A to Z

Here's a funny game to try, invented by M1K1 over at the A Little Bit Crafty blog. You know how your web browser will automatically fill in URLs for you as you start typing? Well, here's what I get for each letter of the alphabet as the first letter typed ...

A: Amazon.com. Need I say more?

B: Blogger.com. Here I am again!

C: China232. A blog that I have some business connections with ...

D: Denise Sutherland. My Author page on Facebook

E: English Language Skills — my latest venture!

F: Facebook, of course

G: Google, my best friend

H: Hyperbole and a Half, the most utterly and insanely hilarious blog in the world

I: Index-L - the international e-mail list for indexers

J: Jejune's Place,a self-referential link

K: Knitty, the best online knitting magazine

L: Lab Tests Online, a useful resource when you have lots of blood tests

M: Mahikari Basics, a site I've helped write and design. Cults. Just say no.

N: National Library of Australia, a resource I use a lot

O: Online Banking, with Westpac

P: Pharmaceutical Benefits Scheme, a site I have been frequenting much of late!

Q: Questionable Content, one of my regular web comics

R: Ravelry, the best knitting site in the world

S: Sutherland Studios, my business web site

T: Taste.com.au, a great online recipe resource

U: Unravelled, my friend Taph's blog

V: Vocabulary: Funny Words, a recent article I wrote

W: Writing, the writing subcategory on ELS

X: XKCD, another favourite web comic

Y: Your Dictionary, an online resource I use on occasion

Z: Zazzle, Moum! I can roun arcoss the parp!! The image on this mug is my current Facebook profile picture :)

What is YOUR web link alphabet?!

Dummies Woman!

A few months ago I was asked to write a little cryptogram for Wiley's employee newsletter, which I was happy to do ... and in thanks they sent me out (by UPS, no less) a 20th Anniversary Dummies Premium Pack, which arrived yesterday.

There's a t-shirt (which fits!), bookmarks, two cold drink / stubby holders (Son grabbed one for his daily can of Mother - which now reads "Mother for Dummies" when the can is in situ, LOL), a watch, and two funny LED flashlights ...

The flashlights are hilarious ... they're made from foamy plastic vinyl stuff, and only about 5 mm thick, with 2 clear LEDs at the end ... and they're printed to look like flashlights, LOL! They also have a magnet in them, so you can keep it on the fridge or wherever. Very cute.

So what with the other Dummies merchandise Wiley have sent me as an author over the past few years (pens, keyring, thumb drive etc), I can now be revealed in public as my true persona - DUMMIES WOMAN!!!

LOL :)

CellCept!

Here they are, my first CellCept tablets! There is actually a co-payment of $27.40 per month's dose (these two boxes together) that I have to pay, which is totally reasonable! So much better than $660!

As I suspected, the dose is fairly high, 2,000 mg per day (4 x 500 mg tablets).

My immunologist said they come across this problem quite a lot — immune-suppressant medications not being on the PBS for immune diseases (which you gotta admit sounds ridiculous when you put it like that). Often they're approved for very specific cases, such as rheumatoid arthritis, or to stop organ rejection, but if they're used to treat other rarer conditions they're not covered.

So, he has obtained a permanent authority for me to have access to this drug at the subsidised rate from now on. He thinks there's a good chance that it will help me, and not damage my liver further, but only time will tell. I start tonight, and will need weekly blood tests for a little while to check that all is well, and then monthly blood tests to check how my liver and blood counts are going. It's another one that increases my risk of getting cancer, and I'll have to stay out of sunlight etc. But hopefully I won't get any bad side effects this time!

My vision has deteriorated a little in recent weeks, so I need to stay on the high doses of Prednisolone for a little longer, but can start tapering down once the CellCept is established.

PHEW BLOODY PHEW

My immunologist just called (yes, on Easter Saturday), and he's got approval for the new medication (CellCept) which means that THE CANBERRA HOSPITAL WILL COVER THE COST!!!!! Entirely!!! I'll just have to get my medication from the hospital pharmacy, but it won't cost me a CENT. I start next Wednesday.

Weak with relief!!!!!!!

I kinda wish he'd explained what "getting approval" meant last week, would have saved me a lot of heartache and anguish ...

Happy Easter all :D

Loverly livery

A quick update:

My liver function is slowly improving (only 5 times higher than normal now, instead of 10), which means that (very unusually) the Imuran was the cause of the problems. This is good, as it means the sarcoid isn't in my liver, and my liver symptoms are slowly getting better.

But it also has some rather alarming consequences, the main one being that we're about to go bankrupt ... the next immune suppressant med I can try (and we're starting to run out of options) is CellCept (Mycophenolate) which isn't on the PBS for non-organ transplant patients, and costs around $660-$1,100 per box (of 300 tablets). Typical doses are 4-8 tablets a day. It's likely to cost around $20/day ... my immunologist needs to get hospital approval to even write the script, so I don't know my starting dose or exact cost yet.

This tendency for my neuro-sarcoidosis to be hard to treat is not a good one :( It's also not good when your immunologist says you're "special" (as in very unusual).

My vision has deteriorated again rather rapidly over the past week off Imuran ... so I'm back up to 50 mg of Prednisolone, crap crap crap (I had got down to 6 mg). Luckily I have Eye Clinic this week, so we can assess how it's going objectively. Hopefully I won't be on this high a dose for long (a few weeks?), but the tapering down process takes months and months. Back to steroid-induced diabetes, insomnia, and the rest.

I can't bear the thought of even more weight gain (almost suicidally depressed about the extra 15 kg since starting on Pred in October last year), so am just going off sugar as much as possible, for good. It won't be easy, but I've got to do something.

Bye bye cakes :(

(Chocolate cupcakes with vanilla icing I made a while ago, using the super cute Fred & Friends silicone tea cup cake pans, from my good pal Cindy).

And thank you everyone for your lovely comments, I really appreciate hearing from each and every one of you!!

How I love thee, liver?

I'm trying to keep medical posts to a bare minimum, I'm sure it all gets rather boring pretty quickly (I know it's pretty boring living with it!).

Things have hit a bit of a bump in the road ... I'm starting to get liver problems, my LFTs (liver function tests) are quite high, which indicates problems of some sort. I have quite a few 'liver' symptoms too (nausea, vomiting, itchiness, no appetite, dull ache in upper abdomen, excessive fatigue etc). My immunologist took me off Methotrexate a month ago, when my Gamma GT level was 150, as this was much too high (normal is under 42 or so) and Methotrexate can affect the liver – but after a month on Imuran (which shouldn't be damaging my liver), my Gamma GT result is 497! Around 10 times normal levels! Yikes!

It's possible that the Imuran has caused this, but not very likely. There's practically no chance that the six other meds I take are causing the problem. More likely, unfortunately, is that the sarcoidosis has got into my liver. This happens in around 50% of sarcoid patients, so it's not an uncommon development. It's just a bit shitty, really. In general it shouldn't lead to permanent damage, but in the worst case scenario you can end up needing a transplant (I know several sarcoid patients who are waiting for liver transplants).

I've been off the Imuran for 3 days now, so if that was causing the problems, I should gradually feel better. If it's sarcoidosis causing the problems, I'll gradually feel worse. Tending towards the latter so far ...

So I have more blood tests this week, and a biliary ultrasound. There's a chance I'll end up back in hospital if my condition keeps getting worse (ie it's sarcoid, not a drug reaction), especially if the itchiness and vomiting get worse. I may need a liver biopsy (La la la la I can't hear you!!) >.<

And I think my vision is slightly deteriorating again ... bugger it. I guess this means my corticosteroids are too low (I'm only on 6 mg/day – a big difference from the 60 mg/day I started on). The weight gain from the steroids could be a source of the liver problems, too, I've put on about 12 kg (26 lb) because of the steroids, and this can contribute to fatty liver problems. If that's what I've got. But we don't know yet.

Anyway. Trying not to obsess about it too much, will let you know what transpires.

P.S. I REALLY FUCKING HATE TAKING STEROIDS. It's actually a toss up as to whether I'd rather be half blind or really fat.

P.P.S. The super cute tea cosy is one I knitted for my sister, and is from my amazingly clever friend Loani Prior's book "Really Wild Tea Cosies". It's the Garden Party design. And my sister-in-law fell in love with it, so I made one for her too!