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

Cathy Beesey Founder Stories Connecting Us

Part 3: On A Treadmill

Chapter 10: Give Me the Serenity

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

My morning routines are deliberate, keeping calm, being in a space I need to be as I come to terms with the new reality of my life. Always anticipating the next specialist and doctors’ appointments, with fear and anxiety, never knowing what I will find out. Is this who I am, have become? How long will I be on this treadmill? My greatest fear: no improvement, going backward. How will I cope with these appointments? The body I have been so proud of, taken care of and my pride in having a strong constitution gone. My body has deserted me, taking much more with it. 

Serenity Prayer 

God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference

Reinhold Niebuhr 1951

Give me the serenity to know the things I cannot change 

Cathy Beesey 2019 

Stan and I at our large outdoor table, soft blue tablecloth, deep blue glass tea light candle holders and a bowl of cherries. I write my list of symptoms and side-effects preparing for my first appointment with Dr Jonathon Andrews, a nephrologist, also specialising in Wegener Anca Vasculitis. He is the specialist I will see most often. On a large yellow post it note: Appointment Friday 15 February, I read to Stan, ‘- thirsty – ringing in ears continues – no high temperature with daily readings morning and night – fluid around my ankles and lower legs – a tight feeling in and around my lungs. ‘Stan, have I forgotten anything?’ ‘You need to add sleep, I worry you aren’t getting enough.’ I’m okay with not sleeping, enjoying finding my way through long early mornings, I add sleep to the list. 

Anticipating my first visit with Dr Jonathon Andrews in his rooms at John Fawkner Hospital, what do I want to tell him? I am grateful, overwhelmed, stressed taking so many drugs. I am confused: identifying the impact of the symptoms of Wegener Anca Vasculitis and the side-effects of the medication. I may tell him I understand enough about this condition from diagnosis day and at this stage I’m not doing more research. I might say I want him to ask questions to help me know what to notice, worry about and when to relax. I might add I am doing what I do when I travel: I write, take photos, and learn as much as I can; this is how I am responding to this the most significant journey of my life. I don’t tell Dr Jonathon Andrews any of this.

Daily Caption: Regular appointments begin, Friday 15 February. My appointment with Dr Jonathon Andrews getting closer, stress increasing, breathing shallow, I don’t know how else to describe it. I know what happens to Stan when he is anxious, at least I think I do, he freezes. I know what it is like to do this. The anxiety today is one of fight – fight for my life, do everything I can. ‘Stan, I’m stressed and don’t want to be running late.’ ‘Okay.’ Stan gets a text and responds. It’s like he can’t move from the chair and then, ‘I have some pottering to do.’ ‘Please shower and then potter.’ He wipes the kitchen benches, black granite sparkling. Sitting on my black leather wellness couch in our indoor living area anxiety rising, body trembling I do nothing, frozen in time. Stan now showered is with me, hoping his anxiety is lessening and he understands my fear. Deep breathes, tremors through my body, drinking iced water and wondering how to fill in the half hour before we leave. 

First appointment over, results positive, fearing my reaction when and if they aren’t. Scared to get too excited, push myself too hard but mostly scared I will start pretending this is, was no big deal and in doing so push people away, missing an opportunity to grow and strengthen my relationships. It seems there are tablets for each of my side effects. A script for sleeping tablets and if I need them in the future tablets for fluid retention. Calm although my body shakes, more rested than I can remember. Knowing and feeling my Wegener Anca Vasculitis journey has a long way to go I write a message sending it to friends and family.

I visited my lead specialist this morning and results are heading in the right direction 💜 

He confirmed that this extensive treatment will take three months and during that time there will be uncertainty – my immune system compromised and the impact of the medication and how my body will respond 

This is closely monitored and prevention with appropriate medication as needed

My specialist is extraordinary with his knowledge, honesty and compassion 

I’m doing okay 💜💜💜

There are no more words, I smile. I wonder, how much do I deal with? Will I know when to see a doctor? Will I know when to go to hospital? I don’t believe I am unique about all of this. 

*

Next doctor, same day, my GP Dr Nico Rossi is compassionate, caring and listens. Thanking him for his part in my story, that I am alive, and my gratitude; I am more grateful than he could ever know. My GP of thirty years is retiring and with gratitude to Nico for the tests he organised and perception of my distress, he was the one to advise I attend hospital; I want him to be my ongoing GP and to know the most important things about me at this time and from my past. We talk of our granddaughter Jade living with Cystic Fibrosis and how I want to see her but don’t want to risk her or my health, ‘What do you think?’ Andrew will research. My granddaughter Jasmine is at daycare and my fear of a cold is always there. My mother and sister had dementia and my relief at the outcome of the MRI, my brain isn’t extraordinary. 

Continuing with practical things on my large yellow post it note: how do I get financial support? I know I cannot work; my travel blog business isn’t making money, and the cost of drugs is expensive. ‘Contact Centrelink to find out what you need to do and let me know any forms I need to complete.’ I want to organise counselling and start soon, to take care of my psychological health alongside my physical. A Mental Health Plan is created identifying Ava Davis, my psychologist as I transitioned from full time work. 

Morning Ava,  

A new set of challenges for me. Dr Nico Rossi from my medical centre sent through information for a new mental health plan.  

I was diagnosed Saturday February 9 with a rare autoimmune disorder and began an extensive drug treatment straight away. My world turned upside down. 

Is it possible to organise a time this coming week or early next week for an appointment?  

Thank you 

Cathy 

*

First appointment with Ava Davis psychologist is today, physically vulnerable, body trembling. Stan is doing things around our home; I am ready to go and can’t get him to stop. I don’t hear him, or he doesn’t say, ‘You are half an hour early.’ In the car, not saying anything, not looking at the clock, we get every green light and are there at three minutes to two. ‘Drop me in the illegal spot and I will go in.’ ‘Your appointment isn’t until two thirty.’ I don’t know what to make of this, ‘Park the car legally then.’ Stan is worried about me sitting in the heat of the car, ‘I will wait in reception.’ I have always liked this part, sitting quietly in the cool, stopping, waiting for Ava to walk down the steps. 

Comfortable with Ava asking gentle questions wanting to learn about the condition from me, she has done some research. ‘My body has let me down Ava how grateful I am to the specialists: their knowledge, humanity and wisdom. Ava suggests I make a list of what Dr Jonathon Andrews has said that has given strength, confidence. She calls it, ‘Jonathon’s Words,’ I write in my head Jonathon’s Wisdom then Specialists Words of Wisdom and Inspiration. 

Sharing with Ava my overwhelming gratitude to Stan and the unconditional love I have felt from his family, ‘I had thought they cared because I made Stan happy. It is much more.’ The love from my friends Marg and Danni and my cousin Linda, ‘I wouldn’t have thought I deserved all of this.’ And more, ‘I haven’t told my brother Bill. I asked my niece and nephew, and they haven’t done it. I can’t do it. I will cry, be too emotional when I hear his voice.’ There is no judgement. 

Relief, ‘I had an MRI, and I do not have early onset dementia.’ Sharing my story of steroids: from loving them with their manic, creative side-effects, beginning to fear them and what they are doing to my mind. Ava, ‘Ask Dr Andrews for something to read on the impact of steroids and feeling manic.’ At one point and many times throughout my sessions with Ava she says, ‘Breathe.’  

Sharing with Ava, I write, a way of filling my days, beginning my journal on diagnosis day and writing every day. ‘Don’t re-read your journal yet. Give it a few months.’ Ava asks what I want from her: future appointments. I want to visit monthly and to have the option of more if needed, ‘Can you find something reliable to read on taking steroids and manic behaviour?’ 

Leaving, Ava offers to assist me down the steps, ‘No thanks, I have to go the toilet, and I will be fine.’ ‘I will be here if you need me.’ Returning to Ava, I ask her to walk down the steps in front of me, not wanting to make all of this any worse, my dread of falling, I won’t let pride get in the way. Reflecting: waiting for Stan as I sit in the cool, knowing I must take care of myself, not wanting another thing to add to my distress. Remembering: being annoyed with stubbornness in the elderly when they must do it all themselves, won’t use a walking frame, won’t take help. Didn’t think I’d be dealing with this so soon. I give gratitude to Ava for reminding me to breathe and not judging. My appointments with Ava, our discussions intertwine throughout my story. 

At home I search my journal for the words of Drs’ Reynolds and Andrews. I type into a new file, print and Stan laminates. The words sit waiting for the hard times.

Specialists’ Words of Wisdom and Inspiration 

I thank Dr Reynolds for saving my life, he says, ‘You have been diagnosed, you have the best team of specialists you could want around you, there is treatment, the prognosis is good.’ 

Dr Jonathon Andrews asks, ‘Are you married?’ ‘No, but I have a partner Stan, and he is forever.’ 

Dr Jonathon Andrews, ‘What do you do?’ ‘I write travel blogs.’ Jonathon, ‘Where are you travelling next and when?’ ‘Italy in May.’ Jonathon shares, ‘Victoria is a great place to travel.’ 

Jonathon says before I leave hospital, ‘You are young, you are healthy, go live your life.’

*

Daily Caption: I will ask, Sunday 24 February.  

Morning Danni, you mentioned my next great challenge was my fortnightly visits with my specialist and you were right 

I cut you off with my one and only strategy and that is one to use when I get home

They are such important visits with lots blurring in my mind  

I’d appreciate your ideas and to talk them through

It won’t be solved quickly or easily but I know it will get easier 

Not sure what your afternoon is like or tomorrow 

I’m home 💜💜💜

During our recent time together explaining to and showing Danni my calendars, shaded in purple showing treatment, appointments, and results. An arrow pointing up to represent improvement and I am anticipating I can draw an arrow sideways for no change and down for when results are negative, showing the big picture over time.  

Danni will visit tomorrow: relief, gratitude. She sends a message with ideas to get me through, to begin our conversation. Reading Danni’s message, she knows me so well, I am validated. Her suggestions: 1. A positive spin, focus on the science and how it will take you on the path to good health. Loving the idea of medicine being an art and a science, the art of diagnosis, the science keeping me alive. 2. Letting go of outcomes, focusing on the purpose of the appointments. She finishes with, ‘You are dealing with so much, be kind to yourself. You are doing just fine.’ Danni and I talk and talk, back and forward, around and around making sense of the strategies she had sent. I share, ‘Dr Jonathon Andrews talks of what may come, the next side effects I could experience, what I need to notice, but still I am shocked when something new happens to my body, although not surprised.’ 

*

Daily Caption: Doctor Reynolds knowledge, humanity and compassion, Thursday 28 February. Preparing for what it will be like to see Dr Reynolds, rheumatologist: saying hello, controlling my emotions, what to say about my health, and knowing he will ask questions and check my breathing. This is what he did each morning when I was in hospital. And then one day he left to weave his magic finding the specialists, bringing them together, surrounding me, saving my life. I move to imagining this appointment, I cannot, I can only wait and see. I do want to introduce Stan. My Dr Reynolds file, a purple plastic folder titled specialists, sits in my handbag, I know where his rooms are located, I am ready. 

Reaching 37 degrees Celsius today and no air conditioning in the Ford Capri, yesterday I began planning: maybe we could get a taxi, no, filled with germs. This morning working it all out: arrive early, cool down, leave cooling on at home for when we return. We never do this but today we will, taking care of both of us. Taking blood sugar reading my hands shake, not getting enough blood, the machine closes. Third time, yes! Pinpricks on three fingers of my left hand. Blood sugar low. Is it too low? OMG! I’m okay.

Waiting to see Dr Reynolds, body shaking, mind calm. Magazines on the table, something for everyone. Collective with stories of inspirational businesspeople profiles Brené Brown’s book Dare to Lead. She is with me again. Hands shaking, vision blurred I cannot read the fine print, reading quotes and headings only. Stan reading a magazine on sustainability, both of us choosing not to read the ones with celebrities.

My first sentences to Dr Reynolds are ready and that is all, ‘Hello Dr Reynolds. Thank you so much. I am grateful. This is my partner, Stan.’ I begin, ‘Hello Dr Reynolds,’ before I can say more, he responds, ‘It is so good to see you.’ Dr Reynolds reiterates, ‘We have a diagnosis, there is treatment.’ Adding, ‘The team of specialists and blood tests showed us what it wasn’t, leading us to what it was.’ 

I’m not clear on the words said, emotions swirling, I cannot remember the order, it doesn’t matter. Dr Reynolds explains and engages with us. The steroids, their strength will attack the Vasculitis, a good thing, and impact on my bones, a not so good thing. Steroids can cause osteoporosis. Dr Reynolds can give tablets for my bones, explaining, ‘Don’t be surprised by anything that may happen to your body.’ ‘I still have ringing in my ears and feel like I am breathing from the top of my lungs. When will these symptoms go?’ Dr Reynolds prints a fact sheet outlining the symptoms and treatment for Granulomatosis with Polyangiitis, no longer known as Wegener Anca Vasculitis. This is when I fully realise the initial treatment is for six months. Other times I have been fixed, symptoms leaving quickly, beginning to understand this won’t happen this time. 

I’m not sure how the conversation moves to Dr Reynolds sharing his love of Melbourne. His favourite place in the world is Australia and he especially loves Melbourne, the many quiet and interesting places to explore, ‘If you love the CBD explore the lanes, if you love the beach visit Williamstown, if you love the mountains there are many. We have everything you could want. I don’t need to go anywhere else.’  

An appointment in three months, a blood test a week before. Wanting to say I can’t thank you enough, all I say is, ‘Thank you.’ I could cry, I don’t, there will be time enough when I get home. In my meticulous preparation I had forgotten tissues, imagining more tissues of tears. Tissues waiting at reception, on Dr Reynolds’ desk, they still wait. Gratitude: To Doctor James Reynolds for his knowledge, humanity, honesty, and stories of his love for Melbourne. 

*

Daily Caption: Doctor Jonathon Andrews good news, clear and scary expectations of what may come, Friday 1 March. My appointments with Jonathon always around 10.00am, wanting to get them over with. Appointments always covering the same topics, never following the same order. My list now typed and printed: sharing symptoms and side effects although mostly I don’t know what, is what. Dr Jonathon Andrews: checking my blood pressure and breathing, giving results from blood and urine tests, most importantly explaining what is to come, what I need to know, not giving unrealistic hope, and next steps for treatment. Stan and I asking questions throughout and talking of things that have nothing to do with my health: stories often engaging and joyful.

At some point Stan asks about results, ‘Good and heading in the right direction.’ Trying to work out how long I have been on treatment, I cannot do it. Knowing the date when I was diagnosed, knowing I started full treatment two days later we decide on around three weeks. My steroid intake reduced to one and a half tablets a day: 37.5 milligrams from 50. Cut down my sugar intake, continue monitoring sugar levels and see GP Dr Nico Rossi with the slightest concern. The most important thing on my list was wanting to understand the impact of the steroids on my mind. Suddenly this is the least of my problems: steroids will decrease my muscle tone, impact on bone density and I will put on weight with fatty deposits in my face and body. Confirming it will be six months of intensive treatment and then … ‘I will see you in two weeks.’ Gratitude: To Dr Jonathon Andrews for providing the information and advice I need until my next appointment. 

Home: sitting in a black leather armchair, not my wellness couch, emotions, mostly fear flying at high speed around and within. Feeling Stan’s emotions and actions caught up in this, my tornado. Terrified, confused, shaking, there is no quiet, no peace, no serenity. What I want to write is too hard. Craving calm, drinking iced water, sitting quietly with thoughts and emotions rushing through my mind and heart. 

My lasting, confusing impression of my appointment with Dr Jonathon Andrews is how do I change a habit of a lifetime. How do I stop self-diagnosing? The complexity of what is happening to my body, new and raw. I cannot interpret the impact of the steroids, chemotherapy, preventatives, and my overactive immune system and the impact of each of these on my body. So many unknowns. How do I move to noticing and how do I know when to visit doctors, specialists? I need to trust, knowing these doctors will do what they need to. Giving this over to someone else, explaining what is going on with my body not why. I MUST DO THIS no matter the vulnerability.  

It is the calm after the storm, wake early around 4.00am: reading, watching Ted Talks, pottering, I don’t write. Daily Caption: Grateful to be alive with Stan, Saturday 2 March.

*

Appointment with Dr Nico Rossi, he says ever so gently, ‘The shock and complexity with everything so new is like a full-time job. As time goes by your life and the things you love and want to do will come back.’ Overwhelmed, crying because of my physical frailty, ‘I kept myself so healthy and now …’ Nico explaining, ‘You are in a much better place than others who are not so healthy. You are not having to deal with the complexity of other conditions and medications.’ One day I will appreciate I looked after myself, it was worth it, but not today. We decide I will see Nico in four weeks and before if needed, decreasing some of the anxiety of my many appointments. 

*

Daily Caption: Blood and urine tests, Wednesday 13 March. More relaxed today, knowing more. Remembering: first blood test at my local medical centre, knowing there will be many more to come. My body trembled as I lie on the bed to have blood taken. Robyn reassuring with gentle words, holding my arm, ‘I can take blood from anyone.’ Didn’t know I had to give a urine sample and how to do it, embarrassed. How can I be sixty-one and not know this? Robyn gently explains what to do. 

Another reality hit! My appointment with Dr Jonathon Andrews, I didn’t give enough urine, they couldn’t do all the tests. On my mind always, what if I stuff up? Knowing I will be hard on myself, blame myself. Trying not to do this but conflicted with how critical my tests are especially at this stage. I now do the urine test at home, less stress, Robyn explaining, ‘It is good for your wellbeing to be as calm as possible.’ Picturing my blood sample moving through space, out of my control, results travelling to Dr Jonathon Andrews so he can weave his magic. It is gone, I cannot change the outcome. 

*

Daily Caption: Specialist visit Dr Jonathon Andrews, Friday 15 March. My morning is long, showering early, wanting to make sure I am as calm as I can be. Knowing Stan will be stressed, why wouldn’t he. Marg my friend of forty years has sent a message with her words of comfort, knowing the stress I will be feeling. She will be worried and wondering, I will be in her thoughts until I contact her with the outcome of my appointment. 

Danni sends messages knowing this is the hardest thing I do. She sends an app with meditations making me smile, thinking no way. Danni also sends: God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. Is this the title of a book? I read it to myself over and over. Message from Danni: for me it is the universe, not God. Universe or God neither for me. I say, ‘Grant me the serenity to accept the things I cannot change,’ realising it is the word ‘me’ that is the important one. Driving to the appointment, repeating my affirmation slowly and quietly. We are early, waiting, I say over and over, ‘Give me the serenity to know the things I cannot change.’ Realising I have changed the word from grant to give as only I can give this to myself.   

My appointment: treatment beginning to work on Wegener Anca Vasculitis, this is very good news. Relief, I sense Stan relax ever so slightly. As always, I cannot remember the order the conversation takes but I know where my health is today, and my future health is in Jonathon’s hands. It is the blood and urine results, my symptoms and side-effects and Jonathon’s knowledge creating this part of my story. 

Other results, my red blood cell count is low, Stan adding, ‘Cathy is so fatigued.’ Jonathon deciding to give injections, one a month for at least two months. He calls it the Lance Armstrong drug, one of the many he took to win bike races. It would cost $500 per injection if not government subsidised. My salt is low, Jonathon asking, ‘Are you the kind of people that don’t cook with salt?’ Stan indignant, ‘Yes of course I do. I do all the cooking.’ And now to steroids. Jonathon explaining that as the dosage decreases the fatty deposits will decrease with my face returning to how it was. Telling us John F Kennedy, thought to be good looking was on low dosage steroids his whole life. I add, ‘My wrinkles are gone, that’s good.’ I wonder how I find something positive when I can hardly look at myself in the mirror. Jonathon, ‘I will see you in a month.’  

Stan and I walk to John Fawkner Hospital Pharmacy holding hands, I cannot walk alone although today there is much more to the way we hold hands. Medication: stronger nausea tablets and the injection will be ordered, letting us know when it has arrived. My heart is full of relief and happiness, not total happiness as I struggle to walk, knowing this journey is not over, although alongside this, a moment of joy.

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

This is the link to my memoir Contents and published chapters. 

Grateful – Contents