Living with RA

[Jora]

Anyone identify with this?

[Hidden]

Oh yes. Unfortunately they don't die off in the winter either. They just get angrier and more aggressive x

[Jora in reply to Hidden]

I agree, they do!

[Beaches2]

Me too! I had a particularly nasty swarm nesting in my shoulders last year! We blasted them away with steroids!

Another great pic jora.....thanks....hope you are well/ better than you were? Are you still on Enbrel,and more importantly is it starting to work? X

[Jora in reply to Beaches2]

Thanks, Beaches. Still on Enbrel - but also Hydroxychloroquine, Sulfasalazine, methotrexate and Prednisilone (12.5 mg tapering down to 6 mgs as quickly as safely possible). Flare is better, though very variable even within the day and I feel horribly drugged. i was told to stick it out for 3 months, to give everything a chance to work in synergy. open studio a success, but drugs have knocked the passion out of me. How are you doing?

[Beaches2 in reply to Jora]

hi

Well done re open studio......can't have been easy given how you were feeling! Your passion will no doubt return once you've had a good rest and a bit of pampering, and hopefully your body will get used to extra drugs!

I am also carrying on with Enbrel for another few months to give it time to work.......I was disappointed cos read lots of people saying it worked quickly, but gotta stay hopeful and am willing it to work!.....am on mtx and lefl as well and was/ still am, hoping to lower doses once Enbrel gets going.....for now, steroid jab few weeks ago is working well.......should be wearing off around Xmas......oh great!......then will know if Enbrel is working or not!

Hope you have a nice relaxing day x

[Jora in reply to Beaches2]

Unfortunately, I couldn't persuade my consultant to switch from steroid tablets to injections. I know they fade, but that gives one a chance to see what's going on. I wonder if you have some prednisilone tablets to see you through CHRISTMAS if you hit a low then. x

[Beaches2 in reply to Jora]

Yes jora I've understand your thoughts re seeing what's going on and you are right, still, at the end of the day, it's waiting for the "real" drugs to work isn't it?

I'm making sure I have anti infl and painkillers in over Christmas just in case and can get hold of rheumy team quite quickly if desperate!.......so far it's never been anything like that first bit last Christmas, and hopefully never will be again!

Im keeping my fingers crossed for us both that Enbrel starts to work some magic for us xx

[Hidden]

Oh yes Jora, that's exactly how I feel, that's a brilliant image ! Lynda xxx

[Jora]

Thanks, Lynda. Glad it hit the spot! A few friends without RA said "ah, now I understand".

[Hidden]

i understand I think they have come to visit me now its so cold buzzzzzzz

[Jora in reply to Hidden]

Me too!

[cathie]

My hand

Looks as tho I've been stung by one

[Jora in reply to cathie]

Poor you. At the moment, it's my knees that are worst, but it varies.

[Metal-legs]

Hi Jo Love your latest pic and can relate so much to it. -feels like I have a huge wasp nest in my hands and feet, absolute agony to walk. Hope you can find some relief soon. lots of love to you xx

[Jora in reply to Metal-legs]

Yes, this one seems to resonate with others. So sorry you are in agony when walking. That is so miserable. I ran out of space on the iPad or wasps on ankles and feet would d finitely be included. I'm recovering from open studio,but feeling terribly low. I think it's the reduction in steroids.

[Metal-legs in reply to Jora]

Your open studio must have been a huge undertaking and very exhausting but give yourself a big pat on the back for completing it. Hope you feel a bit more perky soon.

[Jora in reply to Metal-legs]

Yes, 300 people through the house over three days is exhausting at the best of times. But I had terrific support, good feedback and a healthy number of sales. RA affects my work but I'm determined it won't stop me. I have no family, so art is my raison d'être. If I have to give that up ... Well, it doesn't bear thinking about. x

[helixhelix in reply to Jora]

You won't have to give up art...you'll find a way. I've just started reading the biography of Edward Burra, and he had to take to watercolours to cope with his RA but managed amazing work right to the end of his life.

And I like the wasps...although I have a burrowing insect in my feet I think.

[Hidden]

Yes Jo I agree with Helix - of course you won't give up - you will just reinvent yourself when necessary - by adapting according to what you can or can't do - and this will make your work even more unique I'm sure. Well done for getting through what sounds like a very successful open studio. You are probably just wiped out and the adrenalin rush has left you feeling rather lost and low. I have this frequently - the anti climax after a lot of excitement. It's very hard when we live on a physical and emotional rollercoaster 24/7.

I have squashed most of my wasps by maxing out on naproxen. They had somehow invagled their way into my peripheral nervous system and were just having a ball stinging my small fibres. I still have the numbness and chilly draught that they've left in their wake but wasp killer has done its job for now. Price on tummy and sense of taste/smell is rather high - there's a mouse gnawing at my guts now. But it's a balance of evils of course and wasps were defintely the no.1 enemy! X

[Jora]

Thanks Helix and TwitchyToes. That's very supportive and sweet. You are probably right. If I have to paint with my nose, I will! Though clambering through rock pools with all my gear might be a thing of the past. I think my last post was typed when I was wiped out, as you suspected TT, and it is the fatigue possibly even more than pain and immobility that inhibits creative output.

I sold £67.50 worth of cards in aid of NRAS at the open studio, as well as a healthy number of paintings in aid of myself. So that brings a smile to my increasingly moonlike face.

Tomorrow, I'm meeting with a musician to discuss a collaborative project. It'll be interesting to see if anything comes of that.

Then I'll have to think about more RA sketches incorporating burrowing insects and mice

Bless you both. I'll hold you in the light as Quakers say, trusting that your respective pains ease. Jo xx

[Smiler53]

Hi Jora,

Love the picture, they have been stinging my knees at the moment. What successful open studio you had, you must be really chuffed. I'm sure you will have many more. X

[Jora]

thank you, Smiler, very belatedly. Only just found this. Not looking at screen much at the moment. A touch of the tapering blues! happy christmas to you. x