Well, tomorrow is d_day. I had my third liver biopsy on 16 July and should get the results tomorrow. I am expecting a resumption of steroids and an increase in azathioprine. I have only been off steroids since March, having been on them solidly since diagnosis in September 2013. I have only lost a stone of the two stone the drugs made me gain. My skin has barely recovered from steroid damage,and I may never recover from having developed fibromyalgia due to the steroids buggering up my sleep!! I could so do with them saying it's all a mistake and the fibroscan was inaccurate!!

Well it's been months since I last wrote this. Things had been going well. My liver blood tests have been in normal range for months, and I have finally learnt to accept this disease, and all that goes with it. I have also been diagnosed with fibromyalgia....but that's another story. Today I saw my consultant and had the rug pulled out from under my feet. I had thought that if my bloods were in range then no more damage to my liver was occurring. What I hadn't realised (or ever been told) was that all the bloods show is how well the liver is functioning. They do not show what damage is being done to the liver itself. However, having a fibroscan does show whether or not fibrosis is present. A normal healthy liver should not score above 4, mine scores between 9-11. This means I have fibrosis, and will now have to have another liver biopsy to see the extent of the dammage.
I feel like all my markers I have been following are gone. The bloods do not tell the whole story, I feel conned and confused. I also feel terrified of the biopsy as the last one was so painful. If the biopsy shows what the consultant suspects, then she will begin to treat me far more aggressively. This means my Azathioprine will be increased.....the drug I hate most with the most side effects.....

Well, am now signed up for JSA. All I have to do is look online 3times a week for a job within 5 miles of home, the job has to be no more than 2hours a day, and have regular breaks. Oh , and i have to be able to sit down too......don't think there will be many of them around.....

Hooray!! At last , recognition that I am unwell. Today I got the welcome news that I will be getting paid personal independence payments (pip)!! It's not a lot, but am truly grateful for it. The idea is, that as someone with a disability, we have expenses to pay that other "well" people don't; i.e frequent trips to hospital, hospital parking, prescription charges for so many drugs etc. It will make a big difference.....at last something positive to say!

I really don't know where to start. I was diagnosed Sept 13, finally lost my dream job in Aug 14, and had been on employment support allowance (£70 per week) from March 2014. This benefit is only paid for a total of 12 months, so was stopped in March this year. When you are put on this benefit due to illness, you are supposed to have a "health assessment" within 13 weeks of starting it. Atos, the company responsible for this, did not do my health assessment until 15th May this year (2 months after the benefit ran out!). This week, I recieved the report from them, that says that I am fit to work, and should start looking for a job straight away. Apparently, the "work coach" at the local job centre will tell me what work I am able to do. Only one problem, I remain signed off as unfit for work.....because obviously (to most people) having a life long chronic disease, that depends on complex medication and monitoring, means I'm not fit to work. I am intrigued to know, what job I can do which will allow me to
1 only turn up on days when I am able to get out of bed
2 let me have a two hour sleep every afternoon
3 let me drink/sit/stand/go to the loo whenever I need to
4 take time off for blood tests weekly, hepatology appts liver biopsies/scans bone scans/ eye hospital appts rhematology appts etc
5 take down phone messages incorrectly (due to brain fog)
6 burst into tears due to pain/frustration/anger at the whole thing
7 rest my oedematous legs whenever I need to?

Any suggestions/offers greatly received.

I shall, of course be requesting a reconsideration, and if still unsuccessful will appeal. The trouble with this condition is, hardly anyone has heard of it, research is limited as so few of us have it. I feel like I am constantly having to justify my situation to complete jobsworths . As if coping /living with it isn't enough, we should not have the added pressure of constantly jusifying it's effects.
I really don't see, why having worked and contibuted for 30 years, I should have to face this indignity.

Can't believe I haven't written anything since January! Thats not to say that nothing is happening, it's just all become such an effort to stay positive, I didn't want to keep writing such negative stuff. Thought it was better not to write at all. However, today I experienced one of the worse times since diagnosis. I went for an appointment at the Eye Hospital in Plymouth. I was referred last year as the steroids had caused my eye pressures to rise, so they wanted to monitor in case of further damage. I had seen my own optician a few weeks ago, so already knew things were still not right. Today, they confirmed that pressures are still up. But that wasn't the problem. The doctor I saw asked why I was on steroids. So like the idiot I am, I told him, I have auto immune hepatitis. His response? "Oh dear" in a rather grave voice, so I thought, blimey, he's actually heard of it! But no. The next question was "did you have a blood transfusion ?" Me.."No...it's an auto immune condition". Him..."well did you inherit it?" Me.."No...it's an auto immune condition, my immune system decided my liver was an alien and began to kill it". Him..."well were you a heavy drinker then?" Me...." No....it's an auto immune condition" Him..."I know...but I thought maybe drinking caused it". Me....silence....I knew it would be tears or explosion. Him..." do you work?" Me..."not anymore...I can't because of my condition" Him.... "well what did you used to do? Me.... I've been a mental health nurse for 30 years. Him.."well never mind,  you know from your nursing that things will get better in the future". I couldn't speak anymore to explain that it is a chronic life long condition that I will never be free of.I cried all the way home.

Well, the gp shouldn't have put me on Meloxicam. As I thought, I'm not supposed to have ANY nsaids, and my blood pressure was high. Hepatologist was horrified. All the gp had to do was check with them first, instead, he persuaded me it was safe. I will never take any presciption from the gp again unless they check with the hep team first. So, it's back to paracetamol/codeine or tramadol if I want pain releif, or nothing if I want to stay awake. Liver bloods thankfully still normal and negative for reumatoid arthritis. So the pain is "just the AIH"......thats ok then isn't it?