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.

Elsewhere: Writehanded Girl

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.

my face

You’re welcome.

The end.

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.