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

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

Chapter 7: Noticing, Wondering   

I thought my improvement would travel along a straight line, naive. Confused by the complexity of symptoms and side effects: intensifying, lessening, always there, occasionally something unexpected. Intellectually understanding there will be an impact on my body, not being able to make sense of what is causing what. Is it a symptom, a side effect or my body? 

Symptoms, Side Effects, My Body, Cathy Beesey 2019

Impressions from my daily recordings, so many questions as I notice and wonder.      

Daily Caption: 2 weeks of treatment and my blood sugar is high, Monday 25 February. Visiting my GP, Dr Nico Rossi, blood sugar level is 12.1. OMG, not me, high blood sugar, leading to diabetes, unexpected. ‘Should I monitor my blood sugar?’ ‘Yes. I will inform Dr Jonathon Edwards and Dr James Reynolds, your specialists.’ 

I want, need to be home while Stan goes to the chemist to buy a blood glucose metre. Talking with Tahlia our granddaughter of how this is another thing. She asks, ‘How is Pa?’ ‘I think he needed to go to the chemist to help him deal with this. I’m going to write in my journal, it helps make sense of what is happening.’ Tahlia talks of learning about journals in her class today, Youth Work RMIT. Writing for only a short time Stan is home with the blood sugar contraption, trying to work it out, I don’t move. I never read instructions; Stan always does. Tahlia gently taking the instructions from Stan begins to read them. 

I ask myself, ‘Should I start taking my blood sugar straight away?’ I can’t face it. Learning how to do it can wait. It has only been a couple of hours since my last test. I can’t eat, feeling as though I will vomit. Watching television: an inspiring Australian Story about a near death experience. I’ve always been interested in these stories, now more so. I am not upset, this story giving hope. And then Four Corners and my favourite Media Watch: I can’t take it all in. 

*

Early morning routine complete, I begin searching for information on the Diabetes Australia Website. Is this another side effect of the drugs? My need to know helping to make sense of my emotions, to put things in perspective. Diabetes can be induced by steroids. This is serious, could be lifelong. I tick most of the boxes for symptoms of diabetes: Feeling excessively thirsty ✅ Frequently passing large volumes of urine ✅ Feeling tired ✅ Blurred vision ✅ Infections ✅Weight loss ❎ I wonder, are these symptoms of diabetes or vasculitis, or side effects from the drugs I take? 

Remembering: in hospital when I had my blood sugar taken I was always asked how long it had been since I’d eaten. I check this out too. It must be first thing in the morning before eating or at least two hours after food. There are different expected blood sugar levels at different times throughout the day. My blood sugar levels checked in hospital were always in the reasonable range. Now this?

Waiting until before lunch to take my blood sugar, body trembling, I cannot write, I try reading. I sit inside, not out, frozen with fear. Body shaking, head dizzy, not steady on my feet as I walk to the table. Stan working out how to use the blood glucose metre, he is patient. I suggest, ‘We could go to the pharmacy.’ ‘I can do this,’ and he does. I don’t know how I will prick my finger with the lancet, but I must. 

Memories: I was seven years old in the Royal Children’s Hospital, blood taken daily with a prick of my finger. I hated it. Smiling: remembering having my ears pierced with a needle when I was sixteen by the doctor; beginning to faint I must lie down. No tattoos for me as much as I want a bracelet of red roses with deep green leaves around my right wrist. 

Reality: I don’t want to do this, prick my finger, but I don’t want Stan to have to do it. I will learn and do this test three times a day until I see Dr Jonathon Andrews. The essential tremor making my hands shake; I cannot put the blood on the strip because it must be put in the right spot. Still not quite getting it together with marks on three of my fingers, failed attempts. Stan cares, I don’t.

Blood sugar reading before lunch is 6.8, relief, result recorded with date and time. Stan thinks Dr Nico Rossi, or the machine may have made a mistake. I think I was so stressed maybe that did it. We will never know, both wanting to explain why. My blood sugar reading at 9.30pm is 8.8, in the good range. Next day my blood sugar at 11.00am is 5.9, good results continue, relief. Daily Caption: Where did my health go? Tuesday 26 February. 

*

My immune system compromised by the chemotherapy and steroids, I fear getting a cold or flu, my temperature rising, returning to hospital. My lungs impacted by Wegener Anca Vasculitis, I breathe from the very top of my lungs, not able to take a deep breath, becoming breathless when I move. Trying to meditate, breathing deeply causes anxiety. The early diagnosis means it is unlikely I will have lasting damage to my lungs and out of respect to myself, Stan, family, friends, and the specialists that diagnosed I won’t take risks.

Another day, another medical appointment. Fearing I am getting a cold GP Dr Nico Rossi checks my throat and it is fine, I want it checked while I’m here rather than to wonder. It is a relief. Friends Marg and Danni have had sore throats, and I don’t want to join them, they won’t visit, their duty of care.  

*

Lying in bed waiting for sleep to come, muscle tension below my knees and in my thighs. I wonder, is it the drugs? Is it cramps because I’m not taking magnesium and potassium? Are my legs weak from being in hospital? Is it that I am moving more? Is it because I am wearing shoes? Ankles and lower legs tingling and there is fluid with a change in the shape of my ankles. Seecialist Dr Jonathon Andrews said he could give me something for this. How will I know when? Finding a balance of moving, resting and keeping my legs up as I write; writing for too long without moving, my feet have gone to sleep. 

Shaky, weak legs, finding it hard to walk from the bedroom this morning. Often dizzy, not confident to walk on the street alone; confidence at home knowing this place so well, where I can put my hands to steady myself. Wegener Anca Vasculitis has taken my physical strength, stamina, something I was proud of. How could you take this from me?

Legs strained, muscles in my calves and thighs aching. Did I do too much yesterday? Taking it easier today, exhaustion making it even harder to move. It is cold, easy to sit inside. I could rug up and go outside, I don’t, caring for myself, not wanting to deal with the rapid change in air temperature. Muscle tone in my legs and arms lessening, noticing this. Dr Jonathon Andrews had explained this would happen. Every now and then and only for a second, I forget I cannot walk as I did. Standing is all it takes, struggling to move the way I once did. 

Stan and I talking about exercise, I’m longing to go to the gym. Linda my cousin, asking out of curiosity about weights to strengthen my deteriorating muscles. Walking and moving is so hard I fear overexerting my muscles could cause long term damage, never able to exercise with weights again. I haven’t asked Dr Jonathon Andrews about exercise, and he has not mentioned it. I know about exercise: strength and fitness, but will I know when I am ready and what to do from such a low base. I believe I will and if I don’t, I will ask.

Worrying about Stan, being so active all the time, his body must be exhausted. When it is the other way around and Stan is unwell, I do the same, I do things and do things. An aha moment, movement and doing is my greatest coping strategy, now gone. How do I find a different way to cope? Slowly I will find it.

*

A message to my hairdresser. 

Natalie I will need to change my appointment for Tuesday. I have been diagnosed with an overactive immune system condition called: Wegener Anca Vasculitis. Difficult to diagnose, can be treated with an extensive drug treatment. I am on tablet chemotherapy compromising my immune system and feeling nervous about this. I would like to come to the salon when it is quiet and if you have a cold etc just let me know and we can reschedule. I asked the specialist about hair dye and he laughed and said of course you can go to the hairdresser. I have medical appointments next week. I’m wondering if we could make it Tuesday 5 March around 1.30 but I can be flexible. Such a lot to take in! 

Thanks  

Natalie phones immediately with concern and solutions, ‘I will organise your appointment for a quiet day in the salon or I can come to your home.’ Daily Caption: It’s me again I am going to the hairdresser, Tuesday 5 March. Natalie is the first person I have spent time with other than doctors; and my family and friends, with their intense pain of what has happened, could have been and could be. It is refreshing. Natalie has read my text carefully knowing I am on chemotherapy, and she has researched this autoimmune disorder I am learning to live with. 

We talk of … if I lose my hair … ‘If your hair begins to fall out get in touch, we can go wig shopping.’ ‘Natalie I can see the end of no hair but I cannot imagine the process of losing it.’ Natalie shaved her aunt’s head, cancer, chemotherapy and if … she will come to our home. Natalie gently explains, ‘It can happen quite quickly. I will have the wig ready. Your hair is healthy now, I will do a special treatment. As your hair grows, the chemotherapy will have impacted, it may be drier. There are other treatments for this.’  

We talk of her dog she has fallen in love with and other clients with Rheumatoid Arthritis and Multiple Sclerosis. Not making comparisons, knowing the importance of hearing the stories of others I tell Natalie of my journal. She inquires, ‘Have you included positive stuff?’ ‘Definitely, I have so much to be grateful for.’ Gratitude: To Natalie for her kindness, compassion and information and alternatives if I lose my hair or not. 

* 

Daily Caption: Deep pain in my chest and head, Wednesday 6 March. Woken from sleep, pain in and around my lungs and heart, strong and deep it moves to my head. Is it Wegener Anca Vasculitis? My head and heart filled with fear, needing to write. Wanting to make sense of this: the physical, emotional, spiritual. It is 5.00am. Another night, this pain with an intensity that frightens returns, deep and low in my lungs. I don’t panic. I wonder, what is causing this? What are these drugs doing? How can my body and spirit have any impact against these drugs? Is it my lungs? Is it my heart? I don’t worry about my heart for long, it is strong. Thanks, Doctor Reynolds, my hospital specialist, for being so impressed by my heart. 

It is 3.00am, unable to alleviate the pain, getting out of bed I sit in the armchair in our lounge, in darkness, surrounded by shadows. Only metres away I know Stan isn’t sleeping, hearing his breathing, it isn’t the breathing of being asleep. He doesn’t leave our bed. My breathing shallow and rasping, the pain easing, I return to bed. Another night waking at 4.17am with pain in my ears and chest. A dull deep pain, a fearful pain, my crickets are back. There is no lying in bed. I want, need to get up, to ease the pain. This isn’t a quiet, calm, procedural morning where I turn on lights throughout our home. I don’t light my candle, have a cup of tea, I sit on my black leather wellness couch unable to move. I read, trying to lose myself in someone else’s story. 

Bed around 11.00pm, waking in pain around 3.00am, deep pain with stabbing from the bottom of my lungs to the top of my head. Moving from lying on my side to my back not making a difference. I’m not sure how long it lasts, maybe five minutes, maybe twenty. It stops, I sleep. Nine days later that terrible pain returns. It’s around 11.00am, lasting for fifteen minutes as I wait and want it to subside, tears roll down my cheeks, filling more tissues of tears. Telling Stan of the pain as I tell him everything, ‘This pain in my chest and head is the only real pain I have. My legs feel heavy, but it is not pain. I am thirsty but it is not pain.’ ‘That is good.’ With all the complexities of Wegener Anca Vasculitis and side effects of the treatment I have had little to no real pain. If I were to have some form of chronic pain at the intensity of which I feel the pain in my chest and head, it would be so much more to endure. I think of friends dealing with pain each, and every day.

Harder now, fearing for the future. What will this do to my body in the long term? How different will the rest of my life be? 

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