Here's one I made earlier( art as therapy)

[misty14]

Hello everyone

Here's one of my cards that I love to make , therapy for coping with these illnesses!.

Hope you all will add your similar creations to keep little effies post going with a lot of interest for us all.

Keep as well as possible MistyX

[littleeffie]

Oh Misty that is lovely.

Love the colours you've put together.

Thank you for sharing it as its just gone midnight and I am unable to find a comfy position so came on here to distract me and saw your post.It really cheered me up.

So thanks again looking forward to see others.

Effie x

[misty14 in reply to littleeffie]

Hi little Effie

Thank you for your kind words , hope you feel better soon.X

[littleeffie in reply to misty14]

Thanks misty.

[BonnieSue]

A nicely done card! I'm amazed at all the artistic talent that I see. Now I know you are part of it! It looks professionally done.

[Musicteach]

So pleased to hear from you, Misty, it has been a while and I was beginning to worry about you! Lovely card! Xxx

[Hidden]

Great stuff Misty - making as therapy is the best and your card looks professional.

Maybe Lupus UK could have an online shop and sell things made by sufferers in order to raise money for the charity? I'm sure there are a hundred andone reasons why charities aren't able to do this (costs of admin etc) but I'm putting it out here anyway!

Txx

[PMRpro in reply to Hidden]

The northeast of England PMRGCAUK site has an online shop so it can't be particularly difficult:

pmr-gca-northeast.org.uk/in...

just so you can see what they do. I'm sure if someone contacted them they'd tell you how to go about it.

[misty14 in reply to Hidden]

Thank you Twitchy for your praise which is particularly special as you are such a good artist. I think your idea of an online shop for lupus uk to sell our artwork is a great idea. Just maybe it could happen!. Good luck for seeing your new GP. Hope it goes well, you deserve it. X

[Paul_Howard Partner LUPUS UK in reply to Hidden]

LUPUS UK has its own charity shop on eBay which allows you to sell items yourselves and have the proceeds come to the charity. You can view it at ebay.co.uk/egw/ebay-for-cha...

[cuttysark]

Such a beautiful card, Misty, the colours are so perfect together and I so love the little hearts in the tiny pearls! Keep creating them, you have a real talent there!!

So agree with Twitchy above , it would be lovely if we could make things for Lupus Uk and have an online shop.

C xx

[misty14 in reply to cuttysark]

Thank you dear Cuttysark for your lovely comments, it's my Mum's Mother's Day card. I hope your enjoying your day. I think it's a fab idea to sell our creations for Lupus uk. I'd love to see your knitting, I bet it's beautiful. Good luck for your week ahead, will be thinking of you. X

[noonoo52]

Hi Misty14, its so lovely, one would be nice with Butterflies, maybe do that next and upload for us all to see. Well done.

Twitchytoes is right we have many artistic people on this forum and it would fantastic to put it onto cards to sell on the lupus website shop, (wonder how much this would cost) have we anyone on the forum that knows about editing?

Mandy writes how we all feel and her # series are brilliant wouldn't it be good to get a book of everything pictures, cards, poetry etc.

Take care all love noonoox

[PMRpro in reply to noonoo52]

The northeast of England PMRGCAUK site has an online shop so it can't be particularly difficult:

pmr-gca-northeast.org.u...

just so you can see what they do. I'm sure if someone contacted them they'd tell you how to go about it.

Tell them Eileen sent you

[misty14 in reply to noonoo52]

Hi Noonoo

Thank you for being so complimentary about my Mum's Mother's Day card. I love making them and wish I had more time to do them. I've got lots of different butterflies , I'll have a go. I think your idea about a book is a good one, how about also including people's easy to cook recipes when our illnesses make cooking hard!. Hope your as well as can be. Take CareX

[noonoo52]

Ahhhh bless you Eileen, will take a look at that, see knew someone out in the community would have an idea. Thank you and if you are a mum Happy Mother's Day.

Love noonoox

[Barnclown]

Oh my, misty: this is such a lovely card: thanks so much for posting your photo! just looking at your card helps me feel better about everything (my abdo flare had been cooperating with treatment, but started acting up last night: your design is good medicine). I agree whole-heartedly with all the praise in everyone's replies: your talent is vvvvv special 🌟🌟🌟👏👏👏😘 coco

[misty14 in reply to Barnclown]

Oh Barnclown

Thank you so much for your kind praise of my card. It's Mum's Mother's Day Card. I'm sorry your abdomen is flaring again and hope it settles soon. We want to see some more of your lovely photography. Good luck this week, will be thinking of you , hoping you get the help you need X🌷👌🏻⭐️😊

[Barnclown in reply to misty14]

Thanks so much misty! You know how this is: ups & downs: comes with the territory! HAPPY MOTHERS DAY to your dear mum & everyone else's mums 😘😘😘😘😘

[noonoo52]

Hi PMRpro, just looked at your site and found that easyfundraising.org.uk which is a great idea, will look into that.

My father has suffered with PMR, now tell me does it ever leave you or is it permanent as he is always complaining about this pain and the doctors said its not the PMR anymore, but he is convinced it has stayed with him.

Would be appreciative of a reply Eileen.

Love noonoox

[PMRpro in reply to noonoo52]

PMR never really leaves you - like any autoimmune disorder it can burn out, die away and you are said to be in natural remission (as opposed to drug induced remission). PMR symptoms are just the appearance of an underlying autoimmune disorder that leads to vasculitis which reduces the blood flow to the muscles and makes them intolerant of activity or exercise. Taking pred reduces that inflammation which should then result in less pain and stiffness - but it has no effect on the CAUSE.

If your father says that he has pain that is the same as what was diagnosed as PMR then it is perfectly possible that that is what it is - and any doctor who denies that doesn't know much about PMR. It can recur, though mercifully it doesn't happen to everyone - and when it recurs it isn't always the same as it was the first time round. Some people don't have raised ESR and CRP second time round, just the symptoms. Or vice versa. I have friends who have had it twice and the 2 episodes were totally different. Often people manage to get down to 1mg/day and their doctor says it's gone you can stop now - and within weeks it is back. There are doctors who will try to tell you 1mg doesn't do anything - it has appeared to do so for quite a few people I have come across on the 3 forums I participate in. Patients who are weaned off pred in 2 years or less are felt to be at a higher risk of a relapse at some later date - but there are many doctors who will try to tell you that if it has lasted more than 2 years "it isn't PMR by definition".

I'd say your dad needs new doctors. Ones who don't have preconceived ideas and who will accept that either he still/again has PMR or that he now has some form of other inflammatory arthritis. It isn't good enough to say it isn't PMR so get on with it. LORA (late onset RA) can start in an identical manner to PMR and about 1 in 6 patients who are originally given a dx of PMR later have it revised to something else, most often LORA. These other forms of arthritis respond to DMARDs, the usual medications used for RA, PMR doesn't always do so although for some people taking a DMARD allows them to manage on a lower dose of pred.

If he is in pain - they need to be thinking about doing something not effectively telling him that it is all in his head.

[noonoo52 in reply to PMRpro]

Hi PMRpro, you are a diamond, thank you so much for all this information today, I read it to my mother (been visiting for Mother's Day) and she said I can't believe that you have such lovely people on your forum (had to explain what a forum was) bless her, then proceeded to tell my father, finally someone who knows what I am going through, is she a Doctor, no I said she is someone who has been fighting PMR, once I explained what you had said he was quite overwhelmed, she has written in such detail he said, because she knows her own body and what it all means. We are arming ourselves next time he goes with information, I will do some more research. His sister also has it and is only on a very small dose of Pred, they took my father off it as he has Osteoperosis and he said if they would put me back on steroids I would feel better like the last time, but don't think they would do that, I will look into other medication before we go to the doctor.

Many thanks again, can always rely on help here.

Take care love noonoox

[PMRpro in reply to noonoo52]

I don't know how old your father is - but I have been on pred for over 6 years and after about 4 years there had been no change in my bone density at all. Only about half of patients on pred develop osteoporosis and there is no real evidence that that wouldn't have done so anyway - maybe it is just sooner. It is also felt that most of the bone density loss occurs in the first 6 months - once you have been on it longer then the change is relatively smaller. In any case, there are medications which can be used to minimise the loss of bone density - I have only ever taken calcium and vit D but there are others for more serious cases.

But what is the point of leaving someone in constant pain and immobile? Immobility is one of the greatest risk factors for osteoporosis - and there a lot of precauctions you can take to avoid the falls which lead to fractures. One is to keep mobile so your balance doesn't deteriorate - PMR prevents that very effectively.

Here's a list of useful reading - you'll find a whole load of links to PMR info and websites:

patient.info/forums/discuss...

[noonoo52 in reply to PMRpro]

Hi PMRpro, thank you for all this information, over the last couple of days I have started to get info together so we can tackle the GP. My father has just turned 90 and his sister is 92 both were diagnosed with PMR years ago, but because of my father results a year ago now they said he no longer had it, so when we go we can tell them that while we respect the GPs opinion we would like another one as his symptoms are still the same and he is in considerable pain, he no longer wants to eat, he gets upset as he has always been active and the pain is stopping him from enjoying what time he has left.

Take care and thank you again, this forum is just so. Informative, there are so many people who know how to help others.

Love as always noonoox

[GloomyEeyore]

Your card is beautiful Misty. Thank you for sharing. I'm sure a lot of people would buy cards that are so well made. A family friend makes and sells cards for MS as her husband has it. She only sells to family and friends though. Cross stitch is my hobby. Haven't been able to do it so much at the moment as my fingers are playing up. Hope I will get back to it soon.

[littleeffie in reply to GloomyEeyore]

Here's hoping your back to your cross stitch soon.Would love to see a photo of it.I only tried it once and I loved it but found my fingers kept popping out due to hypermobility and as only have use of one hand which makes things a bit of a challenge.

It is lovely to hear about so much art and craft going on with members ,family and friends.

Again hoping your fingers start behaving.

Take care x

[Penelope-Mary in reply to GloomyEeyore]

It's cruel that we should lose the fine motor control for that which helps us cope. X stitch for you, art, photography, restoration of canes and so many many more talented peeps . My lovely mother died suddenly from complications of RA at age 67. She'd been a concert pianist so 😪

[misty14 in reply to GloomyEeyore]

Hi gloomeyeeyore

Thank you for your lovely card praise. Hope you'll be able to go back to your beloved cross stitch and we'll be able to see a picture of it. Keep as well as possibleX

[Penelope-Mary]

Love it! Misty! You are talented, such a wonderful way of channeling away pain. Beautiful happy yet calming colours. Magnifique

🌻

[misty14 in reply to Penelope-Mary]

Hi Penelope Mary

Thank you so much. Be wellX😊

[KarenC]

Your card is beautiful misty, my sister makes her own too, unfortunately I am less artistic. I do crochet and knit when my hands let me only scarf 's now my brain won't allow me to concentrate on any thing else.

I have been planing to do a craft fair for the past couple of years to sell some and raise money for lupus UK, but my body won't cooperate with my plans.

Karen x

[misty14 in reply to KarenC]

Hi Karen

Thank you so much, I'm sure your scarfs are beautiful. It's tough living with the restrictions of these illnesses. I hope your better soon. X

[pigsty]

Lovely piece of work. It is good to have something to focus on .....and then the pain sulks because it's not the centre of attention

Wei done

[misty14 in reply to pigsty]

Hi pigsty

Thanks for your lovely card compliment , lovely way to put it, wish the pain would sulk and go away more often. It wants to be the centre of attention too much!. Hope your as well as possible. Have you got a hobby?. X