Saturday, 22 May 2010

I haven't had much time to write this week.

A friend was staying with me so that cut into my internet addiction time - probably a good thing, I really want to cut down the amount of hours I waste online. I could've probably learnt another language in the time I've spent on Facebook.

I started the sulfasalazine on Tuesday - so far so good. No side effects that I can see, but I am still on the lowest dose, need to work up to 4 pills in a few weeks time. No acid yellow pee yet either, slightly disappointed. Maybe on the higher dosage.. (Sorry was that too much information?). I am glad it seems to agree with me though. As much as I tried not to worry, it's still quite intimidating taking a new drug.

I'm also going to Barcelona on Monday for the week. Never been before, can't wait!!! I warn you, a long post with lots of fish eye lens pictures will be coming shortly. I'm such a snap happy tourist, it's quite embarassing.

Well, the sun is shining, it's above 20 degrees which is almost unheard of in Scotland, so I am going to bid you adieu, Internet, and go play outside.

Saturday, 15 May 2010


I had my ultrasound appointment yesterday.

It was meant to be at 11.45 so I left work, ditched my car and rode my little bicycle to the hospital. First problem - finding bike racks in the damn place. Second problem - finding the ultrasound ward which had recently been moved so none of the signs pointed to the right place. Also every person I asked had a different idea where it was. Anyway, cue a lot of running down corridors and up and down stairs (I think this must be some sort of new way they're getting arthritis patients to exercise!) I find it, all sweaty and out of breath - nice.

I shouldn't have hurried or stressed out because I had to wait almost 2 hours to be seen, but I didn't mind, these things happen. When I actually saw the doctor (not my usual consultant) she was lovely and very thorough and spent about an hour and a half with me. She did both my hands, my right wrist and my right foot (right hand and foot are my biggest problems). There's almost nothing wrong with any of my joints, no erosions or fluid on them. She wasn't sure but she thought there was maybe a tiny bit of synovial thickening on one of my PIP joints on the right hand - the one that started all this trouble anyway so that doesn't surprise me.

Anyway she said it looked 99% well, and taking my clinical symptoms and blood tests and xrays in mind there's no need in her opinion to put me on methotrexate just yet.

She wrote me a perscription for sulphasalazine, starting on Tuesday (when my throat clears up properly - still not quite right!!) Here's a picture of my new best friend:

Hurray - yellow pee, here I come.

Monday, 10 May 2010

So, this is the band I saw last night:

Gogol Bordello - gypsy punks!!! Woo hoo. SO much fun. There's about a million of them, all playing loud mad instruments including bongos, an electric violin and an accordeon (sp?). They were supported by Mariachi El Bronx who used to be the Bronx (hardcore punk) but are now, obviously, a Mariachi band. Natural transition...

Anyway, great fun. I decided to crawl out my bed about 7pm and go to the gig cos I'd been looking forward to it for ages. Left a bit early as my various ailments were ganging up on me but a great night anyway.

Sunday, 9 May 2010

Sore throat, go away... don't come back another day..

So typical. The arthritis is behaving but for the past week I have had tonsilitis. I officially hate everything ending in 'itis'. I sound like a croaky frog when I try to speak and there is sexy white phleghm all down the back of my throat. What are the chances that when the tonsils sort themselves out, the arthritis will pipe up? *cue violins*

I did have a wonderful night in last night watching Buffy the Vampire Slayer and eating a massive curry all to myself. So there are upsides to being in bed on a Saturday night. :D

Friday, 7 May 2010

Onset Story

I thought I'd share my onset story. I remember when I first went on the internet searching for info on RA how interesting I found each individual explaination of what symptoms they got first - much more informative than the numerous dry medical sites and articles.

It's not been very long for me. Almost 6 months, although in a way it feels like forever. I said to a friend the other day that I felt like I was in a daze for the first 3 months.

So, November had been a super busy month for me - at the start I'd been abroad travelling, then work sent me on a business trip to London and I spent the last week of Nov staying back late and working on a deadline. Now, I don't blame the RA on being busy. I've been a lot busier and a hell of a lot more stressed in my life than I was that month. But maybe I was a bit more run down than usual, who knows? Anyway, I woke up on the 1st Dec with the middle joints of my ring and middle fingers on my right hand all swollen up. I remember thinking 'How utterly bizarre!'. Laughed it off for a couple of days - it wasn't painful, but my tendons were so swollen that I couldn't bend the fingers properly. I booked an appointment with my GP for the following Monday, fully thinking that they'd be gone by then. When they were still there by the weekend, I sat at home on Saturday afternoon, Googled my symptoms and had a nervous breakdown - I was convinced I had arthritis.

I freaked out, went into hysterics. A bit prematurely, perhaps. My friends and family thought I was over-reacting but I've never been a hypochondriac and I've always been super healthy - not an allergy, not a broken bone even. My foot and knee felt 'strange' and I knew something was really wrong with my body.
I went home for a few days and waited for the GP appointment. He took blood samples and that began the long arduous process of finding out what's wrong with me.

To cut a long story short, since then I've done a whole lot of waiting around for tests and to see a rheumatologist. I'm not a clear case, all my bloods and inflammatory markers have been negative (tested twice), all my xrays are normal and my symptoms are also quite vague and kind of come and go. I'm waiting for an ultrasound now and hopefully starting a DMARD next week - they're still deciding if I should get hydroxy, sulpha or mtx. My rheumy says I have mild sero-negative inflammatory arthritis.

I feel ok really, physically. I have no right to complain really, I am still able to function normally and take no painkillers so I am grateful, I know I'm lucky (well not as lucky as those other 24 year olds who don't have arthritis!) but I also fear that one day my luck might run out and everything can become full blown and really painful. Fear is my biggest enemy and trying to deal with the weight of the diagnosis. For me so far it's been more of a psychological journey rather than a physical one, although of course the two are linked and I do have aches every day that a 'normal' 24 year old shouldn't have and some limitations to my walking distances.

But even so, I am mentally much better than I was at first. I still worry a lot about the future - 60 more years in this body, yikes! - but I cry less. I'm learning a lot about a disease I had barely heard of, met some incredibly brave people and have made new friends through it. I'm trying to just live my life and appreciate every day that I'm still able to do the things I love. With a bit of luck, I hope to muddle through somehow.

Well that was a long bloody essay. If you're still reading, wow! Well done, you got to the end, you can go now :D

Thursday, 6 May 2010

Election Day!

Election Day is here!

I'm off to vote. I know David Cameron will probably get it, but I'll do my bit to try and stop that from happening. He might be trying to seem all trendy and down with the kids with his bicyle and hot fashionista of a wife, but at the end of the day it's all a bit like putting perfume on a pig.


Tuesday, 4 May 2010


I've been thinking about fear a lot lately.

In general, I'm a worrier. Waiting and uncertainty are not my best friends. So, enter arthritis, stage left.

Safe to say I've done a fair share of panicking in the past 5 months. And some of it has been justified - it IS a very scary thing to come to terms with at my age (not that it's a picnic at any age!). The only certain thing with RA is that there are NO certainties. All I wanted to find out in the first couple of months was my 'prognosis'. I still terrify myself, every day, with thoughts of what might happen to me, my hands, by the time I'm 40.

But I've also noticed a different sort of fear which grips me daily. A fear of my own body and of 'doing too much'. Example: today I woke up with a bit of a throat infection. Nothing serious so far, a 'normal' person would just take some paracetamol, forget it and go about their day. My RA is behaving, I feel super duper apart from the throat, I should be happy.

Instead, I've been stressing all day: "Hmm is this a new RA symtom? Do inflamed throats have something to do with inflamed joints? Oh god, is my immune system going to go bonkers fighting the sore throat and will the arthritis flare up again? Am I growing an alien fungus inside my body, planted by green men from mars? Etc etc etc". RA makes me FEAR my body. I don't know what to do a lot of the time. There are too many 'should Is' and 'what ifs' - should I rest? Should I go to my yoga practice? If I go into work will I feel better or worse? Will travelling to a different climate flare me up? If I run will I regret it?

Even when nothing's inflamed (right now) I'm terrified of when it will happen again (after the sore throat?!) I didn't go to yoga today. I sat in with a friend, ate a massive pizza and watched Sex and the City. Hrmph. Did fear win, or was I being sensible? I don't even know. I just hate being afraid of living my life, the way I want to live it. Eleanor Roosevelt said that you:
"gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do."

Is this true for us RA-ers or is our fear often justified? I think I succumbed too easily to the RA fear today. Then again, maybe I just wanted an excuse to eat a huge pizza.

Monday, 3 May 2010

I'm back from my holiday! I'm pleased to say it was fabulous - lots of fun, sunshine and booze! Gran Canaria's a beautiful place - and suprisingly varied in its vegetation. I expected the beaches and volcanic soil.. but I didn't expect pine trees!!
This is the bungalow complex we stayed at, with its gorgeous pool which I made full use of:

The landscapes on the island ranged from arid canyons... lush greenery... tropical trees..

(And yes, I know I took way too many pictures with my new fish eye lens converter - I'm a typical snap happy type tourist!)
The week flew by as we relaxed by the pool, took a coach trip around the island, visited local villages, went to a wildlife park and even made fools of ourselves at a water-slide theme park. Well, only I made a fool of myself by zooming out of a waterslide very ungracefully, making a massive splash in the pool at the bottom and falling out of my bikini top for good measure and everyone's "pleasure"!
I drank a lot of sangria that night...

Thankfully all my worries about travel with the RA were mostly unfounded. The hand flare subsided on the second day there - I dont know if it was just coincidence, or the influence of the de-stressing, the sunshine and the change of scene.
The first day I had to walk about like a crazy lady with a bag of frozen peas permanenty attached to keep my hand cool and let me enjoy myself, but after that it calmed down. It's crazy how one day a finger can look like a giant hot sausage and the next it's pretty much normal.

My feet behaved also, and I did more walking than I've had the courage to do for MONTHS. Thank you, comfy sandals! I even painted my toenails..

Mmm..feet.. usually they kind of gross me out, but my own feet, sockless, with painted nails is a rare sight so I thought I'd share. I need to do more walking as I think the combination of the Scottish long winter and my fear of huring myself have made me lazy - more on that in a later post though.

The only thing that gave me a bit of bother all week were my knees, after our first long day of walking, on Tuesday. I was fine all morning and until about 2pm, but then I just crashed. Unfortunately we were far away from the hotel and I just had to grin and bear it, meaning that for 3 hours afterwards I had to lie down and rest. I had a little cry, the only time I let the RA get me down during the whole week, but I snapped out of it by the evening and even had a little swim which made me feel better.
After that the knees were fine and I had no trouble worth mentioning for the rest of the week. Oh and I didn't take any anti inflammatories or painkillers.

So - a resounding success!
Now, it's back to work. I've unpacked and am quite tired, so I think I'll have a beer and plan ahead for my next holiday which just happens to be in 3 weeks! I know, a bit ridiculous. But hey - whatever keeps us going, right?