Lets say well done!

[Jackie1947]

We moan when things don't go our way medically so let's see some positive posts when it does.

[sylvi]

That sounds like a good idea. I will post some flowers for you. xxxx

Wallflowers

[Neonkittie17 in reply to sylvi]

💗😍

[helenlw7]

What a good idea.

My positive news is that I’ve found an orthopaedic surgeon who will do me a knee replacement without me stopping my steroids - I am steroid dependent and can’t breathe very well without them. I was turned down by a different surgeon from the same hospital in 2018. I’ve been surviving on steroid injections since them - next 2 today. Just got to get to the top of the list now!

[Jackie1947 in reply to helenlw7]

Good luck!

[helenlw7 in reply to helenlw7]

thanks

[KittyJ]

People do post their good experiences on here often, unfortunately at the moment there are big problems with our healthcare system and people are suffering. A support group like this will have mostly posts about bad healthcare as it’s here to give support to people by those who are in similar situations. It can empower patients to feel that they understand their situation better and the advice can help people to get better healthcare. It’s not all doom and gloom 😊

[Jackie1947 in reply to KittyJ]

I'd like to see more of a balance that's all. It's not all bad

[KittyJ in reply to Jackie1947]

you’re never going to get all those people doing well and having good healthcare experiences posting a lot as they’re off getting on with their life. Those doing well on here do post to support others and help them to see there is hope but it’s usually as a reply rather than a post 😊

[AgedCrone in reply to Jackie1947]

I don’t know how long you have had RA …but  although there has been improvement in the drugs we are offered…..the number of clinicians available to diagnose & prescribe has not kept pace.And today, in all fields  ……many people do expect instant service…& say so……and when you are in pain you are far more likely to shout out loud.Twenty years ago someone newly diagnosed could be seen in a few weeks, had their tests etc & started treatment quickly…now to get  a first rheumatology appointment can take over a year…..that is not satisfactory…but it’s how it is in some areas. I do agree we need to see more good news posts……but  I can really understand when  people can’t get seen quickly…..or their drugs are difficult to obtain…they complain!The rheumatology  department  at my hospital has not recovered from losing most of their staff during the pandemic……we had 8 rheumatology nurses…..there are now 4, & unless you leave an alarming message you are unlikely to get a return call for a couple of weeks. That is something people want to share…because they need help….but posting that you can see your GP or rheumy at the drop of a hat on the NHS is only likely to upset some people who are patiently waiting weeks.It would be lovely to get seen & treated well & quickly…..but until more doctors decide to specialise in rheumatology……I’m afraid we are not going to be writing thev posts you’d like to read.

[Jackie1947 in reply to AgedCrone]

16 years

[AgedCrone in reply to Jackie1947]

So you will have experienced what I mean…..to suddenly be diagnosed & then realise you don’t float smoothly in to getting fast regular treatment must be a nasty wake-up call……so it it’s not surprising  sites like this bear the brunt of people’s disappointment is it? 

[Jackie1947 in reply to AgedCrone]

Im not getting into a debate with you in all respect but there are surely people who have good experience and I would personally like to read them. Of course this site is for letting off steam but also let's not be afraid to say good

[AgedCrone in reply to Jackie1947]

I do have a moan about my new GP, but having been diagnosed  20+ years I hope most of my posts here have been encouraging…..admittedly I was diagnosed post retirement……so I didn’t have the pressure of juggling work with RA…..that is really stressful…..especially with children to look after. But we all have different ways of dealing with all aspects of life……I think we all agree not enough people share their good news treatment wise…but I guess they think….why waste time typing when the old joints aren’t creaking & I can get out & about? I know full well from my friends , my Polly Anna attitude is not appreciated by everyone…..but it’s just the way I deal with things….It’s each to their own  isn’t it? 

[KittyJ in reply to Jackie1947]

No one is afraid, the posts are there, sometimes they get pushed down by other more popular posts but they are there.

[Mmrr in reply to AgedCrone]

Well said AC.

I have posted recently about my positive experience with my new rheumatologist.

But...and it's a big but...I did have to pay to initially see him privately to get the ball rolling. Five months on, I'm hoping the new meds arrive soon. There are others far worse off than me.

[AgedCrone in reply to Mmrr]

Yes it is a fact that these days we often have to have a private consultation to get on the right track….but I feel if going without something & saving to pay to help you feel better…it is your  right to do just that.It’s all very well saying you “don’t believe in private medicine”….but if you are in agony, have nobody to look after &  feed you …..& by paying you can get better, & stay out of hospital……hence releasing just one bed……it’s a personal decision & nobody’s business but yours, 

[Stayloose]

Some people on this forum really struggle with their care from the GP Surgery. Yesterday, our practice sent us a generic invite to join the Patient Participation Group. This gives opportunity to suggest ideas and positive changes. We have little contact with the surgery, but if you do it's an opportunity to be proactive. Just a thought.

[Jackie1947 in reply to Stayloose]

My RA my GP is in the loop but medication,blood tests, etc isn't carried out by him but Rhuematology direct.

[katieoxo60]

I am not going to post specific instances but think in general many parts of the NHS work well due to dedicated staff and volunteers. Many faults are due to system problems as the process

has to be followed. But a good suggestion. Remember people tend to recall the bad things most as they usually cause trauma even if only emotionally. I personally have experienced good and bad, personally I have been on a patient participation programme too.

[Jackie1947]

No intention to upset people. I've had my own issues over 16 years of RA but I'm not being bought down by negative thoughts and I love to read good solutions and probably people don't talk about it to encourage others for fear of upset.

[Sandy44]

HI I've never written on here before. My name is Sandra. Had RA/Lupus for 25plus years and have had some bad times......BUT the last 19 months I've been on Baricitinib and I've not looked back.. I've got my life back.

[Jackie1947 in reply to Sandy44]

Wonderful. You must be on top of the world.

[Sandy44]

Yes it's a lovely feeling I must admit, after being stuck in the house from week to week and when going out being pushed in a wheelchair or using my scooter for many years. Tried loads of different drugs that stopped working so then back on the old faithful steroids. I wish everyone could experience the same feeling. I was in that black hole and couldn't see a way through. Hope you are well.

[Jackie1947 in reply to Sandy44]

I've had depo steroid jab few times pre Benipali my wonder drug. CBT helped immensely with weekly sessions. RA isn't going to win.

[sunnyweek in reply to Sandy44]

Just wondering if you needed to do leg strengthening exercises after using your wheelchair and scooter and how you did this. Thank you.

[Sandy44 in reply to sunnyweek]

Hiya, my muscles did weaken in legs and arms and I couldn't do much to help get it back to be honest. It's only the last year that I've noticed I've got stronger because I can walk round a supermarket and also short distances outside, turn taps on, shower myself, clean teeth ect ect everything people can do without illnesses. So really it's my medication that has helped with all this.

[sunnyweek in reply to Sandy44]

Ok thank you, I've spent so long doing less that I know I've got to strengthen up. Maybe starting your walks etc has made a difference too, as I'm not sure my medication itself has made me stronger in the past but it has made me more supple so therefore easier to do things. I know I need to exercise and move more.

[Sandy44 in reply to sunnyweek]

Sorry what I meant was that my new medication I started 18mths ago has given me the ability to walk again so hence the walking and housework has helped strengthen my muscles back up.

[sunnyweek in reply to Sandy44]

Ah thanks I was wondering if I could ever get my legs stronger so more exercise is the way, thank you for sharing.

[Sandy44 in reply to sunnyweek]

Yes I would say so as long as your feeling up to it. Good luck xx

[Sandy44]

You have a great outlook about your RA. Keep well.

[Green230461]

Had a shoulder replacement done four years ago. Each year my consultant has asked for an X-ray and sends a letter to say I am fine. Great NHS consultant in Broomfield hospital!

[Jackie1947 in reply to Green230461]

Thats good news and it's good to read positive posts

[HappykindaGal]

Yes! I’m with you. Negativity tends to bring people down, including yourself and is unhelpful. (Only need to watch the news for proof of that).

When I start to descend into negativity, I give myself a good talking to and/or spend an hour with my mindset coach and it soon goes.

I don’t see my rheumy much. I occasionally have a phone call. My GP surgery is great. Not sure many of them know much about RA, but they know if I say I’m flaring that I’m not making it up and ask me what I want to do.

I’ve been literally to hell and back the last three months and I still keep positive. I always ask myself, will it matter in 6 months and mostly the answer is no so why fret about it now. Deal with what you can deal with, the rest there’s no point wasting energy on.

Love this picture.

Squirrel running with nuts