Pill Pop Transcript for episode 2 – 
Meds, Meds, Meds!

Silvi Vann-Wall: Pill Pop. A road trip for the chronically ill …

Izzie Austin: [whispering] It’s also a podcast.

Silvi: Pill Pop acknowledges the Traditional Owners of the lands on which we record. We would also like to pay our respects to their Elders, past, present and emerging.

Izzie: We’d also like to give a content warning: this podcast contains detailed discussions of illness both physical and mental, and while we take a funny tone, this content may distress some listeners. In Australia, Lifeline is free to call on 13 11 14, and we’ll have a list of local and international support services on our website, wheelercentre.com/pillpop.

Izzie: Right-o, off we pop …

Silvi: I see what you did there.

[SFX: theme music]

Both: Last time …

Cristina: There's no permanent solution to it, although one of the things that the gynaecologist did tell me was, ‘Well, some women find that if they get pregnant it goes away.’ And I'm like, ‘Hello sir I'm 22.’

Both: Coming up!

Charlie Park: … there are a couple of other hormones I don't produce at all anymore. One of them is cortisol. And without that you can't survive. So I would have died a few years back had they not picked this up.

[SFX: theme music fades out]

[SFX: car doors opening and closing, Izzie and Silvi settle in and start the car]

[SFX: phone vibrating]

Silvi: Did you just get reception?

Izzie: I can’t see my phone but from the sounds of it, yes!

Silvi: Hold on …

[SFX: phone keyboard clicks]

Silvi: *small gasp* Stop the ambulance! Pull over quick!

[SFX: ambulance screeches to a halt]

Izzie: What?

Silvi: Okay, so I have two things – One: The World Health Organisation has declared coronavirus a pandemic, and – Two: wish.com just sent me a targeted ad for a complete medieval plague doctor outfit at a very reasonable price.

Izzie: Oh shit. What are we gonna do?

Silvi: Well, I figure I can get a PO Box in the next town we hit up and get the mask and robe delivered there …

Izzie: About the coronavirus!

Silvi: Oh yeah. Good point. Well, I suppose if we don’t leave the ambulance for two weeks, we’ll be fine.

Izzie: Yeah. Good thing we recorded all these interviews in advance.

Silvi: Yep! Who have we got today?

Izzie: We have Charlie Park, a blogger and disability advocate is gonna talk to us about medication.

Silvi: Awesome. Speaking of medication, what’s your wildest medication story?

Izzie: Um … ooooh, I once somehow put the wrong insulin vial in the wrong pen …

Silvi: Oh no.

Izzie: … so like, I’ve got a long acting one and a short acting one and I put the short acting insulin in the pen I use for the long acting one and accidentally did like 30 units all at once. So that’s like … yeah, I needed a lot of sugar for that [laughs].

Silvi: So what happened?

Izzie: Um, basically I was just pounding jellybeans for ages and ages and ages until my blood sugar started like heading up again, it was like … [nervous sigh].

Silvi: So what was happening before then?

Izzie: Um … I don’t even know, my blood sugar dropped a little bit and like I just—I ate some jellybeans and it kept dropping so I kept eating jellybeans and I kind of didn’t even realise it until like the next day when I actually had a closer look at my pen and I realised – oh shit the wrong vial’s in that. I think I was like in the middle of doing a school musical so I was like ‘oh, it’s the adrenaline and the excitement and the dancing,’ like that’s...

Silvi: [laughs] Yep.

Izzie: … that’s what’s like causing my blood sugar to crash, and then the next day I’m like ‘ooooooooh’.

Silvi: You switched the vials.

Izzie: How did I not die?

Silvi: Like in Knives Out.

Izzie: YES!

Silvi: Spoiler alert.

Izzie: Yes!

[both laugh]

Izzie: Oh god.

Silvi: So um … you almost orchestrated your own murder.

Izzie: I almost did, that’s like the worst …

[both laughing]

Izzie: … that’s such a shitty whodunit!

Silvi: Yeah!

Izzie: And it would have been a great like closed room, too, ‘cause like I was in the rehearsal space with all the other dancers and actors and stuff.

Silvi: Oh yeah! Imagine shutting that down.

Izzie: That would’ve been great.

Silvi: All the drama kids.

Izzie: YES! Oooooooh, a whodunit but just with theatre kids.

Silvi: Oh my lord. The drama.

Izzie: God, literally! The drama!

Silvi: Oh yes.

[both laughing]

Silvi: I would watch that.

Izzie: Yes! I would.

Silvi: Make it happen.

[SFX: theme music]

Silvi: Alright, so, I’m on iron tablets, I’ve been taking them for a few months now because I’m pretty much constantly anaemic, but iron tablets do make you constipated …

Izzie: Mmmmm.

Silvi: … which is kind, you know, it’s kind of ironic because most of the time the problem I’m having with my colitis is the opposite of that.

Izzie: Do they just like balance out and you have normal poops?

Silvi: Kind of, yeah.

Izzie: Like, for the first time in your life.

Silvi: Well, it’s perhaps a little tougher than I’d like, it’s not ideal. Um … Oh, this image sticks with me always because it’s what the gastroenterologist always used to say to me, he was like, ‘Make sure that uhh ... when you have…’ I’m trying to think of how he phrased it, ‘… when you do your bowel movements …’

Izzie: Mmm.

Silvi: ‘.… make sure it’s the consistency of toothpaste.’

Izzie: Ew.

Silvi: That’s how you know you’re healthy.

Izzie: Oh god!

Silvi: Yes.

Izzie: Euuugh.

Silvi: Which is …

Izzie: I’m gonna have to brush my teeth tonight.

Silvi: [laughs]

Izzie: As I do every night and morning ‘cause …

Silvi: I’m so sorry! [laughs]

Izzie: ‘cause of how teeth work. Oh god! [laughter] [noises of intense disgust]

Silvi: And that’s just – it wasn’t just the specialist it was GPs as well.

Izzie: Oooh.

Silvi: So there must be like …

Izzie: This is like a whole …

Silvi: … a textbook somewhere saying like, ‘poo – healthy poo …’

Izzie: ‘ … toothpaste …’

Silvi: … needs to be toothpaste consistency,’ which raises so many questions.

Izzie: That raises a lot of questions. Which nasty fucking doctor …

[both laugh]

Silvi: Yeah, you … hmmm.

Izzie: You know, these two textbook writers, and they’re like trying to describe healthy poops, and one’s like, ‘Consistency of toothpaste!’ And the other’s like, ‘You know what? Fuckin’ yes!’

Silvi: Yep!

Izzie: That’s going in this book!

Silvi: Hell yeah.

Izzie: That everyone on earth is gonna read … [trails off, laughing]

Silvi: And the other thing is like, are we talking like a fresh tube out of the packet? Or are we talking like, you’re at the end of the roll …

Izzie: You have to really roll it up a bit …

Silvi: Probably not that one.

[laughter]

Silvi: Yep.

Izzie: Yeeeep. Look I kinda hate to bring it up, at this point, but I do need to use a toilet.

Silvi: Okay … so … where are we?

Izzie: Umm … oooh … okay, so we’ve got a big field … Oh there’s a house in the middle of that field!

Silvi: There is a house!

Izzie: That field full of really long overgrown grass, that looks like no-one’s been in it for a really long time.

Silvi: Is that crows?

Izzie: Yeah, that’s a crow.

Silvi: That’s a crow.

Izzie: And a really ominous looking scarecrow, it is not working, those crows are not scared.

Silvi: Hmmmm … okay. Well, let’s go knock and see if someone’s there!

Izzie: Yeah, there’s probably a toilet in there.

Silvi: Definitely not haunted.

Izzie: No! No … no …

[SFX: thunder clap! A door creaks open to reveal a haunted mansion – cue horror strings and echoey footsteps, like the start of MJ’s Thriller, heavy breathing]

Charlie: When I imagine it, it's something … like a soundtrack or a theme from a horror film.

[SFX: deep notes played shakily on string instrument]

Charlie: So there's a rising panic and rising symptoms. And it feels like my whole body's sort of screaming out, ‘Go lie down! Stop doing stuff!’ And my whole body is getting increasingly stressed and panicked and working itself up.

And I guess the theme from Jaws comes up. You know that da-dun, da-dun, dundundun.

And that kind of reminds me of, if I haven’t attended to the Addison’s there’s sometimes the screaming headache or the nausea that comes on in waves and hits my body, ‘cause there’s a feeling of dizziness and general sickness that comes over me … I often think there’s something in my body going, ‘Lie down, stop doing that, liiiiiiieeeeee dooooown.’ You know, this creepy voice that’s like something from a horror film.

[SFX: theme music]

Charlie: So My name is Charlie Park and I have Addison's Disease. I used to be Dr. Park, so I was a clinical psychologist. I worked a lot with kids with autism and then I became chronically ill myself. And I guess things switch. So I went from being the doctor to the patient and you know focussed very much on looking after my own health and learned a lot about the health care system. And through that decided that

I wanted to change my career and wanted to become an advocate for other patients with chronic illness and disability.

So now I'm a writer. I write a blog called Chronically Crappy. And I sit on a few different committees advising about disability rights and inclusion for people with disabilities and chronic illness.

So I have this rare auto immune condition of the adrenal glands. So auto immune means that your body's immune system’s gone a little silly and started attacking its own organs thinking that it's like a disease in the body.

Silvi: Yeah I know what that's like.

Izzie: We both have those.

Charlie: Yeah well I don't need to explain to you what that is. And obviously autoimmune disease can be of any different bits of the body so that mine is of the adrenal glands and also of the thyroid. When I say adrenal glands everyone thinks adrenaline but I actually still make adrenaline, I’m pumping out a lot right now actually.

[all laugh]

Charlie: But there are a couple of other hormones I don't produce at all anymore. One of them is cortisol. And without that you can't survive. So, I would have died a few years back had they not picked this up and had I not started on treatment which is daily steroids for the rest of my life. So … for a lot of people it makes them feel better once they start the treatment. But for me that hasn't happened and I still get a lot of symptoms of Chronic Fatigue Syndrome, really, a lot of headaches, and tiredness, dizziness nausea – all the fun things. So that's Addison's Disease.

Silvi: And when were you diagnosed with Addison's Disease?

Charlie: Ah, so I was diagnosed in 2014 but I'd been sick for 18 months before that. With all of the classic symptoms.

Silvi: That’s a long time.

Charlie: Yeah it's quite rare, and the doctors don't often look for it, and standard tests don't tend to pick it up. So I had 18 months of doctors saying, ‘Oh the tests are all normal, you must just be doing too much.’ Well I was actually slowly dying. And my body was getting sicker and sicker and weaker and weaker and I was losing weight and I had all sorts of strange symptoms.

Izzie: And what was it like trying to get the right the right treatment for it?

Charlie: So they confirmed the Addison's … and told me about what treatment was gonna be. So they said to me, you know, ‘You're really lucky. This is it's pretty simple compared to something like diabetes say, you just gonna take one tablet a day and

you'll be back to normal health. In fact you probably have better health than you've had in a decade because it's probably been affecting you for about a decade, and you can just go back to work. You can go back to the holiday you've got planned in India in a couple of months time. Well it's gonna be all good. So yeah.’

Izzie: And that wasn't the case was it.

Charlie: Nooooo, not at all. Well, I didn't even leave the hospital and I discovered that some of that was fibs because the pharmacist sat down with me and showed me all the tablets I was actually gonna be taking. Well it was two for the Addison's and obviously it's still the one for the Hashimoto's as well so that's still three new meds.

Izzie: That's a hundred and … no that’s three hundred percent on what the endocrinologist said.

Charlie: And wait  – there's more because the other thing is one of the tablets had to be taken twice a day.

Izzie: Alright, so …

Charlie: So that's another. Yeah. And some of the tablets couldn't be taken together.

Izzie: Oh.

Silvi: Oh gosh.

Charlie: Yeah. So the thyroxin pretty much can't be taken with anything else or with you eating, you know. So. So it turned out you know I was actually taking tablets at that point at least three times a day, and three different types and it was quite a shock to the system because I've never taken tablets daily aside from maybe The Pill before. And then an even bigger shock was I didn't get better. Yeah.

Izzie: Hmm.

Charlie: Yeah, so it saved me from dying, which was great.

Izzie: Step one.

Charlie: Step one. That was fantastic. You know and things like my blood pressure got back normalised. I started putting weight on which was great but then I started getting some of the old symptoms like the tiredness the headaches and some of the nausea I think came back. And then I got some new symptoms as well, so I started getting a lot of puffyness. Then I started getting weight gain. High blood pressure instead of low blood pressure. And and it was actually much worse than before because it was now kind of everyday.

Izzie: So is it kind of just trial and error to get that dose right?

Charlie: Yeah pretty much. There is some testing that can be done but it's not, unfortunately it's not like insulin for a diabetic whether you know a pinprick test that the patient can do on the spot and check their blood sugar levels we don't have that technology yet it's being worked on but we don't we're not there yet. So the only way to test it is to take full blood draws like at a path lab. So I've had one test done so far and it involved me having to do a hospital admission, and get my blood taken every hour for 24 hours so they could test my cortisol levels to try and work out what was going on with the medication.

Izzie: And like, you only have so much blood.

Silvi: Yeah. So that's that's pretty taxing on the system, right?

Charlie: Yeah, and it's even in the situation that if I have something like a car accident I actually need a shot of steroids so I carry an emergency injection kit with me.

Izzie: Oh wow, so like a sort of – steroid epi pen?

Charlie: Yeah, correct, except again we don't have that technology. No.

Izzie: So just a regular syringe?

Charlie: Yep.

Izzie: Oh no.

Charlie: So I had a syringe and a couple of needles. It's an intramuscular injection too, so it’s in my thigh.

Silvi: Oh no.

Izzie: Ouch.

Charlie: Yep!

Izzie: You have to do all that …

Charlie: In a crisis.

Izzie: …While your body's freaking out. Yeah exactly. Something is quite delicate like. Yeah.

Charlie: I haven't actually had to do it yet.

Silvi: Good.

Charlie: My partner's done it to me once and he was pretty freaked out by it. But it went okay. He got in there. And the hard thing is you know when I'm having what's

called an adrenal crisis so I don't have enough cortisol for the amount of stress my body's going through. I start shaking uncontrollably especially in my hands. So to try to assemble you know the needle and the syringe and you know I've got this little bottle that's not really designed to be used by a patient it's designed for hospital use you know. And I've gotta – there's all these steps and I have to change the needle because I use one two to puncture and draw it up and then I've got to change it for the one that's better to stab in my own leg.

Silvi: It's like bomb diffusal.

Charlie: Yeah, pretty much. But you guys may know that I did, it's, because the tablets weren't working for my body, I've ended up switching  – and I know you'd know about this, Izzie from being diabetic – I've switched to an insulin pump for my medication now.

Silvi: Yeah I am excited to hear about this. I have read a little bit about Phillip the Pump. Yes. I'd like to know more about Phillip the Pump.

Charlie: Okay, sure! Well I joined a Facebook group for other people with Addison's around the world and pretty quickly learned that there were lots of us that aren't doing well on tablets. Ha ha, surprise, surprise! Wasn't just me, which was really reassuring. And I quickly learned that what other people were doing was trying to mimic the natural production of cortisol. Eventually I discovered I needed to be taking the tablets six times a day because of my metabolism …

Izzie: Oh wow.

Charlie: … In order for them to even vaguely make me feel functional. So I was having to take them every four hours because they were running out every four hours. That was how fast my body was just burning through the steroid. And for some reason the doctors don't have much understanding about this. They just say everyone should be to take it twice a day and be great. It's like but people's metabolisms vary really widely. How's that supposed to work?

Silvi: It's such a common thing with chronic illness like, ‘Oh, doctors just don't really understand it.’ Say that about, yeah. You know everyone in this me right now everyone we've spoken to  –

Izzie: Yep.

Silvi:  – we all have this experience, it's bizarre.

Charlie: So what I learned was that there was there was an endocrinologist in the UK who did seem to understand these basic principles and had gone and studied the natural circadian rhythm of cortisol and studied the sort of biomechanics I guess of steroids and said hey these things don't match up very well. You know patients actually need to be taking them at least four times a day. And a lot of patients found that that – just doing that and following his prescription for taking them more often and different amounts different times the day really helped. I tried that and it didn't

work for my body because you know six times a day is just not very sustainable either.

Izzie: It’s – that’s a lot.

Charlie: Including waking at 3am to take a dose which is not good. And I had to eat because the tablets were burning my stomach lining as well they're really hard on the stomach so I'd have to wake at 3am and eat a light breakfast and take my tablet and then try to go back to sleep.

Silvi: How do you? – Yeah, how do you function like that? Like, you can’t work or –

Izzie: Like, you’d have to keep exactly the same schedule every day without variation.

Charlie: Absolutely. No. Because that's the thing. If I took the tablets even half an hour late I'd start feeling sick.

Izzie: Oh no!

Charlie: So you know there's no mucking around. I had to take them on time. So I just had to have systems in place. So yeah the only solution was to wear something that went off every few hours … it's disruptive doing anything you know. You know I had to think about what if I want to do something like a yoga class do I have to stop in the middle of a yoga class to eat and take tablets. And you know you're not actually supposed to eat it you know you might know around a yoga class. They say not to, it's dangerous.

Silvi: For the chakras?

Charlie: Blows your chakras up. I don't know why but you know it's kind of weird to stop in the middle of a yoga class. And I've done it. But you know pull out your pillbox Take your tablets, eat a muesli bar. Slam it down with some water and then sit for a bit and make sure you're kind of okay. And then I can back up again. It's really disruptive.But there is an alternative out there that I found through this expert in the UK who was talking about well we got to get these things a bit more natural.

So he came up with the idea of basically kind of borrowing or hijacking an insulin pump because an insulin pump is designed … it's actually designed to deliver any type of medication that's in a liquid form. It's just that diabetic is the most obvious application … and the advantage of it is it basically it bypasses the stomach and the gut altogether and puts the medication straight into your bloodstream and it does it continuously. So you know my problem of you know the tablets wearing off is pretty much resolved by a pump that pumps it into my body 24 hours a day for me. I can set as many, what they call rates or levels of medication as I need to. So I have currently seven different rates on my pump for different times of the day. And it does it pretty much silently on its own without me having to do anything all day, all night.

Silvi: That's awesome.

Izzie: That is such an improvement.

Charlie: Such an improvement! So I don't, yeah, I don't need to wake at 3am anymore to take tablets. I don't need to remember to take the tablets. It just. Philip does it for me. So yes Philip is the name I've christened my pump with.

Silvi: And why Philip?

Charlie: It was the first name that came to mind and was a bit of a play on words, so you know, Phillip the Pump … fill up the pump.

Izzie: Eyyyyy.

Silvi: Ohh!

Charlie: Yeeeaaaaahhh! So um … yes so Philip and I did wear him today on this side bag …

Izzie: Nice little pouch.

Charlie: … so I could bring him out easily to show you …

Silvi: Is that leather?

Charlie: It is leather, and it is a, um … it did come from a doof shop, you know like a doof clothing shop.

Izzie: For like a music festival?

Charlie: Yeah. Music festival, like a doof festival. I don’t … I don’t do those things, it’s not my style, but I quite liked this. It’s like ... Yeah I think a belt design for some sort of raver …

Silvi: What's the visual description?

Charlie: So the visual description is I have a, a pouch, which is covered in what looks like actually sort of dragon scales or fish scales, I dunno if you can see.

Silvi: Yeah I agree, they do look like that.

Charlie: It’s on a belt that's got several sort of loops and buckles and – it's quite fancy.

Izzie: It's like a Lord Of The Rings sort of fanny pack.

Charlie: Yeah!

Silvi: I was gonna go ‘cowboy’, but ‘Lord of the Rings’, yeah.

Charlie: ‘Lord of the Rings’ fanny pack – that nails it. I like it. And so Phillip himself looks like this.

Izzie: Kind of like 2008 MP3 player.

Silvi: I was going to say the same thing! Literally, I was like, ‘If they don't say MP3 player that’s … that’s what I’m jumping in with,’ ‘cause literally, yeah, it reminds me of what I'd take to like school and I’d have like 12 songs on it from Limewire.

Charlie: Yeah well I'm a little bit older so I kind of think of maybe a pager.

Izzie: I've seen those in X-Files.

Charlie: So Phillip is kind of a small brick-shaped object. Quite chunky. He's quite chunky because he does fit a batt – a standard battery in one side.

Silvi: Double-As?

Charlie: Yeah, they double? Yes double a battery on one side and the other side has, and I can actually open this and show you guys, has the canister – little canister or reservoir with my medication, and that's I'm holding up a little plastic like a little bottle type thing …

Silvi: Like a cylinder.

Charlie:  … cylinder.

Silvi: And it's got the measuring lines … it’s got like measurement lines on the side.

Charlie: And you can see a kind of slightly cloudy liquid in it which is my hydrocortisone medication. I'll put it back in so I don't lose too much medication. And then there's a screen on the front, and it has some very un-useful information on it like active insulin, which you know is not relevant.

Izzie: Just mentally substitute that.

Charlie: Yeah, because it's been set up for a diabetic. Yeah.

Silvi: And I guess you can't change the user interface.

Charlie: No! I'd like to be able to but it's actually not sophisticated enough, I was hoping to be able to fiddle with that maybe.

Silvi: Ooh, hack the coding.

Izzie: Hacking the mainframe!

Charlie: Hacking the mainframe, Matrix style.

Izzie: Even just insulin but with quote marks around it.

Charlie: Yeah!

Silvi: “Insulin”.

Charlie: Maybe I'll need to draw, just draw that on the screen maybe with a white out pen or something.

[all laugh]

Charlie: And so I’m leashed to this … to Phillip via this thin tubing, and then I have –and I can show you this. The site is sort of on my stomach and it's a bit of adhesive tape sticking a bit of kind of plastic knobby thing on me.

Izzie: Yeah it looks a bit like, you know when you see footage of someone getting a brain scan and they have those two little thingies stuck to their head.

Charlie: Electrode type of thing.

Silvi: Or like an ECG patch. For when they’re checking heart rate.

Charlie: Yeah. So it looks like that that's what you can kind of see on the outside and then inside this is a very small plastic tube that goes then into my skin.

Silvi: Yep.

Charlie: And the medication gets pumped from Phillip through the tube and then into me. So um. I am responsible for changing the site every three days. That's fun. And topping the medication up myself as well so I change over the reservoir and all this tubing and stuff myself. Um … but yeah I don't need to find a vein. I can just pretty much just whack the thing into any fatty bit, ideally on my stomach which is kind of good because then I can do it, I don't have to go into hospital or rely on seeing a doctor a few days to change it. But it did mean that I have to quickly develop some nursing skills myself …

Silvi: Yeah.

Charlie:  … to try to do that. And to do it properly, but um …

Silvi: Yeah, I think a lot of chronically ill people would say the same. I've definitely had to learn … yeah like basic nursing of colitis so that I can self-manage because that's so important. You have to have your autonomy, your independence, ‘cause those things are like quite quickly threatened when you get a very serious diagnosis of something that you're gonna live with forever, so …

Charlie: Absolutely you want to be able to do as much of it yourself as you can. You don't want to be reliant on other people, and you know doctors’ appointments aren't

fun or cheap, or you know and they're very time consuming so you want to minimise them. So if you can do it yourself, it's great. But it does, it does take – can take a bit of work. So Philip is taking a bit of work to kind of settle in, and it's taken me yet several months just to get confident changing him and topping him up and changing the site. And you know there are a lot of stuff ups along the way but I'm getting better at it now and more confident.

Izzie: It's been an overall improvement on … just your quality of life?

Charlie: Yeah. Definitely, so I feel like I've already got more energy and fewer symptoms I guess as well. So I still get tired a lot but I don't feel like I'm as sick as often. So I think before when I was on tablets I had a constant low level headache and nausea and dizziness and a lot of that's gone, which is fantastic. But we are still trying to get the medication rates right now for Phillip – so you know we talked before about how hard it is because I can't measure my cortisol levels quickly or easily. But you know with we're back almost at square one – trial and error trying to work out the rates for the pump because there's not a direct translation from what I was doing with tablets to the pump because it's totally different. So I'm hoping for more improvement but it's certainly been ... it's a really good start.

Izzie: Yeah.

Charlie: Yeah, it’s been a lot better.

Silvi: Out of curiosity how much does your illness cost to maintain. Per year roughly.

Charlie: Oh good question. Oh god I have no idea where to start calculating that.

Silvi: A ballpark figure then?

Charlie: I seriously don't know and it varies every year because like talking about some of the different costs …You know, yes some of my medications are PBS. Some of them, like one of the hormones because they're – it's not just cortisol I replace, there are a couple of others and one of them, you can't get in Australia over the counter so I have to get from a compounding pharmacy. And then yes of the multiple tablets that I'm still taking – like the thyroxin and one of the other hormones that I get over the counter. I'm trying to think … and then there are costs of you know I get a lot of body aches and pains so I go see an osteo or a physio regularly. You don't get a lot of that covered. And then, you know most years I have a hospital admission so I need to pay excess on my private health insurance, and I have private health insurance as well.

Silvi: Yeah.

Charlie: And good thing is they paid for my pump which is fantastic. So, I honestly don't know. I wouldn't know where to start with estimating my costs, and then out-of-pocket costs with specialists for tests.

Izzie: It is evocative because it's not just – it's not just specialist visits it's not just the main medication – it's also the flow on effect.

Charlie: Yeah, yeah absolutely. So it's really hard to quantify it's even … even the other cost I thought of the other day was that you know I used to work full time and now I barely work and when I do it's from home. The additional cost of electricity because I'm home all day. I used to be at work all day and with my electricity it's our electricity bills have gone up.

Izzie: And then as your like medical expenses go up your ... sort of, you can't work as much so your ability to pay for them goes down.

Charlie: Correct. Exactly. So you know ... I've gone from you know earning virtual full time salary to in probably negative numbers in terms of you know the expenses. Yeah, the medical expenses to our household.

Silvi: Yeah, ain't that the bitch of it.

Charlie: Yeah! Absolutely!

[SFX: theme music]

Silvi: Well thank you so much for talking to us, it’s been a pleasure.

Charlie: Well, thank you, that was fun.

[SFX: music]

Izzie: You'd be surprised about the variety that comes with insulin.

Silvi: Okay?

Izzie: Because when I started taking insulin, synthetic insulin were actually fairly new. Like I was diagnosed in 2000 and they've only really been using synthetic ones since like the late ‘80s early ‘90s. So I was on Humulog, which I'm still on, and Humulin. Humulog fast-acting, it starts acting within 15 minutes and keeps going for about three hours. Humulin was much more like longer-acting, it was like, it starts a few hours later and then like keeps pushing the sugars down. I was on like a very set schedule when I started, it was like X dose in the morning X dose in the evening. And that was good because like I was seven my body was a lot physically smaller so the doses were smaller.

Silvi: Strange.

Izzie: Weird, weird how that works.

[laughter]

Izzie: That worked for a while and then, because syringes are really fiddly anyone who's used a syringe knows it's fiddly!

Silvi: Anyone and giving to the pathologist knows.

Izzie: Yeah.

Silvi: They are fiddly.

Izzie: They’re so fiddly! And insulin syringes are quite small because they're designed to go into fat rather than into a vein which is great because it means my arms are not Swiss cheese, and it doesn't hurt as much but it also means it's a very small, very thin, very fiddly syringe. And the thing with syringes is you know you know how in movies you always see the doctor flicking a syringe and squirting a little bit out of it?

Silvi: Oh my god, do you know what’s happening right now? I'm literally getting like a phantom pain …

Izzie: Oooh, yeah.

Silvi:  … in the meaty part of my elbow.

Izzie: Ooh, yikes.

Silvi: Because I've had so many stuff ups, yeah. Yeah just so many like you know. Oh yeah. And I mentioned before where they they suck it into muscle. Yeah. And also just not being able to find my veins apparently. Oh yeah. Really tiny veins.

Izzie: Yeah I have – I have sneaky veins.

Silvi: [laughs] Sneaky veins.

Izzie: I have very hard-to-find veins.

Silvi: They've run off to Mexico and changed their names.

Izzie: Yep. Where’d you go, veins? Where’d you go?

Silvi: [whispering] ‘Witness protection. Sshhhhhh … ’

Izzie: ‘ … we've seen too much. Tell my wife I love her.’ Yeah. So they flick the syringe and squirt a little bit out in order to make sure there's no bubbles in it because ... you could die.

Silvi: And we would prefer not.

Izzie: Yeah. So when I was maybe 10 or 11 I started using pens which are way easier to use. And they're like they just so ... you get the dose exactly right every time, because it's instead of drawing it up and looking at the little lines.

Silvi: Yeah.

Izzie: It's just a little clicky thing and it's like one, two, three. Okay. I know exactly what I'm doing.

Silvi: Question: ballpoint or felt tip?

[laughter]

Izzie: Nice.

[SFX: theme music]

Izzie: Next time!

Ferris Knight: I had felt for years that I needed permission to use an aid. And the thing I liked about those was I could deconstruct it, put it back in my handbag – but a walker was a little bit harder.

Silvi: We’re talking about being in denial, with Ferris Knight.

Silvi: We’re talking about medication with Charlie Park.

Izzie: Pill Pop is hosted and produced by me, Izzie Austin.

Silvi: And me, Silvi Vann-Wall.

Izzie: And it’s produced in partnership with the Wheeler Centre as part of their Signal Boost programme. You can find more episodes on wheelercentre.com/pillpop.

Izzie: You can find us on Twitter @PillPopCast.

Silvi: Editing by Silvi Vann-Wall.

Izzie: With production support and mentorship by Bec Fary.

Silvi: This podcast is recorded at Studio 757 at the University of Melbourne.

Izzie: Music and sound effects are sourced from Audio Network, Lee Rosevear, Soundsnap and Incompetech.

https://www.wheelercentre.com/pillpophttps://twitter.com/pillpopcast

Silvi: And if you haven’t already, don’t forget to subscribe and leave a review.

Izzie: Pill Pop is a podcast about chronic illness. We’re not doctors, and no part of our series is intended to be taken as medical advice. If you think something might be up, try to find a doctor you trust. It’s a hard journey … but you’re not alone. If anything we talked about today brought up distressing feelings for you, remember that Lifeline is free to call from anywhere in Australia on 13 11 14. And we’ve got a list of support services on our website, wheelercentre.com/pillpop.

OUTTAKE

Charlie: And then Addisons’ would come in and attack it, with nausea [screeching] [laughter] ... that sounds like more like a seagull. That's not right at all.

Visit wheelercentre.com/pillpop to listen to this episode – or for more information, including support services. Pill Pop is produced, hosted and edited by Silvi Vann-Wall (she/her) and Izzie Austin (they/them) in partnership with the Wheeler Centre's Signal Boost programme.

https://www.wheelercentre.com/pillpophttp://wheelercentre.com/pillpophttps://www.wheelercentre.com/projects/signal-boost