Learning to live with an autoimmune disorder – A mosaic of my journal
Cathy Beesey Founder Stories Connecting Us
Part 2: My Once Strong Healthy Body
The link to my memoir Contents and published chapters is at the end of this post.
Chapter 5: Slowly Taking Over
5 July 2019: five months after diagnosis I ask Doctor Jonathon Andrews, my main specialist, ‘How long could I have had Wegener Anca Vasculitis before diagnosis?’ ‘Between six and eighteen months.’ I will never know when it started. There were signs, I felt them, but I didn’t know what was happening. I couldn’t have known.
Symptoms of Wegener Anca Vasculitis
Slowing taking over
chest discomfort ✅ coughing up blood ❎ ear pain ✅ eye inflammation ✅ fatigue ✅ hearing loss ✅ hoarse voice ✅ inflammation and breakdown of cartilage ❎ painful joints ❎ painful muscles ❎ persistent cough ✅ runny nose ✅ sinus inflammation ❎ skin rashes, red or purple spots ❎ small sores in nose and mouth ❎ weight loss ❎wheezing and breathlessness ✅
Closer to diagnosis
blood in urine ✅ nights sweats ✅ recurrent fever ✅
This list of symptoms doesn’t include how I felt, losing myself. I cannot find the words to describe the feelings within. I try and try. I am not sure they exist. The closest I come is a prickly feeling; like I am not my true self.
My messages to friends Marg and Danni, a very occasional piece of writing and reflections in my journal tell my story – before diagnosis.
Stan’s extended family annual get together, November last year was at our home. His Aunt Nancy and others asking with concern, ‘How are you?’ It seems they sensed something, only seeing me once a year. Nancy tells me a year later, ‘You were so inactive, sitting, not moving, not like you.’ For Stan, close family and friends it was gradual. How much did they notice? I noticed something but couldn’t explain.
In one of our many conversations after diagnosis my cousin Linda, ‘You didn’t seem yourself in March last year when you visited us in Fremantle. I worried about you in Vietnam last July dealing with the heat.’ Cheryl my friend, ‘I wondered what was wrong last November on Melbourne Cup Day.’
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A constant dry cough early Autumn, through Winter, Spring and into Summer. Throughout this time GP appointments: increasing asthma medication doesn’t make a difference. Friends and family suggest the hundred-day cough, whooping cough, a virus of some kind. Most of all this cough is annoying.
Lightheaded, unable to cope with the heat, as though I am going to faint and a buzzing begins in my ears, sounding like crickets. It’s now early December. I remember these symptoms well, stopping me going to the gym four times a week. Walking 900 metres to the gym, running on the treadmill, lifting weights, all done with wonderful staff at Listen To Your Body, building my strength. I loved it. It is the physical stopping me going to the gym. I want to go, I need to go. I stop going.
December 2018: the sound of crickets in my ears, it doesn’t sound like ringing, all day every day. Sometimes I hear chanting, Greek Orthodox Monks, the ones we heard in Meteora Greece, the city of Monastic Life on Rocks. Other times a whistling sounding like a giant mosquito buzzing near my ear. With all this noise I cannot work out where sounds are coming from, disorientated, confused.
Never having problems with my ears this is something new, terrifying. What is causing this? Could it be a tumour? I give it nearly a week and then to a GP and an audiologist. Fluid in my inner ear. ‘It will go away,’ I am told, ‘There will be no ongoing hearing loss. It could take time.’ But how long? My internet research: at least six weeks before involving a specialist and four to six months before a grommet. I visit the GP once a week, not planned but in each new phase of desperation.
I cannot hear what people say, continually popping one of my ears to hear, only lasting thirty seconds. Conversation disjointed making it hard to understand, respond to what is being said and connect. Inadequate in my responses: not following stories, finding myself guessing. I want to be alone. What must it be like for people who always struggle to hear? I always thought I’d been sympathetic, now I know only to a point. Ray, Stan’s father and my Aunty Triss, I thought I knew what they went through and I understood what it meant to not be able to hear properly. Ray and Aunty Triss tried to explain through their stories. I didn’t hear them.
I know I like to talk and listen but hadn’t realised how much until I couldn’t have a proper conversation: withdrawn, frustrated, miserable, it’s hard to smile. I try getting on with life doing what has to be done in the lead up to Christmas: spending time with people, cleaning our home, gardening, choosing and installing fake grass in our backyard and Christmas decorating. Pushing myself, thinking this may help. It’s all so hard with my ears throbbing as though they will burst. No movement of the fluid in my ears and pain, such pain and frustration.
A Spanish inspired Christmas with the colours of red, white, and silver. Christmas Day with Stan’s family, fourteen of us. For the first time I won’t see my biological family Christmas Day. Henry my brother has decided he won’t travel to Melbourne from his home in Vietnam. Craig and Carrie, my sister’s children, with their families, decide they won’t come to our home.
The tables are set, one with our traditional red lace tablecloth, the other with white tablecloth and black lace runner with fans bought in Spain decorating both tables. Great food as always prepared by Stan. I can’t hear properly. Wanting to be alone I move away from the group, getting annoyed when someone comes and sits with me to talk. I watch the events of Christmas Day from above. Exhausted after Christmas I decide to make it easy for myself. I don’t arrange catch-ups, stay home New Year’s Eve 2018. I don’t do much, thinking rest will help. It doesn’t.
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January – messages to Marg, it’s all about my ears.
Not sure what’s causing it Hope to feel better tomorrow It would be hot in Adelaide
A bit better, fluid is moving ever so slightly when I have my head on the side That’s what I’m doing How are you
No better, I’ve been back to the doctor On antibiotics and chewing gum Have referral to Ear, Nose and Throat specialist, they open Monday How are you
Morning Marg Seeing specialist on Thursday Dr Luke Jones No better How are you
Hi specialist good, thorough and knowledgeable No tumours or inflammation in sinuses, new drug steroids which he said will make me feel great, stronger antibiotics, continue with spray for my sinuses, smells like burnt tyres Have to see him in a month, visit audiologist first No grommets yet, it’s a last resort He says this condition improves slowly, won’t happen overnight, it will take time and could totally revert to how it was after getting better I need patience, not good at that Such is life, now I need to create some new coping strategies
First day on steroids: two tablets of Prednisolone 25 milligrams. Fluid in my inner ear is moving, quite a sensation. By the end of the day congested again. Day two: an even greater response to the steroids with fluid moving in my right ear. The sound of my crickets is lessening, wondering if it’s the steroids. I don’t really care what it is, I like it. Energised, content, ready to work on my travel blog and to have those conversations I have missed so much.
What a test this has been: constant crickets, fearing my ears will explode, not being able to pop them, not being able to communicate comfortably with Stan, Danni, Marg, other family and friends. Exhausted, sleeping ten hours every night, waking each time I turn. I think I’ve covered the worst of it.
Hi Marg My ears are getting better and the steroids making me feel energised Do you want to go out for dinner tomorrow night Drinks here after Looking forward to a proper conversation Whoops not sure if you’re in Melbourne 🍾🍾🍾
12 January 2019 I wrote, not quite true but it’s as though I’m getting there: I can hear clearly now, The pain has gone, All of those bad feelings have disappeared.
Hi Marg I decided to self medicate this morning with steroids It’s helped with the pressure easing and the nausea improving Would you like to meet for brunch at 10.00 tomorrow
Over coffee, chatting I tell Marg I’m reading Dare to Lead by Brené Brown and have read some of her other books captivated by her approach to research as she builds categories from interviews, tests her constructs against other established research and shares her stories. ‘I have been playing with the idea of my most trusted. Marg you are definitely one of mine.’ I had already told Stan and Danni. I will come to learn there are others. Marg leaves and while I wait for Stan fatigue overwhelms and slightly out of control I buy new sheets, a light mauve deepened with red. I arrive home exhausted.
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January is coming to an end – messages to Danni.
It’s official I have the flu High temperature with my ears still the same Back to doctor Wednesday Lovely weather for your time away
I’m in hospital – John Fawkner I had an MRI today on my head, inner ears and will get results tomorrow I came in yesterday with vomiting I had a blood test that discovered extensive infection and I started intravenous antibiotics last night I could be home tomorrow or Friday Being well looked after Ears have eased Thanks for contacting Stan he appreciated it WTF OMG 😮
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Dr Reynolds, my hospital specialist, arriving 8.00am, always around 8.00am. Sleeping soundly after a night of a high temperature Dr Reynolds gently touches my arm, I wake with a fright, sit straight up. Dr Reynolds sits, smiles and laughs, then saying, ‘An MRI will be organised for you today.’ During my first visit to hospital, I have said over and over, ‘It’s my ears. It’s my ears.’ Time to shower and I laugh out loud seeing my hair standing on end, a tangled mess.
30 January 2019: There is nothing like an MRI to bring you into the here and now. Forms with the letters MRI are waiting. Completed as best I can, fear building as I realise this is one way of diagnosing dementia. Will I find out if I am to follow my mother and sister into a world of not knowing those around them and worse not knowing themselves?
The orderly takes me deep into John Fawkner Hospital, underground. Susan explains I am next to have an MRI. She is calm, relaxed and in control. I know so little, ‘Does it matter that my hair is still slightly wet?’ ‘No,’ with a smile. ‘I had eyelash extensions before Christmas, there are still a couple. Is that okay?’ ‘I’ve never been asked this, yes it will be fine.’ Susan gently explains, ‘At the beginning it is like you are on a building site. The noise is loud, and it feels like there is movement. I will talk to you through headphones. I will be right there if you need anything or to stop.’ ‘What do people do to get through this? Do they visualise?’ ‘Some do and others make shopping lists. Whatever you think you need to do, do it.’
Lying still as the emergency button is placed in my hand, giving me some control. My head is in a square shape, one side of the square is missing, earphones put in, my head held firmly in place with my eyes covered with a black mask. A screen is wedged in place, I’m not sure how it fits. ‘Do you want music, other sounds to listen to?’ ‘I don’t want birds or waterfalls. I don’t know what type of music.’ I never know how to describe my taste in music except for my love of country. I can’t imagine listening to this now. ‘How about pop or classical?’ ‘Classical,’ not sure why. Later I will choose no music, there is enough noise.
My body is moved inside a large machine, I lose all orientation, it is pitch black. Wanting to press the emergency button I hear Susan’s voice, ‘We are starting and this first one takes around a minute.’ With sounds intense I say over and over, ‘I am brave, I can do this.’ The first one is as Susan described with sounds of a construction site and steel girders banging into the sides of my head. Throughout the sounds and the duration change. Susan’s voice in between gives comfort.
‘This is the last one.’ It sounds like classical music. I see Richard Gill (1941-2018) legendary conductor, teacher of music and advocate for music education conducting this symphony. Tears fall, remembering the news item with dozens of musicians playing his favourite song The Dam Busters March outside his home, in tribute to him, before his death. Memories: privileged to have worked with Richard Gill on improving music education in Victoria as he shared his knowledge, passion and humanity. The MRI finally over, I wipe away the tears.
The next day alone, in my hands the results for the MRI, yes there is fluid in my inner ear. Now, dementia? Reading line by line results seem good. The last line something like – this brain is not extraordinary for a woman of sixty-one. What? Not extraordinary? OMG! As I try to make sense of this Stan arrives and reads the results, ‘It is good your brain isn’t extraordinary, it means everything is okay.’ Oh, embarrassed, and with relief realising I don’t have dementia. As I spend time with friends and family telling them my brain isn’t extraordinary, we will laugh with amusement at who I am and relief it isn’t dementia.
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Hi Danni Here is the update The doctor has been Yes fluid on the inner ear that needs to come out – causing chest infection etc – need to go to my Ear, Nose and Throat Specialist for this Blood test has shown some improvement I’ll be here until Saturday 2 more lots of antibiotics That’s me
I’ve been reading while in hospital Just sent you a Brené Brown quote I’ll keep it to one a day
Distressed and fearful, I’ve had seven days at home on the couch or in bed and four days in hospital with high temperatures.
Morning Danni I slept six hours wonderful to be in my own bed My ears are no better I’m free all day 11.00 is fine
Saw doctor yesterday, more tests, going back this afternoon No better really Can’t even read, exhausted
I remember the colour of my urine before I returned to hospital the second time. How dark it was, I thought I wasn’t drinking enough water, it was blood.
Danni hope you’re sitting down I’m in hospital again I’m not up to a visit today thanks I’m feeling better in myself but still waiting to find out next steps Take care think good thoughts I’ve been doing a gratitude each night before going to sleep – it helps
Having breakfast The doctor has been and I’ll be here for another couple of days Blood test for infection, it’s improved All other tests have been good Would love to see you today or tomorrow while I’m in hospital if that works for you
Danni brings beautiful yellow roses with a Wellbeing and an Italian Travel magazine. Quietly and with shyness, ‘The flowers had to be yellow. I don’t know why.’
To my dearest Danni it was wonderful to see you and let some emotion go from this drawn-out time, much love
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Danni did you know Dare to Lead is profiled in the wellbeing magazine? Found some great recipes for Stan, articles to go back to but I’m not taking up birdwatching to improve my wellbeing Thank you
Morning I’m not going home Looking more like an overactive immune system – they are now trying to isolate form – kidney doctor will come today and probably lead from now on Would still like a visit tomorrow – Stan will come after Hanging Rock Car Event and Marg may visit What would be a good time for you I need to stop thinking it’s fixed as there could be much further to go – I need to sit with this – so hard for me
Morning Danni, I do need to step into my vulnerability, and I’d like you to help me. Breathe as you read this … I’ve had a wonderful team of specialists that have quickly diagnosed I have a rare overactive immune system condition. This can be managed with medication starting with a three month program of tablets and regularly monitored by specialists. The doctors are positive. At this stage I will be in hospital until Tuesday. This is my diagnosis day. I am now in a private room and you can visit anytime. Room 26 same floor. I’m feeling fine so come if you want, when you want, I know you are with me. Much love Cathy 💜
Hey wonderful woman thanks for the visit And everything you said was just right for me, now 💜
I’m feeling good physically and as though my body is getting back to being mine and calm and focused and wonder if this is the drugs Had blood and urine tests yesterday and will see my lead specialist tomorrow and GP when I go home The cycle of care has begun 💜💜💜
Writing in my journal, making sense of what is happening, telling my story. Thoughts: I was so ill, why didn’t I know? What would have happened had each symptom been treated separately? Did it take me not knowing how sick I was to get my diagnosis? I tried so many things: getting on with it, resting, soaking tissues in water and salt and inhaling through my nose, doing exercises for my inner ear and inhaling eucalyptus. Now these things seem kind of silly.
Yellow Roses a Gift from Danni, John Fawkner Hospital.
Copyright Cathy Beesey, March 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.
This link to my memoir Contents and published chapters.
Stories Connecting Us 
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