Quick update!

Hello one and all,

Goodness it's been a long week unable to get on here, didn't realise quite how comforting I found this site until I couldn't access it!

Anyhoo, quick update, meeting with boss last Tuesday resulted in the fact they are offering me medical retirement. Apparently that means I will continue to receive the equivalent to 60% of my wages until age 65 but that I will be paid by their insurers and not my employer and my contract with them will cease. I have until October to decide, but at the moment can't think straight. If I refuse, my sick pay will end anyway in October so then if I am not well enough to go back I will have no money. Feel a bit painted into a corner here!

Today I had my long awaited (8 months) ultrasound scan on my hands. Quite painful but the good news, despite my right hand little finger heading east, is there is no sign of joint damage. But the downside to that is I am still no nearer to a diagnosis

Official line from the Rheumatology department now is that the Rheumatologist did not pack his bags and leave (as I had been told when they cancelled my last appointment with 3 hours notice) but that a 'speciality doctor' did a flit. Still don't understand why they blanket cancelled everybody's rheumatology appointments in that case, but the shock-waves have reached Tynwald (our parliament) now with several MHK's (MP's) demanding answers to the incredibly long waiting lists for rheumatology and orthopaedics and the fact that patients were given short notice of cancellations in a pretty unprofessional way. One patient had a message on his answerphone saying 'Your appointment tomorrow is cancelled as the doctor has upped and left' which is pretty much what they said to me on the phone too.

Really considering going to the UK for a Private diagnosis now, as I cannot see the situation at our rheumatology dept. improving anytime soon. Any suggestions for Private Consultants out there? I'm going to have to fund my own travel and accommodation even if I can get the works health plan to pay for the consultation..

Well that 'quick update' was a bit long in the end (sorry Summer)

Good to be back on here though!

JoJo

xx

[Hidden]

Oh that's all rubbish news apart from the lack of RA erosions of course. I can't believe how inadaquate the situation is re your complete lack of rheumy service and nor does the medical retirement sound great but I guess it's better than nothing? And I really think you should go to your MHK and find out if the Isle of Man health service would pay for your expenses and a private consultation as the NHS would have to do if they weren't able to offer you a service in the UK. There really has to be some kind of resolution to this situation soon for you. On the plus side it's nice to see you on the site again! Tilda x

[summer32 in reply to Hidden]

HI jojo welcome back I only managed to log on again the other day after lots of frustration.. do your maths and think is it enough to survive on?? you dont look very old and consider is it better for you and your health and if need be are you well enough/ could you get a non demanding part time job to top up income after a shor break??. when I last asked occy Health about medical retirement she said " Not at this stage", .

Nice post and nice to see you back too x

[Dotty7]

Hi JoJo

The ongoing situation with your health service sounds grim, as ever. I hope the new interest from parliament gets things moving. I know what you mean about being painted into a corner over the job, but it may work out better than you think. Out here in the land of the medically retired there is much fun to be had. Financially things are tight but it's nice not to have to worry about whether I am going to be able to be well enough to work effectively. On good days I garden and play ponies, on bad days I retreat to my sofa with the TV and my book, and nobody minds. I am healthier because of it.

Take care, Dotty xx

[helixhelix]

As Dotty said, there are advantages of stopping work - except where money is concerned! I left my job (took redundancy as couldn't face fighting for medical retirement) but it's been the best thing I did as my health has just been miles better since. Obviously you'll have to think hard about it, as depends how far away 65 is, and whether it will continue even if you get another job in years to come, and whether it's a fixed amount or will increase with inflation etc etc, but no doubt you've started to think about all of this. I also found that life was a bit cheaper once I stopped work, as I had the time to shop around for things, and cook nice cheap food rather than buying expensive rubbish.

But as for the diagnosis & treatment that's just awful, but at least it sounds as if someone if starting to take it seriously. Hope they manage to sort something out for you soon... Polly

[Someonesmother]

JoJo so sorry you are going through such a rough time and getting diagnosis is so hard. I can commiserate I am going through problems with diagnosis too, lucky though that the rhuemies haven't left the building! I too thought about going private but the only ones where I live are booked out no new patients so would have to travel to another major city 3 hours away to see one. I am in Oz.

Hard decision re medical retirement I don't think I would survive ion pension as it wouldn't even cover my rent each week but I agree with the others it would take the pressure off your body and therefore assist your health in a positive way. Oh lots of hard decisions for you good luck

[allanah]

hiya JO JO, well reading this i feel you have actually taken a step forward, although maybe you wont agree. I was given medical retirement two years ago, i didnt want it, and thought i would just get better and that would be it , i would stop thinking about the RA. Well lots of different drugs later, most of which havent helped me, i am SO glad , for me personally, i took it. In the winter i didnt have to struggle out in the cold mornings, i dont have to work in this heat. I can "pace" myself and plan my day and not have to rest all night and days off. My pension covers most of my bills and I ok arent going to Cuba on holiday but i am getting away to France in our caravan for a holiday, but things now are more important to me than cash. My health and joints are much happier now i dont have the workload stress and my husband and family are happier i am less exhausted, although blooming fatigue is a major issue for me still.

I worried about missing my "friends" from work, the real ones keep in touch, the others who werent really dont!!

i dont have to worry about, what if i get sick and have to take days off, and my staff being angry and stressed at me, i dont have to go to loads of stressful occy health and personnell meetings, I have time to go without feeling worried about arranging things for my days off, to physio and hydrotherapy. So for me this retirement has been good. I am unsure if I will still think it in a few years. But i volunteer for NRAS which i can do on the days i feel well enough and at times that suit me, i keeps my brain going and makes me feel well a bit like me!!

Your parliament does need to investigate the doctor situation urgently before it starts failing like the 14 mentioned in the press.

good luck, thinking of you Axx