Day 30: Do not ride if you have back or neck problems

For reasons I won't go into now I am back in the UK.

Yesterday I spent an amazing day with my cousins at Alton Towers. As ever I chose to ignore the numerous 'avoid if you have back or neck problems' warning signs before almost every ride, and I even managed to win at Duel (the lazerquest ride) with my crippled finger. Who says having arthritis has to ruin your fun?!

Day 16: What have you done to your hand?

Hola!

I haven't posted in a while, partly because there hasn't been much to report and partly because it has taken me four days to work out how to translate this site from Spanish to English. I am in Sotogrande on the south coast of Spain (20 mins from Gibraltar, 45 mins from Marbella) working as an au pair for an English family. The kids are fantastic: the 2-year-old has already told me he loves me and the 5-year-old has said he wants to marry me... if only men would fall at my feet this easily. However they would knacker any healthy person out, let alone someone like me with RA. But, as always, I am looking at this as a challenge and not something I can't do. 

I am still waking up with ridiculously painful hands and finger, so clearly the joint juice hasn't worked it's magic yet. For the first time in a while I am having to admit to myself that there are certain things I just can't do at the moment, such as the monkey bars at the water park today or doing a hand stand in the water for more than five seconds. Trivial things to most of you I'm sure but for me to have to say I can't do something is unbelievably frustrating, especially to an 8-year-old who doesn't understand what arthritis is (though naturally I have done my best to explain it to her - brainwash them from a young age and all that).

The parents - my employers - are aware that I have RA. Yet this morning when I came into the kitchen wearing a wrist splint the kids' dad still asked, "Oooh, what have you done to your hand?" Because obviously since I saw him last night I've had a chance to injure myself, seek treatment, and get hold of a splint. I realise this naivety isn't his fault though, people just don't understand what RA is. It's things like this that make me even more determined to help educate the world about arthritis.

Day 11: 1 in 3...

Today was joint juice infusion number 2.

This time I was kindly accompanied by mama Bull, who insisted on reading every single leaflet available and then announced that 1 in 3 people don't actually respond to the joint juice at all. Thanks for the positive thinking, mother. However I forgave her because she did buy me a panini, a sandwich, a pack of crisps, two drinks, and a chocolate gateau. I am quickly making a name for myself on ward 8 what with the chair incident last week and eating my body weight in food today. 

I was given the usual paracetamol, Piriton, and steroid infusion to help counteract some of the potential side effects. Soon after the joint juice started flowing I had a visit from Beth, who I climbed Kilimanjaro with last summer. And she brought with her not one, but TWO puzzle books. I nearly wet myself with excitement. And then along came Sarah with some chocolate cake. No wonder I had to go to the toilet three times (which by the way was still as hard as last time whilst attached to a drip, clearly didn't learn my lesson). 

There was a slightly worrying moment when the nurse looked concerned and asked me if I felt ok, because my temperature had decided to go up by 0.4 degrees in the space of an hour. As a result she insisted on keeping me there for an extra half an hour after the joint juice had finished to keep an eye on me but she eventually let me go and as you can see I am alive to tell the tale. Am slightly hoping the joint juice starts working within the next two days as I leave for Spain on Sunday to work for six weeks. However for now I guess I should probably just be focusing on not becoming that 1 in 3...

Love,
Cat x

Day 10: Greatest Day

Last night I went to see Take That live at Wembley Arena. It was genuinely one of the most amazing nights of my life. The ridiculous amount of clapping has left my hands in a pretty bad state today and waving my arms in the air has completely knackered my elbow, but I still maintain that it was totally worth it. There is one particular Take That song that is very close to my heart. Aside from being a beautiful song, it was the song that was playing on my generic mp3 player when I crossed the finish line of my first London Marathon back in 2009 – given that at one point I could barely walk this was something that many people, including myself, never thought I’d be able to do. Whenever I feel down or defeated by the arthritis I listen to this song and it reminds me that I have the strength and courage to beat this disease.

TAKE THAT - 'GREATEST DAY'

Day 8: It's just like making mayonnaise!

So far there is no change to report; my wrists are still the size of Brazil and I am having to type this without using my index finger because it hurts so much (it’s harder than it sounds, give it a try if you don’t believe me). I can’t help but feel a little bit disappointed at the lack of steroid high that I was promised too. Trying to stay positive though as I know it can be at least six weeks before I start to notice the effects. In the mean time I thought I would take this opportunity to explain a bit about how Rituximab works (or HOPEFULLY works, touch wood, etc)...

Rituximab (or as I will now be referring to it, joint juice) removes B-cells, which are a type of white blood cell. B-cells produce antibodies, which are proteins produced by the body in response to germs, viruses, or any substances which the body sees as foreign or dangerous. In people with RA some B-cells produce harmful ‘autoantibodies’ such as rheumatoid factors. The purpose of the joint juice is to remove these B-cells. However it also removes the rest of the B-cells too which produce useful antibodies, and although these will return after a few months for a while I’ll be more prone to infections etc. So if you could avoid coughing all over me that’d be much appreciated.

The joint juice is given directly into a vein in my arm via a drip. The nurses start it off slowly and gradually increase the pace to reduce the risk of me having some spectacular reaction. Which, as my friend Jessie pointed out, is just like how you make mayonnaise. If only mayonnaise could fix my immune system...