Just like to say a big thank you to Dspooky for his off topic musical quiz. He kept us going through lockdown making us use our grey cells and taking our minds off RA concerns. It helped to free us to chat and has bought our community together.
Off topic I miss Dspooky pictures : Just like to say a... - NRAS
Couldn't agree more. Well deserved praise!! 👏👏👍
Not that i get the answers, but i love the games. xxxx
Hear hear Green. Also, I hope all is well with his dad and that he's recovered and out of hospital. 🤞
Oh goodness, I had no idea. I hope so too🤞🤞
Hi Kags. Yes, that's why spooky stopped it. xx
Unfortunately, must have missed that post. I knew he was off on holiday recently, and having lost track of time passing, thought it must be to do with that. Thanks for making that clear. Hope you are ok xx
I'm not too bad thanks Kags, how are things with you now - any better or is that a silly question? xx
About the same thanks for asking!😳 Rib/back pain was improving, but Tuesday night I twisted slightly and something popped and pain came back instantly- grrr! Leg (femur) still same. Eye op due Monday. Was supposed to go for pre-op covid test today, but big accident outside our house and road closed most of today! Thankfully rearranged it for tomorrow. Who knows what tomorrow will bring - haha!! Onward we go ........!😉
Glad things aren't too bad for you. Hope it stays that way (or even better, improves)!! xx
I'm sorry to hear that Kags, it's all so frustrating and annoying - one step forward two steps back - what a true saying and quite typical in these times. What is your eye op for? I'm glad you were able to rearrange your test for tomorrow - I hope that goes smoothly! 🤞 xx
Yes, it definitely feels like one step forward and several back atm!! Test rearranged for 12.40pm tomorrow so barring earthquakes, floods or the apocalypse coming overnight, I should get there!!😉
My eye op is for something called Conjunctivachalaisis. The usual nonsense - not very common but sometimes happens in longstanding RA. Rheumatologist had never heard of it. It's an overgrowth of conjunctival skin on the eye. Normally they would leave well alone, but mine has been busy and keeps growing. You can see it very easily now - looks like a little clear skin puddle sitting in lid margin. The problem is, it's moving up & down across eye when I blink and affecting sight, and causing even more dryness and irritation. Keeps causing burst blood vessels too. As it's my remaining sighted eye, need to keep vision as sharp as possible.
Apparently it's a fairly minor procedure, but not done very often. Just a bit apprehensive as it's my good eye and tiny bit worried about upsetting it and it becoming inflamed, but can't be helped. I was told it's like having a tummy tuck on your eye. Just hoping I might look thinner afterwards!!😳☺
Thanks for your kind wishes xx
Best wishes to you hope all goes well
It's always something Kags isn't it, such a nuisance. How unusual, but as it's a minor op hopefully it's not a complicated one. It sounds like it's really aggravating when it keeps moving up and down your eye but obviously needs doing when it's causing burst blood vessels. I hope it all goes well for you, just another problem in the life of RA. Will you have to wait long to have it done once you've had your test tomorrow? I would think they will give you drops to help afterwards - when I had my surgery I had steroid, eye pressure and antibiotic drops and it was fine. All the best with it all. xx
Hahaha - I doubt that you'll be looking any thinner - wishful thinking there Kags?
Yes, hopefully it shouldn't end up being a complicated procedure. Tje skin is very annoying moving up and down when I blink, and is on the brink of coming over my lid margin and poking outwards now. That almost happened a couple of weeks ago and I hadto effectively poke it back in!!
I've got to be back at the hosp on Monday at 9am for the op. Covid test has to be done so many days beforehand. (Usually 3, but will have to be 2 because of the accident today). I've had a number of surgeries on my other eye, so used to the drop routines thankfully. Having said that though, I have to use steroid, pressure and antibiotic drops every day alongside the lubricants to keep the other issues under control. Hopefully shouldn't be too different!!
Hope your eye surgery went well.
BTW, definitely wishful bordering on fantasy thinking about looking thinner- haha!! 😊😁
Oh my goodness Kags, it sounds like a real nuisance, how unpleasant for you and having to use the drops every day too. Still, hopefully it helps so that's the most important thing.
At least you don't have to wait long for the op and then it will be over and done with. You've certainly had more than your fair share Kags that's for sure. All the best. xx
Aah, thanks again. I guess the drops just become another part of the routine don't they? As you say, whatever helps and all that!
Yes, op will hopefully be over and done with soon. Been on list since last November, so not too bad. Obviously, I just hadto throw myself downstairs etc in the meantime!! Just can't get enough attention, that's what it is!! xx😉
😆😆 Not that you throwing yourself down the stairs is funny, just the way you said it! I hope it all heals really well Kags. xx
Hope it goes well for you🌺
Thinking of you and wishing you good luck with your op. Hope it goes well X
Wishing you all the best for your eye op Kags. 💗xx
Thanks NK. Very kind of you. Hope you are ok xx
Oh to be thinner shame you can’t spin the table 😁😂I’m sure it will be ok . The surgeon no doubt have all his understudies watch or he’s recording no way is this going wrong . Good luck but you won’t need it x
Wishing you all the best for the eye operation. Hope all goes well. I have ongoing eye problems with RA so I think I understand your concerns. Wishing you well x
Thank you so much. That's very kind of you. Sorry you have eye issues too. I'm sure you understand it all only too well (unfortunately). Hope yours are as stable as possible xx
I've been going to the eye clinic about 16 years. Went monthly for 4 and a half years. Now 6 monthly although it's usually longer cos of demand I think. I've had macula traction, episcleritis, intermediate euvitis which has caused long term fluid at the back so needs monitoring as it can become sodden he says! Had to laugh at that word sodden! Dread the scan for results. And lost some sight in one eye can only really read one line on the chart now with that eye. Plus both cataracts maybe cos of all the steroid drops over the years but he said just my age. Then both new lenses filmed over so they were lazered. He said that doesn't happen too often but mine did! RA eh.
Anyway I know you have had RA long term as well so I'm wishing you good wishes for the best result and a full recovery from all your current things you are dealing with x
What a lot of treatments you are very brave 🌺
Sorry for my late response. Had a trip out to hospital to get pre-op covid swab done. I'm sorry you've had so much going on with your eyes too. Scary isn't it? You've obviously hadto deal with a lot (one way or another) over the years too. I'm grateful to say I haven't had any macular problems (I'm afraid I don't really know much about macular problems but am happy to be educated about it if you wish to share)! Thankfully, no experience of Uveitis either, although I imagine it to be painful. Sodden, eh? Makes me think of it squelching ..... wouldn't that be unnerving! Hope it's under control. Sorry you had problems with cataract ops too. What a nightmare. RA likes to interfere with everything doesn't it?
I've been under care of Moorfields for 27 years now, but with shared care locally at present. Most of my eye issues have centred around corneal inflammation and corneal ulcers, predominantly in my right eye. I experienced something called rheumatoid/corneal melt several times. Basically, where the ulcer is, the cornea thins and melts and in my case, perforated. The only remedy is a corneal transplant as you have a hole in the front of the eye! This happened 4 times over 4 years. As they couldn't get the underlying inflammation under control, they ended up doing something called a conjunctival/gunderson flap on my right eye, which is why there is no vision, or perception of light. It looks a bit strange now too, which does get stares and sometimes nosy comments, but I still have the eye just in case one day in the future .......! In amongst this I had a cataract done too which was caused by all the trauma to the right eye. Thankfully, that went fine. Also, hadto have a trabeculectomy as I turned out to be a "steroid responder" so get high pressure with steroid drops. Don't know if you have that one?! Finally, I've had bouts of relapsing Scleritis, but under control at present.🤞🤞
I would never have dreamed there were so many issues that affected eyes due to RA, and I'm still learning more from reading about others such as yourself. Very useful and interesting. Also shows how many others are going through similar(ish) things.
I saw your profile, and unfortunately, you are a long-termer too! You have my commiserations although I can tell you haven't let it take over your life, which is not always an easy thing to do! We can only try and get on with it all as best we can, I think- for good and bad!!
Best wishes and thanks again xx
What a catalogue of ailments you poor thing! I have had issues with uveitis but nothing on your scale you are very brave. 🌺
Hello Kags thankyou for your response and sorry for my late reply.I hope your pre-op Covid test went ok.
Gosh what long term eye conditions you've coped with, gold star. I have seen the cornea clinic when I've been to the eye clinic and know the ulcers can be problematic, sorry you've had to deal with all that and I hope something can be done one day for you, you deserve the best.
Scleritis I believe can be very painful. I hope it stays away for you. My episcleritis and uevitis occurred when the inflammation wasn't under control, took many many months around menopause time. But the net results mean ongoing visits as the fluid has stayed and needs monitoring and treatment if needed. They inject a powder which mops the fluid up and lasts a few months.
I'm fortunate that the steroid drops haven't bothered the eye pressure so grateful for that. Sorry you had bother though and hope its alright now.
Macula traction is when the jelly in the eye attaches itself to the macula and pulls in away. The optician discovered that as I made an appointment because lines of writing became wavy and she rang for a taxi to take me to the eye clinic. I lost two lines of sight then and the surgeon said if people lose three lines then they operate, and sometimes the condition rights itself and the jelly detaches itself. Mine detached and I was so grateful, but those few months waiting I was very anxious.
I think you do extremely well and are very positive.
As I've got older I'm more aware of it as mobility has got worse and the fatigue is there so it does restrict things. Every joint is affected, but I'm used to it and biologics weren't available for years. My mum used to say 'you never moan'.
Like you say we can only try and get on with it as best we can, I admire you greatly, very positive, and I hope you'll soon be fighting fit x
Thanks for your kind reply. Very interesting to learn about your eye problems too. I will respond more fully, but it might not be for a few days due to op tomorrow. Didn't want to you to think I was being rude! 😄😉x
Of course not, its good of you to reply. I'm wishing you well for tomorrow that's the main thing xxxIf there's ever anything that you would like to know or ask you're welcome to message via the chat, I wouldn't want to miss a message or take over this post, I'll be thinking of you tomorrow xx
Thank you so much. I absolutely agree about taking over the post too - I was starting to feel a bit guilty about that - not what was intended. Thanks for your good wishes. Take care xx
Good luck K about time something goes your way xx
Aaw, thanks A. I do appreciate it. Just hoping it all goes OK. Hope you are still feeling better (hardly dare say it)?! Hope that tummy is OK too xx🤞
I’m doing ok RA pretty much kicked into touch at the moment.tummy behaving it’s fibro who’s a bugger but starting to enjoy life again 😁just need Covid to do one then I can hit the town 😂xx
Wow! Now you're just showing off! 2 out of 3 things behaving, I'm thrilled for you. You bloomin well deserve it. If only the fibro would bugger off too!! (Along with Covid, of course). God help the town when you hit it ..... it won't know what's happening - haha!!😆
So glad you are enjoying life again. So lovely to hear. Don't overdo it though- behave!! 😊xxx
I’m trying but it’s hard 😁 your turn for a bit of luck xx
I agree. I really used to enjoy them too.
Hear hear ...
Totally agree Green, he is missed very much but totally understand he need to be with his father and family. I was only thinking about Spooky the other day so thank you for writing this post. Hope you are keeping ok? Sending you some warm, sunny and supportive wishes, take care xx
Gosh, I missed that post, I hope all is going well for Dsoooky. He really brightened life up and kept us all going through lockdown. If truth be told he deserves a 🥇So big thanks to Dspooky.
Yes! Thanks for all those hundreds of posts Dspooky! No idea how you did it but you deserve a medal for providing entertainment on a daily basis. It was a musical marathon. All the very best 👏
I didn't take part very often, but loved the posts and answers.
I really miss the daily posts and often got the right answer although it was always finished by the time I saw it. I had been wondering why they have stopped and didn't know about Dspooky's Dad being in hospital, so I hope things are soon better for them both.
Dspooky was amazing at thinking up so many musical quiz photos for us to guess and deserves a massive thank you.
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