Status

[jeshyr]

Had my first Xolair injection last Wednesday. It'll take up to 4 months to work so nothing to report yet, it's meant to help a lot with the mast cell crap though - if that means I can get off a bunch of other meds it'd be very nice.

Flatmate is off to Pakistan in two and a bit weeks. She'll be gone until nearly the new year so I'll be all on my lonesome! Anybody want to visit??

I've been doing a lot of work on ATMac lately. Probably not interesting unless you're of a technical bent but it's important to me :) Getting up to 1,000 visits per day which is nice for my ego!

Little bits of craft here and there ... I made an awesome crochet zebra and a bunch of the tunisian crochet dolls I've made before. There are some pics on my Flickr account of some of them.

I'm still trying to reduce my prednisolone dose ... endless bloody trials. I get sick for days and days every time the dose is reduced by even 0.25mg which is really frustrating. I'm on 8.75mg at the moment. Tried to talk to endocrinology last week at my appointment about the problems and they basically said that since 8.75mg is above what my body would produce naturally ("superphysiological dose") that the symptoms I get when I reduce it are impossible and therefore don't exist. Yeah, thanks guys. I felt a bit sorry for the registrar I was talking to because I was telling her stuff then she went and asked her consultant (I overheard...) then she came back and told me what he said, so it wasn't her fault really but I wasn't allowed to talk to the consultant myself so I felt totally helpless. Also when I said if the symptoms weren't endocrine related what did they suggest I do to investigate them she basically threw up her hands and had zero ideas. So yeah, screw that for a joke. Really frustrated.

I'm turning 40 in February - that's 40 days after Christmas which is sort of nicely numeric. I've been planning to do a 40 gifts leading up to my birthday so today I went back around read my 35 gifts tag from the 35 days leading up to my 35th birthday. It was interesting to read and also somewhat depressing because it was the exact time I've been most healthy in the past many many years.

When I started the midodrine and other blood pressure support drugs in 2010 it REALLY helped a huge amount but it's been slowly decreasing since then. Bleah. Reminded me I should update the state-of-the-Ricky document too - it should be the post before this. 2010 I was sitting up 2-3 hours a day, now it's significantly less than 2-3 hours a week :( Wish I knew why.



Can't think of anything else just now. Despite all the above health crap I am basically happy and doing OK emotionally.

r

Comments

[jeshyr]

That would be super awesome :)