Lichen

 It was my birthday at the end of August and my lovely friends are treating me to one of Rachel Dormer's porcelain workshops - I love making the little 'pinch pots' Rachel is also a very interesting person and I find it so relaxing. I won't be able to do it until (I nearly typed 'unless' there but realise that is not being very positive! Struggling with that a bit right now...) I can get this recent flare under control. 

Usually I grin and bear it but yesterday my left leg refused to bend at the knee - bit worrying as the old 'ritis had been confined to hands, feet and occasionally my hips, back and neck. I haven't had so much trouble with my knees swelling since referral to Ipswich Rheumatology in 2009...

 I even asked my mate Bob to shut up my hens last night even though I had planned to clean the poor things out before bedtime, but by the time I sat down I had completely 'locked up'...what to do? I ended up crawling up the stairs, dosed up with Tramadol and going to bed. It's a bit better this morning but after the hip pain I had on my last visit to hospital I'm starting to worry more and more about how much damage this is doing to my joints.

I finally have my x-rays! As part of the complaints procedure about my treatment at the hospital I requested my x-rays and blood test results - they sent my notes....I didn't even ask for those!

I had some x-rays done in 2009 and then again this summer and although there are no signs of bone damage there were 'changes' and I'm to have an MRI tomorrow 'to see what is going on in there' as my new consultant put it!
Why the complaint? Well my very smart dad recommended I write a timeline of all my treatment from referral to now in order to illustrate accurately what medications I had tried as I tend to get a bit worked up and upset about it all. Whilst doing this I realised that I probably hadn't had the best care and that things could and should have been done differently...I asked PALs to approach the Rheumy team and ask a few questions, one was why I hadn't had the anti-CCP test earlier as the NICE guidelines state that that test should be considered next if a negative Rheumatoid Factor result comes up. My ESR levels were raised apparently...when I pointed out that I have unremarkable blood test results and that was why the test was done the PALs adviser suggested I write a formal letter of complaint...the complaints department move fast!

Unfortunately I had none of my records in time for the meeting but they did agree to change the inaccurate notes about how often I saw my old consultant. The rest of my concerns were merely either met with a 'we are very sorry' or 'rest assured we have learnt a lot from this'...

Hmmm, the nurse who logged that she had rung me back during the time I was bleeding heavily and in terrific pain thinks that 'on reflection she may have dialed the wrong phone number...

My notes are being reviewed by my new consultant as to whether my treatment should have been different. 

It makes me cross that a test that at £30 is considered to be too expensive to do until x-rays show irreversible damage yet a face to face meeting with two healthcare professionals (one of which seemed to know very little about inflammatory arthritis....) for an hour and a half can be arranged at very short notice. It also makes me angry that I may have taken their time away from someone who is suffering as much and maybe more than myself but I can't go on like this for much longer!

Lichen for dyeing! Fab colour!

Scraped from the tree whilst damp is easy to remove but when it dries it's rock hard and nigh on impossible to get off!

Rheumatoid Arthritis caught early and treated properly can sometimes be knocked into remission - this requires a lot more than the minimal level of care that the nurses at the meeting admitted I had appeared to have received. 

Knowing that they have benefited from my being in pain for all this time and limiting my life does not make it better

I was lucky enough to have a friend take me along to the meeting last Friday which was harrowing but tomorrow I'm on my own in there...I will have to do some lye calculations for Friday evening's soap making workshop or think about knitting patterns in my head!

I still have yet to decide which foot or hand is worse as they are only doing one of each...this is a much harder decision than you may think - I'll consider it over breakfast which I can't really face yet as the tramadol has reduced my appetite - maybe I'll manage to lose a bit of weight!

I hate being so grumpy....it's taking all my willpower to not get cross when people suggest Chinese herbal crap, gloucosamine or a radical change in diet will help me - I know they mean well but reading a couple of paragraphs in the paper about it doesn't suddenly make you an expert!

I will return to being my usual jolly self soon - it won't beat me, I'm just currently recruiting a better army before the next battle!

Nic x