Wandering Thoughts

November 1, 2015

Flattened

Filed under: Aortic Valves,Reactive Arthritis — terence @ 2:17 pm
Tags: , ,

The seizure meant more medicine. Both to reduce the risk of another one, and to try and eliminate the spells of confusion I’ve been having ever since surgery. That one fully fledged seizure had the neurologists more inclined, even if still uncertain, to classify the episodes of confusion as a type of epilepsy.

And so I started adding anti-epileptics on top of Warfarin, Losartan, and Humira. First came Sodium Valproate, smooth purple pills in soft plastic foil packaging. I was so worried about the side effects—hallucinations, depression, strange behaviour—that, because Jo was travelling, I asked a colleague to call Jo if I seemed weird, and asked a friend to check in on me.

There were no side effects. Nothing. And that was the problem with Sodium Valproate. I didn’t have any more tonic-clonic seizures, but I’d only ever had one in the eight years since surgery, so they weren’t frequent events. And the spells of confusion, which were the best yardstick of treatment efficacy, kept trundling through my life as they always had.

And so I added Kepra, starting on a low dose and slowly increasing it. Kepra did something, perhaps: about the time I got to a therapeutic dose I went six weeks without any spells of confusion. This was at least twice as long as I’d ever gone before. Jo and I started to hope intensely. I would be able to drive again. Jo wouldn’t have to accompany me every surf. Life would be normal in its unusual kind of way. But then the spells came back.

So I kept upping the dose of Kepra, but with this came a mild lethargy, and although the spells were less frequent they were still quite frequent.

Next I started Tegretol, increasing the dose while I weaned myself off Sodium Valproate. And now I’m on the full dose, with the useless Sodium Valproate no longer in my pill box. As I type this I’ve been about three weeks (and carefully counting) without any confused spells. This is long enough for the medicine to be promising me, but not yet making any guarantees—I’ve been three weeks often enough before. And I now know that even six weeks doesn’t necessarily mean problem solved.

Tegretol hasn’t been easy either. It impedes the absorption of Warfarin, so I’m on an ever increasing dose of Warfarin, wondering if my liver can cope (although there’s no medical reason to think it can’t). Worse, Tegretol is flattening me, in a slightly sad sort of way. It makes it hard to find the energy. It makes chores feel like a chore. It makes it harder to believe in things in the way you need to believe. This isn’t insufferable, or impenetrable: after surfing I still glow; and happy conversations still bounce along. Reading still works, more or less. And if I try I can push back against the effect.

So, here I am, mostly hoping the Tegretol works, but part of me hoping it doesn’t. Because if it doesn’t I will wean myself off it as-fast-as-I-can.

Disclaimer 1: I realise things could be worse.

Disclaimer 2: My medical situation is my medical situation. Yours will be different. Make your choices on the basis of what medical professionals tell you, not what you read here.

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August 17, 2014

Seizure

I turned up just after 2am. I found my self sitting on a bed. Sitting on our bed. Someone – Jo – was standing next to me. There was a woman at the end of the hall dressed in blue and white. I’d never seen her before but there wasn’t enough of me there yet for this to be unusual. For it to be anything.

Jo was speaking to me.

Do you know what’s happening?

No.

My neck was aching. One of the joints in my back hurt too.

You’ve had a seizure.

I was with it enough now to think first – driving – and then: shit, we were going surfing this weekend.

There were two women at the end of the corridor now.

They’re from the ambulance. They’re going to take you to hospital. I’ll drive our car.

How long did the seizure last?

You were convulsing for about two minutes. That was 15 minutes ago. I need to get you dressed.

I’d wet myself.

I was walked out to the ambulance, and then lay there as they put a needle into my arm and hooked me up to something. One of the nurses had worked in Solomon Islands; Jo was talking to her about that. Then we were driving.

I don’t recall much of the drive. Being wheeled into hospital was odd and upside down, but from then I found my way to a normal quite quickly.

I lay in a bed in A & E. Jo sat with me. And I felt sore ­­– my joints must have crunched convulsing – and sort of sick. Although once I was allowed to eat I felt less ill.

And that was me discovering I had epilepsy. A month ago now.

Ever since open heart surgery I have had spells of something akin to confusion. Deja vu, and a rush of memories of things which never happened.

Several years ago in Canberra I went and saw a neurologist: a chubby puffed-up man who thought way too much of himself, who told me I was suffering nothing more than anxiety.

I’ve suffered anxiety, and these spells were nothing like it. But while they weren’t pleasant, I couldn’t see the point of doing anything else after the dead end of that medical ‘professional’.

And so I went on, hoping I wouldn’t have an episode while giving a seminar, and not enjoying the spells when they occurred, but usually they were gone within 15 minutes. And I could live with that.

Then finally I had the tonic clonic seizure. And here I am now, struggling with not being able to drive. And wondering whether I can safely surf. And worrying about side effects of sodium valproate, and whether it will interact with warfarin. But at the same time better for having a proper diagnosis.

Some lessons:

As philosopher Havi Carel wrote, when you are ill, how you are treated makes a big difference. I’m very lucky to have the support of my wife and family. It would be very hard to navigate all this on my own. Also, two weeks ago I had my first neurology appointment at one of Canberra’s public hospitals. The appointment lasted over an hour. The registrar was incredibly thorough, and the consultant was considered and decent. And they went out of their way to explain, and to answer our questions. Which helped a lot. According to the consultant, the seizures probably stem from something akin to a small stroke, which I must have had shortly after open heart surgery.

Some advice:

If you end up with a serious chronic illness, address the illness itself as best you can, but also prepare for, and manage, non-biological changes to your life. There’s a lot more to it than your physical symptoms. Your relationships may change. Your career may be harder to maintain. Your goals may have to shift. You can’t cure any of this as such, but being aware and managing it helps. And hopefully you, like me, will find plenty of space to be happy, even if it’s a struggle at times.

And don’t worry (although always get symptoms checked by a medical professional): seizures in the wake of open heart surgery appear to be rare, and heart problems as a consequence of Reactive Arthritis or Ankylosing Spondylitis are not common.

And then:

Sometime around dawn they discharged me from A & E, and Jo and I decided to take the weekend we already had planned. We watched Brazil beat Chile in the soccer, then drove to Braidwood where we had coffee and food, and then made our way down to the coast, where we lay and read on the beach, under the winter sun, watching the sparkling sea.

April 30, 2014

The first evening’s Yoga class…

Filed under: Going Places,Reactive Arthritis,Staying Places — terence @ 11:26 pm

Years ago you fell out. Painfully.

You’ve hardly spoken since. Determined silence. Occasional incivility.

Then one day you had to spend time together. Socially. It was awkward at first. Then uncertain. It never actually became comfortable. And who knows how it will work out. But it was promising — your body and you.

April 21, 2014

Got your back

Filed under: Reactive Arthritis — terence @ 11:05 am

A very useful post by aid data guru David Roodman on how to take care of your back.

For what it’s worth – as I’m desperately trying to keep enough mobility in my arthritic body – to stay a surfer (I actually had mild chronic back problems pre arthritis too) find that:

1. McKenzie rolls help.

2. A standing desk is great; although I can stand for half a working day at the absolute most.

3. Walking helps a lot.

4. Stretching is a big help too; just don’t push things too far.

At least, this seems to be working for me — and surfing is currently leading to less pain.

August 8, 2013

Happy feet

Filed under: Going Places,Reactive Arthritis — terence @ 3:05 pm
Tags:

Anti-arthritis medication and our brave little car took Jo and I along gravel roads, above the tree line, and hiking in the gale swept, snow-dusted Brindabella Ranges

November 7, 2012

Four More Years

Filed under: Reactive Arthritis — terence @ 10:08 pm

This time, four years ago today, as I listened to analysis of the US election I was feeling deeply troubled.

Troubled, not by the election, but by aches in my knees and back that had been progressively getting worse all day. This, I worried, felt like a relapse.

It was. The next morning (my wife being away for work) I had to ring my parents and ask them to come and help me. I couldn’t dress myself. Within 24 hours I went from: have survived open heart surgery; arthritis in remission; looking forwards. To: can’t move; worrying about damage to my heart; wondering if I can work enough to keep my job.

That relapse eventually quietened somewhat, but has never fully gone. And over the last few months – temporary steroid induced respite not withstanding – things have slowly got worse again. Not nearly as bad as they were the day after the election in 2008 but bad enough to make things difficult.

I think the main point of this post is simply to say that it doesn’t feel like four years has passed. Or, on the other hand, maybe it does: I feel tired enough.

More cheerily, under low grey skies I snuck away from my computer this morning and found myself a quiet little river bar, with glassy waist high waves rolling down it. I kneeboarded a few and pulled myself slowly to my feet on a few. And boy did that leave me feeling happy.

I’m pretty happy about the election results too, of course.

 

September 24, 2012

The other thing that makes chronic illness hard…

Filed under: Reactive Arthritis — terence @ 12:24 pm

…it is very hard to trust research on the efficacy and side effects of medication. This situation is insane, and technically could be cured, but thanks to the chronic problems of political economy it probably won’t be. Depressing. All the more so when you’re trying to figure out what to take.

September 22, 2012

Hurting

Filed under: Reactive Arthritis — terence @ 10:43 am

Possibly my jandals were the culprit. Maybe I wore them too much, and they were too hard on my feet. Or perhaps inflammation returned because of my poor diet. Or perhaps the cause was exhaustion in those last few, too-busy, weeks in Honiara. Or maybe my arthritis just came back because that’s what it does.

Really, this time it had barely gone away. After the major relapse in 2008 it got better in 2009, was quite good in 2010, and then got a bit worse in 2011. Since 2008 I’ve never been well enough to surf properly, and sleep’s been hard. But I have been able to walk a fair bit, and day to day life had been ok.

But in June sometime the underside of my right foot started to hurt. Usually when I have a relapse it happens overnight, but this was slow, up and down, but with downs outweighing the ups. By the time I got to Wellington in the end of June I was too sore to surf. And a few weeks later struggling to walk. My hip, shoulder and back have joined in now. My back gets me when I sit. My hip when I lie. And my foot when I walk. And with the pain comes fatigue and inertia. And I’m worrying about my heart. I’m worn out. And sick of being sick.

I’m lucky too: helped by my wife and parents, and money. And being a PhD student is easier than if I were someone who made a living from physical labour. Lucky and tired.

For complicated reasons I can’t take methotrexate right now. But I need to get my inflammation under control (along with anything else I can’t risk any more damage to my heart). I probably won’t be able to get on TNF inhibitors unless I’ve been taking methotrexate (and I don’t know if you can travel when taking these anyhow). So my plan is a few months on steroids. Which don’t work that well but will help. The trouble is, it looks like I now have to wait, several months possibly, until I can see a rheumatologist to get steroids prescribed.

If I’ve learnt anything from all this it’s simply that actual illness is only a small part of being ill. The real story is you, and the intersection between you, disease, uncertainty, your friends and family, the country you live in, what you hope to do, and what you’ re happy doing without.

July 16, 2011

Ouch!

Filed under: Reactive Arthritis — terence @ 7:32 am

An interesting article in the Economist about alternative therapies and the placebo effect.

Giving pretend painkillers, for instance, can reduce the amount of pain a patient experiences. A study carried out in 2002 suggested that fake surgery for arthritis in the knee provides similar benefits to the real thing.

and

Despite the power of placebos, many conventional doctors are leery of prescribing them. They worry that to do so is to deceive their patients. Yet perhaps the most fascinating results in placebo research—most recently examined by Ted Kaptchuk and his colleagues at Harvard Medical School, in the context of irritable-bowel syndrome—is that the effect may persist even if patients are told that they are getting placebo treatments.

! – although I wonder if the weren’t just capturing some form of regression to the mean here?

August 29, 2010

Aches and Pain

Filed under: Reactive Arthritis — terence @ 10:56 am
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Thanks to Carina who sent me the link, an interesting article in Salon about pain.

It’s the pain tired nexus that gets me. Pain makes me tired. Being tired causes me pain.

The pain makes me tired bit makes sense: in particular my shoulder and lower back often wake me sometime around 3 or 4 am. Also, being sore has a fatigue of it’s own. It takes an effort. And so it leaves me tired even when I sleep well.

The other link in the chain is something slightly stranger. If I don’t get enough sleep, I end up sorer. Or, more accurately, if I have a late night, I don’t necessarily hurt more, but if I wake early in the morning I do. I haven’t the faintest idea why this might be but fitting into the cycle as it does, it’s a real pain.

April 25, 2010

The Arthritis Diary (updated)

Filed under: Aortic Valves,Reactive Arthritis — terence @ 1:01 pm
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Feb 1999 – Catch dysentery in the Cape Verde Islands. Unpleasant but, as these things go, mild enough. So mild that I wait until I’m back in Portugal to see a doctor.

March 1999 – See a doctor in Figeira da Faz but, seeing as my stomach now seems settle, don’t both taking the antibiotics he prescribes.

March/April 1999 – Now back in London and my body starts doing very strange things. The baseball size knees being the most quantitatively disturbing. See a number of doctors before diagnosed correctly with Reactive Arthritis (ReA), but then receive excellent care. Have a frightening run in with what I think is Iritis but what the ophthalmologists decide is cold sore virus in my eyes. Iritis can damage your sight and my symptoms were textbook. It’s also a common complication of  ReA. Over this time the most inflamed joints are my knees and parts of my spine.

April 1999 – December 1999 – Taking nothing more than Ibuprofen (and a short course of antibiotics to clear the initial dysenteric infection; along with a couple of knee drains and steroid injections early on in the piece which only provide short term assistance) I slowly but surely get better. I notice that the rate of improvement increases as I reduce the Ibuprofen dose.

December 1999 – early 2002 – Effectively in remission, with only the mildest of symptoms. Able to travel to Greenland, trek in Patagonia and surf my socks off.

Early 2002 – a quick, two or three day, and relatively mild flare-up. Gone as quick as it came.

Mid 2002 – start to get more arthritic during the busy final month or so of my work. I’m also partying quite a lot and dealing with insomnia. No new infections though. The return, as is often the case with ReA is spontaneous – maybe triggered by lifestyle/fatigue. Worst joints – lower spine and knees.

Mid 2002 – Away for a week’s surf trip up the NSW north coast arthritis abates quickly but then returns upon return to Sydney and back to work.

Mid 2002 – I quit my job and go backpacking round Australia. At first the arthritis seems to be improving but then a long tramp around Mungo National park brings it back with a bang. Rightly or wrongly, and increasing pain, I continue my planned travels around Australia. Worst Joints – lower spine and feet. Knees now more or less fine.

Late 2002 – return to New Zealand. See a Rheumatologist at Hutt Hospital who proscribes Methotrexate. Frightened by he potential side effects of the drug, deterred by the lack of consultation around this decision, and not keen to admit my condition might be chronic, I don’t take the methotrexate. Instead I seek out another Rheumatologist who prescribes minocyline.

Early 2003 – Shortly after starting the minocycline begin a steady improvement. And start surfing again.

Early 2003 – Probably surfing too much in fact. I notice after long surfs the arthritis gets worse for a few days. Keep surfing though until…

About June 2003 – Relapse in the space of about an hour one evening. Literally I sit down to watch TV and then struggle shortly afterwards to get back up again. The arthritis had never fully gone away but now it was severe enough to stop me from surfing again and make life generally pretty difficult. Worst joints: feet and lower back.

June 2003 – September 2003 Rheumatologist adds clarithromycine (sorry I’m spelling the med names wrong) into the mix. Once again start getting better. Am surfing again by November.

December 2003 – Another relapse, this time overnight. Sometime around now try adding Cipro into the antibiotic mix -doesn’t help. Worst joints: back and feet. Particularly my plant-fasha (sorry also spelt wrong) muscle in the base of my right(?) foot. Spend time on crutches.

October 2004 (I think) – Start Sulphasalazine. Well enough to surf within a couple of months although definitely not rid of symptoms. I have to surf wearing a shoe to ease the pain in the base of my feet.

June or July 2005 – Another relapse – this time maybe actually the result of ear infections caught surfing. The worst relapse to date. Back on crutches, taking prednisone and close to being immobilised.

July 2005 – March 2006 – Some improvement but it is very slow. Definitely not well enough to surf. Struggle to hold down a 3 day a week job.

March 2006 – visit doctor and naturopath in Melbourne. They tell me to cut all grains but rice from my diet and also to eliminate dairy too. Prescribe different antibiotics.

October 2006 – I surf again. I can still remember how happy it felt to stand on that first wave at Titahi Bay. The naturopath and doctor’s advice/prescriptions seem to have worked. Certainly from March to October got much more quickly better than I had been.

October/November 2006 – Notice that I am very easily puffed surfing (and doing other exercise). Figure that I am just unfit.

December 2006 – surfing a lot.

December 2006 – November 2007 – Arthritis very close to being in remission. Am well enough to surf and hike (my feet are absolutely rid of inflammation – which is amazing). This period of remission is longer and stronger than all those preceding it other than the 1999-2002 remission. The only evidence of continuing disease is that if I surf too much I’m sore and inflamed for several days afterwards.

November 2007 – the doctor in Melbourne notices a funny pulse on my neck, sticks a stethoscope on me and informs me I have aortic regurgitation. Arthritis still fine. I’m worried about this and, on return to Wellington, hop in the queue to see the cardiologist at the local hospital, but I’m not that worried. My symptoms seem so mild (just a bit of breathlessness).

February 2008 (I think) – see cardiologist who informs me I’ll need open heart surgery to replace my aortic valve and ascending aorta.

May 2008 – cardiologist tells me I need to stop surfing. And that I must go easy on my heart. Arthritis still fine.

August 2008 – have surgery. Make a pretty good recovery. Worst lingering side-effects being to do with my memory.

November 2008 – Bang. Overnight. From being just a little stiff one day to unable to dress myself. Arthritis is back and I’m broken. No new infection.. No obvious cause. Maybe frustrations and stress at work plus a delayed response to the shock of surgery? Worst joints back as always; right knee; left hip; right ankle. The worst my arthritis has ever been.

November 2008 – May(ish) 2009 thanks first to Ibuprofen, panadol and tramadol, and then prednisone I manage to keep working somehow. Not a fund period of time. I try a large infusion of methlyprednisolone (spelt wrong of course). Helps but only for a few days.

May 2009 – finally take the plunge with Methotrexate. Something I should have done months earlier. It helps almost straight away and, in the absence of significant side-effects Rheumatologist increases dose to 25mg/week.

August 2009 – I surf again but it’s not like previous returns to the water. I’m very, very fragile. And the improvement doesn’t continue.

August 2009 – December 2009 I’m just well enough to surf and that’s about as good as I get, with fluctuations as described in this blog.

December 2009 – doctor/naturopath team in Melbourne (who I’ve still been seeing but who haven’t been able to repeat the magic of 2007) advise me that I’m actually a lot better and can try reducing my methotrexate dose. This seems like very bad advice but, out of interest, and because 25 mg a week is starting to knock me around a bit I reduce my does to 20mg (with the consent of my Rheumatologist in Wellington). To my surprise I seem to get a little bit better.

Feb 2009 – Quit my job. Flat tack busy preparing for shift to Australia. Manage to longboard (surf) quite a bit. I’m still very fragile but doing better than on previous efforts. Maybe only because I’m riding easier boards though.

March 2010 – To Australia. Maybe a little better here. Have tried lowering Methotrexate to 15mg per week. So far I haven’t gotten any worse for it. Will see what happens over next month and a bit. If still no worse will try lowering again and if this doesn’t cause problems will return to people in Melbourne for another try. Suffering from vertigo a bit and still struggling with post-surgery memory issues. On the other hand: enjoying longboarding down the South Coast.

January 27, 2010

Rays

Filed under: Reactive Arthritis — terence @ 5:45 am
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I got my x-ray results yesterday. The bad news is that my hips are damaged. Mechanically damaged as opposed to just inflamed (although the damage is a product of the inflammation). So I guess I get to keep my limp. Though how bad it would be if I ever got the inflammation under control I don’t know. Nor do I know what it means really. The end of any chance of being able to walk long distances again? A problem for surfing? A replacement down the track? Or maybe just an inconvenience should I rid myself of the underlying problem.

The good news on the other hand, is that my spine doesn’t seem to be fusing together at any significant rate yet. This – for all the reasons which spring to mind when you hear the words: spine, fusing, together – is something to celebrate.

January 25, 2010

Vertigo

Filed under: Aortic Valves,Reactive Arthritis — terence @ 8:05 pm
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Sometime petty early Sunday morning I rolled over in bed. And I kept rolling: welcome back vertigo.

I’ve had vertigo before. A very few times before surgery and more regularly since. There was week about this time last year when I lolled around walking like I was on the deck of a ship at sea. But yesterday’s encounter was by far the worst. If I lay on my side and didn’t move I felt ok. But if I sat up or, heaven forbid, tried to stand the room swum and made me nauseous real quick.

Jo’s away and I couldn’t even think about driving, so the medevac involved my father coming to collect me and an embarrassing retreat back to my parents’. With a stop on the way to throw up and another one at the after hours medical centre in Lower Hutt.

Today I’m feeling a fair bit better; either because the Stematol is working or the vertigo passing. More than anything else though I really want a break. A year, a few months even, with less pain, no heart worries and no new symptoms to try and work my life around. I know I shouldn’t moan as things could be much, much worse but this evening I’m just a little tired of it all.

December 6, 2009

Questions

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:31 pm
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Sometimes life with a chronic disease feels as much as anything else like being attacked by a flock of questions.

Is the problem with my liver function going to get worse?

If it does, will I have to stop the methotrexate?

If I stop the methotrexate will I be able to get TNF inhibitors?

If I go on TNF inhibitors will I be able to travel overseas?

Does the fact I feel sore this week, mean the methotrexate’s stopping working?

Or maybe it’s just a bad week and maybe I could lower the methotrexate dose and that would help with my liver?

Do the people I see in Australia know what they’re talking about? Does my rheumatologist?

Could I find a new antibiotic to try? Could I find a doctor who would prescribe it to me?

Is work making my arthritis worse?

Would it help if I eliminated all starch from my diet? If I did that, what would I eat?

Why do I still get breathless?

Is the ongoing inflammation damaging my ascending aorta? If it is, would I survive surgery to have it replaced?

Questions.

November 29, 2009

Failure

Filed under: Reactive Arthritis — terence @ 10:06 am
Tags: , , ,

Wave buoys, weather maps, and a rising south swell. That was the start of it. A plan that built through the week. A plan that grew in increments with each furtive scan of the internet surf reports. Along the way I accumulated a couple of guys I knew from work. Out of towners. I figured I take them to my old local spot.

It was touch and go, as summer swells are, but on the day there were waves. A little weak, a little wobbly, but, we all agreed, worth a surf. So we paddled out under the low grey sky. The water was brown and silty; run off from the swollen local creek. As I paddled through it, black swirls trailed under my arms.

It wasn’t an easy day. The drift took you off the takeoff spot. And the swell lurched and burped, no where near as strong as predicted. But more than that I couldn’t surf. My hip ached, my legs resisted the jump to the feet motion at the beginning of each ride and by the end, a few half rides later, I couldn’t stand on my board.

As I pulled on damp clothes in the drizzle afterwards, I wondered about my health. Some weekends I can surf, just. Others I just can’t. I’m better than I was (courtesy of ongoing megadoses of methotrexate.) And that’s ok, or it’s great even, but as I stood there on the beach in the fading light, it was hard not to think about the half empty cup, and the waves I couldn’t ride.

September 27, 2009

Windows

Filed under: Aortic Valves,Reactive Arthritis,Surfing — terence @ 6:55 pm
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I woke from a God-awful dream. For a little while I just lay there, letting it melt away; leaving the place where anxieties shape reality and returning to the world where they only reflect it. The Southerly was blowing. Listening, I started to go over the plan, born of a mid-week weather map and argued ever since. A Tasman low, a west swell and a reef tucked in out of the wind. My doubts moved across the wind (too strong?), the swell (already gone?) the crowds (everyone knew), before settling on the real issue – my body.

I’d tried surfing three times since surgery and since the arthritis came back. Each effort a mixture of failure and success. In the water, (in the water!), but in aching joints, meaning I could only just get up, slow and awkward, often as not too late to my feet.  This time though, I figured I had an almost solution, I’d started taking Methotrexate on Wednesdays, so as that the full force of the drug would be felt over the weekend. The difference wasn’t huge but it might be the enough to allow me to surf properly.

“Get up and give it a try,” I told myself.

Written now, after the fact, it seems simple enough. Give it a try, and if it doesn’t work, oh well. But as I drove along the weaving road the sea, with nervous internal chatter I managed to pull the problem apart and look at it a hundred ways.

At the ocean’s edge, my doubts were answered one at a time. The swell: small but a perfect size for me. The crowd, mostly just guys milling around in the car-park complaining that the swell wasn’t bigger. And the wind, strong, but ok.

I paddled out on my own, in the channel that ran between the point and the reef itself. Out the back, heart hammering and breathless as ever, I waited for a wave. Behind me, at the head of the valley that tilted down into the bay, a giant white windmill spun, turning the Southerly into electricity with patient sweeps of circling arms. Beyond it, the hurrying sky carried clouds and blue off into the north.

Eventually, a wave came my way and I set my own arms circling, trying to build speed to tap into the steepening slope. Paddling, paddling and then in an instant I had it and reflex took over. To my feet and this time, in time. Slow. Sore. But fast enough and free enough to have me up and off down the line. The swell steepened and walled up and I sped along the face, around the bend of the reef and into the bay, where I coasted over the shoulder and into deeper water.

Hah!

Behind me, the windmill kept spiralling away. And out to sea another set of waves lifted the shimmering water, and I took protesting arms and constricted lungs and paddled out the back just as fast as I could. So I could catch another. So I could catch as many as possible. Making the most of the window I had.

August 27, 2009

Don’t Worry

Filed under: Aortic Valves,Reactive Arthritis — terence @ 7:44 pm

To the person who found my blog by googling “reiter’s syndrome will it kill me”. If you’re reading this, and if you’ve read my blog – do not worry. Complications of reactive arthritis as severe as those I have experienced are very, very rare.

August 23, 2009

A Year and two days

Filed under: Aortic Valves,Reactive Arthritis,Surfing — terence @ 9:08 pm

Yesterday, a year and two days after open heart surgery, on a day when the nor’easter spilled out over the sea and a small South West groundswell curled over the sandbanks, my wife, her friend and I went for a surf.

With the white V’s of snow covered mountains behind us, and the sun dodging licks of high cloud, we waded into the sea. I managed to pilot my big, blue learners’ board beyond the whitewater. Out back I waited until a small clean right hander rolled my way. As the wave picked me up I attempted to jump to my feet – back, knees and ankle all protesting the contortion. Ankle especially – the sharp shock of pain cleaving through it almost toppled me. But it didn’t. And the friendly little swell forgave my clumsy start, leaving me time to turn down the line. I swept across a couple of sections adjusting, trimming, turning – sailing – sploshing down eventually in the shallows.

It was a very shaky return, each wave hurt my ankle more, my heart felt funny, and I struggled for breath worse than I ever did before surgery. And, when I paddled down the beach to try and surf some of the steeper lefts, I failed, more or less.

But I made it. Nothing so certain as a come back, my body feels too fragile to try it again for a while. But I rode a few waves. I surfed again. And that was pretty sweet.

July 18, 2009

The Comeback

It was the best day I’d seen at the best surf spot around these parts. Surf law says I can’t give the game away and tell you where it is, or even reveal too many telling details. So maybe it was a beach-break with the best sand bar ever, or maybe a rocky point, swells crunching down its length. Or maybe a river bar after the flood of the decade. Or maybe a long shallow reef. The main thing is, it was the best day I’d ever seen. Just the, best, day. Double head high sets, blue-green walls, held up by an offshore wind until they spun off down the line, in hissing curving tubes.

The car park was full. Someone videoing the action. Someone nursing a snapped board. Hangers on, restless dogs, people exchanging excited diagnoses. Out the back was a serious pack of serious surfers. Old grumpy guys, locals, rippers, wanna be rippers, and one weird guy who limped down the beach and paddled into the line-up wearing a single white shoe.

The weird guy, that was me, of course. My heart hammering as I paddled. Watching the waves, breaking faster and angrier as they sped down the line. I tested the shoe with my good foot. I had to wear it; I couldn’t stand on a surfboard without it. The pain in my heal was too much. The padding of the shoe helped, got me into the gentle waves round home. But now as I paddled out along the edge of the exploding whitewater towards the serious pack of serious surfers I wondered what would become of the shoe and I should we actually catch something.

It wasn’t that I hadn’t surfed waves like that before. I had – plenty of times, from the outer edge of Atlantic Islands, to the murky beaches of Mexico, to the coral reefs of the Indian Ocean. But I’d done all that when I was whole. When mind and body worked as one. Now I wondered: could I even get to my feet quick enough; would I trip over the shoe; would I snap if I did.

In the end it all came down to one wave – my first. It broke wide, away from the pack and I spun into it a little way down the line as the barrel started to race. Lots of things could have happened: I could have been caught in the lip and pitched into the shingle; I could have nose dived on the drop and slapped into the shallows, I could have slid sideways under the lip as I tried to angle into the tube. Could of, could of, could of, but – in that instant, in that moment the story hangs upon – didn’t. Instead my feet fell into place under me, I made the lurching drop and pivoted into the tube, racing the raucous breaking swell. In the end I lost the race – flipped over the falls. But by then I knew all I needed to know. I knew I could still surf. I paddled out the back, where the serious surfers bobbed like black swans, and started catching waves, big draining barrels, beaten by some but making most, swooping through tube after tube, board chattering, hurtling towards the channel. Even the grumpy old guys hooted me on a couple. I can not tell you how happy I felt.

That was 2005. Back in the present, the methotrexate is helping. I’m getting round a lot better. But I’m still a long, long way from surfing again. Hoping though, as you can imagine, for another chance at a come back. They’re almost worth going away for.

July 1, 2009

Spray on Anesthetic

Filed under: Reactive Arthritis — terence @ 8:40 pm
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I don’t think spray on anesthetic ever really caught on. It must have seemed like a good idea – local anesthetic that could be applied without a needle. No need for all that nasty jabbing and piercing. It sure seemed good to me, back in 1999, when the rheumatologist at Charing Cross Hospital offered to use it when he drained the fluid off my softball sized knee. I’ve never got on with needles. It’s almost a phobia. As I waited for my appointment I’d been pacing round the waiting room trying to think brave thoughts, disturbing the old ladies queued up for their gold-shots. As it was, the draining of my knee already involved a big, thick needle through which the fluid was to be sucked out. So one less needle seemed like a great idea. “Sure, I’ll give it a go.”

And now I know why spray on anesthetic never caught on – it doesn’t work. It made my skin slightly numb but that was it. The fluid draining needle just laughed at that, cut like a dagger through my skin and gnawed on as many nerve endings as it could. I was in agony from the start. Things didn’t get better when the rheumatologist started squeezing my knee to get the fluid out.

“Ow. Ow. Ow!”
“How’s that anaesthetic working?”
“Not so goo-ooooouu-ooouuu-dddddd.”
“Nurse, I think you’re going to have to restrain the patient.”

The nurse, I can’t remember her name – although, oddly, I do remember she was from Winchester – pinned me back against the bed. The draining continued. I wasn’t particularly brave.

“Arrrrgggghhhh. Oh god stop. Stop please. The needle, it’s killing me! ARRGGHHH”

He didn’t stop. Although, sometime, maybe halfway through the process, he did look up and pause for a moment.

“Nurse,” his voice took on a thoughtful tone, “do you think we should close the door to the waiting room. Perhaps?”
Both the nurse and I turned to look. The door. We’d all forgotten. Wide open. The whole time. Conveying my screams.

Later, after it had all ended, I limped back out. The waiting room was still full. With little old ladies. Most looking quite a lot paler than they did when I went in.

May 29, 2009

The Three M’s – Methotrexate, Melbourne and Me

Filed under: Reactive Arthritis — terence @ 8:44 am

So, finally, I’ve started taking Methotrexate. This is the immunosuppresant commonly used to treat Reative Arthritis when it gets severe. I’ve held off taking it for so long. Why? Partially, because when it was first suggested to me in 2003 it was unclear I actually needed it. Partially, because I’ve been afraid of its potential side effects. Partially, because I’ve thought of it as a way of dampening symptoms rather than a cure (and I’ve always hoped for a cure). And partially, because, while the few people I’ve known on Methotrexate have benefitted from it, they’ve never done that well.

Was I right to do this? If you’d asked me that two years ago, essentially in remission and unaware of my heart problems, I would have said ‘yes’…but now…immobilised and unable to risk more damage to my aorta, the answer is completely different. So I’ve started taking it.

Last week I also returned to Melbourne to see the doctor and naturopath there. I figured they’d hate Methotrexate but they didn’t, so I’m continuing with the diet and anti-biotics as well.

More important than all that, maybe, was South Melbourne itself. Nestled against Port Phillip Bay. Two blocks back the Nappean highway chugs its way alongside cracked footpaths and carbon stained buildings. Supermarkets, delis, and chemists stand next to each other, wearing uncomfortable shapes. People shuffle around, worn,  or harried, or overweight, in in mismatched clothes. Depressing. And yet, on the morning of my appointment I wandered down to the beach. The sand is golden and mist is lifting off the sea. It’s glassy calm and the water sits quiet and clear over the sandbars. To the north and across the bay fog swallows the distance. The sun is warming the world and in South Melbourne ugly and serene seem to get on surprisingly well…

May 17, 2009

Wandering Blog Goodies

Filed under: Ramblings and Musings,Reactive Arthritis — terence @ 9:29 am
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The Italians are coming! (Owen Barder in Ethiopia)

John Quiggin excerpts Akerlof and Shiller on neo-classical economics’ starting points and the weaknesses that come with this:

The economics of the textbooks seeks to minimise as much as possible departures from pure economic motivation and from rationality. There is a good reason for doing so – and each of us has spent a good portion of his life writing in this tradition. The economics of Adam Smith is well understood. Explanations in terms of small deviations from Smith’s ideal system are thus clear, because they are posed within a framework that is already very well understood. But that does not mean that these small deviations from Smith’s system describe how the economy actually works
Our book marks a break with this tradition. In our view, economic theory should be derived not from the minimal deviations from the system of Adam Smith [needed to provide a plausible account of observed outcomes – JQ] but rather from the deviations that actually do occur and can be observed.

And Ben Goldacre has a column that shows just how economic power can skew scientific method. And which should scare you even if you’re not arthritic.

In Australia a fascinating court case has been playing out around some people who had heart attacks after taking the Merck drug Vioxx. … The first fun thing to come out in the Australian one is email documentation showing that staff at Merck made a “hit list” of doctors who were critical of the company, or of the drug. This list had words like “neutralise”, “neutralised” and “discredit” next to the names of various doctors. “We may need to seek them out and destroy them where they live,” said one email, from a Merck employee. Gosh okay, see you at mine later…
.They’re also alleged to have used other tactics, like trying to interfere with academic appointments, and dropping hints about how funding to institutions might dry up. Institutions might think about whether they, in turn, wish to receive money from a company like that.

But bigger, and better, is the publication Merck paid academic journal publisher Elsevier to produce…But this time Elsevier Australia went the whole hog: they gave Merck an entire publication to themselves, which looked like an academic journal, but in fact only contained reprinted articles, or summaries of other articles. In issue 2, for example, 9 of the 29 articles were about Vioxx, and 12 of the remaining were about another Merck drug, Fosamax. All of these articles presented positive conclusions, and some were bizarre: like a review article containing just 2 references.

In a statement to The Scientist magazine, Elsevier initially said that the company “does not today consider a compilation of reprinted articles a ‘Journal’”. I would like to expand on this statement. It was a collection of academic journal articles, published by the academic journal publisher Elsevier, in an academic journal shaped package. Perhaps if it wasn’t an academic journal they could have made this clearer in the title which, I should have mentioned, was: The Australasian Journal of Bone and Joint Medicine.

May 2, 2009

Bone Tired

Filed under: Reactive Arthritis — terence @ 8:25 am

There may be no good name for my illness, but the English language does provide just the right words for the way I feel right now: bone tired. I’m weary because moving makes me ache – both where bone meets bone and where bone meets muscle – and pain is exhausting. I’m weary also because I (probably) have anemia of chronic disease. Which you get, apparently, because your bone marrow isn’t producing the red blood cells you need.

So, bone tired.

April 28, 2009

Life in the Slow Lane

I was living in London when I had my first attack of reactive arthritis. Every couple of days I’d take the underground from Bethnal Green where I was couch sitting to Charing Cross Hospital. Sometimes, when I felt up to it, I’d stop and sight-see on the way. I was more mobile then than now, but still painfully slow.

And so I spent a lot of time hobbling in and out of Tube Stations. I would alight from the train, shuffle out of the way, and start towards the exit. First amongst a throng, then a crowd, then a trickle. Then by myself, in the empty echoing tunnels. If the station was large enough, or the walk long enough, other trains would arrive, and the walkway around me would fill with sound and people again, before it emptied out. Occasionally, I’d have company; the brave or determined elderly. Sometimes there’d be a line of us, spread out along the handrails like mountain climbers on a rope.

The other day, I was having coffee with a friend who also has a chronic illness. We talked, as we often do, about the frustrations of being unwell. One frustration that I wouldn’t have predicted in the days before the arthritis is the frustrated grind of expectations, the things I want to do with my life, still set by the norms of the people around me and life before I was sick, against the realities of being unwell. Things could be much worse, and I’m lucky and have a lot to be thankful for. But it’s hard not to feel sorry for yourself sometimes when it seems like life’s bustling out of the station in front of you, and you’re left limping along behind.

Or, at least, that’s the glum view of it all. What I need to remember is that, despite the faltering steps, I still made it out of the Underground in the end, and got to see most, if not all, of the things the city had to offer…

April 19, 2009

Gravel Roads and Aching Bones

Wednesday

Holidays in aching bones are different, but different isn’t always bad. I’d rather be walking or surfing but I’m not. And so –

When you can’t move much you think carefully about the place you’re going to stay. And when you’re there, you notice things that might have passed you by had your own momentum been greater.

We’re at Riversdale, staying in a cabin in the grounds of Orui station. A quiet bend in the coast; the weather tempered by topography. Other than summer holidays it’s rarely busy; on weekdays in winter it’s on the edge of empty. There are irritations – joyriding teenagers in quad bikes first amongst them – but they’re usually escapable.

On calm mornings, the sun wakes up over the glassy sea, warm from the first, washing everything in melted red, then green. On days like today when the Nor’Wester is blowing the sky becomes stretched; rain clouds trapped far to the west along the Tararuas, high clouds spread out, hurrying – bent by the jet stream into streaks and sweeps.

The first afternoon we were here I went for a bodysurf. Limber enough, just. Catching the waste high waves that pitched over the sandbars. I even got a couple of barrels, a couple of moments watching the pitch and swirl of watery light before being tumbled through the shallows. As I did all this – some weird middle aged guy in a wetsuit and a hood, bounding about in the already too cold sea – the day gave way to evening and strokes of sunlight turned everything to a weary rural gold.

Yesterday we drove up to the empty coast at Otahome, looking north to Castlepoint. Today I’m sitting by the cabin, on the edge of the homestead’s gardens, kept company by the farm cat. There’s a grey warbler singing somewhere and the wind is in the trees, coaxing quiet applause from the poplars and sighs from the ancient pines.

The sky is sailing by – a storm in the Tasman maybe but here, two mountain ranges East we’re far enough away for all of that to be missing us, resting by the sea.

-~-

Sunday

And yesterday we drove home, via Flatpoint, along the gravel forestry road, break pads smelling of burning dust. I scanned the coast for surf spots and we made it to Gladstone by late afternoon. The grass was still summer brown but the willows and poplars were filled with autumn colours. Chocolate in Greytown and sun set as we got home.

March 22, 2009

And as the steriods wear off…

Filed under: Reactive Arthritis — terence @ 8:57 am

…I feel flat and prickly, like a run over hedgehog.

March 18, 2009

Ode to the Hutt

Filed under: Reactive Arthritis,Staying Places — terence @ 6:04 pm
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I grew up in Eastbourne and even for an awkward fit like me that brought with it certain snobberies. Chief amongst these being the one we cast over our shoulders back in the direction of Lower Hutt.

My teens took me through high school there so, to be fair, I at least had evidence for the grudge I bore: the bogans, the black jeans, the way the parties always ended in fights. The smoggy conformity, the prefab pride. That fucking shopping mall; tumorous, relentless, eating through the heart of the city. The architecture in general.

But that was then. Today I’m sitting on the 6th floor of Hutt Hospital receiving steroids intravenously. The view out the window is hemmed by hills. Worn geometric skeletons behind Belmont. Green regenerating ridgelines converging north. The lurching Tararuas. In between, lazing in the forgiving sun, is a valley I’ve never seen before: sports grounds and hopeful homes. Trees everywhere, hiding roads and nestled round red-tiled rooves. Nikau palms like landed stars, white ivory eucalypts. Willows along the river and Norfolk pines stretching taller than the building I’m in.

Every once in a while black-back gulls glide by, sailing on confident wings, letting out their gloating cry. They’re right you know; Lower Hutt is really beautiful. Truly.

-~-

On an unrelated note, one of the most common side-effects of methyl-prednisolone is a ‘high’: a state of mild but giddy, euphoria. Did I mention that?

March 4, 2009

A-ha!

Filed under: Reactive Arthritis — terence @ 6:32 pm

The mystery of my painful, but unswollen, left knee was resolved last night by the rheumatolgist – referred pain from my left hip.

The bad news: my arthritis has been getting worse again; hips damage easily; and I’m back on steroids.

The good news: I now know my body just a little bit better; the rheumatologist gave me some good treatment options; the roids are making me feel better.

February 18, 2009

One of these things is not like the other one

Filed under: Reactive Arthritis — terence @ 4:39 pm

kneesstouse2

Funnily enough, my left knee is every bit as painful as my right.

February 10, 2009

Illness

Filed under: Aortic Valves,Reactive Arthritis — terence @ 6:50 pm
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Jeremy at Scoop Review of Books has very kindly published my review of Havi Carel’s book Illness on the SRB website. It’s also below.

As an alternative to the review you could read this article by Carel in the Independent.

Illness – Havi Carel

“Empty,” the ancient Greek philosopher Epicurus once wrote, “is the argument…by which no human suffering is healed; for just as there is no benefit in medicine that does not drive out bodily diseases, so there is no benefit in philosophy if it does not drive out the suffering of the soul”.

Havi Carel understands this better than most. A philosophy lecturer at the University of the West of England she was diagnosed in 2006 with lymphangioleiomyomatosis (LAM), a rare, degenerative, terminal illness present most acutely in the lungs. A transplant might extend the span of her years, but donors are scarce, and even then it only buys time. In the end, either way, short of a miracle she can expect the steady loss of lung capacity and, eventually, death. Lymphangioleiomyomatosis is an illness for which medical science has no cure.

Illness is Carel’s attempt, in the face of this, to muster the tools of her own trade in search of a cure of sorts. Philosophy may not be able to arrest the cell over-growth and cysts in her airways, but the story of an illness is never a purely physical tale. How we think about illness and, equally importantly, how society around us thinks about it, matters. And it is to this that Carel directs her attention.

Philosophically speaking, medical science has been anchored in a form of naturalism that describes and deciphers diseases as physical processes. To this way of thinking arthritis, for example, is an illness of the joints (and depending on the type possibly other body parts). It can be described in terms of physical symptoms (pain, swelling…), causes (in the case of the arthritis I suffer from complex microbiological interactions between a trigger organism and my immune system) and treatments (anything from Ibuprofen to immunosuppressants and steroids). In a naturalistic, sense it is an illness of physical cause and effect which begins and ends with the body.

There is much to be said for such an approach to thinking about ill-health. Built upon it is an understanding of disease that has rid the world of smallpox and nearly rid it of polio, and which has transformed the Black Death from a civilisation shattering plague to something that can be treated with antibiotics. Medical science based on naturalistic thinking has lengthened life and improved lives. Yet, as Carel explains, it remains insufficient.

Insufficient because, for the sufferer, illness is much more than its physical symptoms alone. In a series of examples from her own life that are both moving and illuminating Carel illustrates this. Illness has reshaped the geography of the world she lives within: hills she used to cycle up become insurmountable as her lung capacity diminishes. Stairs are now climbed as hills once were. Illness has reshaped her sociology: unsure how to react, friends avoid her; strangers in the street laugh cruelly at her oxygen tubes; the staff at medical facilities have a huge impact on how she feels through acts as simple as offering a warm, caring greeting (or not). Most of all, illness has reshaped her self: it has driven a wedge between her mind and body. Actions once automatic and taken for granted have become difficult or impossible. Her mind struggles to keep up with the changes; at night she dreams of running but will never run again.

Using these examples Carel contends that we can better tackle illness by augmenting naturalism with phenomenology. Phenomenology is an approach to philosophy which seeks to understand life as it is experienced by those living it. In the case of illness, phenomenology emphases the importance of understanding illness as it is experienced by those who are ill. The physical processes of disease will, of course, play an important role in such experiences (and it’s important to note that Carel isn’t suggesting that we discard naturalistic understandings of health, but rather that we augment them) but so will factors stemming from outside one’s body.

Influenced phenomenology, medical professionals and society more generally would seek to treat the sick not just through medicine but also through the way we treat them; how we interact with them in our day-to-day lives, how we shape the world to ensure that their physical limitations do not lead to their exclusion, how we provide them with space to adapt to their newly acquired circumstances. It is easy to sympathise with someone who is sick; it’s a lot harder, unless you’ve been there yourself, to empathise, but if we’re willing to try and at least understand how being ill makes people feel, and how our interactions with those who are ill make them feel, we will do a much better job of helping them feel better.

Of course, these arguments aren’t entirely novel. They have been advanced by disability and illness advocates for some time and to varying degrees have already impacted on the medical profession and society at large. But, as Carel’s own experiences show, there is still much to be done. And Illness’s strength is to place these arguments into a coherent whole which draws a line all the way from the philosopher to the patient.

In the book’s later chapters Carel shifts her gaze away from society and inwards in an attempt to see if phenomenology has answers to two personal questions that loom large for the seriously or terminally ill: how to face one’s fear of death. and how to approach the rest of one’s life.

On the issue of death Carel makes use of two guides – Epicurus and Heidegger – who at first glance appear to have beliefs about mortality so profoundly at odds with each other as to be irreconcilable. On one hand, Epicurus’ advice for those who fear death is simple: don’t. Get over it. Rationally, he argued, there is nothing to fear in death as being dead is not something we’ll ever experience. We’re right to fear suffering, Epicurus believes, but in death we won’t suffer for the simple reason that we won’t be there. Heidegger, on the other hand, argues that all human existence is “being towards death” and as such there is no escaping the presence of death in our lives. Indeed, life can only properly be lived once we understand it as finite.

Epicurus advises us not to worry about death, Heidegger would have us constantly reminded of it – Carel tries to negotiate between the two. With Epicurus she agrees that there is little to be gained by worrying about death itself. But, at the same time, she also agrees with Heidegger that we do have to understand the presence and inevitability of death in our lives, as it inescapably shapes them. What is needed is not to come to terms with death itself but rather the fact that our lives are finite and then to learn to live them in light of this.

Following from this, Carel has two pieces of advice for the seriously ill wondering how to live the rest of their lives. First, adapt to the constraints of your illness and do so in a manner that enables you to best do those things you are still able and want to do. (Carel has a motorised bike, which takes her along the routes she used to cycle; she no longer goes to the gym but still attends yoga). Second, learn to live in the present – don’t let the quality of the life you have now be dampened by fears of the future nor yearning for those things which you are no longer able to do.

Once again, this advice won’t necessarily be news to some readers. Similar suggestions can be found in any number of books written in the ‘self help based loosely on Eastern philosophy’ genre. But what is interesting in Illness is to see Carel teasing such conclusions out of Western philosophy. Illness also benefits from a no bullshit approach to its arguments: they’re all the more convincing for being constructed succinctly and logically, and without wide-eyed appeals to things that can’t be true or can’t be known.

One potential criticism of Carel’s advice on how to deal with the personal challenges of life and death when ill is that it’s all much easier said than done. Of course, just because something is difficult doesn’t mean that it’s impossible, and Carel’s own life as detailed in the book shows how much can be achieved. But if you can find such a work, Illness would be well complimented by a similarly intellectually rigorous book that discussed techniques for coming to terms with death and ill health in greater detail.

I’m not a philosopher so ultimately I can’t vouch for the strength of Carel’s arguments on philosophical grounds (although I can attest to the accessibility of her writing to those who aren’t philosophically trained). I do, however, have some experience with illness. I read Carel’s book during a year in which I underwent open heart surgery to replace a damaged aortic valve and part of my ascending aorta. I also had to deal with a severe relapse of the reactive arthritis that I suffer from (and which caused my heart problems in the first place). While neither of these events are of the magnitude of a diagnosis of LAM, they certainly left me with plenty of reasons to dwell on death and being unwell. It was only a relatively minor risk, but the chance of dying during surgery was something I couldn’t dodge in the lead up to the operation. And, courtesy of the arthritis, I know all about the way illness changes one’s geography and the relationship with one’s body – there are days when my toes seem like a long way away, let alone the hill my wife and used to walk up regularly for our evening exercise. So for me Illness had a particular personal resonance. But it’s also a book I would recommend for anyone – healthy and non-philosophically inclined included – because inevitably, directly or indirectly, sooner or later, the way you yourself and society around you thinks about illness will have a major impact on your life. Think about it.

Wandering CRP Levels

Filed under: Reactive Arthritis — terence @ 6:35 pm

To be honest I’ve become nervous about posting good health news on this blog. It seems as soon as I do, I end up having to recant.

So, oh fickle health gods, I’m aware that things may well get bad again and I’m aware this is just encouraging news, not the happy ending I’d like. I’m also aware how sick I still am. But:

The following graph charts my C-Reactive Protein Levels for the last few months. C-Reactive Protein (CRP) is a marker in your blood which reflects to some degree how inflamed your body is. Normal range is, if I recall correctly, 0-7.

crp-chart

I am most definitely not yet better. I still hurt like heck and surfing and hiking seem like impossible dreams. But it is good to have some confirmation of my sense that I’m on the mend.

Fingers crossed.

[Update: Oh, and Ironically enough, I’ve been in more pain than usual the last two days…]

February 4, 2009

Decisions, decisions…

Filed under: Aortic Valves,Reactive Arthritis — terence @ 6:38 pm
Tags: ,

It’s been almost three months since the relapse. And question of the moment is, “am I getting better?”

I have to be getting better. I can’t afford for the arthritis to last too long. I can’t risk more damage round my heart.

And so, if my current treatment regime of diet and antibiotics isn’t working I need to try an alternative approach. This will mean a heftier set of side-effects, which I’d rather avoid. I’d rather avoid an even further broken heart too, though.

Am I getting better?

I am definitely better than when the relapse first hit. Mostly I can get by without crutches. Which counts as an improvement as I’m no longer taking Prednisone, Ibuprofen or Panamax.

But am I still improving? Because I’m not well enough – I’m still severely arthritic.

Am I still improving?

I don’t know.

It’s the questions you can’t answer that keep coming back – of course.

November 20, 2008

Roid Rage

Filed under: Going Places,Reactive Arthritis — terence @ 4:58 pm
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I’ve long forgotten his name, but I still remember some of his stories. ‘He’ was a Canadian backpacker who I met in a youth hostel in Cornwall. I hadn’t been travelling long and can remember being rather envious – as I ate my dinner of Vegemite sandwiches – of his ability to cook. More importantly though, new to the world of backpacking I was rapidly becoming attracted to everywhere on Earth. And so I listened eagerly as he told me tales of life in the Canadian ski town that he was from.

The one I’m remembering now is about the jocks. Big burly youths who drove big burly pickup trucks and who chomped on steroids to ensure they remained musclebound.

“Aw man, the worst was when they’d get Roid-Rage. The steroids would drive them nuts and they’d start smashing things up and wanting to fight you.”

I was still keen to travel to the Canadian west but I promised myself that if I ever made it there I’d avoid the berserkers and their trucks.

Anyhow, I am, of this morning, taking steroids (Prednisone). Not, I hasten to add, because I want to buff up for summer or because I want a bigger truck. But because prednisone is very effective in dampening inflammation.

Unfortunately, as our Canadian friends no doubt learned, one way or other most steroids are also very effective at ruining your body. Were I to take prednisone for too long I might end up moon-faced (that’s the reason why you only see photos of the young Che Guevara – who took steroids for his asthma – on t-shirts) and my bones could be damaged (I think), along with other uncomfortable side effects.

So I’m on the roids for a month. I just couldn’t cope otherwise – the pain was too much. The worst I’ve ever hard with my arthritis.

Hopefully, while the prednisone is dampening things down, the other meds I am taking will tackle the underlying disease process and, by the time I’m weaned off it, I’ll be feeling much better anyway. Otherwise, at least I’ve brought myself a month of low-pain living.

The good news is that I’m already feeling better for it.

Great – now I’m off to smash up the living room…

November 16, 2008

Travels with Crutches

I vaguely recall reading somewhere that people in wheelchairs often find themselves ignored in favour of able-bodied companions. I experienced this several times over the last few days as I was wheeled through Wellington, Christchurch and Melbourne airports. It was strange to vanish like that, although I don’t really begrudge the people whose questions passed me by. Almost everyone we dealt was helpful and, god only knows, were the situation reversed I can’t say for certain that I wouldn’t make the same mistake (although now I will be mchair-crutching-14ore careful).

Anyhow, I’ve never been assisted in airports before – even when my arthritis has been bad in the past, I’ve tried to hobble along under my own steam. Lesson learnt this time, though: it’s a huge help. I hate to think what the trip would have been like otherwise.

Thunder storms swept over Melbourne on the morning of the appointment leaving a sky of swollen grey clouds in their wake. Jo and I were apprehensive. Maybe the doctor and naturopath who I see would say there was nothing that could be done. Maybe their prescribed advice would be impossibly far-fetched, or impossible to put into practice. But our fears were unfounded: a change to my medication, a reminder to be strict about my diet, and confidence on their behalf that I could turn this latest relapse around.

Relieved, Jo and I left the appointment to find the clouds broken into small manageable tufts that the wind was busy sweeping away. Nothing is certain yet, of course, I don’t know if the changes will help. But I’m hopeful. Time – the next couple of months – will tell. If the changes work, great. If they don’t I’ll return to conventional approaches, and the heftier set of trade-offs that come with them.

That afternoon, Jo and I made the most of the improving weather by finding a pleasant golden-sand section of Port Phillip Bay and paddling in the almost warm water which glistened under a blue sky and the bold Australian sun.

November 10, 2008

Crucking Futches

Filed under: Reactive Arthritis — terence @ 5:48 pm
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crutches-modified

Ok, I really shouldn’t complain.

As the sticker shows, they let me perform my democratic duty on Saturday. And without them right now I would not be able to walk.

But, dang, crutches are annoying.

Prop them up on any wall without due care and they will fall. They’ll take out your shins (happened today) or break something (during a previous spell on crutches they managed to fall on and break a vase that Jo was given by her grandmother). And then they’ll be on the ground, taunting you, as you play slow motion twister, trying to bend yourself into a shape that lets you reach them.

Blah.

November 8, 2008

The Perils of Crutches

Filed under: Reactive Arthritis — terence @ 10:54 am
Tags: , ,

So close and yet so very, very far.

I woke up on Wednesday morning feeling slightly stiff. It was a nuisance but I wasn’t too concerned. Over the day things got a little worse but it wasn’t until I got home that night that I started to worry. I told myself it couldn’t be a relapse, but it was. Sometime after midnight I was crawling around the house trying to find my crutches. At dawn I called my parents; my wife was away and I couldn’t dress myself.

Mum raced over, got me dressed, took me to the doctor and cleaned the house for good measure. She was in emergency mode; Jo (who’s back now) and I are marveling at how much she cleaned in so little time.

So, anyhow, the arthritis is back – big time – for now.

Fortunately, I’m scheduled to go and see the doctors who treat it in Australia next week. So hopefully, they’ll have something. Until then I’m tired, sore and essentially immobile.

Oh yeah, and at risk of having this (below) happen to me again in the next North Westerly gale.

October 13, 2008

Two!

I’m no fan of blood tests.

It’s not a rational thing. I know they won’t hurt. I know the needle is tiny. And I know I need to have them – both to monitor the progress of my arthritis and to make sure that the Warfarin has my blood clotting rates within a safe range.

I know all this.

But none of it can shake that feeling. The suspicion that the thirsty, nasty, little needle-sword is really up to no good.

So why then was so I happy this morning despite discovering that I got the wrong blood tests done last week? After all, wouldn’t this just mean that I had go back to the bleeding room again?

It did, but the mix up which took place was that I got my arthritis tests done instead of my INR (blood clotting). It’s my blood clotting that I need to monitor regularly and frequently at present, while I wasn’t planning to have my inflammatory markers tested for a few more weeks.

And so, had the mix up not occurred, I wouldn’t have learned this morning that my CRP is currently two.

Yes, people, you read that correctly – two. One more than one and so damn normal it makes Karori look edgy (normal range for CRP is 1-7). The last time I got tested my CRP was in the high forties which, we hoped at the time, simply reflected the shock of surgery. We worried though that it might be a sign that my arthritis was returning in the wake of the trauma that my body had just been through.

In the land of chronic illness there is little that can be said for certain and without crossed fingers. But learning that my CRP is normal is good news – it certainly seems much less likely now that I will be revisited by bad arthritis any time soon.

[applause]

September 15, 2008

The Month So Far

Filed under: Aortic Valves,Reactive Arthritis — terence @ 12:56 pm
Tags: ,

“Here we go. Think of something pleasant.”

I closed my eyes and pictured myself riding waves – skimming across the glassy surface of the sea. Only for a moment though, then darkness crowded in, overwhelming first the periphery of my imagination and then the rest of my thoughts.

An instant later, or so it seemed, I was at work. Labouring on a never quite achievable task in the jumbled office space of a dream.

I did not, I think, dream for long before something else caught my attention – sound. Talk and the noises of the intensive care unit pulled me into the waking world, where at least 8 hours had elapsed.  I was aware, then unaware, lapsing back into sleep, then waking again for sometime before things steadied. People arrived – my parents and wife. I tried to scrawl a message on a piece of paper. I fell back to sleep – letters and words never quite formed. I woke up again and had the intubation pulled out of me. I can’t remember what my first words were but, drugged and happy to be alive, I was jubilant in the gently clearing fog. I gave the thumbs up to my parents, to my wife, to the semi-comatose complete stranger in the bed opposite me. As I found my voice, I cracked jokes and spoke to my sister on the phone.

For someone who’d just spent seven hours in surgery (four of them on the heart lung machine) and who had his aortic valve and a long chunk of his ascending arota replaced, I felt remarkably chirpy.

Inevitably, this didn’t last. My first night in ICU was horrid. Minutes dragged past like hours. I ached and couldn’t get comfortable, let alone sleep. The nurses were wonderful though. Kind. Helpful. Patient (I am, as my wife can attest, an utter wimp when I’m ill). One of them mixed me some diluted fruit juice. I don’t think I can even begin to tell you how nice this tasted.

After that first night things got steadily better. Winter sun spilled in through the windows of my ICU ward and I lapped it up. I stared at pictures in the Surfer’s Journal and, starting with captions, slowly found the strength to read.

After two days I moved back into the ward, which was to be my home for the next three. My reading skills advanced so that I could read magazine articles and a children’s history of Great Britain that my mother dug out of an old bookshelf. Friends came to visit and I started teetering along hospital corridors under my own steam.

I was released from hospital two days early only to return home to my most ill 48 hours since surgery. The first day I spent vomiting, on the second my memory collapsed. It’s slowly returning, but for the last few weeks I’ve really struggled to recall my immediate past. Other than that, recuperation so far has been pretty kind. My energy levels are low, and now I have a cold. Sometimes my newly ticking aorta keeps me awake at night and my upper spine aches. But I am getting better. And endlessly relieved to have surgery behind me.

Update: my wife informs me that I didn’t vomit all day; just once, after eating. Well it felt like I vomited all day. See, I told you I was a wimp when ill.

August 31, 2008

Life as a goldfish

Filed under: Aortic Valves,Reactive Arthritis — terence @ 1:42 pm
Tags: ,

Terence: “Mum read through the list of common side affects of surgery today. Apparently, temporary memory loss is quite normal. Boy is that a relief to hear.”

Jo: pained look

Terence: “Oh, we’ve had this conversation before, haven’t we?”

Jo: sustains look

Terence: “And you’ve read that booklet before too?”

Jo: “Yip”.

So, I’m recovering fine so far, but very forgetful. It’s getting better though – I’ll try and post an update later in the week. Thanks to those of you who’ve emailed or posted comments

August 7, 2008

Update, a date, and gratuitous surfing

Ok, PET scan results are in and there doesn’t seem to be any active inflammation near my heart. So, barring the unexpected, it’s full steam ahead for the 20th of August for surgery.

The PET scan seemed to indicate that my aorta is less dilated than it appeared, too. So I’m hopeful – though no one can be sure until the actual surgery starts – that I may only need the valve replacement.

The only actual ‘bad news’ as such from today’s trip to the surgeon is that my previous understanding of the risks involved in the surgery was a little on the positive side. In reality it’s more like approximately 1% risk of death for simple valve replacement, 5% for valve and lower root, and 10% for valve and arch up to vicinity of arch.

[Warning, if you are reading this and in a similar situation as me, these numbers are not exact – they are just my surgeon’s educated guesses based on my own particular set of circumstances. You need to ask your own surgeon.]

So there we go.

Now, time for the surfing bit.

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