just to let you know

Hi, I've just read Sci Queens blog and its spurred me on to tell you what has happened last week.

I saw the physio and as you remember maybe he gave me a list of things not quite right and need treatment. I then saw the Rheumy consultant and she was lovely. She examined me and said i also have inflammation where the liagaments attach to the bone, Also the capsules in my shoulders are inflamed. She also agreed with the physios technical assessment and all the things he said were wrong like carpal tunnel on my wrists.

So to cut a long story short she says my RA is still unstable and that i should continue with my Enbrel but change sulphalsalizine after a month break off it to leflunomide. So work now know that I'm still unstable, need mri scan, change of mediation, acupuncture and physio. And getting new shoes from podiatry. I have got a union rep to come with me to the meeting booked with my boss and personell, so the rep feels it will be medical retirement. So I've asked for a pension quote from work and asked for a DLA application form and now quite frankly terrified.

On one hand they say i cant work, on the other hand I dont know what i'll do to keep me occupied and worried about applying for the benefits, but when i read everyones problems about getting sick or struggling at work i think maybe its time to leave. I'm going to the North East patient conference this weekend so will try to get advice there.

Oh well, going to get my nails done!!!

Axx

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  • Allanah i get my nails done every three weeks and they are all different colours. Don't be put off getting dla,it is a lot of form filling,but if you get retired medically unfit that should help your case for dla. There is a thing called d.i.a.l. get onto them and they will help you fill in any forms and help with appeals.

    You could become a volunteer on here as you know a lot about your disease. When i was accepted it was a big moral booster as i felt i was useless,but when they said yes it made me think i still have something to contribute. You will be surprised what you will do to fill in your time.

    TAke care sylvi.xx

  • oh Sylvi, Thanks. I think i would like to volunteer but i usually make jokes that no one seems to get or go on to long and bossy, i will need to work on getting the middle ground, so i'll practice and maybe nest year when i have had it two years and dont cry as the problems are all like mine!!!llol I'll look into getting help with the forms from dial thanks.

  • i get your jokes allanah but what does that say about me????

  • lol, your name says it all!!! axx

  • Hi Allanah

    I have responded to you via my blog in your section - please have a look as I saw that first!

    If you plan to apply for dla, I would say apply, as every person is unique. I will probably try again if my knees swelling turns out to be bakers cysts as that further affects walking. Then again if I don't apply I can live with that also. Right now I don't know and its does not seem to be inportant. Getting over this secondary infection that I have is my priority as I am fed up of feeling like a crapper.

    It's ok not to have firm plans for the future as just living is also ok. What ever you decide is good for you, and when you decide is also good. If you are unsure do nothing, that's what I do, and until I am sure I won't take the anti tnf. I must be sure its right for me and that I will indeed benefit or what is the point?

    Having all the infomation is important, as well as seeking informed advice. When you are ready you will make the right decision for you.

    Good luck hun

    I'm thinking of you Sci :)

    Ps take all the time you need, you never know what's round the corner!!!

  • Thank you, you have me in tears now!!!Cant wait to see round this corner and hope there's some light there as well. () Axx

  • Hey Allanah oh my goodness the next stage of your life is right around the corner how exciting. Hope you get the dla, which will help a bit i'm sure. Having ra is an expensive business I have found.

    I would think that you would fill your days rightly, what with all the appointments etc there are times i think that i can't fit work in. I can also remember being of on maternity leave and wondering how I would fill my days (my little babies were great) and by the time i was returning to work it was taking me all day to do an hours housework. Think of all the time you could spend at the nail parlour.

    You could give Sylvi a run for her money.

  • yep first task nails! Second task wrinkles Axx

  • Hi Allannah,

    Just wrote a blog myself after a long absence. It is a difficult decision, and I think I would take a break from work, before quitting altogether. I have a friend who retired delightedly at 50 and after a year gor another job as she was bored.

    Having said that you need some time for RA, I just dont know if you will always be like you are now, it is the same for me, so I am taking some extended illness leave, surely your doc will certify you for some time.

    Well what ever you decide, think about the pros & cons, I am really enjoying not working, but still feel as tired as ever??

    Think I will probably limp back to work Aug/ Sept, if I dont need further surgery on ankle. We are all very hard on ourselves. Mother, sister, aunt, boss, RA patient etc etc. Take some time.

    Regards, Gina.

  • Ah i didn't think i had that choice on medical retirement, I know they cant keep this job open as they need a replacement so will ask the union rep about it, thanks

    Axx

  • Hope all goes well with the meeting at work and with the DLA. Jokes are a tonic, they make everyone smile even when they are down so keep on being light hearted. Wendy x

  • I love your sense of humour, Allanah, it inspires and encourages me! I admire the mind that can think of comedy in the midst of so much distress! Lxxxx

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