Sorry I haven't posted for a while. Mixture of being busy, enjoying spring weather and just not feeling like it. Thanks for all good wishes about today. I saw consultant this afternoon and thank God, the bloods are finally beginning to move in the right direction. However, I was hoping to feel thrilled about this, but instead burst into tears when he said the pred had to stay at 60mg. I am desperate for it to be reduced. Instead of feeling manic and well, I just feel like my body can't take anymore. My appearance is changing. I don't like what I see in the mirror or how I am feeling.I have glucose in my urine (possible implications terrify me). Everyday is a constant struggle to put on a face and pretend things are fine. My stomach has taken a beating over the last week from the steroids, waking me at 5-.30 in pain, despite increasing omeprazole. On Saturday morning i was due to take the alendronic acid, but was too scared to as me stomach was so sore. That then increases my anxiety regarding bone damage. Everything impacts on everything else and there seems no way of managing this. I feel out of control and tearful much of the time (and of course that is another side effect of the steroids)! I have liver discomfort most of the time, and clothes don't fit comfortably.Consultant was lovely and supportive when I tried to explain that I really do understand the importance of the high dose steroid, but it is MY body thats being put through this and I just want it to end. He agreed to drop the pred to 50mg, take omeprazole morning and evening (instead of just morning) added the potassium again( as my hands and feet are in constant cramp) and will see me (after more bloods) next Monday. Proff has written a letter for me to take to the meeting at work on 25th. They plan to reintroduce the Azathioprine in the next 2-3 weeks very slowly, and try again to stabilise me on that.
Colleen, please tell us how it went on Saturday, have been thinking of you and REALLY hope it was ok.
Oh penny, I really wish I could tell you that work went really well but the truth is it was exhausting, my whole body was in agony by the time I got home and I felt really really sick, I thought that a hot bath and an early night would sort it out but the truth is I couldn't sleep for the pain and it has taken me three days to feel any way near ok again, the worrying thing is I am back tomorrow for the two days in a row and I just don't think I am going to manage but I've no choice but to go and try my best, on a good note the staff had put welcome back posters up with balloons all around the home so that was nice and a lovely bunch off flowers as well, kinda worried now that going back to work is going to effect my bloods as surely you can't feel that bad and still have good numbers, got bloods done yesterday so I will get results next week when I go, i totally understand what you mean about your appearance, I am only 5 foot nothing ( or there abouts) and went from a wee dinky size 6 to a wee fat rolly polly, I know it's nothing to do with being vain it's just this illness is hard enough to deal with without looking bad as well, got my next appointment through for the consultant and it's a day I am working so I phoned up to request a holiday for that day as sometimes the clinic can be running late and you can't predict how long it's going to take but it was refused as no one to cover, this just really stresses me out, if I try and change the app it could be up to six weeks before I get another one and we all know how quickly things can change in six weeks, am going to see if someone will swap with me but that means doing more days in a row and I just don't think I can manage it right now, anyway enough about me, I really feel for you just now but so glad your numbers are coming down ( what are they at now) am still on the highest doze off budesonide and although the side effects are much less than pred it is still high doze off steroids going in to your body everyday, god only knows what will happen when they eventually get round to being able to reduce them, on a good note the strange bruising I had is disappearing so am happy about that but my arms are getting hairier ( I think that's a word) by the day, hopefully this good weather will continue as it always helps to put a bit off a spring in our step, keep your chin up penny and take care, thinking off you always ( sorry for the ramble ha ha) xxx
ReplyDeleteOh Colleen I'm so sorry. It must have been good to get the lovely welcome though! I think your work may have to let you attend the appointment........however, I know you won't want to make waves and I completley understand that. My bloods are ALT 216 and AST 102, so still up but getting there at last! Glad your bruising is settling..........sorrry to hear you've joined the hairy gang!!! Let us know how the next few days go xx
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