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

[acelightning]

i've often told you, quite truthfully, that i wish i had the psychic/magickal ability to heal living beings the same way i "heal" machinery with my mind. but i'm glad to hear that at least you seem to be "holding your own", more or less. i wish i could come visit you and *HUG* you, dear penguin! i hope nikolai comes to visit as often as you both feel it's reasonable - he has a standing order to give you a hug from me every time he sees you, of course :-)

if you've read my two most recent journal posts, you'll see that i went to the annual pagan gathering last weekend. as usual, there were quite a few people with various disabilities; whenever appropriate, I sent them to No Pity! for sarky responses to well-meaning dimwits. also, my daughter-in-law did a two-part workshop on the complicated relationships between "carers and carees". this involved a lot of role-playing, so that everyone who participated could better understand how both positions feel. (all of us had some experience in at least one role, but it was surprising how many had done both in their lives.) it got very, very emotional at times, but everyone learned some valuable things. and in the discussions, i often quoted things you'd written/said about making sure to remember that a disabled person is still a PERSON first. (i think you'd like my daughter-in-law. you'd probably even like my son, now that he's a grownup!)

anyway, the Vicodin is making me blather, so i'll just give you as many virtual *HUGS* as you can take...

[jeshyr]

*huggles* Blathering is juuuuust fine.

[acelightning]

blathering while hugging would be so much nicer, though...

[kaberett]

I am glad you are basically happy, and sorry about the rest.

[jeshyr]

Thank you :)

[ephemera]

Did you really have a computer crash in the middle of writing that backup stsems article? That's the universe's sick sense of humour, to be sure!

[jeshyr]

Yup, I really did! Not quite as impressive as written because I regularly take 2-3 weeks to write an article, but it happened :)

[nou]

I'll be 40 next year too! I am planning a slightly complicated thing to celebrate it. Glad to hear you're happy and emotionally OK. I love the Tunisian crochet dolls!

[jeshyr]

Thanks! I've been thinking to try the winter dolls from here too: http://www.blacksheepwools.com/free-patterns

I'll probably change the pattern up a bit but it looks simple!

[splodgenoodles]

Visiting may happen. Except for the nasty December/taxi problem...but I'll see what I can do.

[jeshyr]

That would be super awesome :)

[splodgenoodles]

About the prednisolone dose.

There is a test that measures how much cortisol you are producing. Serum cortisol. My endocrinologist has ordered one for me, for next time I drop my dose low enough. I'm to have it a week after I've dropped the dose, to see if I'm below physiological levels or not.

she doesn't think it's entirely essential because she takes it as a give that I'll have symptoms for a while after a dose reduction.