More about Sue
In 1999, Sue was diagnosed with primary biliary cirrhosis after she had some abnormal liver function tests. Having always considered herself a very healthy and active person, she struggled to reconceptualise herself as someone living with a chronic illness. While being grateful to the doctor who initially diagnosed her illness at a comparatively early stage, she sought out a GP who would help her manage the illness and who had a holistic approach, as this made the most sense to her.
Apart from the necessary prescription medicines, Sue’s GP also recommended a number of complementary medicines to assist with some of the side effects of her other medications and to improve her overall wellbeing. She is reassured by the fact that her doctor regularly reviews her blood results and adjusts the dosages accordingly. Nevertheless, it has meant that she has had to be very organised and methodical so that she can keep on top of the changes. She has developed several methods of keeping her medicines organised, including a single medicines ‘master’ list, but also uses her diary to keep track of dosage changes. She often wonders whether her way is the best way of doing things, but it works for her.
In 2008, Sue had her first episode of pyoderma gangrenosum, a serious ulcerative skin condition and, at one stage, was in danger of losing her hand. Treatment involved three weeks in hospital, multiple operations to clear the necrotic (dead) tissue and repair surgical wounds, and medication. Had it not been for these treatments, the outcome for Sue could have been so much worse.
Sometimes, Sue has found it difficult to find information and support as her illnesses are relatively uncommon, but she has been proactive in seeking information from the internet. On one occasion, it put her in touch with someone who shared her skin condition and this led to a recommendation for a medication to treat a troubling symptom. Sue was thrilled when this worked and was pleased that there was an avenue available to share experiences and to feel that you are not alone.
In 2012, Sue was hospitalised and diagnosed with auto-immune haemolytic anaemia. With the addition of new medications, her medicine regimen became very complex and challenging to manage. Sue does not, however, like to be dictated to by her medicines and tries to live as normal a life as possible. At times, she has difficulty swallowing them all and will often take them with a mouthful of food rather than water, as they seem to go down more easily.
Sue is now 12 years post diagnosis of her liver condition and credits this largely to her medicines, both prescription and complementary. While the cost of her medicines has required her to prioritise things at times and she has not been able to travel as much as she would like, she accepts that the medicines are just part of who she is now and that, in taking them, she is doing something constructive in fighting against and managing her conditions.