Hi Vicky

Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS!

I'm Lyn, married to Mike, we have four children, Abby 23, Ian and Jake 17, and Louis 16. Like your daughter and Jenni's Michael my Louis is about to start GCSEs next month (well apart from the all the modular stuff already done!). All four are in various stages of education! We live in Thornton Cleveleys in north west Lancashire.

I was diagnosed with RA 23 years ago and have since run the gamut of medication and had lots of surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a jolly assortment of pain killers! Struggling at the moment after 12 months of operations, joint injections and uncontrolled disease. But heyho... that's life with RA!

You are going through a difficult phase but things will improve as you learn to deal with the idiosyncrasies that come with this cruddy disease. We get there and can live a full life despite the problems the little b****r throws our way! Be positive and try to stay in control ... RA likes to be in the driving seat, but don't allow it. I travel first class, RA goes in freight. I don't mind it sitting by my side when it behaves but otherwise it can sulk in a corner where it belongs! Your life Vicky, your body, you're in charge.

Look forward to getting to know you, and do pop along to the local Hillingdon meeting, you will benefit from speaking with others in a similar position

Take care,

Lyn x

Hello Vicky

Welcome to the forum but sorry you had to have RA to find us. When you are first diagnosed it is frightening and this is down to the fear of the unknown. I have learnt so much from the people on this forum and had great support. Someone will answer your question no matter how trivial you might think it is.
As suggested by other people, NRAS do some wonderful literature for family and employers and I left these lying around for people to read and they definitely got the message.

I am 48 and was diagnosed two years ago although they think I have had RA all my life but doctors kept on missing it. I have just had my first total knee replacement and at some point need the other one doing but I am determined to enjoy the summer when it arrives first before embarking on any further medical procedures.

I hope you get your medication and condition under control soon and keep posting.

Jackie
xx

Hi Vicky

Welcome to the forum. I've been away for a couple of weeks, so haven't had access to the Forum. I've found you on Facebook too.

I have found this forum and these lovely people a real life-line at a time when I needed such a lot of help and advice. It's nice to be able to ask anything you like and usually someone has an answer. These been some really helpful suggestions too.

I am 49 and married with 3 children. Only one permanently at home now (18, 22 and 23). My husband often asks where he can go for advice; but he has actually been really good. I was diagnosed 15 months ago. Now on Humira, prednisolone, leflunomide (low dose) and sulphasalaine (low dose). My right shoulder has been my biggest problem, which has now started hurting again since dropping the steriods! My goal for this year is to get out Kayaking again!!! (didn't make it last year, but I'm hopeful for this year!)

It is quite hard with kids deciding when and what to tell them! When they were all at home and I had Gullain barre - I sat them all down and we had a family meeting about what each could do to help me round the house. They all chose a different job - which was lovely. I'd have done a rota - but they all preferred to choose! Since getting RA, there is only my son at home. He helps me with all sorts of odd jobs round the house when I need them. In return I felt able to start making his packed lunch (which I stopped long ago) again. This was his all time 'hate' job!!! I felt better doing this as it didn't make me feel so bad asking for extra help with things like the washing! (lots of lifting).

I have played down the seriousness of RA to the kids, I must admit. My 22 year old has now been diagnosed with it - but I am being careful and optimistic with her! I've stayed positive and factual - especially as once the right treatment is found, for many people they can often do most things. Hasn't exactly worked for me yet...... but I'm still trying out the new drugs.

Hope you begin to feel a little better soon. I should be back on the forum now... til my next holiday!!

Anne x

Hi Vicky,

Sorry to hear you've joined our 'club' and are coming to terms with the challenges of RA.

I was only diagnosed in November 2010 so not long before you, and my disease is waaay out of control still. I'm 34 and don't have children - although with 6 cats it sometimes feels like it! - but am with you all the way on the emotional impact it has. I sometimes wonder if I'm losing it a bit - but of course it's just the RA (or drugs) and then things get a bit better again.
I tried sulfasalazine which didn't work at all and have been on steroids since February but, to be honest, they're not having any miraculous effect. I also have kidney disease which complicates the meds a lot and limits me to paracetamol only for pain relief. I've found the forum brilliant for support. Even just reading helps enormously and I'm going to make a big effort to post more often as it's the only place I can 'chat' to others with RA.
I'm on facebook too 'Vicky Cowles' so do friend request if you like - have been trying to keep FB looking super positive as I lost quite a bit of work after diagnosis and I'm self-employed.

I hope you start to feel a bit more grounded and in control soon...

Vicky x