326 days to Antarctica..."Do the Hokey Pokey"...images of my new beginning
Approximately 12 minutes reading time
326days to Antarctica...
“To conquer oneself is a greater victory than to conquer thousands in a battle” the Dalai Lama
Hello again, these are images of my atrophied, skeleton hands and feet just before Christmas, so you can see what happened to me. The ANCA Vasculitis caused my small blood vessels in my arms, legs, hands and feet to become severely inflamed. These blood vessels constricted my nerves in my peripheral nervous system causing them to become severely damaged. The nerve damaged killed the muscles in my hands, arms, legs and feet. My skin was also affected and became patchy and purple. I allowed the Rheumatologists and Neurologist to take a skin sample from my foot to confirm the Vasculitis. The Neurologist was not satisfied and wanted a nerve sample, a sural nerve biopsy from my ankle to prove diabetes was involved. After much research and discussion with other Specialists and my sisters I refused. My instinct was to refuse this request because I believed that it was Vasculitis, which had shown up in my blood markers and something I had been cleared of in routine investigations and blood work the year before. The Vasculitis also known as Churg-Strauss Syndrome showed up when I was fighting for my life in January 2020 with the double pneumonia. Then again the markers were critically high during my Emergency Admission to hospital in June 2020.
I did not care what caused the crisis, I wanted to survive and get better. Most of all I wanted to be out if pain. The pain was hell and beyond unbearable and had been for months. The pain was ever worsening and the drugs barely made a difference. My brilliant Rheumatologists who are at the top of their field, like my other specialists, assured me that although incredibly dangerous and perhaps fatal; treatment was possible as was remission of the Vasculitis. The Neurologist came to persuade me a few times to have the nerve biopsy. I politely explained that I did not believe that the risk associated with the biopsy was worth the reward. Sural Nerve biopsy came with permanent loss of feeling in my ankle, high chance of infection and potentially indeterminate results. As I refused the sural biopsy the Neurologist took issue with me being given the Cyclophosphamide and wanted the treatment plan changed to one that was less aggressive using Methotrexate and steroids. The danger was that the Cyclophosphamide might kill me but the Methotrexate might not be enough to save me. My Rheumatologist didn't want to kill me unnecessarily, for which I was grateful. Luckily the skin biopsy results unequivocally showed ANCA Vasculitis. My original aggressive, industrial strength treatment plan was carried out swiftly.
For me, the real and pending danger was death by Cyclophosphamide which I was assured is an industrial strength chemotherapy drug only used in severe disease. Given my tiny size, severely weakened and broken body there was a strong chance that this drug and the incredibly high-dose and oral steroids I was forced to take to decrease the inflammation in my body, would likely kill me. Oh what to do?
I decided that if I ever developed Cancer and needed Chemotherapy and/or
Radiation therapy that I would refuse. My choice was to take my chances and
live the best life that I could for as long as possible. I did not want to
suffer these terrible drugs and the associated side-effects. Now here I was
agreeing to treatment that I needed but didn't want to endure. The reason I agreed to the treatment was not because I am afraid of dying. I lost this fear in 2000 when I first faced this reality as an adult. I was suffering the most agonizing pain since January, which had continued to deteriorate, especially since April until the worst of it in July. I would have survived a couple more days without the treatment. I would have suffered the most horrendous pain, ever worsening and the suffering would be without any relief. I didn't want to be suffer any more. My family, friends who love me would have been burdened with a sadness and suffering I wanted to spare them, especially the children. If I survived the treatments, which, many times, I almost didn't make it but if I did, I would get between five and ten good years, including my recovery. If I was really lucky, maybe I would reach old age. It was a chance worth taking at this time. The price was incredibly high. I survived.
treatment was almost five hours after a long, careful preparation by specially
trained nurses. This is a highly toxic drug so everyone coming near me or the
drug wore the specially colour-coded orange and purple Personal Protection
Equipment (PPE) to keep them safe. It is incredibly confronting to have a toxic
drug injected directly into your veins when everyone else is in HAZMAT gear and
the drug is covered with a black industrial-strength plastic bag to keep the
toxicity in check. This was possibly the lowest and most vulnerable moment of
my life. After the treatment my bodily fluids were cytotoxic for seven days.
Something I took incredibly seriously and did everything possible to avoid
cross-contamination of any kind. No mean feat. After my treatment I had my
first hand-therapy session and physiotherapy session. These exercise regimes
were gruelling for me but I spent every waking moment working to rebuild function
and my body. Nobody could believe my progress and success. I was a tiny, useless, unfeeling, broken clump of bones and skin.The doctors and nurses couldn't believe my tireless efforts excercising to get my fingers, hands, arms, feet, legs and body working. It was such agony and unbelievably difficult but I continued through my horrible, grim reality. For me, without a functioning body and mind, it was not worth being alive.
No-one was allowed to visit me because of COVID-19 and my high risk, highly vulnerable condition. I was also in the most secure hospital ward in the hospital – the Transplant Ward, so tighter controls were in place by Health NSW and the Hospital. Nonetheless the horrible Ukrainian woman in the bed next to me who delighted in terrorizing, tormenting and torturing the Medical and Hospital staff with all kinds of abuse throughout her stay, was having eight visitors at a time. Staff were constantly asking her visitors to leave and informing them of protocols they continued to ignore. They came back after the shifts changed and didn’t sign-in. My friends and family were calling me and all wanted to visit but understood the safety issues and did not want to jeopardize my safety. I missed the man I loved who was able to comfort me in a way nobody else did. He is the only person who has ever made me feel really safe. My nurses and the hospital staff were amazing, kind and generous. They all took the most wonderful care of me and looking after me as I could do nothing for myself. My dignity was not compromised, except for two occasions towards the end my two month stay in hospital, for which the nurses in question apologized. I was incredibly lucky to have such good care. I still cannot believe that I found myself in this predicament. I had been independent since my childhood. I wanted my independence back and have it now.
Upon seeing me get my chemotherapy she started bullying me and the medical teams about having me moved because my chemotherapy was putting her at risk. They knew they her motive was her own room, even though it was my room first and they all loved looking after me. This woman said the most hateful things to and about her own family. Her behaviour was appalling, hateful and cruel beyond belief. Everyone was mortified, including me. Strong as I am I was reduced to a helpless ball of constant tears who could do nothing for myself. The teams were respectful to us both and secretly whispering apologies to me. In the middle of the night I was awoken by shouting and screaming as this woman yelled abuse at me and yelling at the nurses to move me. I had not slept properly since December 2019, even with the drugs and I could not sleep on my side because of the severe nerve damage to my body and I snored. She told me that I deserved to die because I was putting her in danger because of the chemotherapy I had earlier. The bullied and terrified nurse told me to sleep on my side as the woman demanded. I told her that I could not because of my nerve damage. Death was still imminent for me. The nurse in charge was sick of being bullied by this woman and was going to move me to a ward because I was quiet, polite and easy prey. I refused. I demanded to see the Nurse in charge of the Hospital. I had learned about this whilst hospitalized in January, for almost two months with a critical double-pneumonia and loads of complications caused by treatments. For another hour I endured abuse and was told that I was being moved. A middle-aged man walked in, introduced himself and told us we either stayed put or both got moved to a ward. I was outraged and said that I had done nothing and was being harassed and bullied but I wanted to stay put. The horrible woman acquiesced. In the meantime I had developed an infection, picked up from her visitors.
morning I told my Rheumatologist everything that had been going on, at which
she was outraged. A conversation was had with the Nurse Unit Manager and a
request for a single room was made because of my critical condition and this
nightmare situation. I was moved to a room on my own, shortly after. Then I was moved back to Covid-19 isolation whilst I waited for my test results. I was cleared for the third time.
This woman was a type-2 diabetic who had developed a foot ulcer months before she arrived at hospital. Her condition was self-caused because she admitted to ignoring medical advice or undertaking her prescribed treatments. Since having been admitted to hospital, teams of doctors worked tirelessly to save her foot whilst she ate junk food and lied them about what she was eating. She was infamous. I heard from another patient that she had been moved out of the ward to have her foot amputated. Once again The Bible comes to mind, Gateway Galatians 6 “7 Do not be deceived: God cannot be mocked. A man reaps what he sows. 8 The one who sows to please his sinful nature, from that nature will reap destruction; the one who sows to please the Spirit, from the Spirit will reap eternal life. “ web.mit.edu/jywang/www/cef/Bible/GAL+6.html
As a child I loved the Old Testament and this was re-enforced throughout my Catholic education. I believe that every major religion, if not all, has a version of this proverb. In Metaphysics the ideas of harmony and balance within the universe support this proverb. It is also known as Karma and Yin and Yang. As a scientist this proverb fits with Newton’s Laws of Motion. “In the first law, an object will not change its motion unless a force acts on it. In the second law, the force on an object is equal to its mass times its acceleration. In the third law, when two objects interact, they apply forces to each other of equal magnitude and opposite direction.” www.britannica.com/science/Newtons-laws-of-motion
Aside from this one woman, my room-mates and their designated visitor were a fabulous, mixed bunch of people with whom I shared many great conversations and laughs. The bonus of this terrible situation was the great company that I enjoyed. Since March I had been in isolation because of Covid. For the first time in my life I learned about loneliness. Throughout my hospital stay, everyone, including patients and their visitor(s), told me how much I was inspiring them all. This sentiment was shared by doctors, nurses and hospital staff who had gotten to know me over my long stay. The medical teams all told me that I was completely different in person to my medical records. Given the severity of my illness I should not be able to function at all let-alone do everything I was managing to do each day. I wasn't supposed to be alive. I wasn’t supposed to be so pleasant and/or so happy and cheerful. The Occupational Therapy team had sent a Psychologist to assess me as they worried that I was a suicide risk given all the horrible, terrible traumas I had already faced in seven months and how my life and body had been destroyed, exacerbated by my current disability. He was amazed when he met me and could not believe that I was not depressed. He told me that he "... found me remarkable, delightful and unexpected in the most wonderful way." He said that "I was incredible and inspiring and that I needed to share my story as these last months of my life were unbelievable as was my coping and recovery with these terrible, compounded traumas." He told me "that I had the ability, capacity and resources to really help a lot of different people as people struggle and do not know how to cope with a single trauma or illness or Covid." I am a rare and special creature in this way. I shared with him some of the things my mother had taught me, philosophies and beliefs, anecdotes that gave me what I needed, what made me the Warrior that I am. He asked me if he could use them as he loved them and believed that what I had shared with him would help others. I agreed. The details are in my book. They "...were amazed and inspired by my spirit and my joy, my optimism and my cheer given all the horrors that I had survived, one after the other and still facing each and every day." My friends said the same thing. I am humbled.
Before I was discharged from hospital, I was barely functioning. The Head of Occupational Therapy came to see me and told me that I was beating all expectations with my recovery and function. According to my medical records and condition, illness, I was supposed to be completely and permanently bed-ridden whilst being moved to a wheelchair with a hoist from the ceiling. NEVER would this be acceptable to me. I was told by her that I did not need any Physiotherapy as I was not as bad as the worst spinal patients in the hospital. This outraged my room-mate who was horrified by what she heard, as much as it shocked and appalled me. FUCK YOU!!! Was my silent response, as it always is when someone tries to set limitations or expectations upon me. Most especially, when someone tries to tell me what I cannot do…Fuck You! Watch Me!!! Here I am.
I did agree to go live in a home with four other disabled people and carers as I was so terrified to go home as I did not have appropriate or adequate strength, dexterity, motion, control or ability to be able to function independently. Luckily because of incompetence they didn’t arrange this place for me. If I had gone into the Disabled Home, I would have been dead in days from a broken heart and my condition and motivation would have deteriorated. It took all my courage to come home broken, a shell of the woman, the person I had been and survive and thrive. I did it and am continuing to win, every day, never easily and with tons of work and commitment. I am happy and incredibly busy and loved. I live life my way. This is my choice about how I want to live my life. The details are in the book. I will share with you how I managed because my story has already helped others facing obstacles similar to those I faced upon discharge from hospital, from loads of different and surprising reasons.
"...Put your right hand in, you put your right hand out, you Do the Hokey Pokey and you shake it all about...you put your left hand in, you put your left hand out, you Do the Hokey Pokey and you shake it all about..."
If you have any questions, please feel free to ask me in the comments section below.
Watch this space……see you soon