The 6th of August.
Awake at three. Stayed in the dark just listening to podcasts and music because I didn’t want to aggravate my eyes any longer than necessary. We were out of the house by half eight to be at clinic early, but I still didn’t see Ram until eleven. I got the stitches round my line taken out though in the meantime so that should be more comfortable.
As soon as we were in Ram’s room, I just said “This is worst I can remember feeling without infection and as hard as I am trying to stay cheerful, every so often I really do just lose the will to live and I cannot carry on like this” and wept. Mommy explained all the things that are wrong (steroids causing exhaustion, constant coldness, physical muscle weakness, constant trembling, critically low self-esteem from moonface, then we have the fact that my skin still is raw and sore, and I’m now having a period every month despite not having taken the drug to induce them and this should not be happening, but my “emergency” appointment at the menopause clinic isn’t until the 2nd of September), I occasionally supplied information, then he looked at all my skin. I had calmed down by this point, and we talked. Rituximab has to be a very last resort as we can only apply for it once and I need to be proven to be exceptional, so we’re going to just have fortnightly photopheresis, come down on the steroids and hope it all just works, really. And from things he said, I remembered that there are other patients much worse off than me.
Left pharmacy with a massive list and went to town to get some presents and some lunch, then went back to the QE, picked up my prescription, then came home. Becky came round so we could discuss Alton Towers on Friday, I wrote up a blog post, and I’m getting this done before Bake Off!
My face is even more colourful, and tonight I’ve having lorazepam.
The 7th of August.
My first day of 40mg of pred for two weeks. Let’s see how this goes. Lorazepam last night really actually did some good, so I got up at maybe half past eight? Admittedly I wasn’t sleeping all the time until then but I was rested.
Mommy gave my hair a good wash, and I put a big old mask on my hair to try and give it a bit of a boost as I attacked it quite brutally with a hairbrush on Monday. And my Moleskine wedding planner for Becky’s wedding arrived!
I’ve done nothing of importance today because of it being a lorazepam day, and I’ve just found out little Margot Martini is almost definitely going to die. For fuck’s sake, she hasn’t even had a chance at life yet.
All I’ve done is wear cooling eye masks and watch shit on the box I didn’t need to remember. Kathryn, you are still here. Get more donors. This could’ve been prevented.