Thursday 27 September 2012

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


Tuesday 11 September 2012

Half-life...

 There's something else cluttering up the big table at HH HQ, it's shiny, it's light and it's helping me get about right now!
 It folds up! Joining the 'old lady grip mat' enabling me to open jars without the aid of a butch neighbor...
 ...and the packets and packets of pills I am now on which nestle in my felted handbag.
I resorted to using a stick after waking up at 2 am on Tuesday with pain in my hip that rendered me unable to move without crying out. Like a knife being plunged into my already aching joints and then wiggled around.
 When I tell people that I'm in pain all the time I'm pretty sure that they don't really believe me. Unless you ever have been it's hard to imagine. 
I had my first meeting with the new consultant last Tuesday where he told me that the recent anti-ccp antibody test had come back as a strong positive (it's 199, anything over 59 is a strong positive) and is the first time there is actual proof of inflammation being present in me. Up to now there has been nothing, no rheumatoid factor and even I started to wonder if I was imagining it all...hearing this news was a little like little bombs going off in my brain and then landing with a thud in my heart.
So...although it's not a nice result at least it's an indication and with a referral to the pain clinic in sight, tramadol is taking the edge off right now but I've now been warned I will almost certainly never be without pain again. 
Although the x-rays of my hands show no erosion present (which is good!) and there are signs of soft tissue damage in my feet so I'm to have an MRI too. I asked Fella what having an MRI was like he replied 'boring'...he's had two!
 I've titled this post 'half-life' as that's how it feels right now - if I take enough tramadol to be comfortable I fall asleep, in the middle of the day, sitting up...I can't wear nice shoes like the gorgeous examples pictured above and as my feet become more misshapen as time goes on the choice of footwear is becoming more and more limited.
 My hands hurt all the time, I yearn to make bread - feeling the squidgy dough between my fingers...
 ...I'm fed up because I lost my grip whilst holding one of my favourite glasses. 
 The reactions I have had from people I know and who I have told about my arthritis since using my stick have opened my eyes to the fact that very few people understood. I've had reactions ranging from 'been dancing on the tables?' I wish....and 'what have you done now? 
I've done nothing, it's the cells in my body which are busy right now...
So, if you see me stick in hand and smiling, it's my brave smile, the one that stops me crying.
I hope to get the real one back soon and the other half of my life back, the one where I can get up out of bed without fear and strong painkillers. The one where I don't have to decide between having a bath and cooking a meal...both of which wear me out!
Nx

PS. After explaining the reason for the stick and arthritis I get a lot of 'head to one side' stuff!