I broke my ankle.
In three places.
And dislocated it.
And tonight is my tenth night in a row in Auckland Hospital.
I arrived in an ambulance on a Wednesday.
I was meant to be flying to Honiara on the first Friday.
I’d be back by now if I’d gone.
Continue reading so i broke my ankle…Just because you have objective truths fuelling your fatigue doesn’t make it any easier to accept.
I am in remission, in essence. But that doesn’t mean that I’m healthy. It means that my CRP levels are acceptable. My ferritin isn’t too bad. I don’t have urgency that inhibits my movements day-to-day. I go to the bathroom more than average but that’s partly because I have less intestine than average. Four or five trips a day is fine for me. There’s no blood, no mucous, infrequent cramps, relatively infrequent full-blown diarrhoea.
Continue reading FatigueI 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 timeI 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.
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 couple of weeks ago I wrote a guest post for Sarah Wilson’s Writehanded website. It’s an excellent blog about important health and advocacy issues, and it was wonderful to be included.
Here’s a snippet:
Yes, when I’m clothed and in company, I look pretty darn normal. Pink-cheeked, four limbs, certainly not frail or underweight. But when have those sort of things ever really been barometers for health?
Even the most uninformed people in NZ society are aware of diabetes, for example. The average diabetic will be, well, average looking.The average IBD patient is equally average. Some of us are underweight because our disease strikes our small bowel and we can’t absorb nutrients properly. Some of us are overweight because the diet that we can safely consume without physical pain and internal ulceration isn’t terribly nutritious – or because we’ve been on a course of steroids for months and the puff just keeps on coming. On the street, we’re just one of you, going about our business, because that’s what you have to do when you have a chronic illness – you get on with things, as much as you can, whenever you can.
I wonder if FW would be saying ‘You look pretty healthy to me!’ if he saw the cupboard I used to have that was brimming with colostomy supplies. Or if he went to grab another beer from the fridge and saw my Humira pens nestled between the maple syrup and the kewpie mayonnaise. Or if I had, as I was a little tempted to, shown off my wicked scars, which are still red and raised and some of which still require biweekly nurse visits, some two months out of surgery.
I also have a couple of pieces in the latest NZ Musician magazine – I’ll link to ’em when they go up online.
In the meantime, here’s a new picture of my face.
‘
You’re welcome.
The end.
I trim the stems of
hospital tulips with my
ostomy scissors
My plans to blog on the daily were slightly messed around by ill health. After several days in a row of leaving work early due to feeling rather deathly, I finally relented and went into ED on Friday night, thinking that they would give me some fluids and maybe some codeine and send me on my way. But now it’s Monday afternoon and I only just got home a few hours ago.
So to make up for the days lost to a phone-only internet void (and, you know, being hospital-level unwell), here is a selection of random, occasionally drug addled, haiku/short poetry from those lost days.
HOSPITAL HAIKU
I trim the stems of
hospital tulips with my
ostomy scissors
His fingers fly
Writing; counting syllables
Of five, seven, five
The nurse’s glove broke
Latex gave way to warm flesh
Precious skin contact
Mail, Facebook, Twitter
Textual interactions
Words to keep afloat
Tonight at midnight
Lost in an internet blur
I may read Buzzfeed
Arms take turns itching
Fingers one-by-one on fire
Then last are the shins
Pillows that whistle
Every time you try to
Gently rest your head
White blankets and sheets
Lightly patterned white/blue gowns
Pale ghosts at night
I would try to sleep
But I have already and
The steroids say no.
Now waiting, waiting
Free me to the outside world
It’s almost sunny
Orange juice is a
Generous term for this stuff.
…and I’m sick. Naturally! Evil vile lurgy winding its way through the bookish types of Wellington. Hoping that tomorrow dawns a little healthier. It’s really an inopportune moment for this to be happening.
That being said, while being attached to my bed and/or couch (bed yesterday – forced self to couch today) I have been productive – I’ve written a book review for Booksellers NZ, I’ve made a ‘Briar Does Books’ video for reasons not altogether known (watch it below), I’ve interviewed a musician for one of two NZ Musician articles I’m currently working on (busy busy bee!). I’ve also ‘finalised’ the Sargasso Press website (as much as a website is ever finalised) and am quite satisfied with how it has turned out.
I’ve also been Making Plans of various sorts. Big publish-y projects – more on that as it develops. And it will. I’m determined to make it happen. Fitness/fun-time plans, like finally learning to skate properly. I’ve had the derby skates for about five or six years now, about time I actually used them.
It’s going to be grrrreat.
Now, back to Doctor Who and healing vibes and tannin-tummy-regret.
CURRENT THINGS THAT ARE HAPPENING
READING: Wake by Elizabeth Knox (among other things)
WATCHING: Season 1 of Doctor Who / Season 4 of Torchwood
LISTENING: Eb & Sparrow (self-titled LP)
DRINKING: Harney & Sons Vanilla Comoro black tea. YUM.
Pain. Drowning crinkle-cut curled-up flesh in whitest milk. Obligation lifts the cup, pours it in. No foil-wrapped magic tricks want to have anything to do with it; the capsule sinks below the surface before it can ignite. Flickers as a match might, but with the untiring power of the glowing ember.
No end in sight. The worst days were better, because hope was still cradled that the broken parts could be cut away and mended, dead branches and grafts. But the poison is in the tree and eventually there will be nothing left but dried parts broken on the forest floor.
All the words that a dragged-down mind can label itself with, be labelled with. Anxious. Depressed. Pathetic. Lonely, lonely, so lonely. When I stood alone in drifts of snow in another place, at least mind and body were whole, or still clinging together in the hopes of human unity. The future was allowed to be clouded.
Now I must clutch myself, squeeze my own arm, dig nails into my palms. The crescent shapes do not leave scars, not yet. Record videos intended for a public audience, a forum of confession and reality. Then delete them, because tears are not becoming, not in real life and not in a little box on your screen that you can escape from when you feel uncomfortable.
No one to do the holding, the whispering. Nobody to tell me that I’m being crazy, that I’m more than a foolhardy experiment gone wrong, that my best days aren’t necessarily in my past, that it’s okay, it’s all okay. That I can be loved again, that I’m not ruined by or defined by my body, by my awful, uncooperative, sliced and reconfigured body. Nobody. No one to rely on, to call in an hour of need, no family to go and hide with when it’s too hard to be alone.
Silent nights in a house of extremes – the joyful noise of the happiness of others, going on all around, or the silence that hangs more and more, as the nights close in and nobody else is home. A kitchen untouched – what kind of energy do you think I have? Expend what precious little there is on cooking, when I’ll either be in tears from the blandness, or in tears from the pain?
The pain, the body of pain. The mind draped in it.
I am drowning in implications and connections. I had my first specialist appointment in months.
He didn’t suggest prednisone, so thank gods for that.
But I am back on potent-as-hell medication. New stuff (for me, not for the pharmaceutical world) so perhaps it will work better. And a scope on the cards next week, after which I will almost certainly be going on Humira, as long as I fulfil all of the necessary criteria. Humira, by the by, is the brand name for adalimumab, a TNF (tumour necrosis factor – mmm, tasty) inhibiting drug that is used in the treatment of rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn’s disease, ulcerative colitis, chronic psoriasis and juvenile idiopathic arthritis.
Thanks Wikipedia.
TNF inhibiters are more commonly known in IBD circles as ‘biologics’, for some reason. Also, I’ve already been on two of them (infliximab and etrolizumab) before. So, you can maybe understand that I’m not exactly jumping for joy at the idea of this magical solution. And for extra added fun, Humira is self-injected, and by most accounts, is rather painful.
I nearly cried when I was in the supermarket walking through the fruit section, because I really, really wanted to grab some delicious healthy stuff and eat it. But I can’t. I just can’t. I am yet to find a fruit that does not make everything much worse. Fructose is the devil. Acid is the devil. Food in goddamn general is the devil. I forced myself to buy ‘acceptable’ foods in terms of ‘things that my gut can handle’ – and I left with plain white pita bread, chicken, and chocolate biscuits.
My exciting diet, ladies and gentlemen.
The other super great thing (not actually super great) was being reminded, more explicitly this time, about how my intestinal and surgical situation has means that I need to think about ‘family plans’ sooner rather than later. ‘You don’t want to leave until you’re in your thirties,’ sayeth the doc. I don’t want to get all Rachel-on-Friends (per this video), but what kind of a timeframe does that really leave a misery guts of a mid-20s gal?
Combine this with the fact that I no longer have a de facto niece and nephew around to fill my baby-interacting needs, and it’s all rather a lot to deal with.
Fun.
