can have 4 in one day, and sometimes, none for a week.

There is no way to predict a hypo (or trust me, we wouldn't have them!).

But in Diabetes land, we have this amazing tool to help us manage our diabetes. It's called CGM.

CGM is expensive. But it can stop hypos. Want to know why I was hypo free for 5 days straight? CGM. 

Think 3282 is an awful lot of pricking & poking? CGM gives my fingers a much-needed break.

I'm not holding out for a cure. I don't believe in one and I don't particularly feel like I need one. I can and do live my life just fine with my T1D. What I do want are the tools to HELP ME live with this disease, day in, day out. Like CGM. And in future, the artificial pancreas, or closed loop system, or the smart insulin patches.


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Reasons Why I'm Hypo:

The counter has been reset. I went Christmas shopping.

The Best 10 2 Letter Words You will Ever Hear

'EXPOsing Diabetes', an annual event in Brisbane held by Diabetes Queensland, rolled around on Saturday. I love these events, and recently swapped over from attending them to volunteering at them.

I got the best of both worlds. I got to spend my entire day talking to other people with diabetes. As always, it's a place to feel normal. A place to relax and let my diabetes run free. Well, maybe not too free...

From behind the information table, I briefly wondered, as I stood next to people with fully functioning pancreases, if they ever feel overwhelmed by us at these events. If they stand back a little and wonder how they're going to escape a crowd clamoring over them for information and for the free diabetes goodies on display. Do they feel different?  The odd ones out? Do they think about, and hope, that they'll always be on their side of the table? Do they hear patient stories and sigh in relief that it’s not them?

I don't know why I wondered this. I think because I was on a different side of the table to usual. I was separated from the patients. Usually, I'm swapping stories. But I just listened this time. To a story that was bigger than just my diabetes, one that belongs to many people. It’s the story of people with type 1 diabetes, type 2 diabetes, their families and friends.

We share a great story, simply by living our lives and not letting diabetes stop us. Thankfully, sharing information and enabling self-learning is a part of this story.

It was just before afternoon tea break that I found myself talking to Rob Palmer. A plunge in BGLs had seen me having just scoffed 3 mini muffins in quick succession. He asked how the muffins were and all I could offer up was that as I was cramming them in I had a vague sensation that there was food in my mouth, but I wasn’t aware of having chewed that food or how I managed to swallow it. I really didn’t know what they tasted like, because hypo doesn’t need you to taste things. He pointed at a demolished jellybean packet and said it was from his 2.something earlier.

Later that day I quietly slipped into the back of the Type 1 presentation room to hear Rob address the audience. His scattered story was enrapturing. He was someone whose story the audience ‘got’. He had all the hairy diabetes moments that are part of daily life for us, but he also had the great stories about spending a week on a boat surfing, long days at work and doing it all with a smile on his face.

He rounded it out by passing on the best 10 2 letter words strung together: “If it is to be, it is up to me”. It encapsulated the day perfectly. I love EXPO because it does aim to empower people with diabetes to live their lives to the fullest. Patient education gives us the tools to help us achieve the things we want in our lives.

I don’t have any dreams of being a TV star (I’ll leave that up to Rob, who has a much better personality for it), but I have some good reasons of my own to take control of my diabetes to make sure I can do what I want with life: travel, babies, getting my kellion, throwing old lady tantrums and being buried with all my limbs intact.

Fantasy Diabetes Device

Whenever Blog week rolls around, there always seems to be a topic on fantasy diabetes devices. I usually ignore that topic and run off to find a suitable wild card topic. There's never been anything that I needed a diabetes device to do that we don't have already. I mean, an app on your phone where you take a picture of your food and it tells you how much carbs are on your plate would be cool, but I don't really need it. I've got chocolate all figured out already, so really, I'm good here carb-counting my own meals.

But now I've thought of something. Guys - it's going to get a little girly in a second, so if that isn't your cup of tea - kindly click away to another, less feminine, post.

One of the awful truths about being female is that whether you want her to or not, your Aunty Flo wants to drop in every month or so for some female bonding time. You learn to live with it. My problem is that my diabetes loves Aunty Flo. He's always acting out whenever she comes to stay, trying to get her to notice him. But then the diabetes tantrums start once she leaves and he realises he's been left all alone again.

Its only a recent problem. Despite sulking objections from all my HCP's, a few months ago I quit taking the birth control pill after deciding I couldn't live with the side effects anymore. Best decision ever! Unless you talk to my HCPs who weren't too happy with the decision. Sadly for them, I don't care to listen to their opinions on the matter at all and am rudely ignoring their pleas to think about the possible unplanned children. I don't really plan on having any unplanned children, so I don't know what they're worried about really.

Since ditching the pill I have no idea what diabetes wants anymore. I know that I have a pattern that follows my menstrual cycle but by the time I can be bothered to change onto another pattern in my pump I've moved on from the low stage to the high stage.

So basically, what needs to happen is that someone needs to add a new kind of pattern to the pump that follows a set cycle of time before it loops back. Currently I have 3 different patterns set into my pump - 'nomal', 'A' & 'B' - normal for when my BGLs are behaving, A for luteal and B for follicular phases of my cycle. I'm ridiculously lazy and would rather spend a week hypoing a minimum of 5 times a day than simply switch my pump to my A or B pattern. And I won't even consider setting a temp basal every day. Its just more to think about.

My fantasy diabetes device is a pump, that upon set-up, asks if you're a female or male. You can select female and set a basal cycle length - i.e. 28 days. You can then set patterns inside a pattern - so tell it to have one pattern for say 5 days, before automatically switching to the next pattern, which may deliver less or more insulin, and so on and so forth, to follow your cycle.

Does anyone realise how much easier this will make my life? Why is this not a thing yet? Medtronic, are you listening?

640genius

Let's start this post off with something amusing. A few days ago my 3 hour CGM trace totally looked like a cat. Excuse the bad BGL. Apparently my supposed carb-free meal that I bolused 2 units for anyway is not all that carb free.

Moving onto the important stuff. Yesterday, a 4 year old boy from Perth recieved the 1st MiniMed 640G pump. I had the opportunity to play with one of the pumps last week, so I thought it only fitting that I should wake myself up enough to ramble about the new pump, and how in love I am. And how super jealous I am of that 4 year old kid.

This is just a first impression based on an hour of asking my rep loads of questions; but I'm preeeeeety sure if I was one of those people who married mundane random objects then I would be saying my vows to the 640G pump come May instead of my fiance. If you're reading this my dashing H2B, sorry darling. Girls just like men who save their lives. And my pump does it more than you do.

The 640G. Here we go. Aesthetically, if you're a boy, you're gonna love it. If an insulin pump could have muscles, this one could have rivaled Arnold Schwarzenegger at his peak. It looks strong, and sturdy, and ready to do some life-saving business. I will definitely be upgrading to the pink model (the 640G comes in pink, blue, opalescent white, black and purple) come upgrade time, because I am a girl....and I like my pumps to look pretty. All the pumps have a black base, with a coloured front. You can choose to stick the colour onto the back as well or leave it plain. Personally, I hope they release decals or gel cases for it as with the previous models of pump. Size wise this baby is only a few mm more than the previous models, probably to help with all that new waterproofing!

The new 640g

Now here's the fun part, all the exciting features that I am still trying to wrap my head around. As always with me, let's do a list!

• Bigger, brighter, better screen. Actually I don't think its bigger, but it is certainly brighter and better. The screen is now colourful and has a light-sensor that will change the back-light according to your surroundings. No more squinting in the sun and groping around blindly at night.
• The screen displays more stats at a glance. It tells you how much active insulin you have on board without having to go into a stat screen anymore. If you have CGM on the graph is displayed all the time. There is a display at the top of the meter for insulin left in the cartridge & battery, as well as a visual for when your next calibration is required for CGM. There's probably some other stuff that I forgot already.
• Menus are almost the same, but with some added features, such as the ability to choose which bolus types you want to have activated. For example I use Normal & Dual Wave boluses quite often but I haven't got the foggiest idea what a Square bolus is...so no need to have that activated.
• There are options now for a pre-set temporary basal. As with the last pump you can add more than 1 basal pattern, but you can now add temporary basal patterns of a predetermined time length and strength. So you can pick a preset exercise temporary basal, etc. You can also NAME these patterns, so you don't have to remember what pattern A, B and C are meant to stand for.
• Again 2 reservoir sizes :)
• Waterproof!!!! Although I never needed it before as I am such a bad swimmer, I do feel confident in the fact that I can accidentally fall into a pool with my pump on now if I should wish it. Or get caught out in the rain, which is actually very likely for me as I love love rain.
• Customisable alarms.
• Meter that talks to the pump, with a better margin spec than the original (15% as opposed to 20). The Meter also has a strip port light for late-night testing. And my personal favourite that totally won me over to actually trying the meter: DOUBLE-DIP strip technology. Yep, you read that right. NO MORE NOT ENOUGH BLOOD ERRORS! Does anyone else realise how much money I will save on wasted strips because I didn't get enough blood. (Just clarifying: double-dip technology means you can add more blood to the strip if you didnt put enough on the 1st time).
• Glucose meter boluses for the pump. It does not use the bolus wizard, but you can use preset boluses on it. Eg. you can save a 'breakfast', etc. bolus if you eat similar carbs for that meal and just select that bolus on your meter. Soooo if you were like me, and say, getting married and did not want to pull your pump out all the time, you could do your wedding tasting prior to your wedding, count the carbs and save it as a specific bolus that you could access off your meter. Not counting carbs on wedding day? Check. Also perfect for girls who don't want to grope around their tops to bolus on nights out.
• Glucose meter is the download USB. I have 3 and I have lost them all, but I don't lose my meter.
• Infusion Set change alarm. Yep, you can tell it to remind you. Which is perfect for me because I forget and then find out halfway through the day that I have run out of insulin. Whoops.
• The pump clip acts as the battery-opening tool. So you can finally bank all those 10c pieces you keep lying around just for this use.
• You can stop a bolus delivery in progress with a quick stop bolus button during delivery, instead of going through the menu and having to suspend the whole pump and then restarting the whole pump again.

The new 640G, Sensor & meter in real life compared to the brochure

There's probably a bunch more stuff that I didn't get to see.

Which brings us to the CGM. New Smartguard technology. I know they would have done some trials and if I did a Google search I would probably find some statistics to throw at you about how well it really works and all that jazz. But honestly, I'm diabetic, I deal with enough numbers already, I don't want to look at statistics. I just want to look at what it does. Which is to try to stop hypos, before they happen.

So while my current pump has low glucose suspend, which suspends the pump on low glucose, Smartguard has predicted low glucose suspend. Basically it will try to head off the big bad hypo bear before it even attacks by suspending insulin delivery before you get hypo to keep you in a hypobear-free territory. Once your glucose is stable or rising again the insulin pump will resume insulin delivery so you don't get high as a kite either.

It is a good point to note that the transmitter is different - it has a G written on it (and probably is more advanced too) - so you cannot carry over your old transmitter to use with the new system. However I have always gotten my transmitters on great deals, so I wouldn't be surprised if they offered you a deal on sensor start to help with set-up costs.

I should probably leave it there for now and let you all revel in the fact that technology is 1 step closer to the closed-loop/artificial pancreas system.






Disclaimer: Medtronic did not ask me to review or write about the new pump. I just like new technology and wouldn't have left them alone until they let me see the new technology for myself.

Understanding

I was at an event hosted by Diabetes QLD last month, and there was an endocrinologist speaker who made mention a couple of times that people with diabetes were still the same people, but with an external pancreas.

A lot of people in the audience nodded their heads in agreeance at the remark. I always find these remarks confusing and difficult to make sense of. When talking of diabetes and the role it plays in our lives, I don't agree with this statement. Diabetes most definitely has shaped who I am as a person and how I live my life. I think it is foolish and silly to believe that you are still the same person as you were before diagnosis and that diabetes is just a little something you do on the side for shits and gigs.

I believe in giving diabetes the distant respect it deserves. It is more than running an external pancreas, because that external pancreas is being run 24/7. Saying we are simply running an external pancreas detracts from what we deal with on a daily basis.

Diabetes is my silent stalker, following me everywhere I go. 3 years ago, I was stalker-free. There were no hypos and highs lurking in the shadows. I had never had to sit out a meal and watch other people eat, despite being starving because my BGLs were too high. That level of self-control didn't exist for me before diabetes.

There is a fine line between letting diabetes run your life, and between giving it the attention needed.
This line also spills over into my relationships with other people. Which is another reason I didn't like this particular statement.

I learnt fairly quickly once people knew I had Type 1 Diabetes that they didn't actually want to know anything at all about it or how it affected me. My Diabetes is now only discussed without about 3 or 4 non-diabetics.

In the company of most Type Zeros, I stopped treating my diabetes like it had any impact on me. Then one day my older brother told me that 'he didn't feel sorry for me having Type 1 Diabetes because I could still eat whatever I wanted'. But he did 'feel sorry for his friend who was coealiac and a VEGAN BY CHOICE', because 'she can't eat much'.

I don't want pity from anyone for my diabetes. I live well with my diabetes. I just want understanding.

It was glaringly obvious that my brother, unfortunately, had no idea what it was that made having diabetes hard to have. I'm sorry your friend has coeliacs disease, I really am. That must be shitty. But the vegan thing - thats her choice. Comparing my auotimmune disease to her choice was really crappy. Being able to eat what I want is the trade off I get for nights when I wonder if I will wake up alive the next morning. Its the trade off for taking a massive supply bag with me everywhere. Its the trade off the fact that I might go blind one day. I don't know what coeliacs disease causes, but the choice to eat gluten or not is probably not that hard to do. If I inject insulin - the medication that saves my life daily - I am at risk of death by overdose simply because today I am more sensitive to it than I was yesterday. That's what I want people to understand - that its complicated and I don't ever get a break. I am always thinking about how to handle every situation with my diabetes.

I was on a CityCat the other day and for some reason read the safety instructions on where the life vests were located in case of emergency. I had to figure out a diabetes plan. My pump isn't waterproof, so in the hypothetical emergency, I was hoping I would be able to clip it to the top of my life jacket so it would stay above water and still work. I would have to somehow take my juice with me as I swam to shore, because that would be unintentional exercise that I had no time to prepare for, so the likelihood that I would hypo either in the water or on shore would be very high.

That's what diabetes is. No offense meant to my brothers friend who is coeliac and chooses to be vegan, but I don't think that those issues means that she has to worry about medical emergencies if she has to swim unexpectedly across the Brisbane River.

Diabetes is not just something I do on the side when I feel bored. Thats what I want people to understand.

How do I hypo? Let me count the Ways

How do I hypo? Let me count the ways.
I hypo in the 3's and 2's and sometimes 1's as well.

• Mild hypos, where you feel a niggling sense of being over-hot and a little confused, but you can pop a few of the sweet things and move on without so much a second thought
• Moderate hypos
• Giggling hypos, everything is funny
• The hypos when you're too tired to chew your jellybeans so you start choking on them instead
• The hypos caused by shopping. Secretly, I think retailers are ok with this, because hypo brain doesn't care about prices and just buys
• The hypos in the supermarket, where you stand in the vegetable isle looking for the funny vegie that you saw a lady walk past with and you just have to eat it, despite not knowing what it is, and knowing that it probably has negligable carbs.
• The other hypos in the supermarket where you stand in the lolly isle looking at all the choices you have and buying all or none because you can't make up your mind
• The other other hypos in the supermarket when you talk to your food and the supermarket guy hears you
• The hypos where your boyfriend gets frustrated because you take soooo long to chew the jellybean or drink the juice. He usually complains of chest pains afterwards
• The post-coital hypos, when you would rather be cuddling
• The hypos caused by hot showers, where you feel about to pass out due to a combination of hypo and heat, and your 1st instinct is to get dressed incase so whoever comes to your rescue doesn't find you passed out naked
• The hypos that take an hour to come out of
• The hypos where you just keep dropping, so you eat and eat and in the end you want to vomit, which might result in another hypo
• Olympic hypos, caused by seeing the Aussie team compete
• Exercise hypos, which you don't recognize until late, and then you have to hobble home slowly so as not to exasperate it
• The hypos that happen everytime you are running late to something that starts dead-on-time
• The end of the day hypos, which only happen after long days at work when you can't wait to go home. At least you're prepared and have a gameboy hiding in the car for such occasions
• The hypos when you burst into tears and cry about that day 9 years ago when your fish died, and how you really miss him
• Cold weather hypos
• Hot weather hypos
• Post-correction hypos
• Pig-out hypos, when the noms take over and all of a sudden you find yourself surrounded by empty chip and chocolate packets, with jam donut smeared over your forehead
• Multiple hypos