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Some time ago in 2005...

I was settling in my new job in London.Working in a coffee shop wasn’t very new to me,but the language and country was a big change.It was not easy in a first few months,i was missing my home,family and friends.I felt stressed all the time.After couple of months it did get easier,but i noticed my appetite decreased hugely,i lost a lot of weight.Along came other symptoms like yellow skin and eyes,itchy palms,legs and arms.I was itchy to the point i wanted to rub myself in the carpet like a dog!!And few other symptoms wich AIH and PSC people definitely know,but they are TMI so i don’t want to say them loud.I was turning in to a Marge Simpson(exept my hair was still blond😂)I was weaker and weaker everyday,it was so hard in the morning to get up from the bed.Despite all this i was still going to work.Until coworkers started to look at me suspiciously and customers were afraid to take their orders from my hands(how weird i thought i was just nicely tanned🤪).But the most silly thing was that i was thinking my eyes are yellowing from standing next to the grills all day😱😳😂And wait for it...I bought eye drops (oh sweet naive silly girl) and was hoping it will help😂I am laughing to this day that i was trying to treat my autoimmune diseases with simple eye drops (why i was thinking like that i don’t have an idea).One day coffee shop manager called me in his office and suggested i’d better go to hospital as i look not good and he thinks it might be contagious!It was mid December,Christmas mood everywhere,but not for me obviously.I went straight to A&E and lots of blood was taken.My liver function was all over the place and i was admitted to hospital.I didn’t understood what was going on at that time.It was so scary,i cried all night😖

Next morning doctor came,he started to talk with the words i never heard before.Liver function,biopsies,endoscopy,MRI scan,autoimmune hepatitis...

“What hepatitis?!What do you mean!Where i posibly could caught it?Nonsese,what he is talking about!!”shock,fear,deny,a roller coaster of emotions was spinning in my head.

Few days after i was discharged with lots of upcoming appointments and a drug wich you definitely know-Prednisolone!And it was a very high dose(i think it was 80mg).Dr told me about side effects and about moon face from it🤯But boy oh boy i never ever even couldn’t imagine that it will change my appearance completely.I was different person,i really was.I couldn’t look at the mirror,it caused me huge emotional distress.Every morning i was waking up rounder and rounder,acne with nasty yellow spots covered my face.I put a lot of weight,to be exact from 52kg to 82kg!30kg!I think that’s how much a 9-10 years old child weighs.Ok so back to diagnosis.No matter how much i hated prednisolone but it did it’s job amazingly quick.In few weeks I’ve got my energy back, my skin and eyes were returning to normal colour. After biopsy autoimmune hepatitis was confirmed and unfortunately with cirrhosis already. I couldn’t get this.”How cirrhosis is possible in 23 years old girl! I am not an alcoholic!”I was so embarrassed from the words "hepatitis" and "cirrhosis" that I was ignoring the most important word "autoimmune"!We all know,that many people still thinks that cirrhosis is happening only from alcohol.What we can do,just try to correct and educate them🤷🏼‍♀️As before i was diagnosed,i was thinking the same,unfortunately 😫I was still saving for the laptop,so Google wasn’t accessible. And there was no smartphones at that time(wow I felt like from the dinosaur era now😂). But I was very lucky with my doctor. Great man with a good sense of humour.He diagnosed me quick and put me on the right medication(after the pred stabilised me i was put on azathioprine and Urso).He explained about the disease well, the problem was that I didn’t want to accept the fact that this disease is for life! I pretended I am well and healthy and to be honest,sometimes i still do this now.I know i have it,i learned to live with it,but i just don’t want to think to much about it.I want to be "normal ".I don’t want anyone would feel sorry for me.That’s why not many people knew what I was going through. Good luck for me now to keep my secret ha ha! But I decided to create this page not to shout out “look what diseases I have",but for people like me and you. Living with invisible disease it is challenging at times. I understand you and you understand me.

P.S.about azathioprine,i felt nauseous at first,but it settled in few weeks.i was on quite a big dose of 250mg for many years.It was reduced later to 100mg.

Urso is the most innocent drug ever (for me),i never felt any side effects from it.

P.P.S.In this picture you can see how i changed from pred.It took me lots of courage to put this photo to a public page,as now anyone could see it.But it is how it is,it was me.On the left picture me just a month before diagnosis.I can see now how orange i was!So basically first was skin,when the eyes,and last the itchiness and others.Sorry for the quality,it was 15 years ago and we used very basic camera🙃