I've had RA for 26 years & yet I'm still 'learning!!' - NRAS

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I've had RA for 26 years & yet I'm still 'learning!!'

ButterflySue profile image
β€’25 Replies

This is my first time for posting anything on here, although I've been following the forum for many months & read it every day. I just want to say 'thank you' to you all, because frequently there are posts which have applied to however I'm feeling at the time & my eyes suddenly 'water!!'.πŸ˜₯

Although, obviously, I wouldn't want to wish all this rubbish on anybody, it's so reassuring to know that you're not alone dealing with it all. Nobody can possibly 'get it' unless you've 'got it'.

Thank you 'Health Unlocked' for making it possible to connect with 'like minded (bodied) people, which often leads to finding out so much helpful information!! πŸ‘β˜ΊοΈ

Best wishes to you all, Sue...in sunny Spain πŸ˜ŽπŸ€—

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ButterflySue profile image
ButterflySue
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25 Replies
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Welcome to the forum & glad you've stuck with us. As you may have gathered, we're a friendly bunch & we're not all doom & gloom.

Ruth.

From sunny Telford in Shropshire. 😎🌞

ButterflySue profile image
ButterflySueβ€’ in reply to

Hi Ruth, thanks for your reply...I'm going through a particularly bad & long flare at the moment, mainly due, I think, to loads of family stress over in the UK!!...

Glad that you're getting some of our sun in Telford.......enjoy!😎🌞

keeta profile image
keeta

Hi lovely .even if we don.t take part we read them daily and yes its a great help.also when you are feeling low.theres a friend .near .over the years i.ve been helped so much .welcome lovely .kathy from sunny wales xx

ButterflySue profile image
ButterflySueβ€’ in reply tokeeta

Hi Kathy, thanks for your reply. You're right, it's good to know that folks on here really understand. Being the 'invisable illness' it's difficult to explain how you really feel...it's far easier to say 'I'm ok!!' Enjoy the lovely sunshine!!😎🌞xx

keeta profile image
keetaβ€’ in reply toButterflySue

They are my favourite words i.m ok .and if i am worried.got a problem .i know someone here understands .welcome lovely xxkathyxx

ButterflySue profile image
ButterflySueβ€’ in reply tokeeta

Thank you x😊

JayneN profile image
JayneN

Welcome to a great bunch of people . The forum we’re we all understand what each and everyone of us are goin through x

ButterflySue profile image
ButterflySue

Hi Jayne, thanks for your reply & welcome. Looking forward to 'joining in' now & again!! x

Ruth12345 profile image
Ruth12345

Welcome. Look forward to hearing how you are doing as and when you feel like saying. I so agree with the sentaments of your first post

ButterflySue profile image
ButterflySueβ€’ in reply toRuth12345

Hi Ruth, thank you 😊

Ruth12345 profile image
Ruth12345β€’ in reply toButterflySue

πŸ™‚πŸ™‚

nomoreheels profile image
nomoreheels

Hiya Sue. Just wanted to say welcome, I hope now you've written introducing yourself we'll see you around. I'm sure being a veteran of 26 years you've plenty of experience to share with us & we'll help wherever & whenever, as we do!

From an ex-expat of 11 years now back on the sunny Fylde Coast. We're driving over to Spain the weekend after next, just hope the heat hasn't cranked up by then! β˜€οΈπŸ˜“πŸ˜Ž

ButterflySue profile image
ButterflySueβ€’ in reply tonomoreheels

Hi, thanks for your welcome. Ah you're an ex pat as well! Why did you move back? I've often thought about it, although Hubby not so keen!! Having just had to spend an unexpected, extended visit...not so sure!! Have a safe drive over here & enjoy your visit. Lovely temperatures at the moment, but as you know, July & August...phew!!πŸ˜³πŸ˜³πŸ˜‰πŸŒžπŸ˜Ž

nomoreheels profile image
nomoreheelsβ€’ in reply toButterflySue

Primarily family reasons. My h's mum had Parkinson's & Lewy Body Dementia & his dad, who wasn't in good health himself, was (reading between the lines) finding it more difficult to cope & would not place her in a nursing home. H's brother was as much use as a chocolate fire guard & we were able to leave the business in good hands so the decision was made, we came back in 2013. Both his mum & dad have since died & h isn't so keen on returning as he's not in the best of health (complications following double heart bypass) plus he's on the other end of a laptop if work needs him. We're travelling over to the Costa Blanca to sign contracts to sell his dad's house & bring back bits & bobs h wants to keep. Plus of course our Spanish shopping, stuff we miss like El Corte Ingles coffee beans, Anise, a hand cream I can only get from a farmacia... it's like the British things you probably miss but in reverse!

Sorry to hear you've a had a stressful year. RD & stress aren't good bedfellows are they? I hope things will improve & you feel better soon. Where about are you Sue?

ButterflySue profile image
ButterflySueβ€’ in reply tonomoreheels

Hi, sorry to hear about all your family's problems...sounds like you're getting sorted now. Thank you for your good wishes.☺️

We live halfway between Alicante & Murcia, in quite a small, but expanding village. Just inland from Guardamar, which is our nearest beach. We didn't want to live in 'a little Britain' but had to be close enough to hospitals, doctors, shops etc. We seemed to have got it right...only by luck!!! 😊

nomoreheels profile image
nomoreheelsβ€’ in reply toButterflySue

We lived near Alicante but the other side, inland from El Campello & Muchamiel. We know people your way as my h used to work in Santa Pola so many of his colleagues were within 20 mins of work. My Consultant was at San Juan hospital.

premierscfc profile image
premierscfc

Welcome to the friendly forum from Super Sunny Staffordshire

I feel the same, I've been a member of the RA club for 25yrs and this group has definately taught me a few things since I joined and the group support is always welcome.

Phil

ButterflySue profile image
ButterflySueβ€’ in reply topremierscfc

Hi, thanks for your welcome. 😊

Elswick profile image
Elswick

How have you coped for 26 yrs with this painfull disease I have only had it a while and had enough now i truly admire people like you and you give me hope πŸ˜‡x

ButterflySue profile image
ButterflySueβ€’ in reply toElswick

Hi, thank you for your reply & your kind words. ☺️

Probably because it was diagnosed early & I was 'relatively young' at the time, the meds have managed to keep it under control. It's only now, after a very stressful year, that I'm going through a particularly painful flare. There are new meds on the market all the time, so there's always something new to try. I think reading the forum, you realise there's always somebody worse off. Try to keep positive....& most importantly, however hard, don't lose your sense of humour!!..πŸ˜‰πŸ˜Š

AgedCrone profile image
AgedCrone

Do you find there are plenty of Rheumatologists in Spain? As you will have gathered they are scarce here in UK, especially the good ones, & many people have to wait months between appointments.

Also.....is RA & Auto Immune disease widely recognised in Spain.....here 90% of the population think those of us with RA are ex athletes who overdid the exercise! If only!

ButterflySue profile image
ButterflySueβ€’ in reply toAgedCrone

Hi, yes there are several Rheumatologists, at least in the area where we live. There is a relatively new hospital which is great & the Rheumatologists that I've seen there have been very understanding & knowledgeable about the disease. They do seem very young, but then so do the Policia...& they all have the responsibility of having guns on their belts!....so I think it might be an age thing on my part!!☺️

We don't have a nurse as contact between yourself & the Rheumatologist here. But she/he prints off your next appointment & blood test to take with you when you leave.

There seems to be quite good communication between the local G.P & the hospital, which I think is so important.

....& then there's the weather...no shortage of vitamin D!!🌞😎

I think because RA is an 'invisible illness' & particularly when you have a 'glow' from a tan, the general public's observation is that 'you look so well!!' So it's often easier to just say 'I'm ok!' πŸ˜‰

AgedCrone profile image
AgedCrone

Yes I find the same...I look perfectly fine & even friends keep telling me I'd feel better if I stopped taking " all that medicine".

I just nod & ignore them...but for now I'm on meds that agree with me & I am "fine"...so like most of us I just get on with it! Not much else to do really is there?

But at least in the last few days it's been hotter than Spain here!

Hattie23 profile image
Hattie23

Thanks Sue. I'm 26 years of RA and Sjrogrens this July so feel for you too. Agree we still learn everyday. I've only been reading this forum for a couple of months but have learnt two important things so far. keep up the good work everyone and keep writing and keep smiling XX

Hattie

ButterflySue profile image
ButterflySueβ€’ in reply toHattie23

πŸ‘πŸ€—xx

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