The Trigger, The Employer and The Future
Susan, October 2016
The trigger to the gun that shot out my body’s first RA symptoms occurred at my employer’s office where I experienced workplace violence trauma as a 52 year old woman. Within 24 hours of this incident my body reacted with painful shoulders that caused sleepless nights. My General Practitioner advised that my ailment was ‘just aches and pains’ and referred me to a physiotherapist. Six weeks later, after a blood test, I received a phone call out of the blue from a Rheumatology Practice in Wollongong confirming my appointment with one of the specialists. What a way to find out I had RA! I went into shock and had no idea was Rheumatoid Disease was but I knew it wasn’t good. My part-time country GP decided to be proactive in securing an appointment for me but didn’t plan to tell me until my next appointment and didn’t expect the Rheumatology Practice to phone me.
My experience with the health system was good, bad, ugly and then good again. With the exception of how I was informed about my diagnosis, no rheumatology nurse or patient community to support me, the first couple of years were ok because I had a very professional, kind and supportive professor of rheumatology. He had excellent communication skills, which was a huge advantage. He first prescribed Prednisone and Methotrexate, which helped reduce the pain. However, the Methotrexate caused nausea and I was then prescribed a weekly biologic subcutaneous drug called Enbrel. The process of having to self-eject in my gut terrified me. My introductory kit was supplied by the pharmaceutical company, which contained a small esky, an ice brick for transporting biological drugs, disposable needles, anti-septic skin wipes and a user-guide CD. I wished I had been referred to a rheumatology nurse who could have supported me through this process. I would have experienced less stress if a specialized nurse could have helped me do my first injection and given me assurance throughout my first year until my condition stabilised. I’m blessed to have strong networking skills and asked around town for a nursing friend to show me how to do my first injection.
However over the next couple of years my husband’s coping skills with both his own life and my condition slowly deteriorated and I experienced a very stressful divorce. I had to pack up by myself and relocate back to Sydney as well as weave in some fun and support my daughter with her wedding plans and my need to be a loving and effective advocate for my adult son who has a disability.
Once again my body reacted to unexpected stress with crippling full body pain resulting in several long-term emergency hospitalizations. At the same time the flare destroyed both my hips. I had to have left and right hip replacements while my rheumatoid flared up like a nasty dragon causing uncontrollable pain. Several rheumatologists struggled to find the right medication and I worried that they wouldn’t find something to stop the pain and I was going to die. The slow waiting time between rheumatologist appointments, blood tests and government approval processes was very frustrating and a contributing stressor at the time. During all this time I had NEVER spoken to another patient suffering from the same disease as mine because I didn’t know anyone and I didn’t know how to find them.
It took me three attempts to find a good, local rheumatologist in Sydney – one I would have liked to have sued for his appalling lack of professionalism. He was assigned to me when I as admitted to a NSW state hospital via emergency. I had a horrible experience because I was sent to a bed in a ward surrounded by people dying of various diseases at Christmas time. Not even the hospital staff really knew what to do with me. I have been admitted to several state hospital emergency units and all the clinicians aren’t trained to handle my condition. We really need clinicians to have more training with the effects of full body Rheumatoid on patients suffering from influenza or gastro bouts etc. The second rheumatologist was excellent and agreed that I had been mismanaged but advised me to retain my spirit and energy to survive the dreadful flare. Unfortunately he lived on the other side of Sydney and my daughter had to drive me because I was in too much pain and distress so I eventually found an excellent local rheumatologist.
Whilst lying in bed in hospital with a new hip, I felt quite alone except for my daughter who was always understanding and supportive. I had good friends and caring family but they didn’t seem to understand my disease.
My poor old mum worried about me but didn’t understand that I couldn’t care for her while I was so ill. She refused to have temporary aged care until I recovered and our relationships became tense as the very high levels of prednisone (75mg daily) I was taking to alleviate my pain caused manic shouting moods. The prednisone made my skin tissue thin and bruised easily. My new rheumatologist hospitalised me for several weeks and trialled a new biologic infusion of Mabthera, which I have since been successfully using for the last 5 years. I was slowly weaned off the large doses of prednisone and I’m now on 1mg daily, touch wood.
Despite all these drugs my life is quite manageable relative to the very bad pain I experienced at time of my hip replacements and hospitalizations. I can still only walk approx. 300 metres and suffer ongoing fatigue and constant full body pain at a level of approx. 3/10 but after adjusting to and accepting a new lifestyle, I’m relatively ok.
I felt my family and friends found it hard to grasp an understanding of my disease. My son is very loving but isn’t capable of physically helping me. My daughter is wonderfully smart and supportive - she is busy with a young family and demanding senior managerial job. She lives nearby and we chat or see each other daily. My two beautiful granddaughters bring love, joy and fun to my heart.
My friends still often don’t understand and say things to me like ‘but you look so great and still do so much’. Because they don’t ‘see the pain’ I feel misunderstood with their inference that I am carrying on about nothing when I’m feeling constant pain …. I find the best way to manage my relationships is staying involved in my twelve step spiritual fellowship. We often meet for coffee or go on a holiday together with our companion dogs. They understand my need to just walk 200metres and then stop for a coffee while they continue walking. I have learnt to enjoy these quiet times.
My work or the lack of it and how I have coped: As my RA and Post Traumatic Stress conditions were ignited as a result of workplace violence I spent the following years struggling with the challenging adversarial Australian Workers Compensation (WC) system. It was a time of dealing with numerous hospitalizations, specialists, pathology, medication trials and the additional visits with insurance company-ordered appointments to provide medical reports. My GP queried me on several occasions that I consider withdrawing from WC insurance battle. I felt on principle, as a former Safety Health and Enviro Management system business development manager that I just couldn’t walk away from what I believed was lack of duty of care by my employer. Once I sought Workers Compensation I found return-to work negotiations with my employer highly stressful (including lack of support by all staff members with limited duty of care for my Return to Workplace adjustment needs etc.
In an attempt to look after my mental and emotional needs, I invested in a home based writing business that related to my workplace skills where I remained unemployed but engaged in the business world dealing with a diverse range of clients on-line and by phone.
I also signed up for volunteer work which together with my small business, I had the flexibility to regulate my complex health / personal needs and time constraints on a casual basis without any undue stressful deadline demands. This work, together with my engagement with a spiritual community, has kept me relatively emotionally, spiritually and mentally balanced and strong enough to maintain my WC battles. I have developed excellent teammates as my business is part of a 40-small business global cooperative network and we communicate via email and Internet conferences. In fact after the WC process concluded I had the time to travel overseas with new friends where I met up with my Asian and American colleagues. I have to plan my medication and disability accessible venues and consult with my specialist whether certain parts of the world are a risk to my health. This work has given me the best opportunity to maintain continuous professional development and remain relevant in the workplace community.
I have learnt that to enjoy a good life as a mature-aged single woman suffering from full-body RA, I needed to reach out to the community and remain engaged in areas that make my heart sing. My first attempt involved me attending several workshops on self-care organised by a general arthritis organisation. There weren’t any follow-up opportunities to connect with the other attendees and I arranged to meet up for coffee with a few of the other attendees including fellow RA sufferer, Michael Gill. Our small group enjoyed chatting about our diagnosis, medications and lifestyle adjustments but they soon drifted due to most of us living too far away from each other. One day Michael rang me and asked if I was interested in helping him develop an on-line community exclusively for sufferers of RA Lupus & JIA. I happily agreed to help out with this new organisation as I had previous experience co-founding a Not-for-profit disability organisation. So began my journey of learning the importance of hydro therapy, nutrition and managing work/life balance and feeling empowered by encouraging others to self-care which mirrored to me my own self-care – the magical power or a group.
I regularly exercise at a local heated pool and have a weekly remedial massage. I have cut out red meats, reduced fatty foods and sugars and mainly eat fresh vegetables and fruit and have introduced seeds and nuts to my diet. My changed lifestyle has improved my self-esteem and confidence and I really enjoy doing volunteer work with my new friends in the DC Patient Advisory Committee. There is nothing like working with people who have survived these diseases and continue to enjoy life despite the lifestyle adjustments we have needed to make. We have managed to stay united thanks to phone, emails, skype conferences and the odd time to catch up in person. It has been a delight and privilege to get to know such a diverse range of co-patients suffering from the same disease and coming from different walks of life.
What about the future? I try and live one day at a time and work at maintaining relationships with positive people who are empathetic about my disease without us having to talk about it except on relevant occasions. I continue to focus on doing things I enjoy, especially the things that I’m passionate about e.g. being with my family and friends, planning my next travel trip. This includes researching venues without steep staircases, not long paths to walk, and hospitals with English speaking Rheumatologists, ways to transport my medication and update my list of conditions and medications for doctors etc.
My twelve step fellowship groups and meditation continue to help me stay in touch with my inner wisdom - remaining assertive, communicative, keeping personal boundaries and detaching from other people’s problems. Whenever things get on top of me, I head off for a massage, coffee with a friend, swim or spend time in my cottage garden. Of course volunteer work with Dragon Claw has put a spring in my step – it is such a blessing to now have my new mob to help make a difference in others’ lives so hopefully they don’t walk out of any Rheumatologist’s office without knowing about their on-line community. They can now connect with others facing similar challenges in their lives and knowing that life can still be wonderful with their newly empowered skills to self- care.