November 11, 2014 at 10:30 am (Jordi) (, , )

For me, October and November still echo with the anniversary of my ill health.

Perhaps after three years that shouldn’t be the case, but “shouldn’t” doesn’t change emotions. I am still processing the grief. The things I have lost, the way I have changed, the limits I feel constrained by.

In this loop of emotion, to me Melbourne Cup day is still the day that my friend snuck in pizza – my first culinary break from weeks of hospital food.

Remembrance Day is the first¬†day that I went outside, after four weeks of fluorescent lights, recirculated air, and nothing that lay beyond a ten metre radius of my room on the ward. (Limiting my variety of other spaces to two bathrooms, the nurses’ desk, and a corridor.)

This Remembrance Day I am back at the Alfred hospital. (Another test, another worry, another sick day.) And I am remembering three years ago.

Journal entry 11/11/2011:
‘Wheelchair found!
Surreal – so many people! So many people doing normal, routine things. Queuing in cafes. So much sound and movement, my head swivels everywhere trying to take it all in and my eyes feel huge.

Outside we pass through the sun and Mum parks me in the shade behind a crowd to watch the Remembrance Day service. The breeze is so fresh that every touch of it makes my skin, makes me feel alive and my eyes tear up already.

We sit through the speeches and readings and I people-watch. As 11am draws close more and more people gather ’round …even at the windows of the buildings, looking down, looking on.


A bugle. And silence.

I’d never really thought about the medical staff in war before. Even in current wars.

I give thanks – for being here in a country with a great healthcare system. For my doctors. For getting better. For my family and friends. I am so lucky. The wind blows and I cry.

Bugle. Bagpipes. My heart aches. By the time the high school band does their swing number I’m light-headed and overwhelmed. We retreat indoors. The dim light feels safe.’

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My monster says I can’t

August 13, 2012 at 1:37 pm (Jordi) (, )

I don’t think anybody likes having to say “I can’t”. They’re certainly words that I struggle with. I say them a lot, and each time they’re laced with disappointment, with embarrassment, with anger and defensiveness.

Our society rewards toughness. We’re a culture of battlers, of perserverance. Take a Codral. Soldier on.¬†Autoimmunes are the opposite of this. They demand quiet, stillness, rest. And the more you fight against this regime, the more sick you get.

My autoimmmune feels like I am carrying a monster on my back. Its talons dig into my shoulders. Its weight bears down on me, making everyday tasks just that much harder, and completely exhausting.

Image by Terrifying (deviantart)

Some days I can sleep for 12 hours and still wake up exhausted. Some days reaching above my shoulders feels like benchpressing 20kilos. Some days my brain is so mired in mud I can’t form cohesive sentences, let alone remember what I did yesterday.

It was this time last year that I first started displaying symptoms of my dermatomyositis. Then, I had no idea what was going on. Now, I am hypervigilant.

Everything is a balance. For everything I want to do, for everything I can do, I must also spend time with my AI monster.

I used to hate it. And I’d be lying if I pretended that every day I’m just peachy about this system. But I have realised that this monster is a part of me. This is life now, and its goal actually isn’t to ruin everything and kick me while I’m down. My monster is my protector. He tells me loudly and clearly when enough is enough. When I need to stop. When I need to rest. Because I sure as hell don’t listen otherwise.

I don’t know how long life will be like this. I am currently receiving IVIg treatment (cheers to all the blood and plasma donors!) which gives me a couple of weeks of feeling almost-normal, of feeling like the well of exhaustion that usually threatens to swallow me is securely sealed over. Maybe one day my monster will completely vanish. But even if he does, I know that hidden deep down in my immune system, he’ll always be a part of me.

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A Misdiagnosis

December 26, 2011 at 9:31 pm (Jordi) (, , )

In late September my body started doing some peculiar things – specifically, my forearm and thigh muscles would ache a little whenever flexed, and I was getting worse-than-usual neck stiffness and subsequent headaches. This made some activities like typing and standing up a little uncomfortable, but I did some googling, ruled out meningitis, reviewed the OHS layout of my desk, and concluded that my upcoming two-week holiday would likely cure all.

…I say holiday. It was in fact a much anticipated freelance engagement at the National Young Writers’ Festival, with some holidaying and family time built around it. I was burning the metaphorical candle at both ends trying to make the freelance work as perfect as I possibly could. The physical toll that I was under began to seep into my mental space – I started having anxiety attacks over things that usually wouldn’t phase me. I vividly remember at one point, having started to slide into a panic, deciding to do some yoga – maybe a few backbends and a good dose of child’s pose would level me out enough that I could keep working. I lay on the floor but couldn’t pull my knees up into the pose – it hurt too much. This was somewhat worrying, but stress does funny things, y’know? And I had an end in sight – if I just made it to 2 October, everything would be okay.

So I pushed on. I had a wonderful few days’ holiday in Sydney, where I whinged a little to my host about my sore muscles, how my knees were starting to ache if I walked too much, and how I was just feeling a bit fatigued… but this was my holiday, dammit, and I was determined to have a good time. My muscles were probably just taking a week or so to recover from that bout of stress.

We spent a day wandering (albeit slowly) around Taronga Zoo. I walked the streets of Newtown and Redfern.

Holiday! Zoo! Penguins!

I struggled to carry my suitcase to the upstairs seating of the Newcastle-bound train (I just overpacked. No, no, I’m fine. I can manage.)

By the end of September I was in constant pain. It wasn’t a strong pain – imagine, if you will, a headache all over your body – but its persistence against regular doses of ibuprofen wore away at me, and I was prone to a few tears by late afternoon.

On the morning of my last official Festival engagement I noticed I couldn’t see the small bones on the insides of my wrist. Definite swelling. There was more googling, a phone call home where my mother warned me about any ankle swelling being particularly dangerous (no Mum, my ankles are fine. I think it’s just my wrists. Maybe my knees too.) The decision was made that a doctor really did need to be consulted at this point, but as it was a long weekend in NSW… well… maybe in a few days, at my next destination.

The panel went really well.
So did the costume ball.

The next morning I couldn’t get my bra done up. I physically could not reach around behind myself. I cancelled the morning’s plans and took myself to an all-hours clinic. The doctor had no idea what was going on – blood tests were needed to find out, but no chance of getting those anywhere in NSW for two days. Not even at the hospital. He prescribed me a stronger dose of ibuprofen to help with the pain and possible inflammation. The chemist was closed for the public holiday.

I waited. And I festivalled. By the evenings I’d have to lie on the floor to join the household conversation because sitting hurt too much.

An evening at a Newcastle beach. Not a stock photo, believe it or not.

My mother stepped in as the voice of caution and reason. I needed to look after my health. And what if I was contagious? I couldn’t risk moving on to my next destination – my grandparents’ house.

Am I able to change my flight from Sydney to Melbourne on 8 October, to Newcastle to Melbourne for tomorrow?

I’m sorry, on your ticket type you can only change dates, not location.

Okay, I need to cancel my flight from Sydney to Melbourne on 8 October.

<Official Cancellation Speil no refunds blah blah agree?>

Yes, fine.

Is there anything else I can do for you today Ms Kerr?

Yes. Can I please book a flight from Newcastle to Melbourne for tomorrow.

I saw my Melbourne GP the same day I flew home. He told me it was soft-tissue inflammation and that I needed to go the gym at least five times a week. For cardio. Yoga doesn’t count. That I needed to learn to manage my stress. Take stronger anti-inflammatories and they’d run some blood tests just to be safe.

I spent a week in bed. As per medical advice I’d get up and do laps of the house, or go for a walk outside, to de-stress and stop my muscles from atrophying. I tried the anti-inflammatories (diclofenac) for three days because I was so sure if I could just get through the nausea, stomach pain, fever, and sensation of my muscles having been put through a blender & slapped back on my body that they caused, I would be okay.

Again, my mother stepped in as the voice of caution and reason. If the medication was doing more harm than good I should stop taking it and follow-up with my GP. The GP couldn’t explain my painful reaction to diclofenac, but he prescribed Panadeine Forte and another week off work. He said the blood tests were all clear – my vitamin D and iron levels were a little on the low side but not enough to cause problems. There was nothing wrong with me.

My mother moved in with me. Helped me to cook and get dressed. Bought a thermometer to track my fevers. Noted the rash that appeared on my legs with it. Asked the pharmacist for advice. Called the hospital advice line number he gave. Paid the $100 taxi fare to get me to the emergency department at the nearest big hospital.

The Alfred Hospital ran blood tests but they included a very important one: creatine kinase (CK). I returned 36 hours (and two more mega-taxi fares – thanks, Mum) later for the results, expecting a fresh batch of pills and maybe some bed rest. They admitted me straight away under an initial diagnosis of polymyositis and started running other tests – an electrocardiogram, a lung x-ray, an MRI… my CK was 28,000 (around 200 is normal) and they needed to make sure very important muscles that help you breathe and pump blood and generally stay alive were somehow coping.

I have dermatomyositis – my immune system is attacking my muscles. I lost most of my mobility and independence to it. For the better part of a month I couldn’t reach past my knees, couldn’t raise my arms above my shoulders, and couldn’t lift my legs properly. This meant I could not sit up, stand up (especially from low surfaces, like toilets), get into or out of bed, shower, shave, or dress myself without some form of assistance. And every physical action was exhausting. I couldn’t walk more than 10 metres. I struggled to cut up and chew food. Brushing my teeth was a mammoth effort. Flossing was completely out of the question – it required a strength I did not have.

I spent five weeks in hospital and three weeks in physical rehabilitation just to regain a shell of my former physical self. I’ve lost 13 weeks, and counting, of work time. I’ve lost a quarter of 2011.

Lesson: Your GP is not always right – listen to your body and don’t be afraid to ask for a second opinion. And if your mother is half as amazing as mine, listen to her too.

I won’t be going back to that GP. Not because of the misdiagnosis – my disease is rare enough I suspect most GPs wouldn’t have had any idea (although a blood test of CK levels would have been a nice start). No, I severed that relationship after I was kindly asked by my rheumatology doctor at the Alfred if the name and contact number I had provided for my GP was absolutely correct. When I confirmed it was, he revealed that he’d contacted my GP to get a copy of my medical records only to be told that they’d never seen me. Never treated me. Never even heard of me.

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