Harvest

It's autumn and that marks three years since I first visited the rheumatology department at Ipswich Hospital. If they ever move the pictures that adorn the corridors around I'd be wandering around in there forever! I have absolutely no sense of direction...up until May this year I have been every six months since that first appointment. Now I seem to be up there every week, recognizing the number of the hospital on my phone despite not entering in my contacts list.

Reading through my notes I see that I was presenting classic symptoms of Rheumatoid Arthritis which through most of the last three years has been raging through my body causing pain and inflammation - my feet were described as 'little trotters' once as they were so swollen...

I know it's hard for people to understand that every part of me hurts most of the time, I wear splints on my hands when my thumbs need support not because they hurt more than my feet, knees, back or hips...it is quite upsetting when people assume it's only the part of me I'm supporting at that moment whether it's with splints or a stick. This happened yesterday, last Friday, last Wednesday...a very good friend assumed that just because RA is now thought to be on the scene it's somehow, all of a sudden become so very much worse than when it was thought to be PsA. The usual suggestions of a change of diet and Chinese herbal supplements then followed....it's hard at the moment not to cry out and show people just what it's like to be permanently tired and in pain.

I know that they are merely trying to help, to try and find a quick fix, to get me back to how I was before this happened...

The programme on Channel 4 called 'Food Hospital' featured RA in it's list of conditions that can be cured with food - I'm not denying that there are some conditions that are affected by food but trust me if I could run again if I never touched another crumb of bread then do you not think that I would find the will power to resist?  Programmes like this, articles in the newspaper all citing lower ESR levels as evidence of a particular diet working give false hope to all the well meaning, thoughtful people around us.

My ESR levels have never been high, have always been unremarkable and yet there is no denying that there is always inflammation there. Celebrex has become my favourite drug - hope that they keep me on it, the swollen feet have gone down, my fingers no longer resemble sausages. The pain I have now is not from inflammation as the damage has been done, the bones are crunching against each other and I remove myself from that with Tramadol.

It's breakfast time, I'm here at the kitchen table, waiting for the pills to work and trying not to think about food, the Tramadol has taken away my appetite and as anyone who knows me in real life or via Twitter I live to eat, love to cook and feed people. The Fella and I are taking it in turns to cook nice healthy meals for each other, my parents cook for us once a week and we're struggling through...

Nic x

PS. I get the disc with Friday's MRI scan on it today! The really helpful lady in Diagnostic Imaging has posted it out to me and the nice lady at PALs is trying to find out why the Radiographer's notes were removed from my X-ray images...two painful steps forward and then one back!

MRI

Last Friday I had an MRI - I had been told on the phone that it was my hands and feet that would be done and I had to decide whether the left or right in each case was the worst affected.

This amused and confused us all and many a happy hour has been whiled away (I'm currently taking  a LOT of Tramadol!) deciding which side is worst - left hand and foot both look pretty grim but I have a lot of pain in the right at the moment...

Having been given a timescale of around 'one and a half hours per bit' during the same telephone conversation with the MRI reception I arranged for my folks to drop me off, go to do their shopping and pick me up around three hours later. 

Fella also helpfully told me that when he had his ankle done he just had to stick his foot in with the rest of him outside the machine....so I took some knitting for the feet bit and a book about knitting for the hand bit. 

Turned out it was only my wrist and hand that was of interest after all and as for 'just sticking my hand in.....' that bit was also wrong - de-bra'd (their term, not mine!) and lying face down in a 'Flying Superman' position the whole of me went in! The noise was erm....*noisy* if you have never been in one or accompanying someone having one it's like having roadworks 6" from your head. As you enter the room there's a 'thud, thud, thud' as there is already a background magnetic field - so you don't get a shock (I assume) then donning an impressive set of headphones (not unlike the Boy's Wharfedale's!) the technician warns you that the big noise will start and my goodness...it certainly does and with a minute's break at half-time for a contrast medium to be injected through an IV that is how it is for about one and quarter hours! 

Lying perfectly still and silently, hand strapped into position in a tube with a hammer drill working away...not the best of Fridays but if it gets me some better treatment then totally worth it!

I've just spoken to the MRI department and they say it's already been reported and sent to my new consultant. I'm hoping they will send a disc out to me too, they will accompany my x-rays which I have now discovered are missing their notes!

Oh, and I also had a chance this week to contribute to a book being written about arthritis and how people cope with being diagnosed with a chronic, painful, incurable and difficult to treat condition. The author is now adding another chapter about working with the condition. 

Actually diagnosis is a huge relief as it takes a long time and some of the tests can show false positives or negatives. Diagnosis can direct the treatment in a more productive and positive way preventing a person from becoming permanently disabled...it can be comforting to be able to put a name to the pains that have plagued a person, the fatigue that is invisible to others...

Nic x

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

Halfpenny Home Blog!

You can find out what I've been up to here www.halfpennyhome.blogspot.com
See you there! Nic x