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 8: Always Something

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

10 March 2019: staring at myself in the mirror, is my face fatter? Is it the beginning of the impact of the steroids or my imagination? My friend Marg is visiting later, I will ask. Is there a need to ask? Probably not, I don’t want this to be true. 

Asking Stan, he responds with concern, ‘Yes the shape of your face is changing, people will understand.’ ‘I will worry about what people think later.’ The feeling of not knowing myself when I look in the mirror returning more strongly. Our home filled with mirrors from the 1930s, 40s and 50s there is no way I cannot see myself wherever I move. Instinctively I look at everything but the mirrors. Moving from our bedroom to the kitchen a mirror sits above our fireplace. I look through the lounge room window with the green of the plants, the silver of the water tank or to the dining room window seeing our front gate and the home across the road or to the kitchen with white cabinets and drawers. Never looking at myself in the mirror even as I glance at the black and crystal lights above the fireplace. 

Marg and I talking, we are outside, facing each other sitting in the same pose, feet propped on another chair, bodies turned toward each other. A mirror image. Marg is happy sitting outside in the warmth, on our deck, commenting, ‘Hard as this is I like the way you sit with me, not moving, not doing things all the time. You are totally engaged in our conversation.’ Eventually I ask Marg if she can see the fatty deposits in my face, ‘I notice and I don’t. You are still you.’ ‘When I look in the mirror I don’t see my dramatic cheek bones, my David Bowie cheek bones.’ Marg, a nervous smile. Whoops, a story I have kept to myself now shared. Both laughing, ‘That’s what I see but I do know it’s not true, really.’ What I had is gone. Marg hates hearing the words fatty deposits, ‘Marg let’s call them my FDs.’ ‘I’m going to call them your FFDs.’ They are now my FFDs always when I am with Marg. 

Before going to bed a new fatty deposit on my forehead, in the morning one in the middle of my chest above my breastbone. OMG where will the next one be? Fatty deposits moving in my cheeks. Waiting to eat breakfast a tightness around my belly button, standing a slight pain and leaning against the bench in the kitchen I wince.

*

Making a vegetable casserole, the one I made in my twenties when I was vegetarian, knowing Stan isn’t looking forward to it, it’s bland and mushy, so different to his tastes. Sitting at the table preparing the vegetables, saving my energy to stand and cook with the casserole ready for dinner, served with chicken tenderloins. A sharp pain on the left side of my neck near my shoulder, lasting for a moment. Raising my hand, a lump the size of my palm. What the fuck! What now? Where did this come from? Was it to be expected? What do I do? I cannot move. Stan calmly, ‘I noticed it when we had lunch. I thought you knew it was there.’ During the night it subsides, in the morning it has gone. 

Three weeks later extreme swelling on the left side of my neck followed by minor swelling. What is this? Learning to sit with this, let tears come, I don’t know what else to do. There is nothing I can do until my appointment with my GP Dr Nico Rossi. My vitals checked: temperature, oxygen intake, heart rate, sugar levels and blood pressure all good. Now to the lump on my neck. Nico, explaining it feels like fluid, it isn’t glands but the lump is in an unusual place adding, ‘Try not to worry.’ Action: a scan that is precautionary, giving more information, reception will fax details to John Fawkner Hospital. Stan books the scan as we sit in the car. It will be tomorrow, relief. Gently I say over and over, ‘Give me the serenity to know the things I cannot change.’

Daily Caption: A scan for the lump on my neck, Thursday 4 April. The lump is larger this morning, a slight headache with fuzziness and my throat constricted. My body shaking as I walk down steps to have the scan, exhausted. The scan shows fat only in the lump with the lymph nodes, arteries and veins all good. The technician brings a doctor into the room, and she confirms. This is the best news I could have.

*

Daily Caption: A visit to Natalie, my wonderful hairdresser, Monday 8 April. A lovely time with Natalie as she shows her gentle compassion and care. The stress of walking from the car to the salon and to the toilet twice, is all worth it. Natalie has done more research on wigs, just in case. In the mirror all I see is my rounded face, the side effects of the steroids. Natalie will know what to do with my hair. She won’t be able to hide or make this go away, but she will acknowledge and do her best. Natalie takes control of the cut and colour, and I love it, a sixties look. As I leave Natalie says, ‘You look well and as I look at you knowing what you have been through it is hard to believe.’

*

Always something, what next? My skin becoming thinner, papery. Stan, as only Stan would, buys natural cleanser and moisturiser recommended by the pharmacy and used in hospitals. Placing it in the bathroom and powder room, now having a range of hand cleansers and moisturisers, from our special Little Black Dress hand moisturiser to sanitiser and foaming hand wash, claiming to remove all germs. The skin around my nails is hard and dry with one of my cuticles beginning to bleed. Is it a side effect or from washing my hands so often? Talking with Lee, Stan’s son and Jacqui, with Jasmine our granddaughter playing nearby Lee shares, ‘It’s better to wash your hands than sanitise.’ ‘I think the skin around my fingers is dry because I am washing them so often. I need to care for them.’ ‘Nothing is simple for you now.’ What I once did I cannot do anymore, and it doesn’t matter whether I like using sanitiser or not I must make different decisions. I never know if my decisions are right or wrong or help or hinder.

More red spots on my skin, especially on my arms, I look each day. Today on my left arm are two small red spots slightly raised. Now a red spot on my face, two smaller ones on my left lower arm, one large one on my right lower arm and one under my arm browner than red. One of the symptoms of Wegener Anca Vasculitis is red spots. In hospital Dr Reynolds often asking if I have any. I didn’t. Are these red spots a symptom or is it the drugs effecting my body? Stan and I once again go through the side effects of each of the drugs, mostly checking for red spots. Red spots are a side effect of steroids and of chemotherapy maybe explaining the different types. Stan continues reading each side effect, I am now ticking off more. 

Dinner with Stan and our granddaughter Tahlia, I talk as much with my hands as my voice, a sharp pain in my right shoulder. Tender and heavy the following morning, not all the time but often enough. Everything is as it has been: my legs heavy and unsteady and my left hip weak, sometimes very weak. Overwhelmed knowing the pain in my hip may be a rare side effect of the steroids. Dr Jonathon Andrews said I must contact him if it gets worse, worrying me more. Always aware of my hip as I turn in bed. Standing in one place for more than a minute, the pain increases. Before going to bed my left leg and thigh especially heavy, hip hurting. 

My arms and legs looking like those of frail old women, the muscle tone gone. My neck weak, I rest my head on the back of the couch. Scared these side effects could be something rare, to be feared. Concerned with my spine and neck clicking as I moved last night. Always careful in my movements, taking it slowly. This is all I can do, there is nothing more.

*

So very thirsty, worrying I may have a urinary tract infection. Watching Ted Talks, taking me beyond myself, into the world of others, listening to their stories. Continuing to drink lots of water, going to the toilet when the urge first comes. Why a urinary tract infection now? Could it have been holding on yesterday, although not for long? Could it have been drinking the sports drink to increase my salt intake, maybe too much? Or was it I was so exhausted last night I didn’t drink enough water?  Thinking if I didn’t drink as much, I mightn’t need to get up to go to the toilet so often. 

Today drinking water only, drinking what I need. I do not really know what caused this urinary tract infection and I cannot do anything about what has been; with the day progressing I’m not as worried. I won’t tell Stan of my fear of a urinary tract infection, not right now, this news can wait. Doing research using the Better Health Channel, realising how little I know about urinary tract infections. Finding that while cranberry is often suggested you could not drink enough and if you take cranberry tablets you need to inform your doctor as they can negatively interact with other medications, no cranberry this time. 

An appointment with my GP Dr Nico Rossi, a urine test and now I wait for Nico and Dr Jonathon Andrews to decide what is next. Stan says, ‘They will have dealt with this before, Jonathon is an expert. He will know what to do.’ I do trust them. I wonder what tomorrow will bring. It may bring a new tablet to add to my collection or a trip to hospital or … I am as content as I can be, waiting and writing. Of course, thoughts swirl of, should I have gone to see Nico earlier? I do not know, and never will, but maybe next time I will go straight to the doctor and not explain away my symptoms. I am an imperfect perfectionist and this is what I will always be. 

A phone call missed from a private number, a message left. It is Dr Nico Rossi explaining, ‘It is a rare type of urinary tract infection. The usual antibiotics won’t work and the ones I could prescribe may harm your kidneys. I am waiting for further advice from Dr Jonathon Andrews. You may have to wait until tomorrow.’ Nico suggests I contact him if it gets worse. It isn’t worse, I will wait. Crying I explain this to Stan, crying more he holds my hand. Lunch and I cannot eat, hoping the next lot of tablets will keep me alive. Struggling, crying, and working on myself in a way I never have before. Other tough, difficult times pale into insignificance. 

Arriving for my appointment with Dr Nico Rossi the antibiotics for these bacteria have been decided: a lower dosage, for longer, to protect my kidneys. Another urine test in ten days to check if the medication is working, it’s a waiting game. Ten days later the urinary tract infection seems as though it’s just still there. Results show it has gone, is under control. Good news and joy alongside the reality of what this treatment is doing to my body, the impact so strong. Wishing there wasn’t always something, and everything wasn’t so rare and complex.

*

Daily Caption: A day of reflection, contemplation and wanting to go deeper, Tuesday 23 April. I know I haven’t gone into that deep place with my health. My body so fragile, muscle tone depleted, moving slowly and carefully, this is my life. Believing the more I do the healthier I will be, fearful to move too much, I am conflicted. Taking such care of myself doing everything I am told by specialists, following every piece of advice but still longing for the time before ‘this’ when I treated my body with respect by eating and sleeping well, drinking lots of water and exercising, pushing my body, releasing stress. 

I have been arrogant with others always sharing how healthy I am, how well I sleep, extent of exercise and always able to do lots. It was all caught up in my ego. As friends and family shared stories of their latest health issues I did not have any to share, only distant ones where I quickly and easily got well. I did not understand what it meant to them to be living and dealing with chronic health conditions that were always there. Were they fearful? 

My once strong healthy body is gone. I am tired, so tired. I know the induction treatment is six months, and it may be two years before any sign of remission, if ever. What I would give to have my body back the way it was, for only half an hour or ten minutes. What a relief, 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