I am so pleased to report that I am back from Italy and I had a wonderful time, thanks to the 5 week of steroids that I started just a couple of days before. Two weeks at 20mg, 1 week at 15mg, 1 week at 10mg and 1 week at 5mg - this is the second such course I have ever had and this has made my summer with my children this year. (Big thank you to my Knight). We were on holiday as a family of 5 (3 children aged 8, 11 & 12) and two other families - 13 of us in total and I managed to do all of the day trips etc, the same as everyone else. I did sleep in longer than any of them in the mornings but hey, that's not too bad. OK I might have missed going up extra steps to get to the top of a tower or to see inside a church, but I did really well. It would have been a very different holiday without the steroids, I'm sure. It was hot! We had no way of knowing exactly how hot most days, but I would say the whole two weeks were between 32 and 40 degrees. I wore my rash vests every day (from Boden) and even found a website just before we went called Purple Turtle that had Craghoppers clothing with factor 40+ sun shield protection and mosi repellent built in - on sale - so bought two tops from there too. Would not be without my sun protection tops on holiday. I do look odd in my holiday snaps with my rash vests, floppy hat, sunglasses, trousers, and parasol - but that's a small price to pay. I have been tired the couple of days that we have been back, but I still have a week of the children being off school, so can relax and recharge before we start the school term next week. Oh and we were 60Km from the epicentre of the earthquake in Italy on Wednesday morning and were woken by it and the house shaking violently. Quite a scary and surreal experience. Luckily, we were far enough away and our house a modern steel structure underneath, that there was no damage to our house. But we felt quite a few of the after shocks too and that meant that I didn't sleep well on the Thursday and Friday nights before we flew home - the fear of knowing that those poor people couldn't get their children and themselves out of the houses in time played on my mind. May they rest in peace. Otherwise our holiday was a success. Smiley face.
(Oh and those that know me, I have an appt for an MRI towards the end of September, to see how this syrinx cyst is doing on my spinal cord - Neurosurgeon appt wont be until well into next year, but at least I will know if this thing has stayed the same size or is growing - and I guess if it's growing I'll get a more urgent appt - so relieved about that).
The rash that got me diagnosed with SLE
reducing steroids
