New Distractions!

 It was my birthday back in August and it's always a bittersweet time of year for me as usually the Rheumatoid part of my pain is at it's highest point during the summer and although I really do enjoy the company of friends and family I struggle to keep up with it all.

Since starting on Humira I have had a slight improvement in that sort of pain and my bloods have come back as OK but the joints that are already damaged really, really hurt and that's all the time - 24/7...Tramadol and Celebrex help a bit but sometimes the pain switch is turned up to *11* and drugs don't touch that pain, I try to keep busy and distract myself as much as I can. I am (of course) limited by the 15 minute thing*see end of post*

I LOVE chickens and finally family and friends gave in and agreed, indeed INSISTED that they get me some new chickens for my birthday!
I have two VERY old ladies in my flock so we get very few eggs at the moment and as those two ladies have lived twice as long as they are usually expected to I'm probably going to lose them over the winter.

The two hens at the top of this post are Skyline Hybrids and there's a 70% chance of getting blue eggs from them so I was hopeful of getting maybe one that laid blue eggs but *tada* yesterday there were two lovely pale blue eggs in the nest box!

Lovely surprise from Bramble (left) and Rose (right) who are fitting in brilliantly!

Chickens are funny old things and as disease spreads quickly through a flock I persuade the Fella that we HAD to get the new girls from a man over at Little Bealings who had sold me my original old girls and it was well worth the journey as in addition to Bramble and Rose I also chose two younger hens, a Cuckoo Maran and a Wheaten Maran, yet to be named and currently occupying the folk's garden while I sort out their tempory run and house that they will live in until they're a bit bigger...

 It's thanks to my lovely friend Jenny Tidman that all these extra hens are joining us as she and Mr T have helped us out with some extra housing. 

All this was organised before, during and after the many felting workshops that Jenny teaches for me at HH HQ. Until now Rachel did the Wet Felting Workshops and Jenny did the Needle Felting ones but as Rachel is no longer teaching the first of Jenny's Wet Felted Bowl workshops took place last Friday and I made a bowl - I didn't think I'd manage it because my hands have been so bad lately but with after being reassured that I could stop and restart it whenever I wanted I had a go!

With a very gentle approach to the technique I didn't find it as tiring as I'd feared and I think everyone was pleased with what they produced - I will include the finished pics on the shop blog www.halfpennyhome.blogspot.com as they were all still drying when they left with the textile artists!

 It's always interesting to see how many interests 'overlap' and how many things creative people have in common with each other! We tried out a couple of new recipes at the latest Soap Making session and one of them is a gardening soap - a soap specially made for gardeners!

The recipe was adapted from a book I bought at Victoria Bells's bookshop in Framlingham and also gave me the basis of the recipe for the soap below - Calendula and Chamomile which includes Marigold petals from the allotment.

Beautiful!

I've become more and more interested in including plants from the allotment and hedgerows in some of the crafts I enjoy teaching, there is so much to learn about them! We already make our natural dyes from locally grown plants and future workshops will include a Lavender, Lemon and Nettle balm which is supposed to ease inflamed joints...

Nic x

*as RA patients we are constantly told to 'keep moving' 'exercise' 'rest' 'don't stay sitting for too long' 'don't stand for too long' 'rest' 'don't do too much' 'try to do as much as you can' 'rest that knee/foot/ankle/hand' 'don't stop using that knee/foot/ankle/hand' *sigh* I call it the 15 minute thing because if I do anything for longer than that without changing position I have intense pain and stiffness...

Pain management and the art of allotment maintenance...

 I adore food, as I've said before - I love to eat, cook, grow and serve it up to people! Browsing through seed packets and planning what to sow next is one of my favourite things to do and now that we're doing the 5:2 fasting way of eating it's got even more interesting! 

We've been doing the menu planning thing for a while and it has helped reduce waste and save us money, it also shares out the cooking, I can't cook every day - RA makes you constantly choose between cooking a meal, having a bath, washing hair, cleaning a room, shopping, going out with friends...etc. factor in work, blood tests, filling prescriptions, hospital consultations and drug deliveries and you can see that it can be a tiring old business and there's also work!

The 5:2 fits into this well as we do Monday and Wednesday as a fast day, last night we had salmon and a kind of savoury rice using cauliflower which was pretty awesome. He does the food on Wednesdays and Fridays, I do Mondays, Tuesdays (when my folks visit) and Thursdays, ma cooks for us on Sundays! Fella is also in charge of Saturdays...

 The Fella loves a pie in any shape or form and I love making them although he has begged me not to put quite so many courgettes in things this year! 

I didn't grow courgettes last year, or the year before, or the year before...I found a plant marker dated June 2009 at the allotment a while ago and it was for the Welsh (or everlasting) Onions I grew from seed that year, one of the last things I remember doing before I was ill. I'd planted up a fair bit of the plot with fruiting bushes and asparagus when I was fitter and they could look after themselves!

As the likelihood of my actually having RA came to the fore everyone said I should give up my allotment, too much work for me to keep on top of as well as trying to get control of a painful and difficult to treat condition. 

I didn't listen and over the years I HAD to go and feed my chickens, sometimes taking 4 hours or more from waking to leaving the house, the allotment is about a mile away and I used to hope I wouldn't see anyone as their enquiry as to how I was feeling would make not crying because of the pain impossible.

There have also been some funny moments like the time I took codeine and forgot to close the door to the run! Luckily I have some very forgiving, long suffering and nimble allotment neighbours who were excellent chicken catchers!

A combination of generous growers, established fruit bushes and friendly chickens kept my spirits up, and my interest in growing er...going! 

Every year I would order seeds optimistically thinking that this year I would be more in control of the pain and able to actually plant things...the pile of seed packets got bigger and expiry dates passed.

 Last year some good friends of us both took over part of the allotment, about a third of it. This made a huge difference and as they were very enthusiastic due to the fact that they had no garden at home they did overdo it a bit on the courgette and spinach front, hence the courgette ban!

 They farmed the area for around a year before they found a house nearby that has a huge garden! 

I've attempted to keep on top of the part they cleared by changing the way I do things - I don't dig, can't dig and my hands can't grip to weed so I've been covering things with mulch, tarpaulin and by growing squash plants around and between the brasiccas.

Little and often also works for me although recently I have managed a couple of hours down there, a lot of it sitting and resting.

Timing my medication so I am as pain *free as I am ever likely to be and where possible bringing something back each time so I have a reward.

This appears to be working for me thus far, I'm also indebted to one of my knitters who gave me the tip for blackcurrant picking - prune the fruit laden branches and take them home where you can sit comfortably picking away instead of hunching over the bushes!

Genius!

 When I think back to when we were producing Country Crafts I'm not sure how I managed to do it given that I was going through a pretty big flare at the time and although I hurt now from the damage in my joints a flare is how I imagine it feels to be hit by a car or bus! I've had horse riding accidents, been in quite a serious side-on car crash, had a burst appendix and given birth...but none of these come anywhere near it. All I can think is that distraction has gone an awful long way to help me get this far.

 Not plums, potatoes! Blue ones and they stay blue when you cook them...these were the Fella's idea, I had all but given up on the idea of growing anymore spuds but between us we just about managed it. He's become more interested in growing food since we saw tiny cucamelons on television one Sunday morning, I'll do a blogpost all about those gorgeous little babies soon, I promise!

 I'm still sorting out the kitchen since the floor was replaced in the summer, it's a work in progress but as the old one worked well for me and I spend almost all my time in the kitchen - I can't sit on a sofa, too low and I can't get up again without help as my hips and knees lock up, even help hurts as people hold my hands to help me and I feel awful asking them not too...so I stick with the comfy chair with arms and everything I need within reach!

 

 I've been dealing with some major pains in my feet, hips and hands since Saturday so thought I would go over some more positive stuff we've achieved recently as a big distraction!

Thanks for bearing with me, Nx

Spare time and the happiness scale...

 My little brother was 40 this year and had a massive party to celebrate, it was organised by my clever sister-in-law who runs an events company.

 He had a band playing 'The Kings of Leon Smith' ROCK and one member Luke is the plumber who sorted HH HQ's horrendous plumbing back in 2009 when we opened!

It was a great night, a great weekend really as my aunt and her partner came to stay and as she is also a knitter, artist and fanatical Bowie fan we had a lot to catch up on.

I did get a little sad a times as it would have been great to dance, I did risk a jig holding onto my sister-in-law incase my knees suddenly gave way and I joined my nephew behind the sweet table where we had a secret bop...but for the most part it was very much a sit down affair for the Fella and I.

 We did notice that there are rather a lot of beer bottles in the picture above and there was also some cracking food, mini versions of fish and chips. horseradish and mushroom stuffed yorkshire puddings and all of us adored the mini cottage pies!

 As the paragraph above illustrates we love food, growing it, picking it, cooking it as well as eating it and as both of us have become increasingly unable to be as active as we both once were (I walked, cycled and ran everywhere - did yoga etc. and the Fella was a footballer...) the love of food has taken it's toll!

 It's always healthy stuff, mostly organic a lot home grown like the amazing garlic I grew this year! But whichever way you marinade your salmon the age old problem of energy in versus energy out will always be there.

 We have regular weigh-ins at the hospital check-ups we have at least every six months, mine are currently every three...and the effects various drugs we're taking are having on our bodies is monitored closely and reminders about weight are uttered.

My new consultant is pretty wonderful, nags me about blood tests and listens to me.

My last appointment with him was a good one, this time last year RA/PsA were having an intolerable effect on my life. Each day was an endurance test from waking to bedtime, the happiness scale (a device used to measure the effect arthritis is having on one's life was set to one up from the bottom for me. 

It was noted by my consultant that I was coping with being ill much better now, due in part to better pain relief available to me and the Humira working a bit. As I type this I am literally limping towards Saturday's jab which I hope will give some relief for 4 or 5 days or so - 4/14 better days are definitely an improvement from 0/365!

I measured my illness on my own personal 'happiness scale' I'm growing stuff again, picking, harvesting and actually managing to farm my allotment! I've changed the way I do things, I can't dig or lift anything, can't kneel down so I adopt a strange 'John Wayne' style stance and hope to goodness I don't fall face forward as I inspect my brasiccas for caterpillars...a morning on the allotment is the best therapy ever! Last year as in the previous two I would be worn out after ten minutes...

So, the pain is still there but I've got better at handling it and now have the tools with which to do so! Just the weight issue now, the Fella's hips have been really bad and mine have developed bone spurs from prolonged inflammation and when they *lock* it causes a pain which actually takes my breath away!

Just one problem and it's a BIG one...

 ...I hate diets, the word, the industry surrounding it and the idea that deprivation is the only way. The only scales I have at home are the ones I weigh my fruit haul in!

So after reading some sciencey stuff about the effects of following the 5:2 diet may have on inflammation in the body I persuaded the Fella that we could give it a try!

Two days of very low calorie intake and 5 days of eating 'normally' = fewer inflamed joints? Sounds like a great deal to me!

 So far it's been a month and we like it, he jokes that I failed to tell him that it's probably going to be a life-long way of eating...but despite having to reduce his breakfast by one slice of toast he seems to be enjoying it, if 'enjoy' is the right word!

A plate of vegetables never tasted so good and we're both sparkling water addicts now - no marked effects on the joints yet but we'll be keeping notes and a watchful eye on those blood test results!

Just a beautiful picture of some yarn I dyed with turmeric, happiness in fibre form!

I'm now *blogged out* having posted here and on www.halfpennyhome.blogspot.com with the latest workshop list...time for some allotment therapy and some chicken hugging, best medicine ever...:)

x

I feel it in my fingers...

Ok, I hate the song but struggled to find a title for this post!

Not as jolly as a lovely recipe for a cake but then sometimes the less jolly parts of life come to the fore and a subject close to my heart (feet, hands and knees etc.) has reared it's ugly head again.

PIP

Anyone *outside* the DLA (disabled living allowance) world is forgiven for having little or no knowledge about the subject, why would you need to know about it? I knew nothing about it until a friend mentioned that I was having a lot of problems getting around and had I considered applying for DLA?

The clue is in the 'A' it stands for 'allowance' and it is a payment made to people who are disabled in some way, shape or form due to illness regardless of whether they are able to work or not. It can be used in ways to assist the claimant in leading as 'normal' a life as possible. We don't spend it on cruises and fast cars you know and the 55 page form is a beast to fill in...they don't hand out those Blue Badges willy nilly either!

Even though looking at me with my rosy cheeks, beamimg smile and positive outlook you wouldn't guess how much pain I am in but I can assure you I am and because of the life limiting qualities of Rheumatoid Arthritis I am a DLA claimant. I use mine to pay for things like:

 Good shoes that are very expensive but recommended to me by the healthcare practitioners I see for the management of Rheumatoid Arthritis. I have arthritis particularly badly in both my feet and hands. I can't just pick up a pair of shoes in the supermarket as my already painful feet would be in unbearable agony!

A tiny vacuum cleaner! 

Sounds rubbish but my old cleaner, a perfectly serviceable Dyson 02 (never throw anything away!) is far too heavy for my feeble wrists now and in order to attempt a reasonable level of hygiene at home a person does sometimes have the need to run a vac over the floor...

Pre-chopped veg, this and a food processor are the only way (unless I rope someone in...) I can really cook properly now as my hands and fingers are so sore! Even picking baby spinach leaves last week was a teeth-gritting affair! 

Cleaning Wipes

 Of all types...

Oven Cleaning

I've finally given in and admitted that I can no longer clean my oven myself - last time I did it, about a year and a half ago it took me a couple of days and I had to rest for a day after. I also have problems kneeling down - tomorrow my oven gets a really good clean by a professional company!

You would think I was fussy about the cleanliness of my home but really I am just very scared of becoming unwell - Humira leaves me prone to infections and masks the symptoms in such a way that it isn't obvious until the infection is quite serious! Factor in that all arthritis drugs have to be stopped while the antibiotics do their stuff and it's enough to make the most un-house proud person flick a duster around once in a while!

Reading through the guidelines to assessors of the new PIP (personal independence payment) it seems to me that people who accept the difficulties that having a disability brings along to the party are to be penalised for adapting and having a positive attitude towards life which is not the way a supportive society should be treating people who are already struggling to have some kind of life abeit a slightly, slower and stiffer one in my case...

I'll be back on cake recipes next time I promise!

Nic x

 

 

Rhubarb Flapjack Recipe!

 This recipe was inspired by a gardening book full of recipes for using up gluts of seasonal fruit and veg - a very nice book but some of the recipes are a bit off with quantities and timings IMO so flying by the seat of my pants I tweaked away and served this up to my knitting group...

 The knitters are cake experts and most Wednesday mornings the topic of food is to the fore around 90% of the time!

 The original recipe called for two pounds of the mighty barb and stated it would serve four persons WITH CUSTARD - that's a lot of rhubarb...eeek!

SO

eight ounces of butter

one ounce of sugar

nearly a whole small tin of golden syrup

went into a pan and left to melt together while I got

one pound of rolled oats

one teaspoon of seasalt

two teaspoons of ground ginger

together to which I added the molten mass of buttery sugariness!

Mixing it all together really thoroughly...mmm!

Pressing the crumbly oaty mixture well into a lined tin, the sort you would probably use for brownies...about two thirds of the mix will bank up the sides well (we need to keep that rhubarb in!)

I then added the 

one and a half pounds of rhubarb

chopped into chunks and stewed lightly with

one and a half ounces of sugar

 

 before sprinkling the rest of the oaty mixture on top and pressing down slightly and baking at around 150 C - you know your oven - mine looked done after around half an hour.

I cut the resulting bake into 15 pieces and there was none left!

ENJOY!

Nic x

*this is for all you Twittery Rhubarb Obsessives out there...*

The Listening Project

Yesterday afternoon 'The Fella' and I travelled into Ipswich to meet up with a twitter buddy who works for BBC Radio Suffolk - a bit different to our usual Sunday routine! We were to be part of a really exciting project being run by local BBC radio stations, Radio Four and The British Library....*excited face*

I had heard of The Listening Project through listening to snippets of some of the conversations featured on Radio 4 and thought it sounded so interesting that I was very excited to be asked if I would like to 'have a conversation' which would be kept at The British Library for future generations to have access to. Who to choose to speak to? I have a couple of friends who are also 'Radio Four Bores' and one in particular would be great to talk to but she lives too far away...the conversation needs to be half an hour-ish and it's supposed to be an opportunity to talk about things you may not have had the time or chance to do so before...choosing a suitable conversation partner is harder than you would think! 

I wanted the conversation to mean something, to be of use to people and not just a soundbite of the times we are living through - I wanted people to know how it feels to have an invisible disease, the obstacles sufferers have to overcome and how a thoughtless remark or comment can be very upsetting and that we don't 'just have arthritis' like old people have....hmmmm!

'The Fella' was less enthusiastic about being recorded talking to me...for a week he put forward more suitable (in HIS opinion!) candidates but eventually I wore him down and he agreed to do it...which just goes to show what a brilliant man he is!

We talked about a LOT of different stuff (not just our creaky bones!) but it was noticeable just how much both our lives are affected by Rheumatoid Arthritis - almost everything we do has it lurking in the background and believe me *it* makes sure we know it's there! The other thing I noticed was how incredibly strong and brave a person suffering from an incurable, chronic condition has to be and how much I admire 'The Fella' for doing this without fuss for 20 years, he has a 16 year head start on me!

We also laughed, we laughed a lot!

Couldn't have done it with anyone else really...

Nic x

What happens on Humira Saturdays?

 Well the only side-effects I am aware of is a feeling akin to being smashed in the face with a shovel but as that doesn't hurt as much as having RA does so I can cope with that! Makes blowing my nose and kissing the Fella tricky but then RA makes a lot of things like that tricky too...so having passed my assessment and being able to stay on Humira injections aided by a low dose of Methotrexate which helps to stop my body rejecting the Humira. 

Every other Saturday morning I get up and when I get the milk out of the fridge for my morning cuppa I also get out a Humira 'pen' - it's refrigerated as it needs to be kept between 2 and 8 degrees C but it stings if you inject it when it's TOO cold...half an hour on the kitchen table makes it about right and I'm supposed to check that it's:

a) in date

b) has no flecks in the liquid

c) is not damaged

 Making sure everything is squeaky clean (including my pimply, pale thigh here!) I find a fleshy bit and follow the steps...I have heard that patients using Humira in the States get a talking pen which they can practise with but no such fun here in the UK unfortunately!

The needle is in that white tube and step one is to take the lid off...so far so good!

 Step two is to take the lid that covers the push button off...both recyclable BTW! I'm a bit feeble in the hand department and find it hard to grip so I use both hands to do the job and still struggle a bit but would hate anyone else to have to do it...

 (When I did my first jab on my own I had worked myself up into such a state and it was fine, in fact I barely felt it! The pain from RA is so much worse TBH...)

 Pushing down hard enough to push the white tube back - this makes sure the needle goes in and none of the drug seeps out...urgh! Always makes me feel a bit sick this bit - getting the angle right so I can see the little 'window' is a bit of a palaver but I can just about do it now! I have to count to twenty....slowly and try hard not to *jump* when I press the button!

In answer to anyone who thinks it's 'just a pen, a little prick' it isn't ya know - it's a bloody great needle and waiting for the twenty seconds to be over as you hear the liquid going in (yes, you really can!) seems to take forever!

 But....then it's over! I check the 'window...

 ...place the packaging and lids in the 'green bin'...

 ...place the needle in the sharps bin that sits next to the bleach bottle with the child (and Nic) proof lid that lives in the bathroom...

...go finish my cuppa and get on with my day!

Hope anyone waiting to start on Humira finds this reassuring and helpful, Nic x

PS. I still have a lot of pain in my feet, hands, hips and knees but can definitely see some improvement - I don't have 'sausage' fingers or toes right now and have been wearing normal boots for months now. *smiley face*

 

Feed me!

Chocolate and peanut butter crispy cakes!

One jar of crunch peanut butter, two big bars of cooking chocolate, dark and high in cocoa solids! Melted together in the microwave (choc first and then add PB) then give it a good stir, sniff (very important!) and then add enough cornflakes or rice crispies to use up all the chocolate peanut yumminess before spreading it all out on a tin or baking tray lined with a bit of greaseproof. Leave in fridge while you go and do something else and cut into squares just before you need it - the bits that drop off as you tidy are for you to test and it is kinda the law that you do this and at the same time give yourself a pat on the back! Mrs Tudor and I thought that they would be jolly nice if they also had some sultanas or flaked almonds in...or some glace cherries.....*sigh* sadly the Monday ladies are a little choosy and some don't like sultanas or orange or apple or...you get the picture? I like to try and keep everyone happy!

 This post has been inspired by a great tweeter fella who loves a good cake and always makes me smile when things are being a bit glum or tricky...he knows who he is! He liked the look of my crispy cakes which went down a storm with the crafty ladies last night...I missed another evening session of my Monday group due to being knackered and feeling a little under the weather - I have my second assessment for anti-tnf this Thursday and it's making me a little stressed. Over the last few years I have seen a pattern forming and I always get slightly 'better' around this time of year - to narrowly fail another assessment would be very hard to bear....but hey ho, there is always cake!

I've had to adapt almost every aspect of my relationship with food since becoming ill, at first I did try to isolate which villainous foodstuff was responsible in making me become so ill. Then after a while I thought 'sod it' and didn't really bother about anything, I just wanted to be able to move around and not be in pain - food became fuel and was no longer pleasurable.

I'm back round to enjoying my relationship with food again, it's different and there's always a few glitches along the way such as when I take Tramadol (takes away my appetite completely - not a good thing! I may look hefty but it isn't always food that's responsible...) but we are rubbing along nicely right now...I've developed a few different techniques which will have purists fainting all over the place but it gets me by and I have very few complaints!

These are my heavy old scales, they belong in a big farmhouse kitchen and not in a tiny modern (but perfectly formed) council house in deepest, darkest Suffolk. 

I use the butter to weigh out the self-raising flour and sugar - equal amounts of each and then pop the butter into one of my lovely old vintage mixing bowls and place it in the oven whilst it's warming up. I know that I should be creaming the sugar and butter together until it's light and whippy but if I do that I will need a lie-down for the rest of the day. It's the same with preparing vegetables, chopping up a butternut squash can finish me off for a week! As soon as there is some softening occurring I remove the bowl carefully and sit down with it at the table and using a wooden spoon start to mix everything together...I could use the Kenwood mixer but what with the pills resting on it and having to change the beater...I prefer this way. Once I've added eggs - five if they are from Zsa zsa or Button and four if they are from Hylda or Betty - I plonk it into a big silicon and glass cake tin I got from Lidl for four quid and cover the surface with chopped up fruit. Pear and raspberry work well but so do pears on their own and if you are lucky enough to live near a Bullace tree then do some foraging and get them on that cake! After a sprinkle of sugar it goes into the oven and is ready when an inserted skewer comes out clean...ta da!

It's not all about cake though and the Fella and I have had this (above) every Sunday bar one ever since seeing this on Nigella's programme - he reckons he'll never get bored of it! Parmesan dusted eggs are cooked in tomatoes that have been mushed up in a pan with garlic and chilli - we use a squeezy tube of Harissa paste from the Turkish bit in Asda instead of chopping chillies, with my track record for clumsiness it's far to risky to allow me to handle REAL chillies...

So between my wonderful ma cooking brilliant roast dinners for me and eating with the Fella I have managed to find a way to love food again. I can no longer lift my pots and I can't cook every meal everyday, I don't have the energy and my hands hurt far too much but we get there...slowly! Tonight we will have sesame prawn toasts with our Thai curry, in the old days I could rustle them up in no time but these days I need three days notice and recovery time...they are so worth it though! The only ones we have had that are better are at the China Chef in the Station Yard at Needham Market.

There's your first food blog from me then Noel...I've held back some hot cake pics for another time! Nic x

PS. Apologies for poor quality photos, I'm borrowing the Fella's laptop and only have BlackBerry photos of food to hand right now!

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