Tuesday, 16 August 2016

Talking to a PWD 101

Tonight on the OzDOC chat (thanks again to Frank at type1writes.com for introducing me to this!) we were discussing diabetes and mental health. I'm very passionate about this and was really excited to talk about it. The chat was wonderful and some really great points were raised, but it got me thinking about how we can help non T1s around us to support us.

I usually don't discuss my diabetes and mental health with anyone besides my parents, psychologist and very few close friends. It's a tricky topic and it often makes people uncomfortable because they simply don't know how to respond. Usually when someone comes to us with a concern, we are able to draw from our experiences to listen with empathy and act as a sounding board/support. But when you add in diabetes, people start looking like a deer caught in headlights. Suddenly the link that helps them develop empathy vanishes, and it becomes a very awkward experience. Here's some strategies that I would find comforting from friends and family. This may not apply to everyone, but it's a good starting point.

Talking to your friend/family member about their diabetes and mental health 101:

  • Please don't freak out if we say our management is lapsing a little. This is a time for support and understanding, not a time for panic stricken faces and "but you're still managing it right? RIGHT?!" Yes it's serious, but there are other ways to help. Maybe try asking them what's making the management hard right now, or problem solve to find a way to get some help managing. 
  • Now is not the time for stories about Great Aunt Mildred who lost her foot and died of kidney failure. I know you're trying to be empathetic by relating it to something you know, but you're digging a very deep hole. 
  • Please don't behave as though T1 is the simplest thing in the world to manage and that after having it for X number of years we should be pro at it. It's not easy, regardless of time post diagnosis. By saying this you're telling us that we don't have a right to feel this way. Everyone has a right to their thoughts and feelings.
  • Please don't try and shift the topic straight away because you're feeling uncomfortable. This person has trusted you with something very personal and important. If you don't feel comfortable, at least offer them someone else to speak to who is better equipped. 
  • We might not be coming to you to fix it. You can't "fix" diabetes. Wanting to fix it comes from a good place, but sometimes we just want to talk about it. 
  • Understand that you can't understand my experiences entirely, just like I can't understand yours. Why? Because I haven't lived them. This doesn't mean you can't help, but there's a difference between offering support and claiming to know exactly how someone feels.
  • Treat them as you would any other loved one who comes to you with these concerns. The diabetes doesn't make much of a difference, it's just a different challenge. 

T1 is frustrating, upsetting, depressing, anxiety inducing and much much more. Having support is crucial. Creating a safe space to talk about these things is important, as sometimes it's hard to start the conversation. So what's the take home message?

Listen, don't assume, and acknowledge that it's okay for your friend/family member to feel the way they feel. Chances are that's all they need to hear.

Tuesday, 26 July 2016

Reasons why my diabetes doesn't want me to be an SP

My diabetes has had a 3 year vendetta raging against getting a tertiary education. It doesn't want it. It doesn't want to be a Speech Pathologist at all.

Reasons why my diabetes doesn't want me to be a Speech Pathologist:

1) Every single time I have a clinic session, it pulls out a low.
I have to set temp rates (lowering my background insulin dose) and eat before every session because I know it won't hold out.

2) It strikes when I'm trying to do my session plans. They're essential parts of clinic and compulsory with a strict deadline each week. My sugar sabotages this by going low and making me exhausted. Not conducive to session planning at all.

3) It likes to give me a reputation as completely unstable. My first lecture of second year involved me sitting in the front row sobbing because I was having one of those emotional lows. The kind where I was confused as to why my eyes were "leaking". That poor lecturer was great, too bad it looked like I was sobbing in response to her opening presentation.

4) I start every semester just like I did today:
<4= hypo/low sugar
2.9= waking up with your brain acting like it's drunk

Graduation is going to be a blast! $50 says I hypo when they hand me my degree.

Tuesday, 12 July 2016

2 Years Ago

I was interviewed almost exactly 2 years ago for this video with Trapeze as I'm a Youth Representative. Tonight's OzDOC twitter discussion focused on healthcare services and it reminded me of the hoops we jump through to access quality health care. It reminded me how much has changed regarding my healthcare management, plus my life in general.

So now I'm in my third year of speech, I don't lisp any more thanks to my speechie, I'm 20 and I put that insulin pump (Dobby) through an x-ray shortly after this was filmed.

I remember at this point in my life being very frustrated with the healthcare system. During this interview I had just been referred to a new endocrinologist and had my first session. It didn't go very well as you can probably tell by the video. I felt a bit lost in the system at the worst possible time. I had just finished my first semester of uni, I had all of these expectations heaped on me and I felt ready for none of it. I remember being afraid of how much responsibility I had to take on regarding my health. I was learning how unhelpful most government departments were.

I look at this video and see a girl who had no idea how the system worked. I was someone who hoped that everyone wanted to help and that procedures would be in place to get me through this time period. There were some, I had Trapeze! But I never expected to have so little support and so many issues from government agencies. I never expected I would have to enter the private health care system to receive the treatment I needed. It shouldn't be like that.

The public system is underfunded and understaffed. I don't blame the health care professionals for that at all. I think they work incredibly hard with what they're given, and they have my gratitude. But unfortunately my experience was that someone like me slips under the radar a bit because I'm not a priority. I'm an over-manager, not under. There wasn't much support for that, nor was there a relationship between my specialist and I that was facilitative. I felt directed sometimes because my specialist's time was so limited. Now that I've entered the private sector since this video I'm receiving that care I need. I'm very focused, controlling and persistent. I need an endo who can work with that and support me. I found one, just not where I expected.

Is my health care experience perfect now? No. But it works for me and I get a lot of support. I hope that seeing young people's experiences with this system is a wake up call for government agencies and funding bodies. Teenagers shouldn't be left to navigate this system alone, that's what Trapeze is for. But the system shouldn't be so messy in the first place. I'm not sure what I can do about that, but I know that as a future health care professional I will ensure that my clients direct their treatment and that they feel their voice is heard.

Monday, 11 July 2016

National Diabetes Week 2016

Apologies for my blog hiatus. It always happens after Blog Week. I love Blog Week but it makes me exhausted and I don't feel like touching this thing for a while afterwards.

It's National Diabetes Week here in Australia, yay! Well, partially yay. It brings awareness to the conditions yes but sometimes I'm not overly fond of their theme selections.

This year it's diabetes related amputations, great huh? Cheery. Wonderful. I feel inspired already.

Seriously though, it is a very big thing and yes it does need attention. Like every other person people with diabetes of any type should be encouraged to look after their health as best they can and seek support when they're having trouble.

However, for type 1s (or at least this one) it feels a bit like a scary unknown. I don't like to motivate myself using scary things. I mean it wouldn't be nice if everyone tried to motivate themselves to live a healthy life by thoroughly studying their family medical history and determining their risk of cancer/heart disease/dementia/Parkinson's etc.

My family history consists of basically every major disease known to man, so I think I'd be living in a plastic bubble if that were my approach.

Personally, this week I think I'll just be hoping to spread awareness in any way I can.
Diabetes Victoria have a nice initiative- Diabetes Won't Stop Me.
JDRF have a great initiative of getting 1000 people to sign up to the JDRF One Walk (formerly the Walk to Cure Diabetes).

Here's a link to their site: http://walk.jdrf.org.au

Taking on that spirit instead, Happy National Diabetes Week!

Monday, 23 May 2016

The Ketone Strip Shortage

I just saw a status posted by a friend of a friend, and it opened up a whole new world to me. I did a bit more digging and finally found out more about the nation wide ketone strip shortage. 

T1Ds use ketone blood or urine strips to test our ketone levels. Ketones occur with very high sugar levels, or when you’re sick. In t1ds the presence of ketones with a high sugar is very dangerous and called diabetic ketoacidosis (DKA). The body begins using its own supplies for energy and the glucose level rises.

In short, DKA is the threat high sugars pose. It can lead to organ failure, coma, and death.

We aim to keep ketones under 0.6, anything over that and there’s an emerging problem if your sugars are over 15 as well. 1.5 and you often need to seek immediate contact with a healthcare professional.

The ketone strips we use are inaccurate, or expensive. Ketone urine sticks have a 20minute delay, but they’re cheaper. Ketone blood strips are more accurate, but don’t come cheap and only have 10 in a box. I got sick when I went to Tasmania and had to go through a few of these strips. But even though I was sick I was treating them like gold because they’re expensive. But they’re also oddly rare.

There’s a national shortage of these strips all the time. For some reason supply is never meeting demand. 

Turns out people on the low carb ketosis diets (people trying to get ketones to lose weight) are buying them. Ketosis isn’t dangerous for them because it’s not ketoacidosis, because they don't have the associated high sugar. There are pages and pages of people encouraging it all over the web. I found them. They’re full of tips, and even specific information of where in the chemist you can buy the strips. One person even laughs at how no one really needs to have them, but it’s nice for a nerdy person who’s interested in tracking ketones. Some T1s use them for their own ketosis diets and encourage it.

So these strips are being used for a fad diet.

As a few of my friends can attest I was absolutely filthy for a solid hour. How dare these people on fad diets buy out life saving equipment for what is basically “fun”? How dare they leave us with the useless urine sticks that have such a big delay and inaccuracy that there’s very little point to them? How dare they abuse the enormous gift they have of not NEEDING to do that?

So I threw this enormous rant at my mum, as usual. Of course at first she was as angry as I was. But then being the logical, kind person she is, she gave me a different perspective.

Disclaimer: I’m still really annoyed about this and will contact the suppliers of ketone strips to do something proactive about it. But I do acknowledge this side of it.

The issue isn’t really about the consumers, it’s about the suppliers. They don’t make ketone strips prescription only. They don’t require proof of being diabetic to buy them. There isn’t enough education for these people using them for ketosis diets to know that they’re life saving equipment. The people producing the product are not supplying enough to meet this new demand.

So if they’re available, who am I to say who can use them and who can’t?
Yes, they’re in the diabetes section or behind the counter. Yes, these people know they’re for diabetics. But as I find time and time again, people hear diabetes and they don’t think of life endangerment. They think of obesity, food and exercise (which of course is not how t2 works at all, otherwise there would be far more t2s).

Hey, they’re trying to lose weight too, so it’s okay for them to buy it!
Or at least that’s the thought pattern.

I guess the issue is a lack of education, of both the consumers and the suppliers. The consumers don’t know what they’re buying, and the suppliers don’t know they have a new market. Plus the t1s they are exposed to are on these diets themselves, so of course they encourage it.

That calmed me down a little. But why am I still annoyed?

It’s really simple. I’m jealous, and it’s a personal affront. Sometimes when these things happen, I think it's okay to have a bit of a whinge.

They don’t have to check ketones. They don’t have to worry about ketoacidosis. They don’t have to worry about blood sugar checks. They don’t have to worry about insulin injections. They don’t have to worry about trying to buy ketone strips in an emergency and not finding any at the chemist.

But I do.

I have calloused, spotty fingers from testing 10+ times a day for over six years. I have constant expenses for supplies. I have scar tissue and markings and pockets of collected fat tissue from injections and pump cannulas going into my stomach and sides again and again.

I have no choice, but they do. They don’t have to do this. Sure, go ahead and do your fad diet, I don’t care. I’m not saying weight loss is easy, or no big deal. It’s hard and people try a lot of options to achieve a goal- their health.  It’s not really their fault because they don’t know. It’s on the suppliers to either educate, or supply more to meet their new market.

Yes, I am jealous that something essential for me is a luxury gadget for someone else, and it sucks. 

But now the whinge is done it's time to go and educate the suppliers. To sit back, moan, and do nothing about it is redundant. Education creates new ideas, ideas create action, and action creates change. 



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Friday, 20 May 2016

DBlog Week 2016: Tips and Tricks

Tips and Tricks - Friday 5/20
Day Five: "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."

As usual I'm really sad D Blog Week is over. I'm also sad I have to post this at half past 5 in the morning because of uni commitments. Early bird gets the worm and all that jazz I suppose.

Thank you all for reading my posts and commenting. I love the level of interaction during this week and getting to catch up with all of you. I've tried to read as many blogs as possible and will keep going over the next few weeks while they're still up. A massive thank you once again to Karen at bittersweetdiabetes.com for her hard work to bring us all together. You're on the other side of the world but you've made a huge difference to my life and many others. 

On to the post!

I never have any cool tricks so I'm more excited to read everyone else's posts later today, and tomorrow for other countries. But I can show you a few things. 


So if you recall, last year I revealed that I am in fact a disgustingly messy critter, much to my mum's dismay. But I have exited teen-hood and moved up in the world! Check this out:

I get everything in this bad boy. I have a hoarding issue with papers, so pump manuals and pamphlets galore fit in here too. It may have almost caused WW3 (it was a flat pack. I paid for it but needed Dad's help to assemble it), but it was worth it. No more messy wardrobes of shame! I also promoted my floor coke cans to bedside table coke cans. 

My goodness I think I turned into an adult! 

Just kidding, the drawers are a mess inside and I just remembered this sneaky pile. Old habits die hard right? Maybe next year I'll progress into a neat drawer person. I'll keep you posted.

The Magical Bags

These are a new addition to my life but they are the best things ever. Would you look at all those pockets! It has a wallet section and space for your phone and everything!

I am someone with a strong appreciation for big bags but they get in the way when you go out. Plus they are really heavy. So these beauties are my favourite things at the moment. You can find them here: http://www.myabetic.com (Men's options too!)

The Sets

If you didn't know, medtronic sets (the disposable ones at least) have the option of an 80cm tubing line. Get it and never look back because you won't rip out your cannula when you sleep ever again. Extra long is the way to go!

The Clothes

My one little trick is probably how I dress with the pump. What's a girl to do when she has an insulin pump and is wearing a dress? Well, the most common response is thigh belts or clipping it to your bra. 

1) Thigh belts never work for me
2) I could do the bra thing but that's not really a happening thing for me if I'm after "subtle" and "not noticeable"

My solution? Shorts under dresses. For long dresses, I try and get a side split or go for the mullet dress (you know, short in the front and long in the back) for easier access.
Strategically placed ruffles and changes in fabric are also very pump disguising. Dark colours also help.

And one very weird tip? For some reason if I turn my pump around the other way (i.e. instead of the screen facing out, have the screen facing toward my stomach and the clip outward) it reduces the pump bump. Plus it removes it from view for the little ones who want to grab it when you're on placement.

Exhibit A and B. I use all these strategies and pump visibility is low!

Alternatively, wear your pump how I normally do. Out and proud.

I used to get really concerned about it and refused to buy tight dresses because it "looked bad". Now I really don't mind at all. It's not a bad conversation starter and I get to laugh at everyone trying to work out what it is. 

Pager, music device, clip on phone, who knows?
I'm a woman of mystery. 


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Thursday, 19 May 2016

DBlog Week 2016: The Healthcare Experience

Day Four brings us to the topic of The Healthcare Experience: "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 wrote this post in advance, but due to the changes going on in Australia right now, I wanted to rewrite it. So settle yourselves in for a long one because I'm stepping up on the soap box again (unrelated but I really need a cool graphic like Renza at Diabetogenic). 

To start with I'd like to say that this is potentially not the most interesting area for everyone and I understand that. So please, no obligation to go through all of this. But it's something I'm passionate about which means I do go into a lot of depth! I am a youth representative for Trapeze, which is a service that assists young people aged 14-25 with chronic illness (and known to the Sydney Children's Hospital Network) transition from the paediatric sector to adult healthcare services. In short- I'm big on healthcare services and a big part of my blog is addressing the gaps in the system, particularly surrounding type 1 diabetes and adolescence into adulthood.

As usual, views expressed on this blog are my own, and are not those of Trapeze or anyone else. I also don't get paid to mention them/link to them or their content. This is my personal blog. I just happen to really like them!

Carrying on, I'll split this into sections because my healthcare experience is enormous!

The Main Team

My main team used to be an endocrinologist, diabetes educator, and my GP. Now I just have an endocrinologist and a GP. I'm not lamenting that though, it's amazing. My endo is basically 3 professionals in one and is incredibly responsive. She emails me on weekends, it's great. But the drawback is that to get this service I had to enter the private sector, because the public system of seeing a junior doctor (and a different one each time) didn't work for me at all. I like one on one contact with someone who knows me and my condition well. 

My GP is also very supportive, and whilst she doesn't know much about my T1 management, she always asks how it's going and tests for ketones when I'm sick. Plus she tells me how my illnesses or medications might impact my sugars. In short, no issues here. These guys are brilliant.

The Support Services and Allied Health

First support service was Trapeze and they're brilliant. I also consider dieticians and psychologists allied health/supporting services. I'm very lucky to have had excellent experiences with these professionals. One thing that could improve is communication across professionals, but as a healthcare student I understand how hard this is. Travelling to different places to see these professionals is also a bit of a drawback. My dream? One place where I can access everyone at the same time in the same building. Again, they're wonderful and really listen to my concerns so I feel enabled to take control of my own condition. 

The Government

Oh we were doing so well. 

I know that a huge number of people reading this aren't from Australia so let me give you a very brief rundown of how it all works here. We have two main parties, the Labor Party and the Liberal Party. Currently, we are under the Liberal Party, also known as The Coalition. The Prime Minister and leader of this party is Malcolm Turnbull. It was Tony Abbott but we chop and change PM with the change of the season these days. There is no limit on how long someone can be PM, unlike the US where you have the term system. Centrelink is a government department that give funding/allowances/concessions to those who need financial assistance for whatever reason. Medicare is related to Centrelink and cover some things, but for other things like insulin pump coverage you need Private Health Insurance. 

Anyway! There's an election coming up soon because the PM called a double dissolution and so we have to go and re-elect everyone all over again in a few months. Such fun.

The main issue at the moment is CGM coverage. In Australia we don't get any subsidy at the moment for CGMs, and they're not under private health insurance either. They're deemed unnecessary, a luxury item. Recently Malcolm Turnbull and the Health Minister announced that if The Coalition is re-elected they promise to put in $54 million toward subsidising CGMs for 4000 people under 21. For my view on that check out my post linked at the start. 

There is a gaping hole in the system, and that gaping hole is full of young adults and adults with Type 1. 

The government seem to have this funny idea that Type 1 Diabetes is a childhood disease and when you turn 18 (the age where you can legally drink, vote and call yourself an adult in Australia) it disappears into magical fairy dust. 

Who knows where they got that from.

I have had nothing but drama from Centrelink the minute I turned 16 (the age you can make many of your health related decisions in Australia). Cancelling of health care cards, allowances, and general confusion. It was atrocious and I spent far longer than I care to remember on the phone waiting for a customer service rep to pick up. This was the first year they didn't accidentally cancel my health care card. I almost cried from joy.

This is a big big problem. Services should be available and targeted toward people over 18 with T1. It does not disappear, it does not get easier. I should not stop receiving a health care card because I stop studying. We have a chronic illness, an expense that everyone else does not have to pay. We need those concessions as children, and we need them now.

I know I am very fortunate to live in this country, and our healthcare system is fantastic as a whole. But this gap is not okay in this country or in any other. These organisations should work with the people and their medical professionals to provide a service that is helpful and accessible. Your quality of health care should not depend on your funds/socioeconomic standing. 

In my view, everyone is entitled to quality health care. It's a basic human right. Type 1 Diabetes is not a childhood disease, it is chronic. It lasts forever. 

So what is my ultimate healthcare model? One where the patient is treated as an expert in their condition, an equal, and capable of making their own decisions. A model where financial support is available and easy to access for those who need it. A system that is cross-departmental, where everyone knows everything and you're not trekking between services telling the same story again and again. A system where your health is not used as a vote grabbing device in the lead up to an election. 

Sadly, I don't think anyone has got this quite right yet.


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Wednesday, 18 May 2016

DBlog Week 2016: Language and Diabetes

Day Three: Language and Diabetes: "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.”

I could have sworn I'd posted about this before but I can't seem to find it. So here we go again!

As a student health professional I use patient first language religiously. When referring to other people I use it. When referring to myself I really don’t care, but I know other people do so I try and respect that by starting off with person first language. I call myself a diabetic, other people can call me a diabetic. As long as that's not all I am. 

In terms of testing and checking, I’d never thought about my language. I use checking, no idea why. Habit? The fact I like to check things? I think I use test for more formal things like blood tests, HbA1c tests, that kind of thing.

I fundamentally believe I’m more than my condition, but I don’t think calling myself a diabetic takes away from this. I'm Bec. Bec's a diabetic. Bec's a student speech pathologist. Bec's a pianist. Bec's a person. 

I’m pretty boring on this topic, but I know for many people it's a very important issue. So today I pass the microphone to you!

What do you use? Are you part of the majority that prefer not to use labeling/judging language? Or are you like me and don’t spend much time thinking about it? Share your passion (or lack of) about this subject, I'm interested. 

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