T1 Talk: Managing the Unmanageable

Welcome back to T1 Talk, a series of conversations between myself and Bec of Sweet and Sour Diabetes. We’ve started these conversations with the aim of highlighting how type 1 diabetes impacts two people of a similar age, who were diagnosed at slightly different stages of life. You can learn more about us in our first post here.

This T1 Talk is titled Managing the Unmanageable, and tackles the more technical side of management – from diabetes healthcare professionals to pens, pumps, fingersticks and CGMs. There are two parts to this T1 Talk. The first part is here, and the second part follows over on Bec’s blog at Sweet and Sour Diabetes.

The Australian health system is split into public healthcare and private healthcare. What do you use and why?

Frank: I began seeing a diabetes educator privately last year because I needed someone who had more time for me. The public system pushed me towards self management as soon as I was able, and diabetes education is something I genuinely missed for a few years there in the middle. I wanted someone consistent, someone who I could get to know and who I was able to contact inbetween appointments. I didn’t feel like the diabetes education I received in the hospital was personalised to my needs towards the end.

I see my allied healthcare professionals privately too, simply because it’s more convenient than going to the hospital.

I still see the endocrinologist publicly at the hospital. I feel like the endo is more strictly business. She refers me for all of my important check ups, reviews my hba1c and other pathology reports. I only tend to flag the more “medical” concerns with her. I’m happy seeing my endo publicly, and I don’t feel I could justify the cost of going private based on my experience here.

Bec: Your relationship with your CDE sounds brilliant!

When it comes to health system, I’ve sampled most of it. Currently my diabetes management primarily falls on two people, both private practitioners. My private endocrinologist is basically a whole healthcare team in one. She manages everything a diabetes educator would, as well as her usual endo role. This suits me really well and I feel very well supported in the private system. However, this was hard for me. I strongly believe in public health care being the best quality care. I believe you shouldn’t be able to pay more for better health care, it should just be a given. Unfortunately, the public system (whilst amazing as an early teen) was not the best fit for me as an adult. I see my allied health professionals in the public system, and everyone else privately.

Frank: Wow, the all in one sounds awesome. It sounds similar to endos I’ve read about in American blogs. It does sound expensive, though. 

Bec: It’s not too bad price wise considering it’s only once every 3 months. She’s very supportive by helping out between appointments via email, but I often feel guilty for asking for help when I’m not paying for it.

Describe the relationship you have with your Diabetes Educator and/or endocrinologist.

Frank: I see my diabetes educator once every three months. I’m pretty proactive with my management, so at the moment it’s more than enough. I’ve got her card and I know I’m welcome to call or email inbetween appointments if need be, which is comforting. It’s so good to have someone who dedicates that whole hour to you. She lets me steer the conversation, and I don’t feel pressured into anything I don’t agree with. I love that my educator also explores things like how I feel with my current level of management, or how I handle my diabetes around others. The price I pay is absolutely worth it.

Bec: I’ve always thought your educator sounded amazing. I remember mine at the kids hospital were brilliant. She sounds like she takes a real interest in your health overall, rather than focusing on just one part of diabetes.

My endocrinologist is quite business like and direct, but I like that about her. She understands my approach to my t1 and supports that, but she also tells me when to dial it back and give myself credit for what I AM doing for my management. She’s very contactable outside of the quarterly appointments via email which is very helpful for my management. I find that I’m not as self sufficient as you are Frank, and I need a bit of help working out what to do with my insulin rates. I think this might be because you’re not very self sufficient in the paediatric setting. I understand how everything works but still feel some hesitation making my own rate changes without confirming it with an endo. Plus, with work and uni and constant fluctuations in my sugars I need a helping hand to sort through the mess. So just like your educator, my endo is certainly worth paying for. I just don’t have the brain space to do it alone.

Frank: That’s fantastic. We’re under all this pressure as type 1s to constantly manage well, that along the way I think we lose sight of what an achievement this is in itself. So, I think it’s great that your endo gives you credit where it’s due. Basal rates are really tricky to work out, and obviously you need to allow time for them to kick in and sometimes it takes a lot of trial and error before you get them right. If you feel more comfortable making basal changes under the guidance of your endo, then I say good for you. I’m glad you feel supported in it.

What would you change about the system of healthcare in Australia?

Frank: Stop cutting resources in diabetes clinics! Stop pushing patients away! The number of patients in my diabetes clinic keeps growing, but over the years it seems the resources continue to be stretched thin. The wait time to see a diabetes educator is at least a month, and although I’m supposed to see the endo in 9 months, it will likely be closer to a year. Once upon a time, diabetes clinic was the only resource I relied upon to manage my diabetes. I couldn’t imagine where I would be today if I hadn’t diversified my investment chips into peers, websites, books, social media, private education and allied health professionals.

Bec: Excellent points there. So you see your endo less than once every 3 months? That makes sense considering the role your educator plays in your management. I agree that adult care needs to improve, which is something transition services such as Trapeze (a company I work for) is working toward. I left public health care because it just didn’t fit me or my needs.

The thing I would change is the idea that CGM is a luxury. It certainly is not. I can’t feel my hypos very much, and I tend to drop in my sleep. How anyone can consider an alarm system that keeps you alive a luxury is beyond me. Yes, it’s subsidised for those under 21 upon recommendation from their endo, but t1 has no age cut off. I’ve spent a lot of time contacting politicians to make a change. Just last week I sent a letter to my local member to bring the issue up again. Probably not effective, but at least I’m trying to do something about it.

Frank: I feel so guilty to whinge about CGM considering how lucky we are here in Australia, but yes I wish they were more accessible to me. While I’m so happy for the kids who will get one subsidised, I feel like our government has simply forgotten about the rest of us with type 1. I worry so much about going hypo unaware. I go through tonnes of test strips. I usually set an alarm midway through the night, just to make sure things are sitting steady. Good on you for doing something about it, I still haven’t gotten around to contacting my local MP.

Head on over to Bec’s blog at Sweet and Sour Diabetes to read the second part of this T1 Talk. We delve into pens versus pumps, fingersticks versus CGMs, and the challenges of making changes in our management. Catch you there!

That Time I Almost Ran Out of Insulin

The eighth annual Diabetes Blog Week took place last week, and today I’m jumping in late and answering the Wildcard prompt.

Whether you or your loved one are newly diagnosed or have been dealing with diabetes for a while, you probably realise that things can (and will) go wrong.  But sometimes the things that go wrong aren’t stressful – instead sometimes they are downright funny!  Go ahead and share your Diabetes Blooper – your “I can’t believe I did that” moment – your big “D-oh” – and let’s all have a good laugh together!!

One day, a good couple of years ago, I went on a day trip with my family to Rottnest Island. I’ll say I’d had diabetes for a year or two at the time.

In the beginning, I was just full of attitude when it came to my diabetes. I didn’t want to admit that my condition had changed me. I didn’t want to admit that it made me different. I hated the thought of relying on a meter, insulin or jellybeans as a just-in-case. It felt weak. It felt like I was giving into my condition.

So, you can only imagine how this teenager with attitude reacted to his parents nagging. Whenever we were travelling somewhere distant, Mum and Dad would nag me.

Have you got your stuff?

Frank, I’ve got a bag here if you want to put anything in it.

Have you got all your stuff?

You get the idea. Cue lots of eye rolling and humming over their voices.

So, we were waiting to board this ferry on a day trip to Rottnest Island, when I suddenly realised that I didn’t have much insulin left in my pen. It wasn’t empty empty, but there was probably only enough in there to cover a meal. I think I gasped, or made some sort of expression that made Mum and Dad aware of the situation. Aside from a few remarks of I asked you if you had all of your stuff!, I don’t remember them getting super mad.

We did have some time up our sleeve before we had to be on that ferry. Dad suggested that if I found a Pharmacy and explained my situation, I’d probably be able to get some insulin. Of course, yours truly stubbornly said that he’d be fine and make it last the duration of the day.

I remember stopping at Dome for a coffee when we arrived, and not having anything. After some wandering round, we stopped for some fish and chips at lunchtime. I knew that if I just ate the fish and left the chips, I would be able to get away with minimal insulin. Of course, yours truly decided to eat his chips as well and ride the minimal insulin and high blood sugars out until the end of the day.

I can’t recall my pen actually reaching it’s threshold that day. I do remember checking my blood sugar on the ferry ride home and getting something like 16. I do remember thinking about getting home and being able to give a correction, which makes me think that my insulin pen did run out that day. But then again, perhaps I was just too self conscious to inject a correction shot on the ferry. Who knows…

What I do know, is that this was the silliest and most irresponsible thing I have ever done with my diabetes. So many things could have gone wrong that day. The ferry could have broken down, leaving me stranded on Rottnest Island, or somewhere inbetween without insulin. The fish and chips could have sent me into ketones if I didn’t have the insulin to cover them, with limited medical assistance available to me while I was offshore.

But I also laugh at this story. Whenever someone tells me that they’ve left their insulin at home or done something irresponsible, I usually refer to this story. I remind them that they can’t ever be as irresponsible as I was that day. I hope I make them feel a little bit less guilty.

On a sidenote, seeing this prompt among the Diabetes Blog Week topics has had me thinking of this blooper all week long.

To read other responses to this prompt, click here.

One Year Pumping!

I’ve now officially passed the one year mark since I began using an insulin pump! It was a huge leap of faith at the time, but one that I knew I had to make for the sake of lower and more stable blood sugar levels.

The biggest reason I switched was because I never felt I could get my background insulin dose quite right. Some nights, particularly if I ate more than normal, my Lantus dose wouldn’t be enough to keep my levels steady. Other nights, it would be too much and send me low.

Today, that problem is all but gone. The pump delivers a basal rate of insulin that can be customised to the time of day. I have a higher rate running from 1am to mid morning to offset dawn phenomenon, and a flat rate running through the remainder of the day. Night time basals have been the most challenging, with upward tweaks needed every month or two. But thankfully, the remainder of my basal rates have remained unchanged since I first figured them out last year.

Before I started pumping, I was guesstimating a lot of my insulin doses. I guess I wasn’t very motivated to do otherwise. I wasn’t really thinking too hard about what I was putting into my mouth, and there were a lot of emotionally exhausting highs and lows.

I began diligently counting carbohydrates and weighing my food since starting on the pump, and surprisingly I haven’t slacked off since! With a properly tuned basal rate, insulin just worked when I bolused to cover meals, rather than staying frustratingly high. The pump’s bolus calculator was extremely helpful, and of course having the pump attached to me made bolusing a lot more convenient when out and about.

As anticipated, the pump was a huge learning curve. My biggest hurdle in those first few months was site failures. The 90 degree insets that I was using at the time continually failed on me, causing regular bruising and bleeding on the stomach. I’ll always remember one tumultuous night where I ripped out my infusion site to discover the cannula had kinked on the way in. I eventually switched to the comforts which sit on an angle and have a manual insertion. Today, site failures are rarely an issue. 

The insulin pump is hands down more work than injections. Infusion sites need changing every three days, insulin cartridges need to be refilled, pump lines need to be inspected for air bubbles, batteries need changing, and basal rates need adjusting for activity. You really need to be on top of your game with a pump, and that might not be a commitment everyone is able to make.

The insulin pump definitely gave me a renewed drive to better focus on what was some very lousy diabetes management.

From there, the rest of what I’ve achieved is down to my dedication to observing and learning more about my diabetes and the different variables that affect my blood sugar. So in this regard, I feel that I could just as easily have reached this level of management on Multiple Daily Injections as well.

I can’t express just how much of an investment this was – and I’m not sure I would have been able to do this if I were still at uni or had a more demanding job. But overall I now feel more knowledgeable, equipped and experienced to navigate my way through different scenarios. This level of management no longer feels like such a stretch.

While I don’t talk numbers on this blog, I will share that it took me six months to get my hba1c to where I wanted it to be. When I first hit that target in November, I really felt like I had squeezed everything out of myself to get that number. Today, I’ve been able to comfortably maintain that number – and hopefully even better it going forward.

It’s been a huge year for my diabetes, and one that I feel is definitely worth celebrating.

Happy pump-aversary to me!

(And here’s hoping diabetes is a bit easier on me this coming year)

In an Ideal World

In an ideal world, my meter would produce a magical 5.5 while I’m fasting.

In an ideal world, I could select any spot on my stomach for the placement of an infusion site.

In an ideal world, my blood sugars would respond to potatoes in exactly the same fashion as yoghurt.

In an ideal world, I could fall asleep knowing that my blood sugar will stay stable all through the night.

In an ideal world, I could go for a walk and not worry about my blood sugar dropping.

In an ideal world, I wouldn’t have to worry about rage bolusing every time I’m sick or I’m stressed.

In an ideal world, my levels would steadily rise and then fall back into line after I eat.

In an ideal world, my blood sugar wouldn’t be affected by protein or fat.

In an ideal world, I would be able to feel every oncoming hypo.

In an ideal world, my basal insulin needs would be identical through each hour of the day and the night.

In an ideal world, a diabetes healthcare professional would spend a whole day with me if need be.

In an ideal world, I would have been encouraged to consider technology by my diabetes team.

In an ideal world, everyone who wishes to use an insulin pump would have one.

In an ideal world, a Continuous Glucose Monitor would be subsidised for those who want to use one.

In an ideal world, insulin wouldn’t be so fucking expensive.

In an ideal world, insulin wouldn’t keep getting more fucking expensive.

In an ideal world, access to medication and basic healthcare wouldn’t be determined by my location or income.

In an ideal world, diabetes and pharmaceutical companies would have the best interests of people living with diabetes at heart.

In an ideal world, I would be excited about the artificial pancreas systems hitting the market next year.

In an ideal world, nobody would feel isolated or different for having diabetes.

In an ideal world, I would have perfect management of my diabetes.