Haven't posted in a while as I have just been trying to get on with things. However I am in the midst of a really bad lupus bout and simply carrying on is not working. I have pains all over my body, everyday they seem to get harder to manage and I never really know what is going to hurt and when. Along with this I am struggling to remember anything, which is hard when facing appointment after appointment. All of this is hard enough to deal with but now I feel stressed out by the amount of Rheumy appointments I am getting and the fact that when I get them I don't fee like anything has been explained to me.
Does anyone else feel like their care is out of control and that they are not being told exactly what is going on. For example I had a positive test come back for anticentromere. I do not know what this is or why I was tested for it and all I have been told is that it is positive. I know (from google) that it can indicate scelroderma - but without an explanation I have to use Google to figure out what's going on.
Any support would be amazing as I feel like I am losing my mind!
Love to all