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

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!

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

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

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

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

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

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...

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