Author: Frank

First Week On The Insulin Pump

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The last two weeks have been an absolute blur. This month has been diabetes overload. The new devices that are attached to me are a big reminder of that, although not necessarily in a bad way. My desk is an absolute mess of cable cords, information booklets, carb counting books and test strip containers. Every time I clean it up, I end up needing to pull the stuff out again.

I’ve been asked so many times about how I was feeling in the lead up to insulin pump day. Yet the reality didn’t actually set in until I was at diabetes clinic last Monday morning. Some of the other questions around it, however, have been rather amusing.

So when do you go in for your surgery?

Is it like a computer that’s strapped to your back?

It’ll be quite heavy. Will you still be right to work here?

Does the insulin go in through an IV line?

And my favourite, courtesy of one of my Aunts:

They’re going to have to cut you open! They’re going to have to cut you open!

It’s so bloody hard to explain what it actually is, so I’m really looking forward to being able to pull out my pump and show everyone.

Sidenote: My favourite diabetes hack from Friday’s Diabetes Blog Week prompt goes to Laddie at Test Guess and Go – objects photograph better on colours.

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The biggest misconception here, is that people thought I was taking time off for a physical recovery after the insulin pump. The truth is, it’s been more of a mental one. I’ve slept over almost every alarm that I’ve set for myself during the night to test, simply because my brain is fried from diabetes. Even harder, is the fact that most people won’t see the huge learning curve of these initial weeks.

Every night this week, I’ve been putting my overnight basal insulin rate to the test. Seeing if it will hold my BGLs steady, drop me further, or make me spike. Every morning, I’ve plugged my devices into the computer and analysed the results. Having access to such detailed data through my FreeStyle Libre (I received a reader and two sensors free of charge – further disclosures are here) has been helpful in tracking the movement of my BGLs overnight, and making changes to my basal insulin rate. It’s also a challenge not to respond to those annoying trend arrows and micromanage data. 

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Having both my diabetes educator, and my family to talk it through with each day has been a huge support. I’ve sorely missed my educator’s guiding hand over the weekend, and I hope that I haven’t veered too far away from the road in my decision making. Being home to navigate my way through it this past week has also been a massive relief. But I’m also a little overwhelmed at the new factors that will be thrown into the mix when I head back to work tomorrow.

This past week has taken enormous patience. I’ve hardly even made a dent in my homework. Once my overnight basal rate holds me steady, I’ll move onto testing my morning basal insulin rate, where I’ll have to deal with morning cortisol glucose dumps. Then the afternoon, and then the evening. Then fine tune Insulin to Carbohydrate ratios, and correction ratios.

It’s hard to remind myself that this will take time to get right.

Amongst all of this, it was hard to believe that it was also my birthday yesterday. 

It was such a relief to have that guidance from the pump in bolussing insulin for my birthday dinner, rather than my lazy guesstimates. It was so nice to simply pull out the pump from my pocket, and push a few buttons to bolus for the cake. 

The pump is one of the greatest birthday gifts I could have wished for this year. It’s a brand new chapter for my diabetes, and I’m confident the change will be a positive one.

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Diabetes Hacks

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It’s Day 5 of Diabetes Blog Week, and today’s prompt is titled “Tips and Tricks.” Inspired by an OzDOC chat a few weeks ago, I thought I’d go with “Diabetes Hacks.” Anyhow, here is today’s prompt:

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 used to live by the motto that “nothing will ever happen to me.” Historically, I’ve packed as lightly as possible when heading out with diabetes. My meter has often been replaced with a blind guess. A wallet will subsidise hypo treatments on the road. Meanwhile, my Medic Alert bracelet spends hardly any time on my hand.

The biggest problem for me, is trying to figure out where to put it all. I hate carrying crap around, especially when there’s a good chance I won’t even need it. I hate bulky things in my pockets, weighing my shorts down. I can’t stand overstuffed jeans, or having things in my hands. The same policy applies to anything not related to diabetes.

Slowly but surely, I do feel that I am becoming more organised. I am starting to think more long term, and the possibility of the unexpected happening. In fact, I’m not even sure that I recognise myself anymore!

During insulin pump training on Tuesday (posts to come next week), my diabetes educator raised the idea of having a backup plan. Coming off basic injections, I have been quite worried about being so reliant on one device to do everything for me. I’ve been mulling over scenarios in my head where I might have to inject Lantus and go back to Multiple Daily Injections temporarily.

Traditional me would have nodded and shrugged the idea off. Instead, I reached over to my bag and pulled out my contingency pack in front of Gwen. I had a contingency pack after one day with an insulin pump! It was one of my most proud, and so-unlike-me diabetes moments. It’s nice to know that backup is there.

My favourite hack, as Ashley witnessed first hand last week, are my test strip containers. Taking the time to count out skittles in the midst of a hypo has been frustrating over the years. I often lose count of whether I’ve eaten 5 skittles or 7, and am left guessing. Other times, I am just desperate to cram the sugar into my mouth.


Nowadays, I have collections of empty test strip containers ready to go on my desk. I fill them with 10 skittles each, and I know that’s 11g of carbs per container. They’re super easy to carry around with me when I’m heading out, and saves me the pain of bringing the whole bag with me. I can stash them in my desk drawer, my bag and in my locker at work. If I’m struck down by a hypo, I can easily just shove a whole container into my mouth without even thinking about it. They also worked nicely as sharps containers in Sydney last week!

My favourite item of clothing, without a doubt, is my Lost Highway jacket. It’s got plenty of pockets where I can easily cloak my insulin pens, meter, hypo containers, as well as all of my non-diabetes stuff. Even during the Summer, I’m guilty of brining it along to a party and holding it in my hand the whole time! Sadly, it’s in the wash today, so this old Instagram photo will have to do.

https://www.instagram.com/p/80lsx1A_bu/?taken-by=franksita

 

To read other posts related to today’s prompt, click here.

The Healthcare Experience

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It’s Day 4 of Diabetes Blog Week, and so far I’ve managed to make my way through all of Monday and Tuesday’s posts, and comment on a fair chunk of them. Today it’s time to tackle the topic I’m most excited about. Here is today’s prompt:

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!

I’m pretty grateful that I live with diabetes in Australia. I attend a diabetes clinic in a public hospital which is completely free of charge, and hooks me up with any related service I need. Private Health Insurance covers hospital care, and the cost of my brand new $9,000 insulin pump (posts to come next week). Diabetes consumables and insulin are heavily subsidised by the Australian government. All in all, I never need to worry about how I will make ends meet with diabetes here in Australia.


My biggest frustration, however, is that I feel my healthcare professionals don’t often have enough time for me. I was diagnosed as a young adult, which meant that getting a grasp on diabetes education and self management was a lot easier. I was quickly weaned off diabetes education as soon as I could manage on my own. My clinic has a long patient list and waiting times for appointments can often span months. My chart probably looks a lot better compared to most of the other patients in the clinic, which means I am pushed out of the endocrinologist’s office as quickly as possible.

But what about if I’m not happy? What if I don’t want to settle for satisfactory? What if I want to do better with my diabetes? What if I have the potential to do better?

Over the past year or so, I’ve really had to learn to stand up for myself and what I want from my healthcare team. During a time of burnout last year, I had to ring up and chase appointment cancellation slots down at the clinic. I had to do the research, attend the information evenings and tell my diabetes educator that I wanted to go onto an insulin pump. I had to make my goal clear in front of my healthcare team, one that was beyond the “satisfactory” point where I was at.

Nobody else was going to help me, even if there was a benefit to my health. There is simply no time for me in a busy diabetes clinic with a high volume of patients. It’s great that I am a “switched on” patient, but the sad reality is that not every person with diabetes is. Not every person is in a place where they are able to speak up for what they want. It can be hard just to accept and become comfortable with this condition, alone.

One person I would like to praise is my diabetes educator. I know that she is under the pump. Yesterday, she told me that she is under pressure to cut one hour education sessions down to 30 minutes. Yet she always makes herself available to me outside of appointments by both phone and e-mail.

I’m still in uncertain territory at the moment with the insulin pump. I’m testing my basal insulin rates overnight, and checking to see whether they keep my glucose levels steady or not. Being able to talk the adjustments through with Gwen over the phone and by e-mail these past few days is a big relief. I haven’t leaned on this kind of support as much in the past, but I know that I intend on doing so in the next few months.

Technology is also amazing. When I was first diagnosed six years ago, I was given a meter and a logbook. Today I have meters that log my blood sugar levels and calculate my insulin doses. I have devices like the Insulinx and the FreeStyle Libre which are computer friendly. I am using the amazing Diasend software, that allows me to upload the data from my insulin pump, glucose meter and FreeStyle Libre into one place. Gwen can instantly see the reports on the other end.

My biggest takeaway here, is to stand up for what you want. Don’t be afraid to lean on your healthcare team, but also the people around you who can encourage you to do so. Your health is so worth it.

To read other posts related to today’s prompt, click here.

Language Matters

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Today is Day 3 of Diabetes Blog Week, an annual event in the diabetes online community created by Karen at BitterSweet Diabetes. Here is today’s prompt:

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

My guess is that everyone will be talking about “diabetic” versus “person with diabetes” today. I wrote about this a few weeks ago right here. In short, I feel that the word “diabetic” is a label, while the word diabetes describes me and empowers me.

Today, I want to talk about the power of Language. I believe that Language has the power to influence how diabetes is talked about in the public domain.

At Diabetes Exchange in Sydney last week, we spoke about the importance of credible diabetes reporting. There are so many people and groups on social media who are passionate about their cause – whether it be diabetes technology, diabetes diets, government funding or anything inbetween. Pick a cause, and you can probably find a tribe. I think that’s fantastic. I love that we have so much passion in our community.

Yet many of these messages aren’t conveyed in a credible or sensible manner. I come across many groups and comments on social media sharing sensationalised messages. These people are so passionate about their cause, that they will happily skew the truth in order to receive attention. These messages are often inaccurate, generate fear, and don’t really do anything to support people with diabetes.

However the sad reality is that the wider media eat up these sensationalised stories. The device that stops her from going unconscious overnight. The suffering boy who just saved his life with a shot of insulin. You get my drift.

These stories don’t really give a good representation of people with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in some cases, that a person with diabetes could drop dead at any given moment! I don’t feel that it gives us a lot of hope.

Yet the success stories don’t receive enough attention. Where are all the people who are living relatively normal, happy lives with diabetes? Positivity can be a wonderful motivator for health, and I feel it’s sorely overlooked.

My point being, it starts with us. With you and with me. We have the power to shape how diabetes is talked about in the media and in the public domain. To borrow from Renza, Language Matters.

To read other posts related to today’s prompt, click here.

The Other Half of Diabetes

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Today is day 2 of Diabetes Blog Week, an annual event in the diabetes community created by Karen at BitterSweet Diabetes. Here is today’s prompt:

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!)

Being diagnosed with diabetes as a young adult has presented it’s own unique challenges. I had already lived a significant portion of my life without it, which I am extremely grateful for. However, everyone around me knew me without diabetes. It wasn’t just automatically there, which made acknowledging my diabetes publicly a very difficult task. It essentially entailed a new conversation and fielding a whole lot of questions. It’s a risk, and sadly some people react insensitively. Even today, many people still don’t know, or remember that I live with diabetes.

I was diagnosed at an age where I wanted to manage my diabetes myself. I didn’t want to burden others around me with my diabetes. I was, and still am extremely stubborn. The more time that passed, the more I closed myself off. I didn’t talk about diabetes. I struggled to even acknowledge what was going on in my head. I distinctly recall moments where I was struggling with the frequency of my hypos. I was slamming my fists into the wall, and then getting emotional and comfort eating my way well out of hypo territory behind a closed door.

I was very self conscious around my diabetes. I wanted to be seen as normally as possible. I didn’t want to be seen as the sick, “diabetic” kid. I didn’t want people to see me managing my diabetes and pity me. There were times where I didn’t want to test my blood sugar levels in front of others. I’m still very self conscious about injecting insulin in front of others.

Beginning this blog 18 months ago was a big step out of my diabetes comfort zone. I quietly began following other people with diabetes online. I nervously stuck my head into OzDOC chats. I began sharing more about my diabetes than I ever acknowledged in my own life.

Much to my surprise, I began genuinely connecting with other people online. I became extremely interested in diabetes. I became far more motivated around my own management, and standing up for what I want from my healthcare team. I entered the pumping world yesterday, as a result of a decision that I made happen myself. I had the privilege of travelling to Sydney last week, and making some online to in real life connections.

Today, I am still fiercely independent in managing my diabetes. The specifics around my diabetes is still a very personal topic. I don’t often talk about what’s going on with my numbers, my food, and other individual elements of my day to day management. I set the agenda, and my family respects that.

I am, however, more motivated to talk about my diabetes in a broader context. About what I expect from my healthcare team. Elements of my management that I’m hoping to make changes to, or do better. Talking about how diabetes makes me feel. Commenting on the news, and the politics around diabetes. My blog posts are often the subject of dinner table conversations, too!

Today, I am not so afraid of talking about my diabetes in front of others. I comfortably bring it up when it adds value to a conversation. I feel much more confident in the way that I express myself around my diabetes, that I no longer feel so conscious or so pitied. I feel that I am so much more of a “switched on” patient, and in a much better place with both my physical and emotional health.


I would say take a step out of your comfort zone. Take an interest in diabetes. Connect with others. You don’t have to do it all at once. Set some boundaries you are comfortable with.

I feel that the progress I have made with my diabetes over these past 18 months has been so worth it.

To read other posts related to today’s prompt, click here.