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

Cathy Beesey Founder Stories Connecting Us

Part 3: On A Treadmill

Chapter 11: Within Dark, Thick Walls

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

Reminding myself, there is light at the end of this darkness. The image of this my journey returns: the dark thick walls of the tower of the Cathedral of Monreale, Sicily. I haven’t thought of or connected to this image for what seems like so long, although it’s only weeks. I have been so deep within these thick dark walls not able to see the homes, produce growing below and Tyrrhenian Sea in the distance. The light seems brighter, although I am still confined.  

Cathedral of Monreale, Sicily

Daily Caption: Many moments of fear and despair surrounded by gratitude, Thursday 11 April. A week of tests, appointments to come, so much happening to my body, my emotions. Exhaustion at how I live my life on this treadmill. It is only when I am with others I forget. The days leading to see Dr Jonathon Andrews are the hardest, crying those deep sobs for myself, there are no gentle tears. I give over to my fear and despair when I need to, do practical things when I need to, and write because I need to. A time of peacefulness, sitting outside in the sun, water feature gently trickling, marvelling at the blue of the sky with white wispy clouds, our neighbour’s terracotta roof, reminding me of the calmness as I sat on the balcony in Daroca, Spain. I now have more questions for Dr Jonathon Andrews: What can I expect? Will the side effects and symptoms continue to intensify? Will they plateau? Will they decrease?

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Daily Caption: Monthly visit to Doctor Jonathon Andrews, Friday 12 April. This moment, I am as calm as I can be, anticipating results. Stan is frantically cleaning the kitchen, then noticing I am quiet, ‘Are you okay?’ ‘I need quiet, please have a shower.’ ‘I won’t be long.’ I notice he doesn’t finish cleaning. It is quiet as I wait. 

In reception, waiting to see Jonathon I observe white fluffy clouds move slowly as I say over and over, ‘Give me the serenity to know the things I cannot change.’ Thirsty, always thirsty I am drinking water when Jonathon  calls, ‘Beesey.’ I drop my water bottle, the magazine Stan is reading seems to leap toward the ceiling, we scramble and finally walk toward Jonathon as he stands in the corridor leading to his office. 

The news is positive: the treatment continues to work on Wegener Anca Vasculitis, my kidneys are at a good level, much lower than they were. The additional treatments are working on the side effects of the steroids and chemotherapy with my red blood cell count normal and my salt level good. I have lost four kilograms from two days after diagnosis, this is muscle mass. The pain in my hip is a rare side effect of the steroids. Jonathon wants to check my bone density results, they are not there. I know them: what is expected of a woman of my age, no osteoporosis. I am to contact Jonathon if my hip gets worse. 

Jonathon acknowledges the treatment is harsh with side effects extensive, I appreciate his words. Maybe at the three month visit the treatment can be changed or modified meaning less side effects, it is too early to know. I do not care, I want to do what has to be done for the long term. Stan asks Jonathon how many people he treats for this condition, ‘Six.’ Before leaving I ask Jonathon to repeat the results. At the lift gentle tears roll down my cheeks. In the car alone, Stan at the pharmacy, I cry my cry, deep harsh sobs.  

At last home: Stan opens the double glass doors to the deck, water trickling, the water feature is on, we hold each other, more tears. Thinking Stan doesn’t like it when I cry, I say, ‘These are tears of joy. It’s also the steroids but mostly my tears are for the love and care I have been given.’ Stan makes coffee, my barista, I send messages to friends Marg, Danni and Cheryl, and my cousin Linda. Each of these extraordinary people in my life sent a message this morning, knowing the time of my appointment they will be waiting. Their responses bring more tears: I smile, feel strong and loved. 

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Month of May: Looming, my appointment with Dr Jonathon Andrews on Friday. Notes – feeling a chill in my left arm, back and neck, like ice through my veins, beginning on Monday – hot flushes, more often at night or when I exert myself, occasional night sweats – two types of red dots appeared about two weeks ago – pain in my hip when I stand still and sometimes when I move in bed or when sitting, it is okay to walk, slight pain in my spine with occasional clicking – more fatigued, struggling to move around our home, legs heavier at night  – blood in my right nostril most days – more coughing and movement in my lungs – more days with no new symptoms – have had flu and B12 injection. Prescriptions required: sleeping tablets and if continuing the same treatment, no others. 

Planning the days before appointments, I do what I want and need to do. I only want to see Danni and Marg, not over doing it, changing a habit of a lifetime. Monday blood and urine tests, Tuesday curtains measured for our indoor living area and appointment with psychologist Ava Davis, Wednesday afternoon Danni, Thursday a quiet day with Marg visiting and Friday THE DAY. My mantra is simple: I am grateful to be alive, I will live. This with my other affirmations and quotes from Danni, Marg and her daughter Elly are placed on the dining table, viewing them as I write and move from inside to outside. Remembering Ava’s words, your appointments are bittersweet. I am calmer this time and for the first time looking forward to seeing Jonathon, getting the next piece of this mosaic, my story. Daily Caption: Discipline and determination before I visit Doctor Jonathon Andrews, Thursday 9 May.  

My appointment with Jonathon, mostly sweet, improvement in results. My body is so frail the chemotherapy stopped, and I am on new medication to keep my immune system compromised, Mycophenolate Mofetil, it won’t be as harsh. This medication is to stop rejection of organs after transplants. I ask myself, ‘How did they work out this drug could treat Wegener Anca Vasculitis?’ The wonders of modern medicine. I need to take a tablet morning and night. Wanting a fact sheet for my new medication from the pharmacy, Stan asks, ‘Are you sure you need it?’ In my purple folder labelled, treatment, I have a fact sheet for all my medications. The side effects of this new treatment and chemotherapy seem no different. I still don’t know, what is a symptom, and what is a side effect. Steroids reduced by half a tablet, 12.5% reduction, 25 milligrams daily and reduce another half tablet the following month. 

And there is more during this appointment: my lungs are weak from steroids. The red dots on my skin and blood in my nose are because my skin is fragile, from steroids. My love of steroids gone. Jonathon explains, ‘As the steroids continue to be decreased the fatty deposits will lessen.’ ‘My wrinkles will come back.’ Jonathon, ‘I like wrinkles.’ I agree, my wrinkles are who I am. The Lance Armstrong Injection is managing my red blood cell count, one today with one more and that should be it. Kidneys doing well, in the normal range. Sharing my current life with Jonathon: doing more, having people to our home in the way we use to and writing a journal, ‘Don’t read your journal for a few months, because of the steroids.’  Jonathon asks if I have questions. ‘What do I do about exercise?’ ‘Maybe walking more, no weights, possibly an exercise bike. I will see you in two months.’ 

As we leave Jonathon’s office, I thank him, tears fall, and Stan thanks him. Waiting at the lift I put on my purple coat and matching Italian leather gloves, more tears, tears of relief. New medication to purchase at the pharmacy, this time I go with Stan. I stay in the lounge area as I find the cafe and pharmacy closed in and full of germs. Sending a short message to my most trusted. 

Positive outcome, waiting for prescriptions to be filled 

Will let you know more when we get home 

💜🙏💜

Stan buys a sausage roll and a pie for him, to celebrate. Oh, how things have changed. We phone Ray, Stan’s father, knowing he will be waiting. We don’t tell most people what time the appointment is, to give us space and time to share with them what we want and when. Talking with Ray, he says as he always does, ‘I think of you every day,’ with tears in his voice, adding, ‘More than once a day.’ Tears falling Stan takes the phone. Gentle tears of relief and my love for Ray, like a father. During the afternoon I send messages those I keep close. 

Hi, positive appointment today with specialist, chemotherapy tablet replaced with less invasive tablet, steroid dosage reduced slightly. 

Symptoms from Vasculitis continue and side effects from treatment. 

My next appointment is in two months. Grateful 💜

Smiling at simple things: rain, grey sky. Important things: our granddaughter Tahlia having success with her project and celebrating halfway through her course at RMIT, Kelsey having a job interview in Melbourne. Stan being sweet with a cuddle, shocked as my neck clicks.

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Daily Caption: Blood test for Doctor Reynols’ appointment next Monday, Monday 27 May. Here I go again. Needing to remember how I cope with my appointments with Jonathon, dealing with them that bit differently and better each time. My new challenge, fearing the damage the steroids are causing my bones: fragility, pain in my hip and clicking when I move. The fear of my appointment with Dr Reynolds brought into focus with a reminder phone call. 

My mantra, affirmations and quotes are in the lounge tonight, they will wait and take me through my morning routine as I prepare for my appointment with Dr Reynolds. Notes printed, knowing my body so well I can answer any question he may ask. My gift of gratitude to Dr Reynolds, beautifully wrapped by Danni, is in my bag. I have done what I can do. 

Daily Caption: Appointment with Doctor Reynolds and a gift of gratitude, a book of photographs of Melbourne, Monday 3 June. Waiting, knowing I cannot change the results of the blood test or predict the outcome, there is no certainty. Wanting to listen to Dr Reynolds with serenity, strength, and dignity, this will get me through whatever is to be. Dr Reynolds welcomes, ‘You look better, I am pleased to see you.’ He explains that the clicking is to do with the ligaments caused by a lack of physical movement, especially for someone who had been so active. It is time to do more: walking and light exercise. Checking my hands for signs of osteoarthritis, they are okay. Prescribing medication to take once a week, Actonel. It is a preventative speeding up cell renewal to assist with the impact of the high dosage steroids. Prescribing glucosamine sulphate daily, a complementary medicine to try for three months and if I haven’t noticed a difference to stop. ‘Don’t get depressed,’ today his approach seems more holistic. Dr Reynolds smiling, ‘Is there anything else? I know you will tell me when things are not right.’ I give my gift of gratitude to Dr Reynolds with this response, ‘My gift is to see you and to see you getting better. I do not need anything else.’ 

Dear Dr Reynolds 

Thank you for my life, your knowledge and compassion and sharing your love of Melbourne. 

Cathy Beesey 

Gentle tears as I put on my light blue coat, leather gloves, scarf and hat. Alone in the car, crying those harsh sobs. This time they are sobs of gratitude and relief, not despair.  

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Dreading my appointment with Dr Jonathon Andrews, fearing the vasculitis is taking over my body once again. Daily Caption: Anxiousness builds, Thursday 4 July. Two days before my appointment, a text, my blood test hasn’t been processed due to a problem with labelling. I will have to give more blood early tomorrow and find out if the results will be with Jonathon in time for my appointment. Dam! Frustrated more than angry, I don’t want to reschedule my appointment, waiting longer. Robyn, after taking blood, puts an urgent on the blood test. I must do another urine test. Doing this at home, Stan takes it to the medical centre before the 9.30am deadline. Dealing with this is just another thing that now defines my life: tests and appointments, my treadmill. I am as calm as I always am in a crisis, on the outside, and anxious on the inside, stomach clenching. 

Notes for Dr Jonathon Andrews, 5 July: symptoms, side effects and questions. What is the chance of remission? How is the blood stream involved in this condition and cells? How long before diagnosis was this happening to my body? As I travel to my appointment I continue to say, ‘Give me the serenity to know the things I cannot change.’ Definition of serenity: the state of being calm, peaceful, and untroubled. I can find calmness, appear peaceful but untroubled I am not. Not as nervous this time, repetition making each visit easier. I have prepared myself for bad news while feeling positive about who I am and how I am dealing with all of this: how confusing.

There were times when I could run on a treadmill, times when I thought I could walk on one and many times I felt the treadmill wasn’t moving. Thank you, Jonathon, for the words, ‘Go live your life.’ I know my life, the one I had will return at a different level and in a different way but for now it is what it is and I’m okay; grateful to be on this treadmill I’m on. 

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