Day 110: Cat 1 - 0 Arthritis

Right, who had their money on six days? If you did, give yourself a medal. 

Having had six days pain free I awoke on Sunday morning to find my feet were sore and swollen. The type of pain I get varies from joint to joint - shoulder pain feels nothing like wrist pain and knee pain feels nothing like jaw pain... you get the idea. Imagine what your feet feel like after standing up for 12 hours straight and then add in cramp at the same time... that is the best way of describing what my ankles feel like at present. This is making driving, standing, and walking problematic at the moment. But hey, I like a challenge. Now I realise that some of you are probably reading this with your sad, pity eyes thinking 'poor Cat, only six days pain free.' Well put those sad, pity eyes away. Seriously. Six days might seem like nothing to most of you, but six days of zero pain for someone who has been in pain every single day for 10 years is a dream come true. I'm not going to lie, I was a little bit disappointed to find it hadn't lasted longer (like, say, forever) but that was six whole days (medication aside) of feeling like a 'normal' twenty-something year old that I can add to my achievements. Cat 1, Arthritis 0.

Love,

Cat x

Day 105: That's my actual personality

You lucky folks are in for a treat... not one, but TWO whole blog posts in the same day. I know it's hard, but try to contain your excitement. 

Being an arthritis warrior is not exactly the dream job I hoped for as I was growing up. Air hostess, yes. Policewoman, yes. Ambassador for 'my nan's got that' disease, not quite. But now, I wouldn't change it for the world. I realise this might seem like a bit of a crazy thing to say. Being in pain everyday sucks, yes, but believe it or not after ten years I've actually more or less got used to it. And I get to turn my shitty situation into something positive: as an ambassador for two amazing charities I get the opportunity to share my story and spread the word that actually, I'm not 'too young for that', and help to ensure other unlucky ones get diagnosed quicker than I was. Being an arthritis warrior has lead me to be one of the busiest people on the planet, as I shall hereby demonstrate with the rundown of my week. 

Getting RA led me to study medicine. I saw the amazing work that my doctors, nurses, and physiotherapists did to get me to be well and to walk again that I decided I wanted to help others, too. Besides, I spent so much time in hospitals that I thought, well I might as well bloody work here too. So here I am, Cat who was quite happy with her career in retail, training to be a doctor. It's hard. It's tiring. It takes up most of my time. But it's totally worth it. 

So I have spent a lot of my week on placement. But in between colposcopy clinics and hysterectomies I have also managed to find time to celebrate my 24th birthday. By Saturday morning the situation in my mouth had finally started to calm down, and I had just five ulcers left, albeit still very painful and very determined to cling on. By Sunday morning they had disappeared. Not a trace. Nada. Now I'm not saying it was the alcohol that I consumed on Saturday night that cured me of my week-long-plight, but, well, I'm pretty convinced it was the alcohol that cured me of my week-long-plight. But whatever it was, THEY'RE GONE, and I'm finally back on solid foods again. I will not be so much as looking at a yoghurt for a very long time. I had an amazing birthday, complete with surprise party organised by my BFF and quality time spent with mama Bull. The best present however came on my actual birthday when I woke up to find... NO PAIN. Yep, you heard me right. For the first time in ten years I woke up PAIN FREE. I know, I couldn't believe it either. I did some weird and wonderful hand movements just to make sure, but nope, nothing. Best. Day. Ever. Thank you Rituximab, and thank you steroid injections. Not going to lie, there were some tears shed on Monday morning; I have dreamed that this day would come for ten years but never thought it would actually happen. So now the next game I shall be playing is 'guess how long this is going to last for'. Feel free to play along too. 

Yesterday I met up for dinner with Sam, my friend and fellow RA sufferer/arthritis warrior. Remember me saying I was finally going to do something about the whole arthritis-education-thing? Well Sam and I are working on a campaign to whack this problem over the head once and for all. That's all I'm saying... for now. 

And finally, today my awareness raising took me on a road trip to... Wigan. I am taking part in a BBC1 documentary about medical breakthroughs talking about my hip replacement and how it has changed my life (don't set your Sky+ to record just yet, it's to be shown in the Spring). And change my life it has; had it not been for that surgery I would be in a wheelchair right now and I would not be training to be a doctor. Anyway, this hospital in Wigan was the location of the first ever hip replacement and, without giving too much away, I had the pleasure of meeting the guy who was trained by the guy who pioneered that first ever surgery, and got to see various artifacts involved in the process. The science geek in me had a ball. The RA sufferer in me had a reality check. When, at 19-years-old, I was told my hip was damaged beyond repair, I took it for granted that I could have it replaced, no questions asked, hip hip hooray. But had it not been for this pioneering surgery, my life would be a hell of a lot shitter right now. Sir John Charnley, you're a bloody legend. 

The legend himself, Sir John Charnley.

The guy who was trained by the legend guy was lovely, ridiculously clever, and clearly passionate about all things hip. However, he said something which sadly reminded me of how patients feelings are way too often low on some doctors' list of priorities. So there we are, in between takes, casually talking about me having arthritis (what else?). He asks me if I'm on steroids, to which I reply that I am. And that's when he says this:

"Yes, I can tell just by looking at you. People taking steroids have a certain look. And personality, too." 

I could have burst into tears there and then. One of the few good things about RA is that it's not something you can generally see. If I didn't tell people, nobody would be able to tell I have it. Or so I thought. Apparently my face gives me away. Steroids unfortunately make you gain weight, particularly around the face. I am very self-conscious when it comes to my face weight as there's nothing I can do about it - I've been forced into taking medication by a bitch of a disease that has no cure and I can't stop taking them anytime soon. So basically, for all intent and purposes, he as good as told me I have a fat face. Way to make me even more self-conscious. And as for the personality part, well apparently people who take steroids become very restless and hyper. THAT'S MY ACTUAL PERSONALITY. So in one big fat sentence, he's managed to slag off my face AND my personality. Now I'm sure he's an absolutely bloody brilliant surgeon and a lovely person, but for God's sake, Prof, have a bit more consideration for my feelings next time. And that goes to all doctors actually. I'm a human being as well as a disease, remember that. 

Love,

Cat x

Day 105: Pop stars can get arthritis too

Raising awareness of arthritis in young people is difficult at the best of times. Although 15,000 young people suffer from arthritis (fun fact fans, that's the same number of young people that suffer from diabetes), it is still thought of as an 'old person's disease'. 

Because of this young people do not present to their GP early enough when they develop symptoms. 

Because of this GPs do not refer patients soon enough when they eventually do present. 

Because of this many young sufferers are too embarrassed to talk about their illness. 

It is never talked about on television, or on the radio, or in newspapers, because it's seen as such a boring and irrelevant topic, what with it just being something only grannies get 'n' all. Which is why when Jessie J spoke openly about having arthritis in the press last week I thought, finally, here's someone who can raise awareness of the disease and help to eliminate that stigma. But no sooner had I punched my young, arthritic hand in the air with delight, Neil Sean comes along and writes the following in the Metro:

"Expect to see more health updates from Jessie J, who has already spoken of her broken ankle in PR terms. Now the singer is telling everyone about her arthritis... not exactly the stuff of pop stars."

Well, Neil Sean, here's a reality check for you. Pop stars can get arthritis too. ANYONE can get arthritis. This includes you, your friends, your kids; not just your granny's best friend's neighbour. 

Reading this article gave me a reality check too. I've spent the last ten years going on and on (ok, I know, and on...) about how important it is that we raise awareness and educate people about the signs and symptoms so that if they are unlucky enough to get this bitch of a disease they GET DIAGNOSED EARLY. We can't stop someone getting RA, but we can influence their prognosis. Studies have shown that if a person is diagnosed within 12 weeks of their first symptoms they are more likely to respond to treatment and go into remission, thereby limiting joint damage. But at the moment this rarely happens, primarily due to a lack of awareness of the disease. It didn't happen to me, and it didn't happen to anyone else I know with RA, either. So it's about time I stopped talking about it and started DOING something about it. My dream is that one day every sufferer will be diagnosed within this 12 week window. So get talking about it. Know the symptoms. And watch this space. Especially you, Neil Sean. 

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

Day 95: Never taking solid foods for granted again

This is the current situation going on in my mouth:

These are just the ones you can see...

It seems a family of ulcers have set up home here, and I definitely do not remember inviting them to do so. Having one ulcer is inconvenient. Having 10-20 at once hurts. A lot. And they're spreading like wildfire. I am rapidly running out of space in my mouth to accommodate food. My diet currently consists of yoghurt, mashed banana, and Bonjela. Bonjela has become my new best friend. I am having to apply the stuff every 10 minutes or so to cope with the pain, although by the time I've covered them all it's usually time to start again anyway. I might as well just pour the whole tube in my mouth, it'd probably save me some time.

Why has this happened? Good frigging question. Noone seems to be able to figure that one out. I am now in week 3 of cold (I wasn't kidding when I said I get stuck with them forever). One theory is that I'm immunosuppressed; my immune system is struggling so much at the moment which provides ulcers with the perfect opportunity to invade my mouth. But I have been pretty much living at my GP surgery for the last week and having blood tests every day to check my white cell count, which come back normal every time. As I rung up for my results for about the 5th day in a row today I actually found myself disappointed to hear the words, 'your full blood count is completely within the normal range.' At least if it had been abnormal I would have had an answer. 

So as you can see, despite my joints being the best they've been in weeks, the RA is still managing to take a great big shit on my life. I am never taking solid foods for granted again. 

Love,

Cat x