Diabetes Musings

T1 Talk: Back To The Beginning

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Today’s post begins a series of conversations between myself and Bec of Sweet and Sour Diabetes. We first connected through our blogs, and our mutual friend type 1 diabetes. Despite our three year age difference, we have discovered that we both have quite a lot in common. Starting with the fact that we were both diagnosed with type 1 diabetes in May 2010, only a couple of days apart. 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. Although this is our own unique series of T1 Talks, we would like to give credit to Laddie and Kate for the inspiration from their Type 1/Type 2 Conversations series.

Our first T1 Talk is titled Back to the Beginning. This isn’t your typical diagnosis story.  We aren’t specifically revisiting diagnosis, DKA, or the signs and symptoms of type 1. I guess we’re focussing more on the people who were dealing with a type 1 diagnosis thrown into their lives, and some of the issues they faced.

There are two parts to this T1 Talk. The first half is right here in this blog post. The second half follows over on Bec’s blog, so make sure you head on over once you’re finished here.

Tell us a little about yourself

Frank: I’m Frank from Perth, the most boring city in Western Australia the world. My first foray into the diabetes community was when I began writing my blog Type 1 Writes in 2015, and diabetes has become my passion ever since. Some relatively uninteresting things about me: I’ve been a university graduate for four years. I have a degree in Marketing and Public Relations, but the job market in Australia is a tough one to crack. I hate exercise, but somehow I ended up working in a Warehouse. I love drinking coffee, and I would happily eat Toast at any time of the day. I prefer TV shows over movies. I like music from Good Charlotte and The Fray. My most frequently used word would be “honestly.”

 

Bec: I’m Bec from Sydney, Australia. For the past few years I’ve been part of the diabetes online community through my blog Sweet and Sour, and now as a reasonably regular contributor to OzDOC on twitter. Outside of my online diabetes life I am a student speech pathologist commencing my final year of study. I’m a pianist, 80’s music and film connoisseur, Harry Potter enthusiast, and TV series binge watcher. I also enjoy reminding Frank of Sydney’s superiority based solely on our fancy coat hanger. I do approve of your music choice Frank, so you’ve got that going for you.

Frank: You’re so lucky. You can just climb the bridge or walk over and have a Cannoli at Rossini’s on the Harbour whenever you feel like it!

Bec: I still haven’t climbed that thing! One day. When I’m no longer a poor uni student.

Frank: You haven’t climbed it? I’ve done it twice and I don’t even live there…

How did you first connect with each other?

Frank: I remember leaving a comment on Bec’s blog on the final day of Diabetes Blog Week in 2015. Most of the blogs I had read at the time were from the US and abroad, so obviously the first thing I noticed was that she was an Aussie! Over the year she left a few comments on my blog, and eventually sent me an e-mail. I’m still not sure whether my reply actually went through, because I later discovered that my outgoing messages weren’t reaching their recipients. I think we connected a lot more once we became Facebook friends, and Bec began joining in weekly OzDOC chats on Twitter (you’re welcome).

Bec: Thankfully I wasn’t shunned by Frank’s dodgy email account; your reply did work. I have no idea when I found Frank’s blog but I’m going to say it was probably around the same time. I had the same response “Look! Another Aussie in the DOC!”. Plus he had a cool graphic/logo for his blog so looked ultra-professional. I became a regular reader/blog stalker and we had a comment exchange happening across our posts. I like to think we’ve become friends over the years. You can be smug about getting me into OzDOC, but I think the real privilege is having access to my bad jokes/film references/cat gifs on a regular basis. You’re welcome.

Tell us a little about what was happening in your life when you were diagnosed?

Frank: I’m one of the privileged few who got to join the diagnosed-a-few-weeks-before-turning-18 club. I was in the midst of a big transitional change in my life. I had newfound independence. I was midway into my first semester at uni, enthusiastically working my first real job, and had only recently gotten my license. It was very “different” to going to school, having the same routine and seeing the same people every day. I also remember spending a lot of time in front of the computer working on uni assignments, which are very different to high school ones! I’m not one of those people who can simply belt out an essay the night before it’s due.

Bec: I can’t imagine being diagnosed at that time. That’s a major transition stage to have T1 thrown in the mix. I was 14 when I was diagnosed in Year 9 at school. The most exciting thing going for me was being a week from getting my braces off. I remember it being a stressful time. I still have my school diary from 2010 and it listed a lot of half-yearly exams and assignments due shortly after my diagnosis. I was busy at school, taking piano lessons, choir, and going to weekly Scout meetings. Quite a bit for a 14-year-old.

Frank: Well, you had to deal with that while you were in High School. And you were doing a lot more than I was at 14. When I think about the amount of time I spent on Homework and exam study, I couldn’t imagine having to deal with type 1 on top of it. Although, it would have been a good excuse to get out of Phys Ed class…

Frank: Your stalking obviously worked, because we’re now diabuddies. But I think the real privilege is being in the circle of cool kids with a Twitter account. You’re welcome.

How much did you know about diabetes prior to being diagnosed?

Frank: I always thought diabetes was caused by being unhealthy. Poor diet, lack of exercise, blah blah blah. I couldn’t distinguish between types, either. I recall the type 1 in my Primary School writing about having to give herself needles in the annual school newspaper. I simply cringed at this thought, and suddenly felt very conscious about the junk food I was eating after school. Meanwhile the type 1 in my High School came as a total shock. He played heaps of sport. I remember he had an insulin pump, and often told our Maths teacher that he had to leave to get some sugar. I think he was just wanted to get out of class…

Bec: Haha dodgy type 1 excuses. I don’t know how he did it, I felt guilty for using it to get out of sport once!

I knew precious little too. I saw 1 person with type 1 in primary school and all I knew was that she could eat jellybeans in class sometimes and had injections. Back then I split type 1 and type 2 into “the needle type” and “the food type”. The morning I was taken to hospital I kept asking my Mum whether I had “the needle type”. She (not knowing anything about it either) believed I didn’t. Woops…

She raided our cupboards that morning throwing out junk food because she didn’t know what else to do. I remember mourning the Milo (thankfully I got it back once we realised excess Milo consumption did not cause my diabetes or anyone else’s for that matter).

Frank: Your Mum throwing away the Milo…hahaha! Seems like you had a greater insight into diabetes than I did. I never genuinely considered what having diabetes meant, or what those people in school had to do to manage.

Bec: She was on a mission! I didn’t consider what they had to manage in any way. I look back and wonder if I said something stupid at some point as a kid. Probably not, was a bit of a wallflower.

How did you react to learning that you had diabetes?

Frank: When I learned I had diabetes in the midst of DKA, I was devastated. I thought I had done something wrong. I asked my Dad if I would have it forever.

I’m usually more of a glass half empty kind of person. But post DKA, I was so relieved to have saliva back in my mouth and my energy back, that I wasn’t really pissed off about having diabetes at all! The extra attention in the beginning was kind of nice, too…

I remember telling people that once my diabetes was controlled, I wouldn’t have to check my blood sugar so often. Ha ha ha!

Bec: The feeling of having done something wrong is a hard one, I’m glad you got through that. I remember that feeling of not being thirsty anymore. It was the greatest thing ever.

I love the blood checking hypothesis. If only!

By all appearances I handled it remarkably well. I was very attentive and wanted to understand everything about it. I felt a little relieved that I could name what was happening to me.

A few days post diagnosis I remember going into my parent’s room one evening and asking them “why me?” Other than that, I was firmly denying any emotion about it because I was too busy learning how to live with it. In hindsight, that’s not the best way to go about it, and it was followed by a pretty deep denial. Oddly, despite the denial, I was an “over-manager”. I just held on to the idea that it was temporary/an inaccurate diagnosis for a good year or so. Almost 7 years on and I’m only recently starting to properly react to it, and that’s okay.

Frank: I’m so touched hearing your “why me” story. I’m instantly reminded of our age difference, and I can’t imagine how you must have felt dealing with it 3 years earlier than I did. Also, you’re not alone. Seven years in and I’ve only just started to actively manage it in the past year.

Bec: Now now, you’re not that much older thank you. But yes, at the time of diagnosis we were definitely in different stages. I was still more naïve kid than adult. I guess that changed pretty fast once I was diagnosed. You took more ownership of it by asking what you had done wrong. Nothing, of course.

What were you told by your healthcare professionals when you were diagnosed?

Frank: That I would be able to live a normal life. Which my parents constantly reinforced to me whenever I made a comment about having a leg chopped off. There’ll definitely be a cure in your lifetime, my Dad constantly remarked.

My first diabetes educator was amazing. She pulled out her famous diagram of the mouth, and the path that food takes when it enters the body and is eventually transformed into glucose to supply the body with energy (I hope I got that right, G). She remarked that I was quite a spontaneous eater, and suggested that most people have a cycle of 10-15 meals that they eat to help better take note of insulin needs. Mum and I still laugh about that idea to this very day…

Unfortunately, I also had an encounter with an endo who told me I had very poor control just months after being diagnosed. Said educator went in and stuck up for me, and made sure that I was never scheduled to see him again on a clinic day. Thanks, G.

Bec: Oh I get in so much trouble for the dark humour/sarcasm, but I’m glad you’ve been supported by your family and G. G is an absolute legend and that endo needed to read their file notes a little more carefully.

My diagnosis confused me at first because it took a while for someone to tell me what it was. An endocrinologist (not mine) came into Emergency and introduced herself. I had no idea what an endocrinologist was. She told us a diabetes educator would be coming down to take me to the hospital’s “Diabetes Day Care”. Ah… so I’m diabetic?

Once I found out I had type 1, I was told there is no cure, but there are remarkable advancements being made in treatment and technology. I’m also pretty sure the cure in ten years was mentioned as a possibility. Most importantly I was told I could live a normal life. I agree with this, but it’s a new normal.

A few weeks afterwards I was told that I “definitely have type 1” after the antibodies test. This was the trigger for my denial. What did they mean? There was a question about it? They can get that wrong? The educators had no idea that one phrase set off a conviction that my diagnosis would change to something “better” in time.

Frank: Wow, such different experiences. I wasn’t “all there” the first 24 hours of having diabetes. I’m not sure how I would have reacted if I had to start learning about diabetes that day.

Bec: I think whilst my sugar was insanely high my ketones were actually not horrific (3.6). I was lucky in that sense. So I was pretty good to go once they injected me with insulin. I can’t imagine NOT learning about it on the first day. I was an information addict!

The second half of this T1 Talk follows on Bec’s blog. We’ll delve into how we each handled type 1 in the initial time after our diagnosis, and some of the initial challenges that we each faced. Head on over to Bec’s blog to read the second half of our conversation here.

P.S. Thanks for floating this idea, Bec, and for being an awesome co-host and friend.

NDSS Debacle

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Late last week, I finally received the infusion sets for my insulin pump, that I had been chasing down since December. I was down to my last box, and had even resorted to reusing the sets to make sure they lasted.

I didn’t really have much of a stockpile of sets at home. I’ve been pretty mindful of my ordering, particularly since I had changed infusion sets only a few months ago. Plus, we’ve been told not to over order in ‘fear’ of the recent changes to the delivery of NDSS products. My local diabetes orgs and diabetes educator have told me that there are no issues affecting supply.

This debacle began when I placed a regular order for my diabetes consumables on December 12 through my local Pharmacy. I figured that this order would arrive in time to cover me through Christmas and New Year. When my order arrived only partially filled, I was told that my infusion sets were on back order – but that I would still get them. I waited a week. Two weeks. I was continually reassured that the stock was still coming my way, and that the hold up was due to the NDSS changes.

When the New Year rolled around, I went back and had a chat with my Pharmacy. After a few phone calls, I was told that the manufacturer claimed that it had delivered the stock to my Pharmacy’s wholesaler. Meanwhile, the wholesaler claimed that it hasn’t received the stock. Who do you believe? Who takes responsibility?

I am really grateful for the relationship I do have with my Pharmacy, because otherwise I would have run out of stock much sooner. They told me that Diabetes WA had three boxes of my infusion sets in stock, and advised me to place an order through them while I waited. Diabetes WA still sell NDSS products online, without the free postage option that was available prior to the changes. Thanks, Y.

So, the initial order from Diabetes WA arrived within a few days, and I had two boxes of infusion sets sitting on the shelf. But when I placed my next order in early February, it arrived partially returned, with a note on my receipt stating that the infusion sets were on “back order.” Again.

Diabetes WA only had three boxes in stock in January. I had purchased two, and the final box was likely sold to someone else during the month. I was also still waiting on my order from December. So, I think it was reasonable for me to assume that perhaps there were shortages. I then phoned the manufacturer, AMSL, who told me that they had plenty of stock in Sydney and that there was no reason for shortages.

When my order finally arrived last week, my Pharmacist told me that Diabetes Australia purge all orders after one month, despite the fact that mine had not yet been completed. That was, apparently the hold up.

When my order from Diabetes WA arrived a few days later and I suggested this reason, I was told that it was the manufacturer who purges all orders after one month.

To add to this, I’ve also heard another rumour that Animas Comfort infusion sets are being discontinued and these last four boxes had to be specially ordered for me.

Who do I believe?

There are two morals to this story. And well done if you’ve made it this far into my rant…

  1. Have a good relationship with your Pharmacist – they will be your friend and advocate and can give you advice.
  2. Get on the phone with your Pharmacist, the NDSS, the manufacturer, and keep reminding them that you haven’t received your orders. Don’t wait too long for them to call you back, because there’s a good chance they’ll forget.

A massive thank you to everyone who helped me chase down my orders through this long ordeal.

I now have four boxes of infusion sets sitting on my shelf at home. Hopefully my next order will arrive before they are depleted.


Clinic Days

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Clinic days always feel a little extra special to me.

It starts with anticipation. I feel like I’m going in for a job interview of sorts, rehearsing in my head what I’m going to say when I’m in there. I’ve got a list of notes on my desk that I add to in the days leading up to my appointment, of all the things I want to bring up when I’m in there.

There’s almost always a period of erratic blood sugars in the lead up to the appointment. It doesn’t matter how good my numbers have been in recent weeks or months, it always happens without fail. Entering into evidence yesterday arvo…


And of course, those most recent numbers are the ones that appear first on a Diasend report!

I get to leave work a little earlier than normal, which is always a bonus. I head onto the Freeway and drive towards the city, which is usually a breeze. I remember to bring my satchel with me, after having to walk with full arms and some very weighty pockets last time. Wallet, keys, phone, pump, wifi hotspot, meter, skittles, appointment letter, water bottle…you know the drill.

I search for free 2 hour parking on the street, rather than having to pay $6.60 in the hospital carpark. Weather permitting, of course. I cross the busy road, and follow the pathway adjacent to some beautiful green gardens.


By the time my appointment is done, I’m usually feeling pretty good about myself. I walk back to my car and begin the journey home, by which time I usually get stuck in traffic. When I finally get to Leederville, I pull into the carpark and grab a free one hour ticket. I walk through the alleyway and cross the road, where I arrive at Chocolateria San Churro. I usually order a regular takeaway White Hot Chocolate, which costs me roughly the same amount I saved on parking.

I have to manage type 1 diabetes every single minute, of every single hour, of every single day, for the rest of my life. I check my blood sugar, count my carbs, dose my insulin, eat my food and get on with my day. Until I have to do it again. I put a lot of work into keeping my blood sugar levels between 4 and 8 as often as possible. Yet I hardly ever stop and give myself some credit for my self management efforts. That’s not necessarily a bad thing. It’s just that I’m more focussed on trying to live my life at the same time.

Results pertaining to my diabetes management aren’t the only special thing about a Clinic Day. Clinic Day gives me a chance to stop and reflect on my diabetes management efforts, and give myself some credit where it’s due.

A White Hot Chocolate is my reward for getting through another few months with diabetes.

Here’s to many more…

Losing It

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I lost it today. I lost it, in a way that I never have before.

I’ve been away at a work conference on employment conditions for much of this week. This morning, the topic of discussion was timing of breaks. One of the ladies present in the room made the comment that one of her team members liked to have her breaks set three hours apart, so that she could eat. Aka, she had type 1 diabetes.

Overlooking the fact that a person with well managed diabetes does not need to constantly eat to avoid going low, I could definitely understand the need for such a request. I myself, thrive on a routine. I love hearing my alarm at 6, getting coffee at 9, having morning tea at 10 and lunch at 1 every day. It makes managing diabetes a little more predictable, and the adjustments are so much easier to make when necessary.

Then came a reply that left me seething.

Why doesn’t she just keep some chocolate behind her counter?

You know how in class there’s always one of those annoying, vocal students who likes to ask questions that they already know the answer to, just to act like the smart cookie? Well, this woman was definitely one of them.

I was infuriated. I was filled with rage, and this urge to shout. Yet this annoying woman who suggested chocolate just wouldn’t stop talking. I finally raised my voice over hers.

“LET ME TELL YOU, WHEN YOUR BLOOD SUGAR LEVEL DROPS, THE LAST THING YOU WANT IS TO HAVE PEOPLE AROUND YOU. YOU JUST WANT TO BE LEFT ALONE.”

The whole room went silent.

She didn’t even do me the justice of turning around to face me.

I really didn’t care.

She can act as smart as she wants to when it comes to employment conditions for all I care. But when it comes to managing a condition that you know absolutely nothing about, it’s not on. Not on at all.

Even though this didn’t necessarily concern me, it did. Even though I didn’t know this person concerned, she was a member of my tribe. The type 1 tribe.

Diabetes is hard enough. I work damn hard for my health, and the last thing I need is to be told how I should manage it. Or to feel guilty for it.

That was the first time in six years, that I really felt the urge to be vocal about anything diabetes.

And it felt good.

Hot or Hypo?

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I was out of the warehouse on Friday morning, doing the rounds of my work site. I’d done it before. I knew that it would be a more intense level of activity than I was typically used to. I knew that I had gone low the last time that I had done it, some months ago.

I knew what I needed to do to prepare myself, but my mind was elsewhere that morning. It wasn’t until I was outside, that it occured to me I wasn’t prepared. I hadn’t brought any skittles with me. I hadn’t set a temporary basal rate in advance of starting this activity. I hadn’t even checked my blood sugar level since breakfast.

I quickly pulled my insulin pump out of my pocket, setting a temporary basal rate of “OFF” for the next hour. It had been two hours since I had last eaten and given insulin, so I was pretty confident that the insulin I had on board from breakfast wouldn’t be a significant problem. My blood sugar levels had been falling back nicely to 5.5s after breakfast for most of the week, so I was pretty confident I would be fine on that front, too.

I just hoped I had set that temporary basal rate in time.

It was so humid last week. That uncomfortable, sticky, draining, end of the world kind of heat. I was sweating. I was exhaling air loudly, and thinking about how unfit (read: lazy) that I was despite my very physical job.

I had no idea whether it was simply the heat, or whether I was actually hypo.

I glanced down at my wrist, noticing the Medic Alert bracelet that I had neglected to put on that morning – the first morning I hadn’t done so in at least a month. In that moment, all I could think about was the possibility of collapsing in the deserted carpark. Would I lose focus, and suddenly walk across into oncoming traffic? Did anyone around me know that I had diabetes, or what that meant? Would anyone even know what to do if something did happen? Where would I be able to get sugar if I desperately needed it?

It’s rare that I have these kinds of thoughts. Ever. Yet being away from my meter and Skittles, alone and in a potentially dangerous situation of plummeting blood sugars, really sent me to the edge.

In hindsight, I was pretty confident that I was fine. If I were dropping rapidly as I do during intense exercise, I would feel it. If I did really feel the need for Skittles, I’m sure I would have doubled back. If my mind hadn’t been so preoccupied, I would have brought them with me.

When I was finally reunited with my meter an hour later, I couldn’t help but feel a slight sense of accomplishment after the morning’s events.