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