Thursday, 29 November 2012

Chavless in Seattle. With drugs.

Okies, will try and condense Tuesday's hospital visit into something less than a millionty words - and this post will mostly be health based so do feel free not to bother reading if not interested.

There is a relatively new drug available for the treatment of Rheumatoid Arthritis, RoActemra / tocilizumab. It is one of the biologics, and pretty difficult to get on the NHS - not impossible by any means, but as you have to have tried and 'failed' with at least two other DMARDs (disease modifying drugs, such as methotrexate and leflunomide) it is a long and painful process.


A few months ago the fab Prof said I would be 'perfect' for a new trial being run, researching whether patients need to take BOTH Methotrexate and RoActemra for it to be effective, or the RoActemra on its own. As the meths causes godawful nausea it would obviously be a huge bonus for many people if this is proved to be the case.

So this is a double - blind trial. All patients will be given RoActemra, via a drip infusion, once monthly. All will also start with Methotrexate too (minimum of 10mg weekly). Half will continue with this combination while the other half will gradually have the meths tapered and then stopped. Double blind because neither the RA nurse or the patient will know which group they are in.

So for those (like me) who don't get along with the meths, there is - as the consultant told me - a good 50/50 chance of coming off the stuff altogether. Good enough for me! There have been significant improvements in people taking the newer drug, with minimal side effects - although obviously this being a relatively new drug there may be side effects to come that nobody really understands yet. It's a chance I am happy to take if it will give me some quality of life back, especially with my hands.

I do take a certain morbid delight in side effects that state 'death' at the top of the list!

Sooooo...... Tuesday afternoon was dedicated to a long screening session, a full MOT health check, with mountains of paperwork and tick sheets, many hoops to jump through etc.
X-rays, many blood tests, pregnancy test (I am not. I replied 'it would have been the bloody immaculate conception if I was!'), ECG, joint count (inflammation / pain), height (stumpy), weight (fat), blood pressue (high), pulse ('racing'), temperature, on and on it went.

They test for hepatitis and TB in particular, either of which would rule me out of the trial. Then again if I had either of those I would rather know about it!!

Fabulous staff, every one of them. All male, all mustachioed for Movember.

It has left me utterly wiped out which I knew would happen (thank you ME), in fact I am too tired to sleep, if that makes sense? BUT, one single line from the consultant which was then passed on to the two nurses, gave me an immense emotional lift:

'Let's see if we can start mending your poor hands.'

Anyone reading this who knits, sews, draws, writes - anything, will understand what this means to me. My poor swollen, painful and stiff hands look like chuffin sausages most of the time, I cannot wear rings anymore (I loved my silver rings), don't bother with bracelets or a watch now as my wrists are so bad. I am lucky that I can and do knit etc, but NOWHERE near as much as I would like. I never knit a top down seamless cardi or jumper because my hands / wrists cannot bear the weight. I switch to crochet sometimes when knitting needles are too much to handle.

Sewing, especially by hand, has taken a huge back step.
Drawing - doesn't happen.
Paining - ditto.
Beading - pretty much the same.

Trivial things to many I am sure, but when your way of relaxing is to make things, to craft, it is massive.

Hearing someone who has never met me before say those words was so important.

I now have to wait until the test results all come back, and the nurse will ring me. He said 'pencil in the 10th'.

I won't actually believe it and relax about it, until that needle is safely in my arm.
Never thought I would actively look forward to that!

Thanks for sticking with this - I think the main thing is that people are working on ways to help those with RA. It is a horrible, horrible life changing disease. I knew absolutely naff all about it when I was diagnosed, and was totally flippant about it. It was the reactions from other people that made me think, hang on, this might actually be serious stuff.

Talking about this to my Aunt the other day, I said there are three things I would LOVE to be able to do again:

ride a bike

Will report back. Toodles.

Wednesday, 28 November 2012

In which Sulky resists a Chav with wheels.

I have always had a weakness for Bad Boys. Hence being single, it never works out and Bad Boys seem to be very possessive and hard to get rid of. But fun ;-)

'This is all very interesting Sulks, but what has it got to do with anything?' I hear you ask.

Yesterday was a bit of a mega hospital day - the screening for a newish drug which might just start mending this knackered little body. I think 'tis easier to write a post dedicated just to that tomorrow.
But afterwards, after the three and a half hours of being prodded, jabbed, x-rayed etc, I was outside the hospital waiting for my taxi.

And there he was - whizzing that wheelchair of his round as though he was playing Murderball (remember Him, the blue haired delight of the Paralympics? Yum). Sadly this wasn't THAT him.

Tattoos, scrawny, shaven headed. Oh yes. Exactly the type I go for. Then something magical happened and he approached me in his wheelz. And uttered those romantic words -

'gorra light luv?'

If only I hadn't actually looked at him when I said sorry no, it might have been the start of a beautiful romptastic relationship.
But look I did.
That was one battered chavvy type, mug yer muvver for her pension book type of face.

Nah, think I will leave that one alone.
Not that desperate. Yet .... ;-)

Apart from yesterday's trip there isn't much to report. After last weeks flare up I had a few days of feeling really crap, like fighting off the flu. Dr chappy yesterday said that is classic RA, the way it attacks the whole body.
But things have been made and things are going to be made.

I have finally mastered gluten free scones, which I am delighted with - recipe to follow asap, but blimey these are nice.

I hope everyone reading (anyone reading? Hello?) escaped the flooding without harm. I so feel for the poor woman in Whitby who was given 30 minutes to grab her most precious possessions and get out, her home is being demolished tomorrow morning after a massive landslide. Poor poor woman. To stand outside and know you cannot get anything else as the house is condemned. Heart breaking.

We have had a day of sunshine today (allegedly, I spent most of the day in bed resting after yesterday). I much prefer cold but bright, much better than cold and grey and dark and wet and gloomy, which is what we have had for weeks now.
This single leaf made me smile yesterday and I had to grab a photo before that too fell onto the ground.

More tomorrow. Toodles .

Wednesday, 21 November 2012


Bloomin' weather, that is. And most of my knitting (I have a thing about shades of grey at the moment - NOT the crappy book I hasten to add).

Today has been a rubbish day, worst RA pain I have had for while so this will be a short post, as typing hurts. So does knitting which is a swine. My neck, shoulders, hands and right knee are pretty dreadful at the moment, hasn't really eased all day.

The gloomy dark days don't help either, and it seems to have drizzled constantly. What happened to those crisp, crunchy and colourful Autumns?

I suspect PSidney feels the same. Keep him warm, feed him lettuce, give him loads of cuddles - and ignore the grey days.

There was a minor moment of tragedy and chaos in the kitchen recently - a full bag, opened, fell out of the cupboard. I knew it would happen but shoved it in and squidged the door shut anyway, so it serves me right.
But what a mess - it looked like a mad game of pick up sticks:

Every time I tried to brush any up they stood on end, snapped and BOOOIIIINGED across the floor. It was so silly I just sat and laughed.
Yesterday I dropped a glass full of Diet Coke, all over wool (including white), paper, tablets (thankfully sealed), etc etc etc. Thankfully it avoided the camera and phones.

I have also dropped a pan of vegetable oil over myself (thankfully cold), dropped and smashed a pyrex dish, dropped PSidney's food, and a bag of opened bird seed. Plus others. RA doesn't just hurt, it obviously makes your wrists weak! Pah.

Most days I feel like this:

Whatever it may be.

Before I go (I think food is needed), how fab does the ever wonderful Cyndi Lauper look??


Monday, 19 November 2012

Of mice and body parts.

This has been sitting on some blocking. I know not why. But it made me smile everytime I looked at it.

This has been sitting on the windowsill - yet still I rather like the headless one.

Better photos to come asap. When did it start getting dark at 2pm??? 4 or 5pm yes, perfectly fine, but 2? What's that all about! And it's cold, wet, grey and generally yuk, real November weather. November should be banned (except for any of my friends who have birthdays in November, in which case it is a jolly fine month indeed).

The said blocking - a jumper I started knitting a few days ago from this rather lovely book - it seems to have slipped beneath the Ravelry radar for some reason, yet I really like it - for once I want to knit about 80% of the things in it rather than one or two.

There is a dodgy looking chunky dress, but apart from that pretty much everything else looks wearabubble. Plus they are seamed which I prefer, knitting round and round and round and round is boring and hurts my wrists. Seaming is fun, knitting things in sections is fun. Some of the patterns here:

The one I am knitting is the third along in the grey section. It screams out to be made in a soft, lovely wool but tough, I am knitting it with Debbie Bliss Donegal Aran Tweed, which (going by comments on Rav) seems to be a love it or hate it wool. I love it, I love the tweedy rustic look and feel of it.
It won't look all flattering and stroke-abubble as the photo but I think (hope) it will make a warm, cosy jumper for at home. Mine is shorter, jumper rather than dress length. There are a few mistakes in the pattern so far (how? How do books get published with more than one error?) but it is a fast easy knit.

I love the jacket (5th along in the greys).

Sleevies blocking overnight.
See that pin box, the pretty one?
Do NOT pick it up when it is upside down. Thassall.
I spotted a dropped stitch when I was several inches into knitting, hence the pin - I tried picking it up with a crochet hook (the stitch, not the pin, Picking up the pin is easy) but it looked messy, so will catch it in when I start seaming. Rustic. Very rustic.

I need to get back to Christmas and swap making / knitting . sewing etc, but definitely needed to have a cardi or jumper on the go again. Knitting little things is great fun but not as rewarding as summat to wear.

That's all for now, will leave you with a picture of the body parts which are now felted and drying. Hopefully I will have a pattern ready by the end of this week.

Monday, 12 November 2012

A tit free zone. Truly.

I seem to be knitting and knitting and knitting and knitting - and not finishing anything!
I tell a porky - I have finished 5 'things', piccies to come, simply could NOT stop knitting them!

I made a pile of this:
(several times over, many many ends), made 20 of these:

I think they look like squids or octopuseseseses like this.
They are not.
I also made these:

and might even start sewing them up tomorrow.

Wait -there's more!

I am making these:

(not black, very deep blue) for a Speshul Friend. Really enjoying knitting them and must make a pair for me (in black, not very deep blue!).

Quite a few of these.

Lordy, I could have knit three cardies in the time I have been making little things!

There is more. Crochet is happening, sort of.
I am ridiculously, childishly pleased with myself for managing to make this (my first attempt the other week was an arimugumyummygummythingummy cat and it was an absolutely DISASTER). But this worked, sort of.

Once again I seem to have chosen a pattern written in ancient Egyptian, it made absolutely no sense! I knew the pattern designer was not English, but for a pattern I had to pay for , translated into English, I really do expect it to be fit for purpose. Grammatical errors, spelling mistakes all fine, but blimey, I couldn't work from it at all.

So I am using a similar FREE pattern, and using the general idea of the one I bought, I can't give any more details as it is for a swap, and would give it away instantly!

So yes, I am managing to start things, many things! I think that's one really good thing about keeping a blog, being able to look back and realise that yes, even though I feel days / weeks go past without achieving a damned thing, the reality is that THINGS GET MADE!

I am also slowly but very surely attacking upstairs, 45 minutes a day is all I can manage physically but by hell it's making a big differene. Mentally that's a huge boost.

The Black Dog is sniffing at my heels at the moment, so every snippet of positivity is a good things.

That's it for now - I am hoping these arrive tomorrow, the postie has either become deranged (or it's a new driver) as parcels have arrived at the ungodly hour of 7am ...

wool may be involved ....


Monday, 5 November 2012

Snoozing. And tits.

It's been a while since my last post - just tired and sore, mainly tired. And sore. Did I mention sore?

These have been made, and are waiting to be felted. They have been waiting to be felted for some time now .... one is hopefully destined to be written up as a pattern, the rest are 'parts' for assorted swaps. Hence the rubbish photo ;-)

My hands are really sore at the moment and very swollen so no felting today. Am snuggled in the big striped jumper I made a little while ago:

Absolutely unflattering (huge, soft, striped) but wonderfully snuggly and cosy - made in Rowan alpaca cotton so it is light and fairly warm. Lovely.
It is chuffing freezing here, not nice.

More knitting has been happening - I am completely addicted to these little things at the moment (which won't have helped my sore fingers). Can you tell what it is yet?

I am using a mishmash of yarns I have already - the blue is a Jamieson's Shetland Spinthrift 4ply, the white is good old Ethical Twist, the black is Wendy Merino. The first one was fine but the other two (told you I was hooked) look much better (I knit the black / white parts with the wools stranded, worked much better).

Worked it out yet?
Here have another pic:

Here you go, right way up and half made:
Little blue tits (madam). Absolutely love knitting these!
I am also knitting these:

and doing a lot of cuddling with this:

Bless him. I get him out often so he can have some exercise, but all he has ever wanted to do when he is out is snuggle up, be stroked and sing. He is so sweet. And fat. And warm.
If I dare to stop stroking him, he licks me and nudges me until I start again.

I seem to have a LOT of partly made things, I really need to start finishing things soon. It is November, and certain swaps need posting before the end of this month. Yikes!