Just when I thought I,d got this disease licked......... - NRAS

NRAS
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Just when I thought I,d got this disease licked.........

I can hear you all laughing, what on earth is she taking that she thinks she has this disease licked......well what I really thought was it is getting under control and everything is going to be fine and since it has been three months ( a delusion of mine that three months is more than enough time to get this fixed) since I was diagnosed decided it must be about time for all this to be better. IV steroids four weeks ago had given me two amazing weeks where the pain was minimal and had so much energy , started cooking and baking, even made some lemon curd but quietly and sneakily I became aware at the beginning of the week that some pains were coming back. No problem some co-codomol ( will just have to put up with constipation- eat more grapes and lots of beans) and Cellebrex will just keep that at bay, few days later find myself in tears realising that in four weeks I am travelling to the US, on my own, a trip I used to do four times a year without a second thought, and now I am not sure I will be able to get from one terminal to the other, how am I going to move my bags about, get through customs on time for next flight ......oh the panic. Out of the blue one of my colleagues phoned me, we have never discussed my disease however somehow she knew and we started taking about the forth coming trip and I expressed just a little concern, and her advice was invaluable....phone the airline, tell them the situation and let them help.. Well I picked up the courage, and phoned BA - they could not have been more helpful, of course more tears, now I have assisted passage from start to finish, three flights, two transfers and seats booked to give me plenty room to move even although I booked economy. Can I take my walking stick on board, she quietly laughed and said of course.....more tears, from me obviously

And so just four weeks after the last steroid injection, still only on 10 mgs of MTX because my liver is it coping as well as we hoped, my body is screaming at me in pain, my hands seem to be caught in some kind of rigid position, thank god for an IPad where I do not have to use any pressure to type, my feet are burning , knees have disappeared with the swelling, and I realise for the first time my hip is hurting so guess the disease is moving on regardless

On the plus side, the sun has been shining in a cloudless sky for the past few days so have been able to get my daily dose of Vit D from the sun and even have a little colour- yes I know it is probably because of the MTX, do not care at this point and always love having a bit of colour about me.

As Rhett Butler said tomorrow is another day. I do so hope you all get a few hours decent restful sleep and for you tomorrow the sun shines and for sure it had better start shining in Kansas before I get there and get rid of all the snow they currently have, not part of my plan to try ski- ing with a walking stick.....laughing at the thought....night everyone and am so glad I can share the laughter and the tears with you x

7 Replies
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Katie - if you are only on 10mg MTX you can't really expect to be feeling a whole lot better - although I often feel sure I've licked only to get little reminders that its still there - just the drugs holding it at bay. But then I can't take steroids so haven't had anything masking it since starting on MTX exactly a year before you did. Its great that you are travelling and even better that you now feel confident that you will be well looked after on route both ways. Perhaps you should ask your doctor for some emergency provisions such as oral steroids for when you are in Kansas? Hopefully you won't need it but its a good idea to have some in your bag just in case? I hope the flare dies away again soon and you get back on track and have a very good trip. Take care. Tilda xxx

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Dose change/ additonal dmards and oral steroids and full painkiller review can help solve this book an apppointment with local gp or your local pharmacsit for a free service( all pharamacies!!!) they can review your medication. some pharmacists hopefully may have done some additional trainind in ra too!! I i DID cpd workshop on ra in 2011 or was it 2010. it isnt a given cos people can choose their own cpd I chose it for selk knowedge and purely im afraid selfish reasons....

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Thank you both - MTX has not been increased because my body is just not dealing with the side effects too well and I cannot take oral steroids because of another complication of my body- do not quite understand the whys and wherefores however my support team are simply amazing and I know are doing their very best for me. X

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I could have written a very similar account at the same point in my journey, I really imagined I'd be back to normal after 3 months of treatment and like you it didn't happen and I soon realised it was pie in the sky! But, I'm glad I didn't know that at the beginning.

However, the one thing I do wish I'd been told back then is that I should not be afraid to ask for help. You've done that with your trip with BA, and so I'd encourage you to do that at any opportunity. I'm discovering this too late! People have no idea what this disease does and it's fairly invisible so it's important to speak up.

It's good to know that BA have been so brilliant, and I hope you have a great trip.

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Thank you Sailaway- I have always been so independent with everything I have ever done so asking for help does not come easy. In my life I found whenever I asked for help it was almost always knocked back so I now have to work extra hard to make myself ask. I am so pleased that I was having such a bad day and the full realisation of the possible implications to making such a trip on my own could have, otherwise I may have set of full of dread and everything gone wrong stress levels going up and my RA flaring badly on holiday. Think I always knew it was not a quick fix but my head and heart just simply refused to accept that information still, could be worse and the sun is shining. I do hope you have a good day

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Hi Katie

I'm going on holiday in a couple of weeks and my kindly doctor has arranged a depomedrone injection for me just before I go. Just a thought for you to ponder?

Have a good trip

x

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Thank you Sophie- I was actually wondering if they would do that for me, even a week before wold be amazing. So am at the clinic again today and will most definitely ask. Have a great time- where are you off to?. X

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