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