Tag Archives: chronic illness

It’s about time

It’s about time I told you my diagnosis story.

This isn’t coming out of the blue – National Diabetes Week is this week, and for the first time there is a part of the campaign exclusively focused on type 1 diabetes, and knowing the early signs of type 1. Their hashtags (well played Diabetes Australia, keep it up #hashtagsarelife) are #ItsAboutTime / #NDW2017 / #4Ts , and the first one jumped out at me.

It’s about time that we knew what the signs are – with all the resources available to us at the tips of our fingers, with HCPs having more qualifications and knowledge than ever before, why is this still being missed? Why am I still hearing stories on diabetes camp about kids and adults being dismissed as ‘dramatic’, ‘sensitive’, or ‘just a bit stressed?’

Alright, buckle in, make a cup of tea, and read up. This is long. You’re in for a tale and a rant on why #ItsAboutTime the symptoms of type 1 diabetes need to be known. #ItsAboutTime that we understand that diagnosis does not stop at the words “You have Type 1 Diabetes”, and that a diagnosis is multi-faceted. Treat the diabetes, but treat the tidal wave of emotion that comes along with it. 

January, 2010

I’m 17. I’ve just returned from an exchange trip to France, and I am buzzing with my newfound acquisition of the language, an obnoxious penchant for relating everything back to my trip (“That reminds me of this one time, in France, where…”), and a taste for French wine. I have a week before I start Year 12, and being the nerd that I am, I land in Melbourne and pick up my books the next day. We’re studying A Streetcar Named Desire and dear God, I will do all the pre-reading and extra reading if it kills me.

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17 year old me halfway up the Eiffel Tower. May have had a glass of pinot for déjeuner.

February 2010

Ok, so it’s starting to kill me. It’s been a few weeks since Term 1 has started, and I’m already feeling tired and burnt out. Each day seems like more of an obstacle, and I go from being full of beans at the start of term to sitting at the back of the classroom and willing my brain to concentrate on the words and data in front of me – and why is my vision kinda fuzzy? My school has three levels, and dragging myself up those stairs become like scaling a small mountain – as the weeks go on, I start to pause and lean against the wall to get myself to each floor. I’m also drinking, and therefore peeing, a LOT. I carry a 1.25 litre drink bottle around with me, and fill it up every chance I get. I’m constantly asking to go to the toilet, and my teachers are starting to get annoyed. I stop hanging around after class and run to the toilets every break that we get.

I’m losing weight, and I’m LOVING it. All of my friends are complaining about their “Year 12 padding”, yet whatever I eat, I seem to drop even more weight. I sit there smugly eating a Mars Bar while my friends complain – hey, I may be exhausted, and married to the toilet, but at least I’m losing the muffin top!

A week pre diagnosis. I’d lost more than 10kgs in two weeks, but unfortunately still thought a side fringe was a good idea and that Passion Pop was the height of house party elegance.

Mum notices that something is up, and even though I protest and say “I’m just stressed”, she basically frogmarches me to the car and takes me to the GP. She’s heard me peeing like a horse at least five times a night, and I’ve taken to sculling water ON the toilet – this thirst just won’t go away, however much I drink. Over the next couple of weeks we see three doctors in a row, all of which tell me that I’m stressed (“told you Mum”), working myself too hard, and may ‘have a small virus’. They do no tests, not even a simple blood prick, and raise their eyebrows if we push any further. So we don’t.

This is done way too often – people are brushed off, time and time again, as too dramatic, anxious, or sensitive. Often, it is mothers taking their kids to the doctor, and often it is mothers being told to ‘calm down’. Whether it is the mother or the patient, women are consistently discriminated against within the healthcare system – consciously or unconsciously, but the fact remains that it happens. I’m not saying that doctors misdiagnosing is exclusive to women, but I am saying that it is more common, and that it is embedded in the Western healthcare system. You can see this here and here (done as part WHO Commission on the Social Determinants of Health). If you’re still thinking “Classic Georgie, harping on with that feminist rubbish” do a quick peer-reviewed study search and you will be buried with research that shows, time and time again, women’s concerns are dismissed and/or delayed. Whether that woman is seeking treatment for herself, or a dependent, we are pushed away, told we are being dramatic, or that we’re too sensitive. One of my closest friends was diagnosed with ovarian cancer when she was 22 – TWENTY TWO – and only got the ultrasound that ultimately diagnosed her cancer when her nurse mother pushed and persisted for it. We should not be advocating to get to the bottom of a problem, that’s our GPs job. 

MOVING ON

Labour Day Weekend, March 6th – 8th

I am beyond exhausted. My family is packing for a camping weekend away with my cousins, and because I like camping as much as a poke in the eye with a sharp stick, I’ve decided not to go (Why would you pay to sleep on the ground and shit in a hole?!). However, watching them prepare to leave makes me scared, and I make a last-minute decision to go with them. I’m scared because I can feel my heart beating through my chest, it takes energy to lift my head off the pillow, and my vision is a little fuzzy. To put it bluntly, I feel like death.

We’re camping with my cousins and some friends – and one of these friends has type 1 diabetes. He is my parents’ age, and when I mention my incredible ability to pee and drink at the same time, he furrows his brow and pointedly tells my aunt to “take her to the hospital, that’s not good”. The weather is terrible, so we shrug and I secretly revel in the fact that I only had to sleep in a tent for one night. We debate back at my aunt’s whether to take me to the local hospital then, or wait until tomorrow, but I’m so tired and comfy that I’m already sleeping and the point is moot. Unbeknownst to me, my aunt checks my breath that night – her friend told her that if I had type 1, my breath should smell sweet. It did. Lucky me.

Before heading to the hospital, I google my symptoms and everything points to type 1 diabetes. “Hey guys – Google says I have type 1 diabetes! Haha oh god can you imagine, I’m so bad with needles.” Idiot.

March 7th

We get to the hospital, and my mother lists all the symptoms that I have, and we’re rushed right through. I’m leaning against my aunt, nestling my head on her shoulder and trying to regulate my breathing. My chest is hurting, and I feel like my whole body is full of lead. The nurse pulls out a finger pricker, takes my blood, looks at the meter, and my aunt looks over and says “Oh SHIT”.

From there, I’m hooked up to a million drips, and I start to cry. I hate needles, I don’t know what’s happening, and my mum and aunt are on either side of me trying to calm me down. At some point, a doctor walks in, tells me my blood sugar levels were ‘dangerously high’, that I have type 1 diabetes, and she walks right out again. At this, I feel like I’ve been punched in the face. Type 1 diabetes? What the hell is that? Is this my fault? Is it all the Mars Bars that I ate?

Aftermath

I spent around a week in hospital, but I can’t really remember a lot of it. I do remember crying my heart out that first night, and I’ve never felt grief like it. The sobs seemed to come from within my very bones, and reverberated through my body as I cried under the blanket, fist curled around my hair and my arm hugging the pillow. I didn’t know anyone with this, and all I had heard from people around me was how diabetics died early, how they went blind, and how they had to inject themselves all the time. The insulin being put back into my system swelled me up, and I panicked – I was getting fatter AND I had a lifelong illness?! There was no consideration for my earlier medical history – my mental health, my history with eating disorders – behind the scenes there may have been, but from where I stood I was told to ‘deal with it’ whenever I brought up my feelings. As soon as I was physically balanced, they led me out of the ward, with a handout on carb counting and injecting and instructions to ‘find yourself an educator in Melbourne’.

2010 was a hard year. I often started crying for no reason, and I was resentful of this new part of my life. I was angry, and upset, and confused – and alone. Nobody in my life knew what it was like, and I had no idea where to find people that did.

Not only is it about time that we know the early signs, it’s about time we make diagnosis easier. Diagnosis is always going to be rough – but you know what makes it easier? Know the #4Ts, get people diagnosed before they reach this stage, and once they’re diagnosed?

Hold their hand a little. We may be adults, but we’re just starting out with diabetes. Slip a support group pamphlet into our hand, welcome peer support volunteers into your hospitals, and for the love of God – stop telling teenagers that they’re going to go blind and die as you teach them to carb count. 

Type 1 diabetes strikes anyone, regardless of age or lifestyle. Know the 4Ts – Thirsty, Tired, Toilet, Thinner – and if you’re worried, ask for a finger prick. It only takes a minute, and could mean an introduction to this world that is calm and positive, not one that is scary and lonely. Diagnosis needs to be holistic and considered – remember you’re dealing with a human that is dealing with this forever, not a medical textbook case study. Help us find our tribe!



 

Relief 

Guess who hadn’t had an eye test for three years because she’s scared of anything going in or near her eye?*

This girl.

Guess who has nightmares about waking up and going blind because her first endo told her that it was basically inevitable she’d end up on dialysis with no legs and no sight? 

This girl.

Guess who finally built up the courage to go and get them tested and has PERFECT eyes?!

THIS GIRL! ​

I went today because I was assured this optometrist was good with eye sooks like me – and this is why it’s so important to work with your patients. If I feel judged or patronised, there is no way I’m heading back. Sometimes I’ll go somewhere else, but often I’ll withdraw altogether. Treat your clients as equals, and we’ll be loyal and back every time 👌🏻 

*stop sniggering, I hear you

Keep ’em at home 

Whiny post alert!

PSA on behalf of type 1 teachers/teachers with chronic illnesses everywhere.

Keep your sick kids at home!!

I understand that it’s hard being a parent and having a sick kid is bloody hard work what with arranging care. I know it might seem easier just sending them to school BUT…

I am not a babysitter. School is not a childcare service. I am here to educate your child, and your child comes to school to learn. If they are not well enough to learn, they should not be at school –  they need to be at home in bed. 

Not only do other students get sick, this turns my workplace into a cesspit of snotty noses and infection, some teachers (*cough ME*) have compromised immune systems and a cocktail of other chronic health conditions – without a doubt I will catch your kid’s ‘harmless’ virus and at best, spend the next few days in bed. At worst, the Alfred Hospital emergency department, DKA, and I become acquainted once again. 

I know they “just have a small virus”, but that virus is contagious, and they also have working organs and a killer immune system (except those few spoonie students, god bless my compromised immune system kidlets). Let that system do its job and keep them at home for one more day while they’re still contagious – they and we will thank you. They’re teenagers, all they need is Netflix. an internet connection, and permission to raid the kitchen. 

Who feels like pricking their finger with aching skin, a sore throat, and a fever? Who feels like spending their weekend trying to mark exams with double vision? NOT ME.
“But Miss, you always seem sick” (Year 11 students after a dizzy spell) 

THAT’S BECAUSE YOU ALL KEEP COMING TO SCHOOL MATE, weirdly it’s frowned upon at work to walk around with a mask and industrial sized bottle of Dettol. 

“Line up outside 7C I just need to disinfect everyone before you come into the classroom” 

Keep 👏🏻them 👏🏻 at 👏🏻 home 👏🏻

Have faith in others.  

I slid down against the wall, checked the train timetable, and sat back. I felt a little funny, but today had been a weird day. A small fire at uni, that had us joking in the corridor but then mildly freaking out as we realised we were stuck on the first level due to the single stairwell being blocked. Then news from Bourke St, that a person had mowed down pedestrians and left a trail of carnage behind him…today had not been a good day, I was ready to get home and build myself a doona and pillow fort.

Suddenly, I couldn’t control my limbs. I looked down at my thighs twitching, and inwardly screamed at them to STOP! Before I knew it, this twitching made its way up my entire body and I wasn’t able to see through my blurred vision. I started fitting -I couldn’t control my limbs or my head, it was like the screaming in my brain to stop was blocked by each jerk against the tiles. I could hear voices around me, feel hands touching my head and the sweat in every pore, but I couldn’t pause it. Being awake in your own body while you fit and watch people around you freak out is not something I’m keen to repeat.

 

I spat out “diabetes” as the convulsions became less strong and a nurse (found that out later, at this point she is an angel) pulled a coke out of her handbag and grabbed my shoulders as she forced it down my throat. Looking back, it must have looked very Steel Magnolias – DRINK THE JUICE SHELBY!

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Some beautiful women called Donna and Kate helped me onto my train, and let me cry at them until my stop, where a woman called Sal sat with me until my blood sugar reached the sixes. She fed me all the hypo food I had left while telling me about her niece with type 1, and how hypos are “such a pain!” You’re not wrong Sal, you’re not wrong.

Times like these act as a reminder that I’m not invincible. That however much I tell my body not to drop, to hold on, to keep it together, that sometimes I lose all semblance of control.

I forget that the majority of humans are inherently good. 99% of us want to help each other, and have empathy in spades. I felt so looked after by these three strangers, and they were so caring and genuinely worried that I nearly started crying again. Throw that together with my friend listening to me freak out on the end of the phone for a solid 10 minutes, and my diabetes crew assuring me that it’s happened to some of them…

Scary things can happen to those of us with diabetes, and I really think the only way to tackle it is by trusting that we will be ok. That people around us genuinely care, and that being vulnerable and letting yourself be helped (both physically and mentally) is really the only way to acknowledge those scary feelings and keep on living your life. We can’t let diabetes stop us altogether, but sometimes we have to let it stop us for a little while – stop us and force us to acknowledge that we are not invincible.

That timing though…

Diabetes is quite particular when it decides to f*ck things up.

I guarantee you I will never go low or high when I am sitting at home napping on a Sunday afternoon. My BGLs will start to go insane right at the point where I really need my mind working – parent/teacher interviews, an oral presentation, networking events, in front of rowdy year 8s, on stage…

ON STAGE.

I had State Champs on Sunday night for calisthenics (it’s a weird Australian sport, I go from looking like this… –>

Screen Shot 2016-08-30 at 9.48.39 PM

to this –> ignore my terrible feet and focus on the fabulous feather)

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ANYWAY

I tested before I went on stage – 6.2 – great! As soon as the music started and I hit my pose behind the curtain, I felt myself start to shake and sweat, and instantly knew that I was low. I mumbled “Shit” as the curtain rose, and willed myself to get through the next three minutes.

Being low on stage is not like being low during ‘normal’ sport – on the court, I can just call time, treat my hypo, and watch someone else fill in for me. It doesn’t work like that with dance – I can’t yell “TIME!” at the judge and stumble off while my friends are halfway through a walkover. Technically, I could walk off, but to get disqualified after all that training…combined with hypo brain, all logical thought goes out the window and all you can think is “Get through this”

Thanks to diabetes, my balance was off as I couldn’t see straight, and thus couldn’t hold myself up in any sort of balance. I fell out of my headstand, right onto my back (it’s still aching, good job diabetes) and crouched into what my sister and I call the “ball of shame” until I could pick up the next movement. Those 4 seconds were so long – I could feel my lip wobble as I looked at the floor and willed myself not to cry. Do you know how hard it is to keep dancing on stage when your brain is starved of sugar? REALLY FUCKING HARD. It’s scary. There is a different move every second, and you have to rely on muscle memory to get you through as you use every last bit of brain power to focus on keeping in time. You can see your hands shake as you go upside down, and your heart beats so hard in your chest it reverberates up into your head and drowns out the music. Everything on stage is an overwhelming, bright, and terrifying blur.

I think what really angered me about this is that I was so frustrated at diabetes. I had practiced so hard for this competition – I had been having trouble with things in that routine, and had been finally nailing them at training. I was ready to smash it on Sunday, and diabetes HAD to interfere at THAT PARTICULAR MOMENT. Not five minutes before, not five minutes after, the THREE MINUTES I was on stage.

I came off stage and instantly cried into my coach’s shoulder (the poor thing still probably has my tears, snot and makeup permanently caked into her top). The combination of a bad hypo (they make me emotional…) plus the frustration of having screwed any chance of a place for our team in that performance, just because of something that was completely out of my control, resulted in me stuffing my face with lollies and crying for a good 15 minutes outside the dressing room.

Sometimes there’s nothing to say about diabetes, other than it SUCKS and has the worst timing in the world. The only reliable thing about it is that it will always choose the most inconvenient time to make things difficult. I can handle being bad at something, and I can handle making a mistake (OK, that’s a lie, but I can accept it…). But when my goals are ruined by diabetes, despite me doing all the right things, that is when I really resent my lazy pancreas. I have been doing everything I’m meant to do, DIABETES GOD, WHAT DO YOU WANT FROM ME?! A prayer? A sacrifice?!

frustrated

Insulin

I’ve been focusing on including poetry in my classroom this term, as a different way of approaching texts and understanding concepts, themes, and issues. It’s been working well for my students, so I thought why not give it a try? They’ll write poems about the issues stemming from Hamlet, I’ll write one about the issues stemming from the syringe in my handbag.
If you’re up for an angst-laden poem, read on my friend.

 

Insulin

Insulin

Clinical, Cold

Stinging, Dripping, Living

Safe, secure; unpredictable, dangerous

Diving, Rising,  Guessing

Well, whole,

Life

 

Insulin

Intrusive, Foreign

This liquid gold turns to golden fat

A lifesaver turned to a life not worth living

A life lived in the mould of ‘perfection’

There’s only so much perfection that fits before

You start to slice off the parts that you can’t hide.

 

Guilt permeates me to the core.

I am lucky. I am blessed. I am insulin.

 

“Think of those less fortunate”

A faceless peer kilometres away does not take away the fear of

Living in a body too big to accept.

 

There is no one type of Type 1

I am my type.

My type is vulnerable.

Vulnerable to the whims of my blood

Vulnerable to the judgements of others

 

My type is fragile

My type slowly builds a wall

Of fat to keep out the looks and flood

Of concern – “It’s not about fat, you’ll feel better”

 

Better? What is better?

Does my mind not rate a mention

While my thighs rub red and raw?

Does my smile go unnoticed

If my belly dares to escape?

Does laughter seem irrelevant

When my arms wobble as I grab my sides in joy?

 

Insulin

 

Three syllables

Two pens

Too much.

 

 

Brain fog

I’ve been absent for a little while, in more ways than one.

My head feels foggy – I can just see where I’m heading, but it takes all my effort to push past it. Diabetes has taken a back seat in the past month or two as I try to use my brain for university assignments, professional development plans, and getting to places on time and with pants on. I’ve started to forget to bolus, because my brain is going one million miles an hour. Is this what getting older is like? I need quiet, I need rest, and I need space to be able to make decisions without diabetes butting in with an incessant hypo.

This  brain fog means my management has been as up and down as my moods. As my educator pored over my upload this morning, she furrowed her brow in confusion. Sunday? Perfect numbers, great ratios, model student. Monday? Manual boluses, no tests.

“What’s going on honey?”
I shrugged, and mumbled “When I have bad days, so does my diabetes”.

I was hoping the new pump I got this morning would help to melt away some of the fog, and give me a bit of a jump start into focusing on my diabetes. But it didn’t, and I shouldn’t expect it to. At the end of the day, a pump is a fancy and expensive syringe. A pump cannot clear the fog from my head, or the confusion from my brain. A pump cannot count carbs, or take away responsibility for me.

I have to focus on my head first, and leave room for diabetes in there. There’s no point burying myself in uni readings and trying to create interventions when my blood sugar is 25 and I’m studying on the toilet. Why bother focusing on a literacy-centred lesson when the likelihood is that I’ll struggle to teach it anyway, having forgotten to  bolus again?

To get rid of the fog, I need to slacken the reins, and bring diabetes back into the running. The fanciest meter or pump won’t do it for me – I’m the only one that can.

fog.jpg

 

 

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’m not going to focus on healthcare professionals in this post – you guys do an incredible job, which I could never do. What I think really needs to be talked about is the accessibility of healthcare. Who can access it, and who cannot?

The word ‘accessibility’ covers a lot of ground – how do I travel to my healthcare provider? How do I get my meds? What treatment options are open to me? How do I get the best care? However, the most pertinent aspect for me (and the only one that I really know anything about, due to earning fuck all) is the financial question of accessibility.

Good healthcare should not revolve around your ability to pay. We are so lucky in Australia to have a public healthcare system, however this system is overstretched and under resourced, and I have a terrible feeling that it’s going to remain like that unless people start seeing the gift that is universal healthcare. People wait months to be seen, while those who can afford it skip the queue. This applies to diabetes as well, many people don’t see an educator or endo due to the fact that we can’t spare a couple of hundred dollars! We’re already stretched with paying a couple of hundred per month for diabetes supplies, add on healthcare costs and you’re stuck eating rice and frozen vegies for the next fortnight. I’m lucky enough to still be young enough to count as a ‘dependent’ on my parents private health insurance, even though I haven’t lived at home for years and pay them every month for that insurance. The pump works for me, and I shudder to think of the situation I’d be in if I had no PHI and couldn’t afford to treat my diabetes the way I need to.

I am SO blessed in my healthcare professionals – I see them though a clinic at The Alfred, and it is all bulk billed. My educator is an absolute treasure and I’m hoping to follow her until she retires, but when I want to have kids, I’ll need to see her privately. With the extra BGL supplies needed during a type 1 pregnancy, as well as all the extra scans and checks, will I have the money there and waiting for her?

It blows my mind that governments around the world are trying to rip up universal healthcare systems (I’m looking at you, conservative British and Australian governments!), when we already have a lovely dystopian preview of what a society that dictates care through ability to pay may look like (hi USA!). Healthcare needs to be accessible to EVERYONE, not just those who have the funds.

If I could choose one way to improve healthcare, it would be to mimic the best version of universal healthcare, worldwide. There shouldn’t be a need for organisations that send insulin to people that can’t afford it,and it’s an absolute tragedy that this even exists. However the sad fact is that there are still people living with a lower quality of life, or even dying, simply due to the fact that they can’t afford to manage their diabetes. We need to find a solution, and fast – because every time someone can’t access healthcare, humanity itself becomes a little less human.

 

Let’s dia-beat-this

The theme of World Health Day is “Beat Diabetes”

I’m usually not a fan of people saying someone is ‘beating’ a disease. A very close friend of mine had cancer last year,  and it would drive me crazy when people said “Keep fighting! Beat cancer!” Like anyone with a disease wakes up in the morning and thinks “I’m going to let my body win today lol”.

What does “beat” mean? I’m assuming we’re not referring to physically beating diabetes, however satisfying that may be. Can you imagine kneeing diabetes in the groin?! Amazing!

Beating a disease can mean so many things. It can mean eradicating it all together, or putting up a good fight. It can simply mean living your life, with your disease right alongside you. I personally think anyone with a disease is ‘beating’ it, simply by having it. On a micro level, we’re all bloody amazing. With the help of meds, injections,  machines living in our bras etc., we beat it by living it.

On a macro level, do we need to beat diabetes? Abso-bloody-lutely. In 2012, diabetes was the direct cause of 1.5 million deaths. WHAT. More than 80% of diabetes deaths occur in low- and middle-income countries, which makes it even more important that we beat diabetes. Having a disease shouldn’t beat you down, or prevent you from living the life you want to, but the depressing fact of the matter is that with so many varying levels of access to and affordability of diabetes supplies around the world, this disease CAN stop you. People are spending their entire earnings on keeping themselves alive! Check out T1International to save me ranting on this issue.

By beating diabetes i.e. eradicating diabetes, we can improve the lives of everyone living with diabetes around the world, especially those who are the most vulnerable. However, there’s something important about this goal that we all have to remember.

People with diabetes are not a burden.

Diabetes is a burden. People with diabetes are not.

When talking about beating this disease, let’s keep our focus on what’s important. No-one asks to get diabetes, of any type, and it’s imperative that we focus on kicking diabetes’ butt, and not the butts of those who have it.

 

 

 

 

Getting through

I’ve just finished my first grad year.

I am exhausted. My body feels like lead, I can’t concentrate for more than 15 minutes, and my BGLs are everywhere. Again. Lack of routine and having no concentration (“Did I bolus? Where’s my pump? Did I test?”) means that my blood sugars look like a rollercoaster, and I feel like I’m living on one. Wake up at 15, fall down at 2…I’ve pushed my body the entire year, and I’ve finally stopped for more than 24 hours and all of a sudden my body doesn’t know what to do with itself.

“YOU GET A COLD! YOU GET A MIGRAINE! YOUR WHOLE BODY GETS SICK! YAY!”

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However, do you know what’s underrated? What helps with this fatigue and feeling utterly crappy?

Cats. Dogs. Warm fuzzy pets who sit on your lap and just want a good scratch under the chin, who don’t judge you when all you do all day is binge watch “Please Like Me” and eat random concoctions of food (avocado and chilli flakes anyone?)

Insulin. Migraine meds. Cat. That’s what my prescription should be.

 

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