T1D

T1 Talk: National Diabetes Week Edition

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We’re back!

My friend Bec of Sweet and Sour Diabetes and I originally designed these conversations as a way to highlight the uniqueness of our experiences with type 1 diabetes, despite both being diagnosed just days apart with only a few years difference in age.

We’ve slacked off a bit with these conversations this year, but we did make up for it with some great conversation while taking in the breathtaking sights of the Parramatta river when we finally met up earlier this year. This is another amazing example of how diabetes has made my world a lot smaller. 

Today, we’re back to dissect all things National Diabetes Week.

The theme of this year’s National Diabetes Week is ‘It’s About Time,’ focussing on knowing the signs and symptoms of both types of diabetes. Would you have benefitted from a greater awareness of the signs and symptoms of type 1 diabetes when you were diagnosed?

Frank: I presented to my doctor with all of the typical symptoms of type 1 diabetes – feeling tired, thirsty, going to the toilet a lot and a looking much thinner. In hindsight, it’s hard to believe that this doctor was unable to recognise any of these symptoms. He diagnosed me with a simple virus, ordering bed rest and lots of hot fluids. Three days later I wound up in hospital vomiting, panting and an extremely rapid heart rate.

Obviously nobody wants to wind up in hospital. Physically, I definitely would have benefitted had that doctor, or the people around me, known those 4 Ts of type 1 diabetes. Mentally, I’m not too sure how I would have handled that diagnosis had I been diagnosed in my doctor’s office. Initially, having type 1 diabetes was nothing compared to having all of those physical symptoms finally relieved.

Bec: It’s so easy for doctors to miss the signs, because they do mimic that of a virus. I agree, for me it would have been a much faster diagnosis if I knew the signs. I was chronically thirsty for such a long time, but I didn’t know that could be a sign of type 1. I delayed going to my doctor for so long that when I eventually got there my blood sugar was in the 40s.

Let’s talk about type 2 diabetes. What do you think people at risk of developing type 2 diabetes need to know?

Frank: As a guy, we tend to only go to the doctors when we’re dying. Overall, people tend to just soldier on when they’re unwell, rather than stopping to look after themselves and recover sooner (our workplaces and cultures could do a lot more to support self care). Furthermore, it’s a lot harder for people with type 2 because the onset is much slower and most will feel quite normal.

Honestly, I think anyone at risk of developing type 2 could minimise that risk by simply staying in touch with their healthcare professionals, maintaining their regular checkups and bloodwork. Just as you and I already do because we live with diabetes.

Bec: I completely agree there is a lot more we could be doing to prompt people to seek medical attention and take care of themselves. People with a known risk of developing Type 2 absolutely need to know the signs, and surround themselves with a good healthcare team as early as possible. This means they have support should the need arise.

I think there also needs to be more education on what Type 2 diabetes is. It’s not all their fault, and I think that assumption and misconception is what delays people seeking medical attention.

What do you think are some of the barriers to people being diagnosed with either forms of diabetes earlier?

Frank: Too many people don’t know the signs and symptoms of type 1 diabetes. Our stories both demonstrate that. It’s scary to still hear stories online of people dying from undiagnosed diabetes today.

I think a lot of people diagnosed with prediabetes or type 2 diabetes don’t have supportive healthcare professionals. Many people are sent home by the doctor being told to lose weight and exercise more, without being referred to an expert such as a Credentialled Diabetes Educator. People will often feel guilty, confused or even in denial while the condition progresses further.

Bec: Type 1 is completely unknown unless you have a personal link to it. I guess all we can do is share our stories to try and combat that. It takes time for diagnosis because we don’t know what we’re looking for, and Type 1 isn’t the first thing that pops into your head.

Type 2 again has so many misconceptions that it puts people off seeking help. Why go in when you’re just going to be told the same thing time and time again- eat well and exercise. There needs to be more support from health professionals, more awareness of the real nature of Type 2 and more compassion from everyone. No one chooses to get a chronic illness.

YpsoPump Lanches In Australia!

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Did you just say that we’re getting a pump?

Yes.

To keep?

Yes. If you’re going to write about it, you need to know all of the facts.

All of the other bloggers were convinced that I must have misunderstood Ypsomed Australia’s General Manager, James Mayjor. I was convinced that perhaps he was just leading me on.

I walked away with the brand new YpsoPump, that officially launched in Australia today. Consumables are listed on the NDSS, meaning that Ypsopumpers will be able to access subsidised supplies just like any other pump.

I believe that a large group of Diabetes Educators will also be coming to Sydney for pump training over the next two days, so if you are thinking of starting on the Ypsopump there’s a good chance you’ll be able to find a trained CDE near you.

So, disclosures. My Life Diabetes Care covered my travel expenses and accommodation in Sydney to attend the launch of the Ypsopump. The team from My Life Diabetes Care kindly gave us a platform for the consumer voice to be heard, as well as hearing all sorts of crazy dinner conversations last night! If that wasn’t generous enough already, I was also given a Ypsopump, some infusion sets, reservoirs, pump cases and an inserter to trial.

So before you read any further, there is a pretty big bias in place. However My Life Diabetes Care have not paid for my time or my words which are, as always, my own.

First up, hooray for new pump choices in Australia!

Secondly, I honestly cannot believe just how sleek and lightweight the Ypsopump is compared to my chunky Animas Vibe that’s looking increasingly like something from the last decade. The My Life Diabetes Care team did highlight that the Ypsopump had been designed to fill the gap in a market filled with complex, medical looking devices.

I was also most impressed to hear about the My Life Diabetes Care portfolio of products, which included things like needles, pen injectors and blood glucose monitoring for people on Multiple Daily Injections and Structured Blood Glucose Monitoring. The tech is not for everyone, and offering choice to consumers is extremely important.

The pump is touch screen, although not a full colour pump. The biggest difference to my late Vibe is that the bolus calculator is not contained in the pump itself, but rather done in the My Life Diabetes app. So, I would calculate my bolus in the app, and then administer the recommended dose using the pump. The pump then connects all of my insulin dosing data to the app via a Bluetooth connection.

Infusion sets come in either steel or teflon, are available in a variety of lengths, and also have the option of manual insertion. Another noticeable difference for me compared to the Animas was the lack of a 45 degree angled cannula.

If you hadn’t noticed my enthusiasm already, I obviously hooked up straight away. It’s still very early to draw any more conclusions, but I will have more to share in the coming weeks. For the time being, I’m more than happy to stow my late Animas Vibe away in my pencil case.

P.S. A photo where I’m actually smiling!

P.P.S. Could we have thought of a better product placement? From left to right: Ashley (@hangrypancreas), Melinda (@melindaseedt1d), Renza (@RenzaS), Rachel (@yoga4diabetes), Me (@FrankSita) and CDE Blogger Extraordinaire Jayne (@JayneEdHealth).

Dear Pancreas

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Dear Pancreas,

Congratulations. You’ve officially been in retirement for eight years today. I hope you’ve enjoyed the seemingly endless stretch of long sleep ins and lazy, effortless days.

If there’s one organ in the human body that I’ve truly come to appreciate since you clocked off for the last time eight years ago, it would have to be you.

You were able to produce just the right amount of insulin for the carbohydrates that I sent your way, and convert those carbs into energy for me to use through the day.

You were able to respond to all of the crazy factors that affected my blood sugars. Things like pizza nights, illness, stress, physical activity and even how well I slept last night!

You were able to produce just the right amount of insulin so that my blood sugar didn’t peak too high, but also didn’t drop dangerously low. You never had to chase the unicorns.

I honestly don’t know how you did that gig all by yourself for 17 years. You didn’t have any resources at your disposal. You didn’t have any healthcare professionals to guide you. You didn’t even have any friends to support you. Yet you never once complained.

Being a pancreas is in no way normal. There’s no one else quite like you. The nature of your job can feel rather isolating. Yet you held your head up high. You stood tall. You never once showed a single shred of emotion. You never burned out.

You’ve definitely pushed me far from my comfort zone. I’ve met new people, I’ve visited new places. Your retirement has definitely instilled a great deal more confidence in me than I’d ever once imagined.

Dare I say I’ve taken quite an interest in you. I read about you. I talk about you. I write about you, frequently. I’ve even dedicated a whole blog to your demise. Some might say I’m obsessed with you.

You’ve left me with tonnes of additional duties since you departed the office eight years ago. I’m ashamed to admit that I don’t do the job half as well as you once did. I have to do the job of a human being as well, you know. I do try my best, you know, but somehow I don’t think I’ll ever be able to fill your shoes.

So, in case you had forgotten, today also happens to be my eighth diaversary. I’m not sure if you’ve been out shopping yet, but if you wanted to get me something really nice to mark the occasion, you could simply get up off the couch and come out of retirement.

I know I can’t offer you much, but I promise to feed you, take care of you and provide a roof over your head. I’ll never for a second take your job for granted again.

So, what do you say?

With all my love,

Frank

Breaking Up With My Health Insurer.

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When a loyal customer informs you that they will be taking their business elsewhere for sake of better value for money, you would think that the appropriate response would be to do everything possible to convince you to stay.

When I walked into my local HBF branch on Friday to do just that, the member service advisor (who actually had a connection to diabetes) simply told me that she completely understood.

I’d be lying if I said that I don’t feel a little stung by the health insurer that my family have been loyal to for as long as I can remember. I can remember impatiently waiting at the HBF branch at Karrinyup on many occasions as a kid when my parents had claims issues to deal with. When my Mum and Dad brought me to HBF after I first commenced full time work to take out a policy of my own, I did not even think about choosing anyone else to look after my health.

I genuinely liked that HBF were a West Australian business, with a family feel to it. There were plenty of local branches nearby where I could go and talk to an actual person, rather than deal with a matter over the phone with the call centre on the East Coast. We haven’t ever had a problem with them over the years.

However along with insulin pumps, HBF no longer covers dialysis, cochlear implants and surgical weight loss procedures on basic tier hospital policies. Meanwhile, I can receive claims or discounts for ‘wellness’ products and services which have no value to me on my health cover.

I find it ridiculous that I am forced to have my health insurance cover packaged with other products and services that I have no use for. Admittedly, my new health insurer is no different either. In an ideal world I would go into a branch, tell the insurer what I need coverage for, and have a package that is tailored to my own individual needs.

Over the four year lifespan of my insulin pump, my current premiums (inclusive of the 25% rebate contributed by the federal government) have covered roughly 60% of its cost. Not to mention that many people would not be upgrading their insulin pumps as soon as the four year warranty period is up. Moreso at the moment as we are waiting patiently for the new pump options to hit our shores (watch this space).

Of all people with diabetes, those with type 1 who are the predominant users of insulin pump therapy represent only 11%. Of those 11%, I believe that insulin pumpers would be in the minority. They weren’t encouraged or talked about by my own healthcare professionals. I only came to know more about them from talking to other people with diabetes – and that, in itself, was a massive step for me to make.

I have now broken up with HBF, a decision which will save me at least $550 per year. Diabetes is one awfully expensive condition that I did not ask to get, and I can think of hundreds of other things that I would much rather put that money towards each year.

But for now, I will happily divert that extra $550 per year toward things like insulin pump consumables, batteries, test strips, hypo treatments and insulin. 

As Elaine would say, “you just lost a customer!”

(Clearly, you can tell that I’ve been binging on far too much Seinfeld at the moment…)

Guest Post: Behind the Scenes of Diabetes Research

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Today I’m handing over the reins to Caroline Rudnicka, a diabetes research officer who also lives with type 1. I first connected with Caroline after hearing her speak at a local event hosted by Diabetes Research Western Australia, and today she shares with me a little about her connection to diabetes and an upcoming event to support diabetes research. 

I must admit that I don’t think too often about an end game when it comes to diabetes, so I really appreciate hearing from people like Caroline and the team at Diabetes Research WA who share such a passion for research. 

***

Frank: Hi Caroline. Can you tell us a little about your connection to diabetes? 

Caroline: Hi Frank and thank you for the invitation to guest blog on Type 1 Writes.

I was diagnosed with Type 1 Diabetes in 1989 while my parents and I were holidaying in Europe. My diagnosis was a horrible shock for my parents, who had mistakenly attributed my mood swings, weight loss and lethargy down to my young age and traveling. Furthermore, with no family history of T1D, my ‘spontaneous’ diagnosis really astounded my parents, who were previously completely unaware of the condition.

My diagnosis drove me to pursue a T1D-orientated honors project through the University of Western Australia. Currently, I work for Royal Perth Hospital as a research officer, and I have been fortunate to work in a lab group, supervised by Professor Vance Matthews, that is dedicated to type 2 diabetes research (although we are starting to investigate T1D complications too).

I feel lucky to be in the position where my work environment encourages me to constantly reflect on the potential mechanisms which promote diabetes development, and provides me with unlimited access to read high quality diabetes journals.

Frank: We first connected through your work with Diabetes Research WA. Can you tell us a little about that? 

Caroline: It was actually through my boss Vance that I was introduced to Sherl Westlund and Nat Caudle from Diabetes Research WA (DRWA) in late 2017. At the time, Sherl and her great team were organising their information night, “Diabetes, where is the cure?” when Sherl contacted me and asked me if I would like to present a talk about my experiences with T1D and diabetes research.

I must admit, I was initially apprehensive as I wasn’t certain that the audience would find me or my experiences very engaging. I was always under the impression that only diabetics cared about diabetes. However, having worked with Vance previously on a DRWA funded project, I felt flattered to do something for DRWA, a local organisation that strongly supports diabetes research. Hence I accepted their invitation.

I was surprised to receive a lot of positive feedback following my talk that night, and I was humbled that the experiences which I discussed managed to move many people in the audience. When I was driving home that night with my husband, he commented that my talk really opened his eyes to what I go through living with T1D, and this is despite the fact that we had been living together for years!

This made me realise the importance of openly discussing T1D and sharing experiences, to link T1D patients with each other and non-diabetics to raise diabetes awareness. As such, I was delighted to act as that link between DRWA and their audience on that particular night, and I hope to do more events with DRWA in future.

Frank: Your husband Joey is going to be participating in a charity fundraiser for Diabetes Research WA later this month. Could you tell us a little about the event, and how we could get involved? 

Caroline: My husband Joey is literally putting his body on the line as he participates in the “100 Fights in 100 Minutes Charity Benefit” on April 28th.

This is an event being hosted by the fantastic owners Noah Greenstone and Ron Amram from Leederville’s Combat Arts Institute of Australia (CAIA), a self defence facility where my husband trains. Noah and Ron are the masters of technique, and it is going to be so enjoyable watching all the competitors on the day.

The charity benefit is essentially a test of endurance, as each competitor participates in 100 friendly rounds of sparring (kick boxing or jiu jitsu) at one minute long each. Funds are raised by sponsoring a fighter for each round they are able to fight. The Institute is hoping to reach its $6,000 target through sponsorship of the fighters.

My husband, being previously motivated by my DRWA talk to support diabetes research, liaised with the owners of CAIA, and I am extremely grateful to Noah and Ron for selecting DRWA as the beneficiary for this fundraiser.

Their decision really excites me, because diabetes research relies on community support to continue. Working in a diabetes research lab, I can see that funds are necessary to promote and develop scientific ideas, and donations from the community are the key to unlock the dream of a diabetes cure into a reality.

So please sponsor my husband Joey Balczer as he literally “fights for a diabetes cure” using this link: http://combatartsinstitute.com.au/100fights2018sponsors/view/form

The event is free to watch, and there will be delicious food trucks on site, so I encourage everybody to attend.

What:
100 Fights in 100 Minutes – Charity Benefit for Diabetes Research WA
Hosted by Combat Arts Institute of Australia

When:
Saturday April 28, 2018, 5.30pm

Where:
341 Oxford Street
Leederville WA 6007

http://combatartsinstitute.com.au/component/k2/item/76-100-fights-100-minutes-2018-perth

Frank: Do you see a cure for type 1 diabetes coming from a particular form of diabetes research? 

Simply answered, the end goal as a diabetes researcher is to find the cure, and as a diabetes patient it is to be cured.

When I was diagnosed in 1989, the Dr told my family that a cure was only “10-15 years away”. As a T1D patient, such claims anger and frustrate me because almost 30 years later, I still have T1D.

However as a diabetes researcher, I see what goes on behind the scenes- the long hours that are put in, the numerous experiments, the lack of funds, government imposed restrictions, the endless paperwork, lengthy clinical trials, etc. Therefore I can appreciate that finding a diabetes cure is a long, tedious, difficult and frustrating process. It literally takes years and years to turn a “lab bench idea” into a clinical trial, and then there is no guarantee that the initial idea will eventuate into a marketable good or service.

It is also crucial to highlight that in order to cure something, we need to fundamentally understand it better. Through research, our grasp on diabetes is constantly improving (just not always at the pace us diabetes patients would like). Incidentally, as technology advances, this will provide researchers and clinicians better ways to test, analyze and understand diabetes, and to use that diabetes knowledge to formulate potential cures.

Consequently, I dont classify one area of research as being more promising than another. It is important to distinguish that given the complexity of diabetes, including multiple environmental and genetic factors, age of diagnosis, and length of disease duration, a future T1D cure may take on many forms. I personally do not believe it will be a “one solution fits all” scenario, but rather, a cure will need to be somewhat personalised, similarly to how we approach current diabetes management options. What works for one person, may not be suitable for another.

I would like to add that finding a way to prevent T1D from developing is as important as ridding the condition entirely once it has developed and I think that this is also an exciting area of diabetes to explore.

Of course, it is difficult to convey these notions with diabetic patients who do not work in the scientific or medical industry, and are exasperated that “nothing is being done”.

Believe me readers, something is definitely being done. Don’t lose hope.