Day 182: Happy New Year

To say 2011 has been a bit of a roller-coaster would probably be the biggest understatement since someone said that RA hurts.

2011 has been the year in which yet another treatment has failed leaving me barely able to walk, with irreversibly damaged hands and, at one point, in the A&E department of Leeds General Infirmary sobbing my heart out and begging for someone to help me - yep, RA strips you of your dignity as well as your independence and nope, nobody could do anything  to help. However 2011 has also been the year which saw me celebrate my 24th birthday pain free for the first time in over nine years thanks to my shiny new treatment. 

I shall leave you, and 2011, with a quick run down of the highlights:

- Yet another treatment failed. And I'm pretty sure I broke some sort of record with 4 GP, 1 out of hours, and 1 A&E visit in the space of a week. 

- Despite not being able to walk six weeks earlier, I completed London Marathon number three (with a little help from my brother and a swig of cider at mile 16). 

- I passed my exams. 

- I started new treatment.

- I saw Take That live.

- I rode a bike for the first time in nine years. 

- I started an amazing new job.

- I got a tattoo: the co-ordinates of the summit of Mount Kilimanjaro - my biggest achievement to date - on my damaged wrist. It reminds me of what I can achieve despite the pain.

- I went to Wigan to learn about hips. And to talk about mine. 

- I celebrated my 24th birthday pain free. 

- I said 'shit' in front of some posh peeps... and talked about joints (of course) at the ARUK 75th anniversary Lantern Opera. 

- I started bone treatment. 

- I talked some more about joints at the ARUK All Staff Day in Loughborough. 

- I talked about joints some more. 

- And last but not least, I went another whole year without letting my bitch of a disease defeat me. 

...I have a pretty good feeling about 2012. 

Happy New Year! 

Love,

Cat x

Day 165: What are you doing on 10th December 2012?

I genuinely got asked this today. 

I thought this was a joke at first, so I did my over-exaggerated fake-yet-very-convincing laugh, but nope, he was being serious. So I now already know what I'm doing on 10th December 2012 - I'm having my next bone juice treatment. It's a good job I'm a stationery whore and I bought my 2012 diary over a month ago. 

So this afternoon I had my first bone juice infusion. I have finally learnt how to say its actual real life name off by heart - it's called Zolendranic Acid. Personally I think 'bone juice' sounds a lot friendlier. So basically what happens is, they use a needle to stick a plastic tube called a cannula in a vein in my arm and then attach it to a drip filled with the Zolen...bone juice. And then I wait for it to make its way into my body. 

It's a good job I had my flatmate Alice with me because it's a pretty boring process. 

I also know what I'm doing on 4th and 18th January 2012 - having my second cycle of joint juice. Ok, it didn't last as long as I'd have liked, but all in all I think it's fair to say that round one was a pretty big success, and with my arm flare still in full swing round two couldn't come soon enough. 

Last week I was invited to speak at the ARUK All Staff Day in Loughborough. First Wigan, now Loughborough...such is the jet set life of an arthritis warrior. ARUK has teamed up with Great Ormond Street Hospital to set up an adolescent research project over the next five years focusing on adolescents with arthritis, and I am honoured to have been asked to chair a committee who will help to determine the issues vital to teenagers with various forms of the disease. Being a 'normal' teenager is hard enough. Being a  teenager with arthritis is a bitch. So I spent the morning telling the staff at ARUK my story and explaining why. And I'm going to keep telling my story until every single person in the country is RA educated.

Love,

Cat x

Day 96: Not one to do things by half

Today I spent the morning at the hospital. Whereas most people spend half an hour in a clinic, I spent two and a half. Well I've never been one to do things by 'half', have I. Here's a quick run down of the highlights:

1. The riot in my mouth is still leaving everyone stumped. I think everyone thinks I'm being dramatic when I tell them my mouth is full of ulcers... until I open my mouth that is. Then the standard reaction I have become accustomed to over the last week is "...OH." So my consultant, my registrar, and even me (in between applying Bonjela, obviously) spent a while tossing about suggestions as to why these ulcers have decided to set up home and seem so determined to stay. And the answer is, we still don't know. So I have had yet more blood taken for all sorts of weird and wonderful tests, as well as a mouth swab. I'm surprised I've actually got any blood left considering the amount of blood tests I've had recently. 

2. It has been three months already since I had my first dose of joint juice. You'd think this wouldn't have come as such a surprise given the fact that I am writing a blog counting the days, but no. And losing brain cells is the one thing I can't blame on the RA. But I am pleased to announce that it seems THE JOINT JUICE IS WORKING! Hand aside, I am near enough pain free in most of my joints and my inflamed joint count today was just three. THREE. It hasn't been that low in eight months. SO happy. Not even the knowledge that it is only three months until my next joint juice infusion can spoil this party. 

3. That bone scan I had last month showed that my osteoporosis has apparently got worse, particularly in my femur (for you non-medics that's the long bone at the top of your leg). So on top of the joint juice I now also have to have bisphosphonate infusions (or as it shall be known from now on, bone juice). On the plus side, the idea is that it will stop any more loss of bone mass and therefore my bones will be less likely to fracture. On the not so plus side, the drug has been associated with osteonecrosis of the jaw. And yes, it is as scary as it sounds. To put it bluntly, the bone in my jaw could become exposed and die. But it is fairly rare so, as ever, I'm just going to have to cross my fingers and hope it doesn't happen to me. 

4. This happened:

I had my joints injected with steroids. I realise all you can see in this picture is a swollen hand and an excessive amount of plasters, but that's because I was in too much frigging pain to take any pictures at the time. Seriously - I thought RA was painful but it's got nothing on this. I'm actually quite proud of myself; I didn't cry, I only swore a minimal amount, and I resisted the urge to squeeze the 5th year medical student's hand. And on the plus side, it took my mind off the pain in my mouth for about 15 minutes. Bonus. 

So there you go, you're now as up to date with my life as I am. 

Love,

Cat x