An essay in five parts, originally written for a CWRT700 portfolio at AUT in 2019.
MORPHINE AND KETAMINE
“Morphine is used for the relief of moderate to severe pain such as after an injury, or operation or pain caused by a terminal illness such as cancer.” (Health Navigator NZ, n.d.)
Continue reading EnduranceI 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 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.
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.
When I talk to people, I speak freely. I open my mouth, and words come – thoroughly rehearsed, to a point. Every time I tell my mirror about my life, it’s a slightly different rendition of the same song. This is how it goes.
In high school, I was a swot. I went to a posh school, I was a high achiever, I was a musician. I didn’t even think to be rebellious until my last year, and my rebellion was not of the extreme variety. Most of my free periods were taken up with scholarship classes, but swot that I was (am, at heart) I had far too many, and three sessions overlapped.
So on occasion, I would tell art history I was going to French, French I was going to Spanish, and Spanish I was going to art history, and spend the fifty minutes feeling guilty while scribbling rambling poems in my binder instead. I got a second piercing in one lobe. That was my acting out. Continue reading The Crohn’s Saga (to date)
We have heard this morning about new developments within TPPA talks, after several days of delays brought about by continued discussion on various topics, including dairy, the automotive industry, and biologic medications.
People understand what dairy means to New Zealand, and what the automotive industry means to other players in the TPPA, but ‘biologic’ is something of a mystery word. Some articles refer to cancer sufferers, some go into no detail at all, just that word, ‘biologic’.
It seems like it’s important for people to understand the significance of biologic medication for individuals with a variety of different conditions – and why it’s particularly important that issues like patents dealt with reasonably.
At their root, biologic medications or biopharmaceuticals are those derived in some manner from biological sources, rather than created chemically. The category can include vaccines, chemotherapy agents and blood products – but some of the most well-known biologics are immunomodulators that are used in the treatment of various inflammatory diseases.
‘Inflammatory diseases’ covers some things that you might never consider to be related. IBD (inflammatory bowel disease – most often Crohn’s or colitis), rheumatoid arthritis, ankylosing spondylitis, psoriasis – these are all diseases involving the immune system that have severe inflammatory components – whether it’s joints, skin or intestines. All can have major complications. All are chronic conditions that the patient potentially has to deal with every day of their lives. There is no cure, there is only treatment. And, you guessed it – biologic medications are the frontline of care for such conditions.
Biologics are complicated. The molecules of the drugs themselves are highly complex – and because they are taken from cells rather than cooked up to a recipe by chemists, when patents expire, things get a little tricky. The original developer company does not have to provide any original cells or materials. Competing companies can access the final publicly accessible product, but that’s about it.
So unlike situations with ‘regular’ drugs, where there’ a particular combination of compounds to put together, and that’s the drug, biologics can’t be perfectly replicated. Instead, competing companies can create what are called ‘biosimilars’, from their own research into the original product. There is rigorous testing in place before these biosimilars can go on the market – they are even more tightly investigated and controlled than the original biologic. So if they make it to market, they are a viable alternative.
Alternatives are great. They create competition in pricing, which results in a cheaper product to the consumer – which in a country like New Zealand means both the tax payer and the patient themselves. And pricing is a huge issue here.
Case in point: adalimumab. Currently known mostly by its brand name, Humira, adalimumab is used in the treatment of all of the inflammatory conditions listed earlier. It is administered via subcutaneous injection – either a pen, or a syringe – mostly on a fortnightly basis. It was, according to Pharmac figures, the highest expenditure medicine in 2014, with a total spend of $62.2 million. This was slightly lessened by supplier rebates, but still. Adalimumab usually incurs the regular $5 prescription fee per three month supply – and this is where we thank our lucky universal healthcare stars, because the actual cost of a two-pack of syringes is nearly $1800.
This is all good to know. But more important to the issue at hand is that the patent expires next year. Which means that all of a sudden, it might not be AbbVie’s Humira that provides the best product at the best price. It might be an alternative version of adalimumab by another drug company. That’s up to Pharmac to decide, when such options become available and legal.
Whichever company’s product is chosen, the price will almost certainly go down considerably. Which means a number of things. Other medications could now be budgeted for that couldn’t in the past. The criteria for patients to be considered for adalimumab treatment could be widened.
Adalimumab’s future looks to be fairly steady, going by information available at this time. But the future of forthcoming biologics is an issue that has kept TPPA negotiators battling it out. The US fought for twelve years of patent protection, claiming it was needed to encourage innovation. Every other nation involved in the talks was against it – affordability being a key factor.
Though it appears that the wording is yet to be finalised, the deal as it now stands is that countries will maintain their previously existing patent periods – five years for Australia and New Zealand. Concerns have been voiced that this is not yet set in stone – Annette King, acting leader of Labour, has pointed out that Doctor Without Borders are claiming it is effectively going to end up being an eight year period. In the coming days, hopefully more will be made clear about precisely what has been agreed to – in practice as well as in writing.
New medical innovations are being developed all the time. For now, adalimumab is a key component to the wellbeing of many patients. Should another biologic drug come along that is more effective, it’s only natural that people would want to give it a go, and Pharmac is going to be able to exercise much more leeway with criteria if the costs involved with funding the drug are likely to drop significantly in five years, rather than twelve.
Regardless of your stance on the TPPA as a whole, the fact that this element of healthcare has been fought for is drastically important.
I’ve been so dreadful at maintaining this lately. Life is busy, and it’s winter. Combine those two things with an eternally uncooperative immune system and chronic blah-blah-blah and I’ve been pretty exhausted when I’ve been in a position to write things. Which is a pain, both for my disposable income and my general creative juices.
So, an update:
In curly health news! I have written a thing for the Crohn’s & Colitis NZ website about my experience living with IBD. I also spoke last week at a meeting of Inner Wheel (a women’s branch of Rotary), along with Brian Poole, the chairman of CCNZ, about my experiences with Crohn’s and associated shenanigans. It was rather lovely, actually – and I won the raffle, which was a bonus.
In book news! I have been reading SO MUCH GOOD STUFF. The Man Booker Longlist has some excellent heft to it this year. I adored The Chimes, by very lovely kiwi Anna Smaill , and hope like hell that it wins – but at the same time, A Little Life by Hanya Yanagihara is astounding. I haven’t felt that torn apart by a book in a long time – possibly ever. Part of me thinks that Yanagihara might be the first person to take the Booker, Pulitzer and the Bailey’s (formerly Orange) prizes. It’s only the second year that a person could really be eligible for all three. Maybe we should have a draw for the Booker and Bailey’s? Could we do that?
Of the ‘Booker dozen’ I have also read Lila by Marilynne Robinson, which was also excellent. I’ve also got Anne Enright’s The Green Road on my bedside stack, but after I’ve wrangled that one, I might wait until the shortlist is announced, just to pare down my list a little.
I’ve been continuing my radio reviews, still primarily on Newstalk ZB, but I’ve nipped over to Radio NZ once, and will hopefully do so again. So far, I’ve talked about The Mime Order (as previously mentioned), Aquarium by David Vann, The Reader on the 6.27 by Jean-Paul Didierlaurent, The Villa at the Edge of the Empire by Fiona Farrell, The Age of Earthquakes by Douglas Coupland and, most recently, Mislaid by Nell Zink. All have been excellent, and have provoked interesting discussion in the studio. I’ll try to do some written bits and pieces on at least some of them at some point.
I’m also trying to stay on top of NZ books, naturally, and am about to get back into The Pale North by Hamish Clayton, after putting it on a brief hiatus while getting on top of things needing review or other immediate attention. I’ve also recently gotten through New Hokkaido by James McNaughton and The Predictions by Bianca Zander – and the previously mentioned The Chimes and The Villa at the Edge of the Empire are both NZ books too.
The second Rat Queens trade is out, and I’m verrrry slowly working my way through it, so as to make it last as long as possible.
And, most recently, I’ve just finished Margaret Atwood’s forthcoming novel The Heart Goes Last. Which I have mixed feelings on. I enjoyed it – I just didn’t adore it as much as I’d hoped I would. Again, I’ll try to write something of more substance soon. I think I was – we all were – spoiled with the expansive world and characters created in the Maddaddam trilogy – but The Heart Goes Last is standalone and tops out at just over 300 pages, and is accordingly much more limited in its scope.
My to-do list is full of exciting things. The Enright, I’ve already mentioned. I also have an ARC of the new Jonathan Franzen, which will be interesting as I’ve never actually done any Franzen before. But I’ve been hearing immensely good things. I still need to get around to reading my work-birthday-present book, Between You & Me by Mary Norris, which promises to be delightful. I also still need to bash through The Art of Asking out of a sense of curiosity and nostalgia. And there are a million other things on my to-do pile, but to try to note them all would be a waste of everyone’s time. Suffice it to say that I’ll get there, one day.
Also, in book/writing news, I wrote the content for the latest Unity newsletter, which was deeply satisfying to see come to fruition (I’d managed to forget the joys of the print production process already, but it was good to be reminded of how things operate). It’s all online in PDF form now, but you can also grab a print copy if you’re in Wellington or Auckland.
That ‘update’ turned much more in-depth than I’d intended. Ah, well. Consider yourselves informed.
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.
