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.

Shouts from the void…

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.

curled-up flesh

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.

 

world IBD day

It is May 19th – at least in New Zealand, it is.

On this day, the following things have happened throughout history

Anne Boleyn was beheaded (1536)
Nellie Melba, the soprano and namesake of a delicious dessert, was born (1861)
Oscar Wilde was released from prison (1897)
Pol Pot, leader of the Khmer Rouge and totalitarian dictator of Cambodia, was born (1925)
André René Roussimoff, AKA André the Giant, was born (1946)
Marilyn Monroe sang ‘Happy Birthday’ to JFK (1962)
Tu’i Malila , the world’s oldest known tortoise died at 188 years old (1965)
Jodi Picoult, Queen of Depressive Chick Lit, was born (1966)

Nowadays, it is apparently Malcolm X Day in the US, St Calocerus Day in the Eastern Orthodox Church, and Greek Genocide Remembrance Day.

So a lot goes on on this day. But there’s another importance to this particular date that is of significance to me, and to many other people, even if they don’t necessarily talk about it as loudly as I do.

It’s World IBD Day, one particular day given to talking about Inflammatory Bowel Disease. Some of you will have read my pieces on IBD in the past, some of you may not have. So we’ll go with a basic level of explanation.

The first thing to remember is that IBD is completely separate from IBS. IBS, or irritable bowel syndrome, is fairly common, and whilst unpleasant, it is rarely a serious disease. Don’t get me wrong, I wouldn’t wish uncooperative insides on anyone, but the reality is, it pales in comparison to IBD, so it seems reasonable that many of us with IBD get a little frustrated when people confuse the two. IBD is, by most accounts, autoimmune, putting it in the same family as lupus and rheumatoid arthritis. We just happen to have immune systems that really, really hate our guts (ha!).

It is understandable that some people are quiet about their Crohn’s, or their ulcerative colitis (the two major forms of IBD). We have been conditioned to not talk about things to do with digestion – tell us about your migraine, sure, or your asthma, but we don’t want to hear about the fact that you have spent your day doubled over in the bathroom. So people keep silent. They avoid bringing up the subject of their pain and suffering, even with their doctors. I am one such culprit. I started presenting symptoms about a year and a half before they got to the point that I knew I really couldn’t go on with the way it was. I was a twenty year old girl, I wasn’t prepared to talk about ‘gross’ things with anyone. If I had spoken up sooner, it’s possible that things could have gotten under control more thoroughly, without having to go down the rocky path that I ended up having to take – that I am still very much on.

Here is a sample idea of what twenty-four hours in the life of a really bloody stubborn gal with majorly flaring IBD is like. I’ll start from going to bed, because that’s probably the best way to illustrate it.

10pm – Last minute bathroom visit before bed. Worst of the day is hopefully over, some pain, probably still some blood, maybe twenty minutes spent dealing with it. Take evening medications (4x Asacol, 1x prednisone, 1.5x azathioprine, 2x paracetamol because the doctors haven’t prescribed you anything stronger yet, 1x citalopram because the prednisone has caused fully fledged depression to finally take hold). Go to bed.
11pm – Still can’t get to sleep, too wracked with pain, clutching stomach, possibly sobbing quietly into pillow.
2:30am – Woken up by insides. Pain. Go to bathroom. Pain. Back to bed.
5am – Woken up by insides. Pain. Go to bathroom. Pain. Back to bed.
6:25am – Woken up before alarm by insides. Go to bathroom. Start getting ready for the day – this involves making sure that an ’emergency’ kit of sorts is in the bag.
6:55am – Second ‘official’ bathroom visit of the morning.
7:10am – Leave house, get to the porch before doubling back to go to the bathroom again. Keep in mind that on all of these bathroom instances, there is pain, and blood of varying amounts.

Does that give you an idea of how things are? I can’t go into the intricacies of the whole day, really – but I would always have at least one possible stop off on the way to work, I would always allow a lot of extra time to get there, just in case I had a really bad attack. I would generally go to the bathroom two to three times an hour in the first half of the day, lessening as the day went along. That was the reality.

And it’s the reality for a lot of other people too. We all have different precise symptoms, but pain is universal.

I was only diagnosed at the end of 2010, but even though it’s only been three and half years, I still couldn’t possibly tell you how many times I’ve had needles put in me. I’d hazard a guess at fifty blood tests, maybe fifteen IVs (and that’s not including all the times that I’ve been stuck more than once because my veins are so worn out). I have had IV infusions that almost much amount to chemotherapy (hardcore drugs given intravenously), I’ve been on drug trials (multiple injections in my stomach, every week, about seven vials of blood taken every week), I’ve been on steroids, I’ve been on the sort of drugs they give to organ transplant patients.

As canny readers will realise, none of this has properly worked. I had fifteen centimetres of my colon taken out last year (I have the laparoscopic scars to prove it – I’ll show you if you ask – my belly button looked super brutal for the first few weeks after the op). I have an ostomy, for now (cf. my happy clappy articles for various publications on the topic). These meds and surgery probably saved my life. People can – and do – die from complications of IBD. The internet IBD community has recently been mourning the death of twenty year old Alexandria Davidson, a Crohn’s advocate who spent the last months of her life in hospice care. I had only vaguely heard of her and her organisation before I heard about her passing, but it still upset me. IBD is not something to be trifled with – and to suggest that it’s a stomach ache that’ll go away if we eat raw vegan/paleo/gluten-free/insert fad here is deeply insulting both to those of us suffering from it, but also to those who have died as a consequence, and to their families.

I am still not well. I take painkillers most days, I take anti-nausea meds more often than I’d like. I get joint pain – my knees are below par, and sometimes my elbows,  fingers, and toes play up too. Now that I’m ‘healthier’ than I was, I would like to be able to get more active, but instead my body seems to be letting me down when I push myself. I still get intestinal pain – and after my specialists agreed, post-surgery, that it was most likely Crohn’s, not ulcerative colitis as previously though, I am living in constant fear of inflammation and pain spreading to other parts of my gastric tract, instead of limited themselves to my large intestine like well behaved UC symptoms should. I am going to need to have at least one more operation at some point in the future – and even that is scary. You never know exactly what will happen, what will have been done when you eventually wake up. You have to deal with a whole new kind of pain during recovery.

There is a lot to handle. Especially when you’re in a new city, still waiting to be seen by their gastroenterology unit, when you don’t have people around who understand what you’ve been through, when you no longer have someone to sit with you when you choke down colonoscopy prep, to rub your back when you’re in bed crying from the pain.

So, today, spare a thought for me, for your cousin who has Crohn’s, for your coworker who has taken time of for mysterious stomach pains. Think about the reality of what we live with, a life of pokes, prods and pain, a life of boxes of medical supplies at your door just to be able to function in society. It’s a mixed feeling when you get excited about the arrival of a new style of bag. If nothing else, just remember – it’s a hell of a lot more than a tummy ache.

the teenage dream?

Eventually, in this article/mess, I will talk about Zac & Mia by A.J. Betts. But you have been warned, it seems that it took me a LONG time to get there. Ah well. Enjoy my brand of literary ranting and raving.

In early 2010, I went to Wellington for an Amanda Palmer concert. As was tradition.* Part of my excuse for trekking down country for a musician I had seen more than a couple of times was a) I had a free ticket and b) Neil Gaiman was also in town, hurrah! I had finally actually read some Gaiman by this point, having shamefully not actually touched any of his work when I met him eight-ish months earlier.**

So I dutifully purchased a ticket to the ‘An Evening With…’ type event that was going on at the Town Hall the day after the Amanda show (if memory serves), but I still had time to burn before the gig, and discovered that Neil was doing a session with Australian author Margo Lanagan on YA fiction, chaired by Kate de Goldi. What’s not to like? I bought a ticket, and headed to The Embassy***. And it was thoroughly illuminating.****

There was a sense of agreement among the authors that kids are really good at self-censoring – that’s to say, even when reading things above their intended age, oftentimes the things that are ‘inappropriate’ will just go over their heads. I thoroughly agree with this – I can’t come up with an book-related examples off-hand, but when I look back at all the dirty jokes and suggestive lyrics in films and songs that I watched and listened to without a care in the world as a kid, it does make me think that there’s something to it.

Related to this, both authors seemed to say that despite writing for a range of ages, they don’t go into a story thinking ‘this is something that I’m writing for teenagers’  – rather it is something that is the product of publisher and editorial decisions made on something that has grown of its own accord, without working to fill some sort of age-genre niche. It makes me wonder how things would work if other authors worked in a similar system, how it would (or wouldn’t) affect the way that trends work.

Because that’s what this is basically meant to be about, before that introductory tangent happened. Young adult genre trends, and how strange they are. Really. It really does open your eyes as to just how swayed by current interests the teenage/young person mindset is when you see just how overwhelmingly trend-driven YA fiction is. There are obviously ebbs and flows in terms of what is most popular in the world of regular adult fiction, with occasional strange outliers like Fifty Shades of Grey, but as a whole, people can have specific interests in any genre, and there’s going to be new stuff being churned out on a regular basis, be it thriller, sci-fi, ‘literary fiction’ (borrowing Ellie Catton’s quote marks there), or what-have-you.

But teenagers! My goodness. At this moment, it’s perhaps not so mad as it has been at some points in recent years – it seems to be a bit of a transitional period at present – but having worked in a kids’ department in the height of Meyer-mania, the proliferation of vampire (and later Insert-Paranormal-Creature-of-the-Month – did anyone else read Switched by Amanda Hocking? Or as my former workmate Rosie and I referred to it “that troll book”?) fiction was INSANE. I mean, everyone knows that. If it’s not Twilight, it’s Vampire Academy or Vampire Diaries, or Blue Bloods, or The Mortal Instruments. Money spinners, every one – and I won’t claim to judge them for quality, because I haven’t read most of them. I did read all four Twilight books (and the companion novella The Short Second Life of Bree Tanner) and the first book of The Mortal Instruments, but, in case you’re interested, here are my excuses/reasons.
1. Twilight – I found an abandoned copy at O’Hare Airport on my way to Montreal. Made for good plane reading.
2. New Moon – I forgot to bring a book with my on the plane to Florida, and it was the cheapest English language book in the Montreal airport bookstore.3. Eclipse – I had confessed that I’d read them to a friend, and when she came to visit me she brought a copy of Eclipse with her that she’d found while cleaning out a flat or some such.
4. Breaking Dawn – By this stage, I have to admit, I did actively borrow it from a friend (thanks, Mel!), just so that I could say I’d seen it through to the end.
5. The Short Second Life Of Bree Tanner – Off-site sale store, just myself and much less-than-riveting stock for company. So over the course of a few shifts I stealthily worked by way through the book (as well as a re-read of The Bad Beginning. Miss you, Botany Town Centre (not).
6. City of Bones. I don’t know if Cassandra Clare is quite in the same ‘really?!’ league as Stephenie Meyer, but still. I read this because it was on my Kobo when I was in hospital after my op last year, and it managed to make more sense than Atwood or Asimov in my morphine haze.

I’m just all about the tangents today, aren’t I? It has been a long day.

Anyway. We were talking about trends! So, as most people will be aware, the next major Young Adult Fiction Trend after paranormal romance was/is Dystopia. Which is very much more up my alley. You all of know my Atwood obsession – and more specifically my Atwood speculative fiction obsession. A good dystopia is just brilliant, and I can’t quite put my finger on why. The cautionary tale element, perhaps, or maybe I just have no faith in the future of the human race? Depends on the day. Regardless, The Handmaid’s Tale and the Maddaddam trilogy are some of my favourite books of all time. And suddenly, there were going to be new dystopic books written in such a way as to be consumed swiftly and easily. Frabjous day!

The Hunger Games was excellent, to a point. I’m not unique in my opinion that the second two books suffered because of the assumed timing/publisher pressure following the huge popularity of the first. Divergent had a similar fate, as did the Uglies books (though neither were quite on the same level as The Hunger Games) – great first book to hook you, but everything rather gets a little too big too fast, and the writing quality drops as a consequence. I tend to think that the ideas are better than the execution in some of these YA dystopias, which isn’t the end of the world, I suppose – I’m sure it fuels the imagination of fledgling writers finding their feet through fanfic.

But even the day of Dystopic Dominance seems to be drawing to an end, and John Green is perhaps the main man behind this transition. Real life is cool again – and in particular, the brand of ‘sick lit’ as it is sometimes uncomfortably known, that he seems to have kicked off with The Fault in Our Stars (correct me if I’m wrong – and obviously I know that books in this vein have existed forever, but none have had quite the same following). I really loved the book, when I read it last year while in the throes of being desperately unwell. One of his other books was one of my other post-op reads (Paper Towns, I think?) along with the aforementioned Cassandra Clare title. Now, kids with cancer are having their stories shared more passionately than ever. I just finished reading Zac & Mia by A.J. Betts, and I thoroughly enjoyed it – but at the same time, it felt a little like I was reading the Aussie version of TFiOS, with less pretentious protagonists and a shuffle of specific cancer-locations. Love on the oncology ward, the new Love in Post-Apocalyptic Appalachia, or Love & Fangs in the Pacific Northwest.

It seems like such a strange niche to have such prominence. Is it the sparkly strands of hope beyond all odds? Is it the fact that many a child will have seen a classmate or relative suffer through the pain of cancer (or another serious illness, though these genre books don’t seem to have stepped out of that box yet)? I’m not a cancer patient, obviously, but my health background meant that there were a fair few moments while reading Zac & Mia that I felt uncomfortable with how familiar these things sounded – the bruises and scars on arms from needles, that constant whir/drip of IVs, the way in which such intensive drugs just sap your life force entirely. I’ve sat in haemotology, with my IV attached, surrounded by patients undergoing chemo. I’ve been put under, not knowing exactly what’s going to happen when I wake up, I’ve had a puffy steroid face, I’ve had slight fond reminisces of a catheter.

Basically, I can relate to some of the goings on of these characters more than I’d like to. I suppose it’s not helped by the fact that I’m currently in a bit of a flap about my health going forward, but I felt constantly on edge while reading hospital scenes in Zac & Mia, even as I felt compelled to read on, felt compassion, empathy. What does a healthy reader take from these stories? Do they zone in on the love stories, with the cancer simply part of the love story? Do they read on, knowing that one of the bright young things could relapse and deteriorate at any moment, so that they the reader can then cry along with the protagonist left alive? Is it glamourising illness, despite painting a pretty damn unhappy and unpleasant image of it?

I don’t know. I’m probably overthinking it.

Trends are strange things, guys.

Perhaps there will be a part two tomorrow when I’ve had more time to digest the book, and I’m less exhausted (funny, right? because when am I ever not exhausted?). All this being said, I would still recommend it.

*The tradition being that I had a compulsion to travel far and wide in pursuit of as many AFP concerts as possible. Last tally was fifteen, I think, including one Coachella slot, one Dresden Dolls show, one performance/reading with her and Neil at a bookstore and one performance of “Delilah” in her lounge. But I digress.

** This was the time that AFP and Neil were performing together at the Housingworks Bookstore, when I came in early with the gang, as it was in those NY-y days, and I was sitting pretty in a corner keeping out of the way when Neil walked past, then stopped and came towards me, saying “You must be the other barely legal lesbian (cf. @thebarelylegals, an on-going Twitter joke circa May 2009), from New Zealand! I’m Neil.” And he stuck his hand out to shake, and apologised for having forgotten my actual name. He had met Kayla, the other part of the boisterous Bed-Stuy  duo the day before, hence the ‘otherness’. It was possibly the most surreal moment of my life. Gods bless my bright pink hair.

***Where, in hindsight, I probably interacted with some of my now-colleagues at the Unity satellite store.

****Keep in mind that everything is being jotted down by memory, now, and this was four years ago, and those four years have been full of illness and drugs and surgery and depression and many other things which may have slightly tinkered with my memory.

held

i meant to find some comfort in the keyboard, finding myself awake later than i should
borderline hyperventilation, reliving moments best left to the past, ill-chosen reminders
for every word of reassurance, this too shall pass, you are so strong
once in a while the breakdown, the relinquishing of control to that baser part
known for its lingering, its fears, its dread – it descends and the wind outside will not dislodge it
the rise and fall, lost in the trough where bad dreams feed and breed
the but, the every but that comes to mind
so easily shot down, words are wind, since this is some strange fantasy after all
alms given in casual words
he told me i lacked empathy, smug and meditative
i told him empathy is why i’m still here

sometimes my illness makes me feel strong
sometimes i tell myself that it is what has led me to this place
that it is no bad thing to have your path drawn in strange ways
better sense tells me that it was not health that drove me this way
in goals and in dreams
but it is what i owe my unhappiness to
directly, indirectly, every day, looking at scars
a constant thrum of malcontent
no end in sight, just a lifetime of people telling me
how strong, how brave, how inspirational
and waiting for the next drug or op
i do not want sympathy
i just want to be better
i want to have energy so that i may be able to live
i want to not live in fear, or less of it at least
i want to not have to use this page
as a diary or a one-sided counsel
i just want to be better.

the official countdown begins

Here are some numbers – I’m 23 years old. I’ve been diagnosed with ulcerative colitis for a smidge over two and a half years. I’ve had IBD-type symptoms for 4-5 years. And in 18 days, I’ll be getting a partial colectomy.

Yes folks, I’m booked for surgery. September 11th, of all days. I will be heading out to the Manukau Surgery Centre, and I’ll be there for at least 3-4 days. Approximately a third of my large bowel will be removed – though they won’t know for sure until they’re going in, of course – my last scope was in June, so it’s possibly that things are looking slightly different, but no matter what, that left side is on its way out.

I’ll wake up with a temporary ostomy, in all likelihood – there’s a lot more risk of things not healing up properly if everything is reconnected straight away. I’ve therefore been eyeing up various sassy wraps and high waisted underwear (some of the ones that Awestomy have are particularly boss, and I’d kind of like a pair regardless of whether or not I had a bag to keep safe!) – but I don’t want to commit in case my stoma winds up being particularly low or high, meaning certain garments would be more or less appropriate, depending.

I’ll also be off work for about a month. If I’d been heading for a total colectomy, it would have been more like six weeks, but a month is what I’ve been advised for this partial colectomy – thank jebus, because I’ve got approximately 18 days of holiday pay accrued (and a day and half of sick leave left), so I should just make it through without having to worry about arranging a temporary sickness benefit, which would only just cover my rent and weekly household expenses, plus $5, so that’s not exactly ideal).

I’d be lying if I said I wasn’t nervous – now that I have an actual set-in-stone date (and it’s only two and a half weeks away!), it’s all even more real. I’ve had the initial consultation (which I’ve probably mentioned already), I’ve had the preemptive MRI (to check in on my small intestine – jury’s still out on that one, to the best of my knowledge, so I’m still hovering in the ‘could-it-maybe-be-Crohn’s?’ camp), and next I have the actual final pre-surgery appointment on the sixth. And the the big show the next week. I know there are risks involved, obviously. That’s the scary part. But most of all, I am excited that there is finally progress being made. Something is getting done. It’s not the final solution – there’s another operation or two before we even think about being at that point, but it’s something – and the idea that I could wake up with most of my pain and problems gone… that’s pretty fabulous.

I’ll definitely be keeping y’all posted as things progress.

Eeek.

Love and guts,

Briar

We interrupt your regular writing programme for an IBD-flavoured update!

Ew. I don’t even want to think about what something IBD-flavoured would taste like. 

Yeah, let’s not go there.

Instead, let’s go onwards from shitty titles (HA!) and examine the matter at hand. It’s been a while since I made a health related post, so here’s an update. Maybe this radio silence led you to believe that all was well in the Raw Library intestinal tract? Sort of. Not really. I wish.

See, as I’ve mentioned before, I’m on an uber-cocktail of meds for my merciless colon’s deathwish. No prednisone anymore, thank god, and I don’t think I can handle that jandal again any time soon. As much as being super sick with colitis symptoms SUCKS, at least I understand exactly what’s going on, and the only mental involvement is frustration and pain synapses firing. On pred, sometimes you don’t know which freaking way is up. 20mg, and my brain loses its ability to think rationally. Meltdowns, as mentioned here. The weight piles on, the face blows up – I’ve only just gotten to the point where I think I’ve lost the moonface swelling. But no prednisone doesn’t mean anything else has eased off, oh no… I’m still popping the mesalazine and azathioprine like a champ, and going in like a good little sick girl to get my infusions every eight weeks. And I’m still not better.

At this point in time, I’m kind of already scraping the bottom of the barrel. I know that I’m not being quite as careful with my eating as I could be, in terms of avoiding trigger foods, but at the same time, on days when I do avoid the naughty things, and when I manage to soldier on without coffee, I still have aches. I still don’t feel right. I hate hate hate it.

At this point, my bathroom trips are still probably already greater in number than they would likely be if I had a j-pouch. So it’s hard to find a reason why I shouldn’t just tell me GI team that I want out, when I’m all out of meds that I can try (I know some UC patients have success with Humira, but it’s not available for colitis patients in NZ, only CD/RA/AS ones). If they said to me tomorrow, ‘Briar, we can book you in for surgery, what say you?’… I think I’d say yes. It’s more than a year since I started coming to terms with the fact that it was a real possibility. 

So that’s where I’m at. I’ll be back with more details in a few weeks, once I’ve had my next infusion and next GI appointment. Who knows where I’ll be at then…

constant vigilance

I had a moment of terror last night – woken up at 2:30 by my insides, for the first time in a while. Pain, not the worst I’ve ever had, certainly, but decidedly unpleasant painNaturally, I went to the bathroom. Spent 20 minutes alternating between almost-acceptable and agony, and I’m not quite sure whether the tears were from the pain, or the frustration, or a combination. My money’s on the latter.

But with tramadol, the pain subsided. I managed to sleep, fitfully, mind you, but some sleep was had. There was no blood – both good and bad, I suppose, because blood at least is an indicator that something is definitely not right. But this was just pain, urgency and whatnot. So I’m not sure what’s up with my insides right now, but come actual daytime morning, I was okay. Back to my current fairly remission-y self. But I’m worried it could happen again, and realistically, there’s nothing I can do to avoid it nor know if it’s coming on. All I can do is keep an eye on what’s happening, see if there are any tip-off factors for moments like this.

On Tuesday, I’ll be taking my prednisone dose down again. I’m more nervous than excited.  If I stay ‘okay’, then that’s great. But if symptoms start recurring… worrying that steroids are the only thing that give me some kind of relief from the grim reality of severe colitis… that’s not such a pleasant thought. So for now, I will enter into this next phase with some trepidation, and we’ll just have to see what happens. Since I’ve had these past few ‘good’ weeks, I’ve obviously spent less time dwelling on the possibility of surgery and all that jazz. But I’m forcing myself to be realistic again, because when it comes to chronic illnesses, few things last forever.

But in the meantime, while I am doing pretty well, I’d better get back on top of Sunday’s necessary chores. Tidying and baking (necessary? yes!) and writing. O, the one day weekend…