ups and downs

Hello you all!

Been a while cos everything has been hard recently. So last time i said i was still not controlled with the RA and getting retired. So that has just about gone through but of course as is the NHS they are quibbling over a couple of days pay (which i Know I worked) even though for years i worked over hours and extra days and night and on call for nought, ah well. Having a retirement lunch on Thursday so it will be nice to say goodbye properly as I was dragged to the GP and never cam back a year ago!!

So I have had very bad flare up, and got so desperate I went to the consultant and waited outside his office till he came out of a meeting and demanded he see me before he went home!! I know I cant believe i did it either.

But I got an IMMEDIATE steroid injection and for the first time i have had about a week with pain about 4/5 instead of 8/9. They had taken me of my Enbrel and Arava as there has been (if you remember) a lot of problems with my neck and shoulders and I had an mri scan. He looked at the results and was worried! Told me I would have to see Neurosurgeon quickly! So that went ahead and i have 4 discs burst, lots of nerve involvement, compression of the spine and pooling of CSF mmm....

So I got sick of waiting around to get neuro appointment ( this is urgent?) so I paid £300 to see one privately and what a difference. I was worried as I had been told i might black out so wasn't driving, he said I would not so i could drive, he told me my RA is too unstable so he would not operate immediately but I will need a closed body mri scan on the whole spine, i freaked off course...dont like them, but he said i could have a anesthetic, thankfully. He kept asking do I have any more questions and i was in half an hour wow!! If i won the lottery i know what i would spend it on now, i thought he was gonna make me tea the way i was getting treated!!!!!

so I'm a bit in Limbo waiting for the RA to settle, waiting on the operation, waiting for an MRI scan but positively i got morphine tablets..brilliant, steroids brilliant, can drive brilliant ..and seeing Rheumy who has now REALLY seen me and wants to see me the day he's back from his hols at the beginning of June. So hopefully it will all come together at last.

Sorry I am gong on a bit but when I couldn't type it was hard to read everything and not be offering my works of wisdom rofl

Enjoy the good weather whilst its here, it really makes me more ocmfortable.

Love Axxx

15 Replies

oldestnewest
  • It's good to know that at last you are being taken seriously.

    Hope that your retirement 'do' goes well.

    I was worried about not working at first - couldn't see myself enjoying it as I have almost always worked full time but guess what ........ it's great. Don't know how I managed to work full time and get everything done at home.

    Judi

  • I agree with judi i hope the lifting of work related stress will help you feel better. Retirement has helped me. And your stand to get proper treatment us brilliant! I hope youre well for your do

    Xx

  • Allannah, good luck on your retirement. I paid to see knee consultant and as you say mine was brilliant. He has even rang me at home before the op twice to see how i was. Like you i wish i could afford to have the op privately,but i couldn't,having said that i was treated very well when i went into hospital. I was the only patient on the surgeons list that day.

    Its hard work getting people to listen to you isn't it. Lets hope that the future is rosy for you allannah.

    love sylvi.xx

  • hi allanah,first let me say enjoy your retirement, it takes a bit of getting used to,but if you plan things to do, [body permitting] you will soon get in to it,and next would like to congratulate you on your achievments, have felt like doing that myself a few times, and like scouser says lets hope everything comes together at once, have a lovely day and take care, sue x

  • Hi Allanah,

    Happy retirement, hopefully with less stress you will feel a little better.

    I also have a picture in my head of you jumping on the consultant as he came out of his meeting lol, good for you, maybe more of us should do the same!

    I hope you are not hanging around too long for MRI etc. Least now they seem to be listening to you, so hopefully you will get your meds sorted sooner rather than later.

    Enjoy your get together on Thursday.

    Best wishes

    Mary

  • so good to hear you are feeling bit easier ,and things sound positive for the future ,x

  • that is a good appointment Allanah but it is dreadful that you do have to go to such extremes just to get to see your consultant. Poor you. Are you on no medication at all now.

  • hi, when i jumped on the consultant,( in my defense, its the worst i have been and my nurse was even crying!,) he started me back up on the ra drugs as they thought the spine was not infected but inflamed. So been back on the arava and enbrel for a week, but whatever dose of steroid he gave me for once really made a difference. So think when i see him in June i just have to say i haven't had a painfree or painless day since this started march 2011. That will worry me though cos i have been on so many biologicals now i wonder if the protocol will allow me anything else.

    But just need to be brave now. Ian has a family private insurance that i have just called and even although they dont have any neuro guys on their list they are gonna let me be treated( I INSISTED again! cos we have paid every month for 30 yrs and not used it,) gosh i'm getting stroppy !, so they agreed i could use a doctor of my choice and i chose the one i saw last week, so yeah,!!!! again another step forward.

    Anyway we are off to the caravan friday to tuesday to Alnwick castle and gardens and eating in the tree house on sunday, so I am very excited. Katy is taking a friend with her so that makes it easier for us!!

    Hope u having a nice jubilee weekend. Axx

  • Oh but still have to pay for last weeks appointment!!! Axx

  • ah thats how you get things done - jumping on consultants.......... Enjoy your holiday this weekend. If I had private insurance i would be on the phone all the time to them so good for you.

  • Good luck in your retiremen

  • Thank you for your kind wishes.

    It just seems a little early at 52! But I will need to learn to cope again! Axx

  • THanks everyone for all your kind comments, getting m hair done today for tomorrows lunch. Don't know how I'll manage the hair wash with this bad neck thing!!

  • It is so hard too accept like you I have nursed in the NHS FOR 35years. Only recently been diagnosed, also jumping thru the red tap of reduced hours versus retirement. Good luck. Sending hugs your way. Carole

  • Good news on that appointment well done it sounded very good , enjoy your early retirement. I got home knackered today xx

You may also like...