Tuesday 6 November 2012

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!

Tuesday 2 October 2012

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!

Monday 1 October 2012

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

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!

Wednesday 29 August 2012

Nice Guidelines...

 I've been up a while, not because I have trouble sleeping but because I'm still so upset after my visit to Ipswich Hospital. Until recently I have trusted them to give me the best treatment available for the arthritis that I have been blessed with.
This last flare-up which started in February has been so painful and draining that every time I speak to anyone about it I end up crying, this gets me nowhere and just leads them to assume I'm depressed. I'm not at all depressed just fed up with being in pain. Yesterday I was told that I could have stronger painkillers (opiates) to help with the pain and help me get some sleep. This annoys me as I have never said I have trouble sleeping - I've had periods of insomnia in the past due to emotional distress but at the moment I'm in a very happy relationship with a very nice man who I adore. We walk our dogs together, cook for each other and he never upsets me or stresses me. My family and friends love him so I usually have absolutely no trouble in the sleeping department!
I'm upset and cross because the nurse who said I needed painkillers to sleep several times yesterday didn't listen to a word I said. I need painkillers right now. I'm waiting for them to work so that I can have a bath, do my chicken duties and then go to work. 
I need them to aid my normal daily life, walking from the bed to the bathroom, more of a stumble and a bit of a swear really if I'm honest!
My x-rays from 2009 and 6 weeks ago are also ready for me to collect, three forms of ID including one photo one and one which is a utility bill plus a tenner in my bag with my knitting....except that there was along wait, my appointment was 3.50, I got to Rheumatology at 3.45 (a record!) and was seen at 4.40, by the time I had been seen by two nurses and sent for x-rays and a bloodtest for something I haven't been tested for before (I forget now what it was but it's to do with 'markers' again) the office I could collect the disc from was closed! Ho hum...
 I did get to see my hand x-rays though not my feet. They use the word 'reassuring' a LOT! X-rays of my hands show no erosion but one nurse did admit that there is twisting and deformity showing, particularly in my thumbs. My feet were x-rayed again, oblique this time as there are signs of change apparently. They may ask for a scan to determine what is soft tissue....I just know that they hurt all the time and when I walk I get striking pain where my toes join my foot.
So along with yet stronger painkillers they are suggesting I try yet another DMARD - Leflunimide. I've tried two already the (as a twitter friend and fellow PsA sufferer describes it) Sunny D of the drug world, Sulfasalazine and the oh, so scary Methotrexate. Both requiring fortnightly visits to the Vampire for blood tests to monitor the effects on my organs. 

Maybe they are hoping I get so zoned out on the opiates that I stop fighting and just sleep all the while...(this is a joke BTW!)

NICE guidelines say that after trying two DMARDs that patients with inflammatory arthritis should be put forward for trials with anti-tnf treatment. These are three month trials and that's because it works fast, in as little as THREE weeks sometimes. The traditional DMARDs take around three months to show any effect. I tried Sulfasalazine for a year, Methotrexate for 15 months and there has been no noticeable slowing down of the changes in my hands.
I didn't have enough qualifying joints yesterday, plain and simple. 

It's unfair.

 I think it's unjust and immoral that because a PCT has recently tightened up the guidelines that until 6 weeks ago I would have fitted into I am left in pain and having to start slowly introducing another DMARD into my life and wait to see if it is the thing that will work for me. You do it slowly because the side effects are pretty unpleasant. Nausea, hairloss etc.
The reason I'm so upset is because arthritis doesn't only affect the joints, it affects the internal organs too, MY internal organs. Anti-tnf treatment can cut the risk of stroke and heart attack by 50%! It can reduce the need for hip and knee replacements. It could prevent my hands and fingers from becoming deformed and mutilated by this sodding disease. 

Nice one Ipswich Hospital!

Tuesday 28 August 2012

Birthday!

It was my birthday on Sunday so we kicked off with a lovely breakfast at Alder Carr Farm before setting up a picnic area with croquet at the Camping Land - brilliant day! Great company, food and fun! 
Feet 7/10 Hands 7/10, the cooler weather has helped a little.

It was great fun and a chick hatched on my birthday....but it wiped me out a little and yesterday I didn't really do much just a little bit of knitting and rested so that I can be ok for work today. Feet 9/10 Fella caught me wincing and frowning as I walked about - hands 8/10, the throbbing and pins and needles has stopped.

Big day tomorrow, knitting group and then hospital where I'm to be examined by two people to determine how bad the joint damage is and if I fit the criteria to try anti-tnf treatment. I have tried hard with the Methotrexate since last May and there has been definite twisting going on in my fingers and my feet are so misshapen, it's a wonder I can get any shoes on at all!

I also get to pick up my x-rays!

They make it pretty hard to get hold of these and all I wanted to do was sit and chat through any changes visible with my GP. So three forms of ID (one with photo) and a tenner will get me a disc, that took eight phone calls, one of which was to PALs (a patient liason service) as I was told three times that the images had been sent to my GP.....and they hadn't!

I wonder if there are any more chicks cheeping down at the allotment?

Happy Tuesday, one more day to go......x

Thursday 23 August 2012

The blues....

 Yesterday I was feeling very blue and not in a magical indigo way. 

I'm having to restrict how much I'm using my hands right now and I didn't even turn on my laptop yesterday but if I was to score the pain yesterday it would have been 9/9 for both hands and feet with a cheeky few scores of 7/10 for hips and 6/10 for arms...I couldn't even cry as I wasn't sure I would ever be able to stop.

BUT today I am kind of having a day off and as I'm not taking methotrexate any more it isn't even a pill day - hurrah! I plan to make some paper with the pulp that is sitting in the almost exhausted indigo vat. It may turn out so well that I offer paper-making workshops in the future at HH HQ, or it could just get messy!

The natural dyeing workshops have been really popular and I especially like the effects on this fleece, dyed with Golden Rod and then over-dyed with indigo. 

Magical!

Sometimes, just sometimes when the dyepots are bubbling away with excited onlookers waiting to see what shade they will get, or if I get a smile from someone who has just mastered a new technique I've been teaching them and they say 'wow! I've always wanted to do that' or 'what a brilliant idea'  I don't feel the pain, the stiffness goes away, I forget it all and that is magical! 

Hoping for a magical day and a not quite so messy one...x




Tuesday 21 August 2012

About me...

 Today my joints feel like they are on fire, it's been so hot and for some reason that has aggravated my already stiff and very sore bits. I find I am plotting and planning my routes and jobs in order to minimise the amount of time I'm on my feet and since February the thought of being stranded without my trusty (rusty) bicycle almost makes me break out into a cold sweat.....

I like to think that I'm a jolly person and that having arthritis doesn't stop me from doing things like being a mad aunt...

 Getting flowers from fellas...
*whispers* these aren't from THE Fella but they are beautiful and far nicer than the person who gave them to me turned out to be in the end - that's another story!

 I can cook, I love to cook! It's just that sometimes I can't because my hands hurt or because I'm just plain knackered out! Sometimes it takes me so long to prepare a meal that by the time I am ready to eat I am no longer hungry or interested in it. The fatigue element of arthritis is the part I'm finding hardest at this moment and I get sooooo frustrated at having to operate at less than half speed. 
(please note - no grey lines round the yolks! I make brilliant scotch eggs....)

 The things I can and can't do have been bought to the fore this week as I tackled (again) the 55 page DLA (Disability Living Allowance) form. I was turned down last time and didn't appeal as the rejection happened to coincide with a brief period of remission. 
DLA would allow me to get someone to help me clean, getting down on my knees to clean the bathroom will mean extra pain for days after, wipe me out energy-wise and mean that I may not be able to do something else.....like work!
But how do you measure what you can and can't do?

 I can write, here is a pic of Country Crafts on a German website! The German version has a different cover...smart innit?! The fact that sometimes I ache so much that I can't lift a copy of it with one hand is a little depressing though.
I can teach sewing machine skills and instill confidence in people, encouraging them to match, measure and cut fabrics but sometimes I can't even use a pair of scissors...

 I can easily pick marigold heads from the allotment for dyeing workshops and yet find weeding almost impossible involving as it does a great deal of both kneeling and using my hands.

So how does one measure the impact of arthritis on a life? 

I can't do some of the things I would love to do, like running - I last ran in January. I can't do some of the things I'm not that bothered about like cleaning....but I would like to live in a clean house again!

It would be nice to be able to choose to do things without having to work out what I will have to miss out later as sometimes cleaning the bathroom floor isn't worth missing a meal for!

I know I promised to blog about piles (and it ain't what you're thinking!) this time but they will have to wait...something else much more important came up.

Feet 7/10
Hands 9/10

I'm recording the scores for a week as I have an appointment with the rheumatology nurse next Wednesday.

Nx

Friday 17 August 2012

The one in the middle is madder....

 I refer (of course) to the dye plant madder and the felt in the middle is dyed with madder (exhausted) and we had pre-mordanted with tin....

 Natural dyes are so exciting, you never know what you will get! So many factors influence the resulting colour, it certainly keeps you on your toes! 
Last time I blogged I had been prescribed another ant-inflammatory drug called Sulindac and like the dyeing you never really know what will happen next. 
It didn't agree with me at all, in fact it very nearly killed me! I tried hard to keep smiling through the pain, dizziness, nausea but when I started to lose blood from everywhere I had to pester my poor GP yet again! I was left in pain and bleeding dangerously for the whole four days it took to get advice from the hospital.

So.....it's all change again! Celebrex seems to be ok although I still have pain, no side effects as far as I can tell and supposed to be one of the safer ones to take.

That's me, in the middle and madder!

Next post will be all about piles.....x

Tuesday 24 July 2012

All change....again!


 I'm having a bit of a tricky time with medication and different practitioner's opinions on how to deal with my PsA at the moment.
The methotrexate I take is a Disease Modifying Drug which means that it is trying to work against the anti-bodies and stop anymore damage to my joints. This doesn't take away the swelling or pain so that has to be controlled with something else, I've tried Diclofenic, Naproxen, Ibuprofen, Brufen for the swelling - Paracetamol, Codeine and Diazepam for the pain. Quite a collection for someone who never even took a pill for a headache before this!


*I feel there should be a nice picture here but couldn't think what to put, maybe one of me and the Fella would do?*



I'm on six-weekly visits to my hospital right now after having a bad flare-up earlier this year and although I never see my consultant (and have just heard that he's leaving soon anyway) I see a practitioner nurse 'suggested' that my GP wasn't handling my pain management properly! So after seeing the nurse at the hospital I booked to see my GP the following Tuesday, last Tuesday in fact. She wrote another letter of complaint, described my treatment by the Rheumatology department as 'crap' and referred me to another consultant - she kicks ass!

My GP is amazing, has fought my corner and stood up for me when the hospital have let me down and has held her hands up to say that my condition is outside her field and she's led by the hospital team. It's a very frustrating and tiring process! It annoys me that the only way to get anyone to take any action is to complain but there you go, I was too polite, too trusting and didn't moan which is why I was left in pain for so long before anyone believed me....

The rather jolly looking dayglo pills are another anti inflammatory that my GP is trying me on as the practitioner nurse  - it's called Sulindac and is prescribed so rarely that the surgery didn't even have it, the pharmacist had to phone the manufacturers to find out some information for me about it. A google search threw up a few bits and pieces, sounds promising!


According to the nurse practitioner 'the x-rays show no signs of permanent joint damage in the fingers or toes'...hmmm, I'm not convinced and when I thought back the x-rays they are consulting are almost two years old, I queried this and was sent for some more x-rays that day. A lot can happen in two years and I see my hands and feet everyday - they certainly ain't looking any better and boy do they hurt!


 I'm off now to bake a couple of cakes for my knitting group, take the pills that almost glow and drink tea till my feet stop throbbing enough for me to hang out washing (who knew that pegs could ever be so challenging!) and cycle down to the allotment to feed the chickens.


It's always a difficult time when the pills change....Nic x


Monday 23 July 2012

Pill Day


Eight 'yellers'...these eight little yellow pills are part of my treatment and contain Methotrexate. 

Why so many? 

It's quite clever really, they only dispense one strength so that you can't accidentally overdose yourself or be prescribed the wrong strength....see? 

Clever. 

They look so small and unimportant sitting there as I wait for the Brufen to work it's magic.

The practitioner nurse I see at the hospital has put my dose up from six pills to eight over the last couple of months and every week (I only take this once a week) I dread 'pill day'. 

Why so if it's only once a week Nic? You may well ask. Some people are on  medication that they take all day and night long and they don't make a fuss....

Methotrexate is a brilliant drug and it really does change lives, for some people it can give them back a life that arthritis has taken away. It can make you sick, it can make you feel tired, it can make your hair fall out and give you some very odd dreams! I have had all of these side effects as well as one that is common in *ahem* younger users....I sometimes develop a cold sore a few days after 'pill day' that appears so quickly that it has stunned the few people who have been lucky enough to be near me when it happens! To counteract this and some of the other effects I also take a folic acid supplement for the three days after 'pill day' if I miss a day it's 'hello coldsore!'



I have an allotment, I love spending time there. I keep a load of chickens down there amongst the weeds and recently we acquired a whole load more! Eleven baby chicks, hatched and hand-reared by me and the neighbor (known as Fella on Twitter, yes I'm a tweeter, twaddict, one-of-them...) and because I also have a teenage son, a feisty dog (he's on Twitter too!) a shop and a website to keep an eye on I have to try and work out which day I can afford to have as 'pill day' - I have yet to find the best day. I ask myself these sorts of questions when I'm trying to plan my week.

1) Do I dare risk feeling sick at work? If I need to lie down for a while because I feel so rough will I get the chance to?
2) Is it fair to my family and friends to use one of my days off from the shop as a 'pill day' knowing full well that I won't really be able to do as much as I would like?
3) Is it fair for me to spend the only free time I have feeling sick and even more tired than the arthritis makes me?

I really think that I dread 'pill day' so much because it isn't just one day, it's that day, the day before, the three days after and then before I know it we are back round to the next one. Most of all I hate it because during times of remission (few and far between) it reminds me that I am not 100% well, I will never be like that again and my feet will always hurt...

Monday 9 July 2012

I really wish I had danced more....

I've realised lately that I take a LOT of photos of my feet and that isn't really a particularly normal thing to do!

Horrible aren't they?

I have Psoriatic Arthritis and if you don't know what that is then please do not feel at all silly as a recent letter dictated by my GP says that I have Sciatic Arthritis....I explain that it's like Psoriasis (the flaky skin problem) and that instead of being on my outside it's on my inside!

Ouch! 

My days start in almost the same way every day, I never lie in even on days off - I wake up and prepare myself to *move*. One of the 'joys' of PA is that you never really know which joints will be affected and how...but mastering the one-handed bra application process is a particularly satisfying achievement! It certainly keeps me on my toes...

Why the pic of the knitting needles? 

I get up early and take a massive dose of Ibuprufen, it's huge, more than twice the recommended daily dose for a 'normal' person and while I wait for it to work it's magic I sit in my chair at the kitchen table and I tweet, read, work and sometimes I paint...with lots of tea to go with the pills!


It hasn't always been this way, I have always been a very active and creative person - I recently found this plant marker on my allotment. I sowed the Welsh Onion seeds exactly a month before THE DAY, the day I woke up, jumped out of bed to make a cup of tea and I fell over - my knees just kinda 'collapsed' and I got up, laughed a bit (I laugh a lot!) and it happened again...getting old I thought!
*family fortunes buzzer sound here* 
It seems that I haven't only inherited my father's good looks, charm and wit but also his psoriasis, it was just that mine had been hiding away inside me all these years.



This is Bob, he's great! Tiny but strong, used to going for long, long walks...when I realised that I could no longer do the walks he was used to I used to take him running alongside my trade bike but eventually that became too difficult and I eventually asked a neighbor and fellow dog owner to walk him, more about him (neighbor not Bob) later!

So, why start this blog?
*insert a random pic of wholesome produce from the allotment* 
I meet a lot of new people running Halfpenny Home and I get asked a lot of questions about what I have done, what I do and why I do things - at first I didn't tell many people about having PA! It's not very sexy and as well as struggling to cope with finding a medication that works for me I found it distressing describing something I was only just starting to learn about myself! I do now tell people about PA and try to let them see that it isn't the end of the world, it's unpleasant but I keep smiling and as I said before I laugh a lot!

I hope this isn't starting to sound too depressing as I can honestly say that I really can see positive things that have happened to me because of this! I also wanted to keep a record of the highs and lows as when my medication is working I forget that there is anything at all wrong with me and when things are very bad I like to be reminded that they will get better again! 
A very selfish reason to blog but at least it's an honest one!


Before the day *it* happened I was in a very unhealthy relationship with someone who was very controlling and insecure, the arthritis soon weeded him out! I worked alone and spent many hours working on beautiful fabrics making soft furnishings for interior designers and lovely shops - I loved my work and I did it for a very long time. The joints of my hands won't allow me to do this any longer but I now take enormous pleasure and pride in teaching others to be creative, artistic and crafty!

I also have a book! I have lots of books, mostly cookery but this one has me in it, on it and I am very proud of it - a great achievement! Not quite as satisfying as learning to write with my left hand as well as my right but pretty damn close!

I got to know my neighbor a whole lot better! Yep,the one who walked my dog Bob for me....how cool would it be right now to end this post with 'Reader I married him.....' ? Ha! As we often sign off messages to one another with, but we are still neighbors!
Thanks for getting to the end if you are indeed still with me.....Nic x