The first time

I was going through my old Tumblr to find my go-to chocolate cake recipe, and stumbled upon this… my first ever IBD-related blog post, I suspect. 25 May 2011. I thought I’d post it here for posterity.

Those were the days… incredible pain on the daily, uncontrollable urgency, no painkillers, incapable of properly attending lectures. But also, relatively simple meds with less impact on my total system. No surgery, no steroids, no biologics. Not even my full-blown diagnosis yet. Anyway, without further ado, here’s 20-year-old Briar’s words about IBD:

Continue reading The first time

magic juice – adalimumab adventures

I remembered that I am very nearly due for my next jab, and realised that I’m all out of meds. I’m not very good at maintaining a healthy array of fridgular options, but I can usually be depended upon to have a syringe or two of expensive medication tucked in between a Lush face mask and a block of Gouda on the edge of turning.

***

Last time I picked up my Humira, I had the sudden thought that it’s the most expensive thing I ever put in my backpack these days. Two syringes technically cost more than my MacBook Air. Back when I was on weekly doses, I would pick up four at a time, and that would be approximately $3600 value, by my understanding. So that’s even more than my flute’s worth. If I took my flute anywhere these days.

Fortunately, the three month dose only costs me the standard $5 prescription fee. Thanks, NZ.

***

I went through a phase where I was incredibly needle-phobic. It was after my last surgery. I guess my abdominal nerves were feeling particularly antsy. Once a week, I would dissolve into tears, and spend half an hour or so working up the nerve to grab the pen and click it against a pinched fold of stomach or thigh. After a little while, Uther started doing it for me every week. He’d proven his worth with actual syringes when I was needing daily enoxaparen injections following the surgery. His mum’s a doctor and his dad’s a nurse, and with a theatre background it only makes sense that he’d be capable of taking on the role of medical aide, I suppose.

***

One week I forgot to pick up my prescription until it was a few days overdue. I wasn’t feeling too great, so thought I’d best deal to it immediately. It was the middle of the working day, so I went to the stock room – via the lunch room and office where I advised people to ignore yelps of pain and washed my hands – and laid down on the little couch usually used for hungover naps and reading sessions and hiding from the floor when the world’s too much.

I didn’t yelp. I unpackaged the pen, tearing off the paper that covers its little plastic home. I ran through the steps that Lisa the IBD nurse at Wellington Hospital walked me through so carefully: check the name, the dose, the expiry date. Wobble it to and fro to check that there’s the bubble in the liquid. Rub the pen between clean hands to warm it up, if you’ve taken it freshly from the fridge. Apply the alcohol pad to the designated injection site in a circular motion – be sure to rotate between different locations.

Despite my abdomen housing all of my major worries, the subcutaneous fat layer of my stomach is more cooperative than that of my thighs. I switch from side to side: my right, fleshy but unmarked (except by small shadows of incisions); and across the scar tissue zip that divides my stomach in two, the left side, where I must be careful. The skin there is interrupted by the puckered divot that was my stoma.

I remove cap 1 (pale grey; protecting the needle) and cap 2 (maroon; avoiding misfires). I pinch skin where the alcohol is fresh, cool and clean. I place the circular grey end to my skin and prepare to click down on the count of:
1
2
3
*bang*
1
2
*whimper*
3
4
“fuck fuck fuck fuck fuck fuck”
5

At the count of five, usually I’ll have heard the whooshing sound that means It’s Done. You’ve Done It Again, Clever Clogs. You’ve Stabbed Your Stomach And Made The Expensive Magic Juice Go In. Often, though, I’ll keep counting:
6
7
8
jesus CHRIST”
9
10

Especially if it’s one of the times that I’ve had gritted teeth and a swirly head and I’m not quite sure if I heard the whoosh or not. By the time ten seconds are up, everything is always done. I check the barrel of the pen, and see the yellow marker in the window where I checked for the bubble before. Everything has worked.

Sometimes, blood will bead at the entry site, but my dedication to wound care depends partly on how much I want to garner sympathy. Every now and then, I reckon, with chronic conditions like Crohn’s, you’re allowed to be a little pathetic. I find a plaster in the first aid kit and gently apply it to my skin, wincing as I pull poorly chosen jeans back up.

***

Humira is the single biggest pharmaceutical cost in New Zealand. At least, the figures that I saw at the end of 2014 stated that. Perhaps it’s changed since then, especially as the field of biologic medications has grown and evolved. It’s used for Crohn’s, for rheumatoid and psoriatic arthritis, for ankylosing spondylitis, for psoriasis. Chronic conditions. For many people, it’s the one thing that really makes a difference – and so, it’s used widely within those circles, at least at the severe end of things, and that adds up.

Because of this cost, it requires special authorisation numbers, and for Crohn’s, at least, that means filling out a CDAI (Crohn’s Disease Activity Index) form to prove that it’s doing what it’s supposed to for you, and that you need to stay on the expensive fancy medication. When you’re going through a patch of relatively wellness, it’s a moment of being reminded that you’re constantly being examined, looked at, considered. Not always for your own benefit.

Eventually, I’ll have to stop it. Because of the cost. But for now, I don’t know where I’d be without it. Nothing else has ever worked for me. I’ve said that before. These days, my total medication regime is down to three pills a day and one Humira jab a fortnight. And two of those pills aren’t even explicitly Crohn’s-related! Sure, I have Tramadol and ondansetron and Gastro-soothe ready to go just in case; I have tail ends of iron meds and a few rogue prednisone tabs rattling around somewhere. But compare this to the fistfuls of pills I used to take daily, along with a full-blown hospital infusion every six weeks. 8 Asacol, however many prednisone the day called for, azathioprine, at the very least a Tramadol and two Panadol – often enough, two Tramadol just to get out of the house and more as needed throughout the day.

I am not cured. There is no such thing. But I can live my life, for now. Thanks, Humira. I don’t know why I suddenly decided to write a 1000-word ode to medication, but here we are. Long may my special authorisation numbers be approved.

marking time / health misadventures

It’s two years and a day since I had surgery. Unexpected, life-saving, emergency surgery. I was in incredible pain before it, and different kinds of incredible pain after it.

Before the operation, I was doubled over. Stabbing sensations, rolling walls of abdominal agony that would come and crest and fall just because I moved a fraction of an inch too far. I didn’t know what was wrong. I mean, on a grand scale, I did, because when you’ve got Crohn’s, it’s a fair bet that what’s ailing you somewhere in the digestive tract is Crohn’s related. But it was a different kind of pain to the pain I’d tolerated at varying levels over the years, that I’d cried out from, that I’d tamped down with multi-pill doses of tramadol days on end just to make it to work.

In hindsight, with that kind of painkiller regime, maybe I shouldn’t have been working at all.

But that time was so long ago, I’d been doing so well… and now this? Mystery abdo pain, lower left quadrant, fever? Not what I’d been led to believe was my excruciating ‘normal’.

And after… after was new, too. After my first operation, I’d felt grotty, but better. Planned surgery, even when it’s desperately needed, is a lot more gentle on the body. The surgeons know what to expect. They have time to plot things out, to talk you through everything. This time, I’d had a CT scan one day, and by the end of the next day, I’d had a multi-hour open abdominal surgery (no adorable little laparoscopic lines this time) to remove 15cm of large intestine and to remove a stoma (well, turn it into a surgical drain, first) and to reconnect my pipes, so to speak.

I’d been grotesquely unwell – but chronic illness warps your perception of pain. When your ‘normal’ state has arisen slowly, your illness beating your body down further and further, bit by bit, you adjust. It sucks, and every moment can be painful or difficult, but you adjust. The fact that I acknowledged that this pain was different, mysterious, possibly dangerous was a big change in my relationship with my pain. Every other time in the past when I cried out in the night, when I wept in bathrooms, when I clutched my stomach in agony – every time, I had explained it away as ‘this is just how it is, and tomorrow I’ll be a little better’.

But fever, that was different. And now I know better, too – the nurse reprimanded me (gently, kindly, softly) for not coming in sooner. I should have known better then. I remember Googling ‘what temperature means you need to go to the emergency room?’  – I didn’t really think about the fact that my maximum, my tolerance, was probably different from the average able-bodied person.

But I went, and thank god for that, right? Because intestinal perforations aren’t the kind of thing that spontaneously correct themselves. They’re the sort of things that cause sepsis and death.

But I won’t go into too much more detail, because I have a piece of writing about the surgical experience coming out in a journal sometime this year, and I don’t want to inadvertently steal skerricks of feelings from that.

Two years, though. Two years of ‘good’ health. Two years of healing and hiccups, and only one colonoscopy. One! How wild is that?!

Here’s to it continuing. I may never be normal – my exhaustion, my depression, my strange curly dietary needs, my phone alerts every couple of weeks to inject – but I manage to be a better version of myself now than I did before.

A year(ish) of music

Been a while since I’ve linked to pieces that I’ve written. I mean, admittedly, I’ve not done a huge amount of extra stuff this past year, but my usual glorious New Zealand Musician articles have kept on keeping on.

So here’s a wee round-up. (Excludes CD reviews.)

Anna CoddingtonMy favourite interviews are the rare occasions when I go to the subject’s house. Anna and I chatted while her little bub napped and giggled and had an occasional squawk. He’s delightful – so is she.

PrizegivingWellington gang who make good tunes! We had a good natter over Skype.

Huia. Another glorious home visit. We sat in her little lounge looking over the bush of the Waitakere Ranges and drank coffee and talked about music and communications and motherhood and cats.

Purple Pilgrims. Arguably my favourite musical discovery of the year. Dreamy electronica with all kinds of fascinating instruments to create their own unique sound. And both the sisters (Clementine and Valentine) are amazing beautiful fairy women.

Shunkan. Okay, so this was technically the end of 2015, but I don’t think I’ve mentioned it yet. This was my first fully-fledged cover story, and I felt so goddamn proud. Plus their brand of up-tempo LA-meets-Invercargill rock is just perfection.

And coming soon on the website will be my interview with Paul Cathro and a piece on The Eversons. Keep your eyes peeled.

movement

This time a year ago, I was in Wellington. But I knew I’d be leaving it behind soon.

Now, I’m in Wellington again, but only for  few days. I’ve only been here a couple of hours and the weather is broody and windy and typical, but it really feels so good.

I hold tight to the knowledge that my new job has a Wellington office too, in case the opportunity to return comes up.

Wellington is where I fit in. It’s where the city’s pulse is as close to mine as any city could get. Auckland is ‘home’ – in the sense of it’s where I was born, where I grew up, where I currently live. Wellington is where everything makes more sense.

I’m sitting in Uther’s Mum’s lounge, surrounded by empty bookshelves and a piano. I have a sore throat, and the plane’s landing decent was the roughest I’ve ever experienced. But it’s still the place I want to be. I picture a future, and it’s here.

For now, though, life and work means Auckland. It could be worse.

I have no plans, except to absorb the essence of the place for a little while, and to see as many people as possible. It feels like it’s been no time at all.

honiara essays

I have a million things to still write about Honiara. Here is what will eventually (touch wood) eventuate:

  • My first foray into sports writing, by way of describing two separate volleyball matches between various teams made up of local folks working in the legal sector. The High Court has two dusty volleyball courts right next door. This is one of my favourite things about Honiara.
  • Writing something about Seif Ples and the amazing work that the women who work there do to help domestic violence victims in times of absolute crisis.
  • The food. Coconuts. Cold pineapple straight from the fridge. Banana loaf made with small slightly red, very sweet local varieties. Ngali nuts. Expat pizzas. Expensive savoured chocolate. Cocomon smoothies. Bush lime everywhere.
  • The clothing. The bale shop offerings in a rainbow of colours and shapes and all possibly treated with some kind of nasty chemical somewhere en route so everything needs to be adequately washed before wearing. The bizarre mix of t-shirts that turn up: Megadeth, Zumba, Spongebob, Marilyn Manson, ‘MAFIOSO’, Deadmaus, Cookie Monster.
  • Pijin. A village called Dereni, because it’s right beside a drain site. ‘Tanggio tumas’ raising a smile from locals in the market. ‘Rais blong yumi long Solomon’.
  • A drunk public servant called David from the far west of the island group describing how much they love Kiwis back home and how every year in August they celebrate New Zealand Landing Day, when Kiwi troops arrived there in WW2.
  • Lyndon and his awesome kids and entrepreneurial mind and amazing view out towards Central Province.
  • Everything on Savo.
  • The fact that I desperately want to go back.

coriander, basil, corn

The first plant I have ever successfully grown is a small pot of coriander.
I can’t even claim to have grown it, really, just not let it die. It’s in a giant teacup that I inherited when a flatmate four flats ago left to go overseas. I kept fruit in it, but my kitchen is tiny and the teacup was relocated to a bookshelf when a rice cooker took countertop precedence. There were still oranges and kiwifruit in it, and they sat there forgotten, gently moulding.

When I remembered, I put the bowl outside and it’s lived there ever since. The pot of coriander found a home there when I decided to take a punt on a live pottle rather than a sprig sealed in plastic for the same price. Some leaves have turned reddish, then brown, and I’ve plucked them when I remember. But fresh shoots of green appear, with that bright, right flavour, and the inclement Auckland summer showers are a pain for my washing but brilliant for my laissez-faire approach to gardening.

Today, I needed basil, and I brought home a pot that’s the Mediterranean twin of my coriander. We’ll see if this cycle of success can continue.

 

Over the fence, there is corn. Corn, in the middle of a backyard in Auckland. Corn, and a tree of unknown botanical origin, but one that monarch butterflies like to cling to in autumn. On one windy, terrifically unpleasant day, there was an orange and black blur and then a monarch perched on the boughs as they were buffeted in the the wind. Clinging on, holding tight and waiting for the storm to be over. There is a tree that bears fruit that I don’t recognise. There are sometimes tūī, which make me feel like maybe I could be back in Wellington, where the central suburbs are more rife with beautiful wildlife. This little pocket of Grey Lynn, near the park, is an anomaly for Auckland. I come from here, but maybe the emphasis should be on the ‘from’. The beaches, yes, the pōhutukawa, the jobs. But the people, the soul, the sparkle – it’s empty. Auckland doesn’t feel like anything, there’s no sense of collective spirit. Take me back to Wellington, where community feels real and the culture is more confident.

 

Tomorrow I start a new job. While there are always numerous factors that played into the decision to take it, many of them come down to a desire to both push myself and alleviate life and financial stress. Once that burden is taken away, I’m hoping I have the spare ergs at the end of each day to sit and write. Even if it’s just a blog entry prattling away about coriander and basil and my disdain for Auckland.

 

I don’t really follow sport, and neither does my sister, but once, our dad was watching a cricket game and she was around. ‘That’s Corey Anderson,’ Dad said of one player.

‘Corey Anderson?’ Merf asked. ‘Also known as Cilantro Kid?’

0

My laptop has been dead for two months.

I have no idea how much it will cost to fix, but I’m pretty confident that I can’t afford it. 

So I haven’t been writing, except here and there on paper. And at work, obviously, but that’s a little different from what I’d be doing in my off-time. 

But I’m going to try to get back on board, even if it means wearing out my thumbs. I have a phone. I have an internet connection. If I can stream Netflix to my TV from here, I can write a few blog posts here and there.

My right thumb hurts already. Joint pain at 26. Auto-immune disease that can cause joint issues and medicine that can cause joint issues and relatively early onset arthritis just one generation above me…

Anyway, here’s hoping.

NZ Music Month – Day 1 – LADYHAWKE

Ladyhawke
Ladyhawke at Big Day Out 2010. Photo by yours truly.

I’ve been a combination of overworked, overwrought and overtired since I kicked off this site, so it has started to feel like a bit of a lost cause at times.

But projects with an end date sometimes feel more achievable, so how about this: my take on NZ Music month. My opinion doesn’t necessarily have any more weight than any other person’s, but I write about music on the reg for NZ Musician, so I have some sort of idea what I’m talking about.

Particularly, though, I’m a fan of the badass women of kiwi music.

So for my version of NZ Music Month, I’ll put up a song or two from a different female artist or female-fronted band each day. And talk a bit about my feelings around the musician and/or music. It’s only 31 days. What could go wrong?

Let’s kick it off with Ladyhawke.

I remember watching the My Delirium video on AltTV (RIP) in my dad’s lounge, back when he lived in a more accessible kind of middle of nowhere (the corner of Scenic Drive and West Coast Road, rather than the Solomon Islands). It wasn’t exactly the sort of genre that I was necessarily devoting myself to at the time – though I was in my first year of uni at the time, and starting to come to terms with allowing myself to like more than garage rock, riot grrrl and punk cabaret – but it was catch as hell. I realised that I’d also heard Paris is Burning not long before. It was such a perfect juxtaposition against the bush outside the window. I was hooked.

I still lived at my mum’s out in Botany at the time. When my friends and I went to town, and drove home together, we cranked Ladyhawke, and I can still remember one of my friends (drunk) attempting (so drunk) to sing along, but giving up except for each time that ‘HEY’ happened in My Delirium.

I bought the French language version of Paris is Burning on iTunes. ITUNES. It’s Paris s’enflamme, and it’s arguably even better than the original, accent aside.

I saw her at Big Day Out in 2010. Back when that existed. It was great. She is great.

I wasn’t as sold on the single from her second album, Anxiety, though given the name I really need to go back and give it another go. But album three is on the way, and my anticipation is back on top.

This is from Ladyhawke’s forthcoming album, Wild Things. It’s coming out the day after my birthday, which is excellent. I’m excited. You should be too.

waiting. and then. and now.

I worked a regular forty hours last week. Then I hopped on a plane and went to Wellington and stayed up until 2:30am catching up with beautiful people.

I left their house at 7:20, walked down the hill from Brooklyn. So that I could get some early morning cold air into my lungs to wake me up.

I worked from 8am till 7pm, because that’s what you do in the festival. I caught up with other beautiful people afterwards. I realised at my sister’s that night that I hadn’t told her that Virgil was sick. That he was dying.

The next morning, I used a bookseller ticket to go in to the first session of the day. Paul Beavis was reading from his picture books. The audience was full of toddlers in costumes. My phone buzzed partway through. I checked it; it could have been the shop.

Virgil had died that morning.

I had at least eight hours of the day ahead. And a final catch-up with beautiful people.

I compartmentalised. I worked through the day. I cheerfully greeted people. I had gravy fries. We drove up Wright’s Hill and looked out across the city.

I went to the airport again. Flew home with Uther. Went to bed. Woke up. Went to work.

I read a Facebook post about funeral details. Someone commented asking if a particular vehicle they had seen near the house had been the sort of people who take bodies away taking Virgil away.

I think that was the really, truly, sinking in moment.

So now, I am allowing myself to feel the pain of loss. For myself, for Charlotte and the girls. For Maggie. For the rest of the family.

For the world, too. Because everyone who knew him loved him, of that I’m sure. You can’t not love that kind of spirit and humour and passion. The hours and hours I have spent around him seem woefully inadequate now. The last conversation, over two years ago – because my timing in moving to Wellington was not made for this eventuality.

Nothing could be, though, could it?