Learning to live with an autoimmune disorder – A mosaic of my journal 

Cathy Beesey Founder Stories Connecting Us 

Part 1: Wegener Anca Vasculitis, A Rare Autoimmune Disorder 

Chapter 1: Diagnosis Day  

The link to my memoir Contents and published chapters is at the end of this post.

I share with you a mosaic of my journal from diagnosis day 9 February 2019 to remission 5 July 2019, as I begin to learn to live with Wegener Anca Vasculitis (now known as Granulomatosis with Polyangiitis), a rare autoimmune disorder. In this my memoir I use the words I wrote at the time, not remembering when: the shock had lessened, the fear and despair had dissipated and the moments of joy not as intoxicating. 

My journal begins with a Daily Caption: Day 1, Diagnosis Day, Saturday 9 February 2019. 

John Fawkner Hospital Coburg, 9 February 2019   

The day is much more of images and feelings than words. The soft walls with their lath and plaster, old fashioned windows, basin with a cabinet and mirror above, the power-points with labels decades old stating what they can be used for. I am comfortable, feeling safe in the history of John Fawkner Hospital and my first five years living in Fifth Avenue Brunswick, the street adjacent. I am not to know that what I will be told today, aged sixty-one, will change my life forever. 

I wake around 6.00am, a cool breeze, the window held up with a small piece of timber. Late yesterday I was moved to a private room from the bed next to the nurse’s station in a renovated section on this floor. Now, in this older hospital room, with no ensuite I walk to the bathroom. My short blonde hair tousled, in purple floral pyjamas, loved at first sight, then thought looked outrageous but were comfortable. Now I walk the corridors of the hospital looking like who knows, feeling the effect of the steroids I began taking yesterday: exhilaration, creativity, and energy. This is as it was when I took them mid-January, steroids returned my hearing and something more. I believed I could conquer anything as I talked with fondness and passion about steroids to anyone who would listen. 

Yesterday I took Prednisolone (steroids of twenty-five milligrams) one at 8.00am and one at 2.00pm. My body had been swamped with antibiotics administered intravenously, this hadn’t made a difference. The steroids began controlling my raging temperature, bringing it down, keeping it down. Last night Kelly my nurse of the last couple of days settled me into my private room and showed where I could find water, ice and food. She knows the steroids cause hunger and I have been told to drink lots of water. Kelly knows what is to come but it is not for her to tell. A hug as she leaves, ‘You can get through this.’ I gift her a yellow rose, one from my bunch of flowers, knowing Kelly loves flowers in her home. 

*

Dr Reynolds, my hospital specialist, a rheumatologist visits around 8.00am as he has each day. This morning smiling, eyes sparkling with warmth and an air of excitement, his frown gone. The words are fuzzy, he says something like, ‘We have diagnosed. You have vasculitis. This diagnosis is good.’ He has used the word vasculitis before, but I hadn’t understood, I ask, ‘What is vasculitis?’ ‘You will see other specialists today, they will explain.’ I message Stan my partner, waiting at home.  

Sitting on the bed a sense of calm and strength, wondering what today will bring, knowing I will be visited by specialists but not knowing who, when or why. Dr Max Carter an infectious disease specialist reiterates, ‘This isn’t something external that has come into your body. It is your body doing this to your body.’

As he leaves, I visualise us talking last Thursday as he sat next to my bed asking questions, ‘Has anything made a difference to how you felt?’ ‘Steroids.’ Dr Carter explained my immune system is destroying my healthy cells. I didn’t understand. I knew the immune system destroyed flu and cold cells, a good thing. I now understand my immune system is destroying my healthy cells, destroying me.

* 

Moving to the 1970s style orange vinyl hospital chair near the window, I squeeze the matching chair into the small space opposite. Dr Jonathon Andrews introduces himself, he is a nephrologist. I call him Jonathon; he will always be Jonathon. A slim build with dark curly hair, wearing a vest, jacket and pants and a brightly coloured tie. I’m trying to work out his fashion style. I stop myself. 

Sitting comfortably and quietly we talk. Jonathon has referred to the results of the many tests I have had and conferred with other specialists including Dr Luke Jones: Ears, Nose and Throat. I have Wegener Anca Vasculitis impacting my lungs, ears and kidneys. Dr Jonathon Andrews could do a kidney biopsy, but he is one hundred and twenty percent sure this is what it is. I can choose to have the biopsy, I won’t. I ask questions and explain the many symptoms knowing he’s worked me out. I hate it when people do this so easily, believing I am more complicated. Jonathon states, ‘It is a rare condition with one in a hundred thousand people being affected. If you were at the AFL Grand Final, you would be the only one with this condition.’ 

Dr Jonathon Andrews explains, ‘You will continue on a high dosage of steroids and tomorrow begin chemotherapy with one tablet and then two on Monday.’ These drugs will compromise my immune system from the moment I take the first chemotherapy tablet. I may lose my hair. I could develop bladder cancer; we won’t know for at least two years. I cry. Jonathon with confusion in his eyes, ‘Why are you crying?’ ‘I’m overwhelmed.’ ‘You should be happy as this condition is rare, difficult to diagnose and is treatable.’ Jonathon continues, ‘Steroids will make you feel manic.’ ‘No, they make me feel creative.’ ‘No manic,’ he says gently. ‘No creative. ‘They will make you manic,’ and I stop myself from saying creative yet again. Jonathon suggests I ask someone to check any financial and legal documents during this time.

Jonathon asks, ‘What do you do?’ ‘I write travel blogs.’ A wry smile with the question, ‘Where are you travelling next and when?’ ‘Italy in May.’ ‘Italy will be there in 2020, and Victoria is a great place to travel.’ As Jonathon does a physical check he inquires, ‘Are you married?’ ‘No, but I have a partner Stan, and he is forever.’ Jonathon looking confused spells, ‘FOUR’, I smile, ‘No FOR ever.’ Jonathon quietly leaves. 

Stan arrives, sits on the bed, I cannot move from my orange chair. He is sweet, concern only for me as he falls to his side and cries, ‘I am here for you forever,’ sits himself up and inquires, ‘Tell me.’ I share what I have learnt ending with, ‘We cannot travel overseas in May. My immune system will be compromised, and it is too risky.’ Not good news for a travel blogger with a love of Italy.  

*

Dr Thomas Lombardi, a lung specialist arrives wearing jeans with a light blue, well pressed shirt says, ‘Hi,’ and sits on the bed. He uses the words Wegener Anca Vasculitis spelling each word as Stan writes them on a small piece of paper. He asks about our lives and shares some of his story. 

Thomas explains that Jade, our eleven-year granddaughter living with Cystic Fibrosis will always have bugs and Jasmine three years old at day care will always have something or something brewing. ‘You need to take care of your lungs. You will be prone to colds and flu.’ He states gently but firmly, ‘Your family and friends have a duty of care. They must let you know of any illness and stay away when you are unwell. You can wear a mask but that may not be enough protection at the beginning.’ 

We talk, with time and space to ask questions. Dr Thomas Lombardi states, ‘Don’t go onto the Internet to learn more, it will take you into deep, dark places. You do not need this.’ He tells us he is always learning, learning more now in his sixties than he has learnt in his whole career, explaining medical research is extraordinary in what it can teach us. 

At the doorway Dr Lombardi looks back, ‘Medicine is an art and science. The art is that we have come together with you to diagnose, and the science will be the treatment that will save your life. This is to come.’ He leaves and I cry keeping my tissues of tears close, the ones from my time with Dr Reynolds, relief, with Jonathon, overwhelmed, with Stan, fear and now with Dr Lombardi, sadness. 

*

I worry for Stan as he worries for me. Stan’s skin is grey, dark circles under his eyes from lack of sleep and fear of not knowing and watching me so unwell for the last few months. A woman enters, I wonder who she is. She looks confused and uncomfortable, ‘I am here to take your meal order. Who is the patient?’ A moment of joy, relief. I don’t look sick. Stan restless, goes home to phone his family (my Gibson family), to update them. How heroic! I will send messages to my friends and family. I know I won’t be able to speak when I hear their voices, not wanting them to feel the pain and fear I have, and I see in Stan. 

Alone, I find my notebook and I write my daily caption Day 1, Diagnosis Day, Saturday 9 February 2019, continuing with, I have a rare overactive autoimmune disorder: Wegener Anca Vasculitis. A serious drug regime: three months, six months, lighter for two years, maybe forever. WTF! 

*

Feeling calm, composed, wanting to know more and how I want to take this journey thoughts and feelings jumble and tumble in my head and heart. I cannot believe the universe is taking such care. Thank you, Elizabeth Gilbert, author, for giving me the idea of big magic. It is the only explanation I have of today. These specialists and I were waiting for this moment. The timing is right. I feel so grateful. 

My condition is rare. I first wrote, this condition is rare, but it’s mine now. It’s rare because it includes my lungs, ears, and kidneys. More common autoimmune disorders are Multiple Sclerosis, Type 1 Diabetes and Rheumatoid Arthritis. It seems there is nothing common about my condition, but I now understand the cycle of tests, the treadmill I have been on. I have had numerous blood tests, urine tests, MRI (OMG!), facial X Ray, lung X Rays, lung scan, daily diabetes tests and constant temperature taking.   

This is something I’ve never wanted in my life, who would? But it’s here to challenge my very being. The drugs will impact on my rogue cells as well as my good ones. And it is my body doing this to my body. They don’t know what causes Wegener Anca Vasculitis. I don’t have something to blame. I fear I will blame myself. The steroids will increase my weight, change my body shape and my face will get rounded. I have an image of myself looking like the Michelin Man. How do I stop this? 

And alongside all of this I can’t stop moving to the positive knowing I am fortunate to have been diagnosed so soon, twelve days in hospital. If not, I would have got worse with body organs shutting down beginning with my lungs, ears and kidneys and then other organs leading to a painful death. 

I’m feeling an inner strength after the shock, but I know there will be bad days. I cannot begin to imagine what these will be like. I want to lean into my vulnerability and grow from this, grow deeply. The challenge will be: can I stay in this vulnerable place? I will need to change a habit of a lifetime, pushing myself through illness. Now I know I have Wegener Anca Vasculitis is this who I am.  

*

Calmly I make a list of what helped when I walked away from work one day never to return. 1. Exercise makes all the difference to how I feel, cope; 2. Staying socially connected; and 3. Psychologist and counselling.  And today I add: 4. Keeping strong boundaries; 5. Choose carefully who I am vulnerable with; 6. Continue with Cathy Travelling business; and 7. Be creative, do mosaics. 

And I think of the paperwork accumulating: doctor and specialist receipts, prescriptions, test results, first hospital stay, strewn on the desk at home and in the second drawer of my hospital room, an ugly jumbled mess. How do I manage the unmanageable of my life, paperwork? I know, plastic folders each with a label: HOSPITAL, SPECIALISTS, GP, TREATMENT, TESTS, PSYCHOLOGIST and OTHER. This is what I will do. Will it work?

Feeling in control of all of this and then: what happens when something goes wrong? When someone challenges me? When I forget to do something? Being limited by my perfectionism I want and need to keep faith in myself. Telling myself, ‘Be strong, live and don’t try to be perfect.’ 

On 14 January of this year, I wrote of my friend Penny’s decision to manage her cancer with natural therapies. I didn’t understand her choice and knew I wouldn’t make the same decision. Who’d have thought I would live by my writing so soon. No hesitation to take the path of modern medicine, trusting my specialists.

On 14 January I also wrote of Tony, Stan’s most trusted friend and his battle with cancer and how he dealt with it: dignity and generosity. I was inspired, wondering if I could ever be as brave and strong as Tony. Never realising this test was to come so soon. OMG, what will I learn from this? What will this mean? How can I grow? How can I live through this with dignity? 

Today I know I need to care for Stan and not do what I usually do, over organise our lives causing him stress. To plan times just for us to relax and enjoy being together in our home. I believe with all of my heart Stan, and I will grow stronger together. Stan arrives, I push my journal aside, ‘How did you go telling your family?’ ‘Fine.’ I feel he has been given strength and support from each family member in their own way. 

My thoughts have rambled from here to there to everywhere with tears falling, tissues filled with tears. I neatly wrap my tissues of tears in another tissue bringing a day of tears together. I am a Virgo, of course they are neatly wrapped; shaped like a heart as my heart breaks. I hand them to Stan to throw in the bin, finding it hard to release my image of so many tears. Stan gently returns them, and I take a photo. 

*

Dr Nigel Johnstone, heart specialist, casually walks in looking tired, leans against the basin explaining my form of vasculitis doesn’t affect my heart. Dr Reynolds, my hospital specialist, wants me to have a heart test: baseline data. This will happen on Monday. Stan and I talk of the specialists visiting and wonder if there will be more. 

Stan is being obsessive in following rules and caring what others think. Wouldn’t visit the hospital unless it was visiting hours until I got permission. The nurse couldn’t believe I asked. Reading the decades old label on the wall about personal use of power points he begins to change the plugs from where I plugged in my toothbrush and phone charger. With tension in my voice and thoughts of there are more important things I state, ‘Leave it.’  

*

I began reading Dare to Lead by Brené Brown, her latest book, on 13 January. I am inspired and moved to create a gratitude each day, doing this each night since being in hospital. Today it is to Dr Samuel Reynolds, my hospital specialist for his knowledge, compassion, and perseverance as he organised tests and brought together experts in different fields to diagnose the condition that was taking my life. You are my hero. 

Before going to bed I clean my teeth, look in the mirror and wonder, ‘Who am I?’ I cannot see myself clearly.  

*

In bed my mind swirls. My diagnosis of Wegener Anca Vasculitis is like an opera. The magical way a team of extraordinary specialists come together in one place on one day. I am the female lead in a well scripted, choreographed production. I see myself shrouded in white with movement around and against me as my story unfolds with each specialist demonstrating humanity, knowledge, compassion, and respect, sharing their personality and the power of modern medicine, contributing to my story, on this catastrophic day.   

Act One: A hospital room with specialists coming and going, we talk. Time in-between to begin to understand, find the questions to fill my need to know and to write in my journal. 

Act Two: Interaction between specialists. I know there have been phone calls, they all seem to know what I have been told and where we are in the story line. What makes this group of specialists work so well together? When and how did they communicate with each other? This is the part I don’t see, hidden. 

Act Three: Alone in my hospital room, I am the female lead. As with many operas it is the female lead who dies, never quickly or painlessly. I am wanting to live, consumed with fear. I do not know when my story will end, as none of us do, but I know I will continue to perform and when I fall, I will pick myself up and be ridiculously optimistic that I will live.

Somewhere in the universe, this my diagnosis day, was meant to be. These specialists, Stan and I together. I feel so grateful, so very grateful. 

Diagnosis Day, Cathy Beesey April 2019

Copyright Cathy Beesey, February 2025. All rights reserved; this intellectual property belongs solely to Cathy Beesey.

Note: the names of specialists have been changed, not wanting to write them from my story, I do this with respect of their privacy and with gratitude to each of them for their place in this my journey.  

I post this today on the sixth anniversary of being diagnosed with this rare autoimmune disorder. And now draft five …

As I conclude my story, fingers dancing on the keyboard I write: I choose to live and love with dignity, learn with curiosity and contribute with passion: writing, volunteering, Stories Connecting Us. I choose to not let this autoimmune disorder define me, my life. It has taken six long years for this clarity to reveal itself. 

My memoir continues to be refined as I receive feedback, re-read my story for different purposes and learn more of the craft of writing.

This links is to my memoir Contents and published chapters.

Grateful – Contents