I said I would write again, good or bad, well, my title just about sums it up! I took my husband with me as I said, for an appointment at 11.15-11.30 this morning, we were still waiting to see the specialist "Boss" at 2.20, mind you I did have an x-ray done in that time so I shouldn't really complain.
I have had a mixture of emotions since this afternoon, ranging from, intense anger to frustration to tears and also feeling very depressed, (I could have sworn then).
The specialist said my x-ray is clear except for 2 right back when I was first ill, ( they showed "fuzzy bits", his description not mine ), my chest sounds clear, he doesn't know why I am whezzing, coughing, breathless, as all tests have come back clear, he also is writing to my doc to tell him that if I can't breath properly or am struggling in general or with chest infection, he doesn't want my steroids put up to help me as he doesn't think they are helping, the thing is he isn't giving me an alternative to take, he wants me OFF THEM.
I asked him, if he doesn't know what is wrong with me, why am I taking all this medication, his answer was, "I don't know"!!. Can you believe that man!
He said to me "You aren't showing any signs of struggling to breath at the moment", how I never swung for him I really don't know, I replied,"Well, I have been sat outside for the last 3 hours", he couldn't answer that one either!.
David, my husband also told him that he has seen me struggling to breath and also friends at work but he wouldn't have it.
He said something to me on the way out about getting physio to take a look at me to work out some exercises that may help kill me. Haha!
When I come off the steriods, which isn't going to be easy, I have only been able to get down to 5mg a day, I really do struggle alot and can't walk up the stairs without stopping and using ventolin, I find it hard to do nornal household chores and need to rest every so often, I can't walk our dogs at all, everything just gets a lot more harder to do, even now I can only carry a couple of bits of shopping, David needs to ferry me around in the car when the steriods get too low and at the moment because it is too cold to go out and walk for too long.
We have come to the decsion that when I am really ill again and can't breath because my meds have been stopped, and I am in hospital, then he will need to sit up an smell the roses!!!!
I am just so fed up with it all, 3 years of not knowing and then he as much as says "you're imagining it all".
Take care everyone and wrap up warm, it's a cold one tonight, I've got my hot water bottle ready!