Saturday, 3 November 2018

Painting with lovely company

5 months ago we moved to new rented home and new landlord allowed us to get a small dog... 4 months ago we adopted little rescue dog Saffron, 4 year old, from Gran Canaria thanks to Petpals GC

Saffron is amazing little dog and really helps me with my Addisons ups and downs.... tonight she was resting with me while I was painting. She was actually very scared of fireworks and it took long time to calm her down. It was lovely when Saffron eventually calmed down and relaxed fell asleep on my lap



Saffron hiding from fireworks under the shelves:








New paintings












Monday, 1 May 2017

Sharing my Addisons story with medical students








In April 2017, I was invited by Endocrinologist Prof Richard Ross to share my Addisons Disease story with the 2nd year medical students at the Medical School at the University of Sheffield. Prof Ross was presenting his Endocrinology lecture on Circadian Rhythms and Adrenal Insufficiency. I first met Prof Ross in October 2015, when I was newly diagnosed with AD and was still very ill. Prof Ross really helped me by tailoring treatment to maximise my recovery.

I have to admit, I was a bit anxious about speaking to the huge group of medical students gathered in the lecture theatre. However talking to Prof Ross beforehand and preparing together with him what to say was helpful. Before delivering his lecture, Prof Ross told students how very important it was to listen to patients before introducing me and asking me when I became unwell and how was my journey of diagnosis and search for treatment. I shared my story of being misdiagnosed in 2015 by several health professionals while being very ill and near death. I told students how my Mum, a retired GP in Czech Republic, recognized the symptoms of Addisons when I arrived to visit her in a very poorly state after a long journey. My Mum took me to Czech hospital and, after tests, I was diagnosed with Addison’s Disease and began the treatment. Prof Ross asked some more details to clarify the progress of my treatment and I had also opportunity to introduce students to the Addison’s Disease Self Help Group (ADSHG) and explain how very much support I have been receiving from the group.
Prof Ross invited me to stay for the whole lecture and I found it really fascinating listening to the talk. I was really moved when I heard how Prof Ross kept coming back to my story through his lecture and used examples of mistakes or omissions made by healthcare professionals to emphasise to students what really mattered and not to miss any critical signs and symptoms of Addison’s. I felt very encouraged and empowered hearing Prof Ross emphasising the importance of listening to patients and carefully assessing all the symptoms with awareness and understanding of Addison’s Disease. Prof Ross also mentioned about the important role of ADSHG and the importance of working together with patients
Prof Ross told me that, through hearing my story, students will remember better the importance of the right diagnosis and the importance of not missing symptoms of Addison’s in whatever medical role or context they would work. A few students came briefly talk to me after the lecture and I handed out ADSHG flyers.

I really enjoyed talking to students and hearing Prof Ross’s lecture. I would be happy to come back again next year to talk to the next intake of medical students as I am passionate about increasing awareness of Addison’s Disease.




Tuesday, 6 December 2016

Addisons Group meeting December 2016

On Saturday 3rd December 2016 we had our second meeting at Sheffield. We met at local Cafe and talked about our Addison's stories, about Medical ID and many other Addison's topics. Nice to get to know each other little bit more. We decided that next meeting could be in cafe again, probably in March 2017 and after that following meeting could be at the hospital, either with Endocrinology nurse or with Endocrinology Consltant who offered us to help if we needed any help.


Sunday, 9 October 2016

Addison's Support Group

Last week we have had our first Sheffield meeting of our Addison's Support Group. 
It was lovely to meet for the first time in person few other people who have Addison's and share our life/diagosis stories. 
And Endocrine nurse Vicky was excellent teacher, teaching us all how to use emergency Hydrocortisone injection. 
We have planned our next meeting for December 2016.