Saturday, 19 October 2013

Well I haven't written since Tuesday........so here's the latest. Weds 16th was a good day. Had it as a gentle rest day, made homemade healthy soup, flapjack and generally pottered. Mum visited in the afternoon and we just chilled. Apart from soreness in the liver area (or upper right quadrant as other AIH sufferers call it), generally felt ok. Thursday was my Birthday! Was woken by a text from a friend at 6.30am to wish me a happy birthday. However, this meant a quick nip to the bathroom, and on the way back I managed to stub my little toe on my laptop which I had left on the floor the night before. Lesson learnt .......... If you don't want to break your toe at 6.30 am .......don't leave things on the floor!! Yes, the pain was so bad I was clutching my toe on the bed waiting for it to abate, when I promptly then got cramp (thank you steroids) in my hip.....causing much hilarity and tears VERY early in the morning. Not the birthday start I was hoping for. The toe remains black and I can only walk in flip flops (not good in Cornwall in the rain when you have 5 dogs 2 donkeys a pony and 3 customer dogs to care for boarding at the house). Poor M has had to do everything for the last 2 days. It has however, taken the focus off the AIH a bit, so I guess that's good. Diet is alternating between healthy fruit/veg/nuts and unhealthy chocolate/cake puddings (well it was my birthday). I have had to take paracetamol for the toe/foot which is not great but it's been so sore. Steroids are now down to 15mg since Tuesday. Bloods were done yesterday and I am to attend clinic on Monday for review. No obvious side effects still from azanthioprine and I'm 12 days in so hopeful, fingers crossed the bloods don't tell a different story. Have been reading a good book by Dr Melissa Palmer on hepatitis and liver disease. Had to get this from America, and although a little dated is really "user friendly".It has a complete chapter on AIH and lots of guidance on diet and managing the condition. Next book waiting to be read is on the "Auto immune epidemic".....looks a bit scary and seems to basically say that unless you live in a complete bubble you are at risk of developing an auto immune disease due to environmental factors etc..can't wait. Mood good, less labile (? due to steroid reduction) Have stopped fretting about going back to work, what will be will be .weight stable (although if I'm honest, I had a feast of fruit loaf and peppermint tea at midnight last night so I guess that won't help).

3 comments:

  1. So glad to hear things are going well, I am still on the high doze off steroids and my blood results don't seem to be comming down, getting a bit scared now off what lies ahead but trying to stay positive and put my trust in my consultant, tried phoning on Friday to Speak to her for some advice but she never got back to me and she is on hols on mon as is my own gp, so frustrating when you need your mind putting at rest, secretary said to phone back Tuesday if I hadn't heard and she will chase it up, oh well not much I can do but keep taking the tablets and wait. Keep up the good work with your blog x

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  2. Have you seen the autoimmunehepatitis support website? It has a great forum to share/support others with AIH its really positive and helpful. Where do you live, which hospital are you under? Try and stay calm and take each day as it comes............I know.......not easy!

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  3. Hi I live in Scotland, just joined the support website you mentioned so thanks for that it looks really good and your right I do need to calm down getting myself stressed is not helping,

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