SAMMY S STORY. a woman s journey through Cushing s disease

Transcription

1 SAMMY S STORY a woman s journey through Cushing s disease

2 Life before Cushing s disease Life before Cushing s disease was fun, busy and full of adventure. I had always been an active, fit and happy person. I had a good job which I enjoyed and much of my free time was spent enjoying time with family and friends. I ve always been the type of person to throw myself into new projects and adventures. Even when I had my daughter, I didn t let it stop me from having new experiences and travelling! Life was really good. 2

3 Noticing changes in my day-to-day life A few years after the birth of my daughter, I began to notice small changes in my general health. I was feeling more tired than usual, I was thirsty all the time, I was having difficulty sleeping and I kept finding bruises on my arms and legs that seemed to last for a long time. At first, I didn t think much about it. I thought the changes were due to having a busy life and a lively toddler. Although I wasn t really feeling well or myself, I continued on as normal. 3

4 Seeing more changes in my general health Over the next few years, things didn t improve. I was still feeling quite unwell. I gained weight around my torso and my face ballooned. My legs and feet became bruised and severely swollen from water retention, I needed to urinate frequently and my left eye was often blood shot in the mornings. I also felt quite weak and was losing physical strength. During this period, I also experienced several miscarriages and eventually my periods stopped. I was attending General Practicioners at this time, but they struggled to understand what my issue was. 4

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6 Struggling to get a diagnosis I started to have different types of tests done, including checks on my liver, kidney, heart, respiratory system, circulatory system plus blood and diabetes tests. Unfortunately, my cortisol levels were never checked so I remained undiagnosed. 6

7 Eventually, I decided to do some research on the symptoms I was experiencing. It was then that I came across Cushing s disease. I brought the information I had found to my GP and my diagnosis was confirmed with a brain scan. 7

8 Dealing with my diagnosis The diagnosis was a shock, but at least I knew what I was dealing with. My endocrinologist directed me to the Pituitary Foundation who were an amazing support to me when I was coming to terms with my diagnosis. 8

9 They provided me with educational booklets, explained the surgery that I was going to have done and put me in contact with another Cushing s disease patient who lived locally. Although this was a difficult time, and I was still experiencing a lot of exhaustion and other symptoms, I felt supported every step of the way. 9

10 Time for treatment To treat my Cushing s disease, I was required to take medication and have surgery to remove the benign tumour on my pituitary gland. I was still feeling very exhausted and my illness was taking its toll on me physically and emotionally. I had many hospital appointments during this time and I had to take an extended period of time off work which was difficult. I had to learn how to deal with the realities of therapy and what to do in the case of adrenal crisis. I had a lot of support from my friends, family and the Pituitary Foundation during this time. Keeping a diary of my experiences also helped me to cope with the ups and downs of managing my condition. 10

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12 Seeing the light at the end of the tunnel Recovery from my surgery took time. I was still very tired and suffered adrenal crisis the first morning after surgery. With the support of those around me, I slowly began to regain strength and get involved in more physical activity. I started to realise how strong my body was for getting me through these traumas and coming out the other side my perspective became more positive. A year after my surgery, I found out that I would be on medication for the rest of my life but my newly found positivity meant that I took this news in my stride. 12

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14 Renewed optimism for life My newly found positivity has had a knock-on effect in every aspect of my life. I decided to pursue a career change and began studying to become an occupational therapist. I also applied to be a telephone volunteer with the Pituitary Foundation as I wanted to help others with the insights I had gained through my experiences. I eventually became a staff member at the Pituitary Foundation. I began to experience a feeling of gratefulness to the illness for reminding me how special and precious my life is. It s not always easy. I still experience periods of extreme fatigue and at times I cannot work but providing a kind, sympathetic and understanding ear to other Cushing s disease patients gives me a real sense of purpose and wellbeing. I now approach my life and any problems that face me with vigour, courage and enthusiasm and I always try to remain bold and optimistic in everything I do. 14

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16 With thanks to The Pituitary Foundation The Pituitary Foundation Telephone: END-PAT-0218-INT. Date of Preparation: February 2018 Cartoons by Simon Pearsall -