I was thinking of writing about a brilliant experience I had with the cooperation between my local GP and chemist. There'd been a mistake on my repeat prescription for a diabetes injection which I needed urgently as I'd left mine behind at my fathers - was looking after him at the weekend. ANd they managed to get it for me within three hours by liaising over the phone. What a relief!
But then round about 8.15pm I received a phone call from a doctor at the hospital where I get my RA treatment. I had asked my GP to request an early appointment with the consultant to talk about my medication following another episode with light sensitivity back in March. And this late phone call was to tell me that maybe I have lupus (the doctor has never seen me) and that I should come off infliximab. He had the impression that the light sensitivity was acute and recent. But I've had three episodes since 2004 and was just wanting to talk about how to manage it. If necessary I can sit under my hat and keep in the shade. I laid it on very thick that I was depending on my next treatment to see me through the difficult time I'm having with my father (101, congestive heart failure and failing fast). I have to go to help look after him, but he's at the other end of the country.
So now I'm really apprehensive. Will they stop my treatment on Thursday morning or will it go ahead? I was actually feeling better than usual ! I've decided to go to see one of the GPs so that I can see exactly what they've written to the hospital. So that will throw out all the things I was planning to do tomorrow morning!
Life with RA is a roller coaster isn't it folks. It just underscores the need we have to really use the time we have available to us as well as we can. Hopefully this latest will become clearer, and I have kept good records of my treatment so I can go forearmed. But there always seems to be something unexpected to trip you up.