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.





Saturday 23 July 2016

Being thankful for being here and now

A year ago I was very ill, getting more and more ill each day without knowing what was wrong with me... I lost lots of weight, I was extremely weak and I had all the symptoms of Addison's Disease. 

However, neither my GPs or hospital doctors noticed that all of my symptoms indicated Addison's Disease and instead suggested my problems were caused by my Hashimoto's Hypothyroidism and kept increasing my thyroid medication.

I am so thankful to be so much better now, a year later, thanks to my Mum, retired GP who saved my life by recognizing Addison's Disease symptoms and taking me to the hospital at Czech Republic where I received the right diagnosis and treatment.

Here is my Addison's story and paintings at
Story of creativity and Addison's Disease 

I was just looking at some photos from the last summer and lots of memories came back to me...

Here is a photo with my lovely younger brother Tomas at Prague Airport in August 2015, 
the week after I started medication for Addison's Disease. 
I was still very ill and weak then,walking with walking stick, but glad to be alive.  

And I am adding photo with my brother from May 2016 when I visited my family on 2nd anniversary of sudden death of my Dad. 



Year 2014, when my Dad died, was year of many challenges.
 It was probably during 2014 when my Addison's Disease began quietly develop without me, or anyone else noticing. 
Looking back, I can see that I had many symptoms of Addison's Disease already, but thought it was just my Hashimoto's Hypothyroidism making my life difficult and I kept asking GP to refer me to Endocrinology.



And here is a photo with my husband and daughter in August 2015 at Prague airport when I was still very ill, but already getting treatment at Czech Republic during our holidays
I was for the first time travelling in the wheelchair through the airports as I was too weak to walk. It was really eye opening experience for me... 


A year later, July 216, I am still learning many new things on my Addisonian journey, especially new and challenging learning about how to cope with hot weather. 

I very much appreciate support and advice from online Addison's support groups.

And I plan to start support group for Addison's Disease patients in my UK home town, 
with the help of excellent Endocrinogy nurse Vicky.

I am happy to be alive, enjoy each new day, even when facing struggles and challenges. 

It is a challenge to face situations where my Addison's Disease becomes a barrier and my other invisible disabilities make me feel more disabled, but I try to be positive and hopeful.



Painting and creativity helps me on this journey. 



And my lovely family helps me very much too. Here, our wonderful daughter is making rabbit ears for me, to help me not to feel too serious about the life :)



Thursday 12 May 2016

My learning

Today I had very helpful appointment for blood tests with excellent endocrinology nurse. 
And I was able to practice under the guidance using emergency injection, firstly injecting an orange and after collecting some courage, I injected my leg as well for practice. 

This is really huge success for me as for years I suffered from needle phobia. I feel so much more confident now that if I need inject myself with emergency Hydrocortisone injection, I would be able to do it. 

Big,big thank you to lovely nurse V. :)





Tuesday 3 May 2016

Painting animals

On this blog I mostly  paint, to express my journey with Addison's Disease. I was diagnosed in August 2015. I am still learning a lot and I am very thankful for support available from support groups for people with Addison's Disease.

I have been reading about support dogs for people with Addison's Disease on several websites and groups. I know that at the moment I am well and I do not really need support of support dog. 

I enjoy being with animals and find being with animals really calming experience. Our 11 years old daughter with Aspergers loves animals too. I have done lots of reading about positive and therapeutic impact of animals on chidlren and adults with autism. Unfortunatelly we are not allowed to have any pets at our rented house. This is why we try to visit with our daughter farm that is nearby or to visit friends who own dogs and cats.

As I love drawing and painting, I began painting some portraits of my favourite animals recently :)

Here is link to my new album with animal portraits: