The 5th & 6th; I am stressed and all I can do is look at my hands.

December 7, 2013 — Leave a comment

The 5th of December.

Today I have finished my Christmas shopping! Well, except for Mommy’s Chanel stuff but that is by the by.

I slept in until ten because I was pretty tired from yesterday. This morning we changed my dressing on my arm, and I got dressed. That is all, really.

This afternoon, I scoured the internet, hunting for Christmas presents. It took until about five o’clock, but finally I am finished. Now I just have to decide on my wrapping theme! Such a decision. I love my fancy wrapping.

I also wrote yesterday’s diary entry so tomorrow I can blog. I think my mouth is improving, but my skin is all over the place. My neck and feet are getting better, but my hands look terrible, even after doing 30mg of pred today. I think what I really need is an emergency photopheresis session but we won’t get the funding for that for a few weeks, so for now we have to keep trying with steroids and hoping every night that it’ll be better in the morning. All the work we’ve done in the past three and a half years is being screwed by stuff now. I really don’t need my immune system being this compromised when I’m trying not to get infections, for fuck’s sake.

I am stressed and all I can do is look at my hands.

The 6th of December.

My hands have improved today – the 30mg of pred has definitely made a difference, but we’re not going to start tapering down until I see a significant change and it’s stable. It might bring on the moon face sooner than previously anticipated, but I’ll just have to deal with that.

I got on the scales and I’ve lost even more weight – I’m back down to 7 1/2 stone which some people might consider a dream right before Christmas, but considering my mouth isn’t up to eating everything to regain the weight yet, I just cannot afford to be this little. If I catch something or lose any more, I will not be in a brilliant position.

Today I took pictures of all the fabulous goodies the Elle girls gave me and wrote up the blog of the day. Anne-Marie came round to flush my line, and at first it wouldn’t bleed back which was a bit worrying, but after a tiny bit of saline, it behaved.

Tonight I am all burpy after dinner and I can’t take any Deflatine because it’s minty and hurts my mouth!

Nelson Mandela died last night, so that has been all over the news today. I don’t know what to say about him, other than that he is the hero of a nation, and will be greatly missed the world over. And even that sounds contrived.

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