The 15th & 16th; I have to remember that I am more than just my body.
The 15th of July.
Shattered. And it's only going to get worse. We've gone up to 30mg of pred today because my hands still haven't calmed down, and I'm scared that they'll be just as bad if not worse again in the morning and I'll have to go even higher.
I had more shortness of breath than usual this morning which is something they tell you to watch out for so that had to get checked out before they would use the line. So I had a doctor called Igor come see me and I pretty much exploded at him, letting out everything I've been feeling for weeks and made everything really awkward because we've never even met before. He was nice about it though - he quickly arranged an x-ray and a blood gas and everything looked okay, so I finally got going at about twenty five to two, but the new line bled so well, I was finished by about three! My breathing started to feel a bit better so maybe the line just needs to settle in and be accommodated by my vessels.
I can't about steroids any more. I want to go to bed and wake up to a magic solution to all this please.
The 16th of July.
I feel slightly better today. Like life is worth living again. I've had to go up to 40mg of pred but I just have to keep reminding myself to get a grip and I am incredibly lucky and I will hopefully outlive my steroid face. I have to remember that I am more than just my body.
Daddy took me to photopheresis today and that was fairly uneventful - I got set up reasonably quickly, chugged along at a decent rate, then Nik changed the dressing on my line site as it looked a bit bloody and grubby and she gave me a bag of goodies for flushing, then we left!
We had time for lunch at home, then we went back out to see How To Train Your Dragon 2. I thought we might be the only ones there but we were joined by four other people, boo. I will post no spoilers of the film, I'll just say that I really enjoyed it and you won't be disappointed!
This evening I was still not convinced that 30mg of pred had not made a significant enough difference to my hands, so I took 10 more. I know it's going to take longer to come off, but I feel I may as well go the whole hog now and every day I delay upping the dose is a day wasted. Now every night is like Christmas Eve as I just want to see what my skin has done in the morning.