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

Chapter 9: It Is What It Is

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

Beginning the month of May 2019: no new side effects. The ones I know come and go in intensity.

Confused about time I print monthly calendars shading the edges and important dates in purple: appointments with Dr’s Jonathon Andrews and Reynolds, number of weeks and months since diagnosis and the beginning of and changes to treatment. Toward the end of each month I create a new calendar, not wanting to see too far into the future.

Month of May 2019 

Impressions from my daily recordings, months of May to July: significant change to treatment, more days I write no new side effects. 

May: Three months since diagnosis day my physical frailty continuing, increasing. Knowing some of the side effects could stay forever. Today worrying about cancer. On the day of diagnosis Dr Jonathon Andrews explained that a side effect of the treatment could be bladder cancer, and this will be tested in two years; way into the future, I cannot stop my thoughts drifting there.  

New side-effect: a chill through my body, a coldness that is deep, especially in my left arm and back. Cold within, like ice moving through my veins. Weird, it has been about a week, and I hadn’t recorded this in my journal.

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Daily Caption: Appointment with Dr Jonathon Andrews, mainly sweet, some bitter, 10 May. Results of blood and urine tests show improvement. Jonathon is concerned with the frailness of my body: steroids reduced; the chemotherapy tablets replaced with a new immune suppressant. I imagine it will take time for changes, not knowing how long the side effects from chemotherapy will continue and at what intensity. Will there be new side effects? Will symptoms of this autoimmune disorder return? I will wait and notice dealing with them as they happen if they happen. A week later with no chemotherapy tablets I am still physically fragile, I am used to this. There is a difference in a way I can’t explain. 

Another day: I don’t feel as fatigued, my head lighter, as though I can get up and walk easily, although I can’t. Maybe I am stronger in myself and moving more confidently, I hope. Is it the change in medication? Who knows? Dr Jonathon Andrews, not me. 

Fatty deposits move in my face and neck the way they did after I had been on steroids for around five weeks. Are the side effects lessening? The decreased dose of steroids causing my thoughts to come not as quickly or as clearly: sometimes I don’t finish sentences, ask for something to be repeated or I’m unclear in what to say. This is how my mind felt before diagnosis, the months before. 

24 May: As I sit, mostly sitting thoughts of my life swirl, so hard to keep going, I despair. Followed by being ridiculously optimistic that one day I will return to the gym, run on the treadmill with defined muscles, strength returned. Tonight, finding it hard to imagine walking alone on the street let alone running on a treadmill: tired, sad, deflated. I read 30% of people die either from vasculitis or from the treatment to manage it. Will I be one of these 30% and if not, will I lead the life I want? Is this the best it is going to get? Is this it? 

Daily Caption: It is now over three months since diagnosis, and I am in the grind of a new way of living, Saturday 25 May. Resting after cleaning my teeth, before showering. My body clicking: right arm and spine followed by aching in my lower back, as though it will buckle. Occasionally a sharp, shooting pain in my neck and head. I am not sure if I am getting a urinary tract infection, bubbles in my urine. More ringing in my ears, crickets louder. Is Wegener Anca Vasculitis returning? A side effect I haven’t recorded, not wanting to write it, not wanting to make it true is the additional facial hair, growing longer. It is one side effect I do not talk about with others. Many mornings hands shaking I try to tweezer them. 

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My throat sore, hurting each time I swallow, continuing during the night, it is there when I wake at 4.00am. Snot from one of my big blows is yellow in colour. Feeling hot this morning, my face streaked with sweat. I can’t tell whether I have too many clothes on or not, the air feels cool. Reaching for the thermometer I don’t have a temperature. Cold getting worse: lungs ache, throat sore, nose running, now a cough. My lungs have that strange smell I get with a chest infection, something sweet, and with each breath a tightness near the top of my lungs. 

Before Wegener Anca Vasculitis I would have gone to the gym with this cold, now an appointment at the medical centre. Outcome: right ear has a slight middle ear infection, temperature of 37.6 in the higher range but okay. There is nothing to do but wait, return to the doctor if my temperature increases or I begin coughing up phlegm.

Cold symptoms decrease ever so slightly with more phlegm in my throat, less nose blowing and coughing. As the morning moves along my cough deepens and lungs hurt, the snot from my nose a pale yellow. Throughout the day monitoring symptoms, I receive the results from the swab: rhino virus, confirming it is a cold and not flu. Daily Caption: It’s official I have a cold, Tuesday 28 May. If I had a cold earlier in this journey, how would I have coped. I have been through so much, worse than this cold. Stepping back from emotion, pushing it away when I need to, to do what I must do, an underlying fear sits just below the surface and terrifies, this cold could get worse. 

For now, the worst is over, relieved I look up information on colds on the Better Health Channel to find out and double check what I think I know. The cold virus is in your system for a few days before there are symptoms, a cold can last for around a week, and I find new information stating you can stay contagious for up to three weeks.

My cold lingers. It has been a week since I woke with a sore throat, it hasn’t got worse, I haven’t returned to the doctor. I blow and blow my nose generating about a quarter a cup of clear snot. I haven’t blown my nose like this since before diagnosis, can’t believe I’m writing this. The occasional pain in my lungs, blocked ears and that deep, dark pain in my chest and head return for only a short time but enough to remind me I have more than a cold. Standing at the front door feeling cold air, exhilarating. I cough and after each cough I taste and smell infection. I’ve had so many chest infections during my life knowing sometimes it goes no further and other times it’s severe.

My cold continues. Two weeks tomorrow and it could still go either way: clear up or get worse continuing for weeks. Sitting outside, sun shining, cool air, my ears are sore, the left one from fluid in the middle ear due to the cold. With no sign of fluid in the middle right ear it’s probably Wegener Anca Vasculitis, both ears are fucked. Realisation: my cold has gone. I dealt with this, and it did not get worse, I did not get a high temperature, didn’t go to hospital or have to take additional antibiotics. I have taken care of myself and been lucky. With my body so fragile there has to be some luck. I could have been as careful, and my cold still gotten worse.  

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Month of June: searching for my strength, wanting to bring it into view, as though it is just out of reach. Exhausted, too fragile to find it, locked somewhere deep inside, I continue searching. The reality of Wegener Anca Vasculitis sits strongly within, now part of who I am, how I live and why I fight. I crave for my old life, before all of this, wondering if, and when I will find acceptance. I have learnt to manage my physical frailty to a point, but I haven’t accepted, embraced this the life I now lead. Crying after my shower, different tears, of despair. Resigned and saddened to be living my life this way, overwhelmed with symptoms and side effects. And alongside this grateful. 

Always fearing I will fall with Stan coming home to find me on the floor, in pain, with broken bones, a broken body, more broken than it is. This all happened so quickly, the speed with which my body went from being strong to fragile. I cannot believe this is my life even although it has been over twenty weeks since diagnosis. Daily Caption: My body trembles, my ears are blocked, my head feels fuzzy, my legs are heavy WTF, Friday 14 June. 

What now? A lump on the front of my left leg, halfway between my knee and foot with a slight ache, it is solid and hard, different to the other lumps. Everything else is as it is. With so much time I continue to be fascinated with the red marks on my arms, watching and describing them as they come and go: one deep red in colour, thin and about one centimetre long. Matching marks on each of my arms, same place, size, and shade of red. It’s the small details that become my focus, how funny. More red marks on my right arm, overwhelmed. What does this mean? What next? 

A bad night waking at least ten times, slightly startled. Night sweats, throwing the blankets on and off. Wake tired and cranky. Occasionally a pain on the top of my head, like it is hollow. I haven’t felt this pain since before I went into hospital. Fearing Wegener Anca Vasculitis is strengthening as the treatment is lessening. The lump on my neck, fatty deposits from the steroids is my barometer for how I am. It is always there and changing in size, sometimes with a dull pain and pressure. This lump increasing when I am fatigued, lessening when I am rested and changing for everything in between. 

Daily Caption: My love of going to the hairdresser is even more important, except I must look at my face in the mirror with fatty deposits, Thursday 27 June. Today is all about going to the hairdresser. Natalie with her compassion, wisdom, and skill. Natalie is surprised how healthy my hair is, making decisions about what next. This is the how it’s always been. I explain to Natalie what I like and how I want my hair to change, and she does the rest. As we talk, she says, ‘This must have been so difficult for you, happening so quickly.’ Reflecting: usually as you age and your body begins to let you down it is slow and often not noticed, for me it was quick and complete. I had not thought of this before. This is what is different, the speed with which my body went from being strong to fragile.

For every new symptom and side effect, real or anticipated, the tightness in my stomach returns, always. I am wanting my appointment with Dr Jonathon Andrews to come quickly. Daily Caption: Is Wegener Anca Vasculitis taking over my body once again? Friday 28 June. 

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When friends and family ask, ‘How are you?’ it is difficult to explain. Each time I am asked it’s as though I get closer to describing and understanding what all of this means. Searching for words, I say something like: ‘I hadn’t realised how much the chemotherapy had impacted on my body, mind and spirit (I did say, “Me” but this is what I meant). Feeling lighter in myself but physically there is no change. My appointments are bitter, sweet because I know the Wegener Anca Vasculitis is being controlled, my treatment has changed but there is little to no change physically. Moving around isn’t any easier than it has been.’ Confidently, ‘I do feel stronger emotionally, psychologically and spiritually.’   

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Month of July: symptoms and side effects rarely change, if at all. I’m not going to keep documenting health issues in my journal unless there is something new or extreme. Daily Caption: No symptoms or side effects, 4 July. This is the first time I write this, and I will write it more and more. My strength is returning, not quickly or noticeably but I’m that bit stronger, can walk a bit further and enjoy doing exercises without weights. My arm exercises, I stand, position my core and do ten of: arms up and down from the side of my body, arms forward and up, arms held out from my side circling forwards and backwards, and sitting lifting a single arm up and down with my elbow firmly placed against my knee. These exercises made a difference at the gym. 

I exercise any time of the day, it isn’t like it was, no need to get into gym clothes, no sweating and no need to shower after. I am exercising in a different way, a way that is okay. Rugged up I walk daily along the street and walk more in our home and backyard. It has been so cold and wet lately but there have been moments of joy when I have felt the cold air on my face and body. Something is returning.

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